I have a mass on my right kidney, which was found somewhat accidentally during the diagnostic work done for the lymphoma in my jaw. That mass was assumed to be a typical renal cell carcinoma nodule. Treatment of renal cell carcinoma is usually pretty straightforward; partial or complete nephrectomy (removal of kidney tissue.) With that assumption, I went into the first meeting today with my urologist, Dr. Hofer, optimistic that being cancer free was just around the corner. Sure, getting there involved surgery, most likely a robotic-assisted laparoscopic partial nephrectomy, but compared to the chemotherapy and radiation therapy I’ve already been through, that should be a breeze. Relatively speaking, of course.
But, again the words “unusual” and “different” and “interesting” came up during the appointment. Dr. Hofer said my case would make a good trick question in a urologists’ exam. The curve ball that made him question the off-the-cuff diagnosis of renal cell carcinoma is the fact that I’ve already been treated for lymphoma, combined with what he saw in the PET scan; the mass just didn’t look like a typical renal cell carcinoma. He’s been doing this stuff for 20-plus years, and has seen a fair number of them, so he ought to know what they look like. He also said that lymphoma will occasionally grow on the kidney, and is easily mistaken for something else. But unlike renal cell carcinoma which is usually a contiguous mass and easily removed, lymphoma is more diffuse; surgical removal is less effective because the tumor’s boundaries aren’t well defined, and it often metastasizes to other organs.
So, given my history and the physical appearance of this particular mass, Dr. Hofer suggested performing a biopsy of the mass before diving in and cutting out a chunk of the kidney. If the biopsy shows that it is indeed renal cell carcinoma, then I’ll go back in for the partial nephrectomy. But if it turns out to be lymphoma, I will still have both my kidneys intact, and will go back to Dr. Bleeker and Sanford Oncology for more treatment. I’m not looking forward to that, but…
The biopsy will be done by one of the Sanford Radiology docs; they’ll use an ultrasound to guide a probe to the proper spot on my kidney to get a sample of the mass. Much less invasive than laparoscopic surgery, but will still require an overnight stay at the hospital. We don’t have a date just yet; should find that out tomorrow.
It’s a bit of a disappointment; here I thought I was a surgical procedure away from being done with this stuff, but now we’re faced with more questions and more diagnostics to try & get some answers.
Wow; thought I hit publish on this one already. Now it’s old news (so I guess that would be “olds” instead of “news”?) I got some really good news from Sanford Oncology following the PET scan two weeks ago; the lymphoma in my jaw is gone!
I’m still not out of the woods, but it’s definitely a step in the right direction. There is still the mass in my kidney to be dealt with, so I have an appointment with a urologist in a couple of weeks to talk about the options for getting that removed (more on that when I know more.)
As for the lymphoma, since things are clear, I only need to return to the oncologist in three months for a checkup, then go back for another PET scan in six months.
It’s been a while since my last update, so I suppose I’m way overdue for another. Actually, this post was started weeks ago, but it never seems quite finished, and instead of just finishing it, I find myself going back to it again & again and revising big chunks of it. Even the post title has probably changed a half-dozen times… Probably not the most efficient way to get the job done, but… It may have ended up a little on the wordy side too; just a warning. Good thing I don’t charge by the hour or by the word.
My last post ended with the results of my second PET scan in late June. While the procedure was a little rough, it yielded some good news; we had gained some serious ground on the cancer in my jaw, and we were ready to roll into the next phase of treatment, radiation therapy. Those treatments weren’t much more fun than the last PET scan, and even now, seven weeks out from my last treatment, I’m still feeling the lingering side-effects. The positive side of this in between time is that I haven’t even seen the inside of a hospital, clinic or infusion center since July 25 (happy dance!) My next appointment is for blood work and a third PET scan on September 18, followed by a visit with my oncologist to go over the results. It’s been really good to not be picked on for a while after about 17 weeks of being poked, prodded, gouged, scanned, pumped full of toxins and and being irradiated by a linear accelerator. Recovery from the radiation seems to be much slower, but I’m finally starting to feel closer to normal (whatever that is; I think I forgot.)
To recap what has happened since that last scan… (more…)
Another very tardy update; the last few weeks have been, um… eventful.
Four weeks ago I had my first sit-down with Dr. McGraw, the radiation oncologist. There was a bit of a snafu in the scheduling, as he would’ve preferred to have seen me after my PET scan (which was done the following Thursday morning; more on that later) so he didn’t have a full game plan for treatment. He also said that he would be passing my case over to one of his partners because he was being deployed with the Air Guard and would be gone for the next three months. He did however take the time to explain things pretty well, so Yvonne & I were thankful for that. Knowing what he did of my case (two things you don’t want to hear from a doc; “I’ve been reading up on your case; it’s very interesting.” and “Wow, I’ve never seen [i]that[/i] before!”) he thought that a course of 18 daily radiation treatments over a span of three weeks ought to do the trick to completely eradicate the cancer from my jaw.
The treatments would be aimed at my jaw, and should only affect that immediate area; the side effects didn’t sound like much fun (and haven’t been) but he didn’t think it would interfere much with life & work (they haven’t, much) and should be effective. The daily thing was kind of a surprise, but he explained that doing smaller doses daily is far easier on the body than larger doses spaced further apart. I think I can accept that; I won’t enjoy it, but that pretty much goes without saying.
Following the appointment that morning I was also fitted with my Hannibal mask. They don’t call it that, but I will because that’s the first thing that came to mind when I saw it; it’s a form-fitted mask that helps to keep my head stationary during the radiation treatments, and also allows the techs to mark it up with reference points so they can be more consistent from one treatment to the next (which is better than marking me!) It’s made of a plastic mesh that starts out flat and becomes pliable when warmed up. The techs draped the warmed mesh over my face, then fitted it to a u-shaped plate that clamps to a hard plastic headrest. This isn’t mine, but looks an awful lot like it:
Since the tumor is on my lower jaw, they also want to keep my mouth from moving, so I was fitted with a mouthpiece, which is similar to a football bite-guard except it has a flat plastic piece in place of the part that would normally form fit around the lower teeth. After the initial fitting, the bite-guard was attached to the mask; the two combined, with the mask clamped onto the headrest, with me in a supine position on the table made for an extremely unpleasant confined feeling.
They did a quick CT scan of my head that first Tuesday, and in the few minutes that it took I nearly gagged on the stupid mouth guard. The bite guard obstructs my tongue’s movement, and that combined with the way the mask fits around the bottom of my chin made swallowing really difficult. And that combined with laying flat on my back on the table made for a few moments of near panic. I made it through the CT scan, and was so glad to finally be released from the thing I failed to say anything about that. Later I assumed that at some point we would take some time to get the mask & bite guard to fit better… Wrong assumption.
During our visit Dr. McGraw mentioned that he wanted to use that mask for my second PET scan in order to get more accurate results; I was still hoping that there might be some adjusting we could do with it, but when the nurse trotted that thing out on Thursday morning it was pretty clear that wasn’t happening. They got me ready and slapped that puppy over my face & told me to relax, the test would take 20 to 25 minutes. That’s when I nearly lost it.
I was to have nothing but water for six hours before the PET scan, and part of the prep involves drinking a thick sugary goop. That made for a bit of sticky gunk in the back of my throat that was hard to swallow. Add to that the bite guard in my mouth and the part of the mask wrapping under my chin and it was extremely hard to swallow. I’ve never considered myself to be claustrophobic, but I’d never been this restricted before (having my arms strapped to my sides didn’t help that either.) I knew I wouldn’t be able to make it five minutes, much less twenty-five minutes, so I grunted and kicked and did whatever I could to communicate to the nurse that it wasn’t gonna fly… She pulled the mask off and I nearly hyperventilated, so happy to be able to breathe again!
I explained the difficulty I was having, so she went to ask about adjusting the thing; she came back saying the word was ‘no’ on adjusting, but the doc relented on the mouth guard, and she pulled it off of the mask. The mask was still somewhat restrictive, what with the part that wrapped under the chin, but I somehow made it through the procedure by praying, reciting what I could of the 23rd Psalm (sure felt like the valley of the shadow of death!) and counting. The PET scan operates by making scans of small sections of the body, as if it’s a great big meat slicer (that thankfully doesn’t actually cut anything.) From the counting I determined that it took around three minutes for it to scan a section of my body; then the table I was on would move forward six inches or so, then it would scan the next section of my body. I lost track of how many times it moved, but if my one-second counts were accurate, it was about three minutes between each move.
Even with the counting and praying, there were still a few moments where I was this close to bailing out; swallowing was difficult, breathing was difficult, I was getting a kink in my neck from the plastic headrest, and having my arms & legs strapped down was just a bit too much. But I did make it through. Later on I realized another factor that made the earlier PET scan so much easier; Dr. Bleeker prescribed a sedative for me to take in preparation for the test. I think the mask would still have been a problem if I’d had the sedative on board, but I have no doubt that would’ve helped.
Later that same afternoon we met with Dr. Bleeker to go over the results… The PET scan basically measures the glucose uptake of cells in your body. To do that, a radiotracer is injected into the bloodstream; for cancer detection, the radiotracer used is FDG (fluorodeoxyglucose) tagged to glucose. Cancers absorb glucose differently from normal tissue, and the PET scan is able to detect those differences; in reading the PET scan, a radiologist reads the scan results and grades the “glow” of an area in SUV (Standardized Uptake Values). When I had my first PET scan back in April, the glow in my jaw was a 10; following chemotherapy it was 3. Considering the fact that normal or benign tissue has an SUV of 2.3, I’d say we’re heading in the right direction.
I started writing this post about three weeks ago, and am just now finishing it up. I could go on, and tell more about the radiation therapy, but I think I’ll just post this and start a fresh post on that topic. Pretty sure I can finish it in less than three weeks.
A good friend — Ken — found an end to his earthly suffering today, losing his battle with mesothelioma.
I’ve known members of Ken’s family much longer than I’ve known him, so it feels like I’ve known him forever. In reality though it’s only been about 15 years or so. Ken is a few years my senior, and has been retired longer than we’ve been acquainted. He’s not exactly an official mentor, but he has mentored me on many levels, usually unintentionally. Such a great guy; quiet, humble, honest… Seems like they don’t make men like anymore, or at least not as often.
Ken’s mesothelioma diagnosis came long before I was diagnosed with DLBCL, but we somehow ended up on the same rotation for chemotherapy; I counted him as my chemo-buddy. Mesothelioma is a much different and more aggressive cancer than DLBCL, and his fight was simply for a little more time; there is no cure, and the chemo only slowed its advance until it outsmarted the drugs. He had explored lots of treatment options in the last few months at Sanford Cancer Center and at Mayo Clinic, but the doctors said there was little more they could do for him and he wouldn’t likely see Christmas. I really hate it when they are that right.
The last time I saw Ken was two weeks ago this Sunday; Ken was admitted to the hospital a week earlier, and Yvonne and I stopped to visit, staying much longer than we had intended. I’m glad we had that time with him. Ken looked good that day, alert but a bit sleepy from the drugs helping to control his pain. The cancer had spread to his abdomen and had formed several tumors which were collecting fluid and causing a lot of pain. He and Harriet were so grateful for and hospitable to every visitor; the embodiment of graciousness. The strange thing was that only three weeks earlier at our last chemo session he looked great and was in no pain at all. That was five weeks ago, and today he’s gone. I just can’t wrap my head around that.
But Ken was well grounded in his faith in Jesus Christ, and there’s no doubt he’s in a better place now, free of pain and worshiping at the Throne. It’s hard though, knowing I won’t see him again, and knowing how difficult this will be for his family. Still, I envy him just a little… But I know it’s not my turn yet; God still has a job for me here, so I wait patiently for him to call me home, and try to become what he wants me to be.
The first biopsy that was done to remove the tumor from my jaw had relatively few adverse side effects (other than a day or so of feeling like I was clopped in the mouth by a horse), but I wasn’t so fortunate following the second biopsy. One of the things the surgeon warned about was possible injury to the mental nerve, which passes through the mental foramen — a passageway just below the area where the tumor was excised — and then branches out to provide sensation from the skin of the chin and the lower lip.
The first oral surgeon did a decent job of staying clear of that nerve — he probably held back a bit after realizing it wouldn’t be possible to dig the whole tumor out once he got in there… But ever since the second biopsy, my lower lip has had that weird tingly feeling like you get when your foot or hand is in a weird position for too long and “goes to sleep”. It feels weird, but it at least works as it should; no problem with muscle control, only sensation. When I eat, it’s hard to know if there is something stuck to my lip, so I tend to keep a napkin handy to make sure there’s nothing embarrassing going on with food on my face!
The really weird thing is that it’s like there are some wires crossed in the nerve bundle; when I brush my teeth and the brush moves past my lower lip near the area where the teeth were removed, it feels like I’m brushing my chin too. I get a similar sensation when licking my lips; when my tongue moves left to right across the inside of my lip, it feels like something is moving right to left across the front of my chin. And when I drink a glass of cold water & allow the water to swish down between my lower lip & gums, I get a cold sensation on my chin, like the water is dribbling down my chin. Almost like a dribble cup that follows me around everywhere!
I brought the problem up when I last met with Dr. Stanos three weeks ago, but he had nothing to offer other than he’d never heard of that before. I really hate it when the professionals say things like that; tells me that this is the way it is, and unless it somehow heals itself, I’ll just have to learn to live with it.
It also reminds me of how fearfully and wonderfully we are made, and how even with the advances in technology and medical science, there is still so much about the human body that is still a mystery. I have to laugh at the people in the science community who play like they have it all figured out and there is nothing that we as humans can’t conquer. They play like they know the origin of everything and how it evolved to the point we know today, and we just need a little more time or more sophisticated tools to figure out how to cure all things. In reality we humans are just pikers compared to the Designer of these wonderful things. Modern medicine is wonderful stuff, but in many ways it’s little more than hacking; we know enough to mess with or fix a few things, and enough to be dangerous, but it seems there is far more that we don’t know than we do. Our vast knowledge store is just guesses at how things came to be. Only God knows the bigger picture of how he created all things and how they all work together.
For the foolishness of God is wiser than men, and the weakness of God is stronger than men. I Cor. 1:25
When I first learned that I had cancer on my jaw, the oral surgeon made a point of telling me that what I had was not squamous cell carcinoma, but rather non-Hodgkins lymphoma. At first I didn’t quite get why he was making that distinction, but after thinking about it and doing some research on it, it made sense; squamous cell carcinoma is the cancer usually associated with the use of chewing tobacco. And I suppose, being an oral surgeon, that’s typically the type of cancer he sees when there is a tumor in that area of the mouth.
But I have never used chewing tobacco — I’ve always thought it was a disgusting habit, and was never even tempted to try it. I did try smoking, once upon a time (after “borrowing” a Lucky Strike or three from Dad’s packs) but that was enough to keep me from making a habit of it. I still have trouble grasping why any kind of tobacco use holds any appeal to anyone. Nasty habits.
I also remember wondering early on whether people would assume that the cause of my cancer was chewing tobacco; maybe people have thought that, but I haven’t given it much thought. Then last week a guy I was chatting with asked if I had ever dipped; nope. So I explained the difference between the two types of cancer, and the fact that mine is special (I guess) because it’s pretty random in who it hits and where. Typically lymphoma is found in the lymph nodes (hence the name) and often in the bone marrow, but Dr. Bleeker said this is the first time he’s seen it in the jaw like mine. I hate it when medical professionals say things like that.
When I was doing some Googling about squamous cell carcinoma, one page I bumped into (and bookmarked) that caught my eye was the story of Curtis and his ordeal with squamous cell carcinoma. Most memorable of course are the photos of his surgery; downright gruesome. His cancer was on the inside of his cheek, but also affected his jaw; getting rid of the cancer and reconstructing the area looks like it was a major ordeal. I doubt (and hope & pray) that my reconstruction doesn’t get that involved, but those photos should be shown to any kid even thinking about using chewing tobacco.
I’m sure that some tobacco users will point to a story like mine — that someone who has never smoked or dipped can get cancer — and brag that they’ve been smoking/dipping for decades without consequence… Some people just refuse to learn from others’ mistakes I guess.
Today is Tuesday, May 21, officially Day 28 of The Cure, and day six following the second chemo infusion. Like the first infusion time, it set me back on my heels a bit, but six days out I’m definitely on the upswing. This time around I’ve had a bit more nausea, and things are still a little off, but not bad. Yesterday was a hungry day; I ate like a horse. Today isn’t quite so much so, but I can tell I’m definitely on the up-swing. Not quite back to where I was pre-treatment, but that will come soon enough.
One thing that’s a little odd today is that I can feel lots of twinges in my jaw; not sure if that’s just the deadened facial nerve messing with me or if it’s the tumor ‘convulsing’ (for lack of a better description…) The twinges seem to extend past the middle of my lower lip though, and feel a bit familiar to previous bouts with weird pains. It also makes me wonder if it’s the cancer reacting to the anti-cancer poisons in my system. If so, let’er rip. Kill that sucker.
Last week’s infusion almost didn’t happen on schedule… My PICC line dressing needs to be changed on a weekly basis, so I usually have that done on Tuesday mornings. Last week when I showed up for the change, the nurse looked at the orders on the computer & thought a blood sample was also needed that day, so took it by way of the PICC line, hoping to save me a poke in the arm the next day. Sidenote: Getting a blood draw from the PICC line is convenient in that I don’t have to get a needle in the arm; the line is already in a blood vessel, so it’s just a matter of drawing some out. But it’s a bit of a nuisance in that they can’t just pull blood directly out without first flushing it with saline (which gives a weird taste/smell along with it) then they have to waste some of the blood that’s drawn out so that it’s not contaminated with saline. Anyway, the sample was supposed to be taken the morning of the infusion, and really shouldn’t have been a big deal, but I got a call from the infusion center later that day telling me the numbers were a bit off.
The blood test that was ordered was for absolute neutrophil count (ANC.) They like to see a number above 1500, but mine was around 1300. In speaking with one of the nurses from Dr. Bleeker’s office, she said that they would likely test again the next morning, and the Doc would make the call whether to postpone or go ahead with the infusion. So the next morning another blood sample taken (this time from a vein instead of from the PICC line, which hurt like crazy, and the bruise is still there!) and the ANC count was in the 1800′s; a much better number! Dr. Bleeker said that sometimes if they have a patient with a low ANC count, he’ll have them take a walk and test again after; maybe the difference had to do with the fact that on Tuesday I drove to my appointment, had the valet park the car, and took the elevator up. On Wednesday, Yvonne drove, we parked in the lot, walked in, and walked up three flights of stairs before the blood draw. I’ll have to remember that next time! Maybe the painful poke had something to do with it too, but I’m not going to attempt a repeat of that.
Just to be on the safe side with the white blood cell counts, Dr. Bleeker had me go back to the Cancer Center on Thursday for a shot of Neulasta (aka Pegfilgrastim), which boosts bone marrow production and release of white blood cells. Since getting the shot in the arm, I’ve experienced the usual side effects; bone and joint pain, muscle pain, and yes, constipation. Wonderful stuff. Oh, and just to make things more interesting, they recommended taking acetaminophen to counter the first three side effects, but of course, that exacerbates that last one. Oh well.
The infusion went much more quickly this time; first go-round they need to be careful with the dosage on the Rituximab, and since they had already figured out how quickly I could take it in, it was done in a couple of hours instead of seven. Speaking of Rituximab, we got an itemized statement from Sanford Health on Saturday, laying out all the drugs and treatments I have received, and the price tags on each. The price on the Rituximab is a staggering $10,528 per dose. That’s like a liter bag of saline with the good stuff mixed into it. Ten-thousand, five-hundred and twenty-eight US dollars per dose, and that’s just the cost of the drug, not the infusion; that’s a separate line item. Must be some really good stuff!
In general, it’s a little humbling seeing the prices attached to a life-saving treatment like this; if life were judged as it is with used cars, I would’ve been long past the point of diminishing return, and you’d find my body among the rusting hulks out at the junkyard getting parts pulled off of it. But I think there’s still some value in this old rust bucket, and it’s worthwhile investing in a cure. At the risk of sounding a little morbid, seeing the dollar figures attached to the treatment makes me all the more eager to make my days count; it adds value to what I have left. Even without the “added value” they become more dear to me because I likely have fewer ahead than behind me (not because of the cancer; I’m just not getting any younger.)
The question I hear most often after the last infusion is still, “How are you feeling?” I really don’t mind the question, because I know that people care, and they know that the treatment can be difficult (it is), but honestly, a good answer to that question usually fails me because how I feel — physically — changes moment by moment, day by day with this treatment. Plus, the further I get into this treatment phase, the less concerned I am about how I feel physically at any given moment, because I know it’s going to change. I may feel rotten right now, but I know that there are better days ahead, and that is what I focus on. There may be worse days as well, but I try not to dwell on that possibility.
That makes me think back to an earlier post; I guess the one thing that I do feel that is somewhat consistent, and that can be more easily related is my feeling of gratitude, or thankfulness; grateful for everything and everyone in my life. I think of the friends who call or stop by or offer a meal, or just post something encouraging on Facebook or elsewhere… I think of my family… My brothers & sisters and my kids, and most importantly Yvonne. I’d be lost in all this without her.
I watched the video below this morning (thanks, Kelli!) that tells a bit of the story of a high school kid dealing with terminal cancer. In the last few minutes of the video his mom talks about the ordeal, and says,
I think that’s one of the blessings of cancer, is that you kinda come out of denial, and so in doing that, things are better. You know, that life is richer. Everything means more, beauty is more beautiful…
That is so true. Every day I am more thankful for the gift of life and health, the gift of friends, and the wonderful blessing that is my family, especially the loving wife that God has given me; I am so undeserving of the affection and love she showers on me. And so undeserving of the love and grace given by God above. Cancer has in a way put many things in my life in sharp relief, helping me better prioritize things according to a better standard. I only hope my distractedness doesn’t get in the way of this becoming a more permanent condition.
I guess I’m also thankful for the clarity that cancer brings; when I watched that video this morning and heard what Zach’s mom had to say about cancer giving a whack upside the head & making those involved appreciate things more, it made me think of the term “Cancer Goggles.” Kind of like “beer goggles”, except without the negative angle! I did a quick Google search to see if I was the first to coin the term, and sure enough someone else did just recently, and even threw a Blogspot blog together. Still, I think the term is very apt, and I think it’ll stick.
As Day 19 comes to a close, I figure an update is way overdue. The chemicals that were pumped into my system on April 24 made me feel pretty crappy for several days after, but it’s been just like Tim predicted; a few “tough days… followed by better weeks.” Two weeks and four days out, and I’m feeling somewhat normal. I suppose it takes that long for the body to flush all that out — but a few other things have happened that really helped as well:
Got the stitches out of my mouth; the sutures from that first biopsy on March 25 were still in place, as were the ones from the second dig on April 4, and they were all driving me crazy (yeah, I know; short trip.) They are supposed to fall out on their own within a couple of weeks, but after five weeks… Time to intervene. I stopped by Dr. Stanos’ office on April 30 after another appointment in the same building to ask about it, and was able to be seen by Laurie Gromer, the office PA, right away. She was familiar with my case, and happily pulled out all the stitches. Felt so much better…
Finished the last of my Prednisone doses. The Prednisone is prescribed as part of the chemotherapy (it’s the ‘P’ in R-CHOP) and helps the other drugs work more effectively, but one of the side effects is restlessness. I started taking the Prednisone on Day 2, and I didn’t sleep worth a hoot the whole time I was on it. Since my last dose on Sunday I’ve been sleeping better and better each night, and that makes a world of difference. Not to mention the fact that those pills are the nastiest tasting things on the planet… Reminds me of the times I’ve tried to chew regular aspirin tablets. Gah! I did figure out that the best way to deal with the nasty taste is to bury the tablets in a spoonful of yogurt, and just swallow the whole works down. What doesn’t touch the tongue isn’t tasted. (shudder)
The tumor seems to have stopped growing, and my jaw seems to have stabilized a bit. My lower front teeth still interfere a bit with the uppers, but the fit doesn’t change like it did just two weeks ago, and they aren’t nearly as sensitive as they were, which means I can actually chew my food! Seems like a minor thing, but just being able to pop something into my mouth and be able to mash and grind it up with my teeth is huge. The gap on the left side where the teeth were removed is still pretty tender, but is getting better. Because of that, chewing on that side is awkward, but I might eventually get the hang of it, provided it’s nothing too crunchy and doesn’t break into sharp bits. My lower lip is still numb, but I still get occasional “zings” that give me hope that it will come back. I asked the PA about that during my visit to Dr. Stanos’ office, and she said that the tumor may be putting pressure on that nerve as well, and as it shrinks (I hope) that should be better as well. Again, that’s the hope.
Spring has finally arrived in the Dakotas! Seeing some sunshine, even though I’m not supposed to spend much time basking in its glow, helps a lot. We got a couple of really-late-season snowfalls in April, but the snow didn’t linger very long. Now the grass is greening up, the flowers are blooming, the trees are budding, the birds are back… We’ve even seen a couple of pairs of rose-breasted grosbeaks at the feeder in the back yard. Very cool!
Prayer. I’m amazed at the crowd of people who have offered to pray for me over this whole cancer adventure. I’ve always tend to be one who is eager to help others in whatever way I can, praying for them as well, but don’t always feel comfortable asking for help or for prayer. Over the years I’ve learned though that as much as I enjoy helping others, others enjoy helping me as well. Same goes for praying; asking others to help pray my way through this is far more difficult than offering to pray for someone else, but God blesses those we pray for, and blesses us through our time with him, so who am I to deny a blessing to others by not asking them to pray for me or accepting their offers to pray for me? It’s difficult to explain how the praying helps because I don’t know exactly, but what I do know is that the peace I feel through this whole situation can’t be explained in purely naturalistic or psychological terms. Yes, I have some confidence that the oncologist knows what he’s doing, and the cancer center staff know what they are doing, and that the drugs will be effective… But still, through all of this, I haven’t been worried a bit.
The last two weeks haven’t been terribly eventful, but they haven’t been uneventful either. The PICC line is still there, and is still a pain in the neck.
I’m supposed to keep it dry, which means I either take a bath or cover it thoroughly in order to shower. The dressing needs to be changed once a week (thank God for that!) and last week the nurse who changed the dressing gave me a suggestion for covering it that is pure genius; Glad Press’n Seal cling wrap. It’s a fairly stiff material that has a light adhesive on one side. The adhesive sticks lightly to most everything but itself; it sticks tightly to itself. To cover my arm I pull off about 24″ from the roll and wrap it around my bicep, making sure to completely cover the dressing top to bottom, but leaving my elbow free to flex. The length ensures a double layer of protection over the top of my bicep and keeps water from intruding through any gaps. Works perfectly. I’ve also used Press’n Seal for other projects, like painting mirrors on my car; far easier than trying to apply masking tape to an area.
My appetite has pretty much returned to normal also. I never did feel terribly nauseous, but my eating habits changed pretty drastically after chemo. The nurse explaining things told me I would crave a lot of strange things; although I wouldn’t necessarily call them strange, I would call them “high calorie”; lots of sweets and rich foods. I don’t remember exactly everything I ate — I should keep a food diary next go-round — but I don’t remember being hungry either, and I do remember enjoying the things I was eating. Neither have I lost any weight through all of this. I think that’s a good thing.
That second week, I was feeling pretty good, and got a little cocky maybe. I had been really good about avoiding large groups where the risk of catching a cold or flue was greater, but that week, Bryce graduated from tech school, and I went to the ceremony. The next day I was having lots of cold symptoms, and boy was I kicking myself. I stayed home from church for the second Sunday in a row, and skipped BSF the next Monday as well. I miss both of those groups. I took several vitamin supplements trying to get over that quickly, and somehow it worked; by Tuesday I was feeling much, much better. I did go to church this weekend, and am planning on BSF tonight. I managed to skirt past the large crowds at church, and had contact with only a few people; planning to do something similar tonight as well. It’s the last night for BSF, and… I’d hate to miss out on that & miss seeing the guys in my small group.
Last week was a little difficult; my hair started coming out. After getting through the first week without losing any hair I was hoping that I wouldn’t, but then last week I noticed a lot more, um, short & curlies laying loose in my undershorts when they were down, and others would come loose without much provocation. That made me wonder about the hair on my head; looking in the mirror I could see little tufts that weren’t laying down against the head with other adjacent hairs; a light pinch and pull was all it took for them to come out of the head 20-30 at a time. I decided to take charge of the situation; Yvonne buzzed my hair down to a basic training crew cut, then I went after the remainder with a razor. It took a few days to get used to the chrome-dome thing, but after several days and a second shave, it’s feeling pretty natural, albeit a little cold when the weather isn’t warm. Doesn’t take much to need a hat!
Now that it’s after midnight and officially Day 20, that of course means that the second infusion is only 50-some hours away. And that means the feeling of normalcy and health will be going by the wayside once again. I don’t look forward to the treatment or its side effects, but I do look forward to the impact that it will have on the cancer. Kill it. Kill it dead.
The weekend following my first chemo treatment — Days 4 and 5 — proved to be a bit tougher than days two and three. The first two days seemed to go pretty smoothly. Other than not sleeping well (probably attributable to the Prednisone) and in turn sleeping in kinda late, I made it to work both days. I kinda hit a wall towards mid-afternoon on those days though, so didn’t put in a full 8 hours on either day, but for the most part I felt ok and was functional. Encouraging comments from others about how I looked, and just being at work that quickly after chemo made me start thinking that this treatment wasn’t going to be a big deal at all.
Then came the weekend…
Cancer cells become a problem because their division happens at a rapid and uncontrolled rate, so the toxins that were dumped into my system are designed to affect the process of cell division. One of the unfortunate side effects of the chemotherapy is that any normal cells that are supposed to replicate and replace themselves rapidly stop doing so. Over the weekend I became painfully aware of the most notable places where that happens; the palms of my hands, the soles of my feet, and my mouth. Saturday was really the first I noticed any of that; my tongue started feeling kinda raw, and my feet and hands became especially tender. Walking any distance was uncomfortable, and anything that I did that stressed the skin on my hands just hurt. I thought it strange that that was the case with the feet and hands, but it makes sense I guess since those are parts that see a lot of wear, and if the skin isn’t replenishing itself as it normally would, it just wears out. Of course, I was told all this on Day One, but had forgotten about it, or at least how much it would affect me.
And on top of all of that, my energy level was at an all-time low, or so it felt. Just doing some routine stuff around the house on Saturday morning left me feeling totally shot. Resting helped, a little, but there wasn’t much there. The weather was so nice, and with the recent ice storm there was a lot to do outside, but one of the other things that cancer patients are told is to stay out of the sun, so I felt like the sickly little kid watching his buddies play ball through the window; wasn’t much fun. All of that added up to one big colossal pity party. I’ve been told that I’m entitled to a few of them, but it doesn’t make it any easier.
Later in the afternoon, when the sun wasn’t so high in the sky, we went out for a walk. Our usual route takes about 40 minutes, but Yvonne knew I wouldn’t be up to that so changed things up to cut through Spellerberg Park & make it about 20 minutes instead. Walking up little inclines felt like hills, and the “huge hill” that had to be climbed to get home just about did me in. No energy. I have to admit though that after that walk, and a short rest afterward, I felt much better. I slept a bit better that night as well. Tired is good in a way, I guess.
The lesson from all that was that I’m not so tough, and this chemotherapy thing isn’t easy. I did receive a lot of encouraging words from friends who have been there, and that helps immensely. Tim has been through two bouts of prostate cancer, and had this to say last night:
Know that there will be tough days… followed by better weeks.
There was always a time lag after a treatment for me: first day or two were fine… then sick for a day or 2-3, then better for a week or 10 days.
As long as you know what to expect, it gets much easier.
That last line should be bolded, italicized, underlined, highlighted, and emblazoned in red; knowing what to expect is huge. The unknown is the worst. Now that I’ve been through one treatment, I know better what to expect. Today, Kathleen told me that when she went through breast cancer treatment, she found there was a slightly cumulative effect from the treatments; each successive treatment hit her a little harder. I think I can deal with that, especially when having somewhat of a baseline expectation. And above all of that I need to remember not to expect too much of myself, and not to push myself too far.
Back to last weekend: Sunday went much better. When I hit that wall on Saturday, I resigned myself to the fact that I wasn’t going to accomplish much on Sunday, which is as it ought to be, so planned to just stay home from church and lay low the whole day. There were some things going on at church that I wish I could’ve attended, but the admonition to avoid crowds was pretty strong; too many germs floating around that can wreak havoc on a compromised immune system. Yvonne & Caleb did go to church, so it was nice to have some quiet time on my own; wish I could say that I made good use of the time, but I can’t, other than just recuperating from Saturday. Yvonne came home with smiles on her face from all that went on, which really lifted me up as well.
And now it’s already Tuesday; Week One is nearly done, and today felt almost normal. Ready for Week Two!