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