Took longer on this update than any before Sorry

January 13, 2021 seems like a decent day. The sun is out, its 40some degrees, what more can I ask for during winter in Iowa?

My mood continues to flip and flop, knowing your days are limited causes this (as does a lot of things that aren’t relevant to me at this time). Impending death causes rapid bipolar, imagine that.

Mom will be here Saturday. YAY. She is staying for 2 weeks. YAY. Everything appears to be ready for her visit. YAY YAY YAY for having a super wife who likes to get things done.

I am up to 8 spots of pain now. Started with 2 knees, added 2 ankles, blew thru my hips, and had settled firmly in my shoulders, Ranging is pain from shoulders of 2, to knees regularly 6 or 7. The pain is what really sucks… I mean c’mon you already told me I am going to die, do I really have to suffer too?

Teresa bought our dogs a new dog bed and it seems that neither dog is really interested in it. It’s soft, it’s cushy, it’s a great dog bed and they seem ambivalent to it. Oh well, nice try.

Teresa also bought me a vibrating/heated prop up in bed pillow thing. I believe it is arriving tomorrow. Looking forward to having a big new gadget to play with.

On with the update, after Monday’s 2 blood and 2 platelet transfusions, my hemoglobin was 9.5 and my platelets were 61. The highest they have been in a long time, and for kicks and giggles here my white blood count is at 3. The crowd has my permission to go crazy over those numbers. Too bad they won’t last.

My breathing problems are getting worse. OH, you are asking now “what breathing problems”? Well, I am not getting enough oxygen while I sleep. I could go back on my CPAP (NO way in Hell) or I can just let Teresa worry more about my (Don’t want that, but its inevitable). Last night was really bad, the night before wasn’t. Go figure.

But anyhow, here is the gospel according to Hectic… I made it thru December and January. I honestly feel like I can make it 3 more months. I feel pretty good whilst feeling rotten. If by chance something does happen and I do pass on unexpectedly, Teresa has instruction of what goes where. So she has names, addresses, and phone numbers of everyone who is to get anything. So, I am good there.

At this point, I am still blubbering when I try to talk about things over the phone. I finally got ahold of Tom and I lost control. Just cried and cried and cried. I am just better in person, so if you want to visit, just say the words and we can make a home visit a thing (more than likely).

That brings me to the end of thing blog. Sorry for the long delay since the last one. I will try to be better I promise.

A brief glance back and a brief glamce forward

Today was January 7th, 2021. I have no clue about the weather except it was some degree of cold and I chose not to hobble out into the cold.. Anyhow things have been happening and I haven’t blogged about them…. I am such a slacker.

OK, gonna do this somewhat backwards chronologically starting with today and then things getting confuse in my head and just spilling out in any order.

This afternoon, we met with an admission person (forgot her name, sorry) from the weirdest hospice place. To paraphrase her, “we just try to make your end of life and comfortable as possible.” Including but not limiting to, infusions, meds. massage, and a lot of other stuff. All at a reasonable price. 5 days of CNA and 2 days of home nurse. Yeah, a guy could get used to this life, too bad you have to be dying to get said life.

This morning we had a home nurse visit. Might very well be the last nurse visit by Shanon if the home health agency gets the show on the road and get us signed up and assigned a permanent home nurse. We really like Shanon, so she is gonna be a hard act for any home nurse to follow.

We were supposed to meet with three people from the hospice on Tuesday but ended up having to cancel due to having to get platelets. Blood was the Friday before that (I think).

Speaking of hemoglobin (blood), I am currently at 7.4, we are taking a chance not getting a blood infusion tomorrow and waiting till Monday. Brave or stupid, you make the call.

Yesterday I watched more political crap and right wing violence to last somewhat of a lifetime. All Trump had to do was show up where the violence was happening and tell his supporters to pack up and go home. That would have been the manly thing to do and would have stopped a lot of damage and a lot of loss of America n Pride.

At least Trump had promised a peaceful transfer of power. I will truly believe it when I see it.

Teresa bought Star Wars: The Last Jedi. Between World of Warcraft and Jedi she has kept her free time full. She had promised to teach me the Witcher III game, but I guess I fall behind priority in certain areas.

Mom is coming to visit again, this time she is staying for 2 weeks. She will be here from January 16 to January 30th. She has never before stayed anywhere near that long. (longest before was 4 days I think)

Oh, I am still playing Skyrim: Special Edition and a little Civ IV Warlords (very little).I still like Skyrim even though it gets monotonous, Skyrim will probably be my go to game until I die.

So, life has been wheelchairs, walkers, and joint braces. Very slow movement. But hey, I have fell once. Started with my knees, moved to my ankles and has just recently moved to my hips. I can actually feel the hardening occurring (that’s probably in my head).

And finally I have to include a special thank you to Cathy and Chuck Klasek for the ingredients for the Macho Combo Burrito from Del Tac0. We made 5 tacos out of what you sent. It not only finished off my bucket list, it brought back some serious memories from when Teresa and I got together.

Good Night but not good bye

Heh, the only thing Happy about this New Year is I am spending the time with Teresa. Other than that 2020 is over, and 2021 is about to begin. Yay. rah. 2020 was another in a long line of sucky years following other sucky years. And no, I did not die in 2020. 2021 will be the year thanks to Cancer #3.

Now, there is no more chemo to try. There is no miracle cure for Cancer #3. As a matter of fact Cancer #3 is 100% fatal. So you are now reading the blog of a might as well be dead blogger. Lucky you.

I should, however. live long enough for my mom’s visit in January. not sure if Jim is gonna make even part of said trip. Mom plans to stay 2 weeks. Tying my 14 days I spent on vacation when they lived on McCool in Portage.

I really would love to see the mountains where they live now in Colorado. But I am grounded. No going anywhere non-medical for me. And even then, most of my medical stuff is done by Shanon, the home health nurse.

Next medical thing is blood infusion Saturday at 10am. 1 unit just to hold me over the rest of the weekend. 3 hoursish including cross and matching of my whacked out blood. Computer goes along on that trip. Still playing Skyrim: Special Edition.

Tuesdays plan thru me for a loop. Teresa and the home health people are coming to discuss Hospice Even the though of Hospice care sends me for an anxiec loop. I broke into tears trying to tell my mom about it. Oh well, I got til Tuesday at 2pm to get my crap together and not freak out at the word Hospice.

So, 2021 is starting out crappy, why shouldn’t it? The only difference I see between 2020 and 2021 is I won’t survive 2021. Don’t worry about knowing or not, I’ll show Teresa how to do a blog to say my final good bye.

Speaking of good bye… good night. I would say I will try to write more often, but truth is I suck. So just good night with no inferred promises

I’ll live thru Christmas

Since I haven’t posted in a while, I figured it was time. It’s Christmas Eve day, I am alive, and I am doing as well as can be expected circumstances. Thanks to Dr. Wehbe getting me blood and platelets yesterday I stand a good chance of surviving Christmas weekend.

It’s COLD here, as well in the middle of the rest of the country. Not just cold, but single digit cold with -double digit wind chills COLD. Glad I do not have to go out again for a while.

I bought Witcher 3 for PC for Christmas for myself. Looks like a Cool game. Just waiting for a new XBox controller for my laptop. It will be here between The 3rd and 8th of Janary. I got a RED one on the way. Looks great to me.

My mom said she is coming to visit again for two weeks during the middle of January. Gonna be a cold visit, but we just have to get here here in the house, Teresa will take good care of us, she always does.

In the wait time, I am back to playing Skyrim: Special Edition. Heh, I discovered that there is such a thing as too much cheating They make it so easy to cheat and then zap the quest givers and they stop giving out their quests. Most annoying . So, I restarted again I only cheated a little bit and everything works fine again.

Dr. Wehbe ordered me a bag of blood and a pack of platelets yesterday. Last blood stats test didn’t show they were needed. However, welcome to Holiday weekends #1, at the rate I am loosing, I would have been dead by the end of the weekend. So we sat for a little over 2 1/2 hours getting a bag of each. Now I have a fighting chance to make till Tuesday.

Shanon, our Home Health nurse is cool. We gave her a brand new air popper which was worth nothing to us and in return she gave us cookies. We told her many times we didn’t want the air popper so she didnt have to give us anything in return and went ahead and did it.

I am mostly stuck I’m bed now, can hardly walk and not at all without my walker. I deep down wish there was a cure for cancer #3, we had a handle 1 and2. Anyhow, 3 is the killer. Slowly turning my joints crystalline. I wouldn’t wish this on my worst enemy.

I wish you all a Happy 25th and a Great New Year.

So far I am still alive

Well, it is the 19th of December and I am still alive. Looking good for making it to Christmas. Actually looking pretty good for New Years too. It’s cold outside, but it is the end of December, almost officially winter. I do not believe we have any snow predicted in the near future, so I guess it is all good here.

I’ve take it on to call my mom every day. So far I have done a good job at that. Mom and Jim, both of them, need me in their lives. I am truly sorry that this won’t last very long. I am lucky to have made it this far.

Jennifer Williams Young just left our house. She made a trip to Adel, Iowa from Chesterton, Indiana JUST to see me before I die. Tears were held in check until she was leaving. Then the flood gates opened. Yeah, saying goodbye is a very hard thing to do. And saying the BIG good bye is even harder.

I am pretty much down to getting 1 infusion a week. The faster I have to get infusions the closer I am to death. So 1 (blood or plasma) infusion a week isn’t that bad yet. Next week should be blood as last Friday was platelets. I prefer to get platelets cuz they go in super fast, blood takes 2 hours per unit, platelets only take about 35 minutes. Oh well, it will be blood again next week.

Shanon, my home health nurse is really nice. I should have gotten disabled and gotten the PICC Line in a long time ago. But it’s alright. I will only have use of her for a little while. She does the dressing changes and draws blood for tests now, so we don’t have to make trips to Dr. Wehbe’s office except once a month. We can so handle that.

I am having trouble sleeping at night, but no trouble sleeping during the day. Weird. From 10 pm to 6 am it’s a crap shoot if I sleep. Then from 7 am to 9 am I am usually asleep. Then its on and off for a few hours. Then I get up around noon. Between noon and 10 pm, there is usually a nap or two involved. Not how I want to sleep, but its better than when I was not sleeping at all.

No more trips to Mayo

Hey look, its December 15th and I am still alive. (morbid alert) Just 17 more days that I “have” to live (according to my accountant. On January 2nd, Teresa can claim me for this year and next on her taxes. Right now, I am her all important deductible.

Last week, I quit on Mayo Clinic, too many blood and bone cancer docs who said I am fatal with Cancer #3. So, I messaged Dr. Alkhateeb and let him know that I was thru with then. He wrote a very nice message back which thanked me for letting him be part of my care team. Really, it was the first sign of bedside manner from him we had ever seen from him, he wore it nice.

So, Dr. Wehbe is in charge of my palliative care. He is keeping my alive by prescriptions for infusions until I die. Speaking of infusions. I will probably be spending all next Friday getting blood and platetlets. Somehow we worked it out (unintentionally) to where I run out of blood and platelets at the same time, which translates to getting refills at roughly the exact same time. So hopefully, we can get in early cuz its roughly 3 hours for for each bag of blood and and 1 hour per bag of platelets. And 1 hour of bag changes and such. So, we are looking at 9 total hours, I guess we will be splitting this into Friday and Saturday like we did last week.

I want to thank all the friends and family who have reached out to me to wish me well. A couple of thing though. 1. I am not answering my phone for strangers. 2. If you want to see me, contact me on Facebook, we will see what we can do. 3. and finally my blog here will be written on rare occasion due to my depression. Yeah, dying is depressing.

A visit a decision a visit a visit and the future

Mom and Jim came for a short visit (Jim has to work). They were here from Sunday evening to early this morning. This morning being December 10th, 2020. I do wish I could go visit them for Christmas but with my health deteriorating at an alarming rate I am not going anywhere. It was still a nice visit. I just wish my brother has more time off work.

We were supposed to go to Mayo Yesterday (Dec. 9th) but I had an anxiety/asthmas attack the night before going And that got me thinking that another bone marrow biopsy isn’t going to help. Both of my oncologists told me separately that I was going to die. So, we chose not to go to Mayo anymore. Let Dr. Wehbe continue to give me palliative care and live what life I can for the rest of it.

My friend Drew is coming to visit. He is even gonna wear a mask for me, cuz I have Zero immune system. He should be here today around 4. I miss my friends. All my friends. Wish I could go and see some of them, but alas I seem to be going nowhere. But Drew I owe dinner to. So, it’s a good thing he is coming around dinner time.. Don’t know what we are having yet, guess that we will worry about that when we get here.

Today, around 2, Shanon out Home Care nurse will be here. It is time to check my blood levels and have my dressing on my PICC line changed. I like Shanon, she is really emotionally motivated. So, she has cried every time she sees me. I find it odd that the service didn’t tell her that I am terminal. She learned that from me.

Tomorrow will probably be platelets and maybe some more hemoglobin. This living infusion to infusion is annoying. But the less pain alternative kills me sooner). Hospice never really crossed my mind. All I really know about is that they stop all infusions and wait for you to die. No thank you.

I know that I mention tweaking my right knee. Well, I did it again. I really ought to stop doing that. I want to rest in my final days, being is pain is NOT really restful. Well, that is that for today. Peace and Love to all my friends and family.

busy week ahead

It’s Sunday, December 6th and I am a few days closer to death. But no one has said X # of days, so could be this week, could be next, could make it to inauguration day. No one seems to have any answers, so I am just spending a lot of time on Facebook and a lot of time playing Skyrim.

Tomorrow I have a video appointment with my shrink. As of now, he doesn’t know what is happening to me. Should prove for an interesting visit. I am going to ask for a big bump in my anti-depressant. Should be a no brainer.

Mom and Jim are due in from Denver in a couple hours. I am always happy to see my family, but the circumstances suck this time. Gonna be a lot of hugging and crying. Yeah, I wish I wasn’t an emotional wreck. heh. This just sucks.

Wednesday we are heading up to Mayo for one of the last 2 visits. The first visit (The one on Wednesday) is to do blood and then a really painful bone marrow biopsy. All thins considered, we should be home around 5:30pm, Jim isn’t tagging along for that visit. We need someone to receive our new bed and take care of our dogs. Mom is coming along though, if nothing else she can find a place to read. But I think she’ll be able to hang out with Teresa. Either way, I want the 8 hours in the car with my mom. So we are going to make it happen.

Then they are leaving early Thursday morning (only flight they could get going back. Thursday morning is going to hurt. Lots more hugging and lots more crying.

Friday will mark my last trip to Mayo unless there is some kind of miracle in my bone marrow biopsy. Turns out they can get results of a Bone Marrow Biopsy in 2 days, instead of 5 like they have said all along. Anyhow, not expecting a miracle. Not entirely sure why we are even doing these last 2 trips to Mayo. Oh well, off we go.

All of these appointments are based around me getting blood and platelet infusions on time. Hoping nothing gets screwed up. I just want a little more time.

I hate this part

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.

I though I was dying before. Now it’s for real.

December 1st good and bad

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.