The Reed Report - Phil's Medical Journey

Wednesday morning the 30th (one day earlier than normal because my doctor was taking the next day off) we left home about 7:40 AM. On Tuesday we got at least 10 inches of snow and Denise cleaned half the driveway the evening before. It was really hard not to help her shovel the heavy wet snow, even though I am weak, but the doctor gave me explicit instructions not to shovel snow. In the morning, our road was not yet plowed on our side before we left, though it had been plowed on the other side. The rest of the roads were plowed and fine.  We reached the Cancer Center in the hospital shortly after 8 AM, which turned out to be the beginning of a long day. As usual, they drew blood for labs, flushed my PICC line, and changed the dressing on it. Then we waited to see the doctor. And waited. And waited. What was supposed to be a 9:20 appointment with him turned into 11:20. He said that he saved me for last because I was his buddy. I told Denise that it was probably because he knew that ...

As usual, immediately after chemo I felt good, though this was not to last. And once again the Neulasta On Body (to boost my white blood cells) worked just fine the day after chemo. Thankfully! The first couple of days after chemo, I had trouble with nausea. Even though the medicine that they gave me to counteract it helps, I am usually not feeling 100% with it. I was glad that the nausea cleared up before day 4, because in the past it has lasted longer. Since this is the fourth time around, I am fairly used to the cycle, and even though every time is not identical, there is a general pattern. The first 7-10 days following chemo I feel somewhat lousy (varying degrees) and normally around day 10 I am getting back to more "normal". Then by day 14 I am pretty much feeling "normal". Not my "normal" before I got sick this past summer, but "normal" for a chemo patient. On day 6, the 17th, one week following chemo, we went in for labs, to flush my PICC ...

Thursday morning the 10th we arrived at the hospital before 8 AM, so we could see the doctor before having chemo. They took my vitals, which we all very good, and weighed me - 160 pounds. I feel that I eat all the time, so I was surprised that it was not closer to 170. And my Ukrainian friends are not shy about telling me, nicely, that I need to gain weight. (Just like they were not shy in telling me in 2014 that I was fat.) I just tell them that I will be able to work on gaining weight and getting stronger once chemo is over. We then waited to see the doctor, who was seeing patients in the hospital. My blood work from the day before came back fine, and the urinalysis also was good, so I expected to get my nephrostomy capped. After seeing him, we headed to the infusion lab for chemo. This time I got a room with a bed and a private bathroom, rather than a cubicle with a recliner. It was more comfortable for me, but Denise missed having the window seat for lying down. Chemo is in progres...

No matter how long I am in the hospital, I am always glad to be home and back in my recliner. And I always eat better and eat more at home, as well as sleep better, because my sleep is uninterrupted.  Without a fever, I felt better. Also, my improved hemoglobin helped me feel better. This time at home, I noticed that my strength improved. I was able to dress standing up, rather than sitting on the bench in the bathroom, as I had been doing. Climbing the stairs was easier than it had been. This may be temporary, because chemo always seems to wipe me out, but it was good progress. Hope and I decided that it was time for her to get a different computer, so I helped her find one, ordered it for her, and will help her set it up when she is here for Christmas. We are excited that she is planning to visit us for a long Christmas weekend. As always, my only assignment during this time at home was to prepare for my next round of chemo, which means working on getting stronger. This includes ...

After going through the process of being put in a room (when the nurse asks me if I wear dentures, etc.), I was finally able to go to sleep. I wanted to say, that since I was just in the hospital less than three weeks ago, please use my answers from last time. Ha. But I knew that would not happen. Denise was able to visit me from 1 to 3 every afternoon. We noticed how quickly two hours go by compared to the four hours we had previously. Many hospitals do not allow any visitors, so we are grateful that she could visit me at all! On Thanksgiving Day, her family waited to have dinner until after our visit was over, instead of at 1 PM as they had planned. We took a "selfie" for Thanksgiving When I saw the doctor on Thursday, I asked what the criteria were for me going home. She said that I needed to be fever free for 24-48 hours. Out of my control, but now I know what they are looking for. And I missed turkey dinner at the hospital. They served it for lunch and stopped serving it...

When we got to the ER about 6:15 PM, we were once again glad to see just a few people waiting. However, this time we waited three hours until about 9 PM for an ER room, even though they told us when they took my vitals shortly after we arrived that we would be next, barring an ambulance or air care (helicopter) coming in. I forgot to take Tylenol before we left home, so while we waited I had the chills and just wanted to sleep. If I had asked someone for some, they may have done so, but I was not expecting to wait nearly three hours. Once we did get into the room, they got busy right away. Blood tests, blood cultures, EKG, chest x-ray, and urinalysis (from my nephrostomy bag) - all this to determine what type of infection (or infections) I had, because normally an infection is the cause of the fever. The cultures are up to a 48-hour process (or sometimes longer). And they gave me some Tylenol. Once again I was neutropenic, a common problem with chemotherapy, which meant that I had a fe...

As usual, after chemo I felt pretty good. And it is always good to be home. Other than going out the next afternoon to get my Neulasta shot (to boost my white blood cells), my next planned visit to the hospital was on the 25th for labs and to change my PICC line dressing. Each and every day I was so grateful to be healthy and at home. This round brought with it more trouble with nausea than the time before and sooner than day four. Thankfully, the medicine they gave me takes care of that, though not always right away. Wednesday morning the 25th, day 6 after chemo, my temperature was slightly elevated (ranged from 99.6 to 100.0). I took some Tylenol because I also had a headache. My temperature dropped back to nearly normal before we went to the hospital for labs. And I felt good at that time - with no more headache. After we got home and had lunch, I took a nap for a couple of hours. And I did not want to wake up. Then I watched a movie on TV, "Free Birds", and fought sleep m...

Thursday morning the 19th, one week delayed from the original plan, we had to be at the hospital by 7:00 AM for labs, then to see the doctor about 8 AM, and start chemo after 9 AM. I find it difficult to get up so early on chemo day, but you do what you have to do! While I got my blood drawn for labs close to 7, everything else was delayed. M y vitals were good and later my blood work came back normal as well. My weight is increasing, so that is a good thing.  We waited to see the doctor well past 8 AM. Then we were ready to start chemo after 9:30 AM. Flexibility and patience are very important in these situations! Outpatient chemo is easier than inpatient chemo and includes the bonus of being at HOME! My outpatient chemo is just part of one day. They start out with some pills, then give me a series of different drugs intravenously - some are as small as a shot, others take just 5-10 minutes, and then there is the long one, which takes several hours and also causes baldness. I was ...

How glad and thankful I was to be home and no longer in the hospital. I started eating better almost right away and my recliner felt so good compared to the hospital bed. And with my white blood cell count back to normal and my hemoglobin improved, I was feeling much better. Of course, "better" does not yet mean that I am ready to go back to the gym and workout like I did earlier this year. It just means that I am more easily able to do the basic things of life - that is, take care of myself. I am so grateful that, other than following the first chemo treatment, when I was so weak and it was difficult to care for myself (even to get in and out of the recliner, or the hospital bed), that I have not had any trouble since then. When I am home, it is nice in the evenings to be able to watch something with Denise - a movie, TV show, or football. My breakfast at home consists of Cream of Wheat and a chocolate Carnation breakfast drink.  I normally read my Bible after that,  unless ...

The first few days in the hospital, I started feeling better than when we came to the ER on Sunday, though I lacked energy. I enjoyed my single room very much. They continued to try to determine the source of my infection(s). One blood culture came back positive for strep, so they decided to remove my PICC line, even though it showed no signs of infection. It was just a likely source, they said. And they continued to give me IV antibiotics. Because of the unknown infection(s), they were not sure when I would be able to go home. This was an ongoing problem throughout my stay in the hospital. I also had no energy because my hemoglobin was quite low several days (7.0-8.2). Had it been any lower, I would have required a blood transfusion. Wednesday the 4th was a rough day. (I tried not to be too graphic with this, and yet transparent.) I had been dealing with constipation even before coming to the hospital, and we were trying medications to help with that, but nothing was working. They cou...

When we got to the ER, we were glad to see just a few people waiting. However, we learned that this does not necessarily equate to getting in right away. We did get into an ER room just after 10 PM and decided that waiting for just over an hour was not too bad. I told them there that I was becoming a "frequent flyer" in the ER because it was my 4th time in a month and a half. We are so grateful for your prayers and encouragement, especially when things do not go as we would have wanted or desired! They confirmed my temperature of nearly 102. And they ran three sets of blood cultures to determine what type of infection (or infections) I had - which can be up to a 48-hour process. Once again I was neutropenic, a common problem with chemotherapy, which meant that I had a fever of more than 100.4 along with an extremely low white blood cell count. They started me on intravenous (IV) antibiotics almost immediately. Waiting in the ER room We knew that they would be admitting me, so...

As I mentioned in the previous blog post, my Neulasta On Body failed. Denise and I went in on Wednesday morning, so I could get the shot manually. Without it, my white blood cell count would take longer to recover. My uncle Larry shared with me the devotional from "My Utmost for His Highest" by Oswald Chambers for October 31st. It was very thought-provoking and deep. Matthew 17:20, "If you have faith as small as a mustard seed...nothing will be impossible for you." "We have the idea that God rewards us for our faith, and it may be so in the initial stages. But we do not earn anything through faith - faith brings us into the right relationship with God and gives Him His opportunity to work. Yet God frequently has to knock the bottom out of your experience as His saint to get you in direct contact with Himself. God wants you to understand that it is a life of faith , not a life of emotional enjoyment of His blessings. The beginning of your life of faith was very ...

Monday morning the 26th we had to be at the hospital by 7:30 AM to be ready for chemo by 8 AM. That was rough for me, because I have normally been sleeping until after 9 AM. As it turned out, and as is often the case, I did not even get my vitals checked until after 8 AM. It seems that this was most likely because it was my first outpatient chemo treatment, but any other explanation would be just as valid. The first step was checking my vitals and getting some blood work done. All my vitals were good and later my blood work came back normal as well. One concern was my weight - 153 pounds. That is nearly 20 pounds less than I was in July. Quite honestly, I am nothing but skin and bones, which is why I am trying to focus on my eating. It is not easy! (Sorry, but we forgot to take a picture!!) Outpatient chemo is easier than inpatient chemo. Inpatient is 4-5 days which includes 88 hours for just one chemotherapy. Because my cancer does not have the "bad" genes in it, I do not ne...

Once again it was very good to be out of the hospital and back home in my recliner. In my first few days back, because I was feeling better than I had my last two times at home, I took the time to get "settled". Denise had the things that I needed near my recliner, but I organized them to make it more comfortable for me. Thankfully, I felt fine and stayed healthy during my time home. I slept well, actually sleeping nearly 12 hours every day. I had a low-grade temperature a couple of different times, but it stayed below 100 and dropped back to normal quickly. The remainder of my swelling disappeared - and I turned into a skinny old man. When I looked in the mirror, I saw my Father. The bigger challenge for me during this time was unexpected - it was dealing with the mundane life. I had been in the hospital three different times. Now I was simply at home, trying to get stronger. And I was there longer than I had been in any one place for more than a couple of months. It took me...

Monday late afternoon I was moved to the COVID floor of the hospital. Not exactly where I expected to be (OK, honestly, the last place I expected to be), coming back to the hospital this time around, but here I am!! And I do not have any idea how long I will be here. One doctor talked about a week, plus or minus. At least I have a private room here, though the view (another building) left a lot to be desired. Originally, we were told that Denise was unable to visit me in the COVID unit. Later we learned that it was possible for her to visit me for one hour a day, but because she and her Dad had some COVID symptoms, we opted for her to stay home. I really felt lousy, especially the first day. I woke up Monday night just after 1 PM completely drenched. My fever broke, so I called the Nursing Assistant and asked for clean bedding. While I was at it, I gave myself a sponge bath. And that was the last of my fever. Thankfully. Over the next few days I continued to improve and started feeling...

I went to the ER the other day, just because I had nothing better to do....said no one ever! Denise and I drove to the ER, fully expecting that I would be admitted to the hospital again. They would not have recommended that we go in if that were not the most likely scenario. We understood that even before we called that morning. When we arrived to the ER, they were expecting us, and immediately took us back to an ER room. There they did the usual tests - EKG, chest x-ray, blood work, and a COVID-19 test. They were concerned about my condition because I am 7 days post-chemo - which is when my immune system is at its lowest point, nearly non-existent, meaning that my white blood cell count, including my neutrophils, were nearly 0. They diagnosed me with neutropenic fever, which means I had a temperature of 100.4 or above with low neutrophils. This is actually not uncommon for those undergoing chemotherapy. They confirmed that I would be admitted and said that I just needed to wait for a ...

Since I really wasn't home very long between hospital stays (not even 26 hours), I really never got to feel "settled". So now I should be able to do so, right? When we arrived home, we discovered that the TV we ordered had arrived. Since Donna's husband had run new wires to move DirecTV from another room to the family room, they came in and helped Denise set up the TV (it was so hard for me to not be able to do that myself), so they could verify that everything was set up right with the satellite. We had a little trouble figuring out the TV setup, but the folks at DirecTV were helpful and soon we verified that everything was working well. When I came home it was four days after chemo, and it continued to do its job to kill my immune system as well as to work to reduce the swelling in my lymph nodes and body, though that was not obvious yet. I had regular issues with feeling nauseous, but the medicines that they gave me helped to take care of that. In addition, I was q...

They actually moved me to a private room (this was a bonus!) on the Hematology unit mid-morning. But it was not until mid-afternoon that my doctor finally came to see me and explained why they kept me for observation longer. And then I understood perfectly. Because I had just finished chemo on Monday, all my "good" counts were falling and my immune system was becoming more and more compromised. This put me more at risk for other (possibly dangerous) pulmonary issues (hence the private room) and, rather than risk sending me home, they figured that it was wiser to keep me in observation for a while. I made sure that the doctor knew that I was not pleased that it took so long to receive an explanation, but also that I totally understood and was on board. Denise was able to visit me Wednesday afternoon from 1 to 5, whereas normally this is not the case when someone is in such a private room for possible pulmonary issues. I was thankful that my nurse had seen fit to get approval f...