Friday, August 26, 2011

So How is YOUR week going?

My week started with a 5.9 magnitude earthquake centered about 40 miles from where I live outside of Richmond, Virginia. Talk about scary! I thought our building had exploded. We all ran outside and realized it had been an earthquake. Unbelieveable.

Luckily, there was no damage to our house or any local infrastructure. We continued to feel aftershocks throughout the next day or so but nothing major. I don't know how people in California deal with earthquakes. It's extremely unnerving to think the building you are in could come down all around you at any time.

After surviving the earthquake, it was time for my first round of chemo. I went in at 8:30 AM to receive two drugs: Taxotere and Cytoxan. Long story short - the infusion went well and so far, I am feeling great. Of course I realize that I will probably not feel this good for very much longer. I took my last dose of decadron last night. This is the steroid that helps alleviate any nausea and also gives you a ton of energy. I was kind of like the Energizer Bunny for the last three days. But I am starting to feel a little tired this afternoon.

I went in and had my Neulasta injection yesterday afternoon. Again, no side effects or bone pain. I'm feeling pretty good.

Now we have Hurricane Irene heading directly toward the mid-Atlantic coast. I am just hoping it avoids the Richmond area so we don't have any structural or tree damage. I am sure we'll lose power for awhile but my husband has all the supplies ready at home. He's the BEST!

All for now...

Monday, August 22, 2011

Girls' Weekend in Winter Park, Florida

I have a lot of catching up to do... first things first.

I flew down to Winter Park, Florida to meet up with my two BFFs Ronni and Carolyn. I wanted a nice weekend away before starting chemo and losing my hair. Carolyn just bought a gorgeous condo in downtown Winter Park within walking distance to all the nice shopping and restaurants.
Here is a quick run down of the weekend activities:

  • We took the Winter Park boat tour and saw all the lovely mansions on the lakes.

  • We walked to the Morse Museum of American Art and saw the astounding Tiffany Exhibit - the largest collection of Tiffany artwork in the United States.

  • We laughed, drank wine, watched "Up in the Air" with George Clooney.

  • We went out to see a great rock-n-roll band called My Generation.
No weekend would be complete without someone earning a nickname. This weekend, it was my turn: The Queen. For some reason, Ronni and Carolyn thought I was getting a little bossy on Friday night after a few glasses of wine. Not sure whatever gave them that impression! (haha!)

Carolyn offered to make pizza when we got home from the wine bar on Friday night. I opted to stretch out in her lounge chair (dubbed The Queen's Throne) and just barked orders: "More pizza! Make another one!"

As Carolyn said: "The Queen wants more pizza! Chop! Chop!" She scurried off into the kitchen where much button-pushing and microwaving was heard.

Poor Ronni... I was chowing down on pizza and didn't even share with her until the last corner piece. She was practically begging like a hungry dog. I thought she had her own pizza - I was WRONG! But we all laughed about it the next day and they continued to call me the Queen throughout the weekend.

It was the best girls' weekend and exactly what I need before starting chemo.
Love you, ladies!

Wednesday, August 17, 2011

New Haircut

Excuse the lousy close up shot taken from my iPhone in the ladies' room the other week. But I wanted to share a quick picture of my new short haircut. It's not extreme and I actually really like it.

I figured it will be easier to maintain as I wait for my hair to completely fall out. Next hairdo picture will be a buzz cut!

MUGA scan and chemo start date

I had my MUGA scan on Monday as a pre-requisite test for me to start chemotherapy. The MUGA scan takes a look at the heart muscle and its ability to pump blood. I passed with flying colors and am scheduled to start chemotherapy next week on Wednesday.

I bought a very informative book over the weekend called "The Chemotherapy Survival Guide" by Judith McKay. While I know a lot about chemo and what to expect after watching my mother go through it, I still picked up a few tidbits that were helpful to me.

The first thing I am doing to prepare for chemo is getting my hair cut short. I am not buzzing it (yet). I am just getting it cut short so that when it starts to fall out, it will be easier to buzz -- at least that is my hope. And who knows... maybe it won't fall out but only get thin. If that is the case, then it will look better short.

Who am I trying to kid? It's going to fall out BIG TIME. As I told my sister, my hair falls out at the first sign of stress or hormonal imbalance. I know that as soon as chemo hits my follicles, my hair is going to practically FLY out of my head (and other places)! I hope I am ready.

The next thing I am doing is visiting my girlfriends in Florida. I am flying to Orlando tomorrow and spending a long weekend with Carolyn and Ronni. The trip is long overdue and cancer/chemo is once again a great motivator. I am really looking forward to seeing Carolyn's new condo and spending time catching up. I have a feeling there will be a lot of cackling! hehe!

After I get back on Sunday, I plan to spend some time on Monday and Tuesday stocking up my pantry and freezer. I expect I will feel like garbage for a few days after chemo.

I am hoping the Wednesday infusion schedule works for me. I figure I can get my chemo on Wednesday mornings, spend Wednesday afternoons at home resting and then possibly come in to work on Thursdays after my Neulasta shot. If I can't make it to the office, then I can work from home on Thursday. I figure I will feel terrible on Friday, Saturday and Sunday. My hope is that I can return to work on Monday, even if it means working from home.

My oncologist said I will feel pretty lousy over the weekends then start to come back to life the following week. She said I will then hit another valley on days 7 - 9 where I will feel extremely fatigued. By the third week I should start to recover -- just in time for the next round of chemo.

This should be my routine for the next four months. Good times!

My husband is concerned that I may try to do too much when I should be recovering. He is probably right. I just need to play it by ear and stay home and rest if that's what I need to do. Luckily, my boss is flexible and I know that I won't be given any projects that require a huge commitment or drop dead date.

Geez. What a horrible phrase - "Drop Dead Date" - I use that all the time!

Note to all you managers or leaders of people out there. If you have an employee who is going through a life-threatening illness, refrain from using the term "drop dead date" to discuss a project's due date. Oy!

Okay... where was I?

Work. Chemo. Rest. Obviously, this is a learn-as-you-go situation. I'm learning. And I'm going!

Monday, August 15, 2011

Medical bills

The medical bills just keep rolling in. I cannot even begin to explain how many of those white envelopes appear in our mailbox every day. I literally have a PILE of bills and insurance claims sitting on my desk.

And I have been avoiding looking at any of them. When you have cancer and are struggling to remain positive, the last thing you want to do is try to figure out your insurance claims and pay your outstanding medical bills. At least, that is the last thing that I want to do. Other folks may pay their bills right on time. Not me. I am a procrastinator extraordinaire!

I finally sorted through it all yesterday. And it was very unpleasant. Long story short... my annual out-of-pocket expense is $6000 for in network providers and $9000 for out of network providers. At the beginning of all this mess, I thought I had a $3000 deductible and that my insurance would pick up the rest once I hit that magic number. WRONG.

After I hit my $3000 deductible (which took all of about four doctor visits and procedures), my insurance pays 80% and I pay the remaining 20% up to ANOTHER $3000. That's where I get the magic number of $6000. But that's not all.

If I see someone who is out-of-network, my annual out-of-pocket goes up to $9000. Now is that $9000 separate from the $6000 or is it another $3000 tacked on to the $6000? Questions, questions.

That means when this year is all said and done, I will have paid $6000 PLUS whatever I have incurred out of network to the tune of either $9000 or $15,000. Lovely.

I am quickly learning that just because a doctor accepts my insurance (Anthem), it does not mean he or she is "in network." It means he accepts my insurance and that's it. I should know better.

But when you have cancer and you are trying to stay positive, you want to be seen by the best doctors in town regardless of in-network or out-of-network. At least, that is how I have approached my healthcare. I want the very best people working on me even if that means I have to go to M.D. Anderson or Sloan-Kettering. Period.

And all things considered, I am pretty lucky. I have savings that I can use to pay all these bills. And I have insurance - as lousy as it seems right now it's better than not having insurance. So I will quite my bitching and moaning and just pay my bills. Tomorrow.

Saturday, August 13, 2011

Who is your cancer survivor role model?

When I was first diagnosed with breast cancer, I scoured the Internet to find examples of people who had what I had. I wanted to know the extent of their breast cancer, what they did for treatment and most importantly, how they were doing today. I guess I just needed some reassurance.

The first person who came to mind was Christina Applegate. Here is a young woman who made the very dramatic decision to undergo a bilateral mastectomy even though she only had early stage breast cancer and no lymph node involvement. Her initial protocol was a lumpectomy and radiation. She also tested positive for the BRCA gene and watched her mother fight breast cancer twice.

Christina decided she didn't want to deal with breast cancer her entire life like her mother had done. She also didn't want to expose her body to chemo or radiation. And she wanted to start a family. Now that I know more about breast cancer, I can understand why someone like Christina would want to avoid removal of her ovaries and hormonal therapy.

Christina's situation was a little different from mine so I started looking for women who had undergone a lumpectomy and radiation only. I found Jaclyn Smith and Sheryl Crow.

Both of these beautiful women had similar diagnoses as me. I thought: "If they can do it, I can do it,too!"

Sheryl Crow went on to adopt her two sons after cancer. Both women are stellar examples of the importance of early detection and how you can move on after a lumpectomy and radiation.

Keeping these women in mind, I went ahead with my lumpectomy feeling confident I would have the same outcome. But after my surgery, my doctor found a tumor in my sentinel lymph node and I learned I would need chemo along with radiation. I need a new role model.

That is when I read about the actress Maura Tierney. Maura is just a few months younger than me and had a similar diagnosis. She underwent a single mastectomy, chemo and radiation. During her treatments, she put her career on hold and gave up her role in the NBC series "Parenthood."

Now almost two years later, Maura has finished her treatments and has returned to acting. She appeared on the TV series "Rescue Me" playing Denis Leary's girlfriend. The show's writers added breast cancer into the her character's storyline and Maura played the part with her own bald head exposed.

Maura's hair has started to grow back beautifully. I hope that I will be as brave as Maura and hope my hair comes back just as gorgeous!

Friday, August 12, 2011

Decision time... participate in a clinical trial or not?

When I met with my oncologist on August 2, she told me I would be a good candidate for a clinical trial which is studying the effects of Herceptin on women with early stage breast cancer who are HER2-negative. Herceptin is normally given to women who are HER2-positive which means their breast cancer is more aggressive and has a higher chance of recurrence. The particular clinical trial I was asked to participate in is trying to evaluate if Herceptin can help reduce a woman's risk of recurrence if she is HER2-negative (like me).

For a good explanation on HER2, take a look at this article on Dr. Susan Love's breast cancer website.

So I have been very conflicted about this clinical trial because Herceptin is not without its side effects. The riskiest side effect is possible damage to the heart and lungs. If I participate in the trial, I would be closely monitored for side effects and the drug will be stopped if the doctor feels my health is being compromised.

********STOP THE PRESSES!************

As I was looking for a link on Dr. Susan Love's website to help explain HER2, I found this GEM!

I have early stage breast cancer. Can I use Herceptin?

Dr. Love explains that Herceptin has been approved for adjuvant therapy in treatment of women with early stage breast cancer since 2006. And she goes on to say this:

In April 2005 the three trials were stopped about two years early when researchers found that women who were given trastuzumab along with chemotherapy were 50 percent less likely to have their cancer recur.

Wow. That is an amazing stat. 50% is HUGE.

The information on the clinical study that I am considering says that the research is being done to learn more about using Herceptin to treat HER2-negative breast cancer, specifically in premenopausal women.

I think I may have resolved my own dilemma. If Herceptin has been approved for use in women with my type of cancer since 2006 and it is reducing recurrence rates by 50% -- then I say: SIGN ME UP!

More to come.

Tuesday, August 9, 2011

I could not have said it any better

While I try very hard to remain positive and optimistic about my future, I would be lying if I said my mind never wanders to dark and scary places every now and then. When I was initially diagnosed with breast cancer, it took a day or so for the reality to hit me. And when it hit me, it kicked my ass! I had a complete and utter meltdown.

I looked at my husband and just kept saying: "This can't be happening! We're supposed to grow old together!" I thought about my best girlfriends and all the jokes we make about getting a condo together in our old age and living like "The Golden Girls" when our husbands kick before us. I thought about a recent conversation with our financial planner about how to best structure our savings so that we would have money to live on should we need assisted living.

Suddenly, all my visions of getting old went right out the window and that scares the hell out of me. No one WANTS to get old but I can assure you -- it beats the alternative!

Yesterday I was looking at some of the conversations on a message board at My Crazy Sexy Life (a wellness community started by cancer survivor Kris Carr). One comment jumped right off the screen and basically put into words everything that I have been thinking these past two months.

Today I was thinking... before having breast cancer I was so spoiled. I never truly wanted for anything, everything I desired came easily for me, a healthy body, a great husband, house, cars, trips round the world. But then, WTF?!! cancer struck and now every moment I am struck by how beautiful life is. A tickle fight with a friends five year old (will I ever have a five year old?), a road trip with my husband (how many miles left?), sitting in my fancy house (will these curtains outlast me?), every small minutiae seems infinitely precious. Do I appreciate cancer? HELL NO! but it has made me aware of how amazing this life is.

-- Written by Carissa, a 29 year old with breast cancer who just underwent a mastectomy, chemo and radiation

**Note: For those of you who think breast cancer does not strike younger women, think again. It does and it is getting more prevalent.

I find myself thinking very similar thoughts as Carissa, particularly the ones about "will these curtains outlast me?" I wonder if my 8 year old dog (with diabetes, Cushing's disease and cataracts) will outlast me. Strange, I know. But this is what happens to my mind at any given moment. It takes a very sharp detour down a dark and scary path.

I know that I need to do everything in my power to stop these thoughts from overpowering me. But at the same time, I have to believe these thoughts are a natural part of the process. I just need to make sure they don't take over my fighting spirit and the belief that I will become healthy again.

Thursday, August 4, 2011

Chemo - Bring it on!

My decision to take chemo was made pretty easy for me today.

I had an appointment this morning to have my surgeon look at my breast to verify whether or not it is infected. While I was there, I confirmed the information about my lymph nodes.

It turns out my surgeon was mistaken about what was found in my lymph node. Evidently, he read one of the other measurements regarding margins and thought it was the finding in my lymph node. Or I heard him incorrectly (NOT).

Bottom line: there was indeed a metastatic tumor that measured 9 mm. which is not huge but definitely not "micro-metastatic." Everyone agreed that my oncologist's recommendation to do chemo is absolutely correct. There was no more doubt in my mind or concern about getting a second opinion.

I cannot start chemo until we are sure there is no infection in my breast. The surgeon's PA drained some fluid to have it checked. She also did an ultrasound but did not see anything out of the ordinary. The redness of my skin could simply be bruising from the pressure of the fluid build up in the lumpectomy site. I will know for sure on Monday when my results come back and I go in for a follow up appointment.

In the mean time, I am taking some kick ass antibiotics which make me a little nauseous and very drowsy. I am going to need to take this med at night after dinner so I can lay down and sleep it off.

All for now...

Wednesday, August 3, 2011

Oncology Update

My update is a little conflicting and I have more investigating to do but here is what I know right now.

Barry and I met with my oncologist, Dr. H at VCU's Massey Cancer Center. According to Dr. H the cancer that was found in my sentinel lymph node following surgery was not "micro-metastatic." She says is was an actual tumor which measured 7 mm. in size which she said is very small but not microscopic as Barry and I remember the surgeon telling us. The good news is that the tumor was self-contained. It had not spread outside the walls of the lymph node structure. I need to ask some more questions of my surgeon to understand why he says it was "micro-metastatic cancer" and my oncologist is saying "tumor." My surgeon was pretty adamant that I would not need chemo but then again - he is a surgeon, not an oncologist. Someone's wires are crossed somewhere and that makes a big difference in the decision to do chemo.

Because of the lymph node involvement, Dr. H recommended I take some chemo - she called it "chemo light" - which would be six rounds of two drugs: taxotere and cytoxan. I would take these drugs every three weeks through an IV. There is a third drug that is often given to breast cancer patients (I can't remember the name - sorry!). This third drug is the one that causes most of the nausea, vomiting and carries a risk of weakening the heart. She said I would not have this third drug. I believe the normal chemo regimen is 8 rounds of all three drugs.

Yes, I will lose my hair on this regimen. Besides the hair loss, my side effects would be mostly tiredness, muscle aches and chemo brain (foggy thinking - worse than what I already have!). There is an increased risk of infection, possible nausea/vomiting and a rare risk of leukemia. Dr. H then recommends radiation following chemo, eventually a complete hysterectomy and then hormonal therapy (either tamoxifen or an aromatase inhibitor) to suppress any estrogen in my body.

I had the oncotype DX test which is a genomic test of my tumor. This test really didn't seem to help much only because my score came out in a "gray" area. The test recommends no chemo for someone with a score of 18 or less. My score was 17 which would indicate no chemo. But it does not take into account the fact that I am pre-menopausal or the fact that I have lymph node involvement. And Dr. H feels that since I was on the high side of "no chemo" and have the lymph node involvement, she believes chemo is necessary. She also said the oncotype DX test people are strongly considering moving that low range from 18 down to 16. If my score was really low - like a 5 - and I had no lymph node involvement, then that would make a decision to not do chemo relatively easy.

In other news... I have developed an infection in my breast in the lumpectomy site, so I have to go on antibiotics over the next 7-10 days before I can start chemo anyway. This gives me some time to sort this out and seek a second opinion. I am strongly inclined to do chemo. I want to make sure I hit this cancer with everything possible.

Even though I have been through surgery, this experience doesn't seem real to me. I am sure it is going to get a whole lot more "real" in the coming weeks.

On a positive note - just think of all the money I will save on haircuts and color this year!