I started purging this week. Got through shoes, coats, and sweaters. But the most important news has to do with my visit to the clinic on Thursday. Leah said she could come with and I am sooo glad she did. I don't know if she would have been able to believe me getting the information second hand. Let's just say I am glad many times over that I have decided to avoid Dr. Kobrossy.
Okay--had my labwork done, waited for results, and then saw Dr. McCune. We figured that pretty soon they'd want to do a scan and I wanted to try to make McCune my primary oncologist so he could make those decisions instead of Kobrossy.
Well, McCune is part time and the lady I saw last visit is also a part time oncologist. Kobrossy is the only full time oncologist at Essentia. But McCune and the other lady doctor do the same thing that he and Ferrari did...work with each other (opposite hours) to cover a full time position between them. They both work at other hospitals, too.
I explained why I would rather not see Kobrossy if I don't have to. How he got angry with me when I was telling him about the neuropathy. Leah backed me up as to how mad he got. That Kobrossy said it was impossible, etc. I said I understood that it normally wouldn't happen to a chemo patient until they had been on chemo for years, but if I had such a bizarre reaction to chemo why would the neuropathy be impossible, you know? And I do have it--whether he likes it or not. It is slowly improving. I told him the toilet seat story and how my legs will just give out on me and be so weak that I can't get out of a chair...like they aren't there really. Not that it has happened that often but for a while there Leah wheeled me around for my clinic visits because my legs were so weak (and I was so weak from starving to death) that I had to sit down all the time and worried I wouldn't be able to get back up. Dr. McCune said that was neuropathy and it could take up to a year to be better. He was glad to hear I have noticeable improvement already.
It was so nice to have a doctor look me in the eye...and wear his mask.
I also complained that I felt kind of left in the dark with Kobrossy's plans. Like when I got all that information in the mail for the immunotherapy that had forms inside (for financial help) and he'd never told me anything about that coming and never explained it to me when I asked him about it. (Got a don't worry about it--kind of poo-pooed it, you know.)
Anyways, it had been in my records that they wanted a scan done before my next visit. That's what started the Kobrossy conversation--when McCune brought it up like I should have already know about this--LOL! [We only vaguely knew that it would be done at some point...and was one of the things we wanted to ask about. (We made that appointment after my infusion that day--February 10th.]
When Leah asked about how long I'd be on immunotherapy or what the average was for people, as we know everyone is different...and could we schedule appointments ahead of time so we can get Friday afternoons...and did I need to see a doctor every time I had an infusion.......well, I think maybe then he realized how little Kobrossy had ever told us.
I am on one appointment at a time because they are keeping a close eye on me and won't know till I come in and get bloodwork done if I will be getting another treatment. Why? Because people often do really well for a while but can suddenly take a turn for the worst...that could rapidly become life threatening in some cases. The body's immune system that is being jump started to fight the cancer can turn on your physical body and start attacking where it shouldn't. If we find out that my tumors haven't grown that is a win.
Leah and I were both rather in shock and speechless to be honest. Kobrossy made it sound like my chemo reaction was a blessing in disguise (in fact I think he might have used those very words) because he'd wanted me on immunotherapy in the first place before I even started chemo (but had to because of insurance reasons if you recall). He talked like I should have no or very minor side effects and the tumors would likely just shrink away completely because they were small to begin with. My genetic testing made me a superior candidate, too. So, needless to say, we had a completely different picture of immunotherapy.
Kobrossy had them call me to set up labwork but never told me he was going to do that or what it was for. I remember thinking it must be bloodwork I don't need to fast for or a urine sample or both. It seemed weird that the guy who drew my blood had never seen one of these test kits before and had to call someplace to make sure how to enter it into the computer. When I asked him what the test was for he wasn't sure but thought it had something to do with genetics--which totally baffled me. Kobrossay, as usual, had left us totally in the dark.
I already had personality differences with Kobrossy. I told McCune how Kobrossy said (maybe by second visit) he didn't really understand the Midwestern attitudes (stoic/non-reactions or too cheerful...Swedishness?).
Kobrossy mostly talked and looked at Leah--definitely not me. He took his mask off every time when we were alone in the room with him. So when he finally was looking me right in the eye--pulled his chair over in sudden frustration--leaned forward to, quite emphatically with barely disguised anger, tell me in no uncertain terms that I could not have neuropathy--was basically almost shouting in my face...it was without a mask on.
He did apologize--or make an excuse--before he left the room but I knew things would never be the same between us. They weren't ever good to begin with but I had trusted his medical knowledge. Oh, but I also didn't like that he insulted a fellow doctor that day, too, when I tried to tell him what Dr. Regender (GI doctor who is my bladder surgeon's dad) told me when he stopped in while I was in the hospital. Regender told me that he didn't think I needed a scope down my throat because all my nausea and vomiting was caused by the chemo. (Which it was.) Kobrossy interrupted me and said that Regender was wrong and didn't know what he was talking about because he wasn't an oncologist with years of experience with cancer.
Yes, I am sure you can tell I have been quite upset about Kobrossy and how he left us in the dark. I am so glad to have a doctor who listened to me, looked mostly at me, believed me, and told me the truth. I told him I may be an optimist, but I am a realistic optimist. I want to know the truth.
The truth. My long-term plan--the goal is "palliative therapy meant to increase the number of good days that she has". That may be continuing Big I therapy or taking a break from it depending on if I develop limiting side effects. (That's from notes online after my visit.)
Kobrossy's assumption that the tumors would just vanish--that is very much a best case scenario. (Not that it can't happen--I did have excellent genetic results for odds of a positive outcome.)
So...I have been absorbing all this since Thursday. We will know a lot more after I have the CTscan on the 10th. Makes a huge difference to find out if the tumors have grown, shrunk, or remained the same.
I had no pics even this past week. But Leah sent me some...and these are the best spirit lifters in my life. :):)
Apparently the boys made a monster face with tape out of one end of the bunkbeds--LOL! They are always thinking of something unique!
This was before Christmas. The boys had shoveled out their igloo/ice house. No idea if it is buried again but most likely is with several snowstorms since then.
Daddy overseeing some sledding...and looking very Fargonian--LOL!