Jul 22

Port-Free and Employed

When I last wrote to you, things were pretty fucking sucky. My kid was lucky to make it to camp, but she had to come home 3 different times for an IV. I did manage to go to Windsor to party with my friends, but even that turned into an adventure when a trail derailment cancelled my train and I had to drive the 865 kms between my house and Windsor. (of course, as soon as I hit the road, the trains started running again)

Last weekend, I went to Chicago with L. We had a grand-old time and we both bought new shoes and new clothes.

Seeing my friends did me a world of good. There is nothing I can do to change many of things that happen to me, but when I can squeeze 2 or 3 days of happiness, it makes the rest a bit easier.

Today marked a momentous day in my cancer saga: my port came out. Finally. Not that it hurt, but it was bothersome, and I had to keep getting flushed every 3 weeks. And it was a constant reminder of what I had gone though. The scars on my chest I can’t do anything about, but this, I could. So it’s gone.

Yesterday was also a momentous day: I got a job! I’ve been getting small consulting contracts here and there, and 2 weeks ago I stumbled upon a really interesting one for a big out-of-town corporation. But it won’t be many hours, although it will probably be a long term thing. This new one though, I am VERY excited about. It came through a friend who gave me a glowing recommendation. I met with the people last week before going to Chicago and we met again yesterday. I won’t go into details because it wouldn’t be fair to my new employers, but I will say this: I am very excited. I will work with great people, in a great office ( I GET TO LEAVE MY HOUSE!) and the work itself will be challenging and interesting. Most importantly: I can wear real clothes and fancy shoes! So long jeans and Birkenstocks!

Jul 03

The Olympics of Suck

Last year, when things were piling on, my friend Ellie came up with a really funny name, which I am not going to use because it’s sort of a secret-society thing. It was in the vein of The Olympics of Suck, but way funnier. In this secret society, we would vent about the shitty things that happened to us and try to out-do each other. Trust me, I was a podium-winner every time. Golds mostly.

 

Last we spoke here, my youngest daughter was diagnosed with ITP and had to get IV treatment in the children’s oncology department, because really, what is the one place I never wanted to go to in my life…. Well, the first treatment brought her right up to 137,000 and we thought, great, that worked!

Except it didn’t. She plummeted back down. So she had a second treatment. That one did barely anything. She only went up to 37,000. But the doctor was very nice and the camp was SUPER accommodating and she understood that she had to sit out the sports (except swimming) and be super duper careful not to fall or cut herself, so off she went to camp on Tuesday at 1pm.

On Wednesday at 1 pm, after a routine post-transplant blood test, my husband ended up having an emergency broncoscopy which confirmed that he not only still had aspergillus, but now he had pneumonia. By dinner time, he was in an isolation cubby in the ER. He is now on the post-transplant floor, getting IV antibiotics and he will be there at least until Sunday.

I’ll have to visit him early on Sunday. Because then I have to drive up north to the camp to go fetch my youngest child. Who’s platelets were tested again today and she has dropped back to 27,000 and needs to be treated again on Monday. Thankfully, the camp is being super nice and letting me take her out and bring her back. I can’t imagine how upset she is going to be when they tell her I’m coming and she has to get and IV again. The only thing that will probably cheer her up is that I am picking her up on my birthday. So instead of sending me a letter 5 days later in the mail, she’ll get to see me.

World Class Olympic Winner of Suck.

Jun 26

An 11 y.o. Badass

My youngest, who is 8, almost 9, went back to the hospital today to check on her platelets. We were SHOCKED that they had dropped back to 27,000. No Bueno. She needed another IV of Immunoglobulins. Camp is up in the air. We’ll have to see if they go back up.

So we spent the day in the kids oncology ward again, because that is where hematology treats kids, even the ones who don’t have cancer.

Last time she was pretty much alone, today, there were several girls waiting for chemo. They have to pee clear to get the go-ahead, something I didn’t experience.

Anyhow, there was an 11 yo in the bed across from my kid. Same age as my eldest, grade 5, going into grade 6. Except she’s been out of school since November. Bone Cancer. Which spread to her lungs.

At first, she was eyeing us with suspicion, why were we there, why did my daughter still have hair, what kind of treatment was she getting…. So I scrolled in my phone and found a picture of the day I went bald. And I showed it to her. And my port protruding from my chest. And then she got chatty.

We talked about peeing red chemo and how it hurts when your hair falls out. We compared scars and the number of radiations we got. All in all, her treatment will be 9 months. She couldn’t believe mine was 17 months. I couldn’t believe she was 11 and dealing with this. PS: she is going to be fine. Last biopsies revealed all the tumours were gone. The last 7 rounds are a precaution.

I made lots of inappropriate jokes and thought her to sing Igloo Igloo to get her to drink lots of water to get clean pee. Don’t worry, her parents were right there. Her dad thought my ‘Skittles make your platelets go up’ plan was a good one and went to get her a bag, just like my kid. I also offered to pee in a cup for her, since she was having a really hard time getting clean pee.

On the one hand, I never want to have to spend another day there, watching my kid hooked up to an IV, fighting for her platelets to stay at a normal level (which is around 150,000). On the other hand, I kind of want to hang out with her again.  I mean, I don’t have a job, maybe I could just go hang out with her anyhow.

Jun 19

Sometimes, there is cake

This week was really one of the hardest of my life, and that’s saying a lot, post dying-mother-lung-transplant-breast-cancer. Sick kid trumps everything.

Tomorrow morning we go back and find out if the platelets kept rising. please, if you pray, do so. We need for this to have worked. This kid needs to go to camp like planned.

In the mean time, I was pretty much a waste of a human being this week, so the village rallied around us. There was fish and rice from J., cookies and lemon squares from S., a full dinner and dessert from R. who lives down the street AND from R. who lives all the way in N.Y, the other J dropped off party sandwiches, which are my daughter’s favorite thing, along with the craziest water/disco iPod speakers AND wine for me. And then, today, R’s SIL, whom I have met but a couple of times, sent this over:

 

 

 

 

 

 

 

 

 

cake

 

I know. I can’t even.

People ask me all the time how I keep going. Just yesterday someone at pick up (hi!) asked me what I was ‘on’. And I was going to write this long post about getting help to get through the bad stuff. But here is the truth: it’s not the Zoloft or the Effexor, it’s not the therapists, it’s the friends. And the kindness of people who barely know us. And send us wedding-worthy cake, just because our life sucks.

Jun 16

Fear factor

UPDATE: the IV worked, she kicked up to 44,000 this morning. still need more, but she’s ok. Diagnosis by process of elimination: ITP.

 

I thought I knew what fear was.
I was pretty scared the first time my husband spend a week in the hospital and I was alone with my newly adopted second child who wanted nothing to do with me.
I was pretty scared when I was in the room when my mom took her last breath.
I was seriously fucking scared the day the beeper rang and my husband went in for a double lung transplant. And then got pneumonia and spent 13 days in the ICU.
I was really seriously fucking scared when I found out my one stage 1 tumour was in fact two stage 3A tumours.

But you know what? Take all of those, put them together, multiply them by a hundred and you still won’t get to the fear I experienced on Friday. My youngest, who is an athlete and though and the sunshine of our lives, has been bruising something fierce. Not just the bruises from her double flips at diving. Black and blue bruises that make it look like we beat her. They just show up, no explanation.

We made an appointment with her doctor last week but then we postponed it because my husband was sick (again) and we couldn’t swing both appointments. We finally took her this Monday and her doctor recommended we get a clotting test, just to see. We took the test at 8 am on Friday, expecting results in 5 to 7 days. By noon they called us and asked us to bring her to the children’s hospital to see a hematologist, stat.

Her platelets were so low, she was at risk for internal bleeding.
That, my friends, is fear.
We still don’t know exactly what is going in. Probably ITP. Hoping ITP. Because the other options I don’t want to think about.

Meanwhile today she is having a four hour IV treatment. In the oncology day unit because that is where they do such things. Getting the IV into her little bruised arm took two nurses. She screamed and cried and I felt like the worst mother in the world for having postponed the appointment last week. If only we had gone, maybe we could avoided this….

This is fear like I have never known before.

Jun 10

Raise your glass

that’s it. I am done with cancer. Well, I am done with treatment. And tonight, for the first time, I actually said out loud to a bunch of strangers at a fundraiser that I did NOT have cancer anymore. I’m not going to say it’s behind me, it never will be, but I am hopeful that right now, in this moment, there are no cancer cells in my body.

 

I’ve been sitting on this bottle for months, waiting for the right occasion. here it is. Cheers!

 

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And a special toast to the fellow cancer ass-kickers I got to meet in person tonight, Nalie, Lolitta and Maude. Cancer sucks, but sharing the experience with such inspirational ass-kickers makes it a little easier.

 

Jun 09

Tomorrow, Tomorrow

LAST HERCEPTIN.

Last IV meds flowing through my veins.

Still have 4.5 years of Tamoxifen ahead of me, Onco cannot find a good combo to get rid of the insane side effects and stopping is not an option. And I also need one last small intervention to take out my port.

But tomorrow, 18 months after this started, hundreds of hospital visits later, thousands of pills swallowed, Tomorrow is the LAST OFFICIAL TREATMENT.

Jun 06

Get a Haircut and Get a Real Job

Always good advice from Georges Thorogood.

So since I’m looking for work, I went to the hairdresser yesterday and I let her cut my hair. I’m growing it, so I really really didn’t want to cut it. But I looked like an electrified poodle. So I got it shaped. Turns out I am no longer a wash-and-wear person. I have to blow dry AND straight iron my short hair. So little hair, so much work!20140606_122357

Jun 04

The things that changed

Many of the changes that came from my experience with cancer are obvious: hair, boobs, scars, pills etc. Some of the changes are on the inside: I feel differently about people and things. One of the biggest changes has to do with my work. We closed our store at the end of April after 13 years in business. There is no direct correlation between my cancer and the closure. There were many factors, but cancer was a big part of it.

During the 7 months that I did not work at all, I had a lot of time to think. About what I wanted to do everyday. I absolutely loved my job. Loved almost every aspect of it. The things I didn’t like, I paid other people to do. It worked. But it was also 13 years of doing the same thing.

The other thing that happened is that I was pretty much alone all the time for 7 months. My kids went to school, my husband went to work and I stayed home with my low WBC trying not to catch anything.

Both of those things made me come to the realisation that I wanted to work in a team again. Yes, I’m great at self-motivation and making my own path. But I seriously missed working WITH people, the exchange of ideas, the throwing around of words on white boards (do people still do that?), the cooperating.

So I’m now trying to take my career on a different path. I had my first job interview in 16 years yesterday. It’s not the right job for me. But I got that first interview done and it went well.

It’s going to be very interesting to see where this takes me. I want different things now. Priorities have shifted. Yet another thing that happens when you get cancer.

May 25

Bid! Bid! Bid!

The auction has started! Click here to join in the fun!

Please forgive the overuse of exclamation points, I know how you all feel about those…. I’m very proud to say that we have 225 different listings this year, that’s a good 20 more than last year.

If you are visiting this blog for the first time, let me point out a few links you might be interested in:

  • To start at the beginning and learn WAY TOO MUCH about me and my boobs, click here. Yes, the entry is called Oh Fuck. I swear like a sailor, I have cancer, I’m allowed
  • If you want to see me topless, click over to the photo gallery. It’s totally not what you think. The resemblance to The Bloggess in one of the pictures is purely coincidental. We were having fun with hair extensions and rollers and next thing you know…
  • If you want to read my more embarassing post, the one where I explain how I broke my rib, it’s here.
  • Want to know what this auction is all about? Well that would be in the last post, the Auction FAQ.

No time to read? Want the Cliff’s Notes? I’m Virginia, I’ve been kicking breast cancer’s ass for 18 months. My husband had a double-lung transplant 2 years ago. I have 2 great kids. I used to own a gift store and now I’m trying to decide what to do with my life. It will be my 6th year walking The Weekend to End Women’s Cancers, for which I am the poster girl. All the money raised via the auction goes right to them, which in turns goes right to the hospital where both myself and my mom (who died of breast cancer) were treated. There, now you know.

Edited to add: I’m totally not kidding when I say I’m the poster-girl….

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