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.
I’ve been off the forum for several days and just saw this. You certainly have my prayers for your healing and for Chuck to continue to do well. I read that you now have less pain and understand that side effects are minimal right now
Alva said it best: “Your strength and your courage have ALWAYS been a beacon to us all”
“But they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.”
-Isaiah 40:31
LL, I think of you every single morning.
Are your kids able to visit? Are you up to it?
Praying as you come to mind.
Check In when you can.
Thank you Geaton and Send. I am waiting for the Lord to strengthen me, yes.
Peace, I am having no side effects from the treatment as yet. Thank you for your kind words! 😁😘
May God heal you soon, body and soul, together with others who suffer illness.
And let us say: Amen
As to stepson it sounds like he should be in a catering business. I cannot imagine all this good food.
I hope they are babying you real good, and it sounds like they are and that you are allowing yourself the comfort, warmth and love surrounding you.
You are so in the thoughts of us all.
Hospice reports her vitals remain strong but the infection gets bigger and smaller, back and forth. The cognitive issues are really getting worse.
You deserve good health and I hope with all my heart it is restored to you. Your good wishes have always meant a great deal to me.
I don't know how long a journey we have left. She can change greatly each week but it is never good. At least she is fairly calm amidst the confusion. Keep getting better.
We all say how awful it would be to lose our mind. Hey, do you feel mom was aware of her diminished cognitition when she asked you how your parents are? Being unaware of something means it does not exist, for all intents and purposes, especially in this case. God bless your mom and keep her as she is now, blissfully unaware of what's going on, until He comes to take her home. I'm so glad she liked that prayer.
Sorry Alva, I'm sharing none of this amazing food and try to touch my heating pad and you'll draw back a nub 😂
Amen Barb
everyone on this forum is not just rooting for and cheering for your healing and recovery - but BELIEVING AND KNOWING IT - with faith. Please rest, and let the people around you care for and love you - let others reciprocate the caring and empathy you always show to others ... it is your time to receive now- blessings and strength - xxxooooo , Laura
Hang in there, sister.
Lealonnie, I just now saw your post. I am so so sorry to hear this awful news.
I do believe in the power of prayers. I will say a prayer for you and Chuck each night, my friend. ((((Hugs))))
"Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress,
my God, in whom I trust.'
Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart."
- Psalm 91
I know someone who refers to her daughter as "Chef Girl." Well, I want to refer to your stepson as "Chef Man." And Chef Man needs to keep sending you meals so we can all read about the delicious food he makes!
You are being so well loved-on and taken care of at this time of your life! My prayers for you will continue.
GG, Chef Man also works a full time job and is a dad of a 6 year old. Super Chef Man is more apt I think 🤣😂
Geaton, another good scripture du jour.
Polar bear, I know the feeling. I just had a pretty big OMG OMG moment yesterday. Thank you for your daily prayer and also the hug.
So the past 2 days my body temperature has been all over the charts. I'm freezing or sweating bullets even more so than I usually do. I'm to call the nurse if my fever goes up over 100.5. Today it hit 101.7 but nothing besides the usual pain is going on, nothing new in other words. So she told me to take 2 Tylenol and wait an hour to see if the temp went back down to below 100.5. Otherwise, we'd have to go to Urgent Care. It went right down to 99.5 so that's that. The nurse said it's super common to have serious body temperature fluctuations with immunotherapy but this is a bit much. I'll call her towards the end of the week if this turns into an ongoing daily issue. I hope not.
Thank you and Barb for the prayers
I come here each day to check in on you woman. I wish there was a way this could be easier for you, this fight. Just know we carry you with us in our hearts and souls as we move throughout our days.
I have always found heat to be comforting too. My husband does too. He used a heating pad often on his shoulder before having his rotator cuff surgery. Poor guy had surgery on both shoulders!
After my severe bicycle accident I did aggressive physical therapy. I had a horrible open compound fracture on my arm which required steel rods to be placed on my bones.
I loved the heat in physical therapy and wanted only that. They rotate heat with ice. I didn’t like the ice but know that it was necessary for healing.
I am glad that you are finding comfort with the heating pad. Keep the faith. We are all still praying daily for you! Many hugs sent your way!
“No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”
- Romans 8:37-39
That and the temperature fluctuations sound to me, a complete non-medical type, like your body is responding!
Gosh, it brings tears to my eyes to think of all of us praying from all of our parts of the country!
LORD, thank you that we can bring our requests about our friend to You. LORD, Your Word says that You are her strength and her shield. We ask that you surround her with this strength, and heal her, so that she can continue her ministry to the hurting. She’s such a gift to us. We thank you in advance. Amen.
I am so very sorry to hear that you are battling cancer. But you are strong in body and mind and very smart so these things will serve you well.
Bummer that your temp is all over the place and interfering with your ability to sleep at night. I always found with the kiddos that their temps tended to spike in the afternoon so maybe that's a thing for you too.
I don't know if you're into natural remedies and "food as medicine" type of things, but one thing I know is that sugar feeds cancer so try to severely limit it. I know it is in many of our comfort foods but your ability to fight this bad boy is more important than that at this point, at least from my perspective.
Heat sounds like your best friend these days and I totally agree that it is quite comforting.
Sounds like you're already getting some relief if you can sleep on your left side already. That's amazing! I think it's a VERY good sign!
You will be in my thoughts and I'm hoping for your continued recovery. You got this girl!!!
Keep
“For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.”
-Romans 8:24-25
I know you mean well but LL needs to only do what her oncology team recommends.
From the Mayo Clinic:
"Myth: People who have cancer shouldn't eat sugar, since it can cause cancer to grow faster.
Fact:
All kinds of cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't make them grow faster. Likewise, depriving cancer cells of sugar doesn't make them grow more slowly.
This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true."
Source: https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714
Sugar gives the body energy, which LL will need. It's just a matter of how much she needs. She may already be working with an oncology nutritionist, who will give her the appropriate medical guidance.