First, the good news: Chuck is doing very well with his liver transplant. April 29 will mark the one year anniversary of his transplant at the Mayo Clinic. He's showing no signs of rejection, is off 80% of his medications, and his follow up tests and visits show him to be a super star. He's back to photographing birds every morning with my son, even in minus 5 degree weather, so that pretty much says it all. My avatar pics are of his birds.
Now for the bad news: I've mentioned before having a surface melanoma on my arm removed in October of 2021. An "in situ" mole of no consequence where all the melanoma 'was removed successfully'. This was a result of having a dozen beauty marks on both arms blow up like balloons after the 2nd Covid shot, grow scabs on them, and when the scab fell off, the beauty mark disappeared entirely. Except for the one. And all of it was not successfully removed after all, as a few cells must've escaped into my body and caused metastatic stage 4 cancer in my lymph nodes, liver, and bones. I went to the ER 3 weeks ago for excruciating pain in my left side where a CT scan with contrast was ordered. The cancer was discovered at that time, and I've spent the last 2 weeks in testing. The cancer is not in my brain, thank God.
The Oncologist told me there is immunotherapy available now for malignant melanoma. 2 types at once, administered via IV (no port) every 3 weeks x4. That's the goal. To turn on my immune system to kill off this cancer. 50% of immunotherapy patients are alive 2 years later. Idk what the percentage is at the 5 year mark. I've avoided doing research bc I'm overwhelmed enough already.
I'm having tremendous pain in my spine, ribs and liver, where the cancer is the worst. The Oncologist gave me some heavy duty pain meds and told me to wait it out until the IV starts kicking in to relieve my pain. He said I would live less than 2 months without treatment so my first treatment is tomorrow morning. The side effects can be gnarly and these infusions WILL kick my butt, he said. I'm ready, I think. Ain't no beauty mark gonna take ME down at 65! 😑
I'm useless at home, so Chuck is doing everything. Laundry, cooking, grocery shopping, driving to appointments. I have a housekeeper coming in to do the heavy cleaning and my stepson and his wife are cooking 7 dinners for us and bringing them by on Saturday. I have to make sure HE'S not overworked during this treatment process to where he gets sick. He's already overcome with worry and shock over all this as it is. I'll ask my stepson to repeat that meal making plan, too...they want to help & we need help.
We've had a lot to deal with the past year, and now my issues, which were there all along, just not apparent until recently. We wouldn't have been able to handle TWO of us sick at once anyway, so this is how it had to play out, I suppose.
The one bright spot I hold onto here is the dime I found on the floor of the ER room I'd been in ALL DAY where there was no dime on the floor. And when the gal was wheeling me back into the room from the CT scan, there it was. I kicked it across the floor to Chuck and he said, "what's that?" I said, "it's a dime from dad, telling me everything will be alright." He was speechless. Dad used to send me dimes all the time after he died in 2015, but stopped the past few years. I have a whole piggy bank full of them.
We can use all the prayers we can get right now, friends. I believe in prayers, in miracles and in signs from our deceased loved ones that they are with us in tough times. If you do too, please send up some prayers for Chuck and I right now.
Many thanks.
My son came by yesterday for a visit and was suggesting ideas to get me out of the house. Getting a wheelchair to push me around the neighborhood was one. Feels rather awkward, if you ask me.....to greet all my nosy neighbors who will suddenly want to rush out to say hello. Having to tell My Story over and over again sounds depressing. But I said Maybe. I should disclose that I live in a patio home development of 66 homes inhabited by mainly old nosy crotchety people who are in perpetually bad moods. I was 45 when I bought my house brand new and DD was 12. When she rode her bike around the neighborhood, the jackasses would yell at her to GET OUT OF HERE KID. The other idea DS had was to rent a convertible and take me for a drive with the top down. I thought that was sweet. I'm not great in the car, but I might not mind such a thing! 😁 His goal is to keep me from losing my mind while this issue runs it's course, even if it takes a year. He and Chuck are convinced it WILL go away.
The Valley Fever lung fungus test came back negative. Cannot blame the dizziness on anything but a toxic reaction to the immunotherapy now.
Chuck leaves at 5 pm to see John Fogarty at Red Rocks tonight w his bff who's got lymphoma cancer from Roundup. He's survived 5 grueling years so far and even at deaths door a few times already. The last tx he had of a bone marrow transplant from his sister saved his life but left him w graft vs. host disease which is horrible. He's got lymphoma in his legs SO badly that he can barely walk. But his handicapped sticker will come in handy for them bc parking at Red Rocks is a 1 mile uphill walk and dreadful otherwise 🤣.
I am walking laps in my hallway every hour (50 feet per lap) 4x each hour. I'm pretty out of shape after all these months of chair and bed life, but this is a good start. I feel half dead after I finish, but I can feel my blood pumping too. It's gotta start somewhere.
Beatty, I bought a bamboo/wooden brush that the head doesn't detach....its one piece fortunately.
BB, yes, too much togetherness gives me visions of strangulation.....🤣😃
UCH gave me a 10mg taper schedule which I cut down to 5. So it'll be 5 and then off.
Geaton......for me, the mosquito situation in FL was the worst since I'm so allergic. So between the heat, mosquitoes and the rest of the allergies, my asthma was out of control 24/7 and we had to move to CO.
Thinking of you every day. Hope you enjoy the brief separation from Chuck. Too much togetherness isn't a good thing, I can attest to that!
I bought a cheapie from the supermarket or chemist when my shoulder played up. Then I discovered how nice it was for my lower legs.. until the brush head slid off the handle & landed on my toes. Ouch 😔
Apparently the brush head slides off the handle so you can use it like that too. I've wedged it on tighter now!
So please check yours!
Roger that, LL.
Many people think that Minnesota in the winter is incomprehensible but please understand you can always put on more clothes and still go outside to enjoy a sunny, windless -20º F day. Not so in the summer in Hell's Kitchen (aka south FL): you can remove all your clothes but once you do, you won't be any cooler and then you'll burn to a crisp...or get arrested.
I am sorry that you are still dealing with your dizziness.
I figured that you must have some kind of chair in your shower because you don’t seem stable enough to shower standing up yet.
Bringing the walker in is a good idea.
cx, enjoy your trip! I am going through gallons of iced tea right now with our heat! A friend of mine from Boston asked about visiting us. I told him to hold off until September or October and then we would be happy to have him for come over for a visit.
Cx, a trip up north in August sounds great. I hated living in Florida in the summer.
Hugs from Fl, where it’s hotter than blazes, of course! I’m looking forward to an August trip up north!
☀️🕶️⛱️
I hope your your new brush will help you to shower more easily. Has the dizziness let up any? Do you use a chair in the shower or can you stand without falling?
As always, sending hugs and all my love to you today.
attempt a shower with the new long handled brush I bought so I can reach my feet w/o bending down and risking a fall. Too bad it took nearly 5 months to order it 🙄. Better late than never I suppose.
We had to wait until the second week of July for summer to arrive here but now it's hot, in the high 80s and mid 90s. The rain has stopped too, at least for now.
I hope you all have a great day.
And, good for you guys that Chuck will be able to get away. Absence making your hearts fonder, and all that! 😂
Congrats in advance to your daughter! Praying right now that you feel well enough to enjoy all of the festivities! 🎉
I am glad that you are feeling a bit better.
The doctors will continue to study those cases and yours for many years to come.
The practice of medicine is fascinating and amazing.
My heart skipped a beat when you announced that you were cancer free.
Your combination of faith and determination to follow all of your grueling doctor appointments and hospital visits really paid off. You pushed through many challenging moments and made it!
I continue to be inspired by you and I hope that you know I keep you in my thoughts and prayers.
Kite setting SS are prongs at the compass points.
(((Hugs)))
I do remember what you said about your BPPV after covid Geaton. Trying to imagine myself THIS disabled for a year feels horrible, I will say.
RD, ty for the pep talk.
Llama, HHF, CXM, thank you for always being there for me. Love you guys.
I am definitely feeling better emotionally although God knows WHY. The rollercoaster of emotions has been awful, and having the tears dry up has been a good thing. Chuck will be gone on Fri night, all day Sat and Sun (to Scottish festivals where he sets up his tent) so GOOD! HA! Some alone time finally.
Plus, my DDs bf took her ENGAGEMENT RING shopping yesterday and purchased one!! A princess cut stone w a "kite setting" whatever that means. The photo is lovely. Don't know when he will pop the question though.....lol.
I totally agree with you. Having some depression is absolutely normal when going through life changing experiences.
It would be abnormal not to feel as though this isn’t a big deal.
Darn Dizzies!!
Has there been any cases similar to yours that you can draw upon in gathering information about how this will run it’s course?
I suppose my question is completely dumb because we are all individuals who have individual reactions.
Your situation in dealing with your particular cancer scenario may be one for the textbooks! Everything is well documented these days, so doctors will learn from your experience.
Saturday I'm down to 5 mg and then off, so we'll see but I have little hope for "feeling better" once off the steroids. More like going back to how I felt beforehand but fatter and much worse for the wear now. 🙄
Thanks for the kind words and keeping me in your thoughts, ladies. I appreciate it.
You have been through hell and back. I am not surprised that you are struggling with depression.
Some people panic in a crisis. Ah…that is what happens to me. I am not especially good in a crisis.
Others plow through a crisis and then fall apart afterwards. I have a friend who is that way. You strike me as coping well in a crisis.
My friend is incredibly strong during a crisis but as soon as it’s over, it’s like reality sets in and it hits her like a ton of bricks. Then she falls apart with a crying jag.
So, maybe you have been surviving all this time on autopilot to get through this horrific experience but it is only now that you realize what you have been through. Plus, you are so sick and tired of being sick and tired!
I so wish that all of this tapering crap was finished! When it is finally over everyone will breathe a sigh of relief for you. I’m sure that you know how much we care about you.
Take care, Lea. One fine day, this will only be a distant memory for you.
My thoughts and prayers are for you.