How Blood Cancer Changed Me

By Diana B.

1 min read

My diagnosis of MDS was not a complete shock to me. As a retired RN I understand with the symptoms I was experiencing I either had MDS or multiple myeloma. I, of course, had normal anxiety about my subtype which decreased once I found out I had Del5q. I had to alter some lifestyle changes due to fatigue, weakness, etc., until I was placed on Revlimid. I had been transfusion-dependent prior so I was able to return to reasonably normal life activity.

I had to deal with side effects of drugs which did create issues with GI distress and change in the taste of many foods. Overall I was doing well. Now my life has changed dramatically again as I now have gene mutations that are significant - I'm having to alter my lifestyle as again my counts are again decreasing- anemia has returned, my immune system is very low, my energy level has dropped dramatically, limitations on contact with others as to large crowds( missed some concerts I wanted to attend) and overall naps are frequent again.

I am awaiting clinical trial admittance so I'm not sure what I'll be facing with those drugs. My family, especially my great nieces and great nephews, is my greatest joy, along with my church family. Happy to be able to appreciate every day I'm given.

-Diana Blair

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Susan Gonsalves Moderator & Contributor
I'm sending you my support and best wishes for a positive outcome. I'm glad you have a supportive family to help you as well. Take care. Susan (Blood-Cancer.com Team member)
Connie Connely Contributor
I was diagnosed with MDS (5q deletion) in 2017. So glad to hear you have a supportive family, and good luck with your clinical trial!
Dennis Golden Moderator
The importance of family and church really come into focus when dealing with cancer. So glad to hear your family is supportive as you consider entering a clinical trial . Best of luck as you enter this next phase of treatments. Dennis (Blood-Cancer.com TEAM)
Daniel Malito Moderator
As a retired RN I'm sure you went in with a few expectations and things you thought would happen that turned out not to be true! Cancer is such an unpredictable and bizarre illness that some of the things I was sure would happen didn't occur, and things I never even imagine ended up becoming regular occurrences! I'd love to hear some of the things that you were surprised by! Hopefully today is a low pain day. Keep on keepin' on, DPM
Amanda Brunson Moderator & Contributor
I’m so grateful you have support and church. 🙏🏾🫶🏾The Cword has a bad habit of flipping 🌎 worlds upside down. How are you feeling lately?🫂🧡🐼 I’m curious about the same question as <inline-mention username="Daniel Malito" user-id="3641972"/> too. I would also love to hear some of the things that have surprised you as well. It’s definitely a different perspective when you know the medical side and the patient side as well.♥️
Yolanda Brunson-Sarrabo Moderator & Contributor
Sending positive virtual vibes. I hope the not-so-good days turn better and tolerable. Wishing you the very best!
Diana B. Member
To all who commented to my earlier post. I've been on clinical trial since October and it's ben a tough road. Been in hospital x2 and now on Cycle 3( finished 5 day oral chemo drugs on 12th). Chemo has been very hard due to effects of drugs themselves. At this point had repeat bone marrow biopsy and awaiting final results( initial report didn't give me a lot of encouragement). I'm having to remind myself that 4-5 cycles may be indicator for improvement. So I'm just staying present each day.. Diana B
1. CommunityMember2224ef Member
 <inline-mention username="Ronni Gordon" user-id="3651931"/> I am grateful to you for mentioning the meditation app. I have a hard time “doing nothing” but sitting, even knowing all the benefits. I could likely go five minutes, though, and I love that you can chose one that fits your needs.
2. Dennis Golden Moderator
 What helped me during active treatment and after was signing up for an on line music subscription combined with a good set of noise canceling headphones. While there are many resources to select from I opted for Apple music. I am sure others will do as well. When I was trying to mediate or trying to "get a way from the noise that is cancer" I always had better success with all instrumental immersion vs voice guided meditations. I must confess that a few years ago I use to lead guided meditation classes but even then a hint of background support was helpful - be it the sounds of water, singing bowels or selected Vangelis offerings. In the end it is always always best to do what works for you . Dennis <a href='https://blood-cancer.com' target='_blank'>Blood-Cancer.com</a> TEAM)
Leya Elijah-Lyle Moderator & Contributor
<inline-mention username="Diana B." user-id="4226135"/> I certainly understand the changes that come with the treatments and meds. It's often far worse than the disease itself. I pray all goes well with your clinical trial! We are all here for you. ((hugs))
CommunityMemberfb1499 Member
I have del/5q too. After 5 years of red blood cell count of 9, I dropped to 6 and I am now Revlimid and I am up to 10.9. I had to close my business because I was concerned about the potential of a stroke. How long did it take from when you went on Revlimid for your blood count to go down again. My doctor told me that the odds are that I have 2 years to live. I am trying to determine if I have more time.
1. Yolanda Brunson-Sarrabo Moderator & Contributor
 <inline-mention username="CommunityMemberfb1499" user-id="9799875"/> Sometimes there are no easy answers or answers at all when the prognosis looks bleak. It's important to remember to live, love, and laugh despite whatever, and that is the good with the bad. Wishing you all the very best! Yolanda ( Team Member)