Recently I got to attend a neat conference for young adult cancer survivors called CancerCon put on by Stupid Cancer in Denver, CO. An artist there drew the "main events" of my story on this large roll of paper...
I had a neat opportunity recently to share some of my experiences with pain and art therapy on Dr. Paul Christo's show, Aches and Gains. I also share the segment with a former professor and colleague, Megan Robb, who is a medical art therapist and professor. The archive of Part 1 can be found at: http://www.paulchristomd.com/art-therapy-part/
I get asked frequently, "So...how are you doing/feeling?"This seemingly "easy" question always makes my voice catch in my throat for a bit.It's so complex that I don't even know the answer completely.Most days I can trick myself into thinking I'm doing well and that I'm a healthy-ish person.I
work part-time, I work out (even running stairs at the park the other
day for a challenge and starting an intro silks and strength building
aerial arts class soon), I go to a few concerts/yoga events/etc.I traveled (successfully) to Boston and Rhode Island recently (without an ER trip).I keep pushing myself to see what will happen.
Life is wonderful in so many ways but there's always that lump in my throat knowing it could change at any time.Lately the answer I have come up with is, "Pretty good...I'm stable".But that's not really accurate at all.Most of the time I feel "stable" but that's far from the truth.Recent doctors appointments reminded me and confirmed that I still live with a life-threatening hole in my chest (bronchopleural fistula) and some of the medicines I'm on are starting to affect some of my blood counts. The hole shouldn't be
there and it exposes me to things every day, that could easily kill me.(Bronchopleural fistulas normally can have high mortality rates.)And mine cannot be treated right now.I
wake up every day and assess my body and how I feel to see if this is a
day that everything could fall part again. I try not to let the fear
interfere too much and focus on the life I have to live.I also work at a hospital which is probably one of the worst places I could work. It
exposes me to all kinds of germs, but it's a risk I'm willing to take
for a job I adore and I take extra precautions.
I should probably start saying something Iike, "I'm stable-for today or
for this hour" (and let's hope it stays that way for a long time).
Survivor Guilt: condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not...-Livestrong.com
As another close friend passed away last week after a long 12 year stint with sarcoma, it reminded me of a topic that I have been asked about fairly often...do I have "survivor guilt" and how do I deal with it?
I definitely miss many friends from over the last 17 years that have come and gone. I keep a mirror with little built-in frames around it with all of their pictures. It's getting cramped and I really hate adding pictures. I try not to look at it too much. Some days have more hard parts than others. Or other times a song will come on that reminds me and I get goosebumps or a tear in my eye. A lot of times it makes me smile though like they are saying "hi" and I remember beautiful memories and smiles.
My life is better because of all of them-absolutely. That's why I don't shy away from people who aren't doing well. If anything I am more drawn to being there for them when others may not. Death doesn't scare me. I've come so close so many times. Of course death can really suck but sometimes sickness and death are more comfortable topics for me than many others. They are the realness and reality of life-especially my life. It's why I offered and led a grief and loss group at my previous job and was the go-to for presentations around these subjects in graduate school. It's something I will be around often at my new job.
I certainly do not understand why I am still here when many of my friends are not but I don't feel "survivor guilt" for the most part. How I deal with it is trying my best to live my life in all of my friends' and family's honor. To do things they could not do. To help others in their memory and keep persevering-because that is what they would want. While missing my friend's out of town memorial service in a couple weeks hurts, I know she would want me to work at my new job and help others. As another friend told me in her last couple days over her oxygen mask, "Rachel-you must keep fighting here on Earth and I'll keep fighting in heaven". I try my best to keep my promise to her...
On that note, I am ready for a new year too. New job, new opportunities and hopefully upwards and onwards with health and everything. There is lots to be grateful for!
“You may encounter many defeats, but you must not be defeated.
it may be necessary to encounter the defeats, so you can know who you are,
you can rise from, how you can still come out of it.”
17 years just passed since the day I was diagnosed-Friday, December 4th, 1998. So hard to believe! There have been more years with cancer and its effects in my life than not, which comes with its blessings and its challenges. I have seen some other cancer survivors reflect on their journeys recently in tangible terms of number of treatments, etc. and decided to explore mine that way for a change... -Many surgeries including: 2 intense Askin's Tumor removals
(egg-sized around top of spinal cord and small Nerf football between heart, lung and spine), gall bladder removal,
many port surgeries in and out, entire right lung removal (1 rib removed, 1 repaired with metal), window installation (2 pieces of rib cut out and open cavity created), closing
window/moving around chest muscles and tissue and reconstructing my chest (another rib removed)... -Other treatments: autologous stem cell transplant; 2 separate protocols of radiation (6 weeks and a few weeks);
3 separate regimens of intense chemotherapy-1 year, 6 months and a few months;
1.5 years and counting for mycobacterium treatment, stem cell harvesting (at least twice)... -Endless types of medicines and ways of administering: shots (thighs, stomach, backs of arms),
pills, IVs, PICC lines, central lines, ports, catheters, medicines that dissolved under my tongue, ones that went up my nose... -Many strange reactions and side effects to said meds including: all my skin and nails peeled including
intestinal linings, red man syndrome (red rash all over body),
hallucinations, extreme hunger, no appetite...Medicines that have gross tastes (metallic, salty, etc.)
in my mouth but went through the IV, multiple kinds that turn my urine
red, ones that can damage organs, and ones that made my hair fall out (3x). -So many procedures and ways to measure things in my body that I can't remember them all: MRIs, CT scans,
X-rays, bone scans, ultrasounds, MUGA scans, hearing tests, echos, pulmonary function tests, sputum samples, physical therapy, broncoscophies, colonoscopies, bone marrow aspirations and bone biopsies etc. -Things I can't count how many times I've had taken or been asked:
swabbed with alcohol or Betadine, blood tests, blood pressure, weight, temperature, pain scale, talk
about bowels, urine tests, pulse ox levels, etc. -Some odd medical facts about me: Through all the meds, only 1 allergy has ever been found and even that isn't really a big deal (don't even consider it a true allergy) although I do have preferences like a strong dislike for IV Benadryl; I had never made a trip to the ER until 2 months ago when I was out of town; I have never ridden in an ambulance and I have never fainted. But somehow amidst all that I'm still here doing my thing and I normally don't dwell on all of the above. My body and mind are resilient. I was honored to marry the love of my life. I've met incredible people throughout these years-a lot of them because of cancer. I've traveled many places including places worldwide speaking and sharing my story. I received multiple degrees. I continue to remain active and work out. I give back when I can. I am surrounded by an amazing husband, family and friends who are like family. I am truly blessed and while some might be depressed about all this, I truly try to make the best of it. Some days definitely aren't easy but overall I'd rather be here continuing the fight than the alternative. Here's to 17 years and counting of living! Rachel
You may encounter many defeats, but you must not be defeated. In
fact, it may be necessary to encounter the defeats, so you can know who
you are, what you can rise from, how you can still come out of it. -Maya Angelou
There is so much on my mind and so much I could write about. My current daily world involves a lot of patience and wondering. Parts of my recent post, Living Life on the Edge, has hit home sooner than I would like to admit. A couple weeks ago, while on my "relaxing getaway", I ended up in the emergency room. I had 2 days of relaxing enjoyment beforehand. The physical symptoms were sudden and unexpected. I was visiting an amazing fellow sarcoma survivor friend in New Hampshire. Her daughter, her and I were sitting and enjoying dinner and some ginger tea when I started coughing/choking on large amounts of sputum. At first, I wanted to believe that maybe it was leftover from a mild cold I had the week before. But there were large amounts of junk coming out of my mouth and reminded me so much of when I'd had a fistula in January. Then came the odd squeaking and wheezing noises inside my chest from where my lung used to be-things did not feel right. I was hoping never to hearing the crying sound coming from my chest ever again. I took a shower to try to calm down and think through what to do. One of my fears has always been to be on vacation and have to go to another hospital, where no one knows my medical history or anything about me (I know that I have always been somewhat coddled where I am treated). I called my husband and he said I should call my surgeon. The doctor called me back immediately and said I needed to get some tests done at a local hospital and see if I could make it home but we were all still thinking that hopefully something else going on. It was what I think of the typical ER experience being like: long and slow waiting all night but not enough time in between to actually sleep at all. Ironically, I had never been to the ER (because of my aforementioned doctors, any hospital stay meant I was whisked through to a private room when needed). It was a teaching hospital and so with my extensive history, I was quite the spectacle for the residents and senior doctors. I was different and fun at first-a patient with rare issues who knows what they are talking about in depth (even having copies of x-rays and blood counts on my phone). As the night wore on and they realized something was really wrong, the mood changed. They seemed to want to get rid of me and send me back to my regular doctors. We had lots of mixed messages throughout the night of internal bleeding, pneumonia, bronchopleural fistula, etc. In the end, I was cleared to fly home with uncertainty about what was going on and a CD of my x-ray and CT (but I knew...I knew in my heart it was another dreaded fistula...as my doctors had told me before-you just know when you have one because the symptoms are so unique). Getting home was overwhelming to think about: I had 2 flights, luggage, had pulled an all-nighter, was coughing up large amounts of gunk and so weak. My truly amazing husband actually flew from St. Louis to New Hampshire, drove an hour to where I was staying, got there at midnight and flew back with me the following day.
Since getting home, I have had some testing done where the fistula and infection causing the infection have been confirmed. This was truly something that should not have happened...everything had been done to prevent this, but me being typical me, it somehow became possible and happened. So, now it is up to my doctors to get creative once again...I feel for them as I know my options are wearing thin. I also trust them enormously to be honest with me about whatever the future may hold.
In the meantime, I don't feel horrible for the most part, I lay low, I read, I hang out with Gabe and a few friends and family and pray and wait and prepare for whatever comes...
Do not give up; the beginning is always the hardest.
-Fortune cookie (on our fridge)
What does recovery from 3 major surgeries in 8 months, some massive infections, one remaining lung and a large open cavity in my chest for 6 months look like? Recovery did not end when the surgery was over or even when I left the hospital...it has been an ongoing daily journey for the past 3 months, especially compounded by previous issues and many years of health conditions and treatments that complicate my situation. When people ask how I'm doing, I say I'm doing alright AND (sometimes say) I'm really good at "playing a healthy person".
While it would nice to just magically heal and move on, I
have to remember my body has been through a lot, my chest was reconstructed and I will never quite be the same again, coupled with still actively being treated for my original lung infection. Sometimes my mind needs to have some patience with my
body. My brain can be ready to go, go, go and do, do, do when my body just
cannot but it does do quite well! Or other times (not as often) my body is feeling more energy but my brain is tired.
I am doing many things to help the process such as
physical therapy (PT) (and have found an amazing integrative practitioner who
incorporates massage and yoga), trying a few new medicines, yoga,
walking, trying to eat more foods to support healing (winning 10 free
meals from a place with healthy to-go meals with a lot of healing protein was a
huge help, especially on days when I do not have a lot of energy) and trying to enjoy life until I work again. I try to fill my days with a balance of interactions/activities with people or things that enrich my life and downtime to recharge and refresh (but usually it's more top-heavy on the "activities").
has also been a time to address issues that have come up in the past
year that were "put on the back burner" with the lung issues front and
center. This, too, is part of my healing and trying to do all I can do to
feel the best I can. I have transferred to a new practitioner for some
issues and now have 5 main doctors, a specialized physical therapist and
a specialized massage therapist in my court. I feel like I have the
best "team" in place and so many amazing, skilled people helping me and I
am so grateful for all their time and expertise. With having previous chemotherapies that are known to cause heart damage (short and long term) and the strain that having one lung causes the heart, I recently had my heart tested. While it has some reduced function, it is still on the lower end of the "normal range" and does not require immediate attention. I'm off the hook for another year barring any other issues. Yay!
I can see a decrease in pain (evidenced by small things such as just a few weeks ago I was holding and supporting my whole arm with my other arm while taking long walks and now being able to walk "unaided") and decrease in overall bodily tightness. My intestinal tract is even slowly
starting to heal and my appetite is slowly returning. Things are
looking up! It takes looking at all the little improvements to realize
how far I have come and not get caught up in all the little day-to-day
frustrations! I have also managed to do well on 4 flights-to and from the big city (NY) and 2 (here and back) for a little beach time (FL) with another relaxing trip planned soon...I wear my colorful antimicrobial mask (see below) for flying and so far, it has kept me healthy.
Grateful for all these blessings and trying to live life to the fullest!!
My mask for flying and other "suspect" air conditions...