Well, December has started out very crappy. Doctor Wehbe, the man I trust most in my life, had to tell me that I am dying. I survived cancer for 5 years, but my poor body can’t handle much more. He was talking in weeks and days. I kind of got used to the “yeah, yeah, I am dying” but it wasn’t killing me. Well, now its become an in my face, I am dying. I wish I could say I am numb, but I am definitely not that, I am more like every emotion thrown together.
That was told to us, after I nearly had an asthma attack yesterday while doing the pentamidine thing. Should have seen the doc before and I wouldn’t have to have the pneumococcal pneumonia treatment.
Anyhow, it’s 4am on December 4th. The electric wheelchair guy is coming at 10. Guess I can tell him I don’t need one now. I have another standard wheelchair coming from Amazon on Monday. It’ll serve me these last few days.
My mom and brother are coming. Sucks that it comes to this to get them both to visit. They’ll be here from Sunday 5:15pm till Thursday 7:30am. At least I get to see them both before the end.
Dr. Alkhateeb wants me to come up to Mayo for one more bone marrow biopsy. Hoping to see a glimmer of something in there. heh, I seriously doubt Dr. Wehbe is wrong. But off to Mayo we shall go, one more time.
Dr. Wehbe has said he will keep me on infusions to stay alive for as long as my body accepts them. So Saturday 9am I have platelets going in. My hemoglobin is holding on, my platelets not so. They need to get on board with the plan.
I guess I am going to die with only half my bucket list done. Hardee’s filled the first part by bringing Western Bacon Cheeseburgers from Carl’s Jr to Hardee’s. Good on them. However I have no chance of getting a Macho Combo Burrito from Del Taco. Oh well.
Welcome to the December 1st blog entry by yours truly, Hectic. Today was both cold and nice, as well as painful (I will explain later). Ya know something 42 degrees without wind isn’t that cold, but my morning started out at 18 degrees, 18 is cold when your unable to control you own body temp. OH well, it was a busyish day for Teresa and I.
The day started at 7:00am, to get a shower and get to the infusion lab at the hospital by 8. With having to check in for the new month it took me till exactly 8am but that is what my phone said when I was sat in the chair. 1 bag of blood was on the order for today, after getting platelets and 1 bag of blood yesterday. There was some confusion from the carry over orders going to a new month. So it took a little longer than expected to actually get the blood. But I got it, and 3 hours later we were out the door.
I was confused about what day it is all day today. I thought for sure it was Wednesday. Anyhow, I got to go spit in a cut to be tested for covid again. 8 more moths of covid screening and I will be done with the potamidine process that I am getting tested for.
We then had Jersey Mike’s subs (specifically their philly cheese steaks) for lunch. Yes, if you ever come visit and are looking for a good (not great, but really good) philly steak, would be happy to take ya. there. It was a good filliing lunch.
After lunch we had an appointment with the people selling the electric wheelchair and the Physical Therapist company who had to check me over, making sure I wasn’t running a scam to get an expensive wheelchair. Anyhow, I took his demo model of the wheelchair for a quick spin… Hectic like. Then he left and Haley the PT person took over, she asked some questions and then had me do some measuring exercises which hurt like mad. 4 pain pill 4 tylenol day. But anyhow, she said that she approves, and will get the paperwork to the first guy asap. S0, there is an outside changed of having my chair before the end of the year. Insurance reasons. It’s gonna be red and it looks sharp. I forget the full model name but it was something spider. Way way cool Junior.
Then we came home and I failed napping 101 even though I was dead tired. The pain had set in, and I was/am pretty miserable. But I guess its for a good cause. Me.
So, no nap meant playing Skyrim: Special Edition for several hours. But the character I am enjoying the most just hit a bug and is stuck. So, I may have to remake her tomorrow, which indently a day off for me. And avoid the glitch. Yeah, she is only level 6, no biggie to redo.
In other significant NEWS….. Somehow I rated a home health nurse. So, we will meet Shannon on Friday. Heh. Never thought I would have a nurse come to me. Alrighty, it seems a little weird, so it must be all good.
The electric wheelchair guy said that the electric wheelchair is mainly for home use. Especially since we do not have a ramp. Once my chair gets to the house, that’s it. So he suggested a transport non-electric chair. I am just going to order a normal wheelchair from Amazon. It turns out I still have decent arm strength and I hope to not lose that too. So, we will have me buzzing around the house with the electric, and Teresa will be pushing me along OR I will be self propelling on the standard. It’s just that I can’t stand or walk very well. And these devices are to keep me from falling.
Welcome to my blog for November 24, 2020. Yesterday there was snow, today there was rain to wash away the snow. Warmed up a bit too. Not a whole lot but enough for it to be rain and not snow.
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Last Friday I got a PICC Line installed. So, no more IVs for at least 6 weeks, bruises are already starting to fade. Except for the petechial bruising I got last Sunday. UGLY. But it will go away too. They hooked me up with 2 bags of platelets on Monday. With platelets in tow, bruising should be minimal.
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Weird stuff is happening as far as my transplant is going. Chemo is causing me to be constipated and bloat. I never did shrink back to normal from the GoLyghtly incident. And now that I have had second round of this chemo, my stomach is growing and hardening. I want off this chemo, but I am not sure if there is an alternative.
Anyhow, the more disturbing thing going on, is that I reverted back to 0+ from A+. I am back to where I started from. All I can think of in my head is that I did have a graft failure when Dr. Wehbe called it. And Dr. Alkhateeb intentionally lied to us. That would suck.
What does all this mean? I do not know at this time. But neither issue is good news.
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Teresa and I are not having turkey and such for thanksgiving. Nope, not going to happen. We are having Sweet and Sour pork. Yummy. We had thanksgiving dinner when my mom was here. It was nice. Now it’s time to splatter tradition and have Chinese 🙂
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I miss playing Dungeons and Dragons, but I can’t right now. Can’t sit still for multiple hours. We were set to finish Jason’s Eberron campaign, but Jason got sick. It happens. I still hope we can finish it.
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Playing Skyrim: Special Edition and a bit of Civ4 Warlords. If you have followed my blog for any time, you know these 2 games are my fall back when I got nothing else going on. Having mental problems getting into either game very far.
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We ordered a sleepnumber bed, hoping the advertisements for it are true. It gets delivered on the 9th. I find out if I am approved for my electric wheelchair on the 1st. Pentamidine scheduled for the 30th. Lab visits every Monday and Thursday from here on out. Blood or Platelets usually to follow same day or next after the labs. Shrink appointment on the 7th. Staying busy, but still bored.
It is November, 18th 2020. A day which saw the temperature back up in the 60s. And day 5 of chemo.
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Well, yes, I had chemo today. 2 shots in the gut. I don’t even know what this stuff is called, can’t tell if it is doing anything positive for me. But for now, I will do this chemo and be happy I am still alive and able to get chemo. I have 2 days left of this chemo cycle.
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Something weird is going on with this chemo. I am getting nauseous almost every evening after the chemo. Thank you Dr.s Alkhateeb and Wehbe for prescribing me both Zofran and Compazine. Between those two meds I don’t suffer nausea very long. But the point that I do feel sick and have for the last 3 nights is significant to someone… Even if its just me.
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Mom’s visit was nice. She should have stayed longer. But hey, she had to get back to Colorado before WINTER truly hits. Mom, I love you. You are welcome here any time we can work out a schedule.
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There is no Thanksgivingfest this year. We would probably break a # of people in a building in a building without a mask, and definitely not social distancing. So, even if there was a Thanksgivingfest, Teresa wouldn’t let me go. Which is fine, better safe than sorry.
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Teresa has decided on Sweet and Sour Pork for dinner on Thanksgiving. It’s our traditional Christmas meal. I asked her what we would do for Christmas dinner… She gave me a weird look and said Sweet and Sour Pork. So, I get Sweet and Sour Pork for both big meals. YAY for me.
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Can’t wait for December 1st, on the 1st I find out (confirm) if my legs are thrashed enough to get an electric wheelchair. I am hoping that the chair I saw in the NaCara office comes in Red and not just Yellow. But I will be happy with whatever I get 🙂
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Tomorrow I get my walker for inside the house. Yes, I am 50 years old and stuck using a wheelchair and a walker. I feel like such a putz. But hey, I didn’t ask for Cancer, let alone Cancer #3.
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Tomorrow morning I have an appointment with Dr. Wehbe, we have no clue as to why we are seeing the doc, but it’s all good. Just a little confused why we aren’t seeing a nurse. Anyhow, at 9:20am lab work, then we see Doc, then I get my next to last day of chemo.
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Friday is last day of chemo for a month, and I hope things go right and I don’t feel too sick, on Friday, we are supposed to finish Jason’s Eberron campaign. First Dungeons and Dragons that I have played in months. I hope to get back into playing soon, but I haven’t felt good enough to run any games.
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OH well, I have babbles on long enough. Ifn I missed anything, heh, sorry.
It’s Friday the 13th on November, 2020. It has been a decent day. It was almost warm when we left Wehbe’s office today. All in all today goes down as a decent day.
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Day 2 of chemo. I felt nauseous before I went. So I took a Zofran. Then I had heartburn for no real reason for it. Dairy Queen Pretzels got rid of my heartburn. BTW, DQ Pretzels are the bomb. Anyhow, I don’t think the chemo had anything to do with the heartburn. I think it was just a bad coincidence.
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Chemo 4 Dat 2 went well enough. Still a little intimidating when 2 nurses come at ya with needles. Anyhow, it could be worse, they give me the shots in my stomach and not in the arm. Sometime during this chemo, my stomach will shed big long strips of skin. Kinda gross and itchy.
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Mom leaves tomorrow at 9amish. It has been great having her here. I really do miss her when she isn’t around. I feel sorry for her being stuck in Colorado with no friends close. At least she has Jim. But their plan to be back in Indiana in June or July seems solid. Not that I can visit at this time.
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We have to ask Dr. Alkhateeb to let me have a bone marrow biopsy at Mayo in January. Gonna ask him at the end of November. However, I think he is a little upset at us because we are really close to Dr. Wehbe. Alkhateeb’s last message included the phrase “You are being treated down there, follow his orders.” OK, we will do that, but I still want my bone marrow biopsy at Mayo.
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It looks like we are playing Jason’s Eberron campaign finale next week Friday. It will be good to finish think game finally. It’s only been a few months since I got sick again and screwed everything up. So, it’s time to get this done.
It’s November 11, 2020 and it’s around 48 degrees. The sun is shining though and I am spending my day with the 2 women who mean the most to me in life… My wife and my mother. Couldn’t ask for a better day in November.
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My mom arrived on Sunday. It feels so nice having her here. Normally I miss her so much, but right now I can just talk to her and be with her. She leaved Saturday morning and things will go back to normal. I will miss her, but I call her or she calls me about once a week, so it could be worse.
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Monday I had to go get Platelets, Thursday or Friday I will be getting Platelets again. My platelets are dropping at an alarming rate. It sucks, my arms look like they have been thru HELL. Bruises are abundant because my platelets are so low. My hemoglobin might need a boost on Thursday or Friday too, but I don’t think so for sure. 9.2 on Tuesday, have to drop to less than 8. We shall see.
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Teresa did me a solid favor today (which I was going to do anyway). She called NuCara about my electric wheelchair. Found out that next step is being evaluated by a Physical Therapy place to see if my knees are bad enough for an electric wheelchair. I sure think they are. Anyhow, now we wait for a phone call from the PT place (only certain PT places can do the evaluation) and then we go do that. Then NuCara comes out an measures the doors and hallways and me I think. Then I will get my electric wheelchair. I should have it before Christmas. A Nice gift from my insurance company.
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I have decided I want a port or Hickman catheter. My arms can not take this abuse. Like I said, my arms look and feel like HELL. Going to talk to Dr. Wehbe about this tomorrow. I a pretty sure I can get a port here at MercyOne, to get a Hickman I think I have to go to Mayo, which we are pushing off.
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Had appointments on November 25th but we didn’t want to go then, beyond the desire NOT to drive 8 hours, it’s week 3 after chemo and week 3 I feel the worst I am gonna feel. So, they moved them to January 7th. The only foreseeable problem is the week of January 7th is 3 weeks after chemo (I may have figured that wrong). Teresa said she would take care of it. I am so lucky to have Teresa as my wife and caretaker. She takes great care of me.
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Playing Skyrim: Special Edition and Civ4 Warlords. Both ancient games. Both games I love. Skyrim I am having problems comiting to. I get up to level 15 or so and then delete the character. Civ4 Warlords I forget to attack until it’s too late into the game. I really need a new game. Supposedly Starfield and Elder Scrolls 6 are gonna be Microsoft Gamer Pass day 1 launches. Didn’t know Microsoft bought out Zeni Max, thereby Bethesda until reading today. Anyhow, I don’t care who releases these 2 games, just hope I am still alive to play them. Not asking for much, just not to die too soon.
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Speaking of living, I hope to have my STILL AIN’T DEAD YET Party on August 7, 2021, at my mom’s home in Chesterton, Indiana. By then, everyone should have gotten their Covid Vaccines. And things should be back to normalish. Yeah, assuming Cancer 3 doesn’t kill me before then, it should be all good. Jim and Mom are planning on moving back to Indiana in June or July. So August is a good time to throw a party. Teresa will finally be making Lasagna to feed the masses and to save a little money.
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Well, we are doing Thanksgiving tonight for us and mom. Turkey, Mashed Potatoes, Stuffing, Broccoli, Fresh Bread, since none of us really eat desert, we skipped the pies. But I am happy with what we have. And I couldn’t ask for better company. Just wish my brother was here.
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You all have a good afternoon, evening, or morning as your case may be. I have rambled on for entirely too long already. Let me go find a video and then I will title and post this to the appropriate places.
Welcome to the last nice day of November. After today is cold and rain. Oh well, we almost set records every day of November so far. It’s all good. Oh yeah, today is November 9th, 2020 for the record.
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Mom is here, it feels nice. I am feeling ill, which is par for the course for visits from my family. I still got to spend some time with her and Teresa last evening. It just feels right. Only one missing is my brother, he has to work Wednesday. He is switching to graveyards and the way hi schedule turned out he got 5 days off, working Wednesday in the middle.
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I am up at 5am again. I don’t know why I am waking at 5am, but I am.
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Today I have my standard lab work. Hopefully I won’t NEED anything (we don’t know how platelets are gonna hold up). Got 2 units of blood on Friday so I should be good there. 2 blood tests a week, for the foreseeable future. Yay rah.
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OH, and with this chemo and super pills, I am losing my hair again. I shouldn’t go completely bald, but I ordered a blue hat to cover the top of my head. The hat will be here Wednesday.
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Weigh in last night was 178 and dropping. I am losing weight like it is going out of style. I am almost down to pre-stomach surgery weight. And that was 16 years ago. Anyhow, I don’t think I look good at this weight. I don’t look healthy, go figure.
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Legs are still thrashed. Well, knees and ankles are. Walking hurts. My gait is somewhere between a gorilla and an old man. I can’t wait for my electric wheel chair. Then I will buzz around honking at people. I am the ornery. Supposedly everything is in order from Wehbe’s office. Gonna give NuCara Medical Supply a call today to see what is up.
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I am playing Skyrim again. Something to do. I still don’t know if I am having fun with it. I am having moments of fun. So I guess it’s all good.
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That is it for this morning. Its almost 6am, time to try to go back to sleep. You all have a wonderful day.
It’s the weekend and I was up at 5am. No clue as to why and I don’t think I am going back to sleep anytime soon. Oh well. Today and tomorrow are supposed to be the last of the 70+ degree days this November. It’s been a beautiful run. Shouldn’t complain about the weather changing. Anyhow, it’s November 7th, 2020. This year from hell is almost over. Vaccines for Covid are supposedly coming out soon. We just have to wait and see.
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My normal place (MercyOne) infusion center was full up Thursday and Friday, I needed blood like then. So went to a different infusion center (John Stoddard Cancer Center). It was an experience. The place was cluttered. Odds and ends scattered every so often. But I can not and will not say anything bad about the service. It was just an older building. And it was kind of kreepy. But if ever MercyOne can’t get me in for any reason, I will go back to John Stoddard.
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Mom arrives tomorrow and is staying till Saturday. A whole week with my mom. YAY. Teresa plans to cook Thanksgiving while mom is here. T also plans on making her cheeseburger chowder. Beyond that, I am not sure if T is cooking anything else or we are doing take out. It’s all good. T works all day, so its totally up to her.
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Jason and I talked about his Eberron Dungeons and Dragons campaign. We are shooting to finish that campaign on November 20th, a Friday night. I just hope to finally kill the BBEG. And finally close that chapter of my D&D career.
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Again, after getting blood I felt like crap. I should feel invigorated or at least better, but NO, I feel ran down just as much as I did before the infusion. I swear this is confusing.
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Chemo starts again next Thursday. Then it’s 7 days of 2 shots to the gut. Yeah, I am not a big fan of this chemo regimen. So far its doing nothing for me. Compared to the last chemo, I still need blood and platelets from an external source. So I can’t tell if it’s working or not. The other chemo we know doesn’t work anymore. This sucks. The old chemo worked so well while it worked. The new chemo just means pain in the stomach as far as I can tell. Then there is the whole constipation issue with the new chemo. At least Teresa is on the ball, she is gonna stop the constipation by sheer will it would seem. She has everything from light stool softener to major laxative. Everything short of GoLyghtly.
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Well, it seems things are in the works for my electric wheelchair. I just hope all the paperwork and physical therapy gets done by December 31st. Cuz if it don’t get done by then, we will have to pay for it out ourselves. Not that we can’t afford it, it is a matter of principle.
It’s a beautiful day here today in Central Iowa, it’s 68 degrees right now and supposed to get to 75 degrees. The sun is shining. Just a wonderful day to lay around and do much of nothing. Somehow I managed to get two days off of the medical things, today being the 2nd of those days. It has felt good to not be poked or prodded for 2 days.
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Last Monday I had to get platelets in a hurry. I was down to 4. Pretty dangerous area to be in. It took the nurses 5 tries to get an IV in. Heh, not my record, but still 5 is a bit excessive. Anyhow, I got 2 bags of platelets so I should be good for a week or so. Now we worry about my Hemoglobin, it should be low enough for infusion tomorrow or Monday. This is what my life has come to, waiting for my platelets or hemoglobin to drop low enough to infuse; not much of a life.
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Also on Monday, in the evening, I had an MRI of my lower back. Looking for markers of my 3rd cancer. These markers appear sometimes and mess with your mobility. Supposedly, “a quick shot of radiation” will take care of them and give me back some mobility, if I have these markers.
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Tomorrow is my normal Thursday blood tests. Like I said, my hemoglobin is probably low. But that is nothing. I go to the infusion center at the hospital and spend a couple hours getting blood. More interesting is I should get my prescription for the motorized wheelchair from Jocelyn (one of Wehbe’s nurses). She has been tasked with getting me the wheelchair. I haven’t seen her since Dr Wehbe tasked her with it, tomorrow will be my first opportunity to talk with her. We’ll get this going. I am running out of this year. Has to be done before the new year.
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Also, I am applying for disability placards, quantity 2. I can’t walk very far. I am physically and mentally disabled now. It sucks. But it is my reality. I lived with the mental disability for all my life, but this physical disability has hit me hard. Not being able to get around like I used to is annoying. My legs hurt all time.
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My mom comes to visit on the 8th and is staying till the 14th. A Sunday to a Saturday. This will be the longest visit she has spent with us (I think). But it’s all good. The weather is going to turn to crap while she is here, but it is November and the weather isn’t supposed to be in 70s. She is bringing her heavy coat. I’m just happy she is coming to visit. We are gonna celebrate Thanksgiving early. We will have a grand time. I have chemo the Thursday and Friday she is here, luckily it is just a pair of shots. So it won’t take long. I just want to see my mom.
Joyous Samhain and Happy Halloween and Happy Nevada Day. It’s the 31st of October (in case you forgot) and it was a beautiful day here in Central Iowa. The temp got into the 60s, the sun was shining, just a pleasant day to be alive.
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Mom is coming to visit November 8th thru 14th. Longest visit that she has ever had here. I am so looking forward to this visit. It’s gonna be great. I miss my mom every day and she can travel easier than we can (blood tests twice a week plus infusions and chemo makes it hard to go anywhere), so when we got a “Free” week, we let her know. Free meaning only blood tests and infusions if necessary. I am so happy that she is coming to visit. I just wish Jim could come too, but he has to work. Understandable.
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I have mostly recovered from my fall, I am able to get around fairly well on my own for at least part of the day. Teresa is being great during the rest of the day when I am wiped out. My lip looks a lot better, the bruise on my right shoulder spread out but doesn’t hurt really, my right knee I really messed up, it’s gonna take a while longer for it to heal. Thank the gods for pain pills cuz if I didn’t have them I would be in a lot of pain (knee).
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We cancelled the palliative care appointment at Mayo on the 11th. Dr. Wehbe is taking care of me as much as he can. Didn’t want to drive 8 hours for an appointment we didn’t need or want. I appreciate the thought, but its too far for idle chit chat.
Teresa is gonna call Teresa (@Mayo) and talk to her about the other appointments we have. It’s not that I don’t want to be treated by Dr. Alkhateeb anymore, it’s the it’s still 8 hours in the car and I can think of 8 hours of stuff I would rather be doing. (Naval lint comes to mind).
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Teresa wants me to go to the ER for platelets tomorrow. I figure I will be ok until Monday. As long as I don’t do anything stupid, I should be fine. Platelets go in lightning fast, so its not even gonna be a long day (like it is with 2 units of blood). So platelets wait for Monday. I googled what happens when you run out of platelets, it said you can bleed to death. I am not bleeding anywhere (except this bloody nose) so I am not worried.
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Teresa is playing Horizon again. She appears to be having fun. That’s great to see cuz she doesn’t have enough fun things in her life, in my opinion. She takes great care of me, but that doesn’t sound like fun to me. Sounds like more work. So, she is occupying the big tv in the bedroom, which is cool, since we got it to play games on.
I am playing Skyrim again. The vote is out to if I am having fun or not. Seriously, I am playing and I have no idea if I am enjoying myself or not. Moments of fun are being had, so I guess it’s all good. Better than sitting around doing nothing. So there is that. I am having more fun playing Skyrim than I was having sitting around doing nothing.
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Teresa made this Cheeseburger Chowder from a recipe found on the net. Without changing anything in the recipe she just might have made the best soup that she ever has. First run was fantastic, and leftovers are plentiful and well worth having. I would say, leftovers are to die for but that might be hitting too close to home right now.
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Dr. Wehbe pushed the electric wheelchair off on Jocelyn. That is fine, the prescription just has to come from a doctor’s office. Jocelyn is one of his head nurses, she’ll take care of me. I will have an electric wheelchair before the end of the year.
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I hope to finish Jason’s Eberron Dungeons and Dragons game soon too. We are on the last mission, getting ready to fight the BBEG. Can’t leave it there. Would just be wrong. So, I’m not feeling D&D tonight, maybe next Saturday night, should have platelets and blood by then. Should feel pretty good. I’ll talk with Jason about it.
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There is something else I wanted to share but my mind won’t let me think of it right now. I guess it can wait.
