“Houston, we have a problem!”
Real estate news coverage is suspended from December 21 through December 31. Regular real estate related news posts will resume on January 1, 2014. For those who stopped by expecting real estate coverage, I apologize for the inconvenience. Since the end of the year is a time of family and reflection, and since it’s not a time many people focus on real estate, I decided to offer something different.
Tony Bliss was a close friend of mine who lost his heroic battle with cancer in late 2012. He wrote about his experience in a series of gripping posts that reveal a beautiful and courageous man. I was deeply moved by these posts — some of which are admittedly difficult to digest. This writing is raw. Real. Be forewarned that if you read what follows, you will never be the same. You will laugh, cry, fear, hope, and stare into the abyss of your own mortality. I am honored to share this great work with you here.
Tony Bliss contracted Chronic Lymphocytic Leukemeia (CLL), which you can read more about at the bottom of the post. The disease is deadly, but it has a cure, which gives suffers hope of full recovery. That feature of the disease helped Tony find hope despite the long odds.
This post introduces Tony’s wonderfully humorous style, and describes his journey to get a cure. This wasn’t just life-extending treatment. He went there with the belief that he would go through a procedure (a painful one, no doubt) and he would leave a a new man free of disease. We all wish it would have worked out that way.
As many of you know, my CLL recently took a turn for the worse, and about mid-March it was determined that I suddenly had to move straight to a bone marrow transplant. What that meant was “Houston, here we come!”
No, no, not NASA Houston, they’re not jettisoning me into space or anything!
I meant MD Anderson, home to one of the finest medical facilities in the United States, and a premier location for performing bone marrow transplants.
Main building, MD Anderson medical complex
So, now that I’m at MD Anderson, everything must be hunky dunky, right? Alas, nothing has turned out to be that simple. As many of you know, I’ve developed a reputation for being an “over-achiever” when it comes to CLL – if something could go wrong or right, it usually went wrong, and I “over-achieved” in many areas. The actual transplant happens to be another area where the Over-achiever has struck again!
Here was my original schedule:
- Receive in-patient chemo back home from May 15-21
- Arrive Houston June 4
- Perform all the pre-transplant testing from June 5-13
- Receive pre-transplant chemo where they kill all (and I mean ALL!) your bone marrow and immune system, so the new marrow can do it’s job
- Receive the actual transplant June 22nd – my “new birthday”, if you will!!!
Had that schedule prevailed, I would now be 4 days into my new bone marrow.
In the words of Monk, “here’s what happened:”
I did receive chemo at home from 5/15-5/21 as scheduled. So far so good. I was released about 2pm that afternoon, and then spiked a fever that night and wound up back in the ER about 10pm that night. 8 hours of freedom, during which I mostly felt awful, that cost me another $250 hospital admission fee that night! Sigh…
This re-admission in and of itself is nothing new. I’ve spiked a fever after most of my chemo treatments, and for safety purposes they admit you and make sure you don’t have any crazy infections that might kill you (yes – kill you dead! That’s why they admit you, it can get serious in the space of a few hours). The difference this time is that I appeared to actually HAVE an infection. All the previous times I spiked a fever once and that was that. They gave me some antibiotics, I hung out at the hospital grumpily for a week feeling like I could walk a marathon if I wanted to, and eventually we’d all agree I was ok and they’d let me go back home.
But this time my body kept getting fevers, and I kept getting rigors (extreme chills where your whole body shakes, rattles, and rolls like you’re a little bit possessed). So I spent two weeks in the hospital, with them trying (and failing) to find the source of the problem. They tried all different kinds of drugs on me, they removed my central line (the port installed in my chest they delivered chemo and antibiotics through), and they even called in Infectious Diseases! Eventually we all decided it must just be the cancer itself causing the problem, and they finally agreed to release me – on June 4th, the day we were supposed to be driving to Houston!!
So we were released about noon on the 4th, and by 4pm that afternoon we had the car packed and were on the road to Houston. Transplant, here we come!!! At this point we thought we were still on schedule, and that my testing would start the next day. Little did we know…
Houston, or “This is a complex situation!”
I felt better immediately upon leaving the hospital, so even after not arriving at Houston until after midnight I was practically bounding out of bed the next morning, sure I was mere days away from finally getting this transplant thing going. The naiveté of the Over-achiever strikes again!
Long story short, though I was feeling much better I was still very weak, and very short of breath. I was having trouble walking from the car to the hotel room, whereas 4 weeks prior I was walking 45 minutes twice a day and breaking a good sweat. So all was not yet well in Bliss Land. So we get in to see my doctor here, and he’s reviewing my home hospital reports, and basically he says “we can’t do the transplant right now.” Boom! Done! Deborah and I looked at each other and were practically in tears in the space of about 30 seconds. This is NOT what we were hoping to hear!
As it turns out, the doctor’s concern was a single “bulky mass” lymph node just under my rib cage that was revealed during a CT scan. His concern was that it was still growing despite the recent chemo, and if it was still growing then the transplant might not be effective. He was very concerned and a bit perplexed about what to do, and the phrase he kept coming back to was “this is a complex situation!”
At that point, June 5, the transplant was on hold with no scheduled date. The plan was to go forward with the remaining testing I had scheduled for that week while he consulted with various other experts at MDA, and we scheduled another appointment with him for June 12th – a full week’s delay, without knowing if we could proceed with the transplant – ouch!
The Plot Thickens, and I Thin!
Over the following week, from 6/4 – 6/12, I undergo all the tests that were planned for me – PET scan, blood draws, bone & bone marrow samples were taken, etc. I also had to do a full respiratory test, which basically consists of getting in a booth and making out with a plastic mouthpiece that tries to suck the lungs out of your body.
No, I need those lungs!
Actually, that’s not true – the patient has to blow into the mouthpiece, but still, it feels like your lungs are going to spill out in the process!
Over the course of the week I started to feel weaker and weaker, and my breathing was more and more difficult. A couple of times Deborah had to wheelchair me around MDA, much to my dismay – I literally didn’t have the energy to stand in the elevator, for example.
I also experienced regular nausea (and yes, accompanying vomiting) for the first time in the whole 3.5 years I’ve had this CLL. I quit eating and lost a ton of weight. From mid-May to mid-June I dropped 30 pounds.
Clearly something was wrong besides the ye olde bulky mass.
Finally 6/12 arrives and we meet with the doc for our momentous news – what’s the new transplant date?!? And he says, “I don’t think the bulky mass is a problem, it does NOT appear to still be growing. However, the bronchoscope test (a highly unpleasant maneuver where they shove a tube down your mouth into your lungs and take samples of whatever gunk is in there) reveals that you have a type of pneumonia. That has to be fully treated before we can move to transplant, so…we’re admitting you to MDA right now, and we’ll begin treatment for that immediately. That will take 2-3 weeks to resolve.”
“Oh – and because of all these delays, we’ll also need to do another round of chemo before you can do the transplant…”
At long last we arrive to where I am today, right now. I’m currently incarcerated at MD Anderson, room 1646, through the end of today, 6/26. I have been here for the past week being treated for the pneumonia, and, fortunately I feel a approximately a million times better. I’m walking a mile around the halls again every day, my appetite is back, and no more vomiting, wohoo!!
In another excellent turn of events I’m also receiving my next round of chemo! That’s been the big silver lining in the past week – it was determined the pneumonia treatment and the chemo would not adversely interact, so we have been able to run them simultaneously. This will hopefully minimize any additional delays between now and the transplant date.
I’ll be released tonight on my own recognizance (well – really Deborah’s recognizance!), and I will continue to take oral medications for the pneumonia as we hang out in our comfy cozy room at the Holiday Inn Express (thank you, medical discount rate!!), which still won’t be considered cured for another couple of weeks. Naturally I won’t be able to go home during that time, b/c I’ll be coming into the clinic every other day for blood work, follow-up appointments with doctors, etc. We will be WELL acquainted with Houston before this whole thing is over!
As for the transplant…
In 3-4 weeks I will have another PET scan. This will show definitively how effective this latest round of chemo has been. The goal from a transplant perspective is to have the CLL “as close to full remission as possible” before pulling the trigger on the actual transplant – the farther you are from full remission, the bigger the risk that the transplant will fail. NOT GOOD! So this PET scan will be all-important and can have three possible outcomes:
- It will show I’m in remission, and we’ll be able to set a transplant date for real
- It will show that the chemo (which is the first time I’ve had this particular blend) is working, but hasn’t pulled it down close enough to remission yet to do the transplant. In that case we would do another round of this same chemo and then presumably (hopefully!) after 3-4 weeks recovery be ready for transplant
- It will show this new chemo didn’t really work at all, in which case it’s back to the drawing board to try another kind of chemo, possibly some more off-the-wall, clinical trial-type stuff. Translation – who knows WHEN I’ll get a transplant if the result of the PET scan is #3!
I’m sorry this was such a long post – future posts will be much shorter, I promise, and this blog should make it easier to keep everyone informed going forward. Feel free to continue to text when you feel like it, and I will get back to you as the situation allows. For now, unfortunately, everything is basically on hold, and I have no idea when the transplant will actually occur.
As always, I appreciate any prayers and thoughts you send my way. The waiting is the worst part right now, the not knowing when the transplant will occur. So send some patience our way, please, as we will need it!!
As it turns out, after carefully reading the linking/quoting policies of several major health websites, they all seem to be touchy about people directly quoting their material, and in some cases even linking to their pages. This is strange and frustrating, because there are some very good summaries available out there that I had hoped to plug in here to give the reader a brief (but technically accurate!) description.
Instead I’ll do some paraphrasing to come up with my own brief interpretation, and then I’ll provide suggested resources for those who wish to dig in a little deeper…
Chronic Lymphocytic Leukemeia (CLL)
CLL is a disease in the cancer family. The underlying problem with CLL, just as with any other cancer, is that some cells in the body multiply more quickly than they are supposed to, and begin to cause problems around other parts of the body. Many cancer types result in tumors, where the rogue cancer cells penetrate into organs or other areas and congregate.
CLL is a bit different, because it’s a blood/bone marrow cancer. As a result it doesn’t really form tumors – rather, it clogs your blood stream and bone marrow with an excess of white blood cells, and causes problems that way.
Who Gets CLL?
CLL is the most common blood cancer, with approximately 15,000 new cases diagnosed each year. Most new patients are diagnosed at age 50 or above, though it can occur in people much younger. For example, I was 42 when I was diagnosed, and had probably had it since I was 41. It occurs more frequently in men than women (sorry, guys!).
What happens when you get CLL?
There are 4 major families of leukemia, but I’ll stick with CLL here, and you can refer to the other types at the references provided below.
The “C” in CLL stands for chronic, which in the context of this disease means “slow growing.” What that really means, according to my understanding, is that the bone marrow produces an excess of white blood cells. In CLL, these cancerous white blood cells do not have the proper termination instructions built in – that’s the mutation that makes them cancerous. So the bone marrow keeps churning out new white blood cells to replace all the ones that are supposed to be dying on schedule, only none of them are dying on schedule! So people with CLL have an excess of octogenarian white blood cells, basically.
This excess of cells can cause myriad problems over time, including problems in the spleen, liver, and of course lymph nodes, as well as other areas of the body.
CLL has been loosely grouped into two different classes. The classes don’t have specific names, but their life expectancy and treatment plans are very different.
One type is very slow-growing. Patients with this form of CLL may never require treatment and live for decades with the disease with little or no impact to their lifestyle, or they may be treated very infrequently. People with this version of CLL have an average life expectancy of 15 years. That may not sound like that much, but keep in mind that a SEER report conducted by the National Cancer Institute revealed that approximately 80% of patients diagnosed with CLL are age 55 or older, meaning that for many patients 15 years would lead to an average life expectancy.
The other major class of CLL grows much more quickly and must be treated using one or more of a variety of chemotherapies. The average life expectancy with this faster growth version is approximately 8 years. Naturally that’s the version I have.
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General Information Links
How to Become a Bone Marrow Donor
For many patients, the only cure is a bone marrow transplant. A blood sibling is your best chance for a match, but there’s still only a 25% chance per sibling that you will match, so it’s very important for unrelated people to register as bone marrow donors. My case is a prime example – my sister is not a match for me, and I’ve been fortunate enough to find an unrelated donor who is willing to save my life by donating his marrow (thanks, Anonymous Donor, whoever/wherever you are!!!)
Registration is easy and painless, and here are some links to different bone marrow donor registries that will be happy to help you sign up, or even help organize donor drives in your community!