Rants and Rambles

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

• discharged

Friday, beginning outpatient activities with a visit to the Anticoagulation Clinic to test my blood clot rate and adjust that medication.

I mentioned a compression stocking (also known as support hose). Supposedly I could just go down to a pharmacy and they’d figure out what I needed. WRONG!

I went to 3; all of which had some on shelves but they had instructions that if the thigh diameter was over (I think) 25″ then these off-the-shelf ones were not to be used. Well my measurement was over 28″ so this wasn’t going to be simple. One of the pharmacists came out to talk to me. He confirmed that nothing they had would fit my purpose and he asked me a couple of other questions. I’d measured myself after visiting the first place but this was a new question. What compression did the Doctor want me to get? I hadn’t a clue.

So I was then directed to a medical supply house; Lebanon had one conveniently close to the hospital. But when I got there, I found they had moved. Once I found the new location (they didn’t have very useful signage on the new building) and waited for them to open (not until 9:00) they informed me they didn’t stock the kind of supply I needed either. But they did have a referral to an orthopedic fitting and supply place. So I went there. Now remembering that “feature” of the leg swelling decreasing when reclined (like overnight while asleep?) and the measurement being important, they only do fittings by appointment and only in the mornings. But here my luck begins to change. They could fit me in about a week from then. No, really, it did change. It was the end of the week and they called me back with an opening from a cancellation that could get me in the following Monday. Before then they called me back again asking about the prescription. Remember, they needed to know how much compression was needed. Well, I called back to the clinic and of course the Doctor who saw me wasn’t there. But they managed to get a different Doctor to look at the charts and send in a prescription (another consulting fee?) so that I could get the stockings when I went for my fitting. Oh, it’s a real deal; I only need it for one leg but they come as a pair. But they’re universal (no angle on the toe) so each fits either leg so I can wash one while wearing the other.

They’re still working on trying to bill the insurance.

One morning around mid-June I looked down at my feet and ankles in the bathtub. They were swollen again. Not too odd; it happens when I’ve spent much time on my feet but not really doing much exercise. My job has me in that predicament often enough, standing in front of a rack of servers or network equipment. I get up and about often enough, usually, from my desktop workstation but not as easily when at a console in an equipment room.

A few days later though and things haven’t changed much. But it looks like it’s only my right foot now. Getting better I guess.

A couple days more and it’s NOT better. While still only my RIGHT foot, it’s not just the right FOOT.  My calf and even to some degree, my knee are swollen. Not as easy to actually make out my kneecap. By the end of June, with some information off the Internet and a little urging from some friends, I decide it’s high time to go see a doctor. It seems swelling of a single limb could indicate a blood clot.

What happens is the blood (fluid) flows with the help of gravity and your pumping heart down into your legs. While standing, the heart with the help of a lot of little valves that stop the back-flow between pulses,  overcome gravity and get the fluids back out of your legs. That is providing something else isn’t obstructing the progress. In that case, the fluids collect between tissues and the leg swells. In cases of lesser obstruction, when reclined or laying with the leg elivated, the flow is easier and the swelling decreases. That’s what I was seeing.

So into the urgent care clinic I went. Blood tests for kidney and liver function and blood count to rule out some general infection came back negative (that’s a good thing; “negative” = positive). An ultra-sound of my leg showed no clots.

So I got the follow-up instructions to get a compression stocking at a local pharmacy and make an appointment to see my regular doctor in a couple of weeks. There I should expect, if there’s no obvious improvement, more tests to check into my pelvic and abdominal regions.

So I SCREWED UP! You see, there’s a very important prerequisite to making an appointment with your regular doctor. You need to HAVE a regular doctor. Mine retired a few years back and I didn’t establish myself with another doctors practice. So it took a month to get in to see one (or should I say, to be seen by one).