Mindfucking Yourself

Yep, I said it-mindfuck yourself. I think it can be one of your biggest tools against cancer.
You tell yourself:
“oh chemo is no biggie. It’s just another cold or flu I have”
“I have cancer because I saved someone else from having cancer. I’d rather it be me than someone who has kids or someone who can’t handle it. ”
“Losing my hair isn’t a big deal. My eyelashes and eyebrows and even my hair – I can fake that. And, hey, now I don’t have to shave”
“This pain is temporary but it’s showing who my true friends are-that saves me from pain in the future by losing fake friends”
“Worse could happen – and it can. I should be thankful for what I have”
“Appreciating life and the lil things is what this is showing me”
So I reckon not all of this a mindfuck. A lot of it is true and something I genuinely believe in.
Whether you have to mindfuck yourself or focus on the positive or focus on your faith -whatever it is – it got me through. It can get you through too. Just don’t ever stop fighting.
When that “cold or flu” comes around, you act like it is a cold or flu. You fight. You focus on the positive. You KNOW you will get through it. You gain strength from your true friends and your faith. And when you know a new “cold or flu” is coming around, you gather up all your energy. You make the most of the next 2 days. You appreciate every moment. You create special moments. And those special moments will get you through the next “cold or flu”. And you just have to lather, rinse, and repeat.

Ps sorry for all the typos. Did this on my phone since I no longer have a laptop. 😉

My Second Double Mastectomy

So to bring you up to speed….

I had a dub mast on the last leap year – Feb 29th. I had chemo. I had expanders (temporary implants) put in. Every week plastics uses this huge ass needle to inject more fluid in the expander so your skin can grow to accommodate  real implants. I finally had implants put in. The bridge between both implants broke. So I essentially had one huge implant. The highest peak from each boob went straight across; you couldn’t even see my chest plate. I had those implants removed and smaller ones put in. I developed a SUPER RARE (of course) infection called vibrio. You contract vibrio from eating raw shellfish. I have not eaten raw shellfish nor did I put raw shellfish in my boobs. I had surgery to take the implants out and rinse them out from the infection. Then I had a picc line (tube that goes in your vein to IV deliver meds above your heart) installed. The line essentially went from my elbow to around my armpit to just above my heart. It is so gross. I had 3 IV meds through that every day that my bestie had to administer. I went through 3 weeks of that meds and 2 weeks of oral antibiotics. The day I was cleared from the infection to get my last reconstructive surgery, I came home and my shirt was covered in blood and infection. When I told my Dr, he said – you have to have the new new implants removed, and so I had my SECOND double mastectomy. I am sure many of you wonder what a dub mast (or as I say, dude boobs) look like – so here you go….

STOP HERE IF YOU DON’T WANT VISUAL——

 

 

 

I am starting over (after ALL of above) to ground zero on my reconstructive surgeries. That’s adding a year to my whole cancer process. Shit, at this point, I am going to be 5 years cancer free before my reconstructive is complete.

Anyway, above pic is me holding my drains with a wannabe ponytail because my hair hasn’t grown back from chemo. I try to stay so positive about this experience. But, Lord, help me. I am running out of positivity and strength. Who gets TWO double mastectomies? What are the odds of getting cancer in my case anyway? Who gets VIBRIO (out of all things) in their implants?

You would think I must have awful karma. You would think I must be super awful to everyone I meet. But I don’t *think* I am. Why do I keep having this bad luck? Don’t get it.  What do I need to learn? Am I missing something? So many questions and nothing but more pain and more surgeries and more immune problems from those, thus more sickness. I just want things to go smoothly! What do I need to do for things to go smoothly?! I wish there was an easy guideline to follow. But since there isn’t, I must continue to be strong, let bad news roll off my back, stay focused on the positive…My mantras are starting to lose their impact though. I am tired. I am tired of hurting. I am tired of being sick. I am tired of bed rest. I just want to feel normal!!!

My brother came over today. He helped change my gauze from my drains and helped wrap me back up (pressure on the dub mast so no fluid buildup) and in the middle of it, he said “If it makes you feel better, at least you didn’t cut your finger.” (He cut his finger on a bottle a few weeks ago.) For real?! Are you really going to compare a cut finger to a second double mastectomy? I can’t even remember how many surgeries I have had in the last few years, but “at least I didn’t cut my finger open on a bottle.”

I know he didn’t say that to hurt my feelings or anything. But it did remind me why I stay so strong and I try not to bitch. There are so many other people out there who have it way worse; who would view my circumstance as the “cut finger” in comparison to theirs.

I am sorry I am babbling. I know there’s no flow to this story. I just needed to get it all off my chest.

 

 

Update

Got some not so good news last week. I have osteoporosis in my left hip and my lower spine and I have to completely redo my reconstructive surgery. I have been real from the get-go, and I am not stopping now – so either stop reading, or here we go …. I will lose my last REAL nipple in this new reconstructive procedure and will have drains in again for at least 2 weeks. Drains are like tentacles that come from your boobs like an underwire part of an underwire bra but they h…ave balloons on the end that collects blood/fluid. They have a little flip top on them like some water bottles and you have to drain out all the fluid – measure it – and show your measurements to the surgeon at post-op. Last time, I was supposed to have drains for 2 weeks and I had them for 6. When I was talking to my #ATLMoCs, I said, “I think once you have cancer, it’s like a shadow. It really never goes away.” At the time I first thought that, I was thinking as much as you don’t want to be defined by something, the reality it is that those definitions still follow you. And now I am wondering, cancer itself never stops following you either. My girlfriend (who is also a young woman) is having identical issues.
…..On the flip side, Barbie seems to be doing really well for herself, and she doesn’t have nipples. And it can always be worse. I truly believe that. …But I wouldn’t mind having a break for a couple years of some easy livin’ either.

Things to Buy Chemo Patients

It seems like when people find out that they know someone has cancer, they want to help in some sort of fashion. But if you haven’t been through cancer, you have no clue what to get. So this list is to hopefully help you get your cancer friend things they will actually need/use, or help them financially by providing these items, while they’re going through their journey. OR maybe you’re going through cancer and you’d like a list of things you should buy beforehand. A lot of these items will apply to breast cancer patients, specifically, because that’s the only cancer I am familiar with, but most of the items (you’ll know which ones) would apply to anyone going through cancer.

• Wigs
  • The wigs I ended up buying were no more than $70 and as cheap as $25. It makes your cancer friend (CF) feel beautiful and try out some new styles/colors they may never would have thought of about trying. If you’re bald, you mind as well make the most of experimenting!
• Gift Card to a hairdresser
  • Wigs come in every shape and size, so a professional will need to cut the wig to make it fit/wear perfectly. Plus as a chemo patient is losing hair, or as it starts growing back, they’re going to need a professionals help.
• Toboggans/One-Size-Fits-All Baseball hats
  • You’d be surprised how cold your head can get when your bald, especially if you’re used to having long hair. Toboggans and the one-size caps (because they don’t have the plastic adjustable feature which can irritate the very sensitive skin of a chemo patient) are great! Wigs can take some effort to put on, so when you just want to run the store quickly, baseball caps and toboggans are an easy way to get you to the store in style!
• Mouth Wetting-Dry Mouth-Lozenges
  • I know it sounds weird, but you get dry mouth so easily when you’re going through cancer!
• Lucky Charms
  • Not the cereal! But small things they can take with them to their appointment that has some sort of special significance. Most people pack a chemo bag and I always brought my lucky charms with me. The ONE time I forgot it, I ended up in the hospital with heart conditions. Some lucky charms I received were dog tags, coins, my lil cousin gave me her special rock, accessories (ie a bracelet that says Strength), etc.
• Portable Hand Sanitizer
  • It’s really important for chemo patients to stay as clean and germ free as possible. My Mom bought me a bunch of small tubes of hand sanitizer so I could put them in my purse and take them with me wherever I went! They are life savers!
• Surgical Masks
  • Again, we gotta keep the germs away from us. So, having surgical masks on hand when we go to the store, doctor’s office, etc can actually save your CF life! Plus you can use them later when you’re bleaching the bathroom! 😉
• Ace Bandages
  • If your CF is going through cancer, they’re going to end up needing these more so than you think!
• Lysol Wipes
  • Especially if your CF has kids. They bring home all kinds of germs. And it is so easy to get extremely ill when you’re on chemo. Lysol wipes to wipe down everything frequently! They are your CF’s new BFF. Wipe down toilet handles, light switches, faucets, doorknobs, etc as often as possible!
• DermaTape
  • Gotta keep your chemo port protected from germs.
• Bandaids
• No Natz/No Mosquitos/Avon Skin-so-Soft/Benadryl Cream
  • No Natz and No Mosquitos and Avon Skin So Soft are a lil pricey but, believe me, if you are going through chemo, you’re going to want this on hand. When a chemo patient gets a bug bite, instead of it being a quarter size lump, it’s more like a lump that’s the size of a balled up fist. I live in FL so bug spray was SUPER important to me. What’s great about Skin So Soft is that it smells great and actually keeps the bugs away.
• UV Buff with Insect Shield
  • This is a cool wrap thing that you can put on your bald head. It protects you from UV rays and insects! Again, bug bites when you’re going through chemo are exponentially larger than usual. And your CF will not a fist sized bug bite on their head!
• Icepacks
  • I like the Peas brand. If your CF is going to have a lot of surgeries, he/she will use this A LOT.
• Good Lotions/Hand Soaps/Face Moisturizer/Exfoliating Scrub/Sunscreen
  • Hypoallergenic. As organic as you can get. Your skin will dry out easily! Lube up! I loved a sugar scrub exfoliator with lavender throughout my chemo.
• WaterPik/Baby Toothbrushes
  • Your gums get so sensitive. A WaterPik is your BFF vs having to floss. And baby toothbrushes are super helpful too. A lot of them these days will sing to you so have fun with it. My favorite when I was going through chemo was my Dora the Explorer toothbrush! Lol.
• Spray on Deodorant/One Use Makeup Tools/New Makeup
  • You don’t want your skin to come in contact with things you use over and over again like a regular deodorant, because it can give you an infection. You can’t use lipstick. You can’t use the same eyelid tool. You can’t use the same blush brush. Similarly, you can’t use the same stick of deodorant. So get some spray on stuff and a bunch of throw away tools for your makeup. New makeup-because your body changes a lot when your CF is going through chemo. It’s nice to feel pretty!
• Good Fingernail Polish/Tea Tree Oil
  • Some chemos will make you lose your fingernails and toenails. Get a good fingernail polish and use tea tree oil to keep your nails as long as you can. One of my friends that went through chemo, smoked during chemo. The only nails that didn’t fall off were the ones that were on her smoking her fingers. So get some tea tree oil and rub your nails with it, then get some “chew tobacco” and rub your nails with it until they are yellow, paint them a good base, color, and finish, and hopefully your nails won’t fall off!
• Cold Hands/Cold Feet
  • Neuropathy is one of the biggest side effects of certain types of chemo. They make these icepacks that are like icepack socks and icepack mittens. When your CF is getting the chemo, they can wear these and it reduces their risk of neuropathy. I used it and I occasionally have nerve flare-ups, but it’s not even comparable to others who didn’t use it.
• Seat Belt Protector
  • For your CF friends that have breast cancer, know that seat belts are our enemy. But also essential. It’s a tough spot to be in. I know it sounds weird but if your CF has expanders or reconstructive surgery, the sensation of a seat belt can cause extreme pain. Get a seat belt protector – a soft pad that makes the seat belt not hurt so much – it is a necessity!
• Comfort Bath Cleansing Washcloths
  • These are essentially like baby wipes, but you heat them up in the microwave and they act as a shower. Depending on your CF’s surgeries and strength to get in the shower, these are essential! Chemo patients gotta stay clean, but there were multiple times I couldn’t take a shower per Docs order and this was my only way to “take a shower”.
• Shower Stool
  • This was super helpful for me to wash my hair (when I had it) for those times that I wasn’t allowed to take a shower. And it came in handy later for the times I was just to weak to stand in the shower and bathe myself.
• Safe Box with Keys
  • You’d love to trust your friends and family that are taking care of as you battle cancer, BUT it’s surprising how that trust is so easily so broken. Put your pills in a locked safe box from the start and always keep the keys on your person. When you’re going through so many surgeries and cancer, the last thing you need to deal with is a loved one stealing your pills or you being miserable because they did steal your pills. Get a safe box from the start and protect yourself from heartache and actual physical pain.
• Pill Box
  • Go ahead and plan out the whole week. Any CF is going to be on a lot of pills and vitamins. There’s so many for every day, it’s kind of depressing. But since chemo patients don’t have the best memories, this is a surefire way to make sure they don’t forget anything so they can remain healthy throughout their journey.
• House Robes
  • Just do it! That’s all I gotta say.
• Fuzzy Socks
• PJs/Button Ups
  • PJs you can wear in public are a home run. I wore a lot of scrubs, etc. so I didn’t look stupid going to my Drs Office but I was still comfortable for my appts, surgeries, chemo.
• Big Teddy Bear/Body Pillow
  • I used this so I wouldn’t roll over in the night on my surgery spots.
• Travel Pillow
  • Cause the car rides home can be painful. And if you just had a surgery or chemo, you’re probably going to sleep the whole way home. I got a great one made by one of my adopted mamas. Love you, Mama Wende!
• Blanky
  • You’ll use this on car rides, at chemo (esp if you have to do cold hands, cold feet) etc.
• A Chemo Sweatshirt
  • I got mine from FordCares.com. It has a nice scoop neck so I can pull it down to access my chemo port without having to take it off. BEST chemo item EVER!
• Chemo Bag
  • Just like women pre-pack a bag before they have a baby, every chemo patient should have a pre-packed bag for their chemo treatments. Often the chemo sessions are once a week, so having a good bag is a lifesaver. Pack it with your lucky charms, lotion, hand sanitizer, pills for 2 days (in case they make you stay overnight), magazines, headphones, an extra pair of clothes – For example, I would wear shorts and a tank top before chemo because it was so dang hot outside, but I would also bring some PJ pants and my chemo sweat shirt to throw over my clothes once I started chemo, because I would always end up freezing.
• Bluetooth Headphones
  • This will allow your CF to chill out while they’re going through chemo without having to worry about strings everywhere!
• Journal
• Essential Vitamins
• Make Appreciation Jar/Encouragement Wall
  • I used a mason jar and decorated it as my appreciation jar. Every day, I would write down 1 thing I was super appreciative for that day to keep me motivated throughout chemo. My dad also started an encouragement wall for me. After my double mastectomy, he made a poster that said “You are the strongest!” and hung it up on the wall that was across from where I sleep. He knew I would spend a lot of time in my bed and would be looking at the wall. As I went through chemo, I added favorite bible verses, other encouraging letters, etc from my loved ones, post cards I received. When it was a bad day from chemo, I would lay in bed and stare at that wall to make continue to be strong. 😊 Thank, Daddy, for the best idea EVER! 😊
• Hire a Cleaning Service
  • This would be an awesome gift for any chemo patient! It’s surprising how worn you can get just doing the most simple task. Having someone come help you clean will surely be appreciated!
• Making Dinners
  • One of the things I was so lucky to receive was homemade dinners from my oved ones. Like I just said, it was SUPER hard to do simple tasks. So cooking was completely off my list of things to do. Luckily, I had several friends and family that brought me cooked meals throughout the year. 😊 It meant a lot more than they probably realized. You know who you are! And I LOVE you for it! 😊
• Donate your time
  • see what your CF needs help with, offer to drive them to appointments, offer to take care of them after surgeries – you get the idea! 🙂

 

Quick Update

I am feeling quite emotional tonight. I normally write to you when I am feeling very strong, which is most of the time, fortunately, but I also want you to see at my weakness. If you’re reading this, you probably have cancer too and are probably experiencing the same flows of positive and negative emotions as I am.

This (as pretty as anyone can picture it) is not an easy journey. For me, most people are diagnosed with the kind of cancer I have 20-30 years after my age. So, for my cancer and at the age I have it, my concerns are different – I can never have children. I am menopausal at 30 yrs old. It’s not just the cancer I have to deal with. It’s never being a mom. Having hot flashes out the rear end 20 years before I am supposed to. Having no hair – and Lord knows when I expected that one to come around – but it sure wasn’t in the next few years. Being tired like I am. I have to worry about osteoporosis or osteopenia. My boobs have been sliced and diced – I look like Frankenstein. I feel like two giant aliens live in my body – implants are NOT what they are sold to be, so if you’re consciously making the choice to have implants PLEASE talk to me first! There’s nothing like your real boobs.

*sigh* There is no way for me to relay to you, your family, or any family googling this, about what a young girl is going through with advanced breast cancer. It IS heartbreaking. And while we are probably the toughest Badasses that you know,  we have our moments of weakness too. Just support us and love us. XOXO

14th Chemo-The Os Gotta Go!

The Fourteenth Chemo – Deciding to Lose the Ovaries

Monday, Aug 22, was my 14^th chemo.

Aug 22 was supposed to be my last chemo, but in the beginning of July, my body took a poop on me and I missed two chemos, so it was my 14^th chemo instead. I told my doc before my chemo “You know it could be my LAST chemo.” He said, “Good try”.

I remember at the beginning of the appt, Doc  asked, “How are you doing?”…“I kinda feel like I am dying.”…“Well, that’s normal after 14 chemos.” We had a good lil chuckle about that.

We talked about how we were moving forward from here….

My cancer was estrogen and progesterone positive. AKA my ovaries are the bad guy playing a big part in my breast cancer development. So, if we leave the Os (ovaries) around to play and do their own thing, the chances of my cancer returning is higher than me or the docs would like to see. 😦

It’s weird to know your whole life that you have certain parts of your body for a reason – but extra weird to realize they could be parts that are killing you. Weird, right?

So, Doc says, here are my options – ALL of which BTW are to keep me in menopause (yes, chemo has already put me in a perimenopause – SO MUCH FUN, but I will have to tell write about that in a different entry) 1.) take Tamoxifen or 2.) have ovarian suppression. With Tamoxifen I would have to take a pill once a day.

With Ovarian Suppression, I could

a.)  do a monthly injection of Gasorelin for 5-10 years + Anasrozole, a pill once every day

Or b.) have the Ovaries (the Os) removed + Anasrozole

Here’s my thought process as I looked around the room in response to this:

Obviously, Tamoxifen sounds like the winner. Skip surgery, skip monthly injection, and either way I gotta take a pill every day, right? Well, in my case, all the drs (oncs, OBGYNs, etc) I talked to before had already told me that with my kind of cancer ovarian suppression is the best thing to do, which kicks the #1 Tamoxifen option out the door.

Leaving me with only option 2. But option 2a or option 2b? Side effects? “You’ll basically have the same hormones as a man and all the side effects of menopause.”…“Awesome, so basically I am going to be a man with a 50 year old vagina when I am 30?”…“Well, you’ll just be like a 30 year old man.”

*Disclaimer – I am not hating on 50 year old vaginas – I am just saying I am 30 and menopausal, which is supposed to happen at 50! (thus the term 50-year-old-vagina).

Menopause is a true bitch. The hot flashes are constant. I can’t sleep well because it’s like buckets of water being dumped on you all night and you’re super hot but then you’re sheets are so wet that once the AC kicks on, you’re super cold cause you’re laying in wet sheets. And the heat from flashes hurts your face like pins and needles sticking in you. My skin literally melts off. Like I can wipe away the sweat and skin comes with it. It is absolutely disgusting.

SO I am not going to lie- when he told me I would be in menopause forever, I cried. I told doc, “I didn’t even cry when I found out I had breast cancer, but tell me I get to be in menopause for the rest of my life and look at me.” It is truly a sad thing. I am sure chemo menopause is different than the regular kind – I don’t want to scare anyone from regular menopause, but I also promised you all to say it like it is and, to me, this is truly how it is. And it really, really sucks. Because my cancer responds to female hormones (estrogen and progesterone), I can’t even take the drugs people get to help them get through regular menopause. So I am stuck forever with menopause side effects. Lord, please let there some break through for those like me who can’t get relief. And for all the families who have menopausal women in their life – you better cook, clean, do laundry, get ready for some serious mood swings, and hug her tight even though it seems like that is the last thing she wants. At least for me, hugs cure almost all things menopausal…temporarily.

ANYWAY, At the beginning of my breast cancer journey, they did a PET scan to determine where I had cancer throughout my body (I guess – I am not a dr and I have chemobrain, so please don’t quote me on stuff). It came back with some stuff pretty much everywhere, but of concerning note, was obviously the breast, the lymphnodes, and my left ovary (among other things that I hopefully don’t need to worry about). The ovary in a PET scan should be considered a normal range when it is a 5 and mine was a 19. “It lit up like a Christmas Tree!” my doctor said. AKA something is seriously wrong with the left ovary.

I talked to a few drs about the left ovary and they said that my breast cancer was not the kind to have spread to my ovaries, so it looked like, at the time, that I was also dealing with ovarian cancer as well as BC.

Docs had an ultrasound on both ovaries and they came back fine, so my drs were still puzzled. “If the ovary is fine, why is it lighting up so much in the PET scan?” They tried to do a laparoscopy on the ovary at the same time as the double mastectomy, but scheduling didn’t work out. We decided since the ultrasound came back fine, we would focus on what we knew for sure I had now – breast cancer.

And actually, I forgot all about the ovaries…they also found a small cyst/tumor thing in my brain and they had said we would address/monitor after we were done with breast cancer…I forgot about both of those until a couple weeks ago. Instead, I was basking in the glory of almost being done with chemo…and then I was like “oh yeah, I have the other things to worry about too”.

Anyway, removing the Os at this point sounded like the most logical idea. We already thought I had O Cancer anyway and it was option 2b in keeping me in menopause for BC, so we talked about it a little more. Doc had said for hopeful mothers, they don’t usually bring it up losing the Os, but since I had turned down fertility treatment before I started chemo, that it was another logical option. I wouldn’t have to have monthly injections (the Gasoreline stuff) for 5-10 years if the Os were gone and the side effects may be better vs the injections.

I made my decision in all of 5 minutes.

• I had been off birth control since 2010 and never got pregnant.

• Chemo has the potential to make you extra infertile. So they offer fertility treatments (talk about that another time) but I turned it down since I hadn’t gotten pregnant since 2010. What’s the point of saving something that doesn’t seem to work, right?

• If I did the Gasoreline injections instead, I would be like 45 by the time I actually try to have kids and then there would be IVF and high risks for complications. I mean I am supposed to be getting the kids OUT of the house at 45 not having one.

• According to my PET scan there is definitely something wrong with the left ovary anyway and it does cause me pain. I Could NOT deal with ovarian cancer back-to-back after breast cancer.

• The Os are the reason I got cancer in the first place and could be the reason I get it again, whether breast or ovarian cancer.

Thought process over. I said, “Let’s yank those fuckers.”

So we decided to start the Gasoreline injection starting the day of my last chemo. I will start the complimentary pill Anastrozole a month later. Continue the injections until I find a surgeon for the oophorectomy.

You know, I have dealt with the fact that I can’t have kids for a long time now. I could never get pregnant before, and they make it real clear before you start chemo, they want you to do some type of fertility option, which I turned down. And then I started menopause back in May. But I guess when you decide to take the organs out you really lose ALL hope of having a family, you know. It’s sad. I hate watching baby commercials. I feel like I would have made a good mom. And I am jealous that I don’t get to experience getting pregnant with someone I love. BUT honestly, if I had the option still available, I don’t know if I would actually take it. It’s just harder once the option is gone.

It’s funny, I always told myself if I didn’t get pregnant by 28, I wouldn’t have a baby. That was my deadline for my life plan. And damn if I wasn’t diagnosed with all this as soon as I was 29. LOL. I think I am secretly psychic with my life. I mean I even knew for years I had or was going to have breast cancer.

Anyway, back on track, there is something wrong with the ovaries anyway, and I really don’t want to deal with O cancer after just having dealt with BC, and they caused my BC, and could cause it again, so I will save myself 10 years of monthly injections vs saving some organs that no longer serve a purpose in my body anymore – the Os gotta go!

 ***

I am finally posting this after chemo was complete (WOO HOO), but wrote above the day after my 14^th chemo. I guess looking at this post now, all I have to say is, I was trying to find strength in my decision to lose my ovaries. I know it is the most logical decision, but the ovaries make you a woman, you know? It’s just like if you asked any patient, “Would you like to keep or lose your hair during your treatment?” I guarantee you, we would all say, “Duh! We want to keep our hair!” Hair is like ovaries – we want to keep it. It’s what makes us a woman. But it’s not my hair and it’s not my ovaries that is going to keep me alive and away from future chemo and future surgeries. I would never want to put my family through this again so as I ended the post originally on Aug 23, I will end it now on Sept 18, with the same phrase – “THE Os GOTTA GO!”

Losing My Hair-Part 1

I am skipping around a little bit, before I forget what’s going on right now, and jumping to losing my hair. Of course, I knew with my chemo I would lose my hair. At this point, I had already had my double mastectomy and had expanders put in. Expanders are like temporary implants – I will talk more about those in another blog post. But I had already gone through losing my breasts (one of the important things that makes you feel like a woman) and now the second biggest thing that makes you feel like a woman (hair) was on its way out of the door. I had many people tell me to shave my head before I started losing it. For many people, it was a very devastating experience for them and it was really hard to just have it fall out in clumps. I decided if I was going to have cancer and have to go through all these huge changes, I wanted the full experience. I wanted to know exactly what it felt like and looked like and the whole kit-n-kaboodle. That probably makes me weird, but I wanted to build my own experience out of it.

So for those of you who will have to go through the same thing, it starts out slow. Like you’re a dog shedding your summer coat. It didn’t really freak me out because I knew it was going to happen. I don’t think I realized that it would fall out that quickly, but I had a lot of warning from my girlfriends who had gone through chemo that it would. After my second chemo, I remember laying in bed, feeling like crap, and I said to Mike, “Babe, I am going to bald soon.” And the next day the clumps started happening. You can check it out in my video below. It was weird. I mean it comes out all gray and dead and legit in clumps. It gets tangled really easily because it is falling out. So it was hard to manage at that point, I was kind of glad for it to go. I held on the fact that I really enjoyed not having any boobs for awhile so maybe I would enjoy not having hair too, you know? I had really long hair, like past my boobs, so the first thing I noticed was how much lighter it was. And it felt good! But it quickly got very very thin.

So the day after the video, I let Mike cut my hair. I figured how often do you get to have your boyfriend cut your hair?! He did a really great job!

But that only lasted a day before I was looking very Tales From the Crypt. Eeek! So it was back to the “cutting board” :oP

We tried the mohawk. But my hair was too thin. SO we went with the buzz cut and settled on that….well, for a couple weeks anyway. More to come later!

 

 

 

 

The Breast Biopsy

*The Breast Biopsy*

I was back at my favorite place – the place I was diagnosed with breast cancer – the place where they say they don’t even diagnose breast cancer without a biopsy, but in my case it was so advanced they were able to tell me the same day.

They still had to do a biopsy to figure out the treatment plan and determine what kind of cancer I have, etc.

I don’t really remember scared. One of my coworkers had it done and said it wasn’t anything. I was kind of excited really because I knew they would numb the mass and it was so painful all the time, I was excited to get some relief for a couple hours. I do remember having this strange fear that they were going to go in there and pull out bugs or something. Thought it was cancer – surprise! You have a large nest of bugs in your boob. I am so weird, right? But I think that was the only legit thing I was afraid of. My uncle had a moth stuck in his ear when he was a kid and I read about how you swallow 7 spiders a year or something in your sleep so I have developed this weird fear of bugs inside me when I was young and obvy still have that fear. Lol.

Anyway, it was pretty much a lot of the same thing. Sitting in a waiting room with a gown on waiting to be called back.

They had to do an ultrasound first and mark where they wanted to insert the biopsy needle thing and I started getting anxious then. When I was waiting for the biopsy thing to start I was like y’all better let me try to pee first because I don’t want to pee on y’all through this. When I had my belly button pierced it hit a weird nerve that made me feel like I had to pee so I guess I had that on my mind.

So they tell me they are having a resident do the ultrasound and the doctor was going to come in and do the biopsy. “Here’s some papers to sign.”

So the resident and nurse and doctor are in the room and their ready to start numbing up.

You know how when you are taking photo shoots and they put you in a really uncomfortable position and the photographer is like “just stay like this, I know it’s uncomfortable, but the pic will look great and you only have to hold this position for like 2 minutes” but those two minutes feel like FOREVER cause it’s a super uncomfortable position. Well breast biopsy position is like that…only for an hour. So you’re like laying on your side sort of but then twisted here and there and you’re your arm has to hang back over your head. Your essentially in a dentist chair so your arm has nowhere to rest. It’s just laying there limply behind your head. It essentially feels like you are in one of those medieval torture contraptions where they would tie up your legs to one side and your arms to another and stretch them out.

Anyway, miss resident starts numbing me up and I am thinking ok I thought the dr was doing this. Maybe she is just numbing me up and then the doc is going to jump in. Well doc never did so ladies beware should you ever have to have one done – do NOT just sign the papers that “only give them permission to operate on you”. So they’re numbing me all up and it hurts a little but not too bad …… and then they get to the mass. This chick’s hand is shaking like crazy. I find out this is her first time doing this. So now I am really nervous and she’s just starting to freak out, because she can’t get the needle in the mass. “I am pushing as hard as I can and it won’t go through”. Doc says” Yeah sometimes the mass can be too hard for the needle to penetrate”. Awesome. Doc never jumped in and tried to do it herself – hello? This is this chick’s first time, you have tons of experience – just a thought but maybe you would be able to numb it, doc? So then they get to the biopsy part. It was essentially like a core drill. They drill a hole in you and a lil thing spins around and knocks off tissue and a needle comes down scoops up the tissue debree. “Oh you’re so lucky we are using this tool on you – it’s virtually painless.” Well, I bet it is when you can numb what you’re drilling a hole in to. Let me tell you, the pain was insane. I was holding the nurses hand and she’s hollering, “Hey! Hey! It’s hurting her. It’s hurting her.” That poor lady and her poor little hand. I felt like the wife giving birth demolishing her husband’s hand only I couldn’t yell at this lady “This is ALL YOUR FAULT!” like wives do with their husbands. Haha. So after getting this drill in my mass and crushing the nurse’s hand, they decide to take the drill out, and try numbing it again. Obvy after someone has already drilled a hole through your body it is not like you want things constantly going in and out of the same hole. Well, surprise surprise, they still can’t numb the mass. In goes the drill again and more hand crushing and they try to stop again to try to numb it again. And I was like “NO! You are in there, let’s get this shit done.” They looked at me like I was crazy. “Are you sure?” I said, “Yep. You’re in there. We are getting this done. I can handle it.” And then the drill starts to spin around to start knocking off the tissue. I was shaking more than I have ever in my entire life. I thought I was going to pass out. Here I was all excited originally thinking the mass would be all nice and numb and I would have some relief from the pain, and instead I got to feel every bit of my beloved booby getting core drilled.

We had talked previously about how the docs are most likely going to want a lymphnode biopsy and I had decided at the beginning of the appointment I would rather go ahead and get it done while I was there just in case they did need it – save me from having two surgeries. Well when they got done drilling my boob, I completely changed my mind about the lymphnodes. I had had enough for the day.

By the time I got to check out, the parts they were able to numb had already wore off and I had a really pissed off cancer ball in my boob. I told the check out lady, “Damn. I was really hoping this was going to be more like going to the dentist. When they numb you up, you’re drooling on yourself for the rest of the day. This shit lasted all of 5 minutes after the biopsy was done.”

I was pretty pissed that they weren’t clear about having the resident do my biopsy and that they legit said the doctor was going to do that. When I was leaving I saw that poor girl in the front of the building staring out a window looking very distraught. And instead of being mad anymore I felt bad for her. Poor thing was probably traumatized. When I went to my follow up appointment, they said that was the best recovery they had ever seen. So resident if you’re reading this, we had a totally traumatic experience together, but I think we both did an awesome job at handling your first biopsy, especially without numbing, under so much stress. I handled it like a champ and just wanted to get the job done without a tear and you obviously still did a rockstar job. High five to us!!!

Telling the Family

*The Night I was Diagnosed – Telling the Family*

As I drove home, I tried to get myself back into that fight mode I was so easily able to get myself in at the doctors office. But it was harder now, because everything felt so surreal. At this point, I already had a couple doctors appointments scheduled. They were quick to move on my case since it was “so advanced” and “they had never seen it so advanced in someone my age before”. I tried to focus on the positive that at least my check list was already getting checked off, but at the same time, it made it a little scary that they were that concerned.

Again, I do not really remember everything as clearly as I would like. I went to my best friend’s house before I met the family. Bobby, the best friend, has a way of making everything – scary things, not-so-scary things, hard things, frustrating things – not so bad. I have no idea how he does it. Talking to him that night (and many, many other times throughout my journey) made me feel like this was all going to be okay, I had this, this was nothing to worry about, that he would be with me every step of the way and it would be hard and I might not be so nice or not feel so good but without a doubt, he would be there. And even though I hadn’t told anyone else yet that was close to me, he made me feel like they would all be there for me too. Like I had my own little army of support and love. We cried and laughed and I could have probably stayed there all night, but I had to leave to tell the family.

I had texted my mom and told her to bring my brother, Jake, and meet me, Mike (the boyfriend) and his boys (Ryan and Zach) at the lake house – that I had something to tell them. She kept saying something like can’t we come this weekend? Or why does it have to be now? And I remember thinking, “Just LISTEN to what I say, Woman!” …. I might have said something to that extent…

Driving out to the lake was the shortest longest drive ever. At this point, it was very very surreal. It was like I was looking down on someone else and this experience was happening to that person – not me. I was definitely on autopilot. My super safety friends will be mad at me for this, but I put on my flashers and drove way over the speed limit the whole way out to the lake. I had an angel watching over me that night, especially for that drive. I don’t know what I was thinking doing that. I think I just wanted to get there and tell my family. If you read blog 2, I was saying that telling the person next to me at the bar made me feel better cause I thought I was going to explode. Not telling my mom and family was really about to make me explode. If you have ever had chiggars, you know how you try not to scratch but eventually you cave in and tear up your legs/arms and it feels so good – it was kind of like that. And I desperately needed to scratch before I lost mind.

The boys and Mike were already at the lake when I pulled up. It was really hard not to say anything or break down crying, but we had to wait on mom and Jake to get there. It was probably only ten minutes but felt like a really long time – I really needed to scratch! We were all sitting down in the living room waiting for Mom and Jake and the boys must’ve known something was up and Mike told them we were going to have a talk but we had to wait for mom and Jake. Ryan asked, “Is this small talk? Just a lil chit chat?” Lol. Finally Mom and Jake got there and got settled in. And I began saying one of the hardest things I have ever had to say….

“You know I love you guys, right? And I will ALWAYS ALWAYS be there for you no matter what?” I proceeded to tell them about my doctor appointment and that I had been diagnosed with cancer.

Later on in my journey, I went to a retreat with other breast cancer survivors and some that were on their second-fourth diagnoses and we talked about when to tell the kids/family. Mike and I had discussed it too when we were at Chomps and I broke the news to him.

Kids are very intuitive. They know when something is wrong and they know when they are being lied to. I decided to tell everyone that night, because I knew that they would know something was up and I was being weird – what if they think that the reason I am sad is because of them? I would hate for them to think that! And if they see me sick all the time what would they think then? Imaginations can run rampant with possibilities of what is really going on when people don’t know the truth. And the way the doctors were moving so quickly with me, we were thinking I would have surgery before Christmas. So I didn’t see the point in not being honest with them now. And maybe it would show them the level of respect and trust we had. And I needed their support and love. I knew it would help me get through it and it would give me strength when quite frankly there were so many unanswered questions that I was scared.

The boys and mom asked some questions and Mike and I answered to the best of our ability without providing too much information so it wasn’t scary for them. We just said the basic facts and what we expected and didn’t give answers to anything we didn’t know answers to.

We all cried and we all calmed down as I provided as much reassurance as I could. We talked about expecting me to be sick and cranky and maybe mean sometimes, but that I wouldn’t mean to hurtful. And that was everything was going to be okay and that everything would go back to normal.

Mike’s last name is Winn and my last name is Ayers. One time we were all at the beach and we were joking around about being “WinnAyers” with a southern accent – “WINNERS”. So we ended the conversation saying “You know how I am going to beat this? Cause we are WINNAYERS!” Everyone laughed and it lightened the mood. My little brother was sitting next to me and his was the only reaction I didn’t really get to see. Mike told me he was concerned like Jake had just shut down from the conversation. So he and I went out to the dock to talk together.

My little brother was born when I was 13. It was kinda funny cause we had just moved to a new city when he was born so there were rumors he was mine. He has always felt like mine though.

I cried the day my mom told me she was pregnant. I had always begged for a sibling and just one week beforehand I told her I was happy being a single child now. My mom said I was like, “But I JUST told you I didn’t want one” when she broke the news. I told her she was lying and I called my dad to see if she was telling the truth and then I had the meltdown of the century once I heard she wasn’t lying. Eventually, I got over it and then I wanted a little girl. And I had meltdown of the century number 2 when I found it was a boy. BUT I’ll never forget the day he was born. I walked slowly up to his lil bassinet like there was going to be some alien that was going to pop out and attack me. I got just close enough to see his lil head if I stood on my tiptoes and then my life stopped. He had the cutest lil face ever. You know those mythical creatures that sing songs to sailors and once they hear it they’re drawn in and they have no control over it? His lil face was like that. Mom says that newborns can’t smile, but I still think he did and my heart melted and my life changed forever.

SO that night it was really painful to see him hurting so bad, like a piece of your heart just broke off. I don’t really remember what all I said or he said on the dock, but I know it was a lot of reassurance. Jake plays soccer and a ways back he was having a hard game. I told him, coined from my best friend, Bobby, “Jacob Michael, there ain’t no bitch in your blood! You can’t be afraid of the ball and now go out there and kick some butt.” I reminded him of that game and I said, “There ain’t no bitch in my blood. I am kicking cancer’s ass.”

Jake, Me, Zach, Ryan – the night I was diagnosed

The Afternoon I was Diagnosed

So I left the appointment where I got the news that I had cancer. I was a woman on a mission – to beat cancer – and walked through the parking lot with the gusto of Blade (y’all remember that movie?) after he won a big fight scene. The sky was a really pretty blue with white puffy clouds and my yellow Mustang looked really great next to that blue.

I got in my car and started driving and that’s when it hit again – that slow mo/rewind/fast forward thing and a million and one emotions and thoughts and questions running through my head. The big outstanding Q was who do I tell now? How? The list of people seemed never-ending – my boyfriend, my best friend, my mom, lil bro, dad, stepmom, boyfriend’s kids – oh God, how were they going to take this?, my grandparents, aunts, uncles…tell them in a mass text? No. That’s messed up – like breaking up with someone you’ve been with for years over text – “Sorry. Ain’t working. Deuces”. Then the text receiver is all alone to deal with the breakup and can’t ask “why?” or anything. – OUCH! Tell them over the phone? Nah. I am not sure how they are going to react and I want to be there when I tell them.

Before I knew it I was driving down 39^th and that pretty blue sky was mixing in with the road. It was like in the movies when you are seeing through the character’s eyes just before they pass out or have a seizure. Everything is all wonky and sideways and spinning in circles all at the same time. I look at the time and traffic, and try to figure out how long I need to hold it together before I make it to my house. Probably about 15 minutes …. if these people would drive the dang speed limit!!! But for those of you who live in Gainesville, you know NO ONE drives the dang speed limit. It’s like everyone was taught to subtract 10 or 15 from the MPH signs and that is the REAL speed limit. Apparently, I missed that part of my drivers ed class.

Anyway, I was in a hurry to get home since everything was getting blurry. But I was also scared to stop at a place because I was scared I might pass out there. Things got blurrier and more sideways and I knew I had to pull over. Luckily, my ole stomping grounds was a couple car links away, so I turned in. I got out of the car walking sideways into this restaurant/bar and they were probably thinking “this bitch doesn’t need ANY more to drink”. I made it safely to a bar stool without toppling over on the floor that, in my opinion at the time, was definitely not staying still, and after waiting a century it felt like, I had a nice cold Absolut in front of me and it went down quick. I figured if I had a couple drinks I wouldn’t have a panic attack about the world spinning around me because I could blame it on the booze. And hell I just got diagnosed with cancer – I deserved a drink … or four. All the Qs about how I was going to tell people were still running through my head and I had texts from my boyfriend and best friend about how the appointment went. Honestly, guys, I don’t remember much after that and I don’t think it was the drinks. I think I was trying to wrap my head around a lot of Qs and it was just bananas. It was like Dora the Explorer trying to wrap her arms around The Terminator – it was just not happening.

I know I texted my best friend and told him I would tell him how it went later. He kept pushing for an answer now and called me and I told him over the phone even though I didn’t want to. At some point, I must have called my primary physician and told him he was right about the “Oh my God” worthy lump he felt. He called me back while I was barstooling it and helped answer some Qs I had.

My primary physician is amazing. For years I was sick and no one could figure out why. I would get a doctor, they would run some labs, “We can’t figure this out”, send me to another dr, they’d run the same labs, tell me the same thing, repeat, repeat, repeat. This dr was the only dr that had not given up on me or pushed me off. He stuck with me and was calm and explained things to me. It meant SO much to me that he didn’t “divorce” me, if you will, and here we were finally with a diagnosis – something to work with. A lady next to me overheard our convo and told me about her story. It felt REALLY good to finally tell someone even though I just found out. It was like holding it in was going to make me explode and telling someone, ANYONE, was a release.

I had texted my boyfriend back and whatever I said made him want to meet me. I was so glad. I needed a hug. And I needed him there to help me come down from my panic attack so I could drive home. I remember us teering up at the bar as we talked but at the same time just trying to hold it together. I remember sitting on the back of the truck and smoking a cigarette or two while we talked – probably about next steps, telling family, fears, concerns.

Having him there helped me calm down. I met my boyfriend a year before my diagnosis. We started out just as friends and he was going through a hard time. So we would meet for happy hours and talk and talk and talk about what he was going through and about my struggles too. It didn’t take long to realize that he was really important to me. I worked all the time and my personal life was a mess; it frequently felt like I was in a hurricane. The stress and things to do and drama just never seemed to end. Picture a massive hurricane and I was in the middle just reaching out in that hurricane, pulling something out of it, opening my hand to see what it was, and then trying to tackle whatever was in my hand at that time the best I could. But when I was him, that whirlwind of a life stopped. I could breathe again and he made me feel calm even though I knew that hurricane was still spinning. The only times I felt like before was when I was out on the boat, or at the beach, or really anywhere near water. With him, I could be miles away from water but still feel that same sense of calm. It came in handy BIG time that day and I was finally able to drive myself home. At that point, and with some liquid courage, I made a big decision – I was going to tell my family tonight.