Wednesday, January 25, 2012

I've been robbed!

There are some things that have been rolling around in my head like loose marbles for quite a while now and I need to get them out.

My life timeline
I knew that when I was diagnosed with stage IV cancer back in 2010 my life would be forever changed from that moment on.  I also knew that things weren't going to be in any small way predictable anymore.  I got diagnosed in my last quarter of my second masters degree at Antioch University in Seattle.  I had plans, big plans for my future.  For once I felt as if I was going to find my calling, my ideal career, my place in this world to make that "positive contribution to society" that I had been yearning for.  Instead it took me about 6 months to complete that last quarter.  Needless to say that at first I was still trying to adjust to my diagnosis and later I would find that I had to battle chemo brain, fatigue, nausea, pain, and doctors appointments to finally complete the rest.  Whew! That was finally done and degree is safely tucked away in my filing cabinet awaiting its new home in a frame on my wall with my other degrees.

drugs, drugs, drugs
That completed I watched as my finances shrank away to nothing.  I spent over $30K in one year on my own healthcare.  The ironic part about it all was that the chemotherapy and the pharmaceuticals were for the most part "free", covered by the state insurance I got lucky enough to receive.  The natural medicine (the IV's and supplements) were the things I paid for.  Just in case you don't know this insurance does NOT cover natural medicine.  They only cover the man made drugs that you take that might kill cancer but also kills all the good cells in your body as well.  I would take a pill to combat the side effects of chemotherapy, then take another pill to combat the side effects of the last pill, then another pill to combat those side effects.  There were many, many days I would take more than 80mg of oxycodone just to make my pain somewhat bearable.  The nurses said "that isn't much, you don't have to worry" but I was worried about the damage the drugs were doing to my healthy parts.  Don't get me wrong! Chemotherapy (or the combo of chemo with the natural) has done very well for me.  I just got to the point that I could not mentally function anymore from it and had to take a break.  Anyway, back to my point.  Bank account drained and now I am living on SSI and EBT and I am a far cry away from that career I worked so hard to place myself in.  Cancer stole that from me.  Perhaps that just means it wasn't supposed to happen that way after all and my calling is somewhere else in this world.  I still have trouble letting that go.

Pearl and my now sold kayak

The next big thing was the decision to get rid of my car.  My dream car.  I had wanted this car for so many years and I knew I would be driving it until it fell apart so I made certain to get it with all the bells and whistles.  I purchased a 2009 Subaru Outback a few years ago.  My intention was to be able to pay it off within a year or less.  Instead I found myself not being able to make my car payment (which was quite high) and making the trip to the dealer to sell it back to them.  Luckily I had paid enough on it to get out of it free and clear.  So with that I found a cheaper used Subaru sedan that only requires a $200/mo payment.  This may sound incredibly stupid and trivial to some of you out there but to me it was a very emotional experience.  I know it is just a car and it still takes me to the same places but to me it was more than that.  The car I lost (her name was Pearl) was the product of all of my hard work and effort.  It was hand picked by me and it was new so I knew I didn't have to worry about it needing to be fixed for a long time.  It was the product of my efforts.  It was something that I had strived for before my diagnosis and achieved, then just as quickly it was something that my condition, my cancer, had taken away from me.  Little by little things got plucked away. Yet another accomplishment that I still have some trouble letting go of.

My nasty apartment complex used to be
a hospital.  Kinda creepy huh?
Next came the living situation.  Since the SSI/EBT was barely paying my bills, I was no longer able to help out with the mortgage, utilities, groceries, etc.  This ultimately led to a lot of heated arguments between me and my boyfriend.  I knew he couldn't afford to do it all by himself.  I asked him if he thought it would be best for me to move into public housing and he thought it would.  Yet another thing taken from me, my home.  I am now living in a tiny 350sq/ft studio in a giant 14 story building with about 450 other people.  One of my neighbors is an alcoholic and another smokes constantly in his apartment (even though no smoking is allowed).  The smell and smoke waft throughout the hallways and before I put weather stripping around my door frame, into my apartment.  Not a very healthy atmosphere.  Oh, I cannot forget the very first time I had a friend over.  I came downstairs to meet her (you cannot get into my building unless you are a tenant) and as we walked into the building we encountered the Portland police arresting a large man who smelled strongly of weed.  Most likely a drug dealer.  As we arrived on my floor in the elevator we heard shouting and screaming coming from somewhere down the other wing of the building.  Thanks cancer.

I lost my mind.  Well I didn't so much lose it as it was stolen by cancer and chemotherapy.  Even though it has been nearly two months since my last chemo treatment I still constantly battle the fog that is a result of the treatments.  I am not so close to a mental breakdown as I was at the beginning of the year, but I still struggle with trying to concentrate on just about anything.  My attention span is just not there yet.  I easily get confused and frustrated at even the slightest things.  I cannot make a decision to save my life, so I just do nothing at all feeling hopeless sometimes often letting important things fall to the wayside because it only frustrates me and drives me to the edge to try to accomplish them bringing on yet another mini-meltdown.  I still constantly forget many things and still have trouble recalling events and finding the right words.  I will be in the middle of a sentence and just stop because I lost my train of thought and for the life of me forgot what I was talking about or going to say.  Then the person I was talking to tries to help by reminding me of what we were talking about but it only frustrates me more because I can't remember.  Thanks cancer.

I really would love to work, but if I do it has to be an awesome job with decent pay and benefits such as medical etc.  I cannot work a 40 hr week right now so part time would be a requirement.  I cannot foresee how well I will feel on any given day (although that is getting a little better) so having a set schedule wouldn't work well as I may need to call in sick or leave early or show up late from time to time.  If I worked part time my medical coverage from the state will get screwed up and my rent at my crappy studio would cost much more AND I would not get SSI or EBT (or I would get much less) so I am now stuck in a no win situation.  And just who would want to hire cancer girl who has so many needs?  For now I am going to volunteer to learn something new and to get my feet back underneath me slowly.  I HATE YOU CANCER!

Jeff & I at White Pass on a backcountry adventure in '09
The relationship with the man I fell in love with 8 months before my diagnosis has suffered greatly from cancer. Can you imagine finally finding the one you want to spend your life with just to find out 8 months later that they have extensive and aggressive stage IV cancer and the statistics all say that people with that certain type of cancer usually live less than a year? Then once you think you have a handle on all of that you have to deal with your loved one vomiting, writhing in pain, forgetting everything you have said or done recently, constantly having the same conversation over and over with them, dealing with the incredible mood swings that come from the combination of chemo and the trauma of being diagnosed in the first place. Suffice it to say that my relationship with my beloved has not been easy at all since D-day (diagnosis day). In the last year we have argued, miscommunicated, and misunderstood each other more often than not. We used to tell each other every day how lucky we felt that we had finally found each other. We would day dream about all of the things we were eager to do and experience together and spend hours talking about road trips and climbing or skiing trips or peaks we wanted to summit together. We don't do that much anymore. We hardly ever talk about anything that is emotional or involved or important. I think we are both just too raw and hurt from this whole ordeal. he needs time to heal as well. That's the thing about cancer. It doesn't only affect the one diagnosed, it affects everyone around them as well, especially those who care for or about them. It changes the person who has it, they will never be the same ever again. My therapist calls it "adjustment disorder" similar to "post traumatic stress disorder" only it has its own name. Much like anyone who goes through an extremely traumatic experience, the newly diagnosed cancer patient is broken, dismantled, and reconstructed. If they are lucky to live long enough they are somehow supposed to find their "new normal" in all of the rubble and chaos called their life that has crumbled to pieces around them like the debris from a tornado crashing down all around and you are having to watch so you don't get hit by a falling truck or boat that should have never, by all laws of nature, been in the sky in the first place. Much like picking up after a tornado the rebuilding process is slow and some things that used to be are no longer while some of them get rebuild even better than before. That's what we don't know, no one does really, which pieces get rebuilt and which ones don't. Only time will tell that.
Jeff and I at one of my early chemo treatments

 A blogger friend recently posted about "keeping the 'thief' away" in her post about a "typical" cancer diagnosis.  Her words resonated with me so much that it spurred me to post about those things that have been bothering me for so long.  After diagnosis you are in virtual, perpetual hell wondering what the scans will say, if your blood labs are sill looking decent, if all those other aches and pains are cancer, or just exactly what your day will hold for you.  I constantly struggle with these things as I am quite certain most other cancer patients/survivors do.  "Am I eating enough veggies?" "Did I remember to take my supplements today?" "Did I remember to order the ones I am out of?" "What will my next scan say?!" "When will I ever feel somewhat 'normal' again?" "Will I ever get my brain back?" "When will I ever be able to make my own living again?" "I wonder how many of my friends I have disappointed or pissed off by my flakiness?" "When will I ever be able to fully return to life again?" "When am I going to stop hurting and losing things?" I cannot expect anyone of my friends and family to understand what I feel physically and emotionally.  I know that they sympathize with me about my turmoils but they really do not understand.  So many times I have kept how horrible I have felt from those I love because I don't want them to worry about me needlessly.  I think cancer patients do that a lot, keep things bottled up inside.  There are support groups out there, but I really don't want to sit and commiserate with others about how shitty we feel, dwelling on our diagnoses and blaming cancer for everything wrong in our lives.  I am tired of cancer being the biggest thing in my life.  I am ready to move on but moving on is the hardest part.  How can one move on when they are so stuck in the place that cancer left them?  Little by little I guess, every day bringing something different, sometimes good, sometimes bad.

My super conspicuous port sticks out
like a sore thumb
I long for a new home, away from druggies, alcoholics, police arrests, people smoking in the apartment next to me, free bread on wednesdays, conflict resolution classes, signs in the laundry room telling you to not spread bed bugs (WTF!) and government housing in an old scary hospital building.  The only other time I have lived in a place so small was when I was able to walk out my front door and be in the mountains.  It isn't the small size of my apartment that I have trouble with.  It is the fact that when I leave my front door I am accosted by cigarette smoke, mental cases, drug dealers, and other undesirable things.   I make the trip from my front door to my car as quickly as possible trying to keep my eyes down and my hat pulled low over my head.  Maybe I'm stuck up, I don't know, but I really don't care to make any friends in my building.  I don't even want to go home to be alone in my tiny place where I am left to only my thoughts.

I need to do some more healing before I will be able to make my plans happen.  That is another thing that is constantly on my mind....when, WHEN is that going to happen?  How can one plan for something when everything is so uncertain and up in the air?  How can you get off of government assistance when you cannot get a job? What exactly is my plan anyway?

These are the things bouncing around in my head like a pinball threatening to make my brain tilt.  Every great once and a while they don't seem quite so bad, but they are constantly nagging at me every second of every day as I constantly contemplate "What am I going to do now?"

Right now I am going for a walk. Then I am going to spend some time snuggling with my kitty girl while I avoid doing some important things that I really need to do but only end up frustrating me and turning my brain into mush.

There.  Ahhhhh.....
I had to get that off my chest.  I can see the silver lining.  Right now I am just waiting for the clouds to part and the fog to lift.



  1. Hugs and more hugs. Thanks for sharing all of this!!!

    XOXOXOX Melissa

  2. I don't have cancer. I may not have the right to give you a hug....but I can tell you that this post made me feel incredibly lucky to have what I have, and want to stop whining for what I do not...Thank you

  3. I'm not sure I have ever read a more succinct post about the cancer experience before. Thank you for writing it. Thank you for sharing it. It will help people with cancer to know they are not alone in what they are feeling. And it will help people without cancer to better understand those with that have it. Win-win!

    Awesome post. Amazing story. You rock!

  4. Well, I guess you know my thoughts on this topic! Cancer is a very busy "thief." I'm sorry for all that has been stolen from you. I think it's important that you shared about this so openly. I thank you for that. Hoping the clouds part and the fog lifts soon. And thank you for the link to my post.

  5. Melissa,
    I can feel your hugs from here! :)

  6. Cathy,
    I will gladly accept your hug and send one back to you! It is easy to forget that we are all blessed every moment of every day. I sometimes forget it too. I try to take time to remember the reasons why I am so blessed and hold them close to me in gratitude.
    Many blessings to you!

  7. Renn,
    Thank you so much for your kind words. I can only hope that I am somehow helping others out there. It makes me feel so good to know that I am able to help someone in times of need.
    Much love and many blessings to you!

  8. Nancy,
    It was your post that prompted me to put these things into words. I have been thinking about this for a very long time and it felt good to finally get it out. As for as the link to your post...anytime! Your blog is always so great, I am happy to share the love with others.
    Healthy blessings to you my cyber friend!