I was so happy to count down those last seconds with close friends that ultimately kicked 2011 to the curb. I am still getting chemotherapy. I still have a long road ahead but it was very therapeutic to put the initial parts of all of this behind me and write 2011 off as the year of surgeries and cancer. 2012 is slated (by me) to be the year of survival. It will be the year I rise out of the burning ashes that breast cancer chucked me into and the year that I transition into survivorhood.
I came out of the 2012 gate swinging. Whatever had me down in December, was overcome by the coming of the new year. I felt pretty great for my first 3 treatments. My energy seemed to return, my blood counts were good with enough white cells to beat infection and a hemoglobin of 11. I was hitting the treadmill and the weights without too much fallout.
Recently, I've been down. The fatigue has kicked in again and I feel like I am wearing a lead suit. I've put on weight and have progressed into full-blown menopause with hot flashes and strange internal temperature regulation issues keeping me up at night. My gastrointestinal system is rebelling. My eyelashes are gone and my eyebrows are trying hard to follow suit. My skin is so dry, I look like a raisin. I have bloody noses daily due to the dry, cold, California air despite the new humidifier. I am struggling. While I am successfully fighting my way through treatment, I have unsuccessfully managed to prevent turning into a cancer patient. I am very different than my former self and from those around me.
The exhaustion is staggering. I wake up feeling pretty good, ready to tackle my day. I get kids ready for school, make myself some breakfast and within an hour, I'm knackered. I try to push through it. All my life, I've tried to push through the unpleasant parts. After 25 years of sitting on freezing chairlifts or 12 years of ER nursing, I've learned that complaining and giving up do not serve me well. I've learned to overcome many obstacles in my life by charging straight at them. I've applied this theory to chemotherapy treatment and it is grossly ineffective. The harder I charge, the worse I get. Interestingly enough, the exhaustion does not manifest itself in physical disability. I don't get so tired that I collapse and sleep. Instead, my brain stops working. I no longer have a filter and my communication becomes short, curt, and abrupt as if using fewer words will save energy. When I am exhausted, I can no longer find words to describe my feelings nor communicate the fact that I'm going downhill fast. The inability to verbalize turns into frustration, which turns into anger which sucks energy that I already do not have. I lose my temper quickly with my kids. Patience flies out the window and all of us half expect my head to start turning 360 degrees. I said something terrible to my husband the other day. It was awful. The words that came out were not the message I wished to convey and they were hurtful and mean. I have no inhibition, no emotional control. I absorb the emotions around me, which with 7 and 9 year olds, tends to be something similar to a really bad acid trip.
I am not sure if it is the menopause or the chemo. The term "chemo brain" has been recognized as a significant side effect, and up to this point, I feel that my brain has not been hugely affected. However, now, my memory is worse than ever. Thoughts and important appointments drift in and out like wind. I've missed two massage appointments, which tells me I'm really losing it because with normal brain activity, I would selectively dump my entire schedule to make that highly coveted massage appointment. I am unable to multi-task. I have lost my ability to focus on the priority of the moment. "Squirrel!" is the new joke among my husband and friends as if I were an untrained puppy. I am easily distracted from the task at hand. The effects on my brain are frightening. I am told it is temporary but I only half believe it. I can barely remember the events of each week and all of my memories are hazy. I realize that I am hitting rock bottom. My physical and mental abilities are significantly affected and the person I have become is not the person I set out to be.
With two more treatments left, I know I'm going to make it. I have managed to dodge the evil germ and avoid infection which was my biggest fear surrounding my treatment. My heart is holding up great which was another concern given the cardiotoxicity of the medications. I meet my radiation oncologist tomorrow and start gearing up for 5 weeks of daily radiation. I'm told radiation is far easier than chemo, and I am hoping that the side effects of my chemo will subside. Sadly, because of the daily radiation treatments and because I am getting those treatments in San Francisco, I will be leaving home and staying in San Francisco 5 days a week. New challenges are on the horizon.
Because I know I will cross the chemo finish line in two weeks, I have allowed myself to go down. I run the gamut of emotions but I am not depressed. I am simply recognizing that this is the bottom. This is one of the darkest and scariest places I've ever had to go. I am tired and each day is difficult. My thoughts are random and unorganized and I am definitely the weak one of the herd. If this were the Serengeti, I'd be picked off in a heartbeat.
The importance of this is that I would prefer not to revisit this place. It means that for the rest of my life, I will compare this place to other dark places and this one will always win. I am letting it ruminate. I need to appreciate its value so that when times are good, I can revel in them. Soon, I will be digging myself out of this hole which will mean huge lifestyle changes with regards to diet and stress. My new, post chemo life is about to begin, and I don't ever want to forget what these last days of chemo are trying to teach me.
Every day, I fight to maintain normalcy. Whether it's a workout, making my own lunch or testing for my next belt at MMA, I fight the deterioration everyday by doing what I can. I can't stop the side effects, but I can slow them down. Hopefully, I can slow them down enough so that by the end of my last treatment, there is still a hint of me left. I need just a little of me to rebuild the new me, but I fear that these last two weeks will take the most of me.
Thursday, January 26, 2012
Monday, January 16, 2012
Sarah
There's a woman at the infusion center that comes through right around lunchtime every Tuesday and offers to get lunch for the patients. She's an older woman, roughly 70's. She wears a turtleneck with a blue vest that is covered in pins. Each pin represents some cause, some group or something interesting. She's part of UCSF's Peer Support program, and she's a 12 year Breast Cancer survivor.
"Can I get you anything? Sandwich? A blanket? A martini? Dirty magazine?"
She's got a quick wit.
When my friends flew all the way from the eastern seaboard to take me to chemo, they got to meet Sarah. We were all wearing our "Save Second Base" T-shirts that Polly brought and Sarah got a huge kick out of them. Thus sparked the conversation about breast reconstruction and the like.
"Oh, I didn't bother with that," offered Sarah. "When you go that route, you're kind of stuck with what they give you. I prefer to be more flexible, so I just go with the adjustables."
"The adjustables?" I inquired.
"Yeah. Depending on how I'm feeling, I can choose to be an A or a double D!"
Now, all three of us are staring at her chest. She appeared to have two equal, A-cup sized bumps under her sweater.
"What are they?" I asked.
"Go ahead, have a squeeze," She retorted.
I was caught between a rock and a hard place. If you knew my friend Polly, you would know that the look on her face was the exact look of "Go ahead, I dare you. If you don't grab this woman's fake breasts, I'm going to be very disappointed in you." Meanwhile, Edith was giving me the eyebrows up version that said, "After all, we came all this way....."
So there I was, in the infusion center, feeling up the lunch lady.
They were like hollofil, the stuff they use to put in sleeping bags and ski gloves. Sarah explained that she stuffed her bra with the stuff and it was great. Easy for her. She had a double mastectomy. I had a left only. There was no way that I was going to get hollofil to look like the right sided ski jump I had going on. She went on to say that there were all sorts of other options such as silicone prosthetics. She said that they were a little spendier but they looked a little more "life-like." She also referred me to the gift shop on the first floor where they sell them.
A week later, I had to make two trips to San Francisco. My counts had dropped and I needed an injection of a drug that would stimulate my blood cell production and keep my immune system alive. I drove down by myself. While I was there, I spent some time with the gift shop ladies who proceeded to explain all the possibilities of breast prosthetic options. Before i knew it, I was in a dressing room trying on bras and silicone implants. I was amazed at how close to real the implant looked.
Now, I'm not one of those girls whose femininity is all tied up in the size and shape of her bust. I'm perfectly content being small chested and have no qualms about lopping off the right side to match the left. However, that requires major surgery. I'm not in a place to go there right now. However, all of my shirts fit just a little funky. They hang sideways, so my neckline on all of my shirts looks like I put my shirt on the wrong way. It's distracting and when people figure out why my shirt looks so screwy, they get a pitiful look on their face. It's annoying. I decided that with Christmas and New Year's approaching, i was probably going to want to wear something pretty and strapless and it would look really dumb hanging off one side. I got the implant.
Ironically, insurance companies are supposed to cover this as a prosthetic. Your doctor can write you a prescription for a breast prosthesis and the insurance company will supposedly reimburse you, unless they scream that you got it "out-of-network" which means they're not going to pay for the nice ones. They'll send you down to the Breast Bargain Basement, their "in-network" breast prosthetic source. In other words, if you buy a used one, insurance will cover it. Insurance companies are weasels. They try to get out of everything.
Anyway, the next day, I came back and told Sarah about my experience. She was moved and excited because she felt she had made a difference. I told her if she really wanted to feel like she was making a difference, she could bring me a grilled cheese sandwich with turkey and tomato....
Weeks later, I got approached by Sarah and the media folks of UCSF. They wanted to interview me about Sarah and what she brings to the infusion center. Of course, I was honored to say yes and happy they would ask me. Seemed like there weren't a lot of patients who had the same sarcasm and gallows humor as Sarah and I had. We were two peas in a pod.
I was suddenly surrounded by people who thought it was so great that I would be interviewed and what a big deal it was. Of course, I knew that Sarah's humor and presence in the infusion center was important for patients and nurses because she is a seasoned resource. She's been through all the hell that breast cancer treatment offers and she's come out on the other side grateful for her life and an opportunity to make a difference in someone else's. Certainly, I probably wouldn't call the Peer Support line on my own but when the Peer Support program comes to you, it's nice to meet a woman who not only will offer you guidance but let you feel her up in the process.
Breast cancer has a strange stigma. Not everyone talks about it because women feel differently about their breasts. Some women are deeply affected by the loss of their breasts as a loss of their femininity or their identity. I don't miss my left breast but I realized that I do miss filling out my shirt in a semi-normal way. I found that getting information from other people about breast stuff was seemingly uncomfortable for people to talk about. Spark up a conversation about breast reconstruction and everybody thinks you want to be a stripper. I was very grateful that not only was Sarah uninhibited about talking openly, but she was witty and funny and put me at ease. I have no doubt that she suffered at one point. I am certain that she experienced the same hideous side effects, feared a case of pneumonia as a death sentence, and gutted her way through the chemo and radiation like everyone else. Her humor is not a mask for the path she took, but rather a way to keep you out of your own pit of despair. I am pretty sure her story has its dark parts, and I'm grateful that she doesn't ask me to relive them with her.
For those of us who lack humor or perspective, survivors like Sarah make surviving Cancer a very real possibility. The fear of who I might be after all these toxic concoctions and laser beams is very real. I wonder daily how all this chemical poison is going to affect my nervous system, my sense of humor or my physical abilities. Will I always have a bad memory? Will I be slower with a snappy comeback at parties? Will I need to take the shortbus to do my grocery shopping? Sarah provides the very real possibility that those of us still in treatment are not doomed. There's a chance that we might all come out of this not only alive, but witty and funny as well. I am grateful that UCSF recognizes the importance of peer support even if cancer patients don't until it walks in and offers to bring you lunch.
Who knows? Maybe when all this over, I'll be the lunch lady at my old job offering a squeeze of my silicone implant......or not. Either way, I'll be happy to have the option and grateful to those who do that job.
"Can I get you anything? Sandwich? A blanket? A martini? Dirty magazine?"
She's got a quick wit.
When my friends flew all the way from the eastern seaboard to take me to chemo, they got to meet Sarah. We were all wearing our "Save Second Base" T-shirts that Polly brought and Sarah got a huge kick out of them. Thus sparked the conversation about breast reconstruction and the like.
"Oh, I didn't bother with that," offered Sarah. "When you go that route, you're kind of stuck with what they give you. I prefer to be more flexible, so I just go with the adjustables."
"The adjustables?" I inquired.
"Yeah. Depending on how I'm feeling, I can choose to be an A or a double D!"
Now, all three of us are staring at her chest. She appeared to have two equal, A-cup sized bumps under her sweater.
"What are they?" I asked.
"Go ahead, have a squeeze," She retorted.
I was caught between a rock and a hard place. If you knew my friend Polly, you would know that the look on her face was the exact look of "Go ahead, I dare you. If you don't grab this woman's fake breasts, I'm going to be very disappointed in you." Meanwhile, Edith was giving me the eyebrows up version that said, "After all, we came all this way....."
So there I was, in the infusion center, feeling up the lunch lady.
They were like hollofil, the stuff they use to put in sleeping bags and ski gloves. Sarah explained that she stuffed her bra with the stuff and it was great. Easy for her. She had a double mastectomy. I had a left only. There was no way that I was going to get hollofil to look like the right sided ski jump I had going on. She went on to say that there were all sorts of other options such as silicone prosthetics. She said that they were a little spendier but they looked a little more "life-like." She also referred me to the gift shop on the first floor where they sell them.
A week later, I had to make two trips to San Francisco. My counts had dropped and I needed an injection of a drug that would stimulate my blood cell production and keep my immune system alive. I drove down by myself. While I was there, I spent some time with the gift shop ladies who proceeded to explain all the possibilities of breast prosthetic options. Before i knew it, I was in a dressing room trying on bras and silicone implants. I was amazed at how close to real the implant looked.
Now, I'm not one of those girls whose femininity is all tied up in the size and shape of her bust. I'm perfectly content being small chested and have no qualms about lopping off the right side to match the left. However, that requires major surgery. I'm not in a place to go there right now. However, all of my shirts fit just a little funky. They hang sideways, so my neckline on all of my shirts looks like I put my shirt on the wrong way. It's distracting and when people figure out why my shirt looks so screwy, they get a pitiful look on their face. It's annoying. I decided that with Christmas and New Year's approaching, i was probably going to want to wear something pretty and strapless and it would look really dumb hanging off one side. I got the implant.
Ironically, insurance companies are supposed to cover this as a prosthetic. Your doctor can write you a prescription for a breast prosthesis and the insurance company will supposedly reimburse you, unless they scream that you got it "out-of-network" which means they're not going to pay for the nice ones. They'll send you down to the Breast Bargain Basement, their "in-network" breast prosthetic source. In other words, if you buy a used one, insurance will cover it. Insurance companies are weasels. They try to get out of everything.
Anyway, the next day, I came back and told Sarah about my experience. She was moved and excited because she felt she had made a difference. I told her if she really wanted to feel like she was making a difference, she could bring me a grilled cheese sandwich with turkey and tomato....
Weeks later, I got approached by Sarah and the media folks of UCSF. They wanted to interview me about Sarah and what she brings to the infusion center. Of course, I was honored to say yes and happy they would ask me. Seemed like there weren't a lot of patients who had the same sarcasm and gallows humor as Sarah and I had. We were two peas in a pod.
I was suddenly surrounded by people who thought it was so great that I would be interviewed and what a big deal it was. Of course, I knew that Sarah's humor and presence in the infusion center was important for patients and nurses because she is a seasoned resource. She's been through all the hell that breast cancer treatment offers and she's come out on the other side grateful for her life and an opportunity to make a difference in someone else's. Certainly, I probably wouldn't call the Peer Support line on my own but when the Peer Support program comes to you, it's nice to meet a woman who not only will offer you guidance but let you feel her up in the process.
Breast cancer has a strange stigma. Not everyone talks about it because women feel differently about their breasts. Some women are deeply affected by the loss of their breasts as a loss of their femininity or their identity. I don't miss my left breast but I realized that I do miss filling out my shirt in a semi-normal way. I found that getting information from other people about breast stuff was seemingly uncomfortable for people to talk about. Spark up a conversation about breast reconstruction and everybody thinks you want to be a stripper. I was very grateful that not only was Sarah uninhibited about talking openly, but she was witty and funny and put me at ease. I have no doubt that she suffered at one point. I am certain that she experienced the same hideous side effects, feared a case of pneumonia as a death sentence, and gutted her way through the chemo and radiation like everyone else. Her humor is not a mask for the path she took, but rather a way to keep you out of your own pit of despair. I am pretty sure her story has its dark parts, and I'm grateful that she doesn't ask me to relive them with her.
For those of us who lack humor or perspective, survivors like Sarah make surviving Cancer a very real possibility. The fear of who I might be after all these toxic concoctions and laser beams is very real. I wonder daily how all this chemical poison is going to affect my nervous system, my sense of humor or my physical abilities. Will I always have a bad memory? Will I be slower with a snappy comeback at parties? Will I need to take the shortbus to do my grocery shopping? Sarah provides the very real possibility that those of us still in treatment are not doomed. There's a chance that we might all come out of this not only alive, but witty and funny as well. I am grateful that UCSF recognizes the importance of peer support even if cancer patients don't until it walks in and offers to bring you lunch.
Who knows? Maybe when all this over, I'll be the lunch lady at my old job offering a squeeze of my silicone implant......or not. Either way, I'll be happy to have the option and grateful to those who do that job.
Thursday, January 12, 2012
The Pity Party of 2011
"The past is history. The future's a mystery. Today is a gift, which is why we call it the present." ~ Babtunde Olatunji
It all started out with a hip replacement. I feel like I've lived a lifetime since then. 2011 was riddled with drama. So glad it is over. I look back and think about how I agonized over my hip replacement, my daughter's soccer future and my future as a nurse. Now, I contemplate cancer treatments, side effects and clinical trials. Perspective ain't just a river in Egypt....er, something like that.
One year ago today, I remember it dawned on me that they were going to saw off the end of my femur to fix my hip. I remember thinking, wait a minute, my femur isn't the problem....but that's how you fix a hip and the sacrifice you make. Now that I am pain-free and able to put my socks and pants on without interesting acrobatics, it seems trivial, but days before my surgery, I remember obsessing about it. "Back then," I was also eating sushi, drinking lemontinis and buying hair products. Oh, the difference a year makes! Now I'm blending vegetables, drinking kombucha tea, and watching my eyelashes fall out.
My hip replacement was a success. No blood clots. No sepsis and no adverse outcome. I did what my doctor and my physical therapist told me to do and spent countless hours stretching and doing my figure-4 exercises for what seemed like forever. It took 6 months to really feel like my hip was good and stable. I am thankful that it is, but it was a long haul in the first half of 2011
In the middle of a hip replacement, Stella and Zoe tried out and secured their spots on a competitive club soccer team. We were so excited to work with her amazing coach for another season. So much so, that I agreed to be Zoe's team's Manager. We were poised and ready for another banner year of soccer with Coach AJ ...until the soccer club fired him. From there, our entire soccer year unraveled. I resigned my manager position, we pulled Zoe from the club and Stella, at the tender age of 9, made some very grown up choices between her team and her self-esteem. It was painful to watch. Zoe's season was salvaged when she returned to the team she played with last year, which turned out to make her year super fun. Stella stood on the sidelines and supported her sister. Meanwhile, I assisted Zoe's coach to keep myself from going postal on the entire Northern California competitive soccer system. Other than our experiences with Zoe's team, I was very disappointed with Northern California Soccer. Clearly, I'm not the only one because things are changing in big ways for next year, but the whole thing left a bad taste.
After the hip replacement and the soccer nightmare of a lifetime, I went back to work, which turned out to be quite challenging. My department was undergoing major changes and there were a lot of process issues that were needing upper-level attention. This created some inter-departmental strife and difficult days for us worker bees. You know you are having low job satisfaction when you look at the bright side of cancer as not having to go to work for awhile. Work was definitely less fun.
We short-saled a house in early 2011, which decimated our credit rating. Marek had hernia surgery and Stella broke her wrist right about the time we were going to salvage her soccer season. And then I got Cancer.
Thousands of healthcare dollars later, it's safe to say that 2011 was a mess. I look back on all of it and wonder how we are all still standing. Certainly, our new involvement with the folks at West Coast Martial Arts and the fun we had with Zoe's soccer team had a lot to do with our survival. The gift of friendship, the kindness of acquaintances and the outpouring of community support has clearly kept me from jumping off of any bridges. Another life-deafening epiphane I had last year, is I used to think of myself as somewhat insignificant unless I was overachieving. Now I realize that just being present for another is reason alone for being here. I don't have to be super nurse, super wife, or super mom, world class skier or class V kayaker, nor do I need two breasts or a full head of hair to feel whole. This is a major mid-life revelation for an only child trying twice as hard to be half as good, which means that 2011 was not for nothing. Heck, it took the events of 2011 what 44 years of my life did not accomplish. I am resolved to cashing in on 2011's blood, sweat, and tears (and bullet-hard bowel movements). I will be turning all of 2011's bad karma into 2012's good fortune, preferably from the side of the pool in my front yard. 2011 had a purpose. It's purpose was to make 2012 look really great. So, come for a swim. Let me fix you a veggie smoothie, a glass of Kombucha or some crispy Kale. 2012 is for living it up. It's time to be present and trust me, today is a gift.
It all started out with a hip replacement. I feel like I've lived a lifetime since then. 2011 was riddled with drama. So glad it is over. I look back and think about how I agonized over my hip replacement, my daughter's soccer future and my future as a nurse. Now, I contemplate cancer treatments, side effects and clinical trials. Perspective ain't just a river in Egypt....er, something like that.
One year ago today, I remember it dawned on me that they were going to saw off the end of my femur to fix my hip. I remember thinking, wait a minute, my femur isn't the problem....but that's how you fix a hip and the sacrifice you make. Now that I am pain-free and able to put my socks and pants on without interesting acrobatics, it seems trivial, but days before my surgery, I remember obsessing about it. "Back then," I was also eating sushi, drinking lemontinis and buying hair products. Oh, the difference a year makes! Now I'm blending vegetables, drinking kombucha tea, and watching my eyelashes fall out.
My hip replacement was a success. No blood clots. No sepsis and no adverse outcome. I did what my doctor and my physical therapist told me to do and spent countless hours stretching and doing my figure-4 exercises for what seemed like forever. It took 6 months to really feel like my hip was good and stable. I am thankful that it is, but it was a long haul in the first half of 2011
In the middle of a hip replacement, Stella and Zoe tried out and secured their spots on a competitive club soccer team. We were so excited to work with her amazing coach for another season. So much so, that I agreed to be Zoe's team's Manager. We were poised and ready for another banner year of soccer with Coach AJ ...until the soccer club fired him. From there, our entire soccer year unraveled. I resigned my manager position, we pulled Zoe from the club and Stella, at the tender age of 9, made some very grown up choices between her team and her self-esteem. It was painful to watch. Zoe's season was salvaged when she returned to the team she played with last year, which turned out to make her year super fun. Stella stood on the sidelines and supported her sister. Meanwhile, I assisted Zoe's coach to keep myself from going postal on the entire Northern California competitive soccer system. Other than our experiences with Zoe's team, I was very disappointed with Northern California Soccer. Clearly, I'm not the only one because things are changing in big ways for next year, but the whole thing left a bad taste.
After the hip replacement and the soccer nightmare of a lifetime, I went back to work, which turned out to be quite challenging. My department was undergoing major changes and there were a lot of process issues that were needing upper-level attention. This created some inter-departmental strife and difficult days for us worker bees. You know you are having low job satisfaction when you look at the bright side of cancer as not having to go to work for awhile. Work was definitely less fun.
We short-saled a house in early 2011, which decimated our credit rating. Marek had hernia surgery and Stella broke her wrist right about the time we were going to salvage her soccer season. And then I got Cancer.
Thousands of healthcare dollars later, it's safe to say that 2011 was a mess. I look back on all of it and wonder how we are all still standing. Certainly, our new involvement with the folks at West Coast Martial Arts and the fun we had with Zoe's soccer team had a lot to do with our survival. The gift of friendship, the kindness of acquaintances and the outpouring of community support has clearly kept me from jumping off of any bridges. Another life-deafening epiphane I had last year, is I used to think of myself as somewhat insignificant unless I was overachieving. Now I realize that just being present for another is reason alone for being here. I don't have to be super nurse, super wife, or super mom, world class skier or class V kayaker, nor do I need two breasts or a full head of hair to feel whole. This is a major mid-life revelation for an only child trying twice as hard to be half as good, which means that 2011 was not for nothing. Heck, it took the events of 2011 what 44 years of my life did not accomplish. I am resolved to cashing in on 2011's blood, sweat, and tears (and bullet-hard bowel movements). I will be turning all of 2011's bad karma into 2012's good fortune, preferably from the side of the pool in my front yard. 2011 had a purpose. It's purpose was to make 2012 look really great. So, come for a swim. Let me fix you a veggie smoothie, a glass of Kombucha or some crispy Kale. 2012 is for living it up. It's time to be present and trust me, today is a gift.
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