Sunday, December 28, 2008

With friends like these, how could a girl go wrong!

I'm so glad I was able to get up to Vermont over the holidays to see my wonderful peeps up there! They've been so supportive through all this cancer crap! I can always count on my northern friends to cheer me up and take my mind off my situation. There's just something about Vermont that feels like home. Love you guys, and you'll be seeing much more of me on the mountain!

Monday, December 22, 2008

A big thank you

I want to thank everyone for the cards, gifts and messages I've received through Meaghan's Spirit Jump program. It was completely unexpected and quite moving to have things mailed to me from complete strangers! I am so glad that I've found a strong support system through my online friends. I'm so glad that I took the advice of my medical team and reached out to others facing similar struggles.

Also, thank you to Nana's Box. I received my box a few weeks ago and love the quotes on the cards. I actually made a 2009 calendar with photos from my cancer experience and quotes for each page . . . reminding me to be strong and optimistic.

Thank you all for your support and love!!!

Sunday, December 7, 2008

My story - part 5 (radiation)

After the mastectomy I had about 6 weeks of healing time before they wanted me to start radiation. I was hoping that radiation was not necessary because the doctors told me that the pathology indicated "no residual cancer" in either the tissue or the lymph nodes . . . "a complete response to chemo". Excellent, I'm cancer free! The doctors were pleased with the result; however, they still felt that radiation was my best chance to avoid local recurrance. So, fine . . . they must know what they're talking about.

I started radiation in early September and had to go 5 times a week for about 6 weeks. The radiation itself wasn't that bad, it was the driving and the fatigue that was the worst, plus I was still trying to work during this process. It would have been helpful if the hospital was close to work, but of course it was 1.5 hours away! Something had to give, I ended up taking more time off from work to concentrate on my recovery. About 4 weeks into the treatment I started to develop a burn from the radiation and I was beginning to notice some capsular contracture around the tissue expander. I was told that this was very likely with implants and radiation but I was still hoping that it wouldn't happen to me. All we could do was plug on and hope it didn't get worse. My radiation visits ended on October 9th. By that time I had a burn from my armpit to the center of my chest which was quite tender and peeling. Yuck! But from what I've seen, my burn was mild compared to some! One good thing . . . hair still doesn't grow on the armpit on the side of radiation, so I only have to shave the left! There's always an up side to everything!!
Beam me up scotty!

After radiation ended I went back to my plastic surgeon. He still wanted to fill the tissue expanders so that my micro surgeon in Boston would have options for my reconstructive surgery. Because of the burn he decided to wait a few weeks before doing the first fill. When it came time for the fill it was one of the weirdest experiences so far. They put 100cc in each side, it was like insta-boob! I could really notice the capsular contracture then. The right side was tighter and higher than the left. But, I just kept my mind on the fact that it wasn't forever. These would be taken out at the time of reconstruction and all would be fixed! I had one more fill about 4 weeks later, 100cc in each again. One more step down . . . now just have to head back down to Boston to meet with the surgeon and see what she thinks about reconstruction options.

Sunday, November 30, 2008

Friday, November 21, 2008

My story - part 4 (mastectomy)

Making the decision to have a double mastectomy was one that I went round and round with. The cancer was only in my right breast. I went online and started gathering information on types of reconstruction options, weighing all sides. I decided that I did not want to chance it that the cancer would come back in the left breast, so I opted for a double mastectomy. Plus, the chances of a symmetrical reconstruction were better when done to two breasts, instead of trying to match the other. The surgery was scheduled for July 23rd.

The day before, I had a bunch of appointments. Even though there was no cancer on the left the doctors wanted to do a Sentinel Node Scan to mark the "gate keeper" lymph nodes and remove them for biopsy . . . just to be sure. I got to the hospital that morning with my friend Shane, he was my photographer for the day, and they had the wrong information. They were about to inject me on the right side . . . a quick call to the doc, confusion settled, let's proceed. They injected me with a bit of radioactive blue dye and put me under a machine with a large lead cone on my breast so they could isolate the lymph nodes. All the while, my friend there thanking his lucky stars that he was not born a woman!

The surgery was scheduled for 7am the next day, which meant getting up at the butt-crack of dawn in order to get there by 6am. Strangely, I wasn't nervous at all. I had been through surgery before, and had come to terms with losing my breasts so it was just like any other day to me. My dad and step-mom drove me down to the hospital and the waiting game began.
With my step-mom in the waiting area.

After meeting with both surgeons and the anesthesiologist they began the prep. I don't even remember being wheeled out of that prep area to the O.R. Before when I came out of surgeries I would be very emotional. This time, nothing. Must have gone in with the right mindset this time!

I was thinking that after the surgery I would have no boobs at all. That wasn't the case, the tissue expanders they put in were filled to 300cc. When they removed the bandages to show me how to take care of the drains, I was pleasantly surprised to see that I had foobs!

The weeks following the surgery were painful and boring. It felt strange having foreign material in my body. I just kept telling myself . . . only for about 8 months, just until reconstruction can begin. Next step . . . radiation.

Friday, October 3, 2008

My story - part 3 (chemo)

I started chemo on March 4th. While torn with the possibility of never being able to have children, I was anxious to begin treatment, the tumor was still growing and I had developed a rash. The nurses were unable to access my port that first day and were shocked at the size of the scar that I had from it. A week prior I had gone back to Dr. O to have the port placed. He said that it was a “simple procedure” and I remembered that it was from my mother’s experience. Not so with me, apparently I have difficult anatomy. What was supposed to be a 1-1.5 inch incision turned out to be 4 inches! He couldn’t locate whatever vein he was looking for so basically went digging around and finally had to tunnel up to my jugular. So, the nurses just inserted an IV and off we went into chemo land. My dad came with me to my first treatment and I got some pretty strange looks from the other patients when I was the one to sit down in the chair and not my dad. I was by far the youngest patient. Shortly thereafter I fired Dr. O and got another surgeon, a breast surgeon, Dr. C.

I felt ok after most of the treatments. The anti-nausea drugs were amazing, through all 6 cycles I never threw up once! The biggest hurdles were fatigue, muscle and joint pain, hot flashes from early menopause, some bathroom problems I'd rather not go into, and now nothing tasted normal. I was bound and determined to find something that tasted good, no such luck. I thought I was going to lose weight while going through chemo, sorely mistaken, I gained about 35 pounds! My hair started to fall out just before my second cycle. I knew that it would so I had got a shorter haircut the week before. It was now so bad that every time I ran my fingers through it I would have a handful of hair, not just a few strands, a handful! I decided it would be best just to shave it all off, so I called up my brother and out came the buzzers. We had a great time shaving my head. It surprised me how comfortable I was with losing my hair and hardly wore the wig I had got.

Friends came with me to the next few treatments. We joked that I was the Samantha character from “Sex and the City”, only younger and not promiscuous. The nurses got a kick out of us. I would bring my laptop, iPod, magazines, cards and whatever else we could find to make the hours pass by quickly. I was determined to lead a semi-normal life so I was driving myself to my appointments and even went to chemo alone for the last two cycles. I worked part-time for a while but eventually just ended up taking a medical leave. I was trying to get out of the house every day, but some days I never made it off the couch.

My whole medical team was amazed at how well I was coping with the entire situation but was afraid that the bottom might fall out. It’s very easy to fall into depression after receiving a cancer diagnosis, not to mention recently losing a parent on top of that! On many occasions I was given flyers for support groups and told to check out different breast cancer websites. I was stubborn though, what would I have in common with the people in the support group besides cancer? I was 31, single and had no children. Most of the other women in the group were much older, married and most had children – they couldn’t even begin to understand my situation! So, I dealt with it on my own for months. Then I found out about a conference for young women with breast cancer hosted by Dana-Farber and decided to go. I got so much great information and it turned me on to the whole support group idea, no matter how far I had to drive!

I was having an excellent response to the chemo. Every few weeks I met with Dr. K and after each cycle the tumor got smaller and smaller. I’m thinking great, no mastectomy needed! I was wrong, because of the initial size and advanced stage, mastectomy was my best option to reduce the chance of recurrence. Time to find a good plastic surgeon for reconstruction, enter Dr. B. He came very highly recommended by a friend and I immediately felt comfortable with him, he was a straight shooter. We discussed my reconstruction options and fears. My biggest fear was making the wrong decision. I knew there was cancer in one breast, but what about the other? The MRI indicated a “suspicious area” but we didn’t biopsy the area, instead an ultrasound was done and showed a cyst. Should I have both breasts removed anyway? How would I feel about wearing a prosthetic if only one was removed? What should I do?! I bought books on breast reconstruction, logged into chat rooms and read blogs – anything to find out what the “right” decision was. I was leaning towards bi-lateral but was unsure if I was being too radical. I was going out of my mind and needed help before I snapped. My salvation came while standing in the middle of the health/wellness section of Barns & Noble and making a phone call to Dr. B. I asked him what I should do, if he had a daughter my age what would he advise her to do? “Remove them both” he told me, “and that’s a personal opinion, not a medical one”. Thank you so much!! I was so relieved I almost cried. Now, what reconstruction option to go with – implants or tissue transfer – shit, yet another decision, more research!

I wasn’t too keen on the idea of having implants, especially since I would have little to no breast tissue left – the implant would be obvious. Dr. B advised me that a tissue transfer was probably the best option, it would give a more natural look. I have tattoos across my abdomen and I was concerned about them being transferred to my chest in the transfer process, I didn’t want that. He suggested doing immediate delayed reconstruction, meaning at the time of the mastectomy they would insert tissue expanders. The job of the expanders was to preserve as much of my original chest skin and would be filled with saline over time and eventually swapped out at the time of the reconstruction. I never knew how many different options for new breasts were available! I decided to go with a DIEP Flap, where they take tissue from the abdomen and move it to the chest – it’s like getting a free tummy tuck and new boobs all at once! (Some light at the end of the tunnel) I found a micro-surgeon in Boston at Brigham & Women's, Dr. C. I met with her and she agreed that DIEP was the way to go since I had to have radiation, but it would be a long recovery process. On top of that, they wouldn't start the reconstruction process until 6 months after radiation ends. Great, expanders for many months!

My last chemo was June 17th. By that time I couldn't even feel the tumor. I was amazed at how squishy my boob was, it hadn't been like that since before the reduction. Before the surgery they had another MRI done and couldn't find any suspicious areas at all. Great news! My mastectomy was scheduled for July 23rd.

Wednesday, September 10, 2008

My story - part 2 (you have cancer, now what)

How did I find out that I have breast cancer? Well, read on . . .

In January I noticed that my bra was not fitting anymore on the right side. I knew that the dryer didn’t shrink just half of my bras, so obviously my breast was growing - but why only one? Maybe it was stress. I called Dr. O back and told him what was going on and that I was ready for the biopsy. I saw him the next week, he told me that the unusual growing could be hormonal and that seeing an endocrinologist might be helpful once the results of the biopsy come back. He also suggested that since I had never had a mammogram I get one done before the biopsy. We scheduled it for January 31st and the biopsy for February 8th.

The day of the biopsy he told me the results of the mammogram, “suspect multiple cysts in the right breast”. Ok I’m thinking, cysts are not scary, I can deal with that, just drain them. When I woke up in recovery and Dr. O came to talk with me there was a very different look on his face. He told me that it definitely was not a cyst because it was hard as a rock and to be extra cautious he took a large piece of it for biopsy. He made me an appointment for that next Tuesday to go over the results.

February 12th, results day. I remember this day so clearly. Aside from some soreness from the biopsy I was feeling pretty good. I just had an awesome weekend, we got our profit sharing checks at work and I was looking forward to planning a snowboard trip out west. My appointment was first thing in the morning so I got in to see the doctor right away. I knew the moment I walked in because he had that same look on his face. “I wish I had better news for you”, what? Wait a minute; you’re supposed to tell me that everything was ok, just like you were saying all along! We spoke for about 20 minutes all the while tears streaming down my face and thoughts of my mother bouncing around my head. He kept telling me that he’s never had a case like this and didn't quite know what to say. His office had already made me an appointment to see an oncologist in Springfield the next day, Dr. K. What a coincidence, she was my mother’s doctor! Before leaving his office, the nurse kept offering to have someone drive me home. Nope, I’m fine – I just need to be alone. I sat in my car for a while thinking what now, how do I tell this to my family and friends. Most of my friends knew about my biopsy and I knew they would be wondering, I didn’t really want to talk to anyone so I sent out a mass text: “Bad news, its cancer”, then I called work and let them know that I wouldn’t be in for a few days. Wow, 2 days before Valentines Day...this one's going to be a great one! (insert sarcasm here)

A lot of cancer survivors will tell you about a freak out moment they had when they were given the news. Strangely, I never had one of those. It was just like, Ok I have cancer, how do I get rid of it, what do I need to do? Telling my dad was the worst! He asked me how the appointment went and all I could do was shake my head and cry. He went with me to my appointment the next day. Dr. K didn’t immediately recognize me when she walked into the exam room, I had only met her a few times at my mother’s appointments. Once she made the connection she was beyond words. We spoke for about an hour and after an exam she suggested a series of more tests including CT scan of chest/abdomen, MUGA scan, MRI of breasts, have a fine needle aspiration of lymph nodes to see if it had spread (which it had), get a tumor marker and port-a-cath inserted and genetic testing to see if I carry the BRCA1/BRCA2 gene mutations (considering my mom’s history). Plan of action: chemo – 8 rounds of AC/T every 14 days plus 1 year of weekly Herceptin, surgery – most likely mastectomy due to the size of the tumor (9.2 cm indicated by the MRI, and that’s after the 1.5 cm they removed for the biopsy!), radiation – 5x a week for 6-7 weeks and 5 years of hormone therapy (an estrogen blocker since my tumor was estrogen receptor positive).

On top of all that I was told that chemo might destroy my ovaries and that I might want to think about getting them removed depending on the results of the genetic testing. I don’t have any children so what about that? I didn't get the best answer: probably unlikely – an estrogen spike while pregnant would increase the chance of recurrence. What about freezing my eggs? Not enough time, we need to start chemo soon and the hormones used to harvest eggs could cause the cancer to spread. F@#k!! Dr. K was great, she took the time to make sure I was clear on everything that she had said and even gave me her email and cell number in case I had any concerns that couldn’t wait until office hours. I left the office thinking, great not only do I have cancer and may have to lose my breast, now I have to think about my hypothetical children too! Do I even want kids? Do I want my ovaries removed? These are things I wasn't prepared to be thinking about.

February was a blur. The next few weeks were filled with appointments, scans and 2nd opinions. I traveled down to Boston to go see the best: the doctors at Dana-Farber. They pretty much said the same that Dr. K had, only they suggested getting a bone scan and head CT plus the chemo drugs and regiment were different: 4 rounds of Taxotere and Carboplatin every 21 days plus Herceptin weekly, then surgery, then 4 more rounds chemo. On my way back home from Boston I called Dr. K and went over what the doctors had said. I asked if she would consider collaborating with them about the chemo and she agreed to call them the next day; I wanted to get treated closer to home and I was comfortable with her. She spoke with them and a few other doctors at Baystate; ultimately we decided on the drugs that Dana-Farber suggested with 6 rounds up front and no chemo after surgery.

Stay tuned for my chemo experience, to be in a later post . . .

Friday, September 5, 2008

My story - part 1 (background)

My story is a long one, and my treatment isn't even over yet!! So, I'll be posting in segments rather than one huge article.

I was diagnosed with breast cancer at age 31, Invasive Ductal Carcinoma stage IIIA, ER+/PR-/Her2+. To accurately tell my story I have to first bring you back 2 years. I had a breast reduction in January 2006. For medical reasons I went from a cup size DD down to a C. After the surgery I had a series of follow-up appointments which were a chore in themselves. I live in MA and had my surgery in NH, 1.5 hrs away from home. Winter driving in New England can be quite exciting!! The surgery went well by medical standards, but if anyone has ever had a breast reduction, you know that your breasts are quite hard after the surgery, VERY ugly and misshapen. I asked if this was normal and I was told by my medical team that with time the tissue would relax and become softer and settle into a more natural shape. I was told to “massage” my breasts frequently to break down any scar tissue. Um, ok.

About 4 months after the surgery my left breast was just about back to “normal” but there was still a large area in my right breast that was still hard. By large I mean it was about 4" from top to bottom between the 7 and 11 o'clock positions. I called my plastic surgeon, Dr. T, to ask if this was normal. She scheduled an appointment for me to go back and see her. “Yes, that’s normal. It can take up to a year after surgery for breast tissue to settle.” Ok, nothing to worry about. She told me to check back in a year if nothing changed.

Fast forward one year - still no change. I called the office back and they told me that Dr. T was leaving the hospital and starting a practice of her own in MA. What luck, now she’s only 30 minutes from me, no 3 hr round trip drive needed! I had to wait a few more months to get an appointment as the practice was not open yet. March 2007, finally get in to see her. She advises me that the area is probably just scar tissue or fibrous breast tissue, but just to be sure she wants me to see a general surgeon. By this time I’m thinking, ok I just have a lumpy boob from surgery, small price to pay for not having anymore neck or back pain as a result from my previously large breasts.

It was October by the time I was able to see a general surgeon, work and life kept getting in the way. In July we found out that after 5 years in remission my mother’s ovarian cancer had returned, so I kept rescheduling my appointments and put her care first. When I finally got to see the surgeon, Dr. O, he backed up what Dr. T had been telling me…fibrous breast tissue or scar tissue as a result of the reduction; it was highly unlikely that it was malignant. He added that the only way to be sure was to do a biopsy but felt like that was invasive and not necessary, but ultimately it was up to me. Not too keen on the idea of being cut open yet again I opted not to have the biopsy. Two doctors have now told me that it’s nothing to worry about, case closed. My mother wanted me to have the biopsy but I was satisfied that both doctors said the same thing, so I told her not to worry.

In December my mother lost her battle with ovarian cancer at the age of 56. The last months were hell for her, she was constantly sick from the chemo and rapidly losing weight. The doctors were not able to administer the chemo on any regular schedule because of low blood counts and so on, so that ultimately gave time for the cancer to spread throughout her entire abdomen. The tumors were so large that they were obstructing her intestines and she decided that enough was enough; she was done with being in constant pain, it was a living hell. She passed on December 9th, two weeks after stopping treatment.

That's about all the time I have for today and feel that this is a good stopping point. I still have not dealt with the loss of my mother because cancer didn't allow me to . . . which you will read in a later post.