I typically plan a full day when I head up to San Francisco for treatments. There are so many factors that can slow things down, especially if the day includes seeing the oncologist. I know she takes time with each of her patients, so she is often late. However, the wait is always worth it.
As you know, this has been a difficult summer. Whole brain radiation took a lot out of me and the side effects just keep on coming. Additionally, I have side effects from chemotherapy and side effects from support drugs. I've lost weight in spite of eating and I'm struggling to keep my protein levels up and my glucose levels down.
Within the past two weeks, I've developed a cough that makes it hard to breathe. I had an emergency CT scan today as it was suspected the cancer had moved to my lungs. Fortunately, that wasn't the case and my lungs remain cancer free. I am grateful.
However, there's definitely something happening and we don't know what it is. There appears to be compression on lymph nodes that could impact breathing. This could be a minor case of bronchitis. This could be the beginning of pneumocystitis, an infection that hits folks with compromised immune systems. I am now on a low dose antibiotic (one pill three times a week), as well as increased steroids to reduce inflammation.
The CT scan revealed progression in the liver and my liver is slightly more enlarged now (bloated). I have random bouts of vomiting (happened this morning at the clinic with about 30 seconds warning!) because the liver is pressing on my stomach. My chin is completely numb from neuropathy, as well as three fingers on each hand and both big toes. The "dead" chin was enough for my oncologist to take me off my current chemotherapy.
I will return to San Francisco tomorrow for the new chemo. For those who are counting, this is my tenth treatment regime in 4.5 years. There's some degree of trepidation for me in this because historically speaking, one tends to be on treatments for less and less time as the routine goes on. But then again there are many examples of good responses, even late in the game like this. I am familiar with the new chemo (gemcitibine and cisplatin) and have heard good things about it.
One of the key people on my treatment team is Em. She is the schedular and in spite of all the changes that happened today, she literally was right on top of them and got that CT scan on the books, lined up the radiologist to get the scan read and let the infusion center know that things were switching up. Almost as soon as my oncologist said, "No chemo today, new chemo ASAP," Em had a new schedule going. Additionally, she looked ahead through September to keep my original schedule as close to what we had in order to accommodate my family needs. She is truly an amazing professional who has made it a point to come out from the back office to meet me. She has even taken her break time to visit with me while I'm getting chemo!
I still have a month before we do a brain MRI. I have mild symptoms that could be cancer activity or just side effects, so I'm trying not to second guess anything.
I'd say the biggest physical things I'm dealing with are breathing, fatigue and food. I'm really hoping that the antibiotics and steroids kick in soon to help with the breathing.
Part of the food issue is the fact that everything tastes terrible. Side effect of chemo! I'm trying to listen to my body with the fatigue ... when it says, "sleep," then that's what I do ... I sleep. When I have trouble sleeping, I do quiet activities. I've gotten used to sleeping two or three hours at a time, regardless of what time of day it is.
The kids are in their third week of high school. Both are settling in well. Rachel has a heavy class load, but balances that with one fewer class than most of her classmates. She still enjoys her cheerleading.
Michael enjoys his classes as much as a 9th grader can and likes the flexibility of his classes. I know he and Rachel enjoy walking to school together. They are pretty amazing and are becoming quite independent. Michael is now a part of a premier soccer league (something he's always dreamed of) and has a renewed interest in the sport.
Art continues to work hard to provide for us, but is also making time to spend with us at dinner and on weekends. He and I continue to try to have a date night each weekend.
Writing is very painful for me due to nueropathy in my hands. I'm unable to work on my Bible Writing Project for any length of time. I'm reading along, though, where my writing left off ... a chapter of 1 Kings and a chapter of Psalms. I used to hate the Psalms (I considered them to be quite whiney), but now that I'm in them, I can so very clearly see myself. I think that's a true reflections of 2 Corinthians 4:16
"That is why we never give up. Though our bodies are dying, our inner strength in the Lord is growing every day."
Thank you for all you do. I wish I could write thank you notes to everyone (My Southern roots are appalled that I haven't done so!), but I just don't have the energy. Thank you for the meals, the gifts, the phone calls, the texts, the emails, the cards, but most of all, thank you for the love. Thank you for showing up.
As you know, this has been a difficult summer. Whole brain radiation took a lot out of me and the side effects just keep on coming. Additionally, I have side effects from chemotherapy and side effects from support drugs. I've lost weight in spite of eating and I'm struggling to keep my protein levels up and my glucose levels down.
Within the past two weeks, I've developed a cough that makes it hard to breathe. I had an emergency CT scan today as it was suspected the cancer had moved to my lungs. Fortunately, that wasn't the case and my lungs remain cancer free. I am grateful.
However, there's definitely something happening and we don't know what it is. There appears to be compression on lymph nodes that could impact breathing. This could be a minor case of bronchitis. This could be the beginning of pneumocystitis, an infection that hits folks with compromised immune systems. I am now on a low dose antibiotic (one pill three times a week), as well as increased steroids to reduce inflammation.
The CT scan revealed progression in the liver and my liver is slightly more enlarged now (bloated). I have random bouts of vomiting (happened this morning at the clinic with about 30 seconds warning!) because the liver is pressing on my stomach. My chin is completely numb from neuropathy, as well as three fingers on each hand and both big toes. The "dead" chin was enough for my oncologist to take me off my current chemotherapy.
I will return to San Francisco tomorrow for the new chemo. For those who are counting, this is my tenth treatment regime in 4.5 years. There's some degree of trepidation for me in this because historically speaking, one tends to be on treatments for less and less time as the routine goes on. But then again there are many examples of good responses, even late in the game like this. I am familiar with the new chemo (gemcitibine and cisplatin) and have heard good things about it.
One of the key people on my treatment team is Em. She is the schedular and in spite of all the changes that happened today, she literally was right on top of them and got that CT scan on the books, lined up the radiologist to get the scan read and let the infusion center know that things were switching up. Almost as soon as my oncologist said, "No chemo today, new chemo ASAP," Em had a new schedule going. Additionally, she looked ahead through September to keep my original schedule as close to what we had in order to accommodate my family needs. She is truly an amazing professional who has made it a point to come out from the back office to meet me. She has even taken her break time to visit with me while I'm getting chemo!
I still have a month before we do a brain MRI. I have mild symptoms that could be cancer activity or just side effects, so I'm trying not to second guess anything.
I'd say the biggest physical things I'm dealing with are breathing, fatigue and food. I'm really hoping that the antibiotics and steroids kick in soon to help with the breathing.
Part of the food issue is the fact that everything tastes terrible. Side effect of chemo! I'm trying to listen to my body with the fatigue ... when it says, "sleep," then that's what I do ... I sleep. When I have trouble sleeping, I do quiet activities. I've gotten used to sleeping two or three hours at a time, regardless of what time of day it is.
The kids are in their third week of high school. Both are settling in well. Rachel has a heavy class load, but balances that with one fewer class than most of her classmates. She still enjoys her cheerleading.
Michael enjoys his classes as much as a 9th grader can and likes the flexibility of his classes. I know he and Rachel enjoy walking to school together. They are pretty amazing and are becoming quite independent. Michael is now a part of a premier soccer league (something he's always dreamed of) and has a renewed interest in the sport.
Art continues to work hard to provide for us, but is also making time to spend with us at dinner and on weekends. He and I continue to try to have a date night each weekend.
Writing is very painful for me due to nueropathy in my hands. I'm unable to work on my Bible Writing Project for any length of time. I'm reading along, though, where my writing left off ... a chapter of 1 Kings and a chapter of Psalms. I used to hate the Psalms (I considered them to be quite whiney), but now that I'm in them, I can so very clearly see myself. I think that's a true reflections of 2 Corinthians 4:16
"That is why we never give up. Though our bodies are dying, our inner strength in the Lord is growing every day."
Thank you for all you do. I wish I could write thank you notes to everyone (My Southern roots are appalled that I haven't done so!), but I just don't have the energy. Thank you for the meals, the gifts, the phone calls, the texts, the emails, the cards, but most of all, thank you for the love. Thank you for showing up.
Meet Em, the Superwoman of Schedulars!
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