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How ironic that Fathers Day is one day after the 1 year Anniversary of my Fathers death.  Flag day, June 14th will be one year.  In some ways it seems longer, in others it seems just a few months ago.  There is no “blunting” of the pain, just a gradual acceptance.  No one can describe in full how it is to lose a parent.  I liken it to seeing a beautiful view of the mountains, getting your camera, and being unable to capture the moment.  There is no way to tell anyone else the full blood and guts truth of how you are doing, or how you are feeling.  But, the support of those around, is appreciated AND so very necessary.  Without a hug, or word of encouragement, one would simply dry up, shrivel into a shell, a husk of nerves.

I carry on…sigh…

I’ve become the child of someone dying with cancer.
No longer a nurse.
No longer someone who knows someone who “has cancer”.
Suddenly, to the very marrow of my bones I, well, ache…for lack of a better word.
This is a feeling you can’t really describe easily.
This is a sinking, nervous despair feeling that only anyone who has a parent or close family member dying of cancer would recognize.
Dad is shrinking by the hour it seems. Cheeks sunken in. Verbalization at a minimum. Pain seems to be under good control. He is walking with a cane now. Output is poor. His eyes look resigned to the fate at hand. I guess that’s what I noticed yesterday. What often triggers my tears.
This is so very very hard.

I think dad has pneumonia or a virus. He seems weaker and his voice is a bit hoarse. He has no energy. He doesn’t want to eat…an ongoing problem. He requested his nebulizor medication. He is taking Darvocet frequently…I don’t know if he is having that much pain since his last thoracentesis or…I don’t know. He had some Levaquin left and started on that…but…I think he needs to go to the Dr. Of course he threw a big ass fit when I told him I was making an appointment and taking him. NO NO NO he told me.
okay…I get it. Don’t help you
when I know better
this has been a day from hell anyway and now I feel even more of a failure.
some nurse/daughter I am

Dad had a left lung thorecentesis yesterday. For him, it was extremely painful…the worst one yet. He said, “I’m not doing it again”, and I think I believe him. Maybe there will be no need for it. They drained off 800cc of fluid this time. He took 2 Percocet for the pain and I think those meds helped him.
He is to get Zometa on March 9th or so.
I guess he is not choosing to do the parathyroid surgery.
He is depressed.
The last time he went to the Dr. (and I couldn’t go to this appointment) the Oncologist said things that were depressing Mom said….like…”If I were a betting man I’d bet this cancer will come back”, and “If you are going to be around for 4 or 5 years more I would suggest the surgery”…and I guess the way he said things he was looking down at his hands and just…depressing.
Dad’s weight is 140’s. He isn’t eating. Doesn’t want to.
But his scans are good. State…No sign of cancer.
Although his Calcium remains on the high side. 11 this time.
shit, I don’t know.
Bastard Dr anyway.
Bastard Cancer anyway.
Fucking cigarettes anyway.

Dad had a CT scan with barium swallow today.
We went up to Kearney, did the test, got groceries in Holdridge, and came home.
We go back to Kearney on Monday for the results.
We have not received the results for the test ordered by the endocrinologist either.
Do we want to or???
I don’t know.
Sometimes ignorance is bliss.

We went to the Endocrinologist in Lincoln today. The Dr was funny and direct. He explained that he needed to have proof of hyperparathyroidism and wrote orders for bloodwork, 24 hour urine test and bone density tests. He also explained that the only places to have “mini surgery” ie laproscopic removal of any nodes, was in Tampa Florida or Wisconsin. Then, he explained that the surgery was still only a 1 day affair and tried to be positive about it. We will arrange to have all these labs done and then we are to call the Dr in 2 weeks, if we haven’t already heard from him by then. This Dr. felt that Zymeta every month was a bit extreme. I hope he reccomends we taper that off.
Dad weighed in at 147 pounds.

Do you find it odd that the word “cancer” and “cancel” seem so alike?

We had an appointment to see an endocrinologist today, in Lincoln.
Dad canceled the appointment.
Tomorrow is his birthday. I don’t know if that is the main reason he wanted to cancel but I’m thinking it is.
It’s hard to believe that 14 months ago we were just begining this journey.
We’ve been through 33 radiation treatments, 4 “cycles” of Taxol/Carboplatinum, at least 5 “cycles” of Taxotere and we continue with monthly Zymeta infusions(for hypercalcemia).
Dad has random occasional mid left “rib” pain for which he takes Darvocet with relief. Maybe 0-2 times a day. He continues to fight lower leg edema and is on 80 mg of Lasix and 50mg Aldactone (which he occasionally halves the dose of both depending on how he feels. He no longer uses any O2 at all. Very rarely (maybe 1 time a month) uses a TJN (twin jet nebulizer) treatment. He gets little to no activity for reasons mom and I don’t understand. He has no appetite. He has pain in the ends of his big toes. He doensn’t really seem short of breath at all. He has  occasional constipation. The skin of his lower legs is dry and flaky from the edema that comes and goes.
He is smoking again.
We don’t know what is next for sure. We will go to Lincoln next Wednesday for the appointment with the endocrinologist. Dad is scheduled for a CT scan this month to check the lung tumor area.
Right now the oncologist calls Dad cancer free. We are just dealing with all the other problems that go along with the diagnosis of cancer.
I think there should be a 12 step program for being diagnosed with cancer. You walk into a room…you say, Hi I’m _____ and I have lung cancer. When I was 12 I had my first cigarette. It was love at first cough. blah blah blah

Once labeled a cancer person always a cancer person. People put their eyes on you and wonder…how long before the disintegration…
People ask constantly…”How is so and so??” and stating “Well so and so, you look so good!”, hanging on the edge of their seat, waiting to nod in pity while turning to their friends and saying, “Doesn’t so and so look terrible?”.

Went to Kearney to the oncologist yesterday. Doc thought maybe Dad’s calcium is staying high because of parathyroid involvement…perhaps a node there or something. If he could get that out, then he could quit the monthly Zymeda (which is now making Dad feel achy and crappy) so he wants Dad to see an endocrinologist. They are trying to set that up now. Of course there is no such animal as an endocrinologist nearby or anything. Omaha or LIncoln.

Both holidays have now come and gone.
Dad continues to fight “fluid” issues but hasn’t been needing O2 at all. I suppose he needs his lung “drained” again. After the last thorecentesis, done here not in Kearney, Dad says he would rather drive up and have it done there instead of locally. He had much pain afterwards. Did not really get along as well. He has an appointment on Wednesday with the Oncologist in Kearney. I think, a scan too. Not sure about that. The fluid showed no cancer cells in it. Yayyyyy!
Dad is having some random pain for which he is taking Darvocet with relief. His weight conts to remain on the lower side (150’s to low 160’s) and he is requesting suspenders! I will have to be on the lookout for some neon ones. ha ha ha

July 2020

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