Sunday, June 21, 2015

Day +18

Home. Something that means so much more than a roof and walls. It is a shelter, true, but not simply from the weather. And I have yearned for that shelter for weeks. But coming home was not quite what I expected it to be. My neutrophils hit 600 on Friday, and Steve all but danced into my room. I knew the threshold to go home was 500, but I thought since my counts had only come in the day before that they would likely keep me until Saturday just to be sure. Nope! Steve told me to start packing because I was ready to go. I called Colten with the good news and set about removing my existence from room 812. They gave me two bags of blood as a parting gift, and I floated as we walked out of the hospital into the sunlight I had not felt for weeks. Finally.

In the hospital, all B.M.T. patients are given a booklet that goes through each type of transplant, preparation before the transplant, and what to expect afterwards. There is an entire section regarding "reassimilation." It cautions that many patients feel depression or anxiety when they return home because they are not allowed or are not physically able to do the things they used to do right away. That's about all I read because I am a homemaker and there are very few times I have let anything keep me from organizing and cleaning my world, and taking care of the people and animals in it. I am realizing with a painful clarity that this transplant is different.

I have developed what the doctors call "asymptomatic bleeding." I call it the "never-ending reign of hellfire," but you know, to each his/her own. N.R.H. (never-ending reign get the picture) is basically like a menstrual period, except it never stops or lets up for a single minute of the day. It is caused by low platelets. This may just sound really annoying (particularly to the menfolk who have absolutely no experience with the matter), but since I am just barely starting to create my own cells again, it is causing a lot of issues. Namely, I run out of red bloods cells pretty much every day, and my platelets are low just about every other day, so I have to have constant transfusions. The doctors have discussed birth control with me as a possible solution, but they all advised against it due to the high risk of blood clots and stroke (and that goes for all women--I had no idea birth control was so dangerous). The suggested course of action is to "ride it out" and continue receiving blood and platelets until my body finally starts creating enough blood and platelets of its own that the bleeding stops.

This is not a great answer for me, but it seems to be the only one available. So, on Saturday, we drove in to the clinic and I got a platelet transfusion, which took about two hours. And then we got to come home again. Crappy, but doable. Towards late evening, I started getting tunnel vision and feeling dizzy whenever I stood up or tried to walk around. My heart rate was way too fast and my blood pressure was way too low. I drank a ton of water to see if my fluid intake had just not been high enough, but around midnight we knew I was getting worse and needed to get to the hospital. We dragged poor Rora out of bed and Colten half carried me in to the clinic. When we got there, a nurse guided us back towards the patient rooms and I felt an incredible urge to flee. "We're just putting you in a room so you can lay down for the night; we expect you need transfusions and that you will be here for awhile," she explained. "As long as it's not room 12," I replied. She laughed and said that it was actually already full. It sounds strange, but I have an intense curiosity about who now fills my room. Is it a man or a woman? What type of transplant are they having? Do they feel trapped? Do they stare out the window at the mountains and find peace? What is their prognosis? Does the line through the T.V. drive them mad, as well?

Anyhow, I found out that room 12 was definitely one of the nicer rooms. We stayed the night in room 8 last night, and there was literally no room to walk around the bed with the three of us in the room. The view was also definitely not as nice. So, I am thankful that I spent my days in 12. Last night was a very long night, particularly for my sweet girl. We all ended up trying to get some sleep while I was given blood, but I think we all tried more than we succeeded. Colten did his best to catch some shuteye on the recliner, and Rora and I snuggled up real close on the rock hard hospital bed. Rora was such a trooper, but when she woke up this morning she said, "I like my bed lot's better." Nurses came and went, lights turned on and off, vitals were continuously taken, pumps beeped and whooshed; the night seemed to go on and on. We made it home at around 10:00 this morning, and I wondered to myself why I left the hospital. If I will be stuck having transfusions every day for 6-8 hours, there is no point in me being home. The doctors think the issue will resolve itself in a few days; I think I am plain discouraged. 

Sitting in a hospital room day after day is terrible. There is nothing to do. No matter how many things you bring to fill the minutes, you will feel boredom at least a few times a day. I sat and listened to all the work Colten was doing to finish packing and moving our old home, as well as set up our new home, and felt such anger that I was not able to help. If only I wasn't stuck in a hospital room! But I was stuck in a hospital room. So I had no choice, I could do nothing. Upon being given my freedom, I quickly found that the hospital room was not the only problem. I am exhausted. All the time. Now, instead of sitting in a hospital room and thinking about everything else I could be doing, I sit on a couch and look around at everything that I want so desperately to do, and just don't have the energy to accomplish. It is infinitely more frustrating actually seeing the work and being unable to perform it. I am driving myself crazy with my uselessness.

I hate change. I know most people say that, but I truly, passionately hate change. My way of coping is to organize my world immediately, and take control of the change. I have so little control here that I have actually felt a pang or two of longing for my perfectly organized little room in the hospital. What's worse is that, even if I had the energy to set up a house, there really is no point. We are living in a second story apartment temporarily until the first floor apartments are finished towards the middle of next month. I have trouble with stairs right now, and our elderly bulldog cannot do stairs at all, so a second story is not a workable home for us. There is really no point in unpacking, but I feel like I am living in a storage center and it adds to my anxiety. I want to walk in the door to a nice, clean, warm home. Not rooms heaped with boxes and a few necessities sprawled randomly about.

It's just so different. I hate adjusting. Rora and Colten have already lived here for a couple weeks and have their own routines, and I am not sure where I fit. I can't really help with anything, so I guess I don't really fit. I have to remind myself to eat all my meals every day, there is no longer a phone call from room service letting me know it is time to order something. With no appetite whatsoever, the phone call was helpful. It's easy to go an entire day without eating a thing. Remembering what pills to take and at what times is also difficult. I've never had so many to contend with. Thankfully, the pharmacy sent me home with excellent pill boxes, and they are helping. It's just so different. The hospital had a lot of benefits that I took for granted.

But home is still better. Putting my girl to bed each night is wonderful. I have missed reading her a story and singing her a lullaby. Petting my sweet puppies is amazing. Our pitbull checks on me all throughout the night to make sure I am doing ok. Being with my husband all day is a blessing. I have missed him so much. I wish I did not feel like such a burden. I believe marriages only work when both spouses give 100%, not 50%. I might be giving 5% right now, and I can't stand it. I know things will settle down. I know that I will get better, and stronger. I know I will eventually be able to unpack and make my haven. I know that I will fit again. I just hope it happens soon, and that my body starts fixing itself. I am ready for healing and happiness. I have seen this quote floating around everywhere in the social media realm: "Fall down seven times, stand up eight." Or nine or ten, or whatever it takes. You just have to keep standing up.     

1 comment:

  1. I can sympathize completely. After moving as many times as we have, we have become experts at quickly setting up house. But for the past three years, we've been living out of boxes because we were in furnished spaces. We will be so happy to finally unpack the boxes. I just hope I have enough energy to do it when the time comes. Radiation is wiping me out!