Line and Logistics - Ready, Set, Go

Well, it's almost go-time.

Monday's line insertion was a mini roller coaster in itself, but the good news is it's in. The radiology department was a bit behind so Mom and I were waiting outside the procedure rooms for a while. I had my IV inserted for sedation and a radiology doctor came out to "take a peek" at the area in preparation. His reaction to my neck and chest was not positive. He was immediately certain they could not put a full line in, that if they did the tube would likely erode through the skin due to the lack of tissue (this had been my fear looking at myself everyday) and maybe get a temporary one in. Of course, I was shocked and reminded him of the 2-page report done in December that indicated a full line was possible, as well as the fact this was for a trial that had taken over 7 months to get approved, etc. etc. I gather he caught my anxiety and said he'd get his colleague to consult.

Minutes later a nice, friendly guy appeared and introduced himself as Dr. Wong. He looked and said he agreed a regular line, inserted into the jugular vein would not work, as there was no tissue to "tunnel" the opening to. You can visit wikipedia.com and search Central Venous Catheter if you're really confused! He thought maybe they could try the subclavian vein though, one of the other major veins a little further down. I was ecstatic to hear that hopeful idea. He indicated the downsides were that vein is close to the lung so there was a risk of puncturing it, and secondly they'd have to tunnel near the armpit which could be uncomfortable later. Neither downside was a big deal for me.

Dr. Wong (luckily) ended up performing the procedure, and despite the sedation they put in me, I was awake for it. I watched the screen with my chest pictured on it and the little tube moving around in concert with the pressure I could feel. At one point Dr. Wong asked me to take a deep breath to help the line straighten out, which I did. Shortly after, Dr. Wong said "Okay, looks pretty good. I don't like to toot my own horn, but..." when I interrupted him with "Toot away, I am so happy to have this thing in! Thanks!"

So after a couple hours of observation in Unit 47, mom and I headed home. I had quite a bit of pain for the next few days, but that has eased now and just some mild discomfort remains when I use my right arm too much. I've had the dressing changed twice since the insertion and the incisions look pretty good. My skin has developed a massive rash likely from the sterile skin prep they use to do the insertion, but hopefully that calms down in the coming days.

With that over with, I am preparing to go in to the hospital Monday. Dr. Chaudry started me on a drug this week that will help prepare my liver for battle, and yesterday I had an infusion of immunoglobins, or a blood product with antibodies in it, to "top me up" and get me through the next few days without infection. He's really pulling out every trick!

From the various emails and calls I've received in that past couple of weeks, I thought it would be helpful to give you some information on the schedule for the next while after admission. I've posted a summary version on the sidebar for future reference as well.

June 2nd Admission to Unit 57 - I will do a final inhalation of one antibiotic I currently get monthly, and then go up to Unit 57 to do the admission paperwork. Likely I'll not have a bed assigned to me yet, and after the necessary vitals, tests are complete, they'll let me go home overnight.

June 3rd Day -9 Clofarabine - I will get back to the hospital very early for bloodwork, tests and then at 9 AM receive an infusion in my central line (CVC) of the experimental chemo drug. It's purpose primarily is to help get rid of the existing bone marrow I have to make way for the new marrow. It also serves as an immunesuppressant, which will help control the new marrow until it has settled in. As it's the drug the doctors know the least about, it is difficult to know how it will affect me. There's a list of "usual" chemo side effects (hair loss, nausea, vomiting, fatigue, mouth infection, headache, etc. etc. etc.) that the team will try to counter. It's hard of the liver though. I will likely stay in the hospital this night until discharge.

June 4th Day -8 Clofarabine - Repeat Day -9

June 5th Day -7 Clofarabine - Repeat Day - 9

June 6th Day -6 Clofarabine - Repeat Day - 9

June 7th Day -5 Clofarabine My fearless brother-  GCSF - I repeat Day - 9.  My brother starts his injections of GCSF. It is a growth factor that overstimulates the bone marrow, causing it to produce levels of stem cells above normal. He will feel a little like he has a bad cold, with aching bones.

June 8th Day -4 Thiotepa My fearless brother - GCSF - I receive Thiotepa, another conditioning chemotherapy drug that I have not received before. The doctors are familiar with it but usually don't use it in this scenario. This drug will excrete itself through the skin, so I will need to shower, change linens and clothing every 6 hours to avoid burning the skin. It has a host of "usual" side effects as well. It will help get rid of the existing bone marrow. My brother repeats Day -5.

June 9th Day -3 Melphalan My fearless brother - GCSF - I receive Melphalan infusions, which I have not received before and are often used with lymphoma patients. Again, usual side effects and attempting to get rid of the existing marrow. My brother repeats Day - 5.

June 10th Day -2 Melphalan My fearless brother - GCSF - Repeat Day - 3.

June 11th Day -1 Immunosuppressive drugs start, my brother’s collection. I finish the chemo conditioning and start immunosuppressive drugs similar to those any transplant patient receives (i.e. kidney, heart) - this serves to keep the new incoming immune system (new bone marrow) weak until it's okay with its new surroundings. For my brother, after four days of the shots (one shot each day, similar to an immunization), there will be lots of stem cells in his bone marrow and the excess will get pushed into his blood stream as there will be no more room! Normally, your stem cells remain in the bone marrow until they mature into either hemoglobin, platelets or white blood cells. With a bunch of extra stem cells in his blood stream, they will insert a catheter into his jugular vein and start running his blood through an apherisis machine. This separates the stem cells from the other blood cells (by a microscopic weight difference!) and puts them off to the side in a separate bag. The other blood cells are circulated back into his veins. After a few hours they'll have collected enough for me, and they'll close off the catheter and he'll go home.

June 12th Day 0 Receive my fearless brother’s cells - The team will infuse the stem cells collected the day before into my CVC, similar to a blood transfusion. It's not surgery and pretty uneventful! My brother will be checked out to ensure the catheter site is healthy and he is feeling okay.

That's up to Day 0. After that, we wait. The stem cells will magically move from my bloodstream into my bones and eventually "graft" and start producing the 3 types of blood cells. This usually takes around 3 weeks. During that time, I'm basically without any immune system, so infections are likely and I will need hemoglobin and platelet transfusions. My mouth and esophagus will become infected and I'll be pretty sick. Really the "pre" and "post" Day 0 days are the most risky, not the actual transplant day. I've done two transplants before and survived hell last relapse, so I'm pretty prepared for anything!

SOME IMPORTANT LOGISTICS

These may sound kind of crazy and mean, but I have to make sure this transplant goes as well as humanly possible.

I will be at serious risk of infection during my hospital stay, so I will NOT be accepting any visitors (except my immediate family and Tasha, unless any of them have colds).

I WILL have my laptop and have Internet access, so please feel free to visit me in the "virtual world" by email or on my blog or even Facebook. Either myself or Tasha will update my blog as often as possible so watch for that.

Deliveries of flowers or fruit are NOT permitted on Unit 57 as all the patients are immunosuppressed. I WILL accept prayers, wishes, positive energy, thoughts! If you want to send cards, it will be easier to send them to mom and dad (38 Douglasview Circle SE, Calgary, AB, T2Z 2P4) rather than the unit, as I may switch rooms or (hopefully) get passes!

Whew. That's a lot of information I realize. Don't feel like you have to learn it! I just wanted to pass it on as many of you have been asking. Thanks for all of your support and I look forward to reporting from Unit 57! I am ready to go!

Tricia

Healthy, Strong, Ready and (a little) Scared

Pre-transplant testing is basically complete. Since last post, I've had more bloodwork, an echocardigram, bone density test, ECG, and pulminary functions test. I even travelled to Canmore for a last-minute CT of my chest - beautiful mountains and a bunny in our front bushes when I returned!

I also had a physical this past Thursday with Dr. Chaudry, one of the bone marrow team who will see me daily on Unit 57 at the Foothills a week from Monday. Dr. Chaudry had to review my entire history (which is as colourful as it gets) and check me out. He has known me since my disease surfaced in 1997, visited me in ICU back in 2006, and really didn't seem that excited about having to send me back to 57 again especially when I look so healthy right now. When I pointed out his lack of excitement, he just sighed heavily and said he wished they didn't have to make me sick again. It's a bit of a reminder of the reality of what I am heading into. While Dr. Brown has been working non-stop to get this trial approved, communicating with me every week (I have his cell, home, work and email!) with updates and knowing my desire to do this treatment, Dr. Chaudry hasn't seen me as often since the 2006 disaster. These doctors have become friends and I see the weight of my journey on them more than ever now. I have told them I'm in it to win, and I hope to share that win with them, along with everyone else.

Seeing Dr. Aung a couple more times last week in Edmonton was fabulous. Those visits, along with daily Qi Gong and more acupuncture by my physiotherapist (consulting with Dr. Aung) have allowed me to feel strong mentally and physically, and feel 90% of my toes. I can balance on one foot and do Yoga poses now when I couldn't even lift one foot off the ground 6 weeks ago! I can also run up the stairs now...bizarre!

A week ago last Friday Mary Ellen and Bob had us over for dinner with Marty and Karen (all uncles and aunts) that was wonderful. To spend an evening eating delicious food with wonderful people who love me so much was energizing for me. I am so fortunate.

Last Wednesday I celebrated 34 years of life, with another delicious dinner at a restaurant in Calgary "BLVD" with Mom, Dad, my brother, Dana, Tasha and Ryan. It was a great night, and a chance to enjoy time together with my key "hospital team" before these next few weeks explode.


The weather did not cooperate for these last two days of normal freedom! I had planned to go to the Children's Festival today with Tasha and Talyn and then golf with Dad, but the cold rain changed that. Instead I did some inside boxing, bowling with mom and Tasha and brain academy with Dad. The Wii has no weather restrictions...

I feel very strong and ready to take on this next couple of months. Absolutely. Of course, that does not mean I am not concerned about the challenges that lie ahead. Tomorrow I go into the hospital to have a central venous catheter (CVC) inserted. It is a silicone tube that is inserted into a large chest vein that runs to the heart. The line is extremely important for the transplant process as it is the primary tool for blood collection, chemotherapy infusion, blood transfusion, antibiotics, hydration etc. I have had them inserted 3 times before, once for each transplant and once after my last relapse. Unfortunately, the stitches from the last insertion in 2006 were the primary source of the flesh-eating disease that I experienced, which sent me into emergency surgery, Intensive Care and months of complications. My neck and chest now have virtually no tissue between the bones and the skin...which will make the insertion tomorrow a little interesting to say the least. I am probably more concerned about tomorrow and the coming week when the incisions heal than I am about the experimental chemo and transplant! Dr. Chaudry talked directly to the radiology doctor last Thursday to explain my situation, and Dr. Brown had ordered an ultrasound last December so they could "explore" the possibilities for the line...so I am sure it will be okay, but I'll be really happy when it's inserted and then when the stitches are healed and removed 10 days from now. Mmmmm. Breathe in. Breathe out.

Row Row Row your boat

First things first. Let me report that my bone marrow biopsy results show that I am still in remission (whew!), which is the final step in qualifying for the clinical trial!

The biopsy went very smoothly back on May 1st - I've had over 10 of these procedures, and for the first few I did not take sedation (I wanted to drive home). Inner bone pain is absolutely the most severe pain I've ever felt, and one of my doctors pointed out a few biopsies ago that "you don't get extra points for pain", so I've opted for sedation ever since. Much smarter.

Later that day, my mom's cousin Ellen, who I lived with for a period of time when I finished university in Regina, came to Calgary for a visit. It was an awesome couple of days eating at scrumptious restaurants, drinking good wine and visiting, laughing and catching up with a dear friend. An excellent source of energy!

That Sunday I attended a fun, creative and wonderful celebration of Talyn's 3rd birthday (Tasha and Ryan's son)! It's hard to imagine the tiny newborn that I held in his first hour is already 3! His Cars-themed party was pretty grown-up.

The next few days were filled with a flurry of activity when Tasha, Ryan and Talyn moved from their Copperfield home to the Richmond area of Calgary...I was around to assist in assembly, organizing, or simply playing with Talyn, and the move went successfully. While I'll miss being minutes away from them, I'm so happy that they are in a beautiful house in a great neighbourhood with almost no commute to work.

On the weekend, after having Jack, Davis, and their parents over on Mother's Day, mom and I met up with my 3 Survivor Powerchicks - Shannon, Julie and Laura and watched the finale of Survivor. Myself with these 3 ladies from PwC are true Survivor addicts, and have had an intense and complicated pool going on the reality show for several seasons. We even have a plaque to recognize each season's winner (I must admit my name is on there the most often!). The finale is a big party with food and fun, and hilarious commentary by all - I am grateful to have them as friends. It may sound crazy, but it's an example of taking something simple in life and making it as fun and interesting as possible!

In between all the action, I continued several pre-transplant tests including seeing an eye specialist, having a hospital dental consult, X rays and bloodwork. This week, I met with the clinic's dietitian and the pharmacist who walked through all the drugs and medications I'll be taking, as well as the numerous side effects that are likely and possible. With a bone marrow transplant, the new immune system can reject almost anything in the body, as it's all new. It's the opposite of an organ transplant where the immune system can reject the "foreign" organ - instead the new immune system rejects the entire body as it's all foreign! So the pre-admission testing is critical to establish a baseline of what is normal for everything. I have many more appointments this week and next week to continue that assessment.

While on my way to the hospital this past Monday, Dr. Aung's clinic called to let me know they had fit me in to see him Tuesday morning. Since they are booking into August, it was the wonderful work of a couple of people that originally told me about him that managed to get me in so quickly. I am so fortunate. I drove up to Edmonton yesterday morning, spent a couple of hours at his clinic, and drove back later that afternoon. I'm heading up there again tomorrow for 2 more sessions with him Thursday and Friday. As he says, in his positive way, he wants me to get strong enough to "row the boat" but first he needs "to help me get the boat going"! It's perfect timing with only a couple weeks until admission....between Qi Gong and Dr. Aung, I should be able to help row the boat that Dr. Brown and his amazing team have created for me. By the way, the feeling in my feet is probably 75% back!

So, the race to maximize strength of my mind, body and spirit before admission is going very well. I feel healthier than ever. This was confirmed to me on Monday, when I sat down in the waiting room at the bone marrow clinic, next to two women. I could tell the one woman was the patient, with her head scarf on, a thinner frame and comfortable clothes. Next to her was her sister, and they were leaned over a piece of paper that I recognized as a bone marrow workup calendar. I pulled out my calendar to make some notes and mark some changes, and the sister said "you have a calendar too, hey? Are you donating bone marrow?" I smiled and said "no, I'm receiving it - for the third time". They were pretty surprised. I guess my stylin' hair, good colour, strong body dressed in a spring casual outfit with matching leather sandals (with a small heel now that I can feel my feet again) made me look like someone who would be donating rather than needing marrow! Fantastic! For the next few minutes, I talked to them about my previous transplants, that they were in an excellent place to have the treatment, how fortunate she was to have a 100% sibling match, and that I was kind of an exception to need more than one transplant. It turns out her Day 0 is also June 12th, so I'll see her in Unit 57 and I told her I'd share any of my "transplant tips" with her.

So maybe I'll be able to row my boat and guide a few other boats too... :)