AQ vs. BC

For years we have been paying for the most expensive PPO plans our employers offer and have never had any accidents, surgeries, or major illnesses. Now that I need it, I am shocked to find out that BlueCross doesn’t cover egg harvesting/freezing for young cancer patients whose eggs will likely be wiped out by chemo. C’mon, not even a portion of it?!!

There is a wonderful program called fertile hope that covers this treatment for women who face cancer, but singles have to make under 75K and couples have to make under 95K. We don’t qualify, because we make over 95K combined (which I totally understand).

I do, however, think this should be covered by insurance, and should not be an elective add-on that employers can choose not to cover. I find it strange that they will pay for breast reconstruction, but they won’t pay to preserve fertility.

I suppose the insurance company considers this to be elective, but I think that is just plain wrong.

I usually spend a lot of time scrutinizing things. Jim likes to tell people about how I spend a long time in the cracker aisle at Whole Foods trying to figure out exactly which crackers will go best with the cheese we got, or how I take items from the WAY back of the refrigerator case to get the freshest one, or how I imagine disaster scenarios to plan ahead for them or to prevent them from happening. Basically, laughing with me about some of my neurotic behavior.

It’s funny, because I have a couple of unrelated friends, who have told me that I remind them of Tina Fey. I never really saw it, but I am reading her book “Bossypants”, and came across a passage that sounds pretty familiar. She describes a ship fire on her honeymoon cruise. I smiled when I read this, recognizing that we do share some similar traits.

“While people around me start to relax, I keep my eyes on the sea, waiting to be rocketed into it on a wave of fire. I’ll be ready for it to happen and that way it won’t happen. It’s a burden, being able to control situations with my hyper-vigilance, but it’s my lot in life.”

Ha, hyper-vigilance? Did she steal that from my first blog post? I thought I made that up.

In very uncharacteristic fashion, from the time of my breast cancer diagnosis, until after surgery, I let go of all my scrutinizing, trusted the doctors I was with, and sailed along. Maybe shock allowed that part of my brain to disengage? However, once it came time to select a medical oncologist, I returned to my old habits of turning over every stone and thinking through every situation (basically driving myself crazy).

Would I go with Dr. Smith at Sibley? He had the cushy office and was so relaxed and human and friendly in our first meeting that he put me at ease. Or would I go with Dr. Isaacs at Georgetown? I had several glowing first hand reviews of Dr. Isaacs, even one friend who said she missed the infusion room sometimes because she loved the nurses so much (name withheld, but you are a nut job)! I was almost sure I would go with Dr. Isaacs even before I met her, but our first meeting was very intense. We were all jammed into a dingy exam room and Georgetown overall was chaotic and overwhelming.

I stewed about it, going back and forth, and then flipped back over to Dr. Smith’s side. I reasoned that they were prescribing the same chemotherapy regimen and his office was more relaxing. All things being equal, better feng shui = better experience. OK, Sibley it is, done. But then I sat on it and let it hang out there a while more.

Almost ready to confirm with Dr. Smith, I got a very timely email from a friend who had been away. Was she too late to weigh in? She had a friend who was a nurse at Georgetown, who had been through breast cancer treatment there. Actually, the timing was unbelievably perfect! My first instinct was Georgetown, and now I was armed with more information to help me make an informed decision that I could feel good about. While I think both Doctors are excellent and there is likely not a bad choice, I did learn that the nursing staff at Georgetown is exemplary. Because Georgetown is a teaching hospital, the students keep everyone on their toes. The chemotherapy protocol is important, but the side effect protocol is just as important. I want to make sure I am well attended to and that I feel supported through this process (the same is probably true with Dr. Smith’s team, but I just didn’t have the first hand reviews to confirm this). I don’t think I am going to miss the infusion room at Georgetown when it’s over, but who knows!

Thanks to everyone. This whole experience is sewn together with great people who have helped me out at the right time. I love you all.

My sister-in-law posted this quote the other day and it really resonated with me.

“You never know what you can do until you have to do it.” ~Betty Ford

My Oncotype number came in at “19,” that is just into the intermediate range. Here is how the results can be interpreted:

• Recurrence Score lower than 18: This suggests you have a low risk of recurrence. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.
• Recurrence Score between 18 and 31: This score suggests you have an “intermediate” risk of recurrence. It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.
• Recurrence Score greater than 31: You have a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

Because I am in the intermediate range, and this study has been conducted primarily for post menopausal women with no lymph node involvement, my doctor and I have decided that chemotherapy is the right next step. After I finish the fertility treatments at Shady Grove to harvest my eggs, I will start chemotherapy. I am still torn as to whether I will do this at Sibley with Dr. Fred Smith or at Georgetown with Dr. Claudine Isaacs. I need to make a final decision this week. They are both recommending the same treatment plan, so it is a matter of the care I will receive during treatment and post treatment and the facilities. I liked both doctors, but I did feel like Georgetown was a pain in the ass to get to and looked very run down. If anyone wants to weigh in on this please do! I have one glowing review for Isaacs at Georgetown and I am going to get some more opinions from the young women’s support group at Sibley tomorrow night.

I work at Threespot (check us out, we are pretty awesome: http://www.threespot.com/)

The folks at Threespot have been bringing me meals, fruit and flowers twice a week since my surgery. It is time I gave a shout out on the blog. I have given individual thanks, but here is a great big THANKS. This isn’t hamburger helper either, Threespot is home to a talented bunch of creative individuals, who it turns out, are also great cooks (lucky me).

I didn’t want to have to single anyone out, but this is too good not to share. One of my fellow spots, Robert, stopped by with his talented partner Richard earlier this week. Richard cultivated this moss garden for me, and it might be one of the best gifts I have ever received. C’mon!

I met with Amanda Kane, a terrific physical therapist who works at Sibley, on Friday. She showed me exercises to get the range of motion back into my arms and shoulders. She said building up slowly is the way to go. The stretching is key and then very light strength building added to it (like 1-2 lb. weights) to lightly work the muscles.

She told me I should get a compression sleeve to wear on the arm that had the lymph nodes removed and that will receive radiation to prevent lymphedema from occurring when I fly (she said some people forgo this, but she thinks it’s a good precaution to take). She also told me I would need to modify yoga in the future, as holding myself in plank position or any position where I support all my body weight on my left side is not a good idea.  Glad I went, I had no idea I was supposed to take extra precautions.

I do want to get into a yoga class and would love to find a teacher that works with younger women who have undergone mastectomony surgery. Amanda reccomended this place to find classes: wellnesscommunitydc.org – I checked it out and it looks like there is a nice gentle yoga and also a pilates class specifically for BC patients that I am going to check out. If anyone knows of anything else let me know.

Having breast cancer at 34 means that I will likely need chemotherapy. The Oncologist wants to start in treatment in early August. Chemotherapy could wipe out some or even all of my eggs. After Chemotherapy, I will need to be on a drug called Tamoxifen for 5 years. While on Tamoxifen, pregnancy is not recommended. This means if I wanted to have a baby after breast cancer, I would be pushing 40, with slim to no chance of having any eggs left.

This makes me a great candidate for trying to extract and freeze my nice healthy 34-year old eggs now. Since I am married, and they have better results with frozen fertilized embryos, why not take it a step further and go for a bunch of frozen embryos?

I met with Dr. Widra at Shady Grove Fertility Clinic on Thursday to discuss my predicament. He agreed that I am the perfect candidate for embryo cryopreservation, but we would need to act fast. I had blood drawn the same day and went home with a giant stack of information, a bunch of prescriptions, and a test kit with needles so that Jim can practice giving me shots in the stomach.

I floated home in the twilight zone that is my current life and set off to see my plastic surgeon to have the extenders in my chest filled with more saline.

PS. In case anyone is wondering, I am going to a young women’s breast cancer support group this Wednesday. It does seem like this house of cards could come crashing down soon, but I really am hanging in there.

I have been having some strange and disturbing dreams lately. This one is strange and disturbing enough that it deserves it’s own blog post.

In the dream, I died, and was reincarnated as a collectible Madame Alexander Doll.

For those of you who collected, or collect Madame Alexander dolls, I apologize in advance. For those of you who haven’t heard of Madame Alexander, they are really creepy dolls that are carefully packed in blue boxes. The collectible ones are too precious to play with. My childhood friend had a closet full of them. They were not to be touched. When she fell asleep, I would check them out and toy with the idea of opening one of them (I never did).

Back to the dream…

Packed carefully inside my blue box, staring out through the hard plastic, I was aware of my surroundings, but was unable to move. I looked around and noticed my stiff posed arms and legs. My worst nightmare had come true, I was buried alive inside a box, among a sea of boxes, in a warehouse. What was worse, was that I knew I was a Madame Alexander doll, and would remain packed inside this box forever.

I woke up in a panic. It took a few hours to shake the creepy feeling.

Following surgery, I set up meetings with 2 Medical Oncologists and 1 Radiation Oncologist. The question on everyone’s mind, especially mine, is what’s next?

The final results from my pathology look like this (you might only understand this if you had breast cancer or know someone who has):

• Stage IB: T0 or T1, N1mi, M0: (on 0-IV scale) Invasive Ductal Carcinoma (IDC) non-necrotic tumor is 1.3 cm with a .5mm micrometastases in 1 of 3 sentinel lymph nodes (the other 2 nodes tested were clear). The cancer has not spread to distant sites.
• Grade 2 (on 1-3 scale – intermediate/moderate differentiation)
• ER Positive (yes– 100%)/PR Positive (yes – 60%)
• HER2 (negative)
• BRCA1, BRCA2 (negative)

My first meeting is with Dr. Fred Smith, a very highly regarded Medical Oncologist in the DC area. Dr. Smith has been practicing for 30 years. He has a very handsome office in Chevy Chase. It’s the kind of office that makes you feel like “Hey maybe I don’t have cancer!” The nurse came in to take my vitals. My pulse clocked in at 130, woa! My ability to look calm and collected on the outside, yet be completely freaking out on the inside is actually quite impressive. Dr. Smith walked through the door and shook my hand. He is a soft spoken man with a calm demeanor. He puts me at ease. He recommends having my tumor sent for further genetic testing (an Oncotype DX analysis) to see what the “fingerprint” of my tumor looks like. This newer test gives more insight into whether or not your particular cancer will respond to chemotherapy. While the study is still new, it is well verified that if you come back with a score lower than 5 you definitely will not benefit from chemotherapy, while if you score over 25 you definitely will. OK, so there is a chance I might not need chemo if the score is really low? Woo hooo, I like this.

My second meeting is with Dr. Victoria Croog. Dr. Croog is a very sharp, young Harvard Medical School grad, who did her residency at Sloan Kettering in NYC. Dr. Croog’s specialty is Radiology. Dr. Croog walks in smiling and shaking her head a little bit. She marvels at how early I caught this cancer and explains that she is really torn, but feels like maybe I don’t need radiation. I like Dr. Croog right away. Her hands are almost as small as mine (why this is important to note, I don’t know, but I wanted to.)

I am feeling pretty proud of myself at this point. Maybe if the Oncotype score comes back really low, I won’t need chemo and now maybe I won’t need radiation either! I am the master of my domain!

Then Dr. Croog furrows her brow as she combs through the detail pages that support the pathologists summary. “Hmmm, the detailed report doesn’t totally correlate to the summary for me.” Dr. Croog continued to study my chart looking perplexed. “What is this 6 cm pink fleshy mass they describe at 12 o’clock?” Dr. Croog continues, “I would like to get some clarification on this report, I am concerned about making a final call on treatment before I fully understand this report.” Um, yes, now I am concerned too!

Dr. Croog explained that Sibley actually selected my case to be discussed at the “Tumor Board” the next day where all the surgeons, medical oncologists, pathologists and radiation oncologists would gather to review my case and have a discussion about how I should be treated. It seems I have caught this early, but is it so early that I could really avoid chemotherapy and/or radiation? Dr. Croog said she would call me the next day to fill me in on what they discuss and that she would  have clarification on the pathology report. I leave the office feeling like my pulse might be above 200.

The next day, Dr. Croog gave me a call as promised. She explained to me that they amended my pathology report to include some additional details that were left out in the summary. The amendment now clearly explains that there was also a large amount of disease in the upper outer quadrant of the left breast. This disease has now been described to me as mostly  “high-grade, aggressive necrotic Ductal Carcinoma In-Situ “DCIS”, (stage 0 breast cancer) and at 12 o’clock there were also 2 micro invasions of less than 1mm of Invasive Ductal Carcinoma “IDC”. This area of DCIS had narrower margins achieved in surgery than the area around the 1.3 cm tumor.

Given the new information, the tumor board at Sibley was split on whether they would recommend additional surgery to do a full axillary dissection of the nodes and to try to achieve closer margins around the DCIS, or whether they would skip further surgery and opt for radiation to take care of the close margins plus the sentinel node involvement.

Bubble number one is officially burst. Radiation treatment is recommended. It doesn’t come without risk either, as the left chest wall will need to be radiated, and my heart will absorb some of this radiation. Dr. Croog explained that she will do her best to shield the heart during treatment. Treatment will consist of 30 treatments, 5 days on, 2 days off. The sessions only last about 30 min. Radiation will follow chemotherapy.

My third appointment is with Dr. Claudine Isaacs, a Medical Oncologist at Georgetown. She and Dr. Smith are considered to be the two real experts in the DC area. Dr. Isaacs is curious to hear what Dr. Smith recommended. She concurred that if the Oncotype comes back very low, that we will not need to do chemo, but she thinks the likelihood of getting a score that low is so slim that she wouldn’t have even ordered the test.

Bubble number 2 burst? Not officially, but likely. We will still wait for that Oncotype score, but it now sounds very unlikely that I will avoid Chemotherapy. Isaacs and Smith both recommend the same treatment plan if the Oncotype score is not low. Taxotere and Cyclophosphamide, “TC”- 4 sessions spaced 3 weeks apart. Dr. Isaacs explained that I will lose my hair and I might lose most or all of my eggs. She suggested I get in to see a fertility specialist asap to have my eggs extracted. Let the good times roll.

(Side note: I have been wearing tennis outfits to my doctors appointments. I have a good friend who swears that when you are sick, if you change into sweat pants or pajamas you will get sicker. I decided to apply this logic with my own twist, and thought that a tennis outfit would be a good way to feel and look really well. The nurse even asked me on my way in to see Dr. Croog, “You didn’t just come from playing tennis did you?” I explained my philosophy to her, she laughed and said, “Well you look great!” This is exactly what I wanted to hear, if the nurses and doctors think I look great maybe they will go lighter on my treatment. I know I must sound a little nuts at this point.)

On Monday, I went in for an appointment with my Plastic Surgeon. I had been monitoring the fluid coming out of my Jackson Pratt drains and had been keeping a careful record. I knew the fluid levels were low enough that they could come out, but I still worried that for some reason she would tell me they had to stay in.

I actually had a dream the night before that I couldn’t find a ride to the appointment, (ridiculous, because both my parents have been picking me up and going to every appointment with me, equipped with steno pads and carefully prepared questions to ask the Doctors), so in the dream, I took several buses to get to Dr. Huang’s office, only to realize that I had forgotten to take my drainage record chart with me. She scolded me, and said I would have to wait another week to take them out because of my negligence. I woke up in a serious panic.

Luckily, that isn’t what went down, but here is what did happen. There are not just a few inches of cord inside your body, its all coiled in there. As my friends mom so gracefully described it to me, “It will feel like pulling out a very long tampon.” I told the doctor about this analogy and she agreed that it would feel a little like that, although she said she wouldn’t continue to use that analogy with her other patients. She pulled the drains out, and surprisingly just put gauze and tape over them, saying the gaping holes would just magically close on their own (I was thinking “Um are you sure about that?” But it turns out she was right…she probably has done this a few times). The next step was to fill the extenders in my chest with saline. I left the office a full cup size bigger than when I walked in. I have to say, leaving the office with the drains out and breasts that were larger than a pre-pubescent girl’s was pretty damn nice. I floated on cloud nine the rest of the day. I crashed later that evening when the painful effects of stretching the skin like that kicked in, but hey the drains were still out.

Starting to feel a little more human and self sufficient today. I am washing my own hair and clearing the fluid from the “Jackson Pratt” drains protruding from under my armpits myself (wtf, sorry, but this is the worst part right now, the look and feel of these drains is so off-the-charts gross. OK, I think this will be my last mention of these drains until they come out).

I also took a walk around the block with Andrea and Ty today. It was the first real walk I have taken outside since surgery. I felt a little like Edward Scissorhands with my arms hanging off to the sides in an awkward dangling motion. My brother said my body language looks like I am ready to challenge anyone I see to a fight, “Are you lookin’ at me? You want a piece of this? Let’s go!”

I have decided I am going to try to get some one-on-one sessions with a physical therapist/yoga instructor when I am well enough. I want to learn how to stretch and align my posture with my new body (they moved my chest muscles during surgery, so everything feels off). I also want to make a resolution to make more of a commitment to yoga and meditation. Namaste.