I'm just getting sick of talking about chemo! The women on my message board are starting to make up words like chemocentric and chemolicious, and I occasionally find myself doing the same thing. But of course, the point to the blog is that I can write down what I'm going through and not have to repeat the information. If I don't write it, I have to talk about it ... again and again and again. That's starting to happen.
So, treatment #3 side effects are almost past. My mouth is starting to heal, which means I can taste food just a bit now, and my tongue isn't instantly turning even ice cream to lava. I'm writing this from a subbing assignment, my third day this week at the same school (and I'm having such a blast!). My head, my stomach, etc. Everything is fine. On Monday night MJ and I went for a fast-paced walk for 45 minutes, and I felt good when I returned.
Last week was so crazy. I had a day on Thursday that's like the kind of day people post about on eBay just before they make $10,000 selling an old baseball or an ugly, unlucky wedding gown. Grass, mud, toys, a trip to the ER (for Civia's husband, he's okay), the rabbi showing up, a houseful of extra kids, a freezing cold bath for Jonah, PMS (not mine), all while I was too sick to emerge from the bedroom. Gotta laugh in retrospect, but hopefully there won't be any repeats of such insanity! That's like the woman on my board who was at her child's softball game and managed to get conked on the head with the ball. Of all people, the ball had to land on the cancer patient's head! She got her "second ambulance ride" for that one, and after all that we had to laugh. Because she's okay, of course, otherwise it wouldn't be funny, obviously.
Today's lesson is titled What I've Learned about Chemo, Which Isn't Much. The cocktail I'm taking is a mix of taxotere and cytoxan (TC). Taxotere is pretty new, it's only been around for a few years. The side effects are weird and unreliable, which is why I almost never know what to expect. The hair loss is about the only definite, and even with that, I still have about 15% of bitty hair covering. Many people with "early stage" breast cancer (and I am considered to be early stage, thank goodness) take this combination. However, severe allergic reactions seem to prevent about 20% of women from being able to take it. We who can tolerate get 4 to 6 doses of it, one every three weeks. That's because it takes three weeks for the chemo to leave the system. As soon as it's out, put in more.
The other commonly used chemo drug combo for breast cancer patients is adriamycin and cytoxan (AC). This is tougher to handle than taxotere, or at least more nauseating. It also can cause or magnify heart trouble. Some women need both adriamycin and taxotere before they finish their regimens, usually four AC and four TC. Before I met with Dr. Fox, Dr. Czerniecki led me to believe that's how it would go for me. Women who have the AC first tend to be slightly relieved when they get to the TC. So I'm lucky to just have to take TC!
There are other chemo meds for breast cancer, including a brand new one (Avastin) which is still in the trial stages, and then other kinds of chemo used for other cancers. I just found out about a clinical trial for a med that's supposed to have tremendous success in keeping cancer from recurring in the bones, so I plan to ask about that next time I see Dr. Fox. Otherwise, I go for chemo on Monday, May 11 (last treatment) and then so on and so on.
Finally, I have to mention last Sunday night. My first boss out of college was a magazine editor with a strong penchant for superlatives. An endlessly energetic 30-year-old guy. I've kept in touch with him all these years, and now he's a pretty energetic 51-year-old guy who's become a superlative nutritionist. When I told him about my diagnosis, he jumped right into gear. He sent me the most restrictive diet I could possibly imagine, and told me if I didn't follow it I would die. Because I was still pretty much a child when I started working for him, I spent the next few weeks whining at him, how could he make me do that. I tried to get out of the two-hour Whole Foods tour he insisted I take on Sunday night, but the beautiful weather was not an adequate excuse for him, and my kvetching did nothing to dissuade him. So I went, and learned a lot! I promised I would add his foods to my diet, and along the way we made some compromises, and it turned out well. It's definitely worth it to look into better nutrition after all this, even if you think you're eating well enough already. Of course, I might not read the paper he gave me on the dangers of sugar. There's no way I'm entirely giving up chocolate chip cookies!
Well, that's enough. Or at the very least, I'm out of prep and lunch time.
Thursday, April 30, 2009
Monday, April 27, 2009
The Big Question
I've been pondering this for so many weeks. It's what occurs to me on the nights I mistakenly predict I don't need an Ambien, and then pay the price at 3 am: What is the purpose of this journey?
What am I supposed to learn from this? If I don't learn it, will I be doomed to repeat the whole experience? There is a point. The "things happen for a reason" expression is like a scratched record -- err, what's the equivalent for this century -- in my mind. So I peek around corners, search deeply into the eyes of my friends and family, delve into my own mind, trying to pinpoint the one answer that will lead to lasting physical and metaphysical wellness. I guess I want to be Gandhi.
It's not working. Instead, what I'm learning is how some celebrities come to be so self-absorbed. Take someone who has always sought to be the center of attention and give them the opportunity, and what you get is someone who stands at a hostess desk at a crowded restaurant and wondrously bellows, "Don't you know who I am?" That's me. Well, obviously I'm not a celebrity, but this is the most attention I've ever gotten, and I like it. Next thing you know I'll be stomping my feet, with my bald head gleaming (it doesn't really gleam, I have some fuzzy hair), and I'll blare to some poor, unsuspecting anybody, "Don't you see what I HAVE?" Selfishness cannot possibly be the ideal!
Today at McDonalds (a treat for Jonah) I initially ordered a happy meal, before realizing the toy is no longer from Monsters Versus Aliens. At that point I said, "We don't need the happy meal, just the food." So she rang it all up separately and charged us more than she would have if we'd gotten the toy. I was annoyed it didn't occur to her that I might not want to pay MORE to get the food without the toy. Once I thought about it, it became clear that I should be annoyed at myself for being so intolerant. Here is a person, gainfully employed, maybe doing the best she can, at a fast food restaurant, and I expect possibly so much more than she can do. Why? All I proved is that I do not deserve a special education certificate in this frame of mind.
On Friday, a perfect 75-degree day when I felt chemo awful, Ken took me for a drive through the pretty rural areas. Last fall I subbed in one of the rural towns, and I never enjoyed the 15-mile drive through lush farmland. Instead, I drove just as rudely as usual, hoping to pass anyone, thinking the key to happiness would be to have the 50-mph roads to myself, so I could fly at 65. With Ken, though, I slipped into the mindset of the other drivers. Why rush? The cows aren't going anywhere. It was shocking at first, and I had to fight to let go of my backseat driving instincts, but once I relaxed it was mildly exhilarating just to ride along in the car. When we got home, I didn't feel nearly as awful. Although maybe that also had something to do with the Pringles.
So far I'm a horrible cancer student. I'm selfish, intolerant, and obnoxious. I need to re-read my study guide. Even though I'm not getting any of the answers right, I know they're smack dab in front of me. I'm getting to be more convinced they're in the eyes of my family and friends. I'm not meant to absorb the attention, I'm meant to see what it is you're actually giving and learn to do it as well. And then there's got to be lots of other stuff to learn. I hope I get to that part of the course before I stomp my feet in a restaurant.
What am I supposed to learn from this? If I don't learn it, will I be doomed to repeat the whole experience? There is a point. The "things happen for a reason" expression is like a scratched record -- err, what's the equivalent for this century -- in my mind. So I peek around corners, search deeply into the eyes of my friends and family, delve into my own mind, trying to pinpoint the one answer that will lead to lasting physical and metaphysical wellness. I guess I want to be Gandhi.
It's not working. Instead, what I'm learning is how some celebrities come to be so self-absorbed. Take someone who has always sought to be the center of attention and give them the opportunity, and what you get is someone who stands at a hostess desk at a crowded restaurant and wondrously bellows, "Don't you know who I am?" That's me. Well, obviously I'm not a celebrity, but this is the most attention I've ever gotten, and I like it. Next thing you know I'll be stomping my feet, with my bald head gleaming (it doesn't really gleam, I have some fuzzy hair), and I'll blare to some poor, unsuspecting anybody, "Don't you see what I HAVE?" Selfishness cannot possibly be the ideal!
Today at McDonalds (a treat for Jonah) I initially ordered a happy meal, before realizing the toy is no longer from Monsters Versus Aliens. At that point I said, "We don't need the happy meal, just the food." So she rang it all up separately and charged us more than she would have if we'd gotten the toy. I was annoyed it didn't occur to her that I might not want to pay MORE to get the food without the toy. Once I thought about it, it became clear that I should be annoyed at myself for being so intolerant. Here is a person, gainfully employed, maybe doing the best she can, at a fast food restaurant, and I expect possibly so much more than she can do. Why? All I proved is that I do not deserve a special education certificate in this frame of mind.
On Friday, a perfect 75-degree day when I felt chemo awful, Ken took me for a drive through the pretty rural areas. Last fall I subbed in one of the rural towns, and I never enjoyed the 15-mile drive through lush farmland. Instead, I drove just as rudely as usual, hoping to pass anyone, thinking the key to happiness would be to have the 50-mph roads to myself, so I could fly at 65. With Ken, though, I slipped into the mindset of the other drivers. Why rush? The cows aren't going anywhere. It was shocking at first, and I had to fight to let go of my backseat driving instincts, but once I relaxed it was mildly exhilarating just to ride along in the car. When we got home, I didn't feel nearly as awful. Although maybe that also had something to do with the Pringles.
So far I'm a horrible cancer student. I'm selfish, intolerant, and obnoxious. I need to re-read my study guide. Even though I'm not getting any of the answers right, I know they're smack dab in front of me. I'm getting to be more convinced they're in the eyes of my family and friends. I'm not meant to absorb the attention, I'm meant to see what it is you're actually giving and learn to do it as well. And then there's got to be lots of other stuff to learn. I hope I get to that part of the course before I stomp my feet in a restaurant.
Thursday, April 23, 2009
Not Sure How I Feel
I'm lying in bed, trying to decide. Last night I mucked it up, went out to dinner (a school fundraiser, no less) with the boys and got publicly ill. I hope I didn't scare anyone's kids. Mine are unfortunately used to seeing me slouched over like that.
So today I haven't gotten out of bed. I am supposed to move every so often, but it's been nice and cozy to spend 90% of the time sound asleep! I could, like, take a shower, something like that, maybe even go to my book club meeting. I missed Jonah's baseball practice, he's there now. I actually think I want to eat, but I have no idea what. Chocolate? I'm also now realizing, I guess because of the sound of girl voices in the front, that I haven't laid eyes on Allison today. Here she is. Running in and out with Simona. Oy.
I wonder what other people think: Does Jason deserve a bit of extra kindness at school because of what he puts up with at home? He doesn't get treated well at his school, in my opinion. His math teacher is nasty to him and refuses to speak to me about it. Jason had one stupid incident with a potato more than a month ago, for which he should not have gotten into any trouble, and for that his entire last quarter at this school is now ruined. Even though he made the honor roll and has been a really good kid. And you know how I champion him at home. He earns it. He is a good boy, and he honestly does have so much on his plate. You'd think they could possibly give a little, once in awhile. Allison's and Jonah's teachers have been absolutely fantastic. Their kindness has brought me to tears. Doesn't Jason deserve the same? This is just really eating at me. The principal can't even keep track of which kid Jason is, it's all so meaningless to him. Very sad.
Huh. Another thought. Is this chemo brain? I've been so afraid of losing mental strength through all this. I can feel that I'm rambly now, and not making much sense. And earlier today I thought the book was called Flowers for Alcatraz, even though that didn't sound quite right. Allison, it turns out, is right here in the house, she's in the kitchen with Simona. What if I end up with brain damage? I think that's the one thing I could not handle. I'll try a shower. And maybe some chocolate.
So today I haven't gotten out of bed. I am supposed to move every so often, but it's been nice and cozy to spend 90% of the time sound asleep! I could, like, take a shower, something like that, maybe even go to my book club meeting. I missed Jonah's baseball practice, he's there now. I actually think I want to eat, but I have no idea what. Chocolate? I'm also now realizing, I guess because of the sound of girl voices in the front, that I haven't laid eyes on Allison today. Here she is. Running in and out with Simona. Oy.
I wonder what other people think: Does Jason deserve a bit of extra kindness at school because of what he puts up with at home? He doesn't get treated well at his school, in my opinion. His math teacher is nasty to him and refuses to speak to me about it. Jason had one stupid incident with a potato more than a month ago, for which he should not have gotten into any trouble, and for that his entire last quarter at this school is now ruined. Even though he made the honor roll and has been a really good kid. And you know how I champion him at home. He earns it. He is a good boy, and he honestly does have so much on his plate. You'd think they could possibly give a little, once in awhile. Allison's and Jonah's teachers have been absolutely fantastic. Their kindness has brought me to tears. Doesn't Jason deserve the same? This is just really eating at me. The principal can't even keep track of which kid Jason is, it's all so meaningless to him. Very sad.
Huh. Another thought. Is this chemo brain? I've been so afraid of losing mental strength through all this. I can feel that I'm rambly now, and not making much sense. And earlier today I thought the book was called Flowers for Alcatraz, even though that didn't sound quite right. Allison, it turns out, is right here in the house, she's in the kitchen with Simona. What if I end up with brain damage? I think that's the one thing I could not handle. I'll try a shower. And maybe some chocolate.
Monday, April 20, 2009
Treatment Day
This time my appointment was for the morning. Much more crowded there in the morning. Civia and I were in the office for more than two hours before the drip even got started! Well, to be fair, I extended my appointment with Sara with my many questions. I'm okay with the answers. First, not much to be done about the itch. Second, I may not ever have another menstrual cycle, but I may have it suddenly return in two or three years. No sign of it now, and I am having hot flashes ... who knows. Third, I found out that I can start radiation three weeks after I finish chemo ... which brings us to the beginning of June. I'll have it six days a week for six weeks. Perfect! My half season membership begins exactly when radiation ends. I will be allowed in the sun with a really good sunscreen. It won't kill me that my neck got a little burnt at the farm on Saturday. My genetic testing (for the BRAC genes) will be the day of my next chemo appointment, and then I'll return about four weeks later for those results. June 8, to be precise. Hopefully, my mom's birthday will bring luck to all of us. Sara had the social worker sent to my "suite," but because I was asleep Civia talked to her and took some information about financial assistance (for copays and such).
The drip was completely uneventful. I slept through much of it, bliss. Then a woman came in and asked if I'd be interested in some sort of relaxation technique (what was it called, Civia?). Much, much more bliss ... and sleep. Suddenly I was released, feeling just a bit groggy from the drugs and the sleep.
We went from there to my appointment with Dr. Wu. She is still pleased, but I have to go back in three months. I won't get my nips for six months after I finish radiation, she said. Oh well. The stitch that's nearly poking through? Nothing to do about it unless it does actually poke through. The stitches should absorb back into my body.
Oh, forgot to mention! Barbara, the one I keep seeing at Penn, the one who called and helped me so much, she was there today! When I first saw her I was worried she needed more chemo or something, but she was just having her 6-month follow-up. Thank goodness. I could've run into her at Wu's office again, but she had a morning appointment and I went after chemo.
I signed up my whole family for the Komen Walk in Philly on Mother's Day. I'm not officially collecting pledges, but if you would like to donate you can email me and I'll let you know how. I'm walking in honor of the chemo message board I joined on breastcancer.org. We all deserve a longer go at life. These are wonderful, beautiful women. And they are brave, too, posting their bald heads on our board and on facebook!
A mention: if anyone needs any fancy hair accessories, check out this company: franceluxe.com. They send free headgear, along with beautiful notes and thoughts, to all cancer patients who make the request. Most of my chemo board now owns these lovely head wraps. This site also sells combs, clips, etc. This is a small, wonderful company.
Thank yous. Thank you Barb for knowing exactly what to do, and for promising not to ever have anxiety about being there for me ever again. Thank you Civia for taking me today and for breakfast and for listening to me kvetch. Ken, thanks for taking care of everything with Jonah this morning. Thank you chemo nurses for hitting the veins on the first try every time, so I really didn't need a port. Thank you Dad and Libby for calling and for being there even when you're 1200 miles away. Thank you, Snezana, for making Jonah's morning so pleasant. Jonah had fun at your house and Zora is now one of only two or three girls esteemed enough to earn Jonah's friendship. Debbie, the hamburgers and fixins were delicious, thank you! Thank you, all of you who write kind notes. Finally, last but absolutely not least: Mom, you save me all the time. Thank you.
The drip was completely uneventful. I slept through much of it, bliss. Then a woman came in and asked if I'd be interested in some sort of relaxation technique (what was it called, Civia?). Much, much more bliss ... and sleep. Suddenly I was released, feeling just a bit groggy from the drugs and the sleep.
We went from there to my appointment with Dr. Wu. She is still pleased, but I have to go back in three months. I won't get my nips for six months after I finish radiation, she said. Oh well. The stitch that's nearly poking through? Nothing to do about it unless it does actually poke through. The stitches should absorb back into my body.
Oh, forgot to mention! Barbara, the one I keep seeing at Penn, the one who called and helped me so much, she was there today! When I first saw her I was worried she needed more chemo or something, but she was just having her 6-month follow-up. Thank goodness. I could've run into her at Wu's office again, but she had a morning appointment and I went after chemo.
I signed up my whole family for the Komen Walk in Philly on Mother's Day. I'm not officially collecting pledges, but if you would like to donate you can email me and I'll let you know how. I'm walking in honor of the chemo message board I joined on breastcancer.org. We all deserve a longer go at life. These are wonderful, beautiful women. And they are brave, too, posting their bald heads on our board and on facebook!
A mention: if anyone needs any fancy hair accessories, check out this company: franceluxe.com. They send free headgear, along with beautiful notes and thoughts, to all cancer patients who make the request. Most of my chemo board now owns these lovely head wraps. This site also sells combs, clips, etc. This is a small, wonderful company.
Thank yous. Thank you Barb for knowing exactly what to do, and for promising not to ever have anxiety about being there for me ever again. Thank you Civia for taking me today and for breakfast and for listening to me kvetch. Ken, thanks for taking care of everything with Jonah this morning. Thank you chemo nurses for hitting the veins on the first try every time, so I really didn't need a port. Thank you Dad and Libby for calling and for being there even when you're 1200 miles away. Thank you, Snezana, for making Jonah's morning so pleasant. Jonah had fun at your house and Zora is now one of only two or three girls esteemed enough to earn Jonah's friendship. Debbie, the hamburgers and fixins were delicious, thank you! Thank you, all of you who write kind notes. Finally, last but absolutely not least: Mom, you save me all the time. Thank you.
Thursday, April 16, 2009
Flash Update!
No chemo until Monday!
My appointment for tomorrow had to be delayed because I have to have the Neulasta shot 24 hours later, and the office is not open on Saturdays to administer it. This is fantastic! I could practically kiss Aetna.
So tomorrow, which is supposed to be a beautiful day (not to mention the last weekday of spring break), I'm free! Ken can go to his reenactment without worrying about me, and I can take the kids somewhere fun, enjoy the weekend. The new gym I joined is opening tomorrow, so I can check that out, too.
Oh yeah: my dad's advocate friend got me answers in about ten minutes. She found out that as long as the shot is administered in the doctor's office it's covered 100%, no copay. You probably figured that out during the first paragraph, but I figured I'd throw it in there just in case.
I already took my steroid pills today, but I'll have another steroid day on Sunday. Maybe I'll put off the cleaning for now, and go for a run instead. By the way, I was planning to delay my 4th and final treatment to the following Monday or Tuesday because of Mother's Day and the Komen Walk, so this just puts me on a clearer track to do that. It doesn't interfere with my end date at all, still slated to be May 11 or 12.
Yay!
My appointment for tomorrow had to be delayed because I have to have the Neulasta shot 24 hours later, and the office is not open on Saturdays to administer it. This is fantastic! I could practically kiss Aetna.
So tomorrow, which is supposed to be a beautiful day (not to mention the last weekday of spring break), I'm free! Ken can go to his reenactment without worrying about me, and I can take the kids somewhere fun, enjoy the weekend. The new gym I joined is opening tomorrow, so I can check that out, too.
Oh yeah: my dad's advocate friend got me answers in about ten minutes. She found out that as long as the shot is administered in the doctor's office it's covered 100%, no copay. You probably figured that out during the first paragraph, but I figured I'd throw it in there just in case.
I already took my steroid pills today, but I'll have another steroid day on Sunday. Maybe I'll put off the cleaning for now, and go for a run instead. By the way, I was planning to delay my 4th and final treatment to the following Monday or Tuesday because of Mother's Day and the Komen Walk, so this just puts me on a clearer track to do that. It doesn't interfere with my end date at all, still slated to be May 11 or 12.
Yay!
Tuesday, April 14, 2009
Not Much to Say
It's spring break, and though I didn't plan for spring break to be during my third week, I'm thrilled that it is! Other than itching, I feel completely like me. The itching, well, I'm practically tearing off my skin. My head is much better. The oncologist prescribed a topical antibiotic. However, as my head has been healing I haven't wanted to wear my wig. I've gone out a lot wearing a buff, which is what contestants wear on the show Survivor. The buffs are easy to wear, wouldn't fall off in the strongest wind, and are so comfortable. I was self-conscious going out like that at first, but now I don't even think about it. At home I've given up and started going bald. I warned the kids that when I was in the bedroom I had to air out my head so it could heal, and it turned out they thought nothing of it. So now I just go around the house with naked head. One of these days I'll forget and walk out of the house like this. Could you imagine?
So it's spring break, and I'm hoping to do lots of fun things with the kids. We went bowling and to dinner with the Glasses on Saturday, which of course was a blast. Yesterday I took the kids to Atlantic City. It was fine when we were shopping at the outlets, but the boardwalk was like a tremendous wind tunnel. Coming back from Johnny Rocket's to Caesars, we made a run for it. Well, Allison was too cool to run with us. Today it's raining and we haven't done much of anything. I'm getting laundry done. Tomorrow it's supposed to rain again. Thursday I want to go up to NYC, but Allison wants to hang out with friends. We'll have to see if we can manage both. It is my good steroid day, after all. And then Friday morning I'm hoping to walk around Center City with the three of them, then have Ken take them home before I have to head to Penn. Ken will be gone for the weekend. Anyone who wants to entertain any of my kids while I hopefully sleep, they're all yours. Especially Jonah.
Oh, forgot to mention: I'm having my first problem with Aetna. Last treatment they paid 100% for my Neulasta shot, and this treatment, they've apparently "changed their procedure." They want me to pay $350 out of pocket! Crazy. So I don't know if I'm getting the shot. My dad has a friend who is an advocate, and she's willing to help me. I hope she can!
So it's spring break, and I'm hoping to do lots of fun things with the kids. We went bowling and to dinner with the Glasses on Saturday, which of course was a blast. Yesterday I took the kids to Atlantic City. It was fine when we were shopping at the outlets, but the boardwalk was like a tremendous wind tunnel. Coming back from Johnny Rocket's to Caesars, we made a run for it. Well, Allison was too cool to run with us. Today it's raining and we haven't done much of anything. I'm getting laundry done. Tomorrow it's supposed to rain again. Thursday I want to go up to NYC, but Allison wants to hang out with friends. We'll have to see if we can manage both. It is my good steroid day, after all. And then Friday morning I'm hoping to walk around Center City with the three of them, then have Ken take them home before I have to head to Penn. Ken will be gone for the weekend. Anyone who wants to entertain any of my kids while I hopefully sleep, they're all yours. Especially Jonah.
Oh, forgot to mention: I'm having my first problem with Aetna. Last treatment they paid 100% for my Neulasta shot, and this treatment, they've apparently "changed their procedure." They want me to pay $350 out of pocket! Crazy. So I don't know if I'm getting the shot. My dad has a friend who is an advocate, and she's willing to help me. I hope she can!
Wednesday, April 8, 2009
Why did I put this off?
I normally enjoy writing here. It feels therapeutic sometimes, and other times I just like knowing the information is going on a permanent record. But after my little cat eulogy, I stopped knowing what to say, I guess. It's not like I'm spending every waking moment mourning Brodi. The poor thing was so sick, she's better off, and it's not like my house is suddenly empty.
Enough about that. Let's see. I'm still not completely bald. I have these tiny hair blades scattered all over my head. Sometimes I go over my head with a lint roller. The hairs are loose in there, and they're so sharp. Should I tell this part? Oh, it's so gross. Okay, skip if you don't want to hear gross stuff. My whole head is covered with acne. Not my face. My face is fine. But my head is a disaster, completely red. I don't know what to do about it. It hurts, it itches, it even gives me a headache sometimes. Do I call the oncologist? A dermatologist? I don't know. This just seems completely, well ... me. I started off continuing to wash it with the same shampoo, but the shampoo is for color treated hair. Not only don't I have color, I barely have hair. So for the past few days I've switched to washing my head with my Dove soap. I don't know what to try next. ProActiv? Ha!
Yeah, enough about that, too. On Sunday we went to the JCC Camp, and sure enough, Jonah LOVED it. He wanted to start the next day. Please keep your fingers crossed, even though we won't hear until May 15 if he gets the scholarship. While we were there I ended up in a conversation with a nice dad, and it turned out that not only is he is a neurologist at Penn, he's a former patient of Dr. Fox's mentor (and he continues to see Dr. Fox). He had Hodgkins when he was a student at Penn, applying to med school. Did he say that was 17 years ago? That sounds right. Of course he loves Dr. Fox, and he made me feel really good about the whole thing, without even knowing my prognosis (which is good, anyway). He made me think about AFTER, which I hardly ever do. Not even just AFTER as in after treatment, after my hair grows back, etc. AFTER, like years from now, when this is a distant memory. It was wonderful. Of course, the other kind of after sounds good, too. It just seems like an indulgence now to think of that. The only way I can get through this is day to day to day. I compare this day to last week, or to how I might feel next week, but that's the best I can/will do. I think if I compare myself to normal I just won't be able to manage. This way, I can tell myself that I'm doing better than Saturday, and feel optimistic. And on the worst days, I can remind myself that the next days will be better. That's it.
And these days are good. I'm comparing to three weeks ago, when my blood count had dropped and I missed Allison's birthday dinner. I'm fine now, knock wood, other than making trips to three different ShopRites yesterday and still forgetting an ingredient for the seder. I'm comparing to Saturday, when I still had the sour taste in my mouth and felt completely frustrated. I looked in the mirror this morning right before getting into the shower, and even with my nearly bald, red head and my blank breasts, I recognized myself. I was smiling at the mirror, and I didn't know why, and I couldn't make myself stop. Isn't that weird? But I recognized myself, even like this.
Enough about that. Let's see. I'm still not completely bald. I have these tiny hair blades scattered all over my head. Sometimes I go over my head with a lint roller. The hairs are loose in there, and they're so sharp. Should I tell this part? Oh, it's so gross. Okay, skip if you don't want to hear gross stuff. My whole head is covered with acne. Not my face. My face is fine. But my head is a disaster, completely red. I don't know what to do about it. It hurts, it itches, it even gives me a headache sometimes. Do I call the oncologist? A dermatologist? I don't know. This just seems completely, well ... me. I started off continuing to wash it with the same shampoo, but the shampoo is for color treated hair. Not only don't I have color, I barely have hair. So for the past few days I've switched to washing my head with my Dove soap. I don't know what to try next. ProActiv? Ha!
Yeah, enough about that, too. On Sunday we went to the JCC Camp, and sure enough, Jonah LOVED it. He wanted to start the next day. Please keep your fingers crossed, even though we won't hear until May 15 if he gets the scholarship. While we were there I ended up in a conversation with a nice dad, and it turned out that not only is he is a neurologist at Penn, he's a former patient of Dr. Fox's mentor (and he continues to see Dr. Fox). He had Hodgkins when he was a student at Penn, applying to med school. Did he say that was 17 years ago? That sounds right. Of course he loves Dr. Fox, and he made me feel really good about the whole thing, without even knowing my prognosis (which is good, anyway). He made me think about AFTER, which I hardly ever do. Not even just AFTER as in after treatment, after my hair grows back, etc. AFTER, like years from now, when this is a distant memory. It was wonderful. Of course, the other kind of after sounds good, too. It just seems like an indulgence now to think of that. The only way I can get through this is day to day to day. I compare this day to last week, or to how I might feel next week, but that's the best I can/will do. I think if I compare myself to normal I just won't be able to manage. This way, I can tell myself that I'm doing better than Saturday, and feel optimistic. And on the worst days, I can remind myself that the next days will be better. That's it.
And these days are good. I'm comparing to three weeks ago, when my blood count had dropped and I missed Allison's birthday dinner. I'm fine now, knock wood, other than making trips to three different ShopRites yesterday and still forgetting an ingredient for the seder. I'm comparing to Saturday, when I still had the sour taste in my mouth and felt completely frustrated. I looked in the mirror this morning right before getting into the shower, and even with my nearly bald, red head and my blank breasts, I recognized myself. I was smiling at the mirror, and I didn't know why, and I couldn't make myself stop. Isn't that weird? But I recognized myself, even like this.
Friday, April 3, 2009
What a week
The good news is, this treatment is still easier than the first. I guess just because I'm better able to anticipate the side effects, and also because I've been taking walks everyday. The general fact that April is easier than March might be affecting how I feel. I made it through the work day on Wednesday with no trouble just because it was my easiest subbing day ever (3 very sweet, self-contained 6th graders with two aides), but I still felt tired. When I left my stomach was upset, so I was glad to get home.
Yesterday. Not a good day. First, I had no appetite (still don't), and then after I got my kids home from the dentist we found that our cat, Brodi, had passed away on the laundry room floor, right next to her litter box. Ken and I adopted Brodi after returning to LA from our honeymoon, almost 16 years ago. He had gone to Petco to pick up food for our dog, and a cat rescue group was sponsoring an event. Ken fell instantly in love with Brodi, made me follow him back to the store to see her. She just looked like a cute little tabby kitten to me, but he was so enthusiastic I couldn't refuse. She was 10 weeks old at the time. She went through the Northridge Earthquake (not very well, but she went through it), moved to the East Coast with us, watched all three kids grow from nothing, suffered the indignities of living with not one, but two puppies who were larger than she, and in the end she just loved her sun spots in the dining room. She hadn't been doing well lately, we knew this was coming. Yesterday she was so wobbly, I wanted to do something for her, to give her peace. She took care of it herself, but I wish it had happened while we were home. Allison is particularly sad. We're going to have a funeral later today and bury her on the side of our house (where she always reappeared after her annual April walkabouts).
After that it doesn't make sense to write about much else. Let's hope for good baseball weather for this weekend, and let's hope Jonah likes the JCC Camp in Medford, where I'm hoping he'll go this summer.
Yesterday. Not a good day. First, I had no appetite (still don't), and then after I got my kids home from the dentist we found that our cat, Brodi, had passed away on the laundry room floor, right next to her litter box. Ken and I adopted Brodi after returning to LA from our honeymoon, almost 16 years ago. He had gone to Petco to pick up food for our dog, and a cat rescue group was sponsoring an event. Ken fell instantly in love with Brodi, made me follow him back to the store to see her. She just looked like a cute little tabby kitten to me, but he was so enthusiastic I couldn't refuse. She was 10 weeks old at the time. She went through the Northridge Earthquake (not very well, but she went through it), moved to the East Coast with us, watched all three kids grow from nothing, suffered the indignities of living with not one, but two puppies who were larger than she, and in the end she just loved her sun spots in the dining room. She hadn't been doing well lately, we knew this was coming. Yesterday she was so wobbly, I wanted to do something for her, to give her peace. She took care of it herself, but I wish it had happened while we were home. Allison is particularly sad. We're going to have a funeral later today and bury her on the side of our house (where she always reappeared after her annual April walkabouts).
After that it doesn't make sense to write about much else. Let's hope for good baseball weather for this weekend, and let's hope Jonah likes the JCC Camp in Medford, where I'm hoping he'll go this summer.
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