After another very long week at the hospital, I am finally back in my own house, in my own bed with my own family. This is the week it has been.
Sunday, Aug 25 was a good but tiring day. In the end, the nurse was able to shift the schedules of my IV antibiotics so that the 6:00 PM dose was being taken at 4:45. This allowed me to get disconnected and packed up to go see Cassy’s soccer game. It was a somewhat important one as it was a Shield game. The league runs a tournament within the season called the Shield Cup where teams compete. Games are played throughout the season and it is a “win you move on, lose you’re out” style of tournament. Cassy’s team had won a few games to get to this point, the semi-final, so this next game was going to bring them to the finals. Cassy and Isa got a ride to the game with Li while MA came to pick me up from the hospital to go to the game. It was at our home field so it was not that close to the hospital and further East of our house. I packed up some warm clothes, dawned my mask and headed down to meet up with MA and Shelly who were waiting for me at the hospital main entrance. We drove to the field where I met up with Li, Richard and Isa to watch the game. The game started great as Cassy’s team was dominating and scored two quick goals. However, as the game went on, they struggled to maintain the lead, partially due to some bad officiating. The other team scored their first goal on a penalty kick that should not have been called and then scored another quick one to tie the game. Two more goals were scored in the second half by the other team and in the end Cassy’s team lost 4-2. It was the first game of the season that I was able to watch. Too bad they lost but I was still happy to be there, even if I looked like a very sick patient with my mask and blanket. With the game done, we all headed back to the hospital to drop me off. I needed to be back before 9:00 PM for my next dose of antibiotics. I got in the room by 8:45 do see that dinner was still waiting for me. It did not look very appetizing and since the others were also hungry, they all went to McD’s to pick us up some food while I got prepped for the evening. The family stuck around for a while and left after 10:20 PM while I started getting ready for bed. It was another late night for me which was tough as I was still trying to recover from the previous two late nights with the IVIG.
Monday, Aug 26, was a day to forget. Nothing seemed to go well for me. As always, it was an early start with nurses coming in to hang more antibiotics, draw blood and do vitals. Breakfast came around 8:15 and my Timmies around 9:00. I knew it was not going to be a good day when this morning’s coffee came with no cream. I am not one to be able to drink my coffee black, not even with milk. I need it to be very creamy with at least 10% cream but it is so much better with Timmies 18% cream which was not there today. Li was very kind to not only bring me my coffee but she also was able to find some whole milk for my coffee. I was also suffering from vertigo today as each time I moved my head too quickly, I needed to wait for my eyes to catch up. Also, I had a few times where it felt like I dropped about 10’ into the ground even though I was firmly on my bed. This issue was causing headaches and a bit of nausea which did not help it make for a good day. With the struggles I was having with the vertigo, I decided to watch some TV in the morning as the headaches were not letting me do much else. Of course, this morning, the hospital wifi had to be shotty so my connection to the internet was not reliable making it very difficult to watch anything, let alone use the internet for simple things. Around 11:30, the nurse came by to give me my IV antibiotic. This one normally takes about 1/2h to drain so when 12:00 came I looked at the IV bag to see how much was left and noticed it was still very full. Confused, I tried to figure out what was going on. I discovered the issue once I looked at the pump and saw that the clip just above the pump was clamping the line so nothing was going through. For some reason, the pump did not complain which was odd as it often complains about “upstream occlusions” that don’t exist. I hit my pager to call over a nurse. When a nurse came by, I explained the situation but she did not do anything as she wanted to talk to my primary nurse first, who was on break at the time. Again, I waited for something to happen. I was hunched on the end of the bed looking out the door waiting for someone to come by to fix this when I saw my nurse. She was not coming to see me but I was able to stop her to get this fixed. She finally restarted the pump and I was finally getting my 1/2h IV over 1h later than it was supposed to start. I did have a bright spot on this day. After finally finishing the IV, I was disconnected from the IV line and shortly there after I had a visit from Ann. She was on my softball team in the past but is not playing this year. She too works at the hospital in the lab (this will be an important point later). She had taken this year off because she knew early on that she would not be able to make the playoff weekend. It was great to catch up with her as I had not seen her in a while. As we were chatting, my nurse dropped by so I asked if she had my blood results for the day. She said she was still waiting for them to come. This seemed odd as normally they only take about 1h to do and it had been over 4h since the blood was taken. Ann said it should not have taken the lab (where she works) this long to process, even though they had one machine down today. Naturally, the doctor came by while Ann was still there. He did not want to interrupt and said he would be back later in the day. Shortly thereafter, Ann went back to work. Ironically, both the nurse and Ann mentioned around the same time that the CBC (Complete Blood Count) rec was not ordered today by the doctor so none were done. This was very odd as these results are the reason why I am in the hospital. We are all closely monitoring these results to see if I need platelets or red blood transfusions, and see how my immune system is building up. The nurse proceeded to call the doc to get this ordered. It took a really long time for the order to come it. The afternoon sunshine was really nice and my plan was to spend some time outside while I was disconnected from the IV. I did not want to leave until the doctor came back as it was very important for me to talk with him about my vertigo symptoms to see what could be done to address them. I waited all afternoon for him to come and he never did. MA showed up around 3:00 and she too wanted to go outside and I said I needed to wait. We has some charcuterie that Rick had brought me over the weekend as a snack in the afternoon and while we were eating it we got some more bad news from the nurse. I needed to change rooms with another patient who had to be closer to the nursing station. I was still going to have a private room but now I was going to be in the corner of the ward further down the hallway. As I was in better shape than the other patient, they kicked me out of my room first so that they could clean it and move the patient to this room before working on my new room. MA and I proceeded to the patient lounge to watch some TV while I prayed that dinner would still find me there. Happily, I was able to get my dinner in the lounge. I was glad that I brought with me my bed table so that I has something to eat off of. After dinner, my nurse came by to draw blood. She finally got the rec from the doctor to do the CBC tests. Also, after she was done, I finally got to the see the doctor at 6:30PM. He also met us in the lounge and did his assessment. Not the ideal place to do this but it worked. We finally got into the new room by 7:00. At this point, I was very stressed from moving as it had been a rough day and my brain was struggling with the new orientation of the room and where all my stuff was going to go. This room was slightly smaller and, for some reason, had only one free outlet that needed to not only plug in the IV pump but also charge my electronics. Luckily, I remembered seeing a symbol on the bed which suggested that there was an outlet on it. I struggled a little bit to remember where I had seen it but I finally found the symbol and then the outlet at the foot of the bed. I connected the IV pump to it which, in the end worked out well as I could pretty much go anywhere in the room, including the bathroom, without needing to disconnect it. Now that I was in my new room, it was back to the routine. My vitals were taken but this time my blood pressure was really high. I was still stressed by the new room so it was affecting my results. This continued to be the case for the rest of the week which was odd as my pressure was good the previous week, in the other room. We suspect that the Vancomycin was causing the higher blood pressure. By 9:00PM I got hooked up to one of my IV antibiotics and shortly there after MA decided to head home for a good night’s sleep. I wished I could have gotten the same. After this course of antibiotics were done, the nurse came by to hang the other antibiotics around 11:00 however, this time, my IV was not cooperating. I had been complaining that it was hurting since the Vancomycin was started on Friday. It was hurting my vein but the IV itself was still working well so I did not want to get poked again, especially given my weakened healing capacity. However, once this IV was started, it seemed it was leaking so we decided to start a new line. The nurse searched for a good vein and found a few however when she went to poke them, the veins would roll out of the way and she could not get a good line started. She gave up after two tries and called over a colleague to try. She was able to get a good line on the first try but it was now almost midnight and I was still not sleeping. All day, I was wishing for the day to be over and instead it lasted as long as it could. I finally went to bed but did not sleep well as there was a lot of commotion in my area throughout the night.
Tuesday, Aug 27, was a very tiring day given how little I slept. When I was moved to this new room, all the nurses were telling me how quiet this area was however this was not my experience so far and mentioned this to my nurse for the day. Later on, she did hint to me that she knew why I had troubles sleeping last night but could not go into details and I did not ask questions as I suspected she could not say anything anyway due to patient confidentiality. For a change, not only did the resident doctor visit me but also the hematologist covering the floor for the week. I showed them the progress I was making with my infections and the hematologist suggested that there could be a way where I might be able to get out of the hospital however I would need to get down to only taking one IV antibiotic. This was the first time that a plan to get me out was discussed. There is hope that I will get out soon. I tried to nap in the morning so that I could catch up on some sleep. It was very difficult to do as it was very noisy in my area as my neighbor seemed to have a lot of guests. I received a visit from one of my bandmates, Carole, around 11:00. I had not seen her in a few months so it was great to catch up. After lunch, I also got a visit from Shanda who is the local coordinator of the Leukemia and Lymphoma Society. I had gotten to know her very well last year with my Laughter 4 Cancer fundraiser and we have been in contact ever since. We talked for a good hour before she needed to leave. Both these visits really helped pass the time away. Cassy had another soccer game tonight and I decided to plan the day accordingly to get another hall pass to get out to see it. Again, my meds schedule was rearranged to accommodate this. I spend most of the day lounging and wasting time by either surfing the internet or reading. I did make it outside to do some walking around the park next to the hospital. Before heading to the soccer game, I was able to eat dinner and once done, MA signaled that she was downstairs to pick me up. I grabbed my stuff and my mask and headed down to meet her and Shelly as we headed to the game. What was nice about this game is that it was very close to the hospital. Once at the field, we met up with MA’s mom to watch the game. Ironically, Cassy’s team was playing the same team as for the Shield Cup on Sunday however, this time, we were short a lot of players and only had one sub for the game. This match was much tighter with the other team scoring first. Late in the first half, one of our players got ran into hard but no call was made on the play. Our player never returned for the rest of the game which meant the team had no more subs for the final half. Mid way through the second half, we tied the game on a nice shot that got kicked in by the other team. With about 3/4 of the game left, Cassy was sore from a previous injury and stopped playing putting us down a player. In the end, we were able to hold them off to keep the game tied. After the game, MA and Cassy brought me back to the hospital where I was back to the IV routine. They did not stay long as I wanted to get to bed early enough so that I could catch up on my sleep.
Wednesday, Aug 28, was a better day. MA took the dog to the vet that morning which was good timing as Shelly was able to update her vaccines. This was important for us as we needed this to allow her back onto the floor. Though, we had our letter stating that she was a therapy dog and followed the hospital policies, this floor also required an updated vaccination list on file before she would be allowed on the floor. When MA and Shelly showed up in the ward, they were swamped by the nurses wanting to see and pet Shelly. When they finally made it to my room, we worked on getting Shelly officially allowed on the floor. Earlier in the morning, I had called for a nurse to disconnect me from my pump as I was done with it for a good 6h. As most of the nurses were busy, the assistant floor manager, who was also a nurse, came by to disconnect me. This was a good thing as I was going to be talking to her a lot today. When Shanda was visiting me the day before, she left me a huge loot bag that included plenty of treats and a book. The book was one that I had already received a few months earlier that was about cancer survivors and their stories. I decided to donate this book to the ward and she would be the one to help me with that. Before she left the room, I handed her the book, still wrapped in plastic, and she printed off some labels to put inside to ensure that people did not leave with it. With that done and with Shelly now on the floor, I was going to be working with her again to get Shelly certified. We handed her Shelly’s vaccination records to put on file and she handed me a form to fill out to also have on file. We chatted with her and the other nurses to tell us if other patients would like a visit from Shelly. We have always been interested in getting Shelly certified as a therapy dog not just for me but for anyone in the hospital. Each time we took Shelly out of the room, she would get stares and we would ask the people if they would like to pet her. Everyone was excited to do so and commented on how well behaved she is. One person, in particular, got some extra special attention from Shelly. It was my next door neighbour, Erin, who moved in on Monday. She is not doing very well as she is battling stage IV cancer and was on morphine most of the time she was there. We found out from her family that she was admitted on Monday because she was having seizures (hence all the action on Monday night which did not allow me to sleep). MA first asked the family if it was OK if Shelly came to visit Erin as it was clear that Erin wanted to see her. From then on, Erin would receive multiple visits from Shelly and each one would cheer her up. Even my nurse said it was a great thing we did in letting Shelly visit with Erin. Oh yeah, one very important thing happened as well today. My blood counts went up with my neutrophils doubling to 0.2, my white and red blood counts increasing and my platelets staying steady after my transfusion on Monday.
Thursday, Aug 29, was another good day. I was able to get out to walk more that day as I felt a bit more energetic. My blood counts were still continuing to improve, with my neutrophils now at 0.3 ,and my other counts staying steady with the exception of my platelets which had dropped to 12. They were still above 10 so no need for a transfusion yet so all good. Shelly and MA came by in the early afternoon for a quick visit. They were not able to stay too long as Cassy had another soccer game that night and MA needed to get back for it. This time, I decided I was going to stay at the hospital as I was still very tired from the lack of sleep. Shelly visited Erin some more and we got to learn more about her. She is a 19 year old musician that is incredibly talented. On this day, her family brought in her electric piano and she was able to play and sing with her cousin on the guitar. It sounded great and she was feeling really well that day. Her father mentioned to us that she has her own YouTube channel and even had the chance to play at Bluesfest a few years ago. Naturally, she was getting a lot of visitors each day which made it a little crowded around my room and a bit noisy. I was not going to complain as she needed them more than I needed my rest so I would simply shut my door more often and allowed them their time with her. MA and Shelly left early afternoon to get ready for Cassy’s game while I planned on taking it easy and going to bed early. My doctor came by again to let me know that he was going to change my IV antibiotics. Instead of having both the Pip Tazo and the Vancomycin, he was going to change them both to using just Ancef. This means that I would only have one IV during the day, every 8 hours. To my surprise though, I got a visit from Kevin, one of my teammates from the Thursday night hockey. I had not seen him since March as he does not play over the summer. It was fun to talk with him and catch up on what happened over the summer. After Kevin left, I got my first dose of the Ancef. I was expecting to have a bag hanging on my IV pole as I had with the other drugs however, this time, it came in a syringe and the nurse simply, slowly pushed it into my IV port on my arm over 5 min. This was great as it meant that I would not be attached to the IV overnight! Hopefully, this will allow me to get some better sleep.
Friday, Aug 30, brought with it some good news. The hematologist was by and mentioned that they are working on releasing me either today or tomorrow. They still had some logistics to work out so it was not sure if I could get out on Friday but it was almost guaranteed that I would be out by the end of the weekend. This news was tempered as my belly was very upset and I was battling some diarrhea throughout the day. This was causing a lot of noise from my intestines. MA and the family were planning to visit later in the afternoon and we were all going to have dinner together. Dave was also going to come by as well but I cancelled that visit as I was not feeling well enough. The family showed up around 4:00 PM. We sat around for a little while before we headed out to pick up some takeout. This was great for me as the hospital meal that night was not my favorite so I did not mind skipping it. We brought the food back to the hospital and we ate it on the picnic tables outside the hospital. On the way back from the hospital, MA got a call on her cell phone saying she had an appointment tomorrow at 3:00PM at the hospital. We were both very confused as we could not figure out why she would have one on a Saturday. In the end, the call was actually for me and it was to let me know that they were going to set me up with an IV pump that would allow me to get my drugs at home. It is finally happening, I am on my way home!
Saturday, Aug 31, going home day! MA and Shelly arrived in the morning to visit with me and the rest of the floor. It was discharge day but I did not know when it would happen. Rick also showed up for a visit around the same time as MA. Before they all arrived, the weekend hematologist said that I was going to be discharged today as, in his words, “I look too good to be here”. I was not sure if he was trying to pick me up and take me to dinner. J MA, Rick and Shelly all waited to find out when I was going to be officially paroled. Our nurse was checking in with the other ward, the one that was going to set up my pump, to see when they would be ready for me as well as checking with the pharmacy to see if she would need to give me my 2:00PM antibiotics. My lab results came back for my blood and though I had positive news on my neutrophils count, now at 0.5, I needed to get a platelet transfusion. She ordered it up and I got it infused while I waited to be sent home. We finally got word after lunch that they were going to take me early so the nurse walked us over to the other ward to get my pump. They set me up in a room while the nurses took my vitals and checked in with pharmacy to see when they could expect my IV bag. We were not there long as the nurse was able to connect my pump to my IV line and get it programmed. While there, we asked what their rules were for therapy dogs. The nurse mentioned that she did not know but the floor manager was away until Tuesday. Her opinion was that we could bring Shelly on Sunday and Monday, and then deal with the manager on Tuesday to see what the policy was. Once I was all attached, I put on my fanny bag with my IV pump and we all headed for home. Had a relaxing night at home with the family and got a good, long night’s sleep.
Sunday, Sep 1, I got up out of my own bed and started the coffee pot. I read yesterday’s paper with my coffee and caught up on my emails. MA made brunch for the family and it was the first meal in two weeks where we were all together at home. Afterwards, I took a shower and got ready to head back to the hospital to check in with my parole officers. MA, Shelly and I arrived at the hospital around 2:00. The nurses seemed not too busy and took their time to do everything. Knowing that it would take some time for my blood results to come back, I had expected that they would draw my blood early to get it out of the way. This was not the case. They drew the blood around 2:30 and then waited for my IV bag to come from the pharmacy. It was closer to 3:30 when the nurses finally replaced the IV bag. We still could not leave yet as we needed to wait for the lab results which took really long to arrive. I overheard the nurse call the lab at 4:00 PM to get the results directly from them. She wrote them down on a piece of paper and it was worth the wait. Obviously, my platelets were up due to my transfusion yesterday, my red blood cells were still steady but, more importantly, my neutrophils and my white blood cells were up again with the neutrophils jumping by 0.2 to 0.74! Once they hit 1.0 I can stop taking the Grastophil injections and if they can reach 2.0, I will have a normal immune system. Once we had these results we were able to leave so I wanted to visit my old ward one last time. MA had already been by twice today with Shelly but I wanted to come by as well. After this visit, we headed home where I made dinner (with MA’s help), It was the first time in a long time since I had the energy to do it and I missed it. I was a bit out of practice as my timing was off but I was able to recover and we had a great dinner. Afterwards, MA pulled out some old photo albums and we all looked at how much we have aged and laughed at how we used to look. That night, I got calls from two of my aunts. My aunt Loreen called to check in on me. She lives in Miami and she did not know when the next time she would be able to call as they are preparing for hurricane Dorian to hit later this week. I hope she is ok and gets though it without any issues. My aunt Rita from North Bay also called me. I had not spoken with her since April. I caught her up on my treatments and how I was doing. Given that two of my three aunts on my dad’s side called me, I was just waiting for my aunt Annette to phone as well! I was not expecting it to happen but tonight was filled with the unexpected. I retired early and got some much needed rest.
The plan for the upcoming week is to continue to go to the hospital daily for more IV bags and blood work, and depending on their results, maybe doing some transfusions. I have an appointment on Friday with my hematologist in Toronto that I am trying to get out of. I am not sure how I can make it happen given I need to get these antibiotics every day and am not feeling well enough to do a 10h round trip drive there. I am hoping that my trial nurse will say that I do not need to go and that I can get the doctors in Ottawa to provide the info they need. It is just a routine check up which means they will just do vitals and blood, examine me and ask how I am doing. This is all stuff I can do here. To me, the next appointment in Oct is more important as I will be doing a PET and CT scans to see how the tumors have shrunk since the treatments. Other than that, I plan to take it easy at home and maybe cook some more while I recover. Not much planned but I am learning that it can change very quickly so stay tuned.