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Staying strong and facing an uncertain /certain future
Two weeks ago my husband and I met with his nephrologist. He has been in kidney failure for several years but nothing changed too much for awhile. At this visit his GFR was 17 and creatine was 3.4. Last year she had us go to an informational training with a nurse that covered dialysis and transplant. At this appointment she told him he was not a good candidate for a transplant because he has a pacemaker and he is 74. Also she said the numbers are not as important as his symptoms. Currently he is very fatigued and sleeps or naps most of the time. I volunteered to be a donor and so the doctor referred him to the transplant team.
I found out that at this transplant center they do not accept donors over 70 years old. They do at other places though, but he doesn’t want to go anywhere else.
To try and shorten this up, since last week, I have been crying over anything-I mean anything. Yesterday I went to the local store for broasted chicken and they were out. I started crying and couldn’t stop. Crying when I unloaded the dishwasher because he usually does that and he was too tired. Crying if I even think of any kind of chore or problem I need to do.
Last year my father died, my brother-in-law died, my uncle died, a good college friend died, my sister-in-law died. I was injured and had shoulder surgery.
It is all just so much. I am a strong person, but I can’t seem to get control of myself right now.
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Oh my Lord, that is too much for anyone person to take on. I feel so sorry for you. Would you consider talking with a professional? You really need help to sort this all out and you can't do it alone...who could? Please consider this option. Let me know what you think.
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2 ReactionsI’m so sorry you are going through all of this girl ! We just found out my partner has esophageal cancer at 59 ! I too have been crying a lot, and I’m not a cryer! I’m here if you need a shoulder !
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3 ReactionsThat is AMAZING Chris ! Beautifully said ! Be grateful for every moment and live for the day ! Xx to you
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1 Reaction@jprust how are you doing now? You seem like you have developed some ways to cope with the hard days and spend more time enjoying the good days. I see that you have been helping others learn how too. What a gift you are to this community.
I really felt like I wanted to check in on everyone and just say I am thinking about you, and want to know how everybody is doing in this time of the sand shifting under our feet.
@opheli @jp2023 @caregiver29 how are YOU doing?
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4 Reactions@auntieoakley I (we) are hanging in there … we just found out today the Doctor is thinking it’s stage 3 …but we should find out more Friday once the PET results are in . Thank you for asking 🙂
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2 ReactionsI just started this journey several weeks ago. And I thank you for your words of encouragement and wisdom. To treasure The good days my husband is awake and feeling ok and enjoy the time and not worry about what is coming next
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3 Reactions@lp23 Welcome to Mayo Clinic Connect. The journey of an uncertain future can be difficult, and reading how others cope with the challenges can give us ideas and hope.
When I was first diagnosed with Systemic Lupus in 1988, I railed against the idea of slowing down, so I didn't. Until 2015 I worked full time plus, in challenging fields. I set aside my aches, pains and newly diagnosed conditions, determined to do what I wanted, not what a health issue demanded. Now, I have modified my outlook, am grateful for knowledgeable doctors, and the guidance they offer me. Each day is a gift, and I look forward to being able to help make a difference somehow.
Ginger
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2 ReactionsTomorrow my husband starts his chemotherapy/immunotherapy for lymphoma. I find that I am more afraid of the treatment than I am of the cancer. Afraid Of the uncertainty of what’s to come. He’s going in seemingly healthy, other than having cancer. I’m grateful that he is starting out strong and pray that side effects are minimal. Thank you for sharing your coping skills. They have helped me already.
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4 ReactionsHi, @valandsheri. Who’s more nervous, you or your husband? ☺️ It’s so normal to feel this way before beginning a new treatment. Especially when you’re just entering that odyssey of chemo and cancer. That always conjures up the worst of our fears. Most of the time, they’re unfounded.
We get through one day at a time, the chemo does it job for us and then, if the meds do what they’re supposed to do, we go on about our lives with a new appreciation for what we’ve endured and how brave we are.
Having had serious blood cancer myself, I can vouch for the advantage going into treatment healthy and hearty. It does make a huge difference.
However, he will have some side effects. That’s inevitable. I think you mentioned in another post that he’ll be taking Bendamustine and Rituxan. The Bendamustine may leave him feeling some nausea or fatigue. His white blood count may drop. The Rituxan is an immunosuppressant so both of those meds will impact his immune system, making him more vulnerable to infection, colds, etc., It will be important to be mindful about exposure to Covid, flu or fungal infections (no gardening for a while).
The nurses in the infusion center will take great care of him tomorrow. With his first infusion they will go slowly. If there is a reaction to Rituxan, it is usual in the first infusion and rather common. The nurses will give him meds beforehand to lessen the reaction or have it standing by in case he needs it. Usually if that happens, slowing the drip rate is all that’s necessary.
Have him take a bag with snacks, something to occupy his time like crossword puzzle, ipad, etc. They can take up to a couple hours.
You’re both going to get through this. ☺️ I think the caregiver roll is worse than that of the patient sometimes. I watched my husband age while I underwent all of my excitement. He bore the brunt of all of it while I just sat and let my doctors make the decisions. But here we are on the back side of treatment, 4 years later and it’s as though nothing happened. With his treatments, we’ll hope the same for you and your husband.
Let me know how he does tomorrow! And you…☺️
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3 ReactionsOh Lori, thank you for your precious words. Courage appears, sometimes, from unknown sources, and you just helped me "strap my courage back on". I am grateful that you are here. It is definitely me that is more nervous. He is such a warrior and has a great outlook. He is a little worried about side effects - as he says "he just doesn't want to feel like crap". I worry about all of the other things and in my panic annoy him with "wash your hands" "don't touch your face" "keep your distance"....my hair is turning a lovely shade of grey and treatment hasn't begun. On a funny note - over the weekend we were out riding our UTV in the desert and I was driving and he was giving me confusing directions and I asked him to either say turn right or turn left, not to say "go straight" when there was a turn option. Out of the blue he said "I don't have to I'm in treatment". He had me laughing so hard that I had to pull over for a moment. I told him that he still had to give proper directions even in treatment! Thanks for letting me share that silly moment - I cherish them.
Thank you again, and I will let you know how tomorrow goes. Bendstamine on Wednesday and Rituxan on Thursday. We are so grateful to be receiving his care at The Mayo Clinic.
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