Race for the Cure - and a Delayed Race to my Cure



In my chemo chair, laptop out,
brother there ready to support,
before we knew it wasn't
happening today

Argh! Today I went to Presby with my two favorite guys (Ben and Ryan, my brother), all ready for round 2 of Taxol – which would be round 6 overall, with 10 more to go. The nurse poked her big hook needle through my port and drew my blood as usual, then took it to the lab so we could make sure my counts were good and we could get the meds started. However – today my labs didn’t come back as expected. I could tell by the nurse’s face that she was going to have bad news before she even said anything. A normal white blood cell count is between 4.8 and 10.8. Last week mine was 5 (already on the low end)….but today it was 1. (Yes, one!) So, the doctor denied me my weekly round of fun. Boo!!! To me, this just means that instead of finishing chemo at the end of June, it will be at least July, and if I had known this, I could have found something much more fun to do during Stella’s Mother’s Day Out day today! Just being honest! It was kind of like putting on your workout clothes, finding a babysitter, driving to the gym, getting geared up to work out, only to find out that all the machines are taken and you have to go home without accomplishing anything. Getting there is more than half the battle!

Ben at chemo today

Not to mention that with my white blood cell count this low, I’m at risk for getting infection – so I’m supposed to avoid crowds, germs, and sick people. They put me on antibiotics as a preventative, gave me a Neupogen shot to boost my WBC count (which I will get every week now), and sent me on my way. So, I’ll go back next week (Thursday or Friday, I’m still waiting to hear from the scheduler) to continue my fight. I guess the silver lining is that I won’t have my chemo hangover on my birthday tomorrow – but I still would have rather had one more treatment under my belt!

Parkeys before the race

In other news (much more fun!) – last Saturday was Race for the Cure! I can’t even begin to say how much fun we had and how supportive everyone was. Thank you to EVERYONE who participated in the race, helped organize our team and team shirts, and donated to Susan G. Komen. We had 25 people on Team Alli, and raised $6,760.00 for Susan G. Komen!!! Yes, that deserves three exclamation points – probably more!!! I know it was a big effort for everyone involved – getting up early, driving to Fort Worth, and contributing financially. A bunch of us went to lunch at Uncle Julio’s afterwards and it was the perfect end to a great day. Thanks again to each one of you – it means more to me than you know!

 

Some of my oldest (as in longest) and favorite friends!
Tiffany, Blaire, Marlo, Sarah,
Meredith, Kim, Alli, Anna, Ashley

Ben and Stella waiting to start the race
(nice shirts!)

Team Alli

Action shot during the race:
Anna, Meredith, Tiffany, Blaire, Alli, Ben, & Stella

 

Action shot during the race: Martin, Mom, Ben, & Stella

Ben, Stella, Luke, Angele, and Ryan at the finish line



Stella and Marlo at the finish line

Finish line: Ryan, Meredith, Kim, Sarah, Marlo, Tiffany, Blaire,
Anna, Stella, Ashley, and Alli

N-Ice to Meet You, Taxol

Today I went back for more chemo fun. I normally go on Thursdays but I moved this one to Wednesday so that I could have an extra day to recover before Race for the Cure this Saturday – yay! Thank you Andrea for taking me today – it was great catching up and having several hours of quality girl time, even though we were stuck in the Infusion Room! (And thanks for thinking of the creative title for this post - I told you I wanted to give you credit!) I am so glad to have the red devil and all its side effects behind me. Ugh! It literally makes me nauseous to think about it. I know I am in for a whole new round of side effects, but from what I’m told, they should be easier to tolerate. This new drug, Taxol, that I’ll be getting for the next 12 weeks, has some fun side effects: your fingernails and toenails can turn dark, lift, or come off. It’s not likely – but can happen. Or you can get neuropathy – pain, tingling, and numbness in the hands and feet – so they have you do cryotherapy to prevent it. That’s just a fancy way of saying I have to sit with my fingers and toes in ice! It’s supposed to prevent these side effects – but not totally proven. I’m always cold, but I thought it was worth it to keep my nails! A girl’s gotta do what a girl’s gotta do – especially when she’s already lost her hair! Last and definitely least exciting, this drug can cause me to lose my eyebrows and eyelashes. Boo! I’m just trying to remind myself that if I lose anything else, it means the chemo is working and it’s killing the bad cells too! Bam! So, this means I have 5 chemo sessions down, 11 to go. They will start going by faster now since they are weekly – no more free Thursdays for me!

I’ve had two nice women come up to me this past week and introduce themselves, and ask if I was a survivor too. The camaraderie in breast cancer survivors is amazing! One woman came up to a group of us at our monthly girls dinner at Nicola’s, and another one at Breadwinner’s when Ben and I were having breakfast. I thought it was so nice – I want to remember how sweet they were so I can pay it forward when I am down the road a bit and see other survivors! I’m also really looking forward to the Susan G. Komen race on Saturday – thank you all for your support! My goal is seriously to try not to cry all day. We’ll see if I can do it!

Want To Borrow My Mom?

(No that red devil is not my mom! It's the chemo! Keep reading...) Yesterday was round #4 out of my 4 hardest chemo treatments! Yay! I am now finished with Adriamycin (known as the Red Devil, since it’s a bright red liquid) and Cytoxan. I don’t think I’ll ever be able to drink Kool Aid again after seeing that stuff come through my IV and make me so sick. The steroids and anti-nausea meds from my IV are just about to wear off now, so the side effects of the last round of these 2 drugs will really start hitting me tomorrow. Then I’ll have 12 treatments left of a third drug, Taxol – they will be weekly, starting in 2 weeks, and should be somewhat easier to tolerate. The side effects will be different – neuropathy (tingling in your hands/feet), possible darkening/lifting of fingernails and toenails (meaning I’ll have to sit with them in ice during chemo, boo!), and I will probably lose eyebrows and eyelashes. For some reason this last one really got me – without hair, I feel like all I have left is my face – and now they’re going to take that?! Argh! Anyway, thank you Ben and Mom for coming with me to chemo yesterday! We’re starting to know the nurses now, and see familiar faces in the patient chairs each time we go. I don’t even really bring much with me for entertainment because we end up talking to the people around us. Yesterday I noticed that the young woman (yes, an anomaly in that room!) next to me didn’t have a visitor with her, so I told her I was happy to share my mom with her if she wanted. I have to say, it did get her attention! But not as much as when my mom handed me her Neiman’s card to buy some towels online with. (Because the ones she got us at Christmas were backordered then cancelled – don’t get too excited.) Then I told her that even though I'd share my mom, I wasn’t quite willing to share my husband. Hey, enough is enough, even when we’re stuck in the infusion room for so long.

Today I went back (as always) for my follow-up shot of Neulasta. It’s supposed to help boost my white blood cell count after chemo lowers it so much. It also makes my bones and muscles ache really badly, like when you’re getting the flu, times 100. I recently found out this teeny little shot they give me in my stomach costs $8,000! How crazy is that! And I’ve had 4 of them already. We could buy a car for that! And that doesn't even count my surgeries or the chemo itself. Good thing for health insurance.

Last but definitely not least, I want to mention that our little girl turned 18 months this week – 1 ½ years old! She is a constant reminder to me of how fast life goes by. Ben and I took her to a field of bluebonnets for a photo op, just like we did last year, when she could barely sit up. I can’t believe what a difference a year makes. I can’t wait until this time next year, when all of this is behind us!

The Cure

I cannot wait until there is a cure for breast cancer. I hope that in Stella’s lifetime, we will all be able to look back on this time the same way we look back on the days when the flu did not have a cure. If you get the flu now, no one thinks twice about it – you are just out for a few days, then you get well. My wish is that someday, when women get diagnosed with breast cancer, they will be able to go through the treatment – hopefully much easier than the surgery/chemo/radiation options now – then go back to their lives, without worrying about it coming back. Until then, I will do everything I can to support research and funding to get us there! I am so grateful to my wonderful friends who have just organized a team for the Susan G Komen race in Fort Worth. It’s coming up on April 14 and they have formed an official "Team Alli." I have never felt so honored. It’s already made me cry – I just hope I can keep it together on race day! If you want to join – anyone is welcome – just click here. An extra special thanks to Meredith, Anna, and Tiffany for going the extra mile putting this together, and to everyone who has already signed up. I can’t wait to see the shirt design! If you sign up on our team and would like a shirt, let me know and we’ll get one ordered for you.

Chemo update: I’ve been recovering from round 3, which was a little better than the first two. Maybe it’s because I knew what to expect, I’m not sure. It was nice having Ben take me again – I don’t know what I’d do without him! The side effects are definitely adding up – chemo wreaks havoc on the entire digestive system, but I’m doing my best to live life to the fullest between treatments. I got down to 99 pounds yesterday. Thank you to Ben for taking me for a big meal at Benihana! It’s weird to purposely order food with more calories (fried rice instead of steamed, etc) – but I am trying! I'm glad I only have one more round of chemo that includes the red devil. Then I will go for 12 weekly treatments of Taxol, which supposedly has different side effects, but may be a little easier to handle. I guess we'll see!

I got an e-mail today from my brother saying that because of my blog, a friend of his (L) and her friend (C) both went for mammograms. L’s came back clean, but her friend C’s did not. I want her to know my thoughts and prayers are going out to her right now – I am so sorry to hear of the diagnosis, but hopeful, because they caught it early, when she may not have gone in otherwise because of how young she is. And that is exactly why I am sharing my story, even when it’s difficult. My hope is that each of us who goes through this journey can touch a life and possibly save someone, until we find the cure.

Top 10 Benefits of Not Having Hair

10. I don’t have to waste 5 seconds pulling my hair back with a clip to wash my face anymore!

9. I save time getting ready in the morning by not having to fix my hair.

8. It’s not shedding everywhere anymore.

7. It will not blow in my face if I roll down the windows in the car!

6. I have lots of pretty scarves now. And 3 different wigs to choose from! Who do I want to be today?

5. I’ll save money on shampoo, hairspray, and electricity (hair dryer)!

4. Stella learned a new word: hat!

3. The lady who cut it all off at the salon said I look like GI Jane (1997 Demi Moore movie). (I’m sure she tells everyone that!)

2. Stella won’t remember this – and still recognizes and loves me.

1. Ben says I am beautiful no matter what! (and I’m doing my best to believe him!)

I’m just grateful this is only temporary. As my uncle says – my hair will grow back – his won’t! It should start coming back when I finish chemo, which should be the end of June. The countdown’s on!

Hair Now, Gone Tomorrow

You know that feeling you get when your ponytail’s too tight? And it’s been pulled too tight all day long, for about three days straight? That’s what it feels like right before your hair falls out. For the past few days, I’ve nearly filled up the entire bathroom trashcan every day with clumps of my hair. So, Ben stepped in just when I needed him and added hair stylist to his resume – on Sunday, he cut 6 inches off my hair! But honestly I only have a day or two left, even with this short haircut, before I become scarf/wig girl. It’s getting pretty thin. I really think the process of losing my hair strand by strand is much worse than it being already gone, so I just made an appointment for this Thursday to get my hair cut at the salon where we got my wig. They might be able to do a pixie cut if there’s any left - we'll see! And they will also fit my wig exactly to my head. Then I will officially be scarf/wig girl. But if I see you before then, ask my to do my party trick and I’ll pull my hair out for you!

Other than that, I’ve been recovering from Thursday’s chemo. It hit me on Saturday HARD. I was in bed, blinds closed, in my cave until nearly 5:00. It was different this time – instead of nausea and fatigue, it was a splitting headache, bone pains, body aches (like you have the flu, but times ten), nausea, and fatigue. But by Sunday I was moving around, and Monday feeling even better. It comes and goes in waves. Yesterday it was fun to have Stella’s cousin Ella come over for a playdate, with my aunt and my mom. You can see in the picture how much fun they were having, putting gummy bunnies on the window while I read a card from my aunt. (You can also see how short my hair is now! There is much less today though, since I took another shower – apparently the worst thing you can do when you are losing your hair.) And thank you Sarah, Lindsey, and Trammell for helping me feel normal last night! I’m looking forward to the next nine days of feeling even better, before I go back for more chemo fun, a week from Thursday. Trying to get some work done and rest when I can. As long as Stella and Ben still recognize (and love) me through all this, I’ll be ok – and I couldn’t ask for two more supportive people in the whole world.

Round Two, And Realizing My New Fear

Today was my second chemo treatment (14 more to go!). My sweet friend Ashley gave up her day to pick me up, drive me to the hospital, and sit in the official visitor chair next to my chemo lounge chair (sorry it’s not as comfy)! She even helped me pick up Stella from mother’s day out afterwards – good thing we have babies the same age and she had a car seat – we got there just in time. Today was almost exactly like the first time. I met with Dr. M., and she asked how I’ve felt the last two weeks. I told her my symptoms and she said I’m doing very well compared to a lot of patients! But then again – we looked around and noticed there were a LOT of older patients there – I mean oooooolder, with wheelchairs and canes. It really makes me realize how surreal this is that I’m going through cancer treatment at my age. But again, I feel lucky to be stage 1 and will do whatever it takes (however many rounds of poison!) to get me back to my healthy self again. I got my steroids, anti-nausea meds, Red Devil (Adriamycin), and Cytoxan (the second actual chemo drug)….made my appointment to get a shot tomorrow, then come back in 2 weeks, and we were outta there by 2:15! 

Most patients start losing their hair between days 10 and 14. So on days 10, 11, 12, and 13, I just pulled my hair and laughed – nothing! All there! Until yesterday (day 14)…..I started losing a few strands. They are now officially coming out when I run my fingers through my hair, 2 or 3 strands at a time – or I will look down on my shirt and see that 1 or 2 more fell out. Thank you very much Adriamycin and Cytoxan! It hasn't been a lot – but definitely enough to let me know what’s coming. I will be careful showering and blowdrying my hair, just to have a few more days of “normal,” but in the next 2-3 weeks, that will probably be it. I will call the salon where I got my wig and scarves to make my official shave-the-head appointment – or pixie cut? Who knows? But you know I will keep you updated!

Last but not least, I realized today I have a new fear. Not a fear of heights, or spiders, or anything normal. It’s a fear of not being able to repay all of the wonderful things friends and family have done for us lately. It honestly keeps me up at night now! (which defeats the purpose, I know, I promise I will try to go back to sleep) And my thank-you note list is only growing – which makes me feel guilty! But I know you all understand and will tell me not to write notes, even though you know I will – so just please know they will come one day. Today alone, I had my husband, mom, and brother e-mailing/texting/calling me all day to make sure chemo was going ok, Ashley there with me, 2 cards in the mail, cookies on my doorstep (thank you Joy!), a package in the mail this afternoon (thank you MB!), and countless friends checking on me. This weekend we have friends bringing us dinners – on the exact days I know I will feel the worst and not feel like cooking. So, as my first entry in the Journal of Gratitude I received today (thank you MB!), I want to say one more time that I am eternally grateful for all of your support – it’s what gives me the strength to fight through all of this – and I honestly look forward to recovery, just so I can put my soon-to-be-bald head to work when YOU all need something next!