We are breathing a huge sigh of relief! I just found out today that after 5.5 months and 18 rounds of chemo, the chemo phase of my treatment process is OVER. Phew. It’s been such a long and arduous experience, it almost seems surreal to imagine not having to go anymore. Well, we will have to go monthly for my Zomeda bone builder for 7 more months – but that’s a 15 minute infusion, so no big deal. I’m thrilled to be moving on to the next phase. I’m awarding myself a gold star for getting through chemo, and celebrated by going out to dinner with my family and enjoying a piece of 85% dark chocolate. I’m looking forward to my hair growing back and will never complain about bad hair days again – having hair makes every day a good hair day!
Also great news, the results of the PET/CT scan showed that all the cancer spots on my bones are now GONE! YAY! I started with 6, then went down to 4, then down to 1, and now, ZERO! That was the biggest concern because the bone spots can only be treated with chemo (as opposed to the breast and lymph masses which can be treated with surgery and radiation). SO, another big relief! Truly, truly a huge relief.
So, now I will get 6-8 weeks of hormone therapy – with ovarian surpression and tamoxifen, then another PET/CT scan to make sure everything is staying the same, and then surgery, then 5 weeks of daily radiation. And to think that I used to have a fear of hospitals, needles and all things medical – HA! Well, I’m certainly over that fear.
Last week, we also met with the plastic surgeon who will do my reconstruction and the ovary removal surgeon. Lots of waiting around in waiting rooms but the doctors were great and not rushed at all. They both - the plastic surgeon and the ovary surgeon took their time explaining everything in detail and providing their undivided attention to our questions. I really am feeling ready for surgery and am strangely excited to move on in this process to the next part of the triathalon.
With regard to ovary removal, evidently, for hormone receptive breast cancer removing the ovaries reduces the potential for recurrence by 50%! (Of course, they say that 3 hours a week of exercise also reduces it by 50%) They do it all laproscopically and can be done as an outpatient procedure, though I will have mine done at the same time as my other surgery so it won’t be outpatient for me. The surgery itself is kind of a crazy concept. They basically drop the ovary into a plastic baggie inside your abdomen and then pull the baggie out through your belly button. Funny, huh?
Then the plastic surgeon explained how they remove 99% of the breast tissue with the mastectomy and then put the expander under the pectoral muscle and tuck it in there. They do all of this through an incision underneath the breast (in the fold), so that the skin etc. remains intact. The expander has a titanium disc in it that they can find with a magnet. The disc tells them where the valve is located for them to inject the saline into it. Then they expand the expander with saline a little bit at a time basically so that the muscle can adjust to it being there. Then 6 months after radiation, they swap the expander out for a permanent implant. And PRESTO – New Cancer-Free Boobs!
So, all in all, between meeting the plastic surgeon and the ovary surgeon, I feel VERY informed. Most of my fears and anxiety has shifted to having confidence in the process and the outcome. So, at this point, my biggest fear is just the whole anesthesia thing - but they've really gotten so good at it that my experience at UCSF will likely be much better than I had before. This whole process has really shown how much quality of health care can vary and how important it is to seek out the best care. I am SO lucky to be at UCSF with these fantastic highly trained personable doctors. I really am getting the best care. So, now, I'm ready to get a date on the calendar and start making plans. :)
I need to thank my tremendously supportive husband, family, in-laws and friends. This has been a really long road and I have really relied on all of your cheering, your positivity, your prayers and your solid vision for a healthy future. Together, we have navigated this challenging and sometimes scary path. Through it all, with your support, we are moving forward toward freedom from cancer. Thank you, thank you for making what could have been an unpleasant experience one of hope, faith, laughter and best of all success. I couldn’t have gotten this far without your help. I feel truly blessed and I look forward to celebrating being cancer free with all of you…
Monday, August 30, 2010
Monday, August 23, 2010
Sitting in Uncertainty
So, I had my 18th chemo on Friday as well as a visit with my oncologist. It is kind of odd to think that it could have been my last chemo, but I won’t know until the scan results come back and the Tumor Board weighs in again next Monday. On the one hand, I would have liked to have marked the occasion with a little celebration somehow if it was, indeed, the last one. If it turns out not to be, then I guess it makes sense that we didn’t make a big deal about it. So, we wait and we wonder…
We took brownies and cookies that Adam made to my chemo nurse just in case it was the last one. He’s been so great through all of this. It really makes a difference to have someone take care of you that cares and gets to know what works best for you.
My oncologist was quite positive at our appointment on Friday. She said that the scan results will really help guide the next steps. If all the spots are out of my bones, we are in great shape to move forward toward surgery and radiation – with a stint of hormone therapy in between. The hormone therapy phase will help assess how well my cancer will stay under control (or gone) after surgery and radiation are complete. It will give a good indication of how effective the long term treatment with hormone therapy will be. If the cancer flares up while I’m on hormone therapy, we will know that something else needs to be done chemotherapy-wise to get it back under control rather than going off to surgery. I’m REALLY hopeful that the extent of chemo I’ve already been through in combination with the hormone therapy will be enough to keep the cancer away and that I’ll soon be declared cancer free. I would REALLY, REALLY like to be able to move forward with confidence that my body is back on track and that soon this will all be history. At the same time, I am ready to do more battle through chemo if that is what is necessary to win. Time will tell and I am remaining flexible in my plans – ha! What plans?!
So, this week, we meet with the plastic surgeon on Wednesday afternoon where we will learn all about expanders and implants. The irony that I will have fake boobs at some point is hilarious – it is so NOT me. Who would have ever thought?! We are also meeting with the oncology psychologist to hopefully get some tools for transitioning from chemo to the next phase and to prevent feeling set adrift. Then Thursday morning will be the moment of truth with the PET/CT scan. This is followed Thursday afternoon with an appointment with the ovarian removal surgeon. Phew. That’s a lot of appointments this week. I’m feeling a bit apprehensive. However, the good news is that after these appointments, I will have met with all of my medical team. Then all of them will sit down together at the Tumor Board next Monday to look at my newest PET/CT and decide where to go from here. It sure would be nice to get some dates on my calendar – but I’m not holding my breath on that either.
My acupuncturist was on vacation the week before last, so I had a substitute acupuncturist that week. I didn’t realize until the following Wednesday, after I had been so tired and felt the impacts of chemo so much more strongly than usual, that perhaps it was because of the different acupuncturist. Incredibly, after going back to my regular acupuncturist on Thursday, the effects of chemo were more normal this week and I’m not feeling as tired as I had been. It made it clear to me both how much acupuncture can truly help you get through chemo as well as how important it is to have an acupuncturist that is effective for you. They aren’t all the same. I sure do appreciate mine all that much more now.
I’ll post again once I have scan results and some idea of what’s going to happen next. Please keep me in your prayers and thoughts this week for clear scan results. Fight on!
We took brownies and cookies that Adam made to my chemo nurse just in case it was the last one. He’s been so great through all of this. It really makes a difference to have someone take care of you that cares and gets to know what works best for you.
My oncologist was quite positive at our appointment on Friday. She said that the scan results will really help guide the next steps. If all the spots are out of my bones, we are in great shape to move forward toward surgery and radiation – with a stint of hormone therapy in between. The hormone therapy phase will help assess how well my cancer will stay under control (or gone) after surgery and radiation are complete. It will give a good indication of how effective the long term treatment with hormone therapy will be. If the cancer flares up while I’m on hormone therapy, we will know that something else needs to be done chemotherapy-wise to get it back under control rather than going off to surgery. I’m REALLY hopeful that the extent of chemo I’ve already been through in combination with the hormone therapy will be enough to keep the cancer away and that I’ll soon be declared cancer free. I would REALLY, REALLY like to be able to move forward with confidence that my body is back on track and that soon this will all be history. At the same time, I am ready to do more battle through chemo if that is what is necessary to win. Time will tell and I am remaining flexible in my plans – ha! What plans?!
So, this week, we meet with the plastic surgeon on Wednesday afternoon where we will learn all about expanders and implants. The irony that I will have fake boobs at some point is hilarious – it is so NOT me. Who would have ever thought?! We are also meeting with the oncology psychologist to hopefully get some tools for transitioning from chemo to the next phase and to prevent feeling set adrift. Then Thursday morning will be the moment of truth with the PET/CT scan. This is followed Thursday afternoon with an appointment with the ovarian removal surgeon. Phew. That’s a lot of appointments this week. I’m feeling a bit apprehensive. However, the good news is that after these appointments, I will have met with all of my medical team. Then all of them will sit down together at the Tumor Board next Monday to look at my newest PET/CT and decide where to go from here. It sure would be nice to get some dates on my calendar – but I’m not holding my breath on that either.
My acupuncturist was on vacation the week before last, so I had a substitute acupuncturist that week. I didn’t realize until the following Wednesday, after I had been so tired and felt the impacts of chemo so much more strongly than usual, that perhaps it was because of the different acupuncturist. Incredibly, after going back to my regular acupuncturist on Thursday, the effects of chemo were more normal this week and I’m not feeling as tired as I had been. It made it clear to me both how much acupuncture can truly help you get through chemo as well as how important it is to have an acupuncturist that is effective for you. They aren’t all the same. I sure do appreciate mine all that much more now.
I’ll post again once I have scan results and some idea of what’s going to happen next. Please keep me in your prayers and thoughts this week for clear scan results. Fight on!
Wednesday, August 18, 2010
End of Chemo???
Friday will be Chemo #18. It is the last one I have scheduled on my calendar. It may be my last one. But it may not. I won’t know until after I have a PET/CT scan next week and then will have to wait to review it and determine whether there has been enough shrinkage to send me on to the next phase – surgery. Of course, I have learned not to rely too heavily on schedules or have expectations for what my medical team will decide. So, although I would love to celebrate Friday being my last chemo, it seems premature to do that until we know for sure.
This stage in the game really plays with your mind. As I’ve said before, there is fear of finishing chemo and ending the chemical battle against the cancer. At the same time, there is also the fear that they will recommend more chemo and that the chemical battle will continue. In anticipating either option, there is a whole cacophony of feelings associated with it – both positive and negative. So, although I have mentally gone down both paths in the last few days, I have to keep pushing myself to stay in the middle and be patient – ahh, patience. It seems to be the theme in this whole process. I’m learning, slowly, but I am learning.
So, again, I’m feeling like I am in limbo land. Apart from the chemical feeling and the regular side effects I’ve had from the chemo, I’m feeling pretty good. I’ve been really tired this week and haven’t bounced back as quickly as I have previously, but I’m still managing to do all the normal stuff with work and the kids. I was actually commenting to Marchus that I don’t remember what it feels like to not be under the chemo cloud. I’m kind of intrigued to see how much energy returns and how I feel once all of the toxins are out of my system. We’ve been eating really healthy food and taking much better care of ourselves – not that we weren’t before, but we have bumped it up a few notches. I’m looking forward to having the energy to really put in some miles on the treadmill and to be able to be out in the world more, as well as see what my hair does when it thickens up again.
As we were driving home from chemo last week, Marchus and I were talking about how much we enjoyed our Friday time together despite it involving going to the doctor and chemo. We really hadn’t spent that much time together without the kids prior to my diagnosis. We were both feeling weirdly nostalgic for the long hours together and how the end of chemo would mean the end of those kinds of days. I’m thinking we need to find a way to continue to have blocks of time together periodically – but doing something more fun than going to chemo – that won’t be hard to do.
So, as I head into chemo #18, I am aware of how far I’ve come. From the initial fear and devastation of diagnosis, to the unsettling anxiety of all of the testing, to beginning chemo back in March feeling like my body was about to be taken over by aliens, to ticking off perhaps the last chemo appointment on the calendar. It has been a long road these last 5 months on the chemo train and I am hopeful that the results will show a great first step in completing phase one of the triathlon to being cancer-free. Thanks to all for your support, prayers and reminders that life goes on…
This stage in the game really plays with your mind. As I’ve said before, there is fear of finishing chemo and ending the chemical battle against the cancer. At the same time, there is also the fear that they will recommend more chemo and that the chemical battle will continue. In anticipating either option, there is a whole cacophony of feelings associated with it – both positive and negative. So, although I have mentally gone down both paths in the last few days, I have to keep pushing myself to stay in the middle and be patient – ahh, patience. It seems to be the theme in this whole process. I’m learning, slowly, but I am learning.
So, again, I’m feeling like I am in limbo land. Apart from the chemical feeling and the regular side effects I’ve had from the chemo, I’m feeling pretty good. I’ve been really tired this week and haven’t bounced back as quickly as I have previously, but I’m still managing to do all the normal stuff with work and the kids. I was actually commenting to Marchus that I don’t remember what it feels like to not be under the chemo cloud. I’m kind of intrigued to see how much energy returns and how I feel once all of the toxins are out of my system. We’ve been eating really healthy food and taking much better care of ourselves – not that we weren’t before, but we have bumped it up a few notches. I’m looking forward to having the energy to really put in some miles on the treadmill and to be able to be out in the world more, as well as see what my hair does when it thickens up again.
As we were driving home from chemo last week, Marchus and I were talking about how much we enjoyed our Friday time together despite it involving going to the doctor and chemo. We really hadn’t spent that much time together without the kids prior to my diagnosis. We were both feeling weirdly nostalgic for the long hours together and how the end of chemo would mean the end of those kinds of days. I’m thinking we need to find a way to continue to have blocks of time together periodically – but doing something more fun than going to chemo – that won’t be hard to do.
So, as I head into chemo #18, I am aware of how far I’ve come. From the initial fear and devastation of diagnosis, to the unsettling anxiety of all of the testing, to beginning chemo back in March feeling like my body was about to be taken over by aliens, to ticking off perhaps the last chemo appointment on the calendar. It has been a long road these last 5 months on the chemo train and I am hopeful that the results will show a great first step in completing phase one of the triathlon to being cancer-free. Thanks to all for your support, prayers and reminders that life goes on…
Thursday, August 12, 2010
Off to Chemo #17!
Tomorrow will mark Chemo #17! Unbelievable, it seems. I can’t help but look forward to it with anticipation since each chemo day brings me closer to the end of the chemo phase. I am looking forward to my hair returning; to the end of the chronic sore throat; to the end of the nose bleeds; to getting some energy back; to not worrying about my blood pressure rising and just the general feeling of chemicals running through my veins. On the one hand, it will feel so freeing to put this phase behind me in a few weeks (fingers crossed!), and at the same time, there is a safety in knowing that each week I get more chemo, the fight continues. I know that switching to hormone therapy will continue the fight, but to a lesser degree – it won’t be the “big guns” that come with chemo. However, I am feeling great about moving on to the next phase and feeling really positively that as I move forward, I am one step closer to being cancer-free.
Last week, we had the opportunity to meet with an expert in chinese medicine. She is going to put together a recommended treatment plan for me using chinese herbs to support each process of my treatment. I am looking forward to learning more about this and in attacking cancer while supporting my body’s own ability to heal itself.
I continue to feel blessed to have so much support from my family and friends. I am well aware that this is a long haul and it is difficult to sustain such support over such a long period of time. I do really appreciate everyone hanging in there with me – it truly helps me in keeping my focus enjoying each day as well as encourages me to continue fighting to eliminate cancer from my body.
My dear husband has walked this path with me with such tremendous love and patience sitting through endless hours of chemo by my side as well as every doctors appointment. I feel so fortunate to have him as my partner in this fight. Truly, for better or worse, in sickness and in health – the vows of marriage are tested during times like these and you learn just how strong your commitment is.
Our boys continue to entertain. Yesterday, when given the choice of peanut butter and jelly sandwiches or smoked herring on rye rycrisp crackers, they both hands down chose the herring and rycrisp, setting aside the sandwiches. Crazy for a 2 and 4.5 year old. And so, I had to find another afternoon snack for myself. Ah well.
On a more medically related note, one of the drugs I get for chemo is called Avastin. Avastin is an anti – angiogenesis biologic. Essentially, as cancer grows, it sends out signals to the body to provide it with new blood supply by growing new blood vessels to support the cancer. Avastin prevents the growth of these new blood vessels, thus starving the cancer and preventing it from growing. Avastin was approved by the FDA for treatment of metastatic breast cancer, as well as other cancers a few years ago. My understanding is that it was thought to be so effective, the FDA shortened the approval process. Recently in the news, the FDA has been reported to be considering pulling its approval for the treatment of metastatic breast cancer. If this happens, it will make it difficult, if not impossible, for people with diagnoses similar to mine to be treated with Avastin. Though I am certainly not privy to all of the thought process behind this turn of events, I can’t help but think that this could be tragic for other cancer patients. What I do know is that a single dose of Avastin has a cost of $14,000+. My Avastin is paid for by the clinical trial I am a part of. However, for other patients who are not in a clinical trial, their insurance companies have to pick up that cost. It would seem obvious that the insurance companies have a vested interest in Avastin no longer being utilized for the treatment of breast cancer since this would reduce their financial liability. Prior to removing the approval of Avastin for the treatment of breast cancer, I would hope that the FDA would solidly analyze the benefits to patients and their quality of life prior to taking away its approval. If you would like to send a message to the FDA discouraging their removing Avastin as an approved breast cancer treatment, you can do so here:
http://www.thepetitionsite.com/3//stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer
Thanks so much! Wishing everyone a healthy week
Last week, we had the opportunity to meet with an expert in chinese medicine. She is going to put together a recommended treatment plan for me using chinese herbs to support each process of my treatment. I am looking forward to learning more about this and in attacking cancer while supporting my body’s own ability to heal itself.
I continue to feel blessed to have so much support from my family and friends. I am well aware that this is a long haul and it is difficult to sustain such support over such a long period of time. I do really appreciate everyone hanging in there with me – it truly helps me in keeping my focus enjoying each day as well as encourages me to continue fighting to eliminate cancer from my body.
My dear husband has walked this path with me with such tremendous love and patience sitting through endless hours of chemo by my side as well as every doctors appointment. I feel so fortunate to have him as my partner in this fight. Truly, for better or worse, in sickness and in health – the vows of marriage are tested during times like these and you learn just how strong your commitment is.
Our boys continue to entertain. Yesterday, when given the choice of peanut butter and jelly sandwiches or smoked herring on rye rycrisp crackers, they both hands down chose the herring and rycrisp, setting aside the sandwiches. Crazy for a 2 and 4.5 year old. And so, I had to find another afternoon snack for myself. Ah well.
On a more medically related note, one of the drugs I get for chemo is called Avastin. Avastin is an anti – angiogenesis biologic. Essentially, as cancer grows, it sends out signals to the body to provide it with new blood supply by growing new blood vessels to support the cancer. Avastin prevents the growth of these new blood vessels, thus starving the cancer and preventing it from growing. Avastin was approved by the FDA for treatment of metastatic breast cancer, as well as other cancers a few years ago. My understanding is that it was thought to be so effective, the FDA shortened the approval process. Recently in the news, the FDA has been reported to be considering pulling its approval for the treatment of metastatic breast cancer. If this happens, it will make it difficult, if not impossible, for people with diagnoses similar to mine to be treated with Avastin. Though I am certainly not privy to all of the thought process behind this turn of events, I can’t help but think that this could be tragic for other cancer patients. What I do know is that a single dose of Avastin has a cost of $14,000+. My Avastin is paid for by the clinical trial I am a part of. However, for other patients who are not in a clinical trial, their insurance companies have to pick up that cost. It would seem obvious that the insurance companies have a vested interest in Avastin no longer being utilized for the treatment of breast cancer since this would reduce their financial liability. Prior to removing the approval of Avastin for the treatment of breast cancer, I would hope that the FDA would solidly analyze the benefits to patients and their quality of life prior to taking away its approval. If you would like to send a message to the FDA discouraging their removing Avastin as an approved breast cancer treatment, you can do so here:
http://www.thepetitionsite.com/3//stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer
Thanks so much! Wishing everyone a healthy week
Thursday, August 5, 2010
Chemo #16
Tomorrow is Chemo #16 and the start of a new cycle. It was really nice to have a week off from chemo and to feel some of my energy return. This will be my 6th cycle of chemo and hopefully, my last. That means 2 more infusions after Friday’s, for a total of 18. However, when thinking about finishing up chemo, it is a little unsettling because when you are on chemo, any little thing in your body that doesn’t feel right you can just think, “well, the chemo will take care of it”. Without the chemo, it is a little daunting to think about how to react when weird things happen. I guess I’ll cross that bridge when I get to it.
Also tomorrow, we are meeting with an expert in Chinese medicine. I am hoping that she will have some Chinese herbs that will help fight to rid my body of this invader.
Last week, we had a great meeting with the Radiation Oncologist. She went through EVERYTHING very methodically and carefully with us. We were impressed that she spent so much time with us, answering every question and really describing what she was recommending and how it would be done. The one downside is that because I am “technically difficult”, I will have to go to San Francisco every day, Monday through Friday for 5 weeks. But, I figure 25 times isn’t so bad and it will be over in a flash. 5 weeks is really nothing in the scheme of things. It is funny that by the end of the meeting with the Radiation Oncologist, I was actually excited and looking forward to radiation. I am fortunate that she focuses only on breast cancer and that they have a dedicated radiation machine for breast cancer patients. Radiation will start 4 – 6 weeks after surgery. However, I won’t know my surgery date until after I meet with the other two of my three surgeons. Once again, I can’t plan…
In other news, we had a great family reunion at my house on Friday. Almost 30 members of the Hungarian side of my mom’s family came and it was GREAT to see everyone. Thanks so much to my mom and aunt for organizing it all so that I didn’t have to do anything at all. It was a thrill to hear about cousin Emily’s engagement (Woo-Hoo!) and to catch up with everyone. We saw everyone again on Saturday for the bench dedication in San Francisco as well. My favorite part was watching all the kids play together – they had a blast.
My work is heating up a bit and so it has become a bit more challenging to write these posts. But I’ll keep at it because it is helpful to me to provide updates and kind of download my thoughts each week. I hope that someone out there is reading them. Thank you for your thoughts and prayers – keep em coming!!!
Also tomorrow, we are meeting with an expert in Chinese medicine. I am hoping that she will have some Chinese herbs that will help fight to rid my body of this invader.
Last week, we had a great meeting with the Radiation Oncologist. She went through EVERYTHING very methodically and carefully with us. We were impressed that she spent so much time with us, answering every question and really describing what she was recommending and how it would be done. The one downside is that because I am “technically difficult”, I will have to go to San Francisco every day, Monday through Friday for 5 weeks. But, I figure 25 times isn’t so bad and it will be over in a flash. 5 weeks is really nothing in the scheme of things. It is funny that by the end of the meeting with the Radiation Oncologist, I was actually excited and looking forward to radiation. I am fortunate that she focuses only on breast cancer and that they have a dedicated radiation machine for breast cancer patients. Radiation will start 4 – 6 weeks after surgery. However, I won’t know my surgery date until after I meet with the other two of my three surgeons. Once again, I can’t plan…
In other news, we had a great family reunion at my house on Friday. Almost 30 members of the Hungarian side of my mom’s family came and it was GREAT to see everyone. Thanks so much to my mom and aunt for organizing it all so that I didn’t have to do anything at all. It was a thrill to hear about cousin Emily’s engagement (Woo-Hoo!) and to catch up with everyone. We saw everyone again on Saturday for the bench dedication in San Francisco as well. My favorite part was watching all the kids play together – they had a blast.
My work is heating up a bit and so it has become a bit more challenging to write these posts. But I’ll keep at it because it is helpful to me to provide updates and kind of download my thoughts each week. I hope that someone out there is reading them. Thank you for your thoughts and prayers – keep em coming!!!
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