Friday, July 15, 2016

The Purple Tattoo: Wow, it's been a long time. Life moves quickly!

The Purple Tattoo: Wow, it's been a long time. Life moves quickly!: Wow, it has been a long time since I updated this blog!  I guess I've just been living a normal post-cancer life and we all know it goes...

Wow, it's been a long time. Life moves quickly!

Wow, it has been a long time since I updated this blog!  I guess I've just been living a normal post-cancer life and we all know it goes by too quickly.  I recently had someone who found this blog online send me a message.  A cancer patient I don't know, a complete stranger reached out.  This happened a few times when I was blogging regularly, but this was recent.  I was kind of surprised that a complete stranger wanted to know about my life post-cancer.  That's really what prompted me to write.  During treatment this blog was therapeutic and a way for me to share updates with friends and family.  Little did I know that there were other people out there who read it and really wanted to know these personal things about someone they have never met.

I just celebrated 3 years cancer-free on June 20.  I spent the day on the beach with two besties and it was absolutely amazing.  I took some time to reflect as well.  One thing for sure...cancer still impacts many areas of my life.

As I am still having PET scans every 6 months I find I coast along until just before my scans.  Then the anxiety sets in.  I don't sleep, I worry constantly.  This year I had a lymph node around my clavicle swell up and that about put me over the edge.   I've discussed this anxiety with my doc and he assures me this is 100% normal as do other survivors.  At the three year mark I am told statistics for recurrence go waaayyyy down!  That is good news!  Now to make it to that 5 year mark and go from "remission" to what they consider cured.  I also just found out that my oncologist is leaving FL Cancer Centers.  This is upsetting.  I put my life in his hands 3 years ago and he saved it...he is a safety net of sorts.  It will be hard to trust someone else who steps in at this late date.  There is a real bond between doctor patient.  I have it with him as I do the doctor who delivered Lucas.  They both changed my life.

Cancer/chemo is the gift that keeps on giving.  The side effects can be long lasting.  I've been doing some reading lately because I became worried that something was wrong.  I have found that many people experience the fatigue and lethargy for years after chemo. I know I am not the same...not yet. I have also broken several teeth.  I remember my dad talking about cancer and how chemo can make teeth brittle.  Guess he was right.

Thanks to chemo I am experiencing early menopause.  Wow...no one tells you how bad this little life event can be. I now know why some women are so cranky.  This is no picnic.   I have hot flashes throughout the day and they get worse at night.  Most nights I see every hour on the clock either because I am sweating or because I have to pee.  My brain is foggy..some say this is from menopause and some still blame this on chemo brain.  Either way...it's not fun.  My memory is not nearly what it used to be and it is frustrating.  I have found that I have to write things down, make lists, etc.  way more than before.  Mark can attest to the fact that my brain is foggy.  This week I have felt like I'm losing my mind so I've been in touch with the doctor and we are investigating HRT.  My oncologist originally said no to this, but it is becoming a quality of life issue and the rewards outweigh the risks in my opinion.  I seriously cannot take much more.  Tonight is a perfect example.  I went to be about 9:15 because I was absolutely exhausted.  I was awake at 10:45, 11:30, 12:51 and now it's 3:22...I've been up for over an hour with no signs of going back to sleep soon...until of course it's 6am and I should be getting up.  Then I'll be a zombie.  It sucks and is really taking a toll.  I also have developed really bad allergies.  The last few years I have gotten really sick late winter/early spring and it has been determined that this has stemmed from allergies.  The allergist says she has seen this in cancer patients.  There is some thought behind the damage to immune systems from chemo and this could be why my allergies went from just a little bothersome to REALLY bad.  I have also decided that once you have had cancer doctors are constantly paranoid about more cancer.  Every little thing gets investigated or biopsied and blood is constantly tested.  Better safe than sorry I guess.

I have recently had the opportunity to be a mentor to another Hodgkin's patient.  When I finished treatment and got the "all clear" I registered to be a mentor through Immerman's Angels.  This is a service which aligns people going through chemo with a mentor who has been through the same experiences.  My mentee was a 46 year old woman from CA who is in the middle of treatment for the same cancer I had...same stage.  She is receiving the same protocol I went through and we have spoken a few times.  She was frightened an had questions that really could only be answered from someone who has actually been through it.  It felt good to help.  I no longer angel to pediatric cancer patients as I had in the past.  After I went through treatment this became even more difficult emotionally than it had pre-cancer, not sure why.  The last little boy I angeled for was only 3 and VERY sick with a poor prognosis...I just couldn't.  Maybe it just became too personal and to think about a child and his parents having to deal with this was just too much for me.  I know the reality of the disease, have been through the treatment, have felt like shit...can't imagine having to watch my child going through it.  I feel like a coward...but it was just too much for me.

I am still trying to live a more conscious life and to be thankful that I am here and healthy to enjoy it.  I stress the "trying" part.  In our busy, stressful world this is not always easy and I often need to remind myself to stop and slow down and live in the present.  It's easy to get caught up in the stress of everyday life.  I am making a big effort to not stress the small stuff.  No one cares if the house is not perfectly clean, no one cares that the laundry isn't done, but my family enjoys spending time together doing special things and this is what makes memories. I try to get to the beach more often as this is my favorite place.  The only place my mind really stops and just lets me "be" and relax,  Lucas is growing up so fast and it is truly a gift that I am here to witness it...for so many cancer patients this is not the case.  I am fortunate and I don't ever want to forget it...to take it for granted.  I am fully aware that life is a gift.