Goodbye 2009

So, I've not updated in a while. I've been trying to convince myself that I can block my health problems out of my mind. And I can, if only for a while. We went on our family trip to Europe 2 weeks ago, and no one but my family knew my situation. So, except for brief discussions with Geoff, I NEVER talked about my health, doctor appointments, or anything. And I managed to keep up with the long walking tours we went on in France and Italy and held up better than most of the other American tourists. (Not that that is saying anything given the state of our country's health). Thank you Concerta (ADHD med used for energy in my case) for giving me the energy to do so.

I went back to Boston last week. After much thought and discussion, I've decided to see a medical oncologist in Chapel Hill and Dr. Winer gave me the name of a good doctor to see in CH. I WILL eventually have to do chemo and WILL eventually, more than likely, be hospitalized. It just made sense to have a med onc that was closer than 900 miles away for when that happens. I also decided I'd rather spend my travel $ on fun trips to, I don't know, Europe, than on doctor appointments.

The next blip on the radar is getting an MRI of my cervical spine. Apparently, my persistent headaches are not due to brain mets (Thank God!) However, I have lost most feeling in 2 fingertips on my left hand (not side where lymph nodes removed) that may or may not be due to a new tumor pushing on a nerve in my cervical spine. At this point, they've only (!) found tumors in my thoracic and lumbar spine. It's a little alarming, because at some times I can barely feel 2 fingers in my left hand. But I told Dr. Winer I don't want to do anything before the new year. Got to enjoy the holidays as best I can!

Well, off to get some work done. I've not worked much lately. I have another trip this week. This time, to the wine country and SF Bay area! Happy holidays one and all!

My October trip to Boston

Well I made it back safely from the Philadelphia Airport. Barely. I will make a note to myself to not fly through that vortex again.



I saw my doctor on Thursday after having a full-body CT scan. They even did my head this time to check on my headaches that have been bothering me lately and to rule out brain mets. The scans did not show anything in my brain and some of the areas in my bones showed some improvement. So they believe that the Femara is working. While I am of course happy about that news, I have a high degree of skepticism when it comes to the scans because they have been wrong before. After all, it took over a year for them to find the bone mets that I knew were there all along. Unfortunately, I believe in listening to my body first and listening to the doctor second. I am thrilled, however, that I do not have to have any chemo right now. The doctor said we'd be doing that at some point but it can wait. Given my current level of overall fatigue and these headaches I don't want any treatment beyond the Femara for a while. I'm so excited to go to San Fran and the wine country in December too that I want to be up for that. Cancer be damned.



Luckily, I did not get as sick from the Zometa treatment this time. Which is good since it took me 29 hours to fly home from Boston!! That's a blog post in and of itself. For another time. Doc wants to see me in 7 weeks. I'm thinking of putting that off until January. For some reason, I want to focus on friends and family for the next 3 months. Again, cancer can s*** it. I nearly had a panic attack before this last doctor appointment, waiting for the scan results. Although he doesn't want to do any scans at the next appointment, I think I just need a mental vacation from all this crap for a while. The holidays take a lot of energy and I want to REALLY try and enjoy it this year instead of just surviving it, if that makes any sense.



Thanks for listening. Sorry I'm not a short poster! Hope all my friends and family are doing well!

One more thing. I'm going to start telling people most of the time that while I appreciate their questions about how I am doing I don't want to talk about it. At all. Please don't take offense at that. But every time I have to talk about it, I have to relive it. And if I'm ever able to put all this out of my mind, that's a good thing. Thanks for understanding! xoxo

The Truck that is Radiaton

Ok, I've only got 2 radiation treatments left:) Which is good, because I generally feel like I've been hit, repeatedly, by an enormous truck that has driven over me over and over again and then left me in the road only to be hit by a steamroller. AGGHHH!!!!!! I should bounce back within the next few weeks though. I go back to Boston on October 14 and see the doc on the 15th. Hopefully I won't cry in his office this time. This time, I'm bringing reinforcements. (thanks, Juhu!) I will not see the doc alone again, especially when I'm going to probably get scans again and those are always interesting, to say the least.

I guess I'm looking at chemo as the next fun treatment regimen. Hmmm. Can't wait for that. I'm not going to let that interfere with my planned trip to the wine country in December. I've not even had the energy to drink wine lately, which on my "sick o'meter" means I'm feeling pretty bad! I'll have to get over that in time to drink some stellar cabernet. Life's too short to miss out on the good wines at Joseph Phelps, etc. Maybe I get to keep my hair this time. That would be nice.

So I don't really have any wise words for everybody right now. I'll post again when I get back from Boston and recover from the Zometa and whatever else they throw at me. Halloween's just around the corner and it's almost time to decorate. It's still my favorite holiday! Makes me think of those years in San Fran when we used to go see all the thousands of people dressed up in the Castro district. Good times!

My Thoughts on Radiation

Radiation sucks. That's the best way to describe it. No offense to Dr. Maguire for the way they've lined up these toxic beams to hit my body but it still sucks. Apparently there's no way to radiate my lower back without hitting part of my bowels which causes nausea and stomach pain. So, I can add Zofran to my repertoire of pills which are so numerous I need an old lady's pill box with am/pm dividers to keep track of it all. Who'd have thought! Anyway, it's supposed to help. Considering that I woke up with stabbing pains on my right shoulder blade yesterday which is an area they can't radiate, incidentally, because it's in the field that was already radiated last year, I'm not all that optimistic that the radiation treatment is doing anything except keeping my L3 vertebrae from fracturing, which, admittedly, is a biggie. I can hardly wait to experience the fatigue that is already bad but will worsen with more treatments. Yippee!


So, the folks up in Boston are once again concerned that the pain has increased and spread. Means that the hormonal treatments are likely not working. Probably also means chemo is on the horizon when I meet with them in October. Maybe I can keep my hair this time. Woo hoo! On a more positive note....

Last night our small church group talked about the meaning of love and how we should put the needs of others, everyone, before our own. Wow, that's hard. I've always thought I got the pass on that one since it takes every ounce of energy I have to take care of myself and my children right now. But I don't think so anymore. I've found when I actually step outside my little world with its accompanying health problems and fears that even I can help other people. Maybe it's just calling to check up on a friend who's having a difficult time. Perhaps I need to let some other driver merge while I'm sitting in a traffic jam. Maybe I just need to let my overworked, stressed out husband know that I appreciate how hard he works to make a living for all of us. I don't know. We can all do something for another person. Give it a try. You might find that your expressed concern and time makes YOU feel better as well as that other person.

Have a great day one and all!

I think to myself.... what a wonderful world

So yesterday I got to look at the actual report of my scans from last week. The bone scan showed metastases all over my spine from areas in the cervical and thoracic spine and throughout the lumbar spine. The report says the L3 vertebrae is at risk for "pathological compression fracture." Hmmm. I'm guessing that, if it fractured, I'd be looking at not being able to walk or something. Not a good option. Anyway, I had a radiation planning session yesterday, a simulation tomorrow, and should start treatment on the lumbo-sacral region this week. They're not going to radiate all the areas where there's cancer because they can't. That means the cancer will remain in other problem areas, particularly the thoracic spine. But I can do that later. The main thing is preventing the scary possibility of fracture of the L3 and compression on the spinal fluid with all the other problems that could bring. My imagination does not even want to consider that too much....

Geoff is nervous, my friends are nervous about this latest turn of events. I was alarmed by reading the report simply because my last scan in may only named a few possible places of bone mets. This report named so many in my spine, ribs, hips and pelvis areas that I can't even remember them. Strangely, however, I've got such a sense of peace about all of this. I want healing and pray for it every day. I believe, however, that ultimately this is all in God's hands. And I've received a chance in my current (admittedly doped up on painkillers) state to REALLY look around at what is so precious in my life. I've got a fantastic group of friends that are always there for me and who truly round out my life in a way I did not have before all this crap started 2 years ago. I've been able to see who is really important to me. And my kids are incredible. I cuddled with them last night and, instead of thinking about all the things I needed to be doing at that moment, I could actually appreciate the depth of my love for them and their love for me. And of course, my husband and soul mate. We've always been able to communicate well, enjoy each others company, and to live together peacefully. But now, the rest of the riff/raff of life can be shaken away and we understand how important it is just to be together. Even on a normal Tuesday evening. THIS is what really matters. Not my health and not cancer; not money and big houses; not travel and fine dining; not even work.

I'm not hormonal now (I don't think I can be). But I think to myself.... what a wonderful world. Go look at the flowers today. Notice the stars in the sky tonight. Kiss your loved ones. Things can change in an instant. Carpe diem.

A bump in the road....

Wow, things can change quickly with cancer. Last Friday, I e-mailed Dr. Winer in Boston because I had increased pain in my lower back as well as troubling increased fatigue. He told me, Friday that he wanted to see me Monday (yesterday) and do another bone scan and CT scan. Whew. So I flew up on Sunday at 5:30 a.m. and came back last night at 10:30 p.m. Exhausting even for those who are in the best of health let alone painkiller using me.

Anyway, the short of it is that the cancer has spread within my bones. I don't have the full report back but it appears that this mess is all over the L3 vertebrae and other parts of my spine as well as my ribs (no surprise to me). The scary part is that I can tell Dr. Winer was surprised by this turn of events only 2 months after having my ovaries removed and 2 weeks after starting Femara. He's not ready to get rid of the Femara but is not terribly optimistic that it's going to work. I definitely need to start radiation to my spine to eliminate some of the lower back pain and prevent neurological problems from happening down the road. I'm probably looking at chemo at some point but he's not all that optimistic that that will help either because what I had less than 2 years ago apparently failed. Although Dr. Winer was upbeat and told me that he was not yet ready to give up on me, I was floored with the realization that some day he may not have any options for me. Dr. W. told me that my cancer has not behaved in a predictable fashion, which limits viable treatment options. This is scary stuff. So I sat there in the doctor's office, crying, with my suitcase, all by myself for the first time because this appointment was so last minute. Not a high point in my cancer journey. I'm far from giving up either but this is just so soon in my metastatic cancer journey to hear bad news.

Fortunately, I have too much to do to dwell on this for very long. I'm going to keep my head up, focus on the day to day options, and set up my 10-20 radiation treatments ASAP. Hopefully that will help. In the meantime, I'll keep putting one foot in front of the other just like everyone else. Take care friends and family!

First Zometa treatment

Did I mention that it's a long drive from Wilmington, NC to Boston? Well it is. On the way up, we had a leisurely (sort of) drive into NYC complete with Fifth Avenue shopping, a trip to the American Girl Doll Cafe, and tea at the Plaza hotel. All very nice. Then, off to Boston for my first Zometa (bone strengthener) treatment. Not so bad, we were told.

As usual, the folks at Dana Farber were very efficient. My bloodwork came back fine and my kidneys functioning well enough for the treatment, which apparently can cause kidney problems. As a result of my horrible hot flashes and night sweats, I can now add Neurontin to my drug repertoire, which is an anti-seizure medicine??? that is supposed to be good at treating hot flashes, especially at night. Bring it on, I say, if it will help me get some sleep.

So, geniuses that we are and so anxious to get home, we initially planned to drive through the night on Friday, the day after my Zometa treatment. Not such a good idea we realized as the week wore on and I realized that, even pre-treatment, I was probably too wonky and foggy to drive on the roads of I-95. So, we decided to leave early Friday morning the day after my treatment and try to avoid Boston traffic. All went well, at first. We left at 6:30 a.m. and made good time. Then, all of a sudden, we hit the Jersey Turnpike south of NYC. I started to feel the nausea come on and grabbed the proverbial "puke bag." After much sweating and rapid breathing as well as freezing chills and whole body bone pain, I managed to avoid actual puking. For hours, I wore a winter hat (toboggan, some would say), a jacket, pants, shirt, and sweatshirt on an August 85 degree afternoon. Interesting to the onlookers, no doubt.

Anyway, we made it to Fredericksburg, VA in one piece and to our hotel for the night. It was a rough night with a lot of flu-like symptoms, total body pain, and a fever, but I seem to be a little better today. ANYWAY, next time I get treatment, on October 15, my plan is to hit the airport immediately after my treatment because, like with chemo, it seems to take a day or two for the medicine to really take you down.

The doctor recommended that I start Femara as well, which is an aromitase inhibitor given to post-menopausal women. I, of course, fall into that category because Dr. G. took out my ovaries last month. At my June appointment, Dr. Winer was not planning to recommend any other new hormonal treatments. However, the folks in Boston were not happy that I've had increased bone pain and fatigue (nor am I!) since my ovaries were removed (theoretically, that is a form of hormonal treatment). But my tumor markers were within a normal range on this visit which may mean nothing but is certainly not bad news. I know, it's difficult to decipher all this crap.

I am seeing an acupuncture specialist this week for treatment of pain and fatigue, as well as for the hot flashes. Oh yeah, the Femara is supposed to increase joint pain and hot flashes!!! But it may also keep the cancer beast at bay, which is what this is all about.

In the meantime, we are all so excited and grateful to be home and ready for our own beds. I'll hopefully bounce back to some semblance of normal in the next few days as well. God bless you all and thank you for keeping me and our family in your thoughts and prayers!

Gratitude

This is not so much an update on my health as a need to put on "virtual" paper my thoughts.

Yesterday, as we sat in church with 2,000 of our closest friends (Port City Community Church has quite a following) I was [once again] moved to tears. Here is why:

The service was about all of our church's missions around the world, especially in Kenya. The church has a program where members can sponsor a street child in Kenya and help pay for food, clothing, shelter and schooling. Nothing surprising about any of that and I was thinking to myself, this service is not applicable to me because I have no business taking on a child to sponsor and certainly will not be going on any missions to Kenya anytime soon.

But then, our pastor started explaining why we need to be concerned about these issues around the world. He admitted to watching the commercials on television about starving children in Africa and changing the channel so that he wouldn't have to get upset by the sight of such misery. After all, don't we have enough problems of our own to focus on? I was thinking to myself: "I hurt today. Maybe I should think about getting accupuncture. Poor me. I'm feeling lousy and it's just not fair." Then he made this statement:

"Our Souls Shrink to the Size of our Greatest Concern!" I began to feel guilty.

Am I seriously in this bad of shape that my soul is nothing more than a pile of self-pity?! That's when I started crying. I started thinking back to "my one word" for the year. Our church encourages us to find one word to focus on at the beginning of the year instead of making a New Years' resolution. What was my word, what was my word [memory has been bad lately]. Oh yeah, it is GRATITUDE!!!!

Shame on me for feeling sorry for myself. Shame on all of us. No, I've not decided to take on a child in Africa for sponsorship. But I can at least look outside of the box and thank God for all that I do have. I have a lot, we all have a lot.

Is it fair that I've got stage IV cancer and two young girls that I may not live to see graduate from high school? No. But is it fair that there's 26,500 men, women and children starving in Africa every day. NO! We may not be able to go on a mission trip and fix this problem individually but at least we can have GRATITUDE for what we have.

I thank God for having two beautiful, healthy children that sometimes make me crazy, but always make my heart swell.

I thank God that the genetic testing for both the BRCA1 and BRCA2 genes showed that I don't carry those genetic mutations for having a genetic risk of getting breast and ovarian cancer and, more importantly, my girls do not either.

I thank God for having a wonderful, loving husband who continues to make me laugh even in the darkest of moments and who lets me be who I want to be.

I thank God for walks on the beach watching the waves crash on shore, just like they do EVERY DAY no matter what is going on in my life.

I thank God for being self-employed so that, when I feel like doing no work [like today :) ] I can do what I want and not worry about upsetting an employer.

I think God for all that we have been blessed with because we have food to eat and even more than one place to sleep at night.

I pray that anyone reading this can find something to be grateful for, even when the walls seem to be caving in.

Now, I really plan to wait until after my treatment next week to post again!

What I've been up to for the past 2 years....

I've hesitated to start a blog, but I guess that's what this is. I wanted to write some of my thoughts and medical updates so that others can see them without sending out an announcement to the world that seems like I'm fishing for some kind of pity.

I was original diagnosed with Stage IIB breast cancer on August 17, 2007. I was in the middle of training for the Chicago Marathon and had already done my 18 mile training run. I felt fine. I had found a lump on my right breast in the shower on August 4. A mammogram, ultrasound, and biopsy confirmed what I never thought possible with no family history of breast cancer -- that it was malignant. I opted for a bilateral mastectomy with tissue expanders which was done September 1, 2007. Little did I know that the battle had really just begun. The recovery from surgery was horrible. I felt like someone had run over my chest with a truck.
I was injected with saline (I think) several times to stretch my skin. In the meantime, I had 6 rounds of chemo (TAC) every 3 weeks. That was difficult but survivable. No vomiting! Just lots of yucky nausea. In November 2007, I had to have a revision to my plastic surgery because one of the expanders was coming out of the suture. Again, just the beginning.... I also had to have my port-o-catah stripped because it closed up and could not be accessed during chemo. That involved the radiologist going through a vein in my inner thigh?!

The adriamycin they give some breast cancer patients for chemo has to be administered through a port because if they go into your arm, you may lose the arm b/c the stuff is so toxic. The nurses administer it while wearing haz mat gear. Real nice.

I finished chemo in January 2008. Then, I started about 30 rounds of radiation. I hated radiation. I was tired, I mean REALLY tired by the end. Through all these treatments I managed to work and continue handling the books for our growing law practice. Add the kids and hubby to that and POOPED!

I got my "permanent" silicon implants in May 2008. All was well we thought...

In April 2008 I developed a staph infection. I was hospitalized one weekend and put on IV antibiotics which I got to bring home as a souvenir. So great. They didn't give me enough, however, and I ended up back in the hospital with another staph infection in June 2008. They removed my right implant. Permanently. I left the hospital and went to the store where you get to pick out your removable silicon breast. Not a good thing for swimsuit season.

Beginning in April 2008, I noticed bone pain in my ribs on my right side. The pain was constant but not debilitating. Geoff and I went to Dana Farber Cancer Institute in Boston in August 2008 where I met Dr. Eric Winer. I had a bad feeling about the rib pain but everyone assured me that I was fine and that it was highly unlikely to be a bone metastasis. Dr. Winer verified that my journey with breast cancer has been unusually difficult. Duh!

By December 2008, the bone pain remained. I went to Boston for a CT and bone scan, which revealed all kinds of issues but none suspected to be cancer. Dr. Winer sent me home with an order to take anti-inflammatories for the bone pain and to check back.

The other shoe dropped in May 2009. A CT and bone scan revealed probable bone mets on my L3 and possibly L1 vertebrae. A bone biopsy, which consisted of a radiologist hammering a needle into my vertebrae L3 (who knew how much fun it is to hear someone hammering into your bones!), revealed that it is metastatic breast cancer. So, now I have stage IV breast cancer. That means that it is treatable but not curable. I will be traveling to Boston every 2 months for bisphosphonate (probably Zometa) treatments. My ovaries were removed on June 19, 2009. Didn't need them anyway! I am convinced that I have cancer all over my ribs, sternum, spine and hips because of all of the bone pain I have in those areas. Dr. Winer has said that it doesn't really matter where else the cancer is (bone-wise) because the treatment would be the same.

For now, I'm just trying to live my life. I am working, walking, and doing pilates and light yoga regularly. No more marathons. I've learned that all those things that used to be so important to me such as running, travel, and work are not so important. What matters most is my family and appreciating every day that I can spend with them. Sometimes I wish I knew how long I will live. I'd like to go to Europe while I'm still feeling good but also want to save $ so that my family can have less debt when I'm gone. But I don't suppose it matters much anyway. It's all about living in the present moment and savoring the life God has blessed me with. I'm not afraid of dying, but I'm afraid of enduring a long and painful illness. I'm afraid of not being able to walk or take care of my kids. I'm afraid of not being able to provide for my family financially and of being a burden. But, somehow, I need to trust that God will take care of all of this even though it seems impossible. I hope that my battle will somehow help others, even if I am not leading marches or raising millions of dollars for cancer research. I hope that my legacy is a good one. Thank God for today!!

I'll post another update after my first Zometa treatment in August. If you're still reading this, that is ;)