Pat’s Place: My New, Unexpected Superpower
As my regular readers know, I am in the midst of my first stem cell transplant to treat my myeloma.
I don’t care how many doctors say this is a “tolerable” procedure--it isn’t any fun.
I am nauseous constantly, tired as my blood counts crash, and battling to keep diarrhea and mouth sores at bay.
But I’m always looking for a positive spin or silver linings as I wait for my stem cells to engraft.
For example, when I learned I would be receiving anti-fungal medication, I lobbied the transplant pharmacist to give me meds which could help cure my toe fungus at the same time.
She didn’t, of course, but it was worth a try!
However, I have discovered an unexpected bonus as I suffer through all of this: The superpower of incredibly heightened smell.
OK, it’s not the ability to fly or see through walls. And I’m not sure how being able to smell like a bloodhound can be used to fight evil.
But I will share with you that I am now able to tell when the meal cart hits the floor--whether I’m hungry or not. When I’m walking through the halls, I can follow a scent cloud for minutes after the perpetrator has moved on.
Beside the fact that any smell can make me nauseous at no warning, I’m still not sure if there are any benefits to my new-found superpower. But, HEY!, it is fun being able to identify what someone who walks by has had for lunch or what type of shampoo they are wearing, minutes after they pass by without asking.
I would like to pause here and thank all of you who have left positive comments and suggestions here at the Beacon, by email, or on my blogs.
I may not have the strength to answer each contact individually, but please know your kind words absolutely make a difference. I live for you guys!
Feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
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Pat, your ability to traverse the challenges of your SCT with such apparent grace and intestinal fortitude is truly inspiring! Keep up the good work!
Sending you all my best wishes for this treatment to work.
I find that very curious that you are able to smells more than you did before. I cannot very much of anything. You are probably aware of the commericals for medicine that causes longer eyelashes! Well it was discovered by accident when someone take glaucoma medicine noticed that ther lashes were growing. So, I too after taking the medicine for glaucoma, have longer luxorious lashes!!
I wonder if any of the medicines you are taking have a stronger sense of smell as a side effect.
I want to thank you for your column. I gain strength from your strength.
Carol Wong
Pat, My hubby had a transplant in January & although his symptoms were mild (doc. said in the top 5% 0f those "breezing through it") he also had the hightened sense of smell & could not tolerate even seeing the green covers on the food tray. Luckily the hospital allowed us to bring in our own food so he lived on soup and tuna salad for 2 weeks. He's doing great now, so keep focusing on the the good days that are to come! By the way, our electrician recently told us that applying hydrogen peroxide to your toe nails gets rid of the fungus-we haven't tried it yet, but I too thought that surely all the chemo & other meds might get rid of that, but not so far. Thanks for all your encouraging thoughts-it helps so many of us!
God Bless.
Gail Crooke
We'll be the first ones, Pat.
We ARE the first ones: prepare yourself for decades of follow up!
Greetings from Italy.
Nicola
Keep fighting, Pat! Not an easy process but there is light at the end of that (smelly) tunnel. Stephanie
It feels soooo good when it's all over. And now almost a year later, I feel better than I have for years!!
This picture shows my hair grow-back after 8 months
Praying for you,
Julia
glad you are doing good pat,kinda odd my sense of smell went the other way, icould only tell if something smelt bad,and all bad smells seemed to smell the same.
good luck and keep smiling
yes nausea and a heightened sense of smell is horrible. I had that. The smell from the person next store getting their stem cells (that corn smell) made me so nausueas. I had to keep the room door closed up all the time. I can't stand it to this day will never eat it again. My sister relaed it to morning sickness during pregnancy.
Have you started the nupegon yet? Gets better after that...
Oh and mouth sores.... yuck. Slurpee from 711 and freezies are the best medicine. My whole toungue and throat peeled. But that also happend on Velcade which I understand is rare. Some of us are just lucky I guess.
I am sensitive to medications, so I get pretty much every side effect, and then all the wierd ones too
I agree with Julia, a year later I feel better then I have in several years (before Myeloma). I woul in fact do it all again if I had too because I have such a dramatic difference.
Good luck!
.......and has anyone mentioned YOUR SMELL? The "canned corn" smell from the preservative that is in the collected stem cells that went back into your veins? Don't know if that has changed in the years since I had my SCTs, but though I couldn't smell it on myself, everyone else could (and I could smell it on other SCT patients).
Hi Pat, sounds like your doing well. What's this about corn, the DMSO smelled like garlic to me and it lasted for days. I don't know, maybe its being part Sicilian or as my son put it a natural warded off from vampires. At 6 months out from my SCT my allergies are back to square one, all scents and fragrances have me running for cover; that might be why you saw the signs on the doors. I feel better than I have in 1 1/2 yrs. and they have let me start exercising again ( my c-2 has healed on its own). So hang in there, it gets better especially when you get home. I wish you all the best, Dee
Keep those spirits up, Pat, as you continue on this journey ! The dr's may say the PSCT is tolerable, but it takes a lot of internal strength and coping skills to get through it. I had my transplants in 2000 (my introduction to the 21st century !), and again in 2004.....and both times I experienced the "garlic" odor like Deidre - they said I smelled like the Olive Garden as I walked the halls. Diarrhea, mouth sores, nausea and fatigue pretty much sums up my experience, too.
Stay positive - mark those days off the calendar - it does get better !
Pat, you are amazing - Day 7 - and you are out there writing your articles when you probably feel like just crawling under the covers and sleeping!! What courage and stamina - thanks for keeping us all updated. Rex and Kay
I just tuned-in. WOW! So great to hear from my readers...
My sister-in-law thought I smelled like cinnamon. Remember me mentioning how I could smeel a person who had already left minutes before? I was walking the halls and could not even see the person walking in front of me... She smelled like cream corn! I couldn't smell me, though- Pat
Dear Pat,
I'm sorry it's so hard. It's quite amazing that you can find things to write about that keep us smiling.
I look forward to your next post.
Linda
Linda-
It is hard. But everyone's thoughtful advice and positive energy are really helping!
And Jan, I think all transplant docs should have to undergo one of these things before they get their stripes! Let's hear them call it "tolerable" then!
Hang in there, it does get better. But it is rough going for a while. It has been 2 and a half years since my transplant and I still have the heightened sense of smell.
Keep writing...you give me such hope for my future!
Hi Pat...or should we just call you Olfactory Man now?
Good News Pat- the SCT process completely cured my toenail fungus. I had fungi on both little toes which ended up completely cured a couple months after the SCT. I discussed with my onocologist but she was not aware of the side affect but felt it was reasonable. I also forwarded the information to Novarits (drug Company).
My sense of smell has never been very good and I was so nauseous I didn't notice any difference.
Sadly, (maybe not!) I am already losing my super sense of smell. Funny, Lou!
John-
If I can be as lucky with my toe fungus I will be a happy man...Bad toes isn't much of an issue up north, but I'm living in the world of sandals down here in Florida.
Pat -
Hang in there. I went through the procedure last August. I too thought it would be easy. They were right when they told me that first they try to kill me, then they rescue me. However, the killing part seems to last quite a while and the rescue part is a slow train uphill. Not fun. Not even nice. But, when my counts finally started going up I was filled with joy and purpose. My family and friends helped me get through an ugly experience. Now I feel almost as good as when I was unaware that I had a disease. You will surely come out of this a better and healthier man. I love reading your columns. Don't worry if you don't feel like writing. It will pass.
Best wishes,
Marianne
Silly question maybe? Would having an aromatherapy spray make things better? I'm pretty sure the hospital would not allow a candle. May not allow the spray either since it could be seen as compromising your immunity. But worth considering?
Marianne-
Sorry you had to go through that... Glad you are feeling better now! I never thought this would be easy--that's why I put it off over four years!
That's a great suggestion, Ed! I'm going to try that!
Pat,
As a caregiver to someone who has been diagnosed very early, it is very helpful to get your insight on what is to come. There is so much fear about the unknown. You are helping so many people. We too are in Florida (the Tampa Bay area) and we travel to Moffitt every 28 days for a check up. It's nice to hear about your experiences there.I hope you are feeling better soon.
Take care,
Renee
Thanks, Renee! Glad if I can help. Sure, I would rather not need to go through all of this, but it helps to know others might benefit from my experience- Pat
Pat, thinking of you and hope you are feeling better each day. This column, along with all the posts has been really helpful as I prepare to support my sister through her stem cell transplant. We are in round four of chemo now and hope she will have the procedure in late fall. Best, Deb
Hi Pat,
It is so good to hear from you. I had to smile when you described walking in the hallway and the odors you encountered. I soon learned to make a concerted effort to go out to walk before the food carts arrived. If I was too late, I would hold my breath and almost run by the cart! Due to nausea, I also would not let the tray of food stay by my bed. I would take the food I thought I might be able eat and then have the tray taken away. Even iced tea got to me! I was glad to hear the strong smells are beginning to pass for you, and it will get better and better.
The fact that you are walking in the halls and are able to write to us shows how strong you are, and before much longer, the side effects should begin to subside.
Keep your chin up! You will come through this with flying colors.
Linda Mc
Hi Deb-
Email me with questions anytime if you like. I'm glad I can help- Pat
Hi Linda-
Things are looking up... I just don't want to jinx it! Thanks for the pep talk!
Hi Pat...hang in there baby! Although it was a pretty awful process to go through, I started to feel better after a few weeks, and got myself off the couch to go walking outdoors, with the help of family and friends. And that was a lot with my sore back issues!! The daily walks helped my peace of mind and got me stronger too.
One thing that the nurses got me to do during the process of the SCT, while I was getting the IV infusion of Malphalan, the powerful chemo drug to destroy the marrow, the day before the SCT.....was to suck on crushed ice for maybe six hours! Although this wasn't much fun, and my stomach felt like it had been frozen, it prevented mouth and throat sores. The cold ice kept the blood flow away from the sensitive tissues of the mouth, and so it did not receive as much chemo. Now if only ice on the head could have saved my hair!!! However, about the hair, I got a nice wig , and 18 months later, have a full head of hair again.
So best wishes to you...and don't worry, you will soon feel better. I also had an overly strong sense of smell and even the lemon scent of dishwashing soap made me ill...couldn't wash dishes for awhile! It all settled down in a few weeks however.
Keep hanging in there Pat. I am waiting to find out if I need a second transplant after my pet scan tomorrow, then my scheduled bone marrow aspiration next week. Like I told you with my first transplant it was no smooth ride. Diarrhea,Mouth sores and mucusitis not fun. My prayers and thoughts are with you and others like us. Keep positive no matter what.
Hi Pat,
I had my SCT on June 22nd--longest day of the year. Did you smell the tomato soup smell from the DMSO in your cells? I enjoyed it for about 1 minute then they handed me the mints.
The worst part of the transplant for me was not wanting to do anything. I didn't want to sit in my bed anymore, but didn't want to sit in a chair either, didn't want to stand and didn't want to walk, was sick of TV etc. It was a little claustrophobic.
I'm home and mainly dealing with light headedness and...giving myself injections! I never thought I could do that. But now that I've done it, I'm ready to vaccinate our pets!
Good luck to you Pat. Stan
Hang in there Pat, going thru the sct was the hardest thing I had ever done. But you do get thru it . I coudnt eat at all and only drank ensure. It was all I could tolerate. But you will get thru.... Best wishes
Christina
Sct in march 2006
CR for 4years.
Relapsed June 2010
Rev /dex for 9 cycles and in CR again. July 2011
Sucking on crushed ice was awesome advice. All I have is a moderately annoying sore throat. But I can't even look at ice now! Drinking everything at room temp!
Pat, so glad you didn't get the terrible mouth sores -- other side affects sound "normal" - I know the hospital isn't fun - but reading others' experiences, sometimes going home too soon results in a readmission. Take care and know we're thinking of you as you head toward recovery. Rex and Kay
Stan, this is just how I felt!
"The worst part of the transplant for me was not wanting to do anything. I didn’t want to sit in my bed anymore, but didn’t want to sit in a chair either, didn’t want to stand and didn’t want to walk, was sick of TV etc. It was a little claustrophobic."
Well written, Stan! "Kansas" (Rex and Kay) make a great point: Don't rush or push things so fast you end up needing to return. It does feel good being an outpatient now, though! Thanks everyone!