Staying strong and facing an uncertain /certain future

Hi Lori! Thank you for checking on us!
Today, and lately, we have Mr. Ray of Sunshine 🌞 . He had his third round and it went well. He did get a little, no alot, rambunctious a few days afterwards and spent a couple of days putting in railroad tie stairs to my work shop. I call it the Chemo Steps. You had said previously something about him learning....well, this time he did. While he did take breaks, etc . it was just too much. I'm grateful that it didn't warrant a trip to the emergency room, but it was close. He has now turned his pick axe, shovel, and rake in for easier projects. And he did it with a good attitude! You are right again - it's starting to level out and we're both getting a better feel for all of this. I'm learning to go with the flow and not panic (as much🥴) and Val is giving his body more grace and his mind more acceptance of his treatment and it slowing him down. His last two appointments, prior to treatment, have been with a PA at Mayo in the oncology/hematology dept. Val and he just clicked and that has helped immensely. He has his "mid-way " Petscan on the first of May. Hoping that he doesn't light up like a Christmas Tree like his two previous scans🎄🙏🤗
How are you? Hoping spring has sprung in your neck of the woods!! Big hug headed your way💓💓

Oh boy, well, it’s good to hear that your husband is learning to pace him self and listen to his body! I swear, that is still one of the hardest lessons to heed! But chemo really saps a person from many perspectives so, while it’s great to keep up normal activities, it has to be with reduced intensity and not quite as much gusto! 😂 He’s doing great though!!

I was on a roll this past week myself…finally, I’m able to do some limited gardening again! But with gloves and a mask. Well, it was in the 80s here this past week, breezy with low humidity so I thought I’d be good to go. Nope…I could not handle the heat under exertion like that and my great gardening plans were shortlived. My husband, who loathes gardening, was called into action with the spade and got the digging done for me. Now I can take over again. The recognition and resignation that I can no longer do what I used to is tough to accept!

I’m happy to hear that life is leveling out for both of you and becoming more predictable. It’s a learning curve for sure. Just keep in mind, it’s just for now…things should improve ahead and the way he’s handling this is very encouraging. We’ll keep our fingers crossed for the Petscan not lighting up like a Christmas tree. I actually made some incomprehensible snort at your comment! We’ll hope for ‘lights’ out…

I’m doing well and actually heading to the Mother Ship in Rochster in a few days for routine followup. Not anticipating anything amiss. I’m really healthy unless they tell me otherwise! Ha! Looking forward to the report saying. “Unremarkable”. ☺️ Hugs for the both of you!

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Do you think you and your spouse would try something like this?

Hi Lori and Good Morning! Checking on you after your trip to the Mother Ship. Hoping that all systems are go and your test results were excellent!

Mr. Ray of Sunshine is good. ☀️☀️☀️

Good morning, Sheri! Well, now I’m feeling the warm fuzzies! Thank you for checking in with me.
The visit to the Mother Ship in Rochester was “Unremarkable”. Which, in the medical world, is the best word we can hear in a followup appt. Hah, not that I’m unremarkable. 😂 My poor doctor will remember me forever…I give him a run for his money. 😂
But in the leukemia/bone marrow transplant world, I’m in exceptional health. Yessss. Better living through chemistry! That’s for anyone who dreads the Chemo word! It works and buys us time!

The MRI showed my spinal cord has fully recovered from the demyelination of a few years ago. I still have electrical aftershocks, I call them. So I have an neuro consult coming up in June…bzzzzzt. Haha. I’m like an old classic car whose wiring has a short somewhere. We need to figure that out.

The highlight of the trip was being able to meet personally with two of my fellow Connect Mentors. We’re all patients at Mayo Rochester and our planets happen to align for followup appts, so we’d all be there together!! The breaks between appts allowed time for us to have a brief but meaningful and friendship bonding meeting!

I’m thrilled to hear Mr Sunshine is beaming his positive energy again! Helps when life returns to a level of normalcy. What are you up to?

Hi there! I'm so happy to hear that you are Unremarkable!!! What a treat to meet your Mentor friends. Hugs abound and are so good for the soul.

I have been working in our yard on the landscaping. I'm just a box of rocks. Since we moved here two and a half years ago I have put down about 120 plus tons of rip rap rock. I know each rock by name🙄 now I'm working on a small river for drainage. The weather has been awesome so its been nice.

Was the demyelination caused from your bone marrow transplant? Will you travel back to the Mother Ship? How far away is Rochester from you? OK, I've exceeded my question allowance for tonight 🤗
Val has his mid-way PetCT on Monday and Roind 4 Wednesday and Thursday. I hope that he is also Unremarkable 💓💓

Have a great weekend!

You’re taking Rock Collecting to the extreme! 😂 Landscaping projects are rewarding, with greenery or rocks. Fun to see what you can accomplish. I get it…my bestie moved to New Mexico and has been landscaping her yard with rocks…meaning she’s moving them from one part of the yard to another. When she lived in our hometown in east central Wisconsin, her yard was glorious and an annual garden walk entrant. So I worried when she moved to the arid desert that she’d miss signs of life! Haha. She’s resilient and living among rocks, hardpan and 🌵.

To your question, yes, the demyelination was a side effect my stem cell transplant from what’s called GVHD or graft vs host disease. When someone receives a solid organ transplant such as liver, heart, lung, they take anti-rejection meds for life so that the organ isn’t rejected by their immune system because it is a foreign element.
In a stem fell transplant, the new immune system looks at the body as the invader! But the advantage is, at some point usually within 6 + months or sometimes much longer, the immune system and body start playing nice together. But before that happens, if anything looks ‘suspicious’ the immune system will do what it’s supposed to…it will seek and destroy offenders.
As we go off our meds, the gvhd can start to surface. It’s generally controlled wonderfully with steroids, like stamping out small fires until the threat disappears.
For some reason, my new cells (from a 20 year old male donor), about 6 months post-transplant, decided they’d be a gang of thugs and start a turf war along my spinal cord, wreaking all kinds of havoc. I eventually lost feeling from waist to toes. A trip to the Mother Ship had me up and walking again within a week. But there were months of treatment with rituximab and Solumedrol. Anyway, it was really good news to see there’s nothing abnormal anymore on my cord and the thugs have found other menial jobs.
I did have some weird symptoms (still do) that arose in a couple months and that prompted the latest MRI. The good news is that it’s not GVHD. So I’ll go back in early June for a neuro consult. I’ve never been this age before, sooo, it could all be age related! I feel 24 inside but my 69 year old body didn’t get the memo. We needed to rule out that my little thugs weren’t out looking for trouble again that isn’t there! They are doing an amazing job now of keeping me very healthy. We’ve reached an amicable accord. ☺️

I’ll keep Val in my thoughts Monday for only good news on the PETscan! He’s an old pro now with the meds for round 4…doesn’t make it easier but at least it’s predictable.
He’ll never be unremarkable!! 😂 But we do hope we see that word on his tests!
Hugs to both…💗

Hi @valandsheri! Thought it was time to check in on you two! How’s Mr Ray of Sunshine? ☺️

Lori!!! How in the world are you? I pm'd you last month but hadn't heard back from you so it is great to have you checking on us!

Well - this has been an interesting journey. I'm not sure that interesting is the word, but you understand 🙂 Mr. Ray of Sunshine is doing very well. I'll catch you up since it's been a bit and I've lost track of where we left off. He completed 4 rounds of BR (it's come to the point where I understand and know some of the "terminology") and he had been seeing his PA during those appointments. For Round 5 he was scheduled to see his Hematologist for the first time since beginning treatment. That was an eye-opening appointment. She spent a full hour with him (I was on speaker phone sitting outside in the parking lot with our dog as it was too hot to leave him in the car - I know, I know - leave him at home. But he's the baby and we just can't do it LOL) So - two things happened at that appointment that were a first - his neutrophils dropped too low for chemo that day, but in addition, because he had completed four rounds and his Pet Scan was a Deaville 1 with no evidence of disease it was decided that he did not have to have the last two rounds of the Bendustamine/Rituxan combination. Basically, he could be done with chemotherapy. I do remember you saying that finishing the entire run was the suspenders, etc. but his doctor felt strongly that due to some trials that had been done regarding Follicular Lymphoma she felt stopping at 4 rounds was absolutely acceptable. A very strange feeling indeed. Then came the conversation about staying on Rituxan for two years with an infusion every two months. To be followed up at his next appointment with her on the 2nd of August. So that day Val received Rituxan only and Neulasta. I was told that they call Neulasta NASTY LASTA. It hit him harder than either the chemo or the immunotherapy. It kicked his butt. He will have his next Pet Scan on the 30th and hoping and praying for another "lights out" scan.

I feel like I have learned so much going through this, as has Val. His doctor is very thorough, very caring, and very intuitive. I am so grateful for her and the Mayo Clinic. This last appointment really made it sink in that the type of cancer he has is chronic - it is not curable, unless it transforms into a different more aggressive type, and that is always possible. Val is such a warrior, but he is very realistic and while not being a defeatist, he knows that there is a good possibility that the cancer will return, but he feels that as long as he can go back into treatment all is well. The doctor assured him that if he does come out of remission, he can definitely start treatment again, and that things change so quickly in the world of medicine that there are other treatments emerging all the time. Many people stay in remission for many years so that's what we are hoping for, but truly understanding this disease makes us calmer and not scared, like in the beginning.

With all of that said Mr. Ray of Sunshine is taking it slow, but doing more each day. Getting stronger and trying to build up his stamina. Mr. Crabby Pants has left the building!!!

How are you????? Here comes a hug right at you!

Hey there! I am flummoxed. Don’t know how I missed your private message because I’m really judicious about checking my mail. I’m so sorry I didn’t answer. But after digging back, by golly, there’s you letter! 🙃

I’m pleased and excited to hear that Val was able to stop his treatments 2 cycles early! That’s a really positive sign! Those bimonthly Rituximab infusions will be good for keeping things ‘calm’. I remember listening to 3 doctors in my hospital room talking about Rituximab and a little ‘tongue in cheek’ humor about how it should just be in the water supply because of its anti-inflammatory properties.
It certainly worked for me with my spinal cord inflammation. People bash big pharma, but I have learned to respect and benefit from all the research that’s brought us these amazing treatments.
Wow, this is really good news for the both of you…life can now return to normal! Ya know, we all have that lingering thought of cancer making a return but we can’t ever let that stop us from moving forward. If it happens, then we tackle that head on too. But worrying about something that may never happen again just robs us of precious quality time. ☺️
If Val ever needs Neulasta again, make sure he takes Claritin antihistamine capsules with it for 7 days starting with the day of the shot! That helps with the bone pain! (Sure, now I tell you…giggle).
I’m coming up on my 4 ReBirthday in a couple of days. It’s now hard to believe all the medical drama I endured 4 years ago to get to this point today. I feel like nothing ever happened. I even spent the entire day outside doing yard work and gardening the other day. Hadn’t been able to do that for several years…still wear a mask playing with the dirt but it was such a productive and natural day for me from my ‘former’ life. So to be able to return to that type of activity was almost emotionally overwhelming! I actually got a little misty eyed thinking how ‘normal’ it felt!
How’s your rock gardening coming along? You have to be looking pretty buff hauling and placing all those stones! Say Hi to Mr Sunshine and give him my best! ☺️