This has been a LONG week. Actually, Wednesday alone was a long week.
Eric hasn't been feeling well since Saturday. Not terrible, but not great and headachey on and off. He is also having jaw pain which seems really random, but perhaps he is clenching his teeth when he sleeps. Tuesday he was feeling okay and we had a follow up appointment with the podiatrist and got the all clear on his toes! Unfortunately, Tuesday evening his headache was really bad and even worse Wednesday morning. I gave him some pain meds and that got us to the hospital but he said it really only took the edge off. His nose had also been bleeding since 8am so when we arrived at the hospital we were able to get the platelet transfusion right away. His nose was still bleeding a little after that so he was also given a dose of TXA. Then he was in agony with his headache again so he got pain meds. While all of this was happening, we got his blood counts back and were surprised to learn that his hemoglobin was 86. We had both assumed his hemoglobin was low and that's why he was having headaches, but 86 is not generally headache low. In talking with his team we decided to give a blood transfusion anyhow just to rule it out as the cause of the headaches.
Eric fell asleep during the blood transfusion and I had a chat with his oncologist and nurse practitioner. Eric's been on this new treatment about 3 months now and it doesn't seem like it's working. His Oncologist wants to do a biopsy next week to check what is happening in the marrow. It is possible that the treatment is working and it is a decreased population of mutated cells that are very active throwing out a lot of blast cells. However, it is more likely that the mutated cells have not decreased and that's why we are seeing increased blasts. Additionally, his Oncologist wants to do an LP (lumbar puncture) because of the headaches. This is to rule out the cancer crossing the blood brain barrier. I am not concerned about that this time because Eric had an LP just before Christmas when he was having headaches and it was clear.
Eric woke up just as the blood transfusion was ending and he asked for more pain meds, so had another infusion before being de-accessed. We finally were able to leave the hospital about 4pm and this time we got home about 5pm, unlike last time we left at 4 and it took us 1 hour and 50 minutes to get home! We are still not over that. Unfortunately, Eric vomited the second he walked in the front door.
In the evening, Eric still wasn't feeling well so was resting in bed. I went to give him his meds and found his skin was burning up. He didn't want me to take his temp because we both knew he had a fever and he didn't want to go back to the hospital. Sure enough his temp was 38.4 and I told him I had to call the doctor. He was so upset. He said I could call, but he wasn't going. Of course the Oncologist on call told us we had to go in. We arrived at the ER a little after 9pm and went straight into a room because the Oncologist called ahead to let them know we were coming. We got a nurse who sometimes works on T8 so he is able to do the port access fairly easily. They took blood for the CBC and cultures and did a nasal swab. No one should have to have this many nasal swabs; they are awful! While lying in the hospital bed, his oxygen saturation levels kept dropping, sometimes quite low, so they put him on oxygen.
They gave him a bunch of meds and when his fever broke and he was feeling slightly less miserable, he went for a chest x-ray. His current treatment is not an immune suppressant so he actually has a few germ fighting white blood cells. This means that we got to go home instead of being admitted to hospital.
We got home a little after 4am but Eric woke up before 8am with a really bad headache. I gave him pain meds and he was able to go back to sleep for a few hours. I got a phone call from our team at the hospital and learned that the nasal swab came back positive for Influenza A, again! This is the same virus he had just after Christmas. We were given a prescription for Tamiflu, an antiviral, to help him fight off the virus. I hope it starts working soon because Eric is still quite miserable. He still has a fever, headache and jaw ache and has been spending his days sleeping on and off.
Next week we are in Monday and Friday for platelets and Wednesday for the biopsy and LP.
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