Highly Curable

Never have two words sounded so good! This was from Dr. Christopher Perkins who is head of California Oncology, where Britt will be receiving her Chemo, Herceptin and hormonal treatments. Although he is based in Fresno, he wanted to come to the Turlock office yesterday to meet with Britt and I and review our case. His specialty is Breast Cancer and he was very interested in Britt's case. For what seems like the first time in this whole ordeal we were able to actually review the entire case from diagnosis to this point, and it was really helpful. He also laid out for us our plan of treatment from start (Chemo Therapy) to finish (Hormone Therapy). Although we had been very scared over the past few days about the upgrading to Stage III and the fact the cancer seemed very aggressive, he pointed out that when they label Stage III as having a 50% recurrence rate, that is a somewhat misleading number, in that it encompasses all cases, without regards to treatments.

Britt's case is unique and "highly curable" because her cancer is Estrogen Receptive, and has Her2 positive. This occurs in only about 20% of breast cancer cases, and actually gives us two paths of treatments. If you are not very medically inclined, I am going to try and explain these two points as best I can. Estrogen produced naturally in the body has been linked to Breast Cancer in the body, and several studies have showed that the blocking of the Estrogen can stop new formation of tumors, and the spread of the disease. The second factor the presence of the Her2 gene, is both good and bad news. The bad news is that this is what makes the cancer aggressive. The good news is that the drug Herceptin is for use with this. Herceptin responds to the presence of the Her2 gene in a cancer cell, binding itself to it, and essentially smothering it, as well as attracting white blood cells to the cancer cells to kill them. The combination of these two therapies, mean the chance for no relapse in the next 5 years is higher than 85%.

So the new treatment plan is as follows, Chemo Therapy for the next 18 weeks, with Herceptin given concurrently for a year. Surgery will follow chemo, and radiation will follow the surgery, and finally hormone treatments (with the drug Tamoxifan) for 5 years.

We are truly on a path now, and that is of course very rewarding. Although there are of course no guarantees, we feel good about our odds. Britt and I are very thankful to all of our friends and family who whether near or far have been there to provide support, whether it is to send a e-mail, card, enter the Race for the Cure, drop off a meal, or any of the other myriad expressions of support we have received it has been remarkable to realize the support we have out there.

We'll keep you posted.

Brian

First day of chemo

Thank you for the response to our crazy news, everyone we talked to was as shocked as we were and at least we know our response was quite justified. Shock, anger, disbelief. I warn you, this is a long blog entry for me. I hope everyone out there in cyber land is able to get these entry's, if not, cut and paste them to friends who aren't so computer savvy.

Brian did a good job explaining the basic reasons for the strategy shift away from surgery to Chemo but a question that we keep getting is: Why didn't they go with this strategy earlier?? And to be honest we have not gotten a great answer for that one either. If this drug is so great then why not start it right away? There are a lot of reasons but the best explanation is, the Dr.s knew the cancer had spread to the lymphnode and they knew chemo/radiation would got those spots once we finished with any surgery we could do. It wasn't like they didn't know they were there, they just put a higher priority on the tumors they found on the breast. The usual direction is surgery, chemo then radiation if necessary. When the new information came back and the "hot spots" on the PET scan came back more intense, it was actually admirable
that the surgeon stood up and forced the new direction.

What sucked so bad (sorry, do children read this?) for me was our bags were packed for the surgery. I was geared up for the pain recovery, etc and for three nights away and frankly looking forward to catching up on a good book, magazine or movies with out kids. Brian and I were even considering going to an grown up movie (not a kiddie movie) by our selves that night before surgery. Then the DR came into the room and her first words were "You aren't going to be very happy with what I have to say". Let's just say I was livid and I am sick of holding my tongue with DR's so I let her have it. First I was most pissed that they did not call me ahead of time to give me a glimmer of a hint that things may be changing (up until that point I had avoided that kind of shock since way back in June when I found out I needed to have chemo and lose my hair for the first time. I hate the surprise factor in a DR. office setting when only wearing a hospital robe. It feels so vulnerable. (As it turns out, she only got this news on Friday and worked over the weekend and into Monday morning to get answers from five other Drs including the head of the Tumor Board who reviews all the special cases, she did do her best but still a phone call would have been nice.)

Second, I was furious that I had been messing around with all these F***in appts all summer when this thing was growing bigger. Yes, I did drop an F-bomb, Brian was quite proud...HAHA The extra time we took to confirm the additional spots on my breast were cancer and try save my breast may have worked against me or it my be for the best, it allowed us to have enough time to pass to allow us to see the dramatic changes and make adjustments quickly. We could go back and forth about what I could have done, what this DR or that DR could have said or done but the strategy before was a good one and the strategy now is a good one too anything else is futile. So we just have to overcome the mental part of it. Brian was WONDERFUL on Monday and he was wonderful again for my first day of Chemo today. (see below). He was so strong and said all the right things and was gentle and helpful and he drove about 8 hours on Monday. We were at the Stanford office sorting this out for about 3 hours and then they booked us a meeting with our Oncologist the same afternoon and we drove all the way over there to meet with him and get plans set. Palo Alto (Stanford) is near the Coast of CA and we drove up to Oakland and then over mountains and down to the Central Valley to get to the next appt by 4:00. We were exhausted but, boy was Paige happy to see us when we got home, she thought she would not see us for three nights. It was a nice surprise.

Tues was an odd day, I kind of just wandered around the house with very little do to. I had wrapped up most things, packed, cleaned off my desk and I didn't want to start anything new because I knew I had Chemo on Weds. Went over to a friend's house to join her on the pre-organized play date. Brian grieved a bit that night, I worry that he is having a hard time handling it all. The emotional strain is not just on me. Of course he is strong but we all have that moment of weakness and he needs that support as well.

My grieving was this morning, two days after the switcher-u. I was at the mirror doing my hair and makeup in the morning. Sometimes when you really look at your self, for me, all this self pity and stress rose up and I needed a good cry. I looked at myself and my biggest fear is that I will be fighting re-occurrences my whole life. I fear the Herceptin won't work and they won't go way. I was feeling low and I knew that is not a good place to be as I head into my first Chemo treatment. Brian quickly went to the web and gathered information on this famous Herceptin Drug. And there is so much good news about this drug that it bolstered my spirits. I want to research successful case studies to hear other people's successes and how Herceptin and Chemo helped them.

So we were off to the appt, I was anxious, not even allowing myself to believe I was starting Chemo today, maybe things changed again? I would believe it when I was sitting in the chair with the IV in my arm. Months ago I had a Chemical port installed in my upper chest on the right side away from the affected breast. Some of you who saw me this summer might recognized it. (If you are queasy, then skip reading the next couple sentences). It is a round unit that sits right under the skin so nothing is sticking out or anything but with bathing suits and certain tops you can see it the bulge. Anyway, this thing has been my nemesis all summer, 4 months of tests and talking, never needed the chem port at all. Basically the port has tubes that link directly to your heart valves and blood stream so the drugs are administered more effectively and with out having to use thinner more fragile veins on your arms and wrists.

So I get to the medical room, it is a large room with two RN's administering the medicine and watching to be sure everything is going smoothly. There were about 4 or 5 other patients and their loved ones there all with IV's of bags of liquid. I got very intimidated and anxious like I was joining the class late and did not know anyone and didn't know what to do, so Brian and I beelined it for the corner, maximum privacy. The very nice Nurse goes to install the IV in my handy dandy Chem port and I feel searing pain and pressure when she flushes it with saline. There was a sharp pain and then aches in my shoulder muscle. The DR came over and quickly determine if there is pain then the unit can not be used because if there is a leak or if is not functioning correctly then the medicine will not go where it is supposed to go and won't be effective. GREAT, JUST ONE MORE THING TO GO WRONG?!!!! AFTER FOUR MONTHS, THE THING IS BROKEN!!! I was already anxious and because of my bad mood this morning the tears came again right in the big room with all the patients, thank God we were in the corner. I didn't care, I was just so annoyed. Anyway, I have to go tommarrow to get a dye procedure through it to see if I can use it or I need it replaced. More on that later.

So I calmed down and they gave me an IV through my arm veins and finally got things going. So I sit in a relatively comfy lounge chair with pillows and blankets and sit there while they hang small bags of liquid and it drip drip drips into me. The first administered bag was a large dose of Bendryl (directly into my blood stream), that made me so sleepy and woozy but Brian had just left to get me lunch and he got me a Greek Gyro from our favorite place so I stayed awake long enough for him to bring lunch. Then I think I slept after that. I read my magazine, I watched some Seinfeld TV episodes on our DVD player, Brian was there in a less comfortable chair playing his portable video game and fiddled on his Cell phone. It is a slow process and not painful and the staff come back many times so about 5 hours later I was done.

I relate the whole Chemo experience to traveling across country in an airplane all day. My chair is some what comfortable but certainly not a barco lounger or anything, and it does not quite recline far enough back to really allow you to fall asleep, I have blankets and pillows that aren't all that comfortable, the air first was cold then it was hot, I only got up twice to go to the restroom and stretched once I got up. My head felt groggy like I haven't slept all night and I was constantly monitoring my stomach to see if I felt nauseous. Overall it wasn't the worst thing in the world, I have flown in more miserable situations many times. You get through it. Poor Brian travels like that every week.

I have a total of 6 sessions every 3 weeks, so one down 5 to go. The medicine goes all through my body but as that wears off along with anti-nausea medicine, around day three is when I would start to be dehydrated, and spike a possible fever. I thought I would be at my worst on day one, but I guess we will see what day 2 brings. Friends have cooked meals and they have been a welcome sight on a day like today. Even though Brian is the cook in our house, he needs a break too.

I hope I am not over the top with the ghastly details. Sorry,

Paige and Erin and Mrs. K are doing well. Paige wants to type on the blog too so if you get an entry that is all over the place you will know it is from Paige. Paige had three play dates with week so that she had something fun to do this week and my friends were so kind to step up and cook meals and pick up kids. Thank you again, Paige seems to be handling things well. She does mention breast cancer often, which is good and her teacher is on the lookout for anxiety or distraction at school. Erin is oblivious to the situation, thank God, the only thing Gram noticed from her when we are away is that she walks around the house like "where are my parents??", Brian's Mom is geared up and ready to take it on and I feel very comfortable leaving it in her good hands while I deal with this.

Lastly, I want to leave on a positive note, as I always try to do, Today marked the day that I got my first shot at cancer. No more talking about or testing for it. Cancer had its chance to grow and to do its thing and today was the first day I stopped it!! Take that !!!

Thank you to all and I love you for reading our blog and following our lives, we feel so blessed to have all the love in our live.

Britt

Change Of Plans

Unbelievable, that is really all I can say. Just when you think one thing, this disease throws you for a big loop. During a routine pre-operative Pet/CT scan, the doctors discovered that the cancer had spread to lymph nodes below Britt's Pectoral Muscle, and to one of the nodes below her chest plate. These nodes are very difficult to remove, and the surgery to remove them runs the risk of Lymph edema (severe swelling of the arm), loss of the use of her left arm, or worst case scenario, damage to a major artery that runs from the chest to the arm. Worse the appearance of these "hot" nodes means the form of cancer we are dealing with is very aggressive, she has now been labeled Stage III. The positives are that it is still limited to the left chest area, and her cancer appears to be receptive to treatment with Herceptin, a wonder drug in the treatment of Cancer.

The opinion of the Doctors at Stanford is that we postpone surgery, and immediately start Chemotherapy, and Herceptin. The goal is to either eliminate the cancer in these nodes, or at least reduce to where they can attack it with radiation, and to stop the spread of the disease. As one of our Doctors put it yesterday, we need to deal with the distant (lymph nodes) disease, before we can deal with the local disease (Breast). To say that this news was devastating would be an understatement. It took a while for Britt to wrap her arms around the idea of a Mastectomy, but she had come to terms with it. We went to Stanford yesterday fully prepared for that course of action both mentally and emotionally. The new course of action means immediate chemotherapy (she starts tomorrow), and in 18 weeks they will take new MRIs and Pet/CT scans to determine if the Herceptin has worked.

One of the strange things you learn in all of this, is that having Cancer means not having control, right now the disease has total control, and no matter how we try and wrest that control back, the disease is always there to remind you who is in charge.

Brian

Schedule

Good Morning everyone,
Well this is the big week. I wanted to give everyone a schedule of what is going to be happening so you have a pretty good idea of the timing. Britt and I will be leaving for Palo Alto later this morning, we have three pre-op appointments, the Oncology Surgeon, the reconstructive Surgeon and the Anesthesiologist (spell check helped with that one). From there we will have to stay over tonight because Britt's surgery is very early in the AM. They are going to do another procedure first thing in the morning in which they will place a small pin in one of the lymph nodes that is of concern for them, this way they can identify it with the MRI, to ensure they remove it. The anticipate being wrapped up by about early to mid afternoon on Tuesday. From there it will be on to recovery, and hopefully to her room at the Hospital. If all goes well we should be discharged by Thursday. The girls are doing well, although I'm sure Paige will be very anxious over the next couple of days. Britt and I are ready for the week, both of us are very happy to be "taking the fight" to the cancer. We received some very sad news on Saturday when we learned that Cathy Carli, the wife of Pietra Santa's Winemaker Alessio, and a friend of ours was killed in a car accident. Like us they had two little girls, and it puts into perspective both the fragility of our existence, and the opportunity presented to us to be able to receive the treatment that will ensure Britt's complete recovery. So please when you think of us, say a prayer for Alessio and his family as they go through this difficult time. I will update often, as news becomes available.

Gearing up

First off, I want to send you an internet link of my cousin's wife, Susie Heinold who is running a "Race for the Cure" Event raising money for the cause and for little ole' me. That is so cool.

http://race.komenlowcountry.org/site/TR?pg=personal&fr_id=1030&px=1186541

One of the things I have found with the diagnosis of cancer is how many other people have been touched directly by this disease, so many people have shared their story or that of a loved one. 1 in 8 women will be diagnosed with Breast cancer, and as a Mom of two girls, I want to see a cure so that they won't face the same challenges and choices I have faced. If you can donate to this wonderful cause, we thank you. We especially want to thank Susie for running this race.

As I head closer to the date of my surgery, I am in good spirits. Things seem to be moving along and I have a clear course of action ahead of me. An arduous plan is better than no plan. I feel like I am planning to have a baby.. (HAHA) except I am not coming home with a bundle of joy and I won't be waken up every two hours.=) I am packing my bag, wrapping up house and family affairs, thinking of all the things I will not want to deal with later. It is surreal.

I have been going to the gym trying to get in shape for this whole thing. I was kind of feeling sorry for myself the other day, I looked around at the ladies in my class and thought, they look so normal and I look normal too but I am not normal, I have this horrible thing growing in me that I have to get out. I view going to the gym in terms of: before and after, what am I going to wear? Am I going to have the energy to go? What will I wear on my head? I view a lot of things like that now. I know it will pass and it will be better, but in the short term this thing changes everything.

I am out shopping for wigs in preparation for chemo. Even though I was really dreading this part, once I got into it, it was a little fun, (not a lot of fun, but a little). I can go darker, lighter, shorter and longer, anytime I want. The insurance is covering it and I received a wig to "get me started" from the American Cancer Society. They are a wonderful resource.

I am also gearing up for the fall Season, which is traditionally a very busy season for our family, with my birthday, Oct 30th, Brian's, Nov 16th and Paige's Birthday Nov 17th, I am usually swamped let alone Thanksgiving right behind it. So I am already planning for costumes and birthday presents. Who would have thought that cancer would force me to become so organized?

I hope that everyone is hanging in with support and thoughts for me, I know that people get busy and it is hard to keep me in your everyday thoughts. Just know that I love to hear from you and really feel good that you all care so much.

Britt

Sept 23rd, M Day

Looks like I am set for Sept 23rd for my surgery. Wish me luck. I will recover in the hospital for a couple days and then continue recovery at home for the next couple weeks until I begin Chemotherapy. The surgeon will remove the tissue and then a reconstruction surgeon follow right after and will give me a temporary breast until I am ready to have final reconstruction surgery at a later date. A delay is required, I won't go into the details but basically, I will need one more final surgery after it is all said and done to give me a permanent breast and even get a lift on the right side to match the new one. So lucky me, I will look 20 something into my 80's. HAHA That's all for now.