RE-MISSION IMPOSSIBLE? OR POSSIBLE

All had been quiet on the blog front because I have just been soldiering on through my 6 cycles of Avastin and Abraxane. My final treatment for this series, which began in April, is September 25th. I was prepared to have a PET scan (the 1st one since February when I had 13 new active cancer spots on my skeleton) after the 25th and then consult with Dr. K. He was not satisfied with this situation because if the outcome was that I was to remain on the Avastin and Abraxane we would get off of our established schedule. Cancer buggers can do a lot while the proverbial "mice" of chemotherapy are away. So, I had a PET scan this last Wednesday and consulted with Dr. K. yesterday on Friday.

I had prepared myself for the worst. These scans really do a number on me. I get a bad case of "scanxiety" and continually imagine that I am going to hear, "It didn't work at all and we are going to have to move onto Door #3 and you are going to have to have a harsher drug and it is going to suck more than you can imagine and blah, blah, blah." I suppose that this is a coping mechanism, of sorts, because when you are a mets girl to even allow yourself to think that something is going to go right is just not something that we do. We prepare for the worst and hope for something on the scale just above the worst and this is progress. It really is absurd because we all want to live in a place of hopefulness, a place where our condition will somehow change from a death sentence to life without parole.

Well I guess the Governor of Cancer called up on the bat-phone and in a way commuted my sentence for the time being. Over the past 6 months I have heard Dr. K use the "R" word (remission) twice. I NEVER thought that remission was a possibility for me. I thought that even if the outcome of any treatment was good that there would still be metastatic disease on my skeleton and even thought it wasn't active it would always be there. The internal evidence of my scarlet letter "C."

On Friday, I hadn't looked at my results and so Dr. K was the first one to read them to me. I literally felt like I was in the middle of a miracle moment as he shared my results with me. I had to make sure that he was reading MY results not someone elses. The PET scan sealed the deal. Because my CA 27-29 has gone from 150 to 70, my pain is all but disappeared with the exception of my low back which has all those collapsed vertebraes and fractures, I have been feeling better than ever since I have been diagnosed and according to some (not me) I look better than I have looked (even without any hair) since my diagnosis in July 2007 we were hopeful that the PET would reveal progress. I didn't imagine it would reveal a small miracle.

Originally I had 6 tumors in my left breast and axilla. Many of them were big like baseball and golf ball size. Two had disappeared awhile ago, two were gone from this scan. I mean totally gone. The last two (baseball and golf ball) are down to 1cm by 1cm, they are petering out. The two last buggers are there but they are not doing well. They aren't thriving, they are dying. Good riddance. As far as my skeletal mets, which were EVERYWHERE in my body. THEY ARE GONE!!!!! There is no evidence of any disease with the exception of a small spot on my right 4th rib and possibly a spot on my pelvis, but that is probably a post-radiation spot not a cancer spot.

To me this is just unbelievable. This chemotherapy/biotherapy/bone builder regime has worked and it has worked well. All the fatigue from the therapies and the pain from the marrow builders and the Thursday-Friday-Saturday trips to the cancer institute have been worth it and worth it in a way that is amazing.

I'll give you a little quote from the report:
"There is remarkable interval decreased or complete resolution of abnormal activity see in the entire skeleton now." and "There is almost complete metabolic response of the osseous skeletal lesions."

The plan is this. I will have 6 more treatments of the Abraxane and Avastin which will run me up to December 18th. I will be sending out an email blast for chemo buddies and Neulasta shot ride friends on Saturday. Dr. K believes that with the 6 more treatments that I could go into complete remission. Now, me being the metastatic pessimist I am not going to hold my breath BUT I will be visualizing the death of the final 3-4 spots that are left.

Thank you all for the rides, sitting with me, playing with the girls, the meals, the support, sitting with me through the interminable chemo sessions. Thank you for the well-wishes, the prayers, the cards and the emails. Thank you for being a part of getting us this far. We couldn't have done it without your help.

Most of all I have to thank my family without you three I wouldn't be able to make it through the treatments, and the tests and the shots. Matt, Anya and Mila this victory is yours. You have sacrificed so much to get me here. Thank you from the bottom of my heart.

OK I get it I need to blog more!

So I haven't blogged since I started my radiation in April. I am so pleased to report that after THREE treatments I was virtually pain free on the right side. I am so impressed with how well area specific radiation works as well as the staff at Evergreen Hospital. You walk into EHMC and there are posters (featuring my favorite surgeon Dr. Marion Johnson) with their tag line, "Exceptional people, exceptional care." I think they nailed it on this one. My experience at EHMC for radiation was phenomenal.

Well after having such relief with three treatments on the right side I thought let's do the left. Matt and I went in to consult with Dr. Eric Taylor and my new hip/pelvis/femur MRI on the left. Unfortunately, the cancer on the left is diffuse and it would be very difficult for Dr. Taylor to "hit" the correct spot. For this reason, as well as the fact that I would be starting chemotherapy soon, he could not radiate on the left side. My bone marrow just couldn't take it before embarking on chemotherapy. I think Dr. Taylor was the most disappointed in the room. The hips, pelvis and femurs really are the largest sources of bone marrow production in the body. One side was all I could handle before a course of chemotherapy but the pain relief on the right was worth it.

I graduated from radiation on April 15th and was off to Philadelphia for the Living Beyond Breast Cancer meeting devoted to women with metastatic breast cancer. It was very informative and Elizabeth Edwards spoke. She is an amazing woman to hear speak. I would highly recommend her new book, "Resilience" for pondering many of life's issues beyond cancer.

Once I returned from Philadelphia we had a planning meeting with Dr. K on a Tuesday. I was going to start a regimen of Abraxane (a chemotherapy) and Avastin (a biotherapy) and keep going with my monthly Zometa (a bone builder.) I would have 3 weeks on and one week off getting my treatments on Fridays. It was a little confusing at first because week #1 is 2 drugs, week #2 is 1 drug and week #3 is 3 drugs then week #4 off.

Once we got that on the calendar my sister-in-law went to work on an schedule for assistance. Thank you to everyone who answered the call for driving and picking up the girls, taking them to parties and school events, folding laundry, cleaning, helping me here at the house to not get frustrated with being home alone. You have all offered to be "chemo-buddies" so Matt doesn't have to take the day off work for weekly treatments. Also, I have to mention the meals that just keep on arriving and they are so good.

Everyone seems to have something that they can do to help our family through this and you are all so generous with your time and energy. Most importantly, I would like to personally thank everyone, especially family, who have taken some of the burden off of Matt's plate. For the first time during this 22 month roller coaster ride I see Matt being able to do somethings for himself. Even if it is just to sit and watch a hockey game it is some time just for him where he can have some down time. With your assistance Matt can go to work, with less worry, and that is so important. I thank you from the bottom of my heart for all your help. We have an amazing village!!!

So where are we now? I did 2 treatments and then went in for #3 and was neutropenic. This is when your white blood cells are too low and the on-call doctor decided that I could not have chemotherapy that day. I have had a week and a half to get my WBC back up. We will know on Wednesday the 2oth. Matt has been feeding me fish, and green leafy vegetables and I have been focusing on a healthy WBC and my bone marrow working again. Our lives our hopelessly devoted to hand sanitizer and staying away from sick people (especially kids.) On that note, we really appreciate your candor when someone in your family is coming down with something. You know we would love to see you and the girls crave the play-dates but thanks for being aware of what a cold or the flu means at our house.

We should be able to start round #2 on Friday the 22nd. Keep your fingers crossed. Just as the Abraxane manual said my hair began to fall out 14 days after my first treatment. At first is was just a little bit. By yesterday there was so much hair in the shower drain it filled a gallon zip-lock bag. We decided to shave it off. Petra, my hairstylist/next door neighbor (A Sense of Style in Woodinville is where she works) came over with the clippers and cut it off. She tried to give me a sassy, short do but as I knew it was too far gone so I got a buzz cut. Mila took pictures and we made it a fun day and finished up by reading, "The Best Nest." As any parent knows, Mr. and Mrs. Bird need 'man hair' for their best nest. The birds around here are going to have wall-to-wall carpeting in their nests.

Thanks for the emails, phone calls and FaceBook notes of support about being bald. It is a really odd thing and I never really thought much of my hair until I saw it flying away into the yard. Your support means a lot. It is one of those weird life situations that is scary and liberating at the same time. Matt said, "It's very G.I. Jane" and I am good with that. Too bad the abs don't come with the buzz cut!

Estrogen is crack & cancer is a junkie.

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.