A New Year!
It will be a year of changes. Positive changes.
This week before New Year's was a week of big decisions...and ordinary days. Partridges, sparrows, juncos...
...arctic hares...
...Miss Allie relaxing...
...and sleeping...
...more partridges...
...and diarrhea all day Monday so I wasn't sure about Keanna coming to clean on Tuesday. But decided to not eat Monday and Tuesday until she left...and it worked. If I had a sudden bout she could have gone home, but I made it okay. It is one thing to have someone here in your own home for an hour and fifteen minutes--but a whole 'nother thing to be leaving to go away for a few hours to the clinic.
Leah and Liam dropped off groceries...and that night I started researching online everything I could find on immunotherapy. The past few weeks have been exhausting. My mouth has been so dry sometimes I can't swallow. I thought it was from all the mouth breathing due to the plugged up sinuses.
I continued to learn things online most of the day on Wednesday. Immunotherapy can cause inflammation (which explains my sinuses, joints swelling up, and the diarrhea). I even read that they didn't always count data from people who already had autoimmune diseases because they are already suffering from many of the side-effects you can get from immunotherapy. (No wonder the treatment has magnified all my original health issues--duh!)
Immunotherapy can cause colitis and diarrhea (some cases of permanent damage). I've had this thick slimy mucous with a super dry mouth that's been much worse over these last couple weeks...to the point it is hard to swallow and I have to have water nearby all the time. Searched dry mouth & immunotherapy and immediately it showed me all about mucositis and immunotherapy. I have it all--lips dry and cracking, red shiny gums, bleeding gums, dry mouth, very thick mucous and trouble swallowing...which is totally related to the inflammation of my entire gut system/diarrhea. All the places I found information on mucositis suggested that steroids were what they usually used to try to turn it around and getting off of the immunotherapy to let your body recover.
Steroids and I do not get along well. THEY cause me diarrhea--lol! Or have in the past. And I am just now seeing a slow return to the paste-y poop the last couple weeks. (Who knew I'd be so happy to see that again--lol!)
Immunotherapy can have many side effects--like the stuffed head, sleep issues, diarrhea, this mouth thing, painful joints, flu-like feeling, low temps, and fatigue. Other than the low temps (although I might have had low ones because I never checked), I had told them about it all--the strange paste-poop, bleeding gums, whole mouth hurting, exhaustion, aching all over, joints swelling & painful, insomnia...and I have actually missed three infusion appointments due to diarrhea I've had since mid November. No doctor ever called to check on me. They never seemed concerned over all these symptoms or the fact I have not been able to get in for my infusions due to chronic diarrhea. Maybe just assumed it was because of preexisting health issues? I don't know. Maybe they figured because the tumors have been shrinking and nothing that was happening to me sounded life threatening...well, maybe they are overworked because of such a small staff or just don't actually know or possibly don't care because I have been a patient with weird issues in the first place? Who knows?
Wednesday I made the decision that I wasn't going back on Friday...want to be off of Keytruda until I am feeling better...and would like to get the scan before another infusion because I might not want to be on Keytruda anymore at all.
Thursday I cancelled online again. The reason I gave for cancelling was: "Diarrhea better but still totally unpredictable." The scheduling girl called me..to re-schedule, again, of course. I told her no. I have my regular doctor annual visit on Jan 6th and don't know if I will make that even. I need a scan and can't schedule that, either. I feel lucky I can recently make it down the hall to the bathroom. The girl was a bit testy--told me Brittani was going on maternity leave so that would leave just Kobrossy and this other part-time lady oncologist I have seen before. (In other words they were going to be really booked up--and I knew I was going to be stuck seeing Kobrossy again in the future.) I said I still didn't want to reschedule. She said--"Okay, I'll leave them a note that you will call then when you feel better."
I haven't heard anything back.
Later Thursday afternoon McFamily came over for a quick opening of my Christmas presents for the boys...and Ian had made me this tic tac toe game. :)
I told Dagan and Leah what I had learned online and that I was done with Keytruda for now and also what had happened when I cancelled online for Friday.
Well, we talked...and another decision was made. I am going to transfer over from Essentia to Sanford. From the two oncologists at Essentia to the 44 oncologists at Sanford. Maybe I can find a doctor who actually knows a lot more about immunotherapy...Keytruda...side-effects? Maybe I can find one who listens? Maybe a specialist in immunotherapy...bladder/liver cancer...people with autoimmune diseases on immunotherapy...people who had severe reactions to chemo...??? I am way too shot and foggy-brained to deal with finding out about how to switch providers/doctors mid-treatment. Leah volunteered to start making phone calls this week. Bless her! Bless her! Bless her!
But for right now--I am just needing to rest and get well. I am gradually getting better finally the past couple weeks...but small steps. I just want to be left alone to heal. Dagan and Leah are totally for this plan. They had wanted me to switch over to Sanford a long time ago.
Anyways, after they left--Allie sat staring at the door. "Where did all the people go?"
Miss Social loves it when they come to visit. :)
Because they were coming I was motivated to clear off the table for the first time in months!
Just meant more got piled in the bedroom...
...and on the top of the desk--lol! Too tired to purge...get to it later.
Oh, and BTW--almost forgot. I learned there are three kinds of immunotherapy and Keytruda is one of the "checkpoint inhibitors". Never really was told how it works exactly. Well, I got the basics--helps your immune system fight the cancer cells. But what little else I know I learned online.
Anyways--that's a huge change for 2023!! I am not going back for infusions at Essentia. I would go there for a scan if I am not switched over yet and feel decent enough to go anywhere in January...but that would be it. I want to find new doctors and go to the Sanford cancer center. That is a huge new change for the new year. Makes me feel hopeful again. It would be really nice to not have to buck the doctors and fight to be my own advocate when I am in such rough shape. Seems like Leah and I have had to do that all along at Essentia. I am just so lucky that the Keytruda has been shrinking the tumors!! :)
Oh, and Leah heard back from the flooring company and they plan to start on the week of January 16th! Whoohoo! Another big change coming this year. :)
And--my desk sold! The lady and her husband plan to come over after work on Tuesday to pick it up.
New Year's Eve I did my burning bowl ceremony and then picked an angel card. I asked what I needed to focus on this year with all these changes and all.
I got the Relaxation card!
Which is all about connecting with nature in any way you can (so I don't feel guilty for buying up some more bird seed--lol!) and to be aware of how we are all connected on this earth. Using relaxation in my life to help me to refocus and heal. (Heal!)
It was a perfect card. I have been getting more and more stressed as I have been feeling worse and worse...and then this last six weeks dealing with the awful diarrhea and this crazy sinus and mouth thing and all my bad joints swelling up--inflammation plus! Well, I could feel a weight lifted as soon as I decided on Wednesday--no more Keytruda. My decision--all on my own. And then when Dagan and Leah were totally supportive and Leah offering to help me switch to Sanford--OMG! I cannot explain the relief! Really does feel like more positive things will be happening in 2023!!
Anyways, Dagan and Leah were coming over Sunday with the boys to move some furniture to the garage so I even emptied Ian's bookcase in the corner.
Thought they could move my desk and the two bookcases to the garage...
...but it didn't happen.
Dagan and Leah could not get the hutch off of the base for some reason on the desk. Tried everything. So, hopefully the lady and her husband have a truck or something big enough to carry it in one piece. (If they show up--it is Facebook Marketplace after all.)
The plan is that Leah and the boys will come over and Dagan will come over after work. Dagan and Leah will move the desk out into the hallway so I don't feel I have to hide in the bedroom (I am still not getting dressed and am barely functional). Between the four of them they can get it down the hallway and out into their vehicle. That's the plan, anyways.
They did move Ian's black bookcase (lighter) out to the garage, but were afraid to try to carry the barrister bookcase across all the ice and snow. So--if it sells we will do the same thing if I am still in bad shape...get it into the hallway before they come. ;)
They were only going to move the furniture to the garage because it was easier for me to not have people coming over when I am such bad shape, you know? But if they can get any furniture that sells into the hallway--no problem. :) :)
I plan to use the empty space on that wall to stack boxes as I slowly pack things up. And Leah will bring over the file cabinet we got from Office Max on sale that has been in their garage.
Dagan and Leah didn't want to move Grandpa's desk into the garage because it is real wood and it would be bad for it to be hot and cold, etc. True--true. So that will stay where it is. I have not heard from my brother or sister as to whether they want it or not.
After McFamily left...Leah and Liam surprised me a while later by coming back with my Fleet Farm order! They put the rest of the wild bird seed bags in the garage and brought one bag inside for the bin. I had been down to some sunflower seed pieces...so the birds and rabbits were glad to see a variety of seed again I guess!
They were here in a flash!!
My sweet connection to nature. My joy! My physical interconnection with the world. My Relaxation! :) :)
Truly--the Critter Cafe has brought me joy and a peacefulness during all this health stuff. And Miss Allie does...and planning for my new forever home. Now I have to remind myself that it is okay if I can't get much done and am as slow as molasses in January with my purging and cleaning...that it is okay to just relax and refocus and heal. :) :)
It is a new year.
Big changes are coming.
Life is soooo good!
I've been sleeping a bit better this past week--(knock on wood)--even before I decided not to go back on Keytruda for now. So that's a good sign, too.
2023 should be a good year...maybe a really good year, eh?
I guess my word for the year is Relax.
I could feel the difference already.
Lifted weights...ahhh!
Thank you, everybody, for your prayers, healing thoughts, and good wishes. I have always felt those, too...and need them...and appreciate you. We are truly all connected and I send back good energy and wonderfulness to you, too.
Bless you!
Till next week, my friends!!
17 comments:
Hi Rita. Yes, 2023 does sound like it is a year that will hold many positive changes for you. I commend you for taking control of your own health and health care since you are unhappy with the current team and treatments. Yes, Leah is wonderful for helping you out with that. So glad you found a buyer for your big desk. It looks like you are making a lot of progress with purging and getting ready for your big move. So glad the flooring will be started soon in your new apartment. Have a good week and best wishes for 2023!
You poor thing! [[[hugs]]] I just had to say that, but it does sound like you have a positive way forward, and I'm glad to hear you have broader options for your heath care going forward.
I'm right there with you on the joys of connecting with nature. Your view is such a different one from mine, and I get such enjoyment from seeing your patio scenes :)
Those are big decisions, Rita. But they sound well researched and thought out, shared with family and with a positive plan for the future. I'm so very happy for you. And smart about moving the things to the garage too. I bet your new home will be ready before you know it! Happy new year!
"Relax" is a great word for 2023. Kobrossy can kiss my big pink butt.
Love,
Janie
You have obviously done a lot of research and thinking about your future health care needs, Rita. And, sharing them with Dagan and Leah and having them agree must also make you feel better, emotionally and mentally, if not physically yet. I was sorry to read that your continuing "d" problems have not subsided and can only imagine how exhausted you must be. I was interested to read about the side effects of immunotherapy that include dry mouth, which I have had more often than not and keep a water bottle on the nightstand all the time. But I have never had any of the treatments that you have described, so for myself I suspect it is due to the aging process.
Glad to read the positive news about the desk sale and hope the buyer shows up and can move it out.
Also, please do not be concerned with writing snail-mail considering your health issues. We can keep in contact with email for awhile if that's OK with you.
I truly think that 2023 will be a year of positive changes. It can't happen without our fervent efforts - - but our efforts will yield positive results.
I love the over-crowded Critter Cafe. It is wonderful to see the critters feasting in the dead of winter. The Arctic Hare is beautiful.
Allie looks so snug and cozy in her bed. I'd like to get a similar bed for my Bosco - but he prefers sleeping in my bed. It can be uncomfortable at times, because he's such a big cat....but he helps keep the bed warm.
I had no idea that immunotherapy could cause so many horrible side effects. I always thought it was a generally "safe" alternative.
I suppose nothing is perfectly safe....
"Relax" is a key word for the new year. Take care - sending positive thoughts your way.
Happy 2023, Rita. Lots of changes ahead and, after your research, it sounds like positive changes, too. Sounds like life is good and getting better.
Love seeing the Critter Cafe. It is SO fun to watch these critters outside your window. Glad you share these photos with us.
Here's a BIG 2023 HUG for your amazing choices and changes, dear.
Major decisions - but well considered, it seems. Life is not always easy, as you well know. One of my brothers-in-law is enduring a great deal right now and I think he put it well, "Sometimes a car is so old you can't get parts any more to replace the ones that have stopped working."
What a difficult time you have. I do hope that your change in doctors proves to be beneficial. And I hope you get the furniture moved.
Sounds like you have made a lot of positive decisions. Wishing you all the best with your health, finding a new oncologist and preparing for the move to family home. May all work together for a better year.
Hi, Rita. What a great angel card for the new year... relaxation! Now that you've made an important decision and feel very positive about the change of transferring to Sanford hopefully you can rest a bit more, mentally and physically, and keep healing.
Ahh, the birds and the rabbits enjoying their seeds, that's a beautiful sight. I can understand how you feel connected and joyful to be part of that.
Sending you a hug and best wishes for 2023!
~Mary
Good to hear that you are switching Clinics, I sure hope you get a good Dr at Sanford/Roger Maris...I have heard real good things about them. Happy New Year!!
This is hopeful, and I sure am wishing you to get better soon, so you can start dressing and recovering! I hope a new doctor will figure out how to help you. Hugs, Rita.
I hope you managed to rest and heal, it takes time
Great approach to 2023! I try to embrace optimism whenever possible. Hope all goes well with the desk, I hate selling things on Marketplace!
My word for this year is letitgo. One word. Because clearly if I'm going to survive, I need to let-it-go and let some ships sink all on their own.
Good that you got the desk sold and some stuff ready to move when the time comes around again. Here's hoping your health can settle a bit.
I am out of bed right now and want to thank you for your well wishes.
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