Angie's Stem Cell Transplant 2006

Benefits of Cancer Support Groups

2011-09-07T21:06:00.001-03:00

Benefits of Cancer Support Groups

The diagnosis of any cancer including common cancers such as breast cancer and even rare diseases like mesothelioma can result in feelings of fear, anxiety, depression and numerous other negative associations. For many patients, it might be a devastating diagnosis because it means scary changes. This is where cancer support networks contribute to the health of any patient.

What are Support Groups?

A support group, whether it is an online network or a group meeting in a physical setting, is any gathering where cancer survivors, current cancer patients and patients who have cancer that is currently in remission can go for support, advice and understanding.

According to the Mayo Clinic, the support group is not the same as a group therapy because the focus of the group is not treating mental health in a formal setting. Instead, a member of the group might lead the sessions or might invite a medical professional such as a doctor, a nurse or an oncologist to discuss various aspects of the cancer. Other groups might focus on emotional support rather than cancer education, resulting in groups that fit almost any personal need while you go through cancer and cancer survival.

Benefits of Support Groups:

The benefits of support groups will obviously differ depending on the goal of the group, but a few common benefits are seen with most support groups. One main benefit is the ability to discuss your problems openly with others who are going through the same situation. You will not feel as isolated or lonely when you have others offering similar stories and understanding your story.

Another potential benefit that you might have with a support group is better coping skills. As others share the ways that they cope with the problems and stress of cancer, your coping skills improve. You’ll learn new ways to limiting stress and getting back in control.

Any group that invites doctors or medical professionals can provide the latest information in cancer treatment options or advice on options that you might discuss with your doctor. Furthermore, doctors have access to the latest research, so they can provide you with details about new research.

Anyone who is just starting cancer treatment can find out from survivors what they can expect from the treatment, making the situation less intimidating.

Conclusion:

Support groups and online support networks benefit any cancer patient or survivor because it shows that you are not alone and that you have options. Getting advice, learning more about treatments and talking to others about your situation can improve your outlook on your situation.

By: David Haas

I PAID IT FORWARD SO OTHERS WILL LIVE TOO....by raising $7371 and completing 42.2km!!!

2011-08-09T13:54:00.004-03:00

FINAL UPDATE ON June 5th Marathon

July 5, 2011

Dear Family and Friends,

This is my final update regarding my participation in the Dodge Rock n Roll San Diego Marathon on June 5th, 2011.

There were over 35,000 participants in the San Diego event. Over 3100 of the participants (12 of us from the Halifax Chapter) were members of the Team in Training from all over the world. We collectively raised an incredible $9 Million for The Leukemia & Lymphoma Society. (Our Halifax Chapter raised over $65,000)

At our pre-event meal, we were told that research on treatments for blood cancer has evolved into improved treatments for many other types of cancer. By supporting the Team in Training you are helping to put an end to all cancer. At this inspirational dinner I was recognized as one of only a handful of survivors participating in the marathon.

The day of the race was charged with energy throughout the entire city. We were transported by bus to the startline….and awed by the vast number of people getting ready to begin the race!! We were organized into corrals as per our expected finish times. Each corral started a couple minutes ahead of the next….and so it went. It was a beautiful sunny warm day….my corral started around 7am… As we travelled along this route that showcased the city of San Diego, we were greeted with Rock n Roll bands, approximately every mile…the music injected us with an extra boost of energy… The support along the route was incredible…with cheerleaders at every water station….coaches from Team and Training encouraging us at various locations during the day….. There were cancer survivors holding signs thanking us for doing our part to help them ….pictures of survivors and people being walked in memory of…. Our end destination was Sea World…and we kept working towards that one mile at a time…

It started to wear me down a bit around the 15 mile mark as we faced a long straight away with a turn around point that didn’t ever seem to come….I knew that the distance we were covering had to be covered again in the other direction….it was late morning by this time, and the heat was starting to become a factor….plus my feet were starting to give me some trouble…. Anyway, I finally finished that section…and made it to a lovely park where we ran along the water….and off in the distance we could see Sea World….the sign said 6 miles away. It seemed sooooo far away, and my body was really starting to hurt….especially my feet. This last 6 miles, I had to dig really deep as each step was extremely painful. Near the end of the race, we had to circle a 2 mile desolate island, and it took all of my will power to get myself around that Island…. A Team in Training Coach from Montreal could tell I was struggling and walked along with me for quite awhile to offer his support….very cool. As I was in the last half mile or so of the race, our local running coach was there to help me get to the finish line…by now my feet were in severe pain….I was now running as it was too painful to walk…however, to put that in perspective, my running coach was walking comfortably beside me as I ran….so you will get the idea of my pace! J The last few hundred yards I picked up the pace slightly and finished with a run across the finish line in 6 hours and 42 mins…..

I’m sure I felt every emotion possible during the 26.1 miles.

Throughout the entire marathon I drew strength from my honored hero Natalie Flam and I also thought of Sarah Hawthorne and her amazing spirit that she shared generously when she was alive.

I especially felt the presence of my late mom walking with me every step of the way. I know she would be so proud.

I’ve faced many challenges in the past 6 years since I was diagnosed with Non-Hodgkin’s Lymphoma. When going through a life threatening situation, it is so important not to feel alone. I know that a big reason I am alive today is because of the love and support I received from my amazing family, friends, and an excellent medical team. Again, it was your support and love that helped give me the energy to train and complete my first ever marathon. It was because of you that I was able to raise in excess of $7000 towards a cure for all blood cancer. I want to thank-you again, as I couldn’t have done this without you.

It feels great to be PAYING IT FORWARD so that others will live too!!!

A cure for blood cancers is possible! Wouldn’t it be great to be part of that!!

Angie Banks

Please sponsor me and help cure blood cancers

2011-02-22T23:50:00.000-04:00

Please sponsor me and help cure blood cancers

PAY IT FORWARD - A Cure for Blood Cancer is Very Possible....Would you like to be part of this??

2011-02-22T19:32:00.001-04:00

Dear Friends and Colleagues,

I am training to participate in the Dodge Rock n Roll San Diego Marathon 42.2 km Walk on June 5th of this year as a member of The Leukemia & Lymphoma Society of Canada’s Team In Training. In addition, I plan to complete the Halifax Bluenose Half Marathon 21.1 km Walk on May 22nd.
All of us on Team In Training are raising funds to help stop leukemia, lymphoma and myeloma from taking more lives.

As a 4 year survivor of Non-Hodgkin’s Lymphoma, I am eternally grateful for the many advances in treatment that contributed to saving my life.
If you want to read about my journey, you can go to www.ambsct2006.blogspot.com.
The photo above is of me helping to plant a King Red Maple Tree just prior to my Stem Cell Transplant in July of 2006. I call this tree "Mount Everest", as it signifies my challenging journey to wellness. Every time I look at my special tree, I am reminded of how far I have come and how blessed I am to be able to watch it grow.I am walking in honour of my friend Natalie Flam who I want to support in her journey to wellness and a life without Lymphoma. In addition, I will be walking in memory of Sarah Hawthorne who passed away from Hodgkin’s disease in early 2008. She was a beautiful spirit who is greatly missed by many still today.

I am one of the lucky ones as Research has saved my life so please help me PAY IT FORWARD so that we can save all lives by funding research and helping patients in need.
The Leukemia & Lymphoma Society of Canada’s mission is to find a cure for leukemia, lymphoma, Hodgkin’s disease and myeloma.

Wow, wouldn’t that be fantastic!

You can help support me by making a secure online donation using your credit card. Click on the link below:
http://my.e2rm.com/personalPage.aspx?SID=2858663&Lang=en-CAYou will receive an email confirmation, along with your tax receipt for your donation and I will be notified as soon as you make your donation.

If you do not wish to make a donation online, donations can also be made by completing and mailing the attached sponsor form by May 15th, 2011. All cheques are to be made payable to 'The Leukemia & Lymphoma Society of Canada'. A Tax receipt for all donations exceeding $10 will be issued. Please don’t forget to include my name on the form so I can track the donations towards my goal of raising a minimum of $4000.00.

A cure for blood cancers is possible! Wouldn’t it be great to be part of that!!

Thank-you in advance for your support, and I truly appreciate your generosity!!Kindest Regards,

Angie Banks
Phone: 1-902-880-7508
work: abanks@comfort-foam.com
personal: a.banks@ns.sympatico.ca

April 22, 2007

2007-04-22T22:42:00.000-03:00

I can hardly believe that 3 months have gone by since my last post.......

I was re-reading all the comments tonight & once again realized how fortunate I was/am to have so much loving support through-out everything.

After receiving the news on finally achieving remission.......I ran around like a maniac trying to play catch up on all the things on my to do list from the past 1 1/2 years........PURE ADRENALIN.......

I forgot that I was still recovering from my SCT (white cell count was still only around 2.3)& high dose of radiaton (side effects were cough, fatigue & elevated heart rate)........eventually I CRASHED........ after that wake-up call, I smartened up & made sure I had more rest & a lighter schedule.

On February 17th, I took a celebratory trip with 3 friends to Turks & Caicos........it was a good trip.....though, I was feeling tired & a bit overwelmed by being so far away from the security of home......I think that this was a period of transition in my life. I was realizing a whole new outlook.

Since then, I have been re-building.......making changes.....& appreciating my life so much. I look at everything through new eyes......GOD I am so thank-ful.

On March 1st, I had a CT Scan. On March 9th, I had an appointment with Dr. Anderson....my scan looked good & my blood work was getting much closer to normal. I think that my whites were around 3.2 & my neutraphils for at the lower end of normal. So far so good.

I saw Dr. Wilke (my Rad. Onc.) on March 28th. A chest X-ray showed that there was evidence of calcification at the site of my "former" tumor.....he said this was a good sign that nothing was growing. He feels very good about the way things are going.

We just have to go scan to scan......if I can get to the two year mark....things will be looking really good....after 5 years in remission they will consider me cured!!!

I will be in touch!!

DAY + 189 GREAT NEWS TO SHARE!!!

2007-01-23T20:58:00.000-04:00

TIME TO UPDATE MY BLOG.......

I have been keeping things low key for the past month or so, as I was waiting for an appointment for my 3rd Pet Scan.....

Originally, my scan was supposed to be in December 2006, prior to Christmas......however,

Dr. Wilke ( my radiation oncologist ) had been trying for over a month to get me into the PET facility in Saint John, New Brunswick, as they recently opened, and it would be a lot closer.(approx. 3 1/2-4 hour drive from Halifax)

As it turned out, he was probably the first MD to try to do this, and the head of MSI here had been talking to people in New Brunswick, and had finally got back to Dr. Wilke on Nov. 30th.

Essentially, New Brunswick wanted to charge Nova Scotia nearly 5 times the fee for a PET SCAN than Quebec charges ($5500 versus $1181) for service to Nova Scotia patients, so the Head of MSI told the people in New Brunswick that there will be no deal, therefore Nova Scotia patients will not be funded to go to New Brunswick.

Dr. Wilke also said that I shouldn't pay privately in NB either, as they have had some screw - ups already, as they fly in the radiative stuff from Sherbrooke, per dose, and have had flights cancelled, tests needed to be rebooked, etc, and they are inexperienced.

So, in his hope to get me scanned closer to home......it essentially introduced a delay, of which he was sorry, as he wanted to get me scanned before Christmas.

Therefore.....this meant he had to go back to the drawing board & request another scan at the University of Sherbrooke Hospital in Quebec.....

I was actually OK with delaying my scan until January.......after the hecticness of the Christmas Holidays.

Anyway, Sue & I flew to Montreal on January 10th. Our friend, Lucien drove us to Sherbrooke on Thursday January 11th for the scan. Everything went really smooth during this trip....and after the scan was over....we had a great time going out to eat, shopping, visiting with friends etc.

The test results have been on my mind for the past week & a half........some people call it "scanxiety".......I tried to keep my nerves under control as best as I could......keeping busy helps!!

Anyway, after eating supper tonight....I sat down at my lap top to check my e-mails just after 7pm.......& there was the most beautiful site......an e-mail from wonderful Dr. Wilke saying "GOOD NEWS" in the subject!!!

WELL.........this is the news I so badly wanted to hear!!!!!

The PET scan showed complete regression of the area of abnormal activity. It is no longer metabolically active.

There is no abnormal activity anywhere else. It showed a little inflammation in the lung from the radiation.

I am in remission. Remission doesn't guarantee a cure, but it's a good start.

TIME TO CELEBRATE!!

Day +155 AS CHRISTMAS NEARS

2006-12-20T10:09:00.000-04:00

Everything is still going well & I have especially felt better in the past week. I am still just going for walks, however, I will to start doing light weights & back to pilates in January. It is like I am starting over again with my Fitness.....another challenge but one I will enjoy!

My last blood work on December 14th showed improvement.....everything except my White Count is in the "normal" range. My White Count was a 2.8 & my ANC was basically at 2000 (that is approaching normal). So nothing to complain about there.
My next appointment to see my hematologist, Dr. Anderson is Jan.5th....just a routine check-up.

We are completely ready for Christmas....& now all that is left is the fun of visiting & entertaining family & friends......

HAVE A MERRY CHRISTMAS & HEALTHY & HAPPY 2007!!

Day + 136 Recovery is going well!

2006-12-01T13:33:00.000-04:00

I know it has been weeks since I updated my blog, and I don't have a good reason......other than maybe I just wanted to stop thinking or talking or writing about hospitals & treatments & being sick for awhile.....just for a break!.......
However, it has been brought to my attention on several occasions by certain people ....that they get worried when they don't hear from me.......they have told me that they were in such a habit of checking my blog everyday, that they are disappointment when I don't write more often......SO HERE GOES!!

There really isn't much to report, other than I have not had any appointments since my last posting & I currently have not heard about any upcoming appointments.

My recovery has been a slow steady upward journey......sometimes I take a step back & then forward again. I have learned to manage my energy each day......usually I accomplish more earlier in the day & save the easier tasks for the evenings.....ie. like watchin TV :)!!
The past couple weeks, I have noticed a much greater improvement in the way I feel.....my fatigue is less & I just know I am getting stronger.

I am continuing my supplemental program which involves.....a Multivitamin, IP6, Astragalus, Pro Biotics(acidophilus) , Ambratose (glyconutrient), Phytaloe (dried fruits & veggies), Flax......& sometimes my UDO's Oil. I also inject myself with Iscador every couple days....it is basically a mistletoe root that helps kill & stop tumour growth.....this natural type treatment is used in conjunction with conventional cancer treatments in 70% of cancer patients in Germany.

I have also been going for Vitamin C IV treatments at my Naturopath's office.....it is approximately 2 hour process & I try to go twice a week.
Vitamin C is a known antioxidant and has been associated with reduced risk of stomach, lung, colon, oral, and prostate cancer.
Immune system booster. Vitamin C increases white blood cell production and is important to immune system balance. Studies have related low vitamin C levels to increased risk for infection.

Everybody gets cancer.Some of us die from it.Why?
Normal, healthy cells are arranged in a definite, organized structure to form tissues. They only divide to make a new cell when the need arises. Sometimes, a cell will mutate and disobey the rules. This is most often caused by free-radical damage to the cell, which is why we hear so much these days about antioxidants such as Vitamins A, C and E and Beta Carotene. These Vitamins neutralize the free radicals and slow their progress. This mutation of individual cells probably happens to all of us every day. As quoted in An Alternative Medicine Definitive Guide to Cancer, Dr. Douglas Brodie says
"Each one of us produces several hundred thousand cancer cells every day of our lives. Whether we develop clinical cancer or not depends upon the ability of our immune systems to destroy these cancer cells. That's because cancer thrives in the presence of a deficient immune system."
Why Cancer Progresses?
When a mutated cell has the ability to replicate itself with disregard to the tissue structure - This is a tumor. Our bodies have two basic lines of defense against tumor growth - both involving Vitamin C.
The first is our immune system. Even after the most successful surgery, radiation- or chemotherapy, some cancer cells are bound to remain. It is our immune system that will hunt down these cells and destroy them. Vitamin C is required for our immune systems to generate and mobilize the specialized cells that fight cancer and infections, too. The more stress your immune system is under, the more Vitamin C is used, if it is available. If it isn't available, the disease will not be stopped.
Secondly, there is a cement, or ground substance, that holds our cells together properly to form the integrity of our tissues. Dr. Ewan Cameron theorized that cancer cells excrete a substance, hyaluronidase, that breaks down the collagen and fibers that make up the structure of this ground substance which creates the space needed for tumor growth. Vitamin C is required for the development of collagen and this fibrous material. This is why it is so important to all tissue related problems, including disc injuries, gum problems, vascular diseases and even skeletal problems. It is a reasonable leap of logic that chronic Vitamin C deficiency is a major contributor to osteoporosis. Juvenile osteoporosis could probably be eliminated or at least minimized through proper nutrition.

In addition to my Vitamin C treatments, I have been using an Infrared Sauna at my Naturopaths office......my energy skyrockets after my session...& my skin feels so smooth & my spirits are lifted & I just feel GREAT! There are so many benefits for FAR Infrared Saunas, that I think everyone could benefit for using one regularly. Do your own search on the internet, if you are interested to learn more.....however, some of the benefits are:

Relaxation & Stress Relief
Pain Relief
Weight Loss - Burn 300-600 calories per session!
Improves skin, reduces scarring & cellulite
Passive cardiovascular training
Boost energy, immune system & metabolism
Detoxification
Decreases lactic acid (good for over trained muscles)
Perfect warm-up before sports and workout
Speeds healing and recovery from injuries, sprains and cuts
Helps stop swelling
Improves lymphatic flow and blood circulation

This is an excerpt from CTV news last year:
http://www.prohealthsauna.com/u-ctvnews.html

Only read this if you are interested, as I do not intend to bore......
We live in a world where we are overpowered by toxins and pollutants. Almost everything we eat, drink, or breathe has toxins and pollutants in it. As a result our bodies are constantly trying to detoxify us but because the input is so great, we simply cannot keep up. Therefore, we store a lot of toxins until we can dispose of them.Someone once compared it to working in a factory where our job was to shred paper. As the constant stream of boxes came down the conveyor belt, our job was to open them up and shred the contents. This all worked fine until the conveyor belt started to speed up. As a result we got further and further behind until we had no choice but to stack some boxes in the corner until we could deal with them. Still the boxes kept coming and pretty soon we had no more room to put them. All we could do at that point was to shut down the conveyor belt until we could catch up.This is what happens in our bodies. If we take in more toxins than our body can dispose of, we store these toxins until we can get rid of them. But, if the toxins keep coming in faster than we can process them, our body eventually gets overpowered, shuts down, and we get sick. I believe fibromyalgia is caused by this type of toxic overload as are many other sicknesses and diseases.Therefore, to stay healthy, we need to decrease our intake of toxins and process the toxins we do take in better. If we help our body get rid of toxins, then our liver, kidneys, and other organs have more time to dispose of the daily intake and we store less and less. In an infrared sauna, the infrared rays penetrate up to 2" into our bodies, increasing blood circulation and cellular activity. By simulating a fever the immune system springs into action. Our heart rate increases and as we start to sweat, toxins are released from our cells and carried out of our body through the skin. This gives the heart and circulatory system an aerobic exercise as well. As muscles and joints are loosened up, we absorb more oxygen. This makes us feel refreshed and energized as aches and pains disappear. It has been said that to have a 30 minute sauna once a day for a year will get rid of most of our accumulated toxins and pollutants and help our liver and kidneys keep up with the rest of the detoxification process.Almost everyone I have spoken to who uses an infrared sauna regularly tells me the same story. More energy, greatly reduced pain, better looking skin, more flexible, loose muscles and a general feeling of health and vigor. I have experienced the same. The inflow of toxins is not going to stop unless we make some drastic changes to the world we live in. This is highly unlikely to happen in the near future. Therefore, the best we can do is to help our body detoxify so we can be healthier, live longer, and most importantly, enjoy a good quality of life.

"They spend all their health making money, and then spend all their money trying to restore their health." Anonymous

This is just one site of many that has a ton of info. on the subject: http://www.physiotherm.net/saunas/43/infraredSaunaResearch.html

ENOUGH ON THAT......

Other than my naturopathic self imposed regime, I am busy trying to get my life back to a normal....Xmas shopping, decorating, visiting with friends, being able to eat at restaurants again, walking etc.
Everything is currently going along well & all of our family are looking forward to a wonderful Christmas & postive & healthy coming year.

I probably won't be posting everyday, however, I will try to update more often then my last posting.

Day + 108 Appt. with Dr. Anderson

2006-11-03T15:25:00.000-04:00

Since my last posting, things have definitely improved....

On day 101, I stopped vomiting....on day 102 I managed to have Smoked Salmon flavored with Maple Syrup...cooked on the bar-b-que....with some Jasmine Rice on the side....YUM! I do like my food!!!
It was like...."One day I couldn't eat ....& the next day I could"!!......Just like when all the problems started....One day I felt strong & managed to do a 3 hour hike in the woods on the Thanksgiving Monday....then had a delicious meal at Mom's.....then the next day I couldn't eat. The mucositis in my esophagus came on suddenly & left suddenly.

I have to say that the radiation has taken more out of me than any of the other treatments. In addition to feeling week from not eating for over 2 weeks.....the fatigue is adding to the challenge. According to my doctors, I will be looking at months before I will get back to feeling "Normal". Dr. Anderson, wants me to be gentle with myself & not to rush to quickly into my work-outs, as my body needs me to manage my energy for healing. He told me that I will have good days & bad days....but slowly I will see some progress.

I had a terrific meeting with Dr. A today.....he still feels we are moving in the right direction with my treatment.....he was not overly concerned about my positive PET scan in August & was pleased by my CT Scan on October 12th. Of course, we take nothing for granted in this unpredictable world of cancer.....but things are looking good at this point in time.

He talked to me about how important it is for me to start re-building my life again & adding some normalcy to my day to day life. As he noted, I have been on a roller coaster during the last year & through some very intense treatment in a short period of time......so he wants me to gently start thinking about life after treatment. He is a very kind man & really seems to have my best interest at heart.

I am so thankful that my own personal experience with my nurses, doctors, technicians & other hospital staff has been a very positive one...for the most part. It really makes the journey so much more bearable when people are kind & seem to care. There is so much negative talk about our health care system....(which I know has definite merit due to funding)......but the people who work the system give so much of themselves & do their very best with the tools available to them.

Anyway, I am greatful for so many things......including the endless support of my family....& friends....How awful this last year would have been without the love of so many! I wouldn't want to travel this alone.

I send my love back to all of you!!! THANK-YOU...

DAY + 100

2006-10-26T11:43:00.000-03:00

Today is the final day for me to follow the strict precautions following my Stem Cell Transplant.

So officially......I am allowed to eat fresh fruit & veggies again...& I can eat out at restaurants.

Unofficially....I am definitely not physically able to even attempt any of the above. Keeping food in my stomach, continues to be a challenge.......my esophagus is feeling better for swallowing, however my stomach acid is acting up.....I think it is having trouble digesting my food.

I am continuing to take my Zantac for stomach acid & Zofran for nausea plus I have started taking a liquid laxative to help with that end of things.
After vomiting this morning....I took my necessary meds. & ate some yogurt & liquidfied cream cheese in a small amount. Today, I will continue to eat small amounts every couple hours.....I am going to walk a little & see if there is an improvement. Also, I will try to get more protein in today via egg & tofu.....
I have an appointment to see my Naturopath this afternoon.....so she may have some suggestions to help me out too.

Other than the above, my spirits are good & I believe that I am on the way to being fully healed.......this is just a little glich in the road......no journey worth achieving can ever be too easy!

I am very happy to be in my own home & am so thank-ful to feel loved and cared about by my family & friends. Loving & being loved is the best thing in life.

In addition, Gratitude, happiness and forgiveness of anyone and anything will continue to be my part of my life's goal......all important to healing!

I will be in touch.....

Day + 98 "Out of Hospital"

2006-10-24T17:10:00.000-03:00

This is just a quick update to say I am home from the hospital. I was released yesterday afternoon at my request......though I hope I haven't jumped the gun too soon!

On Sunday, I spent most of the day at home on a day pass, and felt that I did well with getting enough fluids & nutrition into me. I was feeling better, even though I was tired. On Monday, I continued to feel fairly good & thought I was ready to be released from hospital. I felt that I would heal better at home in my own bed with my own kitchen to make nutritious food. Plus, I thought I would be safer from infection & disease more prevalent in hospitals. My White Blood counts were only 1.7 & my ANC was 1190.....so still running low in the immunity department.

Anyway, yesterday went fairly well & I felt I managed to get plenty of food & fluid into my gut. However, this morning I had some cream of wheat & immediately my stomach started to gurgle. As time went on, I started to feel worse & ended up vomiting....then I tried to get water in me to replace some of the lost fluid & I vomited again.......then I realized that I forgot to fill an important prescription for Zantac....which reduces the acid in my stomach to prevent acid reflux. I believe it is the acid reflux causing my problems.

Mom then filled my prescription for Zantac , along with an added prescription for Zofran to help with nausea. ( I called Dr. Bata who over saw my care in hospital , and asked her to phone in this prescription to the pharmacy, & she was kind enough to help me out).

I vomited once more so far (3 times total)....then managed to take my Zantac & am crossing my fingers that will solve the problem in the next 24 hours or less.

Anyway, I am concerned that I am losing too much weight & body fluid.....& am determined to get this rectified ASAP.

I will keep you posted.

Day + 94 Still in Hospital

2006-10-20T22:40:00.000-03:00

So.....I am still having trouble drinking/eating & am currently getting most of my nutrition by IV. ( It is called TPN). I will not be discharged from hospital until I can orally digest an adequate amount of nutrition. We are working on pain control to enable me to swallow. I am starting to drink water....& small amounts of broth....& tonight I had some yogurt with lots of omega oil & Pro-biotics...plus some other nutrient filled liquid. (complements of my friends Cindy & Amy)
There is a balance between getting the food down & keeping it down......as when I force feed my self, I end up vomiting & that sets me back further. My esphogus is very raw, bleeding, red, black, white...if you were able to see it. Anyway, I have found it to be more painful than the mucositis I had after my Stem Cell Transplant.(It has taken alot of abuse from having radiation 2 times a day for 2 1/2 weeks......but if it works then I can handle this too!

I think I may be turning a corner....as we are using a patch system to help with my pain.(Fentanyl). I have two patches of 25 mg. attached to my thigh...& the slow release pain medication helps keep me comfortable. When I am ready to eat, I swallow some xylocaine(Lidocaine) to temporarily freeze my espophogus to help control the pain to swallow. I have now started using Ativan to help me sleep......plus Zophran to control nausea......& Pantaloc to control my stomach acids & help prevent reflux action. So with time, rest & the aid of the above medications....I should be healed in the not too distant future.

As usual, I have the non waivering support of my family....Mom is here almost everyday....Sue, Dad, & Coleen have been here lots too!! My Uncle Terry & Aunt Tish visiting from British Columbia have been in for a visit. My Aunt Tish spent a couple afternoons, along with my mother here at the hospital.....when I was feeling not so good.....it was a great distraction being able to get caught on my family in the west from my Aunt Tish. I really appreciated her being able to spend quality time with me!!! Plus visits from Andrea & Sue, Adele, Cindy & Amy, Maureen......sometimes I haven't been feeling too good, but is was a good distraction to have some visits. (though sometimes I wasn't well enough to have visitors....as I was in too much pain) Most of the other time I have been resting & sleeping.

One good thing that has come out of this hospital stay....is that I have been able to take advantage of some complementary services offered by volunteers at the hospital. We have a special place in the hospital, called the "Sunshine Room". Every week day from 10am.-3pm. services such as Massage Therapy, Reflexology, Therapuetic Touch, & Reike are offered to cancer patients. Finally......we are intergrating medicine & alternative medicine/therapies to aid in the healing process. So I went for a Massage on Wed., Reflexology on Thurs. & another massage today. It was a great distraction from my pain & a positive change of scenery.....
What a wonderful service offered by all these volunteers!!!

If any of you have followed Sarah's Stem Cell Transplant Journey....I want you to know she is on the count down to her Transplant day next Wednesday.
Her blog site is: http://journeytobabeland.blogspot.com/
I would appreciate anyone who could send positive energy her way.....as she has given so much positive energy to so many people with Lymphoma & beyond......many of these people, she has never met......including me!
Her comments during my SCT.....were so encouraging....often made me laugh & really lifted my spirits time & time again....
She has been very helpful to many others on the lymphoma magic message board....I really don't know where she gets all her energy. However, energy loses it's zest during stem cell transplant process, which is why I ask as many of you as possible to send her some of your encouraging energy.....help her have the strength to get through this!!!!
Thank-you in advance for anything you can offer!!

I will keep you posted as to when I am able to get out of hospital.....
I am here until Monday for sure......but my goal is to be well enough to be discharge on Monday....lots of work to do between then & now.

Day + 88 "Another Hospital Stay"

2006-10-14T20:49:00.000-03:00

A picture of Jasper & I in hospital watching "Saturday's Hockey Night in Canada" Leafs vs. Flames.......Jessie laying on a pillow between two chairs.

It was so cool to be able to have my dogs visit me in the hospital. Sue had brought them over to Point Pleasant Park for a walk & then stopped into visit me for a bit. We were worried about leaving the dogs in the truck too long, as they were soaking wet from the rain & had not had any supper.........so when Sue was getting ready to leave....my nurse "Carmen" over heard our conversation & told us that dogs were allowed up to visit their owners on this floor. Some dogs have even stayed over night & the nurses take them out to use the bathroom! All my nurse had to do was notify security. Well......since my blood work was good enough.....we couldn't resist this opportunity!! Jasper was so excited & pulled Sue down the hall.....Sue asked her to find me & incredibily she knew when she was at my room.....she stopped at my open door .....looked at my nurse & then burst in the room when she saw me.... it was such a thrill to have them here with me! I never thought this would ever happen....
Sue may bring them over again tonight....as it is quieter at night & not too much of a disruption.

So you are probably wondering why I am in hospital....
basically, on Tuesday my esophogus pain became quite intense.....I could no longer swallow food & could barely swallow liquid. I went to my radiation treatments for the day & then filled a prescription of magic mouth wash that was supposed to help numb my mouth & esophogus (feeding tube) prior to meals......well, it did not do it for me....so I couldn't eat anything that night. On Wed. morning, I vomited when I tried to drink. I went to my radiation treatment & then asked for something stronger.......while I was waiting to see a nurse, I started to feel sick.....so I told them I had to go home & I would deal with it in the afternoon. So I went for my radiation treatment at 3pm. & waited to see Dr. Wilke. I was still feeling lousy, so they found a room for me to lay down. Anyway, Dr. Wilke prescribed some liquid codeine, some antifungal, liquid tylenol, liquid motrin & some other stuff for me to try that night.
Mom decided to stay with me over night to help, as I was feeling lousy.
To make a long story short I couldn't keep anything down.....& it took two efforts for me to keep down the gastrafin liquid that I needed for the CT scan I was having the next day. I vomited several times in the night & then when we checked my temperature Thursday morning, I had a fever. I decided it was best for me to go the the hospital early to have my blood work done, then I went for my CT at 10am. and then finished my 25th & final radiation at 11:30am. After that, I knew I would be seeing Dr. Wilke & we could decide what to do about my temp. & my intense pain that was creating my eating problem. Obviously, he felt it was best for me to be in hospital. I have been through a bunch of tests & we are waiting to find out if I have an infection. Meanwhile, I have been getting antibiotics, fluids & now food through my IV. I have also been on Pantiloc to help with heartburn. I have brokedown & used Morphine for the first time in my life to help with the intense pain in my chest......it has been a blessing. Now that my fever has broke, I have stopped my tylenol & cut back on some other medications. I still need the nutrients through my IV, because I am still have a tough time keeping liquid food in my stomach. That is the main concern now!

Dr. Wilke told me that my CT Scan on Thurs. showed that my tumour was smaller & that the rest of my body was clear. So that was encouraging news. As I mentioned in earlier entries, the radiation will continue to work for approx. 60 days after my treatments were done. So, in theory, my tumour will be smaller in December when I go for my next PET/CT Scan.

So that is all for now.....I will update you once things improve.

Day + 81 Happy (Canadian) Thanksgiving!

2006-10-07T17:54:00.000-03:00

Happy (Canadian) Thanksgiving to everyone!!

I have completed 20 Radiation Treatments(RT) so far, & I am feeling good. My fatigue is minimal ....however, it may increase during the next couple weeks or so.....everyone reacts differently to RT. I am starting to have trouble swallowing my food, because my esophogus is directly in the path of my treatment field.....the burning feels like a lump when I swallow. It is not too bad yet.....so I am hoping it won't be too difficult for me to eat Thanksgiving Dinner at Mom's on Monday.....I will find a way to eat her cooking....even if I have to put it in a blender!!!!:) We continue to monitor my blood work every 2nd day....as my WBC remains around 1.4-1.5.....& myANC is around 600...give or take. As long as it stays above 500, we can keep moving ahead with my treatments, without taking GCSF injections.

In my mind, I have a vision that my cancer cells are burnt out already (I am constantly visualizing the radiation killing cancer cells in my chest.....like a video game!!)....& if new ones try to regenerate, the radiation will continue to destroy them for at least 60 days after I am completed radiation.
Dr. Wilke explained to me that if my tumour was measured on the day I finished radiation.......& then measured again 30 days later....it would be smaller.....& then after 30 more days, it would be smaller again.....so that is comforting to me!

I only have 5 treatments left. Monday is a holiday....so I will finish up on Tues., Wed. & Thurs. As it turns out, I will have a CT Scan on Thursday(my last day of treatment) just prior to my final treatment. This has been ordered by my nurse Angie as part of the follow-up to my SCT as per the study I am participating in. I will then meet with Dr. Anderson the following Tuesday, Oct. 17th to discuss the scan& future plans, etc.

In December, Dr. Wilke will send me for another PET/CT scan in Sherbrooke, Quebec. That will be the test that reveals how well the Radiation did its job! As I mentioned before, the radiation continues to work for approx. 60 days after treatment....therefore, this is the reason we wait that long for the scan.

Anyway, that pretty much sums everything up for now! Let me know if anyone has any questions!

Day +76 Week 2 of Radiation

2006-10-02T12:19:00.000-03:00

As, I write this, I have completed 11 Radiation Treatments (RT).....with 14 more to go.

My side effects have been minimal so far, though I was getting quite tired last Thursday & Friday .....most likely from all the driving back and forth fighting traffic(45 mins. to an hour each way) & then trying to find parking at the hospital.....that can be difficult. I was driving myself most of last week, then asked for Mom or Dad to drive me the last few treatments. I will probably, continue to get them to drive, except when I have other plans in between my day appointments.

On Friday, I had an appointment to see Dr. Wilke after my RT....to our surprise, he told me that my White Blood Count was only 1.5 and my ANC was 566. This bloodwork was from last Monday morning and he didn't know what would cause this.....as I had only 1 RT at that point. My ANC was over 2000 a couple of weeks ago! Dr.
Wilke told me he couldn't give RT if my ANC was below 500....so I had to have more bloodwork done Friday morning to see if I would have my treatment in the afternoon. If my ANC was below 500 then I would have to get GCSF injections for the week-end to boost my WBC & then check my bloodwork again. Anyway, my ANC came back at 614....so we went ahead with the next treatment. I am still waiting for my blood results today...to make sure I have a treatment this afternoon.
I expressed some concern to my nurse, that I didn't find out my bloodwork until Friday.....as I was more vulnerable to infection & I might have done some things differently, if I knew my counts.
I also called my Study Nurse, Angie, to ask about my bloodwork concerns.......she eased my mind some when she said it is not uncommon to see a huge drop in WBC & ANC during the recovery process after a Stem Cell Transplant.......she was not concerned by my bloodwork, so I felt much better. Everytime a surprise happens.....it gets your mind going.....so I appreciated getting her feedback.

These photos are of me in the waiting room......my Radiation Therapists setting me up to receive my treatment & then they go outside the room & use the computer to administer my dose.

I will keep you posted......

Day + 69 Radiation Begins

2006-09-25T19:26:00.000-03:00

LINEAR ACCELERATOR
KIRAN & DEE

MOM (IN THE WAITING ROOM.....AGAIN!)

It has been a couple weeks since my last entry......
The first week, I spent trying to get my head wrapped around the idea that I had any activity left in this lousy tumour. I have to admit that I was quite discouraged, to put it mildly, that my PET/CT was positive. However, there is still a good chance, that with intense radiation therapy(RT) it will kill the remaining cells......& hopefully, none of these cancer cells have traveled anywhere else.

Last Tuesday, my Dad, Jasper & I went into "The Camp" for a few days of R&R. I rode my bicycle, read, watched inspirational DVD's, went for walks.....& used the time to prepare myself for these next 2 1/2 weeks of RT.

This morning, Mom & I went to my first appointment of the day....I had to be there for 8:45pm. to register. Then I changed into a Johnny Shirt & housecoat....I got to keep my jeans on. I was brought into my appointment at the scheduled 9am. time. Kiran & Dee (Deanna) are my Radiation Therapists.....for the duration of my 25 treatments. I will also be on the same machine for all the treatments, unless it decides to act up. We have 3 machines that have the capacity to do my treatments. I really like the fact that that same two people will administer my treatment every day....we are already developing a relationship & it will be comforting to have that familiarity.
My first appointment took about 45 minutes.....as they had to get all the kinks worked out....they performed x-rays....so they could use pictures of my bones to help with lining me up properly....they also had to get me positioned properly in my VacLock(a mold of my body to keep me still) , warmed up the shields that protect most of my organs.....surrounding the treatment area in my chest. Once they had me set up to their liking, I received my dose of radiation. I received 2 doses to the front of the chest & one to the back of the chest. As I mentioned before, I will receive 25 treatments over two & a half weeks. I will go Monday-Friday twice a day with 6 hours between treatments on the same day. For those of you who like to know the technical side of things.......I will receive 45 gray(Gy) which equals 4500 centagray(cGy) in total over 25 treatments.
Each treatment will equal 180 cGy....since I am having 2 treatments a day, that means I will receive 360 cGy per day.
To break it down further......Dr. Wilke has designed two fields in my chest & one field in my back......
the larger field in my chest, covers an area that includes my tumour, plus a larger area that covers a good portion of my media stinal area where my tumour used to be when it was larger. He does this, so that he will kill an micro cancer cells that may be there but are not visible via the Pet/CT scan.... the first dose of radiation is for 74 cGy & took approximately 30 seconds to administer.
the smaller field in my chest, zeros in on my actual tumour mass. After the first dose of radiation, a second dose called a "Boost" is administered......this dose of 8 cGy only took a few seconds. (therefore, my actual tumour is receiving a higher dose....74cGy plus 8cGy)
the larger field in my back is the same size as the larger field in my chest, however the dose is 98 cGy. Apparently the dose is higher because it needs more energy to reach the tumour from that position....it has something to do with physics that was difficult to explain.

The machine used for RT is called a Linear Accelerator.

After my first treatment was over, we went over the side effects again.....(I do not feel anything while receiving treatments).....
probably by the end of the week, my skin will start to feel sensitive in the treatment area....like a sunburn.....eventually, it will feel like I have a lump in my esophagus.....I may have trouble swallowing foods....therefore, a liquid diet may by in order. This lump feeling is really just a bad burn to my esophagus.....& food will irritate it while traveling to my stomach.
Another common side effect is "Fatigue"......everyone handles this differently....so we will see.....apparently exercise helps.
Anyway, I will describe any symptoms, as I experience them.

After my appointment, I had to go for bloodwork. Every Monday, I will have bloodwork.....RT also kills good blood cells.

In between appointments, I went for a late breakfast at Mom & Dad's house.....then for a walk with Mom.....then I went home to rest & read a book on my swing.....it was a beautiful warm sunny afternoon.....
At around 2:45pm. I headed back to the hospital picking Mom up along the way.....my appointment was at 3:30pm......it was on time & went smooth....I was home by 4:30pm.

1 day done.....only 12 more to go!

Day + 55 Pet Scan Results & Radiation Plan

2006-09-11T17:59:00.000-03:00

I met with Dr. Wilke (Radiation Oncologist) this morning regarding my PET/CT Scan from the University of Sherbrooke Hospital. We only have the written report so far......they are being much too slow for my liking sending out a copy of the CD with the pictures.....

Unfortunately, my scan appears to still show a reading of 10 SUV (standardized uptake value)in the residual mass in my chest. This means, that there is probably still cancer activity in my tumour. The upside, is that nothing irregular shows up anywhere else in my body. The Pet Scan I had on March 17th had an SUV of 16.....therefore there is a decrease.....
Obviously, I wanted there to be "0" SUV.......we just continue to fight!

Dr. Wilke's plan of action, is to treat me with a total of45 Gray (A measure of absorbed radiation dose. One Gray equals 100 rads, in the older terminology) over 25 treatments. These treatments will occur twice a day for 2 1/2 weeks. He feels that because my lymphoma is being a resistant bugger, that it is better to attack it quickly & hard.....don't give it a chance to multiply. My treatments will be approximately 6 hours apart....therefore, I will go to the hospital first thing in the morning & again at the end of the day. Even if my Pet Scan came back negative for cancer cells, Dr. Wilke was still going to radiate.....the difference being that he would have treated with a dose of 36 gray, once a day for 20 treatments.

The size of my tumour is now: 1.6cmx2.3cmx1.9cm....this is smaller than a CT scan showed on May 25th after my 2 high dose chemos.....I only have 2 measurements on that tumour of: 1.7cmx3.1cm. This indicates that the Stem Cell transplant still did something to the size of the tumour.

Dr. Wilke is hoping to start my Radiation Therapy (RT) next Monday or Tuesday. He really wants to get the CD of my PET Scan in his hands first.....
I also have the "Best Doctors" organization working on getting another copy of the CD for their doctor to evaluate and make recommendations for my case.

Dr. Wilke feels that there is an 80% chance that the radiation will kill the cancer cells in the tumour in my chest.....the concern will be if any cancer cells decide to find their way to another place in my body.....this is why we need to act quick with the RT.
A couple of positive things to mention are:
first, that in the year since my initial diagnosis, my lymphoma has stayed localized &
second, my tumour is the smallest is has ever been.....so hopefully, the radiation will do its job & kill the remaining cells AND that will be the end of it!!

Other than what I have mentioned above, I also had my markings done today. Basically, I had to lay on the table of a CT Scan machine on top of a plastic bag with foam beads inside. This bag (called a VacLock) is used to make a mold of my upper body....air suction is used to help mold the shape. I have been through this procedure twice before....but we hadn't followed through with radiation treatments yet. This time I did not have tattoos as they were able to use the tattoo markings from previous sessions. There are 4 tatoos kind of like the 4 points of a compass. They are just very small black dots...like a pen mark. These dots are used to position my body for accuracy...so that my radiation treatments will hit the correct location of the treatment area......this is basically in the center of the 4 black dots.
Once I was lined up & molded the movable table ran in & out of the tubular shape machine....Dr. Wilke was behind a window, operating the controls that allowed him to set up my field for my future RT's.
Next week, I will go to a different machine to receive my actual treatments. Each treatment will consist of one shot to the front of my chest & one shot in my back....both radiating the area of my tumour. ( I have been told that they are about 2 minutes each)
I will of course provide more details as they happen.

Well, that is about all I have to report today.....I have certainly had better days....but it isn't all bad...& we have to hope that the radiation will finish of the job.

Day + 54

2006-09-10T18:17:00.000-03:00

Physically, I have been feeling stronger every day......I walk & ride my bike regularly.....I am doing more & more yard work & other chores...which allows me to feel more productive & independant.
It is the mental side of things that I am finding the most difficult. This whole experience is never too far from my mind....& I have to make a conscious effort to control my thoughts....& not allow them to paralyze me with fear....so I can have normalcy in my day to day life.
Some days are better than others & I really appreciate those......
As Sarah informed me, this thing called "scanxiety" is very common whenever we face a new PET or CT scan.....so keeping your mind under control at these times is even more challenging!

My Friday appointment with Dr. Anderson was very helpful to me.....he really took time to listen to my questions & his answers were very thoughtful.

The first question I wanted to know was:
Does he feel that a maintenance treatment of Rituximab(Rituxan).....every two months for 1 year..... would benefit me? Does the study I am participating in show any indication one way or the other?
Dr. A feels that in my case, since I have already received 10 treatments of Rituxan over the past year....in conjunction with my chemotherapy treatments.....that Rituxan would probably not do anything further for me. The study is not showing one way or the other whether Rituxan is benefiting as a maintenance treatment in Large Diffuse B Cell NHL.....it will take many patients over several years to know the answer.

Rituxan is still being studied & there are still so many questions regarding its long term effects. It is still a drug & all drugs have side effects....one concern/question about Rituxan is.....what are the long term effects on the immune system? Since it is an immunotherapy drug....& works with our natural immune system.....will it cause problems in this area??

I also wanted to know his opinion on whether he recommends Radiation treatments in my case?
He feels that Radiation Therapy is a reasonable course of treatment for me to pursue.
I've been treated with 11 rounds of chemotherapy during the past year....the last 3 being as strong as you can get.....my tumour is isolated to one location......Radiation may help prevent a reoccurance of my lymphoma. There are of course risks associated with any treatment.......with radiation to the chest we have to be concerned about toxicity to the heart, lungs, thyroid & breast tissue. Radiation will increase my chance of secondary cancer in these areas & other types of damage....ie. like to the coronary arteries of the heart.
Fortunately, my tumour is located more to the right of the centre of my chest so the radiation will only touch a small portion of the right of my heart.

I will know more details tomorrow after meeting with my radiation oncologist...Dr. Wilke. He will use a CT machine to define the size of the area he will treat plus he will determine the dosage of radiation he will apply over a 4 week period. If the PET Scan shows no activity, then he will probably treat me with a lessor amount then if the PET Scan shows positive for cancer cells. The idea here, is to treat with just enough radiation to do the job & hopefully not any more.....as this will help lower the long term risks.

I will update more after tomorrow's appointment.....

Day + 50 PET SCAN

2006-09-06T19:53:00.000-03:00

Sue & I are back safe & sound from our trip to Sherbrooke, Quebec. We stayed at a couple of very lovely campgrounds along the way & really enjoyed travelling with our small truck camper.
On Thursday, August 31st,the day of the PET Scan(http://www.petscan.ca/petinfo.htm), we arrived at the hospital around 10:30am(didn't want to be late).....took care of the administrative details like obtaining a hospital card & providing the necessary paperwork from Nova Scotia MSI showing that they would pay for the test.
While waiting for my appointment time, we sat out in the parking lot with the truck camper popped up & visited with our friend Lucien who drove down from Montreal for the day. At about 1:45pm. we started to make our way to the building where the PET machine is located.....filled in some forms .......at 2:30pm. the technician brought me to a room to hook my arm up to an IV Cath....tested my blood sugar level....then injected me with the FDG subtance....which is basically a radioactive sugar. After this ingredient was injected in my body, I sat around for approximately 1 hour...to allow time for the substance to find it's way to areas in my body that have fast growing cells...ie. cancer. After an hour, I was taken into the room with the machine.....I lay down with my hands over my head....& was told to lay perfectly still. I was laying on a movable bed that slides through 2 different cylinder sections. The first section is where the 2 CT scan pictures were taken.....the second cylinder is where the PET pictures were taken...there were approximately 8 pictures taken over 25-30 mins. Afterwards, I waited for a few minutes while the technician checked to make sure the test was readable.....then I was done.
We checked into a motel near the hospital, went for dinner with Lucien & then to sleep early. The next morning we were up early & on the road by 7:30am.....we took a scenic drive from Quebec - Vermont - New Hamshire - Maine & ended up in Cambridge Narrows, New Brunswick. We stayed Friday & Saturday night with our friends David & Sandy....headed home Sunday.
I have not heard the results from my PET Scan yet...but expect to hear from my Radiation Oncologist soon.
I went for bloodwork today & will see my hematologist on Friday morning to discuss some of my questions.
That is all I have to report for now....

Day + 40

2006-08-27T08:55:00.000-03:00

Quote of the Day:
"REMEMBER THAT LIFE IS VERY SIMPLE. YOU CREATE YOUR EXPERIENCES BY YOUR THINKING AND FEELING PATTERNS."
-Louise L. Hay

This past Thursday, I received a phone call from the Centre Hospitalier Universitaire De Sherbrooke in Quebec (University of Sherbrooke Hospital).
I was assigned a PET Scan appointment time for next Thursday, August 31st at 2:30pm. This test will indicate if there has been any change in the size of my mass & if there are any cancer cells currently lurking around.

We will probably make a holiday out of this trip to Quebec. I think we will take our truck camper & drive through Maine & New Hampshire on the way to Sherbrooke, as it is very close to the US border. On the way back from Sherbrooke, we may head to Vermont as I want to do some short hikes in the White Mountains......& we may also head to Mount Desert Island & spend some time in Bar Harbor & Acadia National Park ( I really enjoy this place as there are many short, scenic hikes).

We could also fly to Montreal & then drive to Sherbrooke, but I think we are leaning towards the first option.

Anyway, I am getting stronger each day & hoping for a full recovery!

Day + 32 Hickman Line is now gone!

2006-08-19T10:17:00.000-03:00

This first photo was taken on Wednesday, the night before my "Hickman Line" removal......we have been through so much together.....it saved me a whole bunch of pain from needles for IV's & bloodwork!!! It has certainly made it more challenging for me to have showers & baths over the past 4 months or so........as it was important not to get it wet due to increase risk of infection! Though.....I would say the Pro's of having it, outweighed the Con's!!!

The second photo is Dr. Nebojsa Sparavalo starting to pull my line out & posing at the same time with Carlina & I.....he was a "master" line puller .....as I had no pain & couldn't believe when it was all over!!

The third & fourth photos show what the line looks like outside of me......

Quote of the Day:
"NOBODY TRIPS OVER MOUNTAINS. IT IS THE SMALL PEBBLE THAT CAUSES YOU TO STUMBLE. PASS ALL THE PEBBLES IN YOUR PATH AND YOU WILL FIND YOU HAVE CROSSED THE MOUNTAIN."
-Unknown

In addition to my line pull on Thursday, I received an envelope in the mail, from my Radiation Oncologist's office (Dr. Derek Wilke) & they have started the process to arrange a PET Scan for me at the University of Sherbrooke in Quebec. Currently, I am waiting to hear from Sherbrooke for an appointment date & time. If I don't hear early next week, I will call them to find out waiting times.
I was very pleased on Thursday, to know that I am going to have a PET Scan sooner rather then later.....
in a May meeting with Dr. Wilke, he expressed that it would be helpful to him if I had a PET Scan completed prior to any radiation treatment. The PET Scan will show if there are any active cancer cells in my remaining mass & it will also give a 3 D picture of the mass that can be used to plan out the size of the radiation field used in treatment.
Radiation is still up for discussion.....but I am probably leaning towards having it.....as I want to do what I can to prevent reoccurance.

I have been in touch with "Best Doctors" again & they are going to arrange another consultation with the same two specialists used on the previous consultation. I want to get their opinion's on Rituxan as a maintenance treatment & on whether or not they recommend radiation in my case.
I also want to know if they have any other recommendations for my treatment at this point in time. Hopefully, they can help me source out Rituxan, if I decide to move forward with treatment.

My next appointment with my primary hematologist (Dr. Anderson) is September 8th, as he is on holidays until that week.....so I will be discussing all my options with him at that point.....& hopefully, I will have some of my own information to bring to the meeting. i.e. PET Scan results would be nice

That is all I have to report medically on my latest situation.

Yesterday, I had a wonderful afternoon & evening at the Aylesford Zoo with Coleen & her two children, my cousin Karen & her nephew plus my Aunt Madeline & her grandson.....
It is a small zoo run by a husband & wife team who have a passion for their animals......it is such a lifestyle for them.....I was especially fascinated at feeding time watching the women owner walk freely in the cages with the lions, panthers, leopards, lynx's, & the bear.......she had hunks of meat that she hand fed to them .......she is the only person who can feed them this way......it is quite the site to see. She explained everything she did & freely & patiently answered every question we asked of her......she is such a wealth of knowledge on these animals & I could have picked her brain all day.

It truly was a great day!!

Day + 28

2006-08-15T13:13:00.000-03:00

WBC 2.5, HGB 105, PLT 154, ANC 1260

Quote of the day:
"STRENGTH IS NOTHING MORE THAN ENDURING LIFE - TO BE ABLE TO SURVIVE THE HEARTACHES AND AGONIES WE GO THROUGH WITH OUR HEADS HELD HIGH. SOMETIMES JUST WALKING THROUGH ADVERSITY TO GET TO THE OTHER SIDE IS A SIGN OF STRENGTH."
-Sylvia Browne

Unfortunately, I did not win the coin toss.....so if I continue to be part of the study, I will receive no further treatment, unless I have a reoccurance of disease.

Currently, I am exploring my options. I am looking at the possibility of sourcing out the Rituxan & paying for it myself. I have already received Rituxan as part of all my previous chemo treatments, with the exception of the high dose chemo prior to STC. These treatments are standard of care & covered by the goverment.

The Rituxan as a "maintenance treatment" is currently not covered by the government for my type of Large Diffuse B Cell Non Hodgkins Lymphoma, because the trial needs to be completed to show that Rituxan is effective in decreasing reoccurance of disease after SCT......before they will agree to cover the costs......& Rituxan is very expensive.

Rituxan did get approved as maintenance therapy for patients with Follicular NHL as per this news article:
.-- Rituxan(R) doubles overall survival for patients living with common form of blood cancer -->>MISSISSAUGA, ON, Aug. 10, 2006 /CNW/ - Hoffmann-La Roche Limited announced today that Health Canada has approved Rituxan(R) (rituximab) as maintenance therapy for patients with follicular non-Hodgkin's lymphoma (NHL) who have responded to initial treatment. Rituxan was shown in a major study originally presented in December 2005 to increase the length of time from end of initial treatment to complete relapse from 15 to 52 months, more than tripling progression-free survival. Furthermore, the therapy doubles the overall survival (48 per cent) for patients with this form of NHL, compared to standard disease management, which is currently "watch and wait."

Dr. Couban is now handing my case back over to my primary hematologist....Dr. Anderson.
Dr. Anderson is going on holidays for 2-3 weeks, & I am trying to get an appointment with him ASAP to discuss my options.
As part of the study, I will not have any CT, Gallium or PET Scans completed until mid October......I may talk to Dr. A. about moving that up sooner so we know what we are dealing with?....should we do radiation?.....should I definitely pursue taking Rituxan?
I want to feel comfortable with the direction we decide to take next, & I need some input from Dr. Anderson to help me with this.
In the mean time, I have been reading as much as I can on the internet. I may decide, at some point to contact "Best Doctors" again to see what they have to say about Rituxan......I also want opinions on whether I should do Radiation or Not??? If so.....WHEN?

So many questions......??

Once I find out anything further, I will do another update.

Day + 27

2006-08-14T19:59:00.000-03:00

Andrea, Jasper & I at Lawrencetown Beach on Saturday.......we didn't last very long because it was a bit too cold & windy for laying around at the beach.....but I did throw the "Dummy" in the water for Jasper a whole bunch of times to burn off some of her energy!!

Sue & I enjoying another fire at the "Pit" Saturday night with Andrea & Sue.

Quote of the Day:
"IF YOU'RE DOING THE RIGHT THING, IF YOU'RE NOT HARMING YOURSELF OR OTHERS, YOU NEED NOT BE CONCERNED WITH WHAT OTHERS THINK. YOU'RE FREE!"
-Brian L. Weiss, M.D.

I had already written most of my entry for this blog & lost it when my computer decided to shut down.....so I am going to keep this one short!

My week-end was enjoyable.....walks at the beach, fire in the pit with A&S, a lovely afternoon with Coleen driving through villages on the Eastern Shore, and a wonderful meal at Mom & Dad's on Sunday evening...

Today, I spent most of it researching Rituximab.....more specifically, I was reading studies about how effective it is as a maintenance treatment after High Dose Chemo & Autologous Stem Cell transplant. Maintenance therapy refers to therapy used following initial treatment in an attempt to keep cancer from progressing or recurring. Some of the studies are still in progress,(i.e. the study I am participating in)........ initial results show lots of promise.

Trade Name(s):Rituxan
Type of Drug:Rituximab is a monoclonal antibody that belongs to the general class of synthetic substances called biologic response modifiers. It is used to treat certain lymphomas that have lymphocytes with the CD20 receptor.
How Drug Works:A monoclonal antibody is a protein that fits like a lock and key with a protein on the cancer cell. Rituximab (antibody) attaches to the CD20 protein (antigen) on certain cancerous lymphocytes (white blood cells). Once it attaches to the cells, it brings other immune cells to help kill the cancer cells.

Information:
http://www.asheducationbook.org/cgi/content/full/2005/1/321
http://patient.cancerconsultants.com/nhl_cancer_news.aspx?id=35269

Tomorrow, I will find out whether or not I will receive Rituximab every 2 months for the next year. PLEASE SEND POSITIVE THOUGHTS MY WAY TOMORROW.......AS I REALLY WANT TO RECEIVE THE MAINTENANCE TREATMENT OF RITUXIMAB FOR THE NEXT YEAR......& BASICALLY IT IS ALL DECIDED BY THE FLIP OF A COIN!!!!

Day + 24

2006-08-11T09:01:00.001-03:00

Last Sunday was a real treat.......the weather was perfect.....the setting was magnificant....& the company was great! Thank-you Maureen for having us out to your cottage for the afternoon. Before my Stem Cell Transplant, I didn't think I would be able to enjoy much of what was left of the summer........so this was a pleasant bonus!!!

Quote of the Day:
"THE UNIVERSE TOTALLY SUPPORTS EVERY THOUGHT YOU CHOOSE TO THINK AND TO BELIEVE. YOU HAVE UNLIMITED CHOICES ABOUT WHAT TO THINK. CHOOSE BALANCE, HARMONY, AND PEACE, AND EXPRESS IT IN YOUR LIFE."
-Louise L. Hay

These past few days have been very low key.....this may be the first time in my life (at least as long as I can remember) that I have given myself total permission, without guilt, to relax totally.....sleep when I want.....read without thinking about all the other stuff I could be doing. I believe that this rest will help my body recover faster & build the strength to fight any cancer trying to survive in my body. Rest also helps my mental and emotional well being so that I can maintain a more postive outlook each day.
I also walk every morning & sometimes in the evening too.....& starting next week I will be adding more exercises on a regular basis.

I am also back doing my daily supplemental program.......
Vitamins have been part of my daily lifestyle since 1998.
In March, I remember sitting in my hotel room in Vancouver.....trying to recover from the news that my tumour was still active with cancer.
Coleen & I had spent the afternoon with my Uncle Terry & Aunt Tish.....we were so thankful that they were there to support us when we found out the bad news.....
anyway, after they left for home, Coleen & I went for a very long walk so I could digest what had happened that day! I cried for quite a while & Coleen comforted me.....eventually I stopped crying.....my brain kicked into gear....& I started thinking about what I could do to help myself. At that stage, we were told that Radiation was going to be my next step in my treatment......therefore, I decided to do three things.

The first thing I did, was e-mail my Radiation Oncologist from the hotel room to tell him that I would need to start Radiation ASAP.....I knew he was often in on the week-ends & I thought this would give him a chance to set things up quickly, as this was a Friday & I wouldn't be home until Sunday.

The second decision I made was to see a Naturopath ASAP. I wanted some guidance on how to set up a program that would help minimize potential side effects from the chemo I already had, plus the radiation, I thought I would be getting. I have read lots of books over the years about diet & supplements, and as many of my friends know, I have always been passionate about this subject. Anyway, I decided that at this point I needed help from an expert.......someone who could tell me exactly what I should take, how much, & why. I was running out of energy to figure it out myself.

The third decision I made, was to call my nurse with the "Best Doctors" program so I could tell her the latest update from Vancouver. The Best Doctors program is a benefit offered by my health plan in which I can get second opinions as to what is the best treatment for my disease. I had consulted them, when I had to make a decision on whether I should have radiation or not. This decision was left in my hands & I needed more information in order to make an informed decision. Anyway, all my records had been released from my hospital and sent to 2 different top doctors in the U.S. One was a Oncologist/Stem Cell specialist in Nashville, Tennessee & the other was a Radiation Oncologist in Boston, Mass. Once, these doctors, were updated about my active tumour plus the fact that it had increased in size,......they were recommending SCT. Once my hematolgist, Dr. Anderson at the QEII hospital & Dr. Connors at the B.C. Cancer Ctr. found out that my tumour had increased in size, they too recommended SCT. Plus all the other Hematologist's at my hospital discussed my case....& they all said SCT.
So, the great thing about 2nd, 3rd, 4th etc.....opinions....is that when everyone is recommending the same thing.....one has no doubt about their choice!!!

The reason, I wanted to talk about these things, was to say, that I found out that the best way to deal with difficult news..... is to feel all the emotions that come naturally....vent....then figure out all that you can do to help your self or others that are part of your team. It is so important to be an active participant in your care.......mistakes do happen & things do get missed. You need to be aware of what is happening and why.....what are your options....
It also is important to feel you still have some control over your disease or situation......because when you get diagnosed with an illness.....you feel a loss of control & you feel that your life is in the hands of a bunch of strangers......at first you can feel helpless.....but later you can take back some control. It is important to feel you are making a contribution as part of a team in doing everything you can to get better & to improve your quality of life.

Day + 21

2006-08-08T18:58:00.000-03:00

HEY! LORI/LAURIE FLOAT @ THE NANTON PARADE!!!!
THANK-YOU FOR THE ENCOURAGEMENT :)........!!

WBC 2.6, HGB 103, PLT 156, ANC 978 (AUTO) & 1404 (Manual)

Quote of the Day " WHAT YOU DISMISS AS AN ORDINARY COINCIDENCE MAY BE AN OPENING TO AN EXTRAORDINARY ADVENTURE. "
-Deepak Chopra, M.D.

Sorry for neglecting my blog during the past few days......the week-end kind of got in the way!
The weather was beautiful.....I spent time resting & reading on my swing......did a couple small house projects....went to my neighbors cottage on Sunday afternoon......did lots of napping & going to bed early. Monday was a holiday......I watered the garden with a brand new long handled hose adapter..... which gave me a sense of accomplishment. :)
My day usually involves accomplishing something & then resting or napping on and off all day. I have been getting up early in the mornings and walking a mile or two, then stretching & doing some light arm weights......when I am finished, a nap usually follows. As time goes on, I will be needing less naps. It is very important to listen to my body.....rest when tired.....this really helps in the healing process.

Last night & early this morning we had another thunder & lightening storm with lots of rain......restless night & I woke up feeling very tired.
Dad took me to the hospital for 8am. this morning. Today, I had blood work & my Hickman line cleaned. My bloodwork only has to be done once a week now & after next week, my Hickman line will probably be yanked, so I will have to start getting poked in the arm once a week for the blood work.
After lunch, I fell a sleep for most of the afternoon.....now I am about to head out for a dog walk, as I didn't have a chance to walk this morning. It is definitely a goal for me to walk everyday.

Don't worry, if I don't do an entry everyday......I may not have too much to write about. I will definitely report on anything important as soon as it happens.

That is all for now!!

Answer to Sarah's Questions

2006-08-05T19:53:00.000-03:00

The reason my blood work had such a huge discrepancy on Thursday, was nothing more than a lab error.......OR it may have happened during the collection process.....the blood may have been diluted with fluid when the nurse flushed my line. When the results came back with such a large drop, my nurse immediately figured it had to be incorrect. The only way my HGB would have dropped so significantly, would be if I had some sort of bleed.....anyway, we were pleased when it all came back OK!!

I didn't have ICE for my first 2 high dose chemos.
The standard of care in Canada is R-DHAP for NHL & Hodgkins Disease....which is made up of Cytarabine, Dexamethasone, Cisplatin, plus or minus Rituximab (Rituxan). I believe some of these drugs are the same as ICE.

As I mentioned in an earlier post, I am part of a Phase III Study Number: LY.12.

The first part of the study is being done to compare two different combinations of chemotherapy to see which is the better salvage chemo. This study compares the standard treatment listed above (R-DHAP) vs. (GDP).....this consists of Cisplatin, dexamethasone,gemcitabine, plus or minus Rituxan.
The drug gemcitabine is similar to cytarabine in the way it works against cancer cells and the side effects of gemcitabine may be less severe than the side effects of cytarabine.
Participants in the study are randomized to have one of the above treatments.....I was randomized to receive R-DHAP which is administered on an inpatient basis. GDP is done on an outpatient basis. Fortunately, I responded very well to R-DHAP.

The second part of the study randomizes patients with CD20 B Cell lymphoma to either receive Rituximab once every 2 months for 1 year or not receive further anti-lymphoma treatment unless the lymphoma comes back.
Personally, I am strongly hoping to receive Rituximab......so I will need everyones strong positive vibes on August 15th.

I hope that answer's your questions Sarah. I do have a web site of the study somewhere if you want to know more ....if I find it, I will add it to this post later for the information of others aiming for Stem Cell Transplant..

Day + 18

2006-08-05T15:19:00.000-03:00

Quote of the Day:
"HOW YOU TREAT PEOPLE- WHETHER IT BE AN OLD FRIEND OR A TELLER AT THE BANK- IS INDICATIVE OF HOW YOU CAN EXPECT PEOPLE TO TREAT YOU."
-Deepak Chopra, M.D.

There is no medical news to report again until this coming Tuesday, when I go for blood work & a cleaning of my Hickman Line....so until then....my entry's will be more general.

Yesterday, Mom spent the day with me at my house. It was a rainy day, so we decided the best way to spend it would be to work on a puzzle & play some crib. In between, these strenuous activies, I napped!!! Does that sound like a vacation or what! Mom prepared my meals & left around 4:30pm.....I had another nap....
After working all day, Sue prepared a delicious supper of Salmon Shish Kabobs & Rice.....I am somewhat useless these days, because I get tired & dizzy quite easily when I attempt to do things for myself.....WHAT AN EXCUSE!! ......But it is true.
Almost every time I see someone for the first time since my transplant, they say something like "You look great!".......but the truth of the matter is that my insides aren't looking or feeling as good as my outside.......my counts are still well below normal & my immune system is still very vulnerable. Like I said in earlier posts, many people take up to a full year & sometimes more to fully recover from a Stem Cell Transplant......though, I do hope to be back in full swing earlier than a year! Until that time, I may not be my smart ass self all the time.....& I will improve my listening skills since I won't always be able to talk as much as I usually do!!!.......but that is probably a good thing!

The biggest difficulty I am going to face will be my fear of recurrance. I have to control this fear so that it doesn't control me. I have to tell myself everyday & several times a day that I will get better......but it is hard sometimes when you are tired & feeling weak.....or when a tickle of a cough gets your imagination going ( a cough was a major symptom of my original diagnosis )......it will continue to be a challenge keep negative thoughts away & to try to enjoy each day to the best of my ability.

Anyway, today was a very good day! We watched a movie this morning, Sue made a delicious breakfast & we worked on the puzzle. The sun came out part way through the day.....I did one productive job in helping Sue attach a hose holder to the side of our house.......now we will have a hose handy for me to water our gardens in the front of the house. Sue mowed & fertilized the lawn......& now we are heading off to Mary's house (my sister's mother-in-laws)for her 65th birthday party. Mary & Chummy (her husband) were the one's who picked out & planted our garden just before I went in the hospital......we are very appreciative that they took the time to do that for us!!!!

That is it in a nutshell!!

Day + 16

2006-08-03T21:03:00.000-03:00

WBC 2.1, HGB 101, PLT 107, ANC 527

Quote of the Day:
FOR THIS DAY, ACKNOWLEDGE THE RESTORING POWER OF HOPE. DIRECT THAT POWER TO BLESS ALL THAT NEEDS HEALING IN YOUR LIFE, INCLUDING YOUR NEGATIVE ATTITUDES AND DISAPPOINTMENTS.
- Caroline Myss and Peter Occhiogrosso

We had a bit of a scare this morning, as my 1st set of bloodwork came back with a WBC of 1.3, HGB 70, & PLTS 61.......when your HGB drops below 80, a blood transfusion is required. Obviously, we rechecked the bloodwork & the numbers were all up, as per above. Finally, my ANC is over 500!

At the hospital, I had my 2 hours of Bolus & then I was fortunate enough to get into see Dr. Couban before noon......therefore, I didn't have to come back for my scheduled 3:20 appt. He once again expressed how pleased he was at how I have handled the Stem Cell Transplant. Now it is a waiting game to see if we will get the results we are looking for.
Around "Day + 60" I will have a CAT Scan & a Gallium Scan to see where things stand. If those tests show negative for Cancer, then we will set up an appointment in Sherbrooke, Quebec, for me to have a PET/CT Scan.........this is a more accurate test than a Gallium Scan. It will show if there is any active cancer cells in my tumour.

I see Dr. Couban again on August 15th...... as I mentioned in earlier postings, I am participating in a 2 part study in which the 2nd part is a flip of the coin to see if I will get a follow up treatment of Rituxan. If I get the side where I receive Rituxan, it means that every 2 months for 1 year, I will get Rituxan by I.V. The study is trying to show whether or not the Rituxan helps prevent recurrance of lymphoma. In order to be eligible for the Rituxan, my original cancer cells had to be CD 20 positive(which mine are).....this is a type of antigen attached to the cancer cells. If I don't win the toss, I will have no follow-up treatment.

Anyway, on August 15th, Dr. Couban will pull my Hickman line, if I am not going to receive Rituxan.....he feels that a patient should only leave the line in as long as it is needed. If I am not to receive Rituxan or blood products, then it should be pulled. I guess other doctors think differently......

Well, I am home tonight & looking forward to sleeping in my own bed.

Day + 15

2006-08-02T14:46:00.000-03:00

WBC 1.8, HGB 106, PLT 90, ANC 416

Quote of the Day:
TRY TO AVOID THINKING ABOUT WHAT YOU'RE NOT: "I'M NOT HAPPY, NOT RICH, NOT GOOD-LOOKING," AND SO ON. INSTEAD, THINK ABOUT WHAT YOUR ARE:
"I AM JOYFUL; I AM PROSPEROUS; I AM BEAUTIFUL." YOUR SELF-ESTEEM WILL RISE IMMEASURABLY.
-SYLVIA BROWNE

Last night we had a "Thundering & Lightening" storm along with some rain.......it woke me up a few times.....which is maybe why I woke up feeling exhausted today. Mom helped me get cleaned up this morning & I ended up vomiting.....which I thought was behind me.
Anyway, we made our way to the hospital for 8:30am. for my bloodwork & my 2 hours of bolus.......I felt not so good the entire time & could hardly wait until I was back at Mom & Dad's for a nap. I was so exhausted & nauseated that I slept about 3 1/2 hours.....so much for short naps!

As I write this, I am feeling somewhat better but not 100%.........I am not complaining as I know that this is all part of the recovery process.......which no matter how much I try, will not happen over night.

Mom is making a stuffed chicken dinner & Sue will be joining us after work. I get to see the dogs again!!
I have decided to stay here at Mom & Dad's house one more night, so it is easier to get up & go to the hospital for 8am. My nurse, Allison, is trying to bump up my appointment to see Dr. Couban after my blood work & I.V. ....otherwise, I will have to make another trip to Halifax at 3:20pm tomorrow.......which is more exhausting & inconvenient.
Dr. Couban told me on Monday(when he discharged me), that he may pull the "Hickman Line" out of my chest tomorrow......that means I can shower freely again......& maybe manage a swim this summer!!! Yippee! It also means, that I will have to start getting poked in the arm again, for my blood work.......OUCH......my veins are now so tough that only the best blood gathers can do it with out hurting me too much.

There is not much else to report today other than my counts are looking up.....my ANC is getting very close to 500.....

Day + 14

2006-08-01T17:09:00.000-03:00

WBC 1.5, HGB 105, PLT 61, ANC 255 (Auto Count)

Quote of the Day:
WHAT'S THE BIG HURRY? YOU'RE NOT EVER GOING TO GET IT DONE, SO WHAT ARE YOU RACING TOWARD? EVERY SINGLE ACTIVITY THAT YOU'RE INVOLVED IN IS FOR ONE PURPOSE ONLY, AND THAT IS TO GIVE YOU A MOMENT OF JOY. LIGHTEN UP. LAUGH MORE. APPRECIATE MORE. ALL IS WELL.
- Abraham-Hicks

It is great to be out of the hospital! Dad barbecued some chicken breasts last night (I enjoyed the smell of the barbecue).....Mom baked some sweet potatoe & steamed some green beans for supper last night & I did a great job eating everything on my plate. I even managed a small piece of wild blueberry pie & ice cream.......the blueberry's came from our property.....compliments of Sue M. doing the picking.....mmmm mmmm good!
Slept like a baby last night without all the hospital interuptions. Dr. Couban was definitely correct in sending me home for a faster recovery!!!

This morning Dad drove me to the hospital Medical Day unit on the 4th floor of the Victoria Building for my 7:30 am. appointment. Allison is my primary nurse this week & she took my blood and then hooked me up by I.V. for 2 hours to receive Bolus ( Saline & Liquid ). I received my blood counts back around 10am. & was on my way home by 10:15am. I was lucky today, because my nurse told me it can take up to 4 hours to get the counts back!!

The rest of my day went very well.....Dad & I dropped by my house to pick up some clothes.....& while we were there, we decided to water our new garden & my "Mount Everest" tree.......it felt great to be at home....outside.....enjoying the sunshine & nature!!
After lunch I needed a nap.....it is recommended that I take a few short naps or rests during the day, rather than long ones......& only enough that I can still sleep through the night. Andrea, Sue M. & Denise stopped by for a visit after my nap....which I enjoyed!

Tomorrow, I am going to start excercising to get my strength back.....as per instructions from my medical literature. It is recommended that I start doing some cardio to strengthen my heart.......weights & stretching for the muscles. For me this is not a hardship, as I love to exercise......this stuff is right up my alley!!!

Tomorrow, is also the day I get to go to my own home.......in my own bed!!......though, I have been very comfortable at Mom & Dad's.....they take great care of me! Mom will stay with me during the week days to help with my meals & appointments. Sarah asked me about the dogs....it is OK for me to be around my dogs but not to sleep with them in the same room....if I pet them, then I must wash my hands....& they are not to kiss my face. As I am writing this, the dogs are running around in my parents back yard waiting to see me for the first time since being in hospital......I am very excited!!! .....I must go now!

My appointment for tomorrow is 8:30am. for bloodwork & Bolus!

Day + 13 "GOING HOME"

2006-07-31T09:29:00.000-03:00

WBC 1.2, HGB 95, PLTS 33 ANC 192 (Manual Count)
Quote of the Day:
"LOVE IS THE ENERGY FROM WHICH ALL PEOPLE AND THINGS ARE MADE. YOU ARE CONNECTED TO EVERYTHING IN YOUR WORLD THROUGH LOVE."
-Brian L. Weiss, M.D.

SURPRISE!!!..........I am going home today.
Apparently, Dr. Couban (my Stem Cell Transplant doctor) feels that one recovers better at home......so once he feels that engraftment is in full gear & there are no complications he prefers to discharge the patient.........even before the ANC reaches 500. Other doctors may do things differently.......
My platelets took a huge jump from 16 to 33 today.......this is a huge indicator that my bone marrow has kicked into full gear & my numbers will quickly rise in the next day or two!

They took me off my antibiotic, panteloc & acyclovir so there is not much else I need to be in hospital for.....so home it is!
I am going to stay at Mom & Dad's for a couple of days until my house gets cleaned on Wednesday morning. I will have to travel to the hospital every day this week to have my blood checked & to receive some Bolus- (saline & fluids) by I.V.
On Thursday, I will see Dr. Couban as a follow up to my transplant.

My nurse gave me a "GOING HOME" booklet.
The main headlines of the book are:
Moving from the Hospital to Outpatient Care
Caring for Myself After Transplant
Possible Comlications After Transplant
Life After Transplant
Medications

That is all for now.....

Day + 12

2006-07-30T09:15:00.000-03:00

This photo of Sue, Jessie & Jasper was taken June 30th, 2006. We had taken our truck camper on a short trip to the Annapolis Valley prior to my hospital admission. This particular day we stopped at the Kentville Agricultural Centre to walk the dogs. It was the most beautiful hike along a small river, deep in a ravine lined on both sides with very old trees.......it was an unexpected "Paradise"!!!!!

This photo of Dad and Jasper was taken on July 5, 2006. Dad, Jasper & I went into "The Camp" for a couple nights just to have a father/daughter getaway! We had such a relaxing time.....good walks, talks & eats....it was another great way to prepare for the SCT!

There were many things I wanted to do before being admitted to hospital. I tried to fit alot of summer activities into the short time period prior to SCT.......as I didn't know what I would be able to do after I completed my hospital stint.....or even how much of the summer I would spend in the hospital.

Everyone has to find their own way to prepare for a major event in their life......I believe that it can only help in your overall performance & ability to handle the challenge when the time comes.

WBC 1.1, HGB 92, PLTS 16 ANC 114 (Auto Count)

Quote of the Day:
"LIFE IS WHAT WE MAKE IT, ALWAYS HAS BEEN, ALWAYS WILL BE."
- Grandma Moses

Day + 11

2006-07-29T12:52:00.000-03:00

"THE CAMP" - My favorite getaway........secluded, quiet, peaceful, heaven on earth.....looking forward to my next visit.

WBC 1.0, HGB 97, PLTS, 14 ANC 80 (manual count) ANC 140 (Auto Count by machine)

Quote of the day:
"IN LIFE IT'S NOT YOUR APTITUDE BUT YOUR ATTITUDE THAT GIVES YOU ALTITUDE."
- Bill Hunter (Founder of the Edmonton Oilers)

It was a very low key day today as I felt tired most of the time. Mom & Dad visited for the afternoon......I ate a frozen pasta dinner for lunch......managed a good hallway walk.....a restful nap & then it was time for them to go.

Sue is going to try to find a good movie to rent for tonight & then we will call it a day!

I am definitely starting to count the days until I might be able to go home......looking forward to sleeping on my covered swing.....anxious to view my newly planted garden in the front of my house......checking out my Red Maple tree.....sleeping in my own bed.....seeing the dogs.....just to name a few things!

There are 2 ways to measure my ANC. The first method is called the Auto Differential......it is an easier & the most often used method.....it is done by machine.
The second way to measure ANC is manually. This is when a person in a lab counts the neutraphils one unit at a time. It is the most accurate method but takes more time.
Anyway, today my manual counts showed an ANC of 80 and the auto diffential showed an ANC of 140. It is not clear to me yet which number the doctor will use to decide when to release me from the hospital?? Remember, my ANC has to reach 500 before they will discharge me as a patient.

Well, that is all for today.....hopefully tomorrow brings a large jump in my blood counts!!!

Day + 10 Joy to the World!!!

2006-07-28T16:48:00.000-03:00

MOM posing in from of my white board in my new room.

WBC 0.6, HGB 95, PLTS. 15, ANC 55.8

Quote of the Day:
"IT'S EASY TO GET LOST IN ENDLESS SPECULATION.........SO TODAY, RELEASE THE NEED TO KNOW WHY THINGS HAPPEN AS THEY DO.
INSTEAD, ASK FOR THE INSIGHT TO RECOGNIZE WHAT YOU ARE MEANT TO LEARN."
- Caroline Myss & Peter Occhlogrosso

Great news today.......... as it appears that my engraftment process has started! My ANC jumped from 4 to 55.8 overnight. Hopefully, we will see even larger numbers tomorrow.....as once they get going, they usually start to multiply by leaps and bounds!!!! Both my doctor's & my nurses seemed very pleased with my numbers......

I managed to eat some oatmeal for breakfast......a mini tub of ice cream......a small decaf. coffee......a few spoonfulls of some chicken stew for lunch....& now I am eating some Macaroni & cheeze!!! So my appetite is good today!

Sue stayed with me last night.....we watched the movie "Black Beauty".....we both enjoy movies involving animals. Today, Sue stayed until just before 2pm. when my blood counts came in. We were slow getting the results because my early morning collection clotted & had to be redone.

Andrea R. is taking her turn at a shift tonight......should be lots of laughs!!! Sue is back here on Saturday night.

So far, I have done very well in the infection department. After my first fever, they started me on a general antibiotic that seems to have done the trick. Most people, have more than 1 spike in fever & more than one infection.....so they tell me I am unusual to have had only one to date. In the early days, post transplant, 80% of infections come from bacteria & virus's already present in my own body.......once the infection fighters are gone....we tend to see the fever & the infection(s).

After my engraftment takes place, & my ANC reaches above 500, my biggest risk of infection will be from those germs I might get from others. The biggest preventer of infection is good hand washing practises......by myself......by those who are to come in contact with my environment. Food preparation techniques are also very important. Thoroughly washing hands before, during and after food prep............properly washing food......properly cooking food & properly storing food........all in prevention of bacteria reaching my mouth! The hospital recommends that I don't eat any raw vegetables........raw fruit except those with a thick rind such as banana's & oranges......... No fast food & it is best to avoid eating in restaurants at all.......FOR 100 DAYS POST TRANSPLANT!

So today was a positive day & one to celebrate!

Day + 9 NEW HAIR

2006-07-27T17:32:00.000-03:00

NEW HAIR DUE TODAY!

BEFORE PICTURE!

Deana starting the trim process with steralized clippers.

Very Flattering photo that mom took!

Almost done!

The New Look.

The Alternative Look!

WBC 0.4 HGB 93 PLTS 13 ANC 4

Quote of the Day:
"ILLNESS CAN BE A TEACHER, COMPANION, OR CHALLENGE - BUT NOT A PUNISHMENT. STILL, SOMETIMES ITS MESSAGE ISN'T CLEAR. IGNORE THE ILLNESS. LOOK FOR STIMULATION IN THE KNOWLEDGE THAT YOU CAN HEAL IN AN INSTANT."
- Caroline Myss & Peter Occhlogrosso

Well, obviously, there wasn't any upward movement in my white blood counts or my ANC. My platelets have dropped dangerously low to where I might need a transfusion tomorrow.
I guess that I have to continue to wait patiently until the Stem Cells start to mature & do what they were put into me to do.

I am still not able to eat or drink much.....my nurse told me that could go on for another 2 weeks & not to worry about it. Good thing I listened to another patient who had a previous transplant.....he suggested it was a good idea to gain weight prior to SCT. Well, I gained at least 10 lbs. leading in & have already lost all that & will continue to lose more. I call it "The Stem Cell Diet!"

That is all to report for now......will add more when there is more news!

Day + 8

2006-07-26T17:13:00.000-03:00

WBC 0.4, HGB 95, PLTS 21 ANC?

Quote of the Day:
"MOST PEOPLE WHO SUCCEED IN THE FACE OF SEEMINGLY IMPOSSIBLE CONDITIONS ARE PEOPLE WHO SIMPLY DON'T KNOW HOW TO QUIT?"
-Robert H. Schuller

Today I woke very tired.....after a restless, interupted sleep....fatigue is a big part of this process & will continue for a long time to come. My Stem Cell doctor usually tells his patients to expect to be a full year before totally returning to normal. I expect to be recovered well ahead of that time....

After trying to eat about a 1" piece of banana plus some diluted O.J., my heartburn worsened & the next thing I new, it all came up again! O.J. is really too acidic to drink when the lining of your esphophagus tract is gone.....anything non liquid hurts when it goes down. I did manage to keep a couple of spoonfuls of macaroni & cheeze down at lunch.

My new room is great......very bright, even though it was foggy most of the morning. The fog has now burned off & I can sit up in bed & look at trees, ocean & sky!

VIEW FROM MY OLD ROOM!

I had a treat today.......my friend Kathy B. dropped into my room for about an hour to play her mini guitar & sing me some songs......music is like a natural drug & I find it to be a wonderful healer!! She left me her little guitar & some music books....encouraging me to use some of my time to learn how to play. I will probably play around with it some.....though I may want to be careful that my finger tips don't turn black & blu......due to my low platelets.

Dr. Salih was in to see me this morning & Dr. Hasegawa was in this evening. They both seem pleased that my WBC jumped up to 0.4. This is a good indication that my Stem Cells are engraphing.....I am looking forward to tomorrows results. We are still waiting for the ANC values.

On the subject of my hair.....I still have it.....though it is coming out one piece at a time. (all over my pillow & sheets). During my chemo treatments last fall, I shaved my head on roughly day 17 after my 1st treatment........this was after my hair came out in clumps & clogged my parents shower on a couple occasions. One of the symptoms to indicate you are losing your hair, is that your roots feel itchy & hurt a bit when moved around. I will keep you posted on this issue.

Good night!

Day + 7 Add on

2006-07-25T16:32:00.000-03:00

My ANC came back with a whopping 8! This could be a good sign, however, tomorrow should give us a better indication.

Also, I am switching rooms this afternoon. It doesn't happen very often........there are 3 empty rooms in this unit, so the cleaning staff took advantage of this opportunity to wash & wax the floors....
Anyway, they wanted to wax my floor if I was feeling up to it.....so it meant I would be out of my room for most of tomorrow.....after much thought & discussion I decided I might as well just switch completely, rather than for the day.
This room has a view of Saint Mary's University...... Halifax Harbour is off in the distance & I can see the sky & the trees. All my previous stays have been on this side of the building & I really enjoy the morning sun.....and waking up to it each morning.......or at least when it is not raining!! It is a much bigger room too! In any case, it will be a nice change of scenery after 13 days in the other room looking at a brick wall!!

I managed a good walk today & I am feeling better than I have since checking into the hospital!!

TODAY HAS BEEN A VERY GOOD DAY!

Day + 7

2006-07-25T09:18:00.000-03:00

WCB 0.2, HGB 89, PLT 31

Quote of the Day:

"No one can depress you. No one can make you anxious. No one can hurt your feelings. No one can make you anything other than what YOU allow inside."
- Dr. Wayne W. Dyer

Last night was a bit rough as I didn't settle into a great sleep. Around 4pm., after my bloodwork and vitals where taken by my nurse Lisa, I had the dry heaves.....very painful when you have no subtance to throw up....but you still go through the motions.

Anyway, today is a new day.....I am feeling fairly good......I am all cleaned up.....ready for all the possibilities ahead.

It may be a good sign that my WBC remained at 0.2 for two days....we are waiting for my ANC calculations to see if they are up at all. If they are, it could mean that things are starting to move in a positive direction. Or it might not mean anything yet.
My ANC has been 0 since Day +2.......I can leave the hospital once my ANC reaches 500(or .5 %). Once again, ANC (stands for Absolute Neutrophil Count) is the measurement of the total number &/or % of mature Neutrophils or WBC that are working to prevent infection.

My Platelets went from 10 up to 31 after my transfusion. Apparently, this is a very good increase. Tomorrow, it will drop again, but hopefully not enough for another transfusion.

Dr. Bashar Salih was in for his examination today & everything appears to be going well. He said that I am doing "Above Average" for this stage of the transplant. That is what I like to hear...

So far there is not too much else to report on the day..... so I will write more once there is something more tangible to report.

All of the e-mails and comments I receive each day have lifted my spirits on so many occassions. Even when I was feeling at my worst.....the motivational & humorous notes from you could make me smile or cry..........they would make me forget how awful I was feeling at that moment. I thank-you from the bottom of my heart.....for those gifts.

Love Angie

Day + 6

2006-07-24T10:56:00.000-03:00

This is Coleen posting.
Angie's counts today are: WBC .2, HGB, 91, PLT 10.

When platelets are 10 or below she has to have a platelet transfusion. She had her transfusion earlier this morning and it only took about 15 minutes.
It is very busy being a patient. Bloodwork, Doctor's rounds, nursing checks (vitals), dressing changes, hair washing, room cleaning, etc. At 12 noon, Angie is finally resting. We have been up since 5:30am. She is exhausted and not feeling the best. She is feeling a little hungry today, but the dilemma is "What to eat?" We called mom to the rescue, and she is going to whip up some split pea soup and bring a can of tuna. (Angie's request, certainly wouldn't be mine) Mom is due to arrive at 1pm. Mom will staying for the night.

Quote of the day:
" Life isn't a matter of milestones, but of moments."
-Rose Fitzgerald Kennedy.

Day + 5

2006-07-23T13:15:00.000-03:00

Sorry, I didn't put a post in last night! I wanted to include my blood counts for yesterday & update the remainder of the day....so I will summarize it here before moving on to today.

Day +4 Part 2

My counts were: 0.1 WBC 96 HGB 46 PLT.

The afternoon went OK & Dad came by for a visit around 3:30pm. Shortly after Sue arrived for the night, Dad took Mom home for some much needed R&R. She has been simply amazing at taking care of me during my more sickly period.....she even slept with one hearing aid in so she would wake in the night when I needed her.......though I tried hard to be quiet so I wouldn't wake her every time. It has been a miserable few days at times but it really did help to have Mom's constant care!

After Mom left, I started to have some problems again. My heart burn feeling started acting up. According to the nurses, most patients usually have one exceptionally weak area that cause most of their problems. One of the effects of chemo is that it kills fast growing cells. The lining of the mouth, throat, digestive tract & all the way down to the anus is destroyed by the chemo. Some people get really bad mouth sores, sore throat & have trouble eating. In my case, the area just below the rib cage & just above the stomach is very irritated. It feels sore to touch & causes heart burn which then causes me to vomit & to also have diarrehea. I am having great difficulty eating or drinking, as it hurts & leads to me being sick everytime. Hopefully, things are on the rise, because I am now taking Panteloc 2 times a day by IV which is like Losec (pill form). This is supposed to help heart burn.

Anyway, last night I ended up vomiting around 8pm.......however, this session ended up being a bit more violent.....which lead to my nose blood. Because my platlets were 46, my blood had trouble clotting. In order to stop the bleeding, I had to pinch my nose, put ice on the bleeding nostril & ice on the back of my neck......it took about 1/2 hour for it to finally clot. The clot looked like a big tear drop hanging out of my nose....YUCK. Heather, my nurse pushed it back in my nostril a ways to I didn't tear it & cause it to bleed again. I had to sleep with the clot in my nose all night long & it is still there! I am not going to take a picture of it for the blog......but you can use your imagination.
I took some Maxeram & benedryl to help with some of my symptoms.....which put me to sleep until midnight & then I took some codeine & gravol which sent me to sleep until about 5am. I wasn't much company for Sue last night...but she said that she didn't mind & that she was glad to be here to help & support me.

TODAY DAY + 5

WCB 0.1 HGB 90 PLT 26

Quote of the day:

"DO WHAT YOU CAN, WITH WHAT YOU HAVE, WHERE YOU ARE."
- Theodore Roosevelt

I woke up today feeling much better than I have in days! My problems are at a minimum. I ate Jellow for breakfast & a baby tub of chocolate ice cream for lunch........& I kept it down! Sue even says I don't smell as intensely of creamed corn anymore....though it is still lingering.(I didn't mention it before, but the preservative used in the Stem Cells are what causes this smell.....so it has been here ever since the cells were put back into my blood)

Sue & I watched "The Sound of Music" this morning.....Sue had never watched it before!!! I was excited for her to see it......she loved it!!! It was a great way to spend Sunday morning.

Anyway, we are currently watching the British Open & Tiger Woods is leading with a score of -17 on the 15th hole. I am cheering for Tiger!

Day + 4 Morning Update

2006-07-22T11:52:00.000-03:00

Nurse Lisa shampooing my hair!

Hello All, this is Angie's sister Coleen posting for Angie and Mom today. Here is the day so far:
Angie slept pretty well last night. This morning she got up around 7:30, went to brush her teeth and puked. She then managed to walk up and down the hall twice, then had some jello and then puked. She then decided to try and look pretty for me, so Mom helped her with her bath, then she puked. Then the nurse washed her hair, she got back into bed, decided to rest, and then you guessed it, she puked. I then arrived, and she has been nice enough not to puke since I got here. Although she has warned me that it is coming soon. All in all, between pukes she is resting comfortably and watching a bit of the golf. For those of you who know mom, watching the British Open is the only option for the television today. (So she can peek at it between pukes)

Oh, her quote of the day is "Our greatest glory is not in never falling, but in rising every time we fall". (Confucius)
BUT we decided to change it today to "Our greatest glory is not in never puking, but in rising every time we puke". (Banks girls, 2006)

Day + 3

2006-07-21T14:53:00.000-03:00

This is Angie's Dad again updating on her behalf. Firstly her Quote Of The Day.
"First ask yourself; What is the worst that can happen? Then prepare to accept it. Then proceed to improve on the worst." Dale Carnegie.
Angie's bloodwork today is as follows: WBC-- 0.1; HGB--94; PLT--68; and ANC--0. They weigh her every day but she advises me that statistic is a secret. A womans prerogative, I guess.
Last night Angie's fever spiked above the normal 38.5C. She spent most of the night vomiting and had a bad case of the back door trots. For the younger generation that means the same thing as diarrhea. Angie's Mom(Joyce) is staying at the hospital pretty much throughout this critical stage. There is nothing like having your mother by your side when you are really sick. It doesn't hurt either that she is a retired nurse. They(staff) believe it will take about a week before Angie turns the corner and starts to feel better after the stem cells engraph.(Take a hold and start to grow). Today they did blood cultures from her Hickman line and also from a vein. This is so they can tell if the infection is in the line or not, as did happen several weeks ago during an earlier phase of her treatment. They gave her an antibiotic called Meropenum by IV.
She also had a chest X-ray today to see if any infection is showing up there. They also did a urine and sputum test; again checking for infection. So you can see that they are monitoring her very closely. Angie also has a burning sensation in her stomach. To treat this, they give her a medication called Pantaloc twice a day by IV. Staff assure us that all of the things that are occuring with Angie are normal for this phase. She just has to tough it out for a few more days.

Day + 2

2006-07-20T15:04:00.000-03:00

This is Angie's Dad writing this as she is feeling somewhat wiped out today and not feeling up to typing. I noticed Angie's quote of the day on the board when I came in to her room. "Just remember when you see someone at the top of a mountain... they didn't fall there". Paul H. Dunn
Angie's blood counts today are as follows: WBC 0.2 ; HGB 104 ; PLT 100 ; and her ANC is 0 (yesterday it was 28.8). I think Angie explained in an earlier posting that ANC stands for Absolute Neutrophil Count. When it is at zero, her immune system is basically non existant. She is at a critical stage of the journey now where her body cannot fight off infections on her own without medications.
I must say that Angie's mom and me are very impressed with all of the medical staff that have cared for Angie right from day one during late August of 2005. They are not only very professional but very caring at the same time.
We are both very proud of Angie for sharing this tough journey with everyone out there in the internet world who might benefit from her detailed descriptions of all the procedures she has gone through along the way. She is a real trooper and we love her very much. She will beat this
disease.
In closing today, I want to mention that Angie really appreciates the positive comments she has been receiving, not only in the comment box on the blog site but also by e-mail. For those of you who are still navigating around her blog site like I did initally, you can click on the word "Comments" at the bottom of each daily posting and write a message in the comment box that pops up. Put the bullet in the circle that says "Other" or " Anonymous" and click on "Send" or whatever that button says. Be sure to type your name at the end of your comments. Otherwise
it will be anonymous.

Day + 1 2nd Stem Cell Infusion

2006-07-19T16:05:00.000-03:00

This photo shows my 3 bags of Stem Cells in their frozen state.....-70 celcius. Steam is coming off them as they are removed from the container & then submersed in the tank of warm water to be thawed.
Jill is holding 3 metal trays that held the bags of Stem Cells prior to removal for the thawing
process.
This is Heather, Mom, Me, & Donna posing prior to the Day 2 Transplant.

Mom & I posing for Dad.

My transplant experience was pretty much the same as yesterday. I had that tightening in the chest & neck area….but I just kept sucking hard on the candies & took deep breaths to work through it. Once it was over, I was very relieved to have finished this chapter of the SCT.

Dr. Couban(my Stem Cell doctor) stopped in shortly after I was finished with my transplant & was pleased to see me eating lunch.....he checked out my mouth & noticed some white thickening already forming due to my low white blood counts. I am taking different medications to help with this problem & am rinsing 4 times/day with salt & water to minimise the mouth ulcers I will get. He informed me that I will develop a fever & infection, plus mouth sores over the next few days.

Everyday, my blood counts are recorded on a white board in my room. I started out with a very low WBC of 1.8 the day I was admitted, therefore, they knew that I would bottom out sooner then others starting with a higher count. (Normal is between 4.5-11)

My White Blood Counts today are 0.2 which means that I am extremely suseptible to infection. 0.1 is the lowest count that can be recorded.

This White Board is used to record WBC, HGB, Plt, & my weight (2 times per day).

WBC = 0.2
HGB = 105
PLT = 127

These are going to be the key numbers to watch from now on. They will bottom out & then we wait until the numbers rise again.

I also put a quote of the day on the white board each day. Today's quote is: Celebrate your life no matter where it takes you - no matter how difficult - and know that it is only a transition.

This is Kerry the Social Worker presenting me with my Bone Marrow/Stem Cell Tranplant Blanket. These are given to anyone who is a recipient of a transplant. There are approximately 100 transplants done a year at the QE ll Hospital.

I am holding up a Bone Marrow T-Shirt that says Bone Marrow Transplant - A gift of hope - A gift of life....with a picture of a sun & a rainbow.
I am holding on either side of the shirt 2 other birthday gifts.......one is a pewter sun catcher with a unique wild flower design.
Wild Flowers were chosen for this beautiful floral design for they are thought by many to be the hardiest of all flowers, each with it's own character.
Lily of the Valley is considered a symbol of purity and renewed happiness. This flower has been believed to help humans envision a better world.
Violets are considered by some to be a "return"; a plant given to a traveler to assure a safe return home. They grow so hardily under adverse conditions that they are sometimes called "little savage".
Morning glories are nicknamed by a rural English folk "life of man" because of each rebirth each morning.
Forget-me-not has become a symbol of friendship and fidelity. People who wear this flower supposedly are never forgotten by those who love them.

The other gift to the side of the T-Shirt was given to me by Angie (my study coordinator nurse) It is a stainglass flower with a pewter flower pot that says "Think of You". She also gave me a guardian angle coin with "Watching Over Angie" Written on it.

Another big day has passed.....looking forward to tomorrow & making the best of today.

Day 0 Part B

2006-07-18T18:25:00.000-03:00

Jill warms up my stem cells using a basin of water at about 38 degrees Celsius. She continually kept the bag of cells in motion for 3 minutes in the water. After, they were ready, she handed the bag to Dr. Salih & he hung them above my bed & infused them as quickly as possible. There is only a 10 minute window of opportunity from thawing cells to infusion......or else the cells would spoil.
Once the infusion began, I started sucking on a strong spearmint candy. I was warned about a garlicky or burnt cream corn smell & taste I would noticed during & after the transplant. This smell & taste comes from the preservative mixed in with the Stem Cells.The first thing I started to feel was a constriction/tightness around my neck.....this eventually moved its way to my chest. This happens, because the Stem Cells are infused so quickly into the body. I even felt the stem cells running down my legs like a burning or tingling feeling. My nurses continually assured me that my vitals were doing well to keep me from panicking. They also told me to take slow deep breaths to control these symptoms.I received 4 bags of stem cells today totaling 2,700,000 cells. As I mentioned each bag had to be thawed & infused within a 10 minute time period.....therefore, it took approx. 40 minutes to deliver all 4 bags. In between each bag, there was a period of relief before the symptoms would start up again.....though they weren't as bad as the first 2 bags. At one point the constriction in my chest hit me so hard that I thought I was going to vomit......but managed to avoid that! After it was all over, I felt tired & relaxed enough to have a deep sleep for about 2 1/2 hours. When I woke, I felt better than I had in days.....my nurse Cathy brought me in a birthday present that they give all Bone Marrow/Stem Cell Transplant patients. It is a pewter sun catcher for my window. I have been told that they also give each transplant patient a special bone marrow/rainbow blanket as a souvenir.

Day 0 "New Beginnings"

2006-07-18T13:32:00.000-03:00

The Stem Cell Collection was scheduled for 11am. My nurse today is Cathy W. & assisting her was nurse James W. Bush....(for real)! The floor doctor Bashar Salin was responsible to hang my bags of stem cells & to be present for the entire procedure.

Jill, the Tissue Bank Specialist brought up my cells in a metal cart on wheels.

Basically, here is how the day went for me. I was feeling nauseous still, so the nurse & I decided I would do 25 mg. of gravol. As usual, all my vitals were checked around 9am. At about 10:20am. I received Benedryl, Tylenol, Ativan & Zofran. My Stem Cells arrived to my room on the cart at 11am. At about 11:20am, Dr. Hasegawa (Stem Cell Doctor) came into my room to inform me that one of my bags of Stem Cells had cracked & they were concerned the cells would be contaminated. They decided it was best not to give me these cells back. This apparantly is the first time something like this has happened since 1992 when they started using these bags. Fortunately, I had provided 5,400,000 cells to start with...so I had plenty to get the job done. But a thought went through my mind as to what would happen to someone else if they didn't have an abundance of Stem Cells. Scary! So instead of receiving 5,400,000 of my cells back, I am now receiving 4,725,000.

Besides the medical staff, my parents & my sister were in the room during the infusion of Stem Cells. Dad took these photo's for me & Mom stuck close by to keep me calm. Coleen took notes as to how I was feeling during the procedure.....which I will try to explain in my next entry.Part B

Day -1

2006-07-17T20:50:00.000-03:00

Mom is here tonight with me & she says she was here for my first birthday & wants to be here for my second one too!
Today, I felt mostly"low grade" nausea but did some walking to help alleviate the feeling. It was a mellow type of day as I reflected on tomorrow. My nurses Cathy & Heather were in this morning to review the whole procedure for the Stem Cell Infusion. Prior to the SCT, I will be given Benedryl, Ativan & Zofran to help prevent an allergic reaction, anxiety, & nausea. The allergic reaction & nausea can be brought on by the preservative that was mixed in with my stem cells when they were collected a few weeks ago. The preservative is referred to as DMSO (I haven't looked up what this stands for). A doctor & nurse will be present for the entire procedure & my vitals will be closely monitored. A suction apparatus was brought in by my bedside tonight in case I have some mucous build up during the procedure.....
Someone from the Stem Cell Bank will wheel up my frozen cells on a metal cart with a sink that will be used to thaw the cells prior to putting them back in. Apparently, the cells are infused just like when you are given a blood or platelet transfusion by I.V.
I hope to have some photos to share with you tomorrow & will provide more details when I feel a bit better.
Angie

Day -2

2006-07-16T23:01:00.000-03:00

This is Coleen, for those of you who don't know I am her sister. I am writing for her today, as she is very tired and not feeling the best. She has been having low grade nausea most of the day. She went home for the whole day. She enjoyed hanging out on the deck, reading her book and enjoying a few short visits from friends. She stopped into work, (don't worry not to actually work, although I wouldn't put it past her), because her and Sue wanted to pick up a proper piece of foam for the "roomies" that will be staying with her in the bone marrow unit, to have a comfortable sleep. I guess the hospital mattress was pretty uncomfortable. I am the lucky one who gets to break in the "new and improved" mattress. Angie, in her kindness, wants to ensure that people are comfortable when we are here at the hospital with her. Today is likely her last day to go home for awhile, although tommorow is still a "rest day" before the infusion, she will likely stay at the hopsital and just get out for a few walks. She will give an update tommorow. Coleen

Update on Day -3

2006-07-15T21:49:00.000-03:00

Chemo was rather uneventful today.....I was very relieved that I didn't go through the same thing as Day -4. I bounced back well enough to go home for a few hours today. I was so thank-ful to have Mom stay with me during my difficult time....she is such a great mother & her nursing instincts were definitely in full gear. My sister Coleen & niece Nicole picked up Mom & I from the hospital & drove us both home. Thank-you to them for doing this for us. The sun was out full blast & I enjoyed looking at our new garden planted by Mary & Chummy MacDonald over a 2 day period. I am so thank-ful for their time & generousity, so that I would have the pleasure of a garden this summer.....something to look forward to when I am released from the hospital in a few weeks.
Our neighbours Peter & Maureen brought over a delicious meal of spagetti & meat sauce, some cranberry muffins & white wine for Sue.....it was the perfect meal for my palate today!
Our neighbors & good friends Sue & Andrea are baby sitting the dogs tonight so Sue could stay with me at the hospital.
It sure helps to have so much support through all this.....without it I don't know how we could make it through...
Here we are back at the hospital & will probably pop a movie in the DVD player as soon as I am done writing. Good-night!!

Day -4 & -3 Chemo Days

2006-07-15T10:09:00.000-03:00

Yesterday I received VP 16 Chemo over 5 hours. My nurse Shannon had to stay with me the entire time so she could monitor my vitals. My blood pressure was checked every 5 mins. I slept through most of it.....maybe because of the Benedryl & Ativan given to me prior to the treatment.....maybe because I was exhausted from the anticipation of this day.

My friends Cindy & Amy dropped by for a visit late afternoon & I didn't even have the energy to talk to them.....my mother took up that side of things for me. Anyway, my reaction to this Chemo was like none I have had before......apparantly not too many people react like I did to VP16. I vomited for 12 hours straight, as least once an hour & sometimes more. Sue dropped by at some point in the evening but I barely remember it.

This morning I got cleaned up, had some breakfast & went for a walk prior to my second day of chemo.

July 14,2006

2006-07-14T22:38:00.000-03:00

This is Sue updating Angie's blog for her. She had her intense chemo treatment today, and is pretty sick up to this point. She sleep through most of the chemo treatment, but woke up as it was just finishing up. Since then, she has been vomiting farely consistantly. Her Mom has been there the day, and is staying there tonight , to be by her side and assist her when she needs. She had a nurse attending to her throughout her whole treatment also.
I stopped by around 7 pm, and Angie was very tired, and not feeling well at all. She was too tired to talk much, and the nurse was trying to settle her with medication to help her with her nausea. I spoke with her around 9:30 tonight, and she asked me to update this blog, so , I did.
Saturday, she has another round of chemo. Not as intense, they tell me, but any chemo is so hard on the body. It is a shorter round also, so hopefully, she won't be so sick after. She hopes to be well enough on Monday to sneak out of the hospital for one last breath of fresh air, before she is too stay close to her room.
Please continue to send your words of encouragement as she checks her email and comments all the time.
Thanks to everyone who has contributed in so many ways! Keep up the good work!

Sue

MY MOUNT EVEREST

2006-07-13T23:26:00.000-03:00

A couple weeks ago, Sue A., Sue M. , Andrea & I planted a King Red Maple Tree in my front yard as a symbol of my upcoming Stem Cell Transplant. I called it "My Mount Everest"...... as I often refer to my SCT Journey by this name!!
I used a gift certificate that I received from my Aunt Janet & Uncle Ted on my 40th birthday to help buy this tree ...... I see this tree as a symbol of my 40th year when life changed forever.....I also see this tree as symbol of a new beginning...... as I celebrate a new birthday after my Stem Cell Transplant. I plan to watch this tree grow to over 30 feet wide & 40 feet high.....it will always be a reminder of this journey .....all the lessons & personal growth along the way!

Day - 5 Hospital Admission Day

2006-07-13T13:51:00.000-03:00

TODAY HAS FINALLY ARRIVED!!! I am anxious & excited all at the same time....

Mom & Dad brought me to the hospital for 10am. The 10th Floor of the Victoria building is where I went to be admitted as a patient.

GREAT NEWS.....They had a bed for me in the Bone Marrow/Stem Cell Transplant unit....there are only 6 beds in this unit & I was told that I probably wouldn't get a room here.
HERE ARE THE PERKS OF BEING HERE:
1. I have high speed Internet to update my blog & access e-mail.
2. Air Conditioning in my room.
3. Large Color TV with DVD player.
4. My own fridge.
5. A larger sized room & bathroom.
THIS WAS A REAL BOOST TO MY SPIRITS TODAY!!!

Mom & Dad were a great support today!! Mom helped me unpack all my stuff & Dad made sure my TV & DVD player were working properly.
After I was settled in my room, they had to go for an appointment to see Mom's oncologist in the Dixon Centre. There is nothing much to report, except her x-rays showed that her lungs were clear.

I met with Cathy, the Pharmacist to go over the Chemo Drugs & the potential side effects & complications that may occur.

I was also assessed by my nurse Patti & the unit doctor Bashar. Patti tooked a bunch of blood samples, weighed me, checked my vitals, & went over alot of information. Bashar reviewed my medical history & did a good physical examination.
At supper time I was given a pill called Allopurinol. This pill helps prevent a build up of uric acid in my body. Uric acid is basically dead cancer cells which can damage your kidneys if they are not dealt with.

All my assessments, tests etc. were done by about 5:30pm. Alot was accomplished today!!

As a treat, we all went out for Chinese Food at Fan's Restaurant in Dartmouth.....it will probably be my last meal that will taste good for a long time!!!

At 4am. tomorrow morning my nurse, Sandra, will be in to take my blood & hook me up to an IV of fluids. These fluids will be administered at a very fast rate to hydrate me in preparation for the start of my chemo at 10am. The fluids are important to help minimize damage to the major organs in the body.

Tomorrow I will receive VP-16 also known as ETOPOSIDE (eh-TOP-oh-side) over a 5 hour period. Saturday I will receive Melphalan(MEL-fa-lan) in approximately 20 mins.

I will do my best to keep my blog updated every day & if I can't then someone will.

Thank-you to all of you who called, e-mailed or sent comments in my blog over the past few days & weeks. Also, thanks to all those who are sending prayers & positive thoughts in your own way!! Please know how much I appreciate your support.....
I have a tough battle over the next few months & it gives me strength knowing that people care.

Pulmonary Function Tests

2006-06-28T22:34:00.000-03:00

Today, I visited the Dartmouth General Hospital for some Pulmonary Function Tests(PFTs). In other words, we were testing how well my lungs are working. We want to be sure my lungs are healthy prior to SCT plus we want to have some data to compare against future tests. Generally, there are three kinds of PFTs:
Ones that measure how well the lungs exhale
Ones that measure how much air the lungs can inhale
Ones that measure how effectively the lungs can transfer oxygen into the bloodstream
I only needed to have two of the above tests.

The first test I had was called a Forced Vital Capacity....it measured how much air I could exhale during a forced breath. After putting on my attractive nose clips, I started off breathing normally into the mouth piece. Then, I had to take a deep breath and blow out with a huge blast of air and keep exhaling as much as I could out of my lungs.....then I took another deep breath in. I did this 3 times to make sure we got an accurate reading. Forced expiratory volume is the most important measurement of lung function.

The 2nd test I had was called a Diffusion Capacity Test. Lung diffusion testing is used to determine how well oxygen passes from the air sacs of the lungs into the blood. The test measures the "diffusing capacity of the lung for carbon monoxide" How the test is performed:
You breath in (inhale) some gas containing a very small quantity of carbon monoxide, hold your breath for 10 seconds, then rapidly blow it out (exhale). The single exhaled gas is analyzed to determine how much carbon monoxide was absorbed during the breath.

The Respiratory Therapist told me that my results were in the normal range. This is good to know, considering all the chemo I have already received. Hopefully, my lungs will stay healthy after the SCT!

Wall Motion Study

2006-06-22T21:02:00.000-03:00

Today I went to the Nuclear Medicine Department of the New Halifax Infirmary for a Wall Motion Study....to see how well my heart is functioning.

This is the actual machine used to do my test today. I had to lie down on the imaging table, and the camera took an image at 3 different angles around my chest. I had 3 ecg pads attached to my chest to obtain heart rate data necessary to produce a movie of my beating heart, to see how well it is working as a pump.

Some of the chemo drugs I have received over 10 treatments may have caused a decrease in the efficiency of my heart. My doctor wants to make sure my heart is strong enough for the SCT. He also wants to have a baseline test to compare to after my Stem Cell Transplant.

A small needle was used to put a solution called PYP into my vein. This substance caused my red cells to become sticky. I had to wait 20 mins. and then I had a second injection of a small amount of radioactivity. Without the first injection of PYP, the injected radioactivity would not be able to stay attached to the red blood cells, and the images of blood movement in the heart would not be possible.

The 3 pictures took about 7 minutes each. I was in the room approximately30-40 minutes. A gamma camera is used to produce the pictures. The first picture was focus on my left ventrical. The other two pictures were focused on the walls & chambers of my heart.

Bloodwork & appointment with Dr. Couban

2006-06-21T12:03:00.000-03:00

Our good friends David & Sandy Hamilton were in Dartmouth last Thursday & Friday. We all had dinner at my parents on Thursday night & then went out for breakfast on Friday morning. Afterwards, David, Sandy & I travelled together to Mahone Bay to do the tourist thing...then went for a scenic drive through Lunenburg & onto Bridgewater where I was meeting up with my sister & her family. I realized that this is the first road trip I have been on since this whole cancer thing started last September!!! We certainly picked one of the most beautiful drives in Nova Scotia!
From there, we were continuing on to spend the week-end at John & Coleen's cottage on Lake Molega. Mom, Dad (Happy Father's Day) & Sue all joined us on Saturday. We enjoyed the weather & being together.....fishing, pulling the kids on tubes behind the Jet Boat, & just cruising the lake.....
I spent most of my time in the boat, as it was the best way to stay away from the bugs....plus I found it very relaxing!!!
Thank-you to Coleen & John for being great hosts!

Monday was back to reality.....
8am. - I had to put a "Hat" in the toilet so I could collect my urine over the next 24 hours. Prior to a Stem Cell Transplant, this is a required test used to see how well my Kidneys are functioning. They have to be working OK to proceed with the SCT. This test, along with a heart and lung test will also be used as a baseline to compare with future tests after SCT. I mostly had to stick close to home Monday...because they wanted all my PEE for this Kidney Test! I did manage to take Dad out for lunch to Boondocks Restaurant in Eastern Passage....went for a short walk & ice cream after lunch......THEN back home to PEE in the "Hat"!

Now, it is Tuesday morning & I have my last PEE at 8am....actually, I cheated & went at 7:35am.....as I couldn't hold it any longer!!
At 10am......with my jug of pee, I head to the hospital for the 2nd part of this test....more bloodwork. I am still waiting to hear back from my nurse with the results...
At 11am. I have an appointment to see Dr. Couban. First, I meet with Joanne, the nurse. We review some more details about the upcoming transplant......
I discover, that because I collected so many Stem Cells, that they have to administer them back to me over 2 days....apparently, there is a limit as to how many they can give me back at one time. After, I get my Stem Cells back, I will not be allowed to leave my hospital room again until my blood counts come up to an acceptable level......that can take weeks!
I also had to review & sign a"Consent to Undergo An Autologous Blood or Bone Marrow Stem Cell Transplant". This form reviews all the procedures, risks and discomforts involved with the SCT....that is always fun. Nowadays, in the medical field you have to sign consent forms for every surgery or major procedure.....it is the responsibility of the hospital/physicians to inform you of all the risks involved even the minor ones....
Anyway, it can be scary....
of course the biggest risk for me is that I may die from the SCT....if you like percentages...which I don't care for too much....there is 5-10% chance that I may die from the SCT within the first 90 days following transplant due to infection, bleeding, or damage to my heart, liver, lungs or kidneys. OR you can look at it that there is a 90-95% chance that I won't die......CUP 1/2 FULL OR 1/2 EMPTY THING!!
Other risks & discomfort include: infection, bleeding, mouth pain, throat pain, diarrhea, seizures, rash, kidney failure, liver failure, and heart or lung failure. In the long-term, I probably will be unable to have children. There is also risk of secondary cancer caused by the chemo.
I may require blood and platelet transfusions. There are small risks that I have have a reaction to these transfusions that can be, very rarely, fatal. There is also a very small risk on contracting an infection such as hepatitis or HIV.

In my meeting with Dr. Couban, we again reviewed the risks on the form....however, he reminded me that our primary concern is to try & get rid of my Lymphoma.....this is the biggest risk of all!
He emphasized that he still felt that going ahead with the transplant was my best chance at remission &/or cure. He said if I went anywhere in the world for treatment....that any lymphoma doctor would be recommending the same thing to me......

So we can now move forward in confidence that this is what I need to do to have a chance at cure. I am determined to continue doing my part to take care of myself....with the food I eat & the excellent supplements I take everyday. I hope to minimize all the side effects & risks associated with the transplant so that when I am cured....I can continue living a full & healthy life.

Thank-you for all your support through this challenge.....I really need it & it does help. You are all part of my team....& one person on a team can't win the game by themselves......

Day 2 Stem Cell Collection

2006-06-13T18:07:00.000-03:00

Today, Coleen & I made the trek to the hospital together for another collection of my stem cells.

I was hooked up from 8am. until 12:30pm and we managed to collect another 2.7 million stems cells.......now I have 5.4 million cells for my transplant day.....400,000 more than the maximum they were looking for.......SO lots available to recharge my batteries when I need them!

My stem cell nurse coordinator, Joanne met with us today to discuss the game plan from this point on. Over the next few weeks I will have some tests & doctor appointments. I will explain them as they happen.

Here is a brief summary of my countdown to my SCT:

DAY 5 - Thursday, July 13th I will be admitted to the hospital.
DAY 4 - Friday, July 14th I will be given a chemotherapy treatment called VP-16(Etoposide) over about 5 hours.
DAY 3 - Saturday, July 15th I receive a chemotherapy treatment called Melphalan over a 15-20 minute period.
DAY 2 - Sunday, July 16th NO CHEMO
DAY 1 - Monday, July 17th NO CHEMO
DAY 0 - Tuesday, July 18th **TRANSPLANT DAY** MY NEW BIRTHDAY

After my Stems Cells are transplanted into my blood we start counting up again. I will be in hospital 2-4 weeks after Transplant Day.

That is a general overview and of course I will provide more details as it happens.

Stem Cell Collection Day

2006-06-12T12:26:00.000-03:00

Mom & I were up early today so we could be at the hospital for 7:30am. After the nurse collected samples of my blood, we headed off to get some breakfast while we waited to find out the test results.

The lab was slow today so we didn't find out our results until after 11am. While we waited I had a visit from George the Social Worker. He took my medical history & asked a bunch of questions to assess whether I am prepared to go ahead with SCT. The Social Worker wants to see if I have a primary caregiver in place to help me during & after the procedure, and that I am ok financially, emotionally etc. Fortunately, I am doing fairly well in all areas....

I also had a visit from my nurse, Angie who is the research coordinator for the study I am involved with. She is outstanding at her job.....highly efficient& organized.....lots of positive energy....with a great personality.

Good News!! My counts for 34+ white cells passed the test. They needed to measure at least 5 million/kg of my weight & they measured 27 million. Therefore, it is a go ahead for my Stem Cell Collection.

My nurse Cathy hooked me up to the aphaeresis machine around 11:30am. My blood is drawn out of my hickman line into the machine where the whites, reds & platelets are all separated in layers.

The Stem Cells come from the white cells and are removed from my blood into a bag.

Only about 1/2 a cup of blood is in the machine at one time ....after my stem cells are removed then the rest of my blood enters back into my body via my hickman line.

Mom was with me all day being extremely attentive to all my needs....I certainly feel cared for at all times!!!

Coleen (my one & only sister) popped in for a few minutes on her way to work. She works on the same floor that I am having my procedure but a different section of the hospital...

She will be with me tomorrow when I go back for another day of collection. So you can see that I am not lacking for support of my family!

We finished with the collection at 3:30pm. and then I had to go see the hospital dentist for an x-ray & a check-up to make sure there were no concerns heading into transplant. He said I was good to go!! Yippee....I passed another test....

On our way home from the hospital my nurse, Cathy called on my cell phone to tell me that my collection went very well. In order for me to proceed with the SCT, they need to be able to collect 2.5-5 million stem cells. They collected 2.7 million stem cells in one day.....so technically we have enough already....however, she thinks that the doctor will probably want me to collect more tomorrow so that we have plenty to get me back on my feet again after transplant!

Tomorrow, I will be hooked up at 8am. for further collection of my cells until they hear from the doctor.

GCSF Injections

2006-06-09T18:21:00.000-03:00

I haven't written since last week, as there really hasn't been much to write about. This past week was a vacation from hospital visits & anything else to do with this tumour of mine. It has been good to have some down time to gather my strength for what is coming in the next few weeks.
Yesterday, was the start of my G-CSF ( granulocyte colony-stimulating factor)Injections also known as Neupogen Filgrastim. Filgrastim is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing therapy that will cause low white blood cell counts. This medication is used to prevent infection and neutropenic (low white blood cells) fevers caused by chemotherapy. I received this medication after each of my chemotherapy treatments to help keep my white count at safe levels. The doses I received after each of my chemos was 300 mcg per day from 5-7 days.
My current doses are more than 4 times as strong as those previous doses. The VON (Victorian Order of Nurses) administers 1380 mcg for 4 days finishing on Sunday. In large doses this drug encourages stem cells to mature very quickly into Neutrophils (a type of white blood cell). Because it causes such a rapid increase in neutrophils, the bone marrow is forced to push the stem cells out of the marrow and into the blood to make room for all the new cells. Hopefully, by Monday morning I will have lots of stem cells in my blood to begin the collection process. I will get a blood test at 7:30am. on Monday to determine if I have the necessary 34+Stem Cells. If I pass the test, then I will be hooked up to the aphaeresis machine for collection. I will have my laptop with me so I can update it while I am having my stem cells collected.

Visit from Jeannie

2006-06-02T18:16:00.000-03:00

Sue, Jeannie & I on the Back Deck
Jeannie & I in the morning room after breakfast.

It was a such pleasure to see our friend Jeannie visiting all the way from North Carolina!! (She is cheering for the Edmonton Oilers in their series against the Carolina Hurricanes.....so she is OK!) She & her husband Roger used to live in Nova Scotia and we used to do some hiking & kayaking with them. We met Jeannie when she decided to change her career from nursing to become an upholsterer!! She came into our foam & upholstery business one fateful day roughly 10 years ago asking a bunch of questions about our products & it eventually evolved into a friendship.

Anyway, we had a great visit & got caught up on each others lives. Hopefully, they decide to move back to Nova Scotia some day.....I know that Jeannie misses living here!

Landscaping Photos

2006-06-02T17:51:00.000-03:00

Here are a few photos that demonstrate some of the changes on our property. We now have a good base to start planting trees & various plants. It rained last night & today so that is very good for our new sods. We need to give our grass a good soaking everyday for the next few weeks.

1st Meeting with the Stem Cell Team

2006-05-31T07:16:00.000-03:00

It has been a few days since I updated my journal. I had a wonderful week-end after the positive news on Friday. Friday night my friend Josie brought over supper from the Vines Restaurant & then we had a fire with my next doors neighbors Andrea & Sue.... it was so relaxing & fun! A great way to celebrate!!

The week-end weather was fabulous here....finally....so I spent lots of time outside...walking the dogs at the beach, reading....& I even had the pressure washer out on Sunday cleaning off lawn furniture & a big boulder in the front yard. I was a little sore the next couple days....however it was worth it! It was good to feel productive again.

On Sunday my good friend Tina from Calgary came to visit for a couple days & we had very nice time. Lots of time to chat & get caught up on so many things. She is in Halifax until Sunday attending a National Conference for the Boys & Girls Club of Canada. We have known each other for 20 years (back in University days)....time sure flies. Anyway, she has been to Nova Scotia several times over the years and I always enjoy her company.

Yesterday, Tuesday was an exciting day....as the Landscapers showed up at the house at 6:45am. They worked all day yesterday until about 6pm. & will finish today. There were approximately 9 men working & two bobcats going all day long. For those of you who don't know....we moved into a new home last Thanksgiving Sunday!! I will put a photo of the finished results on a later posting. Maybe a before & after picture.

Also, yesterday was my first visit with my Stem Cell doctor and nurse. As I mentioned in an earlier entry, my doctor's name is Stephen Couban. My Stem Cell nurse coordinator is Joanne Edwards.
They will be in charge of my care from now until I finish with my transplant. Then, I will go back to Dr. Anderson (but also Dr. Couban will still be involved) & my regular nurse.

Mom & Coleen were with me and the meeting was a positive one. Dr. Couban was very pleased with my response to the first two high dose chemos'.....he used the word "excellent" which was very encouraging to me...because he is the kind of doctor who is straight forward & says it how it is. He also noted how healthy I looked after the treatments. I told him that I do feel healthy lately.
We talked about the next stage in my treatment. I don't have to go back to the hospital again until Monday, June 12th. Between now & then, Dr. Couban wants me to get stronger & also give my blood counts time to recover even more. On June 8th, the VON will come to my house to give me 2 high dose injections of G-CSF everyday until Sunday, June 11th. These injections will help my body make extra Stem Cells. The G-CSF is known to cause bone pain that can be treated with Tylenol. I have already received G-CSF injections in the past, after each of my 10 chemo treatments to help bring up my White Blood cells. I was fortunate not to have any bone pain then, however, these doses are around 4 times as strong as those previous doses....so it is more likely I might have some pain. But I am sure it will be nothing compared to the effects from chemo.....so I am sure I will handle it fine.
On Monday, June 12th, I have to be at the hospital by 7:30am. to provide a blood sample. The blood goes to a lab to be tested for something called CD34. This has to be present in my blood to proceed with collection that day. If everything is Ok, I will be hooked up to the Stem Cell Collection machine by about 9:30am....for 4-6 hours. This process of collecting my Stem Cells will take 1-5days.....depending on how many are in my blood.

After the collection process, I will meet with my doctor again to discuss the next stage. Most likely, my admission to hospital for the transplant will be roughly 3-4 weeks after the collection process, putting the start date to the 1st or 2nd week of July.

So that is all for now. Thank-you to all of you for your latest comment's and e-mails. It has also been great for me to hear from so many of you from my University of Calgary / Field Hockey days....those days bring back so many memories & were very special times.

All of your support is so comforting to me!!

Love Angie

Ct Scan Results

2006-05-26T17:15:00.001-03:00

Yesterday afternoon I went for a CT Scan. I have had quite a few CT Scans over the past 9 months. Each time there is a test....there is always some apprehension regarding the results. This scan had alot riding on it. My doctors were comparing my March 29th CT Scan to my scan yesterday, Thursday May 25th. This scan would tell us whether the two high dose chemo treatments of (R)-DHAP worked. In order for me to proceed forward with the Stem Cell Transplant (as part of the NCIC Study I am involved in), the size of my tumor had to at the very least stay the same size or be smaller then it was on March 29th.

Today after my blood work, I had an appointment to see Dr. David Anderson (my Hematologist) at 1:20pm. Coleen (my sister) went with me to the appointment. Mom & Dad were not able to be there, because Mom was getting her knee operated on today & they were at the other hospital site waiting for her 3pm. appointment.

I wasn't actually feeling overly nervous though I was sweating a bit....who wouldn't be. I felt that if the chemo's had not worked, I would be feeling more symptoms than I was. Anyway, I couldn't be sure...so I waited to hear it from the doctor. He was fairly close to being on time because I was his second patient of the day....so it was a relief not to have to wait too long.
He came into the examination room and immediately told me that my tumor had decreased in size by quite a bit.....he said this was "Good" news!! March 29th my measurements were 4.8 x 2.9 cm & on May 25th they are 3.1 x 1.7 cm. That is the smallest measurement yet!! So the 2 high dose chemo's did their job & now I move onto the next phase of my treatment. I am very thankful for this news today & there will definitely be a celebration tonight. It is important to recognize these small victories...

My chart will now be handed over to Dr. Stephen Couban(Hematologist specializing in SCT) for my Stem Cell Transplant. I meet with him on Tuesday, May 30th to discuss the plan. I will also have a new nurse who will be responsible for booking me into the hospital for the SCT, booking my tests & making sure everything gets done that the doctor requests.

As I write this, I am waiting to hear from Dad for an update on Mom. I know she went in for surgery but have not heard how it went. Hopefully, she will be back on her feet soon....I know she is looking forward to getting on that golf course this summer.

Thank-you for all your e-mails & comments......they give me strength & lift my spirits.

Love Angie

Photo of 2nd Hospital Stay

2006-05-23T22:09:00.000-03:00

This is a photo of Sue, Angie, Cousin Marie in front row.
Emily(daughter of Marie & my 2nd cousin), Uncle Gerry & Aunt Madeline(Dad's sister) in back row.
This photo was taken a few day's after I was admitted in hospital for a Staph Infection. Obviously, I was feeling much better & the antibiotics had started working.

Today's Blood Work

2006-05-23T21:42:00.000-03:00

My Liver enzymes LDH measurement has dropped to 263....getting closer to normal. (98-192) This is a positive thing, however I wish it would happen quicker than it is.
My White Count dropped to 1.8...as my GCSF injections have worn off.(normal is 4.5-11) There are two major types of White Cells. Lymphocytes produce antibodies, specific proteins that attack and help destroy specific germs. They are especially important in fighting viral infections, like colds and flu. The second major one is Neutrophils. They play a key role in the body's defense against invading bacteria by destroying invading organisms. My ANC (neutrophil count) is 918....I need to bet it above 1000 do my collection & to receive any treatment.
Platlets are normal. (very good)
My Hemoglobin has dropped to 84....below 80 I need a transfusion.
My bone marrow is being kind of slow getting my counts back to where they should be. However, I still have time on my hands until the collection process begins....so it should all still be Ok. I just have to be very careful not to get an infection or other illness while my whites are low. These low counts do make me nervous...I feel vulnerable at times like this as any little thing could make me sick & complicate this whole process. I constantly wash my hands & use hand cleaner to exercise some control over this situation. I also have to stay away from crowds whenever possible and definitely avoid any one who is sick.

I was at work for a couple hours this afternoon, prior to finding out my counts. It was very productive & it felt good to be doing something "Normal".

May Long Week-end Part 2

2006-05-23T09:47:00.000-03:00

Our long week-end was very enjoyable. Denyse Julien, a good friend of mine from my Calgary days, was in Halifax working on her Level 3 Coaching course for the sport of badminton. She is now living in Montreal working as a Badminton Pro coaching at a club. She is a woman to be admired as she has competed in 3 Olympics, Commonwealth games, many many world competitions for Canada in the sport of Badminton. Most of her life has been dedicated to this sport & she is one of the most disciplined and talented atheletes I know. She is also a great person, loyal friend with a wonderful sense of humor. We visited with her on Friday and Saturday evenings as her course ran all day Friday, Saturday & Sunday. It was wonderful to see her and get caught up with things. Sue, Denyse, Andrea (my very good friend & next door neighbor) & I had a feed of Lobsters on Saturday night.....YUMMY!! Canada lost against Sweden in the Semi's....:(.

My Aunt Judy & Uncle Jim dropped by for a visit on Saturday afternoon. It was nice to see them.

Sue & I also took the dogs, Jasper & Jessie, for a wonderful walk in Point Pleasant Park on Saturday & a walk at Rainbow Haven beach on Sunday. I am trying to walk more to increase my strength & stamina. Sunday night we went up to my parents for a visit & supper....we sat out on their back deck as the wind had died down & the sun was soothing.

On Monday, I had a terrific healing therapuetic touch session in my own home by Jane Moody. She is a great lady & was generous enough to drive in from out of town to see me at home. I felt excellent after my session with her.

After Jane left, we had company pull in our driveway from Alberta. We met Brenda & Gerry in Jamaica in Dec. of 2003 while vacationing. They were vacationing in N.S. for the past week & wanted to see us. We showed them around some of our local beaches, Fisherman's Cove( a fishing village that is also a good place for tourists to visit), and other points of interest in the area. Then we went for supper at Jamieson's Restaurant nearby. We enjoyed our visit with them. They are now off to P.E.I. for a conference.

Looking forward to a good week.

Comments

2006-05-22T11:05:00.000-03:00

Hi Everyone,

Please note that any comments you post will not immediately show up on my Blog. All comments will be read by me first & then I publish them on the site. I was advised to do this in case a stranger finds my site and posts something inappropriate. After all this is a family G rated web site :)!!

Angie

Doing What I Love!

2006-05-21T21:32:00.000-03:00

These photo's were taken in the Yukon during the summer of 2004. This first photo is one of me on top of Montana Mountain at a Cairn that was created with my Maritimer friends. The rock I added to the top looks like a Bald Eagle.
The second photo was taken somewhere along the Yukon River between Whitehorse and Carmacks. Five of my friends and I canoed that section in 2004 and have plans to go back and complete the next section to Dawson City in the next year or two. On the same trip, I want to hike the Chilkoot Trail. These are the things I will do after my Stem Cell Transplant.

May Long Week-end

2006-05-21T15:11:00.000-03:00

Hi,
I am going to give updates once and a while leading up to my SCT as a way to keep you informed & also as a way for me to record my thoughts and feelings.

I went for blood work on Friday, May 19th & my white blood cells were 8.0 which is within the normal range. (Normal range is 4.5 - 11.0) I get GCSF Injections after each of my Chemo treatment that stimulate my bone marrow to produce white bloods cells. This is the reason I am in the normal range for now.
My Hemoglobin was 87 which continues to be low.(Normal is 120-160) A blood transfusion is required when your hemoglobin drops to 80 or below. Mine has dropped as low as 82 last week-end. In some people a transfusion is given at 90 or below. My platelets were all the way up to 65.(Normal is 150-350) Mine have been as low as 9. (below 10 you need a platelet transfusion) Below 70 you have to be very careful not to bang your head or cut yourself, as your blood will not clot very well & you may not stop bleeding. The main issues in my blood at the moment is my liver enzymes & my calcium. Normal for LD in the liver is 108 - 211. Last Monday my number was 500 and Tuesday it was 676. On Friday it had dropped to 400. So it is still high....it may have to do with those GCSF Injections that I mentioned above. Everything goes through the liver & kidneys & they can take a beating. I need to keep drinking lots of water....which I could be doing better with. Hopefully, on Tuesday my blood work will be normal. My calcium level is a bit low but that is probably due to the fact that I haven't been doing much weight bearing exercise...in other words I have been in bed alot in the past 4 weeks. So the past 3 days I have been going for some walks with the dogs.

The sun has come this afternoon, so I will write more later.

Monday, May 15, 2006 Update #1

2006-05-19T10:51:00.000-03:00

Hi,

First, I want to thank those of you who have sent e-mails of support & encouragement recently & over the past 9 months. It really helps to boost my spirit when I am having trouble doing it myself.

Second, I thought I would give a general overview of where things are at in my treatment.

As most of you know, my sister(Coleen) & I flew to Toronto & Vancouver in March to meet with two different doctors for a second opinion as to the next step in my treatment. At that point, my hematologist felt my Non Hodgkins Lymphoma was in a complete remission. The decision I had to make was whether or not to go ahead with Radiation Therapy. My two doctor's in Halifax had two different opinions....so they put the decision in my hands. As it turned out, my trip to T.O. & Vancouver was a worthwhile one for us to make. After meeting with both doctors, I had a test called a PET/CT Scan done on my body in Vancouver. We do not have this machine in Halifax yet, but it is coming. Anyway, this PET/CT Scan showed that my cancer was still active & it also showed that my tumour had grown since a CT Scan completed on February 28th. This information changed everything. I would not be proceeding with Radiation as my lymphoma had relapsed. As a result, my best course of treatment would be Stem Cell Transplant(SCT).

Leading up to my SCT I have had two high dose chemo's that have required a hospital stay each time it is administered. In between these two high dose chemo's I developed an infection that lead to a 2 week hospital stay. These two treatments and extended hospital stay have been challenging, however, I think I have turned a corner & have been feeling well during the past several days.

Over the next few weeks, I will be building my strength again with a healthy diet & a supplemental program. On May 25th, I will have a CT Scan to determine whether I move forward with the SCT. If everything is a go ahead, my stem cells will be collected the week of June 5th. Then I wait 2-3 weeks until I will be admitted to the hospital for a 3rd high dose chemo. This one is much stronger than the first two....& will destroy all the good & bad blood cells in my body. Once all my cells are destroyed...they will reintroduce my own Stem Cells back into my body so they can find their way back to where they belong. Eventually, my blood counts will start to rise & the slow recovery process begins. I will be in hospital roughly 3 weeks. I expect to begin my 3rd treatment (SCT) either the last week of June or first week of July.

I still feel positive that I will be successful in meeting this challenge in the coming weeks. My family have been amazing through all of this. It means everything to have the love and support that they give to me everyday. I am also fortunate to have a good core of friends that have been in constant contact with me to lift me up or have a good laugh with. I can't express enough how much all of your thoughts & prayers help give me strength to face each day.

When I go for my SCT, I hope to have a laptop computer to keep up with my e-mails.

This is just a brief description of the events of the past 2 couple months, however, it gives a general overview of what has happened & what is expected to happen in the coming weeks.

Again, I thank all of you for your support.

Love Angie