• Stage 4 indolent B cell Non Hodgkins Lymphoma in quarantine since February.

    Asked by TanjaTuna on Thursday, October 29, 2020

    Stage 4 indolent B cell Non Hodgkins Lymphoma in quarantine since February.

    Anyone else? Early in the pandemic we had a scare which turned out to be just my NHL B-symptoms. ANywho I was strongly advised by the 2 Dr's who cared for me, to go home and stay home because of my risk of severe covid-19. My primary care won't even see me or my husband in his/her office. We do a tele-visit once a month. I was diagnosed 10 years ago and have done Rituxan alone multiple time w/maintenance. I have a very long and colorful history of cytokine release syndrome during infusions which required hospitalization during every infusion. The infusion was slowed and given over 72 hours with dexamethasone and Benedryl.

    I'm beginning to feel like a freak and honestly other than a few close family members people don't understand and think I'm over reacting. Explaining cytokine release syndrome/Covid-19 to the average human being just makes me seem more paranoid. I thought someone here might be in the same boat.

    4 Answers from the Community

    4 answers
    • LiveWithCancer's Avatar

      My husband had a stroke several months ago. He has diabetes and has had quadruple bypass surgery and has congestive heart failure. I have stage IV lung cancer. We're both high-risk. Our doctors have only seen us via tele-health though I have had to go in for scans, port flushes and he was in the hospital a week or so after his stroke. We had to have home health care workers in and out of the house for weeks taking care of him after he came home.

      He pretty much has, but I haven't become a complete hermit and as of late have gotten out more and more because I'm so sick of being inside. Still we've been careful during this pandemic. To come down with the disease could be deadly for either of us though I do believe they are much smarter now than they were a few months back about how to treat the disease. Nevertheless, people are still dying and we are in the high risk group. It makes sense to be careful. ...

      On the flip side of that, when I was diagnosed with lung cancer (8 years ago today!!!), I determined that I wasn't going to give up and die ... I planned to live life as completely and as fully as I could. I am now trying to balance being smart and safe (as safe as you can be anyway) and still living life.

      To anyone who thinks you are overreacting, let them walk in your shoes for awhile and let them see how they would react. Don't concern yourself with them - their opinions don't matter.

      9 months ago
    • JaneA's Avatar

      There are quite a few of us who are being ultra-cautious. I am a Stage IV rectal cancer survivor. My hubby is 12 years old than me and is borderline diabetic and uses a cane to walk. I order groceries online for pick-up to help protect us both. I've gone in for two port flushes and recent scans. I am having cataract surgeries in November. I have to be legal to drive. My eye doctor and I felt that with winter coming, there is a risk of elective surgeries being cancelled again so we deemed that November was the time to get these done. I just got back from the hospital from having my COVID test before surgery.

      You are not over-reacting. People on the outside don't understand our issues. Breathe some deep breaths and relax.

      9 months ago
    • JustForToday's Avatar

      Friends and neighbors have actually told me I hurt their feelings when I chose to decline their invitations because I am being super cautious while Covid-19 is out of control. Fortunately, I remember these same people not understanding when I told them I could not have visitors due to non-existent immune system while I was getting chemo. I just try to explain as simply as I can. They chose to socialize with me again when chemo was over. I know they care about me and hope they will want to socialze with me again after Covid is under control.

      9 months ago
    • legaljen1969's Avatar

      @TanjaTuna- The important part is that you take care of yourself. It would be nice if those in your life would just be supportive and understanding when you tell them you have to be extra careful, but sometimes people just don't pay attention.
      Unfortunately, I think the fact that COVID has been so politicized has really increased the insensitivity of others. It has decreased acceptance of people who need to take extra care of themselves to remain well. It has increased the eyerolls and the "oh you're just being a hypochondriac." Nope. There are so many virtual platforms through which we can communicate and share. There is so much social media. I know we are all getting a little stir crazy these days and wanting life "back to normal." I don't think any of us anticipated this would be such a long lasting thing. We all thought we would quarantine for a few weeks, "flatten the curve" and go back to life as normal.
      I did find it helpful for some of my more resistant friends and family to share articles on Facebook or other social media platforms with links to things I "found interesting." In other words "Read this people. I am not crazy." It allowed people to read and digest what I had been telling them. It made it a little more clinical and less personal when they could read about the topic generally.
      I invited people to webinars of things that had to do with COVID and cancer. Maybe that would be a way to get the message out about your CRS.
      I hope you find yourself in a more peaceful situation.

      9 months ago

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