I’m in hell.
It’s a two bed hotel room beside Dana Farber that I have to share with my two overbearing, overprotective, bickering parents. It’s 7:30 pm, and I’ve effectively taken enough medication to knock myself out for the night. I need THAT kind of break.
Discharge day is always a big deal. There are ten different meetings and teaching sessions that must be done prior to discharge.
All the medications should be filled in advance and reviewed with the PA. If there is an oversight, more scripts need to be written and filled.
Inevitably, there is a fight with my insurance company. This time the fight was over my metoprolol. The troll at the insurance company said the script had been filled too recently. I said I was entitled to two refills at a pharmacy without penalty. The price was only $10.99 so I just bought the damn pills. I’m too tired to fight with the insurance tonight.
Then there’s the final look over, any questions routine from the doctor. I then reassure him that I’m aware of my restrictions and plan on abiding by them. These restrictions include no crowds, restaurant foods, sick people, vegetables, fruits, no breathing in public, etc. Basically everything except hanging out and writing, reading, and watching movies are out of the question for a while. I will not be attending Oktoberfest this weekend with the rest of my friends.
Then the pharmacist comes in to review the schedule of the twenty medications I’ve been prescribed. Jorge, the pharmacist, was surprisingly effective. He even created my medication schedule for me. I am very excited. Usually I do this organizational leg work myself.
After the pharmacist, I saw the nutritionist, and reassured her I was very familiar with my bone marrow transplant diet. That I understood the rationale for the decisions etc.,etc.,etc.
Then the RN comes in to change my dressing for my hickman line and put new caps on the lumens. She then demonstrates how to flush the line with normal saline and how to give myself a subcutaneous injection of my neupogen.
Finally, the PA comes back with my final outpatient schedule. She makes me aware of the VNA that will be coming tomorrow. She outlines my entire schedule for my methotrexate and velcade and clinic appointments I’ll have for the next week. Beyond, that I’m going on a whim.
I’m very lucky I’m a nurse. I’m lucky I’ve had a transplant before and saw all this information coming. If I was a first time patient with no previous health care information, I think my head would pop. It’s one rude awakening when the time comes to take care of yourself. I think my mother’s head did explode.
After some squabbling, my parents AGREED to ALLOW me to walk myself out of the hospital. I want the damn exercise. Squats in the hospital room and dancing around like a maniac do not qualify as a cardiovascular exercise in my book.
Now, we’ve made it back to the hotel room, and I’m trying to readjust to having my twenty-something autonomy ripped out of my clutches by my petrified parents.
I understand why they are behaving the way they are, and I love them for it. I’m very blessed to have such active, supportive parents, but that does not change the fact that they’ll drive me crazy while I’m sequestered for the next couple weeks.
This is the hardest part of the transplant process. The pain and the suffering, I can grin and bear. I can put my head down, block out the world, and do what I have to do.
When I am out on my own in the world, and feeling healthy, it’s much more difficult to maintain my restrictions. Right now, I’m the biggest obstacle to my health. I need to continue to be aware that I am fragile, and that sometimes what I want is very different than what I need.
For example, I would like to see my son and husband this weekend. The possibility of not seeing them is heart breaking. I didn’t realize how difficult isolating myself in a room, and only touching others through barriers, would be emotionally. Jon and Xander have coughs. I’ve been told specifically to avoid anyone with this symptom. A cough in someone could cause a disastrous pneumonia in me. I don’t think I’ll be seeing them this weekend.
I’ll probably cry a little about this tonight, then get my game face on, and convince myself that this action is for the greater good. I’ll recover more quickly. I’ll get back to myself (whoever that is, it’s been so long since I’ve been healthy I may have forgotten).
Whichever way I go from here, I’m pretty confident it’s up. So I’m going to sleep this funk off and feel better tomorrow.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."