Rant

I do my absolute best keeping things positive and seeing the lighter side of my current situation. I might ask why me every now and then and usually answer myself that I’d rather it be me than my sisters, my mother, or any of my friends.

Today though, I’m pissed. I’m sick and tired of cancer.

On Monday I will leave my boys AGAIN and head back to the USA. I will fly to Winnipeg then drive home (should arrive about midnight). Tuesday I will procrastinate as long as possible until I finally get off my butt and take off to drive the 384 miles to Rochester, alone; again.

I have done every one of these trips solo. Yes I’ve had offers of people to come with me, I just choose to do it alone. It’s easier in a lot of ways to do it alone. Then I can process my emotions without a filter. I don’t have to worry about how anybody else is doing or that they feel like they have to take care of me.

The other reason is that I would hate for my reality to become real for other people. I am broke; actually beyond broke. People often realize what broke really looks like. Here is what broke really means:

  • Stopping for gas and ONLY gas. No snacks, no coffee, no drinks, no anything.
  • Checking in to my room and staying there (unless I go for a walk).
  • Not running to the corner store for a few comforts or a candy bar or bag of chips.
  • Looking longingly at that Sudoku book in the check out at the grocery store thumbing through it, and putting it back because that $4.95 is so far out of your budget that it makes you cringe.
  • You would rather drive late in the day when you have an early morning appointment so that instead of spending the night in a hotel, you drive until you need sleep and find a public rest area to grab a couple hours of sleep in the back seat.
  • Staying home when my friends invite me out because eating is where we usually gather and ordering water while everybody else orders drinks and apps brings on the pity looks.
  • Except for church, there are no social outings.
  • Not having cable TV (which means no television at all where we live)
  • Cutting the internet while the boys are gone because it’s $40 you just don’t have
  • Leaving the AC off even though it is currently 90*F in your apartment because you electricity bill is already three months behind.

Welcome to the side of cancer that is hell. It sucks. I can’t work, I can’t do anything. It hit me the other day that once the boys start school I can’t even take them for my visitation as it will be impossible for me to drive them back and forth to school and their father will not give a shit, only see it as an advantage to himself. He won’t care that the boys need the emotional connection to me as they get no emotional support from him regarding this journey.

It means that B2 will likely not play hockey this year, and I won’t be coaching, because I can’t afford it and the ex refuses to help pay for it OR provide transportation. Even while undergoing chemo last winter I had to drive 90 miles for him to attend a 45 minute practice because according the his father, hockey practice didn’t fit in to HIS schedule. It didn’t matter that all the kid talked about from October through April was hockey. It didn’t matter that there was a significant drop in behavioral issues throughout the hockey season, that the grades improved…all that mattered was that HE doesn’t want to be involved with hockey therefore, he will make it as difficult as possible for B2 to be involved.

Did I mention that at the beginning of the year, B2 could hardly stand on skates and was placed in Level one (as all first year kids are) and he along with only ONE other kid of the 28 child roster moved all the way to level THREE in one season? Ya, he done good. The kids usually spend one year at each level, B2 spent a total of two practices at level two before they shipped him to level three.

I’m ranting…and sick and tired of the bullshit that is cancer.

If it weren’t for cancer I would be back in court asking for full custody after social services has been to his house FOUR times in t last year to educate him that the boys are too young to be left home alone…FOUR TIMES.

I’ve been out of work since January. Hockey registration is in October. If I am LUCKY I can look for work starting near the end of September. There is no way I will be able to have bills caught up and enough money to pay for registration and the means to provide transportation back and forth for school and hockey…fuck cancer.

Phase Three

Phase three for me is radiation. While I do not yet know all the details, I do know that I will have treatments five days per week for a minimum of six weeks; 384 miles away from home.

I learned many years ago through struggles and heartache to live like I was dying. I don’t know when I began to live that way I just know it’s been many years. I don’t even have a bucket list. When I was flying home earlier this week I was seated next to a gentleman and we talked and he said, I bet you don’t even have a bucket list. I hadn’t really thought about it much. Yes, the thought has crossed my mind, I just never put a whole lot of thought in to it.

I told him, “Nope, I am not going to live with that kind of pressure.” My bucket list would be expensive. First of all it would be things like a trip to Disney World with the kids, a Jamaican vacation with the man of my dreams (or my kids being as there is no such man) skating with my boys and an NHL team.

To fulfill those dreams would cost a crazy amount of money. I am unemployed; I do not have a spouse or significant other who supports me. I can’t even keep my light bill paid without the generosity of the people around me. There is no way I could even begin to plan a week in Florida. So I don’t think that big.

I think about things like how am I going to pay for my next trip to Rochester to begin radiation. I will have gas ($150) plus approximately a week of hotel rooms ($300 – I stay at place that caters to patients and charges less than a normal hotel) then I will be able to move in to Hope Lodge through the American Cancer Society which is free housing during treatments.

My radiation will be Monday through Friday and although I would love to return home on weekends, I just don’t see it being financially possible. The cost of my first week will eat up all available funds I have for the entire month of August (and it won’t even be August yet).

Ya, I won’t be going back on weekends. All of my household bills through August will be paid before I head south. That will be one less thing to worry about. I just know I will have no extra money at all while I am there; it’s a mindset I have to get in to. No eating out, no entertainment, no shopping. It’s not easy, just necessary.

Don’t you hate it when you actually put things down on paper only to realize just how it can’t work out the way you planned? Kind of depressing.

Reality Isn’t Always Nice

A couple weeks ago I over an hour with the oncologist. Lots of information and I almost felt sorry for the resident he had with him today as the kid looked more lost than I did! lol

Today was a big talk about numbers and recurrence and the like. With no further treatment, my five year disease free survival rate is 50%. That means if I stopped everything right now, I have a 50% chance that over the next five years, the cancer would return. To decrease the chances of it coming back we have options. Best case scenario, with every current, relevant, available treatment brings me close to a 20% chance that over the next 5 years the cancer will return. This doesn’t mean that if it doesn’t come back in the next five years that I am considered safe or free; just a little better off.

Thankfully with breast cancer research being so aggressive, who knows what will be available in the next five years to increase my odds even more. When people ask me I honestly tell them that my prayer is to make it through Carson’s graduation. Honestly I am beyond blessed to make it through each day; the boys’ gradutaion would just be icing on the cake.

I spoke with the funeral director back home when I was there last week. He shares my same twisted sense of humor so it was nice to have a sit down chat with him. We discussed a few things (like the fact that if I am laid in a casket my feet MUST be crossed!). We talked about transporting my body across the border and he agreed it would be cheaper to cremate me here and ship me home in the mail.

Anyway, back to reality and what it means for my immediate future.

  1. I am cleared to restart the drug Herceptin which I will take for a total of 52 weeks. I have completed 12 weeks so far. This will be an injection (through my port) every three weeks until the 52 weeks are complete.
  2. I will be meeting with radiation oncology to start radiation. Likely five or six weeks of daily radiation. Right now they are booked out until July 27 for the diagnostic/referal of radiation oncology. My medical oncologist is working to get me slipped in sooner.
  3. I will begin another drug which will help to prevent recurrance. I will take this drug every day for five or ten years.
  4. I will also begin an ovary supressing drug that will be an injection every month. This is decrease the amount of estrogen available for my cancer to feed off of.

I was hoping I would hear the words ‘remission’ but of course those words did not (nor will they ever) come. I will never be in remission from this beast. I am officially in a life long battle for my life. I almost felt sorry for the doctor explaining this reality to me…he looked heartbroken. I told him it was ok, I expected that and that I just needed to hear the words.

I will forever have cancer, I will be considered cancer free when I move from this life to eternity. It’s really tough to be sad when thinking about eternity. I will be healed, I will have no more treatments, I will no longer be at war, I will  see my four babies who have passed before me, I will see my grandfathers again. A lady who recently passed due to cancer put it wonderfully. She wasn’t afraid to die, she just didn’t want to. She felt like a little girl at a party and Dad was there to pick her up and she was crying because she didn’t want to leave.

When the Lord calls me home, that’s how it will be; like my Father is picking me up from the hockey rink and I know he’s taking me to A & W which will be amazing and fun, but I’m no where near ready to get off the ice. My kids are on the ice…

So we will continue to be thankful for everyday. I will continue to shout from the rooftops how amazing God is and how great this life he has given me. I am not afraid to fight. I am not afraid to die. I am confident that His plan is best. That my children will be held through the loving embrace of those who love them.

Psalm 23A psalm of David.

1 The Lord is my shepherd;
I have all that I need.
2 He lets me rest in green meadows;
he leads me beside peaceful streams.
3     He renews my strength.
He guides me along right paths,
bringing honor to his name.
4 Even when I walk
through the darkest valley,
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.
5 You prepare a feast for me
in the presence of my enemies.
You honor me by anointing my head with oil.
My cup overflows with blessings.
6 Surely your goodness and unfailing love will pursue me
all the days of my life,
and I will live in the house of the Lord
forever.

Kinda tough to be upset when that’s my courage, my strength, my peace.

…Even though I walk through the valley of the shadow of death, you are with me…

I am genuinely am getting though this battle with such a positive outlook because I do feel Him beside me. I am in the valley of the shadow of death and I’m not afraid.

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…