Tag Archives: hospice

It’s Decided

25 Aug

After talking with my hospice home health nurse, it’s decided that I’m going to get TPN, hydration, and IV antibiotics from my apartment when she visits in addition to the blood draws, physical therapy, and personal care help. I’ll also get remote monitoring of vital signs since I’m a “high hospitalization risk” patient or ‘client’…whatever they want to call me. Then, I’m also going to get a volunteer that comes out to help me with other things around the apartment and takes me to chemo and stuff. That will be much needed. It’s still a little embarrassing to me personally…just needing all of this extra help, but if it helps me get through this without having to move back home, so be it.

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Home Health Aide

10 Jul

I met my home health aide today. She’s going to come twice a week for now. She’ll do things like vitals and blood draws, helping me with personal hygiene stuff, maintaining my mobility and independence as much as possible with some exercises and stuff, pain management (super important), medication management, taking me to appointments, helping with food/nutritional needs, changing my bed sheets if I need her to…that one was a surprise, and keeping up with my medical record stuff so she can keep in contact with my onc. She seems really nice and I feel like I’ll enjoy spending time with her. Through the same program, they’re also offering me some other services like pastoral services, a physical therapist, their own social worker and patient advocate, a counselor, which I’ve been in need of even though I was turned off from the idea. I hope the counselor is good and that I click with them. I also hope they don’t try to give me any diagnosis of a problem that I don’t have like the last one who said she thought I had OCD. I swear I don’t…having some perfectionist tendencies does not make me have OCD. They offer some other stuff, too, but it was a lot to take in at once. Some other stuff is like bereavement and blah blah blah, but…yeah. I think I’ll benefit a lot from this extra help. It should hopefully keep me out of the hospital so often, goodness gracious! Ugh. And I think it will give my family some peace of mind knowing that there’s someone here to specifically help me.

Clinical Trial

9 Jul

I talked to my onc today. Good news, I’ve been discharged! I’m also getting a home health aid through Hospice. My onc is working on a clinical trial that applies to me and that I qualify for…and it’s enrolling now, and I decided to go ahead and let him enroll me in it. My mom would really appreciate it. It’s in phase II. They’re trying Sunitinib in combination with Gemcitabine, which means I’ll be back to getting chemo through an IV and not just oral chemo, though Sunitinib is an oral one. I’m not quite sure how I feel about this, but I figure I have nothing to lose, right? Well, nothing but potentially quality of life. But quality schmality (sarcasm). It’s good, because there’s usually something that excludes me from clinical trials, but this one seems to be a little broader, so I qualify for this one. The trial is at the hospital that’s a little further, but it’s only a 10 to 15 minute drive away as opposed to the one I usually go to, which is 4 blocks away. It’ll be worth it, though. At least there’s something new to be hopeful about.

Helpless

6 Jul

Oh no, I love waking up at 4 AM in excruciating pain and not being able to fall back to sleep. It’s okay, I don’t mind vomiting until I can’t believe that there’d be anything left inside for me to bring up. No, I’m fine with having stage IV cancer with mets that won’t go away, that I won’t just “get over” so I can move on with my life. I don’t mind having to have conversations about Hospice while I’m only 22 years old, before I reach my dream of being a doctor. I know I’m a good person, and I didn’t do anything to anyone. I know that life is so unfair and never will be fair. I know that I lost my friend when she was 23, and she was the strongest person I’ve ever known. She never stopped fighting, and she still died. People die. That’s just how it goes. That’s a side effect of life. I know that my life has been full, so I guess I’ve lived a whole lifetime in these 22 years. I must have, right? Then why do I feel so angry right now? Why do I feel so helpless? Life is not going how I thought it would. I don’t want to hear my parents’ voices crack every time they talk to me. That’s bull, they shouldn’t have to feel this way. I don’t want my little brother to avoid any serious conversation with me. We’re growing apart when we should be coming together. I have to comfort everyone I talk to in some way or another or listen to them tell me things that I know won’t happen. Or they tell me things that make them feel better, and I have no idea what to say. I don’t know what to do. I used to be in control. I used to have my life all planned out, and now it’s all fallen apart. I have some tough choices that I don’t want to make. I just want to be able to sleep right now and not have to think about any of this. I don’t want to have to make this decision. I just want to close my eyes and pretend this isn’t all happening. Fxck Cancer.

Hospice?

5 Jul

I have some good news. Once I talk with the nutritionist, I’m getting discharged! My heart is looking good, and since I went yesterday, and my O2 sats are up, and I took a couple of laps around the unit, they’re gonna let me go! That’s really good, that’s great, but before that, I have a meeting with my social worker, Mags, and my patient navigator to talk about the benefits of Hospice. I talked with my onc already about the possibility of stopping treatment, but it’s something I’m going to have to think about for a while. I feel like Hospice would be super beneficial, but I can also think of some people who may be kind of upset if I choose to do that. Luckily, it’s not like I’m being pressured into making any kind of decision. I can think about it for as long as I want. It’s gonna take a lot of thinking and serious conversations, so I’m gonna talk to my parents about it in person when I go home. Also, Hospice has more than just a facility that you can go to, they have home health nurses and lots of other things that I’m gonna learn about today, so there’s that.