Today marks another World Cancer Day, where we, the world, attempt to focus our attention on the deadly disease. There are many misunderstandings, misconceptions, and myths about cancer that could be eradicated rather easily with only a little effort on all our parts. It is hoped that by educating ourselves about the disease, and then, educating others we can increase awareness, ease minds, and most importantly, save lives.
Knowledge is contagious. Please spread the facts.
If you’re like me, you’ve probably never witnessed a bone marrow biopsy procedure before. That’s right, even though I’ve had more procedures done to me than I care to remember, I have never actually seen the procedure being performed on me. This is because, 1. I always have to lie on my stomach, and 2. I’ve always been too scared to try and look.
But during today’s procedure, I mustered up the courage and asked my herculean wife to take pictures of it so I could finally see what it was all about. I call my wife herculean because she’s been exceptionally strong and courageous for me throughout my entire cancer experience; and after I saw the pictures, it amazes me even more how strong and courageous she really is. I know for certain that if the roles were reversed and I had to be there to support her during one of these procedures, especially during the first time, I would pass out. For real.
I also asked my wife to take the pictures so I could share them with others who may be interested in learning and seeing what a bone marrow biopsy is all about. But please be warned, these pictures may be disturbing for some people. If you’re still interested, please click the more link. Continue reading “A Bone Marrow Biopsy”
Warning: This is potentially a TMI post. Read at your own risk!
Before my cancer and all the chemo, I saw myself similar to how Ricky Bobby saw himself in the movie Talladega Nights: I’m just a big hairy American winning machine, you know. That was me. I was confident, happy, had a wonderful family, a great job, felt strong and in okay shape, and I had a thick mane of hair on my head and a decent coat of fur all over my body. I was no back shaver, mind you (not that there is anything wrong with those of my friends who feel the need to shave the back…you gotta do what you gotta do) but I definitely had some hair to be proud of. But all of that, especially the confidence, the being in shape, and the hair, changed after the chemo.
Now I know some of you are wondering—I know I was before I started getting the chemo, so I asked my nurse—does one lose ALL their hair from the chemo treatments? The answer I got was that it depends. It depends on the person, the type of chemo, and the amount of chemo received. I would just have to wait and see.
It turned out that during the first phase, things moved slowly hair loss-wise. It took several weeks before any hair on my head started falling out and a couple more weeks before my beard began thinning out. I never noticed the loss of any body hair. I will say, it was very unsettling when the hair on my head began falling out in earnest and I would wake up in the morning to see big piles of it all over my pillow and bed. Once that started happening, I went directly to the barber and had my head shaved.
It’s not as easy as you think to get your head shaved. When I went, my regular barber was crowded so, not wanting to have to sit around and explain to the regulars about my cancer, I went to another barber that I had only been to once before. It was empty so I went in. The barber was a female and after I sat down and explained that I wanted my head shaved, she almost seemed offended, but in a cheesy, middle-aged flirty kind of way. She gave me the third degree and wanted to know why I wanted my head shaved. Still in no mood to discuss my cancer, I just said something rather curt about me being sick of having such thick hair to mess with. She reluctantly began shaving it off, but as she did, she went on the whole time about how a guy should never shave off such a nice head of hair. (I have another story about my hair and my youngest son’s ill-fated attempt at trying to shave if off…but that’s for another time.)
I had a couple of weeks off between phase one and phase two treatments. During the time off, the hair on my head and face started growing back in rather quickly. But again, after a few weeks of the phase two chemo treatments, both head and facial hair began thinning out. Again, I did not notice the loss of any body hair. This time, because the hair on my head was so short, I was able to shave it off myself.
During the first two phases, while I did lose a lot of hair, I never lost all of it on either my head or face. But all that changed after I received the large doses of chemo in preparation for my bone marrow transplant. About two weeks after the treatment, hair everywhere began falling out. And by everywhere, I mean everywhere. After about a month, the only hair I had left on my body was my eyebrows and my eyelashes. My body was smooth as a newborn baby. I won’t go too much into details, but I will say, things feel a lot different without hair in the places where you’ve been used to having it. I was left feeling very incomplete and somewhat insecure. I didn’t like it at all.
But now, finally, it’s all coming back and I’m beginning to feel much more like my old self. And by old, I mean much older. As you can see, even though I looked older than my age before, this whole cancer ordeal has aged me even more. And even though I’ll still be completely gray on top, I’ll be glad to have it back and I promise not to complain when it once again gets too long and too thick and too hot on my head. And I won’t, in frustration, ask my son to shave it off (again, we’ll leave that story for another day).
It seems to me that the word “chemotherapy” is one of those rare words that can instantly conjure up fear and images of pain and suffering, similar to words like “Holocaust” and “September Eleventh.” Perhaps those comparisons are not exactly appropriate (and bordering on bad taste), but my point is, just hearing the word chemotherapy tends to scares us.
And for good reason, too. Chances are, we know someone close to us, maybe a loved one or a friend, who got cancer and who had to receive rounds of chemotherapy. And from them, we heard firsthand how tough it was on the body. We heard about the nausea and vomiting, we heard about how it attacks the intestinal tracks and causes mucositis, we heard about their inability to eat and the loss of weight, we heard about the lightheadedness and dizzy spells, and we heard about the hair loss.
But chances also are, even though we know the word and are familiar with all of the effects associated with it, we really don’t know what it is. Now, I’m not about to try to cover the many different forms of chemotherapy treatments that are available, you can do a quick search and find out all about them if you’re really interested, but I do think it’s interesting that one word can have such an impact on our collective psyche without us really knowing much about it.
One thing I can tell you about chemotherapy, the stuff is toxic. Take a look at the picture of my nurse at the top of this post. She has to take special precautions to ensure that she doesn’t come in contact with the chemotherapy. She has to wear a mask, a disposable suit that wraps around and completely covers her clothing, and special gloves that go over the standard gloves she wears. What you don’t see in the picture is that the nurses also have a special hat that has a clear guard to protect their neck and face. It looks similar to what a spot welder would wear. And then, after she is completely protected, she pumps that toxic junk right into me.
From my experience, it seems that whenever chemotherapy is discussed, we tend to focus on all the negativity associated with it–just like I’ve been doing in this post–and barely focus at all on its most important quality: CHEMOTHERAPY SAVES LIVES! It saved my life. And, like a miracle, it’s saving countless of other lives every single day. We all should give thanks to God for it.
At the beginning of any new journey, maybe it’s starting with a new company, going back to college, or signing up for fitness classes at the local gym, it seems that you can easily identify those who are just starting out. Like you, they are the ones who are just learning the ropes of the new system. They don’t know exactly what to do, where to go, or how to get there. Like you, they just look new. Over time, whether intended or not, a bond will form between you and the group of new travelers and you will begin to identify yourselves as a sort of class. Maybe you will become friends with some of the people from your class or maybe you won’t, but the chances are you will always feel a special kinship with those who traveled on your journey with you.
My cancer journey was no different. Practically from the moment of my diagnosis, I began to notice others who had also just begun on their cancer journey. New cancer patients are especially easy to identify: they are the ones who have a constant stunned look of disbelief on their faces; they are the ones who are irritable, stressed, and anxious, not just from recently having learned about their disease, but mostly from the side effects of the steroids and other new drugs they had just started taking; and they are the ones who still have their hair.
After diagnosis, I was immediately admitted to the hospital for the first two weeks to begin my initial phase of chemotherapy and medications. From time to time I would see other new cancer patients as either I or they walked laps around the ward; or, I would see them pass by my door on their way to the little kitchenette for the always available ice cream or cup of noodles. Sometimes we would wave or nod our masked heads at each other. Oftentimes, we would just simply shuffle by each other without any acknowledgement.
After I was discharged from the cancer ward, I was admitted to the Inpatient/Outpatient Clinic. At IPOP, new cancer patients usually have appointments every day. Every day, my wife—my caregiver, my inspiration, and my guiding light—would pack me up and drive me to the hospital. The drive could take anywhere from 45 minutes to an hour and a half, depending on Baltimore traffic. When I got to the hospital, I would reluctantly don my mask, reluctantly disinfect my hands, reluctantly enter the clinic, sit down, pull my ball cap down tight over my freshly shaved head, and glumly wait to be called by the nurse. Meanwhile, my wife, always positive, always cheerful, would sign in for me in the registry, make herself a cup of coffee, grab a magazine, and then sit beside me and try to cheer me up. Other familiar masked faces would also be there waiting with their caregivers.
Soon my wife became friends with several of the other caregivers and, through her reports, I would be able to track the progress of the other cancer patients from my class. It helped me to hear about them from my wife. Knowing that others are on a similar journey as yours, that others are just as confused, just as sick, just as scared as you are, provides a certain level of comfort and a sort of release. I was able to let go many of my fears and better accept my condition because I learned that nothing that I was going through was unique just to me.
Unfortunately, there are many, too many, cancer patients in my class. And even though I was familiar with all of them and drew strength from their silent encouragement and solidarity, I only came to personally know a few of them by name. And of those, I only know the current fate of two, which is too bad because I often think about all of those faces who I had come to know so well and wonder how they are doing now. I try not to wonder who didn’t make it.
Next year my cancer class will graduate. Sometime next year, we will meet with our oncologist and we will be released from his or her care. Our disability insurance will stop and we will hesitantly and apprehensively return to work. After graduation, we will be free and encouraged to begin other new and exciting journeys, which is why graduations are often called commencement ceremonies. And when our new journeys do commence, we will look around and see that there are others who are also just starting the journey, too. And, while we will hope that we never have to travel down the same road as we did on the journey we just ended, we will know that we will all be better travelers for it.
Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.
While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.
Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.
Email from Kurt’s doctor:
The bone marrow biopsy report is not back. However, all the news thus far is excellent. His bone marrow flow cytometry shows no leukemia cells. The most sensitive test for detecting leukemia is the BCR-ABL PCR. This result came back as undetectable (meaning no leukemia). These are excellent results.
UPDATE: In a subsequent email, Kurt’s doctor said that the preliminary result from the bone marrow biopsy also shows no leukemia. The final report won’t be available until next week but everything is looking good. Additionally, the BCR-ABL PCR test is more authoritative than the bone marrow biopsy.
It seems the better I feel the harder it is to keep folks updated on how I’m doing. Now that I am feeling better I have more options to do other things other than to sit and think about how bad I feel. Now, mostly I sit around and read and write and take walks with the wife and eat all of the delicious, healthy, cancer destroying foods that she prepares for me. So that’s why I haven’t been blogging or tweeting as much. Besides, it’s redundant for me to keep posting: feeling good again today day after day. But since I’ve stopped getting the regular doses of chemo and I’ve been taken off of most of my meds, that’s exactly how I feel. In fact, I feel better than I have in a long time, even since before my diagnosis.
Yesterday I met with my longitudinal doctor, that is, the doctor who has been my consultant and adviser since I was first diagnosed and who will be with me until the end. I have been seen by a boatload of other doctors for a boatload of different reasons, but it is my longitudinal doctor who I depend on most. I met with him and his boss. The purpose of this visit was merely a formality to give me one last checkup and their final diagnosis and authorization for me to proceed with my transplant. Everything is good. My counts are perfect and based upon all the tests I’ve had…spinal taps and bone marrow biopsies…the amount of cancer in my body is less than 0.04% or something like that. Pretty good, indeed.
I have only one more consult with a doctor between now and when I get admitted back into the hospital on 3/23/10. The consult is for the heart and as far as I’m concerned its just a waste of time…an evil plot to make sure I don’t stay away from the hospital too long.
Like I said, on the 23rd, a week before my transplant, I get re-admitted to the hospital so I can begin getting juiced up with some new kind of chemo. This kind will completely kill my bone marrow in preparation for the transplant. I’m definitely not looking forward to the chemo crud again, but it will mean I am one step closer to getting to the transplant and beyond. Again…pretty good, indeed.
So, as far as my blogging and tweeting go, no news is good news. I reckon once I get juiced up again I’ll be back to complaining on a regular basis as to how bad I feel. Misery loves company.
My wife ran into my doctor this morning while walking about the hospital. After exchanging pleasantries and having a discussion about setting up an appointment for me to meet the new head doctor of oncology, my wife asked my doctor what he thought about the possibilities of the match for my bone marrow transplant.
The doctor said the match is good news, of course, and then he went on to explain that out of the initial eight that were targeted from the registry for additional screening, there were actually two exact matches: the one MUD (Matched Unrelated Donor) that has us all excited, and one other. Unfortunately though, the one other match cannot be used. It cannot be used because the match is me.
The National Bone Marrow Registry and screening process really works. I do not remember when I registered but after all of these years it was still able to find me as a match for myself. Finding out I was a match for myself makes me both happy and a little sad. It makes me happy to know that the system works. No matter how long someone sits around in the system waiting, if their type is a match, they will be found. But it makes me sad in the sense that after all these years I was never found as a match for someone in need. And now, even if I come up as a match, I never can be of help, not even to myself.
Visit www.marrow.org for more information about the Bone Marrow Donor program.
Most of us are probably familiar with the television drama scene where the doctor, prim in his white lab coat, sits at his desk in his office with a husband and wife sitting across from him. The couple seems apprehensive, knowing that their doctor called them in to tell them something very serious. And then doctor gently breaks the news to the couple that the husband has cancer. When the couple hears the news, the wife softly sobs into her husband’s shoulder as the husband resolutely asks the doctor both what are his chances and what are his options. You can imagine how the rest of the story goes. It is a typical Marcus Welby M. D. scene. However, life is not a television show, at least it isn’t for me.
The Johns Hopkins University Hospital is located on the east side of Baltimore and the main hospital is very much an inner city hospital. So, after circling around the block several times in an effort to find a place to park, and after walking what seemed at least a mile in the rain (Can you feel the melodrama starting to seep in?), I entered the hospital way out of my element and more than a little upset about having a leg full of blood clots.
Languages other than English were being spoken. Even when English was being spoken, it was often as a second language. Other than the fact that I felt like I had entered a United Nations sponsored medical bazaar, the emergency room experience started out like most emergency room experiences: long periods of waiting while sitting in uncomfortable chairs in a crowded room full of loud conversations. Eventually, I made my way through the process: check in; vital signs taken and blood drawn; move to the next waiting room to be screened; screened; move to another waiting room to wait to be seen by the on duty physician; move to the curtain-enclosed room to meet with the on duty physician; more waiting.
By this time my wife had arrived. We both waited in the small room–a large nook with a hospital bed is a better description–behind a privacy curtain. The emergency room was busy and we heard all of its busy noises, including the on duty drunk moaning and complaining about something that I could not understand. Every time he would moan, someone would holler at him to hurry up and go to sleep. A nurse entered and quizzed me with a slew of questions while she poked and prodded with her fingers and hands and listened intently with her stethoscope. With the promise that the doctor would be seeing us soon, the nurse left my wife and me to continue our pondering as to why in the heck I had a leg full of blood clots.
Finding Out – Part I
Of course once I was diagnosed with leukemia I immediately understood why I had become so tired so often beginning sometime around the end of July 2009. Physically, the year started out great. I had ankle surgery in 2007 for a dislocated tendon on my left ankle so I had not really worked out since then. But at the beginning of 2009 my ankle felt pretty good and I began running and working out. I kept it up until mid-August when I had to stop because I just did not have the energy to work out any more. I assumed it was because of Lyme disease. I was infected with that garbage way back in 2005 and had been suffering from its symptoms–lethargy and achy joints–ever since. As a result, I was not too concerned about my health at that time.
It was not until mid-November when my body made some physical alterations that forced me to take note. I was out mowing the grass, typically a three-hour project, when suddenly all of my energy drained from me. I was only about an hour into the job but I had to stop. Football was on so it was not too hard to convince myself to take a break. I made it to the TV room, put on the game and kicked my feet up. Because I was so exhausted, I fell asleep almost immediately but was soon awaken by severe cramping in my left calf and foot. My feet and ankles occasionally cramp up when I sleep so, again, I did not think much about it, even though the cramps continued through most of the afternoon.
When I woke up the next day I had what I thought was a big charlie horse in my left calf. Also, my left ankle was swollen and sore. I wrapped them and off to work I went. This went on for a week when I went to the doctor’s for a check up. I still thought I was suffering from a muscle cramp so that was how I articulated the symptoms to my doctor. He checked out my leg and told me to come back in a week if the condition persisted. The condition persisted and by a week later, my entire calf and ankle had swollen to what seemed was double its size. Back to the doctor I went. My doctor was not available so I was seen by my wife’s doctor. By this time I knew I was not suffering from a muscle cramp. I thought that perhaps I got bitten by a bug or some other poisonous critter and that is what I told my wife’s doctor. She took one look at my leg and without hesitation told me that I was suffering from blood clots.
Blood clots!? What the–! What is a healthy, forty-four year-old guy like me doing with blood clots? I do not eat too much junk. I do not smoke. I drink too much wine and coffee perhaps, but is seems that they should thin my blood, right? And what the heck did I do all that working out practically all year for if I still ended up with blood clots? I did not have too much time to reflect in the doctor’s office because she immediately sent me off to the emergency room. On my drive over, I did reflect. More accurately, I stressed out on the fact that I may soon be on blood thinning medicine, perhaps even the same medicine that my father is on. I was still battling with my current state of affairs when I limped my way in to the emergency room.
Question: “Why was my diagnosis changed to Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis?”
Doctor’s response: Let’s focus on the bilineage part first. White blood cells can be of myeloid or lymphoid origin. When [Kurt] came to the hospital he had a high white blood cell count with mostly lymphoid cells. The high white count favored an acute leukemia. The first and most likely diagnosis is acute lymphoblastic leukemia (ALL). We then performed a bone marrow biopsy and flow cytometry that showed that 77% of his bone marrow cells were of lymphoid origin and that 1-2% that appeared to be of myeloid origin. This meant there were two lineages – lymphoid and myeloid, although the myeloid population was very tiny. In these cases, we design a therapy that targets both lineages. For lymphoid leukemias we treat with a lymphoid induction chemotherapy regimen, which in your husband’s case was E2993. For myeloid leukemias, we can treat with myeloid induction chemotherapy or for patients that are Philadelphia chromosome positive, we can treat with a tyrosine kinase inhibitor such as Imatinib (also known as Gleevac) or Desatinib (also known as Sprycel). Because [Kurt] was Philadelphia chromosome positive, the chemotherapy plan we designed for [him] was E2993 induction with Desatinib. I want to emphasize that if [Kurt] had simply Philadelphia chromosome positive ALL (in other words no myeloid cells) we would still use the exact same regimen of E2993 induction with Desatinib.
Now let me explain in more detail the diagnosis of chronic myelogenous leukemia (CML) in blast crisis. The pathologists emphasized to us that this was a challenging case. When the pathologists first gave us their analysis of the bone marrow, they also saw basophils and increased myeloid growth which suggested CML in blast crisis. CML is at first a slow growing disease but goes through 3 phases: chronic (slow), accelerated (medium), and blast phase (fast). Some people with CML to get from chronic phase to blast phase; others and we suspect, for [Kurt], this shift from slow to fast occurred over months at most. In blast phase (the fast growing phase), CML can make either or both myeloid or lymphoid blasts which is consistent with what we saw for [Kurt]. The definitive tests to prove CML are molecular tests and cytogenetic test in which we analyze [his] chromosomes. These tests confirmed the presence of the Philadelphia chromosome and also that the size of the BCR-Abl product was the p210 product. You can read more about this, but this p210 product is found in CML not ALL.
I want to emphasize, however, that we were thinking about both diagnoses from the start of [Kurt’s] care and that for both diagnoses, our treatment plan was exactly the same. Even though the p210 test was pending when we started treatment, we were confident that the chemotherapy plan we outlined would be the best treatment for both diagnoses. Our goal is to cure [Kurt], and the current plan of E2993/desatinib and transplantation is the best strategy for defeating his leukemia.