A New Normal
Yesterday marked the three month anniversary of my cancer diagnosis (March 15). Three months is a short time, but somehow it feels like ages ago.
Last week I had my first CT scan since my diagnosis, and met with my oncologist on Friday to go over the results. After two rounds of an oral chemotherapy regimen (CAPTEM), plus lots of prayers, positive energy, acupuncture, and other medications/supplements, I am happy to report that there is a "marked decrease in the size of retroperitoneal and right para-aortic adenopathy. No new adenopathy identified." Basically, my cancer seems to be responding well to the treatments, and my greatly enlarged lymph nodes are shrinking.
This is good news. My oncologist is very happy with the results we are seeing, so we will continue with this treatment plan. People often ask me when I will be done with chemotherapy, and this is perhaps the most difficult question I have to answer. Unfortunately, the answer is probably "never". With the treatments currently available, there is no cure for neuroendocrine cancer. Our goal is to shrink the cancer as much as possible, and hope that we can keep it under control. I still take a LOT of painkillers because my enlarged lymph nodes press up against sensitive nerves and cause excruciating pain throughout my abdominal region. We hope that if we can shrink my lymph nodes down to near-normal size, my pain will be reduced, and I will be able to reduce the amount of opioids I take.
The other good news is that we now have some level of understanding about how my body responds to all the drugs and can (somewhat) predict how I will feel. This allows us to plan our lives a little better, and adjust to our new normal. My chemotherapy plan runs on two week cycles. I take the chemo drugs for two weeks, and then get two weeks off. My "off" weeks aren't really off, though, because I still take a lot of other medications during that time. I have learned the hard way that I have to be vigilant about taking my anti-nausea medications, even when I'm NOT on chemo, as the opioids I take for pain are also very nauseating.
One chemotherapy drug that I take (Xeloda) makes me tired, as do the pain medications. The unfortunate reality of this is that it limits my ability to be independent. I can only drive for about 10-15 minutes before my eyes start to droop and I lose focus, so I depend on other people to take me to my appointments, take my children to and from school/camps, and to run errands. We are fortunate to live in a community that has rallied around us -- so many friends and neighbors have come forward to help, including many we had never met before. So one upside of cancer is that we are meeting new people and making new friends. But not being able to transport myself more than a short distance is challenging. It requires a level of advance planning that is tiring and frustrating at times.
The second chemotherapy drug that I take (Temodar) is only taken for the last five days of my chemo cycle, but really knocks me out. In addition to the fatigue, I get a horrible burning sensation in my lungs if I try to do even light physical activity. Not a great side effect to have when I'm being bombarded with information about the importance of exercise in fighting cancer! If my body continues to respond in this pattern, I will have three weeks of feeling tired, but fairly functional, followed by one week of feeling incredibly run down. Could be better, but it could be (and has been!) a lot worse.
Mehrtash and the girls are now off of school for summer break, and we are really looking forward to some down time, and to taking a break from constantly coordinating schedules and itineraries. We are working on figuring out how to plan life around my energy levels, so that we can do fun stuff when I'm feeling well, and plan for extra help when I'm not. We're looking forward to spending a few days at the beach with Mehrtash's parents, and to going to Blacksburg for my "second 10th" high school reunion! (that's what they're calling it)
For the first four to five months of 2016 our lives were essentially in crisis mode. We did what we needed to do to survive, and had very little time or energy for processing what was happening. As the dust settles, and we adjust to the reality of cancer in our lives, the emotional impact of these difficulties has finally taken hold. I sometimes find myself on an emotional roller coaster, feeling incredible gratitude and joy in one moment, and anger and sadness in the next. I'm so grateful for the incredible blessings in our life, but still feel a sense of loss at times. I feel sad that I haven't been able to parent Ruhi the way I wanted to, or to give her the same attention her sisters had. I'm still grieving having to abruptly wean her at 10 months, when neither of us was ready. I feel sad that for several months I barely spent any time with my children, and exhausted my husband and parents with round-the-clock care. I feel guilty that so many of the family resources are being put toward managing my health problems. And of course I have fears about the unknown. When I pray, I feel a sense of peace and confidence that my body will be able to heal, but at times the uncertainty of my long-term prognosis takes its toll... not because I fear my own mortality, but because I fear leaving my children without a mother.
But these are part of the challenges of life, and as my husband often reminds me, are very small compared to what many others endure. And because of the time I lost, those moments I have with my family and friends when I am feeling well are so much sweeter. I feel more motivated to be present with my children (and everyone else), and not lost in the haze of all that is happening or needs to be done. I love that friends I haven't spoken to in years have reached out and reconnected. And I'm reminded that the experiences of life are all part of a greater spiritual journey that extends beyond our life in this physical realm.
Thank you for being part of this journey with me, and for your prayers and positive vibes. I truly believe that these things have played a critical role in the improvement of my health, and I owe you an enormous debt of gratitude.
I also ask a favor. My mother has been experiencing some health problems, as well, which are causing her great pain. If you could please remember her in your healing prayers, as well as my father, who is devoting so much of his energy to caring for both his wife and daughter, I would be very grateful!
Sending love and gratitude to you all!
Sarah
Last week I had my first CT scan since my diagnosis, and met with my oncologist on Friday to go over the results. After two rounds of an oral chemotherapy regimen (CAPTEM), plus lots of prayers, positive energy, acupuncture, and other medications/supplements, I am happy to report that there is a "marked decrease in the size of retroperitoneal and right para-aortic adenopathy. No new adenopathy identified." Basically, my cancer seems to be responding well to the treatments, and my greatly enlarged lymph nodes are shrinking.
This is good news. My oncologist is very happy with the results we are seeing, so we will continue with this treatment plan. People often ask me when I will be done with chemotherapy, and this is perhaps the most difficult question I have to answer. Unfortunately, the answer is probably "never". With the treatments currently available, there is no cure for neuroendocrine cancer. Our goal is to shrink the cancer as much as possible, and hope that we can keep it under control. I still take a LOT of painkillers because my enlarged lymph nodes press up against sensitive nerves and cause excruciating pain throughout my abdominal region. We hope that if we can shrink my lymph nodes down to near-normal size, my pain will be reduced, and I will be able to reduce the amount of opioids I take.
The other good news is that we now have some level of understanding about how my body responds to all the drugs and can (somewhat) predict how I will feel. This allows us to plan our lives a little better, and adjust to our new normal. My chemotherapy plan runs on two week cycles. I take the chemo drugs for two weeks, and then get two weeks off. My "off" weeks aren't really off, though, because I still take a lot of other medications during that time. I have learned the hard way that I have to be vigilant about taking my anti-nausea medications, even when I'm NOT on chemo, as the opioids I take for pain are also very nauseating.
One chemotherapy drug that I take (Xeloda) makes me tired, as do the pain medications. The unfortunate reality of this is that it limits my ability to be independent. I can only drive for about 10-15 minutes before my eyes start to droop and I lose focus, so I depend on other people to take me to my appointments, take my children to and from school/camps, and to run errands. We are fortunate to live in a community that has rallied around us -- so many friends and neighbors have come forward to help, including many we had never met before. So one upside of cancer is that we are meeting new people and making new friends. But not being able to transport myself more than a short distance is challenging. It requires a level of advance planning that is tiring and frustrating at times.
The second chemotherapy drug that I take (Temodar) is only taken for the last five days of my chemo cycle, but really knocks me out. In addition to the fatigue, I get a horrible burning sensation in my lungs if I try to do even light physical activity. Not a great side effect to have when I'm being bombarded with information about the importance of exercise in fighting cancer! If my body continues to respond in this pattern, I will have three weeks of feeling tired, but fairly functional, followed by one week of feeling incredibly run down. Could be better, but it could be (and has been!) a lot worse.
Mehrtash and the girls are now off of school for summer break, and we are really looking forward to some down time, and to taking a break from constantly coordinating schedules and itineraries. We are working on figuring out how to plan life around my energy levels, so that we can do fun stuff when I'm feeling well, and plan for extra help when I'm not. We're looking forward to spending a few days at the beach with Mehrtash's parents, and to going to Blacksburg for my "second 10th" high school reunion! (that's what they're calling it)
For the first four to five months of 2016 our lives were essentially in crisis mode. We did what we needed to do to survive, and had very little time or energy for processing what was happening. As the dust settles, and we adjust to the reality of cancer in our lives, the emotional impact of these difficulties has finally taken hold. I sometimes find myself on an emotional roller coaster, feeling incredible gratitude and joy in one moment, and anger and sadness in the next. I'm so grateful for the incredible blessings in our life, but still feel a sense of loss at times. I feel sad that I haven't been able to parent Ruhi the way I wanted to, or to give her the same attention her sisters had. I'm still grieving having to abruptly wean her at 10 months, when neither of us was ready. I feel sad that for several months I barely spent any time with my children, and exhausted my husband and parents with round-the-clock care. I feel guilty that so many of the family resources are being put toward managing my health problems. And of course I have fears about the unknown. When I pray, I feel a sense of peace and confidence that my body will be able to heal, but at times the uncertainty of my long-term prognosis takes its toll... not because I fear my own mortality, but because I fear leaving my children without a mother.
But these are part of the challenges of life, and as my husband often reminds me, are very small compared to what many others endure. And because of the time I lost, those moments I have with my family and friends when I am feeling well are so much sweeter. I feel more motivated to be present with my children (and everyone else), and not lost in the haze of all that is happening or needs to be done. I love that friends I haven't spoken to in years have reached out and reconnected. And I'm reminded that the experiences of life are all part of a greater spiritual journey that extends beyond our life in this physical realm.
Thank you for being part of this journey with me, and for your prayers and positive vibes. I truly believe that these things have played a critical role in the improvement of my health, and I owe you an enormous debt of gratitude.
I also ask a favor. My mother has been experiencing some health problems, as well, which are causing her great pain. If you could please remember her in your healing prayers, as well as my father, who is devoting so much of his energy to caring for both his wife and daughter, I would be very grateful!
Sending love and gratitude to you all!
Sarah
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| Ruhi on Bynum bridge. |
Thanks again for keeping us updated. Your journey is incredible and I am inspired by your ability to lean in and recognize the grief and pain while still seeing the gifts. I also hear the relief in your occasional surrender. I believe there are no accidents, Sarah, and you are gleaning the joys and gratitudes that often come from painful experiences. Keep writing!
ReplyDeleteThank you so much for your kind words and support, Susan! We are so grateful to have you in our lives! I hope that you are enjoying your summer break!
ReplyDeleteSusan said exactly what's in my heart. Thank you so much, Sarah, for giving us the gift of insight into your unique and yet at times universal experience. Your moving writing reflects the beauty of your soul. Please keep it up when you have time and energy, as I'm sure it is not only a gift to those of us who know you, but to many others who share a similar path. Sending lots of love and prayers for you and your beloved family! xo Emily
ReplyDeleteIdk what to add to what u & others have said, other than prayers, chanting light &love for u &ur entire family & support system.Will continue to support u fr a farin any way possible.
ReplyDelete