Myeloma Mom: Keeping My Blood To Myself
I realized something weird the other day: I really miss donating blood.
Of all of the things multiple myeloma has taken from me, I’d never really considered this one: I can’t be a blood donor ever again.
And that kind of stinks.
I take Revlimid (lenalidomide), which means – understandably – that I’m forbidden from sharing my blood with others. My blood is poisonous and dangerous and nobody wants it.
If you’ve ever taken Revlimid, you’ve taken the monthly phone survey that’s required before you can get your drugs. Question Two is “Have you donated to a blood bank while taking Revlimid? Press one for ‘yes’, two for ‘no’, or three for ‘don’t know.’”
An aside: Why is there a “don’t know” option for these questions? “Hmm. The other day, I was walking down the street, minding my own business, when everything went black. When I awoke, I had a bandage on my arm and an elderly volunteer was offering me orange juice. Was I kidnapped and forced to donate blood against my will? I don’t know! I DON’T KNOW! HOW WILL I EXPLAIN THIS TO THE REVLIMID SURVEY? Oh, wait. I’ll pick option three! Thank goodness!”
The question that really makes me wonder about the “don’t know” option is, “Have you had your womb or uterus surgically removed?”
Really? I can’t believe this is something any woman would be the least bit unsure about.
I joke now, but I never joke around while taking the Revlimid survey. I know it’s important, plus the woman giving the survey sounds a little scary. She means business. “Have I shared my Revlimid with anyone? No, ma’am! Of course not ma’am! That question is not the least bit ridiculous!”
And so, because I’m scared of the Revlimid Survey Lady, and because I am an incredibly responsible human being, I do not donate blood.
And I just realized I miss it.
Before being diagnosed with myeloma, I donated blood all the time. Initially, I was scared, but I soon embraced the good feeling that I was doing something helpful for a stranger I’d never meet.
Plus, I loved that medical professionals were telling me – no, commanding me – to eat cookies and lie around for a while. That was awesome.
I’d return home from the blood drive feeling happy about my good deed, but feeling too tired and weak to do anything productive. I’d get to spend the rest of the day on the couch, drinking root beer floats and watching Judy Garland-Mickey Rooney movies on Turner Classic.
Saving lives is hard, you know.
My daughter’s school often hosts blood drives, and any student who recruits a parent to donate gets a “non-uniform day.” She goes to a Catholic school, so this is a big deal. I’m never able to help her out, and the drives are usually on a day that my husband has to work late, so she’s usually headed back to school in her plaid skirt while everyone else is wearing jeans and hoodies. It’s sad.
Last week, however, my husband was able to make it to the blood drive. When he came home, he shuffled in the door, pale and weak, and told us a very graphic story about how the needle fell out of his arm at the end and sprayed his blood all over the place.
Oh my gosh, I was so jealous.
And so I grilled him for more information: What were the volunteers like? How many people were there? What kinds of cookies did they offer? Was there pop or orange juice? Or both?
Turns out, there was pop and orange juice. And – wait for this – smoothies.
Smoothies, people.
I will never get a blood drive smoothie, although my husband did bring me a package of blood drive Nutter Butters. He’s a good man.
But I know it’s not really about the smoothies. When you’re a blood donor, you’re a strong, healthy person who is able to help other people by contributing a strong, healthy part of your body. My blood is no longer strong and healthy and probably never will be again. And if my myeloma ever goes kablooey, I’m probably going to need some of that donated blood.
The blood-donation ban is just another reminder that I’m forever sick instead of strong and healthy, and I don’t like being reminded of that.
Pass the Nutter Butters.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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Hey Karen,
I've lamented not being able to donate blood as well. But, correct me if I'm wrong. Just having any stage of mm (smoldering,symptomatic, etc) will disqualify one from donating blood, except for scientific research purposes. So, being on Revlimid isn't the only spoiler here.
Hey Karen. You're my hero! I was always reluctant to give blood. And thus, never did. When I found out I couldn't, I'll have to admit, I was relieved.
Your story is great, and you can always know that, "Once upon a time, I did that good thing."
Julia Munson
Those with multiple myeloma are ineligible to donate blood even when in remission, as are others with hematological cancers.
Sorry.
i, too, am very sad I am no longer able to donate. I continue to struggle with this, four years later.
I had been a blood donor for over 25 years when I was diagnosed with MM. In fact, it was going into donate that led me to find I had MM. I was not allowed to donate because my iron levels were too low. Two months later, after seeing my PCP and then being referred to an oncologist, I found out I had cancer. For the past four years, every time the request comes around at work to donate or I see the list of donors in the paper, I wish I could still donate.
"Pss. Hey buddy, I've got some good Rev here. Just $1000 a capsule." Each month when I take that silly survey, I imagine myself saying that to someone while I'm walking down the street in NYC on my way back home from Memorial Sloan Kettering after getting my monthly fix, I mean dose, of Revlimid.
Seriously, I miss being able to donate blood too. And when receiving red blood cells and platelets after my SCT, I realized what it was like to be on the receiving end of the transaction instead of the giving end. I really appreciate all those who give!
Mike
What a well written column, Karen! We with cancer are not the only ones who cannot donate. If you have travelled to certain countries on a list, have had certain other diseases such as hepatitis I think, or other exclusions, one is not allowed. We are interviewed by a nurse here, and also, if you feel pressured into donating, such as at a blood drive, but do not actually have the criteria to donate, you can put a confidential sticker on your form to notify the staff that you don't want your blood used after it is donated! I think that at blood donation drives, some people do feel pressured to donate.
I used to donate blood, usually with a friend. We felt it was something that we could do to help the health care system. Now the shoe is on the other foot, and although I haven't needed any blood products yet, I know that it is a very good system that is there for us if we need it! There is an irony for me, though, since I thought my blood was very healthy. Now, if I had been a plasma donor, instead of a 'whole blood' donor, my protein levels would have been tested, and my myeloma diagnosed sooner than it was.
I was on their phone list and still kept getting requests often to donate blood, but after I told them I have a blood cancer, they finally quit calling.
Thanks to all of you that used to be frequent blood donors! If you miss donating, you could volunteer to be the juice and cookie passer-outer:)
My husband is the myeloma patient. The Revlimid survey people always seem to call when he's not home and they have me take the survey for him. I always have to smile a little when they ask me if he is having sex with anyone who could become pregnant. Someday I won't be able to hold back from saying, "I sure hope not!"
I understand completely. One day, out of the blue, I felt like I should start donating blood. I was always too low in iron, so they rejected me. Many years before that, I had my cheek swabbed so I could be a bone marrow donor. I was really proud of the fact that maybe one day I would really be able to help someone in need. It was a sad day when I was diagnosed with smoldering myeloma and had to take myself off the bone marrow registry. Now it might be me that someday needs someone's stem cells. Just a little twist of fate.
There is a joy in giving, and a joy in receiving.
When we are diagnosed with MM or any long term condition, we probably have to change our options.
If there is something we enjoyed giving but no longer can, we can either be upset about it or, in the words of the song, let it go!
Even if we are very weak physically, we can always give gratitude, appreciation and validation to those around us. Gratitude is a great feeling, and thinking of all we have to be grateful for puts us in a good place.
I have donated blood in the past. Also, I consider my self a organ donor in waiting. Does anybody know if mm eliminates us from that privilege as well?
I used to donate blood and then, twice in a row, my iron levels were too low and I could not donate. I have not tried since then because I am permanently anemic. I was also listed on an organ donor registry. I have told my children for at least 30 years that I wanted my organs donated. No can do now. As a last resort, I filled out a form to donate my body to our local medical school. I think budding doctors need to work on real bodies, not dummies. At that point, I will not even know about it.
Marvin, I do not think you can be an organ donor because mm invades the whole body through our blood. I would not want to think I gave mm to anyone else through an organ.
I was a regular donor too before the myeloma diagnosis. I remember the blood bank sending me some kind of a pin or other trinket for donating several gallons. I have not had to use any blood products lately, but three years ago from the time I was diagnosed to the completion of my SCT I received around 5 or 6 pints of blood during transfusions. I think my doctors preferred to transfuse to improve blood numbers instead of using drugs like EPO or Neupogen. I never thought of myself as being a user of donated blood, and I was glad I had donated so much earlier to put some into the system before I became a user. I appreciate the importance of having a blood supply and those who regularly donate to maintain it.
I never realized how important a blood donor was until I needed blood cells and platelets after my SCT. I was always afraid to donate. Now my husband gives back that which I have taken. Thanks to all who donate -- where would we be without you?
Dear Karen,
Great, well-written story. Many years before I was diagnosed with MM, I donated blood a few times, but each time I would pass out or nearly pass out. They did offer cookies, donuts, and juice, but that didn't seem to solve the problem. On the last occasion, the blood donor clinic suggested that perhaps I shouldn't return.
Thank you. About two years before my MM diagnosis, I heard a woman from the blood collection center explain the need for O-negative blood. I started giving because mine is O-negative. After diagnosis, I had to stop.
I too am sad that I can no longer donate. I try to urge others to donate whenever I hear that there is a shortage.
My husband was a multi-gallon donor before MM and he, too, laments never being able to donate again. I have tried to increase my donations over the past few years, after having fallen out of the habit during my son's young years. Aside from the saving lives thing, it's sort of my thank you to the people whose donations helped my husband when he needed transfusions during his SCT.
Ironic timing on this column. Today I took the survey. I was in the middle of doing something else when they called me. So I wasn't paying much attention to the questions since I've gone through this about 18 times now. Apparently, I answered "no" to the question asking if I'm aware Revlimid can cause birth defects. Whoops! I got no indication that I'd done anything wrong because the rest of the survey proceeded as usual. But an hour later, I got a panicked call from my doctor's office saying my prescription has been stopped because of that wrong answer and I better call Celgene immediately to clear things up if I want the Revlimid to be ready for my appointment next week.
Note to self: Pay attention during the survey!
I have been a long time blood door in my church and community. I do relate.
I too, was rejected from giving blood because I was anemic. I wish that I'd gone to the doctor right away because less than two years later, I was diagnosed with stage 3 MM.
I miss the ability to give blood. I always felt that I might be saving someone's life. The ads on TV and newspaper articles that mention upcoming blood drives make me feel guilty that I can't give blood any longer. Sometimes I want to go there and explain why I can't.
I also had to remove my organ donor check on my driver's license. No explanation was needed but I walked out with some sadness.