After a few really tough weeks, lots of discussions with my doctors, therapist and my cancer survivor group, I have decided to stop treatment. These last few weeks of what they call the “maintenance” phase has just been brutal. While my liver stopped reacting so badly, the cumulative effects of the medicine began to take hold and I started to feel what I now know was depression. While I had been active, and optimistic all throughout the outpatient treatment and surgeries, I suddenly began to feel fatigued, tearful, fearful, unable to eat, and completely unmotivated. It was debilitating. For anyone who may actually suffer with depression for longer periods of time, my heart goes out to you, as I have now felt how physically taxing it can be.  Depression is a real side effect of the Interferon for about 60% of those taking it, which they feel they can balance with antidepressants; I felt that for my particular situation this was not the best path. In my case, they feel that there is only a slim chance that I was not already cured of cancer after the surgery, in order to better those odds I chose Interferon, which would increase my chance of not having any recurrence by 10%, which to me was worth starting Interferon. However, that increase is statistically attributed to the month long intensive outpatient therapy, which I have already received. They do not have any statistics to prove that the year of low dosage Interferon makes any difference on recurrence. 

            That being said, I evaluated my life, and what I want out of the next year of my life. And I decided that the idea of taking a drug that is meant to improve your immune system but also causes depression and fatigue (which harm the immune system) seemed counterproductive. So instead, I woke up this morning bounced on my rebounder, had a vitamin smoothie, and reasserted that I have a path I have chosen to devote myself to  - 1) BELIEVE I AM CURED OF CANCER. 2) Believe that continuing a cancer free existence is completely dependent on my living as close to a cancer free lifestyle as possible (this will be a constantly changing goal but includes strengthening my diet, my body, and my spirit) and last but not least 3) Eliminate the clutter in my life, both physically, mentally and emotionally. I accept that I am a person that is more easily swayed by negative, and I accept that this is a very dangerous way to live, and also affects people around me badly. 

            So these are my resolutions. Those of you that know me well know that I am prone to short lived ambitions. I make great mountains of plans, then sit back to glow in the glory of my good intentions, and suddenly shrink into the darkness that surrounds the sudden realization that I am terrified of mountains. So instead, I have decided to build molehills.  Small, easily manageable goals that I can conquer and take pride in completing. Even still, molehills can be challenging, so my first promise to myself is to continue to reach out to my cancer support group, Survivors By the Sea. They have been absolutely amazing at bringing company into my dark self-pitying grief. They share their struggles with me, and understand mine. It is going to be a very necessary part of my continuing recovery to share with, exercise with, and help support the other women in my group. After getting the support of my doctors that it is their opinion that my decision to end this phase of treatment will have no adverse effect on my chances of recurrence, I am fully comfortable with my decision.

            So, onward we go! One day before turning 28, birthdays will never feel the same. I will never be able to be one of those women who notices the crows feet dancing around her eyes and curses and moans about the embarrassing impending birthday. I will be the woman who looks into the mirror and notices those crows feet dancing around her eyes, and cry, for seeing what quite possibly could be the most beautiful display of artistry a woman could be shown, the gift of growing older, and having been allowed life.  I can’t think of anything more sad in the world, then having to bury someone you love who had not enough time to witness the beautiful dance of crows feet around their eyes.  And when I lie on my bed and touch the scars that snake their way around my thigh, and brush my fingertips along the skin that no longer feels the brush, some days tears will fall. Some days I will lay in bed for hours, rubbing these scars, or pouring over my various other moles that could one day become confused or misused and turn against me as this one did.  But the tears will pour, and through every tear and painful touch, will come the feeling of joy in knowing that I am still here, taking a moment to rub my skin, remind myself what is I’m blessedly wrapped in.  And I think how sad it is that so many women, much less younger woman may miss this whole experience. It is a realization of self, the intricate lines on your skin.  After my mom passed, I was lying in the sun and pressed a part of my leg together, and I realized that she and I had the exact same lines in our skin. And I felt closer to her, it was a piece of here I could see in me. So many of us struggle with who we are, but we ask this question from a possessive position.  We are beautifully intricate workings of outer image, inner pieces, and soul, which are meant to work together, to create us in the most beautiful masterpiece. Far too often it is not in this simple plan we see ourselves and so we make modifications, pluck here, and shape our lines here, darken our shell there, and that is where the confusion starts. We need to see ourselves, clearly, and with love.

         So now, coming into my 28th year, I am thankful beyond anything I’ve felt. To be able to stare out at my bedroom, in the condo near the ocean that I own. To be able to step outside and put my feet in the ocean, and speak to my mother and feel her near.  For my daddy, who I truly believe would cross oceans for me, although a few states is enough. My brother, who takes the time from within his own battles to put me first in his mind. And to be blessed with the comfort, wisdom and care of such wonderful Grandparents. And for all the aunts, uncles, cousins (and baby cousins) and amazing people who have come into their lives to help balance them, and by extension, us! I am so, so thankful.  I will continue to rely on all of you for the support, prayers, love and honesty you have all showed me during this time, to move forward, and embrace this life that was so graciously given to me. 

            But for you, the amazing people in my life, I think about you often. There are pieces of all of you around my home, and most importantly around my mind. I wish nothing but love, happiness and strength for each of you. That is my birthday thanks to you all, thank you for making me who I am, and helping me to get here, through whatever trials and tribulations. I love you all!!!!

If you are a child of loss, you feel its claws rising from the depths which you had buried it.  Feel them groping around your emotions, and you feel violated. Angered at the insight of reality. The days after my diagnosis, and pathologies felt like the days after my mom’s death.  You wake from sleep (permitting no nightmares), and for those few brief moments before your eyes fully part to see the light, your reality hasn’t dawned. There is a place of grace here, floating between your dreams and the smothering news that is about to come crashing through your cerebral peace. Daydreams are no longer idol gifts of the mind, they are demanded and begged for, pleading to cloak the pain of what you can not run away from.

I’ve moved past the horror of waking. My reality now doesn’t seem so dim. I have been reading a book called “Finding Hope When Life’s Not Fair”.  While based strongly on the bible, the author has given me a lot of other things to think about.  Like balance, in an entirely worldly sense.  After watching her husband battle a useless fight with chemo, she stated that if the western medicine world would put themselves aside enough to come together with the alternative therapy world, the results could be amazing.  That is my plan. Going forward with the Interferon (which is not really chemo, it does not poison the body like chemo) I believe that it is imperative that I learn to keep in place methods of supercharging my immune system permanently, coupled with detoxifying my life.  I recently read that both the Aveeno and Johnsons Lavender baby baths that I use frequently have traces of various carcinogens and formaldehyde in them at “FDA approved” levels. It amazes me the way safety can be bought, and I’m going to have to reevaluate all the things I use in my life.

Another story that has come up today that bothers me is the story of  Daniel Hauser, a 13 year old boy who is on the run with his mother, running from the state who is seeking to put him in foster care because they feel his mother is unfit for not forcing him to undergo chemotherapy. It came to my attention because they are trying to link him to a man from Massachusetts who also ran away when he was a teenager being forced to undergo chemotherapy. This man Billy Best felt as a teen, that the chemo was killing him, so he ran away until his parents agreed not to force him to go through more chemo. Long story short, he did his research, picked an alternative method, and is living healthy and cancer free to this day. If there is nothing else that I have gathered from this short battle I have been on, is that your treatment is nothing without your commitment, true belief, and faith in its ability to heal you. If you believe that something is killing you, medicinal community be-damned, it will kill you. If you believe in a treatment that is based on life, and the use of organic life-filled methods to heal, they can heal you. But it is absurd that the court system that is at times unable or unwilling to step in to save a child from an abusive parent for sake of violating a parents right to do what’s best for their child, they can force a child who is already grappling with an unfair world, and take their rights away from them to make a decision their body tells them is right. I can’t imagine being on a treatment that I felt in my body was killing me, and being ripped away from my parents to be forced to continue it. All on the assurances that western medicine is always the best path, right or wrong.

I am trying, every day to change my positivism. I am reading several different books, a few pages at a time, on faith, on the power of thought, The Secret. And it is a battle. It is a battle I have been waging for a very long while. I have a cacophonous mind, sometimes able to pick out a random note at a time, but never able to truly sit silent and listen to myself.  How am I supposed to know what I am telling myself, and what God might be telling me if I drown it out in fear of the honesty I know I’ll hear? Someone told me today that people don’t change. And I won’t accept that. People can change, but the change has to be from the truth that one finally listens to when silence of the mind is achieved.  Any other change is just an adjustment, forced by an outside need, which is not as likely to stick.

“We need to find God, and he cannot be found in noise and restlessness. God is the friend of silence. See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.” – Mother Teresa

And so, I’m trying to learn to love the silence, and not always look for a distraction.

]]> http://kathysdaughter.org/uncategorized/uncertain-hope-is-always-better-than-hopeless-certainty-unkown/feed/ 1 http://kathysdaughter.org/uncategorized/%e2%80%9cmother-love-is-the-fuel-that-enables-a-normal-human-being-to-do-the-impossible%e2%80%9d-marion-c-garretty/ http://kathysdaughter.org/uncategorized/%e2%80%9cmother-love-is-the-fuel-that-enables-a-normal-human-being-to-do-the-impossible%e2%80%9d-marion-c-garretty/#comments Mon, 11 May 2009 16:37:41 +0000 http://kathysdaughter.org/?p=70

I remember our last Mother’s Day. I was living in Boston for an internship, but had gone to New York for the weekend. I scrambled around to put a card together, along with a book of cute mother/child animals, and wrote something about how much I missed her, it had been a month and a half, the longest I had ever gone without seeing her. It’s now been about 6 and a half years.

I celebrated Mother’s Day today by remembering what a blessing it was to have her in my life, how well she molded me, and how much I lean on her during this time. I walked along the beach (almost to the end, which means probably almost a mile, yay!), looked at the ocean, and thanked God for the blessings in my life, and the strength of my family, and all the mothers in my family that make that family so strong.

Thinking of her, the most amazing woman I ever have known, with all my love. Happy Mother’s Day Momma.

I spent the day today going through all the paperwork I’ve been neglecting, for months. I’m trying to get to all the things that “can wait”, so that all I have to do while in treatment is focus on my healing, and keeping my faith alive.  I had the wonderful news on Thursday that the pathology from my latest surgery came back clean, and that they feel they have removed all the cancer. I still will have a cat scan before the beginning of the Interferon treatment to check the rest of my body for any tumor growth, but since the cells they found in the one lymph node were microscopic, I am going to continue to have faith that it was caught early enough, before any other cells escaped.

I’m now sitting comfortably in my bed watching “Everybody Loves Raymond” thanks to my daddy (gave me a tv, and installed it in my room), who cares so much about me that he will fly up here to be with me at any time I need him, and still stand by me when I am at my meanest, when my fear turns me into a ball of fury and frustration, and I become a woman that I am amazed anyone could still love. And there he is, calm, caring, still willing to move mountains for me.  And I thank God for him, for everything he has gotten me through, and for getting me through this.

So Boston Legal is on now, and I am laying in bed, kitties piled on top of me, and I still love this show. So I have a Dr. Appointment tomorrow, hoping for drain/staples out, as I think it will really help with my mobility, and getting my muscle function back.

Update soon.

So mid-cleaning, I am limping around with feather duster in hand when all of a sudden all the fire alarms in my condo start screaming, which was especially scary since no one was cooking, and the main alarm not only makes a drum piercing screech, but also yells in a calm voice strangely similar to the GPS girl, “FIRE, FIRE, FIRE!”. So, I came hobbling out of my room as fast as my ace wrapped, drain dangling leg could propel me and started screaming at Jamaica to help me grab the cats and get outside. My dad was at the store with the car, and I own only one cat carrier, so in my mind I was picturing dumping his suitcase, tackling the kitties and having Jamaica sit on the suitcase while I zip them in, then finding someway that I could ride on Jamaica’s back down the stairs in our underwear, holding the suitcase full of kitties outside to safety. Luckily, my much wiser cousin stuck her head out in the hallway and discovered that no other alarms were going off, and it was just our apartment. So before dumping daddy’s suitcase, I decided to call the building manager and asked him why all my alarms would be going off with no cooking or candles or other smoking device going off. Being that there have been a good amount of issues with my place since purchase, my tone was rather irritated, especially in light of his bewilderment.  So we started knocking off the possible causes. He said batteries…couldn’t be, all five were going off at the same time.  Testing?….also nope.  Last but not least, sometimes LARGE builds up of DUST can cause them to go off…oops.

So as my dad (who made it home just in time for the chaos) was frantically ripping down the alarms to turn them off, the feather duster dropped from my hand, along with the irate tone in my voice, as I explained to my building manager that I had decided to do a little Spring 2008 cleaning, so it must have been the toxic cloud of dust and cat fur that set off the alarm.  :)   Moral of the story, not only can an outrageous build up of dust and fur force one to have to carry masking tape in one’s purse as a permanent accessory, but more importantly can cause heart-stopping, leg-straining, cat-panicking full fire alarms. Not to mention elicit various scowls of disgust and horror as I am sure are now painted on your good-thing-you-love-me faces, as you all read this. LOL

The point in sharing this story is that I am feeling pretty good. The extra hours on my feet that night caused some swelling in my leg which along with one of my drains popping a valve, caused me to panic and I went to the on call doctor yesterday who said that the swelling is just from being up, NOT a sign of lymphedema, that my stapled incision is looking great, and removed one of my two drains. After the reassurance from the nurse practitioner, my dad and I walked around in the beautiful 85 degree weather, and also visited a bead shop where I picked up some things to keep me busy.  The need for pain medication is getting lower and lower. I am spending more time on my feet, aaannnd… I finally peeled apart the jewelery ball and discovered things I haven’t worn or seen since I lived in Seattle…all of which are taking  part in raising my spirits and preparing me for my ongoing battle.

I have a doctor’s appointment tomorrow with the oncology team that will be handling my Interferon treatment. There is a chance that they will have the pathology results available, but more likely with that many nodes to dissect, I will have to wait for my appointment with my surgeon next week.  We will be meeting to discuss my recovery, and plan for when we will be starting the Interferon treatment. I will update you all as soon as I know.

So for now I am continuing with my organizing, planning on having daddy give me a box every couple of days that may or may not have been gone through since any of my moves in the last five years…lol. That’s all for now, except at the risk of being one of those annoying pet-parents that bombards everyone the come across with photos of their furry surrogate babies… I am attaching a couple more shots of my lovies, doing their part by helping me relax.

That's what I wanna be next....

Unlike Stink, he has no problems being cooed at...

Stink-stink in her favorite position.

Stink-stink tolerating my camera cooing...

We worked through the exercises the physical therapist suggested, and painful as it is, I am happy with the mobility I have already, and I am hopeful that all the numbness in my thigh will at least recede to a smaller area because currently it feels that my upper thigh is permanently asleep from my groin down to my knee cap, almost all the way to the back of my thigh. I can feel the muscle below the skin, but just touching the skin gives me the creepy crawlies now. Kind of like when you get Novocain or local anesthetic and your cheek feels all numb.

I found the quote at the title of this posting on an inspirational cancer website, and it resonates so, so true. But, like a lot of things, my heart absorbs the wisdom, but my mind just cannot seem to let go of the fear. So, that is my challenge to myself throughout this journey, is to learn to trust in the things I want to believe in, not just look at them with a passive idolization. So it’s the end of my day, I’m realizing just how tough this is. At the end of the day, I realize just how scared I am, and just how mean that makes me act towards the people I love the most, the people who are sacrificing themselves just to be near me, and help me. And it horrifies me, because I remember being on that end of that scared anger. It’s like trying to help a wolf with his paw caught in a trap, the more you try to help, the more you get bit.  I remember the pain and helplessness I felt as I kept trying to reach in.  It horrifies me that I know that same fear that she felt that made her lash out in frustration at the ones she loved most is now swelling inside me.

It is so ironic that before my diagnosis, I was just coming to the starting line of the faith I was planning on finding, and the health regime I was planning on starting, and the positivism I was planning on learning, and the patience I was planning on cultivating. I no longer have the grace of time to find all of these wonderful traits that I envy in so many of the people I love. I am now in the position of necessity, because I cannot get through this without faith that I will, the commitment to changing my health and health patterns, the positivism to keep me from falling into depression or culminating the negative that always looms, or the patience to let myself be helped, without having to persecute those who are loving enough to help me. At the end of the day, when I’m alone, I reflect on the day that went by, and all the opportunities I had to be gracious in my actions instead of cowardly apologizing after the damage of my rage has been done.

So tonight I am praying for faith. I read a quote today that “It is when God appears to have abandoned us that we must abandon ourselves most wholly to God.” And it was not the time of my diagnosis that I first felt abandoned, but it was in the weeks before my diagnosis that I finally began to feel the need to abandon the crippling weight of the illusion of control, and let God guide me in finding strength for the things that are actually in my control.  Much like cancer can grow for years within our bodies without it ever making itself known, so can the effects of loss, and despair, and fear. Tonight I am praying for the strength to finally love myself enough to stick to the health changes I need to make because I believe in them, and I cannot allow myself to be self destructive any longer. Tonight I am praying for my negativity to be washed away, it is a storm that has ravaged my dreams and the dreams of those around me, kept me from pursuing my desires, and built up walls around me that have hurt not only me, but the ones I love. Tonight I am praying for patience, for the collaboration of all these prayers to come together to grant me the faith to know that I am loved, and that I do not have to carry my burdens alone, to trust that I am loved, and to truly know that I am worthy of this life that I have been given and the amazing blessings of the wonderful people God has given me to share it with.  And most of all, tonight I am praying for the forgiveness of my fears, because I know there are still going to be moments that I won’t be able to understand the path, and that fear will come to shake my faith, but I will use all my might to reach down within and know my purpose, and trust in God that it has yet to be fulfilled.

]]> http://kathysdaughter.org/uncategorized/worry-does-not-empty-tomorrow-of-its-sorrows-it-empties-today-of-its-strength-corrie-ten-boom/feed/ 8 http://kathysdaughter.org/uncategorized/home-again-home-again/ http://kathysdaughter.org/uncategorized/home-again-home-again/#comments Thu, 23 Apr 2009 23:48:34 +0000 http://kathysdaughter.org/?p=5 Hi to all!! I’m happy to say that I am out of the hospital, and back to the “comfort” of my couch, and happy company of my annoying little kitties bouncing on my head.

The surgery went well, they removed somewhere around twenty lymph nodes, which is a lot, but as they got deeper they biopsied one of the nodes which had no cancer cells, and they were able to stop there without removing the lymph nodes in the pelvic area, which would have been a much harder recovery and significantly increased my risk for lymphedema. The incision is significant, about eight inches long, all covered in staples, along the crease of my leg. There are also two drains that will remain in for a few weeks. Sort of distracts from my other scar that is healing nicely on the back of my leg.

Before I left the hospital yesterday I met with a physical therapist who said that I am not showing any signs of swelling in the leg, which is excellent. The plan is to try to get as active as I can, and I will only have to get the compression stockings if I start to show signs of swelling. Another permenant risk is infection in the leg from scratches or wounds. I am going to have to consistently monitor my leg for any scratches, as there is really limited infection protection in that leg now. Daddy had the kitties taken to the groomer to have their nails trimmed.

All in all, I am feeling pretty good, the pain is pretty well managed now, but the numbness is a very strange feeling. I am not sure that I will regain any of the feeling in the upper thigh, as I was warned that some would be permenant, I’m hoping that the some of the large area will repair itself after some time.

“If you are going through hell, keep going.”

~ Winston Churchill

I’ve got a good stock of movies and books, but if anyone has any suggestions, please feel free to share!! And here are a couple of shots of my couch partners, Lil Boy and StinkStink.