What a great run! As grueling as flying to Denver and back weekly was for two months, being off chemotherapy was really nice. I managed to stay on the study for a second cycle by the skin of my teeth; my scans following the first cycle showed everything had shrunk or stayed the same except for two 6mm ditzels.
The second cycle meant flying to Denver only every six weeks for injections and infusion. This was wonderful for my quality of life and, unfortunately, terrible for my poor liver. All the breast cancer that was beaten into sub-centimeter submission had blossomed and my liver was ensconced in a giant mass almost as large as the one initially found when I started this whole mess three years ago. Like I said, no regrets. I enjoyed six months of hair, recovering blood counts, exercise, and normalcy!
I started Ibrance (palbociclib) -- a brand new drug as of February -- with Femara (letrozole). The former (a kinase inhibitor) is taken for 21 days with, ideally, one week off, and the latter (an estrogen receptor inhibitor) is taken everyday. While on that first cycle, I think it had quite a stranglehold on these tumors. I was in a fair bit of pain that subsided once those 21 days were up. I also lost some hair, but just an all-over thinning. Now, the problem is that my bone marrow is completely beat up and not able to bounce back, so I have not restarted the second cycle of Ibrance. My platelets are low (71), so I have a lot of little bruises, and my absolute neutrophil count plummeted to 0.7. This means I could get a cut or scratch and have trouble healing and become infected.
Fortunately, I had eight shots of Neupogen tucked away in the cheese drawer of my fridge. Neupogen is a growth-factor injection that jump-starts your bone marrow to kick out some white blood cells. Unfortunately, it causes bone pain that feels like your rib cage and pelvic bones are attached to car battery and you're the one being jump-started. It's the weirdest vibratory pain and it makes me instinctively hold my breath in hopes it will stop.
I remembered when I was on Taxol years ago and I had remarkable blood counts, I was taking Turkey Tail Mushroom. I am tossing those back down again. I sure hope it isn't too late.
Speaking of too late, another young woman whom I'd "met" on Facebook has just died from metastatic breast cancer. After growing up in Iowa and working in arts and academia here in Chicago, Nicole was diagnosed with Stage IV breast cancer. She tossed that all away to move to New York and do stand-up about life with cancer (https://www.youtube.com/watch?v=jX6uQ4T-sdc) and it's just so good, especially to another formerly sexy young thing cut down by this terrible disease.
Prior to that, another woman who inspired me to keep exercising via her Stage IV Fitness Club message board on the breastcancer.org discussion groups has also died. She was an avid runner, living in Japan and France, looking for more young and active people like herself to see if it's possible to still be loving your body while hating what's going on inside of it.
The mystery to me is, at what point do you know you're about to die? They seem to be going along, doing okay, and then they disappear. That's the part that terrifies me.
Thursday, November 12, 2015
Wednesday, April 29, 2015
ONT-10/Varlilumab Clinical Trial & Coming To Terms With Being A Fat Old Lady
I'm one month in on a clinical trial of cancer immunotherapy. Every week, I fly to Denver and have four subcutaneous injections (plus a blood draw, natch') and then every three weeks, I also have an infusion. You can read the details here (https://clinicaltrials.gov/ct2/show/NCT02270372). Immunotherapy has been in the spotlight of late, and some people have been on the maintenance regimen following this trial for a long time, so it's very exciting for me to be involved. It's not a traditional chemotherapy that kills all fast-growing cells. Rather, it is an agent that encourages my own immune system to attack the cancer. The only discernible side effect I have experienced (other than owies at the injection sites) has been fatigue, although I'm guessing the researchers would argue that I'm tired from traveling across the country and back every week. It could also be cancer fatigue. We won't know until I get scanned.
I used to place a lot of faith in my ability to sense what's happening in my body, but now, I'm less sure. Before the last scans, I felt a lot of pain in my liver and thought for certain the carboplatin and gemzar regimen I was so seldom able to actually receive was not working, when in fact, it had decimated the tumors to sub-centimeter size. At least I know I have that regimen in my back pocket if this trial doesn't do anything for me.
For now, I am enjoying a life off chemotherapy. What does that mean? When I cut myself, it clots. My bald spot seems to be filling in, and I am nowhere near as winded as I was when I hardly had two red blood cells to rub together.
Now, I'm just a regular old fat lady and that's hard for me to find peace with. We went skiing in Utah three weeks ago and I twisted my knee, so I've gone to various care providers for help. They all ask me terrible questions like, "Are you an exerciser?" The fuck? Maybe that doesn't seem like a terrible question to you, but when you have lived most of your life as a very fit, active person, realizing that someone has to use such a delicately phrased question when talking to you because they literally can't tell if you spend your days sitting on your ass eating donuts stings. A lot. Compound having to face this incredulity every time I enter a doctor's office with the reality that, now that have been neutered, I have to restrict my eating to a fraction of what I have always eaten, and you have a very dysphoric individual. I am sure anyone over 60 is laughing at my anguish, but I never got the opportunity to go gentle into that goodnight that is full-blown menopause; it was lights-out on my ovaries less than two years ago. I think I'm just feeling very sorry for myself at the moment, too, because with this messed-up knee, I have not been able to be an "exerciser" at all. I am also realizing that I must look really pathetic trying to get involved with any dance, and that hurts my soul, too. I don't want to be some irrelevant, gold-shoe wearing, thirsty-ass old lady everyone is rolling their eyes at. The problem is that I am unskilled at being a 40+ year-old woman. I don't know how to be normal or what that even looks like. My life has been thrown so far out of the orbit of normalcy, that I don't even know which end is up. I'm bored and spinning. I'm uninspired to right myself. I feel lost.
Wednesday, February 18, 2015
Carbogem: So Good, It's Terrible!
I am nearing the end of my treatment with Carbogem. To the blissfully uninitiated, that is an hour-long infusion of Carboplatin, a platinum-based agent that requires a fifteen-minute infusion of Emend and Zofran (the biggest guns in antiemetics) and an hour-long infusion of Gemzar, which sounds like some kind of medieval villain.
What's this one been like? I have to say that it's been really easy to take in some ways. No hair loss. The evening following treatment, I would feel a little poisoned and might have some queasiness and fatigue, but after that, it's been pretty doable. Sometimes, I felt easily-winded due to low red blood cell counts, but aside from the bruises and petechiae all over my body, I'm rocking a Jean Seberg as Joan of Arc look.
The first three months on Carbogem went off without a hitch. I was able to get my two weeks on/one week off and it kicked the crap out of my tumors. I hadn't seen improved disease like that since maybe my first three cycles of Taxol in 2011. Then, it started to work too well. Treatments were withheld due to plummeting white blood cell counts, countered by three daily growth factor shots called Neupogen, which worked really well but, now that my bone marrow is completely wrung out, would give me violent bone pain about a fifteen minutes later. The sensation is not unlike having your pelvic bones attached to a car battery and being given a few jarring jolts of electricity every few minutes for about 30 minutes.
Eventually, I found myself only getting treated about once a month with the lowest doses of chemo possible. The white blood cells would be fine, but my platelet count would be absolutely miserable, and there's nothing that can help that. I'd get turned away to try yet again next week. Not having enough platelets means a long walk leaves your ankles and calves sprinkled with broken blood vessels. It means not shaving unless you have time to nurse your nicked knees for a long time before walking out the door. To my dancer friends, it means demonstrating the snap of a tightly connected passé results in a purple bloom inside your base leg.
During this time of recuperation, I feel that burning pressure in my back and under my rib cage mounting. Feels like the hot muzzle of a pistol that is hard to ignore some days and I have a hard time keeping my anxiety in check. Some nerve gets pinched and I discover an unrelenting twitch in my right eyelid and searing sciatic pain. Then, when my blood is strong enough for a full treatment again, I could feel the pain in my liver subside within days.
Scans set bright (or shall I say, dark) and early for Friday at 7AM. Not sure what type of treatment is on the table next. My bone marrow is so beat up that it takes longer and longer to regenerate after each whack of chemicals, so chemo isn't ideal in that respect. There's a brand new treatment called Ibrance that is taken with letrozole, but I haven't had the best of luck with hormonal therapies thus far. I'm a little dubious but willing to jump back into those supersonic hot flashes if I need to. I told my oncologist that I want to pursue chemoembolization. I am also looking into some clinical trials that would have me traveling elsewhere -- I can't believe they don't offer them in Chicago. Seriously. Thanks, Obama.
More to come hopefully sooner than later!
GEMZAR, O DARK LORD OF THE
KINGDOM OF THROMBOCYTOPENIA! I beseech thee!
Permit me to put this steely blade
to my most unholy and hirsute axilla or cast me out
of the land of all that are cleanly-shaven!
What's this one been like? I have to say that it's been really easy to take in some ways. No hair loss. The evening following treatment, I would feel a little poisoned and might have some queasiness and fatigue, but after that, it's been pretty doable. Sometimes, I felt easily-winded due to low red blood cell counts, but aside from the bruises and petechiae all over my body, I'm rocking a Jean Seberg as Joan of Arc look.
The first three months on Carbogem went off without a hitch. I was able to get my two weeks on/one week off and it kicked the crap out of my tumors. I hadn't seen improved disease like that since maybe my first three cycles of Taxol in 2011. Then, it started to work too well. Treatments were withheld due to plummeting white blood cell counts, countered by three daily growth factor shots called Neupogen, which worked really well but, now that my bone marrow is completely wrung out, would give me violent bone pain about a fifteen minutes later. The sensation is not unlike having your pelvic bones attached to a car battery and being given a few jarring jolts of electricity every few minutes for about 30 minutes.
Eventually, I found myself only getting treated about once a month with the lowest doses of chemo possible. The white blood cells would be fine, but my platelet count would be absolutely miserable, and there's nothing that can help that. I'd get turned away to try yet again next week. Not having enough platelets means a long walk leaves your ankles and calves sprinkled with broken blood vessels. It means not shaving unless you have time to nurse your nicked knees for a long time before walking out the door. To my dancer friends, it means demonstrating the snap of a tightly connected passé results in a purple bloom inside your base leg.
During this time of recuperation, I feel that burning pressure in my back and under my rib cage mounting. Feels like the hot muzzle of a pistol that is hard to ignore some days and I have a hard time keeping my anxiety in check. Some nerve gets pinched and I discover an unrelenting twitch in my right eyelid and searing sciatic pain. Then, when my blood is strong enough for a full treatment again, I could feel the pain in my liver subside within days.
Scans set bright (or shall I say, dark) and early for Friday at 7AM. Not sure what type of treatment is on the table next. My bone marrow is so beat up that it takes longer and longer to regenerate after each whack of chemicals, so chemo isn't ideal in that respect. There's a brand new treatment called Ibrance that is taken with letrozole, but I haven't had the best of luck with hormonal therapies thus far. I'm a little dubious but willing to jump back into those supersonic hot flashes if I need to. I told my oncologist that I want to pursue chemoembolization. I am also looking into some clinical trials that would have me traveling elsewhere -- I can't believe they don't offer them in Chicago. Seriously. Thanks, Obama.
More to come hopefully sooner than later!
Thursday, October 16, 2014
Spirit Teams: How to Make the Most Impact with your Pink Out Game
Since I have over twenty years of dance team involvement and expertise under my belt, a sizeable majority of my Facebook friends fit into one or more of the following categories: current and former dancers or cheerleaders, coaches, choreographers, contest judges, spirit coordinators, and employees of the industry that keep the whole world of cheerleading and dance afloat. As such, my News Feed is always full of photos and updates commemorating tryouts, visits from choreographers, travels abroad to teach or judge, and of course, gameday pictures. These status updates generally instill me with a treasured connectedness, and I have welcomed this over the last nine months when I often felt disconnected from the dance team world. Lately, I've seen lots of sideline shots with pink poms and ribbons attached to uniforms along with loads of pink athletic gear, and I feel particularly connected to these images.
You see, after working through Stage IIa breast cancer (with a newborn and a toddler in tow) and later, through a year of treatment for Stage IV breast cancer, I decided to retire at the ripe old age of 41. Giving my all to my hard-won and much-cherished sales position in the dance team industry and trying to survive a grueling chemotherapy regimen were no longer compatible. Even as I get longer in the tooth and wider at the waistline, I have continued to think about a way to stay in the dance world's orbit. Why? I recognize this compulsion is purely and embarrassingly selfish; I miss making an impact in the lives of others!
Why are there so many men and women of a certain age who continue to work with cheerleaders and dancers? We are all chasing the buzz we caught after our very first experience teaching a class. We miss the power of leading a crowd to fever-pitch fury when the score is tight and the players are growing weary. We all jones for the payoff from watching a team passionately embody an idea that sprang from our own heads to achieve their own personal success. We even miss the admonishment to watch how we behave on college campuses, in restaurants, and even in the local mall because someone who once stood in front of us, sweating, vulnerable, and desperate to please, may recognize us and geek out a little. We are all addicted to the impact we've had on others! Today, on the 16th day of "Pinktober", I am writing this missive in efforts to mobilize those I've had the honor of impacting in the past, to help impact my life.
_____________________________________________
If your team or your school is participating in Breast Cancer Awareness Month, here is a suggestion for ways to really make a difference with your upcoming Pink Out Game:
When buying pink poms, pink spirit gear, or even shopping around for pink football gear, notice whether or not any proceeds go toward breast cancer research. If you don't see anything about a portion of sales being donated to the actual cause for which you are raising awareness, reach out to that company and create a dialogue. Are they doing their part in the fight against the disease, or are they merely enjoying a profit from selling pink gear, emblazoned with slogans they themselves are not actually supporting? Unfortunately, even the most well-respected purveyors are not donating money to breast cancer research.
Until they do, consider making your own! Invite your athletic teams to take a little time out of regularly scheduled practice and have a Pink Party. Tie-dye some plain athletic gear magenta, fuchsia, and powder pink. Ask a few parents or teachers to volunteer their time to serve healthful pink pre- or post-workout treats like pink fruit (watermelon, pink grapefruit, and Pink Lady apples) or some DIY pink energy drinks.
You ask, Why not just pay the money for the sharp pink spirit gear and get on with it? There is tremendous educational merit to teaching these young, influential people about conscious commerce. To raise awareness, you need to begin with those that are doing the raising. Speaking of raising, your team probably raises funds to pay for all their gear, but even if the school pays for the Pink Out, I'm sure the administration will appreciate your conscientious budgeting.
Here's another harsh reality: merely wearing pink at a game does not, in fact, raise breast cancer awareness. It only serves as a visual indicator to your crowd that something different is going on. Don't leave your fans hanging: maximize your community impact while you have the chance!
1) Contact your area florist for pricing on corsages or boutonnieres with reasonably-priced pink flowers (carnations, Gerbera daisies, chrysanthemums) to establish the cost of community participation. See if your florist can give you a volume discount. Maybe your florist can write off a portion of the expense on his or her taxes as well.
2) For several games prior to the Pink Out, set up a table near the ticket booth or the concession stand and man it with uniformed teammates or parents. For the cost of the flowers plus money that will be donated to a named breast cancer research organization, invite your fans to acknowledge people who are involved in the fight against breast cancer. Participants need to provide the person's name, how they are involved, and contact information (phone number and/or email) for this person as well as the cost you've calculated to cover the flowers and the donation. You can include people who have completed treatment, people who are still in treatment, and people who have succumbed to breast cancer; in the case of the latter, also ask for the name and contact person of a spouse or child who will be acknowledged on his or her behalf. You can also acknowledge nurses, doctors, and regular volunteers at your local hospital's breast oncology unit. Make sure to provide the game announcer a script about what you are doing so your fans are aware and can participate.
3) Contact the people to be acknowledged and let them know they have been nominated to be acknowledged at this year's Annual Pink Out Game. They will be announced and invited to come to the field or court to receive a boutonniere or corsage from an athlete. Ask the honorees to meet to the side of the field or court when there are 15 minutes left on the clock before halftime. Be sure to put them in the order you plan to have them announced. If they cannot or do not wish to attend, don't forget to make a list of these people whom you will acknowledge in name only.
4) After the last game before the Pink Out, turn in the total amount of boutonnieres and corsages to the florist and schedule the pickup for the flowers. Make sure to subtract the number of honorees who will not attend and send 100% of that person's donation to your organization of choice.
5) On Pink Out Day, wear all your pink gear! Have the admission booth hand out a flyer to each person with an explanation of the Pink Out ceremony and a list of the honorees, participating businesses and organizations and on one side, and then ten lesser known facts about breast cancer on the other side. On the flyer, be sure to remind the honorees to meet at 15 minutes left on the clock prior to halftime!
6) Did the proceeds of any of the gear go toward a breast cancer research fund? Before listing the honorees, have the announcer mention this to the audience, citing the company and research fund's name. It goes without saying that you should ask the announcer to give tremendous thanks to your florist. Acknowledge these companies who are truly in the fight for the cure!
6) Announce the honorees one by one. Have them take the field where they will receive their flowers from an athlete. Have a parent with a good camera? Take a group picture of all the honorees. Also, take each honoree's photo with the athlete who gave them their flowers and either email the photo or print it off and send it to the honoree in thanks for their participation and their fight to end breast cancer!
Too late, you say, October is almost over. Guess what? It's never too late. If you can't make it happen this football season, begin talks with your basketball coach and athletic director about doing it in the wintertime. If that won't work, collar your baseball or softball coach. Remember that breast cancer has no season.
Otherwise, is there another cause that hits close to home? Is a teacher or athlete's parent in the fight of their life? Research other awareness months and their corresponding ribbon colors. Look at other causes that affect your community (autism, ALS, muscular dystrophy, multiple sclerosis) and use the idea above to create meaningful awareness in your school and community.
You see, after working through Stage IIa breast cancer (with a newborn and a toddler in tow) and later, through a year of treatment for Stage IV breast cancer, I decided to retire at the ripe old age of 41. Giving my all to my hard-won and much-cherished sales position in the dance team industry and trying to survive a grueling chemotherapy regimen were no longer compatible. Even as I get longer in the tooth and wider at the waistline, I have continued to think about a way to stay in the dance world's orbit. Why? I recognize this compulsion is purely and embarrassingly selfish; I miss making an impact in the lives of others!
Why are there so many men and women of a certain age who continue to work with cheerleaders and dancers? We are all chasing the buzz we caught after our very first experience teaching a class. We miss the power of leading a crowd to fever-pitch fury when the score is tight and the players are growing weary. We all jones for the payoff from watching a team passionately embody an idea that sprang from our own heads to achieve their own personal success. We even miss the admonishment to watch how we behave on college campuses, in restaurants, and even in the local mall because someone who once stood in front of us, sweating, vulnerable, and desperate to please, may recognize us and geek out a little. We are all addicted to the impact we've had on others! Today, on the 16th day of "Pinktober", I am writing this missive in efforts to mobilize those I've had the honor of impacting in the past, to help impact my life.
_____________________________________________
If your team or your school is participating in Breast Cancer Awareness Month, here is a suggestion for ways to really make a difference with your upcoming Pink Out Game:
When buying pink poms, pink spirit gear, or even shopping around for pink football gear, notice whether or not any proceeds go toward breast cancer research. If you don't see anything about a portion of sales being donated to the actual cause for which you are raising awareness, reach out to that company and create a dialogue. Are they doing their part in the fight against the disease, or are they merely enjoying a profit from selling pink gear, emblazoned with slogans they themselves are not actually supporting? Unfortunately, even the most well-respected purveyors are not donating money to breast cancer research.
Until they do, consider making your own! Invite your athletic teams to take a little time out of regularly scheduled practice and have a Pink Party. Tie-dye some plain athletic gear magenta, fuchsia, and powder pink. Ask a few parents or teachers to volunteer their time to serve healthful pink pre- or post-workout treats like pink fruit (watermelon, pink grapefruit, and Pink Lady apples) or some DIY pink energy drinks.
You ask, Why not just pay the money for the sharp pink spirit gear and get on with it? There is tremendous educational merit to teaching these young, influential people about conscious commerce. To raise awareness, you need to begin with those that are doing the raising. Speaking of raising, your team probably raises funds to pay for all their gear, but even if the school pays for the Pink Out, I'm sure the administration will appreciate your conscientious budgeting.
Here's another harsh reality: merely wearing pink at a game does not, in fact, raise breast cancer awareness. It only serves as a visual indicator to your crowd that something different is going on. Don't leave your fans hanging: maximize your community impact while you have the chance!
1) Contact your area florist for pricing on corsages or boutonnieres with reasonably-priced pink flowers (carnations, Gerbera daisies, chrysanthemums) to establish the cost of community participation. See if your florist can give you a volume discount. Maybe your florist can write off a portion of the expense on his or her taxes as well.
2) For several games prior to the Pink Out, set up a table near the ticket booth or the concession stand and man it with uniformed teammates or parents. For the cost of the flowers plus money that will be donated to a named breast cancer research organization, invite your fans to acknowledge people who are involved in the fight against breast cancer. Participants need to provide the person's name, how they are involved, and contact information (phone number and/or email) for this person as well as the cost you've calculated to cover the flowers and the donation. You can include people who have completed treatment, people who are still in treatment, and people who have succumbed to breast cancer; in the case of the latter, also ask for the name and contact person of a spouse or child who will be acknowledged on his or her behalf. You can also acknowledge nurses, doctors, and regular volunteers at your local hospital's breast oncology unit. Make sure to provide the game announcer a script about what you are doing so your fans are aware and can participate.
3) Contact the people to be acknowledged and let them know they have been nominated to be acknowledged at this year's Annual Pink Out Game. They will be announced and invited to come to the field or court to receive a boutonniere or corsage from an athlete. Ask the honorees to meet to the side of the field or court when there are 15 minutes left on the clock before halftime. Be sure to put them in the order you plan to have them announced. If they cannot or do not wish to attend, don't forget to make a list of these people whom you will acknowledge in name only.
4) After the last game before the Pink Out, turn in the total amount of boutonnieres and corsages to the florist and schedule the pickup for the flowers. Make sure to subtract the number of honorees who will not attend and send 100% of that person's donation to your organization of choice.
5) On Pink Out Day, wear all your pink gear! Have the admission booth hand out a flyer to each person with an explanation of the Pink Out ceremony and a list of the honorees, participating businesses and organizations and on one side, and then ten lesser known facts about breast cancer on the other side. On the flyer, be sure to remind the honorees to meet at 15 minutes left on the clock prior to halftime!
6) Did the proceeds of any of the gear go toward a breast cancer research fund? Before listing the honorees, have the announcer mention this to the audience, citing the company and research fund's name. It goes without saying that you should ask the announcer to give tremendous thanks to your florist. Acknowledge these companies who are truly in the fight for the cure!
6) Announce the honorees one by one. Have them take the field where they will receive their flowers from an athlete. Have a parent with a good camera? Take a group picture of all the honorees. Also, take each honoree's photo with the athlete who gave them their flowers and either email the photo or print it off and send it to the honoree in thanks for their participation and their fight to end breast cancer!
Too late, you say, October is almost over. Guess what? It's never too late. If you can't make it happen this football season, begin talks with your basketball coach and athletic director about doing it in the wintertime. If that won't work, collar your baseball or softball coach. Remember that breast cancer has no season.
Otherwise, is there another cause that hits close to home? Is a teacher or athlete's parent in the fight of their life? Research other awareness months and their corresponding ribbon colors. Look at other causes that affect your community (autism, ALS, muscular dystrophy, multiple sclerosis) and use the idea above to create meaningful awareness in your school and community.
Monday, August 04, 2014
This is my liver on Halaven. Any questions?
See that bulge I'm pointing at? That's one pissed-off liver. Yeah, I don't think this is working.
For the last six weeks, I have been on Halaven. This is a weekly shot administered via my port and one cycle is "two weeks on, one week off." At first, it was chased with an Xgeva shot only, which is for maintaining bone density. Halaven is notoriously hard on one's neutrophils and blood potassium, resulting in neutropenic fevers and hypokalemia. I've endured two cycles and I'm ready to move on.
After the first treatment, I was mildly nauseated and had two days of low grade fever which went away with antipyretics. This is a snap so far, I thought! After the second week, on the Fourth of July, I went to the ER with a 100.8 fever that would not subside and stayed there for two nights, receiving cefepime IV and regular doses of Tylenol. The bone pain was, at points, excruciating. My bone marrow was going crazy trying to increase my white blood cell count, and my femurs, sacrum, ilia and spine were aching so intensely. I was discharged with some Cipro and told to get three daily Neupogen shots the following week. Neupogen is a cytokine which boosts the body's immune response resulting in increased white blood cell count. I'd pull up to Prentice Hospital's valet, dash up to the Maggie Daley on the fourth floor, get jabbed in my spare tire and head back north on Lake Shore Drive. By the second and third days, I really had to find something deep inside me to want to make the drive for more misery. The bone pain was akin to being electrocuted and when I'd get up to move from being seated, I'd shudder and shout out from the sensation of being tazed. Normally, I pick out a cute outfit with accessories and wear makeup (but no head covering) to the hospital. I walk in with perfect posture and confidence, smiling to anyone with whom I would make eye contact. For my whole life before cancer, people stared at me for being a beautiful and confident girl. With cancer, I am stared at for being bald, for having a weird lump with a tail under my clavicle, for seeming to be missing facial features such as eyebrows and eyelashes, and I am a hideous oddity. Going to the hospital, however, I usually enjoy taking care of my appearance. We are all bald and misshapen there, so if anyone is staring, it may be because they're actually appraising my appearance and confident carriage and not gawking at my stubble and bumps. Driving to the hospital for these shots, though, I wore cut up t-shirts and sweatpants with a hat low on my bare face. I'd leave briskly clutching my pinched tummy, making no eye contact so, once I retrieved my car from valet, I could sob alone in my car driving past all the beautiful and carefree people on Oak Street Beach as I made my way home.
After the second cycle, I received a Neulasta shot which, like the Neupogen, boosts white blood cells, but prophylactically. Again, I was plagued with low grade fevers and bone pain, and again, I found myself in the ER after spiking a 101.1 fever. No one could seem to arrive at the reason for my fever -- an infected port? Pneumonia? Pulmonary embolism? -- and I didn't get to my room until after 3am after eight hours waiting. My WBC was rocking out and much higher than normal, likely causing my fever. I was hooked up to a vancomycin drip which promptly resulted in what is called red man syndrome. I absentmindedly scratched my head so much in its throes that I had to rock a bandage on the back of my head like Ving Rhames in Pulp Fiction.
Since returning home, I notice I can't eat very much without feeling stuffed to the gills. I can feel my liver pushing into my stomach. I take an NSAID and that seems to help me some. I am not sure what is next, but I hope it doesn't involve steroids. I'm already bald and feeling ugly enough.
Thursday, June 19, 2014
steady but bald summer likely ahead
I've been on Arimidex for the last three months or so. This is an aromatase inhibitor, or a hormonal therapy, and it blocks the estrogen receptors on the cancer to starve it of estrogen that it loves so much. Seemed like a layup for me since my estrogen receptivity was 60%, plus I had my ovaries out, so any lingering estrogen floating around would be blocked from aiding the enemy. The TCM practitioner I saw warned me that any measures to restrict my hormones (surgery, AIs, etc.) would not work for me. Hm.
Anyway... at first, I really thought it was working! I immediately noticed that the tumors were retreating. I could feel the bottom of my ribcage jutting out again. No more muscle cramps in my back from the tumors pressing against them. I was also beginning to take Ritalin for the fatigue associated with Xeloda. That Xeloda just kicked. My. Ass. I couldn't not nap every day and I was really miserable about that. The starter dose of Ritalin was helping me feel like myself again.
Uh, except for around the full moon. For at least three months in a row, I would feel my energy and overall mood rise to an 8 out of 10 (where I prefer to be) but then crest at a 10 just before the moon was complete. I would observe myself becoming more and more manic, but I couldn't stop. It was like riding a bike downhill and not having brakes. Then, on the full moon, I would have headaches, earaches, and an animalistic rage. The night always ended with me in shuddering sobs, feeling that I was helpless. A few days later, I would have no recollection of those emotions that just destroyed me. I would try to conjure them up and get nowhere.
I saw the oncology department's psychologist and told her about this trend. Obviously, she made no comment about my emotions being correlated with the lunar cycles, but she did ask me to chart the moods in my calendar to see if I could somehow anticipate and possibly stave off a breakdown. She sent me to the department's psychiatrist, a Turkish man with continuous facial tics. I sat watching him grimace and wince, and I also had no control over my hands, nails ceaselessly picking and peeling my wonky post-Xeloda fingers. My tongue could not stop thrusting against the back of my teeth. I felt like Bruce Banner; my arms were clenching and my heaving silicone bosom was about to explode through my t-shirt. Maybe it's too much coffee, I asked. Off the Ritalin, he said. Off the Ritalin and off the Effexor. Let's go back to Zoloft. That worked well a long time ago.
"Uh... what about withdrawal side effects? How do I mitigate those? Benadryl?"
Wincing, "I don't know about using Benadryl. What side effects are you concerned about?"
"Uh, feeling like my brain is being electrocuted? Like my tongue is hooked up to a car battery and being jumpstarted? Like someone is shaking my head violently as I go about my day?"
"Oh. Well, just open the caplets up and start taking less and less each day. And at the same time, start ramping up on the Zoloft. No Ritalin will make you (rolls eyes and slumps in seat) so be aware that that will happen." Rad.
What I realized upon further research was taking all these meds had me on a one way train to Serotonin Syndrome. I also think this cocktail really exacerbated any manic-depressive tendencies I have. Don't get me wrong -- I LOVE when I get that sense of flow when I move from project to project to project seamlessly and get loads done -- but I also know it will end badly. All I want is to be level. Steady. A 7 or an 8 on the Richter scale.
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So yeah. I quit Ritalin first and was a lazy blob all weekend. This sucked for everyone because Mommy was useless. I felt like some kind of junkie, splayed out and sweating in my bed. Then, I did a week or so of titrating my Effexor, opening up the caplets and dividing all the tiny beads equally into shot glasses, first in half, then in thirds. A Benadryl at night to keep the zappy-guns from shooting me in the face. One little pale blue Zoloft in the morning to keep me flying right, albeit with a little bit of motion sickness and, er, gastrointestinal issues. I'm proud to say that I am off the Effexor completely. The miserable withdrawal symptoms are known to bring people to their knees, and I am glad I am done with that. Eff you, Effexor.
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In addition to the change in medication, I also got lazy about taking my supplements. Casey found this article about the Super Cocktail of herbs, spices and supplements and I was taking them with no trouble for a while. Then we had a few weeks of super-busyness -- camping, wedding, last week of school -- and I kept putting off the process of counting out all the pills and placing them all in the pill boxes. Then, I began noticing the pain and feeling of fullness. Finally, I could again feel tender lumps under my ribcage. After a full day of scans, I ate my first non-barium meal and then marched my buns over to medical records where I picked up a CD of the images and the printed reports. Booyah.
I'll be going in on Wednesday to get the new regimen. The NP tells me that Taxol will be back on the table as an option since it worked so well for me last year. Losing my hair is a bummer, especially since I FINALLY like what it's been doing and have found someone to keep it that way, but worse is the steroid's effects on my face and body. Ugh. I wish I could forgo that part.
Wednesday, March 19, 2014
Springtime and WWC
(Written on 3/19/14)
As the weather became more and more unforgiving here in Chicago, I became less and less able to withstand the crippling fatigue and palmar-plantar erythrodysesthesia in my hands. The Ritalin gave me some zing for a while, but I'd do a whole lot around the house and my fingers would pay dearly with deep, stinging cracks on the tips that are, to this day, not all healed. It doesn't seem like such small wounds would render a person so miserable, but using my hands became just unbearably painful. I tried every trick in the book -- bandaids, Neosporin, Vaseline, bag balm, Krazy Glue (Kragle!), cotton gloves to bed, even plastic gloves all day around the house -- and I finally messaged Kelly to see if there was anything else I could do to help my hands heal.
At the beginning of March, I went in for an appointment to see Dr. G and was advised to take five X instead of six to lessen the toxicity levels. I mentioned to my Dr's fellow palpating me that I was feeling a bit of pain to the right of my spine, but she said she couldn't rule out that it wasn't due to anything musculoskeletal. Then, when I reclined back with my arms over my head and exhaled so she could feel me from the front, she pressed below my ribs, just to the right of center and I calmly said, "Ow." Orders were placed for me to have scans at the end of March and I was to take some Neurontin for the pain in my hands at night.
Something didn't feel right to me and my liver was feeling pretty mad about something. I just knew something was up. I was suddenly aware of my liver again. When I did a seated forward bend, my liver was getting mashed up into my chest and I would have an upper abdominal muscle spasm. So weird, right? I could also feel some angry swelling at the front so I bumped the scans up. My bone scan was cancelled because someone dropped something radioactive in the Nuclear Medicine department (lolz), so people were walking around with Geiger counters beeping and I was ushered into a conference room. After an hour, the nurse who accessed my port came in and told me to just reschedule the bone scan instead of pushing everything on the schedule. I just ended up getting the CT, which showed that the Xeloda had shrunk or stabilized all of the cancer that they've seen before, except there were three new subcentimeter lesions. Sumbitch. I knew it.
Casey and I went back in the following Monday and Dr. said that, since there was not a massive amount of new growth and that the rest of the cancer was pretty stable, I could have the choice of doing another type of injectable chemo (Eribulin) or I could try an aromatase inhibitor (Arimidex) which keeps any estrogen left floating around in my bloodstream from feeding my cancer. I was not about to jump back into losing my hair with the Polar Vortex lingering so I decided to give the AI a try. It's a tiny pill I take every night (not unlike a birth control pill). Also like a BCP, it makes you FUCKING CRAZY. As in, every full moon, I completely lose my shit. I plan to take two Ativan next time and sleep instead of cry and beg death to take me.
You know those Facebook shares you see where someone types, "If you don't cry when you watch this, your soul is dead and you are an unfeeling robot"? Up until that point, I was the unfeeling robot, watching videos of cute little children being reunited with their fathers coming home from the war with zero vagal stimulation. Without estrogen, I had become scarily adept at turning on and off my emotion. Upon starting Arimidex, I became... weepy and sentimental!
Another annoying side effect to the AI (or, hell, maybe living life with uncurable cancer) is that my reality catches up with me more often, no matter how hard I try to outrun it. Those are the days I really realize, Oh, I am totally not going to be a grandmother. Oh, shit. I just realize that I got cheated and things are not going to be better, only worse. I am lying here on my beloved beat-up couch, pinning cute shoes to my Pinterest Wishlist board like it matters but it doesn't. I'm tired, crabby, hungry and slowly but surely resembling a tree stump, and for what? What is the point? Oh yeah, life insurance...
Those are the days I want to stop the charade of being that Wacky Mom I see on the playground who whisks her progeny from school to the bakery for a cookie and then off to the park district, sweating and grinning and trudging on. I want to just go to a room that is quiet and brace myself for death to come and quickly snatch me away before I feel any remorse about whom I've left behind. It's some dark shit, huh? Well, I feel it. Doesn't help that, literally every day, I hear of someone who has just been diagnosed or has just died of cancer. It feels like World War C and I've already been bitten.
I've begun taking my Chinese Herb pills with more frequency... or at least attempting to. I've inquired about Yttrium 90 radioembolization. Turns out that, anatomically, I am a candidate and the doctor at Northwestern is possibly the number one doctor in this area, but getting insurance to cover this procedure is not always possible. Casey is transitioning jobs, too, so even though the doctor's NP has offered to check my insurance, we'll be on a new one soon, so I have to wait to even see if I can have the procedure covered.
I am trying to look forward to Spring and Summer.... to going to all the city pools and the beach with my boys, riding bikes, and eating ice cream.