Wednesday, August 27, 2008

Gone Today, Hair Tomorrow

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.

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.

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?

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.

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.

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!

Thursday, May 15, 2008

Chemotheray Treatment #4!!


Had my 4th and final chemotheraphy treatment yesterday and so far, so good. Dr. Muss (pictured) was still quite perplexed over my recent drug reaction, so he tweaked my treatment a little. He switched out my Taxotere with Abraxane which has less of a potential for rash. Dr. Muss also cancelled my Herceptin yesterday, and I'll receive a Neulasta shot today to ensure my white blood cell count stays up and I don't have another episode of Neutropenia and a stay in the hospital. In regards to my red blood cells, I'm still a little anemic, which accounts for much of my fatigue.

In an odd twist of fate, I knew 2 of the other women in my "pod" yesterday, one is a colleague of Charlie's and one is a friend of a friend who recognized me previously from reading this blog. We had an interesting discussion on the progession of the understanding of our pathology and treatment plan. Think about it. I "officially" knew I had cancer on January 7th, had two surgeries in January but did not find out about the pathology of my cancer until March 3rd. Although I knew immediately I was node negative, I still had to wonder what else was going to come my way. Then when I did learn of my pathology, it's a whole new language and it sounds bad - HER-2Positive, ER/PR Postive, High Grade, and on and on. This all sounds bad - you don't associate the word positive with something good when receiving cancer news and it takes a while for it to sink in that all these things are good because they allow you to fight the cancer with even more drugs - and the more tools in your toolkit, the more successful you are!

So, it is with this positive thought that I finished my fourth and final treatment yesterday and look forward to continuing my Herceptin treatments for another 10 months and moving on the Hormone treatment after that! I just keep remembering that all these treatments combined contribute to the reduction from 32% to 5% for the chance of a relapse and from 13% to 3% for non-survival over the next ten years. All I have to do is combine that with a dedication for 1/2 hour of daily exercise and 5 servings of fruits and vegetables which according to a recent study will increase my survival rate and I'll be all set!

Monday, May 12, 2008

Good Things About Hair Loss

Since I’ve opted to forego covering my head during this phase of my life, I’ve discovered the following “good things” about my hair loss from chemotherapy treatments.


• No more bad hair days
• Save money on hair products
• Help the environment – my showers are much shorter
• Drive with the window open and not worry about messing up my hair
• Sales clerks are very nice to me
• Strangers smile at me
• No need to be concerned about hat head
• Can wear pullovers without worrying about hair
• Can try on clothes while shopping without worrying about messing up hair
• Can sleep a little later – it takes less time to get ready
• When I run into someone I haven’t seen for awhile, they
immediately know what I’ve been up to

Thursday, May 8, 2008

Medical Mystery Tour

Get a cup of coffee, tea or a glass of wine - this is a lengthy post.

Well...where to start. You may have noticed it's been quite awhile since my last entry. One reason is I was feeling so well that I was having a hard time thinking of something to write about - who knew there would be so much pressure in having a blog about yourself? Anyway, on Wednesday, April 30, I went for a Herceptin treatment and felt fine, left there and went to the grocery store, came home made lunch and then it was all downhill from there. In the mid-afternoon, I started having some chest pain and because I can't think of another way to describe it - my throat felt "full". I took some anti-naseau medication and took to the couch. By about 9:30, the pain in my chest was quite intense (but not like heart attack chest pain - I've been trying to describe the pain for a week now and can't quite put it in a way that sounds less scary) so I then took a Percocet. At midnight, I woke up with a very itchy foot and thought I was having an allergic reaction to something so I took a Benedryl and went back to sleep. When I woke up in the morning, I thought something might be wrong and asked Charle if my eyes were swollen. His response was "I think you need to call the doctor."

By the time I talked to someone at the clinic, my temperature was at 100.6 and my eyes were getting worse. My nurse Jean told me to go to the emergency room. This photo was taken when we got to the emergency room at about 9:30 in the morning. The Attending doctor identified my condition as a drug reaction, even though I hadn't taken any new drugs. My oncologist, Dr. Muss, came in at about 11:00 and was very perplexed because allergic reaction/rash (by now I had red blotches beginning to appear at various spots on my body) is not a side effect of any of the drugs I am taking. A nurse arrived to access my port, take a blood sample and inject 50mg of Benedryl (and I now know the rush a Heroin addict must feel - I've never gotten so high so fast). Because I'm a chemotheraphy patient and my temperature was above 100.5, they had to take a blood sample from 2 different places - one from my port and then one from my arm, which as usual, took 2 people 3 tries..... Once this was done, Charlie went to work for a while and they moved me to a private room to sleep off the Benedryl and await the results of the blood tests.

Then mid-afternoon Elizabeth, the medical student from the Oncology/Hematology floor came in to tell me I was being admitted. Next came Dr. Plank from Oncology to tell me that my blood tests had revealed that I Neutropenic - which means the number of cells called neutrophils in my white blood cells was too low. Neutrophils are a type of white blood cell that fights infection. Having Neutrpenia means I had to be in a room by myself and keep the door closed at all times. Meanwhile, the rash is spreading to more places on my body - my legs, feet, arms, chest and back by now were pretty well covered with red welts, my lips were swollen and I was very itchy. Once I got to my room, I was visited by the Oncology Fellow and then a doctor from Infectious Diseases (just to be sure they said). I started receiving IV antibiotics, and would continue to recieve 2 different types 4 times a day for the next 5 days. Overnight, my hands and wrists became so swollen that I had to remove my hospital idenfication braclet and couldn't interlace my fingers - a intense itch accompanied the swelling. Our hospital here is a teaching hosptial, so of course, Friday morning brought a large gaggle of medical students to view "the rash". Dr. Plank told me it was official - I was a medical mystery!

By Saturday morning, the rash and swelling was subsiding, but my white blood cell count was still low and I was also told I was anemic and there was some talk of a transfusion, but in the end they figured I was young and healthy and didn't need to do that. I was given an injection of Neupragen which is similar to the Neulasta injection I received after my first chemotherapy. Dr. Muss explained that Neulasta is much stronger since it has to work in the body over 10 days, but the Neupragen is a daily injection and I wouldn't have the same painful side effects. I received a Neupragen injection on Saturday, Sunday and Monday.

Sunday evening at about 6:00 I asked for a couple of Tylenol for a slight headache and by about 7:00 I had a fever, red and burning ears, itching hands and feet - all common symptoms of a drug reaction. This meant two more blood cultures had to be drawn, and I had to stay in the hosptial for at least another 24 hours. Finally, the good news came that my white blood cell count was up and I would go home on Tuesday.

Of course, there was just a little bit more drama before I could get home. By 2:00 I was all processed and ready to go home, just waiting for Charlie to call me when he was leaving the office so I could meet him out front and the vital sign taker arrived. I told her I was going home, but she said as long as I was still in the room, she had to take my vital signs - and I HAD A TEMPERATURE. Fear hit me - after 5 days in the hospital, I wanted to go home. She told me she'd have to tell the nurse. Meanwhile, Charlie called and I attempted to leave, but saw the nurse in the hallway. She took my temperature - in both ears - and get this - each ear provided a different temperature. Off we went to Dr. Plank, who said he didn't think I needed to stay, but he wanted to call the Oncology Fellow just to be sure - he termed my temperature interesting and sent me home with a 7-day perscription for an antibiotic. So even on the way out of the hospital, I continued to be a mystery!

My Herceptin treatment for this week was cancelled, and I'm scheduled to receive my 4th and last chemotherapy treatment next week!

Thanks to my great friends who visited me at the hospital when I looked like an extra from a science fiction movie and didn't say a thing, and to all of you who called and sent cards - knowing you were thinking of me meant so much. Also, thanks again to my wonderful friends who made my quilt - I had it with me right from the emergency room and it made such a difference having the comfort of friends with me at all times - I have to admit, it was a little scary there for a while.

Wednesday, April 23, 2008

Chemotherapy Treatment #3

Three treatments down, one to go. We had another busy and successful day at the Vermont Cancer Clinic. I was, of course, wearing my official chemotherapy ensemble which has at its foundation the wonderful Believe shirt provided by my friends Rob & Paula. When Charlie called them after my first surgery he used the phrase “we just have to believe we’re going to win, just like the Red Sox” (or something to that effect, I was still in recovery wondering if I was ever going to be able to open my eyes and not want to vomit). Rob got on the Internet and searched for a Red Sox Believe T-Shirt and shipped one up for both Charlie and I. As you can see I have worn this same shirt to each chemotherapy treatment because I do believe I will be a long-term cancer survivor!

Started off with a quick line insertion for a blood test (still loving that port), a visit with Dr. Muss, my Oncologist, who reviewed the blood test results and said I was doing great. Back to the South Pacific Pod to take my pre-med’s, which include a 125 gm pill and 2 bags of IV medication. The massage therapist came by and offered a foot massage, to which I happily agreed. Finally started with my first bag of toxins at 11:30 and finished up the third bag at 2:30.

Dr. Muss’ nurse Jean stopped by to check-in and say hello.

My quilt was quite topic of conversation in the clinic. A number of nurses and patients came over for a look and were very complimentary – both of the quilt and the great friends that put it together. I watched the video before I left home, so I started the day with an extra dose of love!

Monday, April 21, 2008

Good News

That's right, I finally got some good news from a doctor this year!

A few weeks ago I met with a genetic counselor at the Familial Cancer Program with the Vermont Cancer Center at FAHC. My doctor referred me to this program because of the history of cancer in my family. When I met with the counselor, I learned that when two of more relatives in a family have cancer, the family has familial cancer. Familial cancer is sporadic and not necessarily due to the inheritance of a cancer-causiing gene.

Then there is inherited cancer, which means familial cancer results from inheriting a cancer-causing gene - this type of cancer is called hereditary cancer and can be passed on to future generations.

Due to my particular family history, the counselor suggested that genetic testing would be appropriate for me. A blood sample was taken and submitted for testing for BRCA genes, specifically BRCA1 and BRCA2, which if positive, can indicate a higher risk for breast and ovarian cancers.

As you probably have already guessed by the name of this post, my test results came back negative. Due to my family history, I still am at a higher risk that the general population for another cancer event (as opposed to a recurrence of the current cancer I am in the process of eradicating). Due to this higher risk, I will be working with the counselor to determine what the best course of action will be for monitoring and testing as we move forward once I'm finished with treatment.

Thursday, April 17, 2008

Halfway Point

It's hard to believe, at least for me, that I've passed the halfway point in my chemotherapy treatment. I've had two treatments and since the drugs do their thing for about 2 - 3 weeks after treatment I figure I'm halfway through today.

I must admit that I feel extremely lucky so far that I haven't really had too much trouble with side effects, although the famous fatigue that I heard about has set in and I am really tired, which is one of the reasons I haven't posted much this week. I can pretty much get to about 1:00 in the afternoon and then I really have to slow down. I'm still doing 1/2 hour on the treadmill every morning - I think that consistent exercise has been one of the reasons I've been able to get through as I have - although I do feel like I may be speaking too soon since I do still have two treatments to go.

Yesterday was Herceptin day and I am still in love with my port. I went without the Lidocaine to see how it was, and had no problem and only 1 stick. I went out to lunch afterwards with my friend Andrea and felt fine, but later in the day I started to feel ill and by the time 7:00 came around - I was off to bed with a funky tummy and what felt like the beginning of a head cold. Today the head cold continues, and I'm not sure if it's a cold or a Herceptin side effect, which are flu-like symptoms. Other side effects I'm experiencing are tender gums and sore hands - hardly anything too horrible.

Thanks to everyone reading for your wonderful comments and continued support - I so appreciate everything!

Sunday, April 13, 2008

The Plight of the Single-Breasted

You may think the decision process surrounding a mastectomy would be a difficult one, but it isn't really. You have cancer and you want to do whatever is necessary not to have cancer. If that's a mastectomy, then that's a mastectomy. After all, I was hardly worried about having to nurse a child at a post-menopausal 48. Although, in the spirit of full-disclosure, last fall I did decide I was going to embrace my cleavage and even bought a few new v-necked tops - quite out of character for me, as I spent most of my adult life ensuring I was wearing a top that did not offer a peep show. So much for that idea. But I digress and it's just the first paragraph.

Actually, the decision about what to do after the mastectomy has way more options than I would have thought possible and none of them conducive to my choice. I had to make the initial decision regarding reconstruction on that phone call with Dr. Majercik when he called to inform me of the necessity of the mastectomy - he asked if I wanted to do immediate reconstruction - if so, that would push the operation back a few weeks until we located a plastic surgeon. I firmly told him I wasn't interested in even thinking about that at this point and just wanted to move forward eradicating the cancer - now wasn't the time for vanity.

With apologies to anyone reading this who did opt for immediate reconstruction - I can't imagine why a person would do that. It's like pushing dirt under the rug - you don't see it, but you know it's there. Immediate reconstruction would have robbed me of the opportunity to emotionally and physically heal and meet the new me - a little bit more each day. It wasn't easy. My mastectomy scar is almost 10" long, and let me tell you, initially not very pretty. But by having physical therapy and massaging "the site" with vitamin e oil every day, I got to know this new part of my body and now when I see myself in the mirror I truly do see a survivor. I currently have no inclination to investigate reconstruction, even though both my husband and my doctor counsel that I may change my mind some day.

The other option is a prothesis - yes, I have a prescription and the insurance company will buy me one every 2 years and 2 mastectomy bras a year (or some such combination). Want to be boggled - search the internet to try to pick out a breast prothesis. Just do the search. I got 367,000 hits for "breast prothesis" and 59,500 for "post-mastectomy bras." One website listed 11 different types of prothesis - from silicone, to gel, to foam, to fiberfill. Yikes. But nowhere did I find a undergarment answer for those women like me who are perfectly content that this is now their body and would just like to live with what there is.

What's a girl to do? Well for now I've cut out the right cup out of all my very pretty bras and made them not so pretty anymore. After all, I don't want to spend the rest of my life squished in a sports bra do I? I've got a great idea for a website for build-it-yourself single-cup bra's, I just can't figure out how to make the bras. Any ideas - proposals - business partners?

I did find a website breastfree.org, that had a list of the positive reasons women decide against reconstruction and flatter myself that I'm a match.

  • They're strong women who don't feel their breasts define their identity.
  • They're confident women who know they can look great in clothes without showing lots of cleavage.
  • They're active women who want to continue exercising without any restrictions.
  • They're mature women who understand that love of spouses, friends and family isn't dependent on having breasts.

Wednesday, April 9, 2008

Wonderful Friends - THE MOVIE

For your viewing pleasure

Click on this two minute video of the day 14 of my Massachusetts friends got together to create a beautiful quilt for me which in their words is to "cover you or wrap around your shoulders during treatments to represent the friends who want to wrap you in their love."

Careful - it's a tear jerker....


Treatment Update

First treatment with port access today. Last week access was left in after insertion, so I wasn't sure what accessing the port would actually be like until today. I must say, it made everything so much easier. Just a quick prick and slight burn with the administration of Lidocaine for numbing and then insertion of the needle which I didn't even feel. A quick 10 minute process with no anxiety, no pain and no boo boo's! I must admit, never in my wildest dreams did I think I'd be singing the praises of having an "implanted vascular access device." I received my half hour dose of targetted therapy with no problems and was off on my way to the best medicine of the day - meeting my friends Becky and Cindy downtown for lunch.

I did experience a chemotherapy patients worst nightmare today - a windy day. I haven't really been covering my head much unless it's cold, but today since I was going out to lunch I decided to wear a hat - cute little newsboy number - and, yes, it blew off my head. After that I just gave up and went without cover - sometimes it just doesn't seem worth it to worry about it. Like I said to nurse Deb when she was worried that my bandage might show and I was heading out to lunch - it is what it is.

Tuesday, April 8, 2008

Feelin' Fine

So it's the 5th day since my last Chemotherapy treatment and I'm feeling quite well. On Sunday and part of yesterday, I did have pretty much a "maybe its better if I just lie down" kind of a day, but nothing really bad. I've been able to continue to walk either on the treadmill or outside for at least 1/2 hour every day and I've been able to continue to eat healthy meals. The first couple mornings I switched over to Carnation Instant Breakfast, but this morning had no problem with the pancakes and bacon we had to celebrate my mother's 87th birthday.

I've learned that one key to a successful morning is slowing the process of getting up (although I'm not sure that's possible for me - an expert snooze alarm manipulator). I've found waking up and having a few crackers and something to drink and waiting for 20 - 30 minutes diminishes the chances of long-term upset stomach, which is probably something all of you who have faced morning sickness already knew - but it's news to me. Also, a friend of mine gave me some great ginger chews which have proved to be quite helpful for settling my stomach - especially after eating. I'm working hard to continue to eat right, exercise daily and get enough rest so that the incredible machine we call a human body, aided by some pretty cool science, can do its thing and ensure I have a long and healthy life.

If you have any tips or tricks for getting through chemotherapy, or even just run of the mill stomach ailments, please feel free to share those in the comments section. THANKS!

Monday, April 7, 2008

Wonderful Friends

13 years ago, in the spring of 1995, I took the classified ad I had cut out of the paper and carried around with me for months out of my wallet and picked up the phone. A very warm and caring woman answered on the other end and changed my life! No, I wasn't calling a rehab - I was calling the Suburban Adventure Club (SAC) in Massachusetts. I told her of my circumstances and that I wasn't looking for a dating club, but wanted to take my life in a new direction. In her turn, she convinced me not only to give the club a try, but to go away for a weekend in Martha's Vineyard with a group of complete strangers. Believe it or not, I agreed. Those strangers, some I met that very first weekend, and others I met over the next months and years, have turned into some of the most important people in my life ( I did eventually meet my husband through the club). I can honestly say that without the lifeline of these friends, those first days and weeks of my diagnosis and surgeries would have been a completely different experience. Cards, letters, emails and gifts came pouring across the border to brighten my days and help me remember there were people out there who cared about me.

Then, a few weeks ago, a gift that cannot adequately be described in words arrived (see photo). They had a quilting day and made me a beautiful quilt which will allow me to wrap myself in their love and caring, not only as I continue through my treatment, but for the rest of my life. There have been very few times when I have cried through this process, mostly when I'm tired, but when I opened the package and realized the extent of what I was holding in my hands, I could not stop the tears (as I cannot stop them now as I write this). You may have noticed my new quilt in the Chemotherapy #2 treatment photos from last week, and you can be sure that you will see it in all the remaining treatment sessions.

Support is such an important part of cancer treatment. There are as many ways to support a cancer patient as there are patients that need that support. Just take a minute to think through what the person you know needs most – sometimes it’s a dinner or a ride and sometimes it’s just to be treated like a person without cancer and then a lot of the time, it’s just to let them know you love and care about them. And, as my friends have shown, there is the completely unexpected, and forever treasured.

Thursday, April 3, 2008

One Busy Day

Today was quite a busy day! I arrived at the hospital at 6:30 and checked in at Registration, and yes, of course, there was some confusion surrounding my procedure and my chemotherapy. The person helping me had to get assistance to figure out what to do - nothing is ever easy. Eventually they figured it out and sent me on my way and I arrived at Radiology at 7:00 on the dot. I was called quickly from the waiting room to head to pre-op where a nurse inserted an IV line, checked vital signs and went over paperwork with me. Next a Physician's Assistant came in and went over the device and described how the procedure would work. Off we went to the operating room - get this - 15 minutes early. I received sedation through my IV and then some localized injections. I felt some pressure, which I understand was the manipulation of the catheter into the vein and seemed to be awake the whole time - the PA kept popping his head under the sheet that was stretched over me to check on me, he was very entertaining. I didn't experience any pain, other than some stiffness in my throat, which went away after the Oncology nurse changed the bandage for me. It didn't really seem to take too long and I was whisked off to recovery. This photo is in the recovery room after my english muffin and ginger ale! I left Recovery for Oncology at a little after noon time.


When I arrived at Oncology, I met with Dr. Muss who after a brief discussion decided to cancel my Neulasta shot tomorrow, it turns out that I have good bone marrow to start with and for women in my age group the medicine only drops the chance of infection from 8% to 4%, so the payoff for the pain I had from the injection wasn't there. Finished with Dr. Muss off I went to the clinic for my treatment. First blood was drawn (through my new port) for my genetics testing (more on than in a later post) and the saline and nausea medication drips were attached. Because my appointment was originally scheduled for yesterday, the computer hadn't
caught up with the change and there was some issue with the Pharmacy in getting my drugs mixed. I didn't start my Taxotere until 2:30, which meant with 3 drugs, I was there until a little after 5:00. It was great to have the drugs going in through the port - it left both my hands free, which makes it much easier when you have to pull your IV pole with you to the bathroom, to eat, and just to be comfortable while receiving treatment.

While I was having treatment, in the chair across from me was a woman in her 30's with her mother. They were obviously close and enjoying each others company. It made me quite sad that my mother can no longer provide that kind of comfort for me. She doesn't really understand what is happening and she certainly wouldn't be able to come to the clinic with me to provide comfort. It's an odd feeling to have my parents with me, but not have them really engaged with what is happening to me. Most of the time I'm fine with the way things are, but there are sometimes, I'd just like to be sick and not have to explain it all over and over again.

The day surely ended on a bright note - I have such wonderful friends who have all been so supportive - when I returned home today from this long day of treatment, there was a box of from Harry & David from a friend in Massachusetts. That was a great treat to come home to!

Tuesday, April 1, 2008

Any Port in a Storm

Well, it looks like the drama associated with IV 's will be soon be over. At a meeting at the clinic today, it was decided that I will receive a port implant on Thursday morning to help me weather the tempest that is chemotherapy and immunotherapy treatment delivery. The port is "installed" in my chest during a brief surgical procedure under local anesthesia. My procedure is scheduled for 7:00 am and once I've recovered, I'll be able to receive my chemotherapy treatment (a change from Wednesday to Thursday for those of you following along).

I spoke to a woman who had a port during my treatment last week, and it appears to be quite easy to manage, nothing bothersome and makes everything that much easier. Since I will be having treatments for a year it sure makes a lot of sense, and will take the worry of whether or not it will be a difficult insertion or not out of the chemotherapy equation. For anyone who knows me, I have a tendency to suck it up - just ask anyone who's heard my rant about how the doctor's never give me any drugs and everyone else gets all kinds of drugs. I've finally realized that this is the one time in my life I'm probably allowed to be a little less tough and there really is no need to have IV anxiety for another year.

For more info on Ports, please see link under Breast Cancer Links.

On another note. Today was my first day out and about in the world with no hat and my new "hair". I did go out on Saturday, but it was cold and I wore a hat. Today was in the 60's and I went au naturale to the hospital, Walmart, Marshalls, the Humane Society, the Bank, TJ Max, Rite Aid and P&C, so I guess I'm ok with how it looks now - hopefully will continue that when it's all gone. It felt great - it was warm and a little breezy - I've decided I can't wait to jump in the pool and feel the water on my head. A friend of mine once said hair is highly overrated and I'm beginning to believe him. Showers are shorter, no hair to blow dry, and definitely no bad hair days. Of course, I'm saying all this while I still have a little bit of hair on my head - I may change my mind once I've lost the last of it, but for now it's rather freeing.

Friday, March 28, 2008

Mindfulness

I heard Oprah recite this poem on her Soul Series radio program about mindfulness and I found it compelling - maybe you will too!

Love After Love by Derek Walcott


The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror,
and each will smile at the other's welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.

Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your image from the mirror.
Sit. Feast on your life.

What's the buzz?

This afternoon my wonderful hairdresser Willow took me to the next step in my survivor journey. I've given a lot of thought to how I feel about the loss of my hair and came to the realization that it's not necessarily the loss of the hair, but what it represents. This may sound funny coming from someone who lost a breast a mere two months ago, and has spent a day a week for the last 3 weeks in the Oncology clinic, but this step really brought home what I'm faced with. A friend said yesterday that when you loose your hair, you know you have both feet in - chemotherapy becomes real, and that's a very true statement. Not only that, but now I'm not only a cancer survivor on the inside, but on the outside as well. Complete strangers will only have to look at me to know what is happening in my life
(yeah, as opposed to the complete strangers who may be reading this....but I don't have to look back at them). So, here's the tip - when a cancer survivor wants to talk to you about the loss of hair - don't respond with it's only hair, it will grow back - to steal a line from a title of a book by Debra Jarvis, it's not about the hair - it's about the milestone that the loss of hair represents. Talk to her about what she's really feeling.

Wednesday, March 26, 2008

Herceptin Treatment #3

No, you won't be disappointed. There was some light drama associated with today's Herceptin treatment. Another gloomy morning in Vermont awaited us as we made our way to FAHC and the clinic for my Herceptin treatment. Once there, I was weighed and blood pressured and led to the South Pacific Pod, overseen by a wonderful oncology nurse named Deb (seen here attaching my IV line). We settled in, the hot pack was applied and the moment of truth arrived - would the insertion be a challenge - YES IT WOULD. Deb gave it the old college try twice and turned me over to another, who after a few minutes identified a vein and moved forward with a baby needle. Into the skin we went and then there was quite a few minutes of deep breathing while she manuevered that IV into a vein that was playing peek-a-boo. The good news is last week Deb gave me instructions on focused breathing for relaxation which I had been practicing all week and that certainly came in handy today. Once in, the Herceptin flowed flawlessly for 30 minutes and we were done. Mission accomplished - more cancer cells killed today!

Tuesday, March 25, 2008

Yikes, what's that in my hand?

It's my hair, that's what. Yes, today, 2 weeks to the day from my first chemotherapy treatment, my hair has started to come out. I put my hand through my hair today and came away with a handful. The nurse told me it would be 2 to 3 weeks after the first treatment when my hair would come out and I've been waiting for the day when it would happen - I didn't know how I would feel and honestly it felt really weird.

A wonderful friend of mine sent me a book, I Am Not My Breast Cancer, by Ruth Peltason, which is a support group in a book. When I came away with hair in my hand, I immediately opened the book to the hair loss chapter and read entries from brave women around the world and how they coped with hair loss. I learned there were as many ways to cope as there were women with breast cancer. It's funny, even though you know it's going to happen, you aren't really prepared for it when it does. I still can't put my emotions into words, I just looked at the hair in my hands and went, huh, how about that. Now what am I going to do? I know I do not want a wig, nor do I want to wear "chemo scarves" but I'm just not sure how I'll feel about being bald in public - how will other people react? I guess I'll find out. I'm also worried about my mother who has mid-stage Alzheimer's disease and lives with me. I hope she remembers why I have no hair and I don't have to explain multiple times a day, day after day. It took almost a month of daily explanations until she could remember I had cancer - but she thinks it's in my arm....something I don't bother to correct.

Sunday, March 23, 2008

Drive Through Mastectomy

When my surgeon called on Wednesday afternoon to change his recommendation from excision to mastectomy for the next day and told me it would be an outpatient procedure, I remember being quite surprised (as has pretty much everyone I've told that I had a mastecomy and went home the same day)! Actually, the low-key Dr. Majerick probably held the phone about a foot away from his ear when I shrilled "tomorrow, don't you need more time in the OR - don't I have to stay overnight?" He calmly answered that it wasn't major surgery and I would be fine to go home. He was, of course, correct. It wasn't major surgery (in the true - surgery sense), and I was fine to go home. Believe me the last thing I wanted to do at that time was spend any more time in the hospital than I absolutely had to. And this was my second surgery - I already knew how to take care of my drainage tube because I had had one with my axillary dissection and I was 2 weeks recovered from that procedure. At this time I had no idea that it was the insurance companies that were deciding how much time women can spend in the hospital after such a surgery. I am sure there are woman who would benefit from having the option of spending the night in the hospital after such a procedure and certainly spending up to 2 nights after a dissection.

There is currently a bill in subcommittee - H.R. 758, which would require that health plans provide coverage for a minimum hospital stay for mastectomies, lumpectomies, and lymph node dissection for the treatment of breast cancer and coverage for secondary consultations.

Please take a few minutes to visit this site and sign the petition urging congress to pass this bill.

Thanks!

http://www.mylifetime.com/community/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

Saturday, March 22, 2008

A Night Stand Tableau

So, I rolled over this morning and was greeted by this scene and this is when it hit me - I'm sick. A person's night stand is an excellent window into their life at a point in time. My husband, for example, is an eternal optimist. I know this, because he always has at least 6 books on his night stand that he intends to read, but has only about 10 minutes a day to read them. I am sick. I know this because when I awoke this morning (I sleep on a platform bed which makes me eye level with my night stand) looking back at me was a row of perscription bottles, a box of tissues, Overnight Lip Therapy, saline spray, a bottle of water, a bottle of Advil and a bottle of Tyelnol and a container of Sunsweet Ones - individually wrapped prunes. Of course, I also have 2 containers of very nice lotion - rose for my hands and lavendar for my body, so it's not totally a medicine cabinet, but it is undeniable proof that I'm sick. I haven't really considered myself to be sick throughout this process. First I had surgeries, you have to recover from them, but that's not the same as being sick. I had 5 weeks of recovery in between, when I felt pretty good - I had books on my night stand then too. But now, it appears that I'm sick and have to own up to it, at least until I can figure out how to keep all this within reach, but not on my night stand.

What's on your night stand?

Friday, March 21, 2008

Oh, my nose!

When I was at the Cancer Center the other day for treatment, I mentioned that I was having trouble sleeping which really isn't anything new, but I thought maybe I could get some help. The nurse suggested that I try using Benadryl as an option. I had occassionaly used this in the past, so I thought I'd give it a try. Yeah, that was a mistake! I took 2 Benadryl 2 days ago and my poor little nose hasn't been the same since. Benadryl clears up a runny nose - I didn't really have a runny nose, so my normal nose (which, lets not forget has been subject to the effects of chemotherapy) got extra-dry and began to bleed. So, I am now without the option of Benadryl-induced sleep and have become addicted to my nasal saline spray.

Thursday, March 20, 2008

Herceptin Treatment #2

No photo shoot at this one....forgot the camera. My first weekly Herceptin treatment could have gone just a bit smoother, but then again, if there was no drama associated with it, I would have questioned the event! When Charlie and I arrived at Oncology at 8:50, there was a line to check in and barely a chair in the waiting area. Weigh in (lost a little) and blood pressure check in, and it was off to Chemo Pod #3 for the morning. I had a great location. The only chair in the pod with a window view and the chair was turned to face the window instead of the other patients. I'm trying to figure out how I can reserve the location for the next 3 months! Had a successful IV insertion, but there was a problem with my IV tree and that had to be switched out, so that the saline could be started. I shared my bone pain tale with the nurse and learned the reason - my white blood cell count was 37,000 - a typical count would be between 5,000 and 10,000 - so clearly my bones had been busy! The pharmacist delivered the Herceptin and I was promptly hooked up for my half hour drip. Charlie went to get coffee and I thought we'd be ready to leave by the time he got back. Not so fast.....come to find out, for about 45 minutes the Herceptin wasn't actually dripping after all, so the drip didn't start until Charlie came back with the cofee. We finally left at about 12:30. So that's 3.5 hours for a 1/2 drip every Wednesday for the next 3 months and then once every 3 weeks for the next 9 months.....of course, the good news is that chemotherapy patients have free parking - something which thrills my husband to no end. For months he's been asking at every department at the hospital if they validate.

Chemotherapy Treatment #1 Side Effects

So far, I have experienced very limited chemotherapy side effects. I had no real naseau, thanks to the great drugs I was given, but did have some quesiness and heartburn. I have discovered I can no longer tolerate foods with tomato - does that mean I won't be able to have a pizza until June??? Yikes! Once I cut out the tomato, my heart burn pretty much disappeared. I'm working with Instant Breakfasts for breakfast and dinner and trying for some solid food at lunchtime. I have a slight metallic taste in my mouth and my sense of taste has pretty much disappeared except for very strong flavors - I'm suddenly a peppermint patty fan. This morning I discovered if I put a layer of honey under the layer of peanut butter, I can get down some high-fiber toast.

The Herceptin (which I receive weekly) produces flu-like symptoms - sore throat and neck, slight ear ache.

Effects of Neulasta Shot

I did experience quite a bit of pain from the Neulasta injection I received the day after chemotherapy. Neulasta stimulates bone marrow to increase production of white blood cells which can cause pain in the "long bones", and in my case was quite painful. I was leary of taking additional medications, so I although I did take some Tylenol, I waited until the pain was close to unbearable. I found that baths helped and on Saturday took two! I now know that I should have taken Advil (3-4 of them) around the clock and could have avoided much of my discomfort. Lesson learned: my tendancy to tough it out will not serve me well during this experience. Most of this pain has passed, although I seem to be having trouble with pain in my feet during the night - last night was very painful.

Chemotherapy Treatment #1

Here I am at my first chemotherapy treatment. I arrived at 9:00 am and didn't leave until 4:30. Upon arrival, the IV is inserted and a blood sample taken. Next up is a meeting with the doctor and a review of the lab results. Then it's back to the "chemo pod" to await the on-demand mixing of my toxins by the pharmacist. Pop back a couple of Benadryl and Tylenol and I'm ready. The first bag is an anti-naseau medication, and then I'm surprised as the oncology nurse dons a hazard coverall to change my medication - that doesn't really leave you with a comfortable feeling. The chairs are comfortable enough and once Charlie left at about 1:30, I put on my ipod and slept for a few hours. The remaining treatments will be one hour shorter as the first Herceptin treatment is a larger dose than subsequent ones.

Pathology

Cancer:

My cancer is invasive, Stage 1 and Grade 3. This means that it started to break through normal breast tissue barriers and invade surrounding areas, Stage 1 means the tumor was small (1.6 cm) which usually means a better outcome, but Grade 3 is the highest grade of cancer which suggests a faster growing cancer that's more likely to spread. My cancer is also HER2-positive. This type of cancer tends to grow faster and is more likely to recur than HER2-negative cancer. The cancer is ER and PR Positive, which means the cancer is receptive to hormone-blocking medications to slow its growth.

Treatment:

The current plan is a 3 prong approach consisting of chemothepy (four, three-week cycles); Immunotherapy (Herceptin) for the HER2-Positive (administered weekly intravenously for 1 year) and a yet to be determined hormone-blocker for a long period of time - up to 5 years or more.

By taking this combination of drugs, I will reduce my risk of relapse (relapse is defined as new breast cancer (30%) or spread (70%)) from 32% to 5% and the risk of not surviving from 13% to 3%.

Surgeries

When I arrived at my surgeon's office for my diagnosis, (btw my husband was away on a business trip in Texas and I was alone) he had already made arrangements for my surgery, January 17th. I found my lump on December 25th, received my diagnosis on January 9th and had a surgery date for January 17th. Talk about head spinning. The recommendation was for a lumpectomy, which I agreed and the thought was I would then have 6 weeks of radiation. Aha, this was not to be. During my lumpectomy, another tumor was found behind the one that I had discovered, along with another "area of cancer" and my sentinel node tested positive as well, so I had an axillary dissection. When I awoke after my surgery, I found that it wasn't the 2.5 hour surgery I had expected, but 5 hours and I was staying overnight. I went home the next day with bandages and a drainage tube. When I returned to the surgeon's office the next week for a follow up and to have my tube removed I received the news that my margins weren't clean and my surgeon recommended an excision for the next week, he had already scheduled the operating room. The next day my surgeon called and told me he had brought my case to the tumor board and they had recommended I undergo a breast MRI prior to the excision. The MRI was scheduled for Sunday morning. When I arrived at the appointment time, I learned an IV was necessary and they initially told me I would have to put my arms over my head (impossible due to surgery). After six unsuccessful tries by 2 IV nurses, I was sent home with a return date for Tuesday evening. On Tuesday I did have a successful MRI and on Wednesday afternoon the surgeon called to say the recommendation had changed to mastectomy and he would see me tomorrow. Yes, less than 24 hours notice for the loss of a breast - actually a blessing. I had my mastectomy at 12:30 and was home by 6:00 pm the next night - complete with yet another draingage tube and a chest full of bandages.

Discovery and Diagnosis

I found the lump in my breast on December 25 - yes, that is correct, Christmas. Ladies, BSE on your schedule whether it's a holiday or not. Trust me, it can save your life! I saw my primary care physician on December 31 and could tell by her non-commitment that it didn't look good. Her office made an appointment with a surgeon for me on January 23rd, with the agreement that they would try to find something sooner - that being too long to wait. On January 2nd the surgeon's office called with an opening and I went that day for my biopsy. The surgeon did the biopsy and an ultrasound and felt that the small lump (size of a lima bean) that I had found was what there was. His words were "it has some characteristics of a cyst" but he didn't sound very convincing. The nurse said it would take about a week for results and they'd call me, the doctor said I should go ahead and make an appointment for the next week - again, not a positive feeling. The next week, the diagnosis was, of course, breast cancer.