Today’s treatment was the second of five more-focused radiation doses aimed at the tumor site. They’ve added an attachment to the machine that brings the field much closer to me and put in a nifty square of metal with a round hole cut out (where the radiation will pass through). I’m told it’s my daily BLT with cheese, being made of Bismuth, Lead, Tin, and Cadmium. These metals have a low boiling point and can be melted and reused for another poor radiation-receiving soul. Only one shot of this type instead of the four I’ve been getting until now.
Oh, and the elevators at Lemmen Holton are now both
working. I cannot over-emphasize what
wondrous news is this! Seems a small thing. It isn’t.
I have quite a lot to say regarding radiation, not all of it
horrible. In fact, quite a bit of the experience is fascinating. But given the context, I am having a hard
time choosing a starting point. Today marks 70% done with treatments and while the burns are
seriously bad, it could be worse (perhaps more on that in another post). I can
barely tolerate clothing, and comfort measures are limited, because the best
stuff would scatter radiation all over the place. Think of a sunburn from sternum
to arm pit with the most severe bits being at the bra line and on all the scars
from surgery. Aloe has stopped being helpful. Aquaphor (like a petroleum jelly)
is moderately helpful, more important for maintaining skin hydration than for pain
management.
I’m healing well from the hysterectomy, still on lifting restrictions (doubled down from radiology not wanting that arm stressed anyway). No doing laundry for me! Really, you local folks, do call before visiting because clothing….
All in all, radiation is still better than chemo. I am emotionally worn out. I miss managing my kitchen, I think. Maybe I don’t. As of Monday, my fledgling adult children will both be back at U of M for the year, and so it goes. Meanwhile, could I ask for a Benison family greeting in lieu of hugs: index finger high fives (think Sistine Chapel Adam/God). That’s as much touching as I’m able to manage right now.
I have finished chemo treatments! Now I’m waiting for side effects to subside, including tiredness and mild neuropathy (numb feet, sometimes painful). As a method of keeping one alive, I suppose chemo must work or they wouldn’t do it, but only the desperate should attempt it.
Yet to come this month, radiation will start with a “simulation” in which the machines are set up and my person is tattooed with marks for lining things up. Then I will start the course of 30 treatments. That means 5 times a week for 6 weeks. We expect that to begin around July 22 if all goes as planned. Fatigue and skin problems at the site are the big nasties with radiation.
In the meantime, hysterectomy is scheduled for July 17. Recovery is not too bad, no lifting (even laundry) for 6 weeks with no gym for 8 weeks given the type of gym I will resume ASAP. I am grateful to have it overlap the radiation, to compress the inactivity. I do have some physical therapy on offer, and that particular therapist will serve me very well restoring me to the life I’ve lost touch with since March.
This week I shaved what remained of the hair. It was still
coming out and very patchy. Clean slate, no purple dye etc. We’ll see what
comes back.
Here’s what I look like on a good day, 12 days after chemo 3. And after a steroid pack for severe rash from chemo drugs (Taxotere, nothing positive to say about that!). As you can see, the Lord has far fewer data points to keep track of.
My cousin, Ann, came for a visit with my mom. We went to lunch, mostly chatted. Best way to wear a girl out not involving weights!
Early this year, before cancer 2, I had a dialogue with someone dear to me about fear. Her self-talk reminded her to look at Jesus instead of looking at her fear. Brilliant! I had in mind a gnarly monster approaching obliquely from behind while hearing Jesus gently tell me to look in His wonderful face. He would take care of both the monster and me. Little did I know at that moment what a powerfully helpful image and tool that would become the very next month.
There are so many monsters. Some of them are tiny, no big
deal. Others threaten to hack and slash everything. Either way, none are
welcome. And these particular cancer monsters do deliver on their promise, they
certainly make life miserable. That fear, dread, foreboding, was entirely
justified. In the many days of waiting between diagnostic and treatment
decisions, good news was almost non-existent.
Doctors are still talking about cure, and “not-likely-to-die” is objectively
good news. However, the journey through not-likely-to-die is not the same as
not-likely-to-suffer, not-likely-to-thrive,
not-likely-to-have-other-body-parts-in-need-of-attention, the list continues.
Anyway, after my last surgery (March 6), I experienced . . .
Knitter’s Block? Is that even a thing? I’ve used kitting for decades to cope
with all kinds of life situations, and I couldn’t pick up my needles. Huh.
Deploy Quilting Friend. I was on serious weight restrictions, so she came over
promptly when called to dig through my stash, an impressive one, to find
fabrics for hand piecing a quilt. I’ve never pieced a quilt that way. Takes a
long time. Well, I have nothing but time available and lots of waiting. English
Paper Piecing it is. I’m doing nothing fancy with it, just stash busting. But
here’s the thing. In collaboration with my posse, there is so much in this
quilt that is still an expression of groaning, hope, add your own idea to the
mix. I’ll be closing out the piecing soon to prepare for the hand quilting
process. I have a frame ready to go and my goal is to have it loaded or prepped
in such a way that by the end of July (more surgery) I will transition to that
phase of the process. Maybe that will carry me through radiation? Who knows.
One week after chemo treatment, I get labs done. There is no appointment, just show up sometime that day. The doctors are looking for red and white blood cell counts among other things that tell them how much havoc the chemo has wreaked. Days 7-10 of the chemo cycle are “immune compromised” days when the body is extra-vulnerable to opportunistic infections. They haven’t really told me what would happen if they don’t like the numbers they see, but why fight monsters that aren’t coming after me? I don’t worry about it.
This Monday, Ani took me for my blood draw. Her conclusion: “Mom, you are such an extrovert.” Her offer of proof: I was dragging my worked-over, semi-live corpse into the office. When the phlebotomist (aka Vampirina) called me in, my countenance changed and I started making wise-cracks, totally engaged (in my defense, I do tend to giggle with my daughter, sometimes very inappropriately). Even Vampirina seemed cheered. Good humor was apparent to Ani until the elevator doors closed at which point I started hugging corner walls again. Boy was she entertained! What can I say? In the corner, one does not expend energy on trivial things like balance, especially when the floor moves.
The day before chemo has become known in Casa Benison as “Ativan Day.” Honestly, there is nothing I can do that keeps the anxiety at a distance. I deploy countermeasures like prayer, breathing, meditation, a nice walk, but the stress is overwhelming. Largely that is due to the port-induced drama-fests of the first two chemo treatments. Chemo Day Three was not so bad. In fact, it was quite boring. Incidentally, the doctors talk about cycles because chemo day itself is just the beginning of physical abuse and monitoring/managing the side effects.
On Monday, I went in for 9:45 labs to make sure I was healthy enough for the onslaught of chemo. I was. There is quite a lot of waiting, then the warm blankets–the silver lining of the whole deal. Happily, the new port was accessed with no fuss or bother at all. In fact, I will turn down the freezing spray next time because it just makes me itch, like a burn. They puncture the skin to access the port which is still better than an IV. Once that poke is done, then it’s more waiting while pre-chemo meds are administered (anti-nausea and a steroid). The in-house pharmacy mixes and dispenses the chemo drugs after the labs come back clear and all the data is reviewed by both nurse and doctor (I only see the nurse at this particular event).
I get two chemo drugs, Taxotere and Cytoxan. If they sound like poison to you, you’ve got the idea. Each is administered by itself because they each have allergic reactions that must be monitored (hence the steroids). I have been fortunate in not having those reactions, and that means they can administer each of those more quickly now than they did during the first two cycles. One hour each. Once they are hung, I can wander the building as I please (though I don’t really please), and there is a beautiful patio outside that is reserved especially for patients like me to use (which I do please). Before I go outside, the nurses cover the chemo bags with UV blocking shields. Delicate creatures, they don’t like sun (they probably react poorly to a stake in the heart, too). But the fresh air, the large planters, and the downtown setting is really refreshing for me. And Jim goes with me.
At the end, the nurse will flush the port with heparin to prevent clots and stuff I barely understand but it must be done. Doesn’t feel any different than the other meds. I have chosen to receive my Neulasta shot in person the next day instead of wearing a device that administers the shot automatically. I used the device for cycle one and disliked it intensely. If I lived an hour away from the doctor, it would be a blessing, but I’m 10 minutes out and it isn’t worth the hassle. So, the nurse reviews my upcoming appointments and schedules my shot, and we are on our way. We were told at education class that all of this would be less than 4 hours. This last time we clocked in at just under 6 hours, and this time had the fewest hiccups.
Chemo Day 3 having been the best of the bunch, I am hopeful that Chemo Day 4 will be similar. Because of the steroid pre-meds, I felt pretty good and enjoyed a short walk before taking up residence on the couch. My mouth tastes terrible by the time we get home, but for a brief time, life is good. Day 1 post-chemo is when things get lousy. Days following chemo are grim and need their own post. For now, the day of chemo is largely boring and spent in a not-private, could-be-worse kind of place. It can be quite noisy–oppressively noisy with lots of alarms pinging and very loud TVs over a variety of conversations. Think of hanging out at your doctor’s office for a whole day. Oh, and having Drano poured into you.
“The status is not quo.” I would very much like for this status to never become “quo.” Cycle two had too much drama. I’m still bruised from the port re-install and this new one is bothersome and makes driving very uncomfortable. Being a passenger is no problem.
I am theoretically halfway through the four treatments, but not through all the side effects. I now get quite tired very easily, the kind of tired that settles in around and behind the eyes and about the shoulders like a shawl (one I knitted, of course). I have some very lightweight hoodies that fit loosely on the head and are helpful for the change in temperatures while also giving me some measure of retreat. Kind of like swaddling.
Speaking of my noggin, I still have some hair. Go figure. It is not enough hair to keep me warm. In fact, I get quite cold (see above). I also made some bandannas out of batiks and other fabrics I love, some from my stash. They’re a nice change from my previously made beanie style hat, though I also still like those!
Looking ahead, we’ve added more surgery to the plan. It was decided last week that a hysterectomy is necessary. I had thought that a D&C before cycle 1 had resolved the issue with a “nope, no cancer here” finding, yet here we are. Scheduling the procedure was awful with too many doctors having their say in the matter. I had hoped to get it done between chemo 3 and 4, but no such luck. They’d rather prolong my incapacity to the max. Recovery will be about 6 weeks and I don’t yet know how this will impact radiation. My hope is that it won’t be delayed more than a couple weeks. Henceforth, I shall think of July 17 as “Menopause Day.”
Meanwhile, I shall endeavor to remain in the present. Planning this stuff forces one to do too many days’ worth of trouble in advance.
Second cycle of chemo on Wednesday was an unmitigated disaster. My port was “malpositioned,” meaning “impossible to access,” while highly effective as a means of torture. I had very good support with me, and the nurses gave me more Starburst Jellybeans than I could comfortably eat. Guilt is wickedly effective.
The radiology department finally got involved, and they offered to:
Go on torturing me because it is fun for them
Bring me back another day when I could have anesthesia
I’m taking option 2 with threats on anyone attempting option 1. Jim’s the enforcer, so, you know….
New plan is port surgery at 7:00 Monday morning (5/13), which means there will be good parking. Radiology will leave the port “accessed” so they won’t have to re-stick an already tender, damaged me to complete chemo cycle two.
My limbic system is driving the bus, but I spent a very lovely, sunny day with my son doing some fun things and some business things. And now, my daughter is home for the summer! I’m about as bruised as it gets (oh, wait, no – I’ve had knee surgeries, mastectomy, reconstruction and lumpectomy). In short, I’m finding life exceedingly difficult physically and emotionally.
Thank you all for your prayers, your cards, your friendship. I need them all abundantly.
Rocking Chair Theologian 