November 30th, 2012 §
Good news first: I’ve been asked to be a blogger for the new Huffington Post section called Generation Why which focuses on young people and cancer. At first I had to look to my left and right and ask, “Me?” because I haven’t really thought of myself as young in a while. But certainly issues facing people like me with cancer can be unique. The necessary pushes and pulls of being social for my children with the always magnetic desire to just be alone will be one theme I will write about for sure. A friend commented that he was “impressed” I was writing for HuffPo… I will have to remind him that Jenny McCarthy does, too, so it might not be as impressive as he thinks!
That said, I’m very pleased to have a wider audience for my writing. I hope the readers and commenters will be as nice as you all have been. The first post should go up this week and I’ve decided to have them use this week’s post “Alone” as my inaugural piece because the response to that one was overwhelming. I might as well start with a bang! I hope that piece will be one that represents my perspective well.
So.. the bad news is not terrible, but here is the latest news. While I started with very good tolerance to the 4th round of chemo, the end of the round ended up bringing hand/foot syndrome (palmar-plantar erythrodysesthesia) from the Xeloda. Hand/foot syndrome is not the same as neuropathy (though it may include some of those symptoms), which many people on chemotherapy experience.
Hand/foot syndrome is associated with a few particular drugs, Xeloda is one. The capillaries in your hands and feet leak and/or rupture, causing the chemo to spill into the extremities. This causes them to be extremely red, swollen, painful, sensitive to touch, cracked, peeling, and potentially ulcerating. Numbness and tingling also accompany the condition.
For the past month I’ve been trying to keep these effects at bay, but eventually the toxicity builds up. Fine motor activities like tying shoes are hard at the moment, anything that touches/puts pressure on hands and feet. Thankfully I have some shoes with furry insides and cushioning. Socks must be worn 24/7 and slippers at all times. Holding the steering wheel is uncomfortable but doable, thankfully. So many people have suggested I should do something relaxing like go for a massage or manicure/pedicure. Unfortunately between the broken ribs and a “no touching” order for hands and feet these things will have to wait!
I had to skip my last dose (there are 14 in each round right now) of chemo yesterday to prevent a flare. The plan will be to reduce the chemo dose to 3 pills in the morning and 4 at night next round to see if that will be enough of a reduction to stop the progression of the syndrome. If it isn’t, we’ll reduce again. The reduction in dosage is not rare. My understanding is that tolerating 4/4 for 7 days on and 7 days off for more than a few months is pretty unheard of.
I’ll have bloodwork on Monday, December 3rd and then meet with my local oncologist on Tuesday the 4th for a strategy meeting and check on the hands and feet. I’ll also receive my monthly IV of Zometa for my bones at that time.
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Tomorrow (Saturday) sometime between 7-8 AM I’ll be on Robin Kall’s radio show which streams at www.920whjj.com. Stay in your PJs and join us! I think it will be after 7:15 sometime as the 2nd segment.
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Thanks for the continued support and I’ll have a more creative post this weekend.
November 24th, 2012 §
I can see how isolating metastatic cancer can be already.
It has become hard for me to be around other people.
I find myself hiding as much as possible.
When I am in the company of others my mind wanders.
I can’t focus. I feel the need to retreat.
For the time being I just can’t relate to others’ lives which only 6 weeks ago were so similar to my own. Now… we are a world apart.
It’s not their fault. It’s just that circumstances make it so that I am selfish. I try to conserve my energy as much as I can.
Already I can see relationships suffering. There is a fine line between giving space and putting distance. Some are already dropping away, and we’ve only just begun. Others have risen to the occasion and helped more than I could have dreamed. Only true friendships are going to make it under these circumstances. Sometimes the isolation comes from being shut out. Sometimes it comes from locking yourself away.
Phone calls go unanswered, emails often do too. Thank you notes don’t always get written, social commitments get canceled or never scheduled in the first place.
I know that people cannot truly understand.
I don’t want a support group right now because metastatic cancer has a wide range of outcomes. I don’t know if I will be in a rapidly progressing group or not. I don’t know whom to look to that is “like me.” There is no way to know which group I will be in, who my peers are.
Right now I am very sensitive to death, to pain, to suffering. It’s very hard for me to see right now. I’m too raw. I just don’t think I’m ready for a group. But I won’t say I never will be. I need to talk to my oncologists about whether they have patients like me.
It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about two months ago.
Now those complaints just annoy me, or make me sad.
I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock. I just don’t want it to be this right now.
One of the things that bothers me the most about this disease is the knowledge that the way I feel right now is the best I will ever feel for the rest of my life. It’s only going to get worse. That thought terrifies me.
When you feel crappy you want the time to go faster. You just want to get through it.
The problem is that what you may not have is time.
It’s a conundrum. You want the time to pass, but this is the only time you have.
I know so many people say, “No one ever knows how much time they have. You have to make the most of every day, of every moment.” I know that’s true. But the knowledge that there is something identifiable in your body that is a threat, is most likely to be that which kills you, bears a different weight. Of course the doctors don’t know exactly how much time it will be. There is no crystal ball.
Everyone tells me the stories of friends and relatives who were told they only had months and years later they are still alive and doing okay. I am told these stories every single day. I get it. I do. And I love them, they give me hope. But often those people’s diagnoses and particulars bear no relation to mine. Additionally, there are also stories of the people in the other group, the ones who thought they had years and didn’t. People probably have the good sense not to tell me those stories. But they are out there. It’s not that I focus on the negative. It’s not that I necessarily think I will be in that group. But anything is possible. On both sides.
The part that scares me: I’m only at the beginning. I hope that I will get stronger, gain acceptance as I get used to this diagnosis. But I’m not sure about that. I truly believe I could handle this better if I didn’t have so much worry about my children and what effect this will have on them. I wish I could protect them, shield them from this agony.
There are good days and bad days. I must do my best. But being the one everyone is watching takes a toll. Everyone will take their cues from me. I will set the stage for how my friends and family will deal with this: how I handle metastatic cancer matters. I am laying groundwork. I must do it right.
Some days that is an overwhelming task.
“Doing it right” doesn’t mean I have to be positive all the time. Doing it right means I have to be honest. It means I get up each day and do the best I can. For myself, for my husband, for my children, for others who may have cancer and those who will get it. It’s okay to be scared, and angry, and sad, and everything else.
It’s all part of this.
And for me, so is sharing.
November 21st, 2012 §
I load the dishwasher, put in a load of laundry and buy Colin a new white dress shirt
Because I can.
I walk the two blocks between the doctor’s office and the drugstore on a crisp autumn day
Because I can.
I give my children an extra hug, just one more kiss, an additional “I love you” before the bus
Because I can.
But still I worry about today, tomorrow, and the next day.
How can I not?
I put makeup on yesterday.
I can tell it puts people at ease.
If I look “healthy” then they can relax.
If I don’t look sick they won’t have to worry how to act or what to say.
They tell me “You’d never know to look at you. You’d never know you have cancer. You’d never know you’re sick.”
Some moments that’s true. Some moments I feel good. Some days, in fact. And I treasure those.
Some days it’s a lie. It’s not how I feel.
I know it’s a compliment. I take it as such.
The phlebotomist asked me at my oncology appointment yesterday if I’m ready for Thanksgiving.
I wasn’t sure whether to cry or laugh.
Ready?
I don’t know.
Giving thanks. That’s a loaded phrase.
I am grateful I have some time. I am thankful for the kindness that gets shown to me every day by my family and friends.
I appreciate every person who tells me they are lifted by my words, learn from them, say they express something they have felt or even just wondered about.
For every email I get of support,
Every offer of help,
Every playdate,
Every Facebook post, photo, comment
I give thanks.
But cancer sucks. This diagnosis is my nightmare.
But I also know that tragedies happen to people every single day. A life can be lost without warning. I have learned of two sudden deaths of friends’ loved ones this week and I see the pain those losses have caused. I learned it for myself when my mother-in-law died. She did not have time to say her goodbyes.
I don’t like that my life revolves around this disease right now. I try to keep my life focused on others as much as I can. I try to check in on friends who have their own troubles. I try to keep up with the kids. I try to be a good wife and keep the house running. I wish I could be a better wife right now. I try to be strong. I try to suffer on my own time. I try at these things but don’t always accomplish them.
It’s an isolating predicament. Few can know the anguish, the daily trials, all of the parts of my life which don’t get shared with anyone. I share some here, of course, and with friends, but much of it is my own. For now, this is how it needs to be while I continue to process and try to make sense of this new chapter.
Thanks to you all.
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I was honored to be featured in this blogpost from the American Cancer Society titled “Cancer survivors are truly remarkable people” which focused on the post I wrote in the days after my diagnosis giving tips on how to talk to children about stage IV cancer.
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Many have asked about the fractures on my left side. The one that is painful is the one in a rib up near my collarbone. That will probably take two months to heal. It is a fracture caused by cancer in that bone. The cancer must shrink first. Only then can the bone heal. So it will be a slow process.
I start round 4 of chemo tomorrow, on Thanksgiving night. Same full strength dose because I was able to tolerate the last round again. Same regimen: 7 days on, 7 days off.
November 17th, 2012 §
Of course memories and legacies are on my mind all the time now. I can say for sure that I won’t be remembered for my cooking. I might be remembered for my lack thereof, however! One thing I make well is a citrus cheesecake. I’m quite sure Clarke married me for this dessert. I’ll share it here someday soon.
I miss Barbara, my mother-in-law, every day. It’s been three years since her death in a car crash. I wrote a post about Thanksgiving two years ago and referred to one of Barbara’s traditions– a delectable treat called cranberry ice. So many people asked about it that I posted the recipe. I thought I’d share it here again because I know some people have already made it part of their own holiday traditions. I think that’s just lovely. I’m reposting the information here in case you want to give it a try:
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The way we serve cranberry ice is as a side dish, in place of cranberry sauce. The tart, sweet, cool flavor is delightful.
I like to make a double recipe so there are leftovers… I am giving the instructions for that; if you want to halve it, you may. Because you need to beat it with a mixer as it freezes, don’t make it late at night.
You will need:
2 bags of fresh cranberries
2 packets Knox gelatin
Lemon juice
2 cups of sugar
2 cups of water
Freezer-safe bowl and a food mill, ricer, or strainer
Directions:
Boil the cranberries fully until the skins fully split. Drain the cranberries and run them through a ricer, food mill, or strainer to remove the skins. (I use a food mill that Barbara gave me. It has a hand crank on the top and you turn it around and around and the skinned cranberry puree drops out the bottom. A more updated version is here). Once you have all of the cranberry puree in a freezer-safe bowl, set aside. Take the 2 packets of gelatin and dissolve in 2 cups of water. Add this to the cranberries. Add about 2 cups of sugar (less if you like it very tart). Then add a bit of lemon juice to taste.
Take the bowl and put it in the freezer. As it freezes, take it out a few times (2-3) and beat with electric beaters for about 30 seconds to fluff it up. This will keep the texture airier. If you don’t do this, the consistency will be far too dense and hard. Once frozen, serve with your meal using an ice cream scoop. It doesn’t melt immediately because of the gelatin. Barbara always served in lovely cut-glass footed bowls. I haven’t found ones I like yet, so mine was served in regular bowls today.
November 15th, 2012 §
Each day is different. Each moment, too.
It still seems surreal, this diagnosis of metastatic breast cancer.
It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, IV infusions, medication refills all start to fill my calendar.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes. Tristan’s little voice saying, “I love you, Mama. You’re the best Mama in the whole wide world” is enough to make me misty.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
I try to be the one to do things with my children as much as I can. Even if there is a babysitter in the house Tristan always reads to me at night for his homework: that is sacred. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.
I try to do the little things: helping Colin with a school project, keeping Paige company while she does homework, watching a sports practice if I can. I go to the grocery store and I work on the holiday card. I still take pleasure in getting the stubborn stain out of Clarke’s dress shirt that the dry cleaner couldn’t.
My motto is that I will do as much as I can for as long as I can.
I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed the first time — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down. Of course now the fear has been realized. I am living it. I am living my nightmare, one many people share.
And yet, the morning comes.
I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends.
Each day is one more than I had the day before.
But let’s be clear: there is no joy in this disease.
My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long with that one last? My body holds the answers, but it’s not showing its hand yet.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
People in front of me in line at the gas station don’t know there’s chemo in my purse.
I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible.
I’m still processing. Reeling. But while I’m doing that I’m living.
November 12th, 2012 §
I had the honor of being interviewed by Julie Klam, Ann Leary, and Laura Zigman today on their radio show “Hash Hags.” I’m such a fan of the show and of these three authors; I always save the podcast to listen to while I fold laundry because it makes mundane tasks more fun. The truth of the matter is that I have a lot to say, which I guess is how I have written over 120,000 tweets. I think I will always be talking, sharing, asking, listening.
I really enjoyed being interviewed but of course I’m now kicking myself thinking of all of the things I wanted to say and didn’t. And of course, I love to talk about non-cancer things too.
Unfortunately, subjects like friendship during illness (especially relevant given Julie’s new book Friendkeeping) and how to help children deal with a parent’s illness just were too big to get to today. I also plan to write about these subjects more in the weeks ahead. Also, I will be writing about friendship and hope to get Julie here for a Q&A too.
If you’d like to listen to Hash Hags, click here.
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Tuesday I’ll be at Sloan Kettering to meet with my oncologist there to talk about how I’m doing on chemo, side effects, and the plan for the next month. I’m midway through the third round and doing well. I felt really good today and am glad for that.
November 9th, 2012 §
Started chemo again last night, counts were good and side effects tolerable enough that we’re doing full strength again this time. 2000 mg Xeloda twice a day for 7 days, then 7 days off. The side effects are usually worst on days 4/5 through 9/10. Fatigue, stomach pain, GI upset, nausea, loss of appetite are the worst. Hand and foot syndrome is to come but haven’t had problems yet.
My potassium is low this week and my dad had a great suggestion for this (especially when eating is difficult). Low sodium V8 is packed with potassium. It has twice as much as regular V8. If anyone out there needs a good source, the low sodium stuff is it!
I’ve given up nailbiting and am shocked that this was the month I was able to do it.
I’ll be back at Sloan Kettering in a few days… and hopefully soon will be able to write more creatively again beyond these boring treatment updates. I know so many of you aren’t sure whether to contact me or leave me alone, but I hope these updates at least let you know the basics. It also always lets me thank everyone for the many ways you are helping me right now.
xo,
Lisa
November 5th, 2012 §
A very short update because I have not updated for a while. We were hit by Hurricane Sandy and are still without power after 8 days. We are waiting for a Nor’easter to arrive on Wednesday which may cause further damage. A tree hit the house, fortunately came to rest on the chimney which prevented us from having the tree through the roof. The kids were out of school all week which was challenging since it was my week on chemo. But we got through it. My parents came and rode out the storm with us and I am so grateful for their help. They aren’t married anymore but they really do come together to help me, which is just what the kids and I needed.
We’re waiting for power to return and tomorrow (Tuesday) I will be back at the oncologist’s office (temporarily relocated because a lot of Greenwich is still without power as well). I’ll do bloodwork, meet with my doctor, and then get an IV dose of Zometa to help strengthen my bones and hopefully reduce some of the pain I am still having in my left shoulder from the cancer-caused fracture. I should probably wear a sling to help with the pain but I refuse to do it because I know it will cause so many questions of “What did you do? How did you hurt yourself?” I just don’t want to talk about it.
So many have been affected by this storm. My heart goes out to them.
I have a hard time right now dealing with the fact that once we get through the immediate cleanup from this storm I will still have this blasted cancer. And be dealing with it. Forever. And right now that is something I am having a hard time dealing with.
I do as much as I can each day to be normal… I went to the laundromat during the power outage. I did the grocery shopping today. I play Yahtzee and give snuggles. I don’t have energy to do as much as I want. I still ask for help. I have friends who’ve offered so much assistance and I am grateful. I am loved and I know it… I just am working through the mental anguish of this diagnosis.
I long for problems that can be fixed. I long for problems that have solutions.
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