Lost

I am sorry for the lack of posting on here. I keep a CaringBridge page since being diagnosed and I update it every few days. I worry about posting on two blogs at once as this one is pretty anonymous, I’m afraid I might give too many details and somebody would figure out who I am and then the blog would get in to the wrong hands…

I am finished chemo and had a skin-sparing left mastectomy. I’m doing well as are the kiddos.

I’ve decided that cancer doesn’t have to suck…it can even be enjoyed. Truly. It is much easier than divorce or even the death of a loved one.

FEAR sucks, cancer doesn’t have to. Cancer is no worse than having depression in my eyes. BOTH can kill you if they really wanted to.

My keyboard keeps skipping all over…making it hard to think and type at the same time. I will come back later to clarify my point.

Today it Becomes Real

Today, after work and school, the boys and I are going to the hair salon. B2 is getting a haircut he so desperately needs, B1 needs one but isn’t getting one. I am getting my head shaved.

Today it becomes real and tangible and visible that Mom has cancer…and B1 is afraid. It’s one step closer to the end of the journey for me, to him it is reality slapping him in the face…HARD.

We went for some Mom and Me time last night…we both got pedicures and had an absolute blast just being silly and caring and serious, and just being US.

I am trying to make the best of a shitty situation…for all of us. I am also trying to make it less scary for them. I also have to make sure I respect each of their fears, their thought processes, their ages, their concerns…it’s not easy.

B2 is super excited about helping to shave my head. B1 is hating that it even has to be done…I have to be the mom to both kids…and sometimes in the exact same minute…enjoying it with one, and mourning with the other.

So…today it becomes real.

The Tale of Two Blogs

I keep a CaringBridge page to keep my friends and family updated on my cancer journey and also as a legacy for my kids. What CaringBridge cannot do is it cannot give me a place to vent my frustrations like I am about to do here. Very few people know of this blog. The friends who do are close enough that they will understand the rant…

I developed a rash on Saturday. It covers my neck, face, scalp (which is still covered with hair btw), and shoulders. I cannot go to work with this rash. I FEEL fine…I have no physical side effects like nausea or anything.

On CaringBridge I can post about the treatments, the rash, the ups and downs. Educate everybody on the how and why of treatments and decisions to be made.

I can’t post about how lonely I am. My family is 600 miles away. If I was ‘at home’ right now it would be ok for me to be out in public, going for breakfast with my parents (they go out for breakfast every day at 9:00am). Nobody would even bat an eyelash at this rash…more than likely they would make fun of me…and we’d all enjoy it.

Here, not so much.

I was called by the newspaper to share my story about what Santa brought me for Christmas…I don’t want to go out…but I feel strongly to share the greatness of the local people and how wonderful they have been to the kids and I since the diagnosis.

First ER Visit Due To Chemo

After hockey practice this morning (around 12:30) I developed a rash on the left side of my neck. I went to the ER as it is a common indicator of an allergic reaction. By the time I was admitted (12:55pm) it covered my entire face, my shoulders and upper body. Although the ER doc insists it is not related to my chemo…I know it is. He said allergic reactions would show during administration of medication, not the next day. I explained that chemo reactions are often delayed due to the pre-meds that are given at the time of infusion. He said this is still highly unlikely…I didn’t care what he thought, I just wanted what I knew I needed…IV Benadryl and IV steroids. He ordered both along with Pepcid (even tough I told him I use Zantac as part of my chemo regimen) and checked on me an hour later. There was no improvement, but it was no worse so he ordered a second round of Benadryl. An hour later there was still no improvement yet no progression so he ordered on more dose of steroids and sent me home. Told me to go buy some Benadryl and continue to take it every 2 hours until the rash disappeared.

He is sure that I was exposed to something that morning…I tried to explain that I was NOT exposed to anything unusual, I have no other known allergies, and that chemo reactions can happen up to three weeks after infusion of certain medications.

I realized today that I am so lucky. The nurses at the infusion center are always so impressed that I even know the name of each of my drugs, never mind I know the specific duty of each of them. They apparently have long term patients who have no idea what medications they are taking or what the medicine is aimed to do.

People, I URGE YOU STRONGLY…nobody has a bigger dog in the fight for your life than YOU do. Be your own advocate, know your stuff, learn everything possible about your treatments and embrace your journey. Do not walk this path blindly and then whine when nothing seems to be working.

Start with your diagnosis: what is your specific diagnosis:

  1. I have locally advanced, stage III Invasive Ductal Carcinoma with extensive Ductal Carcinoma Insitu.
  2. My receptor status is ER+ PR+ HER2+
    1. ER+ means my cancer is Estrogen Receptor Positive and it is fed by the estrogen in my body.
    2. PR+ means my cancer is Progesterone Receptor Positive and is fed by the progesterone in my body.
    3. HER2+ means the cells have too many receptors for the gene that makes the human epidermal growth factor receptor 2…essentially this is the on/off switch to tell the cells when and how fast to multiply and when to stop. With too many of these, my tumor (in layman’s terms) does not have an off switch. This why the cancer is considered aggressive.

Know your treatment plan and the reason for each step:

  1. 20 weeks of chemo:
    1. To shrink the tumor
    2. To kill any possible micro-metastases throughout my body
  2. Mastectomy:
    1. To remove the diseased breast.

Lots of big words sure, lots of info, no doubt. How do I sleep at night with all this info in my head? LIKE A BABY. I KNOW that I am doing everything I can to EFFECTIVELY treat my specific cancer.

I belong to a few discussion groups online about breast cancer and am appalled and have had to leave a few of them because there are so many women who are so lost in their own journey. I feel sympathy for those who won’t get a port placed as it will be yet another scar they will carry. A two inch scar below your collar bone or the possibility of not having accessible veins in your aging years due to scarring from repeated IV pokes. I’ll take the scar, thank you very much. (My port gets placed Friday, January 9). The women who are so vain that the thought of losing their hair is traumatic…get over it ladies…your hair or your life? Easy call for me. (I was told day 12-15 it would start to fall out…I’m on day 9 and getting more excited every day!)

It is no wonder so many people are so very scared of cancer, they hear the word and they freeze. Their brains stop. I understand that, I truly do. There comes a time when you have to say, “Yep, I’m TERRIFIED and I think I might die, time to get to work.” Hopefully there is somebody in your support network who can do this for you if you can’t, unfortunately due to the fear associated with cancer they are just as scared (if not more so than you are) and are even less educated. Many of them have no idea how to approach you, talk to you, or even say hi, let alone tell you to get your head out of your ass and get busy living or get busy dying. If you are getting busy dying; I’ll help you embrace that too. Don’t expect me to sugar coat the reality or your choices. I have compassion, I know there is a quality versus quantity balance. Your choices are yours…and I respect them and will embrace them with you if they are rational, well planned, educated choices.

If even ONE person takes control of their health due to this journal and my journey, the final outcome is a win in my book…whether I live or die. (Only the good die young…I got more than a few years left!)

Off to buy more Benadryl…

Today I Knew

I don’t know why, but today I knew cancer was going to win. I don’t know when, or how. I just had a feeling come over me that told me cancer was going to eventually win this battle.

It wasn’t even an option for me, I know I am going to carry on as I have been; upbeat, positive, all hands on deck, and ass-kicking. If cancer does beat me, it is God’s will.

When I was pregnant with B2 and they told me at 12 weeks 2 days gestation that my baby would not live until the end of the week and I would need an abortion to remove the remains I decided that every minute that child was alive would be filled with love and prayer and hope. Not one day did I focus on the end. Every day I focused on that moment, with my baby…the one who knew my heartbeat from the inside. I wanted positive energy to fill his entire world. I never wanted him to feel his Mother’s heart break. It was a choice. I can’t say it was an easy or a hard choice, it was just a decision I made and stuck to. (He was seven in November and now plays hockey)

I am doing the same with cancer. I don’t know what the outcome will be, miracles happen every day. I am not posting this on my caringbridge site as my kids have access to that and I never want them to even think I gave up, because I am not. Nothing has changed, nothing will change.

We will still joke and play, and go to chemo, and eventually have surgery and then more chemo…and we will do so with a smile. We will do so with an iron will.

We will do so knowing that even if we do lose the battle, we won the war. We will have won, knowing that we honored God, we continued to serve others and allowed others to serve us. We will have won by showing so many people how to simply Love God. Love People. Period. and how the pay it forwards can continue for as far as the mind can reach.

We showed the entire world that cancer isn’t all that bad when you have faith, and an army of support. We are blessed.

In 2014, I was blessed with very aggressive stage 3 cancer. In 2015 I am going to fight it with the best doctors, the greatest family and friends, and a positive attitude. I am going to win, whether I live or I die…because cancer will NEVER beat me down. It can never take away the love, the lessons, the friendships, the faith that I have that God works all things for His go.

Getting Real

I was offered a surgery date for Monday, Nov 10. They called and I immediately panicked. I’m not ready for surgery, I’m not ready for this is be so invasive, I’m not ready for cancer.

I turned down the surgery date just because I want to get a second opinion at the Mayo. I am only 40 and want to make sure I do all of this right. I might just be uneasy because it’s cancer, and everything is moving so fast; I want to make sure I do everything in my power to get the best available treatment.

I’m mostly staying positive, the emotional exhaustion in the worst. How do I ask for help when really I have it pretty good already? I’m not working so I should have tons of time to deal with cancer, right? Sure…but time doesn’t pay the damn rent or put gas in the vehicle. It just gives me one more thing to worry about as I move forward and wonder how long I can drag this out for.

My friends are great…I couldn’t do this without them.

CaringBridge

Started a CaringBridge page to journal just my cancer journey. If you visit, please sign the guest book.

I am already so tired of cancer. I drove over 1000 miles last week for appointments and will drive AT LEAST that many more to get a second opinion at the Mayo Clinic in Rochester, MN. I am only 40, my future deserves a second look. My kids deserve me to have the best care available.

The current health system I have been doctoring has left me with a few uneasy feelings so the travel is worth the peace of mind.

I am scared…I cannot screw this up. I NEED this done right the first time so I don’t have to watch my family and friends go through this again. Yes, that is harder for me than dealing with the issue on its’ own; watching my family and friends hurting for me.

My cancer has a name: Dorothy. When I had my thyroid nodules, The Photographer named it Percy (for perspective). While on my way to my first appointment in Fargo I texted her and said, “This thing needs a name.” Within a few hours she responded with Dorothy…I frequently refer to my life as the storm I am living in…storm…tornado…Dorothy. I loved it. Then she texted me again to share with me that the meaning of the name is God’s gift. Who am I to turn down a gift from God?

I have been including Dorothy in hashtags on my Facebook status updates that range from #dorothymustdie to #dorothybegone to a simple #cancersucks. I am blessed with an awesome circle of family and friends. We are enjoying the humorous aspect of this whole ordeal.

I was standing in the elevator with my mom and niece and I kept hitting the #3 button (we were on the third floor and trying to get to the lobby). She asked if there was a reason I was hitting the wrong button and I guffawed saying well I DO have cancer…both of them rolled their eyes and said my excuse was already getting pretty old. She reminded me that it was in my boob, NOT my brain. I told her when I am dead they will be so sad when they remember making fun of me in the elevator. Neither one of them seemed to think they would…all compassion I tell ya! LOL

I can already picture my funeral (don’t worry, I don’t think this is even going to come close to killing me)…people are going to be interrupting the pastor, giggling, talking, listening to music, updating their Facebook, and taking selfies with my body.