Hectic's Blog About Stuff

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.

____________________

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.

____________________

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.

______________________

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).

________________________

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.

________________________

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.

________________________

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.

________________________

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.

________________________

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.

________________________

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.

_______________________

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.

It’s Sunday, September 13th, 2020, the day appears to be a typical early fall day. Temp in the 79 range, no real humidity, nothing horrible to look forward to in the forecast either. So I mark this as a good day.

________________

Teresa left a message with my shrink last week and he never responded. I find that rather disturbing. Her message was a “Help, my husband is in distress” and he didn’t take it serious enough to respond. He is going to get a word or two about this Thursday afternoon when we have out appointment.

________________

Had a blood test last Thursday, and needed a bit of blood. So Friday was a day spent in the infusion center getting 2 bags of blood. Dr. Wehbe’s idea of a bit of blood I guess. Also, the start of his palliative care. Which means he will give me blood and or platelets as needed while I am under his watch. I couldn’t ask for a better guy to take care of me like that.

_________________

I go back in for a blood test next Thursday, but shouldn’t need blood or platelets. I haven’t needed platelets yet this time. And with getting 2 units of blood last Friday, I should be good to go.

_________________

I want to go to Colorado before Jim and mom leave. Maybe even before we are summoned to Mayo. With the exception of the snow storm which hit them last Tuesday, weather there is somewhat nice. I really want to get to spend some of the time I do have left with my mom and brother. Plus it’d give me the chance to finish my bucket list…. MACHO COMBO BURRITO from Des Taco.

_________________

Right now I am in limbo. I think that Dr. Alkhateeb is going to run another bone marrow biopsy along with litany of other tests. I don’t blame him for wanting to run another biopsy cuz the last doc (at Mercy) had all sorts of problems, so a second one might be in order. Theresa (Dr. Alkhateeb’s nurse) suggested we plan to spend a couple days there this visit. FUN FUN NOT.

_________________

I wish I had some energy though. Or that my mind could focus. I think I am going crazy(er) cuz I can’t seem to do anything. My mind and my energy levels control how well I am doing, and right now, crappy is the word.

________________

It was cold and wet all day today. 56 degree high and a lot of rain. Made a miserable day even a little more miserable.

__________________

Today I found out what has truly happened to my bone marrow… it’ empty. I guess the silver lining is that all those tests came back good, so I am a perfectly healthy shell now.

__________________

Dr. Wehbe officially bower out of anything more than palliative care, cuz my problems are way out of his training. So, all he is going to do is give me blood and platelets when I need them. Otherwise, he will try to answer questions but can’t promise anything. I respect this man and if says he can’t do anything for a patient, I know it hurts him on the inside.

___________________

Dr. Alkhateeb is excused from actively treating me cuz he has rounds duty at the hospital. Best he can do is take care of the ones who are going to survive,

___________________

To sum this up. I am actively dying now. Dr. Wehbe will do what he can to keep me comfortable here. Dr. Alkhateeb isn’t available until after September 28th. And until someone can do something for me, I am just going to keep feeling miserable.

___________________

I did manage to get over to the Waukee Iowa DMV and get my new driver’s license. Small miracles do happen.

___________________

I wish I had energy to do anything, but according to Dr. Wehbe, I have a thick goo where my bone marrow should be. And it burns a lot of energy to just make it day by day.

___________________

Tomorrow I get 2 units of blood. Last 2 units didn’t make me feel better after a few hours. Here is to hoping these units hit me better and I feel better like I a supposed to.

___________________

Still don’t have an estimate on how much longer I have to live. All I do know is I went from passively dying to actively dying in less than a month. THAT SUCKS.

___________________

It is Tuesday, September 8, 2020 and feels like sometime late November early December. it be cold. 51 degrees was the high today. Far cry from the 96 we had two days ago. Weird weather is what we are having and I am not enjoying it at all.

__________________

Jim and mom just came for a very short visit, but it was so nice to see them. Even if it only worked out for seeing them for a day. Now, I am hoping they can get home. Denver got 14 inches of snow and last I talked to mom she was hoping to catch her Chicago connecting flight right about now. I hope if the flights get cancelled all together, they leave them in Des Moines so they can stay here. But I have the eerie feeling they are gonna fly them into Chicago.

__________________

I feel rotten, still, perpetually. But I did finally hear from Mayo. Dr. Alkhateeb doesn’t want to do anything for my failed graft until Thanksgiving time. I now have appointments on Wednesday, November 25th. If I am still alive then. Seriously, it is like he doesn’t want to deal with my failed graft so he isn’t going to. Or so it would appear to me

__________________

At least I still have Dr. Wehbe actively on my side. He is supposed to have most of the results from all the blood work and maybe just maybe have the further results of my bone marrow biopsy all for me this Thursday. I am hoping he does, I know he wants to be the one who shares, the doc who cares.

__________________

I got an appointment with a pain doc for my knees. I’m to the point where I don’t just get up like an old man. I groan like an old man. I feel like a an old man. Pain doc’s receptionist was offended by the quote from the Ortho guys who told me “welcome to getting old”.

_________________

It’s September 3rd, 2020 and then high today is 79, but this Saturday, Sunday and Monday will make up for this nice Thursday, they are all supposed to feel like over 90. The weather is just whacky right now cuz that Tuesday after it feeling like 90 its supposed to have a high 0f 59. Go figure.

____________________

I went to my lab appointment at 7:40am only to find out that I was removed from the schedule for today. Someone made a mistake. Anyhow, had to wait 20 minutes for Kristel to arrive and write orders. Then I had my blood drawn, and my hemoglobin was down (no surprise there) and my platelets are up (surprising me, not Teresa). Oh well, that just means blood next week and no platelets.

_____________________

I then verified my 8:00 labs next week, and my 8:20 appointment with Dr. Wehbe. Those were in the system. So, those should go off without a hitch. Dr. Wehbe will write the blood for me (well, one of his nurses will). I wonder if it will be 1 or 2 bags.

_____________________

Sometime in the near future we will be making the dreaded trip to Mayo. Dr. Alkhateeb is on travel this week, so he will want next week. But that is when my mom and brother are going to be here. Mom and brother visit takes precedence over a trip to Mayo.

_____________________

Mom and Jim fly in Sunday evening and fly out Tuesday evening. Again, not a long visit, but it will be good to see them, it has been too long.

_____________________

Still not up to reading, still not up to Dungeons and Dragons, still not up to much of anything. I’m trying not to nap as much as I have been, cuz its messing up my night sleep. Night sleep is very important.

_____________________

I’m getting referred to a pain clinic, one affiliated with MercyOne. I don’t have to go back to the doctor I don’t really like. I just need pain meds stronger than what I have. Lortab are pansy pills. I don’t want to get stoned, I just don’t want to be in a lot of knee pain. I’m sure Dr. Wehbe would write me a stronger med, but it’s not his job so I will wait to get in to a pain specialist.

______________________

And with a cool temperature and a quasi-fond farewell to August, it being late August 31st, 2020. Highlights of the month included a Derecho (that I am sure the weather guys had to google what it was called) and some of the hottest and muggiest days of the year. It also supplied us with a lot of under-average temp days with little to no humidity… all combined a quasi-fond farewell.

____________________

Finally after years of begging, Teresa finally made me a fresh peach pie with a thanks to her sister Amy for the recipe. Well, I got to say it wasn’t a pretty pie, it sure was a tasty pie. And the best part is Teresa has improvements in mind for a second pie and had all the stuff needed to make an improved 2nd pie. I am a Happy Hectic.

____________________

Mom and Jim are coming to visit next Sunday thru Wednesday. They have decided not to drive (9 hours each way is insane), they are going to fly in and rent a car. It will be so good to actually see them for more than a few moments. I miss my family.

____________________

Still no results on the app for any of those weird blood tests. So the wait continues. The good news is that I shouldn’t need blood this week. But I still have to go in for labs every week until this is resolved. Next week, I will need blood and hopefully next week Thursday the results from all those whacky tests should be in. But eventually, once these results are in, we will be making a trip up to Mayo Clinic, just to chat (BLEH). Nothing seems to happen at Mayo without a chat visit before hand.

_____________________

Because my email was down. And because Dr. Eastin didn’t text me, I missed my appointment with Dr. Eastin this Thursday which sucks. But what sucks more is they charged me 90 bucks for the missed appointment. Bah, if they would just open their office again, these technical problems will go away. Then they would have to deal with people not wanting to wear masks, which might be worse for them, but it wouldnt cost me 90 bucks.

_____________________

I am still feeling really bad. Still get confused easily. Still totally ran down. All of which can be symptoms of hemoglobin going down. But a month+ of feeling like crap sucks. I just want Dr. Alkhateeb and Dr. Wehbe to figure out what to do for me. If it is B12 or some other vitamin, then give me the pills. If it is not that and something more serious, my donor said he’d still do a bone marrow donation, time to see if he is up for that. And if he wusses out and doesn’t want to do that donation either, then I think it’s time to find a new donor if that is possible. Just sitting around is driving my bonkers. And going crazy while you are feeling rotten to begin with, really sucks.

_____________________

Firstly, the weather has turned, it is now low 80 high 70s with like no humidity. So, on this August 30th, 2020. I welcome the cooler weather and the possible rain contained in. I know the weather guy said the heat isn’t over, but for the last couple days and for the next 8 I think we average 81. The heat can just stay away and let fall come.

_____________________

Secondly, I know I haven’t posted in a few days and that tends to get some people worrying. I’m obviously not dead. I am still feeling like total crap, something is still very wrong with me and no medical person has a clue as to what.

_____________________

I am back on weekly lab work. Somehow we agreed to 7:40am for this coming Thursday. Oh well, its all good, I am awake then and it gets it done and out of the way. I shouldn’t need blood or platelets this week. But I said that before and ended up getting 2 units. Heh. But really I shouldn’t, which I am fine with.

_____________________

I’m too out of it mentally to enjoy reading now. And that goes for playing Dungeons and Dragons too. I only wrote this blog to let those that want to know that I am pretty much ok. I’ve been napping a lot. Enough for Teresa to narc me out to Dr. Wehbe’s nurse last visit.

_____________________

Oh, found out the magic temp that is supposed to send me to the ER: 100.3 or above. I thought it was 100.1 and Teresa thought it was 101.0 Dr. Wehbe settled it. But since I am only running fevers during the middle of the night, when I am asleep, it doesn’t really matter much. Only 1 night was I up to check my fever at the start of an episode and my temp was 100.0 even. So we wouldn’t have went anyway.

_____________________

Sorry for the short blog entry, nothing is going on except waiting. According to the Mayo website, a graph failure can be fatal. This waiting has me quite disturbed mentally. But you can’t rush blood tests, they take as long as they take. So, I take my Xanax and try to sleep every night without remembering my dreams.

_____________________

Peace. Love and Gummi Bears. If anything happens, I will happily share it here, but nothing is happening.

I think its day 6 of being ridiculously hot and muggy. Today, August 27, 2020 feels like a carbon copy of yesterday. So glad I did my going out early this morning cuz if I went out now I would melt.

__________________

This morning was a trip to the lab and a visit with Dr. Wehbe. Lab results were as to be expected, nothing shocking there. I did not need blood cuz Dr. Wehbe gave me 2 units of blood last Friday. He did comment on the number of weird blood tests Dr. Alkhateeb requested. So they had to take like 12 vials of blood today for all those weird tests. Anyhow, Dr. Wehbe also made the comment that I have all the symptoms of a major infection, except I am not running a fever. He had no clue as to why I have been feeling like crap otherwise.

__________________

Was supposed to have an appointment with my Shrink, Dr. Eastin, but technology befouled us and it didnt happen. So now my appointment is September 17th at 2pm. We’ll see if the technology gods all it to happen. Sucks that I didn’t get to talk to him today though, I am in need of his services and waiting a few weeks is just gonna suck.

__________________

Dr. Wehbe said he would write a prescription for pain pills for my knees. The pain pills I got barely touch the pain and the extended release Tylenol isn’t quite cutting it. I asked him for something that won’t make me too stoned feeling. I hate that feeling. Dr. Wehbe will find something that works, he’s good for that kind of thing.

__________________

My knees are getting worse and worse. 2 weeks ago, I rated them 6 and 3 on the pain scale. Today I rated them 7 and 4. With my right knee hurting more than my left. If it is just calcium built up under my knee caps, this HURTS ALOT.

__________________

Dr. Wehbe observed that I get up like an old man. I told him not to look at how I walked. I feel like an old man hurting like this. I really go hope Dr. Wehbe gets my email and gets me meds asap.

__________________

Yeah, this blog turned into a whinefest about my knees. Sorry about that folks.

__________________

So, my graft has failed, but it might be ressurectable from what I am understanding, thus all the weird tests Dr. Alkhateeb had Dr. Wehbe order. I would be so happy not to have to have another transplant. I would be so happy to fix this with some pills. So, we are waiting for these tests that are going to take a while. Waiting to see if we can ressurect my failed graft.

__________________

In the mean time, No Chemo (Woot). Also in the mean time blood and platelet infusions. Both sets of nurses (the chemo nurses and the infusion nurses) are way cool. But I much prefer hanging out with the infusion nurses. I went from 2 hours for 3 days every 4 weeks, to 4 hours for 1 day every 2-3 weeks. Oh well, it’s all good.

___________________

Wednesday, August 26, 2020, is not quite as hot as the few days prior to it. It’s only 95 on the thermometer (feels like 98), but I am still glad I don’t have to go out this afternoon. That is right, I have today off. I’m tired of medical stuff, I needed a break in the middle.

____________________

Dr. Alkhateeb (from Mayo for anyone who doesn’t know) wrote to us. He is of the test and see plan. He wants to check my B12 levels, cuz my GI track is “wonky”. He wants to wait for a chromosomal study. And he is going to be out of town next week. So Dr. Wehbe (the local hematologist/oncologist) will have to do the ground work and of course, keep me alive. In other words, my graft may not have failed as other lesser things might cause the same reaction. So we are gonna play detective. I am cool with that. I think Dr. Alkhateeb just doesn’t want to think of the graft failing on its own.

____________________

The great news is that it is definitely not Leukemia.

____________________

We are holding off on the chemo. WOOT. At least until with have the cause figured out. So for a while I won’t have to go and waist 2 hrs of 3 day every 4 weeks for chemo. This makes me happy too. It’s just a temporary happiness cuz I will be back on chemo in a few months I am sure.

____________________

I still feel like crap though, it’s been this way since about 4 hours after the blood infusions last Friday. Just a general feeling of not well. I got a CBC yesterday from Adel MercyOne and all my numbers are right where they are supposed to be at this time. So, it’s not that. I sort of ache all over. And I am super fatigued. It’s probably all psychosomatic, ya know, in my head.

____________________

Speaking of in my head, I have a video appointment with Dr. Eastin tomorrow afternoon, assuming he doesn’t cancel again. I still got a lot to dump on him. Should be fun.

____________________

In the early morning I have labs and an appointment with Dr. Wehbe. Which should also be fun. He will tell us the final results of the bone marrow biopsy. And he should have the lab run some funky tests on me. I won’t be getting blood this week (I don’t think) and my platelets are off doing weird things, so I don’t think I’ll need those either. It’s all good, I like visiting with Dr. Wehbe, he’s a real nice guy.

___________________