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.
Geaton, that was beautiful.
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. 😍
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.
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. 🫂 🫂 🫂
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.
1 Peter 5:7
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.
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.
And all Gods people said AMEN and AMEN!!!
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))💞
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 was doing my Bible reading just now and you came to mind. It was about how David played his lyre to calm Saul. David would take up his lyre and play. Then relief would come to Saul. 1 Samuel 16:14-23
Is there some soothing music you could listen to that would lend you some relief? I hope so.
Still praying for you always.
New crystal clear health coming in & up - sickness going down & out.
My thoughts of waves of health are being sent to you Lea.
Doc insists Ativan helps a LOT w vertigo, so I said a quick prayer and took one 1 hr ago. I feel nicely relaxed right now. I had what I thought was a bad reaction to that drug not long ago......but it could easily have been something else at play. Gotta try bc tbh, this vertigo SUCKS EGGS AND SO DOES USING A WALKER.
Alva, you pray to a higher power, as explained to AA members who are atheists. We all know there is a power greater than ourselves out there, whatever it may be, that we are but small beings in a tremendous galaxy. Many atheists began praying to nature, or a tree,and wound up finding recovery thru open mindedness. I know more than a few who were able TO find their Higher Power thru need and willingness to recover.
I'm not sweet at all and I was ready to kick that woman's fat ass out the door. Her surgically altered "tits" are nice enough, i suppose, but her ass looks like the broad side of a barn 🤣 She CALLED me tonight and I swiped right SO FAST! Call went to vm, I listened to it, she was calling to check in. Dense! 😂😁 My phone will be out of order for the next few months!
PB, love the vision and will share it with you.
Hope, since it made for a good story I guess it was worth suffering thru her nonsense.
Colleen, I'm looking forward to that window serenade...I haven't forgotten. You can sing me Benny & the Jets 😁😎
Oh the Tiramisu was a TRAVESTY and a sick joke, as I'd expected. A piece of yellow cake in the bottom of a cupcake cup, with whipped cream on top!!! My relatives are all rolling in their graves right now!😀😁😂🤣
Overall the food here is pretty good. The starter shrimp cocktail I thought OH YEAH RIGHT, which turns out to be 3 extra large boiled fresh shrimp on a bed of lettuce w lemon wedge and cocktail sauce. Perfection. So I order one w a chef or Ceasar chicken salad and it's great. Chicken quesadilla is exceptional too. I can even order Sobe Life waters. And all for the bargain price of $4k a night or whatever! Deal.
Fawnby, it always amazes me when people want to show their scars or believe we want them to do their version of feng shui in OUR HOMES😑 However, Chuck wants eeverrybody to see his awesome Mercedes scar AND the hideous photos of his before and after liver. 😨. The new liver photo is of the surgeon holding chucks belly open, wearing a blue glove, right after it was plunked down. The old photo is of an overcooked and shriveled piece of meat 🙄. He has a very large and LOUD personality and people love him for it. As in wearing a kilt to a wedding which I had to put my foot down on in the case of OURS. Down boy! Ha. A little Chuck goes a looong way. I've seen him pull out those photos on his phone to show women and they look mortified and run off. Can't take cues that only women in the medical field will appreciate such a thing? Shock factor means a better laugh for him.
She is a 10 burrito brick idiot, for sure.
Praying that your lungs clear and for lots of light distractions right now.
I can't believe it. YOU are so much sweeter than I am (or you simply don't have the strength to deal with her right now, because I know you CAN crack a strong whip) but I couldn't tolerate her. I would be there with "You ARE kidding me, RIGHT?? You are KIDDING me, right?"
You just want to say to her "so I guess this being about me right now is too much. How about we make it about YOU. Show me your breasts!"
Even with all the side effects you are up walking with PT. Afraid I agree about no sudden movements of the neck (or anything ELSE right now).
So, they did xray. Assuming if you had a pneumonia type thing, a pneumonitis, from too much forced bedrest, that would have shown up. I think DD has a right idea with the echo, because wondering if these so toxic meds are creating some cardiac side effects.
I can well imagine that once the distractions are away it is tough. Once folks go home and there's nothing to divert from all the "stuff". And from the pain. I am very glad of the tiramisu. I hope there's good stuff on TV. Then take the heavy duty meds and get some rest.
My love to you woman. Gather strength and sleep well. And yeah, I will pray those side effects go away. Someone asked me (someone kind and dear) that if I as an atheist say a prayer, who do I pray to. Well, to Lea's god of course! Who else?
I’m praying for you tonight. That those dang flood waters would pretty please recede already! Especially the ones in your lungs! Lord, please make it so!
You are treasured here!
Well, LOL 🤣! Your bad friend story beats mine, but mine’s close.
I’d made a dear new friend some years ago, let’s call her “Linda.” (We’re still dear friends.) She invited me to go somewhere one afternoon with her and her other friend “Tracy.” When Linda dropped me off at my house afterward, I invited them in and we sat down in the living room to chat. Whereupon Tracy started talking about her mastectomy and how the doctor had botched the scar. She then proceeded to take off her blouse and bra to show us, complete with detailed description of surgery and complications.
Finally she put her clothes back on, and Linda and I tried to steer the conversation back to normal. But then Tracy started telling me that my furniture placement was all wrong and got up and started walking around to view it better.
That’s when Linda said she needed to get home and began guiding Tracy toward the door.
Afterward Linda called and apologized, saying that Tracy had become a little strange lately.
Tracy didn’t get a chance to become my bad friend, and I didn’t change the furniture, either! 😀
Lealonnie, I hope you get a good rest tonight!
Tonight I'll just eat my chicken Ceasar salad and watch schlock tv to stay distracted. Along w a Tiramisu because hey, life is short. I may just eat the dessert first.
Thank you.
Other than that, (don't say it Alva) I'm feeling pretty ok w no fevers and the vertigo is more stable w the regularly scheduled meclizine. Walked quite a ways w the super PT I had today who gave me tips on what to do at home to get rid of it. Epley maneuver a no go bc of tumors in my neck, the doc won't risk the PT turning my head quickly and forcefully to one side. She must've said "this wreck of a woman can't go an hour w/o an issue, the Epley maneuver will probably break her neck"....sigh. 🙄
A bad friend came by last night, said the yellow gown is NOT MY COLOR, then proceeded to show me her lumpectomy scar to say what GREAT tits she has. I wanted to say yes, the doctor doing the breast lift was excellent. 68 yrs old and no need for a bra.....who are you kidding Becky? 😂 She then took a 25 min phone call while sitting bedside, lost the call and called BACK ! Then it was late and she had to leave, praise the lord. Who does things like this????
Today a good friend came by and there was no flashing of boobage for oooohs and ahs, just 2 hrs of great laughs and serious conversation. Her 16 yo son tried to overdose on Tylenol and was throwing up blood, but he's ok TG. Turns out 2 of his teachers are singling him out to bully, which was brought to her attention by the Spanish teacher! How on earth is such a thing handled? Our society is continuing to crumble before our eyes which greatly saddens me.
HHF, ty! Geaton yes, that is Chuck and I, he wearing his Scottish Douglass clan kilt, in the mountains of Colo at my son's wedding a few years ago. My favorite picture of all time.
Alva my profile has been working all along w no restrictions. I can't seem to get ahead of all these side effects. When I quit talking or typing, it's really making me depressed. My ex got thru 12 rounds of chemo and a year of maintenance chemo with no cancer pain and no trips to the hospital at all. He's left with some neuropathy in his feet after 7 years.
Well, we picked up our taxes today and...we owe the IRS $23. I would think under a hundred they would forget it. My daughter owes $4. 😆
Again, just checking in. Have a good night.
I have considered myself Abby Normal ever since.
I awakened to our site's new Mascot, the "Whoops Kitten" who has shut down any feed and private messages. It's almost a RELIEF, ha ha. Nothing left but our OPs, and you, Lea. If you should EVER need to private message I believe you have my private email for years now, but you can always get me through JoAnn if you need to.
Otherwise I don't do discussions anymore other than this thread, which I have come to love.
HopeFloats, I go to bed too early to get confused at night, but love your burritos story. I personally was thinking of bringing in the chain saw! Good for so many things other than burritos.
Lea, I now leave computer on later so I can check on you twice a day. I hope this day is better, and I hope these are side effects of that tough-to-take treatment, and that they continue to abate. I know we ALL carry you with us ALL THE TIME, every day, as we go about our days. YOU, my love, are my daily meditation.
"O God, be not far from me! O my God, make haste to help me!" Psalm 71:12 KJV
That is my prayer for you this morning that God will make His presence known to you in a mighty way and that He will help you through whatever the day brings.