At least I got up again

It’s October 29th, 2020. The Day before Beggar’s Night, which is the day before Halloween or Nevada Day if that is your preference. Today was a cold day, some 15 degrees below normal. Of course had to go out into it this morning when it was at the coldest. Such is my life I guess.

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I fell yesterday, a pretty nasty fall at that. Haven’t fallen in 5 years, I was due a good fall. I banged up my already bad knee, put a hella bruise on my right shoulder, and bit thru my upper lip. Today I hurt, I didn’t hurt much this morning but by afternoon I’m aching. Feel like I got hit by a truck. Must learn to not trust my right knee (my bad knee) cuz it locked up when I was hurrying and then I went down. Oh well. It is still mask season, no one needs to know that doesn’t need to know.

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Today went and had blood drawn. My hemoglobin was 9.3 which is good. Not falling fast at all. My platelets are 15, which is problematic. My platelets were 35 on Tuesday. I am dropping platelets ungodly fast. Which means, by Monday (my next lab work) I should have platelets of 1 or 2. SCARY. I’ll be ok, just a little upset that they wouldn’t give me platelets today.

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Now I do not have any medical appointments for a while. Next one I know of will be Monday getting platelets and maybe blood. Definitely platelets. After that I have a MRI of my lower back, looking for ghosts (not literally). When you get the 3rd cancer I have, sometimes little shadow thingies grow in your lower back making your movement difficult. Since my movement is difficult, makes sense to check for them. If I have them, its a quick radiation treatment and I will be able to walk better.

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Dr. Wehbe agreed to help me get an electric wheelchair. I especially need one now, cuz walking on my bad knee hurts like crazy. And I can’t wheel a regular chair with my shoulder all bruised up. So, an electric wheelchair seems to be in order. I have to find someone to put in a ramp for us too. 3 steps and a door block me from being outside and making it inside. Mom suggested that I contact the Leukemia and Lymphoma Society about finding a contractor to put in a ramp. Might be able to get it on the cheap that way. One way or the other, I am going to have an electric wheelchair before the end of the year.

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Teresa has decided that we are cancelling all unnecessary trips to Mayo for the rest of the year (I THINK). We had a palliative care appointment that set her off. The palliative people did much of nothing for us (Not their fault). So that is the first appointment on the chopping block. Then there is some tests (my 2 year tests to be specific) that Teresa feels should have been run back in May. So, instead of going to Mayo for a few days right before Thanksgiving, we are staying home. Unless Dr. Alkhateeb calls or messages with some treatment, I think Teresa is serious about not going and I am cool with that.

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Hmm, my good knee if hurting too. Will have to check it for a bruise.

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Peace, Love and Gummi Bears to my friends. May you have a most joyous Halloween.

9 hours in the ER

We spent 9 hours in the ER on Sunday evening. It was an experience I don’t want to repeat anytime soon. Why we were there will be under a TMI shortly.

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It’s Monday October 26, 2020. COLD, WINTER COLD. Someone has mother nature all confused. We seem to be skipping fall this year. Or so our 3rd snow this year is the new Iowa.

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Mom didn’t come to visit after all. Me spending 9 hours in the ER thinking I would be admitted. That would have just messed up her visit. So we are rescheduling.

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Had a phone appointment with Dr. Eastin today. I really like him as my shrink, he listens, he asks good questions, and he obviously takes incredible notes. Better than any shrink I have used before.

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TMI ALERT ****** TMI ALERT ********* TMI ALERT

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OK, here’s the skinny on why I was in the ER. And the aftermath.

I hadn’t had a bowel movement in 2 1/2 weeks and it had started to get painful. So, after trying EVERY laxative we could find, the ER doc suggested GoLyghtly, which is the laxative/drink they give people heading in for a Colonoscopy.

Well, nothing done in the ER did anything for me. So we went in to this GoLyghtly with a grain of salt. Well, we were down to the last glass, when finally I had the bowel movement to end all bowel movements. Needless to say, I feel considerably better now. All it took was just short of 3 liters of GoLyghtly. My stomach is stomach shaped, not squared, it doesn’t hurt to touch my stomach. Now, if I could quit having bowel movements (now that I am mostly cleared out) I’d be a truly happy man.

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END Of TMI **************END OF TMI ****************END OF TMI

Tuesday is supposed to be the coldest day of this coldness, so of course I have to go out. First I have to meet with Krystal (One of Wehbe’s nurses) about the situation covered under the TMI. Then I have an anti-pneumonia breathing treatment. Then we are stopping by Wal-Mart, and finally grabbing some lunch and home around 2. It’s gonna be cold and miserable outside.

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7 days of chemo DONE

I made it thru 7 days of this chemo. My stomach hurts from the shots, but its all good I guess. Didn’t think Dr.’s Wehbe and Alkhateeb would intentionally put me in danger, but now my platelets are getting dangerously low and they have me on chemo than drops platelets. So, next Tuesday I will probably go in for platelets and next Thursday or Friday for blood. Yay, rah.

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It’s Friday, October, 23rd,2020. And it be COLD. Surprisingly cold. Coming close to lowest highs every day. Gonna stay this way until next week. Where it will be back in the 50s, until mid next week, we are having feels like temps in the teens.

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Welp, I am getting a wheelchair cuz of my walking problems. I was supposed to get a electric wheelchair, but the nurse screwed up and just said wheelchair on the prescription. So, we have some delay but it’ll be fixed sometime soon. And then I will have my very own wheels in the shape of a chair.

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Do to the pain, I am not eating much. This has caused me to lose considerable weight.. I lost about 20 pounds in 20 days. I weigh 191.1 lbs now. Before the lockdown and subsequent wife imposed lockdown, I weighed between 200-220 lbs.. So much for the lockdown +15.

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Mom arrives Monday evening. Cool beans. I’ve really been missing my mom. I miss my brother too, but especially my mom. I was thinking of going to visit them around Christmas, but now I don’t think that’s gonna happen. It’s just a chemo Christmas. Yup, chemo is scheduled for the week of Christmas, I think. Even if its not, I dont have the energy to fly out there right now.

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Low Hemoglobin do not feel bad

Tomorrow marks day 7 of this chemo run. The longest pure chemo run that I have ever had (not counting induction or consolidation. My stomach is tender from shots. I am considering taking the last shots in the arms tomorrow. I just don’t know.

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Dr. Wehbe agreed to write me a prescription for a wheelchair cuz I am still walking like an old man. He said to take the paperwork to Hammer Medical Supply. Hammer sold out a couple years ago. Ah well. I will go to the new medical supply place. The one that bought Hammer out.

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Mom is scheduled to visit on the 26th. I hope there is no problem getting in and out of Denver. She is only staying till the 30th. Another short visit from family. But a visit none-the-less. It’ll be mice.

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I love Teresa working from home. I couldn’t ask for a better caretaker. It’s weird though, come 3pm I start feeling like crap. That is when she springs into action. Getting me snacks and drinks. Then again ,3pm is about the time my knees start to really start to hurt.

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It is almost 3 now. I am getting tired. Got up at 7 this morning in order to make our appointment this morning. But weirder still is my 6:30 pm order for a back MRI coming up.

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My Hemoglobin was 7.4 today. We chose to wait till tomorrow before we did anything. Heh, I feel pretty good all things considered. So tomorrow I will get 2 units of blood and then hopefully have enough time to go by the wheelchair place. Should be no problem. Morning blood appointment is at 7:30am and the whole infusion process should take a little over 4 hours, should have plenty of time to get the infusions and then get the wheelchair.

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It’s a little after 3pm, my brain has started to shut down. So, I am gonna take a nap. I hope all you readers of my blog have a good afternoon. Let me grab a video.

Blizzard like conditions in October

It’s October 19, 2020, and today we had blizzard like conditions. We got about 7 inches of snow. Luckily the ground was still warm enough so it didn’t get bad everywhere. Supposedly the freeways were hit hardest, go figure. Anyhow, we left home this morning to a light snow and came home to a lighter snow, but you can easily see where the snow was.

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Saturday night’s finale of Jason’s Dungeons and Dragons Eberron campaign end up getting cancelled 1 hour in. So, now I have no idea when I am gonna feel up to playing again. This chemo sucks compared to the last chemo.

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Speaking of this chemo. It is making me nauseous and a little listless. Neither side effect is that bad, but they are annoying, specially together. I still get confused really easily. And that makes me anti-social. Hoping some of these side-effects go away quickly.

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My CBC was weird too. My hemoglobin which was supposed to take a hit went down .1 points and my platelets went down 3 points. No biggie on either end there. I should need blood barely on Thursday but might not.

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I have an video appointment with Dr.Eastin tomorrow. He is in for quite a bit of information. But mentally I think I am handling things well. So, hopefully he is on time, So I can make my 3pm chemo.

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We see Wehbe early Thursday morning. Among a few other jubjects, we are gonna ask him to get approval from my insurance to get me a wheelchair. Yeah, it is time, Ever time I walk, my knees hurt more and more, and my legs seem to be getting weaker.

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Mom arrives for her tradionally short visit. She will be here from lateish on the 26th till mid-evening on the 30th. I would love for her to stay longer, but she is trying to create a life in Colorado or getting prepared to move back the Region. Plus she has stuff she has to take care of on the 31st.

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Well, I am tired, I am going to go back to sleep. Peace, Love, and Gummi Bears.

Teresa does good and we have the worst timing

It is October 17th, 2020, the temp is h0vering ar0und 50degrees, which feels nice. Yesterday was chemo day 2.

Weird chemo, requires 2 nurses , each giving a shot into my stomach simultaneously. And when I say simultaneously, I mean 3,2,1 push and push at the exact same speed. It’s kind of impressive if you ask me. I get 5 more next week. Hopefully these will do some magic to cancer #2 and I will be able to live for a few more years., which is all we want.

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Teresa won Employee of the Year again this year. She has won 5 of them, 3 runner-ups and a few Silver Stars (which was the award they gave before EotY awards. I am so proud of her. We picked up her goody bag today, it contained a bunch off junk and cool cup. Better than nothing I guess.

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We have to buy new windows. Not the OS, but the things you look through. Damn, they are expensive. 8000 dollars, oof. And that doesn’t replace them all. But the ones that are being replaced are because they are falling out or about to fall out. We get a new bay window in the kitchen, And a double window in the front.

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The new chemo sucks compared to the last chemo. I officially feel like crap and there is no real reason for feeling this bad except the chemo. The shots don’t hurt though , so that is something I guess. I hope this chemo is a temporary thing and after it jump starts my marrow I can go with something easier on the rest of me.

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Anyhow, we are playing Jason’s Dungeons and Dragons Eberron tonight. I feel up to it finally. Might get too tired during the middle of the session. I get tired and bed ready by 8:00-8:30. Hoping I will be able to muscle thru it, I owe that to everyone. So tonight we play.

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Various stuff news about new chemo

It is October 14th, 2020. The weather people are saying this is going to be the last nice day this year. It’s currently 71degrees with a slight breeze. Can’t ask for better than than in the middle of October.

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I start chemo again tomorrow. This time its a shot in the stomach and a pill. No sitting for multiple hours. However, this chemo is gonna make me need blood and platelets more often. Not happy about that. Blood tests will be on Monday and Thursday. Not happy about that either. But I made a promise to Teresa and my mom that I would do whatever I could to survive. At least they are doing something. I’m bored just getting blood every 2 weeks, knowing that nothing was being done at that time, so I would never get better. This chemo doesn’t promise that I am going to get better, but at least it is somehing.

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My pain level during the day starts as a 2, moves up to 4 during the day, then hurts like Hell at night. Rinse repeat. And my non-related ache and pains raise their heads at night. So, right now I suffering thru the night, but doing ok during the day.

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My mother is coming to visit again, she will be here in 12 days and will be staying until the 30th (So, 2 full days and a bit). We told her we don’t drive very much, so she can use Teresa’s car and Teresa and I will drive mine. Saved her $244. And money is money. I am happy she is coming to visit.

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Just found out the schedule for my chemo. Thursday, Friday and then Monday, Tuesday and Wednesday. And I can’t expect it to take so long. Then no more chemo for a awhile depending on how this little run goes.

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Dr. Alkhateeb called Teresa yesterday. They talked for quite a while. The take away from Teresa’s replay of info for me is I now have the trifecta of cancers and one of them is bound to kill me quickly. Teresa said “He never said that.” Well, its what I interpreted so blah. I guess we will see.

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We are finally finishing Jason’ Eberron Dungeons and Dragons Campaign this Saturday. WOOT. Prednisone and Lexapro to the rescue. I feel good. So we are gonna play. This might be the last D&D campaign I get involved in. Don’t want to commit to anything and then get sick and/or die. Heh

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I should be getting blood tomorrow. Pretty much guaranteed. Then I think we are adding an office visit on Monday for more labs. Then Thursday, Then Monday, etc.. cuz the chemo I am going on wrecks whatever is in your marrow. And will keep going for about a month (after the 5 day session). Translation, if we are too slow in catching falling numbers, well you guys are smart enough to figure out what happen.

A bit about cancer 3

Heya folks. I hope all your days are going well for you and yours. It’s Wednesday, November 11, 2020. And I can’t wait for 2020 to kiss my ass goodbye.

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The pain level today was a solid 8, because I dropped my Prednisone and didn’t take it till around 3 o’clock. When I woke up at 5 something, Pain was down a a 3. So, I am back on my hood buddy prednisone and I am feeling betterish,

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My diagnosis is Mileofibris. A very rare cancer you can only get from having too much treatment for other blood/blood cancer. In a nutshell, it takes the soft tissue in bone marrow and hardens it. And it can’t be relieved by standard pain meds. Thus the steroids. Prednisone and a half-fill of anti this and that and there is still no world for me face.

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Still in isolation from Cove (per Teres’s orders). I have been on 1lockdown since March, but its all good, Teresa has been here since March with me. So it’s been great vhaing here around. I honestly don’k how how I woud have survived 2020 if it wasn’t for her.

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Well, I am still on fatigue and low on desire to do anything.

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I managed to a get a week off except blood tests, which are weekly .I have zeo doctor visits So, no doctors visit this week woot

Not ready to talk about cancer #3

They gave me prednisone to deal with the pain, I started it Yesterday and as far as I can tell, it’s not doing anything. I still can hardly walk. And the pain level is at least an 8 (on the 1 to 10 scale). And this when of course when my Enlarged Benign Prostate declares war and I had 20 make 20 trips to the bathroom last night. Talk about pain when I finally woke up.

Prednisone is the only med they can give me for this pain. Good news is that prednisone makes me happy and hungry usually. Which is opposite of what prednisone does to other people. So, I guess it is ok. I just needed to start working asap.

Teresa is being super about taking care of everything for me. Drop my mouse out a reach, she jumps up to grab it for me. She gets me all my drinks. She is being super woman again.

OK, primary diagnosis AML (cured for now, will probably be back)

Secondary diagnosis MDS (still lurking around, but not doing much)

Tertiary diagnosis Myelofibrosis. (Hurts as the soft tissues hardens)

3 cancers by age 50. It sucks. Don’t even think about getting one.

this blog entry started as wonderful joyful prednisone. Then talked a bit about my wonderful wife, then it was heading downhill. I’m not ready to talk about my 3rd cancer, so I am cutting this short.

Can not catch a break

First things firsts, an apology for not posting in forever. I am very sorry if I had anyone worried unnecessarily. I assure you the next part of my life is gonna suck, but without you, my friends and family, it would be unbearable.

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It is officially Octobrt, 7th,2020, a Wednesday as a matter of fact. It has been another beautiful day here in Adel. The sun is shining, there is a nice breeze. I wish al of October would be like this, but we all know where it’s headed.

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THE MAYO TRIP

Feeling like a lot longer than a week ago to me. It’s not though as a check of the calendar says it exactly one week. While there I had another bone marrow biopsy (which I will get into later.Blood tests happened, they seemed to take a lot of blood. Thru the nurse off by making her take blood not thru a port. Something they don’t do very often anymore.Oh, I must tell you that having an abdominal study by a master is on mu list of recommendations It would have been the most fun test I have ever had if the office was do damn cold. But even cold, I enjoyed it.

THE EXTRA DAY

We ended up spending a 3rd day at Mayo. Well, part of a third day. We went to visit with the palliative care people. They are trying to help me get my life back together. Firstly by taking care of the pain that my legs has become. We are working on this together.

THE BADY NEWS FROM THE BIOPSY

For the second biopsy in a row, the technician reported it was very hard to get the sample. Turns out I possibly have a 3rd cancer Acute Meiosis Fibrosis. Which is the hardening of the soft tissue of the bone marrow. Have some more tests coming soon. There are some chemotherapy that might help. Waiting for more information from my Doc. Seems to me I do a lot of waiting for info.

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That is it for me now.