Good morning!
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.
****
Meanwhile...
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.
19 comments:
It's distressing enough to have to deal with the illness, you shouldn't have to fight with the doctors. It's pretty sad to see this kind of conduct from so-called medical professionals.
Good update. So glad you have better doctors now. It is good that you are doing your own research. Cute pictures of McFamily. Stay warm in all that cold snow. You remain in my prayers.
You never know what you’re going to get with a specialist or surgeon. Most of the younger ones seem to have good attitudes. Not that I’ve had as many dealings as you, but I fell as though I have been fairly lucky so far.
I would have gotten rid of Kobrossy after the first time he pulled that crap on you. I would have complained to the hospital or to someone to listen until I got the results I wanted, which was to be treated fairly. I hope things are finally looking up in that area. The boys are SO cute and sweet.
I'm so glad you have not had to deal with that Dr. Kobrossy recently and I hope that continues. I've had one or two like him over the years and that was enough! All those pictures of the boys are just wonderful! It looks like they have so much fun with their Dad. I remember playing horsey like that with my boys. The picture of them sleeping is really sweet too. Annie sure looks happy cuddled up in her bed. It's so relaxing to watch cats sleep.
Take care Rita!
Whew. That was a lot of information for you to absorb in that appointment. I am glad that you and Leah were able to express your concerns (and fury) at your treatment by Dr K (for knucklehead--eveb though that appellation is too mild for the arrogant idiot). So much information not shared. Some of us simply want the truth about our medical situations, not platitudes, scoldings or pats on the head like we are simple. At any rate, glad you have a couple of doctors now who are willing to treat you well. Hoping that the scan next week will provide some good news and that the ongoing fusions do not saddle you with any more issues. Love the photos of the kiddos and Annie. Along with your son and Leah, they are definitely the bright lights in your life. So glad you have them.
I'm glad you had backup and a sympathetic ear when you brought up issues about the doctor. There's enough stress when you're dealing with serious health issues without adding a difficult doctor to the mix.
As you know I think Leah is a Godsend to you because doctors can either great or an asshole who doesn't lisen because he knows best..........
It sounds like things are going quite well without that awful doctor pulling the strings. I love the Annie pictures and the sleeping kiddos. I'm so glad that you are safe and warm and hanging in there, Rita. Thanks for the update. :-)
I'm so glad that you're rid of Kobrossy. He sounds like a pompous SOB. It's bad enough that you have to face all these medical issues, without having to deal with him. Anyway, it's so good to hear that things are looking positive. Take care, stay warm and cozy, and keep us updated.
Also, many thanks for your comment on my recent blog post concerning Kitzee. I'm praying that she'll be all right, but sixteen is an advanced age for a cat....I'm not very optimistic.
By the way, I didn't know that Annie was so old. She seems to be doing well with your loving care.
I'm not a fan of doctors in general. I love my PSP but can never get in to see her. For years we chased my auto immune to see which one it was. Five years and nothing. Just taht they h=think it's either Sjogren's or lupus. Does it matter really? There's no cure, just medications, all of which I can do with no diagnosis. It's all about money sadly.
We had our first real storm of the year. Fingers crossed the rest of the winter will be mild.
So happy that you finally have a Dr that listens to you! That is so important. So glad the neuropathy is getting slowly better! One day at a time!! Stay warm the next couple of days sound awful! We have appts both days...but next we we could get a warmer weather break! :)
This was a lot of medical information, Rita, but the venting is helpful too. I have to agree with your assessment and previous comments in saying good riddance to Dr. K. It seems he has no redeeming factors, certainly not a good “bedside” manner. It’s good to read that you were able to share your concerns/issues with the 2 other doctors. Hope the scan results will bring good news…or at least better.
Stay safe and warm with the blizzard forecast.
So glad things are changing with the new doctor. I love the photos of the family. Stay warm and be well.
I'm glad you are happier with the new doctors. I'm very relieved that this doctor also wears a mask. Great to hear your Neuropathy is continuing to improve.
His bad attitude aside, it's possible that Dr Kobrossy was focusing only on the best case scenario to give you hope. Some people would just give up the will to live if told their chances weren't great. Mindset and belief that there will be a positive outcome can be half their battle. At the end of the day, you couldn't remain on Chemo because your body's reaction to it was so adverse so Immunotherapy would have been the next option regardless.
Immunotherapy side effects seem to be things you deal with normally so let's hope it doesn't get worse than that. You haven't had a bad reaction like you did on the Chemo so that's a good thing at least.
Palliative therapy...WOW! I pray that you are the best case scenario. Crossing everything that it will be the case.
Loved all the family pics! Yep, Kya is always more cuddlier during winter. I don't think she's quite as restless a sleeper as Annie. lol
I'm glad you are feeling safe and peaceful. Focus on healing your body. Visualise that cancer shrinking. Mind over matter kinda thing. Stay well, my friend.
Love and hugs,
Serena
Wow, Rita. That's a lot of stuff to process. But I'm glad you talked with someone who heard you, listened and I hope will stick with you for the end. Kobrossy sounds like a real piece of work, better suited for solo work in the lab rather than dealing with human beings who are ill and scared. I can relate to how the symptoms of things you always had before can become confused with what is a change (or not). I had a Covid test partly as a baseline when coughing and sinus issues. It COULD have been Omi. Or it was probably (and WAS) just my normal stuff. How do you know? So you are very wise to have Leah "noticing" too -- because face it. We get so used to ourselves, we don't see the incremental changes turn into big ones. Sending all good prayers and wishes your way for success and health and healing.
So much you are going through now. I think one should be comfortable with one's doctor. Some docs really do not have much "bed-side" manners and these should stay away from patients. The boys are so active and the monster bed is quite creative.
You have had so much to deal with Rita, and this must be taking all your reserves. It is tough luck to have a doctor as bad as Kobrossy and I hope that you can keep away from him in the future. I'm glad that Leah will be keeping an eye on you to see if your symptoms change. The boys are at a wonderful stage in their childhood and their antics are going to keep you amused now - wonderful to see all those pictures!
Oh my gosh, Rita. That is A LOT to take in medically. I can see why you need to process that. That Dr. Kobrossy sounds like he was a horrible doctor and human being. No one should be treated like you were treated. I'm glad you and Leah said something about never wanting to see him again.
Looks like your grandsons were having a lot of fun! They are growing up so fast. Seems like they were babies not that long ago.
Annie does move around quite a bit in a short period of time. :)
Post a Comment