Yesterday afternoon, before the wind became brutal, I had fun flying kites with Sam and my folks.
Later, we went out for yummy pizza with Cam.
I've been enjoying the sunshine today and am glad I got to play Qwirkle with my mom & Sam this morning. While he and I played respectably, she came from behind and destroyed us. Now, my mom & Sam are at Discovery Days at the Romberg Tiburon Center for Environmental Studies.
Cam and my dad are at the 49ers game. I have a little time to write.
I woke up in the night last night around 2am and almost got up to work on finishing the story but decided to stay in bed and ended up sleeping which I figure everyone would prefer.
Thanks for allowing me to be so self-absorbed while I process everything. I feel like a brat when I feel sorry for myself because I am so loved and have so many blessings and this is supposed to be treatable and everything but Cam listened to me cry this morning about how I don't want it.
I want to be done feeling bad rather than walking into a procedure which sounds really invasive and will leave me with a wound. According to the surgeon, I will be sore for a month and will have to avoid strenuous activity for three months. I'd rather not. I'd rather just be well but this is where we are. Thanks again for caring.
So, how did we get here? On Tuesday, 9/22, the hematologist was concerned by my blood work from the previous week. I implored him to look at my blood work from the day before before insisting I go into the hospital. I told him how much better I was feeling and hoped that would be reflected in the blood they'd just taken from me. He agreed to get those results and give me a call back. When he called that afternoon, he said my levels were still very concerning. I think he may have said they were the lowest levels he'd seen. He really thought I should go to the emergency room.
I spent some time checking with my insurance to see which hospitals were in our network to make sure I could be admitted into the hospital affiliated with the emergency room I would visit as the hematologist said he thought I would have to be in the hospital for a few days until they figured things out.
I chose to go to the ER affiliated w/the hospital affiliated with the hematologist who was sending me to the hospital. Once I knew where I was going, I also arranged to have all of my blood work sent to that ER. I didn't want to show up and have them act like it was unnecessary. I still remember the first time I went to the hospital when I was pregnant with Sam how they told me, "You don't look like you are in labor."
When I arrived at this emergency room, they did look at me with that, "Why are you here" face but once they looked at my blood work (and took more) they were saying things like my levels were "critically low" and that it was an emergency. The doctor on call with my medical group came in, said something was attacking my bone marrow, started tossing around the word Leukemia and saying how I would likely have a bone marrow biopsy the following day. I started to get scared.
I guess Cam had read more than I had about the reasons someone might have very low neutrophil levels and was already concerned about this possibility but I wasn't until then. Up until that point, I thought all of the wacky blood work was a result of the infections I'd been fighting and once we fixed those, my blood would return to normal. My doctor was testing my blood for scary sounding things but she kept sounding like she didn't think I had those things and that we were just ruling them out. This was the first time someone sounded like they expected I had something scary sounding. I didn't know much about what it meant to have a bone marrow biopsy but it sounded like it was going to hurt.
Despite looming threats that I might have a scary illness and would most likely have a painful procedure ahead, the thing that was bothering me most was what I now think is called a peripheral intravenous catheter. I called it a needle stuck in my arm. The nurse who inserted it explained that it wasn't a needle but a tube. Regardless, without talking with me first about what they were doing or why, they had stuck something into my arm, without asking permission and they wouldn't take it out. It made me angry. I didn't want it and didn't know why I needed it and I wanted it out. One doctor listened but another said it was necessary as they expected I would be getting antibiotics via an IV.
They took an x-ray of my chest then brought me into my hospital room. Cameron and Sam had been with me but ran out to grab some dinner for all of us. Then, around 9pm, they headed out. Sam had school the next day and had been out of school for several days already (one because of family visiting, two for the weekend and two for teacher in-service days).
I called my parents to talk with them about what was happening. I cried to them about how my day and outlook on things had been turned upside down in that emergency room. They acknowledged that it sounded scary and upsetting. My mom said I sounded tired and encouraged me to sleep. I was waiting for them to come hook me up to the IV (and give me some medicine to help me feel better about the whole situation which had created a lot of anxiety all of a sudden). I didn't want to go to sleep yet. I called my brother who also listened to me cry and joked about how he wished he were there to make people do things for me and make them listen.
Finally, the really nice male nurse came back into the room to get me set up. He asked questions like he was starting from scratch and I didn't understand why the information I'd shared in the ER downstairs hadn't been given to him but it hadn't. I repeated my story for him. Finally, I was ready to rest. I woke up that night at 1:30am and again at 4:30am. Then, I slept until 9:30am when I met the hospitalist, an internal medicine doctor who would be responsible for my treatment while I was in the hospital. He listened to me express my new found anxiety and discomfort and displeasure and agreed to do what he could to make things as comfortable for me as possible.
Cameron had canceled his classes and showed up in time to hear the hospitalist say that he wasn't sure I had Leukemia. I don't even remember exactly why he thought it was legitimate to say this to us but he said that if I had Leukemia, he'd expect some other levels to look different than they looked. I tried not to pin too much hope on this perspective but it was somewhat comforting.
To make me feel better, Cameron had brought a big, floppy stuffed dog that his mom sent as a present for Sam. I did hold and snuggle that dog sometimes during my stay. he also brought some framed photos and a ceramic turtle for the little table I faced from my hospital bed. Those little touches meant a lot. We hugged lots, cried some and I rested a bit.
Shortly after noon, the hematologist came by to do the bone marrow biopsy. He was calm but straightforward and expressed what he saw as the very real possibility that I might have Leukemia. He explained the procedure and while it sounded fairly awful he said that he would make the area numb and that the only think I would likely feel was the shot to numb things and then some pressure for a few minutes. He said the whole thing should only take about 10 minutes.
Since I'd had time to prepare for the procedure, was rested, was medicated, was supported and knew it would be over soon and sounded necessary, I was ready. As ready as you can be for something like that I guess. Cameron held my hand the whole time. I did squeeze his hand quite a few times but mostly in a clenching, "I'm scared" sort of way, rather than a wrenching "this really hurts sort of way." (I remember giving at least one of those when Sam was born.)
When it was over, I posted, "When I wrote about new experiences ahead, I had no idea one would be a bone marrow biopsy. It's over and was tolerable with Cam holding my hand. Now we wait." Cam had made arrangements for Sam to spend the night at his friend Leo's house that night so he could spend the night with me. I'm very thankful he was able to be there and that Sam was with our good friends.
That afternoon, while Cam was out getting some approved snacks for me and some lunch food for himself, Erika, a friend of mine from CASA, stopped by. It was really nice to see her. I greatly appreciated her caring. She could only stay a short while but offered to come by the next night and bring dinner. It was such a lovely offer, I said, "Great."
That evening, to pass the time, Cam & I watched the Clint Eastwood movie, Gran Torino. I thought it was worthwhile. That night, despite them coming in five times in two and a half hours to do some necessary thing, we both slept fairly well.
The next morning, Thursday, 9/24, I felt good. When he'd been there, the hematologist said that on Friday would could start negotiating about when I could go home but I gave the poor hospitalist a hard time that morning, asking if I couldn't wait for the test results at home. He said they weren't ready to let me go yet. I asked if they could at least take the thing out of my arm. He said not yet, as they still wanted to give me more IV antibiotics. He did say I could take a shower and put on some regular clothes.
Cam spent the morning with while I got my shower then went home to grab some lunch, take his own shower and pick Sam up. They were going to come back and spend the evening with me. I was excited about feeling well enough to hang out with them and for my friend, Erika to come by with her yummy food. (She's a wonderful cook.) Then, my throat started hurting and I started to get scared again. On the outside of the door to my room, there was a big stop sign, warning people not to come in if they might be sick, since I was so vulnerable to infection. Now, I was worried that I was getting sick with something I might not be able to fight. I ended up asking Erika for a rain check, explaining that I needed to rest.
Cam & Sam arrived but when I realized Sam wasn't feeling well and had a stuffy nose, I had a hard time enjoying them being there and started to be paranoid and scared. I didn't want to be afraid of getting some cold from Sam but I was worried. The hospitalist came in to talk with us then and said that he didn't think I could catch strep throat with all of the antibiotics they were pumping into me and that he wasn't as worried about me catching a viral infection from Sam as they were about me getting a bacterial infection. I chilled out a bit.
Before he left, the hospitalist had told us the good news that in her preliminary look at my bone marrow, the pathologist had seen the absence of the cells I was missing but hadn't seen invasive cells like they would expect to see with Leukemia. This was great news but I still wasn't feeling well and they weren't saying I was in the clear yet. I took some more meds to make me feel better and pretty much crashed on the guys.
We'd agreed that Cam would take Sam home that night and spend the night with him. Cameron's brother, Eric was coming in from Chicago for his first visit since we've lived in California. At one point, they talked about canceling the trip but I didn't want to be the reason these brothers didn't have time together. I didn't want to be that sick. We decided that Sam could spend the night with me in the hospital on Friday if I had to stay. He'd expressed some interest in sleeping at the hospital earlier and I'd been missing him so since I didn't have to worry about catching anything from him, it seemed like a good plan.
When the hospitalist said they didn't see Leukemia right away, he mentioned that there was another thing it could be. He made it sound unlikely but said that there was a possibility there might be something non-cancerous in my chest that was causing the problem. If that turned out to be the case, it seemed like it would be fairly straight-forward to take the thing out. He didn't seem to expect to find anything but wanted me to have a CAT Scan the following morning just in case. I said sure, joking that it would be another new experience.
(I did have something like a CAT Scan when I was in 6th grade and my parents took me to an ear, nose and throat specialist to see why I couldn't smell. They said it might have been a brain tumor. It turned out not to be a brain tumor and said maybe I damaged my smell receptors in some early fall but also said some people are just born that way.)
I got a ton of sleep that Thursday night and by Friday, 9/25, I was really ready to go home. They took me down for the CAT Scan where they pumped some crazy fluid into my IV to make my insides show up on the CAT Scan. I laid on a table that moved back and forth under this big arched tunnel. I had to hold my breath a few times and we were done. The guy who transported me to and from the CAT Scan said I didn't look sick. I said that I didn't feel sick but that they were worried about my blood.
I was sort of back to hoping they wouldn't find anything and that it was just a fluke. I'd heard that sometimes people's levels just go back up and they don't know why. That would have been alright with me.
That afternoon, while Cam and Sam were on their way to me, the hospitalist came in with mixed news. He said that in further study of my bone marrow, the pathologist had not seen Leukemia. He said they were sending it off to a pathologist who specializes in this type of medicine for a closer look. In the meantime, they had found something they wanted to investigate. They had seen something on my CAT Scan.
The hospitalist said that finding out that part of my thymus gland was enlarged was not at all what they expected. He said that Leukemia would have been the most common explanation but that since they didn't find Leukemia, they wanted to find out more about what was happening with my thymus. I didn't know what this meant at the time and realized that I might have to have something removed but I have a friend who has had her thyroid removed and I think I thought he was talking about something like that. I would worry about it later.
All I knew was that they didn't think I had cancer, they were letting me go home, they were going to take the thing out of my arm and I felt well. I was free for a weekend with my family. I was happy.
To be continued...