Yes, therapy was the idea then, and is now as well.
The illness is back.
One of the dogs died.
I'm back to work.
And I'm pretty much a mess.
For instance, I'm writing this at 3:30 in the morning since I don't sleep much any more. Haven't for four months, and it will probably end up killing me, if I don't go bananas first.
I am going to treat this as a cheaper way to do talk therapy than paying a *professional by the hour. You can tell I don't think much of talk therapy. I should say it's not for me, but it clearly works for others, sometimes.
Delving into the illness:
I have Mantle Cell Lymphoma, a type of non-Hodgkins lymphoma that's fairly rare. I was diagnosed in late 2010, but looking back at my medical records, it seems kinda clear that I had symptoms all the way back to 2004. Obviously it is a slow-growing cancer. It attacks the lymph nodes, causing swelling and thickening. It also can get into bone marrow and the colon.
When I first was diagnosed, I was told two things:
1) There's no point in doing anything until the disease progresses such that doing chemotherapy is not worse than the disease.
2) If diagnosed 10 years earlier, the 5-year survival rate was 5% - a very poor prognosis. Now it would be 80% - a very good prognosis.
As a rare disease - or 'orphan' - it takes some researcher somewhere to prioritize it to make any progress. Thank goodness a group of Scandanavians thought it worthwhile to investigate and come up with a treatment regimen: R-CHOP. Google it for an explanation. Suffice to say it is a beast of a chemo modality.
Weirdly, I decided almost immediately after getting the diagnosis - before I had any idea of prognosis - that this was not going to be a death sentence, or even a 'bad thing'; I meant to do everything I could to make this survivable and easy. What was I thinking?!? I had no reason to assume either that I or anyone could smooth this course, or that it would be survivable.
Anyway, I have a few comorbidities - that is to say, other things wrong. I have a clotting disorder that is inherited (thanks, Dad) for which I must take rat poison (warfarin) for life. I also have diverticulosis (thanks Dad and Mom). Originally the plan was to watch and wait for the cancer to get worse - which could be tracked by blood values such as platelets and hematocrit - before starting treatment.
Every cancer case in every major hospital is presented in a multidisciplinary committee called a Tumor Board (more on that later, ironically I attend those nowadays). This group of oncologists and surgeons decided to move on my case, rather than sit and wait. Lucky me. I still don't know why they took that decision, but I might not be here if they hadn't.
My diverticulosis had flared up as diverticulitis several times over the years. To keep it simple, diverticulosis is a disease of the colon where small pouches, or diverticula, are formed where food particles can get trapped and cause infections (hence the -itis version). The acute phase usually presents with fever, constipation and/or diarrhea, and loss of appetite. I've struggled with my weight my entire adult life. It is safe to say that most of the times I've been able to lose more than five pounds, it has been due to diverticulitis. In the fall of 2010 I was down to 248 (from a high of 309) pounds, and had had several rounds of -itis recently.
In order for chemotherapy (and this iteration is a doozy) to be safe, I had to be as otherwise healthy as possible. Ironically it was a Rheumatologist (very hard to get in to see these days - a very neglected profession!) that I went to with complaints of fibromyalgia-like symptoms who eventually spotted that I had a grotesquely swollen sigmoid colon. He was flabbergasted - thought he was looking at something else and -poof- out popped something like megacolon! on the CT.
So, the Tumor Board thought I needed to have surgery to get the colon under control, then I could start chemo.
I had the surgery in January 2011. It was originally planned to be a robotic-assisted surgery, then a laparoscopy, but needed to be converted to an open colon resection. My surgeon, who does 4 colon resections a day, said I had the worst colon he had ever seen. He also was flummoxed. I had a time bomb waiting to explode on me, giving me bowel perforation and broad sepsis - very dangerous.
Eight inches shorter, my colon now looks almost normal. I have to get colonoscopies more often than most (every 3 - 5 years), but I can live with that. I have a few diverticula still, but nothing has felt like diverticulitis since then.
Side note: doctors often tell patients with diverticulosis not to eat seeds or nuts or popcorn, the reasoning being that these hard or woody bits are more likely to get caught in diverticula and cause the -itis phase. There is NO hard evidence for this (look it up - in respectable journals). Rant done.
So, I had my surgery, everything was supposed to be copacetic - except it wasn't. Given the more emergent nature of my surgery - conversion from robotic to laparoscopic to open - I was put in the Intensive Care Unit as a precaution. Lucky for me. Remember that pesky rat poison I have to take? Well, any time there is a surgical procedure planned - of any size - I have to go off it and go on a bridge medication called enoxaparin (by self-injection. YAY!) until my anticoagulation is re-established. After surgery it's heparin until the warfarin has taken hold again. I don't know what went wrong - but it's probably that surgeons are not good medical managers - but I did not get back to normal with my anticoagulation right away. Or for a long time. I had to be in the ICU until I passed stool on my own (NOT a private room, pretty much a portapotty right where everyone can see - yeesh) to make sure my anastomosis (sutures) held. I could not eat until I passed stool, which I was told would probably be straight blood to start with. So I waited. No food, just IV water. And I waited. And my blood values were all over the place - sometimes too low (clots can form) or too high (I could bleed out). It took a long time to get it in balance. With no food. How is one to have a bowel movement with nothing to prime the pump? That's always been an issue for me - I don't eat, then I don't poop.
Nine days passed in the ICU without success. I recall the evening of the ninth day I was sitting and watching something on Turner Classic Movies (some old Western), wishing I could eat (not even parenteral feeding!) and feeling hotter and hotter. I mentioned this to the nursing staff, who took my temperature and called a code. I was 105 Fahrenheit and climbing fast. I remember them being very upset about all this, but I just wanted to watch my movie (big movie fan that I am). They packed me in ice - and I mean a lot of it, more than 40 ice packs stuffed everywhere around me they could fit - and waited for my temp to come down. I remember thinking it was pleasantly cool. I don't remember much of the movie - I think it ended and some noir piece came on. My fever broke after I melted 40 icepacks. The next day I passed a lot of black, rotted blood. They waited to make sure that wasn't just a fluke (it wasn't) and discharged me on day 11.
I went into the hospital for surgery at 238 - they make sure you don't eat for 36 hours before colon surgery. This was the lightest I had been in - oh, forever. I think I was 23 the last time I was that light. I'm 58 now. I came out of the hospital with a urine catheter and an IV pole to carry around, and got to start very, very slowly on eating. The plan was 10 weeks later, if all was well, I would start chemotherapy. I bottomed out at 220 pounds. The oh-so-estimable-and-otherwise-caca Body Mass Index says I should weight 186 for my height, and that I am only overweight and not obese at 221 pounds. By the way, according to BMI Dwayne "The Rock" Johnson, a man who might as well be a slab of rock muscle, is morbidly obese. It is not a good measure of overall health, and is overly used by the medical community. If I weighed 186 pounds, someone would call an ambulance or try to have me committed as an anorexic. Sorry, my frame is just too big for that!
I started to gain weight as I started being able to eat, which is good. Only I didn't stop gaining weight. Right through the onset of chemo and throughout the chemo period, I gained weight. The impression most people have is that chemotherapy makes you nauseated, and either you vomit a lot or don't have an appetite. My chemo regimen is not particularly mild in that regard, only I never experienced any nausea at all, never vomited. Well, not quite true, but that's later.
Six rounds of chemotherapy - three in-hospital (three day stay each time) and three outpatient. I always had my books, games, movies, etc. to keep me distracted. I liked (or at least ate with gusto) the hospital food.
A bit of a shock when I went into the hospital for chemo for the first time. My wife had helped me research the types of supplements that could help me through chemo. I had glutamate, iron, B2, mushrooms, a product called AveMar (fermented wheat germ extract for keeping tumor size down), ginger and a few other things on board. The hospital took them all away - physically - and locked them up in Security. I protested. Hard. Eventually I got a triumvarate of pharmacists to come and talk to me, such a stink I put up. I think one of them was the head of the Pharmacy service in the hospital. They told me I could keep the glutamate (enough evidence that it did good and did not interact with other drugs) but everything else had to be no-go. They just couldn't know what might interact with my (very harsh) chemo agents, and they weren't going to be responsible for any bad stuff happening. The fact that they were giving me agents that all nursing staff had to wear gowns, three layers of gloves and plastic masks to administer, it was so poisonous, mattered not to them.
One of those agents - doxirubicin - is so toxic that there is a lifetime dose limit for it. Any more and your heart explodes. So I cannot take that particular course of chemo ever again.
At the end of the chemo cycle, when most of my bone marrow was dead (40% of one hip and 60% of the other were infiltrated, which they discovered on VERY painful bone punch biopsies), they did a process called apheresis. That's where you're given a drug called Nupagen to massively accelerate the production of stem cells, then they take all your blood out, comb out the stem cells and freeze them, and them put the blood back. By this point I was pretty anemic, worn down, hairless (yes, that stereotype is mostly true, although some don't lose their hair) and cranky, finally. No more easy course, but still no nausea and vomiting. The worst up until then had been getting a port put in (rather than starting a new IV every time chemo is needed) to my chest, and taking care of it so that it neither clots nor gets infected.
The reason they spun up so many stem cells and took them out was that I was to have autologous bone marrow transplant. Many people cannot do this, and are dependent on finding a donor with the right HLA types (as many matches as possible) to do bone marrow transplant. Rejection rates are high. I met one fellow who was on his twelfth bone marrow transplant from donors - all his family (luckily he has a very, very large extended family). For reasons not clear to me I was thought to be my own best donor - whether it was my rare blood type (AB+) or my clotting disorder, I don't know.
Anyway, my stem cells frozen and waiting, they had to kill of what remained of my bone marrow (and my immune system, by the way) to make way for giving me my own back. The stem cells would then go into hyper-mode making new marrow. So one last megadose of rituximab and I was 'clean'. This is where I finally succumbed to the vomit monster. I was sitting and talking to a friend, feeling fine, and within the space of 20 seconds I excused myself and lost my lunch, then back to normal, easy peasy. So much for the vomit monster.
I was to be in the hospital for a month, in a HEPA-filtered room, as I had no immune system left. A week after the final chemo, I would get my stem cells back and wait while they grew. I would be allowed to go home when my platelet levels reached something approaching normal. Mostly I felt fine. During other hospital stays I had violated the 'rules' and snuck outside to go walking in the large semi-wilderness park across the street. That wouldn't do this time, as just about anything I picked up over there could kill me. My wife was insistent that I get enough exercise, and the staff encouraged it as well, so I got my IV pole and walked every day, at least a mile around the corridors (22 1/2 circuits of the ward!). I ate all the food everyone brought me, and put the overflow in the unit fridge provided for the patients. I gained a lot of weight, mostly because I was eating the hospital food, too. Everyone wanted to show their support through food, so I ate great. I couldn't manage to give the excess away to my fellow bone marrow transplant patients, though. Most of them couldn't stomach what the hospital gave them, much less anything extra.
When I came into the ward in early August, not one of my fellow 20+ bone marrow transplant patients exercised - at all. The staff told me that though it was encouraged, most never did it. By the time I left four weeks later, at least 8 others were regularly walking, some even as much as I did. Small wonders.
The only bad part of my whole treatment regimen came when they put the stem cells taken from me back into me via IV. The agent used to keep the cells from bursting at super-cold temps - Dimethyl Sulfoxide, or DMSO - was apparently something I don't tolerate well. When it came on board, I started to black out, had a feeling like there was a gorilla on my chest, and that gorilla was also stomping up and down on my grave. In short, it was an awful feeling, like I was dying. It only lasted about five minutes, but it was the scariest five minutes of my life. Things had been going so well up until that point, and there were so many people there for the 'event', including family, that I said nothing at the time, just gritted through it. In retrospect that was a very, very bad idea. I could have been having a truly bad event and could have lost the capacity to tell anyone about it. But I pulled through.
One other event happened a few weeks before during my final regular chemo treatment. At this point every round of chemo was accompanied with a blood transfusion, as I was getting more and more anemic (intentionally). One of the units of FFP, or fresh-frozen plasma, induced anaphylaxis in me. They even called in the unit-wide emergency team, full code, and it took a while to stabilize me. I never doubted it was something minor enough that I would get through, but the very impressive team definitely handled it like champs. I speculated afterwards that the donor of that plasma must have just had a large pasta meal with marinara - I am very allergic to tomatoes!
So I made it through treatment, and had gained weight throughout, and was mostly embarrassed by how easy a course I had. The doctors were impressed by the ease of it as well - remember, that's nasty, nasty chemo. We just had to hope that the chemo killed off all the cancer, and the stem cells I contributed to myself had no cancerous ones among them.
I truly believe attitude matters tremendously in the face of dire diagnoses and treatments. I never doubted that I would be fine throughout the process. Many of the people I was hospitalized with and took chemotherapy treatments with looked miserable, and no doubt were miserable. I don't know how much their particular versions of cancer and chemo had to do with that, but I do think a positive attitude could have made it seem much better for them. I'm hoping that carries through the second time for me.
Most of my life I've been plagued with cold after cold, flu after flu. When I was 10 years old the doc looked at my hopelessly swollen tonsils and said that he'd yank them when they stopped swelling. They never did.
In the fall of 2015 I had been getting worse and worse with my breathing habits while sleeping. I had started on CPAP (assisted breathing at night) back in 2005. I was looking to get off CPAP, or at least reduce the pressure needed to keep my airways open. Naturally I thought of my swollen tonsils and thought if I could yank them out, my airway would be less crowded and I could breathe easier. So I scheduled a tonsillectomy.
Worst. Idea. Ever. First, since my uvula (that thingy hanging down in the back of your mouth) had become elongated and hardened, that had to be yanked as well. It hurt like the dickens afterwards, and eating was tricky. I lost weight again, but not too much. I always seem to find a way to eat. I just had to avoid cherries - they made my throat sting something awful. The nice doctor gave me liquid oxycodone to take as well. And I took it. A lot of it. I had had a problem before with opioids. I had back surgery in 2001 which did not go well, and had chronic low back pain that was pretty intractable. I had an oxycodone prescription for taking as needed, and I almost never took them - only when pain was 'breakthrough' and nothing else would help. Then in 2014 my steadily degenerating cervical disks led to radiculopathy - shooting pains and numbness down my right arm, such that no position could be reached where I wasn't in agony. Oxy was the only thing that let me sleep. I took a lot of it. When I told my doctors how much I was taking, they immediately put me on methadone. Methadone is another, less powerful opioid used to get heroin addicts unaddicted. Imagine my shame. After a few weeks of very bad withdrawal symptoms I was able to stop methadone altogether. Getting off Diet Pepsi was harder, but I wouldn't trivialize opioid addiction in the slightest - it was bad. But something they put in colas is worse!
So here I am chugging Oxy again, dealing with complications like stitches coming apart and bleeding so back I'm in the ER (and dealing with being of my rat poison again, injecting myself in the stomach twice daily). In the midst of this the pathology report comes back on my tonsils: the overly-swollen left one is positive for lymphoma. Huh. So we didn't get it all. Adenoids and tonsils are weird lymph glands that are essential for immune function but don't otherwise interact with the rest of the body. Maybe it was just a holdout sequestered pocket, and it didn't mean I had a recurrence of cancer.
So, fingers crossed, I get on with it. Only now I start noticing slightly swollen lymph nodes, here and there. The worst is on the left side of my neck, right opposite where the cancerous tonsil was. I tell the oncologist, and my blood panels are normal, so they're not worried. The lymph nodes get bigger, more numerous. The one on my left neck starts messing with my tongue and salivary glands, and hurts to boot. I have a lump on my right forearm that hurts, so I have it removed. It turns out to by a golf-ball-sized angiolipoma - a fatty ball that has its own blood supply. Not a tumor, but tumor-like. Leaves a big hole in my arm and an ugly scar. Fine, nothing to worry about. Only the gland in my neck is getting worse. CT, MRI show multiple swollen glands, some deep, some superficial. We decide to take out the worst one and see what it's made of. July 2018 it's out, and the pathology comes back: active cancer, the same as before. I never had super-swollen lymph nodes before, so this is new.
Back when I was first 'cured' - or sent into remission - I asked about what happens if the cancer comes back. In those days, it was a second, almost as bad, set of chemo with some steroids as well. Over the course of the last few years the answer became 'just take a pill'. I've looked into the options, and none of them involve 'just taking a pill' - but it is true that the therapy has come a long way, and might not be invasive. I will find out in a few weeks when I see my oncologist again.
In the meantime, I don't sleep much. The tonsillectomy actually led to an increase in the pressures I need for CPAP. That isn't even working now - I wake up gasping for breath all the time. Sometimes it feels like I forget to breathe, and I have to take a huge breath to get things going again. In the depths of my oxycodone addiction, I came to realize that opioids don't take pain away, they just put you in a place where the pain doesn't touch you - you just don't give a damn. This is the attraction of the drug, I think, for people who are hurting - emotionally and physically. Numbness. Only I felt then that I would sometimes forget to breathe, just like now. Seems to me this is what causes opioid deaths - a shutdown of the autonomic (involuntary) responses, like breathing.
Someone pointed out that this sounds like (in the absence of actual opioids) a panic reaction. I may be have mini-panic attacks all the time. Considering I'm on an SNRI (serotonin-norepinephrine reuptake inhibitor) this seems far-fetched, but I have to consider it. I may be scaring myself half to death. It's true I don't have the same cavalier (or positive) attitude this time around as before, at least not before I find out what the treatment regimen is going to be like this time. Being nearly 300 pounds again surely doesn't help with breathing problems. Having a sister and mother with COPD doesn't make me any less anxious, I can tell you.
So, therapy. I write because I don't know what else to do. I am an otherwise healthy morbidly obese middle-aged man with cancer. If you don't count the clotting disorder, gout, degenerative joint disease in every joint possible, chronic depression, really bad gum disease and diverticulosis.
Funny thing: when they took out my colon, they did routine pathology and it came back as having the same mantle cell lymphoma - inside. The oncologists dismissed this as not possible or relevant, but in the intervening years it has been shown that there is a significant percentage of cases of mantle cell that involve the colon as well. My surgeon got my medical record updated to reflect 'colon cancer', which of course is not really correct: I do not have a primary cancer of the colon. But it does make me wonder what else they don't know about my type of lymphoma yet. Back to the Scandanavians?
