Re Wilbur's Day 52: haha sorry huzz buzz for the terrible cookifying
Take me to a fancy restaurant? Forget about it, cuz my taste buds are wack. Plus, I am putting my top chef status on hiatus for the good of Wilbur's digestive health. I got the hint when my husband started grumbling about Jack in the Crack and Wendy's AFTER he ate dinner. It's New Year's Eve. We spent the day cleaning up the house and getting affairs in order for the new decade. Dinner was pizza with a Martinelli's toast. Cheers!
Thanks again to Laura and Suuz for the old school sleepover. Welcome back anytime!
Thursday, December 31, 2009
Monday, December 28, 2009
Sunday, December 27, 2009
Dealing with rejection
Day 46
Today, a setback; my body betrayed me. After meeting with the oncologist, I learned that my white blood cell and neutrophil counts are low, depressed by the chemo meds. I had 14 days to boost up my immune system, however on the 13th day the counts plummeted. This makes it impossible to start the next cycle until the counts are replenished to normal. Meanwhile, the doctor ordered daily injections of growth factor to stimulate bone marrow production of white cells.
I’m fightin mad, in part fueled by my oncologist’s poor excuse for a chairside manner, but this is the first time I’ve felt so off base. I think what’s coming to the surface is the part of me that’s cowardly and frightened. I’ve been focused on racing through treatment and this experience, just trying to deny the fears and anxieties and what-if possibilities. Since then, I’ve been brought to wonder … what if I blow through this episode without learning or gaining from it?
So what if my plans don’t always go as intended. Maybe it’s tough accepting obstacles in those well-laid plans. Mostly, it’s a humbling realization of how helpless I truly am. I have faith that I’m not the one designing my path. This is my time to look to God and trust in what is in store for me. What’s right for me is to revisit the situation with a new perspective. How heartening it is to realize that since I’m not doing chemo this week, I’ll be able to enjoy Christmas with the fam, eat yummy food, and stay up til the wee hours.
Today, a setback; my body betrayed me. After meeting with the oncologist, I learned that my white blood cell and neutrophil counts are low, depressed by the chemo meds. I had 14 days to boost up my immune system, however on the 13th day the counts plummeted. This makes it impossible to start the next cycle until the counts are replenished to normal. Meanwhile, the doctor ordered daily injections of growth factor to stimulate bone marrow production of white cells.
I’m fightin mad, in part fueled by my oncologist’s poor excuse for a chairside manner, but this is the first time I’ve felt so off base. I think what’s coming to the surface is the part of me that’s cowardly and frightened. I’ve been focused on racing through treatment and this experience, just trying to deny the fears and anxieties and what-if possibilities. Since then, I’ve been brought to wonder … what if I blow through this episode without learning or gaining from it?
So what if my plans don’t always go as intended. Maybe it’s tough accepting obstacles in those well-laid plans. Mostly, it’s a humbling realization of how helpless I truly am. I have faith that I’m not the one designing my path. This is my time to look to God and trust in what is in store for me. What’s right for me is to revisit the situation with a new perspective. How heartening it is to realize that since I’m not doing chemo this week, I’ll be able to enjoy Christmas with the fam, eat yummy food, and stay up til the wee hours.
Sunday, December 13, 2009
Day 37
So while I was bumming about, on Thursday mama and I went to orientation at Gilda’s Club, a haven for patients and those who have been touched by cancer. It’s founded in honor of Gilda Radner, the SNL star who passed from the ovarian type. Check them out at www.gildasclubdesertcities.org. Support groups, art classes, tai chi and meditation – it seems like a great way to connect and learn and to not feel so alone going through these experiences. As part of the routine interview, the program director asked me some seemingly innocuous questions, like ‘How has cancer negatively impacted your life?’ I mumbled something mundane, cuz really thinking positively had been de rigueur for me up until then. Still, to deepen understanding, you gotta think of all sides good and bad, so I went there. By all estimates of the end of this experience, I’ll be almost out of my twenties. In a way, I’m robbed from this era of my life; my new marriage, my new career, my healthy body, my energy are all being taken away from me or being perverted by this illness. What I wish I could do is savor every delicious, lingering moment of innocence and youth. I know I’ll be forced to once again grow up too fast. I’ve already accepted it as something that I must do, that is somehow suited to my character and will continue to shape this consciousness, but I can’t help but mourn my loss, selfishly, just a little.
So while I was bumming about, on Thursday mama and I went to orientation at Gilda’s Club, a haven for patients and those who have been touched by cancer. It’s founded in honor of Gilda Radner, the SNL star who passed from the ovarian type. Check them out at www.gildasclubdesertcities.org. Support groups, art classes, tai chi and meditation – it seems like a great way to connect and learn and to not feel so alone going through these experiences. As part of the routine interview, the program director asked me some seemingly innocuous questions, like ‘How has cancer negatively impacted your life?’ I mumbled something mundane, cuz really thinking positively had been de rigueur for me up until then. Still, to deepen understanding, you gotta think of all sides good and bad, so I went there. By all estimates of the end of this experience, I’ll be almost out of my twenties. In a way, I’m robbed from this era of my life; my new marriage, my new career, my healthy body, my energy are all being taken away from me or being perverted by this illness. What I wish I could do is savor every delicious, lingering moment of innocence and youth. I know I’ll be forced to once again grow up too fast. I’ve already accepted it as something that I must do, that is somehow suited to my character and will continue to shape this consciousness, but I can’t help but mourn my loss, selfishly, just a little.
Day 36
Wednesday, three days ago, was my first chemo. I sat in a comfortable chair, got hooked up to the i.v., then promptly fell unconscious (thanks to the nurse who gave me a dosage of Benadryl that would knock out a rhino.) Really, Wilbur and mama got the raw end of the deal, as they sat there for 2 anxious hours worrying about me and what was to come. Then, we went home. And, for the past three days, I’ve been waiting for something interesting to happen, but it’s been utterly ordinary. Finally, this morning I tossed my cookies. Quite, since I literally ate a couple chocolate chip cookies for breakfast. The Zofran I took controlled it very neatly, and I have been fine since. My husband randomly, triumphantly shouts “Zofran!” with a big smile. Haha :)
Wednesday, three days ago, was my first chemo. I sat in a comfortable chair, got hooked up to the i.v., then promptly fell unconscious (thanks to the nurse who gave me a dosage of Benadryl that would knock out a rhino.) Really, Wilbur and mama got the raw end of the deal, as they sat there for 2 anxious hours worrying about me and what was to come. Then, we went home. And, for the past three days, I’ve been waiting for something interesting to happen, but it’s been utterly ordinary. Finally, this morning I tossed my cookies. Quite, since I literally ate a couple chocolate chip cookies for breakfast. The Zofran I took controlled it very neatly, and I have been fine since. My husband randomly, triumphantly shouts “Zofran!” with a big smile. Haha :)
Sunday, December 6, 2009
[taken Oct 1 @ CUT]
Wednesday, December 2, 2009
Part 2 Series of unfortunate (and fortunate) coincidences
Some numbers on Hodgkin’s: incidence is 1 in 25,000, incidence per year in the US is 8,510 cases of Hodgkin versus 65,980 cases of non-Hodgkin lymphoma, affects ages 15-35 and over 60.
It’s random that it would happen to me. I have no family history of cancer, I don’t have Epstein-Barr, no immunodeficiency, I’m not white, and I’m not male. In fact, this described as totally beyond the realm of belief is more like it.
The best number on Hodgkin’s: 5 year survival rate of 85%.
The secret weapon to my survival: my husband. If you’ve read his blog, you know his heart and the pain this situation is putting him through. More on that later. But also this for your consideration: if we had married earlier we might have kids or pregnancy to complicate the situation, though if we didn’t get married 6 months ago, we would have delayed the wedding for at least a year. If we weren’t married, I wouldn’t be able to get his insurance to pay for treatment. If we weren’t married, I wouldn’t have this feeling of unshakeable strength from knowing I am loved. The only reason I’m getting through this is because I know I’m not alone; I have my family, my husband, and God. As an aside, I wouldn’t know God without my husband, but more on that later. Although it’s pretty tragic for this to happen 6 months into marriage, it's marriage that is the key factor in a series of unexplainable events that is going to open the path for me to live and thrive.
It’s random that it would happen to me. I have no family history of cancer, I don’t have Epstein-Barr, no immunodeficiency, I’m not white, and I’m not male. In fact, this described as totally beyond the realm of belief is more like it.
The best number on Hodgkin’s: 5 year survival rate of 85%.
The secret weapon to my survival: my husband. If you’ve read his blog, you know his heart and the pain this situation is putting him through. More on that later. But also this for your consideration: if we had married earlier we might have kids or pregnancy to complicate the situation, though if we didn’t get married 6 months ago, we would have delayed the wedding for at least a year. If we weren’t married, I wouldn’t be able to get his insurance to pay for treatment. If we weren’t married, I wouldn’t have this feeling of unshakeable strength from knowing I am loved. The only reason I’m getting through this is because I know I’m not alone; I have my family, my husband, and God. As an aside, I wouldn’t know God without my husband, but more on that later. Although it’s pretty tragic for this to happen 6 months into marriage, it's marriage that is the key factor in a series of unexplainable events that is going to open the path for me to live and thrive.
Part 1 Series of unfortunate (and fortunate) coincidences
This first post corresponds to “DAY 27” of Wilbur’s Thoughts.
Black swan
Is this the black swan of my life? Maybe, so far. And, by black swan I’m referring to the theory in which events such as this are outliers, beyond the realm of my expectation, and carry great impact. Somewhere through all this, I try to explain and rationalize its occurrence – though this seems like a typical coping mechanism for me and a way to dumb it down so I can comprehend the situation. Dumb B-cells. Some simplified pathophysiology on HL: first, the mutation of B-cell immunoglobulin gene causes the binuclear cells known as Reed-Sternberg. Key errors in the pathway of factor NF-kB is chiefly responsible for those malignant transformation and proliferation of RS cells. Also, the weak RS cells create a high level of production and inhibition of cell death for certain cytokines and factors. Those factors in turn cause the clinical manifestations of the disease. Seems to me that there’s a million tiny processes cooperating in the body at any given time, but it only takes one little mistake to turn it all against itself.
Black swan
Is this the black swan of my life? Maybe, so far. And, by black swan I’m referring to the theory in which events such as this are outliers, beyond the realm of my expectation, and carry great impact. Somewhere through all this, I try to explain and rationalize its occurrence – though this seems like a typical coping mechanism for me and a way to dumb it down so I can comprehend the situation. Dumb B-cells. Some simplified pathophysiology on HL: first, the mutation of B-cell immunoglobulin gene causes the binuclear cells known as Reed-Sternberg. Key errors in the pathway of factor NF-kB is chiefly responsible for those malignant transformation and proliferation of RS cells. Also, the weak RS cells create a high level of production and inhibition of cell death for certain cytokines and factors. Those factors in turn cause the clinical manifestations of the disease. Seems to me that there’s a million tiny processes cooperating in the body at any given time, but it only takes one little mistake to turn it all against itself.
{Background on my Hodgkin’s story}
Diagnosis was made 10/28/2009. Mine is classical, owl-eyed Reed-Sternberg ‘ed, nodular sclerosing Hodgkin’s Lymphoma stage 2A. That means bilateral lymph involvement above the diaphragm with masses no larger than 33% of the chest cavity. However, I didn’t get the requisite giant lumps or fever or chills. My right jugular vein was so cartoonishly distended it could have belonged to a steroid- pumping wrestler. On my PET/CT, two supraclavicular nodes and one mediastinal mass lit up like the alien bodies they are, greedily sucking up the glucose based tracer. The path to diagnosis included a barrage of tests, including chest x-ray, CT, PET/CT, lymph biopsy by fine needle aspiration and by surgical excision, bone marrow testing, and not to mention a barrage of blood tests that left me in superhero-like neon arm bandages for many a day. The treatment plans are for four cycles of chemotherapy, which breaks down to two sessions per month for a total of 8 sessions, and adjunct external beam radiation therapy. Infusion of choice is ABVD – drugs adriamycin, bleomycin, vinblastine, and dacarbazine. Typical side effects from treatment include fatigue, nausea, GI upset, and alopecia.
Subscribe to:
Posts (Atom)
