So – as many of you know, approximately 2 years ago, I changed my Hebrew name from Chava Rivka to Chava Raphaela. This was done in an attempt to trick the evil spirits so that any bad fate that was slated for Chava Rivka, would not happen to Chava Raphaela. Well – as you now are very aware, those darn evil spirits keep finding me regardless of the name change.
Thus, I’ve decided to step it up a notch – this past week I changed my last name. So – as of last Friday, I have dropped “Grossman” and have officially become a “Bukowski.” I know that many of you thought that this was my name or that my name was Grossman-Bukowski. Legally, my name was always “Grossman” and I just added the Bukowski to Grossman with the thought that if I ever decided to change my name that people would know who I was. When we moved to Davis and I changed industries I decided that if I was going to change my name, this was the time to do it, so I’ve been running around Sacramento just claiming that my name was Bukowski (although it really wasn’t). But now it is. The girls are thrilled to have the same last name as me and I’m really hoping that this will trick those spirits once and for all!
On another fun cancer related note – I’m heading down to Stanford at 7:00 am tomorrow for an MRI of my spine. Please put me in your prayers that they don’t find any cancer in there. Dr. Fisher thinks that my back pain is most likely just aging and the problems associated with that, but we’re getting the MRI just to make sure.
As I write this, I hear the girls playing “The Game of Life” in the next room. Listening to them makes me realize how crazy and unpredictable life can be. I am just looking forward to having my biggest worry be whether my "house floods" (the square that Ellie just landed on).
Thank you all again for your love and strength. It means more to me than I can possibly express.
Happy New Year!
Friday, December 30, 2011
Saturday, December 24, 2011
End of 2011 Update
So much has happened since my last post. I have so many partial posts saved up in my computer – started but never finished.
Rather than continue to put off posting – I’m going to give you all a quick update on what’s going on with me and this cancer journey of mine.
On Birthdays and Botox: About a month ago I celebrated my 44th birthday. Statistically, I shouldn’t have celebrated that birthday – but I did – and in style! The family, along with our dear friends, the Ellicott-Pesics, hit Disneyland to celebrate. It was pouring rain, but we had a glorious time! All day long I realized how lucky I was to be there running around and enjoying every minute. Heck – the rain kept the crowds away so although we were a little wet, we weren’t standing in line for hours!
Botox? While many 44 year olds put botox in their faces to retain their youthful looks, I am using botox in another part of my body – my sphincter muscle. As many of you know, after the take down of my ileostomy (that lovely bag I was sporting), I have been experiencing a lot of pain and pressure in my nether regions. I now have an appreciation for the debilitating impacts of chronic pain. It’s exhausting. We have tried many things to address the pain, which I’m going to spare you from reading. Our latest is to give a couple of shots of botox into the sphincter muscle. Let’s just say that I don’t think there is a more painful place to get a shot. I have dealt with a ton of needles over the past 4 years – but this tops the charts on the pain scale. However, it seems to have helped a little. I will need to go back every 3 months to get more injections. If we can’t relieve the pain this way, we may have to look at cutting my sphincter muscle (which would most likely result in incontinence – how fun) or putting the bag back on. So please, keep your fingers crossed that this works!
As for the cancer - I have mixed news. My latest scan was terrific. In fact, the top line on the radiologist’s remarks was “no evidence of recurrence or progression of metastatic disease.” The cancer that they thought was in my rectum no longer seems to be there and they’re not even sure that the spot in my spleen is even cancer. Pretty darn exciting. However, my cancer indicator number (CEA) 3 weeks ago jumped up fairly dramatically – from a 3.6 to a 5. When I had it retaken again on Tuesday, it was still at 5. This is high for me and troubling.
So – what does that mean? Quite frankly, nobody knows. I’ve talked to both of my top notch oncologists and they don’t have an explanation for it. Dr. Fisher told me that of course there’s cancer in my body (or they wouldn’t keep giving me chemo) but it may just not be large enough to show up in a scan. Therefore, he has ordered an MRI to see if they can find anything that wouldn’t pop up in a CT scan. I’ll get the MRI done in January. We’ll also keep checking the CEA and if it jumps up, then we will change my chemo regimen – either upping my current doses (I’m on both xeloda and avastin) or changing to a different type of chemo.
I continue to do all of my alternative stuff – acupuncture, Chinese herbs, qi gong, meditation (ok – so I’m not so great at this). I am doing remarkably well. My body is very strong and is fighting hard. But, this cancer is relentless and seems not to want to leave my body. But I’ll keep poisoning it and trying to boost my immune system and hopefully eventually it will just give up.
Unfortunately, I still have a lot of fear about the future. Every night, when I am singing Chanukah songs and dancing the hora with my children after lighting the Chanukah candles, I look at them and wonder if I’ll see them grow up. It breaks my heart to think that I may not be there for the major milestones in their lives. But then I stop and remind myself that I am here now and that I need to focus on this moment - on this joyous day. I tell myself that I will be there to suffer through their teenage years - and I will love every moment of it. This cancer is no match for my determination.
Please keep me in your prayers during this holiday season. Hold your families close. And may 2012 be a year of much health, love and laughter for all of you.
Rather than continue to put off posting – I’m going to give you all a quick update on what’s going on with me and this cancer journey of mine.
On Birthdays and Botox: About a month ago I celebrated my 44th birthday. Statistically, I shouldn’t have celebrated that birthday – but I did – and in style! The family, along with our dear friends, the Ellicott-Pesics, hit Disneyland to celebrate. It was pouring rain, but we had a glorious time! All day long I realized how lucky I was to be there running around and enjoying every minute. Heck – the rain kept the crowds away so although we were a little wet, we weren’t standing in line for hours!
Botox? While many 44 year olds put botox in their faces to retain their youthful looks, I am using botox in another part of my body – my sphincter muscle. As many of you know, after the take down of my ileostomy (that lovely bag I was sporting), I have been experiencing a lot of pain and pressure in my nether regions. I now have an appreciation for the debilitating impacts of chronic pain. It’s exhausting. We have tried many things to address the pain, which I’m going to spare you from reading. Our latest is to give a couple of shots of botox into the sphincter muscle. Let’s just say that I don’t think there is a more painful place to get a shot. I have dealt with a ton of needles over the past 4 years – but this tops the charts on the pain scale. However, it seems to have helped a little. I will need to go back every 3 months to get more injections. If we can’t relieve the pain this way, we may have to look at cutting my sphincter muscle (which would most likely result in incontinence – how fun) or putting the bag back on. So please, keep your fingers crossed that this works!
As for the cancer - I have mixed news. My latest scan was terrific. In fact, the top line on the radiologist’s remarks was “no evidence of recurrence or progression of metastatic disease.” The cancer that they thought was in my rectum no longer seems to be there and they’re not even sure that the spot in my spleen is even cancer. Pretty darn exciting. However, my cancer indicator number (CEA) 3 weeks ago jumped up fairly dramatically – from a 3.6 to a 5. When I had it retaken again on Tuesday, it was still at 5. This is high for me and troubling.
So – what does that mean? Quite frankly, nobody knows. I’ve talked to both of my top notch oncologists and they don’t have an explanation for it. Dr. Fisher told me that of course there’s cancer in my body (or they wouldn’t keep giving me chemo) but it may just not be large enough to show up in a scan. Therefore, he has ordered an MRI to see if they can find anything that wouldn’t pop up in a CT scan. I’ll get the MRI done in January. We’ll also keep checking the CEA and if it jumps up, then we will change my chemo regimen – either upping my current doses (I’m on both xeloda and avastin) or changing to a different type of chemo.
I continue to do all of my alternative stuff – acupuncture, Chinese herbs, qi gong, meditation (ok – so I’m not so great at this). I am doing remarkably well. My body is very strong and is fighting hard. But, this cancer is relentless and seems not to want to leave my body. But I’ll keep poisoning it and trying to boost my immune system and hopefully eventually it will just give up.
Unfortunately, I still have a lot of fear about the future. Every night, when I am singing Chanukah songs and dancing the hora with my children after lighting the Chanukah candles, I look at them and wonder if I’ll see them grow up. It breaks my heart to think that I may not be there for the major milestones in their lives. But then I stop and remind myself that I am here now and that I need to focus on this moment - on this joyous day. I tell myself that I will be there to suffer through their teenage years - and I will love every moment of it. This cancer is no match for my determination.
Please keep me in your prayers during this holiday season. Hold your families close. And may 2012 be a year of much health, love and laughter for all of you.
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