I have been home from Seattle for five weeks and I can happily admit that I feel back to my normal self.
I no longer feel like I'm going to topple over when I stand up (though I do still feel light-headed occasionally); I shower without concern of fainting; and the fogginess in my head has dissipated. I no longer need naps during the day, but I continue to sleep at least nine hours each night, and I rest as needed throughout my day.
My energy and stamina kicked into normal (high) gear about 2 weeks ago so I've been weeding out, cleaning up, and organizing my home. I have also resumed walking almost daily, restoring my endurance.
I'm still healing, but I feel about 95% back! The only deficit I see and feel is having to take breaks throughout the day to rest, which makes me wonder how I will do once I return to work as a busy nurse. But that's still weeks away...
I was discharged from SCCA (Seattle Cancer Care Alliance) on March 16th after my Hickman central line was pulled from my chest (literally!) during a simple procedure using just lidocaine. I'm happy to not have the nuisance of managing those lines anymore since I have little patience playing nurse on myself.
As I was leaving, some of the staff gathered around so I could hit the gong to celebrate a complete remission! I almost cried from the enormity of the moment and the thoughtfulness behind their gesture.
I will return to Seattle every 3 months for repeat PET scans and more research bloodwork collection, but in the meantime I am being monitored by my local oncologist.
I've had my first three weekly appointments and my vital signs have been stellar while my labs have either been normal or just below normal. I'll continue to be monitored, but now it will be every two weeks since I'm currently doing so well. Of course, any of these values can change at any time. It is not uncommon to become neutropenic, where my white cell count can drop way below normal and I'll need marrow-boosting shots to help me fight off infection. So far, I've only needed a few while in the hospital, and as of now, my WBC remains normal.
I may also require IVIg therapy that will provide antibodies so I can fend off infections should my red cell count fall below normal (so far my RBC's and platelets are just below normal but have increased nicely since a few weeks ago). I have been getting random bruises so I have to be cautious about nicks and bumps, and I have noticed red spots that come and go; perhaps my body is in detox mode, unleashing toxins through my skin.
In six months I may need to get some or all of my childhood vaccinations redone since CAR-T wipes the slate clean, and I cannot get the COVID vaccine until I'm three months out from my treatment (mid-May). I will not be able to return to work as a nurse until I'm fully vaccinated and my bloodwork remains within decent ranges. I'm also on a prophylactic antibiotic for the next six months to keep pneumonia in check, along with an oral acyclovir for a year to prevent shingles.
I finally shaved the few long strands on my head and returned to the Cancer Society to select a new wig. I am now sporting a short and sassy do whose name is Ava (I recycled Lola back to the Cancer Center when my need for her was complete), though I'm not enjoying her as much as I did Lola. My hair is beginning to grow back and I recall that once that happened last time, the wig became itchy, which is already happening.
My taste buds went on hiatus for a few weeks; everything tasted too garlic-y or vinegar-y, two flavors I love. In the first days home I kept asking my son to taste food since whatever I ate just tasted "off." I was told that they may not recover for four to six months, but happily, everything has returned to tasting normal, and I continue to eat heartily.
The neuropathy in my hands has improved, so as a natural by-product, so has my hand-writing (yay!).
I just hit the end of my two-month driving restriction so a new-found independence has been gained. My good friend, Jack, has been a loyal source of assistance; first he took me to all of my appointments in Seattle, and then he continued taking me to my local appointments, along with shopping excursions. I could not have done this long and crazy schedule without his help.
I seem to be recovering quickly, like I did after each chemo three years ago. It's hard to imagine that just 9 weeks ago I was in a hospital bed needing nursing care, and just four weeks ago I felt weak and faint.
I hope this is a upward trend I can count on since, as I've mentioned before, my labs can fluctuate and my good-feeling can plummet. My gut tells me that it won't be the case, however.
I'm itching to get back to work since I've been on medical leave since June 22, 2020! My boss has been unwaveringly loyal to me, holding my position until my return. I feel blessed beyond measure.
In fact, this entire experience has been about humility and gratitude:
Being humble enough to succumb to a cancer that I have no control over;
Being humble to accept Life on life's terms;
Feeling deep humility for the young, patient, compassionate and kind nurses from whom I've had the pleasure of learning how to be a better nurse, even after 31 years in practice;
Being humble enough to listen to my body when it insists on taking over, then giving in to what it is asking of me;
I'm humbled by the ability of my body to heal after such an assault;
Feeling deep humility and gratitude for so many people around the globe who continue to walk this path with me.
I'm gobsmacked by your loyalty and love.
Thank you for loving me so fiercely, allowing me to heal from cancer one more time.
I no longer feel like I'm going to topple over when I stand up (though I do still feel light-headed occasionally); I shower without concern of fainting; and the fogginess in my head has dissipated. I no longer need naps during the day, but I continue to sleep at least nine hours each night, and I rest as needed throughout my day.
My energy and stamina kicked into normal (high) gear about 2 weeks ago so I've been weeding out, cleaning up, and organizing my home. I have also resumed walking almost daily, restoring my endurance.
I'm still healing, but I feel about 95% back! The only deficit I see and feel is having to take breaks throughout the day to rest, which makes me wonder how I will do once I return to work as a busy nurse. But that's still weeks away...
I was discharged from SCCA (Seattle Cancer Care Alliance) on March 16th after my Hickman central line was pulled from my chest (literally!) during a simple procedure using just lidocaine. I'm happy to not have the nuisance of managing those lines anymore since I have little patience playing nurse on myself.
As I was leaving, some of the staff gathered around so I could hit the gong to celebrate a complete remission! I almost cried from the enormity of the moment and the thoughtfulness behind their gesture.
I will return to Seattle every 3 months for repeat PET scans and more research bloodwork collection, but in the meantime I am being monitored by my local oncologist.
I've had my first three weekly appointments and my vital signs have been stellar while my labs have either been normal or just below normal. I'll continue to be monitored, but now it will be every two weeks since I'm currently doing so well. Of course, any of these values can change at any time. It is not uncommon to become neutropenic, where my white cell count can drop way below normal and I'll need marrow-boosting shots to help me fight off infection. So far, I've only needed a few while in the hospital, and as of now, my WBC remains normal.
I may also require IVIg therapy that will provide antibodies so I can fend off infections should my red cell count fall below normal (so far my RBC's and platelets are just below normal but have increased nicely since a few weeks ago). I have been getting random bruises so I have to be cautious about nicks and bumps, and I have noticed red spots that come and go; perhaps my body is in detox mode, unleashing toxins through my skin.
In six months I may need to get some or all of my childhood vaccinations redone since CAR-T wipes the slate clean, and I cannot get the COVID vaccine until I'm three months out from my treatment (mid-May). I will not be able to return to work as a nurse until I'm fully vaccinated and my bloodwork remains within decent ranges. I'm also on a prophylactic antibiotic for the next six months to keep pneumonia in check, along with an oral acyclovir for a year to prevent shingles.
I finally shaved the few long strands on my head and returned to the Cancer Society to select a new wig. I am now sporting a short and sassy do whose name is Ava (I recycled Lola back to the Cancer Center when my need for her was complete), though I'm not enjoying her as much as I did Lola. My hair is beginning to grow back and I recall that once that happened last time, the wig became itchy, which is already happening.
My taste buds went on hiatus for a few weeks; everything tasted too garlic-y or vinegar-y, two flavors I love. In the first days home I kept asking my son to taste food since whatever I ate just tasted "off." I was told that they may not recover for four to six months, but happily, everything has returned to tasting normal, and I continue to eat heartily.
The neuropathy in my hands has improved, so as a natural by-product, so has my hand-writing (yay!).
I just hit the end of my two-month driving restriction so a new-found independence has been gained. My good friend, Jack, has been a loyal source of assistance; first he took me to all of my appointments in Seattle, and then he continued taking me to my local appointments, along with shopping excursions. I could not have done this long and crazy schedule without his help.
I seem to be recovering quickly, like I did after each chemo three years ago. It's hard to imagine that just 9 weeks ago I was in a hospital bed needing nursing care, and just four weeks ago I felt weak and faint.
I hope this is a upward trend I can count on since, as I've mentioned before, my labs can fluctuate and my good-feeling can plummet. My gut tells me that it won't be the case, however.
I'm itching to get back to work since I've been on medical leave since June 22, 2020! My boss has been unwaveringly loyal to me, holding my position until my return. I feel blessed beyond measure.
In fact, this entire experience has been about humility and gratitude:
Being humble enough to succumb to a cancer that I have no control over;
Being humble to accept Life on life's terms;
Feeling deep humility for the young, patient, compassionate and kind nurses from whom I've had the pleasure of learning how to be a better nurse, even after 31 years in practice;
Being humble enough to listen to my body when it insists on taking over, then giving in to what it is asking of me;
I'm humbled by the ability of my body to heal after such an assault;
Feeling deep humility and gratitude for so many people around the globe who continue to walk this path with me.
I'm gobsmacked by your loyalty and love.
Thank you for loving me so fiercely, allowing me to heal from cancer one more time.
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