All that Glitters is not Gold

Sometimes it’s silver. At the end of radiation is a beautiful, blue pot of Silver Sulfadiazine Cream, USP 1%. It is the gift of cancer leprechaun. As gold is to rainbows, and triamcinolone is to chemo, so is silver to radiation. It even shimmers in the pot. And oh, the relief!

He Shall Feed His Flock

There is a baby grand piano in the lobby of Lemmen Holton Cancer Pavilion that resounds up six floors worth of cancer related offices and treatment suites. I’ve been treated on all but one of them. Usually, the automated player piano software drives the music. Unobjectionable except when it plays Sondheim (good) Send in the Clowns (seriously NOT good). But I can always, as in 100% accuracy over the last several months, tell when a real human being is playing instead of the pre-programed stuff.

Today, my favorite piano volunteer was playing a gorgeous arrangement of one of my favorite arias from Handel’s Messiah. City Chapel this fall is reading Isaiah together, the source material for this aria. “He shall feed His flock, like a shepherd. And he shall gather the lambs with his arm, and carry them in His bosom. And gently lead those that are with young.” You can look up the precise reference yourself. The

alto that sings it is rich, luscious, and the soprano soars over top of it with great hope and comfort. I’ve had a tender spot for it since cradling my baby son.

Tomorrow is treatment #30 of 30. Silver nitrate is already in my radiation kit bag.

Today, all this is difficult to bear.

On tap for July

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.

A Snapshot Day in the Life

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!

Chemo day + 7 (or one week later)

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.

Chemo Day

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A chemo bag, with my name on it

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.

Monday begins Cycle 3 of 4

“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.

Hair Today, Gone Tomorrow?

I woke up Monday feeling so much better! The port has healed up so it is irritating but no longer painful. Driving is even comfortable enough now! I’m taking Tai Chi and restorative yoga classes at the cancer center (free stuff is awesome!). Yesterday I did a workout at my gym. Body weight stuff only. Not impressive, but it did get my quads lit pretty good! I’m planning on workouts tomorrow then Tuesday of next week.

The big news this week is hair loss. It is starting to come out. My nurses tell me it will take a while, but I probably will not have any hair by the time of the next chemo. Cycle 2 of chemo is set for Wednesday, May 8. I will see my doc on Monday the 6th for labs and adjusting medications to deal with the side effects, which were as advertised, miserable.

This week seems  like a reprieve and I will be looking forward with great anticipation to this part of cycle 2.

Cancer Snapshot

A poem, of sorts

 

You will get mouth sores.

With mouth sores, drinking and eating are difficult.

Nausea, dehydration will land you in the hospital, where all the germs are kept.

Start today

8 ounces water

1 teaspoon salt

1 teaspoon baking soda

Swish

Spit

Repeat

4 times or more daily.

 

 

Jab 4/13/2019

*The prompt was “write about water.”

The day after chemo education