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.
so our lives are refined by God."
- Proverbs 17:3 (The Message)
Why does scripture in several places compare God's relationship with us like being refined?
Silver and gold are rare and precious. The ancient refining process of these elements required paying close and undivided attention to the elements, over fire - a sweaty, labor-intensive activity -- and the only process to ensure a purified final result. I.e. God's loving efforts and attention is constantly on us during whatever "process" He chooses for each of us, because we have immeasurable value to Him.
LL, so happy to read you're doing better this morning! PTL!
I love your "bad friend" thing. Thinking who would be my "bad friend"? "Bad SIL" yes, a person I would have never been friends with. Oh the stories I could tell. And believe me she has not mellowed in her old age. I think she is trying but your always waiting for that shoe to drop.
((HUGS))💞
And all Gods people said AMEN and AMEN!!!
Bandy, they must have forgot the liquor in that tiramisu! We are going to have to send Chuck out for the real thing!
Lea, I don't believe in a higher power, either. We all understand I am hopeless; but happy to be tolerated. And ready to be surprised, as I have so often BEEN surprised. I am not a humanist, either--not a lot of use for mankind in general. I guess I am all chaos theory, tho there seems such a perfect symmetry in many things (snowflakes?). Some might add, then what created the chaos. I am, again, ever so willing to be surprised with the answers. Question is, am I capable of believing them? Will save the rest for philosophical studies night. THEY have given up on me, as well, hee hee.
So glad that the lungs are so much better. I sure hope you tolerated a night on the ativan. Would love this dizziness to abate for you.
Have been off the site for a couple of days. Just checking in.
My word, I am with you in regards to your ‘bad’ friend’s behavior. She sounds crazy! I’m glad that it was counteracted by a visit from a ’good’ friend.
That tiramisu sounds pretty sad! Indeed, your Italian relatives are spinning in their graves.
I will certainly be praying for no more side effects or disappointing lab results.
I will also pray for Chuck. The two of you look so in love and happy together.
I bet your spoiled pooch misses you too! She is very cute. You had her photo on your avatar for a long time.
Sending much love and many hugs to you.
1 Peter 5:7
Apparently Dr C expects I'll be wheeled into my infusion on Thurs, with 02 on, and dizzy as hell! I wonder if I'll be wheeled out on a gurney after they call 911? 😮 That is how I feel right now and I asked to have him CALL ME TO DISCUSS. This w/b infusion 3 of 4. I think a 1 wk postponement is in order, but I want to know if that would set me back any From an effectiveness perspective?
Sick to death of wires and tubes and ANOTHER BAD IV this from the expert w magnifier who jabbed it into my outside FOREARM which hurt a lot.
Alva, in case you can't tell, I could use that metal bed pan right now, preferably 6 so I could make a REAL racket. As for your staunch atheist status, go for it. We know where you stand now 100%. I can imagine your shock and disbelief when you find out otherwise. We'll have a good long laugh over it when we meet up over THERE one day 😎!
Gershun.....see what I mean about men and their scars? 😂🤣
Funky, sorry to make your prayer for today go unanswered.
Beatty, lovely picture you paint and boy what I wouldn't give to be lying on a beach somewhere right now instead of a hospital bed wrapped up in wires and disheveled sheets and blankets. I should tie the damn things together and hoist myself out the window to freedom. Vertigo sucks.
Bandy, of course I believe God and my father both are giving me the strength to forge ahead! Cuz it's not my grace or courage that's doing it, certainly. I'm sick to my stomach at the prospect of treatment 3 this Thursday, I can't even tell you. Who knows though, maybe this next duo treatment will knock the old symptoms out. Watch this, those bags will say, as they pummel me into a whirlwind of all NEW and miserable side effects. God help me.
As far as eating the Tiramisu first goes, not THIS chit they're pawning off as the rich and decadent dessert it should be, ha. They also bring me a "strawberry milkshake w protein" in it every day at 2. What ice cream do you know of that turns to foam when it melts???? Yeah, none. Pawning off some powdered shake as a "milkshake" has me leaving it untouched. Chuck horked it down today bc he's a stress eater.
You can't try to imagine how I feel bc you've not experienced such a shocking diagnosis. Thank God. Nobody knows how they'll react to such a thing until and unless it happens, either. All along I'm pretty steady in my acceptance of the outcome here, ONLY bc I don't fear death and know that my soul is eternal. I'm so glad I felt so COMPELLED to do all that reading and research the past 10+ years. It's literally my saving grace. I see what raw fear of death looks like and feel thankful to God for leading me down the path to finding the truth. Amen.
What I fear is the pain and suffering from the treatments, tbh. I want to be in decent enough condition to enjoy the rest of my life, be it 2 weeks or many years, not a hobbled shell of my former self.
I don’t know how you’re still making us smile, in the midst of vertigo and dumb zaps (I had them after a cold turkey stoppage of a med, 8 years ago. No dang fun!), but it’s gotta be God.
Keep on keeping on, Our Treasure! We’re praying for you when you run out of prayer. Believing for you when you can’t believe for one more second. Cheering you on, when you’re too tired and dizzy and sick of it all to do it yourself. 🫂 🫂 🫂
I don't know how you go on telling us all and all with all that is hitting you, and I hate that you feel worse than when you came in. I just wish I knew WHY you feel worse. Is it the cancer or is it the treatment? Because we both know you can get bludgeoned by either. You always manage to give us a grin and a giggle when you can. You amaze me.
I can't see how they can send you home tomorrow and I am wondering if your girl will be with you? You know, private duty. I worry otherwise. You are getting hit too hard in too many systems. It IS like whack-a-mole. I always remember either John McCain or his daughter using that expression. I am so glad you will make the docs with you and tell you what they think and I hope to goodness you don't get what my old oncologist used to give me with "Who KNOWWWWS. It's anything but an exact science."THEN told me he could tell me that because I was an RN. Then I told HIM that I was not at that moment an RN, but a patient. We had some go- arounds, that man and me. He's dead and I am 80! (He was older than me, guess he was bound to go first.
I don't know if your DD will agree, but I see few patients, no matter their beliefs, and I had the full diversity, approach end of life with fear. Saw many with wonder. But yes yes yes to the fear of pain. I am a dreadful coward about pain and fear, tho I fear death not at all. Most people are just made that way.
No one has yet told you about that echo and results? I would just like to know the heart is tolerating treatment before another bag gets hung. I am sure they will read things Monday a.m. I am hoping for a week of healing and I cannot believe you are already close to another infusion.
Checking in in a.m. and hoping for a break in this storm.
No results on the echo. I was eliminating fluids on my own which is a great sign my heart is fine. EKG was too. DD is gone for 2 weeks in Fl. 😑
As the word goes here, it's either the cancer or the treatments wreaking havoc and causing all the chaos. Main systems in good shape. I feel like crap bc of the vertigo and now the coughing, but they can find no REAL issues working against me like colitis or kidney failure or any of the symptoms that require treatment to stop.
Outpatient services deal w vertigo.
When I asked Dr C last time why my right side was hurting, he said WHO KNOWS and yet, one bad symptom to call his office on is "right side pain."
Colleen, I just love you. Truly. That's all. 😍
Geaton, that was beautiful.
I'm happy for you that you have no fear of dying. As a believer I know I'm saved and yet still fear death. I can't imagine I would ever be sitting in your position posting about it. I guess nobody really knows how they'd react.
I hope you beat this thing and then you can come on here and talk about how you conquered cancer. Still praying............
I bet there are so many here that could say the same.
Someday, when you end up looking down from heaven, you will see the generations stemming from all of those you helped back from the brink.
These will be generations of people coming from those who, through your words, figured out that THEY weren’t the crazy ones.
The next generation will have been told and prepared by their parents that Dementia looks like “this symptom” or “that wack-o behavior”. They wouldn’t have been knocked off kilter by the stress of some previously unexplained zombie illness which has taken over their parent.
Each generation will be better educated and better equipped, and hopefully, experienced less suffering and more proactive caregiving.
You’ll see them all, then turn around, and be greeted by Our Savior, who will most assuredly say, “Well done, good and faithful servant.”
What a glorious day that will be!
My prayers for you continue, in earnest. I know this is an anonymous forum, but how I wish we could all be by your side in that hospital room, spilling out into the hallway, telling stories, reveling in your quick wit and unending faith - and the laughter, oh the laughter! The nurses would not be happy with the lot of us😂 I truly hope you know how you have touched us, as cxmoody so eloquently wrote. ❤️❤️
"The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. It’s our handle on what we can’t see. "
- Hebrews:1-2 (The Message)
Hebrews 1 is considered the "Faith Hall of Fame" and is inspiring but too long to post here. I highly recommend reading it.
https://www.biblegateway.com/passage/?search=Hebrews+11&version=MSG
And
"Then Jesus told him, “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.”
- John 20:29
And,
"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
- 2 Corinthians 4:16-18
LL, keep your eyes on the prize! xoxo
All I can say is your one brave person. Hope today is better.
Basically, if they looked at all the systems and they are doing OK with this, then it is ONLY YOU that feel like trash. Again, teasing you, but sounds like maybe you could go home if they say so, maybe being with YOUR little dog would be the best medicine. I get what you are saying--that everything they can test is holding pretty well with the exception of things they see as side effects of a treatment this tough to take.
And as to why God would keep my dogs? I don't know. I never understood the guy. But really, anyone would want my dogs. They WERE all such good dogs. Again I am kidding you, but if I were a believer I think I would be the maddest one out there. I always have studied faiths--ALL faiths. Always been so interested in them. I love that the Jews think it perfectly right and normal to argue with god. The Rabbis get out there and ARGUE things. No bible study where someone teaches what you are to believe, but rather a good red hot argument. I kind of love that thinking. But you know me!
Today has GOT to be better. I will hold out for you being able to go home. And for feeling better once home. And then on to the decision ahead from a stance of strength.
I am in your corner and punching. Feeling frustrated. I feel today like I just cannot HAVE another bad day for you. I still remember patients I didn't want to have my day off, I didn't want anyone else there for them. You see how untrusting I am! And how quick to anger. "Do not TOUCH my patient!" sort of thing. I never used to get faint or dizzy from anything I saw or dealt with, but I did get dizzy when my patients were in pain. I was the worst nurse to have at your side while you had a lumbar puncture; likely to faint right over you, hee hee.
All to say, I want this to be a good day for you. I want that so much.
Echocardiogram was perfect TG
Heres what I've determined on my own: meclizine 25mgs MAKES me dizzy. I felt good when I woke up, then after meds, my head is swimming. Dosage cut to 12.5 mg and the doc saying it's not true meclizine causes dizziness can kiss my arse. ALL meds are disagreeing w me lately, period.
When I feel weepy, check 02 it's likely low, not depression (which is a valid and separate matter)
A resistance inhaler called The Breather is MUCH BETTER than an incentive spirometer bc it's super easy to use so it's USED. Vs the infernal IS that's thrown by the wayside asap.
I'm glad I'm in tune w my body vs having to rely on being TOLD how I feel.
I asked to speak w my oncologist about the prudence of delaying my infusion by 1 week. Which translated to "she wants to delay her infusion by a week" which caused the nurse to reschedule it. When she called me this morning, I told her that's not what I requested. Oh she'll refer to her notes. I DO NOT care what your notes say, I'm telling you personally what my request is. Oh my doc is on vacation FFS. No other doc available to talk to. Really? A week I'm here I've seen an oncologist for a total of 10 min and she ran in very late to sit w the other 2 docs! So the nurse arranged for me to speak with a mid-level person ( whatever that means) today at 330. Meanwhile, when the regular doc came in she said a mid level person will NOT answer my question! CYA principle and all. She'd already spoken to an oncologist at my practice who said it definitely fine to delay infusion a week bc they last 9-12 weeks!
Arghhhh. THIS is medical care in 2023, sadly.
But I get to go home w oxygen sometime after 1pm, praise the lord.
I slept like a log last night too.
Sp you said it!
Alva, I'm going home by hook or by crook lest they want to find something else out of whack. And GOOD RIDDANCE to Lovonox injections in the belly 2x a day😑
Thank you everyone for your supportive words. I'll post later when I'm back home w Honey on my lap
(That's how my son used to say it when he was a lil boy) :-)
Annnnd,
just shaking my head at how docs dismiss us when we tell them about medications’ effects on OUR bodies! 😠
Good sleep is the ticket.
You know of course that after 1 won’t be anywhere near 1.
Enjoy today and give our best to Chuck.
97yomom the doc hasn't even written the DC order 3 hours later so yeah, lucky to be out of her by 5pm.
Colleen, docs think they're gods, many of them. I had to hear today that I haven't had any fevers here in Hospital even though 4 out of 6 days I have. A "real" fever is 100.5 and mine have been under that by a hair, so.....meanwhile my normal temp is 97.5!!! You bet your sweet bippy my fevers are real.
It's times like this I'd love to be under the care of real cancer specialists like MD Anderson, Sloan or Mayo. They'd know what all these issues are right away and not dismiss me like I was whacko Betty. Sad. This experience is going to make me verrrry leery about calling the oncology office about side effects again. I will if there's something really bad going on, o/w I'll figure it out on my own.
You’re absolutely correct about MDAnderson. They are fabulous! My mother in law received great care from them.
I hope with all of my heart that you will start to feel better soon.
Having fever on top of everything else that you are experiencing must be so tiring.
It’s interesting, because when I would take my daughters to the pediatrician when they were young, the pediatrician said that she wished that the thermometer either read ‘yes’ or ‘no’ instead of the exact number of degrees.
She said that a person with a ‘low’ grade fever could actually be much sicker than a person with a ‘higher’ temperature.
Will continue to pray for you. So many hugs 🫂 going out to you today and always.
Thrilled that you are going home! No one ever gets any rest in the hospital. They are constantly doing this or that for one reason or another.
Your sweet pooch will be delighted to see you!
I think I am feeling combative because of all you are going through. I can't fight for the cause so I am ready to fight about digital coupons.
I know what you mean about the "great" hospitals that are treating cancers as specialties. There is another side of that in that they are cutting edge, and often are using things as yet unproven. Sometimes they work and it is how we learn and how we get new meds. But sometimes the outcome is disasterous and you are the guinea pig. And you never know which category you will end in. They are both wonderful and not. I am one who kind of hates dealing with "teaching hospitals" due to the number "learning". You know, learning to put in picc lines, learning to do central lines and etc. There's no answer to being in the hands of the medical community. Certainly full of both highs and lows. And whichever you are currently in you are kind of trapped there.
Have you talked to anyone about Thursday's treatment or is that something you can do by video from home with the doc who actually orders it?
Wasn't aware Bandy was heading in under the knives; wishing her well and healed.