Pat’s Place: Is “Feeling The Love” Worth Risking A Post-Transplant Infection?
Last week I visited Wisconsin to attend the myeloma support group I had been a member of before moving to Florida almost three years ago.
My wife Pattie and I were members of the Wisconsin group for several years. We became close friends with many of the members, and I have kept in touch with them.
It was exciting to return! But it was also a bit “touch and go,” if you would excuse the pun. At support groups, handshakes and hugs rule the day.
The special bond between multiple myeloma survivors and caregivers is very strong. Even if you don’t attend support group meetings, can’t you feel it when you recognize a fellow patient at your oncologist’s office or in an infusion center?
Acknowledging these feelings is only natural. And as expected, things were even more physical at this meeting, where I knew so many of the members but hadn’t seen them in a long time.
As I described last week in my column, I was only 10 weeks post-stem cell transplant so I chose to wear a face mask on the airplane. So shouldn’t I also wear a mask when in a group like this? Shouldn’t I be discouraging physical contact?
Probably. But wearing a mask seems so impersonal. Had the weather been colder and it been during the cold and flu season, then I think the option of wearing a mask would have been gone and it would be a must in any crowded, public place.
I tried discouraging physical contact at my hometown meeting a few weeks ago. I carefully positioned myself to avoid getting too close to my friends. But a friend approached me with outstretched arms, and I knew she couldn’t be stopped or denied! We hugged, and that broke the ice. I was much more receptive as people filed out of the meeting.
And you know what? I didn’t get sick! And I sure felt a lot better!
So no—I didn’t avoid physical contact when I visited my friends in Wisconsin.
But guess what? I did wear a mask part of the time—at least during the “hug fest.”
It was simple. I explained why I needed to wear the mask, and I think everyone understood.
While I don’t consider myself a germaphobe, I have often wondered why gatherings of multiple myeloma folks are so physical. Expressing the bond I described before is important. But with a number of myeloma survivors stuck with low blood counts and compromised immune systems, common sense tells me that physical contact should be avoided whenever possible.
Shouldn’t there be some kind of fraternal non-physical exchange, like two winks and a nod, or a less risky elbow bump or something?
I’m kidding, of course. But it does make me wonder…
Anyway, the meeting is over and I am feeling fine. Better than fine, actually. Those great hugs and warm handshakes really stick with a guy!
Feel good and keep smiling! Pat
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
HI,
Oh I understand. When faced with our daughter's wedding with a reception line, I chose to wear gloves -- not everybody knew about my post-transplant condition. I felt it was easier than trying to explain and avoid handshakes and other situations.
Again, most commented about my sense of style without knowing the real reason behind the gloves. Who knows -- maybe a new fashion trend.
Gloves? Never heard of that before... Great idea!
Great article, I have had some of the simlar experiences, some people ask what's going on and others seem to pay no atention. I too feel the bond in waiting rooms and at the support group meetings. I find most people are eager to hear about your experience,It provides proof that they are not alone in their illness.
Amen, Genee! Thanks for reading- Pat
The Japanese bow. Maybe we should adopt that.
Great idea, Ed! Even a "fist bump" would help- Pat
Pertinent to your point:
http://www.christinelavin.com/index.php?page=songs&display=1353&category=COLD_PIZZA_FOR_BREAKFAST
Funny! Great poem about the very subject. Thanks, Ed!
Pat, question, after a stem cell transplant, how long is it before the doctor advises the patient of the initial result? I realize that the "ultimate" result may not be know for perhaps months (I think) but how long is the norm for the "initial" report? Thanks in advance for your answer! Ted
Hi Ted-
The most common answer is around the 100 day mark. Some go with three months. Others who are involved in studies, or have particularly fussy docs, get blood work and bone marrow biopsies done after a month.
Mine will be Thursday--just over three months since my SCT on July 1st- Pat
Thanks for the comments and good luck on yours!
Ted, if you have nonsecretory myeloma, they do a light chain test on your blood and urine at the 45 day post transplant and a bone marrow biopsy to know where your at with the disease. Then they do these test again at 6 months post transplant and then every 6 months afterward unless there are problems. I hope this may help other patients with this form of the disease. Oh and Pat I've never been a touchy feely sort of person, but since I got sick, I found out how much a hug can make you feel better. I'll take a hug over a few germs anyday, especially the ones my 10 yr. old grandson gives when I feel down. Keep Smiling! Dee
Ted and Deidre-
Some docs test even before the 45 day mark--and some wait longer. Every BMT Dept seems to do it differently. Thanks for making sure we don't forget about the "nonsecretors" out there, Dee. About hugging your 10 year old grandson... Hard to argue with that! Did you get any colds? Pat
Pat, believe it or not, I've had one summer cold and the docs think that was more my allergies being out of control due to the transplant. Nasty little thing they forgot to mention was that the transplant would reset your allergy resistance back to zero, no more chocolate, lactose free milk, no bannanas ( that one was a surprise). I've been lucky with this entire disease progression that I haven't had any bad colds, infections or organ damage and because of this I am already getting my immunization shots. Urgh! Have a great day. Dee
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