I guess I have put it off long enough. I will now reveal to you all what has been going on. I caved to the multiple calls and emails politely asking, "Are you okay? Haven't heard from you and I'm worried." or just those of you that are brazen enough to write, "What the fuck is up?"
I had a MRI of the right hip/pelvis/femur 2 weeks ago and the bone mets have woken up and are back in action. My CA 27-29 took a 40 point jump and my oncologist said maybe that the spike in tumor markers coupled with my pain was probably indicative of new activity. The pain in my hip has become unbearable. I can barely walk and simple things like getting in the car, getting in and out of bed and stairs send me through the roof with pain. I am already on round-the-clock sustained release pain killers and have had to take more meds than ever for breakthrough pain.
My extremely aggressive cancer it acting extremely aggressive again. I had a Breast MRI and Mammogram last week. Two new tumors in the left breast. The right one, for the time being is clear.
I got in to see the Endocrinologist about my elevated estrogen and high DHEA levels and she told me that she had never seen anything like this. She was my kind of clinician. To the point, friendly and to wrap up my appointment she said she needed to go, so she could start looking at my films. I like someone who makes me feel like she is on it. She said when and if we get to the bottom of this medical mystery (she didn't bite at my 3rd ovary theory) she will have to write a paper for submission BECAUSE IT IS SO STRANGE! Freaks & Geeks on the Discovery channel here I come! She has some ideas about what it might be:
1. Adrenal hyperplasia
2. An estrogen secreting tumor on the adrenal glands
3. Some ovarian tissue that was left after hysterectomy
I asked if the adrenal glands can be removed and apparently one can have an adrenalectomy. There is a local surgeon that does the procedure. Problem is that the adrenal glands secrete "life necessary" (her words) hormones like cortisol. So, if I had the adrenals taken out it could potentially cause a whole host of endocrine related problems and I would have to take supplemental hormones for the rest of my life. This is not an attractive option to me.
She also said that a round of chemo might be prudent. Even though the endocrinologist, my gynecologist and my oncologist don't know what it is that is elevating the estrogen and DHEA levels it is clear that the cancer is feeding off the estrogen and causing growth.
Matt and I saw Dr. K today and he said that he could see it in my face that I am in agony. He said because I don't complain about pain this must be serious. He said I can't live in pain like this. It is probably not helping to contain the cancer spread if I am constantly in pain. I am off to get the hip radiated next week. I am fine with this because it should help within 2-3 weeks and apparently the side effects are minimal.
Then he said that I should probably prepare myself for some "tame" chemo. He doesn't know what kind yet and won't until he chats with the endocrinologist but it might start in May. It feels like everyone is looking to chemo to sort of interrupt the process or just kill it. It will work, of this I am certain.
So for now I am a little cranky and a little scared and a little angry. I hate these times when I am supposed to be accepting my "new normal." My "new normal" sucks. I want my "old normal" back.
I know that you are all out there rooting for us, praying for us and just waiting for something you can do. Don't worry we will be calling on friends/family soon. I am trying to get a lot of rest and have good pain control. Matt is displaying his rock solid command of the home and work front. He is busy preparing for what the future holds for our family. We will know more after Thursday when we meet with the radiation doctor.
So for now please no calls. Emails and texts are cool. We need to talk to the girls first.
Saturday, March 28, 2009
Monday, March 9, 2009
Young Survivor Conference in Dallas
I returned from the YSC conference in Dallas and I am happy to report that this year was quite different than last year. Better, stronger, faster...............
Last year the conference was in Jacksonville, Florida. That is a long flight. My flying buddy had an anxiety attack (the likes of which I have NEVER seen) and had to deplane before we left Seattle. It was so annoying (not her panic) but the flight attendants. OMG they kept saying, "We have seen this before and she will be F-I-N-E once we are airborne."
I looked to my friend and responded, "Does that look FINE to you? She is clearly not FINE. She needs to get off this plane." She was a puddle of goo.
They said, "We have already moved away from the jet-way, she'll be FINE."
There was quite a bit of back and forth and I said, "Just back the G.D. plane up and let her off or we are going to have a real problem." Fortunately, they did and she was fine.
So this was how my first trip to the YSC conference started. I long flight (red-eye) worrying about my friend and thinking that this was a sign, a bad one.
When I arrived in Jax everything felt surreal. It seemed like everyone else knew what to do but I didn't. They knew where to go, they had friends there, they had little treatment groups that bopped around the conference together with matching T-shirts. Basically, unlike me, they all had it together or knew someone or read the instructions. I was just totally overwhelmed. The pink factor was so high is was nauseating. It was a sea of pink.
Red sea, Blue sea, Pink sea, get me out of here now!
Everyone at the conference was delineated by a plastic lei. Blue for caregivers and yellow for health-care workers. Purple, green, white for years of survival, white being less than one year. Orange for mets. There I was dazed and confused and my albatross was a white and an orange plastic lei. I have mets and have had it for less than one year. I felt like Hester Prynne with her scarlet "A."
Here is what really blew my mind. I looked out into this large group of women with breast cancer that are under the age of 40 who have the time, the home support and the money to attend this conference and all I see is the orange and white. I know it is just like when you get a new car and then all you see on the road is that new car but it was so representative of the horror of this disease. These women at the conference were the fortunate few. How many others were out there with MBC who weren't represented there in Jacksonville with plastic leis.
I spent a lot of time in my room. I was so physically exhausted and emotionally sick that I couldn't bear it. I made friends with 4 women at the conference: Danica, Valerie, Beth and Dayna. That was it. The only people I really interacted with the whole weekend. Then on the way to the airport when I was just about to completely fall apart due to pain, both physical and mental, some BC sisters took care of me. They didn't know me but they could see the anguish, heck they could probably smell it coming off of me like an odor. Diane, Yuri and Heather probably saved me in that moment at the airport. Without them I probably would not have made it home (in all senses of the word.)
This year I set up some exit options and some alternative activities which was a good thing for me. I came in on Thursday and had dinner with my girlfriends Anne and Eileen. We went to this amazing restaurant that was opened by a guy who went to my high school!!! Apparently there is a large contingent of people from Washington who have moved to Dallas. Who knew? Then my friend Eileen stayed on until Saturday. I could go to the workshops and catch up with folks and then come back to my room and chill and hang out with Eileen. Just having these little things to do that weren't centered around breast cancer completely changed my outlook and thus changed my experience at the conference.
I had a really good time. I learned a lot, I hooked up with a lot of women I only email with on the YSC boards or FaceBook and I danced and had Taco Bueuno! I wasn't overwhelmed and it wasn't info overload. I feel so lucky that I could go. I really owe this opportunity to Matt. Matt can handle the home front with an adroitness most Mom's don't have. He makes this soirees possible and I really thank him for that. There are many other women who could not attend solely because their husbands could not handle home life without them (hometards.) Thanks again sweetie heart!
I kept my eyes open. I saw Dayna, Diane and Valerie. They looked wonderful and all reported wellness in their worlds. Beth, Yuri and Heather couldn't make it this year and sadly Danica passed last year. I wrote a little remembrance card for her. She was a bright spot in the darkness of my 1st YSC conference.
At my 2nd YSC Conference I was on the lookout for the girl with the orange and white plastic leis with fear in her eyes and anguish in her heart. If she was there I didn't see her. I have graduated to orange and green leis and clearly that makes all the difference.
Last year the conference was in Jacksonville, Florida. That is a long flight. My flying buddy had an anxiety attack (the likes of which I have NEVER seen) and had to deplane before we left Seattle. It was so annoying (not her panic) but the flight attendants. OMG they kept saying, "We have seen this before and she will be F-I-N-E once we are airborne."
I looked to my friend and responded, "Does that look FINE to you? She is clearly not FINE. She needs to get off this plane." She was a puddle of goo.
They said, "We have already moved away from the jet-way, she'll be FINE."
There was quite a bit of back and forth and I said, "Just back the G.D. plane up and let her off or we are going to have a real problem." Fortunately, they did and she was fine.
So this was how my first trip to the YSC conference started. I long flight (red-eye) worrying about my friend and thinking that this was a sign, a bad one.
When I arrived in Jax everything felt surreal. It seemed like everyone else knew what to do but I didn't. They knew where to go, they had friends there, they had little treatment groups that bopped around the conference together with matching T-shirts. Basically, unlike me, they all had it together or knew someone or read the instructions. I was just totally overwhelmed. The pink factor was so high is was nauseating. It was a sea of pink.
Red sea, Blue sea, Pink sea, get me out of here now!
Everyone at the conference was delineated by a plastic lei. Blue for caregivers and yellow for health-care workers. Purple, green, white for years of survival, white being less than one year. Orange for mets. There I was dazed and confused and my albatross was a white and an orange plastic lei. I have mets and have had it for less than one year. I felt like Hester Prynne with her scarlet "A."
Here is what really blew my mind. I looked out into this large group of women with breast cancer that are under the age of 40 who have the time, the home support and the money to attend this conference and all I see is the orange and white. I know it is just like when you get a new car and then all you see on the road is that new car but it was so representative of the horror of this disease. These women at the conference were the fortunate few. How many others were out there with MBC who weren't represented there in Jacksonville with plastic leis.
I spent a lot of time in my room. I was so physically exhausted and emotionally sick that I couldn't bear it. I made friends with 4 women at the conference: Danica, Valerie, Beth and Dayna. That was it. The only people I really interacted with the whole weekend. Then on the way to the airport when I was just about to completely fall apart due to pain, both physical and mental, some BC sisters took care of me. They didn't know me but they could see the anguish, heck they could probably smell it coming off of me like an odor. Diane, Yuri and Heather probably saved me in that moment at the airport. Without them I probably would not have made it home (in all senses of the word.)
This year I set up some exit options and some alternative activities which was a good thing for me. I came in on Thursday and had dinner with my girlfriends Anne and Eileen. We went to this amazing restaurant that was opened by a guy who went to my high school!!! Apparently there is a large contingent of people from Washington who have moved to Dallas. Who knew? Then my friend Eileen stayed on until Saturday. I could go to the workshops and catch up with folks and then come back to my room and chill and hang out with Eileen. Just having these little things to do that weren't centered around breast cancer completely changed my outlook and thus changed my experience at the conference.
I had a really good time. I learned a lot, I hooked up with a lot of women I only email with on the YSC boards or FaceBook and I danced and had Taco Bueuno! I wasn't overwhelmed and it wasn't info overload. I feel so lucky that I could go. I really owe this opportunity to Matt. Matt can handle the home front with an adroitness most Mom's don't have. He makes this soirees possible and I really thank him for that. There are many other women who could not attend solely because their husbands could not handle home life without them (hometards.) Thanks again sweetie heart!
I kept my eyes open. I saw Dayna, Diane and Valerie. They looked wonderful and all reported wellness in their worlds. Beth, Yuri and Heather couldn't make it this year and sadly Danica passed last year. I wrote a little remembrance card for her. She was a bright spot in the darkness of my 1st YSC conference.
At my 2nd YSC Conference I was on the lookout for the girl with the orange and white plastic leis with fear in her eyes and anguish in her heart. If she was there I didn't see her. I have graduated to orange and green leis and clearly that makes all the difference.
Sunday, March 1, 2009
Cruisin'
Matt has made all the arrangements and we are going on a cruise! I can't believe it! I never thought I was the kind of person who would be a 'cruiser' but now I welcome it. This trip was amazing! Maui was an amazing trip too but unfortunately because I can't carry anything Matt became the Sherpa for our family. On this cruise we got to unpack, sit back and relax. The heaviest thing Matt had to lift for most of the trip was a beer.
We left out of Miami which is an ENORMOUS port. Our ship was the Carnival Valor. We had two "fun" days at sea and stopped at the port of Belize City, Rhotan Island Honduras, Cozumel Mexico and Grand Caymans. Each stop had something completely wonderful about it. In the Caymans we took the girls to "hang with the manta rays" and in Cozumel they got to "swim with the dolphins." These are experiences they will never forget and we did it as a family. The other two ports we just did beach days. It was so nice to just go to these white sand beaches and play in the water and drink beers under the palapa.
Cruising is really a hobby verging on sport for some. There are websites devoted to cruising. Cruisers post by their profiles how many times they have been and all the ships they have been on. I have nothing to compare but I thought the ship was lovely. It was so clean and the staff was so helpful and kind. There was always something going on and there was a camp set up for the kids. We were really fortunate to be on the top floor of the ship that had staterooms. This was a huge plus!! We had a balcony and nice neighbors (all seasoned cruisers stay on the top deck!) It was tight quarters but tight in a fun way. The girls were fascinated by the bed that popped out of the ceiling. Additionally, our steward made a different animals out of towels everyday for the girls. At the end of the cruise you could purchase the book "How to make towel animals" at home if you wanted too. We passed.
The amount of food and the ability to get food any time day or night was absurd. There were probably 10 restaurants, 6 buffets, 5 short order windows. I put on 10 pounds during the trip. Basically a pound a day for 10 days of vacation. That is what makes it so attractive because the food in all included. It's the alcohol that gets you...............always does.
When we got into Miami on the return we stayed overnight at a hotel because we had a really early flight. To complete our trip we had dinner at the Hooter's in Miami. It was voted the #1 Hooters for 2007 and 2008. The award for for gross sales not cup size I found out. The amount of money those gals made in tips was probably astounding. It was the perfect end to a wonderful vacation where we spent our time laughing at ourselves and at others.
We returned to rainy, snowy Seattle tanned, rested and relaxed. It was an awesome vacation and I would do it again in a heartbeat. I am a cruiser now!
We left out of Miami which is an ENORMOUS port. Our ship was the Carnival Valor. We had two "fun" days at sea and stopped at the port of Belize City, Rhotan Island Honduras, Cozumel Mexico and Grand Caymans. Each stop had something completely wonderful about it. In the Caymans we took the girls to "hang with the manta rays" and in Cozumel they got to "swim with the dolphins." These are experiences they will never forget and we did it as a family. The other two ports we just did beach days. It was so nice to just go to these white sand beaches and play in the water and drink beers under the palapa.
Cruising is really a hobby verging on sport for some. There are websites devoted to cruising. Cruisers post by their profiles how many times they have been and all the ships they have been on. I have nothing to compare but I thought the ship was lovely. It was so clean and the staff was so helpful and kind. There was always something going on and there was a camp set up for the kids. We were really fortunate to be on the top floor of the ship that had staterooms. This was a huge plus!! We had a balcony and nice neighbors (all seasoned cruisers stay on the top deck!) It was tight quarters but tight in a fun way. The girls were fascinated by the bed that popped out of the ceiling. Additionally, our steward made a different animals out of towels everyday for the girls. At the end of the cruise you could purchase the book "How to make towel animals" at home if you wanted too. We passed.
The amount of food and the ability to get food any time day or night was absurd. There were probably 10 restaurants, 6 buffets, 5 short order windows. I put on 10 pounds during the trip. Basically a pound a day for 10 days of vacation. That is what makes it so attractive because the food in all included. It's the alcohol that gets you...............always does.
When we got into Miami on the return we stayed overnight at a hotel because we had a really early flight. To complete our trip we had dinner at the Hooter's in Miami. It was voted the #1 Hooters for 2007 and 2008. The award for for gross sales not cup size I found out. The amount of money those gals made in tips was probably astounding. It was the perfect end to a wonderful vacation where we spent our time laughing at ourselves and at others.
We returned to rainy, snowy Seattle tanned, rested and relaxed. It was an awesome vacation and I would do it again in a heartbeat. I am a cruiser now!
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