Workup Week Update

Yesterday concluded my testing for workup week.  I spent nearly 25 hours at clinics over four days being poked, scanned, and measured.  I'm glad to report, to my knowledge, almost all the tests came back well.  The only abnormal result I'm aware of was my ECG - an electronic measurement of the heart.  I saw a cardiologist about it yesterday and he was confidant my heart was fine, there just may be a minor underlying issue that requires further investigation.  Nothing that will hold up my transplant, just something that it would be good to know.  I will have a couple tests performed once I'm stabilized post-transplant.

I'm also pleased to report that my infectious disease doctor - the doc who monitors my fungus - couldn't be happier with my current state.  My chest CT this week showed absolutely no signs of infection.  No fungus, no bacteria, nothing.  Furthermore she believes I'm in much better condition now prognostically than I was in December.  Waiting the extra two months (albeit because of a relapse) afforded me the ability to enter transplant much healthier compared to December.  Not that I was necessarily unhealthy then, but I still had pneumonia and was still close to my surgery date.  Now she can find absolutely nothing on my scans and believes it is likely the fungus will give me minimal problems, if any, during transplant.  She said several times how impressed she was with my ability to heal and how far I have come.  It was great to hear.

The next step is to meet with Dr. Oran on Tuesday.  There she will discuss all my test results and give her final recommendation for or against transplant.  If she gives the go ahead, my nurse coordinator, whom I met with this week, said I will most likely be admitted either Thursday or Friday, 18 or 19 Feb (less than a week!).

In the transplant system, days are numbered in reference to the day I will receive the donor cells.  This day is referred to as Day 0.  Any day before that is a negative day; any day after is a positive day, counting consecutively up or down.

On my admission date (Day -7) I will report to the hospital and first have a central line placed.  This is similar to a PICC line in that it will be used to deliver drugs and draw blood.  Instead of being located in my arm, however, the access ports will be located on the right side of my chest.  The tube will then be tunneled under my skin up towards my neck.  It will enter one of the large veins in my neck and travel to my superior vena cava, ending just outside the opening to the right atrium of my heart.  The advantages of a central line over a PICC is, since it is tunneled under the skin before entering a vein instead of inserting directly into a vein, the chance of sepsis (an infection in the blood) is greatly reduced.  This is especially important during transplant since my immune system will be weakened for a much greater period than with regular chemotherapy.  It will take about an hour to place the line.  Once it is in I will be brought up to the transplant ward.  The first day will be mainly administrative work prepping for the upcoming procedures, so I won't have anything else done that day.

Once on the transplant ward I won't be allowed to leave my room until my counts return.  I can have visitors as long as they're not ill, but only three additional people are allowed in my room at a time.  There are special air filters in each room to remove airborne pathogens, but they overload if more than four people are present.  They will bring exercise equipment into my room to allow me to be active.  I'm allowed to have outside food brought to me (thankfully!) and I'll have access to a refrigerator so I can keep cold snacks around.

I will begin five days of chemotherapy on Day -6 in order to suppress my immune system in preparation to receive the donor cells.  I will also begin immunosuppressive drugs starting a few days before Day 0.  On Day -1 I will have total body irradiation (TBI) to further suppress my immune system.  The dose I'm receiving is 200 centiGray (cGy) (1 Gray = 100 rad), which is a relatively low dose.  In comparison, if I had a kidney tumor I would receive a radiation dose of 3000 cGy; if I had a brain tumor I would receive 5000 cGy.  Since it is such a low dose the likelihood of side effects is minimal (although everyone reacts differently of course).  The doctors said the most likely short-term side effects I'd have would be nausea and hair loss.  The likelihood of more serious long-term side effects - organ damage, sterility, decreased hormone production, and secondary cancers - are also minimized.  Cataracts are still a possibility, even at this dose, but I was assured if they did occur they're easily treated.  They wouldn't likely appear for 15-20 years as well.

Day 0 would be when I would receive the harvested stem cells from Mitch.  They would be infused similar to any other blood product.  A very anticlimactic event, as Dr. Oran put it.

Once the cells are infused I again will play the waiting game.  It can take anywhere between 12 and 30+ days for my counts to return and I won't be discharged until after my WBC is over 1000 cells/µL (1.0 on my scale from before).  When my counts do return it will be a much slower/less dynamic process compared to when they returned after chemotherapy.  This is because it will take time for the donor system to implant and begin to function normally.  The lab will monitor the percentage of WBCs that are mine compared to the donor by comparing the DNA of the cells present (how cool is that!).  The type of chemo and radiation I'm receiving only suppresses my immune system, it doesn't wipe it out completely. So initially my counts may be a mixture of Mitch's and my cells.  Eventually the donor system will destroy all my remaining cells, but this may take months.  My blood type will also switch to Mitch's (from A to O - again, super cool!!), but this process may take up to a year.

Once my counts are up and if I'm in otherwise good general health, am stable and eating, I will be discharged.  For some patients this is as early as Day 12!  The transplant center requires that I have a 24 hour/day caregiver through Day 100.  This person or these people will ensure that I'm taking my medications on time, watch me for signs of complications, and transport me to the clinic for appointments (which will be daily at first).  Usually by Day 100 most patients have stabilized and are feeling well enough to not need additional assistance.

That's a quick run-down of what will happen over the coming months.  A lot of what will happen depends on how things go.  If I have lots of complications or other problems I'll be hospitalized longer than if things go smoothly.  They say a related donor like Mitch who's a 100% match is the best possible donor scenario, so hopefully complications related to donor-recipient matching will be minimal.  I only have to watch out for infection and hope my kidneys and other organs cooperate.

All this is heavy, but I'm ready to be well again and I know this is how I will get there.  It won't be an easy spring, but I can make it through this.  I've come through so much, I'm certainly not gonna stumble this close to the finish line.

The Simple Things in Life

Today I finished my IV antibiotic.  That means my PICC line is no longer needed and was removed!  The best part of losing my PICC isn't that I don't need to care for it anymore.  It's that I can now shower without a bag around my arm.  Seriously!  I haven't had that luxury since June 2009.  It was great. :D

You can see where the two PICC lines were placed in the inside of my left arm.  The larger, darker spot on the right is where the PICC that lasted from July to January was.  The smaller, red spot on the left is where the line was removed today.

An Update....Finally!

Sorry for the lack of posts.  Here's a rundown of what's happened since my last update.

I started spiking fevers the night after my last post.  For about a week I ran temps up to 104˚F.  I spent almost all that time sleeping.  They eventually determined that my PICC line had become infected.  Unfortunately that meant it needed to be removed.  They couldn't put a new one in until after the infection was under control, so that meant I had to deal with an IV in my hand.  The worst part of it is that they can't do blood draws from an IV, so I had to get stuck, sometimes up to three times a day, to draw blood.

RIP PICC Line

July 2009 - 28 January 2010

In the photo, you can see the three ports in the center, that's what was outside my body.  The rest of that tube went through a vein in my arm, through veins in my chest, to my superior vena cava.  The tip ended just outside my heart.  It's about 46cm total in length.

After about a week of treatment the infection came under control.  I was terribly weak from the fevers and not eating, so I spent the next week sleeping and gaining my strength back.  I felt decent but was easily tired.  And I still had no PICC.

I had a bone marrow biopsy on Wednesday, 03 February.  On Friday I received the results:  <1% blasts! I am back in remission.  By then my counts had also recovered.  I was also surprised to learn that they were discharging me that day too!  I was being sent home on IV antibiotics, so I had another PICC line placed (so I could dose at home) and they sent me on my way.

So now I'm home and enjoying every minute of it!  I get tired fast and take lots of naps, but it is such a pleasure to be sleeping in my own bed, eating my own food, and seeing Yuki.

Tuesday morning I start workup week again in preparation for transplant.  Dr. Oran said things should happen quickly, so I might be back in as early as the end of next week.  Definitely before the end of the month, assuming everything goes smoothly during workup.

Thank you to everyone who has sent cards, visited, or emailed.  I know I'm terrible at replying, but be assured I have read everything and appreciate all the thoughts and wishes while I was hospitalized.  I won't be posting to this blog everyday while I'm out, but will keep it updated as things progress.