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!
Tuesday, August 25, 2009
Saturday, August 8, 2009
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!
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!
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