Monday, March 29, 2010
Friday, March 26, 2010
Thanks to Rob of 360i for sending me the link
Tuesday, March 23, 2010
I take a lot of pills, not as many as I used to when I was going through treatment, but still, more than most. Most of them are vitamins, a full multi vitamin, b complex vitamin, vitamin b-6, vitamin d (keeps me from being tired not enough sun in Northern Michigan apparently for most) etc, some are prescribed, like the anti anxiety pill I take, got those from my doc when I was told my course of treatment. I remember thinking how the fuck am I going to get through all this shit? I called my doc and I remember it like it was yesterday, told her I thought I needed some anti anxiety, sounded like she was eating lunch, she was very calm, I think I felt like I was about to jump out of my skin. I recall telling her what I was going to have to do 4 rounds of adrymicin/cytoxan, 12 rounds of taxol, with herceptin, then herceptin for the rest of the year. Yeah, I can see why you would be anxious is what she said or something like it. I remember babbling something like yeah I don't take meds so you should give me the lowest dose possible. I can just imagine what my chart notes look like for that day.
I also take synthroid for hypothyroidism. That pill starts my day. Have to take it on an empty stomach. Then I wait a half hour to an hour to eat. Wonder why that is. Don't know. I should ask my doc next month, going to an appointment for a med check.
I take tamoxifen, a cancer fighting pill. I take that until 2013. Can't wait to be done with that one, once that is done I will be officially done with treatment. That will be a sweet day. Yeah you are thinking it is just a pill, not as bad as chemo or radiation, but still, it is treating my cancer. It is another reminder, and the hot flashes totally suck, but as far as side effects go, they are not too bad.
The other pill I take is an anti depressant. I have to take that with dinner. I took it once without food, ugh. Ever have food poisoning? That was what it was like, and I was house sitting. that was great. Being in an unfamilar environment totally nauseous. I should have started the anti depressant earlier than I did. I have been pretty positive throughout treatment and survivorship, but I realize that I cannot do it alone, that is why I asked my doc for the anti depressant. That was probably one of the hardest things I did. I wasn't feeling like myself and I knew I was in a bad place and I didn't want to keep going down that road.
Then after a while I tried to get off the anti depressants, with doctors approval of course.
That was a mistake.
Anti depressants are hard to get off of, bad withdrawal effects. Not good if you are in radio. I recall calling the docs office talked to the office manager Carla or Nurse Debbie. Yah I think I am going to stay on the meds. I feel like I am either going to start crying or punch someone in the face. She asked me if I wanted to talk to the doctor. I said no. Just put it in my chart. Why? I thought, so she could tell me that was a good idea? I can be a pain in the ass sometimes.
I follow my schedule regularly. Tonight I will take my vitamins and anti anxiety before bed, anti anxiety will help me sleep.
Tomorrow I wake up and take my synthroid, and start the schedule all over again.
Mel is the producer/co~host of The Vic McCarty Show. Listen live Monday-Friday 10am-noon eastern standard time on wmktthetalkstation.com podcast of the show is also available
Check out my show The Cancer Warrior on Empoweradio.com available on demand now and also available on itunes
Thursday, March 18, 2010
Another guest blogger
I got a lot of advice when I was first diagnosed with cancer. One suggestion I heard often was to let things go and take care of myself. My job, my projects, my chores would wait.
But, I wondered, what about my children? They will not or cannot wait. This is their childhood. They need me now. How is that supposed to work?
Even before my treatment began, the conundrum of simultaneously letting go and parenting came up. A few days before I started chemotherapy, my children came down with the swine flu. At the advice of an oncological social worker, we had not yet told them about my diagnosis or upcoming treatment. We were waiting until the last possible moment so as not to make them anxious. Then my youngest contracted a fever and what the pediatrician confirmed to be unmistakable H1N1 symptoms. We could no longer wait to sit them down and have The Talk. We explained my diagnosis and why I was going to quarantine myself at somebody else’s house. This was not an easy conversation and we all shed many tears. A shadow hung over our discussion. Almost exactly two years earlier, my step-brother, their uncle, had died from cancer, so the disease was very real and scary to them. The worst part of this conversation was that I did not get to hug them after we broke the news. It was the beginning of me having to deny my strongest maternal instincts in the interest of my own wellbeing and survival.
One by one, the three children got the virus. I stayed at an acquaintance’s house for the next ten days. A kind family with a spare room had heard of our difficult situation and offered to take me in. We had only lived here for four months prior to my diagnosis, so we had not yet made close friends. A high school chum, whom I hadn’t seen in twenty years, was moved by our situation and with only a couple of days’ notice, she flew out to help. She stayed with me and this wonderful family, accompanying me at my first chemo and my port placement surgery. Amazingly, this motley bunch of virtual strangers-turned-friends managed to support me with love and compassion as I started my cancer treatment. This wild journey, it seemed, would not just involve chaos and heartbreak; it would be cushioned by miraculous generosity and love.
When I returned home, my son, who was two years old, clung to me. His insecurity seemed amplified by my strange reemergence. In my ten-day absence, I had already been transformed. My usual peppy energy level had sunk notably and my appearance had altered. Although my doctor had told me it would take several weeks for my hair to fall out, my sensitivity to the drugs was high. My hair began to fall out after one week. After a clump came out in my brush and made me cry, my husband came by the house where I was staying to shear my curly locks.
My son wanted to be with me and I with him. I felt guilty for my limitations. I had to figure out how to parent from my bed. We read together and we talked. We developed a repertoire of games I can play with my low energy while resting. He has become so accustomed to them after my four months of treatment that on the days when I have been up and about, he sometimes becomes indignant: “But I want to go snuggle in your bed!”
Even when I am weakened, nauseous, and fatigued, I cannot stop being my children’s mother. I cannot stop loving them, caring about them, fretting about them, working to support their emerging and precious selves. But, as I said, my instincts are often denied. I really have had to let so many things go. I can no longer look after my daydreamy eldest’s organization of her schoolwork. I have consulted with her teacher, and we are lowering our original goals on that issue for this year and are focusing on her learning. She may not get every assignment turned in but she is engaging in and understanding the curriculum. I have given up trying to reorganize my middle child’s bureau drawers. I can’t participate or volunteer at the kids’ school. Even if I had the energy, it is a virus swamp and no place for the immunocompromised. The things I normally manage, that are part of my normal rhythm as a mother, have to fall by the wayside.
Although my parenting has been restricted, I can still check in with my children. Thankfully, they tell me what is on their mind. It pains me that I can’t engage with their concerns and fully protect them from the horror of what is happening to me. They see me and know that I suffer. I fantasize about having a superpower that would allow me to freeze time for them so that I could go off and get better without them having to witness the pain of treatment. In this daydream, I would return as basically my same self and we could resume our family life without this nightmarish interruption.
Early on, we bought them a book about a mother with cancer, a story told at a level that even my youngest could understand. He asked us to read it repeatedly for the first couple of months of my treatment. Two months later, when the book had lost its hold on him, he turned to me with a serious look on his face and said, almost accusing, “In the book, Sammy’s mother gets better faster than you.” My heart broke for what felt like the millionth time. A ten-minute story is so much easier to sit through than a year and a half of treatment. I wish, like him, we could just turn the page and make the time pass.
My middle child, the one who has been told repeatedly in her seven years of life that she looks just like me, expressed the most distress about my hair loss. The changes in my appearance that threatened my own identity also seemed to threaten hers. She did not want me to show my bald head in front of her friends. She urged me to get a wig. When she learned about my surgery, she asked if I would look like a man without breasts. My eldest, who is almost ten, confided her fears about her own body: she was afraid to get breasts because they might get cancer too.
But even snuggling and talking have their limits. The treatment makes me hypersensitive at times, making noise or multiple simultaneous conversations difficult to tolerate. My children are learning to have more slow and measured conversations with me, but, of course, this is not natural. The cognitive impairment of chemotherapy makes me an unreliable listener. “Mommy, don’t you remember?” is a phrase I have heard that more in the last four months than in my prior ten years of motherhood, as I, in defiance of my usual acute memory, once again forget a friend’s name, a birthday party, or a project that somebody wanted to do.
An undeniable anxiety pervades our household, bringing our reactivity up in a multitude of circumstances. Our capacity is down, so my husband and I work to push things back to make space for the kids’ needs and concerns. We worked out with the girls’ school that they do not receive homework one night a week while we attend a family support group. In general, we have abandoned some of our usual focus on their schoolwork. The vulnerability of our situation makes our emotions raw. When my son wandered off for ten minutes at the science museum, our imaginations could believe the worst-case scenario more vividly than we normally would. We know too well that the bad stuff in life is not just what happens to other people.
What, I often wonder, is my goal as I parent through this time? How am I to help the children make sense of this experience? The best I can come up with is that it is my obligation to listen and be as honest and hopeful as I can. I learned, in the twenty months my brother was fighting this disease, that there is always something to hope for no matter what course the cancer takes. With my brother, I started by hoping for a cure and ended with the wish, once it was inevitable, that his death be peaceful and that he leave this world feeling the power of the love he had created while he was in it.
So this is an opportunity to teach them, in a vivid way, the importance of love, generosity, and hope. I have marveled with them at the kindness of the people who took me in and cared for me when our family had its initial crisis. I try to help them see the weight that is lifted as people bring us meals or visit and help with chores. I hope that, with our guidance, they can see how these acts of lovingkindness are fundamental to a community and that they will be eager to give to others when the opportunity arises. I hope they see that my appearance can change, but the love that I have for them never does. My love for them endures even in these circumstances, even when I am being beaten down by chemo side effects and the drugs that are meant to alleviate them. I hope that they learn about the importance of us sticking together as a family, as they watch their dad push himself to the limits to keep everyone going. I hope they learn how to live life with joy, because only if you have been in a difficult place filled with grief do you learn the gift that is health and normalcy to the point where it can bring you true contentment and happiness.
Lani Horn is a wife, mother of three, and a professor. She was diagnosed with breast cancer in October 2009. You can read her blog at chemobabe.com.
Mel is the producer/co~host of The Vic McCarty Show. Listen live Monday-Friday 10am eastern time on wmktthetalkstation.com.
Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and available on Itunes.
Saturday, March 13, 2010
I never really had a scar until I had my lumpectomy. Before that I only had one tiny scar on my knee. Got that from our dog Tiger, a german shepard mix, who decided, when I was in junior high or high school, to chase something and he dragged me down the the ground. Barely noticeable to me.
Now including I have 3 scars, one on my knee, one from my lumpectomy and a scar from the infusion port.
It took me a while to get used to seeing the big lumpectomy scar. I am glad my breast was able to be saved, and I can never wear a shirt and show off my cleavage (well I guess I could but that scar would turn heads more than my cleavage ever would.)
When I first got home from surgery I remember looking at my scar, hating it, glad that the cancer was gone, but hating the fact that I had a constant reminder of surgery, of cancer, of the fact that life was going to be different from here on out. It took me a long time to get used to that scar.
I had everything happen to me pretty quickly, diagnosis to surgery to chemo was less than two months, Sept 18th-diagnosis, Oct 9-Surgery, November 12 chemo. Somewhere between lumpectomy surgery and chemo I had surgery for to put the port in. I was glad that I had that put in because chemo chews up your veins, but I hated seeing that fucking thing every day. It looked like a little bottlecap underneath my skin. I couldn't anything that I really loved to do (hockey, skiing etc) because you could get seriously injured if you hit that thing. Even when I was exercising I would move a certain way and that would hurt. I totally recommend getting a port, but I was so fucking grateful when it was removed.
My surgeon wanted to know if I wanted to keep it. Some people do as a reminder. No way. Thanks for the memories doc, but throw that god damn thing away. I have enough memories of all the shit I went through.
My lumpectomy scar is perfect for that.
Some of where the cancer was cut out is numb and will never get feeling back. Some of the feeling has come back. That is normal, my surgeon says. Like I said, glad I got to keep my breast. I remember thinking waayy back when I first met my surgeon he asked if I wanted a full mastectomy on my right breast.
Holy shit,I thought, it was difficult enough to think about, that I have cancer, that I have to have surgery, wondering how the fuck am I going to pay for all this, now you are asking me if I want you to lop off a part of my body. Hell no. (Although I am pretty sure at the time I didn't say that but in the back of my mind that is what I was thinking)
I remember thinking after seeing that scar, that Doug would never think that I would ever be attractive again. Obviously that is and never was the case, but in my mind, during chemo, that god damn napalm they give you, caused my hair loss and my weight loss (when I thought I looked like a space alien) the times when I couldn't eat, when I was so fucking fatigued from cancer and then I couldn't sleep, when I forgot about those things for a moment, there would always be that scar.
Having that scar took a long time for me to get used to.
I know some people equate their scars to a badge of honor.
The scar is now just a part of me.
Mel is the producer/co~host of The Vic McCarty Show. Listen live Monday~Friday 10am-noon eastern time on wmktthetalkstation.com
Check out my podcast The Cancer Warrior on Empoweradio.com available on demand and also available on itunes.
Monday, March 8, 2010
Today I found out a friend of mine has cancer. He has been keeping it a secret for some time. I don't see him that much and all he said was that he was going in for some minor surgery. He didn't tell me, I heard it from a mutual friend.
It reminded me of when I was diagnosed. I wanted to keep it a secret at first, it was so hard to believe that it could happen to me. I had two jobs at the time so I told one boss, then the other, then most of my co~workers. Telling the story over and over again was so hard at the beginning. I actually told one of my supervisors to tell the other employees at my job. I couldn't keep telling the story over and over again. It was right after diagnosis, before any treatments or surgeries, and it was like cutting open a fresh wound every time I would say I have cancer.
I know my friend wants his privacy. I know its hard when its fresh and new. You never think it could happen to you. My friend is active, works out, and it is a total shock when you are diagnosed, when you hear those words.
I want to go to my friend and give him a hug, tell him I am here for him. Give him support and tell him I am here for him and introduce him to the cancer community that I am a part of.
But he hasn't told me.
I will respect his wishes and wait until he tells me.
I am used to being on his side of the fence. Being the fighter, ready for battle, taking on cancer, dealing with all the shit that comes with it. Not being on the other side of the fence.
Being on either side of the fence sucks.
Mel is the producer/co~host of The Vic McCarty Show. Listen live Monday~Friday 10am~Noon eastern standard time on wmktthetalkstation.com
Check out my podcast available on demand now on Empoweradio.com. Also available on Itunes
Thursday, March 4, 2010
Another Guest blog. Enjoy
My ( ex) hairdresser said the dreaded words. “ Well, you know. . this will only make you stronger! **wink,wink** “ My usual retort used to be “Really? I thought life was hard enough without a bout of cancer to toughen you up. “ But I didn’t have the energy that day. I just smiled and thought “Just cut my hair lady - this is the last time I’ll be in your chair for a solid year.” That was almost 3 years ago now and still I wonder what my children really thought of my cancer. We tried to keep life pretty normal, but we weren’t hiding anything either. They knew about the surgeries and chemotherapy etc. Yet, it is truly hard to tell how it impacted them until something else sneaks up. Like when my daughter’s boyfriend had to go to the ER for a twisted ankle. I assured her that her beloved was to be a.o.k and then it came out. “Yeah, like the time you went in for the lung biopsy and they collapsed your lung! Things happen to people Mom, things happen and they are not o.k.“
I’m going out on a limb here and give you a fat cliche. “It made our family stronger.“ Actually let me rephrase. Cancer didn’t make us stronger - the way we chose to support each other made us stronger. My kids and my husband got to see me in a different light. It gave me the chance to be vulnerable and them a chance to step up to the plate. I cried in front of them - I let my daughter stay in the hospital with me because she needed to. It was her way of dealing with the crisis. They had the chance to see me as a person and not just someone nagging about homework and curfews. Did they grow up faster because of it? Yes. But is that a bad thing? Isn’t it better for our kids to learn that life happens - it’s how you choose to deal with it that makes the difference?
Teen #2 came home from school the other day and told me about a girl who was very troubled, using drugs etc. and said “ I think she has a bad home life.“ That’s when Teen #1 stepped in to remind him “We had a bad home life for awhile too Brandon. When mom was sick we could have starting messing up- but we didn’t. It’s choice. She has the choice.”
It was a choice to share my experience with my family. I could have kept it all to myself pretending to be strong and shelter them from life, but in doing so I would have robbed them from their experience. This is an excerpt my daughter wrote for her a scholarship essay:
It’s an indescribable pain to watch your mother cry because she can’t breathe. It’s even worse when there isn’t a single thing to do to help her. Ultimately, I was just mad. Mad at the doctors, at the nurses, at the cruelty of the universe in general. But with all my anger came a renewal of the way I saw my mother. She was so strong and she had so much patience and clarity. That night, I saw her not only as my mother; I saw her as a wife, as a “Tough Girl,” and as a woman who, despite all of the terrible things she was enduring, was able to still have love in her heart for her daughter. My admiration for her grew in ways I wouldn’t even be able to describe. And after that night we spent in the hospital, she also became more than just my mom.
I felt so sad reading this - knowing she was hurting so bad inside . And in the next breathe, I was so grateful I let her see ‘me'. I realized my experience made her a better person and yes, we are ‘stronger’.
Founder of Inner Tough Girls