Friday,
March 14th
After short and sweet lab visits on Wednesday & Thursday, Friday morning I packed up the dog and my things and said goodbye to the Masters Family as I was headed home and they were headed out on a ski vacation to Park City on Monday. The lab visit went quickly although I noticed my blood numbers had not responded as I had expected. My WBC count was very low still even with the shots. I emailed my Dr. as I left the lab for home and he responded that I needed to continue with Neupogen until my blood levels returned to acceptable levels. This was a different than the set five days originally explained to me, now I understand that this phase is based on blood results. I planned to go up to Orlando for Saturday & Sunday visits, then return Sunday night into Monday. My appointment was set for 3:30 on Saturday so I would at least get to enjoy a night at home and make it to my daughter's soccer game.
Saturday, March 15th
After a lazy morning, I went for a bike ride with Joanne down to Round Island Park where there are typically manatees hanging out during the winter months. Today there were several very active ones swimming and splashing around, it never gets old watching them. There's a short path that leads to an observation tower we walked to, my pulse was pounding pretty hard after just three flights. The low blood counts were not helping me.
We drove separately up to the soccer game, I took Emily with me for some quality time (she watched a DVD with headphones in) and then I picked up Tyler who had been referring during the morning. I let him get some more driving practice by taking us up to Melbourne. During the drive the lab called me and asked me why I had not shown up for my 10:00am appointment. I said, because I was told it was 3:30 today. The lady on the other end of the phone told me that they close at 3:00 and I needed to be there by 2:30. This basically meant that I would miss the entire soccer game which made me feel horrible. We stopped off at my favorite pizza spot in Melbourne (Bizarros New York Pizza), the only place in Florida that actually makes good NY Style pizza. They have pre-made pie sitting out that you choose from, they warm it up for a few minutes and bring it out. It's right by the beach so they have some nice outdoor seating. I don't know what went on there, but somehow they botched this simple process and 'forgot' half of our order. Under a deadline and still without any patience I was pretty upset. I said goodbye to everyone except Brenna who was already at the soccer field warming up. I was pretty down.
The lab visit didn't get much better, my numbers were still in the dumps, I found out that the only reason they called me in early was that they were trying to get out of work early, and the nurse scolded me about not wearing a mask outside while I was Neutropenic (low Neutrophil count). This visit was on a different floor than my appointments during the week so the entire visit seemed out of kilter. I left, with my mask on, and walk out to my truck to drive back to my sister's house.
At least the kids were excited to see me when I returned. I was able to watch some basketball Saturday night, but have to admit, I was not feeling great.
Sunday, March 16th
I returned for my 11:00 appointment at the center where they told me I needed a two unit platelet transfusion. I had platelets before and it wasn't a huge deal, it was just going to take some more time. They pushed in Benedryl proactively prior to the transfusion. I don't know if it was my other low counts or how quickly the nurse pushed in the medicine into my PICC line, but I had a massive head rush and felt very close to passing out. I fought for 20-30 minutes to remain conscious before my head came back around. The first of two bags of platelets was going in and I was now just feeling sleepy from the Benedryl. My eyelids started to swell again which is always disconcerting when looking into a mirror. By the time the transfusion was over, it was already after 3:00 in the afternoon and I was wiped out. As much as I tried I could not get any actual sleep in the hard reclining chairs at the office. I decided that I wouldn't be able to make the two hour drive home and went back to my sister's. The kids were now asking why I kept saying goodbye, but still kept coming back. I was just hoping the swelling in my eyes had subsided enough that they wouldn't be freaked out.
Monday, March 17th
The Masters had to leave at 5:00am to get to the airport so it really was goodbye for now. I had to return home to get all of my work things as well as enough clothes to stay the week as my blood numbers were still not good. This visit went quickly and I was home by lunchtime. I worked for the afternoon but was starting to feel feverish. I was able to see the family again and eat dinner at my own table, but by bedtime I was asking where the thermometer was located. It showed a 99.2 confirming that I had a low grade fever. Abnormally high temperatures are not good with low WBC counts. It was a restless night's sleep.
Tuesday, March 18th
I was able to see the kids off to school (except Tyler who gets up at 5:45 to catch his bus by 6:15 every day, that's just crazy), it was nice to spend a normal morning at home. I then drove the 2-hr drive back to Orlando for my 11:30 appointment. My wife was getting nervous about me sleeping over at an empty house with a potential infection brewing. When they took my temperature at the clinic, it was now 100.7. The nurse put a call into the Dr. and he ordered me to be admitted directly to the hospital. I was starting to feel worse as the day went on and honestly wasn't too upset about this situation.
By the time they wheeled me over to the hospital, I had full-blown chills. The admission process took longer than expected with several people coming in and asking information that should already be in the computers. I found out that they had order a precautionary chest X-Ray which was back down on the first floor (from the 9th), this was another uncomfortable process since my fever and chills were still raging. They gave me some warm blankets as they wheeled my down on a bed which helped.
It was 11:00 before the first IV antibiotics were hung, clearly with all the moving parts and dependencies, the admitting process is not the most efficient.
Wednesday, March 19th
Picking up here in the overnight, around 1:00am my vitals check showed a 102+ temperature which really cranked up the concern. The nurse brought in ice packs to place around my body. Now I was fighting the chills with layering on blankets while I was fighting the fever with ice packs. It was a choppy rest of the night. By the morning there was finally some good news. The white blood cell count had gone up from 0.5 to 1.7. My morning temperature was down to 99.
A PICC line nurse showed up and informed me that the radiologist saw that the PICC line was inserted too far and was touching my heart. I have felt a fluttering sensation on occasion around my heart and at night, I've had some trouble sleeping on my left side. The nurse said that is because the line is too far in and is touching the heart when I bend into certain positions. He did confirm the original measurement is the same one that he would have recommended (they use a measuring tape outside the body to determine the length of the line). He backed it out 3 centimeters. As he was leaving, the mobile X-ray team rolled in. They were scheduled to shoot after the PICC nurse finished (efficient timing), so they snapped a few X-rays and the PICC nurse was able to verify the new placement looked good from the film.
The Oncologist stopped by in the afternoon and threw out the bold prediction that my levels would be high enough by Thursday to get discharged. I've learned too many times not to pin hopes on predictions, but hard not to start to get excited.
After short and sweet lab visits on Wednesday & Thursday, Friday morning I packed up the dog and my things and said goodbye to the Masters Family as I was headed home and they were headed out on a ski vacation to Park City on Monday. The lab visit went quickly although I noticed my blood numbers had not responded as I had expected. My WBC count was very low still even with the shots. I emailed my Dr. as I left the lab for home and he responded that I needed to continue with Neupogen until my blood levels returned to acceptable levels. This was a different than the set five days originally explained to me, now I understand that this phase is based on blood results. I planned to go up to Orlando for Saturday & Sunday visits, then return Sunday night into Monday. My appointment was set for 3:30 on Saturday so I would at least get to enjoy a night at home and make it to my daughter's soccer game.
Saturday, March 15th
After a lazy morning, I went for a bike ride with Joanne down to Round Island Park where there are typically manatees hanging out during the winter months. Today there were several very active ones swimming and splashing around, it never gets old watching them. There's a short path that leads to an observation tower we walked to, my pulse was pounding pretty hard after just three flights. The low blood counts were not helping me.
We drove separately up to the soccer game, I took Emily with me for some quality time (she watched a DVD with headphones in) and then I picked up Tyler who had been referring during the morning. I let him get some more driving practice by taking us up to Melbourne. During the drive the lab called me and asked me why I had not shown up for my 10:00am appointment. I said, because I was told it was 3:30 today. The lady on the other end of the phone told me that they close at 3:00 and I needed to be there by 2:30. This basically meant that I would miss the entire soccer game which made me feel horrible. We stopped off at my favorite pizza spot in Melbourne (Bizarros New York Pizza), the only place in Florida that actually makes good NY Style pizza. They have pre-made pie sitting out that you choose from, they warm it up for a few minutes and bring it out. It's right by the beach so they have some nice outdoor seating. I don't know what went on there, but somehow they botched this simple process and 'forgot' half of our order. Under a deadline and still without any patience I was pretty upset. I said goodbye to everyone except Brenna who was already at the soccer field warming up. I was pretty down.
The lab visit didn't get much better, my numbers were still in the dumps, I found out that the only reason they called me in early was that they were trying to get out of work early, and the nurse scolded me about not wearing a mask outside while I was Neutropenic (low Neutrophil count). This visit was on a different floor than my appointments during the week so the entire visit seemed out of kilter. I left, with my mask on, and walk out to my truck to drive back to my sister's house.
At least the kids were excited to see me when I returned. I was able to watch some basketball Saturday night, but have to admit, I was not feeling great.
Sunday, March 16th
I returned for my 11:00 appointment at the center where they told me I needed a two unit platelet transfusion. I had platelets before and it wasn't a huge deal, it was just going to take some more time. They pushed in Benedryl proactively prior to the transfusion. I don't know if it was my other low counts or how quickly the nurse pushed in the medicine into my PICC line, but I had a massive head rush and felt very close to passing out. I fought for 20-30 minutes to remain conscious before my head came back around. The first of two bags of platelets was going in and I was now just feeling sleepy from the Benedryl. My eyelids started to swell again which is always disconcerting when looking into a mirror. By the time the transfusion was over, it was already after 3:00 in the afternoon and I was wiped out. As much as I tried I could not get any actual sleep in the hard reclining chairs at the office. I decided that I wouldn't be able to make the two hour drive home and went back to my sister's. The kids were now asking why I kept saying goodbye, but still kept coming back. I was just hoping the swelling in my eyes had subsided enough that they wouldn't be freaked out.
Monday, March 17th
The Masters had to leave at 5:00am to get to the airport so it really was goodbye for now. I had to return home to get all of my work things as well as enough clothes to stay the week as my blood numbers were still not good. This visit went quickly and I was home by lunchtime. I worked for the afternoon but was starting to feel feverish. I was able to see the family again and eat dinner at my own table, but by bedtime I was asking where the thermometer was located. It showed a 99.2 confirming that I had a low grade fever. Abnormally high temperatures are not good with low WBC counts. It was a restless night's sleep.
Tuesday, March 18th
I was able to see the kids off to school (except Tyler who gets up at 5:45 to catch his bus by 6:15 every day, that's just crazy), it was nice to spend a normal morning at home. I then drove the 2-hr drive back to Orlando for my 11:30 appointment. My wife was getting nervous about me sleeping over at an empty house with a potential infection brewing. When they took my temperature at the clinic, it was now 100.7. The nurse put a call into the Dr. and he ordered me to be admitted directly to the hospital. I was starting to feel worse as the day went on and honestly wasn't too upset about this situation.
By the time they wheeled me over to the hospital, I had full-blown chills. The admission process took longer than expected with several people coming in and asking information that should already be in the computers. I found out that they had order a precautionary chest X-Ray which was back down on the first floor (from the 9th), this was another uncomfortable process since my fever and chills were still raging. They gave me some warm blankets as they wheeled my down on a bed which helped.
It was 11:00 before the first IV antibiotics were hung, clearly with all the moving parts and dependencies, the admitting process is not the most efficient.
Wednesday, March 19th
Picking up here in the overnight, around 1:00am my vitals check showed a 102+ temperature which really cranked up the concern. The nurse brought in ice packs to place around my body. Now I was fighting the chills with layering on blankets while I was fighting the fever with ice packs. It was a choppy rest of the night. By the morning there was finally some good news. The white blood cell count had gone up from 0.5 to 1.7. My morning temperature was down to 99.
A PICC line nurse showed up and informed me that the radiologist saw that the PICC line was inserted too far and was touching my heart. I have felt a fluttering sensation on occasion around my heart and at night, I've had some trouble sleeping on my left side. The nurse said that is because the line is too far in and is touching the heart when I bend into certain positions. He did confirm the original measurement is the same one that he would have recommended (they use a measuring tape outside the body to determine the length of the line). He backed it out 3 centimeters. As he was leaving, the mobile X-ray team rolled in. They were scheduled to shoot after the PICC nurse finished (efficient timing), so they snapped a few X-rays and the PICC nurse was able to verify the new placement looked good from the film.
The Oncologist stopped by in the afternoon and threw out the bold prediction that my levels would be high enough by Thursday to get discharged. I've learned too many times not to pin hopes on predictions, but hard not to start to get excited.
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