I had a bone marrow biopsy to see if I was at uMRD and could come off my second CLL treatment in 5 years.
The tests were sent to the wrong location and after hours of run around treatment on the phone to get it sorted, gave up.
The the results came back showing progress but not uMRD and in dealing with my disappointment I called my spouse who was angry about not going on a trip she was pushing for despite my feeling ill. She seemed oblivious to my disappointment.
So I did what I always do and headed out to Gods beautiful mountains for healing and restoration of mind, body and soul.
This is the sunset at the end of my excursion.
Awe God is so good!!!!
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skipro
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Hi Skipro. I'm sorry about the disappointment you are feeling 😔. It can be so difficult for those who are on the outside of our disease process .. often not knowing how to process and handle their own feelings of disappointment and loss and this can sometimes manifest as anger or lashing out. I'm so glad that you find peace in nature and creation . I know it is no substitute for support from our partners or family though . Know that you are in my thoughts and prayers and that I am glad to hear that the treatments are working , albeit slower than we would like. Also, I hope you know how much comfort and support you give others through your postings and kindness.
Thank you for your kind response and Thank you for your prayers.
I had a goal to post only the happy things I love in nature and in serving others in my religious circles and the ways I have been uplifted by Jesus. But then I decided it could be hurtful to others if it looked liked everything was just perfect so I started adding my down moments and how the things I did were so refreshing and reviving. So I hope this is the right mix of yes its hard, but look at all the good we have in our lives.
I worked with a therapist for 2 years trying to see how I could be a better spouse and better in communication with my spouse and family. How to be a dad and spouse and "not a doctor". Hard to flip that switch on and off. She told me the same thing, "it's often easier for a spouse to be angry than sad".
As I think about this, I look back at when our son in law was slowly dying from ALS (AKA Lou Gherig disease) under our 24/7 care in our home. There were times my daughter was down right mean to him, so we spent a lot of time late at night with her crying on my shoulder after the 2 am get up to care for him moments. Sometimes she cried and said she couldn't survive any more of this while other times she cried about losing him and feeling guilty for being angry about it.
I had to chuckle when I read your comment. One of my visits to my oncologist I said "you know. I feel very lucky. In everything I've been thru, I've never had any pain or issues ". He responded and said "Well, you had meningo-encephalitis caused by your CLL". I do have many issues related to that (double vision, dizziness, balance issues), but I have always been so positive in my outlook that I never even considered those issues. But, I'd rather not look at them as issues, just more things that I've got to push thru to get healed! It's been just shy of 3 years and I've made such great strides. I can't wait to see how much more progress I can make in another year!
Great news regarding your progress -- it's getting better and better! Sometimes, I think, people get angry when they are helpless and cant seem to help --so maybe that's where your wife is(?,) - but I have to say WOW what a beautiful sunrise or sunset - the sky looks like its on fire....Glory -Glory!
Skipro - It seems to be hard for some to accept we have a diagnosis, that the treatments help but in doing so may cause other issues, and that even though we are improving, we can’t just pretend we don’t have a diagnosis.
I am sorry you have to deal with this with your wife. You don’t deserve that. That you choose to deal with it by skiing and taking amazing photos says a lot about your kindness and acceptance.
I did have a therapist tell me it’s easier to be angry than sad about a spouse that has a chronic terminal disease
But after many long years of this I’ve realized for several years that the way she treats me is far harder to endure than the CLL, 2 different treatments and the pandemic
I’m working with someone to learn how to not be hurt by this.
Not sure how many marriages can’t survive this but I’ve been realizing I can’t survive this much longer.
The thought of divorce is horrific but so is continuing in this situation
Mike - Working with a therapist is so helpful. And it is work, learning to face some realities that we’d much rather were not true. I hope you find a path forward that brings you peace of mind.
I have to say that all the bitter moments have been more than compensated for through the power and love of Christ I've come to cherish in nature and in the quiet moments alone.
I had a spouse that didn't treat me very well long before I was diagnosed with CLL. Three months after my diagnosis, I realized things were not going to change and I left him. 4 1/2 years later. I met someone else and now we are married. He is the love of my life. He is so compassionate, respectful, and loving. We were married less than 2 years when I got meningo-encephalitis. He was such an advocate for my health! I was in the hospital, but he was there every day taking care if me for 5 weeks, from 7 am to 8 pm and driving for an hour each way. A few times he stayed overnight because the nurses weren't always very responsive. I swear I would not be alive today if it were not for him. After I got out of the h ok hospital, I was in a wheelchair and slept for about 20 hours a day. He did everything, cooking, cleaning, gardening, yard work, etc. I tell him everyday how much he means to me. The only thing we "fight" about is "I love him more". He says "he loves me more". 🥴🤣
Go ahead and vent if it helps. It's so frustrating for you. Your photo is beautiful, so glad you have a place of comfort to go to, even if it's only for a short time.
So sorry your wife is unsupportive, my spouse was like this at the start of my journey . Over the years I learned to live around his attitude. However he changed once I was in treatment and became supportive. Have you had a rational conversation with her about how you feel both health and marriage wise ? I do hope you come to a conclusion that allows you to find peace and space to concentrate on your health .
Sending you positive vibes ( and a hug if you’ll accept it )
Of course I will accept a hug. Especially since you have experienced the same attitude from your spouse and understand what it feels like.
It's hard to be rationale with her as she is so irationale when it comes to this topic. She gets angry and says that science and data are all wrong even though she couldn't pass basic algebra for her marriage and family therapy program.
I meet monthly with a support group of 30-40 docs around the world who have CLL. She was so un rational and mean and critical of all the other docs, after the first meeting that I meet with them privately now.
So I am working with a therapist on how to not let her anger interfere with my happiness.
I am thinking of you and praying for you as well. I'm sure the new was somewhat disappointing as was the lack of support. I'm glad you found a way to look at the bright side. I find my peace in nature and in God as well. I want you to know that you are an inspiration to me. I think of you often when I am hiking and think back to your previous posts. I am in treatment and continue to hike and at times I have thought to myself, "If Skipro can do this in the snow, I can surely keep going in the heat." Another time during a difficult hike in the mountains I thought to myself, "Even Skipro had to realize there are times to slow it down and take it easy on yourself. " So continue to post and know that others care about you and are inspired by you. And I am happy the results are showing some progress. As you said, God is good.
You came to a good place to vent. We’ve all been there. Your results are better, just a little slower than expected.
My dad used to tell me that one of my biggest failures was judging people by the way I felt they should respond rather than seeing them for who they actually are. I’ve since tried to look at the whole person and situation. He was right. A good counselor has helped put things in perspective for me.
Continue with your love of nature and God. I sometimes solve most of my issues on hikes with my lab retrievers. They listen and don’t talk back.☺️ Quite often my problems take a back seat and my attitude is refreshed after walks and talks with God and my labs.
Best of luck and keep sharing your thoughts and photos.
Your approach sounds so similar to mine. I've prayed a lot to see her as God see's her.
It took decades for me to see certain abusive people in my life as God see's them and I can say that I can.
I'm trying to do the same with my spouse. And I too am seeing a therapist with a focus now on how to not let the anger of my spouse destroy my peace and happiness and grant her grace in the same way God has granted me grace!
I am going to strive to spend my thoughts in nature on granting that grace rather than being sad and hurt by it.
Some things we can’t change as hard as we try. I went through a divorce after 23 years of marriage. It wasn’t what I wanted but I survived. The therapist pointed out some things I was ignoring. I told him I didn’t want to be single and he pointed out that I was literally living as a single person. 🤔Hmmm, he was correct. Find a good Christian therapist who will walk you through your life. You will find answers to your own happiness.
Like your doctor friend with CLL, I chose to continue on Ibrutinib until it quits working. If I’m uMRD, I don’t care. I care more about enjoying every day than stressing over it. I have no side effects so I will continue.
Look for friends to share things that bring you joy. We’re all here for you.🙏Sally
Sally, thank you. You are right about being married and yet single and maybe being married in this setting is worse than being just single.
So no symptoms on Ibr. ? I've heard the same from a lot of folks on Acala.
I spent 2 years with a Christian therapist to learn better communications skills and how I could change myself to be a better husband and father.
Now I just started with another to learn how to not be so devastated by my spouses' actions and words and how to stop thinking about it.
Right now I've finally gained the courage to tell her I don't want any contact for a while and "that its me not her", until I can get things sorted out.
Mike,You are correct, divorce is horrific. If your wife is willing, getting some Christian marriage counseling would be wise. Since I know your a believer in Jesus.
As for the dissapointing MRD results. I know you have struggled with the side effects. What about dose reduction and shoot for keeping the disease beat down? Its not like there is a cure yet anyway.
Because of my O and V side effects, I asked my Doc for an MRD test. I wanted to know whether the loss of quality of life was worth the price? My thought was this, if the test came pack positive MRD I would reduce Ven to 200mg. As I never had side effects on Ven till reaching 400mg.
The MRD test was about 3 months ago. It did come back negative MRD, so it motivated me to endure more side effects for another 3 months.
But again, if it was positive there is no way I would have continued on the same Ven dosage.
I know other docs with CLL on staff at Mayo who settled on 200 mg and decided to not test for MRD at the EOT. And just live.
I know another doc with CLL who is on Acala with”no side effects” and is not interested in MRD testing, just going with the flow
We’ve been to Christian marriage counseling and when the therapist asked about my feelings I often cried and both she and my wife said I expressed myself beautifully. Then after my wife would get angry and say horrible things to me even after committing to me and the therapist to stop doing that. So after months of this behavior that was so devastating, I stopped going.
My wife is a people pleaser and was best friends with that same therapist and is now doing her internship in marriage counseling under her supervision.
with a prior Christian therapist she made commitments on things and never followed through
So of late I’ve been working hard on forgiveness, bearing my crosses for the sake of family and turning exclusively to Christ for comfort and support.
I’ve lived with two people at two different times and have come to the conclusion all the things we need and don’t need is very hard for them to accommodate and/or understand. And that’s if they’re trying. I’ve also realized it’s healthier for me physically and emotionally to live alone with support from others, this group rates number two definitely and God number one. Sorry for the difficulty you’re facing. Happy you have faith and believe 🙏 The struggles bring us closer to Him. Wishing you only the best. I also take to the beautiful outdoors!
So sorry you are not uMRD but many of us have our CLL under control with our treatment. I am more concerned about what sounds like a somewhat non-supportive spouse. I am sorry about that!
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