I rarely discuss my kids here, because my older two generally guard their privacy to a degree I'll never comprehend, having been born without any semblance of a privacy gene. Sometimes I admire my kids for this, and other times I wish they'd open up. Earlier this year Jason, who turned 15 in June, was forced to turn his guts inside out, and let me tell you, the result was quite an explosion. He's actually asked me to write about his past year, and I've been putting it off for a month while I made certain he honestly wants me to do this. He does. He wants me to write it, and he doesn't want an opportunity to read it before I publish it. So Jason, I hope I can accomplish whatever is it you want from this post. I also hope you'll respond by giving me the great honor of guest posting on this blog. Also, Jason, I'm going to leave out Daddy, Allison, and Jonah in this post as much as possible.
Jason is a fascinating person on many levels. He's always been extremely verbal and mature. As a small child he was exceptionally serious, and would yell at us if we laughed at something funny he said or did. He was easily frustrated, and wouldn't try anything new until he was confident he already knew how to do it. One day I was keeping track of how many words he could say, getting close to that 100-word mark, and the next day he was speaking in full sentences using four-syllable words (his favorite was "appropriate" or in his case "apopiate"). Where Allison needed repeated reminders and often didn't listen to me anyway, Jason only needed me to speak softly to him once. He was so sensitive, anything more than that would result in Spongebob-style tears, which he'd present to us anyway about 8 times a day throughout his childhood. His first word was, "Noway!" I called him Eeyore.
On the other hand, at the age of 6 he got up on a stage for the first time to perform a monologue. I held my breath, figuring he'd probably memorized it nicely and would do an adequate job, as most of the other children had done. Instead, Jason became a different person, acting out the monologue with expression and body language and his innate humor that normally caused me to surpress laughter. Wild applause, and he liked it! He still has this alterego that enjoys being on a stage. Maybe that's how he can allow me to write this. Maybe that's how we ended up in this situation in the first place. I have an artistic, dramatic Eeyore going through puberty with uncertainty about the existence of his mother's future.
Jason's tumultuous teen years actually began when he was 12 and had his great growth spurt. He grew his hair long and wore it completely covering his eyes. To soothe himself, he took to constantly smoothing the hair down over his eyes and face. I barely saw the kid for 7 months, even though we spent time together everyday. I forced him to cut his hair short before his aunt's wedding and his own bar mitzvah, and he cried silently on the way home from Silver Scissors, grew the hair back at the first opportunity. He became enamored of studying the human psyche, and as you'd guess, didn't relate to middle school boys at all. He had a formspring page where some kids would tell him they were in love with him, and some kids would call him a fag. Somehow they discovered he liked a girl, and tried to figure out who it was. They know now, because Laura has been his girlfriend for nearly 14 months.
A couple times, Jason told me he'd tried to kill himself. I'd figured all along we'd experience something like that, and didn't take him seriously enough. How, as a parent, did I not take this seriously? This was before the cancer resurfaced, so what could've been more important? My great failure as a mother, and if something had happened to him it would've been my fault. I still know that if something happens to him it will be my fault.
Around the time my recurrence was announced, Jason started having panic attacks. I didn't know what to do or where to turn, and I was sick and didn't do enough to figure it out. This was the same time in my life that I was sure I was dying, failed to pay bills, forgot to register my car, etc. I spent as much time with Jason as I could, but he ended up feeling responsible for taking care of me. He came to me, in my room, and offered to get me ginger ale or diet soda. He introduced me to his favorite tv shows, and sometimes I stayed awake long enough to watch them. He came with me to my first grade classroom and helped me set it up. We experienced that earthquake together there. He has always been there for me, and I never made a single phone call to find out what to do about panic attacks that were becoming more frequent and forceful. You say I'm brave, and a hero, and this is why I tell you I am not. I never made ONE SINGLE PHONE CALL for my own son in pain because I was so wrapped up in myself.
So he started high school last September and found himself unequipped to succeed. He wasn't feeling well, he didn't understand algebra, and his science teacher was a miserable woman who shouldn't be teaching. Jason was depressed, and school was hard. He decided it didn't matter. He weakly attempted suicide again, and stopped doing his school work altogether. His Bs and Cs from the first marking period slipped quietly and effortlessly to Fs. He nearly passed out in health class when the teacher brought in cancerous organs. Testicular cancer landed him in the nurse's office and he came home. I did take him to the pediatrician that night and got him a couple scripts. He promptly took too many pills and landed in the principal's office, quite drugged. We got the dosage straight and then he took too many pills, hoping to relieve the pain for once and for all. That didn't work and finally, on January 17, he had a breakdown.
It was an ordinary night. We were watching tv in my room when Jonah came in to take a shower. He, being Jonah, put on a naked dance show for us before retreating into the bathroom (he, like me, does not value privacy). I laughed, and then I saw Jason was crying. Then screaming, and trying to pull out his hair. Ken and I could not calm him at all, and so I called Civia, who is the most soothing person I know. She got him to say a couple words, but I couldn't understand. Ken took him to the hospital crisis center and I waited up all night, just as they waited up all night. Jason was admitted, and spent a week there. Ken and I were allowed to visit from 6-7 pm each night, that was it. Jason needed the hospital, and the snack closet, and the kids, and the staff, and this one troubled girl who had no visitors, ever. The whole thing was a break from his normal life, and something about the therapy made him understand his anger. When we went to visit we represented his normal life and his anger, and he yelled at us the entire week. He'd never blamed us or yelled at us. It was progress. They got his meds straight, and after a week they sent him home with a plan.
Following the plan, I took him to a 3-hour group therapy session at the hospital the night after his discharge. He lasted 10 minutes there before calling me to come get him. The other kids were bad, bad juvies there by court order, and Jason was terrified. He would never speak in front of them. I talked to the coordinator, who pointed out that any group anywhere might be the same. So I switched Jason straight to individual therapy. Thank goodness, his first therapist has been the only one we've needed. She's perfect for Jason, soft-spoken, soothing, firm when necessary. Jason is always eager to see her. Sometimes I go in and we all talk together, and I appreciate their dynamic.
Jason's meds help. He has not had a panic attack in a long time. He does not feel suicidal. And yet he does still experience the anger. He flies off the handle without any warning, and he can be brutal. I try not to take it personally, but the truth is, I'm trying and trying. I'm trying to make up for it all. I'm not perfect, but I'm trying.
On April 7, I was cooking for the Passover seder that night, and Ken was dictating the cleaning orders to the kids. It's always stressful on those occasions. I left the kitchen for a few minutes, and when I returned I found Allison with ice on her jaw, and no Jason. He'd punched his sister and then run for it. I was babysitting the stove, the matzo balls were simmering, so I asked Ken to get out and find Jason. Ken said it was a bad idea, as angry as they both were. I forced him to go.
Within moments, Ken returned alone, and recounted the story that was later corroborated completely by Jason: Ken had found Jason, barefoot, on the road near our house. Ken pulled over his car and told Jason to get in. Jason ran, so Ken parked and caught up with him. They yelled at each other for a couple minutes as Jason backed up, finally backing into a pole and hitting his head. It hurt, and as furious as Jason already was, he spit in Ken's face. Ken responded by hitting Jason. A woman passing in her minivan saw the whole thing and pulled over, screaming that she was calling the police. Jason took advantage of the second's worth of confusion and fled. Ken knew it was over and returned home.
I don't remember what happened with the matzo balls, but I threw on shoes and left to find Jason myself. Instead, I found the cop and the woman talking. I pulled over and said they were talking about my son and I'd like to be involved. The cop asked me to wait in my car, which I thought was foolish when Jason was running off barefoot, but whatever. The cop followed me home before he would talk to me, but at least he sent a few cars out searching for Jason.
Nobody could find Jason. They knocked on Laura's door, and a few friends' doors, and couldn't find him. For 45 minutes I sat in my living room with Ken and this cop, then another cop and another, while my mom and sisters arrived with their side dishes for dinner. Finally, a car pulled up with Jason in the back. We all converged in the driveway. The officer who'd brought Jason home from 3 miles away and across the highway said he needed to be transported to the hospital by ambulance immediately. The officer who'd been with us since the beginning thought this was unnecessary and negotiations began. In the end, we were able to have dinner together and then Jill and I took Jason to the hospital, where he was not admitted. Guess if that was a fun dinner.
Why does Jason want all of this told? I'm a little uncomfortable typing it. Anyway, that was the last major incident, knock wood. We've spent the past few months trying to do some damage control. Jason did pass Photography and Latin at the end of the school year. He's currently at summer school taking English and Science. In the fall he'll take Algebra and Geometry concurrently, and I'm already trying to get a tutoring plan in place. With the assistance of the guidance counselors, he'll also have a special study hall, with just a couple other students and a teacher facilitator who will help Jason continue to work and stay organized.
Jason is doing fine in summer school. He already has a great relationship with the English teacher, who noted almost immediately that Jason doesn't belong there. Jason was showing off, quoting Walt Whitman and knowledgeably discussing Finnegan's Wake on the first day. He says he learns better in this alternative environment, but it seems to me he already knows the material. We'll see what happens in the fall. Hopefully he'll have enough supports in place that he'll be able to get through and eventually achieve educational independence again.
Jason's hair is bright blue. He bleached and dyed it himself. As always, he is a non-conformist. When he was little I predicted he would be a goth teen, but he's not. That would be too much like conforming to something, maybe. He does wear black jeans all summer, though. Wouldn't it have been a shame to lose this person from the planet. This quirky, thoughtful, thought-provoking, funny boy. Jason, I hope you know how much I love you. I just. I love you.
Wednesday, July 18, 2012
Thursday, July 12, 2012
People ARE nicer
Just yesterday a friend told me she's been diagnosed with a recurrence. She won't have to lose her hair, she said, and the chemo will be easy. I hope so, because this is a very active woman! Interestingly, she somewhat regrets that she won't go bald this go-around. "Everyone was so nice to me when I was bald," she said. I'd honestly been thinking the same thing the past few weeks.
The last time I was bald, I was pulled over by a state trooper for running a light at a major intersection. The trooper approached my car and spoke to me very gently, asked for license and registration as he pointed out my misdeed. I muttered that I was running late for an appointment (headed for radiation), and then realized that uncharacteristically, all of my documentation was left at home. I had been in the process of renewing my registration when I'd left. I had my license, that was all. I also had a crack along the whole width of my windshield. I told him honestly what had happened, and he wished me a nice day, asked me to please drive more carefully.
Another time, with some sort of scarf on my head, a stranger approached me in the Target parking lot and asked if he could pray for me. He took my face in his hands and prayed to Jesus that I would become healthy. It was comforting and promising, and a bit weird.
Last week I was dressed up for an appointment, and had Jason take a few silly pictures of me before I put on my wig. I got something like 33 comments on Facebook about how beautiful I am! We're all beautiful, in my opinion, but I got told 33 times! How cool is that!
Last night I went to a band parents' meeting, where I knew just about everyone. Mostly everyone has seen me often in the past year, but I guess because I was wearing my pretty scarf, several people asked how I am feeling.
The answer: I'm feeling great! Perfectly well. I look like a patient, but I don't think I look like I need pity. I'm running all over in my favorite summer clothes, socializing, relaxing, traveling (went to Arizona to see Renee, and tonight I'm driving to North Carolina to get Allison). Although I've been on chemo for 13 months tomorrow, it's only been obvious for the past few weeks. It's kind of nice to know that when I need to take a seat, nobody will glare at me for not giving up the seat for a child or something. I remember that afternoon at Macy's in May, when I felt so sick I nearly fainted, but was completely ignored by the sales associates right near me. I bet that wouldn't happen now. As an obvious cancer patient, they'd be by my side, bringing me the water I'd desperately needed. As some strange healthy-looking woman with her head in her lap, I was looked upon with scorn.
People are nicer when they know. Baldness is my label. It somehow makes me wish we could all have some sort of label when we're going through a rough time. I wouldn't get so annoyed with that lady whose cart is blocking the entire aisle if I know she is thinking about her mother's very recent funeral. I would be kinder if I knew the guy choosing vegetables to my left was just laid off from his job of 13 years and was delaying his return home. Most of all, I wish children with autism could be readily identified, because I cannot stand to see the hatred directed toward those mommies who try extra hard every single day. It's not realistic to expect all people to treat all others with kindness all the time. We humans can be quite annoying. But the label thing, it could help. For now I'll appreciate my label. And yet, I think I'd rather have hair and the scorn of Macy's employees.
The last time I was bald, I was pulled over by a state trooper for running a light at a major intersection. The trooper approached my car and spoke to me very gently, asked for license and registration as he pointed out my misdeed. I muttered that I was running late for an appointment (headed for radiation), and then realized that uncharacteristically, all of my documentation was left at home. I had been in the process of renewing my registration when I'd left. I had my license, that was all. I also had a crack along the whole width of my windshield. I told him honestly what had happened, and he wished me a nice day, asked me to please drive more carefully.
Another time, with some sort of scarf on my head, a stranger approached me in the Target parking lot and asked if he could pray for me. He took my face in his hands and prayed to Jesus that I would become healthy. It was comforting and promising, and a bit weird.
Last week I was dressed up for an appointment, and had Jason take a few silly pictures of me before I put on my wig. I got something like 33 comments on Facebook about how beautiful I am! We're all beautiful, in my opinion, but I got told 33 times! How cool is that!
Last night I went to a band parents' meeting, where I knew just about everyone. Mostly everyone has seen me often in the past year, but I guess because I was wearing my pretty scarf, several people asked how I am feeling.
The answer: I'm feeling great! Perfectly well. I look like a patient, but I don't think I look like I need pity. I'm running all over in my favorite summer clothes, socializing, relaxing, traveling (went to Arizona to see Renee, and tonight I'm driving to North Carolina to get Allison). Although I've been on chemo for 13 months tomorrow, it's only been obvious for the past few weeks. It's kind of nice to know that when I need to take a seat, nobody will glare at me for not giving up the seat for a child or something. I remember that afternoon at Macy's in May, when I felt so sick I nearly fainted, but was completely ignored by the sales associates right near me. I bet that wouldn't happen now. As an obvious cancer patient, they'd be by my side, bringing me the water I'd desperately needed. As some strange healthy-looking woman with her head in her lap, I was looked upon with scorn.
People are nicer when they know. Baldness is my label. It somehow makes me wish we could all have some sort of label when we're going through a rough time. I wouldn't get so annoyed with that lady whose cart is blocking the entire aisle if I know she is thinking about her mother's very recent funeral. I would be kinder if I knew the guy choosing vegetables to my left was just laid off from his job of 13 years and was delaying his return home. Most of all, I wish children with autism could be readily identified, because I cannot stand to see the hatred directed toward those mommies who try extra hard every single day. It's not realistic to expect all people to treat all others with kindness all the time. We humans can be quite annoying. But the label thing, it could help. For now I'll appreciate my label. And yet, I think I'd rather have hair and the scorn of Macy's employees.
Sunday, June 3, 2012
Hanging On
I haven't written in awhile. This is the busy time of year for me and my cohorts in parenting. School concerts, playoff baseball games, year-end school activities, class trips, Phillies games, parties, swimming, and in my case chemo on Tuesday afternoons. I've already had three treatments, and I get this week off. I have a printout on Abraxane that I was given during my first treatment (treatments are mercifully short, just an hour or so), and thus far my side effects have been following the guide faithfully. Fatigue, check (but not bad, just one day out); nausea, again, not bad; neuropathy, continuing where it left off following Xeloda. Hair loss: dramatic.
I was fine, with every hair in place, until I showered Thursday morning and noticed the drain was pretty full by the end. By yesterday morning I could pull out a clump without feeling it. Last night I could practically feel the follicles parting from my scalp, and had trouble sleeping. This morning was the worst of it, though. I lost about 50% of my hair just during this morning's shower. It was massive, frightening, unreal. I have thick, dark hair. As I conditioned, I worried I would emerge completely bald. Why, oh why couldn't it have lasted just two more weeks? School ends on June 15, and everything is going so well for me there. I sub just about everyday at the middle school, and I enjoy it immensely. I love the kids and the environment and the friends I've made. Some people know about the cancer, many don't. I have support and anonymity simultaneously. Until now, that is. Two days after my last entry, I decided to get my hair cut short so the loss would be less dramatic (heh, that went well). My wig is currently at least three inches longer than my hair. If I wear my wig to school, it will be quite ridiculous to expect anyone to believe my hair grew 3 inches in a weekend. If I wear a scarf on my head, I fear it will make me look like a sick person to the kids. At this point I still have just enough hair to appear normal in public, but I certainly can't avoid the shower. What will I face in the mirror on Monday morning? No matter what I choose to do in this situation, I think people at the middle school will see me differently, and that's not good. I just got unsolicited positive feedback from the principal on Friday.
On the big plus side, I haven't taken a single Advil in two weeks. Just after starting the Abraxane, the nerve pain down my legs became especially intense, and Advil stopped working. Dr. Fox prescribed a five-day Prednisone pack, which provided immediate relief. I feared the pain would return immediately after finishing the pills, but it's been barely noticeable, just a twinge now and then. Loreli insists it's a good sign that the chemo is doing its job, but I won't be too optimistic until I see the tumor markers drop. I'll have blood tests during my next appointment, on June 11. I do think the lump is shrinking, though.
How ironic. Just when I'm feeling better, I'll look sick.
I was fine, with every hair in place, until I showered Thursday morning and noticed the drain was pretty full by the end. By yesterday morning I could pull out a clump without feeling it. Last night I could practically feel the follicles parting from my scalp, and had trouble sleeping. This morning was the worst of it, though. I lost about 50% of my hair just during this morning's shower. It was massive, frightening, unreal. I have thick, dark hair. As I conditioned, I worried I would emerge completely bald. Why, oh why couldn't it have lasted just two more weeks? School ends on June 15, and everything is going so well for me there. I sub just about everyday at the middle school, and I enjoy it immensely. I love the kids and the environment and the friends I've made. Some people know about the cancer, many don't. I have support and anonymity simultaneously. Until now, that is. Two days after my last entry, I decided to get my hair cut short so the loss would be less dramatic (heh, that went well). My wig is currently at least three inches longer than my hair. If I wear my wig to school, it will be quite ridiculous to expect anyone to believe my hair grew 3 inches in a weekend. If I wear a scarf on my head, I fear it will make me look like a sick person to the kids. At this point I still have just enough hair to appear normal in public, but I certainly can't avoid the shower. What will I face in the mirror on Monday morning? No matter what I choose to do in this situation, I think people at the middle school will see me differently, and that's not good. I just got unsolicited positive feedback from the principal on Friday.
On the big plus side, I haven't taken a single Advil in two weeks. Just after starting the Abraxane, the nerve pain down my legs became especially intense, and Advil stopped working. Dr. Fox prescribed a five-day Prednisone pack, which provided immediate relief. I feared the pain would return immediately after finishing the pills, but it's been barely noticeable, just a twinge now and then. Loreli insists it's a good sign that the chemo is doing its job, but I won't be too optimistic until I see the tumor markers drop. I'll have blood tests during my next appointment, on June 11. I do think the lump is shrinking, though.
How ironic. Just when I'm feeling better, I'll look sick.
Friday, May 11, 2012
Hair today, gone tomorrow
I wept quietly in Dr. Fox's office when he suggested I would have to switch to an infusion chemo. The new chemo, Abraxane, won't make me feel sick, and it's an easy, short infusion ... but patients on it lose their hair. I wept for my hair. I went home, and I focused on my hair. And then I made peace with losing my hair, but in actuality I felt it wouldn't happen. My tumor markers rising had been a fluke, and this month's tests would show a drastic decrease, especially after denying myself sugar for weeks. Still, I told myself and others, hair's hair, it's not that big a deal.
What I failed to realize until Loreli called during 9th period cycle math is that tumor markers going up IS a big deal. I'm not going toward remission, I'm traveling the wrong direction. I couldn't even make it off the phone before the tears attacked my cheeks, and the kids fell silent, whispering, "Is she crying?" I realized I couldn't stay, and 20 minutes later here I am, still crying. No, I really don't want to lose my hair, but what I don't want to lose more is my optimism. All this time I've been going along, physically improving as I go, sure in some recess of my mind that I could beat the odds and live for 20 years or so. That I could see a grandkid or two, watch my kids begin their careers. And now here's my mortality back to bite me in the ass. I have to start all over again, face it all over again. I'm really not that strong, I'm just generally in denial.
I don't even know where the cancer is right now. Is it back in my liver? How? Why? Is it just in that little lump I found near my arm pit? Is it back in my bones? Is all the pain in my legs because of the cancer? Fox might set up a biopsy on Tuesday for the lump, but I don't know about the rest of it. I have no idea what my body is doing. How could I be so out of touch?
So I guess I'll make an appointment to have my wig washed and styled, even though this isn't like a Day 19 Taxotere/Cytoxen hair loss, it's much more gradual. And I'll finally look like the patient I've been pretending not to be for the past 5 months.
What I failed to realize until Loreli called during 9th period cycle math is that tumor markers going up IS a big deal. I'm not going toward remission, I'm traveling the wrong direction. I couldn't even make it off the phone before the tears attacked my cheeks, and the kids fell silent, whispering, "Is she crying?" I realized I couldn't stay, and 20 minutes later here I am, still crying. No, I really don't want to lose my hair, but what I don't want to lose more is my optimism. All this time I've been going along, physically improving as I go, sure in some recess of my mind that I could beat the odds and live for 20 years or so. That I could see a grandkid or two, watch my kids begin their careers. And now here's my mortality back to bite me in the ass. I have to start all over again, face it all over again. I'm really not that strong, I'm just generally in denial.
I don't even know where the cancer is right now. Is it back in my liver? How? Why? Is it just in that little lump I found near my arm pit? Is it back in my bones? Is all the pain in my legs because of the cancer? Fox might set up a biopsy on Tuesday for the lump, but I don't know about the rest of it. I have no idea what my body is doing. How could I be so out of touch?
So I guess I'll make an appointment to have my wig washed and styled, even though this isn't like a Day 19 Taxotere/Cytoxen hair loss, it's much more gradual. And I'll finally look like the patient I've been pretending not to be for the past 5 months.
Sunday, April 29, 2012
Alive on MBC
To me, the word survivor indicates that some traumatic event occurred, and someone lived to tell about it. The event is concluded, and someone survived. A plane crash, a tornado, a plunging elevator, a sinking ship, a horrible relationship. With a miracle, or inner strength, or just plain luck, people survive such catastrophes. So, are we walking wounded with metastatic breast cancer, or perhaps any cancer, actually survivors? Did we come out on the other side of something? As a staunch realist, I continually need to bite my tongue when I'm called a survivor. I'm a soldier, maybe. Still in battle. My chemo message board group calls itself the warrior princesses. I'm a warrior. I wouldn't make a great princess. This weekend I heard words tossed around like conqueror and metavivor (wtf?). I can't even conquer nausea when it strikes, so that term seems inapplicable, and metavivor is beyond contrived. I am not a survivor. Gloria Gaynor: survivor. Me: struggler. More upbeat, you say? Okay, then, I'll accept warrior, as long as I don't have to apply extra makeup and lots of pink stuff.
This weekend was purple, like the theme color of the organization called Living Beyond Breast Cancer, which, fortuitously, is based over the bridge in Haverford. LBBC holds a conference each year for people with metastatic breast cancer and their caregivers. Ken had to take Jonah to baseball, so I took Jill. Which turned out to make more sense, anyway, because it wasn't the most he-man environment. I was excited but nervous about attending. I've learned that anything associated with MBC will be either depressing or uplifting. Depressing can knock me off my feet for a few days. Uplifting strengthens me until I feel like I have some resolve, even some control. Therefore, I breathed a huge sigh of relief immediately upon arrival at the conference yesterday morning. Women in purple, yellow, or blue plastic leis milled around the lobby, grabbing coffee and scrambled eggs before heading to tables inside. I was given a purple lei because I am a survi -- warrior. Jill got a yellow one.
I'd never seen so many MBC victims at all, and here we were gathered, talking, laughing, sharing our diagnoses. Where are your mets? When were you diagnosed? Nobody looked sick -- no wheelchairs, breathing tubes, etc. -- but we all seemed to be taking lots of pills. Many bald women, of course, some with head coverings, some without (today, the bald women were much braver about showing off their shiny craniums -- crania?). We were from all over America, come together to learn, share, and empower ourselves.
After gathering our plethora of swag and finishing our breakfasts, the first panel began. The discussion regarded perspectives on breast cancer, but it was mainly about meds. However, the great paradigm shift that was discussed at length pertained to the changing consideration of MBC as a chronic disease rather than a terminal disease. Four oncologists said we are "almost there," to the point of considering MBC patients the same as specialists treat diabetes or heart disease patients: as patients who can live a long, stable life with continuing care. As you would expect, we were fortified by this information.
After the panel discussion and lunch, I went off to the nutrition seminar. The woman leading it holds a master's degree in nutrition and is the nutrition specialist at the local Cancer Centers of America. She knew her stuff, and shared willingly. I was the first to ask a question at the end of her presentation. I asked about sugar feeding cancer, because I hear it so often. In fact, I've been mostly sugar free for the last few weeks, leading to quite an adrenaline burst. The nutritionist, however, said it has to do with insulin levels, and there has been no scientific evidence to prove that sugar in moderation will cause the cancer cells to expand. Today a doctor suggested that we could "eat a piece of cake, not a whole cake" and be fine.
One problem that was widely expressed during the course of the weekend was fatigue. Thank goodness. We're all tired, and it is serious. And right now, the only decent prescription is exercise. I suppose the doctors are taking it seriously, then, but not big pharma. Oh well. Pain, on the other hand, has multiple fixes. I'm in pain most of the time these days, thanks to Xeloda and Exgeva (the monthly shot I get to protect my bones), and I've just been taking Advil. However, I've taken so much in the past few weeks, I now realize it's time for me to discuss pain management with Dr. Fox. I had thought he would simply prescribe one of the general, sleep-inducing oxysomething pills, but apparently pain relief doesn't have to equate to further exhaustion or added dopiness (I, for one, am quite dopy enough).
Today I attended a seminar on liver and lung mets. I left with about 15 questions to ask Dr. Fox at my next appointment. He might end up sorry he gave Jill his parking spot yesterday morning (long story)! The information wasn't right for this blog, but if anyone reading this wants to ask me questions, message me or email me or call me or whatever. The last discussion of the conference regarded complementary treatments, and that was pretty much what you'd expect: accupuncture, exercise, meditation, pot, yoga. Speaking of yoga, LBBC will be holding Yoga on the Steps on May 20 at the art museum. Anyone want to come along with me? You just have to raise and/or donate at least $60. It sounds like it will be incredible.
Can you tell how impressed I am with LBBC? I should also mention that I attended the conference for free by attaining a fee waiver from the LBBC web site, and that Komen provided travel grants for many attendees. Finally, I'm thrilled to have met some new and lovely friends this weekend, and as ever, I'm filled with appreciation for my existing friends and family. Love you!
This weekend was purple, like the theme color of the organization called Living Beyond Breast Cancer, which, fortuitously, is based over the bridge in Haverford. LBBC holds a conference each year for people with metastatic breast cancer and their caregivers. Ken had to take Jonah to baseball, so I took Jill. Which turned out to make more sense, anyway, because it wasn't the most he-man environment. I was excited but nervous about attending. I've learned that anything associated with MBC will be either depressing or uplifting. Depressing can knock me off my feet for a few days. Uplifting strengthens me until I feel like I have some resolve, even some control. Therefore, I breathed a huge sigh of relief immediately upon arrival at the conference yesterday morning. Women in purple, yellow, or blue plastic leis milled around the lobby, grabbing coffee and scrambled eggs before heading to tables inside. I was given a purple lei because I am a survi -- warrior. Jill got a yellow one.
I'd never seen so many MBC victims at all, and here we were gathered, talking, laughing, sharing our diagnoses. Where are your mets? When were you diagnosed? Nobody looked sick -- no wheelchairs, breathing tubes, etc. -- but we all seemed to be taking lots of pills. Many bald women, of course, some with head coverings, some without (today, the bald women were much braver about showing off their shiny craniums -- crania?). We were from all over America, come together to learn, share, and empower ourselves.
After gathering our plethora of swag and finishing our breakfasts, the first panel began. The discussion regarded perspectives on breast cancer, but it was mainly about meds. However, the great paradigm shift that was discussed at length pertained to the changing consideration of MBC as a chronic disease rather than a terminal disease. Four oncologists said we are "almost there," to the point of considering MBC patients the same as specialists treat diabetes or heart disease patients: as patients who can live a long, stable life with continuing care. As you would expect, we were fortified by this information.
After the panel discussion and lunch, I went off to the nutrition seminar. The woman leading it holds a master's degree in nutrition and is the nutrition specialist at the local Cancer Centers of America. She knew her stuff, and shared willingly. I was the first to ask a question at the end of her presentation. I asked about sugar feeding cancer, because I hear it so often. In fact, I've been mostly sugar free for the last few weeks, leading to quite an adrenaline burst. The nutritionist, however, said it has to do with insulin levels, and there has been no scientific evidence to prove that sugar in moderation will cause the cancer cells to expand. Today a doctor suggested that we could "eat a piece of cake, not a whole cake" and be fine.
One problem that was widely expressed during the course of the weekend was fatigue. Thank goodness. We're all tired, and it is serious. And right now, the only decent prescription is exercise. I suppose the doctors are taking it seriously, then, but not big pharma. Oh well. Pain, on the other hand, has multiple fixes. I'm in pain most of the time these days, thanks to Xeloda and Exgeva (the monthly shot I get to protect my bones), and I've just been taking Advil. However, I've taken so much in the past few weeks, I now realize it's time for me to discuss pain management with Dr. Fox. I had thought he would simply prescribe one of the general, sleep-inducing oxysomething pills, but apparently pain relief doesn't have to equate to further exhaustion or added dopiness (I, for one, am quite dopy enough).
Today I attended a seminar on liver and lung mets. I left with about 15 questions to ask Dr. Fox at my next appointment. He might end up sorry he gave Jill his parking spot yesterday morning (long story)! The information wasn't right for this blog, but if anyone reading this wants to ask me questions, message me or email me or call me or whatever. The last discussion of the conference regarded complementary treatments, and that was pretty much what you'd expect: accupuncture, exercise, meditation, pot, yoga. Speaking of yoga, LBBC will be holding Yoga on the Steps on May 20 at the art museum. Anyone want to come along with me? You just have to raise and/or donate at least $60. It sounds like it will be incredible.
Can you tell how impressed I am with LBBC? I should also mention that I attended the conference for free by attaining a fee waiver from the LBBC web site, and that Komen provided travel grants for many attendees. Finally, I'm thrilled to have met some new and lovely friends this weekend, and as ever, I'm filled with appreciation for my existing friends and family. Love you!
Saturday, April 14, 2012
Drive
Do I need to update about the tests from Wednesday? Most of you saw on facebook, right? Okay, then very quickly: I had a CT of my abdomen that looked exactly like the scan I had in January. Which is a good thing. I had MRIs of my brain and my pelvis. No news is good news on the pelvic scan. Fox didn't have those results yet when I saw him, but said he didn't expect to find anything amiss. The brain scan looked perfect, no brain cancer. Just some more of those healed bone pieces on my skull. Apparently I had cancer all over my bones? I'm not asking, he's not telling. My tumor marker was back up into the 80s, but that's only a slight increase that Dr. Fox said he won't take seriously unless there's another increase in 4 weeks. One slight increase could have more to do with the lab than with my health.
It's a gorgeous day, but here I sit. It took 3 advil to get any rest, which I finally got in the morning. The chemo is numbing my tongue today, which probably just means I'm not drinking enough water, but I'm also a bit nauseous. I want to go out for a walk. I want to write. I have mental drive to do go for the walk, but my body is not on board at the moment. So I write.
I need to eat better, but I don't want to do the research. I don't want to switch to all the foods that are better. I'm resistant to giving up sugar. Food worries cause me stress, and I'm not supposed to have stress. But of course, my entire existence is wracked with stress at the moment. Which worries me. I took a meditation CD from the chemo suites, and I even took off the plastic. But I haven't listened to it. I'm afraid I'm relying on everyone else to tell me what to do, and then I'm still not doing much of it. It reminds me of someone, which worries me. I'm feeling my eyes close as I write. I don't want to drift off to sleep. I want to take a shower and start my day at, at, at ... 3:43 pm. I have no idea what's wrong.
Allison and I took our first college tour yesterday (talk about exhausting). I figure she'll get into the school, no problem, but she mentioned that she's worried about her essay. She insisted there has never been anything in her life that's interesting enough to be a topic. I pointed out that her mother has metastatic breast cancer, and she said that has nothing to do with her. I noted that it limits what I can do with her, and that sometimes because of me she has to find her own way. And she looked at me and said, "You're here today, aren't you?" I guess it's enough for her that I can still take her places. I said if she's going to have to suffer with a mother with cancer, she might as well take advantage of it on her essays. At which point she rounded on me and announced, "It's not all about you all the time!"
It's not?
It's a gorgeous day, but here I sit. It took 3 advil to get any rest, which I finally got in the morning. The chemo is numbing my tongue today, which probably just means I'm not drinking enough water, but I'm also a bit nauseous. I want to go out for a walk. I want to write. I have mental drive to do go for the walk, but my body is not on board at the moment. So I write.
I need to eat better, but I don't want to do the research. I don't want to switch to all the foods that are better. I'm resistant to giving up sugar. Food worries cause me stress, and I'm not supposed to have stress. But of course, my entire existence is wracked with stress at the moment. Which worries me. I took a meditation CD from the chemo suites, and I even took off the plastic. But I haven't listened to it. I'm afraid I'm relying on everyone else to tell me what to do, and then I'm still not doing much of it. It reminds me of someone, which worries me. I'm feeling my eyes close as I write. I don't want to drift off to sleep. I want to take a shower and start my day at, at, at ... 3:43 pm. I have no idea what's wrong.
Allison and I took our first college tour yesterday (talk about exhausting). I figure she'll get into the school, no problem, but she mentioned that she's worried about her essay. She insisted there has never been anything in her life that's interesting enough to be a topic. I pointed out that her mother has metastatic breast cancer, and she said that has nothing to do with her. I noted that it limits what I can do with her, and that sometimes because of me she has to find her own way. And she looked at me and said, "You're here today, aren't you?" I guess it's enough for her that I can still take her places. I said if she's going to have to suffer with a mother with cancer, she might as well take advantage of it on her essays. At which point she rounded on me and announced, "It's not all about you all the time!"
It's not?
Friday, April 6, 2012
Bumps
The bumps on my head are back, so I have headaches most of the time. My emotions are all over the place. Yesterday I cried all day, and today I was downright nasty. Now I'm sick in bed, and I have to slice the brisket. I don't think I can handle being around food right now. I wonder if the brisket is getting ruined, sitting there waiting for me.
My legs hurt from my hips to my ankles. I had a dream that I was driving with my legs crossed at the ankles and they got stuck that way. The car was careening downhill and I could not get to the brake. It woke me up.
Kevin started chemo on Monday and he is so sick. He already had to go to Penn for fluids yesterday. Dayla found out her cancer has spread everywhere. It's in her bones, her brain, her lungs, and her liver. She's quite determined to fight. If you want to see strength, that's where to look.
I don't know what my story is. I told Dr. Fox my litany of symptoms yesterday (with Jill's help, because I had trouble remembering all of them), and naturally he's concerned, but he has no idea what they could mean. What he said to me is that his job is to discover if I have anything wrong that is connected to my breast cancer, so he's running CT scans on my brain (though he doesn't think I have cancer in my brain) and abdomen, and a pelvic MRI. I'll have all of this done Wednesday morning, and then I'll meet with him the same day to hear the results. He's already warned me: if it's more cancer, I have to go back on the Ixebippilone, that horrible infusion chemo I took last summer. I gaped at him and asked why that, and he said because he already knows it works on me as a primary attack form, and he'll pull me off it again when I stop tolerating it. I can't even tolerate the word Ixebippilone.
When you leave the exam room at the breast center there, you have to check out before you leave. It's just a matter of making follow-up appointments and so forth. They also make any other appointments you need, like for CT scans and such. The woman who helped me yesterday was working hard to get all of my appointments spaced just right on the same day when suddenly the word Ixebippilone went swirling in my brain and the world crashed. I started to cry, and couldn't stop. The woman immediately stopped to help me, and had Jill come over. A minute later a very kind nurse scooped me up in a big hug and led me into a chemo suite. That's the kind of sensitivity it takes to be an oncology staffer. I vented to her a little bit, and she thought the social worker could help me. I ended up talking, with Jill, to the social worker and a different nurse for nearly an hour. They're going to help me figure out my Penn bills, because I get a bunch of them and find them overwhelming. They also made me an almost immediate appointment with the staff counselor, who I met before when I was originally diagnosed. That appointment went well, so I'm going to continue to see him. He thinks he can help me stop feeling overwhelmed all the time. Oh, his name is Mark. Or Marc? I think it's Mark.
So that's me, mostly up to date. I should get back to the brisket, because the sooner it's sliced and soaking in the juices, the sooner I can get to sleep. Have happy religious holidays this weekend!
My legs hurt from my hips to my ankles. I had a dream that I was driving with my legs crossed at the ankles and they got stuck that way. The car was careening downhill and I could not get to the brake. It woke me up.
Kevin started chemo on Monday and he is so sick. He already had to go to Penn for fluids yesterday. Dayla found out her cancer has spread everywhere. It's in her bones, her brain, her lungs, and her liver. She's quite determined to fight. If you want to see strength, that's where to look.
I don't know what my story is. I told Dr. Fox my litany of symptoms yesterday (with Jill's help, because I had trouble remembering all of them), and naturally he's concerned, but he has no idea what they could mean. What he said to me is that his job is to discover if I have anything wrong that is connected to my breast cancer, so he's running CT scans on my brain (though he doesn't think I have cancer in my brain) and abdomen, and a pelvic MRI. I'll have all of this done Wednesday morning, and then I'll meet with him the same day to hear the results. He's already warned me: if it's more cancer, I have to go back on the Ixebippilone, that horrible infusion chemo I took last summer. I gaped at him and asked why that, and he said because he already knows it works on me as a primary attack form, and he'll pull me off it again when I stop tolerating it. I can't even tolerate the word Ixebippilone.
When you leave the exam room at the breast center there, you have to check out before you leave. It's just a matter of making follow-up appointments and so forth. They also make any other appointments you need, like for CT scans and such. The woman who helped me yesterday was working hard to get all of my appointments spaced just right on the same day when suddenly the word Ixebippilone went swirling in my brain and the world crashed. I started to cry, and couldn't stop. The woman immediately stopped to help me, and had Jill come over. A minute later a very kind nurse scooped me up in a big hug and led me into a chemo suite. That's the kind of sensitivity it takes to be an oncology staffer. I vented to her a little bit, and she thought the social worker could help me. I ended up talking, with Jill, to the social worker and a different nurse for nearly an hour. They're going to help me figure out my Penn bills, because I get a bunch of them and find them overwhelming. They also made me an almost immediate appointment with the staff counselor, who I met before when I was originally diagnosed. That appointment went well, so I'm going to continue to see him. He thinks he can help me stop feeling overwhelmed all the time. Oh, his name is Mark. Or Marc? I think it's Mark.
So that's me, mostly up to date. I should get back to the brisket, because the sooner it's sliced and soaking in the juices, the sooner I can get to sleep. Have happy religious holidays this weekend!
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