I’m Still Here

I had stopped writing because my laptop decided to die. I am not sure why I never came back to writing here, but lately this blog has been calling for me to come back and write.

So, we made it through cancer in pretty much one piece. Just some of those pieces are stitched together and scarred. I am working part time at the local middle school, I just started my second year.

The boys FINALLY got to switch schools this year (praise God). So now that I don’t have to travel 450 miles on the weeks they are with me, I can look for something with more hours. I am still hoping for it to be within the school system, but keeping my eyes open elsewhere.

Wow…my boys are now 12 and 9. Can you even believe it?

Cancer was hard. Lately, beyond cancer has even been difficult. We are still financially struggling just to get back on our feet and there are days when I know we shouldn’t have gotten this far…but we have.

I try not to look back very often because forward is where it’s at.

We finally moved into a larger place; a three bedroom townhouse. We cannot afford it with the job I have right now, but we are making it. Kinda living the same as we did in the old place…barely scraping by…but it is so worth it.

I keep reminding myself that this is only a season…and seasons change all the time.

I am a grandmother. She is a year and a half old.

I am not even sure how to get back to blogging…but I’m here.

Welcome back to my life.

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Shopping

This week I plan to pick up most of the gifts needed for Christmas…B1 is getting a box series of Harry Potter, some Lego’s, and a few other small things. B2 will be getting new hockey socks (to match his travel, in house and practice jerseys), Nerf ammo, and I dunno what else. The girl will get a month of her cell phone paid.

My church paid my rent for December to make sure that I had funds to buy gifts for them. They cannot even begin to know how that gesture helps the over all picture of getting back on our feet.

I will have two paychecks in December totaling about $500…that will help us start to get out feet back under us.

I have a trip back to Mayo at the end of the month (before Christmas) for follow ups.

Life is starting to look somewhat normal again. I’d like to be working more but know that I physically just can’t do it. It’s  difficult not being able to go full speed yet.

I’m hoping that by summer I can have most of my strength back. Then I will have to undergo the reconstruction phase and that will keep me down for the most of the summer. My prayer is to be ice-ready for the end of October.

Being a coach means I get some fees waived (registration with USA Hockey and coaching clinic fees) plus I get a free coat and a waiver for concession hours. One of our major fundraisers is working concessions for the high school hockey games. We receive 13% of each till’s receipts. Each player must cover 12 hours of concessions up to a family cap of 24 hours.

As somebody donated B2’s hockey registration fees this year, I have opted to work a few shifts to help out.

Just a rambling post…but it’s a post.

 

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.

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…

This Could Get Interesting

The ex signed the boys up for Summer Rec baseball in the town where he lives. I am glad to see them involved and enjoying it.

Today after their game, B1 called to tell me they lost and said that B2 played right center field (whatever that means) and that when a kid hit the ball to him he forgot to throw it in and instead ran to the home plate from the outfield…and BEAT the kid!! He told me “…his tiny legs were going so fast Mom…”  Apparently the batter was B1’s age or older (9) and B2 is only 6! LOL

But I digress…as usual

Summer Rec takes place beginning at 9 am and for away games the bus sometimes leaves as early as 7:45. I am now working in the town where I live. I made it clear to the ex that I would not be able to get them to ball when they are with me due to my schedule and was willing to exchange parenting time so that the boys stayed exclusively with him through the ball season and I would exercise parenting time every other weekend. When ball finishes up, I would take the boys exclusively to make up for the time I missed with him exercising every other weekend through that time.

Although the divorce decree clearly states it is the responsibility of the parent with parenting time to provide transportation to and from the children’s activities, it also states that the parties are to work together in the best interests of the children.

I was told what my duties as a parent were when we exchanged the kids yesterday (to get them to baseball during my time) and a few other things…apparently I don’t know how to read or understand the divorce decree “…as it says right in there…” And right in front of the boys…good one dad…good job motherfucker.

This morning I sent the following email to the parenting time expeditor and the ex:

This email is regarding the boys playing summer rec baseball in Dad’s town.
 
I understand that it is reasonable for the boys to be involved every week with their friends and team in this sport. Up until this last week there had been no issue with the boys missing the week they are with me due to my work schedule. They understand that there are things that are not the same when mom and dad are divorced and living in different towns.
 
I also believe it is in the boys best interest that I remain employed to support them. My current work schedule prevents me from taking a minimum two and a half hours off three or four days per week.
 
I am still offering to switch parenting time so the boys spend the weekdays in Dad’s town so they don’t have to miss any baseball games or practices (I offered this when they were first signed up). I will continue every other weekend parenting time through those weeks and will then make up my weeks missed after the season is over; allowing parenting time with Dad every other weekend during that time.
 
I do not think it reasonable to be told what my duties as a parent are while exchanging the children in Exchange Location as happened during the exchange Sunday, July 6, 2014 in front of the children. While I understand the court decree states it is the parent who has parenting time’s responsibility to transport the children to their activities, it is sometimes necessary to make changes for the best interests of the children as it is the CHILDREN’S time, not the parent’s which is the priority.
 
Mom
 
I have no idea what will come of this…I just don’t need the threat of being taken to court over Summer Rec baseball or whatever the next petty thing he comes up with…
 
With our parenting time expeditor, we are to try and make these decisions on our own, amongst ourselves but include him in the emails we exchange so he can have all necessary info if and when he needs to make a decision.
 
Will I miss the heck out of the kids when they are with Dad and I only get every other weekend??? You know I will…I will also make sure our weekends are full of mini golf, fishing, bike rides, adventures, and cool stuff to enjoy every minute of what time we have.
 

Finding Center

People are often looking for balance in their lives. Right now I need to find my center. You can’t balance anything if you don’t know where the center is.

For this I’m extremely fortunate that my unemployment claim was granted. I have 26 weeks (19 remaining) to really make a difference and to set mfr in the direction of a life that is happy and fulfilling.

Yes, money is tight for now; and worth every cut back we’ve had to make. I still have no internet or cable, I quit the bowling league, I do laundry at my friend’s house to save money, and rarely go out.

On the plus side, I have enough to pay the rent, utilities, vehicle expenses, and the boys operating budget. We get SNAP benefits to cover food.

I have been asked to join a “Next Gen Think Tank” for our church. It is a committee focused on the youth, children, and families of our congregation. This is going to be a ton of work to get things going in the right direction.

As of February I am back on the teaching schedule for Creation Station and looking forward to being involved in the direction our children’s ministry moves forward.

I am exiting about getting these children involved in their faith. I’d like to add a children’s choir for special occasions to involve the kids a little more.

So as I find center, I need to decide on a few goals. Career, financial, spiritual, family…

I need to make them as specific as possible with a goal date. Where do I want to be in six months, one year, five years, ten years. I know the five and ten year goals are extremely fluid, but if I  at least have a vision I can begin to take steps in that direction.

Enjoy the next steps of my journey. I’m excited to share it with you.

Always Something

The boys and I were joking the other day and I told them I want too start looking for a boyfriend. Immediately they both let me know that I could not date.

I said I wanted somebody to go to the movies with and go out for dinner together. B2 climbed up on my lap and said, “Mom, I’ll go too the movies with you.”

When I said that I wanted to go with a boyfriend he said when he’s older he will date me. How sweet.

It’s definitely going to take a unique man to join our lives. I hope he has the patience of a saint and some pretty thick skin, I don’t see these two just welcoming the first guy too come along with open arms.