Tuesday, April 26, 2011

rainbows at midnight

This is not The Lion King, I don't feel like I need to learn about 'the circle of life' anymore, and being a grown-up isn't all it is cracked up to be.  Last week was a roller coaster and I am honestly surprised I have came out on the other end of it in one piece--and not even an ER visit!  We drove to Okanogan to see the family over the weekend--a car trip with a burnt boob, achy armpit, and a dog that can't handle a car ride can really be exhausting.

We lost my Grandpa Charlie this past week.  He passed in his sleep, it was very unexpected. Even typing that makes tears well up in my eyes so quickly I can't even blink them out.  I think, actually I know, I have one of the strongest families I have ever met. We bond over triumph and grief and we have had a lot of both for our lifespan.  When you are going through life and loss hits you, it is like a gut punch, one you can't recover from quickly...........you need to listen to your body and let it work its way out. 

I spent the weekend hearing stories from my Grandma, giving and receiving lots of hugs and spending time with family, many of whom I haven't seen since I was diagnosed last summer.  What a sad circumstance, but being surrounded by loved ones is the way to grieve.  My Grandma Lou is hands-down one of the strongest women I have ever met (I think she may be tied with my Mom).  Just being around her makes me appreciate my life in a way I haven't in a long time.  When you see someone grieve, really grieve (and take care of everyone else around her) you can't help but take a snapshot of your life and put things in perspective.

When I look at my Grandma, I see my mom.  I see my mom when she was grieving the unexpected loss of my Dad. I see the family, as I saw my sisters and I--just grasping for a thread to hold onto somewhere.  You just float through the day, not really grounded or connected to anything--just there; your minds way of protecting you, if you handled the loss all at once, you would break.  And we were all broken, but together we became whole--a different whole than before....but we put the pieces back together and became who we are today.

Scott and I also suffered our first loss that wasn't extended (meaning we were hit so hard together, as a couple....then just a ripple effect for those who know us).  We had to put our beagle, Archer, down.  In the perspective of life, this may seem small to some people, but to us....it was our world.  In that 'snapshot' of life, I mentioned earlier, this was a decision that was far from easy.  He was our first baby, our first 'investment' we made together, he was who were were 4 years ago, for awhile he was our everything, but he became unbelievably aggressive. We knew it was coming, but we kept putting it off (for years) until he attacked me in the backyard last week.  He would go from the sweetest thing, to something I didn't recognize, I became terrified, and after researching all our options, and many hours of handholding and tears, we made our decision.  We were lucky enough to find a wonderful vet to come to the house, we were able to hold Archer while he was sedated and then passed, it gave us some closure..........but it is gut-wrenching, and I feel heavy with guilt and sadness. 

Last week was filled with loss, this week is filled with over-reactive emotion.  I need to be careful, talking good stuff about Scott may go to his head.....but I couldn't have asked the world to send me a better partner.  Our personalities are so different, but our hearts seem to be the same.  He can keep me grounded when I feel like I am going to fly off the handle.....and through the loss of my Dad, my Grandpa, and Archer he was my rock.  He knows how I work, how I react, and how I grieve...he has a way of just making things better--I am lucky enough to have a constant support in life--the kind of rock I can't move, even when I feel like rolling him down a hill....

When people talk about 'old souls' I wonder if that happens when a short life is stuffed with so much 'life experience' that they are bursting.  That their bodies and minds take all that experience and weave a pattern of wisdom that settles internally?   Will I wake up one day and be an 'old soul?'  Will I be lucky enough to have all of this (all the shit that is going on around me, in the world, in my life, in the lives of my friends and family) make sense and be settled and grounded? Will I be able to create paths of wisdom for others to navigate during a time of crisis, of loss, of cancer, of life?  

I sure as hell hope so.

Sunday, April 17, 2011

put some aloe on it

I would like to thank everyone on Team Dori who participated in the Spokane Susan G. Komen 5K today.  It means so much to me, you are all incredible! Next year, I will be there with you.

Tomorrow will be Day 16 of radiation....almost half-way there.  I wish I could say that everything is rosy, but I am working with a burnt boob.  I have found that if I layer aloe on it after radiation, layers and layers, it doesn't hurt as bad the following morning.  And those layers eventually get dry and stringy.....pretty gross.  I no longer enjoying wearing shirts, and it isn't because I look good topless (working on it) but because it hurts SO much to wear a shirt.  The sleeve I am wearing to help prevent lymphedema stops right at the top of my arm, so it rubs my armpit and I have fluid that builds up in there--all of that ends up causing pain--so I am having to take pain medication to get through the day....and even with meds it is still pretty uncomfortable.  I am not too tired, I am sleeping-in more than before, but I haven't hit a wall of exhaustion. 

I feel somewhat useless when I lay in bed with aloe on my boob and the fan blowing on me.  I can't really do anything because the aloe/lotion mixture I have concocted on my boob smears all over my lymphedema sleeve, stomach...it spreads like chicken pox and leaves oily stains everywhere.  The weekends are such a welcomed break, I love looking at the clock at 3:30pm and NOT being at radiation, a sense of satisfaction. I had to stop using the treadmill (sports bras are not my friend right now, and no matter how still I try to keep my arm, I end up being in more pain when I am done--and I can't stop treadmill dancing........so my arm occasionally does a fist pump or a shimmy) so I am going to be using an exercise bike--I am going to continue with my commitment to be healthier and I refuse to let a little sunburn (feel the sarcasm?) stop me.

And I am hoarding aloe like it is gold.

Me: "Look at this blister!"
Scott: "Wow, you must have put your socks on wrong..."

Sunday, April 10, 2011

when it rains, it pours

Two weeks of radiation down, 3 1/2 to go...........

When I made my plan on how I was going to approach radiation I said I would blog when things were fresh.........rather than hash them out a bit and then piece something together.  Believe it or not, I usually don't feel my posts are too raw....I think they are edited. But in that process I usually end up having to be emotional, and caught up in whatever it is that I am processing, for too long.....so this time I am going to try just putting it out there, no processing....it's like a projectile vomit blog--it just happened.....

I won't be able to be pregnant. I won't be able to give birth. Mommas and babies are my life, literally my job, my passion, my cause.  And it was taken away from me.  I am having a hard time getting passed this, or processing this, and then I have weeks where I feel fine. 

I am steadfast in knowing that you don't have to give birth to be a mom, that families are created by a wonderful mix of love, unconditional love that doesn't have to be biological. That family members can be people who you chose to bring into your world.

I am not sure the root of this fear, this disappointment I feel in myself............how am I going to continue to work with women in the same capacity, eventually someone is going to ask how many children I have. What was my birth experience like? How did I work through postpartum depression? I won't have the answer they are looking for.  I have this inner urge to mother, to supply the unconditional love.....I just can't double the estrogen in my body, my cancer feeds on estrogen.........that would be a selfish decision on my part.  I won't have a baby and increase my chance of cancer......Scott and our new family doesn't deserve that.  So I feel lost, like I am swimming and swimming in the dark.......unable to see the shore and I am getting tired.  My oncologist says "roll the dice," that women my age are encouraged to "have their families" and then "have your ovaries removed"............but I don't feel that "rolling the dice" is the way to start a family.

I know there is a life plan that I fit into, but I am pretty fucking sick of not knowing what it is.  My life is full of amazing people and I am driven and encouraged by them. I would do anything for Scott, and though we haven't discussed it, I am so sorry that because he chose me for his life partner he has to deal with all my baggage...............and my biology.

I feel alone.  I feel jealous.  Jealousy will eat away at your being, at who you are......comparisons are pointless.  I know this, professionally I know this, and personally I have never been someone who gives a shit what people think.  But I find myself comparing myself to others like I have never done before.  I feel damaged and not up to par....just not measuring up.  I am getting my mind back after chemo, my chemo brain is slowly fading and I am finding myself having an internal conversation that I haven't had before. It is unbelievably frustrating.  You would think that I would feel triumphant---I went through hell and back and I am here in one piece........but instead I am picking apart those pieces with a negative eye.................ridiculous.  As a whole, I am too hard on myself.  I know that negativity breeds more negativity so I try to focus my attention on the positive, but now, more than ever, the negativity is sneaking in.

I know it began when I had to chose radiation or not.  I went a few steps backward, but I made an informed decision that Scott and I both agreed on.  We powered through, which is what we do.  We are a couple that plans, we want data, we want to know how our life will look, we thought we knew....then we were slammed with the cancer truck.  Then we refocused, then radiation.  And now that is my job--doing my best to get through radiation, taking care of myself, and working out the kinks in my brain that cancer created.  It's messy.

So I am a hot mess.............literally, my radiated boob and armpit are on fire.

Saturday, April 2, 2011

one week down....

Me & Scott--Radiation Day 1
One week of radiation down, 5 1/2 more to go.  Radiation has been something that I wasn't expecting....it makes me uncomfortable, I feel vulnerable and a bit humiliated.  I have heard from others that they enjoy the routine, that they bonded with the staff, and that they felt like they were fighting the cancer every day.  I don't, I haven't, and I would rather do almost anything else, literally.  I would get sick to my stomach the night before chemo, I was terrified, I didn't sleep, and I knew what was coming....pure hell.  But I did it and I felt supported throughout the process (for the most part) and it is behind me.  This is a different experience.  I show up the same time every day, and am greeted by the receptionist (who is wonderful and I enjoy her a lot). I then go and change into a robe and sit in the most unwelcoming ladies waiting room, I am then brought back into the room with the 6 foot thick walls.  In this room 'Dori' no longer exists--just the pin prick tattoos they put on my chest....they jiggle me around on a sheet while I lay, chest exposed, with my hands cradled above my head. I have to hold still and mostly the conversation continues on around me, as if I am not there.  After a few more adjustments I am done and put my robe back on and walk back to the changing room and leave.  Like a rat in a maze, but there is no cheese....

Drawings after Day 2--and you can see my lymphedema sleeve a bit too

I don't think it has anything to do with where I am receiving my treatment. The staff is friendly and I am sure that other women feel very comfortable with their treatments.  I just haven't found that place inside me that agrees with what is going on.  I work on my grounding meditation, I visualize happy shit and try to be okay with feeling like I am all alone in the room, but I haven't found the headspace yet. I feel like I have taken a step back in my recovery.....I am not in the same place mentally that I was before.  I just don't have the time to recover, because the next day I have to do it again............everyday at 3:30pm.

Today was my first day without radiation and I was still unable to really calm down.  I know that this is an adjustment period and I will get used to radiation and the routine, and I am sure if you were to talk to me at treatment 20 this would be a whole different conversation.  I didn't realize what it would take out of me mentally or physically...or at least I didn't expect it so quick. I just need to readjust my game plan--next week will be better....I will at least feel more prepared.

I have begun taking a nap for the hour prior to leaving for radiation--I am already a bit tired and that gives me relaxation time and the possibility of falling asleep if I need to.  On Thursday I woke up with chest pains and the room was spinning.  I was able to drive to radiation, but still felt a bit shaky and light headed.  When getting off the table after radiation the room was spinning and they had to help me a bit.  They then decided to take me in a wheel chair to the ER (where Scott was working) and check me in, because of the chest pain (and me being on Herceptin) they had to double check that everything was fine.  My heart was okay, they did a head CT and I was told that it came back abnormal, they said that it was either a tumor, a blood clot, or an infection, behind my right eye..........................wow.   My world stopped.  Scott and I broke into tears, and thank goodness for our wonderful nurse Maria--I don't know what I would have done without her hand on my shoulder to keep me grounded a bit.  Not only did everything stop, I started to panic..............a lot. 

I was sent for another head CT with contrast (I couldn't do a MRI because of my expander's) and we waited for the results.  My sisters came and we all waited.  Maria continued to be our support and there aren't enough words to thank her and to let her know what her being there meant to us.   The doctor brought in the results and she had me read them first.........it said that the image in the first scan was artifact and that there WAS NOTHING in my scan, it was clear.  My world stopped again.  I had just went from one of the worst feelings in the world to one of pure elation............and then exhaustion.   

I went home all doped up and mentally worn out.  Friday I had my Herceptin infusion (which really knocks me out) and then radiation.........it was a double-whammy.  And today I just tried to put myself back together.....not sure I did my best.  I snapped at Scott A LOT and felt like I was trying to catch up, but I was too tired to really do anything, and I was too tired to sleep.......I laid down for a nap and just tossed and turned.

I have been on a roller coaster the past few days and I am ready to get off.  My heart can't take any more, it hurts and I am tired.  I will work into a routine with the radiation, hell I have 5 1/2 more weeks to find one.....