Week 7 - Treatment Week 2 - Honeymoon Week

Monday, May 27, 2019

Today is a holiday but over the weekend we got connected to the visiting nurse association for home visits. There was an intake done on Saturday morning and another visit today. Nothing to report except more scheduling snafus need to be worked out. I’m thinking I should go into the logistics business down the road and see if I can help businesses/agencies eliminate the hundreds of wasted hours that not only have a financial cost but also takes a toll on the people they serve.

On Saturday we were told to expect a call from the nurse to setup the Monday visit. On Sunday the call came to schedule the visit for Monday between 11am-1pm. Perfect. After a rather busy week and in need of rest, sleeping in on Monday morning would be great.

At 8:10 Monday morning the phone rang. I answered a bit groggy, it was the visiting nurse, “Hi, I’m on my way, should be there in about 10 minutes!”

“What happened to 11-1?”

“Oh, wait a minute, is this Paul so and so?”

“No,” I replied.

“Oh, I’m sorry, I called the wrong patient.”

“If you want to come by this morning it’s fine but give me about an hour.”

“No, let’s keep it 11-1. I’ll call you when I coming over. Go back to sleep, so sorry to wake you up.”

I hung up and drifted back to sleep. At 8:30 the phone rang again, same number. “Hello?” Silence except for the sounds of someone getting out of a car and papers rattling. Call ended, butt dialed obviously. Fantastic morning so far.

At approximately 1:15pm the nurse called again and said she was running late and would be there in 25 minutes. She came, we talked, she was very apologetic for the morning, said she was covering for the holiday so was a bit flustered and we had a nice visit. She said the next appointment would be from the nurse assigned to me and scheduled for Thursday. That should be fine.

Tuesday, May 28, 2019

Set List: Estimated Prophet, Playing in the Band

Full day today. Blood draw at 7:30 to see if Friday’s results were a fluke (spoiler alert, they were), radiation at 7:45 and chemo beginning at 8, assuming there were no blood issues. We arrived promptly at 7:30 to a rather full house of cancer patients but not a whole lot of cancer staff or so it seemed. I think it was a holiday/Bruin’s hangover on Tuesday morning.

As the clock ticked past 7:45 and I still hadn’t been called for the blood draw, I decided to let the folks in radiation know I was at least in the building. As I stepped in the room to tell them, they announced it was perfect timing, they were ready for me (The Dead were already playing overhead in the room and they didn’t even know I was there yet…) and in less than 10 minutes I was on and off the table radiation done. Win-win I suppose.

I returned to the main lobby and got next in line for the blood draw, naturally they had called me while I was in radiation. By about 8:30 I was headed for chemo. The nurse said she checked with medical oncologist and they were going ahead with the chemo. We discussed why I had a second blood draw that morning and though she agreed the poor results from Friday were probably from the feeding tube surgery, she said I could also have some kind of medical phenomena going on too. Nope, no thanks, not interested in that explanation.

Shortly thereafter she returned and said the blood tests were fine. I was able to see the results on my phone app and although I still don’t know what the bilirubin levels were/are, the platelet count had shot back up to higher than a few weeks ago when the hematologist was consulted. At least things are looking good there.

After being hooked up to begin chemo, I received a visit from the oncology nutritionist.

There’s an old Woody Allen joke, (OK, there are lots of old Woody Allen jokes and I know I already referenced his humor once but please indulge me) it begins:

“I was walking down the street one day and a big limousine pulls up alongside me. A man steps out and asks me if I would like to go away with him to a land where everyone is fairies and elves and I can eat all of the candy I want and wax lips. And I thought, ‘Sure, why not? I was home from college that weekend anyway…’”

The nutritionist began going over with me what I needed to be taking in as far as hydration and calories were concerned. I told her all I have to do to lose weight is worry about something and the pounds come off. Not a good situation for this current predicament.

Her initial response, “Women hate it that men can do that.”

“Yes, so I’ve been told,” I said.

We discussed my concern about eating baked goods as I’ve tight-walked pre-diabetes for years and have heard cancer feeds off of sugar. To which I got a tremendous eye roll and a shake of the head indicating that was not accurate. She said though if I was concerned about too much sugar what I can add to my intake is fat to help with the calories. And then we went here:

“Do you like ice cream? Eat as much as you can stand. Butter, you like butter? Put extra butter on everything, Cooking eggs? Use the jumbo size and throw extra butter in the pan while you’re cooking, and olive oil too. When you put butter on a piece of toast, add butter to it. Use some jelly or jam and add butter on top of that. Salads? The calories from salad are in the dressing. Don’t be using the light stuff either. Use the regular creamy dressing, lots of it. Don’t stop eating baked goods either.”

As the conversation continued, a wide grin appeared on my face and she smiled back knowing what I was thinking. She said, “We don’t worry about high cholesterol right now. All we want you to do is try to maintain your weight as best you can. At some point the food is not going to taste good and your swallowing is going to inhibit your intake some so get it down now while you can.”

I told her since the feeding tube procedure had been surprisingly painful last week,  I was hoping that week 2 would be the easy week everyone talks about and she replied, “Yes, I understand, you want your honeymoon week.”

So I guess at 57 years old maybe I’ll be going on a quick honeymoon trip to the land of fairies and elves. Maybe I’ll even try the wax lips.

This was the second time for chemo so I knew the drill pretty much. Unfortunately, the IV this time was quite painful so I called the nurse. She in turn enlisted the help of the nurse I had last week who set things up on my other arm and I was back in comfort relatively quickly.

While receiving chemo, at about noon, my phone rang, visiting nurse association. “I’m right near your house but I can’t find it. I was going to stop in and see you.”

“I’m not home, I’m receiving treatment today. Besides, I saw someone yesterday who said you would be coming on Thursday.”

“OK, I can come on Thursday, I’ll give you a call to set it up.”

Next the radiation oncologist stopped by for our weekly visit. All looking good so far as he was concerned. I told him about the feeding tube procedure and the unanticipated few days of recovery but that was all behind us now, the only thing remaining was the removal of some temporary tacks holding the tube in place initially. They could be taken out in 7-10 days post op and I would feel a ton of relief once they’re out. Only problem was the removal was never scheduled and no follow up was in place with the attending surgeon. He would look into it and he departed.

Just as lunch arrived, the doctor happened to come back to see me about one other issue but when he saw the lunch he asked how my apple was this week. He’s good. I appreciate knowing he’s tuned in.

The day ended rather uneventfully, though I did have a couple of interesting conversations with other patients in my room. Got a lead on a great lunch place near home and was touched to hear one of the hospital directors sharing gifts with the women patients in chemo. Seems there’s a gift shop owner in the area that donates scarves to women patients in chemo every time a customer spends $100 in her store. Started out as just for breast cancer patients but has expanded to all women in treatment. Filing that away for later as inspiration towards a way to give back to this community.

I returned home and noticed that the chemo made more of an impact this time. I was feeling a little more spacey than last week, but not horrendous, probably the beginning of the cumulative effects as we move on.

Wednesday, May 29, 2019

Set List AM: The Big Steve Show

Set List PM: Lovelight, One More Saturday Night

Felt OK, this morning. Hoping to manage the chemo cycle better this week than last. Took all of the “as needed” meds to regulate nausea, acid reflux, constipation. Made the morning trip down to radiation. The radiation crew was concerned that there was a talk show on the Grateful Dead station this morning and there might not be any music. I put them at ease and said to leave it on, maybe they would switch to music during the show. Didn’t happen. Instead, during treatment, I listened to, “Hey man, thanks for taking my call. Do you remember the show in Milwaukee in April of ’86 when Brent had a meltdown on stage because the mic wasn’t working on his keyboards? That was really wild man.”

This whole music component to my treatment has been a fascinating social and psychological display. I seem to have won over the tech who was disinterested initially. She has now shared that she’s a huge CSN&Y fan, (truth be told I am too, even before finding the GD) and how she had a major crush on Stephen Stills until he married Judy Collins (which never actually happened) and she also has a thing for Roger Waters because his arms are jacked.

The fascinating part is I realize this was always about control. I was upsetting the apple cart by “demanding” they play the Dead. It was a challenge to her control of the room. She has given in to my musical preference knowing that it helps me remain calm. In return for her compromise on the music, I noticed she has begun calling me “John-Jack”. This has now gotten under the skin of Joe, who, clearly annoyed by his colleague, said to me, “You’re not a Jack are you?” I explained my dad was known as Jack to his siblings, but no, I’ve never been Jack. The relationships of coworkers can be quite a side show.

After morning radiation I returned home. I ate fairly well given the cycle and slept some. Because of the Monday holiday, I had 2 radiation treatments today so I headed back in the afternoon for the 2^nd session. Felt good that I was still independent and well enough to drive. When I got home in the afternoon I realized I still hadn’t heard about the removal of the tacks so I called one of the nurses and left a message. She called back almost immediately and said she just reached out to the nurse at the surgeon’s office who responded, “I wonder how that fell through the cracks? Tell him to call us tomorrow morning and he can probably just walk in and we’ll take care of it.”

Glad I asked. “Fell through the cracks” isn’t part of the treatment plan folks. As tightly as one hopes that the medical teams are working together, NEVER ASSUME. Throughout this entire ordeal, I’ve been telling myself, “Your whole life has prepared you for this challenge. Pull out the tools you have when you need them and you can help yourself to be successful. Yes the medical minds are hard at work saving your life, but keep your eye on the ball, missteps happen. Asking, more than once when necessary makes a difference. Self-advocacy is of utmost importance here.” If I had not pursued the extra request about removing the tacks they’d still be in and I’d be in some discomfort waiting until next week to get them removed.

Thursday, May 30, 2019

Set List: From the Heart of Me, Cold Rain and Snow, He’s Gone

First call this morning was about the tacks. “Come on over after radiation and we’ll take them out.” No harm, no foul.

I headed out to the morning treatment. No one ahead of me “in line” so I was in and out and on my way to have the tacks removed. I arrived at the hospital and within about 10 minutes was on my way back home, tack free, for my first shower in a week. That’s right, a shower, finally. Let the warm water pour over you and stay as long as you want kind of shower, as refreshing to the mind and soul as much as to the body. What a beautiful thing.

I went back out to gather supplies for supper and had a relaxing afternoon. No call from the VNA but I didn’t need them anyway, I mentioned the shower right?

Friday, May 31, 2019

Set List: Truckin’, Bertha

Today should be good, radiation appointment only thing scheduled. I headed down the highway on this nice sunny day, about 5 minutes away from the treatment center, when the phone rang. Visiting nurse, “Hi, I’m coming to by to see you this morning, be there in a couple of minutes!”

With respect for the work and commitment to all nurses and visiting nurses who may be reading this, I must say this part of the journey is getting farcical. It actually is beginning to remind me of the Milton Berle Show when someone would yell “Make Up!” and a guy would come out with a powder puff and smack Mr. Berle upside the head with it, there’d be a cloud of dust and the show would go on.

After more back and forth about how I’m not there right now, that calling me up to say you’re few minutes away, coming by to see me, blah blah blah is not going to work presently, I believe I’ve finally gotten things straightened out. She agreed to come by the house later that day, around lunchtime.

I continued on to radiation and was informed the speakers or the streaming music services weren’t working today. One tech said, “You’ll have to hum the Grateful Dead or we can have Joe sing to you.” As anyone who knows me, I believe there can always be a Plan B. In this case, Plan B was what I had been planning way back in the beginning before I knew music was an option. I pulled out my phone, brought up my music app and pressed play.

With the Dead blaring out of the speaker of my phone I asked, “Is there any reason I can’t just leave this playing on the counter nearby while I’m under the mask?

“Nope, that’ll work.”

Does it strike anyone else that an extraordinary amount of effort has gone into this whole music as a relaxation tool when all of this could have been avoided by letting me just play my own music from Day 1? Admittedly, I have fallen into this trap many times myself. The simplest solutions are often the most difficult to see. I don’t know what Monday will bring, but now I know I can always just press Play.

The visiting nurse came to the house around noon, checked vitals, asked some questions and agreed to a schedule of coming by Friday afternoons for the time being. Hopefully problem solved.

As Week 2 ends I am noticing the gradual changes kicking in. While I managed the chemo cycle better this week, I do feel a bit more spacey than Week 1. It hasn’t really gone away yet which is not pleasant.  I’ll need to inquire if there’s any way to limit it during each cycle once I’m a few days away from each new chemo treatment. My mouth is becoming a bit more sore and I’ve switched to a soft toothbrush as I probably have been going a little too hard on my gums, which in turn causes major discomfort.

There is definitely a metallic taste going on with my taste buds. It comes and goes, I suspect it will be more prevalent as the time goes on. Ultimately it is supposed to be temporary during treatment and I’m told eventually it will fade and “normal” taste buds should return some months down the road.

My appetite is all over the map depending on whether the metallic taste is present or if a certain food strikes my fancy. Today I picked at some rotisserie chicken skin, not sure I would like it, and before I was done I had eaten two wings and an entire chicken leg before I set it back down.  I’ve noticed the great healing powers of grape ice pops too, right now they are my go to for pain relief of my gums.

We got a book out of the library on what to eat while receiving treatment for cancer. It is broken down according to symptoms: Taste Changes, Sore Throat, Trouble Swallowing, etc. some great recipes and advice. The Raspberry and Cream Cheese Stuffed French Toast has my name written all over it, now that’s a honeymoon!