VANCOUVER ISLAND WINDTALK

You BWD'ers have been so supportive of me since I was diagnosed a year and a half ago with Hodgkin's Lymphoma. I've been pretty quiet about what's going on lately, but I'd like to share an update with those of you who are interested..

I’ve been putting this off for a while, again.
I find it difficult to share this story with you. It was a lot easier when it was about my adventures in the mountains, or ocean. But this shit is no fun, excuse me.

I would first like to thank those of you who have been thinking about me, praying for me, feeding me, massaging me, loving me, supporting me, etc. I truly love you so much.

The rest of this letter is pretty detailed about what’s going on, so if that’s not your thing, here’s your bus stop.



Some time ago we were told that if my Hodgkin’s Lymphoma were to recur, I would likely be a candidate for a Stem Cell Transplant, which is my last chance for a full cure of the disease.

Step one started a little over two months ago, and consisted of two cycles of pre-transplant chemotherapy. I was on a protocol called GDP, and it really sucked. But it’s over now. Next was a barrage of tests, including pulmonary function, MUGA (which measures the efficiency of the heart), many blood tests, ECG, chest x-rays, creatinine clearance test (which included collecting my urine for 24 hours, and amounted to about 4 litters!), etc.

The next step in getting ready for the transplant was taking a drug by subcutaneous injection called Neupogen. This drug has two main actions, it stimulates bone marrow to produce more stem cells, and softens the bones to allow the cells to enter the blood stream more easily. My bone marrow swelled inside the bones, and I was very sore for 5 days. The pain was like nothing I’ve ever experienced, but the good news is that extra strength Tylenol did a pretty good job at alleviating it.

Last Wednesday we came to Vancouver to get the next phase of the process started. On Thursday morning I was at the hospital just before 7am for a surgical procedure to have a Trifusion Hickman line inserted into my chest. It’s a venous catheter, which can handle all of the upcoming blood samples, and IV drug therapies. I was given a couple of doses of Fentanyl, which is one hell of a drug. I read about it afterwards, and was not surprised to see that it’s 100 times stronger than morphine! I was amazed at its effects almost immediately as it was administered into my IV line.

From the surgery room I was wheeled up immediately to the Aphaeresis unit, where I was hooked up to a Cell Separator through my new Trifusion line. This machine separated my own stem cells from my blood, which will be given back to me after chemotherapy to repopulate my bone marrow. We had been told that I would need at least two full days, maybe three, attached to this machine to get enough cells, but you know me well enough to know I got it done in one day! My nurse took me off the machine in the mid-afternoon, and told us that we’d be receiving a call at some point when a bed was available for me in the transplant unit.

I just got the call that I’ll be admitted tomorrow morning at 10am. I’ll be in “T-15” which is the Bone Marrow Transplant Unit. The good news is that T-15 recently won the highest marks for hand washing compliance out of all the Vancouver General Hospital departments.

We’ve been told to expect me to be an in-patient in T-15 for about a month. Wednesday will be day one of six consecutive days of high dose BEAM chemotherapy. I'm told BEAM is something like 10-15 times more potent than any of the chemo drugs I've experienced to date. I will be given my own stem cells back on day seven. I will continue to feel quite ill for another 10-14 days, and then at some point I’ll start to feel better. Blood tests will be done every morning, and at some point the doctors will deem that it’s safe for me to leave the in-patient unit based on my blood test results. I will have to stay here in Vancouver for another 2-3 weeks as an outpatient, and again at some point the decision will be made that it’s safe for me to head home.

So again, I thank you for your continued love and support of Michelle and me. We’re doing quite well, but are scared, as I’m sure you can imagine. Visits in Vancouver are welcome, and there’s a spare bedroom available at the suite we’ve rented near the hospital.

Some of you have asked for our temporary address here:
#2-2859 Manitoba St.
Vancouver, BC V5Y 3B3

I’m looking forward to putting this behind me, and seeing you again soon. Please feel free to contact me for whatever reason, including any questions you have about what I’m going through. I’m grateful for your continued love and support.

Sincerely,


Steven

My best friend, also called Steven, an ex windsurfer turned kiter went through a similar experience in the last 18 months. He had an aggressive type of lymphoma with a poor prognosis and endured endless treatments. There were many dark days as he called them but he came out the other side doing well. During his treatments we talked a lot about getting back on the water one day. We celebrated his success with a trip to ventana in January. Amazing. His strength is returning. Check out his blog for a little inspiration. Ask about him as the staff will remember him. He is a physician. The blog is "doctorsteve'sblog" I believe.
Jazzydoc

Thanks jazzydoc, I'll check out dr. Steve's blog.

Obsessioned wrote:The rest of this letter is pretty detailed about what’s going on, so if that’s not your thing, here’s your bus stop.
I just got the call that I’ll be admitted tomorrow morning at 10am. I’ll be in “T-15” which is the Bone Marrow Transplant Unit. The good news is that T-15 recently won the highest marks for hand washing compliance out of all the Vancouver General Hospital departments.
Sincerely,
Steven

Just saw this....not in this section often and so I am sure the general silence is not a reflection of how many people of this community have seen your post, feel for you or have anything cheerful to say.

I personally find it difficult to read some of these details and am amazed at your sensitivity to those of us that do .....so your bus stop note was mostly heeded, however I did see enough to recognize you have not lost your sense of humor. Obviously healing thoughts heading your way!! Keep scrapping, there is no downside Sounds like you are in good, helpful hands Steven, I wish you great luck and focus.

Steve - take strength in knowing that you have world-class doctors and nurses doing their utmost for you. Confidence in your medical team helps with a positive outlook.

Some doctors and fields of medecine sit back and follow the norm, but the BMT group at VGH are exceptions. They have spent decades participating in studies of and developing new and better treatments, and their improvements in treatment success rates are the result of this attitude of continuous improvement and hard work. My wife worked as a nurse on the in-patient ward and then the out-patient ward for about 15 years before we moved to the island. I know how hard that team works.

Keep smiling as much as you can, they call the folks in the hospital "patients" because it is all about having patience and being patient.

Your entry is very moving, Thank you for relaying your experience. Your words indicate remarkable courage. I wish you the very best of luck.