As I consider how to live with CLL and Covid with a spouse that is NOT on board with logical approach to me safety, I am wondering how all of you are protecting yourselves with spouses, young or grown children etc.
Questions are do they all wear masks when out of the home or are willing to ask visitors to wear an mask.
Are there Any others of you who live with family members who won’t wear masks out of the home etc .
I am a 64 year old doctor and was diagnosed with CLL 12 years ago.
I underwent 3 rounds of FCR Chemo in early 2018, stopped because of profound neutropenia for another 9 months.
In Fall of 2019 I had a near fatal fungal infection that started in the ear then was invading the inner table of my mastoid nearly breaking through to brain.
2 years later, June 2020 CLL relapsed in the midst of Covid pandemic snd my docs told me that due to the relapse, low IgG, prior treatment with Rituximab I was in the highest risk category for bad outcome and death.
I had no response to 6 vacc doseages. I have had Evusheld.
My wife has basically abandoned me over the rapidly progressing relapsed CLL, and need to be careful due to Covid risks. She seems to be more into denial or irrational behaviors and angry outbursts towards me rather than basic common sense approaches.
so I’m pretty lonely for the past 2 1/2 years and am about to start treatment soon.
Any input on how all you live with CLL and Vovid and family would be so appreciated?
thx
skipro
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skipro
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I also had FCR in 2018 and had to stop after four rounds due to the same affect that you had. I went through four months of different blood products and shots and now still get IVIG due to low blood counts.
My wife was very good about wearing masks and isolating during the first year and a half of COVID, but now she won't wear a mask in public and thinks that it is not that bad anymore. I remind her about my condition, but I think that she is very tired of how life was during the height of the pandemic Our grandkids come over with no masks and want to get right in my face too. I think that it is just a matter of time before I end up getting COVID because of all of this. I feel lucky to have avoided it this long though. I guess that only time will tell and I have to do what I can to protect myself.
I hope that your next round of treatment goes better for you.
I am so sorry you are going through this . The level of anxiety you must feel breaks my heart. Maybe share these stories with your family so they will see that people with compromised immune systems share your feelings . Maybe it will help them to understand .
I was diagnosed with CLL at 31. I am now 53 and I have relapsed 4 times . I have developed hemolytic anemia , thrombocytopenia , Evans syndrome , Graves’ disease regular anemia and post Covid bi lateral pneumonia .
I have been treat with RCVP and Rituxamab and prednisone .
I also did not receive antibodies from the vaccine. Unfortunately there is no literature on the news about leukemia patients not building antibodies with the vaccine so we feel we are safe . I am not a candidate for evushield because I was on oxygen for a year due to the post Covid pneumonia .
I have two children in their early 20’s. For one year they did nothing with the fear or me getting sick . One is away at school but when she comes home she gets tested and makes sure she has not been at risk . The other unfortunately works where he has to take clients out. They do not all take a lot of precautions anymore . For three months when I came home from the hospital I lived in our basement apartment with the fear of being near them since my husband and son were not vaccinated . We have all had Covid and they have now all been vaccinated . I do ask them to shower when ever they come home and put their clothes directly in the wash . I know I can’t ask them to stop their lives for me and yes I am so afraid of getting sick again . I was very luck to bounce back last time . My doctor says I have walked on a mine field 3x and survived .
I am constantly cleaning my home and ask my family to use a separate bathroom . If they are out when the come home they wash their hands and spray anything they have touched .
They are supportive to a point . I always wear my mask and shower whenever I come home .
I guess the little things are all that I can ask right now .
I have . It is not something I practice on a regular basis but when I feel at risk I will . My son has also worn one at times in the past when he has felt under the weather .
My heart goes out to you and your situation. Not to have the support of your spouse is the cruelest thing. I don't have any suggestions that I think would be useful I'm afraid but I'm sending you my support and best wishes
Skipro, I really feel for the anxiety and hurt that I sensed reading your post just now, and I'm so sorry you are dealing with this. I certainly wish I had the right words that you could say to your wife that might allow her to understand this issue more from your point of view than from only her own.
Everyone understands that no one enjoys wearing a mask, no one. It's inconvenient and so annoying at times. We are now several years into Covid, and we can all understand the mask fatigue.
That said, my husband has mask fatigue too, but he still wears a mask everywhere he goes that's indoors, including to work all day. He is not immune compromised and he's fully vaccinated and boosted, but he knows that by not wearing a mask to the various places he goes, that it definitely might increase the chance that I could get Covid, and the unknown repercussions of that are not a risk he's willing to take.
I'm very glad you received Evusheld. Do you think that one of your doctors briefly discussing this issue with her might help at all?
I am a surgeon before I took sabbatical for CLL and Covid and wearing a mask all day for 40 years has never bothered me or any of my associates so I guess I don't understand why so many people are so opposed to masks.
Covid and CLL are a rotten combination not only for us but for our loved ones. It’s been hard for my family to always understand my caution. When Covid first hit (I began to understand the severity of what was to come in Feb 2020), my husband wanted to continue going to the grocery store and have my son and grandson continue going to school.
My daughter began working from home but it took my offering to move out and live by myself for my husband to fully accept our lives we’re going to change.
Fast forward to now and we still order groceries, avoid socializing indoors, etc. My son and daughter-in-law in law have both had Covid but we have avoided it. People visit us from time-to-time. If they’ve traveled by plane, they test upon arrival. We see my children who live here frequently and don’t ask about masking. We just hope for the best.
My grandson who lives with us has been vaccinated for Covid. He goes to school and masks are no longer required. Again, we hope for the best. Our county is improving fortunately but I am still fearful.
I am not attending the Albuquerque Balloon Fiesta this year but my husband, two sons and daughter-in-law are going. The events there draw 100k people per event and people travel from all over the world to attend. Too risky for me and I have attended over 40 times.
Hello Skipro. Sorry to hear you are having a challenging time. My husband has CLL and was treated in 2019. We continue to shield(Month 29 now) with food, medication and everything delivered. We do not meet friends or family or go into public places. We go for a drive and take a flask and sit in nature when we can where there are no people. It is a challenge but it keeps my husband safe. We have both had the vaccines but he has no antibodies. His CLL is active again after 3 years and 3 months in remission so he is back on watch and wait.
Keeping safe is difficult and people cope in varying ways. Your situation must be difficult and I sympathise. I am so grateful for this group
I’m sorry to hear this when you need love and support during this hard time! When I started treatment my partner was a complete bastard I throught I can’t handle you and my treatment do I left him thank god ! Take care
Thx. Today I finally told her, after she made me cry that she was selfish, and I was NOT going to put up with her any more. I'm moving on. Not sure if that means divorce as I am concerned what my kids will think. She is so good at putting on a great public show and looking good and I am just a hard working, shy sort of person. I'm afraid several of my children might never speak to me again.
What is worse, crying everyday as she has been so cruel, or moving on?
There’s a story I learned in Al-Anon that I use quite often to help me make difficult decisions or deal with difficult situations:
A person starts out for a hike on a beautiful mountain trail that meanders across streams, through meadows filled with wildflowers and forests scented with pine. Along the way, the hiker picks up rocks and puts them in a backpack. Some are small and some are quite large. After about an hour, the hiker is no longer able to enjoy the beautiful scenery, hear the babble of the creeks or smell the pine trees. The backpack is just too heavy to enjoy anything.
The hiker decides to get rid of the rocks one by one instead of treasuring them. Once most are gone, the hiker can once again enjoy the trail in all it’s glory.
The moral is that you only need to pick up the rocks that are truly yours. You can leave those that belong to your wife and your children. You have your rocks - your chronic illness, avoiding Covid. There’s no need to carry anyone else’s.
I confided in my elderly mom today. She is the first person I've talked to about all my pain. she said almost the same thing. After 2 1/2 years of all the pain, and sadness, I need to live my life and find happiness elsewhere.
It feels liberating and yet terrifying at the same time.
I am also in a similar situation, abandoned by my husband who accuses me that because of my illness, cll, he cannot live his life! I understand you perfectly! If it helps, you can send a private message!
Awe, yes, when my CLL came back in the beginning of Covid, she told me that going to lunch with friends and her social life were more important than being "isolated with me". I tried to explain that wearing a mask is NOT isolating yet here I am 2 1/2 years later still crying nearly every day.
The lack of support and understanding is hard to hear and comprehend. However, in terms of Covid specifically, and where we are today not two years ago, my husband travels extensively, doesn’t wear a mask but is tested due to work, has had Covid twice and does not wear a mask when out and about generally. I have one child at Uni, one at school. Neither wear masks, both have had Covid, are out and about all the time. They ARE careful around me if they have been with people who they know has Covid/cold etc. I go to work with people who are out all the time. My point is, my family and friends live a normal life. I do too within my own selected boundaries. I am in treatment but haven’t your history of relapse - yet. Life goes on for my family. But they - and people around me - do appreciate my condition. It can’t be easy for you. You won’t necessarily be at significantly more risk if your family go about their normal days as long as they tell you when they feel rough themselves or are mixing with others who do. As you say, a basic common sense approach. I hope it gets better for you.
I'd prefer loneliness to such a spouse. Mine is on board with me. We are the only two people out of maybe four in a town of 20k who still wear a mask everywhere. Not at all shy about it. Reason first.
Thank you. Today I finally had the courage to tell her that I wasn't going to let her continue to hurt me the way she does, and blocked her phone number. Not sure where it will all lead.
These are really tough messages to read about partners blaming you for the situation, especially when, with all the current science we have we still do not know causes of CLL.
I would like to shed a little light or hope. My situation has been well documented in other posts, however I've never mentioned my wife really as she tends to shun publicity.
She has only complained a couple of times, but as unlocking has gradually happened she does the shopping and I would walk to town with her. I'd stay outside in the street while she ducked in and out of the shops. She wore a mask until very recently, even through the summer when she was the only one in the shops with a mask.
As to the complaining, well, it was more a telling off, when I went to see a couple of friends and didnt wear a mask.
We made a trip on a train recently and made a conscious decision not to wear masks, but to take them with us, and put on if we heard anyone coughing. The only person that coughed was me so we gave that a pass!
I really wish I could suggest something to help you but ever since 2012 and my diagnosis my wife has been by my side on living with CLL, right from thd first time she had to explain why she needed flu jabs despite apparently not being old enough to qualify.
I think the only thing she has been uncomfortable with was my decision to do CAR-T earlier this year, and that was driven by fear of the unknown and my hamfisted attempts to explain the discussions I was having with the consultant.
I hope all those who are having a difficult time get some relief soon and find a way to work things out. Wishing you al, all the best, rob
**Updated to correct typos I really must oroof read better**
That is tough, if a person is in denial I think breaking through is a real challenge.
Maybe her position is she just cant come to terms with her life partner having a long erm illness like CLL.
I dont wish to pry, but has she been to any of your CLL consultations? My wife did and I think it maybe helped in the early days. Now she will only go if I say it is an important meeting. I also took her to a few CLL meetings to listen to key presenters and because they are normally a way from where we live I made it an overnight stay with nice meal etc.
Just sending my heartfelt love and support to you, wishing for better understanding and outcomes and blessings for you. So sorry you are going through this. My experience has been a wild ride for the past six years, but I have an understanding family who is willing to go the extra mile for my safety. My heart breaks for you. The only thing I can think of if family/children visit who don't wear masks and it is worth it to you to risk that, is for you to wear a good one during those times. My heart goes out to everyone answering this with your stories, and our community as well. 💖🙏
You know, 5 of my 6 children are happy to wear a mask and always ask me what they can do to make me feel safe. My wife says she is doing what is needed and "has sacrificed so much", yet I think she lives in an alternate reality. Maybe its fear for me, or to make me feel guilty for having CLL and being at risk.
Skipro, it's so difficult to advise, which essentially is what you ask, without knowing you and your family. Even if your grown children are not cautious in their own lives, could you explain to them how you feel and maybe one of them could explain it to your wife. So often circumstances lead to irritation and argument, whereas a calm conversation, sitting down, not passing by on the way to the bathroom or TV, can get results. Don't be afraid to tell your wife and children how you feel 'I’m pretty lonely for the past 2 1/2 years'. Maybe they'll respond, if not I think you have to do whatever is best for you, and that's not an easy decision to make.
Roger, thank you. I do have kids that are respectful but live all over the country so my wife is really the only one around to have a face to face experience with.
It feels like the way she treats me is worse than having relapsed CLL, or living alone.
I have totally sympathy. I was diagnosis CLL stage 4 in Nov 2020, straight to treatment and have been in remission since July 2021. I am fortunate i am 58 , no comorbidities and a full time dad to my 5 and 3 yr olds. I have had covid 3 times hospitalised 2nd with Delta. Since Jan 2022 , i have returned to a full pre covid and pre CLL lifestyle. Living life to the full. BtW all my Covid infections were aquired while shielded, following the rules and wearing FFP3 masks. Since Jan not had an infection of any kind.
I keep reading mortality rates for Covid are anywhere from 35-89% in relapsed CLL patient that received CD 20 inhibitor/chemo in the past. If I knew I had a reasonable chance of surviving, I wouldn't care if I got Covid.
I am 64, hike and snowshoe every day at altitude and climb from 7K-10K feet each time so I think I'm physically fit. I have relapsed CLL, no antibody response, am 64 and have borderline renal insufficiency.
I'm very sorry you are going through this. As for COVID and family, my now 23 year old son was extremely careful for the first two years, but now he is working in an office and he has come home sick, but not with COVID. I'm also traveling for business and wearing masks on planes but not elsewhere. In my case, I am less worried about COVID than not living my life or getting my son launched. (To the best of my knowledge, I haven't gotten COVID and I just got my second series of Evusheld shots and the omicron booster).
But to me, the unsupportive partner can be worse than the disease. I'm meeting with my doctor to talk about next steps today. Given I did O+V+I trial and now am in the phase 1 LP-168 trial (covalent and non-covalent BTKi) which is sort of working but not well enough to suggest that I have another year on this, I'm assuming we will be discussing allo-SCT or less likely CAR-T. The night before my boyfriend decided to hang up on me and texted me to call me when I get my sh*t together which resulted from my saying at 10 pm the night before my bloodwork, CT scans, etc. was not a good time to speak (yet again, for the nth time this week) about succession planning for my business. This is very oversimplified, but you get the point. His consistent reaction to my worst days (and I'm tough, so I don't have many) is to be mean to me which I know is a reaction to his own feelings, but hurts. Sometimes our loved one's support is limited because of their own fears and frustrations.
Wow. I have been told that my wife's reaction is out of fear rather than hate for me and my situation. I've heard that it's easier to be angry at than sad for a loved one with a terminal disease and high risk for dying of Covid?????
That is a different situation and I’m very sorry for you. On another note, I also had Evusheld and tested positive about a mth later. I had nothing more than a runny nose. We are fortunate to have access to Evusheld. Keep masking! 🙏X
I wrote the authors of several major publications on Evusheld in the CLL patients and suprisingly, none of them monitored whether the CLL patients with and without Evusheld wore masks. To my way of thinking, if it works, why bother with a mask, yet all my docs keep saying, wear a mask.
Do you wear a mask when out and about with the Evusheld on board??
I also have a spouse that selfishly does not wear masks in public. Until recently he did the grocery shopping. Once I started shopping myself wearing a 3m n95 mask, he stopped going. He has gone to at least 6 parties with his family whereby nobody wore masks indoors not to mention my sons graduation which was held in a large indoor statium. He goes to all you can eat buffets with friends. My 2 adult sons wear masks in our home when near me because they are in school and work where nobody else wears masks any more. My one son just started working in a hospital as an RN and at some point he will be working with Covid patients. I think that it is inevitable that Covid will be in my household again at some point. When my son caught Delta, I stayed out of the house for two weeks and luckily he stayed in his room and no one else in the house got it. I wear a mask and distance from my husband who also has heath conditions but just doesn’t care. We all eat our meals in separate rooms. My sons are very considerate of me. If I wear a mask in the same room as my husband or leave the room, he gets insulted. I could care less about his hurt feelings because he is being inconsiderate with his behavior. I work from home, don’t see friends in person although I stay in touch by phone calls on a weekly basis. I only go out to grocery shop or for dentist and doctor visits. I didn’t get a strong response from the 5 vaccines and am currently on imbruvica. I have not had Evusheld. This is my normal lifestyle since Covid. I read, take walks, interact with my sons, talk to friends, work from home, and do household choirs to keep busy. I also subscribed to various streaming services to pass some time. I haven’t had a haircut since 2019. I’m not happy with my new normal but will do what I have to do to stay safe. Thank God that there are therapeutics like paxlovid to help if we do catch it. I don’t know why everyone is acting like Covid no longer exists while people are still dying. I sympathize with you that Unfortunately for us, we have spouses that just don’t understand how dangerous it is for us to contract it. Best of luck with your treatment. I wish you better days ahead.
Heartfelt sympathies to you Skipro. I understand your feeling of vulnerability and frustration.
Following FCR treatment ending just as Covid was beginning, I maintained strict precautions for 2 years, going nowhere without an N95 respirator, my wife too, and allowing no-one in the house who hadn't shown two consecutive negative LFTs.
I knew that by end 2021 my post vaccination (x3) antibodies were negligible and my IGs were very low. But Feb 2022 I got Evusheld in a clinical trial and mid 22 my wife and I took a two week holiday abroad. Wearing a N95 for10 hours straight (airport to airport) is a challenge!
Having got away with that, and living with a Ukrainian refugee couple who don't always observe masking protocols, and hosting a neighbour who does likewise, and having family come and go who do the same, things have become a lot more hazardous. I say to myself, what will be: come Covid come Paxlovid. My wife and I still wear the N95s to the shops etc and still dine out al fresco, but really these are token gestures that somehow worked, so far. Maybe the August top-up of Evusheld helped.
Almost 3 years into the pandemic and we have our eldest at Grad school in Edinburgh, two younger teens online schooling through an academy and are in outdoor tennis programs during the day, one close family member attending a college program and living with us. She wears an N95 all day whilst in her program. The family members living with us, all wear masks inside with others. When dining out, we dine outside-- still. Our daughter at grad school does not mask wear on a daily basis but does before she visits us. All inside visitors test before coming into our home. It's tired but thus far has been tolerated without eye rolls.
My husband is tiring but is supportive. Totally reasonable considering the hoops we jump through. Like a previous contributor, we don't have in depth conversations about protocols anymore. I don't double check or ask as I did the first year. My family know that my situation while it improves with Evusheld and the like, it doesn't exactly change. If he chooses to be inside, maskless; he quarantines for a few days. Since my Evusheld bump, he has stated that we are all going to have Covid and our efforts have bought me time. I'm thankful to have treatment options.
I had a PE in March of 2019 and with lung damage and travel plans, my hematologist/oncologist suggested I wear a quality mask for international travel. What a premonition thst was.
Hope you receive the support you need from family or friends. It makes all the difference. I'm sorry to not have any advice to turn your wife's heart on this matter.
I'm so sorry you don't have the emotional support. My husband has CLL and I think I go little over about his protection. I remind him we gave to wear masks in large crowds and now he wont go anywhere if there are crowds because he doesn't want to wear a mask. I remind our friends hosting parties to let us know beforehand if anyone is sick because we wont be able to go and they understand. However I get comments from one of his friends "when are you going to let him breathe". I will keep you in my prayers ❤️
Hi skipro, my husband was very supportive in the beginning but thought this was a political thing. But this past summer he refused to wear a mask anymore. I had no responds from the vaccines due to being on Ibrutnib. In April I received the Evusheld. In July my husband got covid. It was hard to isolate. But 4 days later I tested positive. I was very fortunate. They put me on paxlovid. I only had alot of nasal congestion. No fever or sore throat. My husband on the other hand who is healthy got hit hard. He's a believer now. Hope your wife will come around before she gets hit with it. Wishing you the best. Cindi
Skipro, you need to do what you're comfortable doing. I will not go to large get togethers in a room. If outside, I just keep my distance from people. I wish you the best. Cindi
Hello skipro,
Thank you for trying to help me recently. I want only the best for everyone here & it pains me to read your post.
I have no problem staying in with my husband, family gatherings limited to outdoors only, 3 people, sitting away from us, seperate serving plates, etc. Have not shopped in a store in 2.5 years. Emergency dental appts. only.
My huge concerns are other health conditions & mental health of my husband, 64 years old (as most know from my most recent post). (getting ct scans, teeth, colonosopy, etc).
I am fortunate and I know it & no disrespect nor judgement but I don't understand your wife's thinking and I really hope you have other relatives or friends that are there for you.
I don't know if you know "Jacks" from this forum who has written on here about being through some very tough times as far as a significant other. Just a suggestion that you may want to message privately?
It's difficult enough how your cll affects you.
I know, as a former teacher & developmental specialist for special needs children, that spouses can and do blame one another for things being different about their children. Therapy sometimes helps. Sometimes it ends up being that the use anger as a defense to "cope", and they learn how to change. Unfortunately, not always the case. Not an exact comparison, I know. Also, not an "excuse" for your wife's behavior.
May treatment bring you the next "peak" in life & the health & clarity to move forward with a path to wellness & peace of mind. You deserve it skipro~
Hi Skipro!! Im Sheila. I too have CLL. I started my jouney with CLL several years ago. Were the same age. I too, am in the medical field . Im on the other side working with Abbott, J&J, Bayer etc. I was a nursing student. Have your doctor prescribed Imbruvica to you? Its a phenomenal product that keeps our blood results stable? Its really a breakthrough. Initially, when I was first diagnosed I went directly to MD Anderson. I went through Rituxin therapy and my numbers plummeted. Unfortuneately, they rose some years later so my curent doctor used it again on me. Again, my numbers plummeted. The difference here is that I started Imbruvica immediately!! I take it HS with no side affects! I also started getting momoclonal antobodies, to ensure protection. Ive also received all of the boosters, but honestly, until now with a BA5 orientated booster, I think they have been a waste to all of us! This booster is finally specific to the virus we are all fighting. Skip, we can talk live if needed. I do believe that getting the monoclonal antibodies with the boosters and Imbruvica is a great solution. I dont wear masks anymore unless Im in a clinic or hospital. Thoughts my friend? Sheila
Hi Thank you so much. I didn't respond to prior vaccines I am concerned that BA 5 has almost run its course and the new variants don't seem to be responsive to Evusheld.
Do you know if the new Omicron vaccines help against the new BA4.1 and 2 other new BA r variants.
I have had 6 vaccine dosages with no antibodies. I have had Evusheld and a box of Paxlovid it I were to get covid. I have written the authors of several medical journal articles from around the world as it pertains to Covid, CLL and Evusheld. Interestingly, none of the studies took masks into account when tracking data on the benefits of Evusheld.
So how long have you gone maskless?
Also, with the 3 new BA4.## variants that supposedly completely escape nuetralization by Evusheld, and we don't know if the Omicron boosters work against these new Omicron variants, I not sure what to do next????
Hi Skip!!Ive traveled to Israel for almost 2 weeks without wearing a mask. Im working with Northshore IDN and they believe that the current booster is a close as it needs to be to protect us. Im actually getting the monoclonal antibodies on Friday. Skip, our docs would not recommend either solutions without believing in its power. The main varient currently is still BA5 and its constituents. Its the closest variant weve seen since the beginning of Covid!! Get both shots if possible. If we get Covid we always have the Pfizer which Ive been told clears up the virus very quickly. Skip, you are analyzing the solutions as you should, as a good doc!! I doubt you will have any issues if you comply with the next booster and monoclonal antibodies.
Have you ever done anything that hurt your wife enough that she feels you deserve this treatment that sounds so cold? If so, please make peace with your wife. Usually women do not just abandon their spouses. Please shine a light on your dark places and see whether she is owed a long overdue apology. If she is, and you can see it and say something heartfelt, it may shift things between you.
That said, you may be a great guy who is being deeply wronged. I don't know your wife so I can't weigh in on what you might do to get some help in the form of bringing her back to being on your side, committed to behaviors that will keep both of you safe from covid.
I do know that I finally got sick with Covid last week after 2.5 years of taking good care. Finally, here in Paris, I just went with the crowds and went about without a mask. I had to take Paxlovid, but it helped me, and I am still testing negative, though I will not be able to see my kids and grandchildren for the rest of this visit, and it is sort of a sad and lonely feeling. But, I am doing okay. I am grateful for many things, most especially, my family and friends.
It sounds like you are very very much in a difficult position. There is a Rabbi named Mordechai Finley who will be online tomorrow for Yom Kippur services, and he has a lot of wisdom for humans. You could go to the OhrHatorah website and listen to the service tomorrow, or it starts tonight I think. He does a lot of teaching about forgiveness and how to move through hard things. I also took his class on finding light in the shadow of death when I was first diagnosed with CLL in 2008. Anyway, good luck, I hope you find peace and solace and satisfaction in your marriage.
Yes, 30 + years ago in my medical training I was sleep deprived and she got in the habit of pushing me into a corner when she wanted something and I would yell and swear, feel horrible and apologized profusely over and over again. Despite asking her to not push when I was sleep deprived, I think she realized it was a way to get what ever she wanted.
I decided to get out of medicine or at least into a practice setting without sleep deprivation, she refused to go and said I'd have to move alone. It felt like she didn't want the salary cut getting myself into a better situation would provide.
I have never gotten angry in the past 25 years and have apologized so many times. She is now the one that gets angry, yells, swears and breaks things when I respond to her anger with calm and respect. I think she realizes she can no longer control me like that anymore.
Now she uses Covid guilt to try to get what she wants. I always end up as the guy who is at fault, apologizes profusely for things I did NOT do.
After 2 years of working with a therapist about how to understand her better and communicate better, I feel like things have gotten even worse. I was recently given a lot of stuff to read about gaslighting and narcissism, I feel like her behaviors are very very similar to what I'm studying about it. Yet I hate to use labels.
So I am so so discouraged. I have been depressed and at one point, after she treated me horribly, I spent 5 minutes thinking about driving my car off a cliff to end all the misery. I do struggle with depression, but the thought of suicide has never ever crossed my mind until that event. It's gotten to the point that I wish I could go to bed and not wake up.
Having read this, so much you just shared with all of us, my heart is breaking for you. I hope you have shared what you stated about suicide directly to your therapist. I also can hope that you know it is a permanent solution to a temporary situation. I do not say that lightly nor easily, I have direct experiences.
My father is in his 70's, my mother is a living, breathing "Mommy Dearest" & the stories of abuse would make people's head spin. She also treated my father awful, to the point of another man being under our roof & my father drank his way into darkness. Whether it was denial, habit, fear, combination of all, he stayed for 27 years. Fast forward 23 years and he eventually remarried & does not understand why he never left sooner.
Blaming yourself for stuff that happened 30 years ago does not justify what you are going through, I am not judging, just hoping you love yourself enough to move forward doing what is best for you.
I am not disparaging your wife, just stating some people, even if they are crazy about one another, can be toxic as a couple.
I am not familiar with all topics here on healthunlocked, but am assuming there are mental health sites too, so even if you are seeing a therapist, there may be some benefit to looking into resources and help here.
Peace of heart and mind are wiahed and prayed for you~
So sorry to hear that so many of us lack support from our significant others. It makes taking care of ourselves all the more difficult.
I wish officials would stop saying that the pandemic is over - for some of us seems to be - but there are those of us for whom the vaccines are not a magic solution and possible problems from the virus are very real. People take this “it’s over” message and believe that it applies to everyone. I’m tired of arguing with people because I choose to wear a mask. A mention of the immunocompromised in some of these pronouncements would help.
I read ur story and many of the replies. U are truly caught between the proverbial rock and a hard place. My only question - if she is constantly putting u at risk and has no intention of changing how she lives her life, wouldn’t make sense to move out? You state u have been lonely (and I assume miserable) for 2.5 years. That’s no way to live ur life especially if u are starting new therapy shortly. You need to surround ur self with people who lift u up not drag u down. Just my two cents for what it’s worth.
I am lonely because I have lived alone in a condo in a city 300 miles from home. We used to rent it, but now I live in it. At least I can get out every day into the mountains to hike, snowshoe and occasionally ski depending on the case counts and crowds.
Before Covid 19 people with leukemia did not mask nor did others around them. There were no restrictions on travel beyond the usual. Until my husband’s CMML turned into AML and he was hospitalized , after receiving two rounds of chemo people in the room then had to be masked. Even then when he left the hospital room only he was masked. So I wonder if the new protocol will be for anyone with a compromised immune system will be recommended to mask.
I have been vaccinated, am extremely careful and have had Covid four times. I don’t mask anymore but I still don’t go into any crowds. I see family even those unvaccinated, but no young children. I live alone so I can’t comment on other spouse choices. I would give anything to have him here even if we disagreed about masking. Loneliness sucks.
Thank you. I'm more heartbroken than lonely about the approach my wife has chosen, and despite no education in medicine or infectious disease, which I specialize in, she "knows more about covid than I or anyone because she talked to a social worker who has 2 CLL patients".
She just won't listen to any logic or science or research or any of my fellow doctors who do work for the CLL society.
It's hard to say if she just hates me, or thinks she is smarter than the rest of the world, or just acting out of panic???
Very sorry about your situation. I empathize with you. Our spouses are in denial. They don't want to deal with it. My husband doesn't wear a mask either. It was hard for him because he had a pair of hearing aids and asthma. I help him with all his health issues chronic vertigo, high blood pressure, going blind in one eye ect. Nursed him to health when he was septic. It is endless. I think he is spoiled. He doesn't want to deal with Covid anymore or my restrictions because of treatment or Cll. He gets angry taking it out on me however Covid isn't my fault. I was even thinking maybe he was depressed.
Our hospitals aren't overflowing and we don't know anyone with Covid so out of sight out of mind. Even when our relatives or friends talk about cases in their family the light bulb doesn't go on. You talk right to him and his face is blank, it doesn't sink in. People are tired of it all however it is our way of life. We have adapted to our Cll issues.
So all I can do is ignore his attitude and take care of myself. My kids are considerate even taking covid tests before entering the house while my husband mocked the whole thing.
We went to the ocean today and there were some people wearing masks, one even had nitrile gloves on while hiking.
I am lucky and can live a pretty normal life physically while taking Alacabrutinib however, I am cautious about exposure to bacteria and Covid. My IgG 540, Igm 9 and Iga 60. I have to have a couple of implants due to a failed new bridge and I am very worried about infection. I have no antibodies from the vaccines and am very lucky to have gotten the Evusheld on board.
Maybe she has depression from the pandemic. I hope she comes around to showing some compassion during your time of need. I am sure you have helped her when she was vulnerable.
You certainly found the right place to share. You are not alone. Hope your treatment helps you get back on your feet. The best of luck to you.
Skipro, I am amazed by all the supportive comments that you have received. It is so sad to read about your pain again (I remember you sharing less detail previously). I remember because I also have an unsupportive spouse regarding my CLL, and add to that, COVID. Plus he does not take care of himself which is not fair to me. Plus he does NOTHING to help around the house or other life necessities. It is a lonely life for me too, living with him. A difficult situation to be sure, but now I know from your other commenters, that we are not alone.
I have wondered if I were to pair up with another CLLer, would life be easier because the partner would "get it" and fundamentally understand.
If it's a pollution free place like Routt County, Colorado, count me in...I am looking at going there in the next 5 years. Pollution and crime have become so so bad where I am staying right now.
The emotional pain and suffering that accompanies ANY cancer or severe disease diagnosis cannot be under estimated. These conditions do not affect only the afflicted, but the whole family as well. Remember the old movie, "Its a Wonderful Life"? My husband has had 2 bouts of a different cancer, skin cancer, and is now being treated for CLL. While he bears the brunt of the pain and treatment, we have ALL been affected. We just sent our kids on our first family vacation in 3 years without us, since I felt starting CLL treatment and recovery be our priority. He was willing to travel, risk Covid, and go, but I said no.
We both had unrealistic expectations, that after a couple of months of treatment, he would feel close to his old self again. As his body adjusts to his V +O treatment, he faces infection, edema, and mass fatigue.
Life is a journey, and traveling over these bumps in the road with a loved one is so much better than facing all of this alone. This group has been a Godsend to both of us, helping us feel like we are part of a community rather than a lonely victim of unforeseen circumstances.
I foster kittens and exercise in my spare time, which bring us both much love and entertainment when things get grim.
There was a time, when a CLL diagnosis meant an untimely demise, but now we are all blessed with treatments that will possibly extend lifetimes and be the bridge to a cure. I find that miraculous.
We are NOT our afflictions. Whether we suffer from a disease, or the anxiety and fear that accompanies one, our hopes and dreams don't diminish. My wish is that you find a trusted friend or partner that understands your journey and will join you on your road to recovery, sharing the bright days filled with health and joy that follow.
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I am concerned that BA 5 has almost run its course and the new variants don't seem to be responsive to Evusheld. 
COVID-19 among fit patients with CLL treated with venetoclax-based combinations
Dr. Byrd on COVID-19
CLL Society’s COVID-19 Update for the Week of November 7th, 2022
Regeneron treatment for CLL people with early Covid symptoms 
