Monthly Archives: March 2013
Feel free to adopt these as your own next time you are sick.
1. I try not to dose off in bed much after 12 noon but don’t expect me to actually get out of bed until 2:00
2. I will probably not be functional or coherent until after 2:00 in the afternoon.
3. My bedroom is the best room in the house. It is 10 degrees warmer, has a TV that fills one wall with access to anything I want to watch, the bed has a million blankets and pillows. Just ask my buddies who hang out in bed with me. B, Vic, Em, Gab, Rach, you know what I’m talking about. Wait, did you get to hang out in my bed, Rach? Tragic you came all this way.
4. I don’t always wear pants in bed. You might say that I rarely wear pants in bed. The hospital staff can attest to this. I am comfortable with you seeing my undies and you should be too.
5. If you are in my house to take care of me I will text you if I need something. It’s okay, I’m used to it. It’s Jeffrey best mode of communication.
6. If I say I should eat something that does not mean that I want to eat something or that I feel like eating something or that I have something in mind to eat. It just means that I cognitively recognize that I SHOULD eat and therefore you should bring me something palpable and I’ll try to choke it down.
7. In spite of my life-threatening illness I continue to be quite vain and superficial. Humor me. It’s something I can control that keeps me from worrying about all the terrible, horrible things that I can’t.
8. If I do manage to contribute to the household in some way like making dinner or sweeping the floor I will sit around for the next few days gloating about how awesome I am. Yes, I have become a man.
9. I like to walk myself instead of taking a wheelchair whenever I am able. I walk really slow. Walking ahead of me will not make me walk faster. Walking behind me will only make me slower.
10. I sometimes fall sleep while talking to friends. It happens in the middle of a sentence. I’ve probably talked to people while asleep. Sleep overtakes me and I have no choice. Don’t be offended if this happens to you. You have my permission to try to get me to say something stupid.
This was supposed to be published last night but I fell asleep.
I’m sleeping over at my home away from home, The OSU James Cancer Center. There is nothing new or crazy or serious to report. I’m just dealing with the same issues as before. I had a reoccurrence of C. diff which isn’t uncommon for people like me. The mild fever brought me in on Saturday but the doctor was able to score me a room on the 3rd floor without us having to go through the ER or admitting. We walked into the hospital and up to the 3rd floor. Actually, Jeffrey walked. I got a wheel chair because I was tired and sick and he has no patience for my slow walking. Here on the 3 rd floor I am greeted by the friendly and faithful nursing staff. My best buddy was not working this weekend but all the nurses are great. I got a chest x-ray, nose swab, blood taken from my central line and from my arm to test for blood infection and urine and fecal sample testing. These are all standard protocol when a BMT patient presents with a fever. I went over medications with the nurse. Somehow, even though I was just here on Thursday and my last hospital stay was just a couple weeks ago they lost half the meds off my list. The inpatient orders don’t carry over from the clinic. So they have to get the doctor to reorder all my pills. I think they could do better at this.
Saturday we had time to prepare before coming in. I called in the morning and I was told that I would get a call when a room was ready probably in the afternoon. Carolyn helped me pack a bag and Jeffrey talked to the kids about me going to the hospital. They had no reaction to the news. It was slightly disturbing how well they just go with the flow with bad news. I know it affects them deeply but they both sort of shrugged at the news and said okay. They both get clingy and want “mommy time” at home when I’m there. I think it’s because they fear any day they could come home from school and I won’t be there. It’s happened before. A couple times. They also know that at any time on the weekends their grandma might show up and Daddy will take Mommy to the hospital and I’ll be gone. It’s happened more than once. We all always know about this possibility. It is our new normal. I hate all the cancer colloquialisms (survivor, fighting cancer, lost the battle, etc) but this one works. We aren’t going to get back to normal. We have to create our new normal. But the exciting thing to me is that we are making it up as we go and we are starting a new life as a family. The transition means changing everything they’ve always known. I have no idea of how this will affect their adults selves. Amira already says she wants to be a Luekemia doctor. We’ll support her in this goal by starting Adderal at around 3rd grade. You know what I’m talking about, anyone who’s ever met her.
This illness should not affect my long term recovery as long as it is kept under control which means coming here every time I get sick. It might push back some of the milestone dates. I might not be able to get my central line removed by day 100 as I hoped. This may delay our party. I don’t want to celebrate until that line is out.
I should be out of here tomorrow (Monday) sometime. There are 5-6 inches of snow predicted. Jeff says that the Jeep can get through anything so he’ll get me home without a problem. I’ll back to my regular schedule of laying in bed until noon before I take on the important things of the day like eat. I love Hotel James but the food is awful.
“Is this my life or am I breathing underwater.”
Amira sent me to the hospital with her wolf dog to take care of me. I’m posting this and walking away before I regret putting a picture of myself with no makeup and hair and messy eyebrows online.
Someone asked me how long recovery takes. My answer? Longer than this. Today is day 58 post transplant. Maybe I’m supposed to be doing better than I am but I’m home at least for now. My team goes so fast from encouraging me to rest and let my body heal to expecting me to get up and start joining the real world. My last doctor appointment I was admonished to gain three pounds and try a couple outings. I’ve left the house twice other than doctor appointments but I feel like I go begrudgingly like I have to do it. It’s still cold outside and I like my bed and I’m not ready. Did you hear me? I’M NOT READY. My family members wake me up at 9:00 am to choke down approximately 20 pills with a carton of Boost Breeze nutritional drink and I’m back asleep by 9:30. I sleep until 10:30 when I wake up again determined to get up but I fall back asleep until 11:30. Even at 11:30 when I manage to stay awake I don’t actually get out of bed until 12:00 or 1:00. What do I do during that time? I lay there in the quiet trying not to think about how my hands won’t stop shaking and how sick I feel. Sometimes I listen to music but turning on the TV is the best way to guess that I am getting up for the day.
Thursday I had physical therapy. I haven’t been back since the transplant. I made appointments but it didn’t work out for me to go because I had to go to the stupid hospital. My dad has been here taking care of me and I feel awful because I ignore him all morning while I sleep and he is up and down the basement stairs doing laundry. I’m sure he is bored with me but he never complains. He just wakes me for pills and lets me be. My PT had to do new assessments since I missed so much time while I was in the hospital. He says I have some muscle strength but no endurance.
My dad was nice enough to point out that he could tell I was on steroids again because my face is puffy. The doctor scolded him and warned that might’ve the worst thing he could say to me. He said that I look thin but I still weigh a lot for a girl. I do have a changed appearance since transplant. I may have a perma-tan from the radiation. The skin on my body and face is a shade or two darker than it was pre-transplant. I have new freckles and moles and existing ones are darker. I’m going to have to see a dermatologist regularly to check for basal cell carcinoma. I do have new hair coming in. It is growing thick and dark on my head with a smattering of either blonde or gray, I can’t decide. It’s too soon to tell if my new hair is curly or straight. It’s called chemo curls because some people get curly hair when it grows. I can feel my eyelashes growing in. My eyes are irritated from the regrowth. The eyebrows are growing in sparse and wild. I’m going to have to go for a brow wax as soon as they get a little thicker.
My new goals are to balance sleep/awake time and try to do a little bit more around the house. The doctor is wanting proof that I’m getting better through weight gain and independence. I’ll do what I can. I still feel worlds away from eating, sleeping and functioning like a normal person.
I know my last post was about me getting home from the hospital but I was just kidding. I was only home for 24 hours. Maybe not even that long. I spiked a fever when Carolyn was here taking care of me. I called the hospital clinic and they told me to come right in. Xander was home from school. He broke out in major hives the night before and was having a stressful week at school so I told him he could take the day off if he wanted to rest. Unfortunatly he had to go with us to the hospital. He was a big helper actually and carried my stuff. I think it was good for him to see where I go at the clinic and be a part of my admission process. So many times I just disappear for a few days or weeks and they have no warning or concrete information about where I am.
As soon as we got to the 11 th floor I was told that they were admitting me because of the fever without even examining me. I had to wait for a bed because the hospital was full. I got checked into 10 James by 8:00 pm. I stayed mostly cheerful because my college roomie, Rachael, arrived from Tucson that same day and she was there the whole time. I have a small amount of guilt that she spent her whole vacation in the hospital with me bit I think she secretly enjoyed it. My friends quickly acclimate to my casual sick (its a real fashion thing) environment and she enjoyed the pajama and TV time. This is a vacation for a mom of 4 kids for sure. And special thanks to her husband for sharing her and taking care of the kids on his own. He’s a great dad but I know it is exhausting.
I may be the only person to consistently lose weight on prednisone. This time it was 60 mg a day for a week along with IV fluids. My doctors are smart and start treating for worst case scenario while we wait for test results. This time the worst case did not happen and we all cheered when I came back positive for c-diff. The doctor’s next thought was that I was having Acute GVHD of the GI tract. Not only would this be a long term illness to manage the procedures to appropriately diagnose include endoscopy and colonoscopy. No fun. The prednisone was started in case it was GVHD but he cut it way back now.
Since this is the hospital I couldn’t avoid having some kind of procedure done. My TriFusion Catheter central line that was installed prior to my bone marrow transplant got a crack in one of the plastic clamps that closes off the line when not in use.
See that little blue piece? That’s the one that broke. We all (including nurses) thought that intervention radiology could easily take the end cap off slip off the cracked clamp and put a new one on. Nope. They replaced the entire central line with a new one which involved twilight anesthesia and recovery time. I gave them hell about this because this is my fourth central line now since June and I was hoping to get the line out permanently in a couple months rather than getting an all new one. I’m still not sure why they had to replace it completely. The resident only had vague answers to my questions. Jerk.
But, I’m home now and I feel well. Better than my first release earlier in the week. They probably shouldn’t have sent me home in the first place because my issues weren’t completely resolved but I was opinionated and they listened to me. Hopefully this time I can stick around home for awhile and maybe even make it to physical therapy.
Here is Rachael all suited up for my c-diff contact precautions. Poor lady is a size XS and the smallest gown is a size large.
Jeffrey and I on movie night at the James.