DAY + 100

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"

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

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"

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!

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

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......