Hectic's Blog About Stuff

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.

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.

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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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.

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

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.

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.

OK, Its chilly later fall weather and I am not appreciating it as I should. It’s just September 29 not November is what I am complaining about.

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Last Thursday I had an emergency blood transfusion. Not really emergent to me but they got me in quickly. 2 units of blood, with matching time took us about 6 hours. Teresa being able to be there with me makes it go quicker. Anyhow, my blood was at 7.4 when they called me to the hospital, 8 being acceptable, 12 – 14 is normal range. Oh well, this is my life mow.

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Dave B tried to message me while I was getting blood. As a general rule, I am cranky to the point of rude while I am getting blood, sorry Dave.

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Tomorrow is our first trip to Mayo in quite a while. Featured on this trip another Bone Marrow Biopsy on Wednesday. This Biopsy will go deeper into the chromosomes and the tp53 likely mutation.

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I am hoping Dr .Alkhateeb has a solid plan when I see him on Thursday. I do not want a wishy washy doctor, and I just want the truth about what is going to happen to me. I think I deserve those two things.

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Well, I don’t have a lot to share at this time. Should hare more after Mayo.

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On September 22, 2020, the pain doctor did her job and put me in more pain. I guess it was to see how much pain my knee was really in and I guess I passed cuz sometime in the near future I have an MRI scheduled on my right knee and an x-ray scheduled on my left knee. She didn’t beat on the left leg, somewhere in translation it became just the right knee. So, we are mainly focusing on the right knee.

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Again I apologize or the big gap in posts. I assure you as of now I am alive and in good hands. (No, I am not at Mayo yet). I am having blood tests weekly at Dr. Wehbe’s office. And as of right now I am getting blood every two weeks. I’ve said it here before, I would trust doc Wehbe before I trust any other doc in the world. Now, I don’t always trust what doc Wehbe has to work with as far as testing. But given a set of answers in front of him, he will always given me the best answer that he had at his disposal.

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The question is, did MercyOne screw up the Bone Marrow Biopsy and give me a false reading. That would not have been doc Wehbe’s fault. He will be just as frustrated as everyone else if they made a mistake.

Now, in reality, I don’t think that any mistakes were made. Just double checking on October 1st. Getting those results around October 7th.

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Guys, it hurts to have my laptop well in my laptop. Even under an extra pillow. So, I am cutting this short. I will promise to write more often in short posts. It’s all I can do.

September, 15, 2020 turned out to be a beautiful day. The sun has been out all day without it getting hot or humid. Gotta love these beautiful Fall days (even if it’s not fall yet).

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Dr. Alkhateeb didn’t trust the Bone Marrow Biopsy given to me at Mercy (neither did I really). So there is hope that I shall live for a while longer. Another Biopsy is scheduled for the 30th of September up at Mayo. Realistically it should have identical results, but there is always hope until there in none to be had.

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While we are there, we are having some more routine tests ran too. Seems that every time we go to Mayo they run tests on me. At least we weaseled out of the Pulmonary Test, it is the only test I actively hate. And now with my knees as bad as they are, I can’t do half the Pulmonary Test anyway. I can breathe just fine thank you, got no asthma in me.

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Talking about my knees. My knees regularly hold a pain score of 7 in the right knee and 4 in the left. Except for the hour or so right after I take my pain pills where they drop to a 5 and 3 respectively. Sure am hoping that the pain doc I see a week from tomorrow believes me and will prescribe something a little stronger. At the rate I am going, I will be the dying man in the wheelchair, before too long.

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I have relost my appetite. I’m down to sub 200 pounds, much to everyone’s dismay I’m just not hungry at all. First lecture I received is from Teresa. She really hates when I drop below 200 pounds. I am not built to weigh less than 200 pounds.

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Well, if you know me at all, you know I HATE not knowing. This cancer stuff is rapidly driving my crazy (er). I just want to know… NOW. It’s just nor right to put this much pressure on one crazy man and his loving wife.

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I wasn’t trying to bring false hope to anyone with this post. I do believe that there is a chance that the doctor who did the biopsy at Mercy could have made a mistake, but I am not saying he did. I ask for prayers and good thoughts same as always.

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Peace, Love and Gummi Bears to all my friends who take the time to read this and spend a moment to send a prayer or good thought.