An itch that I can't scratch

I suppose this is a sign of healing and I should be glad.

But my incision areas ITCH LIKE CRAZY! It is driving me nuts. I can't scratch it because it is still tender. Besides, that would probably be really bad anyway. The sunburn feeling is still there, but now it is an itchy sunburn. I sure hope it goes away soon. This will seriously drive me insane if it goes on for too long.

On a lighter note, there is a wonderful scarf designer named Laurie Erickson who has a webstore with really upscale hair accessories called France Luxe. She has a program called the "Good Wishes Program" where she will send you a free scarf or head wrap. They are gorgeous. How nice is that? They retail for about $72. A lot of her scarves are silk. I've read that silk can slip off your head. But I think the silk wraps have a band sewn into the inside so it won't slip. I've ordered a scarf/hat band from another company that I'll try with some of my own silk scarves.

We had a great opportunity today to pick the brains of some of this country's smartest oncologists. I mentioned before in my blog that through his work with Prestwick Chemical, he has made contact with a researcher at MD Anderson Cancer Center. MD Anderson, located in Texas, is ranked #1 in cancer care in the country. He specializes in combination therapies for cancer. Anyway, Eric asked him today his opinion on the issue of whether or not I should take the Adriamycin. His associate passed the question onto a senior colleague who specializes in breast cancer oncology. This was his answer:

"...the standard regimen in place in California excludes Adriamycin. There is a preference for the inclusion of Adriamycin here but this is not widely accepted and moreover has not been demonstrated to be beneficial in a controlled study. In short, it is fully reasonable to exclude Adriamycin from his point of view and indeed, many leaders in medical breast medical oncology would argue strongly against using Adriamycin."

So there it is! Confirmation by some of the smartest and cutting edge cancer gurus in America. It makes me feel more settled about it to get this news. I already trusted Dr. P, but this confirmation only makes my esteem grow. So that is the decision. No adriamycin for me.

This is such a God thing! The fact that Eric just "happens to know" people at MD Anderson who work in this field is divine. It's not an accident. I had been praying and asking people to pray that I would get confirmation. Here it is!

My prayer requests:

• That this itching would go away. It is seriously uncomfortable.
• That we would have a nice day tomorrow (Thursday) before chemo begins. We are going to organize Isabelle's room in the morning. I'm trying to get her hooked into the Flylady system. Hopefully if we can work together to get her room into a good state, she can "Fly" from there. The state of her room has been a source of conflict between her and her dad.
• That I be able to sleep. I've been having trouble waking up in the middle of the night and not being able to get back to sleep. A full night of uninterrupted sleep would be nice.
  
• Of course, healing is always a prayer request. That the cancer already be gone. If it isn't, that this chemo regimen would be effective against it.

A little loop that turned to a blessing

I was all set for my physical therapy appointment today. I have a lot of questions about my physical recovery that I was needing answered. When can I pick up Jean-Marc? What is this strange cording under my left arm & armpit? When can I bear weight on my arms? Will I ever be able to do weight training again? Why does my bicep hurt? Are there massages I can do on my arm to help the lymph fluid drain without causing swelling? Am I recovering adequately from the mastectomy?

About an hour before I was set to go, Kaiser called to tell me that the therapist was "out of the office" today. What?! Didn't they know that when they made the appointment 3 weeks ago? They have one physical therapist in San Diego that specializes in lymphedma. Actually there are two, but the one who works here in San Marcos is out on maternity leave until next month. I was very upset. They said I could come in next Tuesday. I told her that I may not be up to it since I will be STARTING CHEMOTHERAPY on Friday. So I now have an appointment on August 31st. So irritating. It's one thing if she was sick or had an emergency. But they didn't say that.

So I was left with an open morning. It is hard for me to have open time like that. For one thing, its hard with the kids, especially Jean-Marc. They need to do something. I was all set to have my mom deal with that this morning. :-) But also, the physical therapy was something that I was going to be able to do to move my recovery along. And POOF it was gone.

It was a hot day here. Summer finally seems to have arrived now that school is around the corner. What was I going to do with the kids? I certainly didn't want to go inland, where it is hotter. I pulled out a book I have called, "Walking San Diego." I opened it up at random and saw

a listing for Torrey Pines State Reserve. I asked Olivier if that was a neat place to visit, since he visited the park in the 4th grade. He got excited and said that it was. So I called up mom and invited her to go with us. (I was going to need help pushing the stroller).

It was my first time visiting this park. I just love San Diego! I've lived here since 1996, and here is yet another gorgeous place within a short distance. We visited

the main lodge first to get maps and get oriented. They had dozens of taxidermied animals and birds. Jean-Marc has this thing about owls. He knows them by their French name, "hibou." They had at least 3 of them in there. So for the rest of the morning, he was on the lookout! Bummer for him that he didn't know what "nocturnal" meant! But he kept looking up into the trees! See that picture above? He's pointing up, saying "hibou! hibou!" (It sounds like E-boo, E-boo)

We went on a couple small walks-one up a series of stairs to the

highest peak, and another one was a 2/3 mile loop. Jean Marc did them both! It was a good thing, since the trails had steps, shallow roots, and a lot of sand. There were several gorgeous vistas overlooking Del Mar. We watched surfers waiting to catch a wave, fish eating birds swooping down to find their meal, and military aircraft on their way to MCAS Miramar. Olivier enjoyed telling us about the plants and things he learned about when there a couple years ago. As mom said, "This is a walk that is good for the soul." And it was. I am so thankful and in awe of the gorgeous beauty of this world that God made for us.

There is a reason for everything, and it was not in God's plan for me to go to physical therapy today. Instead, he wanted to show me part of His creation. We had a fun time with the kids, and they got out and got some exercise too. It was a blessed time. Something that I will remember fondly forever. Of course, cancer was never far from my mind. I have a physical reminder of that fact-I have this itchy sunburn pain that is chronic. I can't lift my own baby. But I also got to hear the roar of the waves, the sound of the seagulls, and watch Jean-Marc discover pine needles! Not a bad mix.

My prayer requests:

• That I don't need the Adriamycin. The more I read, the more confused I get. I've prayed for guidance and wisdom. I just don't know if not taking it will decrease my chances of survival. I just don't know. Right now, my chemo drugs will be cytoxan and taxotere.
• That I not be fearful of chemo. Right now I'm not. But that could change. I want to stay strong mentally.
• That the chemo be effective against any remaining cancer cells in my body.

So its NOT in the genes

I had my follow up appointment today with the genetic counselor to find out the results of my genetic testing.

It was good news for my family and I. I do not have either the BRCA 1 or BRCA 2 gene. At least not with the methodologies available at this time. They don't want to say 100% that I don't have it, but it is about 95% that my cancer is not genetically inherited.

This is good news for me in that I don't have to worry about inheriting ovarian cancer, and it also cuts my risk of reoccurence of breast cancer. On the other hand, because I'm "young" for cancer, my risk of reoccurence goes up simply because I statistically have more years left for cancer to come back.

I'm particularly pleased that this also means that my sister and daughter most likely do not have the gene, either. However, they do have a first degree relative with breast cancer (me), so their chances are higher than the average woman. If you don't know already, those chances are a whopping 1 in 8. So my sister and daughter should be getting a baseline mammogram 10 years before my diagnosis (age 30), and keep a sharp eye on it for life.

On another note, I have made it 27 hours now with NO narcotic pain meds. I still have that sunburn pain in my upper chest. But I realized the pain meds weren't making it totally go away. Were the downsides of being on the meds still worth it? I decided to see if I could go cold turkey make it 24 hours, and with God's help, I did. Eric has looked up the particular medication and said with its half-life, it is out of my system by now. So as long as I don't need to go back on it, I think I may be okay to drive. My range of motion is pretty good. I definitely wanted to be off those meds before chemo next week.

I also signed up to do a 5k walk in October to benefit the American Cancer Society. It's called "Making Strides Against Breast Cancer." I will be in my 3rd week of chemo, with 2 rounds under my belt. I hope I'm up to it physically. Just knowing that its on the calendar will give me a goal to reach.

As part of the walk, I've made the personal goal to raise $1,000 for the American Cancer Society. If you would like to support me in this cause, you can click here to make a donation in any amount. I figured that if everyone I knew or read my blog just donated $5, I would sail over my goal. Of course, you can donate in amounts higher. ;-) I want not only to help raise awareness and funds to help fight breast cancer, but also to give back to an organization that already has given me much.

My prayer requests:

• I need to make a final decision about whether or not to add the adriamycin to my chemo regimen. So wisdom and God's leading in this area would be helpful.
• That this sunburn pain in my upper chest and left arm would decrease and go away. It is worse in the late afternoon and evening.
• That I continue to regain mobility in my surgical areas.

Studies, support and girly stuff

I could either call this day 15, or C minus 14. Whatever. It's another day, and I think its going to be a good one.

Last night, I really focused on my arm stretches. I found a little American Cancer Society booklet with a few more. I'm not just doing the same ones every time, but mixing it up a bit. As long as I'm moving my arms in all directions, stretching the chest wall, I think I'll be in good shape. I was really encouraged last night as to how much I was able to do. I need to try and keep good posture throughout the day-it is so easy to hunch over. I suppose that goes for all of us, doesn't it?

As I expected, Eric came home yesterday and started researching adriamycin. He sent me a few links of some studies on it. I began reading them, but quickly began to feel panic rising in my gut. The bottom line of the study was good-outcomes for patients who left the adriamycin out were better than those who had it. Okay fine. What bothered me was how they described the patients. "Stage I, Stage II, or treatable stage III cancer," "node positive women," and the like were unsettling. It is scary to be in the most severe category in the study. I don't like to think of my life in terms of survival chances.

I've also come to the conclusion that reading cancer support group bulletin boards isn't a good thing for me. It's too bad, because in the past I've found such wonderful support from online support groups. When Olivier was an infant, I found Cleft-talk, a support group for parents with children with cleft lips or palates. Of course, ICAN was a big part of my life when preparing for my post-cesarean births. While I like the information I can glean from the breast cancer support boards, I am sometimes unsettled by other women's stories. Even their "stats." On paper, their stats are "better" than mine. Not all of them, but some. Their tumors were smaller. They were only a stage I or II. Little to no lymph node involvement. Mine feels like a mountain compared to theirs.

I know it could be worse. Heck, it can always be worse, right? At least I'm not a "triple negative." At least my PET scan came back clear and my cancer hasn't spread to my bones or other organs. (Although the chances of evil cancer cells floating around looking for a home is very high.) There are some women who are dealing with those issues as well. But its not a comfort.

I'm thinking a "live" support group will be what I need, rather than reading it online.

Enough of that. Let's get back to why today will be a good day. Mom and I are going to the gym, which always makes me feel better. I found out on Wednesday, that I can do the stair climber as long as I don't use my arms. Some people lean over the machine and rest their weight on their arms. First off, that's cheating! Other than that, I can't put the weight on my arms. So as long as I just climb, I'm good. It's killer, burns tons of calories and makes me sweat. Love it!

Today is also a day of preparations. Isabelle is turning 9 on the 9th. We are going to celebrate her birthday tomorrow, before my mother in law goes home. It works out perfectly because she is leaving early this afternoon for a slumber party for another friend, so we can decorate and surprise her when she gets home tomorrow. Mom is going to bring over her new ice cream maker and we will make home made rocky road ice cream. I get to bake a cake. Fun stuff.

I enjoy all of my kids' birthdays. I especially enjoy Isabelle's. It was such a triumph over adversity. My first homebirth, and my first vaginal birth after cesarean. It made me a stronger woman, and I need to remember those strong times right now as I go through another trial that will make me stronger too.

It is great having a daughter. I can't help but be a little sad that she now has a "family history of breast cancer." At least it makes her more aware of her risk. Bless her heart, I've seen her lift one arm in the air and feel around her armpit like she is doing a breast self exam. I'll find out next week the results of the BRCA genetic tests to see if I carry one of the two known breast cancer genes. Those results will impact her as well. We are looking forward to school clothes shopping-something I'd like to do before my first chemo on the 20th. She got a coupon in the mail from her favorite store, Justice. She's saved it for our special "girls shopping day." I'm hoping that mom, Isabelle and I can hit the mall and engage in some fun shopping therapy and a girls lunch.

My prayer requests today are the same as yesterdays. Thank you so much for your prayers and support! I am blessed by you all!

Turning to the next page

Time marches on. Even during this summer of surprise and turmoil. In some ways, the summer is dragging on. In other ways, it seems like the blink of an eye. Strange.

Today is exactly 2 weeks after my bilateral mastectomy. I was able to scale down the pain medication yesterday to a total of 3. At night, I took one rather than two. I didn't sleep as deeply, and didn't go to sleep right away when I woke up for a "nature break" in the middle of the night. But I did get a full night of sleep. It could have just been psychological, knowing I took less before bed.

I had my appointment with Dr. P today to see what the rest of my treatment is going to look like. Mom and Eric both went with me, and we recorded it just in case we forgot any details. Not only is the support nice, it is good to have another set of eyes/ears and brain in the room. I was very glad that he did not give me a percentage chance of survival, nor did he dwell on the stage of the cancer.

As I expected, Dr. P is recommending 6 rounds of chemotherapy and then a course of radiation, and then hormonal therapy for 5 years afterwards. The radiation is on the menu because I had more than 4 positive lymph nodes. I asked him if I do chemo, doesn't that "kill" all the bad cells? Isn't radiation then overkill? He thought that was a good question. It basically comes down to doing all you can to make sure the cancer is gone. Each treatment attacks it slightly differently. He thought the chemo and hormonal treatment was the most important in my case. I have time to think about radiation. I definitely want to throw all my weapons at this enemy and kick it once.

We do have a decision to make, however. When it comes to the chemo, the traditional cocktail in cases like mine has been a mix of three drugs: taxotere; cytoxan; and adriamycin. There apparently is debate in the oncology community about whether or not adriamycin is really necessary for breast cancer. The camps are about 50/50. The trend seems to be to leave out the adriamycin. There is a clinical trial going on that I am eligible to participate in that will answer that question. Too bad it isn't already answered. Because now I have to decide whether or not to do the chemo with or without adriamycin. I asked Dr. P which camp he was in, because he wasn't pushing one over the other. (A good sign, I think). He said he falls into the side of leaving it out. Adriamycin can cause damage to the heart muscle, and it can also cause leukemia. On the other hand, it is part of the traditional treatment that has put breast cancer survival rates in the 90th percentile.

I trust Dr. P. We definitely are going to think about it more, but for now, he ordered the chemo without the adriamycin. Thank God that Eric knows how to research this stuff. He's already looking into it. If we decide we want the adriamycin all we have to do is call and he'll add it to the mix.

Dr. P also examined me. He said everything looked good. I was glad, because yesterday I noticed some fluid build up on my right chest area. (I don't think I can say breast..its not there anymore.) It was freaky. I would lightly poke it and it would undulate like a water balloon. It wasn't a lot, but it was gross. He said that was very small, and not to worry about it. He asked about my mobility and seemed to be positive about what I have been doing to rehabilitate myself from surgery. I asked him about the pain meds, and he said it was better to be on pain meds and be able to stretch than to be off of them and immobile. He did not seem to think continued use of them was unreasonable. In fact, he almost seemed to encourage me to use it to avoid pain.

He's also prescribing some medications to go along with the chemo. First is dexamethasone. I'm supposed to take that the day before, the day of, and the day after each chemo treatment. The second is Zofran for nausea. The third is the antibiotic Cipro to take around day 5 of the chemo cycle to help ward off infections when my white blood cell count is low. I'm going to put all of these on a calendar so I can keep track of what to take on each day.

The big question is...when does it all start? My first chemo round will be in 2 weeks, on August 20th. After that, its every 3 weeks until my last dose on December 3rd. I go in and see Dr. P the day before the next dose. I also have to have a blood draw the day before each dose. I'm glad they put my Dr. P appointments the day before, because I can just go over to the lab and have the blood draw at the same time.

I'm glad I will be lucid on August 18th. That's a big day for Olivier. We will go over to the middle school and he'll pick up his schedule and books. He'll also get his school picture done, get his student ID and be able to walk around the campus and find his classrooms. I didn't want to be dopey for that. It is really important, and I was going to drag myself out of bed if need be to go with him. I'm glad I won't have to do that! Middle school is a big step and I want to be present for Olivier as much as possible to help him adjust.

My prayer requests:

• That my body continue to heal. I've got 2 weeks to get in as good of shape as I can for chemo. I also hope to be able to sleep as I begin to scale down the pain meds at night.
• For wisdom as we research and make a decision on the adriamyicn.
• That our family treat each other with an extra dose of grace and patience. Isn't it sad we sometimes treat total strangers better than we do those we say we love? This is a tough journey for each of us individually as well as a family. We need continual refilling of the Holy Spirit upon our home and in our lives. We're very leaky!