welcome to the danger zone

Whiny Walrus Writing

I stayed home again today – this means there isn’t going to be a paycheck next Friday. Good thing chemo is Wednesday, since I won’t need food or have much of a life for a week or two after that. Yes, you read that right ladies and gentlemen, chemo is next Wednesday is chemo, which may very well be my last chemo, we can only hope. I’m so done with all of this – waking up to eyes crusted closed because I have no eyelashes to protect them, the dry scratchy skin on my face and legs, the weird wispy white hairs that grow in the interim while I wait for my hair to grow back, being fucking exhausted 24-7, the weird smells in my nose and the fucking metal taste that hardly ever goes away.

But let’s review where we are at before I continue. My CA 125 number is still in the normal range, which is good, but it didn’t go down for two treatments and it went up this week, so I’m a little anxious. My blood tests are good, but my counts are understandably down, especially my hemoglobin and my white blood cells, which means I am ultra-susceptible to infection, in addition to being exhausted. I’ve been watching my temperature all day, because I started running a low-grade fever last night, I have an earache, and I can’t stop sneezing. What did the doctor say during our last visit you ask? Well, he thinks that the chemo will have done its job, and I will start hormone therapy after this last treatment as long as my scans look good. Ideally, the tumors will have disappeared, or at least shrunk significantly. It will still be contained to the area where it started and left the rest of my body alone. We did talk about the surgery option, and that’s never gonna happen. He said I’m not a good candidate, and he said it wouldn’t be a positive experience for me even if I was a candidate, so what does this mean? The tumors stay, no matter what their size. His goal for me and my treatment is give me a good quality of life. He did say I am not dying at this time – I will still make it to the OWTH show in Philly in September, and he will let me know if the prognosis changes and I am dying. He definitely said he would let me know if I was dying. So no dying. As for my plan to have grand-babies if that is what Andy and his life partner decide to do, Dr. K said there were too many variables for him to guarantee that could happen, but I definitely will make it to OWTH in September. That means I will also probably make Halloween and Thanksgiving, and Christmas this year. More than likely, I will be around longer than that too. It doesn’t sound like my demise is imminent at this time. These are all good things.

So tell me then, why am I so unhappy? When does this new lease on life shit come around? It didn’t happen last time, it’s not happening this time, and it’s very disheartening. I know a lot of this has to do with my exhaustion and my inability to do a lot right now, but I also know that if these tumors are not gone, or drastically diminished, I’m a time-bomb. According to my Dr., my cancer is atypical of endometrial cancer. It should not have come back, but it did. It should not be responding to chemo, and it is. It’s not doing anything that endometrial cancer should do. It’s quite possible that the cyst was always cancerous, but it never showed any signs of malignancy until this last surgery, which is bizarre. It’s my own special type of endometrial cancer. How fucking lucky am I?

I didn’t want to write anymore about cancer. It’s just not as funny this time. It’s old and annoying. I am much more than this disease, but right now it’s the only thing that I can think about. At this point, I have so little energy, I am excited that I can make something to eat in the microwave. I made baked hot dogs for dinner the other night and needed a nap afterward. I need a nap after I take a shower. I can get in the car and go places, but it is work to get out of the car and go in the house. If I can’t drive through it or get it all in one store, it doesn’t get bought. Sitting up for extended periods is tiring. I don’t want to sleep all day, and that seems to be all I can do. Thank goodness for the DVR, because I fall asleep during nearly every show I try to watch. I am surprised I didn’t fall asleep eating or driving yet. This disease is a monster. After my last chemo, I had these weird pains all over my body like a whack-a-mole of pain – there’s a spot on my foot that still hurts, and actually feels like I broke two toes, but when I actually touch them, there’s nothing wrong. I’ll fall asleep and then suddenly, bam, a fiery pain rocket fires in my leg, and I’m awake. Then the restless foot thing happens and I’m whining for an hour trying to get back to sleep. My medication helps, but sometimes I would like to just have a clear head for a few hours. I keep telling myself over and over…just one more. There’s just one more treatment – please let there only be one more treatment.

Opiates make for weird dreams throughout all of this. Most of them are weird in a good way – like I want to go to back to sleep to resume them. There are also weird dreams when I am not taking them, probably because my brain is bouncing back from being in the poppy cloud. Last night I had a really sad dream though and it’s been hanging around all day, as if now even my sleep is conspiring against me to keep me from waking up with a smile on my face. Meditation, chanting, sunlight – I am really trying to keep the black cloud away, but it’s not working out as I planned. Don’t get me wrong – I am still really okay with the whole death and dying thing – I still feel like life is trying to cheat me – but whatever is going to happen, is going to happen. I mean, I could step outside and step on a Shenandoah splinter, and get hep c. I could be hit by an unattended, unoccupied, runaway vehicle that rolls away from near the One Stop. I could choke on a grape. I’m OK with that – what I am not okay with this uncertainty, and the fear. I’m not fearless. I might act it most of the time, but in my bed – I am scared little girl, who is afraid of what might come – not the death part, but the being sick part. I don’t want to be any sicker than I have been. Again, my future is now going to be controlled by my access to health care.

There is plenty to be grateful for though. We now have a dryer again, thanks to Crystal, so I can at least watch and dry clothes now, even if I don’t have energy to take them upstairs. Andy cleaned the kitchen, sort of – now if I can get him to take the recycling to the recycling center. The rest of the house is a shambles. It’s spring. Things are turning greener. Kellie hung out with me at my last chemo and let me beat her at scrabble. I went out to visit Paige and Preston and Kenny. I had some pudding. It was good. It’s not all gloom and doom, but I need to vent what I feel here, because in the tower, there’s no one but me to talk to. It’s not easy being positive when you don’t know what’s next – I do what I can. Mostly I am happy and laughing, because what else is there to do, but alone, I am reminded that life has not handed me an easy go of this. It’s not fair and it sucks, and it’s so easy to be on the outside looking in and think that there is an end in sight – there is, but like the rest of life, it’s all fucking gray – not black or white, or anything I can hang my hopes on. Sure, the glass is half full, but in my world, someone will come along and poison it, just to keep me on my toes.

Sounds like the dryer stopped, so I should go throw the blankets in, so I can have fresh clean blankets to wrap around my walrus body once I take my medication and drift into a medicated slumber. I want to get past this disease that has overtaken my life, and focus on politics, feminism, and social injustice. ( I know you can’t even wait for that). Plus my eyes are getting weepy and tired, and want me to rub them non-stop until they are sore and red.

So that’s it for now my friends…I’m just gonna quietly post this, because this one was all for me, just to help me process my frustration. As with everything this will pass. Be well.

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2 responses

  1. I cannot even imagine what you are going thru. just know that Ron and I think about you every day. praying that all will be better real soon. big hugs to you. god bless

    17 April 15 at 8:11 pm

  2. Anonymous

    thinking about you….

    17 April 15 at 10:07 pm

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