A Blog written by Cameron Von St. James...from the perspective of a Caregiver

This is an article written by Cameron Von St James who's wife was diagnosed with mesothelioma and he writes about his experience from a caregiver's perspective.  Wanted to share his experience in hopes that someone who may be in a similar circumstance knows that they are not alone.

If you want to read more from Cameron, check out his blog at mesothelioma.com/blog/authors/cameron/

Thanks Cameron for contacting me and sharing your story.  Both you and your wife are an inspiration!!! :)

Dealing With My Wife's Cancer

Cancer is a word that has the ability to strike fear into even the bravest people.  It was a word I hoped I would never have to hear in connection with me or my wife Heather, and I certainly didn't think it would invade our lives in our mid-30s.  However, cancer can strike at any time, and it struck us on November 21, 2005, just three months after the birth of our daughter Lily, when Heather was diagnosed with mesothelioma, a rare and extremely deadly form.  The bliss of new parenthood gave way to the fear that I would have to raise our daughter alone.

I was terrified, to say the least, but I couldn't let myself be overwhelmed by my fears.  I needed to stay strong for Heather, who had to leave her full-time job and devote herself to intrusive mesothelioma surgery, followed by a lengthy process of harsh chemo and radiation treatments.  She had to undergo all of the physical trauma, but the experience drained me as well.  I needed to find a way to balance being there for her with my job, where I had to cut back on my hours despite fears that we would not be able to keep our heads above water financially.  Some days, that was very difficult.

The funny thing about cancer, though, is that it shows you just how much you can handle if you don't have any choice.  As we found a new normal, we learned how to manage our time more effectively, and I was able to get much more done in a day than I would have thought possible.  What's more, I learned how to swallow my pride and take help from people who were all too happy to give it.  I never was one to accept charity from others, but the fact of the matter is that when you are dealing with cancer, you can use all of the help you can get.  We needed people to take care of the baby, people to provide meals, people to just come in and spend a little time with Heather on days when I couldn't.  So many people stepped up to the plate, and I don't know what we would've done without them.  I'm so grateful to them all.

Heather went through an incredible ordeal, and I was so proud of the courage she showed in facing each challenge head-on.  She first got her mesothelioma diagnosis seven years ago, and she doesn't have a trace of cancer in her now.  Against the odds, she fought and recovered.  You may be shocked at your own strength when that's what you have to rely on to get better.

This struggle also held valuable lessons for me in other areas of my life, and after our lives finally returned to normal, I decided to take the plunge and go back to school.  I used the time management skills that I developed during those days of running back and forth to treatments, and I balanced work and school so well that I ultimately graduated as one of the top students in my class.  Now I can do something that I love while providing for my family, all the while knowing that I need to cherish every moment with them because life can change very quickly.  Don't give up on your dreams; look adversity in the eye and find out just how much you can accomplish.

A Light in the Darkness

Its been a few weeks since my last posting because I just haven't had the time to sit down and put my thoughts and feelings into the keyboard.  I decided that I needed to take a moment and allow myself to breathe and to think and to feel what I'm feeling.  Blogging has become one of the best therapeutic tools for me.

But over these past few weeks and the "chaotic"ness of my life, I have been experiencing so many emotions. I've been asking so many questions.  I've been trying to discover exactly who I am.  At times, I think I have it figured out and other days I'm thinking "what the hell are you doing?".

While I was traveling in the car yesterday, I was speaking with my mom about some of the things that were going through my mind.  And part of that was that "guilty" feeling again.  It always seems to creep up.  But that "guilty" feeling isn't just about the cancer, its about the "aftermath" of the cancer.  Its about what having cancer has left behind.  And I'm realizing its quite an extensive amount of emotions and depletion of energy.  I even have noticed with my blogging the mix of emotions from one blog to the next.  There are a few that I'm upbeat and positive and embracing all I have around me and the next few are about feeling sad, they are about worrying, being confused or just plain scared.

I said to my mom that while I was fighting cancer, I really never gave much thought to the "after" part.  I was thinking of the present and getting through each hour and each day.  I remember my doctor telling me that I need to remain active and not just lie around in bed or sit in the chair all day.  At the time, I thought it was to maintain my strength to fight, and I'm sure that was part of it.  But, now, I'm learning that just because the cancer has gone away doesn't mean my mind or body are fully recovered.  That was my own misconception.  I thought that things would return mostly back to normal.  Boy, was I ever wrong.

A week or so ago, I even spoke to one of my best friends about having those good days, and then being knocked back a few steps.  She had asked do I think it may be like a self-fulfilling thing, where I'm subconsciously allowing those set backs.  I thought about that and thought "well maybe" but then just yesterday I thought to myself, "no, I truly don't think that".  Because, when I am having those good days and pushing forward I feel so happy, so alive and so free.  I don't want to lose what I'm gaining.  It's like my mind and body are battling with each other.  I don't want those setbacks.  I want to get close to where I once was before.

I'm just trying to make sense of my situation.  I try to do this by speaking with or learning about other people who have had this similar experience.  I discovered that even knowing that each person's experience is different I couldn't help but compare my situation to the situation of others.  Then I become angry, not because they are doing so well, but because I'm not where they are.  There are some that are 6 months to 2 years post transplant who are back to work, who are really active by staying fit with some form of exercise and even, running marathons. And I'm so happy that they are able to do that but why can't I?  With my recent schedule, I'm beginning to weaken and tire really easily.  I'm having difficulty trying to keep up. When I feel that weakening, I tell myself no and keep pushing.  I can be so stubborn that I do not want that weakness to win, so I keep pushing until I can't push anymore.  Then I become angry because I finally have to give in, allow that rest.

Before cancer, I had a full-time career.  During that time, I had always thought it would be nice to stay at home and be with the kids.  But I'm finding, I need that career.  I need to feel as though I'm contributing something to the family.  I like having that independent career-minded feeling.  But, I seriously question whether I can handle a full-time job.  One of the reasons is my memory.  I'm almost 2 1/2 years post-transplant and my memory is still horrible.  I try everything I can to remember things.  I either write it down, text a note in my phone, keep a digital calendar to sync between my phone and computer.  But sometimes that doesn't even help.  It can be so frustrating.  If by working full-time and something escapes my memory it will show that I'm incapable of performing the job and my work ethic is very important to me.  Secondly, a full-time job entails a lot of mental and physical energy which could be difficult because I get tired so easily.  Currently, I work for 4 -6 hours a week for a friend of mine at her fitness establishment which a thoroughly enjoy.  And, I also watch a baby for another good friend of mine.  I look forward to all of those days. But, I'm discovering after this past week, thats all I can really handle.  I have been going like the "Engergizer Bunny" and it has definitely caught up to me. I was so exhausted the other night, I didn't even change my clothes when I crawled into bed.  Then when I got up the next morning, I had that "nauseous" feeling.  It was the same "nauseous" feeling that was identified as GVHD.  (Graft vs Host, my body fighting the donor cells).  I hadn't felt that nauseous feeling in quite awhile.  Yes, I may have had that over the winter but that was mostly due to being sick with whatever flu was going around.  This definitely felt different.  This felt exactly the way I felt after transplant.  It scared me.  And, for someone that has experienced relapse, I was really frightened.  Thankfully, my very supportive husband began seeing my fear and stress, and helped me a lot with some of the things I needed to do.  So I'm beginning to feel a little better.

I guess I just keeping thinking that even though I have experienced some very "dark" times, there is much "light" in the darkness to be seen.  That's what keeps me going.  Its much about coping with those dark times, it's about processing those dark times and it's about trying to move forward to that "light".  And that each person's experience is unique only to them.  I just need to keep telling myself, "I can't compare to what is unique to someone else...I need to only focus on my own uniqueness and my journey".  I need to quit looking at my setbacks as being "failures" but as I way to strengthen myself to a closer version (physically and mentally) of the person I was before cancer.

Image Source: http://www.searchquotes.com/sof/images/picture_quotes/65932_20130218_111120_20.jpg

Summer Is On It's Way

Right now Easter has passed and even though we have had some chilly weather and a few snow showers, Summer is on it's way!!!  I'm looking forward to this Summer : )

It's that time to really remember the precautions that need to be taken to protect myself from any possible GVHD flare ups.

1. Sunscreen is an absolute must to protect my skin from any GVHD flare up or skin cancer

2. Sunglasses to protect and prevent "dry eye" or cataracts

3. Appropriate clothing with long sleeves, hats, etc.

4. And just in case I'm somewhere where there is little access to shade...I need to make sure to carry or have my portable shade (a UVA protected umbrella)

I have all of my supplies and I'm ready for the joys of summer!!!  I'm looking forward to hanging out with my family and friends!!!  Baseball games!!!  Picnics!!!  Hanging out poolside with the kids!!!  Campfires!!!  Taking Walks!!!  Bike Rides!!!  And sometimes, even the rain and thunderstorms make Summer complete.

These are just a few of the many things to look forward to and I can't wait!!! : )

I hope ALL of you have a Happy and Wonderful Summer!!!  Soak it Up!!!

Emotions

I had a pretty "heavy" phone conversation with someone this morning.  She had lost a piece of herself and was having an emotional day.  She was crying and frustrated with her situation and feeling "helpless".  There were things around her that she wanted to take care of but due to her circumstances she was unable to complete those tasks.  I allowed her to express her fears, her sadness and even her anger about her situation.      She felt as though she is useless.  At that moment, I had to share my secret with her.  Even though her and I share two totally different circumstances, we still share a "loss".  And even though our "losses" are different, we experience the same emotions.

In both our situations, we both had a loss of control as to our treatment and what the outcome of that treatment could or may be.  Death was a possibility for both of us.  So when faced with the whispers of death and we really had no control other than what we were thinking and feeling, I told her, that is her gift.  No one can take that from her.  She can choose how to think and how to feel about her situation.  I offered her advice in the mix of emotions that she is or has been feeling.  Basically, I gave her permission to think and feel and react the way she needs to, in order to cope and heal so she can begin moving forward.

During my treatments before and after relapse, and even after transplant, it seemed that the only thing I had control over were my thoughts and feelings.  I know many of you worried about me and thought maybe I was becoming depressed or withdrawing.  I want to let you know that "yes, I probably was".  But it wasn't anything to be scared about.  I had a few people say to me that I'm being "too quiet" or "not speaking about whats going through my mind".  But how could I speak of those things when I truly didn't know what I was feeling.  I would go from being happy, to extremely sad or frustratingly angry, all within seconds, minutes, hours, or even days.

Many times I thought  I'm dying!!!  I have Cancer!!!  It went away and now it's back!!!  My children may lose their mother!!!  My husband may become a widow!!!  Will my death be painful, will I suffer or will I go into a deep sleep???  There are so many thoughts that go through your mind that I needed and wanted to own what I was feeling.

So this morning, I offered those same thoughts and advice to the person I was speaking to.  I told her if she wants to be angry, then be angry.  If she wants to cry, then do it.  If she is afraid then show your fear. Allow yourself to feel what you want to feel, but once you do that then you need to move on, begin moving forward.  I also told her that she will go through cycles and that is ok.  As long as the goal is to "keep moving forward".  My goal is to do just that...keep moving forward.  I may still have one of those"emotional" days where I'm sad, angry or afraid but I just need to remain focused and keep moving forward.

UPMC Shadyside 7West...Thank You!!!

I missed this yesterday and wasn't aware until I saw it on FB this morning.  One of the things I have learned through out my journey post-transplant that when you are grateful for something make sure you say it out loud.  You don't hear "thank you" very much these days.  In my previous posts, I have offered my "thanks" to my family, friends, acquaintances, and even strangers, who provided support throughout this life-altering ordeal.  I realized this morning that I may have forgotten to include the doctors and the clinic/hospital staff that offered their support.

On the day I was told I had Leukemia, the doctor from my hometown told me that I would be immediately going to Pittsburgh the next day.  I was also told that I could be there for a month or more in the hospital, and isolated and protected from any possible germs, etc.  My life and my family's life was completely turned upside down.

The following day on the trip to Pittsburgh, I kept thinking how scared I was of the unknown and how I was to be isolated and secluded.  The most traumatizing moment of that day was the bone marrow biopsy that was performed without any medications.  I don't have a very high pain tolerance and I'm very in tune with my body, so for me it was excruciating not only because of the pain, but it was traumatizing because this was just the beginning or ending of my life.  To this day, due to that traumatizing event, I need medication to calm me in order to perform the procedure.  I was angry with the doctor who performed the procedure and didn't understand why they would put a human being through such torture.  But later, I found that it wasn't that they wanted to torture me, but they needed me to be aware and mentally present when discussing what was going to take place from that day forward.  At the time, I was quite angry but now I understand.  And, ironically, the doctor that performed that biopsy is the one I have requested for all biopsies.

From that day forward, the staff was remarkable.  They truly showed their compassionate side and tried to make not only me, but my family, as comfortable as we could be during that most stressful time.  They really "bent over backwards" to accommodate my needs and my family needs.  They were empathetic and understood the stress we were under and didn't want to add to that.  Any time, I "buzzed" for the nurses, I hardly felt like a nuisance.  I very rarely was questioned as to my requests and they tried within their power to make me (and my family) as comfortable as possible.

The staff became a part of our family.  We developed close relationships with some of those people and I am even friends with some of them on FB.  

Even though having Cancer and going through chemotherapy treatments was sometimes a harrowing experience, the knowledge of knowing that the staff truly cared and supported us, helped gave me strength to fight the disease.

I stated in a previous post that some of my closest friends were my biggest cheerleaders, and they were, but the UPMC Shadyside staff on 7 West were also cheering me on and giving me the motivation not to give up.

So I dedicate today's blog to the UPMC Shadyside Staff (7West) (from the doctors, physician assistants, nurses, etc)...Thank you so much for ALL OF YOUR EMPATHY...PATIENCE...and SUPPORT!!!  

Finding My Donor...Hooray!!!!

I'm so excited to report that I received information regarding my donor.  I'm so excited and can't wait to communicate with her.  This is so exciting!!!  I finally have a name..."Andrea W".  I even tried to see if I could find her on FB.

I can't even express in words the feelings that I have...Elation...Euphoria...Excitement, is just a few that come to mind and so many more I can't write all of them down.

I will keep you posted as to this new "friendship/relationship".  This is another step in my journey in which feels more complete and less alone.  Just having a her "name" feels less strange.  She was always a mystery and sometimes it didn't seem real.  But now, actually knowing, that "yes, she is out there...living and breathing...who selflessly gave a part of herself to allow me this Gift of Life".  It makes it "so real".

I'm hoping that there will be no language barrier.  I'm hoping she is familiar with the American English language.  Even though I took "German" as a second language in high school, the only thing I remember is how to count to ten and how to say when my birthday is.  Haha :-)

I will report back on this new part of my journey!!!

Where Is My "Hat"...My Protection and Shield

Oh No!!!  Where did it go?  Did someone take it by mistake?  I know I wouldn't just lay it somewhere and forget about it.  I need it!!!  I have to have it just 'in case' something comes up where I need to wear it.  My heart is pounding, my throat becomes tight, my nose starts tingling and the tears begin to form.  I'm thinking to myself, "I can't believe your actually having a panic attack over losing a stupid gray dull hat"!!!  I go outside, in the dark, to the vehicle to look inside.  I step close to the truck and I notice directly below the door a dark spot in the snow.  I bend over and get close and there it is, my "hat".  I have such a sense of relief when I see it lying there in the snow.

I still can't believe the reaction I had to the thought of losing this damn hat.  My husband, the kids and I went out to camp today for a birthday party for the son and daughter of two really close friends.  There still is a lot of snow on the mountain top and even though I took the time to try and style my hair, I still had my dull gray hat with me, in my purse.  It goes with me everywhere when I venture out without it on.  I always need to have it as a back up, especially during the winter, because my head gets so cold, so easily.  My hair is so thin and even though its thickening up some, there is still much of my scalp to be seen.  And because of not having much to cover my head, I get cold quite quickly.  At least this is what I tell myself, which really is true, but I definitely realized tonight that it is only the partial truth.

My "hat" has become my security.  It has become a form of protection, almost like I'm invisible or more normal.  Some would think, how would wearing a winter hat make you feel more normal when most people hardly wear hats all the time like that?  And yes, normally I probably would agree with you but for me it does make me feel more normal and less self-conscious.

I really thought I was moving forward with my outward appearance but now I'm realizing I'm just lying to myself.  I am still having a difficult time with these outward changes.  Some people say that they don't see that much of a difference, even though my hair may be darker and I'm wearing glasses, many people still see the same person.  But for me, I still see a total stranger in the mirror.  It has become quite difficult for me and I realize I have been using my "hat" as a shield.  Maybe in some weird way, if I wear the hat, I'm covering what is so different about me and its easier to imagine the "old" Dee before cancer or relapse.  When I am not wearing the hat, I feel so exposed and so vulnerable.  Is this normal or am I literally going crazy?

I am very thankful that I'm still alive but why is this part so difficult for me to get through?  Is there anyone else out there that has been through something so life-altering which has affected your appearance that you may feel the same way?  If its not the hair, its the face for someone, or some other part of your body?  Why can't I get past this?  Some days I begin to feel good about the outward changes and I begin to accept them and then other days, I'm grabbing for that "hat", or that shield.

I need to learn to love me for who I am now, and after tonight, when I couldn't find my "hat" and nearly had a full-blown panic attack, I knew this attachment was not healthy.  I will try my best to take the steps to fully embrace this new version of me.  The steps my be small at times, and I may go in circles at times, but all I ask is for patience.  Patience within myself, and the patience of others around me.  I guess this is just part of the journey with learning to cope and heal.  I promise I will get there.  I want to be comfortable in my own skin, like I was before, it's just going to take a bit more time.

(Illustration from "I Want My Hat Back" by Jon Klassen)