t i n y pill = BIG pain

After my initial 8 rounds of chemo, I started taking the medication Tamoxifen. Because my breast cancer was Estrogen/Progesterone Receptor + ( or ER/PR+) part of my treatment is 5 years of a hormone BLOCKING therapy. (* note- the word BLOCKING). Basically my body's natural estrogen was causing my cancer to grow, so I need to take a medication to work against that. The first year that I was taking Tamoxifen, I was still getting the Herceptin IVs every 3 weeks for the HER2/Neu  protein found in my cancer. About a year later I opted for an Oophorectomy- removal of the ovaries. Even though I was only 31 years old- I was now post-menopausal. I stayed on Tamoxifen after my Oophorectomy, even though Tamoxifen is primarily used in pre-menopausal women. My Oncologist felt that since my body was tolerating it, we should not mess with it. In the year after my Oophorectomy, my body went into revolt. The hot flashes, night sweats, mood swings and weight gain went into overdrive! Imagine gong through instant medical menopause and not being able to take anything to alleviate the side effects. Nothing medical, herbal, homeopathic or synthetic And on top of it- you're actually trying to work AGAINST the little amount of  hormones left in your body! My doctors tried to find some remedy by adding a (non hormonal) medication to the Tamoxifen. I had moderate relief at first but then it seemed to be getting worse as each month went by. About 1 year later I had enough and asked my Oncologist to switch me to a different estrogen blocking medication.

We selected Femara (Letrozole)-
From Web MD :
This medication is used to treat certain types of breast cancer (such as hormone-receptor-positive breast cancer) in women after menopause. Letrozole is also used to help prevent the cancer from returning. Some breast cancers are made to grow faster by a natural hormone called estrogen. Letrozole decreases the amount of estrogen the body makes and helps to slow or reverse the growth of these breast cancers. Letrozole is usually not used in women of childbearing age.

Femara is a teeny tiny pill. Check it out:

My Oncologist talked to me about some of the potential side effects that Femara has. Most common is bone density loss, which can lead to fractures or osteoporosis.  Since I am only 32, the whole bone loss issue isn't a large concern for me . It's something that we will just monitor. Like any other medication there's also minor side effects.  And what do you know- I have one of them. Joint Pain. JOINT PAIN- from taking this teeny tiny pill!

I remember on chemo there where days when I had the most awful, horrible, crippling bone and joint pain. So severe that I couldn't sign my name. Even now it's almost surreal to think about what I went through. Most people can not comprehend how you can be 30 years old and not be able to walk up stairs. (The best part about documenting my cancer treatment here is that I can go back and read exactly what I was going through. It's not like a memory that I'm recounting and gets distorted over time. It's the real words and pictures from the moment it happened. On bad days (or days I think are bad) I go back and read my posts. it puts a little perspective on things.)

Anyway- back to the Femara joint pain. I started the Femara about 2 months ago. It seemed to alleviate some of the hot flashes and night sweats, and I started to just have "flushing" - like I'd get hot just in my face. It's not a huge improvement, but an improvement nonetheless. About 4 weeks ago or so I started noticing some pain in my shoulders and knees. I honestly forgot about the switch to Femara and thought maybe I pulled something or whatever. About 3 weeks ago I started noticing some MAJOR pain in my knees and hips. I then realized that it was the Femara. 2 weeks ago my THUMBS (yes thumbs) started aching. So once again I am finding myself in pain- having a hard time writing or grasping things. It's becoming a major discomfort to go up steps. And if I'm sitting on the floor and need to get up- forget it.

In addition to the joint pain from the Femara, I am still having the weight gain issues. It's just getting ridiculous now. Never - EVER - in my life did I have trouble staying thin! Between the medications, treatments, surgeries and recovery- the past 2 1/2 years have been brutal. Each time I get into a gym/exercise routine I would have another surgery (or sell 270+ Diaper Bag Wrangler items in 18 hours!). So now that all of that is past- I am trying SO HARD to get back on track.

This new pain is NOT what I want to deal with. Seriously-whyyyyyy!!!!!! I guess the "good news" is that since I started going back to the gym (all of a whopping 3 days so far) my knees don't seem to hurt so much. And I can run 1/2 mile without feeling like I'm going to implode, pass out or puke. Allright- I can run a little more than that but I'm "easing back into it". So I walk 1 mile and run 1/2 mile.

...and of course now that I'm getting back into the gym routine...I'm going leaving for a vacation in 3 days. And there's no treadmill at the hotel.

8 months post chemo...

Wow- one year ago I had my port surgery and was getting ready for my first dose of A/C. Things now are pretty much back to normal, Lilly is back in school, plus she's taking ballet and swimming lessons. Mike is gearing up for the e-commerce holiday season. I am doing the same ol', same ol'. Anyway- just wanted to give a little update.

I still go every 3 weeks for my Herceptin IV treatment. The side effects are very minimal, mostly runny nose, headaches, but I get a little fatigue now and then. It' probably not just from the Herceptin...I do tend to push myself to the limit from time to time. I also take Tamoxifen which has some annoying side effects. Since the Tamoxifen targets the hormone part of my cancer it puts me in a peri-menopausal state. Nothing better than being 31 and having mood swings and hot flashes....constantly. I plan on having an Ooforectomy within the next year so my Tamoxifen therapy will have to change after the surgery.

If you see me, please do me a favor...PLEASE do not ask me if my hair was curly before chemo. Yes- it was a little wavy, but not curly. Now- my hair is a full on Kramer 'fro. It has a mind and will of it's own. There is NOTHING I can do to control it, well, besides wear a headband everyday, that seems to help the best. It is thick and puffy and I really detest it. I have tried pomade, gels, anti-frizz stuff...nothing keeps it from towering to a full on afro by the end of the day. Now I am using a mini flat iron and TRYING to get it at least smooth. Some people actually like my 'do. Well, here's the thing. Sure-maybe it might look cute (to some people), but this is not my hairstyle by choice. Therefore- I resent it and just want my pretty, soft, mostly-straight, long(er) hair back. Plus I have the mother of all chicken wings on my left side. Not so much on the right side- but the left side- I might take flight if there's a strong breeze.

Today I'm actually having a "somewhat of a good hair day"... the humidity is down, my headband looks good...so I thought I'd take some pics.

Time for another haircut!

So here I am about 6 months post chemo. I actually used a mini travel sized straight iron on my hair today!!! I will do anything to keep it from turning into a fluffy, mophead mess. Lilly and I are headed to the salon today for our pre-vacation haircuts. I think my hair is finally long enough this time to get a shampoo instead of a squirt bottle wet-down.


Before:

Hair update - 5 months post chemo

My last chemo treatment was Jan 5, 2009. It's been almost 5 months and things are definitely getting better. My hair started growing back before my last chemo and it kinda grew/fell out for a few weeks and finally started actually "growing" in February. So here I am, 5 months later, trying to figure out what in the world to do with my hair. I hate short hair. I hate it even more when it's short not by choice. Well, it could be worse- I guess.

I got my first "haircut" in April- for my 31st birthday. It was merely an even-it-out, 5 minute trim. I wasn't even charged for it.

The time had come for another haircut. Although there's not much to cut, I hated the bushy, un-even, pseudo-mullet that was beginning to take form. The one thing I am learning about super short hair is that you have to maintain it like crazy.

Here I am before my 2nd haircut, May 27:



Post cut: Pomade-city. Slicked, super texture-y haircut and style. It was promptly washed out 2 times. I'm just not a fan of the "wet look".



Post hair- washing. No crazy pomade, just a funky headband.

TEE Update

My giveaway was just the right distraction for what was a totally lousy week. My friends all thought I was crazy to do it since I had so many extra doctors appointments scheduled. I just wanted to think about something other that that mysterious "spot" on my heart.

Flashback to last week, I met my new Cardiologist Dr. Wilner-

He's 34, went to Yale and is awesome! Ladies- sorry- his Main Line Heath Glamour Shot shows off his shiny wedding band, and he's got 2 kids....

Anyway- I met with my new doctor to go over the TEE procedure he wants to do since finding the 'spot" on my heart. Despite my Oncologist FREAKING ME OUT that it could be a tumor or blood clot, he was quite reassuring that it was probably nothing. Especially because he pulled up my LAST echo (from 9/08) and the "spot" was there. My question- uhhhh...how come no one saw it before....answer...that's why I'm your doctor now. We scheduled my TEE for the following week. Yea.....

Monday morning, bright and early - I had to report to Outpatient Registration at Paoli Hospital (or Le Hotel Paoli for those of us who spend a lot of time there). I was starving since I wasn't able to eat since the night before, and am anxious to get this procedure over with. They bring me back to the Cardiology area and get me set up in a "room". It's like an OR recovery area, all the procedures are done right there, so there's just curtain screen around each bay.

My nurse- Wayne- hmmm... is a jerk but not in a bad way. My main complaints- #1 I wear a FREAKIN' MEDICAL ID BRACELET...does he check it- no. Does he try to take my BP on the arm that the ID bracelet clearly identifies NOT TO USE- yes. DO I stop him- absolutely, I also asked 2 times for a purple bracelet- which is used to mark an arm that is not to be used for IV or BP Cuffs. Never got that bracelet.... #2 I asked for the IV team to be paged. I have a mediport and my arm/hand veins are really awful. Only certified nurses can access the ports, so I requested my IV be put through my port. He asks one of the other nurses if she can do it....she pokes me 2 times and can not get a blood return. Here's a reminder of what the IV port needles look like:

Finally the IV team nurse arrives and pokes me again, gets a good return and we're in business.

The sonographer tech arrives and the anesthesiologist swings by...and who do you think it is...my same anesthesiologist from all my other surgeries! He's awesome (I can't remember his name) and he's buddy-buddy with my Cardiologist because- big surprise- they both went to Yale. I get the "good stuff"- none of that crappy Versed...I want to be OUT! I remember the docs busting on each other for both having "baby faces" and I woke up an hour later to the sonographer asking me what my website was. Gotta love sedation!

Dr. Wilner said that everything is great- the spot is nothing- just a spot. Whew! FINALLY good news from a doctor! You get so bummed from hearing bad news, it's so nice to hear something positive! My throat is sore and I am coughing a lot. I ask for ice chips and unfortunately my coordination had not come back 100% and instead of them going in my mouth, they went down my gown. A little bit later, I'm still loopy and out of it but they pretty much kicked me out. I got dressed, got a wheelchair and checked out!

For the rest of the day I lounged around, slept and tried to rest my throat. It's 3 days later now and still a little sore, mostly on one side, so I'm sure it's just an irritation from the echo tubing.

Just when I thought things were going good....

Aside from the fact that I've been feeling crappy for about 2 weeks with this ridiculous cough/congestion/mucus, etc. I thought things were finally under control in my life. My hair is growing in nicely, I can do more than 1 errand at a time, my "chemo weight" is disappearing...then I realize that - yes - I am still sick. Not cough/cold sick, but cancer sick.

I'm not in denial of my illness by any means, I just focus on the positive and get through each day/week/month the best I can. I believe that the breast cancer is gone from my body and it will never return, but that does not mean I am 100% out of the woods. I am still feeling the repercussions of chemo and my ongoing IV treatment, in so many different ways.

Here's a little recap of this week...

Tuesday- 5:30pm - follow up echo cardiogram. I had an echo before I started chemo to make sure my heart and everything was able to withstand the treatment. I was very surprised when my report came back last September that I was in EXCELLENT heart health. Mostly because I've had mitro valve prolapse for almost my entire life....and now it's gone. So I (honesty) lallygagged about making my follow up appointment to make sure my heart was still standing strong from the Herceptin treatment. In my defense- I did get my echo done in the time frame my doctor required. With the Herceptin there is a risk for heart damage, and about 28% of women experience this. The damage can be reversed with treatment so it is considered to be an acceptable risk. So every 3-4 months while on Herceptin, you get echo or mugga scans to check things out. The echo takes about 30 minutes total and it's easy, painless and just a little messy from the conduit gel. After the echo, my Cardiologist reads the scan and sends the report to my Oncologist.

Thursday 10:30am - routine blood work. While on chemo I had my blood work done every 2 weeks. It wasn't so bad because I was going to Main Line Health and having the lab at my doctors office draw the blood. They are FABULOUS!!!! The entire staff is great. Then I started getting these bills in the mail for $87, $64, $27????? I called my insurance company and they said that the lab was billing everything improperly and it was considered out of network so we'd be responsible for payment. It turns out whoever was doing the billing, was billing me as herself and not the lab, so of course mrs. random-so-and-so employee is not in the medical database as a provider! IDIOTS!!!! My next call was to Main Line Health and I got the billing clerk on the phone (in all her gum smacking glory) and explained to her that I was not paying these bills and Aetna requested they be rebilled properly for payment. She said that she'd take care of it. I still have no idea it it's been taken care of....

Aetna asked for me to use Quest for my labs as they are their primary diagnostics provider. I was not too keen on that idea considering the LAST time I went to Quest, the tech got blood all over my coat when she went to switch tubes....not a good memory.... So I figured, I'm only going every 6 weeks now...how bad could it be. No more billing issues- I'll see how it goes.

So the first time I went for my 6 week blood sample, the tech (who is really nice, but not exactly the most skilled) blew through my vein on the first try, but got it on the second try. Ok...I can live with that. I had to go back for my 6 week tests again and I was pretty much prepared to get poked at least twice. Oh -how I wish I was that lucky!

FOUR- YES - F O U R - attempts to draw my blood, and they were barely able to get enough for my CBC. Twice in the arm, once in the hand, once in the wrist. Two techs, pediatric butterfly needles and tubes and a heat pack couldn't get that needle to go in my vein. So I had enough (and I had to get Lilly from preschool) so I decided that I'd drink lots of water and go back the next day.

Thursday 6:00pm - mysterious answering machine message. Lilly and I walked in the door from ballet class and there was a message on the answering machine not from MY Oncologist, but from the other Oncologist in the practice (who I have never even spoken to). Basically she said they received a call about me today and it's nothing "alarming" but she needs to talk to me about something. Of course it's too late to call the office, and it's not an emergency, so there's no sense in using the on-call service so I'll have to wait until the morning. I'm secretly hoping she wants to carry the chemo caps I make in the office, but then I strike that from a possibility. Maybe they got my blood results and saw that 1/2 of it was missing...no, the nurse would have called me about that....oh yes- my ECHO. HOLY F*ING CRAPBALLS! I know that whatever it is, it might not be life threatening, but it's serious enough for the Dr. (and not even my regular doctor) to call ME. So I do what I can- make a yummy mixed drink of Malibu Rum and Mango Juice.

Friday 9:00am - waiting..... I called my Oncologists office and they have to call me back. Big surprise there. I know it's about my Echo by playing "20 questions" with the staff. I love them. I know they can't tell me anything specifically, but I tried to get a glimmer of a hint...

Friday 9:30am - the call back. The Oncologist (not mine, for he's on vacation) called back and said the Cardiologist noted that everything is good from the chemo/herceptin. HOWEVER- there was a "fuzzy" area on my atrium valve that could be concerning. It could be nothing, but they need to check it out in depth to rule out (or find) a blood clot or tumor or possible endocarditis. I can't get a break! So on Monday, after my Herceptin IV treatment I am going to the Cardiologist to have my TEE (transesophageal echocardiogram) consult. The TEE basically is like a colonoscopy but in the other end. (joke). I need to get the details but from my understanding, it's a procedure where you are sedated and then have to swallow tubing so the camera can get in your esophagus and see the heart from a better angle. Yum.

Friday 11:00am - back for more blood. I told the Quest people that I REALLY, REALLY needed this blood drawing to go well today. And it did....first try, we're in....lots of blood flowing into tubes...all's good.

Hair growth update

It's been a little over 2 months since my last chemo treatment. I'm not crazy about my "new 'do" but at least it's growing! There's a TON of grey, but I think some of that is turning brown...I'm not sure what's going on with it. It's still to short to do anything with, although I have some texture pomade waiting in the wings for when it's a little bit longer. I think I'll need a haircut next week, it's looking kinda mullet-ish in the back. So far it's not "curly"... god how I hate people telling me about "the chemo curl".

I've been wearing ballcaps since the weather has been a little warmer. I realized today that I no longer have a University of Kansas hat. I thought about wearing Mike's but it was slimy with 10 year old aged sweat, so I threw it back in the pile. I have about 6 St. Louis Cardinals hats, but I'm pretty loyal to my baby blue Phillies cap these days. I'm planning on stopping by Lids and picking up something new.

I never want to hear about "curly hair" again!

Some people just don't know what to say to a 30 year old mom with breast cancer. However EVERYONE feels the need to tell me about their aunt, mom, cousin, sister, friend, grandma, or friend's aunt's cousin and how their hair grew back curly after losing it from chemo.

Yeah- I GET IT - chemo F*'s up your hair and it's never the same! I GET IT!!!! I had fluffy/wavy hair for my whole life, and until I understood the powers of a straightening iron I suffered through years of awful school and family pictures. So that last thing I want to hear (over and over and over) is how your hair comes back curly after chemo. Not on my watch! I'd rather wear my wig for the rest of my life.

So here's what my hair is looking like these days...it's short and fuzzy- like a "baby chick" (I hear that one a lot too).

the fuzzy head

Lilly: No I like your fuzzy head!
Me: You don't like my hair? Should I cut it?
Lilly: (grabs a picture off the dresser of me with long hair) No like dis!
Me: Should my hair be long again?
Lilly: Yes.
(end of conversation)

Well, I'm trying!

It's been about 7 weeks since the first follicular growth was spotted. A lot of hair fell out again, but I'm finally past that! My eyebrows and eyelashes are growing in pretty fast. I think in a few weeks I'll actually need shampoo again!



I'm starting to feel more like myself. Less puffy, less irritable, less tired. I still fall asleep on the sofa some nights but I am definitely accomplishing more during the days. I've been cooking dinner regularly which is something I haven't done since August!

We are starting to catch up on our home decorating projects that were put off last year. The previous owner of our house had AWFUL decorating taste. Lots of country-inspired wallpaper, bad paint and questionable window treatments. Luckily we could see past the decor when we looked at this house, which I think most people could not. Yesterday Mike ripped down all the wallpaper in our foyer and staircase. Thank goodness- it was an awful cream, burgundy and navy "country clutter" pattern. Here's a "before" picture (like before we bought the house when we first looked at it):



We bought paint last night and the chair-rail, doors, trim and banister will be a khaki/taupe color. Under the chair-rail will be chocolate brown and above the chair-rail and in the hallways will be an oatmeal/ivory color. Very chic and neutral. I can't wait...even Lilly is excited to paint!

Now all I have to do is convince Mike to rip down the "ivy garden" wallpaper in our powder room. Ugh.

New hair growth pics

I feel like I'm channeling Caitlin... except she's taking pics every week of her gorgeous growing belly and I'm taking pics of my fuzzy head. I'm on week 5 of hair growth...she's on week 29 of pregnancy...

So here's this weeks pics:






I'm starting to feel (and look) less puffy and more like myself. I lost about 2 pounds this week...only 13 more to go! My "original" eyelashes are completely gone. I lost the last 2 stragglers yesterday. I have some tiny stubbly eyelashes coming in and they are super itchy. My eyebrows are growing in and are itchy too. Basically all the new hair growing back is itchy....or the skin is itchy...whatever.

I'm still losing some of the fuzzy head hairs. I'm really getting sick of lint rolling my pillows every day, but what can ya do? It seems to be diminishing, so I'm glad I decided not to shave my head again and just ride it out. It's definitely growing more than it is falling out, so I'm taking that as a good sign.

Tomorrow I'm hoping to FINALLY join the gym. The registration desk is only open from 1-7pm, and unfortunately I can't get there at those times during the week. So tomorrow is the day! I can't WAIT!!! (ummm...I NEVER thought I'd say those words).