The good news highlights are that I haven't thrown up since last Tuesday or Wednesday. I can drink and eat more at a time and don't feel like I am hungry all the time (which started as soon as I could keep food down--lol!). I didn't even need a hydration infusion on Friday.
Other than appointment days I was doing nothing. Pajama days. Eating, drinking, peeing, pooping, and sleeping. You truly realize how wonderful it is to be able to eat and drink when you couldn't for five weeks...and to be pooping when you didn't for at least three weeks (nothing TO poop). Things still don't taste quite the same and I can't eat some things I loved (yet) because of the oil or grease content (have to be careful even with my beloved cheese). But by this last Wednesday I was able to drink water--really gulp and not just gingerly sip. So Thursday I made some coffee to see if I could drink my fresh ground, pour over coffee again!! Whoohoo!! YES!!
The simple joys of life. :)
I am so exhausted by all these weeks and weeks of tests and labs and surgeries and appointments...I reached a wall. Been functioning on minus spoons for some time. So this was a good week on that front...because I know I will be getting a break.
Was the day of my cystoscopy procedure. (I couldn't remember the proper name of it but it happens to be on a sheet of paper piled next to me on the table--lol!) I haven't trusted my legs for walking very far so Leah took me in a wheelchair to be on the safe side. Was feeling so numb from the waist to my calves that when they prepped me for the procedure and had me waiting in the weird frog-leg position (which hurt because of the arthritis in my hips and knees and can only spread them so far so they shook and shook) until Dr. Regender arrived I had no clue that I was actually covered with a paper blanket. Thought I was just lying there spread eagle (and a male nurse walked through the room) until the doctor arrived when a nurse told me she was going to uncover me now. That's how numb my legs are.
It was uncomfortable and I could feel everywhere she shifted the camera (that could be because of my fibro as I have had doctors tell me I hurt inside and out)...but it was really quick! Like five minutes or so. Whew!
The wonderful news is that it was basically just what I thought it was--a scar of some kind from the surgery. It was in the same place as where she took off the tumor and was just raised up a bit. She said she would double-check with her partner and even called me later to tell me they both agreed that nothing needs to be done. They will keep an eye on it with scans here and there--but no surgery needed. Wonderful news!
Leah came in afterwards and watered my poor inside plants for me. I am too short to do it without climbing up a stool and with my rubbery weird legs I didn't think I should be doing that (Leah didn't, either). I have been a bad plant mom because they were really wilting. I hope they survive my negligence.
Off to the clinic. Lab work drawn. I had gained back 9 lbs of the 26 I had lost. The place was really busy. Of course we were there earlier in the day than usual because we were seeing Dr. Kobrossy after the lab and before any infusion. I was in a wheelchair. Leah and I waited a long time in the room but we saw they seemed really swamped with patients that morning and were having a good chat.
Dr K came in apologizing for being so late. Things went downhill fast. Let's just say that when I started to tell him about the neuropathy in my legs and how I had been ignoring it for over a month...he basically told me it was impossible that I got that because of the chemotherapy. People who get neuropathy from chemotherapy have been in chemo for a long, long time--sometimes years. The conversation (or mostly lectures from him) jumped about.
He took off his mask and got up close and personal--leaning in--eyeball to eyeball. Usually he spends half his time talking to Leah (because he thinks she understands so much better than I do) but he barely glanced at her. It was like he was going to force me to understand...something?...but he couldn't get through to me.
At one point he told me he really cared about me. Told me it was okay to break down once in a while (like he wanted me to cry right there so he could comfort me). I just stared at him. He'd just been talking down to me!
He told me the story (second time I've heard this one) about this woman he'd treated and she hadn't seen him for years--but she saw him from across the street and she threw up. I remember at one point after the vomiting woman story I leaned in and eyeballed him hard and said--so you think this is all in my head?!
I remember I tried to tell him what Dr. Regender (gut doctor) told me in the hospital and he cut me off and said (vehemently) Regender was wrong and he doesn't know because Regender's not an oncologist--unlike him with all his years of experience. We will have to just agree to disagree, I said.
I know this is a jumbled mess even trying to tell the highlights of this strange confrontation...but that is how arguments go, isn't it? I have had some really crappy doctors (male and female) in my lifetime but this was the most aggressive, condescending one yet.
Finally I was done trying to talk with him. Inner wall went up. He'd cut me off when I did try to say anything and none of this made much sense. If he believed I had a rare allergic reaction to chemo that caused certain issues--then why would it be impossible for me to also have neuropathy from it? And where did the neuropathy come from then? Does he really believe any of what has happened to me? Or does he think I'm some bizarre kind of hypochondriac?
I sat back in the wheelchair and wouldn't look at him. He actually "apologized" after a little bit...well, he explained why he snapped at me. Said he'd had a patient pass out and claimed that he'd worried about me waiting for him while they were dealing with that other patient. Sounded lame to me, but it is a rarity for an egotistical specialist to apologize for anything, so I guess he gets credit for that.
Let's just say I was hoping nothing like this would happen. But from day one Dr. Kobrossy had reminded me quite a bit of Dagan's cardiologist, Dr. Katkov, when he was a baby and growing up. They both have this need to be the god-like specialist, if you know what I mean. They are used to being adored and almost fawned over. (Not that I have seen Kobrossy with other patients or family members, to be honest, so I gave him the benefit of the doubt.) But it was something I definitely felt off of him right away.
I fully admit that I am confusing to people. They take my positive attitude and sense of humor as that I am not fully understanding the seriousness of the situation. I am fully and completely aware of the life and deathness of situations. Dr. Kobrossy made a comment toward Leah early on when we first met him about how he doesn't understand the nature of the people from the upper Midwest here. (I forget where he was from--Pakistan?) I knew he didn't really understand or "get" me and I was okay with him mostly talking to Leah. I can't hear out of one ear hardly so that's fine.
I am used to people being a bit baffled by me in various situations over my 70 years. He can think what he wants about me. I am just wanting someone who knows the science and medical options, you know? That's how I felt about Dagan's cardiologist back then, too. Unless they mess with what I know to be true...I can sit back and be polite. But mess with my son and I will fight you. Mess with my health and I will fight you.
I don't think Dr. Kobrossy has probably dealt with many cancer patients who have been in as bad of shape as I was to begin with--for a couple of decades--before ever getting cancer. I fool them that way, too. I don't look as sick and easily incapacitated as I am. Even though I tell them, many health professionals don't believe you. And then I had such an extreme reaction to the chemo. How was I to know what's normal and what isn't? Didn't totally surprise me I might have a rough time of it on chemo after the bad reaction I had to the covid vaccine shots for three months or more. (Thought I was going to end up a long hauler from the vaccine for a while there--lol!)
Anyways, I wasn't sure if I should bother to talk about the personality clash or head butting incident between myself and Dr. Kobrossy or not...but it happened and will be likely important in our future relationship. For some reason my having neuropathy really triggered some button for him and he was quite angry about that. He was obviously having a bad day. He did try to apologize. I will still keep him as my oncologist. I will just be quieter and less talkative and a bit more distant. (I know this from my years with Dr. Katkov with Dagan.) There are so many other people you deal with all the time who are so nice and sometimes even really do understand you better (because they see you more often and for longer or they just have more people smarts--lol!). I do think he knows what he is familiar with. And now when I start immunotherapy I will only see him every three weeks--tops. Hopefully less--lol!
On Friday I didn't need to have an infusion. We set up my first immunotherapy session for this coming Friday and Kobrossy gave me the option of seeing him or not that day--I chose not. So I won't see him for a month. It's much easier for us to not see him because he wants morning appointments and when we don't see him we can come in the afternoon. Dagan works half days on Fridays so that works out perfectly. Not so perfect to include Kobrossy in the mix. But he's watching my red blood cell count because it has gradually been going down. (Which I read can also be caused by chemo and not necessarily bleeding somewhere in the body...but it could be that, of course.)
Kobrossy doesn't like me looking things up online--at all. Too bad. (Katkov didn't want me going to the medical library to look things up, either, back long before the internet--lol!) I always want to know as much as I can. Part of my worse case scenario routine so I can put it on the back burner, so to speak. And so I am not surprised--lol!
I was always asking the nurses in the neo-natal unit questions. They got used to me and my strange ways--lol! In fact they would leave me in charge--sitting between Dagan's table and the premie in the next warming bed for short periods of time. If little Janie's alarm went off I had to slap her legs lightly to get her heart to start up again. They trusted me. They also knew that when I raised my hand up high and waved to them that they needed to come over to take over with Dagan because I was having a rare moment where I needed to go to the nearby bathroom and pull myself together. I didn't allow anyone to be falling apart when we were with Dagan--not even me. Babies sense so much around them. One of the nurses even gave me an old stethoscope before I took Dagan home and showed me how to use it. Katkov would have had a fit--ROFL!
So anyways-- a month away from Kobrossy will be good for both of us. I knew I have aggravated other doctors over the years and they might have felt as angry as Kobrossy but none of them showed it so much...and for so long--lol! Leaning in eyeball to eyeball trying to make me almost be something I am not.
Once in an appointment with Dr. Katkov when he was talking about doing a heart cath to see how Dagan's heart had changed over almost three years...said that it had to be better or he wouldn't be doing so amazingly well. I said that would be nice, if life was fair...but I was just glad he was doing so much better than anyone expected regardless. Katkov got visibly angry with me--shouting that his heart HAD to be better and maybe they could even build a wall between the bottom chambers. (It was worse and they couldn't.)
Another time I made the remark of how grateful I was for both medicine and faith that had kept Dagan going for years (I think he was about five at the time) and Katkov slammed his fist down on the table and said "it was the surgery that saved his life!" Really startled me...but I just raised my eyebrows and observed him. I can create festering anger sometimes in people.
Yes, doctors can be an interesting lot. Maybe I can set some of them off because they are used to people fitting into certain boxes. Physically. Emotionally. In most ways--I'm not what they expect, you know?
You'd likely never know it when you first meet me (depending on where we meet--lol!)--but I guess I kind of live outside the box. Always have. I am not "normal"--ROFL!
Well--in the meantime--I am just plain recovering. Barely functional--just on R&R. Feels great. I can eat and drink, anyways. Ahhh! Brain is feeling a bit less foggy. (But as you can tell with the blog jumping all around--still not exactly clear headed--lol!) Appreciating the days free of appointments. Sleeping whenever around the clock. About ready to be able to write some letters again pretty soon. In fact--time to start on Christmas cards!
No appointments until Friday afternoon. And the immunotherapy is a shorter infusion--like 30 minutes!! Whoohoo!! Can you tell how exhausted I have been? Not even any pictures his week. I expect this next week will be better. :)
I am glad you all accept me for the abnormal person I am. ;) Till next week. Bless you!!