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New member....emotions all over the place

bshons
Posts: 5
Joined: Dec 2020

Hi. I Am new here. I saw a dermatologist in May, after discovering a lump on my scalp. She said it was a Pilar cyst and nothing to worry about. Within weeks, it started to grow and I returned to the dermatologist. She was alarmed, did a biopsy, and one week later, on July 20, she called to say I had diffuse large B cell lymphoma. Specifically, it was Post Transplant Lymphoproliferative Disorder, PTLD,  which is a post-transplant cancer. I had a kidney transplant in 1995. The next day, I was in the oncology clinic. I had. PET scan and. a bone marrow biopsy. My treatment was 4 rounds of Rita in and 17 radiation treatments to my scalp. Treatment ended almost 2 months ago and last PET was clear. I feel like everything happened so fast and I am just sort of coming to grips with everything. I live in  a Senior apartment building and people aren't wearing masks in the public areas. I feel kind of trapped in my apt. and, what with COVID and the cancer, I feel anxious about my future. I am finding that I have more-than-usual brain fog and can't seem to access words and names like I want to. Has anyone else felt this way after treatment? I guess I am just looking for a place to belong. Thanks.

bshons
Posts: 5
Joined: Dec 2020

I will do better. 

po18guy's picture
po18guy
Posts: 1191
Joined: Nov 2011

Right here is a great place. Sounds like you are not a kid. If you run back a few years (or decades), you will find that you have endured a lot. And you came through it all. Think of that. You are stronger than you know. Organ transplantation is a huge deal, yet you did it. Somone gave you a new lease on life. I grant you that secondary cancers are indeed a risk of cancer therapy and of organ transplant. Yet, if the  DLBCL was confined to your skin, then there is a good chance that it is gone. As to Covid, we should take all necessary precautions - but I find the media somewhat hysterical over the entire thing. The human mind is not programmed for 24/7 "We're all gonna die!" input from any source.  Yes, it is very serious. Yes, it has upset our lives and routines, but how many times do we need death tolls? I have been subject to every virus and every childhood disease since having a stem cell transplant 5 years ago. That, and my suppressed immune system could turn on me at any moment.

Yet, I have life to live and for a bit of perspective, we are at substantial risk each time we are in a car. 102 Americans - from children through the elderly, succumb to traffic collisions each day. I'll bet we don't worry about driving all that much. Yet the danger is there. We need peace and we are in the season of peace - those of us who still observe the Christmas season. Taking the tree down and putting ornaments away does not somehow make us ready for the incessant assault on our peace of mind. At times like this, it is good to ask ourselves: What do we believe? How were we raised? What hobbies do we have? The busier we are at doing things we enjoy; the more we engage in contemplative or meditative activities, the more peace we will experience. Read a good book, call or email an old friend. Stay in touch with family, or join a new "family" - actually that is what you are doing here!

I find that giving thanks for each morning helps to set the tone of gratitude for the day. A new habit, if you will.

 

p.s. sorry for any typos. I have both chemo-induced and diabetic neuropathy.

p.p.s. Typos missed the first time around (mostly) corrected.

bshons
Posts: 5
Joined: Dec 2020

I appreciate your post and it gives me encouragement and food for thought. It also serves as a warm welcome. Thank you.

ShadyGuy
Posts: 684
Joined: Jan 2017

After I finished my second set of chemo in June 2018 I had some cognitive troubles similar to what you describe. Good news is it got better and am now back to (near?) normal. Hang in there and try to be very, very active,even when its difficult to do so.

bshons
Posts: 5
Joined: Dec 2020

Thanks for your reply.

Evarista's picture
Evarista
Posts: 317
Joined: May 2017

Hi Bshons.  Sorry to hear that you are struggling, but please take heart in knowing that what you are experiencing is pretty common.  It even has a name that you can google:  "chemo-brain" or "cancer-brain". It should improve with time and you can help yourself improve by exercising your brain along with your body:  word games, crosswords, Soduku puzzles, jigsaw puzzles.  You can find plenty of free ones online (I like NYTimes & NationalGeographic-jigsaw-puzzle-of-the-day, but there are others).  

It must be frustrating to find people in your living situation being non-compliant with COVID guidelines, but if you can get out-of-doors safely with your mask on, perhaps that can help.  Adding a face-shield (simple inexpensive ones on Amazon) might make you more comfortable if you need to use elevators or pass through public spaces on your way out. Best of luck and stay safe.

bshons
Posts: 5
Joined: Dec 2020

Thanks for your reply. I do like puzzles and have been working on a variety of them. Great suggestions. When I feel up to it, I mask up, put a hat on (to cover hair loss from radiation and to keep my head warm) and try to avoid people on my way to the elevator and the outdoors. I am doing my best to stay safe, but it does get lonely.

ShadyGuy
Posts: 684
Joined: Jan 2017

do you have friends or familywho could meet you outdoors for walks? With a few simple precautions that should be safe. I cannot over emphasize how walking helped me. Some days I had to force myself to do it. "Courage is when you are scared half to death but saddle up anyway" John Wayne?

Burni's picture
Burni
Posts: 15
Joined: Aug 2020

Your not alone.We all understand how your feeling!Your the first person that I read that had a lump/nodule on thier scalp. I did too.Mine started going down with my first R-chop.Im NED now but as well as others we have side effects.Try to stay active,and know we are cheering you on!!

lindary's picture
lindary
Posts: 709
Joined: Mar 2015

I have been in remission since Nov of 2016. It took almost 2 years before that feeling went away completely. I knew too many people who complained about memory problems after cancer so I made a point of finding online games to play daily. Picture searches was one type. I actully sucked at those but after doing them for the last 4 years I am getting a lot better. I also do Suduko & crossword puzzles. Age is a factor for me too since I turned 70 last year and retired from work. I work hard to keep challenging my brain.

 

ShadyGuy
Posts: 684
Joined: Jan 2017

Great advice Lindary. Both body and mind wither when not used. I do genealogy which to me is much like solving puzzles only sometimes much harder. You meet a lot of nice people. Last year I helped two individuals whose DNA tests showed were my relatives find their birth mothers, both of whom were my first cousins. Very rewarding and I made a bunch of friends with cousins I never knew existed. And I love the outdoors and working with my hands. I make metal parts for antique guns. I am now designing an amateur rocket. Gotta keep moving. Its what life is all about. And staying active is the best cure for depression/discouragement. I do not watch tv. Life is what you make of it.

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