Thursday, March 11, 2010
My birthday has come and gone. I actually got to celebrate it with a large group of my cousins, as well as my brother, sister-in-law, and nephews. I have to say, I haven't had a birthday celebration with so many family members since I was a kid -- and I loved it!
My last PET scan has come and gone -- and the results were awesome! I still have metastatic breast cancer -- there are still little cancer nasties that migrated outside of where they should have stayed, BUT some of the lesions have DISAPPEARED and the "uptake" (cancer-nasty building) in the active tumor was down significantly! Now, if we can just get this anemia from the chemo under control, I might even start to feel something akin to normal!
Speaking of normal, two of my Florida Duranie Girlz came to visit me for a long weekend. I rented a car (since mine still lives in Florida) and we stayed at a hotel. I drove for the first time in over a year -- and I loved it! I actually felt as close to normal as I have since December 16, 2008 (my diagnosis day). We went to the Warhol Museum, shopped and ate in the Strip District (it's a shopping area), and shopped some more! We have been Duran Duran concert roomies in the past, so it felt kind of like that (without the actual concert). I sooooooooooooooo *heart* my friends for coming to see me -- even with 2 feet of snow on the ground. The sun seemed to follow them and it was fairly warm while they were here. The day that they left, it started to snow again. How weird is that???
I had an appointment with my oncologist this week and, despite my icky cold that I got from my baby nephew, she told me that I looked great. She asked the "are you still working" question and I told her that I was. My aunt was with me and she was as tired of hearing that question as I was, so she chimed in, "I think that it is great that she is working and involved in something. I think that working is good for her." So my oncologist decided to ask me about what I do. Of course, a big smile spread across my face as I told her what I do how it makes me happy. She told me that I am a tough girl with an amazing attitude.
Speaking of attitude. Mine is this:
1. I refuse to believe that I was middle aged at 17.
2. I refuse to give up on living because my body has decided it wants to be sick.
3. I refuse to believe that all that I have put my body through isn't somehow going to make me better -- even if better doesn't mean cancer-free.
4. I fully intend to live and be happy!
Now, I gave a lot of props to the folks who came to visit me last month. There have been others. My friend from Georgia drove up last Spring and another friend from Florida drove up just before Christmas. These very dear people contribute to above-stated attitude. And there's more...
And my brother and his family -- they have been going through all of this with me. They have been letting me live with them for over a year now. I am so blessed.
The office cheering committee sends me cards and care packages. Teachers from around the state have sent me get well and thinking of you cards. My colleagues in other states have sent me cards and cheerful emails. Former co-workers (from 7 years ago) sent me a gift and a card signed by everyone in the school -- some of whom didn't even know me. One of my projects held a workshop and had the participants sign a gigantic card. My Duranie Girlz Sunshine committee has sent me flowers, tea, etc. How can I not have a good attitude? I have people praying for me and cheering me on all the time. I am humbled by it. I shed tears of joy over it. And I respond by having the best days I can possibly have -- even on chemo days -- which is saying a lot sometimes. When there are so many pozzie vibes coming my way, I owe it to myself and to the senders of those vibes to let them affect my attitude. Of course, there are down days and "whoa is me" times, but I am so bolstered by my family, friends, and colleagues that I sometimes feel like I can fly.
How awesome is that?
Signing off to go play with my adorable nephews.
Everyone have joy -- because there is always joy to be had!
Tuesday, January 12, 2010
I feel guilty...
I have been lurking Spark, for the most part, for about a month now. I am sure that the team I co-lead has been feeling neglected. Then again, they have all been through cancer and probably understand...
I started a new chemo and it has really affected my blood counts -- both white blood cells and red blood cells. It got to the point that I had to have a blood transfusion. I was scared to death of having the transfusion, but am glad I did it. My appetite and energy level started to go up right away.
I went for the second opinion and the doctor told me that I did not qualify for his study and that he agreed with the course of treatment my current oncologist was using. My oncologist sent me for an MRI of my brain to see if I would qualify for another clinical trial. For this trial, I needed to have evidence of the cancer spreading to my brain. My MRI was clear, which is good for my brain, but it means that I don't qualify for that clinical trial either. So, my doctor is looking for another study for which I may qualify. She doesn't give up. I'm not giving up!
I guess I should back up and explain some things... I have what is called "triple negative" breast cancer. That means that the cancer is not "fed" by estrogen, progesteron, or something called HER-2 receptors. It also means that my cancer responds to chemo at first and then changes its mind. That is why we have had to postpone my surgery twice. My latest PET/CT scan shows that it is taking up residence in my liver. SCARY STUFF! The most promising medication for me is called a PARP-inhibitor. Unfortunately, the PARP-inhibitors are in clinical trials AND the FDA has put an end to what is called "compassionate use." This means that, unless I get into a clinical trial, I cannot get the medication.
I'm still not giving up!
My doctor suggested that I stop working. NO WAY! Working keeps me sane -- and I am still able to do some good for my programs. What would I do with my time if I were to stop working -- sit around and feel sorry for myself? No. Not gonna do it. I am not giving up.
My goal for right now is to maintain my weight. I lost a lot of weight over the past few months and it made my doctors worry about me. So, although my little weight tracker has a weight loss goal, I am going to try to make it stay where it is for right now. I'm hoping that, as the fatigue subsides, I can get back to exercising and build up my endurance again. Those are my fitness goals for the beginning of 2010. Hopefully, I'll be able to stick to them.
Tuesday, December 15, 2009
Well, the results of the PET/CT scan were not as promising as I had hoped and I am having more chemo. My oncologist has also applied for compassionate use of a new drug that is still in clinical trials. I am not eligible for the clinical trials because I have had carboplatin in the past (and am having it again), so compassionate use it will have to be.
I'm not going to say that this has not thrown me for a complete loop. It has. However, I am not going to let this get me down. I have to admit, though, that it has not been easy. In January, I will have been receiving treatment for a year. I never thought I would still be doing chemo at this point.
Staying positive. Praying. Living life. That is what I am doing to cope. My oncologist suggested that I might consider discontinuing to work, but I told her that working keeps me sane. Who says that???? I do love what I do and I am eternally grateful that the powers that be have been flexible and let me work via distance technology while I am fighting to get well. I cannot imagine giving up work. It would seem too much like giving up.
So... I have an appointment with another oncologist on Monday. I've had two treatments so far and they haven't knocked me over. Since I am doing chemo, all of my holiday shopping has been online to avoid getting sick. I thought that would be a bit depressing, but it has been great fun! I've gotten some great deals, too --and I am all about the bargains!
That's my story and I am sticking to it.
Wednesday, October 21, 2009
I had a conversation yesterday with a friend of mine -- someone I have known since Kindergarten. She called to tell me that she bought loads of raffle tickets in support of a breast cancer fundraiser and wanted to let me know that, although she didn't expect to win anything, she bought the limit in my honor (she called today to let me know that she won something, by the way).
Anyway, my friend told me how she thought I was sooooo much braver than she was because, if she had gotten the diagnosis, given the chemo, losing hair, being sick, etc., she would choose not to have any treatments.
Am I brave for wanting to live?
I have to admit. I never, ever thought of it that way. I've put on a brave face sometimes for friends and family, but choosing to have treatment for breast cancer was not really a choice to me -- it was a given. After some more conversation, I hope that I convinced her that choosing treatment to be well again wasn't brave -- it just makes sense -- especially since we are in our 30s and have a lot of life to live.
Makes me think, though...
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