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Survivor of rare cancer

Maerlyn138's picture
Maerlyn138
Posts: 5
Joined: Oct 2016

Hello everyone, 3 years ago I was diagnosed with advanced HIV and several months later, after many tests and biopsies, I was diagnosed with an extremely rare type of lymphoma called Anaplastic Large Cell Lymphom, ALK negative. The overall prevalence of this cancer is around 3%. The prognosis for the ALK negative sub type is poor especially when concurren with advanced HIV. I received 6 rounds of chemotherapy followed by a stem cell transplant in January of 2017. Follow up scan after one year showed no new cancer growth. The cancer took a huge toll on my body leaving large areas of destroyed bone in my spine and hips.  The HIV is considered under control even though my CD4 count remains low at 212 and a CD4 % of 12. The latter result still leaving me with an AIDS classificatio.  

I know or feel like I should’ve had this great awakening in my life and had some sort of revelation after my recovery but I have yet to see it. I am considered by Social Security to be totally and permanently disabled, so I am collecting disability. This is fortunate because I used to bring in 2/3s of the household income.  The bills are now being paid but there are many and much to pay off.  I don’t know what to do with my life anymore.  My great passion in life was running. I ran 5k - Ultramarathon. Now it take a toll to run even a little and the drive to do it just isn’t there. The catastrophic toll it’s taken on my body and soul has left me empty. 

Mad long as I am sharing everything I am have Bipolar type 2, PTSD, and anxiety due to childhood emotional and physical abuse. I am on my medication and seeing a great counselo, but I still have mood swings and am affected by many triggers. There’s just so much and it’s been my whole life. I don’t know what to do anymore. 

po18guy
Posts: 910
Joined: Nov 2011

Cancer as well as treatment are huge life changers. Recovery, as you have found, can be a huge challenge, as our bodies are now damaged goods. I also had a stem cell transplant, using my son as a donor. I had the cousins of ALCL (Peripheral T-Cell Lymphoma, NOS as well as Angioimmunoblastic T-Cell Lymphoma). Fortunately, SSD also came through for me, as I was forced into retirement and lost 40% of my income as well as all health coverage.

It will take some amount of time to adjust to what life has thrown at you - it always does. Yet, you are stronger than you know qnd will get through this. Running is also in the past for me, but I have decided to be content with the blessing of life itself, as both your prognosis and mine were very poor. I have several other conditions to deal with, but I must be alive to have complaints.

When a door is closed, we find that a window is opened for us. And, the view from that window is sometihng that we can learn to appreciate - but it takes effort. You have a lot on your plate, and I admire your courage in facing it all. One day at a time, we can live out our post-cancer lives.

Maerlyn138's picture
Maerlyn138
Posts: 5
Joined: Oct 2016

  Thank you for your kind words.  I have been doing a lot of reading about cancer survivorship and they all seem to have these empowering stories of recovery and self discovery.  I am just waiting for mine to come.  I know I still have a lot of things to accept in my life post-cancer.  My cardiovascular condition is really low.  Feels lower then it should be but, as you know, the regular chemo and then the high dose chemo atom bomb they give you before a stem cell transplant really injures your body in the process of killing the cancer.  The big dose I got was with Melphalan, which I had to have ice chips in my mouth the entire time in was being infused to keep the circulation down so I would get sores in my mouth.  Ended up with some stomach and intestinal damage. Temporary, but it was a really effort to be able to eat anything.  Worse cramps than any food poisoning I'd ever had.  Melphalan, I read later, is basicly Mustard Gas in injectable form.  No wonder it destroys your immune system.

  I can see the way I've changed mentally.  Things that used to upset me are no longer even on my radar.  Unfortunately my libido has been way down since the transplant, and probably because of my mental state.  It really is a catastrophic life event.

I've been putting off going to group sessions with other cancer survivors, but I need to make the effort.  The hospital where I was treated has groups every month.  Maybe if I break out of one of my shells, the rest will be easier.

lindary's picture
lindary
Posts: 626
Joined: Mar 2015

As Po said, once you have cancer your body is not the same. I did not have all of the hurdles you had in fighting cancer but when I was done I wasn't able to do things I used to do. Some things I sitll do but slower. On the other hand my idea of a great day was spending it reading and that has not changed. The one thing that gets me it the fatigue. It is not as bad as it was 2 years ago but if I don't get 7 -8 hours sleep I am tired by the afternoon. On weekend I often sleep 9 hours to feel almost fully charged. Life becomes learning a new normal. 

Maerlyn138's picture
Maerlyn138
Posts: 5
Joined: Oct 2016

  I can relate to the tiredness and general need fo more sleep.  I had/have a very strong work ethic so when I have to admit to myself that I am too tired to do what I'd planned for a day, or just plain stay in my pajamas, it's hard.  It's that realization slowly sinking in that I have to get used to my body after cancer and treatment.  I have days like I had today where I woke up and started doing housework and finace work.  I got a lot done cleaning and nearly done with finaces, but by 4pm I was exhausted.  I did a short meditation and took a nap.  I think I am just constantly fighting against my new norma.  I have the drive to try and improve myself, but I notice the increased toll it takes on my body.

po18guy
Posts: 910
Joined: Nov 2011

...but still soldiers in the battle. We have been handed a "life" sentence - but not life as we knew it. Rather, a life that has been irrevocably changed. It is a life which allows us now to savor many more moments than before. Simply waking up and getting out of bed is now a reason to express gratitude. I can now pick and choose what each day will contain - outside of medical appointments, that is!

Mustard gas. Autopsies on deceased WW1 soldiers revealed that their bone marrow had been destroyed. Knowing this, "mustard" gas was later experimented with as to leukemias, and worked to a degree. I see also that Cyclofosfamide and Bendamustine are nitrogen mustards, in the same class as Melphalen. 

Yes, translant prep can be brutal, but it is less brutal than the lymphoma. July 2015 I underwent a moderate intensity haploidentical allogeneic transplant. Dealing with cGvHD ever since. Our personal breakthroughs are cognitive, psychlogical, rather than physical. Thus, they are an act of the human will.  

Maerlyn138's picture
Maerlyn138
Posts: 5
Joined: Oct 2016

very well spoken. I admit your words honestly insp me 

po18guy
Posts: 910
Joined: Nov 2011

...is the one we construct for ourselves. Struggle as we do to grasp that past life, it is receding in the rear view mirror. Fine! We have fond memories (and let's face it, some not so fond) that will ever be with us. Still, we have the gift of life and while changed, it has been enriched in certain ways. Our focus is sharper, our attention to details, the notice we pay to kindness and the love we receive - the love we give!

I note that I have had experiences, gone places and met people that I never would have otherwise. It is all a matter of perspective, but is that not a reason for gratitute at some level?

Bottom line: Life is still worth living.

lindary's picture
lindary
Posts: 626
Joined: Mar 2015

This is something I just realized I was doing. 

2016 is when they took me off the stem cell list. I was out walking (thanks to Pokemon Go) visiting friends and family, just doing stuff. Then in Dec I slipped on somethin at the mall and went down on my butt. Went to ER and no broken bones but I didn't go back there until early this year. Even then I just went to one store.

2017 my husband decided we would take a vacation to DC in spring. My first time to DC. Had a great time but I found I couldn't walk as much as I used to. Got home and took it easy for a few days which extended into weeks. Looking back I never got back to walking like in 2016.

2018 activity level LOW. A few months ago I looked at some stuff that had piled up in a spare room. For over a year I've been wanting to sort and eliminate but kept telling myself I didn't have the energy. Then I decided enough. I was turning into a lump. The only way to get moving was to take baby steps. Each time I took a day off from work I did a little. In 5 weeks the stuff was gone. So for me the prison door is open. Now I just need to get out of there and stay out.  Wink

po18guy
Posts: 910
Joined: Nov 2011

I do not want to live long enough to clean up my "lump"! Bit, I probably will. My problem is picking away at it. I'm more passive/aggressive., losing interest if I cannot see substantial improvement. But, I now have your example!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

Po, Linda,

My goal in life is "excising the clutter bump." Congrats to you, Linda.  I can definitely relate to the tiredness.  I have more energy today than I did for the first year following prostatectomy in 2015, however, so my experience is that energy comes and goes; I know at at some age it will just set sail and never return. But not there yet !  Hoping everyone can achieve a recharge.

Maerlyn138's picture
Maerlyn138
Posts: 5
Joined: Oct 2016

you don’t usually realize the prison you’re in until it’s either pointed out to you or you realize it on your own. The first year after the stem cell transplant I was obs with looking up the various studies showing the estimated prognoses and constantly worried myself about not making it. According to the most recent study I read, from 2015 done at Baylor here in Dallas, There have been less than 100 cases world wide of my cancer co-occurring with advanced HIV. So that always weighed heavily on my mind. How can I really know what to expect when so few have been in this position?  After my last visit with my oncologist all my labs were fine and I am feeling fine so that ended up being a big load off my mind

po18guy
Posts: 910
Joined: Nov 2011

Sometimes, it simply means out of the ordinary - but you and I live in that medical neighborhood in any event. Again, your personal "prognosis" is either 0% or 100% - you either survive or you do not. The fact that you investigated means that you chose wisely: survival. In retrospect, a 99.5% chance of succumbing over the past 10 years would not have been helpful in my case. Good thing that I did not ask until just recently. 

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