1st Meeting with the Stem Cell Team

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

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

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

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

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

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!

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

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

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