The real, the ugly

Today I visited my integrative oncologist… and she sat down and just shook her head. If any of you know her, she’s amazing. Dr. Bailey Dorton…  I hadn’t seen her since last August. I have been through A LOT since then… even I don’t realize how much until someone spells it out for me…

My integrative oncologist has the purpose of trying to keep me well, both mentally… spiritually and physically. Sadly, everything has taken a toll on me and I’ve just hit a very low point. I’ve withdrawn. I don’t talk to anyone, really… very little. Not even my friends. I’ve not blogged… and I’ve not wanted to because I don’t want to listen to me… much less make other people hear it… It’s ugly, it’s depressing and like I said.. it’s not a good place. But, she told me… I need to. I need to put it down. Unfortunately, all this BS is part of cancer. There are so many aspects that I haven’t discussed… all that I’ve gone through, has changed EVERYTHING about me at a supersonic pace.

My oncologist said it best… you now have the body of a 55 year old woman – they had to starve my body of ALL hormones and medications to make sure the hormones are gone. My body shape has changed… I have holes/divots that are visible in clothes.. before it was my boob that was missing, now its my butt. I don’t even know how to dress myself, anymore. My body is not like it was…

I feel like EVERYONE wants me to forget that cancer happened and as I’ve heard it so many times… BE HAPPY TO BE ALIVE… others weren’t so lucky. Great… now you’ve just made me feel guilty. Thanks…

Cancer stares me in the face, every single day… as a matter of fact, I don’t even WANT to look in the mirror.  I have divots and oozing holes… that need to be packed and I’ve been packing wounds for 9 months now… I’m OVER IT!!!!! And, I’m not done. All of this to get me back to what? A sense of normal….  I mourn who I was… my sexuality, my HEALTH, my thoughts, my body (although I was’t a super model… it wasn’t mangled), my hair, my eyelashes, my thin arms (thanks lymphedema), my teeth (the enamel just peeled right off during chemo and it’s made them weak), my passion – my work – my business – photography… I could go on and on…

I just read an article in the doctors office. Some may say… oh you’re so vain. It’s not vanity. It’s grief. It’s mourning. Only those that have been through it can understand.

My doctor had put me on a low dose of Celexa back in August… and since August, I have steadily gained weight. If you understood how I eat… there is NO reason I should gain weight. At all… Usually when I have surgery, I lose weight… and this past time, I actually gained. I went off Celexa about a week and a half ago…. and I’m slowly losing weight. Thank goodness.. maybe my clothes will start fitting and at least I’ll feel a bit better about that. Lookee there, a positive!!!! 🙂

I’m not moping around, pissed of a the world…. well, sometimes I am. But, for the majority of the time I’m not. I feel like I’m numb…just surviving. Not necessarily living… and what’s the point in that…  I just want to be carefree…. with less worries and less stress and I want to regain some sense of who I was….

My new job…. it’s a living. It’s Monday-Friday… no weekends, it gives me some flexibility. There is something to be said about that…. (yippee another positive)… but, I want what I had… or even better… I want to live my dream of empowering women IN MY SHOES!!!!!! Women who are down and frustrated, 2 years out from cancer…. back in the grind, life is overwhelming…. and stop for one day, get them all prettied up and make them feel beautiful… point out the highlights…. every woman has some sense of beauty, whether we’ve forgotten ourselves….

But how? It seems insurmountable… Life has just gotten in the way… debts, bills, barely making it…. I had to sell every stitch of my camera gear, to survive. Cancer impacts EVERYTHING. And people want me to shoot this or that… and I have to explain. It sucks!!!! I was an award winning photographer. Can’t even afford to keep my website up. It all seems lost….

Then, there’s my sense of peace… and the constant worry about my health… I understand why they wanted me to be on Celexa… or maybe I needed something more potent…. for God sakes I can’t even drink anymore….

Stage 4 HAUNTS ME. that 50/50 or 60/40 chance…. looms…”Oh jeez, I just ate chocolate with REAL sugar, oh jeez, I have a pain in my head…. oh no…. I am having dizzy spells… is it brain cancer, has it metastasized… HELLO GOOGLE…. yea, it says it could be cancer… but, I’ll go to sleep and tomorrow is another day.. if it still there in 2 weeks, I’ll tell me doctor. Oh, the pain went away, but now there’s a new pain…. ” It’s relentless…. I want to live. I want to be here for my kids.

TIME…. time is a luxury and maybe that’s what upsets me the most. I feel like I’m wasting time…

I know I speak for EVERY one of my cancer sisters… you try to go on with a new sense of normal… believe me, there is nothing more that we could wish for….. to forget it all ever happened. But, for us… that luxury is now GONE. It can come back… and for many it does and for many it takes their life.

I’m here, I’m alive…. I should be celebrating. It’s not that simple. Life gets in the way… the struggle is REAL.

I have unpublished blogs galore… but, I think I’ll publish this one. It’s the real, the ugly…. it’s my life, right now.

For those that still read… and keep up with me. I love you. To those that I’ve not really talked to much lately, know that I still love you so much…. I hope you understand and love me through this….

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Be kind always…

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Be kind always, because you never know what someone is going through…

So, I’m once again awaiting a biopsy. Because a simple rash… could be skin mets. And, I’m supposed to act like everything is ok…I debated whether to even discuss it… because lately, I feel so incredibly alone in my fight. I feel like I don’t dare talk about it. I feel like no one wants to hear it. They want me to be positive ALL the time. All the support, I once had… and I feel lonely. How is it possible? I think because I always seem to smile and act like everything is ok, people assume I am. My children included. Maybe, that’s a mistake on my part… I am ok for the most part… and I’ll try to pretend I’m ok… until I get the phone call with either great news or devastating news. I just never know when that time will be for for me. Even if I have cancer again, I will be ok. I will continue to live my life the best way I can, I will do whatever is necessary and I will paint on a smile and live with more changes to my incredibly unrecognizable self. Until, its my time. Whenever that may be.

I’ve refused to live in fear and I’ve thrown myself into prayer. I’ve resolved that if this disease takes my life, it’s because there is a purpose in it… Maybe there is a lesson in it….

I honestly want to not think about cancer anymore. I want to go on and live a normal life and blissfully pretend that cancer cannot affect me. Lately, I’ve allowed myself to fall off the wagon with my diet… I hear people say, diet doesn’t make any difference… some people live healthy lives and die anyway. Justification…. it’s ok to have this little bit of sugar… it’s ok to have a glass of wine. I’m too tired today to walk… And, it should be ok… but, what if it’s not? What if I’ve caused this myself?

Do I publish this or do I let this be just my thoughts… nobody wants to hear it Dawn, they are tired of hearing about it…. but these thoughts swim around in my head… and unless you’ve walked in the shoes of cancer, you could never understand. No amount of “you’ve got this” will help. I know I’ve probably said those words before to someone else… but those words suck. Because, no…. I don’t “got this”… I so don’t have this. I don’t have control over any of this…. I want to believe my diet is enough, I want to believe that the radiation was enough or the chemo was enough or all the carving that’s been done to my body, has been enough…. but, what if it’s not. And my doctor said…. “your cancer comes back”…. Is my time now? Or have I dodged another bullet?

Then, there’s my body… which I’m so unhappy with right now. I won’t even go into all of the issues I have…I used to have like a couple problem areas…. well, that list is mighty long now. Thank God above for clothing. And people say… just be happy you are alive. I should be right?! But, I don’t even recognize myself… I’ve lost 10 years of estrogen… plus the chemo… and I see things in myself…. and I remind myself, you should be happy to be alive and then I see a photo of myself from just a couple or few years ago… I could cry. I can only imagine what more chemo or treatments would do… Then I think, would I even want to go through all that, again? Could I do it? I don’t know. I don’t honestly know. I don’t think my teeth could take more chemo…

Some days, I just have a hard time smiling. And, feeling like your kid places more importance on anything and everything else, certainly doesn’t help matters. I just want to shake them sometimes when they are so absorbed in their phones or so busy to spend time with family… and I want to say… someday you will regret this!!! I’m sorry this has to even be a thought in your head…. but, you would think that cancer would maybe forced them to re-calculate their priorities. But, no…. they are self absorbed, young men… and I say they, but it’s really one more than the other. But, then again… they both can be that way. I know that cancer has affected my oldest son, deeply. He is so afraid to lose me, I know this. And, because of this, love me or anyone else… I feel like he distances himself…. but then sometimes, he’ll do something so incredibly sweet and thoughtful, which makes me know… he cares. Then there’s my middle one…. I don’t think if it stared him in the face, he’d get it. The day will come… they’ll get it. But, will it be too late? Greyson has seen more, been through more with me… and gets it more than any of them! He talks all the time about breast cancer and draws me ribbons. My fight is truly for him, because obviously my older boys would be just fine without me.

This probably comes across as very negative… tomorrow, I will wake up and smile… and pretend all is fine, until I have more information. I just seem to never catch a break and there always seems to be something I have to worry about… So far, like I’ve said.. I’ve dodged those bullets. Every single time I have a worry, I think about my job, will I be able to work, I’ll lose my hair, will they notice? Will I be too tired, how will we financially make it? Will we lose everything?

And, then I stop and pray… I pray so much. I literally pray more than I have ever prayed in my life and when I pray I get this warm feeling in my stomach…. No matter what, I know I’ll be ok. I just worry about everyone else. My Mom, Greyson, my older boys… although they seem so tough… my husband is probably the strongest of them all and would be just fine, but would it be hard for him parenting a grieving child? Think positive, people say… medidate, do yoga… I do all of these things, but there is no amount of positivity that can remove the worry of this beast.

I remind myself… be kind always, people are fighting battles no one knows anything about. Everyone, seems to be facing a battle of some sort.

It’s crunch time… I’ve enjoyed my time off…

A little update…

It’s been 7 weeks that I’ve been off work, although recuperating and still not fully healed… I’ve enjoyed it entirely. I’ve baked, taken care of my sick kiddo 24/7, my older kids who were sick, I delivered food to them in bed… I’ve spoiled my husband with a clean house, cooked meals, laundry done….it’s been wonderful. But, I’m ready … more than ready to get back in the saddle. I will begin working again soon! I forgot what having time feels like! It’s amazing and I’ve taken it for granted in the past…

For those of you that didn’t know, I had to say goodbye to my friends and family at Ashley Homestore in Pineville. I took a new position with ADL Delivery out of Florida… they needed a sales executive for NC/SC and I was the woman for the job. I start November 30th and I could not be more excited for this new chapter in my life! I will train in Florida…. so I’ll leave the 30th to begin my training.

During this 7 weeks, I’ve needed every bit of it to heal… I’m still not fully healed. I still have a dime size hole in my backside that we’re packing, that leaks  continuously, that I keep bandaged… I’ll get it checked on Friday to see what the verdict is…. I imagine he may try to sew it up…. I’m not quite sure.

I have a rare issue with my left foob…. 1st my rib keeps popping out, so Dr. Gotro and his fabulous massage therapist Danielle Helms in Indian Trail have been helping me with that…. 2nd… when they removed cartilage from my rib to attach the artery, it caused a nerve to be exposed, so whenever I laid back… or my side, or my other side…. it caused pain. Sleeping was impossible. For 6 weeks, I have not slept well…. scattered sleep, first because of my pain meds and then later, just purely because of pain…. My doctor gave me some muscle relaxers and I’ve been taking ibuprofen around the clock. It seems to be the only thing that helps…. Again, Dr. Gotro used a device that kind of did a jack hammer on this radiated, tissue and it did something….. I feel a good bit better… and just in time! I was really worried about beginning work and being in so much pain. I’d say…  I’m at least 75% better. It still hurts… but it’s tolerable. I think I honestly live with a level of pain that I don’t even recognize anymore.

My healing of my actual flaps are doing great… my right breast is amazing, it feels like a boob… it shakes like a boob…. when I have my nipples done… it will look real. I wish my doctor had told me to tan my backside however, because they are remarkably lighter and it looks stupid…. lol My left foob… it’s another story, it’s tight…. it’s higher than the right…. so they’ll actually lift my right breast on the 2nd phase of this…. to match the left. I’m happy with the size, they look great in a shirt… and I guess that’s the goal. I will never look normal naked. My backside looks great, I do have some indentations where they took the flaps… straight on it looks great… to the side you can tell a bit. I no longer have a bubble butt….  I don’t recognize my body anyway, so it doesn’t matter. I’m just happy to be here and be alive…

Mr. G had RSV and I ended up with a throat infection…. both of us on antibiotics… but both of us are starting to feel better now! Just in the nick of time…

Darrell will be a single father for 2 weeks, but thankfully…. they are flying me home on the weekends!

On a real positive note, I’ve been crafty and we now have two elderly neighbors on each side…. one is widowed.. his wife died of breast cancer 😦 And, the other side… they live with their daughter and they bring us chicken salad and things…. so while I’ve had this time, I did a pinterest project, when I made cookies, I didn’t want to just deliver them on a plate…. so I did this project 🙂 Same color ribbon because it’s my favorite…. I feel so crafty. I’m so not… but even I could do this!

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2 year cancerversary tomorrow – GRAPHIC PHOTOS!!!

Last night, Cindy from Cindy’s Hope Chest stopped by with her shadow… a young girl who’s chosen to hear other women’s breast cancer stories…. and so I shared mine, I shared photos… photos that you all have not even seen… and it hit me… my anniversary of finding my cancer is tomorrow. I’ve been super emotional about it… I’ve been through a ton of crap in the past 2 years….

I’m not complaining about it….  but when I sat and told my story, I shook my own head. It’s been a lot!!!

My timeline:

April 2013… I notice bb sized lumps in my left breast… I have mammogram and diagnostic ultrasound and I was told they were cysts, come back in 1 year.

November 6, 2013… I noticed from the top view my nipple was pushed to the side… I plunked in front of the mirror… and saw this major dimpling and my nipple turned to the side…

Dimpling

November 11, 2013.. I have biopsy of left breast

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November 14, 2013… I get the dreaded call…. Are you somewhere you can sit down? You have Invasive Lobular and Invasive Ductal Carcinoma, you will need chemo and most likely radiation amd your sentinel lymph node was positive.

November 16, 2013… I have MRI to determine size of cancer …. It was 3.8cm and my sentinel lymph node had cancer. They found some suspicious spots in the right breast and needed me to have those biopsied. This was the day of my MRI

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November 18, 2013… I have biopsy of the right breast… they said it was just a cyst and it would aspirate. I watched the needle go in and come out and the doctor was perplexed…. It turned out to be atypia (pre-cancer) and would become cancer. So, we made the decision to have bilateral mastectomy (both breasts)

Stage 2 ILC and IDC, ER+ PR+ HER2-

In preparation for chemo, I cut my long hair off…. and went short…

December 11,2013  – I begin the first of 6 rounds of TAC chemo….

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Within a week of chemo, I buzzed my hair off….

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Within 2 weeks, I was able to rub the hair off with a lint roller…. so it was time to shave it bald… this was that day… Bald and Proud…

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6 grueling rounds of chemo… lots of weight lost, lots of symptoms, such as a horrible taste in my mouth… a metallic taste, like you sucked on pennies…. mouth sores, extreme tiredness….  I’d have my chemo, I’d spend 2 weeks recouperating and around the 3rd week, I’d start feeling myself and it was time to do it again… I had the support of many friends who accompanied me to chemo, who helped me clean my home, delivered meals.. donated money. It was an incredible time…. but also so difficult.

March, 26, 2014…. I finished my last chemo!

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April 17, 2014… Double Mastectomy with Expanders…

I’m upstaged to Stage 3… 8cm of residual Invasive Lobular Carcinoma was left… I had 12 nodes removed on the left… 7 had cancer and several were infiltrating, which means that the cancer escaped the lymph node and could travel elsewhere in the body… this meant, lots of radiation….

Fills and more fills….

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May, 2014 I begin radiation…. ouch… lots of burning… all the way up my neck…

I begin Tamoxifen….

May 30, 2014… 2 weeks after starting tamoxifen…. I ended up having a Pulmonary Embolism…

I have to have zoladex shots to suppress my ovarian function so I can take Aromasin and later have a hysterectomy.

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July 8, 2014…. I ring the bell…. I am DONE with 34 rounds of radiation….

I have to wait 6 months before I can have reconstruction…

Fall, 2014… I develop severe lock shoulder and lymphedema in my left arm…..

February 19, 2015… We had a leak in our kitchen and exposure to mold…

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February 23, 2015… I had my reconstruction and total hysterectomy… but ended up very sick with pneumonitis and residual asthma…

Then, because of so many antibiotics… CDiff and I was sick with that for several weeks…

Then, cellulitis in my hand…

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August 12, 2015…. I had one small area on my radiated breast that would not heal…. and it started to funnel so my left implant had to be removed….

September 6, 2015 My incision ruptured… and atrophied… we packed it twice a day for a month…. with bleach solution… I worked through all of this…

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I needed a skin graft, it would not close… so we decided to do SGAP flap surgery….

October 5, 2015… I had SGAP flap surgery which is where they take the fat/skin from my rear end and create breasts with the arteries from my rear end…. and I’m still recovering from that…. I will spare you the photos…. I am healing, it will be a process….

2 years…. of a lot of stuff to go through…. residual asthma… countless surgeries…. and lots of reminders that I have/had breast cancer.

I now take Aromasin and will for the next 5 years…. I’m in the delightful MENOPAUSE…. but, it’s not too bad. That’s why I keep my hair short, it helps stave off the hot flashes…..

I felt it was time to show some photos…. these are VERY graphic in nature….. so I apologize in advance for anyone who may have a queasy stomach….

Here’s to the next 2+ years….!!!! Keep on praying for me!!!

Update: I went to the plastic surgeon today… 11/6/2015… and I have a seroma and a pocket that collects fluid and a hole about the size of a nickel on my backside…. I have to pack it for the next week… and if it doesn’t heal… I’ll be having another surgery….

The fun never stops!!!

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Nervous… Surgery 10/5

I had my final consult yestserday with my plastic surgeon. This surgery is going to be very extensive… He will have 3 doctors performing the surgery, himself (Dr. Clavin), Dr. Robinson and Dr. LaFave…. I will be on a table that turns like a rotisserie. They will start with my backside… and they will harvest the flaps… One doctor will be working exclusively on the blood vessels… Timing is everything. He said that the flaps cannot stay off my body for more than 6 hours…

Then they will flip my body and work on the front side… and create breasts with the flaps. On the left side with radiated skin, he will remove as much of the radiated skin and the gaping wound… and replace it with my flaps… I joked with him and told him he should be able to give me DD’s, I have plenty back there to work with! And I should wake up looking like Barbie 🙂 Joking, of course… he told me I will be happy with large B’s.. this is purely about getting me back to something that is normal… For the past 3-4 weeks I’ve been eating sugar and trying to bulk up a bit for this operation… and then it will be back to my routine… vegetarian and no sugar…

The 3 doctors will work about 8-10 hours to make this come together. I will be in the hospital for 5 days at least… and possibly surgical ICU the first couple of days…

So, it’s Breast Cancer Awareness Month… and… I did my breast exam… and under my right armpit… I found a sizable lump. I didn’t know what to do… wait until Monday and tell them at the time of surgery?  Call my doctor? I decided to  message my surgical oncologist (who is out on maternity leave)… and she arranged for me to have an ultrasound… I truly have a phenomenal team of doctors…

I had the ultrasound… and the doctor says… everything looks fine, all I see is a cyst…

What????? If anyone knows about my situation… I had “cysts” 7 months before I was diagnosed… with Stage 3 cancer… “just cysts” they said…. In my right side, I had  a “cyst” that they said would aspirate… as I watched the biopsy needle go in and slide right out… the doctor who assured me it would aspirate said… hmm, that’s odd…. wel it had “atypia” which is pre-cancer…

I’ve preached…. stick a needle in it!!! Well, I will have my plastic surgeon remove it… while he’s in there… and if it doesn’t aspirate… I will make sure he sends it for biopsy. I’ve already sent the email… I will not mess around…

I’ve been completely frazzled these days… so much going on.. issues with my kids, issues with G in school, issues with work, it seemed every time I turned around.. issues…

I’ve been praying my fool head off, so I know where this is coming from! I know I’m being tested… so, I may  not have passed my tests… I probably failed on many accounts…. but, literally I’ve had too much on my plate. We’re selling our house, looking for a place to live… going in for a major surgery…. too much going on! I pray, pray, pray…. and it helps so much… I’ve had equal blessings… wonderful things have happened as well… We have an offer on our house… Blessing! We didn’t have any major issues on inspection… Blessing! The only sunny day was on the day of inspection… Blessing!

But, I’m a worry wart… I worry about worrying… and I hate worrying about my health. I truly despise it… I hate having to have every little thing checked out…. No matter what happens… there is a purpose for everything and a lesson in everything! I’ve discussed the risks of the surgery with my doctor… I’m sure I’ll come out just fine… but, it will be a LONGGG recovery.

I remind myself always…

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I won’t blog again until after surgery…

My little man is 6 years old tomorrow… I’ve been reminiscing all day about everything. It will feel so odd to be at the hospital… and not there to snuggle my lil’ man…

Please say some prayers for me… and our family!

More Surgery..

Lots has happened since I last blogged… I had my implant removed on 8/12… on 9/6 my incision ruptured. It’s been quite the journey… I basically have an 2.5X2.5 gaping wound on my chest… I’ve been packing & wrapping it twice daily since this happened. There is currently not enough skin present to close it. So, I will be required to have more surgery and my procedure will be 10/5. I’ve also had pseudomonas, which is an infection of the area… it seems to have cleared up, but we have been using a bleach solution called Dakin to clean and disinfect the area…

On, 10/5.. the surgery is going to be quite involved… 2 doctors will spend around 8 hours to harvest a flap of skin that is taken from my hip/butt region… and they will have me on a table and then flip me over to graft this skin and fat onto my chest to create breasts. At this point, I’ll be thrilled with whatever the outcome… Having just one breast has been quite challenging. I obviously cannot wear a prosthesis or a bra, since it’s raw and sore…

I will spend 5 days recovering at CMC and then I will have a total recovery time of about 6-8 weeks.

Here is an example of how the surgery will take place…

http://www.davidgreenspunmd.com/restorative_techniques/perforator_flap_reconstruction/flap_procedures/

Til next time… ❤

Lopsided Lucy Update

It was a fine Sunday morning this past Sunday, I had a much needed good night’s sleep… I was well on the road to recovery…. my incision seemed to be healing nicely…. I yawned, I stretched…. and I felt a POP. And then I felt warm liquid. I sat straight up in bed and said “it ruptured”… and Darrell panicked, “what ruptured” and then he saw the mess…. I texted my plastic surgeon (he is amazing and gave me his personal cell number), he didn’t reply so I called the office…

In the mean time, I get up… and go to the bathroom to look… and was SHOCKED by what I saw… it wasn’t just a little rip in the incision, the entire chest wall was showing, the entire incision was open… It takes a lot to get me woozy, but I nearly fainted… felt sick and had to put my head between my knees.

Then, the doctor on call… called back. He said that although it probably seemed shocking, he would recommend to put saline soaked gauze pads on the affected area and then take a dry dressing on it…. My husband said, he doesn’t know how big this is…. so my Mom came and we went to urgent care. The PA at urgent care was amazing…. they showed me how to pack it, how to clean it… and wrapped me up.

Off to work I went…

This morning I went to the plastic surgeon’s office because they were back from the holiday weekend. The doctor who saw me in lieu of my doctor… suggested to put Silva Dene cream all over it, like frosting… well it immediately was burning. I went off to work anyway… when I got to work, I started feeling off… I started to get nauseous, it burned so badly… and then I got a terrible headache…. and then I felt like I could cry. Mostly because it hurt so bad. I have a very high pain tolerance, so when I’m crying from pain, it’s not good! I got home…. and took my temp.. 101.4, this was not looking good. My temp went up to 102.5…. Tonight when I went to dress it, it was oozing…. with infection.

So tomorrow, I’ll go back to the Plastic Surgeon’s office… and we’ll see what his recommendation is. Obviously, with it open… it’s at risk of infection. But, they told me it can stay that way for as long as they think it’s necessary…

This is the nightmare that doesn’t end! My PS told me that I could write a book… I’ve had so many things go wrong and it’s honestly, so wearing. He said I can’t catch a break! 70307083e1e20a1474396688590cff73