Saturday, December 24, 2011
We're having a great time visiting family and catching up with friends. I have spent the past two afternoons out by the pool just soaking up the warm, sunny weather. This is exactly what I needed.
And how's this for a "feel good" story... I went to a local nail salon to get a pedicure this morning. As I was sitting in the spa chair, I told the woman who was working on my feet that I had just finished chemo and was so excited to be able to get a pedicure again. I went to pay for my service and someone had paid for my pedicure.
I found out it was a woman who was getting a pedicure two chairs down from me. Unbelieveable. I gave her a big hug and thanked her and told her she really didn't need to do that but she insisted.
I told her that she needed to promise me that she would do her self-exams and get her annual mammograms and she promised. We hugged and I left the salon with yet another example of how huge some people's hearts can be. Amazing.
I know that when I get through this -- I will definitely need to pay it forward.
Hope you all have a wonderful holiday season spent with those you love.
Sunday, December 18, 2011
Friday evening I was feeling fine and decided to sit at my desk and get caught up on some email. A couple of hours later, I got up from my desk and tried to walk to my bedroom when I realized my ankles wouldn't bend. They were stiff and just wouldn't bend at all.
When I looked down, this is what I saw. How disgusting and scary is this?!
My last chemo was on December 7 and the doctor said I could stop taking my diuretic one week later. I took my last Lasix on Wednesday and this is what happened to me on Friday. Needless to say, I am back on my diuretic. I also bought some compression stockings to wear until the fluid retention went down.
To top it all off, Saturday night I had an employee Christmas party to attend. I am usually all worked up about what to wear, how to do my hair, etc. Not this year. I didn't have much of a choice. I pulled on stretch pants and found a top that had some red in it and still fit. No sexy shoes for me. I wore my compression stockings and Dansk clogs. They were the only shoes that I could get on my feet. They were brown and my stretch pants were black. Oh well - it was the best I could do. And hair - how to do my hair? What a joke. I put on a wig and called it good.
Today the swelling is down and I am back to normal. Whatever that is. I don't feel normal at all. I feel lost. I look in the mirror and I barely recognize myself.
My goal for 2012 is simple. Get myself back. Hopefully stronger and healthier than before all this mess.
Friday, December 16, 2011
- I just realized this morning that I have absolutely no nose hairs. None. I must admit that I love having no body hair thanks to chemo. But no nose hair is DA BOMB. Seriously. And no "tailfeathers." That's cool, too. I may keep that up even after the hair starts to grow back in. Just sayin'...
- I am so excited about our trip to Florida for Christmas. I absolutely cannot wait to see my family and friends and soak up some sun. I am just not sure what I am going to wear. None of my shorts from last summer fit me now. Bah humbug.
- We just got a new car two weekends ago. I love it. After sharing one car for the past year, having two cars again is a LUXURY.
- My husband got a job. Actually, he is starting his own business. He will be selling AFLAC insurance to employees who do not have robust benefit plans through their employers. It doesn't matter what he's doing. I am just thankful he has found something he is interested in. The money will follow (I hope).
- I love the TV series "Breaking Bad." OMG. This series makes "The Sopranos" look like crap. The series was created by a guy from Richmond, VA and he makes some references to the people and places he knew growing up here. The scripts are clever, the story line is intriguing. Bryan Cranston is a great actor. I can't get enough. But you can't just start watching it. You must rent it from Netflix (or wherever) and start from Season 1, Episode 1. It's worth it.
- I plan on baking LOTS of Christmas cookies this weekend. At least - that is my plan.
- I'm happy. Really freakin' happy. And I am so thankful to be done with chemo. I love my life. I hope it stays this happy.
Saturday, December 10, 2011
And I mean a kickass, huge, three-ring medical binder. You will need it. I started out with a three-ring binder that was 1.5" in diameter. I am up to the jumbo 3" size and still growing. If you go through chemo, the binder is a must because there is no way you will be able to remember any of this stuff.
I have my binder separated into sections:
- One section for each doctor. I ask for copies of everything whenever I have an appointment and put my records in the binder. This helps when I am going to doctor appointments - a doctor may not have received my latest test results. With my binder in tow, I can usually pull out the latest and greatest information which definitely saves time at appointments and makes things go a little smoother.
- A section for my medical bills and corresponding claims, payment history, etc. This section is really useful to have on hand in case you have a question about a bill, a claim or need to follow up on a payment when you are at the doctor's office. It also helps me stay on top of what I've had done and who did it to me. (haha!)
- A calendar section to write down appointments and keep track of procedures. This helps when the doctor wants to know the last time you had your blood counts checked or received your Neulasta injection. I can quickly look at my calendar and say: I had my blood counts checked on XYZ date without hesitation.
- A section that lists all medications you are taking or have taken. My list includes everything from my chemo drugs to my Vitamin D supplement to my laxative. Seriously. I write down what I take on a daily, weekly, monthly or as needed basis. If you stopped taking something, keep track of when you stopped. You can also keep notes on side effects, etc. This is a huge help if you have to see a new doctor or end up in the ER for any reason. Trust me.
- A section for notes and questions you want to ask your doctor. Keep your questions and answers together and just keep adding to them. This is important because one healthcare provider may give you one answer to a question while another provider might disagree. It's best to have all your questions and answers in one place so you can easily refer to them when you have an appointment.
- A section with important phone numbers. I keep every doctor's phone number and emergency contact. I also keep other important phone numbers including the number for my pharmacy (I cannot tell you how many times I am asked for that information!). You might keep all your phone numbers in your list of contacts on your cell phone. That's fine but in a situation where someone else might need to call on your behalf (like your spouse or a friend), I think it's easier to just have everything in one place.
I carry my binder to all my appointments. Sometimes I need it and sometimes I don't. But when a doctor or nurse or other healthcare provider asks me a question, the answer is usually in my binder and I am always glad I have it with me.
Wednesday, December 7, 2011
First, I just read a post from Ann on her blog "Breast Cancer? But Doctor I Hate Pink." She's home from the hospital for now and still fighting her infection. But she sounds strong in her post and I have a very good feeling that she is going to fully recover. You are in my thoughts and prayers, Ann.
And my thanks to everyone who left a comment on my last post about being worried about Ann. She obviously touches a lot of our lives through her blog.
My big news is that I finished my six rounds of chemo today! WOO HOO! My husband got me a sweet card that had a penguin jumping in the air on the front and shouting "Woo Hoo!" He knows me so well... After 23 years, he should - hehe!
Here are a couple of pictures for your viewing pleasure. I had to take one with my Boston Red Sox cap on. I am hoping that 2012 will be a better year for our team and for me.
Here is a picture of my nurse hooking me up to my first chemo drug. She has to wear a HAZMAT outfit when she handles the chemo -- that's how nasty the stuff is.
Happy, happy, joy, joy, joy!
I just hope and pray that I don't ever have to go through this again. For now, I am focusing on the positive - chemo is OVER!
And being the planner that I am, I am focusing on next steps. I will be meeting with the radiation oncologist sometime this month to get set up for radiation treatments. Then I will start radiation after the holidays. I am hoping to be done with them by the end of February.
I will need to wait six weeks before I can have a hysterectomy. I will need a full hysterectomy because I also have a large uterine fibroid that is benign but needs to be removed. So it will all come out sometime after radiation. With any luck, I am hoping to have my surgery in April and be fully recovered by early June - one year from my diagnosis.
Thanks for stopping by to read my blog. I'm off to celebrate with a nice big glass of water.
Tuesday, December 6, 2011
A couple of months ago, Ann "graduated" to Stage IV metastatic breast cancer when doctors found mets on her liver. She apologized to her readers in this post. I must say, her post broke my heart. It REALLY hit me hard because I have been reading her blog and relying on her words of encouragement. I know that's selfish of me to say. But she is a big part of my life after diagnosis.
Ann is a fighter. She opted for more chemo and sought state of the art treatment in San Francisco. Her doctors told her she was a candidate for liver resection surgery which she underwent in early October.
Now she is fighting for her life - trying to fend off a horrible infection in her colon. She is in the hospital (again). She has been able to maintain contact with her friends and readers through her Twitter feed which is also on the sidebar of her blog.
I don't like what I'm reading. I'm so worried. I am praying that she makes it through this horrible experience.
I hate cancer.
Monday, December 5, 2011
I was a little worried that my counts would be too low since I did not get a Neulasta injection after my last round of chemo. My counts were very low ("dismal" is the word my doctor used) just before Thanksgiving. She was worried I might get very sick over the holiday. The last thing I wanted was a postponement of my last chemo. That was NOT going to be an option for me!
I made sure I took it easy, avoided crowds and ate healthy foods - especially beans and legumes which are known to boost blood cell counts. I am feeling fine and my blood cell counts reflected that today.
I am so relieved... I have the chemo finish line in sight!
Tuesday, November 29, 2011
First, order the book "Cancer Has Its Privileges: Stories of Hope and Laughter" by Christine Clifford. This book was recommended to me right after my diagnosis by someone who has "been there, done that" with breast cancer. It is a collection of personal anecdotes - mostly women - and it is spot on.
Second, check out this new blog called The Perks of Having Cancer. Yes, there are some perks. I personally love Perk #20 (it is so true!).
I think I have come up with my own perk... Now that I am bald, this is a great time to go in for my annual skin cancer screening. No hair = very thorough screening, right? Talk about efficient!
Just a thought.
Wednesday, November 23, 2011
I feel human!
Oh, so human!
I went poo and now I'm so light!
And I pity
Any girl who isn't me tonight!
You get the picture...
My extreme discomfort for five days following chemo was due mainly to constipation. Yes, I was retaining some fluid but not nearly as much as what was being retained in my colon. EEK. "They" told me this could happen. They told me to take constipation countermeasures. Every good chemo patient hears the same thing. My bowl of All Bran cereal each morning had been enough -- until now.
Now I will start taking appropriate countermeasures (i.e., stool softeners) at least one or two days before my next chemo session. And I will continue to take them along with my bran cereal for at least a week. If I need Miralax, I will toss that in there, too. Whatever it takes. I only have one more round to get through.
In other news, I had also been experiencing nagging pain in my kidneys after this last round of chemo. I was a little worried that maybe my kidneys were not up to the task. I had my blood counts checked today and they also checked my kidney function. They are fine and functioning normally. I just happen to be someone who feels them working extra hard when I am drinking so much water and trying to flush the toxins out of my system.
Speaking of blood counts, my white cell count was a little on the low side but my oncologist is not making me do a Neulasta injection. I would have refused it anyway. She asked me to just be extra careful to wash my hands, stay away from sick people and take it easy over the holiday weekend. I can do that.
Monday, November 21, 2011
"They" were right.
I spent most of Friday, Saturday and Sunday either lying on the couch or curled up in bed. I slept, I dozed, I got up and went to the bathroom. Then I laid back down as soon as possible. Even after getting ten hours of sleep the night before, I found myself shutting my eyes for a "quick cat nap" only to wake up three hours later. The entire weekend was like some weird Rip Van Winkle experience. One day it was Friday. The next I knew, it was Sunday.
And the bloating... It is un-freakin-believeable. I have no words to describe it. My stomach literally distends out to a point where I look like I am at least six months pregnant. My entire abdomen is tender and sore. It is mostly caused by fluid retention from the chemo (taxotere). Throw in some good old-fashioned constipation which is a side effect of just about everything I am taking, and you have a recipe for extreme discomfort. (And flatulence but we won't go there!)
I am drinking lots of water, taking my diurectic every day, eating lots of fiber and even taking Miralax. The only thing I can do is wait it out - wait for the chemo to get flushed out of my body. I believe it's starting to happen because today is the first day where I have been able to feel halfway human and also stay awake all day.
I am slowly feeling better... just in time for my last round of chemo on December 7!
Thursday, November 17, 2011
First and foremost, one thing I have learned about breast cancer is that some women beat it and some women don't. It sounds simple but it's not. Some women thrive for 20-plus years and then have a recurrence. Others convert to a vegan lifestyle, practice yoga, run marathons... They do absolutely EVERYTHING they are supposed to do and still end up with metastatic breast cancer.
The harsh and simple truth is, unless a woman was initially diagnosed late and started at Stage IV -- EVERY women out there who is Stage IV started at Stage I or II or III - just like me.
Receiving a diagnosis of Stage I or Stage II is not a guarantee that I will sail through this and not have to deal with this again. There are no guarantees. Yes, my chances are definitely better with early detection and being at Stage II. I would rather have had no lymph node involvement. I would rather have had just a lumpectomy and radiation and skipped the chemo altogether. But that is not how it turned out for me.
Now I am beginning to understand why so many women tell me not to focus on my stage. Stage really means very little.
Surviving and thriving means everything. Living a healthy, balanced life and being happy is what is most important. Being of service, contributing, getting involved and making a difference in someone else's life is important. Being grateful is important.
So what does this all mean? I am not exactly sure but here are some thoughts:
- Get through chemo and rest up over the holidays.
- Get back on green juices.
- Start working out again, slowly, taking babysteps to build up my stamina.
- Eat healthfully but also enjoy eating.
What does this mean for me? I realized I cannot go all the way with a raw, vegan lifestyle. It makes sense to me but I really wouldn't enjoy it. Remember, I want to focus on living a balanced life. Part of that means also enjoying what I eat.
This doesn't mean I am shutting the door on raw, vegan meals. I will make a concerted effort to eliminate more meat from my diet. I can easily eat two vegetarian meals a day. But I still want to enjoy an occasional steak.
This leads me to wine and alcohol in general. I have needed to cut down on my alcohol consumption since before my breast cancer diagnosis. This is a fact. Breast cancer or not, I am working on limiting my alcoholic intake. I am definitely doing better but I have a way to go. Again, moderation and balance while still enjoying my life.
And then there are the things I want to do, the places I want to go. Here is a quick list. I refuse to call it a bucket list. I am not kicking the bucket anytime soon. These are places I have wanted to see and things I have wanted to do for years.
- See Yosemite, Yellowstone, Glacier and Denali National Parks
- Rent a cottage on the coast of Maine for one or two weeks for summer vacation, eats lots of lobster and read lots of books
- Try horseback riding
- Join a yoga studio, develop my own practice and maybe start a yoga studio of my own
- Finish my Masters degree
- Hike as many trails in the Shenandoah National Park as possible and get to know the park system well
- Find a cause for which I am suited for volunteering my time
- Get back in shape so I can plan a hiking trip to the Grand Canyon and stay at the Phantom Ranch
- Take more three-day and four-day weekends to visit my friends and family
- Go on a WindStar Carribean cruise
And that's just the beginning. I know, I need to hit the lottery!
I can remember getting the news back in August that I would need six rounds of chemo. I looked at the calendar and marked off December 7, 2011 as my last round. It seemed so far away and now it is almost here.
I must say this time has gone by quickly. Feeling pretty decent and being able to stay busy at work has definitely helped. And I am very thankful for that!
I am experiencing some shortness of breath and my oncologist ordered a CT chest scan. My lungs are clear and everything looks good. She cannot pinpoint why I am having this issue.
I can tell you why I am having this issue. I am carrying 25 extra pounds around my waist (I have a double muffin top!), I am retaining fluid and I am convinced the Neulasta injection is causing some shortness of breath.
So my oncologist agreed to give me both chemo drugs yesterday and hold off on the Neulasta injection. We'll see how I feel over the weekend and have my blood counts checked next week on Wednesday. As long as my blood counts are holding steady, she won't give me Neulast this time around. Let's hope the extra beans, legumes and lentils I will be eating this week will help with my blood counts!
Now I'm gonna get a little deep on you... but I will save it for my next post.
Sunday, November 13, 2011
But I feel like the end is in sight. It is so close... I can almost touch it. But I can't quite get my fingers on it.
I want my life back. I want my body back. I want to feel good again and have hair. I am finding my days consumed with wondering about "What's Next" and how do I get there?
I have gained about 20 lbs. since I was diagnosed. A combination of chemo drugs that encourage fluid retention combined with a raging desire to eat comfort food has resulted in my Michelin Man appearance. I hate it.
One of the women at work who is a 14 year survivor told me that she gained about 50 lbs. and needed to go to Weight Watchers to get the weight off and it took her years. Yes, YEARS. I don't want that to be me. I have a 30 year high school reunion coming up in June 2012. I want to look good and feel good for the event. Perhaps I am being unrealistic. I just don't know.
And then I wonder about my next mammogram. I had a chest CT scan a couple of weeks ago when I was having difficulty breathing. The scan came back clear but guess what the nurse told me? She said they saw "a lot of cysts" in your breast tissue.
No shit. I have dense breasts and lots of cysts. That's me. But the thought of one of those cysts being anything but benign has me worried. I can't stand the thought of going in for my next mammogram and have them do a needle biopsy and say: "It's malignant." What then? A bi-lateral mastectomy? Another lumpectomy and six months of chemo and no hair. Shit.
Truth be told --- this is where I'm at. I am so ready to put this behind me but part of me worries that I won't be able to. I am crazy for worrying about something that hasn't happened. I get that. But it's hard. Once you've had the "Big C" diagnosis, it is really hard not to worry about the what ifs.
Other than that - I'm great. I feel really good and am enjoying my fall in Virginia. The leaves are turning and the weather is gorgeous. I love this time of year here.
All for now...
Sunday, November 6, 2011
I was getting a little down last week - I think because I was feeling so lousy. But I am feeling better this weekend and just realized -- in only 30 days I will be DONE WITH CHEMO! Just two more sessions. Just one month (and a month goes fast). And I am done with chemo.
Let's hope it is forever.
Saturday, November 5, 2011
My husband dropped me off at the airport, I checked my bag and made my way to the gate just pulling my laptop bag. By the time I got there, I was completely winded and felt very tired. I figured it was just fatigue from chemo.
The next two days of my trip were more of the same or worse. I could barely walk the two blocks from the hotel to the office. I had dinner with a friend and had to stop and rest so I could try to get enough air into my lungs. I was having a really tough time breathing.
I got home Wednesday night - winded and tired. I slept great and went into the infusion clinic on Thursday afternoon for my Lupron injection. When I told the nurse practitioner about my shortness of breath, she was concerned. She measured my blood oxygen saturation level which went down pretty dramatically when they had me walk the hallways. She immediately sent me to the ER for a CT chest scan. She told me she was worried I had developed a pulmonary embolism (blood clot) from flying.
So off to the ER I went. The waiting room was full but they took me in immediately. No waiting for me. I saw the doctor, had some chest x-rays, saw some nurses, saw another doctor and then had my CT scan.
Then I waited for the results. And waited. And worried. I thought: "If this is a blood clot, they are going to keep me overnight and put me on coumadin. Yuck."
Then I thought: "What if my cancer has spread to my lungs? What if it isn't a blood clot? What if I have a tumor in my lungs?"
And then the real fear set in. I thought to myself: "You haven't taken this cancer thing seriously. You haven't really adjusted your lifestyle. You are still eating and drinking whatever you want. You haven't even gone to church once. What is WRONG with you?"
It was not a good time. Cancer meltdown #4 (or is this #5?) arrived.
But the CT scan came back negative for clots, tumors or anything else horrific. My lungs were clear. So what was causing the breathing problems?
Our friend Neulasta. I Googled it while the docs were all scurrying around and it looks like Neulasta can cause shortness of breath and difficulty breathing. Worst case, it can cause Acute Respiratory Distress Syndrome. Lovely. That is the last thing I need.
For now, I am feeling okay and breathing better. I am taking it easy and will see my oncologist next week. But one thing is definite - no more Neulasta!
Sunday, October 30, 2011
All I can tell you is that right after I get my Neulasta injection, I feel like I have been run over by a very big truck. The first time around, I had some bone pain that wasn't too bad. I took Aleve and it went away. But now that I have had four rounds of chemo, my body must be weaker and the side effects from Neulasta are stronger. I get the worst body aches and chills and just basically feel like I have the flu for about 48 hours.
So yeah -- this is a whiney blog post today. I felt horrible yesterday and stayed in bed until 3 PM. Most of my pain is in my lower back and thighs. My kidneys are really sore. I hate to sound like a baby, but once you have cancer, you wonder if every little ache and pain is related.
One thing I know for sure -- as soon as I am done with chemo and Neulasta, I need to heal my body through more holistic and natural means. I can already tell that I am going to have a lot of "repair" work to do after this experience. And then there is the radiation treatment and five years of tamoxifen or aromatase inhibitors.
For now my goals are simple. Get through this phase as best as I can. Drink lots of water, stay hydrated and flush this crap out of my body. Get plenty of rest (no problems there!). Start a walking routine. Meditate. Maybe do some gentle stretching/yoga at home. I am not sure that I can manage a regular yoga class. I get tired very quickly. Eat well.
I am almost there. I can see the chemo finish line...
Thursday, October 27, 2011
When I got to the office today, I was presented with MORE thoughtful breast cancer awareness gifts. The women in our Staunton, Virginia office put together a cute pink gift bag just FILLED with pink ribbon items and inspirational sentiments. I was really overwhelmed. Here is a picture of me with all my little pink goodies... I am so blessed to work with so many wonderful people!
In other news...
I had my fourth round of chemo and met with my oncologist. Everything is going really well. No major side effects from the chemo besides the water retention. Even my hair is starting to sprout back just a little. I told my oncologist that I am feeling pretty good all things considered, if it weren't for this "cancer thing."
And she said: "You need to start saying 'you HAD cancer' -- there is no indication that you have cancer now. This chemo is just a little extra precaution."
So there you have it -- I HAD CANCER. That is going to take some getting used to saying. I really don't take cancer lightly. Can I ever be sure it's gone? Absolutely not. But I might as well stop living like it's lurking over my shoulder. As I said in my last post -- and this is what I said to my doctor -- I am ready to get this behind me and get my life back on track. She could not agree more.
So this is my new mantra: I HAD CANCER. I HAD CANCER.
I am a little tired from chemo but went to work today. I know that tomorrow and Saturday will be my days to crash and burn. That's fine, it's supposed to be cold and rainy here this weekend. It will be perfect for curling up in bed and reading or watching old movies. My husband and I have been watching "Mad Men" through Netflix on our Roku. We also queued up the old mini-series "The Winds of War."
So my plan is to just get as much rest as possible this weekend because I am flying to Columbus, Ohio for a business trip on Tuesday and Wednesday. My oncologist saw no problem with flying and just told me to move if I am seated next to a coughing, sneezing person. She didn't even think I needed to wear a mask. That's good, right?
I did have my flu shot while I was in for chemo yesterday. No reactions to it -- at least not any as of today. I have to go in for my Neulasta injection tomorrow morning. That usually gives me some joint and bone pain so I start taking Aleve twice a day on the day of the injection. I take it for about four days and that usually handles the initial pain and then I'm fine. My oncologist was very happy with that report because she said some people really can't handle the Neulasta injection.
So that is my update as of today. Four down - two to go! woo hoo!
Sunday, October 23, 2011
During my vacation, I realized that my attitude is starting to change. Now that I am halfway through chemo, I am less scared and that is a very good feeling. Those first couple of months when I was diagnosed and didn't know what to expect -- that was the WORST time. Going through all the biopsies and surgery, waiting for results, starting chemo, worrying about being sick and losing my hair... those experiences are all in the rearview mirror and now I feel more in control and hopeful.
I feel less like a cancer patient and more like myself, if that makes sense. I still have three more rounds of chemo to go plus radiation, but I am not afraid. I feel like these past four months have made me a stronger person. I feel more able to overcome adversity and cope with challenges.
Ten years ago, I was in really good shape -- very physically fit and strong. I worked out almost every day and took yoga classes at least twice a week. Then, after my mom died in 2007, I lost my motivation. You would have thought her death from cancer would have been a great motivator for me to keep working out and taking care of myself. Instead, it was like a light just turned off and I couldn't seem to pull myself out of the rut.
There is a big difference between just wanting to do something and intending to do something. When you want to do something, you are basically just wishing for something to happen. But when you intend to do something, you are committed to making it happen. You take action.
So today on my blog I am declaring my intention to build a healthier lifestyle both physically and spiritually. It is time to stop worrying about cancer and being afraid. It is time to start rebuilding my health and loving my life again.
I am READY!
Tuesday, October 18, 2011
I have been so darn uncomfortable in my clothes that I finally broke down and bought bigger pants. I had no choice. My tight pants were making my life miserable. It is amazing how much your life changes when you finally put on something comfortable. Ahhhh! Relief!
Another huge relief is that my period finally stopped. I think the lupron injection is working. And my bloating is wayyyy down. I haven't taken my prescription diuretic lately because I haven't felt like I need to. My ankles are not huge like they were and my new bigger pants are more comfortable. I am planning to take it only when I really need it and right now, I don't feel like I need it.
And finally -- I am on vacation! Relief from work! haha! I am enjoying the fall weather in New Hampshire visiting friends and family. The fall foliage is a little past peak but I don't care. The weather has been nice and we're having a great time.
Then it's back to work next week and chemo #4 next Wednesday. Time flies...
Monday, October 10, 2011
One of the hardest parts about having cancer and going through chemo is this whole "getting ready for work" thing. Absolutely nothing fits. And I am bald. I know, I know -- it's what's on the inside that counts. I get it. But honestly, I am fighting for my life here AND trying to maintain some sense of normalcy. It's not easy and getting ready for work in the morning can be a real torture session.
I guess this is what they call "the new normal." I fucking hate the new normal, okay? And this morning I didn't want to deal with the new normal -- figuring out which scarf goes with my outfit or how to unbutton my pants without anything showing. And then I put on my new wig (so I could avoid the whole scarf-matching dilemma) and I lost it. I absolutely fucking lost it.
While my wig looks good, it's not my hair. It's too straight. It doesn't move the way my hair used to move. It cannot be styled because it might melt (it is a monofilament wig). It's just not ME.
And I want ME back. I want to get rid of these 20 extra pounds that are making my life hell. I want some color in my skin. I want thick eyebrows and eyelashes. I want my hair back and not this stubbly white shit that is sprouting up all over my skull. I want MY hair.
Then my darling husband made a most unfortunate mistake. He suggested I work from home.
I DON'T WANT TO WORK FROM HOME! I want to go to the office like everyone else. I want my normal life back!
So as you can see, my morning did not get off to a good start. I had another cancer meltdown. I dried my tears and went to the office where I could pretend to be normal.
And there, sitting on my desk, was a gift wrapped in festive paper with a card sitting next to it.
For me? But of course - this is the "new normal!"
I opened the card which was a humorous little note congratulating me on making it halfway through my chemo. From my boss. How nice is that? And the gift was a sweet coffee mug which he had picked out for me. It was covered with these inspirational wishes:
This is my wish for you:
- Comfort on difficult days
- Smiles when sadness intrudes
- Rainbows to follow the clouds
- Laughter to kiss your lips
- Sunsets to warm your heart
- Hugs when spirits sag
- Beauty for your eyes to see
- Friendships to brighten your being
- Faith so that you can believe
- Confidence for when you doubt
- Courage to know yourself
- Patience to accept the truth
- Love to complete your life
It was exactly what I needed this morning. EXACTLY. But that wasn't the end... Not even close. This is the "new normal."
At lunchtime I received this Edible Arrangement from three women I work with.
Then after lunch, another co-worker came to my office and gave me a beautiful pink bromeliad in honor of Breast Cancer Awareness Month. I put it on my filing cabinet and marveled at how many wonderful people I work with.
Before I knew it, the day was over and it was quitting time. I arrived home to find a little package in the mail addressed to me. When I opened it, I found a lovely card from another co-worker telling me to keep the faith. And she had picked out two sets of earrings and enclosed them in the package telling me that she thought they would look nice on me.
AND there was a sweet card from my sister which read: "Do you know how many calories are in a glass of wine? No, you don't. That's why we're friends!" And she added "sisters" underneath the word "friends." Love it!
I am absolutely amazed at the outpouring of support I have received since my diagnosis. But today was something all together different. I really needed it today.
Maybe I don't hate the new normal after all...
Sunday, October 9, 2011
Luckily, I slept well last night and basically stayed in bed until now. I feel better but definitely am not back to 100%. I am extremely fatigued. So my plan is to just take it easy the rest of tonight and work from home tomorrow if I have to. I am supposed to travel for business this coming week but I have already decided to change my plans.
Barry and I leave for New Hampshire on Saturday. It's an 11 hour drive. I want to stay close to home this week and get plenty of rest. Plus, I can get caught up on some work while everyone else is out of town.
In other news, I bought a new wig this past week. I really like it. There is so much to learn about wigs. You can truly spend a fortune if you are so inclined. I made the mistake of buying a cheap synthetic wig the first time around. It looks okay but it is hot and heavy and very uncomfortable. This time I spent more $$$ and bought a monofilament wig which is very lightweight and comfortable.
I will post some pictures at some point when I am so inclined. Right now, I just want to go lay down...
Friday, October 7, 2011
But I am doing well today. I went in for my Neulasta injection this morning and thought I might work from home afterward. But I felt good and decided to go into the office. I worked all day -- not hard, no serious deadlines, just regular stuff -- so it was a fairly easy day.
The diurectic must be working because I was able to get my fat jeans on this morning which was good enough to go to work since I did not have any meetings scheduled. Hallelujah!
Anyway - just wanted to check in real quick. I am doing well enough after Round 3 of chemo that I am hoping to go to the Fall Art Festival in Waynesboro, Virginia with a friend this weekend.
Wednesday, October 5, 2011
Then I had a good (new) friend join me for lunch during my chemo session. "M" brought lunch from Panera's, we had a wonderful conversation and got to know one another just a little bit better which is always a great thing. She's been there, done that with breast cancer and is a five year survivor. "M," thank you so much! I am so glad that we have connected -- and next time -- lunch is on me. Period. No arguments!
I also met with my oncologist today who gave me a high five for how well I am doing. She was happy to hear that I am tolerating the chemo well and listened to my complaints about the fluid retention. She admitted it was one of the most common side effects of the taxotere and wrote me a script for Lasix (a prescription diuretic) which I will start taking this weekend. She wants me to go slowly by taking just a half of a pill and see how I feel.
Her main concern is that I lose too much fluid and too much potassium. But since I eat a pretty healthy diet which includes a banana almost every day and lots of broccoli, she thought I would be okay with taking it. I sure hope it works!
"Female problems alert" -- if there are any men reading this blog (are there any? I hope not!) -- please divert your eyes. I warned you!
The oncologist expected that my period would end once I started chemo. Everything I've read says pretty much the same thing. I guess I am the exception to the rule. Not only has it not ended, it's gotten worse. Way worse.
I asked the oncologist if it would be possible to shut down my ovaries with an injection of Lupron. She thought it was a good idea and gave me an injection today. I will have an injection once a month until I finish chemo and go on hormonal therapy which is tamoxifen. Tamoxifen is an oral chemotherapy which shuts down the ovaries in pre-menopausal breast cancer patients who are ER positive (me).
I will take tamoxifen until I decide when to have my hysterectomy. Even after a hysterectomy, I will still need to be on a hormonal therapy which is a slightly different class of drug called an aromatase inhibitor. This drug is given to post-menopausal breast cancer patients or those who have had their ovaries removed. It is also slightly more effective than tamoxifen.
Either way, I am really looking forward to not going through a 14 day-plus cycle every month. It is really putting a damper on my (love) life! I already have hot flashes so it can't be that big of a difference. We'll see how it goes.
My hope is that if I lose this bloat and stop having periods from hell, I will feel decent through my next three rounds of chemo. Fingers are crossed. Prayers are said. Positive energy is sent into the Universe. I do believe someone is listening!
Saturday, October 1, 2011
So here's the latest... I am the Energizer Bunny!
Last weekend I had so much energy, it was insane. I completely took apart our home theater system and re-assembled all the components on the opposite side of our family room. I have been wanting to do this for ages because our current surround sound system just wasn't working well (crackling speakers, poor sound quality and a programmable remote control that required a Ph.D. to operate). I also bought a Roku and got our TV connected to the internet. So now our sound system issues are completely fixed, our cable signal is stronger, we are streaming TV and movies from our Netflix account and listening to Pandora. And I did it myself. Yay!
And that's not all... I also cooked several meals with lots of leftovers for the week, decorated my house for Fall and ran a bunch of errands. My husband was a little concerned and told me to slow down and conserve my energy for the coming week. He was probably right but I just couldn't stop.
Feeling like the Energizer Bunny is great, but I am also feeling like a puffer fish.
My weight is continuing to creep up and my ankles are nearly non-existent. When I look at pictures of myself, my face is round and bloated. Elastic waist pants are my new best friends. Ugh.
I looked up the side effects of my chemo drugs online. The taxotere seems to be the culprit. One of its main side effects is water retention and bloating, particularly in the abdomen, which is where I am experiencing it the most. When I see my oncologist on Wednesday, I am going to ask her if she can prescribe a diuretic or if I can take something over the counter. If not, I guess I will just have to suffer through this until I finish my chemo in December.
By the way, I go in for Round 3 on Wednesday, October 5th which is the HALFWAY point for me! I know I will be pretty tired a few days later but believe me, I will be having a small celebration of making it to this point.
As for this weekend, I am feeling very good (albeit puffy) and plan to make a few meals ahead of my chemo and have them stocked in my fridge and freezer. I didn't do this the last time and it was a mistake. This time I will make sure I am more prepared.
The weather has really turned and we are experiencing some lovely, cool autumn temperatures. I went to Lowe's last night and picked out all my autumn flowers. I need to stop here so I can get outside and do some gardening.
All for now!
I was diagnosed on June 2, 2011 -- four months ago -- so this October I am fully aware of what it means to fight breast cancer. I have nothing against the Komen Foundation or their huge marketing machine. Their efforts encouraged me to pay attention to self-exams, annual mammograms and early detection. And for that, I am very thankful.
Yesterday I attended the Komen Foundation of Central Virginia's annual Survivors' Luncheon which was held at the gorgeous Jefferson Hotel in downtown Richmond. Part of the ceremony recognized the survivors in the audience by asking them to stand up if they had survived 20 or more years, 15 years, 10 years, etc. I stood up when they called for survivors with less than one year. I was surrounded by women who offered me their support and encouragement.
While I am confident in my own recovery, it never hurts to be around other women who have survived this disease. More than once I was told: "If I can do it, you can, too!" It was exactly what I needed.
Sunday, September 18, 2011
- Went to a local sports bar to watch football with my husband. Drank a TALL beer and ate a burger. No problems with my appetite! Not exactly healthy choices but we had fun. ;-)
- Went shopping for a couple of hours - bought some cute lounge wear to wear on my next crash and burn days.
- Came home, did two loads of laundry, picked up around the house and walked the dog.
- Changed the sheets, rearranged our pillows - basically remade our bed with some new linens.
- Organized two dresser drawers and tossed a bunch of old clothes to make room for new loungewear and scarves.
- Made dinner (spaghetti and meat sauce), ate two large helpings then cleaned up the entire mess.
Saturday, September 17, 2011
I left work right after lunch and went in for my Neulasta injection. Then I came home and curled up in bed for the rest of the afternoon. I was up by dinner time and feeling okay. No nausea, just extreme fatigue. I can handle fatigue.
I slept great last night and am feeling okay today. My appetite is huge. Too huge! I had a Western omelette, grits and toast for breakfast this morning. Yummy! I think I may curl up in bed and watch a movie this afternoon -- or the Red Sox -- the game comes on at 4 PM.
At least I am not sick and for that, I am very grateful!
All for now...
Wednesday, September 14, 2011
I went in for my second round of Taxotere and Cytoxan today. (By the way, I was wrong in my earlier post. I am not getting Taxol. I am getting the generic form of Taxotere which is docetaxol.)
Aside from the infusion center being a little backed up with patients, the day went really well. We arrived at 8:40 which was a bit late for my 8:30 appointment. Mistake. The waiting room was already full and the nurses were scrambling. Lesson learned - arrive by 8:15 for an 8:30 appointment.
I got in around 9:30 and saw the physician's assistant. I gave her a recap of my three weeks and she was extremely pleased. I also found out that they will not be adjusting my dosage of either drug. I know when my mom went through chemo, they used to give her a strong dose one week and a weaker dose the following week. Totally different cancer. Totally different drugs. Obviously not the same, but I did ask... just in case they were going to ramp me up this time. I wanted to be ready.
The PA told me that since I tolerated it so well in Round 1, there is no reason to believe anything will change for the next rounds. She did reiterate that my fatigue will definitely increase. Everyone I know who has been through this has said the same thing. I am fine with fatigue. I have a very flexible job. I can work from home if I need to or take off early if I'm too tired. Except for taking my day off for chemo, I really haven't missed a beat.
This is going to sound very vain but my biggest concern right now is my weight. I have put on about 15 pounds since my diagnosis. Before my diagnosis I was really trying to shed "those last 10 pounds". Now my goal is 25 pounds which is a lot for me.
I am at my all time heaviest weight right now and I dread the thought of setting a new record. Not to mention the fact that I will be going into instant menopause once the doctor puts me on hormonal therapy plus I will have a hysterectomy to look forward to in 2012. So yeah - this weight thing is really bothering me.
I talked to the PA about all this and she told me I really should not be concerned with my weight right now. She told me to just maintain. She said this is not the time to lose or gain any significant weight. And my husband chimed in that he has been telling me the same thing (which he has).
But I already have my eye on next year. I want to get through this and feel GREAT about myself. I want to feel strong and healthy. I want to be Wonder Woman by next summer! Not to mention I have my 30th high school reunion coming up in June.
Everyone is telling me to be gentle and patient with myself. They are telling me I will heal faster and feel better sooner if I don't push myself too hard. It's good advice. Truly it is. But I am not a very patient person. I know this is one of the many lessons I have yet to learn through this experience.
Much to ponder...
On a different note... I have temporarily given up reading "Americans in Paris" by David McCollough. The material is just too heavy for me to get through right now. I really need some laughs, so I turned to my friend Jane Heller and downloaded a book I have been wanting to read for quite awhile.
Tuesday, September 13, 2011
I am not one to dress up for Halloween but just the other day I had a thought. My new bald look gives me all kinds of options for dressing up this Halloween! I could be a cone head a la Jane Curtin or some kind of alien and paint my face green. I could open the door and shout 'Take me to your leader!'" That would really get a reaction from the kids, I'm sure.
Then my husband chimed in and said we should dress up as Addams Family characters. I could be "Aunt Fester" and he could be "Lurch." My husband would make a great Lurch -- opening the door and staring at the kids and grunting. Perfect!
But I know us... we won't dress up. We don't even get that many kids on Halloween. But at least we can joke about it!
Saturday, September 10, 2011
We started out by leaving a little bit of length - maybe 1/4" - but even that was falling out all over the place. So we quickly realized that we had to take it all off and here I am!
My husband took this picture of me today.
And here is a picture I took of myself in my office after I returned to work.
I am actually okay with being bald. I just figure it is part of the process of healing. My hair falling out means the chemo is working and that's really the only thing I care about at this point!
Thursday, September 8, 2011
If she can do it, I can too! I am thinking this weekend is the best time to shave my head. My hair is falling out so quickly -- it's disgusting. I have some scarves so I'm ready. At least I think I am ready!
I'm no Natalie Portman or Demi Moore but... these ladies don't look so bad.
As long as I don't lose my eyebrows and eyelashes, I think I will be okay. Maybe I should go to a barber shop and do something decorative. What do you think?
Tuesday, September 6, 2011
Even though I have known this was going to happen, it was still very unnerving. I was in the shower getting ready for work and when I started to shampoo my hair, I had hairs covering both hands. And then when I towel dried my hair, it was all over the towel.
I felt like a dog who sheds really badly. YUK! If it continues to really shed, I will get it buzzed. But a part of me is still hoping beyond hope that it will just get thin. Yes, I am in DENIAL!
I think this is the most down I have felt since my surgery when the doctor told me they found a tumor in my sentinel lymph node.
The other part of this whole cancer experience that I am struggling with is feeling like a failure.
I forgot where I read it, but I remembering reading that many people who receive a cancer diagnosis often feel their bodies have betrayed them. Despite their good overall health, a daily exercise regimen and sound eating habits, their bodies developed cancer anyway. And these people generally feel angry or wonder "Why me?"
I feel just the opposite. I feel like I am the one who has failed my body. Perhaps I have not taken good enough care of myself and that is why I have cancer. I stopped exercising regularly years ago. I drink more alcohol now than I ever have. I've put on weight. I stopped going to yoga class. Cancer tends to run in my family. I have never asked "Why me?" I have concluded "Why not me?"
Obviously there is a bit of guilt involved with the way I feel right now. Perhaps that is my Catholic upbringing kicking in. It's the old "scorekeeping" mentality I know so well. Not good.
I am trying to come to terms with the fact that cancer is cancer and it is an equal opportunity disease. We all know there are things you can do to help decrease your chances of getting cancer. But there are lots of really healthy people who get cancer and die from it, including a high school classmate of mine who just passed away from pancreatic cancer at the age of 47. He left behind a wife and three kids. He was the picture of health.
Carrying around this guilt really isn't helping anything, so I have decided to look at this experience in a new light.
Maybe this "new" me -- this soon-to-be-bald person -- is someone who is very health-conscious and strong and takes really good care of herself. Maybe this new me is absolutely kickass and is much much stronger and healthier than the old me.
Where's my golden lasso?
Saturday, September 3, 2011
I remember how I felt when I received my diagnosis. I know that I had a lumpectomy and wore a lovely drain for a few days. I have a small scar on my right breast that looks like a cat scratched me. That's it. Oh, and another small scar under my right arm where my lymph nodes were removed. I have had one round of chemo but no bad side effects.
I actually feel really good right now and I guess that is why it's hard for me to believe I have cancer.
I am not asking to feel bad. Believe me, I don't want to feel bad! But I went for a long bike ride this morning with my husband and was just so thankful that I feel this good.
I am sure I will have days where I will feel lousy. And I will blog about them when they happen. But for right now, I feel fine and am just waiting for my hair to fall out. The big hair loss is supposed to happen next week (2 weeks after Round 1 of chemo). We shall see. Maybe that will make it all a lot more real for me.
Until then, I am just enjoying the hell out of life especially now that the worst of the summer heat is gone and we're getting ready to head into Fall (my favorite season)!
Thursday, September 1, 2011
Wednesday Day 1: Chemo infusion from 9 AM - 2:30 PM. Went home and napped the rest of the afternoon. Felt fine.
Thursday Day 2: Went to work, felt like the Energizer Bunny (thanks to decadron). Got my Neulasta injection in the afternoon.
Friday Day 3: Went to work but felt like I needed a nap in the afternoon (no more decadron).
Saturday Day 4: Was exhausted pretty much all day. Stayed in bed, dosed, napped, took it easy. This was also the day the tropical storm hit our area so we had no power. Napping was the best option!
Sunday Day 5: Not quite as tired. I would do a few things here and there, then lay down and rest. Still no power so napping was still the best option.
Monday Day 6: Went to work. Tired by the time I got home but not exhausted. Got our power back on. yay! Started to feel some bone pain. Took Advil and it went away.
Tuesday Day 7: Attending an offsite training session all day. Felt fine but was tired when I got home. Not exhausted. Felt some pretty bad bone pain during the night. Have added Aleve to my daily pill regimen.
Wednesday Day 8: Feel great! Tired in the evenings but no more bone pain. The Aleve is doing its job.
Part of the reason I think I am feeling so good is that I am getting a great night's sleep every night. My oncologist gave me a script for lorazepam (Atavin) which I take every night before bed. And it works. I sleep through the night without any strange dreams and I wake up feeling completely rested and refreshed the next morning. No grogginess. Love it!
So I went from a person who never took any pills to someone with a pill box. Here is my daily regimen so far:
- Effexor 37.5 mg (low dose) for night sweats and hot flashes
- Prilosec for heartburn due to chemo eroding my stomach and esophagus
- Aleve for bone pain (morning and night)
- Lorazepam to help me sleep (night)
This lovely cocktail seems to be working for me. I also have two separate nausea meds just in case. I only took one compazine a couple of days after my chemo just in case. I wasn't exactly feeling nauseous but we had a lot of smoke in the air due to wildfires nearby and it was causing me to feel a little strange. But other than that, I haven't had any nausea at all. Knock wood.
I still have two more week to go before my next chemo on September 14. I am really looking forward to a long weekend and just relaxing with my husband and pupper.
Oh... I did order some scarves online through the American Cancer Society. I ordered them here:
I should get them today or tomorrow. My hair hasn't started to fall out but I ordered them knowing that my hair will probably start falling out sometime next week.
All in all, I am extremely lucky to feel this good and hope the rest of my treatments go this smoothly.
Friday, August 26, 2011
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
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.
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
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!
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
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
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
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 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
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
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!
Sunday, July 24, 2011
My husband and I stuck close to home simply because I really couldn't shower due to the drain and bandages. But I felt fine so we drove down to Williamsburg to walk around, shop and have lunch on Saturday afternoon. If it weren't for the damn drain, I'd have been taking a shower and gone back to work. We were both pretty amazed at how very little pain I had following surgery - basically no pain.
At 9 AM on Monday morning, the phone rang and it was the surgeon's office with very good news. Dr. K was able to get clear margins on all sides of my tumor and the additional nodes showed no signs of cancer. Woohoo! Talk about doing a happy dance! We were THRILLED!
I went back in for a post op visit and the physician's assistant removed my drain. MY GOD that was painful. Luckily, it only stung for about 15 seconds and then it was over. What a relief!
Over the next couple of days I was able to take a shower and remove the steri-strips from my breast and armpit area. My breast looks amazingly good. It's a little flat on the side where he performed the lumpectomy but if you didn't know any better, you might not notice it at all. The incision is about two inches long but extremely thin. He did not use any stitches on the outside on either my breast or my armpit. The incisions look great and will definitely fade away to nothing.
I have an appointment with the oncologist on August 2. That is when we'll talk about her recommendations for treatment. I know I will have radiation. I am not sure about chemo. Dr. K ordered the new oncotype DX test which will help determine if my cancer requires chemo and if so, what kind.
I will do whatever it takes to rid my body of cancer. Right now, I am relieved and extremely grateful.