My Cancer:
After a jog one evening in September 2011, I felt pain in my right knee. I thought little of it initially, but it continued to bother me for weeks. At some point, I went to my general practitioner at the Davis Kaiser offices to see about it. By this time, the pain was accompanied by swelling. My doctor initially recommended ice and rest. When this didn't do the trick, he tried a Cortizone injection. The swelling did not respond to that either. The pain in the knee was getting worse and worse, forcing me to use crutches and putting me on a regime of painkillers like Vicodin. My GP then referred me to an orthopedist who ordered an MRI.
I remember feeling that the scheduled time for the MRI was too distant. The pain was getting very intrusive and I wanted to know the cause as soon as possible. Fortunately, I had the good sense to wrangle the system to schedule me earlier. Or maybe that was my wife's doing -- I don't remember.
I was having trouble getting through my day at work teaching math. I was getting winded easily. I remember some commutes home from work feeling exhausted and feverish while driving. By this time, I had night sweats that would leave me drenched. This is a lymphoma symptom which I realized from Internet research. I told my boss about the possibility of cancer. I would have to miss the rest of the semester and the next semester as well. He was accommodating and caring about me and my family and made things at work easy.
I got a call from the orthopedist some days after the MRI. What I had been calling swelling he called a tumor for the first time. I asked him if it could be cancer and he tentatively replied that it could be. I was referred to an oncologist/hematologist who saw me on the weekend. I remember when my wife Esther asked my oncologist what the likelihood was of my condition not being cancer, he responded quickly, "highly unlikely." I felt admiration for his forthrightness.
My second son, Hideyoshi, was born on the day of that appointment. I remember being able to drive my wife to the hospital in Roseville. I remember lying on the couch in the birthing room for almost the entire time because of my bone pain. I remember the ob/gyn in charge of the birth moving Esther's entire maternity set-up 10 feet closer to the couch so that I could be close to her. Hideyoshi was born healthy and I was happy.
In the days that followed, I stayed with Esther in a hospital room. I was mostly confined to the pull-out bed. The nurse who wheeled Esther out of the hospital commented to her about what a do-nothing layabout I was. Esther told her that I probably had bone cancer (note, my cancer was actually a blood cancer but a bone cancer like osteosarcoma was still a possible diagnosis in our minds). That shut her up.
I should note that this is the only bad story I have about a nurse and I don't think it's all that bad, just pretty funny. I have been cared for by dozens of nurses. They have all been fantastic -- like, way beyond expectation. I have so much respect for the work they do and the care, thoughtfulness, and kindness they do it with.
Anyhow, it was mid-December. The pain which had been just in my knee before, had now spread to other bones in my body like my shoulders and ribs. I also had a profound pain that I later learned is "numb jaw syndrome". My jaw, especially the left side, was numb throughout the day. In the evening, a spike of awful pain would shoot up into my teeth.
I had graduated to heavier painkillers like dilaudid and morphine. I was also taking ibuprofen and the vicodin. I remember not wanting to overdo these medicines. I'm not sure exactly what I was thinking. I do know that I don't find dilaudid and morphine pleasant though they do a swell job of killing pain.
Esther later remarked that she thought I was two weeks away from death at this point. When we recall these times, she often brings up an image of me, in bed, unable to hold a glass of water, with a tear rolling down my face in pain. I only remember snippets of things like this. I can remember talking to an advice nurse on the phone and getting an emergency prescription for painkillers. I remember telling the nurse that my pain was 8/10 when it was probably more like 10/10. I remember some of the pain -- it was the worst I've felt. Most of the really dramatic pain happened at night I think.
Of course, I was doing a lot of Internet searching about my condition and became convinced that I was indeed dealing with cancer even before I got a firm diagnosis from my oncologist. Specifically, I was convinced that I had primary lymphoma of bone -- a particularly rare form of lymphoma that shows up mostly in the bones and not much elsewhere. The clincher is when I searched for "numb jaw syndrome" and found that it was a symptom for this cancer. Along with my self-diagnosis, I found that the Internet indicated a very good prognosis for my kind of cancer.
I didn't really feel despair or anything. I sort of felt numbness and the immediacy of pain.
A bone marrow biopsy and a CT bone biopsy were the major diagnostic tools ordered by my oncologist. These were both done at a Kaiser hospital in Sacramento. For the bone marrow biopsy, I was given a dose of demerol and laid down, prone, on a bed. My oncologist applied a local anesthetic and pressed a specialized needle into my lower back . I remember feeling a lot of pressure, and finally, a lot of pain when the needle went into my hip bone. The pain only lasted a few seconds though, and afterwards, I felt fine. I had sensitivity at the biopsy site for a few days afterward, but nothing too painful.
The CT bone biopsy was more of a production. I was given fentanyl, a painkiller, and put into the CT (computed tomography) tube. A surgeon then went into my knee with a local anesthetic to sample tissue from the tumor itself. I don't recall any pain from this procedure. I had to ask to receive more fentanyl at one point. No one gave me any grief about it.
I also had a PET scan to determine the extent of my disease. The images that came back showed the cancer had spread throughout my skeletal system. They showed up as black splotches against grey bone. I still have a printout of the image on my refrigerator.
I remember that my oncologist said that a leg amputation might be necessary. He said it so quickly and at the end of an appointment that I didn't fully process it at the time.
When all the results of the testing came back, the diagnosis was diffuse large B-cell lymphoma (abbr: DLBCL) -- the most common subtype of non-Hodgkin's lymphoma. My cancer was indeed a primary lymphoma of bone, so it was considered stage IE (extranodal). If I had nodal involvement, then my disease would be considered stage IV. The good news was that treatment for DLBCL aims to cure the disease and is often successful.
Chemotherapy at Kaiser Sacremento:
My oncologist laid out a treatment plan consisting of six rounds of a chemotherapy regime called R-CHOP, spaced 3 weeks apart. R-CHOP is the standard chemotherapy regime for many types of non-Hodgkin lymphoma. R-CHOP consists of 5 drugs. Because my cancer was so aggressive, the expectation is that the chemotherapy would work with extra effectiveness. This is because chemotherapy targets fast growing cells, and aggressive cancers are especially fast growing.
The "R" in R-CHOP stands for a drug called Rituxan, developed by Genentech . It is a relatively new drug, getting FDA approval in 1997. It was a huge step forward in the treatment of non-Hodgkin's lymphoma after a long period of stagnation. It is also very expensive -- it costs on the order of 15,000 USD per treatment. I have heard a story from another cancer patient who was priced out of this treatment despite it being recommended by her doctor. The standard treatment for her cancer did not include Rituxan and so her insurance would not pay for it. Having to make the decision between non-treatment or treatment with a hefty medical bill, she declined treatment.
The chemotherapy began in late December. The first cycle was done inpatient (in the hospital) at the Kaiser hospital on Morse Ave. in Sacramento. The plan was for future cycles to be taken outpatient. The reason for the hospital stay was worry over some potential complications that would come with the first cycle that probably wouldn't be present in future cycles. First, was that I was still in dire pain and needed quite a lot of pain medication. I also did not eat much at all in the weak prior and was dehydrated. Second, rituxan is so effective at tumor reduction that a condition called tumor lysis syndrome can occur. This is when the cells making up a tumor start floating around in the bloodstream placing a heavy burden on the kidneys.
My memory of the first chemo cycle is extremely hazy. I remember not eating anything at all over the course of the stay, which I think was 4-6 days (can't remember well). Lots of nausea. I think I had Christmas and my birthday during that stay. I threw up a lot. I had a lot of pain medication, including my first encounter with IV dilaudid. This stuff is potent -- much more potent than the oral version. I do not enjoy the feeling much, but I can see how other people could get addicted to it. It certainly does a great job of relieving pain.
The effect of the chemo on the disease was striking. The tumor in my knee had dramatically shrunk -- for anyone with the before and after images, it was impossible not to see. Much of the pain in other parts of my body had diminished as well.
At some point after the chemo but while still inpatient, I had a lumbar puncture (a.k.a. spinal tap). There are some sites in the body which are considered "sanctuary" for cancer exposed to chemotherapy. The testicles and the spine are two such sanctuary sites where, if cancer cells are present, they are not exposed to the chemo drugs. Thus the need for a spinal tap. I don't remember if I felt a whole lot of pain -- I think I was drugged up pretty well. The lumbar puncture didn't detect any cancerous cells in my spine.
At some point, I got to go home. I don't remember much about this particular trip home. I was sent home with many medications. One was prednisone, a steroid, which is the "P" in R-CHOP. I wore a fentanyl patch which administers the painkiller fentanyl continuously. It would later cause me awful bouts of constipation (most painkillers have this side-effect). I got many anti-emetics (a.k.a. anti-nausea meds). The trio which I eventually settled on was Zofran, Compazine and Ativan. Zofran is the heavy hitter of the trio. If the nausea was bad enough that I was taking Ativan, I was almost certainly going to be sleeping soon. Ativan is a type of benzodiazepine ("benzos") which were popular for recreational use in the 1970s. I used it occasionally as a sleep aid as insomnia was occasionally a real problem.
It would be another 2 weeks until my next chemo, which was to be taken outpatient (meaning I leave the same day) in what is called the infusion area. It's a large room with many comfortable chairs, beds, IV poles, nurses certified in chemotherapy administration, and, of course, other patients. In addition to chemotherapy, this is where blood transfusions are done. I took my cycles of R-CHOP in a chair, usually over a period of around 4-6 hours. The infusion began by placing the IV and administering premedications. The only pre-med I can remember was Benadryl, which did a great job of putting me to sleep for the rest of the infusion.
Most of the chemo drugs were administered by drip bags hanging from the IV pole. However, one drug, I think it was vincristine (a.k.a. Oncovin -- the "O" in R-CHOP), was administered by the nurse through the IV via syringe over a short amount of time. It turned my pee red. Another of the drugs, Cytoxan (hell of a name), gave me tingles on the top of my head that were ridiculously uncomfortable.
I would typically end my infusion by throwing up, though I think this didn't happen on my second cycle. The nurses worked very hard to find a regime of anti-nausea medications that worked for me. The rituxan (that expensive chemo drug) seemed to make me especially nauseated (a non-standard response apparently) and so the nurses decided to give me a dose of IV Ativan prior to the rituxan. It evidently didn't really work but I truly appreciated the effort of the nurses.
After the chemo, I would be picked up because driving myself home was completely out of the question. I would typically be asleep by the time I got home and would stumble my way up to bed where I would sleep often through the day and through the night. The next days would typically be more fatigue, sleepiness and nausea.
The fatigue was the hardest part for me. I would be tired, like profoundly low-energy, by what once were simple tasks like going up and down the stairway of my home. So much that I mostly didn't bother unless there was a pressing need. I mostly just sequestered myself in a bedroom and rested. This was frustrating.
The nausea could also be very bad but the anti-emetics helped a lot. I don't recall throwing up a whole lot while at home in between the first-line chemos. I don't know how cancer patients went through chemo without stuff like zofran and ativan. I heard stories from veteran chemo nurses that in the bad old days, patients were given a bucket and a tissue. Not cool. I am grateful to modern medicine.
The sleepiness would generally subside 24-36 hours after the chemo, leaving behind the nausea and the fatigue. The nausea went away after about a week and a half, and I would generally have enough energy to drive myself around and do small trips in the week before the next chemo (recall: my regimen had 3 weeks between cycles -- some people only have 2 weeks!). I would say that during that third week, I was at around 50% of my healthy energy level.
Although I was out like a light for the time immediately following the chemotherapy, I still had many days when insomnia was a big problem for me. I think it was mostly due to the prednisone -- insomnia is one of the short-term side-effects. In fact, while I was on the drug (for the 5 days after every chemo), I would often get a strange tingling tense sensation in my shoulders. I think it made me a bit anxious. I took ativan to try and combat the insomnia, but it didn't always work.
My hair fell out after the second cycle of chemo I think. Maybe "fell out" is the wrong way to describe it. Rather, the hair became really easy to pull out. Running my fingers through it would pull out a very large clump. I pulled out as much as I could. I still had a few hundred hairs stuck in my head. It was pretty funny looking. I also ended up losing my facial hair, my underarm hair, some of the hair on my arms and legs, my pubic hair, and my eyebrows. Hair loss was not a big deal for me -- such things don't really upset me.
More upsetting was my inability to think effectively. I can recall the sensation of having a concrete block in place of my brain while doing chemo. Doing any serious contemplation was out of the question -- maybe that was fortunate. This condition might be what is commonly referred to as "chemo brain". I'd call it that.
After the second cycle of R-CHOP, I had a PET scan to determine the extent of disease. The results were striking. All of the disease which was present in my diagnostic PET scan was completely gone in the second PET scan. Looking at the images, it was impossible to miss. The doctor reviewing the PET scan wrote that I had experienced "a near complete and dramatic response to treatment." It was amazing news.
R-CHOP chemo is good. In fact, for those with DLBCL, a standard R-CHOP regime will get them to a state of "complete remission" with very high frequency -- something like 90%.
One thing that happens during this sort of chemo is that your white blood cell count (WBC) gets very low. As white blood cells are the main defense against infection of all sorts, it is very easy to become sick during chemo. Sometimes, I was prescribed Neupogen which is a drug which stimulates white blood cell production. Neupogen is given via a self-administered shot in the belly. The injection is a little bit painful, but not too bad. However, the symptoms that sometimes followed, most notably bone pain, could be very bad.
When WBC is low, any little fever is a big deal. The standing order was that I call the oncology unit or go to the ER whenever my temperature was at 100.4 degrees F or higher. This happened to me twice over the course of my first line chemo. Not surprising as I have two children (3y and 6mo at the time) who are both undoubtedly excellent vectors for disease.
Both fevers sent me to the ER. The Morse Ave. emergency room is not a very fun place to be. Lots of moaning people, people lying still on stretchers in the hallway, and from my point of view, lots of sick and possibly infected people. In any case, while I was there, blood cultures were taken and I was put on a broad swath of antibiotics. The big concern was for infections like pneumonia or bronchitis. Fortunately, I think both fevers were due to a viral infection like a cold.
I was on painkillers for the first three cycles of chemo -- I wore a fentanyl patch. They were annoying as they caused me terrible constipation. I thought that I would have bad withdrawal symptoms trying to quit the patch cold turkey as I did, but it didn't seem to be that bad of a problem. I guess I was on a relatively low dose.
Autologous stem-cell transplant at Stanford Hospital:
My first-line chemotherapy treatment ended after 6 cycles sometime in early April. Yet another PET scan and a bone marrow biopsy confirmed that I was in complete remission. However, the recommendation of my oncologist was that I get another treatment called an autologous blood and marrow transplant (BMT), also known as an autologous stem cell transplant (autoSCT). The reason was to reduce the probability of the cancer returning. I agreed to the treatment. The transplant would be done at Stanford Hospital in Palo Alto.
There are 5 phases to the BMT process. The first is mobilization in which stem cells (cells that produce the various types of blood cells in the bone marrow (not embryonic stem cells)) are moved into the bloodstream. The next phase, apheresis, is the process of harvesting these stem cells from the blood stream. The cells are then frozen for use later. Next, the preparative regimen is applied -- this basically means a whole lot of high dose chemo. The chemo wipes out your existing marrow pretty thoroughly and hopefully, in the process, destroys the cancer as well. Then, transplant occurs. After that, it's recovery.
The BMT process is chronologically organized around transplant day which is often referred to as "day-0". There is a spiel some of the doctors and nurses like to give about how this day is something like your rebirth or something, but that kind of thing doesn't appeal to me.
In order to facilitate the many infusions, IV meds, and blood draws I would be having, a central catheter was placed. This was a "Y"-shaped tube with one end in my chest in an artery, and the other two ends serving as ports similar to what are found on IVs. Placing the catheter was a simple surgery. I was given fentanyl I think as a pain-killer. I was in and out in the same day.
Mobilization started around day -30 (a month before transplant). For me, mobilization involved some chemotherapy and lots of neupogen. The first couple of infusions were Rituxan which was not so bad. However, I also received high-dose Cytoxan which was a real beast. I had tremendous nausea and fatigue from it. There is a problem with the chemo settling in the bladder and causing irritation and problems, so I was given Lasix -- a drug to make you urinate a lot -- and tons of fluid to keep everything flowing.
After the Cytoxan, I was taking two syringes of neupogen a day for about 9 days. This was to over-stimulate the production of marrow cells, some of which would find their way out to the bloodstream. For the first two days and the last two days of the neupogen, I was getting very bad bone pain, especially in the hips. It was waves of pain up and down my back as my bones went into overtime making cells.
The beginning of mobilization also meant the beginning of anti-infection tactics like the HEPA filter mask and the restricted diet. I was to wear a mask whenever I went pretty much anywhere, though I could take it off inside my own home, on the inside of cars, and inside sterile hospital rooms. The mask was really pretty annoying -- it was tight around my head and made breathing more laborious. But like most petty annoyances, it became something I got used to eventually.
The low microbial diet was designed to reduce exposure of bacteria. This meant no food from restaurants and a list of foods I was to avoid. This included things like berries, yogurt, honey, raw nuts, uncooked meats. I was mostly vegan at the time, though I dropped that in favor of being flexible with what I ate.
I also had to have a thorough teeth cleaning. Nothing unusual about this dental procedure.
The day before I was scheduled to go to Stanford for apheresis, I spiked a fever which necessitated a trip to the least fun place in the world: Morse Ave. Emergency Room. I stayed overnight. The next day, the doctors at Kaiser were considering pulling my central line just in case it was the cause of my fever, but I avoided that ordeal. I was then transported via ambulance to Stanford Hospital. Yes -- an ambulance ride from Sacramento to Palo Alto -- medical insurance is a very necessary thing and I didn't pay a dime.
For the first time, I was staying in a bed in the BMT ward of the hospital. For this first go round, I shared a room with an older gentleman who was in the recovery phase of his allogenic transplant (donor stem cells are used). I guess neither of us were immune compromised enough to justify a room to ourselves. He was in good spirits 30 days or so after his transplant, though I must say I saw him a month later in a different context and he looked totally wrecked. It's a bit haunting -- he was a very vital active patient when he was my roommate. When I saw him later he had turned into a zombie. I didn't say hello. I was about 30 days away from my own transplant at this time (day -30).
I'm pretty introverted. So maybe it is not so interesting that I felt no desire to speak with anyone who was going through the same thing I was. Later, I read someone who had a similar account while she was going through a BMT in the juvenile ward. She said something like, "You don't make friends with those travelling with you through hell." which admittedly, sounds wrong. But somehow, in practice, in my experience, it's right on the nose.
While at Stanford, my fever went down enough that the next day the doctors felt comfortable starting apheresis. This involved running my blood from one end of my central line, through a machine which spins the blood thus separating the various cellular components of the blood by the magic of centripetal force, collecting the desired stem cells, then pumping the blood back into my body. It was a simple procedure that took around four hours and was totally without side-effects.
Apheresis is given 1-5 days. This wide time frame is to ensure that enough stem cells are collected for the transplant twice over (for backup purposes). If not enough cells are collected on the first day, the apheresis process is repeated the next day. I guess the neupogen worked really well for me because apheresis had collected four times the number of required stem cells on day 1 alone. WOWEE!
I went home after that. I had about two weeks of freedom before the long hospital stay would come. It was pretty stupid -- finally feeling somewhat well and human again only to have to check myself in for the serious stuff. Of course, I tried my best to cherish that time but I have to admit that having a BMT in the near-future kind of cramped my style.
I checked into the BMT ward for the second time on day -7, one week before transplant day. For this stay in Stanford Hospital, I had a single room in anticipation of the obliteration of my immune system. From the perspective of a patient, the ward is a organized like a torus with patient rooms along the outer rim and nurses stations in the middle. There were 22 beds total. Patients were encouraged to walk the circle in the ward whenever they felt up to it. 12 circuits was a half mile.
The routine at Stanford was fairly consistent. It started with a visit from a group of BMT specialists in the morning. My own BMT doctor was never part of the group but this was surely happenstance since other doctors who had BMT patients on the ward were part of the group. They visit every patient on the and give the patient an update on how they are doing. Aside from the morning visits, I never saw a doctor.
Nurses visited every few hours to check on me, administer meds or take vitals (blood pressure and temperature). They worked 12 hour shifts changing at 7am and 7pm. I believe each nurse was assigned 2 patients per shift. During my three week stay in the hospital, I probably was cared for by ten different nurses. They drew blood through my catheter every evening to monitor blood cell counts (red blood cells, white blood cells and platelets). A calender was hung up in the room and written on it were my daily blood counts.
I really can't say enough good things about the nurses. Their care was so competent, while also gentle and kind. They were smart and confident and they made me feel better about my predicament with their strength. I never felt uncomfortable around them despite being ridiculously vulnerable. I feel grateful to them.
Nurses' assistants were also frequent visitors who did routine things like vitals or changing linens.
Food was ordered via the in-room telephone. There was a fairly extensive menu consisting of all sorts of interesting sounding food like daal, stir fry, hamburgers, pizza... lots of stuff. I mostly stuck with familiar food since I was throwing most everything up and throwing up weird food seems worse than throwing up the usual. I was on a restricted diet, but this never was a problem. The quality of the food was fine, and it was far far better than the utter shit you get served at Morse Ave. Kaiser -- Stanford hospital food is edible. I drank a lot of Gatorade. They wanted me to drink Ensure, but I refused.
There was good wi-fi in the hospital which I used a lot. There was a TV in a room which I didn't use. There was a telephone which I also didn't use so much. I mostly entertained myself with the Internet (which I'm really good at), books, and video games.
Like I said, I checked in on day -7 of my transplant. This was the start of the preparative regimen of high dose (insane) chemos designed to destroy my existing stem cells and any sign of cancer. During the week leading up to transplant, I got three chemos. I alternated between chemos and a day of rest.
On day -6, I had the first of the insane chemos called BCNU. This is a drug that is suspended in alcohol so in addition to getting a lifetime dose of the chemo drug in one go, I was also getting the equivalent of six shots of vodka. This did not make the experience pleasant. In fact, BCNU was the worst chemo I've ever had, not close. Here is what I wrote many hours after:
"the hardest chemo I've had thus far. Feels like a hangover -- headache and nausea. Becomes difficult to move limbs. Blood pressure plummets. Breathing becomes short and shallow. Heart feels like it wants to leap out of my chest. Rigoring lasting for hours. throwing up. pain in the throat. Infusion takes 3 hours. Symptoms last from 1.5 hours in for about 6 hours. It gets better. I can type this stuff now about 7 hours."
Time to move on... thinking about and remembering this chemo is making me feel sick to my stomach as we speak.
Day -5: day of rest. I think I mostly slept.
Day -4: High dose chemo: VP16. Also suspended in alcohol. It was not as bad as the BCNU but still extremely awful. No rigoring. I don't think my blood pressure dropped nearly as much. God, writing this stuff down is making me feel sick.
Day -3: rest.
Day -2: Cytoxan -- again. This was the same drug I had during mobilization. It was the easiest of the three chemos I had that week. If it was a piece a cake, I probably threw it up into a bin by my bed.
Day -1: rest
Day 0: Transplant. This was very anti-climactic. The previously collected stem-cells are thawed out in IV bags and are put into the body via the central catheter. It was warm going in and left a strange metallic taste in my mouth. Apparently, you smell like creamed corn for a few days after transplant (no shit). I didnt notice this at all though.
For the days that followed, I mostly stayed in my hospital bed. Every morning, a nurse would come and let me know about my blood counts. I watched them plummet to single digits of white blood cells per deciliter, then slowly rise as the stem cells were successfully engrafting and beginning their production processes. I tried to exercise when I felt I could -- a recumbent exercise bike was put in the room which I used a few times, and I sometimes did laps around the BMT ward with IV pole in tow (24 laps == 1 mile).
The most infamous and painful symptom that occurs during a BMT is mucositis. It is the inflammation of the GI tract from mouth to anus manifesting in, at times, scads of painful and horrific eruptions. I am happy to report that I somehow dodged this. I did feel a burning in my throat which some anecdotes claim is a common precursor to mucositis. But no serious blistering occurred. I wish I had some explanation as to why I was so lucky. About 75% of BMT patients get mucositis. One nurse speculated that my Asian ethnicity might correlate.
At some point, my immune system was strong enough to justify moving me out of the much-needed single hospital room into a double. I had a roommate, an older man who was starting on an allogenic transplant. I was getting more and more excited at the prospect of actually being able to leave the hospital. When the big day arrived, the doctors joked that I needed to drink 3 Ensure chocolate drinks in order to get out -- I had developed somewhat of a reputation for refusing to drink them.
After getting out of the hospital, I had to stay in the vicinity of the hospital for a week or two. My family, my wife and two sons, stayed in an adjacent room to take care of me. I was still on the low microbial diet, so we needed to stay in a place that had a kitchen in it -- no food from restaurants. This was a tragedy as the south bay has plenty of interesting food to eat. In any case, we stayed in one of those motels that have kitchens in them. I remember watching that dipshit Guy Fieri on the television a lot. I remember going outside and being able to walk a few hundred feet before wanting to sit down again. I remember sleeping through July 4th fireworks in Redwood City.
During this time, I had the central catheter removed at the hospital. Several injections of novocaine or lidocaine were given in the area of the catheter. There was some snipping, and a whole lot of pulling and cajoling of the catheter. The nurse practitioner was unable to get it out on her own, so she called on another NP to help who got the job done. The procedure was painless with the exception of the anesthesia pricks. My mother-in-law kept the catheter in a plastic bag to show my son who was fascinated by that hardware. From that point forward, I could take showers without having to waterproof a catheter with a plastic bag. I felt a bit more like my old self.
After a couple weeks in the South Bay, I went home, to Davis. Thus started recovery which took around 6 months (though the recovery probably could be said to still be a work in progress 18 months out). The only medications I had during this time were Acyclovere to prevent shingles (remember, I had what amounted to a newborn's immune system), and Zantac (not sure why, didn't care). Energy started very low, and I slowly got stronger and stronger. I went back to work about 6 months after 0-day. I did not find it overly difficult to do so.
During recovery, I got pneumenitis which is an inflammation of the lungs that is fairly common after cancer treatment. It made breathing a bit labored and I had a cough. I was hacking up a lot of phlegm. I was put on antibiotics and had to do some oxygen treatments which I could do from home. I think I also did a round of prednisone steroids.
Lots of other interesting things happened to my body post transplant/treatment. My hair initially grew in soft and curly (my hair is typically straight). I have fairly persistent itchy skin, especially where hair grows. Showers dry out my skin like crazy so I have to use lotion afterwards. I have some aches in joints like my knees, knuckles and elbows. I have weak knees -- it is hard for me to go from a kneeling position to standing. On the other hand, I can do things like jog without too much impact on my bones. Also: I used to get canker sores. I am happy to report I have not gotten a canker sore in around 1.5 years.
They tell me I am infertile now-- well... we'll see. I have two children already so there was not much discussion of taking counter-measures such as banking sperm. They tell me I might develop a secondary cancer -- well... we'll see. They tell me my primary cancer might come back -- well... we'll see.
I don't want to die. I don't want to die. I don't want to die. OK?
My mental state:
When I became certain of my cancer diagnosis, I didn't feel much of anything. I don't think the possibility of dying was something I dwelled on. I remember that my plan was that I would fight. This cancer experience wasn't just going to flow through me. It was going to hit me and I would hit it back. I had heard of cancer patients who were said to have fought the disease with every fiber of their being (of course, they were often dead when such words were used). So I decided that was going to be me.
I soon came to learn that the reality of being treated for cancer is different. This "fighting cancer" thing is silly. You don't hit cancer back in any sense. It's mindless biology unresponsive to that sort of stimuli. If you're lucky, the drugs nuke the cancer and you try to survive the onslaught -- the keyword there is "survive". Once you make the decision to be treated you are swept through the treatments and protocols without much opportunity to assert yourself. (footnote: I also do not like the implication that people who die from their cancer or treatment somehow lost their fight.)
But really, I was OK with all this. It was easy for me to slip into passivity. I made myself into a pile of rocks at the beach. The repetition and the routine. Even though I was eroding, I would survive maybe for a long long time. Time doesn't pass by normally when you're a pile of rocks. There is no journey to be had for a pile of rocks. They endure and survive and that's about it.
Of course, this is nonsense as well. Everything is changing all the time. But being human, it is convenient to set up fictions for yourself so you can cope when thing go bad. I liked pretending being constant. Minds are modular -- they are perfectly capable of holding conflicting imagination and reality simultaneously. You can use heuristics and metaphors to survive. There is no point in embracing reality when it is trying to kill you. Embracing reality, as I try to do when I am healthy, really is a luxury. It can be done when basic needs like survival or emotional well-being are taken care of.
So I think I can understand the mentality which leads to belief in things like gods or the afterlife when there is only scant evidence of good quality for their existence. I am a bred in the bone atheist (please don't associate me with neo-atheist jerkwads though) who rejected the idea of god(s) at a pretty early age. And when I was a stupid teenager and into my stupid early adulthood, it was hard for me to understand why someone would want to, well pardon me please, fool themselves into believing things that were false (my past self's words). I think I understand more now. Life is very hard sometimes. Embracing reality is a privilege.
The importance of being insured:
Speaking of privilege, during this whole ordeal I was a member of the Kaiser Permanente medical plan. I received this benefit through my wife's benefits package. I mentioned the cost of pharmaceutical treatments like the monoclonal antibody Rituxan. The stem cell transplant was most likely a six-figure procedure. I never had to realize those costs because I had excellent insurance with an excellent medical provider. If I did not have this kind of coverage, my family would be in financial ruins.
You know that stupid show Breaking Bad? The depiction of financial burden that comes as a result of cancer diagnosis is quite realistic.
As a result of my experience with the health care system, I can safely say that I am all for an expensive, sprawling and universal health care system. Seeing families in the chemo chairs and the BMT ward who have had to compromise on their treatments because of expense is very upsetting -- it is not at all hard to imagine oneself having to deal with that.
Until such a thing happens though, I am asking my friends if they have health insurance. Fortunately, all my friends are really smart so they do. But I am fully prepared to curse them up and down if they decide to decline coverage. Get insured.
The importance of family; the importance of society:
My mom died when I was a teenager and my dad isn't in my life really. I have lots of siblings and half-siblings whom I never talk to. Nonetheless, one of the most important parts of this whole story is my family... By my family, I mean principally my wife Esther, my sons Abie and Yoshi, my mother-in-law Heidi. I'm not going to get sentimental here about them -- I hope they understand how much I value and love them all. However, as a practical matter, having people like this in your life you can depend on when things get hard is really important.
In particular, I needed to be driven around a lot. I needed special food prepared for me. I needed scrips filled. I needed every little thing done for me because I could not do it myself. And I needed it done for many months.
And of course, the existence of treatments for cancers which release me from the prospect of a painful undignified death at 34 to living a fuller life... I think about university researchers, research scientists at pharmaceutical companies, hospitals, doctors, nurses, assistants, modern medical technology that integrates the cutting edge of what we know. I feel grateful to be alive and with cancer during this day and age.
I get a similar feeling of gratitude and awe when I walk through the stacks of a university library. Being a human is cool. Being part of society is amazing.
My identity:
I don't think of myself as a cancer survivor even if I am a survivor of cancer. I generally don't enjoy labelling myself. There is some connotation to "cancer survivor" that I'd rather not have to take on. So I don't. (footnote: I feel similarly about political designations. Instead of thinking of myself as being liberal, I prefer to think that I have liberal leaning beliefs and I would never call myself a Democrat. By being verbose, I feel like I can avoid biases and connotations that happen in human brains and thus purify descriptions of my identity. Also, why you gotta go and label everything man... I'm a human being man. Not a file in your file cabinet man.). On the other hand, it must be said that cancer is now a fairly elemental aspect of my life. My dislike of the label isn't an attempt to deny the experience.
Further, I'm not courageous, brave, a bad ass, anything like that even if people love telling you are all these things. I can put up with it and it doesn't offend me, but I can't integrate it into my own perception of my identity.
Rather, and I think I'm being realistic here, I just got lucky. I got lucky that I had first-rate health insurance. I got lucky that I had access to first-rate health care. I got lucky that I had an incredible family to get me through. And most fundamentally, I got lucky the treatment seemed to work for me as it doesn't for many who go through it.
Okay, so I got unlucky by getting cancer in the first place. And maybe people think such circumstances bring out the best in people. Maybe, but it's not something for me to be proud of. I rolled the dice and did OK. That's all. Do you feel pride when you win at Candyland?
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