Week 10 - Treatment Week 5 - Getting There

Week of June 16, 2019

Just a quick update this week because there just isn’t much to report, thankfully. My symptoms from the radiation and chemo are close to as expected, though it appears that we’ve stumbled upon a miracle pain reliever, gabapentin.

Several weeks ago I let it be known that “oxy” in whatever form was not effective. The doctors decided to put me on gabapentin, a non-narcotic pain reliever and it seems to have reduced the harshness of the side effects.

While my throat is not quite as sore as it could/should be, my taste buds are pretty much gone, a short-term side effect that should eventually return over time. The current result of that is weight loss but not as bad as it could be.

I face two more weeks of treatment. Today is June 23^rd, a date that felt light years away a month or so ago.

Week 9 - Treatment Week 4 - Where Everybody Knows Your Name

Week off June 9, 2019

This week has been both profound and relatively dull. Rather than give a daily recount, I’ve decided to focus on two specific days. Monday and Wednesday were empowering and emotional days for me. To sum up the other days, Tuesday, Thursday and Friday were straightforward treatment days and were pleasantly uneventful.

At this point, I feel it would be helpful to explain the genesis of my adult relationships with doctors. In the autumn of 1987, my daughter, born with Down syndrome, was a few months old. It was recommended that her mother and I undergo genetic testing/counseling to see if either of us were carrying a gene for Down syndrome which might impact future decisions to have more children. After we were tested, the results were negative, we met with her ob/gyn to discuss the report.

We met at the doctor’s office in the early evening and he explained genetics to us using the “pair of shoes” analogy, fairly basic stuff. Our heads had been spinning for 3 months now as we acclimated to the world of Down syndrome and we were both taking in more information than we could possibly remember. When we finished our discussion, I extended my hand toward his and with complete respect and sincerity, I shook his hand and said, “Thank you for taking the time to discuss this with us, it’s been very helpful Mr. Waterford.”

As I began to loosen my grip on his hand, he brought his other hand over mine and began tightly grasping my hand, not releasing the handshake. He made sure I was looking him in the eye and he said, “It’s ‘Doctor’ Waterford.”

I was stunned. The only words I could get out were, “Oh, yeah, right.” That moment set a perspective for life as far as how I would interact with doctors. I made sure I would always show respect to them and call them ‘Doctor’ but I also vowed to never place them on a pedestal, ever. They are human like the rest of us, ego, faults, baggage and everything else.

So on Monday, I returned to the cancer center to meet with the doctors and bring them up to speed on the nightmare that was the previous week. It was possibly the most empowering moment of my life. I took control of my healthcare and didn’t look back. No regrets.

I began by telling two prominent oncologists, “Your communication amongst each other and towards me last week was completely unacceptable. You’re going to need to do a better job.”

From there I let the other members of the team know that I was going to be calling out any discrepancies and contradictions that I observed and all of them needed to step up and do better. The best part of this, they heard me. I’m pretty sure everybody knows my name there now. I hope by writing this other patients who were afraid to speak out will not hold back. Unfortunately I’ve come to realize that healthcare is no different than any other industry in terms of employees. There are those special people committed to doing a good job and others who go through their day blissfully ignorant to what is going on around them. Again, I know my naiveté continues to show, but I am who I am.

After I had my say to the team, we got back to the business of care. The most critical thing happening was my racing heartbeat. To rule out some things, I underwent a CT Scan. The results came back negative for anything serious and the mystery fever of last week may have been caused by a touch of bronchitis. I’m guessing the heartbeat issue may be related to the fact that I was perfectly healthy two months ago and now I’m in the middle of a heavy duty cancer treatment plan.

After sharing the results I was sent home and week 4 was well underway.

On Wednesday I returned for radiation and chemo, the first chemo since last week’s hospitalization. I was not only nervous, but as I shared with the team on Monday, I’ve become very emotional. I discussed this with my wife and told the team I was open to anything that would help me with anxiety. I’m not too proud to turn down help that’s available.

We discussed medications, therapy, and acupuncture. I let them know I was open to any and all. While receiving chemo, I was visited by the social worker. We talked about my emotional state and she asked if I had given myself a chance to have a good cry about my predicament. I think my response surprised her but she quickly put things in perspective for me.

To be clear, when I refer to being emotional, I’m talking about choking up and shedding tears. I’ve noticed that I’m not doing this in moments of sadness though, I seem to be wired to not cry over loss.

What is happening is I am profoundly touched by the outpouring of support and love from so many people who are in my corner. It overwhelms me. The social worker said, “You’re being touched by humanity, the love from one individual’s heart to yours. It is a beautiful thing. Embrace it.”

So I continue to feel a little sappy over the smallest gestures, even feel good stories that have nothing to do with me specifically, but I want to thank everyone for all of your kindness and thoughts and prayers. It is making a difference and keeping me feeling positive about my plight, it really is a beautiful thing. Thank you, I love you all.

Week 8 - Treatment Week 3 - 911, What's Your Emergency?

Monday, June 3, 2019

Set List: Soulshine (Allman Brothers), Wish You Were Here (Pink Floyd)

Week 3 started off seemingly “normal”. Had a radiation treatment and afterwards met with the radiation team, doctor, nurse, and nutritionist. Note the set list above, the music theme has become less of a focus as I’m pretty comfortable now with the treatment and other more critical themes are developing so I’ll refrain from explaining the glitch of the day around the tunes.

The team informed me I had lost 2 pounds and I needed to keep the weight up. I explained I’m following the plan so maybe the plan needs some tweaking. I’m eating 2,500 calories a day and losing so now they want me to take in 3,000 calories per day. We’re going to start ordering supplies for the feeding tube to supplement my eating.

I asked each about CBD products and I sensed I touched a very sensitive topic. It is against hospital policy to discuss the effects of CBD on cancer patients because there is not enough data but more importantly because of CBD’s presence in the “grey zone” under federal law.

I explained I wasn’t looking to get high, just inquiring about possible appetite enhancement. I agreed I’d take a wait and see approach before pursuing further. When the doctor got word of my sniffing around CBD, he entered the room and said, “There are 2 things you can’t do, start smoking, and you can’t miss any treatments.”

I assured him neither of those would be happening. They encouraged me to be active and to help stay in a better mental state so I went home, bought a new lawnmower and mowed the front lawn. It felt great! Not only did I feel invigorated to be active, I think it enhanced my appetite. I actually ate 3,000 calories to see what that was like, it was challenging. Don’t think I can do that every day.

Tuesday, June 4, 2019

Set List: Candy Man, Hey Little One

Just another routine day, radiation treatment and a blood draw to check numbers for chemo tomorrow. So routine was this day in fact that I came home and finished mowing the yard and enjoyed the outstanding weather. It really almost felt like a day off today.

I figured with my appetite still doing well, I would take another shot at a 3,000 calorie day. By the afternoon I was feeling well enough to give Burger King another shot. I looked up their menu and discovered the Whopper with cheese would be a great idea for the calorie and protein intake, but 2 would be twice as good. That’s right, for supper on Tuesday night I ate 2 Whoppers with cheese for a total of 1580 calories and 64 grams of protein. Don’t think I can do that every day.

Wednesday, June 5, 2019

Set List: House of the Rising Sun

Full day today. Meet with the chemo doctor for the first time since I started treatment, radiation, and chemo. The previous day’s blood draw was fine so chemo was a go. We discussed identical symptoms and topics that I had had on Monday with the radiation team. This should have been a good thing but instead became a huge eye-opener for inconsistent information from the health care professionals.

On the topic of acid-reflux

Radiation Team: Keep taking Zantac, as needed.

Chemo Doctor: Stop taking Zantac, inhibits platelet count, begin taking omeprazole

On more calories

Radiation Team: Start using feeding tube when supplies come in.

Chemo Doctor: Good to have the tube but try not to use it. Try these other supplements instead.

Pain relief

Radiation Team: Let’s see how things develop before we move to any heavy duty drugs.

Chemo Doctor: Let’s get started immediately taking gabapentin. Ease into it over the next 3 nights, then morning and night then 3 times per day. In a week you’re going to need it and I want you to be out in front of it.

I moved on to chemo and met with the nutritionist again to firm up the feeding tube supplies and shared my concern over the inconsistency of advice. She was none too happy to know about the information I received regarding the feeding tube and shared she gets very frustrated when people don’t stay in their lane. I share her sentiment.

While receiving chemo I got a call from the chemo nurse in charge who asked me about changing the Rx for a “miracle mouthwash” his doctor had just called for me. He said there was an easier way to do it with a combination of Rx and over the counter meds and it would be much cheaper. Would I be OK with that? I told him I would be if that was the recommendation. He shared there were emails “flying back and forth” over this all day and he figured he would just find out what I wanted to do to end the discussion. My confidence is not as high as I would like it to be.

By about 3pm I was back home. The week rocketed downhill from there.

Around 5 pm I started feeling chills. My wife got home and we went over the new sets of prescriptions I was given and she headed out to the pharmacy. By the time she returned I had a fever, we began monitoring it. The protocol I was told to follow was if the temp gets higher than 101.5, I need to go to an ER. By 8:30pm it was 101.5 and we headed to the nearest ER.

I was seen immediately and after a few hours I was admitted to the hospital. Although the fever was likely due to the chemo treatment the actual source could be anything so the battery of tests and rule-outs began. By 1am was in a room in the cardiac unit since my vitals were suspect. I had a couple of IVs going, antibiotics and fluids, and blood cultures were underway.

Thursday, June 6, 2019

It had been a scary and discouraging night. The morning brought no answers as to what had caused the fever, which now was very much under control (down to 99 and dropping). I actually awoke feeling much better and a hungry to boot. For the next couple of hours we had to unscramble all of the competing healthcare professionals’ angles on what to do. My biggest concern was medications affecting platelet counts and the admitting doctor had stopped all of my “home” meds so now my chemo cycle drugs for days 2 and 3 are not available, I have no idea what harm that may cause.

I began calling my oncology team members to let them know what was going on and was emphatic that they get involved in coordinating care with this hospital. For the most part things worked out and I was given all of the meds I required but once again I can only imagine what happens to patients who assume the doctors in charge at any given time have all of the knowledge they need. They don’t, plain and simple. Another concern for me was that the “doctor in charge” for me this day was a nurse-practitioner. Although she was cooperative with my oncology team and deferred to their requests, I later found out she also did not return the calls from primary care physician who called twice to find out about my situation. I did see her later in the day ad she said I needed to stay another night until they got some results, positive or negative, from the blood cultures.

The rest of the day I spent in bed, eating my meals, and being flooded with fluids and antibiotics.

Friday, June 7, 2019

Another morning of waiting to hear some news. The 24-hour mark had passed and the blood cultures were negative so far. Spent another day observing the operations of the cardiac floor and inner workings of the hospital staff, noting all kinds of HIPAA related mistakes and broken protocols, (mostly involving my situation as a chemo patient and the harm I could cause the staff who entered my room). Can’t own it though, too much going on for me.

Saw the new “doctor in charge” or Hospitalist for today, another nurse-practitioner. She said they were continuing to look at blood tests, etc. and we’ll see how things go. Also, she was making a referral to an infectious disease doctor since they’re running out of ideas.

By the afternoon I was visited by the infectious disease doctor. Nice guy, shared that today was his birthday and that his daughter was down in the ER being fast-tracked for some injury she had but she would be fine. I jokingly asked if his last name was Sullivan. We laughed.

He proceeded to explain that after looking at everything about my case and history, he was fairly certain that this incident was directly related to chemo and sometimes it causes an “Undifferentiated Fever” and we may never know the exact cause. He felt that it was wise to monitor the blood cultures further but that there was no reason for me to stay in the hospital any longer and was recommending I be released that afternoon. I would go home with some antibiotics and I might get a call back stating the cultures were showing something but unlikely at this point.

About a hour later, the nurse practitioner returned to inform me that she had spoken with the doctor but she now had concerns about a high heart rate and wanted to do more testing that would take another day. Although my vital signs had been outstanding for two days, it seems when I got out of bed to use the bathroom, my heart rate “spiked”.  I initially accepted her explanation but had a feeling that this was moving things in a somewhat unnecessary direction in terms of the immediate picture.

I called my primary care physician and told him what was going on. He sighed and said he agreed, it seems that she is moving into territory that was not necessary tonight. He said he would call her but if I really wanted to leave I would probably need to sign an AMA form.

“Do you know what that is?” he asked.

I replied, “I assume it is a release of liability form for the hospital.”

“It is, ‘Against Medical Advice’.”

He called the nurse’s station and eventually spoke with the nurse-practitioner. He called me back and said he had a good conversation, but she would not agree to release me without an AMA form. Otherwise I was there for another night.

So I have 2 doctors who think I can go home, but a nurse-practitioner on a mission overruling them. I think this officially gets filed under the medical world has turned upside down.

This was not an easy decision. In the end, I decided I would stay one more night but if nothing was found, I would invoke the AMA tomorrow to get out. My biggest concern was, if I did sign an AMA, would I still get the antibiotics to take home? No straight answer to that question was ever resolved. I’m a little bitter to have been put in this position. I’ll be processing it for a while I’m sure.

My nurse that night was quite helpful, I fell she intimated that I should sign the AMA and go home but obviously couldn’t come out and say it. She was my age, knew both doctors involved very well and was confident in their assessments. Completely aside from this situation, she also shared with my wife and me that she understood our struggle with the decision and that “when I see a couple like you two, it renews my faith in love.” Even through this I know I still the luckiest man alive.

My wife stayed with me the first 2 nights. Tonight we agreed she should go home and get a good night’s sleep because I would be home on Saturday.

I’d like to say Friday night was uneventful, but it was not. I could hear some very inappropriate conversations amongst the overnight staff that would make HR cringe. Later, an elderly gentlemen in a room down the hall passed away. I was awakened to a commotion around 3:30am, lots of “Code Blue” alerts and eventually heard the words “flat lined” in a phone call from the attending physician to a family member, time of death, 4:02am. It was a sad night.

Saturday, June 8, 2019

Another morning of negative results for everything including the new tests for heart issues, I’m going home one way or another. The Hospitalist today is a doctor, “very reasonable” according to m nurse Joe, a former residential contractor who I had a lot in common with. Joe did his best to steer the doctor to my case as soon as he could.

The doctor came in to talk to me around 10am and told me he agreed with the infectious disease doctor from yesterday, this was an incident related to chemo, I did not have a heart problem and I could go home. “Going home” took about 2 hours to happen but nurse Joe finally came in around 12:30 and said, “Your hostage crisis is over! You can get out of here!”

We were home around 1 and ready to end this exhausting week. I had lunch while my wife filled more prescriptions and ran a few errands. I would wait until she returned to take a shower, intending to chill in the family room until she returned.

So what about this post being entitled, “911, What’s Your Emergency?”? Yeah, there were plenty of emergencies and crises to deal with throughout the week, was that it? Um, no, it wasn’t. You see, after all of the twists and turns the universe sent our way this week, it apparently wasn’t challenging enough.

As I settled into my nice comfortable basement, opened the windows to let in the fresh air, I noticed a car stopping across the street. As I watched, the driver, an elderly man, opened the driver’s door, and I could hear screaming from the passenger. The driver reached in and tried to pull the passenger out of the car onto the road, while cars were passing. I knew then there was a 911 call in my future. As I continued to watch, the man shut the door and slowly walked to the neighbor’s door and rang the bell. “Please answer door” I begged silently. No one answered.

The man looked across the street and I knew he was headed my way. I tried to intercede from the window and yelled out to ask him what he needed. He was clearly disoriented, a little hard of hearing and just out sorts. He came up the driveway and I was able to get his attention to come to the window. I again asked what he needed and he said, “My 24 year-old grandson has autism. He had a seizure and started attacking me while I was driving, I had to pull over, can you call 911?”

“Of course I can,” I replied. I explained that I know he had no way of knowing this but I had just gotten out of the hospital, was a cancer patient and there was no way I could come in contact with people right now so I would help him by phone, but I would be staying in the house. I further told him I was very familiar with adults with disabilities and we would get through this together. We got the response needed and within a few minutes the town’s emergency responders were on the scene diffusing the situation.

That’s about the time my wife was retuning to the house. That’s right, her worst nightmare. She left me home for 15 minutes and the town’s emergency responders were on the scene. I can’t imagine what she must have been thinking as she approached. She came into the house and all I could say was, we live inside a Lifetime Channel movie

I missed 2 radiation treatments this week so I don’t know how to measure the treatment weeks at this point. I know there are many challenges to come still, hopefully week 4 will be a better than this week.

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!