Thursday, October 22, 2009
Monday, October 19, 2009
I hadn't seen her in about a week, and today I found out that she passed away on Friday. 55 years old.
I didn't know her very well, but I'll always remember her sweet rosy cheeked face, and the love that surrounded her. The news makes me very sad. Strange how we can feel that way for perfect strangers. My heart is with her family who cared so much for her. May they find solace in each other, and in knowing that their mother, friend, wife, daughter, made a difference in the world.
photo by: http://www.flickr.com/photos/magdalengreen/
So I have this journal. And thought I'd put my diary entry here. Now I know in a typical diary you are supposed to write everyday. I hope I haven't waited too long to write and have forgotten some of the deatils. Let's see...
Wednesday--chemo (I already wrote about this part). Purely exhausted from the emotional trauma of it all.
Thursday--enema/coffee enema a.m. Work, feeling good.
Friday--first nausea pill in a.m. IV, hyperbaric, home to sleep. Up for dinner and walk. Most nauseated that evening. Emotionally good.
Saturday--very fatigued. Nausea pill in a.m. Stayed home all day. Had lovely visitors!! Emotionally good. Slept, slept...
Sunday--enema/coffee enema. Felt worse after the enema's. No nausea pill though. Mostly feverish and heavy. Krish and Augie came over and helped with some house stuff. I love my brothers!! Fatigued, lazy. Emotionally okay. Slept well.
Monday--morning at the clinic. Fatigued. Nausea gone. Starting to notice that I am pretty emotionally unstable. I look ragged--dark circles under the eyes. Don't have energy to fix hair or make-up. Crying too much anyway for that. I sleep like the dead in the hyperbaric oxygen chamber. Go to work in the afternoon and hit a wall after only 3 hours. I get this e-mail from my aunt Patty telling me about a post she wrote about me on her blog. SO increbily touching that I can't even read it completely at work because I am so thin. You should read it here: Fierce Grace It is very touching and beautiful. But I had to save it for another day. It was too much for me.. I don't know how that speaks to fierce grace!! I went home and slept while Michael made the most delicious dinner. And 9 pm came and I said..okay..Bed time??? And he looked at me bewildered, but came to bed to lie with me while I slept. I just love that man of mine.
Tuesday--worst morning yet. I can't stop crying. I am at the clinic and I can't even stop crying when the nurse tries to hook me up to the IV. They give me some extra magnesium and some herbal anti-anxiety pills. The magnesium helps. Then I go to the hyperbaric oxygen chamber and cry non-stop in my private escape. It was a strange cry. Not the kind where I was crying for a reason. It felt like my body was trying to get rid of something...like vomiting...but with tears. It was a deep sob. Fierce grace alright!! That lasted all told about 2 hours. I was left numb. And raw. And totally exhausted. And then I went to work. Bad idea. Anytime someone came and talked to me I'd cry. I'd cry if someone wasn't talking to me. I was like a leaky faucet in need of a plumber in the worst way. I lasted for about 3 hours. And went home and passed out on the couch.
Now, Tuesday's are the days that I am getting the glutathione/lipoic acid IVs. These are different from the vitamin C IVs. These are potent antioxidant IVs. And I truly felt that this along with the catharsis was my turning point.
Wednesday morning I woke up and began to remember what it was like to feel normal again. I had glmipses of happiness. of hope. of energy. I went to the clinic to get the IV and hyperbaric. I was going to go home and work, but I went home and slept for almost 2 hours. I woke up feeling refreshed and ALIVE!! We had dinner out with a friend--like a real person! Out...us! Out of the house doing something fun!!
So that was it. Since then I've been feeling GREAT!! I keep telling Michael how good I feel. WOW! I feel good today . yay!! It feels good to feel good. ahhhh.a.....h yes. I am smiling. And brushing my hair. And off the couch!
Thursday I did the clinic and work, and it was fine!! Thursday night we had our first friends over since being married. It was lovely.
Friday I worked ALL day!! And felt good! And productive! We went to the haunted house that night, and lapped up all the yummy goodness that is friendship. I lathered and bathed in the love from that. Whether they knew it or not, I loved just being with them.
Saturday Michael and I had the most romantic date day up in the mountains. Being silly at the pumpkin patch in the fridgid weather. Hiking. And then coming home to delicious dinner and Coraline--a great movie!!
Sunday we got to see new beginnings. Cleaned and purged the spare room (desparately needed!!) with mom. And ended the day with a lovely dinner with friends hearing of travels and good times.
So that brings me to today. I feel great. I am happy. And I am about to head to the Kaiser office to check my blood counts to see if I can begin this whole cycle again on Wednesday.
Good news is, I can feel my tumors have already shrunk!! So good things are happening.
love to you all!!
Saturday, October 10, 2009
Michael has proven time and time again that he is in it for the long haul. Everyone who knows my sweet husband knows that he is inherently a good care giver. I'll never forget the first Christmas that Michael spent with my family. We all went to Cirque du Soilel. In the mad dash to the cars after the performance, family was splitting off this way and that, trying to decide where to have dinner, and who should ride with who. It was a bit chaotic, and when I looked to see where Michael was, he was in the back making sure my grandmother wasn't left alone. (Even though he thought her name was Ruth at the time!) They were cutting up, and it was then I was reminded again that he truly is a gem of man. His heart is pure and kind and gentle despite the silly antics that he puts on.
And so, to no suprise, he has been fantastic to me this week. It is a tough week for both of us. Coming down from the high of the wedding to waking up during the night dealing with this situation The night after the port was put in he had to wake up each time I needed to lie down and sit up.. He'd get me pain pills, and he'd sit with me rubbing my back as I cried.
He scrubbed the bathroom because he wanted to make sure there was no mold anywhere to cause me any additional problems. We also needed to be clean for the start of the PBsEB experience (for those of you who don't know...the Patty Bralley Enema Bucket kit). Sorry if this is TMI for you all, but enema's and coffee enemas are a part of life now. BTW...Great Kit Patty!!! I think you should market this puppy!
Wednesday morning we got up and quietly got ready to go. Mom called just as we were walking out the door to send love. We barely said many words to each other on the way to the infusion center. I asked him if he was scared, and he said yes. And he held my hand, and we drove in silence. I lost it when I entered the waiting room to sign in. I couldn't stop crying. The women at the desk looked awkward and said "it'll be okay Ms. Bralley" and Michael preceded to say, it's Mrs. Cook now!! Which made everyone ooh and aahh, and took my mind back to happy things. He told stories about the wedding. He's got this way of lightening the situation.
So I got weighed, blood pressure and temp taken. I can't tell you how many times I've done that in the past two months!! And then we went back. The surgeon left the port accessed so they didn't have to go in to a fresh wound. The nurse was nice and talked softly, which I so much appreciated. Her demeanor was calm. That helped. But I still couldn't stop crying. Michael was right there. Holding my hand. Looking into my eyes. Telling me it was going to be okay. I was...just..so...scared...
And then we started. The nurse went through each of the 4 drugs one by one and told me all of the common and rare side effects. If that isn't enough to make you want to run screaming out the door--well I don't know what is. Enough talking...the nurse started the first drug. The port was working beautifully. We had a good blood return. And then we did the next one, and the next, and then the next. 4 drugs, 3 hours. Lots of tears. Hope smattered in there that this will all be some bad dream soon. Mom tells me to look at these drugs not as poison, but as healing potions. That helps..but it hard to situate the mind that way.
We came home to find flowers waiting at the back door from Mom and Dad. I talked to my mom later to thank her and she said, she wished she'd thought of it, but it wasn't her. It was then I realized that yes! I really do have two sets of parents who love and adore me. So thanks Chuck and Rin for the beautiful sunflowers that still bring sunshine into our home.
And then I slept. And I slept well that night.
Thursday morning we woke up, I did my PBsEB. And felt pretty okay. So I got dressed and went to work. I worked the whole day (almost). Felt a bit overwhelmed, but we've got good people there, and things are getting taken care of.
The best news came from Dr. David around 4 pm. We decided to have Metametrix draw and handle my enzyme test to send out to Quest Diagnostics. This is the test that I needed to pass in order to get the Vitamin C IVs. The one that Progressive said I failed last week. Well, Dr. David came to find me, all happy..and said you've got to see this!! NORMAL!!! normal. normal.....aahhhhhhh....thank the heaven and stars and earth below my feet. I can do these Vitamin C IVs. YES! I am So hopeful that these will decrease my duration of chemo, and completely eliminate the need for radiation. Hopeful thinking, but that is where I need to be right now.
So Thursday wasn't so bad. :)
Friday I went in to Progressive for a Vit C IV, hyperbaric, and then came home to sleep. I could feel the magnetism to the couch growing stronger. I get up and about for awhile--I did the dishes...and then I just want to lie back down again.
Last night was nice. We went for a walk--something that is important for us to do everyday. Michael cooked a delicious, healthy, organic dinner. We watched Stargate and thought of Dad--SciFi Friday! And then curled up in bed to read. Michael got a new nintendo DS lite game from April and Andy for the wedding, and he's been enjoying it so much.
The nausea hit out of nowhere last night. Fortunatley there are pills for that. And my sweet husband, right there with the trash can (which I didn't end up needing) and a cold towel.
So that brings us to today. I can't remember that last time Michael and I had a weekend where we had no plans. We have SOoooo much to do around the house and we are usually so busy, we never get to it. Now we are home, and I don't feel like doing a thing but lie down. Oh well..I am trying to just let that go.
We thought that maybe I wouldn't feel so lazy if I just stopped being lazy. So we went for a walk, which felt good. And now, here I am back on the couch. ....ahhh..oh well. He is out and about running errands. So atleast there is that. ;p
So so far the chemo hasn't completely knocked me out. This is good. We can live with this if this is the worst of it. It would be nice to know that was true. Hopefully all these other lifestyle things we are doing will help keep me healthy and with less symptoms.
Sorry if I just blabbed your ears off--or tired your eyes out...I guess when I finally sit down to write I just spill it.
My heart is also thinking of all the others out there struggling right now. It is a heavy time for SO many people I know. My love goes to the Sefic family who just lost an amazing lady. To my grandmother, and to all the others out there, you know who you are (I won't out you unless you want me too!). I wish everyone peace, love, and health.
photo by Tijana Sefic
Tuesday, October 6, 2009
What a crazy roller coaster road of emotions. The wedding weekend was .... I can't even put into words the joy I felt. Yes, yes, definitely a peak experience time and time again. The blessing way, the lovely rehersal dinner, bonfire, drumming, dancing, laughing...The easy going Saturday morning with the women in my life bustling like bees all around primping and preening. I remember so vividly sitting in the upstairs of the cabin with my three bridesmaids doing each others hair and make-up while my mom sat so sweetly on the bed. Girl talk. Female bonding. The sky was vivid blue, the windows open with the view of the mountains, and the breeze blowing through and cleansing us all. And then moving to the next room with Michaelle and Lia doing the same thing. Lia is right, commune life has its appeal.
The wedding was SO perfect. I can't think of a single thing that went wrong. Michael was SO handsome, I couldn't keep from kissing him constantly. I almost held it together. But who are we kidding...we knew I couldn't make it through a wedding without shedding some tears. The weather was perfect, the setting was perfect, the land was magical...in fact the whole night felt like a fairy tale.
I loved getting to see friends I haven't seen in awhile---if even only for a second. To hug them, and connect. The family who came to town just for the event...ahhhh....family is a GOOD thing.
Our first night in the wedding cabin on Neverland was by far the most romantic night of my life so far. We walked in the cabin, to find what seemed like hundreds of candles lit. Music was playing, the full moon was out. It was a night I'll never forget.
Sunday was delightful getting the last seconds of love from all the visiting guests.
The weekend was SO full. My reserves are full. My love and joy meter was full. And what more could I ask for before I embark on this next journey.
Monday we slept in. Curtis was pooped too and didn't even bother us to get up! Michael and I took the day off work to be together. We got my blood drawn again to just double check this enzyme deficiency that might keep me from being able to get the Vitamin C IV's. Then we headed to the clinic to get an IV of some good juju...glutathione and lipoic acid. We ended our honeymoon by going to the Dekalb Farmers Market and buying all organic produce and grains to start our new lifestyle on the right foot!
And then...as par for the course...I didn't sleep a wink last night. I had a doctor's appointment today and for some reason, that is a sure fire recipe for insomnia. I also started having this real pain in my neck...like the kind I had in early August. And sure enough, when I woke up this morning, my neck had gotten worse. Puffy and painful.
So yes, it is time. We are to get this ball rolling. We decided not to wait for the test results for the enzyme deficiency issue. Even if they were wrong, this vitamin IV therapy will be adjuctive to the chemo. We are just hoping that it will keep me from having to get radiation therapy...among other things like infertility, extreme fatigue, etc...
Krishan and Augie came over tonight just to say hi. It was so nice to see them and relive the memories of the weekend. Mom took care of me today at the doctor for the port procedure, and then Michael came home to help lift me up from lying down, and vice versa. They say it'll take a few days to not feel the pain from the surgery.
I just got the sweetest e-mail from my new mother-in-law. So yes, as I sit here on the eve of my first chemo treatment, I have much to feel grateful for. And much to be scared of. I just hope I can sleep tonight.
On that note....sweet dreams to all!!!
Thursday, October 1, 2009
Everything is coming together. We are almost packed, and ready to go...although I am sure it is going to take longer than I thought to finagle everything in the car! I've had such meaningful interactions with so many people in preparation for this wedding. I can see why it is so special. For example, Chuck, Michael's father, came to visit last weekend for the bachelor party. We found ourselves, the three of us, sitting around the living room table tying pretty bows around the honey-flavored bee soap that will be in gift bags. I had to just stop and soak in that moment. There are so many more memories I have just like that one...of family,and friends, and connection, and love all filtered towards one goal. Whew, it is enough to blow you right up!
So thank goodness for this wonderful experience. We've enjoyed all the "leading up to part"...and now we are embarking on the "there part!" Michael, Curtis and I head out in just 3 hours to spend the next three nights in the mountains celebrating life and love with everyone we care about.
And as yin follows yang, now onto the not so fun stuff that is just a part of life. I haven't updated in awhile, and so much has happened, yet as I sit here, I am unable to even give you the answer to the question "What is Next?" We've thought we've had it figured out 10 times by now, but it changes, and it has changed again as of this morning, exactly 1.5 hours ago. The balloon was deflated again in my health care arena, and it feels real, real deflated.
The back story...
I think the last time I wrote I had just suffered through the bone marrow biopsy. GOOD news is that my bone and marrow are cancer free!!! And look healthy. Whew...
By some delicious twist of fate, my dad was connected with an old friend of his that had just interviewed Jeanne Drisko, an oncologist who uses high dose vitamin C IV therapy to treat cancer. She is working through the University of Kansas, and mainly uses it as an adjunct to traditional cancer treatments. She has amazing success with these therapies.
Last week we went to Progressive Medical clinic, the integrative medical clinic in town, because we know that they can administer these IVs. They also have a team of great docs who are a wonderful resources to have on our side. The next day, I was in the clinic, sitting in the chair, with IV in arm. bam...we jumped right in with lots of positivity. I was surrounded by patients ranging everywhere from breast, to bladder, to brain, to colon cancer. All had different stories, all were doing the treatment plan that worked for them..some blending traditional with non, some strictly non-traditional, some coming after being disappointed with the tradtional type. I definitely felt like the new-bie, but they welcomed me and showed me the ropes...like how to pee with your IV bag, ...etc.
Monday I went in again for the IV. This time they had me start hyperbaric oxygen therapy too. That is strange. You sit in this tube for an hour and they pressurize you, and you are supposed to get hyperoxygenated. It is relaxing though, once you get past the claustrophobic fears.
Tuesday my dad got us connected with Dr. Drisko in Kansas. We had a phone consult. I can't tell you how lucky I am to have a parent's with connections like they do in the healthcare field. She blocked out 1.5 hours of her time to dedicated just to us. She educated us a lot more in the vitamin C therapy, and how it worked. It seems pretty good, and she's had a lot a lot of success stories. She even had one patient who's lymphoma came back. He didn't want to do chemo, so he did strictly the C iv's. He's been cancer free for 7 years!!
One thing we came away with from her talk is that we don't have to rush. She counseled again that it might be wise to visit a fertiltiy specialist just to know our options. This ABVD therapy can cause me to go into premature ovarian failure, i.e. menopause. This scares the living hell out of me.
She also made us realize that these vitamin C IVs could shorten the chemo needed, and could probably also make us feel real comfortable with not doing the radiation. Which is BIG plus. There is even the small little chance that these could cure me.
She said, get in that clinic and do as many IVs as you can. So I did. I came back Wednesday, and am now sitting here Thursday. It seems VERY hopeful that this treatment can be helpful. We kind of decided that I'd take a couple of weeks, or a month to just do this, along with heavy detox, sauna, diet, and nutrient repletion before deciding about the chemotherapy. Get all the ducks in a row...And if we do these IVs we don't have to worry about the waiting part...because it is likely killing the cancer!
And then...the bomb drops. Hard. And out of nowhere. I was glowing...everyone said so this morning at the clinic. I am about to get married, I am feeling SOOoooo happy. Just beaming. And as I sit waiting for my IV, the nurse calls me away to talk to the doctor.
The one blood test that you have to have done before you can embark on the C journey is G6PD. It is an enzyme that if you have a deficiency in, and you take the C IV, you can cause red blood cell hemolysis and anemia. It is a genetically inherited deficiency. It is usually found in black men. No one expected I'd have a problem with this. But guess what...I have it. And I can't do Vitamin C IVs.
So I loose it all over again...crying just as deeply as I did when I found out I had cancer. That deep primordial cry. From the depths of my soul. And it hurts...
They want to give me IV glutathione and lipoic acid. I ask for magnesium, and they didn't argue. So I sat, with magnesium flowing through my veins, trying to relax and practice that damn art of accepting it.
I am feeling a little better right now. I am trying to focus on the excitement of the weekend. I am manifesting that feeling I had this morning when I walked in this building. One thing I've learned since starting this, is that you get used to anything, it just takes a bit of time to digest it.
Guess I should sign off..they unhooked me from the IV a little bit ago...Time to go and pack!!! And love and live and give lots and lots of hugs.
much love to all of you reading along. you are with me on this journey.
photo by: www.paintingsilove.com/.../