Wow, I’ve been neglecting this blog. Sorry. I wish I had good reasons, even one good reason would be nice. It’s almost the end of my sixth cycle and my last entry was shortly after my fourth! Not much difference, cycle to cycle except the side effects seem to continue getting more intense. Nothing unpredicted, not sooner or longer, just “more”. I wonder sometimes whether it’s really getting worse or am I just more sensitive to it? Is it my anticipation that’s amplifying it? Does it matter?
The scan
I’d been wondering how they’d decide when I’d had enough. They scheduled a new CAT scan just before my sixth infusion. The test results would be back along with my periodic blood tests in time for my doctor’s appointment that I have the day before each chemo session. The idea with each blood test is to confirm that I’ve recovered well from the previous dose of the chemicals and that I’m ready for the next. If not, the dose can be adjusted.
At that time, the sixth treatment was supposed to be my “last” one. The CAT scan results changed that. There was good progress made, but not enough. I’m now scheduled for two more, with number 7 happening in a few days.
Christmas?
Since there hasn’t been any significant change in the way or timing of my body’s reaction to each treatment, I’m not very happy about this next cycle. Plans have been to spend the holidays with my extended “family” up here. I hope I’m up to it; December 25 will be right at the peak (or really depth) of the discomfort from the chemo. I expect that I won’t be very good company.
or is that few and far between?
Wow, it’s more than a week since the last session, my 4th. Filling in from my third, the sharp pains subsided as expected about 7 days after the infusion (after having lasted about 4 days again). But they were replaced by not only the earlier weakness near joints like my knees, but not-quite-sharp pain near the joints as well. When I flexed muscles the tendons at the joints hurt; the more force (like lifting rather than just moving) the greater the pain. Walking wasn’t too bad as it was usually just keeping my feet under me. Climbing stairs was worse. After about 2 weeks from the infusion date things were back to dull aches and the problem with my hands and, to some extent, feet.
Fourth cycle
Now, into the 4th cycle, things are getting worse. The sharp pains haven’t changed. The weakness at joints as well as the tendon pain is now in my arms and hands. Mostly the forearm, both wrist and elbow are having the problem. For a while it hurt to move my arms at all; the weight of my hands pulled the tendons. If I was trying to grip something, I might be able to hold it tight enough but lifting it would hurt enough I found myself dropping things in reaction. As the effects tapered off and the pain level lowered, I could lift things like a glass to my mouth but the odd movement to tilt it would hurt and require both hands to share the load. And oddly, the pain pills didn’t help that type of pain much, at least at the dosage level I’m prescribed.
Today there have been only a few motions that pulled muscles and tendons that were painful. Maybe tomorrow will be good enough I can get out for a break. With the extended leg pains I’ve not even been up the stairs to the office where my PC is. With the arm pain I’d not do well on the keyboard any way, so I’m short on work hours as well as any of my network means of social contacts too.
It’s a few days after my third cycle. About the same as the last one. Hand numbness continues and I was told a few days ago that my palms don’t feel like regular skin to someone elses touch either. Hadn’t thought about that since my own sense of touch is so off. Feet are getting that way too (numbness that is).
Chemo?
So I was asked what “chemo” actually is. You hear a lot more about radiation with cancer. Well, since lymphoma isn’t a hard tumor cancer but involved blood cells (at least mine does; the B-cells) you can’t aim at it. It just seems to collect in the lymph nodes or other organs. That’s why it can’t just be cut out either. So they use chemicals that attack the cells.
Here’s what I’m getting…
R-CVP
R = Rituximab,
… a monoclonal antibody. A type of protein made in the laboratory that can locate and bind to substances in the body, including tumor cells. There are many kinds of monoclonal antibodies. Each monoclonal antibody is made to find one substance.
I get this in IV through the port. If I remember right, it’s been mixed in a 1 liter bag of D5W (water & 5% dextrose). This is one of those “treatments” I mentioned that can’t tell the difference between good and bad cells and relies on the replacement of the lost good cells. But it does at least target the specific type of cell.
C = Cyclophosphamide,
… is used to treat various types of cancer and some autoimmune disorders. The main use of cyclophosphamide is together with other chemotherapy agents in the treatment of lymphomas, some forms of leukemia and some solid tumors. It is a chemotherapy drug that works by slowing or stopping cell growth. It is a “prodrug”; it is converted in the liver to active forms that have chemotherapeutic activity.
This is another IV “bag” but I don’t remember which one it was; not a big as the Rituximab though.
V = Vincristine,
… arrests cell division (mitosis) and affects all rapidly dividing cell types including cancer cells, but also intestinal epithelium and bone marrow.
This is the one with the digestive system side effects. I’m not suffering much from this though they’ve given me another drug for the nausea if I need it. Peripheral neuropathy, the hand and foot numbness, is one of it’s main side effects.
P = Prednisone,
… is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It is used to treat certain inflammatory diseases and (at higher doses) cancers, but has significant adverse effects. Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid.
This is a lot of pills daily for 5 days (5 each morning). Among it’s side effects are “mental confusion” and severe joint pain. Most everything else in the list I’m doing OK with so far.
or at least a cycle.
I’m in the last few days of the cycle, and the last week sees to have been fairly good. I’ve been to work (as in at the office rather than telecommuting) a number of days and though very tired, ended up feeling like I’d accomplished my goals for those days. That’s an important factor in a couple of ways. First it’s good to set reasonable goals. Hey, “they” are always telling us that, right? But when there are new limits, like easily being fatigued, this is the first way to avoid trouble. Didn’t Dirty Harry say something about knowing your limits? And second, with the number of negative things likely to be hitting home from time to time through this, having some successes as attitude boosts is significant even if the individual accomplishments aren’t. I’ve got a lot of support from my co-workers too, so it’s nice to be there.
Worst part of it getting close to the end of the cycle is trying to not think too much about it starting over again.
Yakov Smirnoff
Russian reversal or “In Soviet Russia” is a type of joke originated by Smirnoff, and is an example of antimetabole. The general form of the “In Soviet Russia” joke is that the subject and objects of a statement are reversed, and “In (Soviet) Russia”, or something equivalent, is added. For example:
- In America, you catch a cold.
- In Russia, cold catches you.
To add insult to injury, I woke up Thursday morning to find that I had no water. With all that’s going on with my chemo for the lymphoma, from flushing and washing to drinking; water is something that is in heavy demand around here.
OK, call the city and… NOPE, I’m on a well. Actually it’s even a little more complicated than that. I have a well; it pumps into a storage tank of about 2200 gallons. It has a pump that then pumps the water to the house.
Now I have pressure drops from time to time; there’s a “whole house” filter that periodically gets clogged up. That’s a gradual thing that can be confirmed with the turn of the bypass valve (just for a test, I don’t want the sediment getting into the plumbing if it can be avoided). Made no difference this time.
Then there’s the pressure switch on the pump at the tank. If there’s been a power outage long enough for the pressure to bleed off that switch needs to be manually activated to get the pump to bring the line back up to normal pressure. That didn’t help either. But I could hear the pump in the tank. Loudly. Too loud in fact. So I made a phone call to the company that installed the tank when I bought the house and they asked the obvious question; “is the tank empty?” So I took off the access cover and it sure was! They told me they’d try to get someone out to check things but might not make it until Friday. In the meantime I could call a couple of companies that deliver water, and by refilling the tank I’d be good for a while. So a couple of calls and messages left and I’m set to wait impatiently while an over-active imagination ran wild with fears of a dry well and paying for water by the stainless steel tank truck load.
As bad as this could have been, it really worked out fairly well (sorry, I’ve caught myself with that pun a few times since this started).
- The water delivery happened that afternoon. If I’d missed that window, maybe not until next week.
- The water system company showed up mid-day and checked the wiring. Confirmed the problem, which looked like a dead pump motor, was below the well head.
- They could return with their boom truck and pull the pump that afternoon.
- As they pulled the pipes out, it dumped water so the well wasn’t dry.
- The wires were good.
- They had a pump the matching size.
By 6:00 the biggest problem (other than eventually having to pay off the bill) was having to go buy some new filters since a lot of sediment was stirred up, and I had just used my last one last month. The only, open, local store that carried the filters hadn’t had them on their shelf the last 3 times I’d looked for them. But I tried anyway and they had a number in stock (I bought 8 while I was at it).
So today the house is just a little “newer” than before.
Cancer or tumors in general, cancerous or not, have been in evidence for ages. So have some pretty “advanced” treatments. While we may attribute it to an opening of a window through which the evil spirits escaped, it certainly looks like early surgeons opened skulls and removed brain tumors. I’ve heard that there are even fairly detailed accounts describing operations for the removal of problematic growths well into B.C. For some time the way we’ve dealt with cancers amounted to a simple two-pronged attack. Try to hack away at an unwanted, growing mass of tissue faster than it grows back while avoiding any tissue we can identify as necessary; and numb the increasing pain with the strongest herbs and medicines we can find. Enter the laudanum “cocktail”, the broad spectrum of opium (the seed resin) derived alkaloids dissolved in alcohol. You can’t get much more “herbal medicine” than that.
Now, the nature of cancer is odd to be sure and I’m going to over-simplify with out a doubt. it’s a growth of tissue that simply doesn’t belong where it is. It doesn’t belong in your body; it isn’t part of you or yours. The genetics are wrong. It used to be yours but the cells that make up that tissue are no longer the kind of cell they started as and they no longer perform the function they were intended to perform. At best they are just getting in the way and doing so at a growth rate that is causing problems for the cells they are displacing. At worst they are actually actively (and if you could attribute purpose, you might even say intentionally) doing harm attacking other cells. And this is just for a beginning. As if they are a rebellious rabble, they can seem to convince other peaceful hardworking tissues of completely different organs to join their cause. It’s not too difficult to accept the idea of a lung cancer spreading to “infect” other lung cells; but it spreads to other organs. And it’s not the same as a virus or bacteria which isn’t really changing but just growing into more cells. Cancer cells used to be each of those different types of tissue cells. I guess this is why cancers are such a medical challenge.
Now enter modern chemo and radiation treatments. While there’s still a great deal of hacking involved (but thankfully more understanding of what’s being hacked and increasing skill at doing so) in removing some cancers, they’ve added new treatments to the process. Both chemo and radiation therapy apply a similar theory to the intervention. Rather than treat “it” as a lump and try to remove it, not being sure you’ve got it all (meaning “them” all since we’re talking about cells) and compensating by removing “extra”. Kill them where they are. Kill them cell by cell.
But we’ve yet to be able to be that selective. Advances in chemo formulations are getting better but have limits when it comes to differentiating between non-cancerous and cancerous cells. Radiation treatments are improving, with things like precise placements of radioactive material or accurate aiming of narrower beams so that the treatment is restricted to smaller cancerous tissue areas. There’s a way to go yet though, before treatments can target only the “broken” cells. So the process still seems a bit backward.
More than the cancerous cells are eliminated; cut out, killed in place, whatever. Then additional treatment compensates for the direct reaction to that such as pain, nausea or anemia. And additional treatment improves the patients over-all condition to recover from the effects of the loss of the collateral damage such as the growth of new good cells. Add to this the fact that there are often other problems indirectly the result of the cancer growth, like what happens to an organ pinched or displaced by a tumor and this all gets VERY COMPLICATED.
It’s a couple of days into the second cycle of chemo. I’m feeling the effects again and am reminded of the things I didn’t get around to posting in a timely manner last cycle. It will probably be the same again in a couple of weeks and again a few weeks later.
so…
For the most part, what’s bothering me are the same things that have hurt before; I mean before the lymphoma and chemo. I’ve got joints that ache. Knee, hip and especially my hands. With each cycle of chemo, those return, but more intense. I can’t say whether they’re getting worse. pain’s a strange thing. It can catch me off guard and feel like nothing I’ve ever experienced; I could swear something is exploding or being ripped off. Or I could just swear. A lot. I’ve got TMJ; that jaw/joint thing that makes your jaw lock or snap. It’s usually not bad. But a couple of days after a chemo session and I start getting a sharp stab into both sides like an ice pick. Any motion, especially with pressure like biting, and the pain joins around the back of my head and over the roof of my mouth through my sinuses. Even moving my tongue does the same thing, so I can’t even swallow liquids. The pain meds work but don’t last very long, and it’s especially bad over night when they wear off while I’m asleep. Kind of takes the humor out of that joke about the nurse waking the patient for his pain medication so he can sleep. better to re-up the dose before it stops working and miss a little sleep than wake from the pain and suffer a half hour or more while it starts to take effect again. That’s what those mornings are like. Gladly, that part only lasts 2 or 3 days. By now, 6 days after the infusion, I’m pretty much back off the pain killers.
I said pain’s a strange thing. A lot like the noises your car makes when you try to describe it to a mechanic. You go to a doctor or the hospital, especially triage at an urgent care or emergency room; “how bad is the pain?” They use a 1-10 scale and little faces and ask you to tell them how bad it is. OK, zero is no pain; so why am I here? 10, like childbirth (like I’d know); for the mother or the child? Then there’s the type of pain. Sharp? Dull? Searing like burning or electrical? Like a stab; with a knife or an ice pick (I used that one). I’ve never been stabbed deeply with anything other than a needle. Each time (except the accident with the sewing machine) on purpose my a “medical professional” and with a statement of “…just a slight prick”. One time I’m told, as a small child, it took two people other than the doctor to hold me and I almost broke the doctor’s arm. One time, more recently, I almost came off the bed (I think I mentioned that one already). So what does a “stab” feel like? No thank you, I don’t need to expand my empirical understanding further.
I’m really impressed. After a few too many times with blood tests and the like (past years, not this current experience) I like many people, grew to dislike needles. I’ve grown to tolerate them better but I’m sure I could never in my imagination ever become an injection drug user. I’ve had a few IVs too, with mixed reaction mostly on the low to very low end of the scale. The most recent one at the hospital in prep for some of the tests were the worst. Two failed attempts to veins in my hand. I started afraid and it just got worse as my autonomic (is thet the right word) responses ranged from fetal position while trying to keep my hand and arm relaxed (HA!) to my vein just closing up so the needle (not really a needle but I’m not sire of the right term) couldn’t be threaded in far enough. Third one in the other arm was much better (well, at least they got it done).
But soon they “installed” something they call a “port”. This is probably one of the little marvels of medicine that is now pretty routine and seemingly insignificant but i think that as a single device or procedure, it’s had to have accumulated a great deal of “points” for the pain and discomfort it’s avoided for so many patients. This little device consists of two parts. One portion is the port itself; imagine the top of one of those bottles the injected meds are in that they draw from to fill the hypo. That gets placed under the skin, usually near the collar bone, with the injectable part outward of course. The other part is the tube, a catheter, which is threaded into and through the vein to near the heart. Sounds kind of gross and it looks a bit odd too as the port leaves a fairly obvious lump, but it’s supposed to be easy for them to find. What this means is, not assaulting a poor vein over and over when you are going to need a number of IVs and/or blood draws for tests over an extended period of time; that can be rough on the veins not to mention emotions if, like my earlier experience, it takes three times to get one right. Once the port is in, they “access” it with a HUGE (OK, it only looks bad) needle with a short section of IV tube attached with a couple of fittings. hey numbed the skin above the port so I barely felt it, and it only had to go through the skin. No need to take as careful aim as when worrying about missing or going through the other side of a vein. There was even a guide or jig that lines up with three bumps that can be felt through the skin (look carefully and they can be seen in the x-ray) to center the needle. This all tapes down under a bandage. They test with a blood “return” and flush it after blood draws and the IV infusions. They can change the bags to switch between the drugs they’re administrating; “push” an injection of a smaller amount of a medication from a hypo (injected into the line rather than directly into you) or stop and draw blood for more tests. You never feel the changes. This, I’ve no doubt, is making a big difference in how tolerable this is all going to be.
- Port to the right, catheter to the left
Not funny.
OK. I thought this was such a great idea and started blogging. It took too long to figure this out and set it up. I’m way behind and had too much catching up to do before I even started. I’m even beginning to forget some of the things I wanted to say and include and there’s no way there will be any continuity now either. But I’m going to give it a try and along with some updates, do some back-fill along the way.
It’s a couple of days after my second round (they call it “cycle” I guess) of chemo. Maybe cycle is a little less harsh than “round”. If you think of it as a boxing match, “round” may be just what it could feel like; but so far my case is not too bad. It really is more of a “cycle” with ups and downs but not really too dramatic in the down stroke. But then the highs aren’t anything to sing about either.
All the people I’ve been dealing with (maybe that’s a pretty impersonal term for something so personal, I’ll think of something better) have been really good. Supportive and kind are a bit short on the description scale; loving is closer but there’s a depth to their expression that comes out in even the way they look at me while saying or doing what are probably very routine things. OK, maybe not everyone comes across that strong, but most of them do. And they’re so sincere; the smiles are real and they listen! And they must be doing this all day long with so many people in situations similar to mine. These nurses, CNAs and everyone must have such strength of personality. Bless you all!
Just had to break the blog-block. I’ll get to another post in a little bit, maybe with something more specific to say.
This didn’t seem to be getting off to a good start. I’m not sure I’m qualified to say what constitutes a “good start” in something like this but a delay of a month before taking the next diagnostic step didn’t seem too good of a plan. But there I was. I had my band-aide and my next appointment.
With the slow start, the days that followed were such a radical difference that they were almost overwhelming. With paperwork filled out containing medical history and medications list, the first appointment came on a Monday. Another blood test (this one for prostrate cancer). By Wednesday those results were in (negative) and an appointment was set for Friday for a CT scan (I had to go by and pick up a “contrast media” Thursday). This stuff (they said it was “berry” flavored) was bad but not nearly as unpalatable as what I had to swallow for my colonoscopy. They weren’t kidding that it was better cold! OK, CT done and another visit to my primary provider (Monday). That gets me an appointment with a surgeon/vascular specialist (Tuesday) and a biopsy (Wednesday). Back to the vascular specialist (Thursday), who based on preliminaries and the CT scan, calls the oncology consultants to get me admitted the following Monday. Hey, apart from weekends (and there was a phone call or two even then) that’s only three days without some kind of test or appointment between starting with a new primary physician and putting on my hospital gown.
The following week went just as fast.
Monday
- admitted
- IV line in place
- thorax/neck CT scan for any additional lymphomas
- Port-a-cath placed
- heart ultrasound
Tuesday
- stent placed in right kidney
- low test dose of chemo
Wednesday
- ultrasound right leg
- full chemo
Thursday
Friday, beginning outpatient activities with a visit to the Anticoagulation Clinic to test my blood clot rate and adjust that medication.