I had a Herceptin treatment today at the clinic and was surprised by how odd I felt being there with my hair back. It's only been three weeks since my last visit, but my hair now could pass for a chosen hairstyle and my PA, doctor and the nurses all commented on how it has grown back. But among the other patients I felt almost like an interloper - no longer such an obvious member of the cancer survivor club. Women will no longer stop me in the street, store, airport or sandwich shop and encourge me with their stories of survival - it is now my responsibility to watch for others to encourage. Unfortunately, as I was having these thoughts my husband called me to tell me of yet another woman we know who is bravely facing the breast cancer experience. Another card to send, another woman to keep in my prayers, and another survivor to celebrate with.
Having gone through the experience, I want to tell all those women who are worried about their hair loss that it's not that big a deal, there are so many more things to think about - and be thankful for - and, after all, it will grow back. But it's like telling a young woman planning her wedding to take the money and put a down payment on a house - once you've been there, it's easy to say, but not so much if you haven't yet had the experience.
Wednesday, August 27, 2008
Monday, August 25, 2008
Thoughts on Elizabeth Gilbert's Eat Love Pray
In June we took a trip to visit Charlie's parents, and his sister and her partner in Florida. It was the first time I had been away since my parents moved in with us in October 2006, so it was a much anticipated break as well as the opportunity to see my wonderful in-laws who had been so supportive - I really looked forward to those in-person hugs. We had a great visit and spent one day on Clearwater Beach doing nothing but reading and watching the surf. I read Eat Love Pray by Elizabeth Gilbert, which my friends had given me while I was in the hospital. I had a tough time getting into it, but once I got through the section on gluttony in Italy, I enjoyed the book which is subtitled "one woman's search for everything across Italy, India and Indonesia." I found two particular parts of the book quite interesting - the first provides a way of looking at our time here on earth in a new light and the second put into words what I couldn't about my approach to my appearance during the surgery and treatment phase of my breast cancer journey.
The first is a conversation between the author and a medicine man in Bali about the difference between heaven and hell. The medicine man says "you can tell the difference because for heaven you go up, through seven happy places and hell you go down through seven sad places." The author responds with "You might as well spend your life going upward through the happy places, since heaven and hell -- the destinations -- are the same thing anyway?" and the medicine man answers "Same in the end, so better to be happy on the journey." That just so hit home for me - not that I'm looking to change my basic protestant beliefs, but really - why not go through happy instead of sad???
The second quote is from a woman named Armenia who runs Novica who as an explanation of what it means to be a Brazilian woman says "...Even in the worst tragedies and crisis, there's no reason to add to everyone's misery by looking miserable yourself. This is why I always work makeup and jewelry into the jungle...Just enough to show that I still had my self-respect." I had no idea why I was so determined to always look the best I could, always with eyeliner, lipstick and blush - always dressed well to go to the doctors or the clinic, but as soon as I read that passage - I knew I agreed with her - it's totally a matter of self-respect - a very important trait to hold on to during the battle with cancer!
Well Hello There
It's been 2 months since my last post and I've really got no good reason other than I wanted to take a little break from cancer for the summer. Although I could take a break from blogging and talking about cancer, I certainly couldn't take a break from my treatment, which continued and moved forward over the last few months. I'll be outlining those in the next few posts.
But mostly I spent this summer worrying about someone elses health - my husband, Charlie. This spring, he was diagnosed with Atrial Fibrillation which is when the heart's two upper chambers (the atria) beat irregularly or out of coordination with the two lower chambers (the ventricles) of the heart, causing high blood pressure and increased risk of stroke and other heart problems. In early July he had electrical cardioversion which is the resetting of the rythm of the heart with an electrical shock delivered to the heart through paddles or patches placed on the chest. The shock stops the heart's electrical activity for a split second. When the heart begins again, the hope is that it resumes its normal rhythm. The procedure is performed under anesthesia. And, finally, during the search for a cause for the A-Fib, it was discovered he has moderate obstructive sleep apnea which is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses during sleep. He is awaiting a device that will help him keep his air passages open during sleep, and hopefully lower his blood pressure and cure a whole list of Apnea symptoms.
But mostly I spent this summer worrying about someone elses health - my husband, Charlie. This spring, he was diagnosed with Atrial Fibrillation which is when the heart's two upper chambers (the atria) beat irregularly or out of coordination with the two lower chambers (the ventricles) of the heart, causing high blood pressure and increased risk of stroke and other heart problems. In early July he had electrical cardioversion which is the resetting of the rythm of the heart with an electrical shock delivered to the heart through paddles or patches placed on the chest. The shock stops the heart's electrical activity for a split second. When the heart begins again, the hope is that it resumes its normal rhythm. The procedure is performed under anesthesia. And, finally, during the search for a cause for the A-Fib, it was discovered he has moderate obstructive sleep apnea which is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses during sleep. He is awaiting a device that will help him keep his air passages open during sleep, and hopefully lower his blood pressure and cure a whole list of Apnea symptoms.
Friday, June 20, 2008
Treatment Attitude
Wow - I can't believe it's been almost a month since I last posted. No, I haven't been sick and everything is fine. Charlie and I went to Clearwater, Florida for some in person hugs with his family and a little R&R. The day after we got back was my dad's 90th birthday and then I started 2 on-line classes, so I've just been making up for some lost time. I did, after all, spend much of the last 6 months sitting on my butt getting nothing done.
This week when I went for my Herceptin treatment (aka targetted therapy) there was a woman sitting across from me in the pod and she was having a difficult time. Now here's the thing about these pods - they are just small enough so you can't really have a private conversation and just big enough that you can't really talk to someone in another chair without being disruptive. So, I of course, overheard her talking with the nurse about her hair beginning to fall out. She had shoulder length hair and was very upset. Her husband had left for a while to get something to eat and I could see she was emotional. I didn't want to drag my IV pole across the room, so I waited until I was finished to go and speak with her. The nurse had told her to cut her hair short because that would lessen the impact of the loss, and I told her that was a great way to go - we all remember my buzz cut. But I also told her that although it is upsetting when it first happens, it really becomes not such a big deal after the first few days. She looked somewhat releived and agreed that cutting her hair was probably a good idea.
Ok, so where I'm going with this story? I once again have to thank my mother for my attitude. One of the most important things she ever taught me was not to worry about things I couldn't change. Her exact words are "it's no use getting yourself all upset over something you can't do anything about." And she is right. You have cancer, you get chemotherapy and your hair falls out. Nothing you can do about it. And it's SO much more important to focus on the fact that the chemotherapy is working to save your life. The trick to getting through treatment is perspective. So what if you get bloated from steriods, your hair falls out and you feel sick to your stomach. It will be over in a few months and odds are your life will continue for years - isn't that what's most important?
This week when I went for my Herceptin treatment (aka targetted therapy) there was a woman sitting across from me in the pod and she was having a difficult time. Now here's the thing about these pods - they are just small enough so you can't really have a private conversation and just big enough that you can't really talk to someone in another chair without being disruptive. So, I of course, overheard her talking with the nurse about her hair beginning to fall out. She had shoulder length hair and was very upset. Her husband had left for a while to get something to eat and I could see she was emotional. I didn't want to drag my IV pole across the room, so I waited until I was finished to go and speak with her. The nurse had told her to cut her hair short because that would lessen the impact of the loss, and I told her that was a great way to go - we all remember my buzz cut. But I also told her that although it is upsetting when it first happens, it really becomes not such a big deal after the first few days. She looked somewhat releived and agreed that cutting her hair was probably a good idea.
Ok, so where I'm going with this story? I once again have to thank my mother for my attitude. One of the most important things she ever taught me was not to worry about things I couldn't change. Her exact words are "it's no use getting yourself all upset over something you can't do anything about." And she is right. You have cancer, you get chemotherapy and your hair falls out. Nothing you can do about it. And it's SO much more important to focus on the fact that the chemotherapy is working to save your life. The trick to getting through treatment is perspective. So what if you get bloated from steriods, your hair falls out and you feel sick to your stomach. It will be over in a few months and odds are your life will continue for years - isn't that what's most important?
Tuesday, May 27, 2008
Life Changes
Everyone I've met that has had cancer has acknowledged that it's a life changing experience, and for each of those people, their lives changed in different ways. There are big ways and small ways my life will forever be different. There is, of course, the most obvious change in the fact that I lost a breast this year, but there are also many little things that I'm sure will change. For example, today, for the first time in my life I bought a sunscreen with a 30 SPF - I don't think I've ever worn anything over 15 and even that very sporadically (of course, I also bought sunless tanning spray). I realized with that small purchase my approach to life has changed.
Breast cancer can be environmental or genetic and with the results of my genetic tests being negative, I have to think that my cancer was mainly environmental and wonder what role my lifestyle choices played. I'm not beating myself up about it, but I am looking for change as I move forward. I know that the biggest change I have to make is a life-long commitment to 30 minutes of exercise a day. Until I wound up in the hospital I had been doing quite well with that, but haven't had the energy since then, although now 2 weeks after my last chemotherapy I'm beginning to bypass the afternoon nap and hope to get back to some form of daily exercise. The other, and for anyone who knows me will know this one is truly a big life change, is a change in alcohol consumption. Study after study point to more than 1 drink a day as a breast cancer cause. Well, I’ve certainly consumed enough alcohol to equal one drink a day for the next 200 years! As you can imagine, I haven’t had anything to drink since early January and without making a pledge to be the designated driver for the rest of my life, I have spent quite a bit of time thinking about how I will change my approach to cocktail hour. I have plenty of time to think about this, as all the literature on Herceptin Treatment discourages alcohol use during treatment and I’ll be receiving Herceptin for another 9 to 10 months.
And then there is the spiritual side. For many years now I’ve been telling my husband we need to do something about our lives – we’re weren’t actively living our lives, we were going from life event to life event and I’ve felt that something was missing. I’ve got my summer reading lined up; starting off with Jon Kabat-Zinn’s Mindfulness for Beginners and A New Earth by Eckhart Tolle and hope to come to a more enlightened understanding of the big and small pictures and what the future may hold for me now that I’ve had this life changing experience.
Breast cancer can be environmental or genetic and with the results of my genetic tests being negative, I have to think that my cancer was mainly environmental and wonder what role my lifestyle choices played. I'm not beating myself up about it, but I am looking for change as I move forward. I know that the biggest change I have to make is a life-long commitment to 30 minutes of exercise a day. Until I wound up in the hospital I had been doing quite well with that, but haven't had the energy since then, although now 2 weeks after my last chemotherapy I'm beginning to bypass the afternoon nap and hope to get back to some form of daily exercise. The other, and for anyone who knows me will know this one is truly a big life change, is a change in alcohol consumption. Study after study point to more than 1 drink a day as a breast cancer cause. Well, I’ve certainly consumed enough alcohol to equal one drink a day for the next 200 years! As you can imagine, I haven’t had anything to drink since early January and without making a pledge to be the designated driver for the rest of my life, I have spent quite a bit of time thinking about how I will change my approach to cocktail hour. I have plenty of time to think about this, as all the literature on Herceptin Treatment discourages alcohol use during treatment and I’ll be receiving Herceptin for another 9 to 10 months.
And then there is the spiritual side. For many years now I’ve been telling my husband we need to do something about our lives – we’re weren’t actively living our lives, we were going from life event to life event and I’ve felt that something was missing. I’ve got my summer reading lined up; starting off with Jon Kabat-Zinn’s Mindfulness for Beginners and A New Earth by Eckhart Tolle and hope to come to a more enlightened understanding of the big and small pictures and what the future may hold for me now that I’ve had this life changing experience.
Friday, May 23, 2008
She's Radioactive
This week, I've been busy with a surgeon follow-up, a Herceptin Treatment and a MUGA Scan. I saw my surgeon on Monday afternoon and he was pleased with my progress and range of movement. Although I do still have quite a bit of numbness in my arm, chest and back, it is lessening and not unexpected from lymph node removal.
On Wednesday, I had my first Herceptin treatment since "the rash" and in all honesty, I was a tiny bit apprehensive, but nothing happened and the rash continues to be a mystery and luckily, just a memory. As I was scheduled for a MUGA Scan on Thursday morning, the nurse left my port accessed overnight, which took the IV anxiety out of the MUGA appointment.
Ok, you are asking yourself, what the heck is a MUGA. Here is more info than you
wanted and this photo is of me having my MUGA! The MUGA scan (MUltiple Gated Acquisition scan) is a noninvasive test that assess the health of the heart's major pumping chamber (the left ventricle). The process is really very simple, but a little odd. They take a vial of blood and then go away for 25 mintues while they make your blood radioactive, then they come back with a white box with a big "Caution Radioactive" label on it, take a vial encased in metal out and then reinject the radioactive blood into the patient. The next part is easy - you don't even have to challenge the fashion police in a hospital johnny - just lie on the table, and the machine takes 16 pictures for each heart beat for 7 minutes. I had a MUGA back in March prior to beginning treatment and will have one every 3 months for the duration of my Herceptin treatment, as heart damage is a reversible side effect of Herceptin.
So, one week past my last chemotherapy treatment I am starting to feel much better. As expected, I did have a difficult weekend, and this one was a bit more emotionally difficult than in the past. I don't know if it was the change in my treatment drugs that Dr. Muss made, or the fact that it was wonderful weather and I was feeling a bit sorry for myself, but I'm sure I made my husband crazy on Sunday with a little more than my share of whining. Other than that, I did have a little more than usual nausea, but nothing too bad. I am beginning to feel better, and by all accounts will feel more and more like my old self each day now that the toxins are leaving my body for good.
On Wednesday, I had my first Herceptin treatment since "the rash" and in all honesty, I was a tiny bit apprehensive, but nothing happened and the rash continues to be a mystery and luckily, just a memory. As I was scheduled for a MUGA Scan on Thursday morning, the nurse left my port accessed overnight, which took the IV anxiety out of the MUGA appointment.
Ok, you are asking yourself, what the heck is a MUGA. Here is more info than you
wanted and this photo is of me having my MUGA! The MUGA scan (MUltiple Gated Acquisition scan) is a noninvasive test that assess the health of the heart's major pumping chamber (the left ventricle). The process is really very simple, but a little odd. They take a vial of blood and then go away for 25 mintues while they make your blood radioactive, then they come back with a white box with a big "Caution Radioactive" label on it, take a vial encased in metal out and then reinject the radioactive blood into the patient. The next part is easy - you don't even have to challenge the fashion police in a hospital johnny - just lie on the table, and the machine takes 16 pictures for each heart beat for 7 minutes. I had a MUGA back in March prior to beginning treatment and will have one every 3 months for the duration of my Herceptin treatment, as heart damage is a reversible side effect of Herceptin.So, one week past my last chemotherapy treatment I am starting to feel much better. As expected, I did have a difficult weekend, and this one was a bit more emotionally difficult than in the past. I don't know if it was the change in my treatment drugs that Dr. Muss made, or the fact that it was wonderful weather and I was feeling a bit sorry for myself, but I'm sure I made my husband crazy on Sunday with a little more than my share of whining. Other than that, I did have a little more than usual nausea, but nothing too bad. I am beginning to feel better, and by all accounts will feel more and more like my old self each day now that the toxins are leaving my body for good.
Friday, May 16, 2008
A Supportive Husband
Check it out. My husband Charlie shaved his head so we could grow our hair back together over the summer. I have a feeling his hair will grow back a lot faster than mine – but he hasn’t yet agreed to keep it even with me! He has been a wonderful caretaker and co-survivor during this pesky bout with cancer, stepping up to help with my parents and taking on extra chores around the house when I’m not feeling well, but most of all being a rock of support and optimism right from the start. I’m forever thankful he is by my side and I plan for us to continue to stay side by side for many more years!
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