Home but not. I have spent the week in the hospital fighting this infection. Here is how it went.
To continue from Monday, Aug 19, I spent the rest of the afternoon with MA hooked up to the IV. The antibiotics that I am on are given every 6 hours so they keep a saline bag attached along with it that drips after the antibiotics are done so that they can keep my vein open. It is very tiring having to drag the IV pole everywhere I go but that is my life this week. The highlight for the day was a visit from Dave, one of my Thursday Night Hockey buddies. He dropped by around 6:00 PM and brought a huge bag of treats, while MA was still here. We chatted for a very long time when he realized that his 2h parking meter had expired and he did not top it up. By this time, it was too late to do so as the ticket would already be on the window so he stayed until after 9:00 PM and crossed his fingers. On his way out, we both gave hugs goodbye as Dave tried to sneak one from the hot nurse who was in my room at this time. The nurse did not see before MA shooed him away. I got a text from him later saying there was no ticket so that was great news and did not spoil the wonderful night we had. MA stayed a bit longer before going home to rest and take care of the dog.
On Tuesday, Aug 20, was another uneventful day. Mostly sat around waiting for things to happen (meals to come, nurses to do vitals and IV changes, doctor to come by, …). My blood counts are not changing much. They rise after each transfusion and then slowly drop afterwards. My neutrophils counts (the measure of my immune system) stays the same at 0.0 though I continue to take injections to help boost them. The infection seems to be getting a bit smaller but not changing a whole lot. I received a visit from my work colleagues at lunch. They brought with them a lovely bouquet of flowers. My manager from Germany was in town so she was able to round up quite a few people to visit, including two new people who I had not met yet. It was great to see them as it has been a few months since the last time we were together. MA came by with Shelly for a visit shortly after my company left. It was funny to see all the nurses come by who had heard that there was a dog in the neighbourhood. We did find out that Shelly needs more paperwork to stay with me so we have decided to hold off bringing her in for now until we can get everything in order. This is really too bad as I do enjoy her company and she puts a smile on everyone’s faces. MA left early that day to get more rest and prepare for all the massages she would be giving the following day. The good news for the day was that my nurse, Marcel, was able to free me from the IV for a little while which allowed me to shower and shave. It was nice to get cleaned up as it had been a couple of days since the last shower. Another bit of good news is that I was able to do some walking. I walked around the ward and was able to walk at a much faster pace than I had before. I was pleasantly surprised by how much I was able to do, given how little I have done in the last few months.
Wednesday, Aug 21, was a painful one as I required a bone marrow biopsy. I was a bit stressed about it so I did not sleep well the night before. This procedure was required as they needed to understand why my counts are so low as it will help them know if the cause is a disease or if my new CAR T cells are to blame. The doctor was by around 10:00 to perform the procedure. Though they freeze the area it still hurts like hell during and afterwards. They would add freezing as needed to help with the pain during the procedure but it is still a stabbing shock of when they find an area that was not quite frozen yet. It is hard not to flinch when you feel the pain and they have a long needle in your hip. The doctor wrapped up by 11:00 and I spent the next 1/2 h putting pressure on the wound. Since, I did not feel like sitting down on my now sore butt, I decided to do another walk around the ward before lunch. I was able to get a good 7 laps in before I called it. Spent the rest of the afternoon reading and playing games on my iPad. I did need another blood and platelet transfusion so that was intermixed in my activities for the day. MA stopped by after dinner and stayed late as she was waiting for G to get dropped off at the hospital as she was volunteering at a local music festival for the week.
Thursday, Aug 22, it was pretty much the same. Sit around and watch the world go by from my window and doorway. Chatting with the nurse in the morning brought up an interesting idea. She mentioned that I am not bound to the ward and can leave it at any time should I want to go outside or anywhere else in the hospital. Naturally, because of my low immune system, I would need to wear a mask once off the ward to protect myself. I took advantage of this and asked if I could “escape” that evening for a few hours in between IV drips. She mentioned that I would need to speak with the doctor but she did not have any issues with it. So my mission started: Find a way to convince the doctors to let me get out and visit with the hockey boys for wings and ginger ale tonight! When the resident doctor came by for rounds, I asked if he had biopsy results yet and he did have some but more are to come. So far, the diseases they have tested for have come back negative. There are still some more tests needed and I would not get their results until later in the week. He looked at my infection which had not progressed much in the last day. And finally, I asked the question, “Can I go out tonight?” At the time, he did not see any issue with me going out however he would need to run it by the doctor to confirm as my neutrophils were still 0. There was hope but I was not counting on it because my immune system was so weak and, if I was to make it out, I would need to wear a mask which makes it hard to eat wings. In any event, it was worth the try as it would still be good to see the boys. I waited all afternoon for the answer and it was not coming. Finally, around dinner, the nursed called the doctor and the answer was no. It was not a devastating loss but it would have been fun to be there none the less. By this time, MA was here for the evening. I did get another visit from my manager as she was heading to the airport to fly back home. She was able to stay for about an hour and MA finally got to meet her. After she left, MA and I decided to go for a walk outside since I had this newfound freedom. Too bad the wind was very cold and there was not enough sun to warm me up so it cut into my walk time.
Friday, Aug 23, started off as a good day. In the early morning, I had a visit with my good buddy Rick followed shortly by MA and Cassy. Cassy had an appointment at CHEO which is next door to the Ottawa General so I had a chance to catch up with her as I had not seen her since the football game. Too bad that I have been coughing all week and this morning I was scheduled for a chest x-ray to see if I had any infections in my lungs. I figured that there was none as it was a dry cough and I have had it off and on for a while now but it was still good to make sure. They arrived before I needed to leave for my x-ray. Before my appointment, the nurse came by to replace the dressing that was on my infection. Everyone in the room, especially MA was very anxious to see what it looked like without it. It was not pretty and I will not go into the details of it but it was then cleaned and redressed. The nurse took extra time to accurately trace the outline of the infection on the dressing so that we can better see how it progresses, day to day. The x-ray portion of my appointment was quick but getting to and from was very slow. I needed to be transported by gurney again, even though I am perfectly capable of walking there. By the time I got back though, MA had to leave to bring Cassy home and start massaging. Rick was still here and we chatted for a while until he left late morning. After lunch, the nurse disconnected me from the IV and I was free for almost 6 hours. It was great to be able to move around without having to lug a pole with me. I did not do much during this time which, in hindsight I should have. Later in the afternoon, Li stopped by for a visit before she headed out to her cottage. It was a pretty quiet afternoon with the only excitement was that a crane was parked outside my window so I would watch what it was doing. After dinner, my resident and the hematology doctor (who I had not met yet) stopped by for a visit. During their visit, I showed them that my wound seemed to be getting bigger since the morning. They checked it out and decided to give me another IV antibiotic. Also, they had more results from the biopsy and it appears that it could be my CAR-T cells affecting my counts. As a result, they decided to give me immunoglobulins to help my bone marrow produce cells. This was the start of a very long 36h. My day nurse said that he could not start the new IV so he would leave it for the night nurse as it was getting too late in his shift. The night nurse started the new IV antibiotics around 8 and it needed to run for 1.5h. After it was done, he could then start the immunoglobulin IV. As this is a blood product, they need to slowly introduce it into me to make sure I don’t react. We started this process at 10:00PM and he needed to check vitals every 15 minutes before each increase in dosage. Because this was my first time, they needed to cap the rate to 200ml/h which meant that I would not be done until 3:30 in the morning. Once I reached the max rate, they were able to reduce the number of vitals needed to once an hour. This happened around 12:30 which was around the time that MA decided to head home. By this time, G was at the hospital after her volunteering at the festival was done. At this same time, I was due for another round of IV antibiotics and, since my current IV line was used, we needed to start another one. We tapped my other arm to do this and ran the IV for the 1/2 h required and then pulled it out. After all this, I decided to try to nap between each vitals check to get a bit of sleep. Once this was done at 3:30 AM, I asked to be put onto a slow drip IV so that they would not need to wake me in the morning when I needed to run my next IV antibiotics.
Saturday, Aug 24, was a long but fun day. I was pretty tired from the night before and sad that my coffee lady was not coming by today. I really needed her today as I was pretty much tied to an IV pole for the whole day and did not get a chance to get my own. Though I tried to catch up on sleep, I was awakened a lot in the morning with the usual routines of blood draws, IV antibiotics and breakfast. Today though, it was going to be a long day. It turns out that my blood counts were low again so I was going to need transfusions for both red blood and platelets on top of the second course of my immunoglobulins. So by 10:00, we started the blood transfusions. The nurse was pretty efficient in timing all the events as once the first bag of blood was done, I was due for one of my IV antibiotics. Once it was done, the second blood bag was hung and started. With it complete, the platelets came next. While this was all being done, I had another visit from Rick in the early afternoon. We chatted again and spent time watching the crane lift stuff to the roof. By about 3:00, the crane was done so we anxiously waited to see them dismantle the extension they had put onto it but it never happened. We were both bummed that we did not get a chance to see it. Boys and toys! Shortly afterwards, Rick headed home. I was expecting MA to show up before he left but she was still not there. I went to the washroom and as I got out another friend Marc showed up in my room. We chatted for about 2h before he needed to head home for dinner. After he left, I got a brief reprieve from all the IV’s just before dinner arrived. After supper, MA showed up and I was back on the IV to get the next courses of antibiotics before starting the immunoglobulin drip. This time, we were able to start a little earlier than last night and we were able to push it in faster. As a result, I was able to complete the doses by 12:30 AM at which time I was due for another antibiotics round. The good thing with the antibiotics is that I can sleep while it is running. MA left early that night, around 10:30 PM, when G showed up again after her volunteering.
Sunday, Aug 25, was a bit easier. Only thing on the schedule is the IV antibotics which happens every 6 h and 12 h. This means more free time without being attached to the line. Spent the morning reading yesterday’s paper and catching up on email and writing the blog. My nurse offered a very interesting proposition. Given that I only have the antibiotics today, there is nothing stopping me from leaving the hospital for an outing so long as I am back in time for my next doses. This is great timing as Cassy has a big soccer game tonight and it would be great if I can go out to see it. I chatted with the nurse about this and he is doing what he can to make it happen. He is shifting my antibiotics schedule to better align with the times I will be out and has called the doctor to come by as soon as possible to see me so that I can plan everything. At this time, I am still waiting for the doctor to show though he/she was supposed to be here 1h ago. More to come on this in my next post.
The plan for the week will be to work to get my blood counts higher so that I can get the fuck out of the hospital and be home finally after a long summer. There is a glimmer of hope that this could come soon as my neutrophils count on Sunday was 0.1! It is a small increase but is much better than the 0.0 I have been all week. Hopefully, I will have more people who come and visit to help me pass the time while I am in hospital. Not sure yet what else might happen as I still do not know when I will be released. I wanted to thank everyone who has been sending all their well wishes. I am grateful to all of you and hope to thank you in person very soon. It does help me stay positive and kick this once and for all.