a week in the hospital (by Judy)

I’ve been gone from much of the internet world until yesterday because I spent a week in the hospital and, although I was hooked up to their wireless via my iPhone, they don’t allow their wireless to go to any blogs.

At any rate, the hospital. Yes. One week. One long, boring week, but a week that saved my life so I won’t complain TOO much.

What happened? Well, last Wed., March 16, Absent Minded Professor (AMP) was out getting lunch for us to eat at my workplace, as he often does. During that time, before noon, I started having chest pains. Pains that felt heavy, didn’t subside and were right in the middle of my chest. I called him just as he was coming back to my workplace and told him that instead of eating lunch together, he was going to take me to the ER of a local hospital.

I tell you what — if you have chest pains, the ER takes you in right away. They did an EKG on me and it seemed fine, so they took me to one of the ER “rooms,” a small area divided from the others via curtains. They hooked me up to a heart monitor, went through my medical history, and when my heart checked out fine, the ER Dr. who had me said that with cancer patients, they worry about blood clots in the lungs.

By that time, I was feeling fine so I kept saying that I was OK and wanted to go home. No way were they allowing that. They did a chest x-ray and then I had a CT scan for my lungs, and lo and behold, I had a clot in my lungs. I had to stay in bed until I was admitted and getting Heparin, a blood thinner. I wasn’t even allowed up to go to the bathroom. They mentioned a bed pan, but I decided that I could hold it.

At any rate, it was a busy day at the hospital and they were short of beds so I was in the ER for a total of six hours before I was admitted to a room and hooked up to Heparin via the IV they had put in my arm for the CT scan.

The hospital Dr. I had said it may take a few days. My oncologist, who visited me early the following morning said it usually took four days. The nurse that I had that day — and most of the time that I was in the hospital — said that it could take longer than four days.

It took a week for my INR level (something that measures the coagulation of the blood) to get to a point where they thought it was safe enough for me to be at home.

I was discharged in the evening of Wed., March 23, one week after I entered the hospital.

It was a tough time for me, not just because having a blood clot in your lungs is scary, but also because, once the chest pain subsided, I felt fine. I felt fine, but I wasn’t, so my main complaint there was boredom. However, I knew I was in the best place for me at the time so I tried to pass my time there as well as I could. It’s hard to complain too much about being bored when others in the hospital were in real pain. Plus, I didn’t want to be released just to have the clot move and . . . well, kill me.

I’m home now, and getting back to what’s normal for me. I saw my oncologist this morning and we talked about Coumadin, which is a blood thinner that I’ll be on for the rest of my life. My INR numbers have been good the past two days, and they’ll monitor that number at my oncologist’s office. I had my weekly chemo today. Back to normal, normal for me.

While I was in the hospital, I was eating their diabetic diet and my blood sugar numbers were still way too high so towards the end of my stay, they brought in an endocrinologist who changed the insulin that I’m on.

I realize how badly things could have gone for me. I know that if I hadn’t gone to the hospital, the clot may have moved and killed me. I could have died last week, but I didn’t, and I am so very glad.

I’m a lucky woman. No, not lucky, blessed. Incredibly blessed to have followed my instincts, to have good medical care, and to have tons of people praying for me. I have the best friends, family, and church family that anyone can have.

And I’m grateful, very grateful to be alive.
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Cross-posted to Just Enjoy Him

Good luck, Mayor!

Today’s a big day for a woman who has been a longtime supporter of Mothers With Cancer, in this group and worldwide.  Please join me in wishing “the Mayor” GOOD LUCK and ROCKIN’ WORDS in her Ph.D. thesis defense TODAY! 

The Mayor was an early supporter and designed our logo back in March of 2007 when we were just getting started, and she is the force behind Worldwide Breast Cancer, a breast cancer education site that uses lemons to illustrate possible signs and symptoms, and to encourage women to check themselves early and often for anything that seems odd.  I adore her, and I wish her ALL THE BEST today! 

Goooo, Mayor!

Cancer Sucks.

It goes without saying, but I feel like saying it anyway.

In December I lost someone important to me to lung cancer (she didn’t smoke).

Last Sunday I found out my Dad has either multiple myeloma or bone metastases (origin unknown) with a dozen lesions on his spine and pelvis.

People in my family live forever. My grandmother on my mom’s side, Rosalia Gagliano, who never really learned English and always sent birthday cards in Italian (buon compleanno, bella!), lived to be 107.

My grandfather on my father’s side, was a hard-drinkin’, goateed Democrat (the opposite of my Dad) and lived to be almost 90.

So my Dad, 74, thought he had another 10 years, or so.

“That’s just not in the cards,” he said matter-of-factly on the phone this last Sunday. My Dad’s a pretty pragmatic guy.

The only thing that worries him right now is that any of us might be upset. So, the goal is to be there for my Dad in the way he wants me to be there for him.

Like he was there for me.

One of my most prized memories: It was a sweltering July morning. I had just gotten home from the hospital after my double mastectomy and was in the bathroom cleaning my drains–one of which seemed to be held in place by barbed wire. Of all the people in my house that day, I asked my Dad to come help, because being a pragmatic guy, he could handle it.

While the Dixie Chicks played on the radio, he tenderly cleaned my drains with peroxide and tucked gauze under the barbed wire then taped it in place. Comforted, I walked around the house with my concave chest, watering the plants and opening mail.

“I cannot believe how she has bounced back from this surgery,” I would hear my Dad say. “It’s only been three days. I’ve never seen anyone recover like this.” It made me feel strong and resilient and maybe even a little powerful. I don’t know if he’ll ever know it, but it was incredibly motivating and healing.

Now it’s my turn.

My Dad is very private and very self-sufficient.  I need to strike just the right balance between being there and not being there. I have a feeling it might be a little tricky. My prayer is that I’ll instinctively know the right thing to do, just like he did.

I love you papa.

gifts (by Judy)

I received a wonderful gift in the mail yesterday — a gift basket of coffee, tea, hot cocoa mix, and chocolates. My son, Energy Boy, immediately picked up the hot cocoa mix and chocolates.

This gift came from friend Susan of Toddler Planet and Mothers With Cancer, a fellow Inflammatory Breast Cancer patient/survivor. The gift was actually Susan’s as part of an homage to her and her blogging about IBC, from Bloganthropy, but as Susan is liable to do, she thought of someone other than herself when presented with the gift. She thought of me, and her words to me in the card that was sent meant as much, if not more, than the gift:

Thank you for writing your truth online and sharing your life with those of us following behind you. You’ve made Stage IV much less lonely and mysterious.

What beautiful, encouraging words. What a beautiful person Susan is. I smiled and smiled as I sifted through the wonderful package and read her note. I SMILED, an actual, heartfelt smile.

It’s not that I don’t smile these days. I do, but I know they aren’t as frequent as they once were. As I’ve said, cancer changes a person, and I know it’s made me less playful and more serious. I still laugh, I still have good times, I’m still somewhat playful, but I lost any semblance of innocence the first time around, and have had a very hard time wrapping my mind around all of my realities this time. Realities that are and will be constants in my life.

Sooo, to be thanked for my honesty, for sometimes brutal honesty that is hard to write and probably hard to read, is a gift. A true gift. Along with the coffee and other stuff, that is one of the best gifts I could have received. Thank you, Susan.

I also received a gift from another friend when I wished her a happy birthday on Facebook. Her words of thanks included thanking me for being real:

Ahhh Judy thank you for my birthday wish. I have been so crazy lately I haven’t posted much. But, I love you…you are amazing. (and real…which is even more amazing!) Muah!

Another gift, these words. You see, there are a handful — actually less than a handful that I personally know of — who don’t like the realness of my writing, my FB updates, my life. However, I can’t be any less than who I am, whether In Real Life, online, or wherever. These words aren’t all of who I am, and anyone who would mistake them for such is naive about online communication. But I am grateful for the kind words about me being honest and real about who I am and what I’m going through.

It’s not easy to be a Stage IV Inflammatory Breast Cancer patient/survivor. This is not an easy life. I want to live a long time, and I don’t know if I’ll get that chance. As my oncologist has said, this is a terminal disease. Unless something else kills me first, IBC will. She has also said I can probably have “many years,” but I also haven’t asked her to define many years, and I don’t think I will. Because, you see, my definition of many years may be different from her definition of many years and I don’t want to box myself into any set number(s). I want to live. I want to raise Energy Boy. I want to see him graduate from high school. I want to see him enter college. I want to be at his wedding, if he should have one. I want to be there for his children, should he have any. And none of that is guaranteed. I realize it isn’t guaranteed for anyone, but it’s more of a reality for those of us with metastatic cancer that we’re less likely to be there. And that makes me sad.

However, even during all of that sadness, the not knowing what will happen, the wondering how much time I have . . . I receive gifts. Wonderful, generous gifts from wonderful, generous people.

Gifts that help me get out of bed in the morning, that help me get through the hard days, the dark times. Gifts given with love and received with love.

Thank you for the gifts.
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Cross-posted to Just Enjoy Him.

now this could be fun (by laurie)

 

I’ve written before about the one major limitation of Herceptin – that it doesn’t cross the brain-blood barrier. A couple of years ago (after meeting several young women with metastasis that had spread to the brain), I underwent a brain MRI. To my very great relief, there was no evidence of trouble but I think I’ll will be requesting another before too long.

A few days ago, my friend Deanna posted a link to Breast Cancer? But Doctor…I Hate Pink and to Ann’s take on the news that Viagra may help Herceptin to (ahem) penetrate the blood-brain barrier and thus help reduce the size of brain tumours.

As Anne tells it:

“Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can’t get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties.”

It’s seriously interesting news but go read Ann’s full post. It will make you laugh.

Cross-posted from Not Just About Cancer.