“Happy to be Home?” This is a loaded question.

I had to write out how I was feeling because I cannot always see things clearly if I “talk” them out. You don’t really need to read it, but I needed to sort out my anger today about this whole experience.

Leaving the hospital, with monitors allowing me the confidence to fall asleep without my blood oxygen dipping; has been a challenge.

I am so happy to be home. I am so glad my dogs know where I am.

I am also where I was before I could stubbornly hold my breath and say, “I’m not taking the steroids until you promise to tend to the side effects this life saving drug is causing.”

I am on four antihistamines and some with off label antihistamine properties. I am being hit hard so my histamine (inflammatory) response isn’t a rage monster that causes a hive if I accidentally touch my skin for too long.

Now, I’m at home so I can both give myself my PRN’s how they’re ordered, but also need to tap back into the loving resources that have become exhausted with me waiting for the white knight of cancer to arrive.

I am home, but I am not as medically supported as everyone who lives in this home believes I should be. I cannot bathe. I cannot remember my new medicines. I cannot remember large parts of my hospital stay. I can not so many things right now.

I can not hold my head up on my own. I am not who I was when I first got sick. I am the person who people start sending cards to because it makes them feel awkward to visit and see that I’m struggling with basic things.

The exhausted people who were with me in the hospital now are tired at home and I don’t have a call bell. My beautiful crew has kept trying and evolving as fast as this hell has allowed.

I have my current voice that finds asking twice for things to make me angry; a side effect of a shortened fuse from steroids. I hold myself in check here, while trying to educate caretakers on how beneficial planning ahead is. The charge nurse in me has to sit back and use 1,000 words to do something that I know how to do when I’m myself.

I’m letting my pitbull massage therapist take over because I haven’t fully tried her treatment plan for me, yet. I’m not trying the cat’s plan, as cats are evil.

This week, my allergy to chemo was obvious and all the hives have left my skin with open spots, hot spots, and the skin on my hands is peeling off in sheets.
I faced compartment syndrome in both hands. (Google compartment syndrome)

My husband and I will never be able to unsee how we almost lost my hands. It’ll be a therapy thing, I’m thinking. Tiny vessels exploded like it was my skin bursting open. It took 12° to distinguish between hives and capillaries leaking causing bruising everywhere.

I have “leaky capillaries,” which now; ummm… explode with too much internal pressure. It’s awful.

I was met with panicked surgeons due to intussusception in my intestines. They wanted me to do a barium swallow and then have surgery. I drank the barium and blew my intestines out, putting a pin in the belly adhesion emergency. Temporarily.

I’m left with a lot of appointments to make and follow up on. I was never set up with a Gl doctor who wanted to know why my bowels turn inside themselves. I find that upsetting now that I see how many holes need to be filled in terms of “my care plan.”

I’m met with a long steroid taper to finish at home.
I have an oncologist I see in five days who will speak her confidence in the allergy I have and the same oncologist who didn’t bother to look at me while I was sleeping in her building.

My lack of faith needs empathy and a solid follow up plan or I find myself feeling resentful of those who say they care or have an answer or idea they won’t share.

I feel a lot of fear being sent home; knowing that the allergist directing my oncologist won’t see me for 4-6 weeks and also never stopped by to see me. And yet, I have my dogs and ability to take medicine as it’s actually ordered, not their way.”

I am happy to be home, but it’s primarily because we all needed to come home and start believing our own eyes and start demanding the right specialists continue to treat me as a whole, and not “a healthy 44 year old who then developed cancer.

I was suffering tremendously before this diagnosis. Oncology doesn’t seem to be factoring in massive body trauma and multiple concussions which locked all my muscles into spasm 13 months ago.

Until they acknowledge me as a whole; I feel compelled to eventually run away instead of explaining myself and being dismissed repeatedly. I feel unsettled and angry that I was seen and admitted for emergencies not followed up on, in spite of promises I’d see those providers while I was inpatient at a hospital I very much respect, but had to leave in order to stomach.