Easier Said than Done: Day 6

If you were to meet with doctors about a bone marrow transplant they would give you a plethora of information. Some of that information I will actually share, word for word, from the bone marrow transplant guidebook (I read it three times before admission. Yes, I am one of those people).

Today we are experiencing one of the many days doctors warned us about. Most of the transplant patients have days in a row where they feel “blah.” Today it’s as if Jason’s whole body has the flu. No shakes, no chills, just that feeling like you are sick, really sick. Fortunately, Jason hasn’t had too much nausea and no vomiting today. I am hoping he can rest as much as possible over the course of the next few days until his body begins to climb out of the pit.

Unfortunately, the insides of his cheeks have become raw and the first layer of the skin inside his mouth has sloughed off. This is not unexpected. Some patients will get sores inside their mouths. The discomfort can lead to difficulty eating and drinking but it is very important that patients eat and drink. The loss of skin cells in his mouth occurs because Chemotherapy attacks fast growing cells. Your mouth and hair cells are fast growing and will usually be attacked as chemotherapy continues its work inside your body. Jason hasn’t had any hair loss yet and will probably have to get another haircut before his hair falls out; he doesn’t wish to see it fall onto his pillow in large, dark clumps.

To continue yesterday’s conversation I would like to give an update about Jason’s current platelet count. Whatever the reason, whether it be the donor, the chemotherapy finally suppressing Jason’s immune system to the fullest, or something else, Jason’s platelet count has risen again! He now has 12,000 platelets and his blood level is only lowering by about .3 units per day. This is wonderful news and we look forward to more good news to come as Jason’s body takes on the properties of his brother’s immune system; this will take months so don’t assume it happens overnight. The marrow from the donor has to attach itself to Jason and slowly grow over the course of the next year. We hope to see improvement in his health as this occurs. Doctors are still slightly concerned about his platelets, but the doctors today are not his regular doctors so they know very little about his past with low platelets.

*A tip for the caretakers: Purchase or borrow a laptop for the duration of the hospital admission, along with a pair of headphones. The person for whom you are caring may not have the same taste in music, television and books. If you have a laptop you can watch TV shows, listen to music, and read online without ever interrupting the patient’s favorite TV Shows.

*As long as Jason is in the hospital I always let him have his way with the thermostat, TV, food, etc. I may not appreciate eating Domino’s pizza every other night, or watching 8 hour marathons of Gold Rush reruns, or sitting in a room that is 60 degrees tops. But this is Jason’s health, not mine. And when Jason doesn’t feel well then I don’t think it is right to overrun the areas of his life where he can make his own decisions. A lot has been taken away from him and he should be able to have control over these small things. Plus, if I were in his position I would want to have a caretaker that cared more for my needs and wants than for their own. 

They would need to be OK with eating pasta, Mexican or experimenting with new restaurants, they would need to be able to sit through hours and hours of Dateline, 20/20, 48 hours, 60 minutes, Law and Order, any crime drama, or HGTV. They would play my Youtube playlist on repeat all weekend long and tolerate my singing along. And they would need to learn how to tolerate a very warm room without so much of an utterance of complaint (get some ice water and a cold pack, people, geez. If I can shiver myself to sleep for nights in a row you can tolerate a warm room).

Now, as Jason heals I have the hope and expectation that he and I will be able to compromise on how much television and what kinds of TV shows we watch, the thermostat, and the food. Marriage should not be one-sided. If you love someone you will wish to do the activities they enjoy in order to please them; it goes both ways. But in the meantime I believe this is the right course of action.

Patients are not comfortable in the hospital. They do not sleep in their own bed, they rarely look their best, and they constantly have people asking them invasive questions and touching them. Doctors dictate where they go, what they cannot eat, when they sleep (if ever), and how often they need to shower, walk, and more. Be kind and understanding.

I should also add that Jason is an amazing patient. When Jason is sick he does not yell at me, scream at nurses, throw food, swear at the doctors, or even complain much (which surprises me because I would be complaining if I were going through all of this). And, yes, I have seen patients performing all of the aforementioned actions. This makes my job as a caretaker a great deal easier; I can focus on helping him and I don’t have to feel the stress of an angry or abusive spouse/patient.