Where is the board for "Wimp not Warrior?"

Hi- My name is Jennie and I'm a wimp.

People say to me, "Oh, Jennie! You'll beat this triple negative, too! Look what you've fought your way thru!" I'm so sorry, but I didn't fight my way thru anything. Things came at me and I dealt with what I had to. You know? I mean, did I have a choice? You do what you do because you have to!

Now, I may have been strong and did what I have to, but now I have a choice about something. I can have chemo, or not.

People who choose chemo, in my opinion are WARRIORS. You women are amazing! I can't believe what you go thru! I bow down at your feet, and I am in awe. Total awe!

I have chosen (I think?) not to. I'm a wimp.

Let me share a little bit about me. Just a bit, not a bunch! I have marfan syndrome and I have had medical problems all my life. I also have a son with marfan. (One with, one without). You can check it out at marfan.org, if you like.

My son was born blind, but we got that handled. He's also had open heart surgery to prevent what happened to me, happening to him.

I had an aortic dissection 6 years ago. That's what John Ritter had. Remember? He didn't make it, but after 13 hours in surgery, splitting my aorta from carotid to illiac, losing me twice, having a heart attack where the aorta dissected, well, they patched me together like humpty dumpty and I made it! I was alive, but crippled, I couldn't walk, because they forgot to check my blood pressure in my feet. I had no blood flow down there... So, they life flighted me to Stanford, where they were brave enough (My hospital refused to try) and put stents in my illiacs.  I walked the next day and have since!! After five years, I finallly felt like myself again. Or, almost... but good enough to enjoy life again! Yay! I have neurologic damage and chronic pain. I have fibromyalgia, they say. Not sure about that, but they say so. I have eye problems after about 15 eye surgeries.Anyhow, marfan syndrome is a challenge, but I've lived a grand life. I feel lucky, somehow, thru it all. I'm so glad my son's aorta was wrapped in dacron so he won't dissect like I did! 

I was told by my cardio, after my dissection that I didn't have long to live. That, if I wanted to travel, I should "do it now." Well, I don't have a lot of money, but I saved up and finally... finally, my boys and I are going to Maui, October 26th! I made the plans one month before I found the lump.

I have two wonderful young 20 year old boys. Life is good. Finally, I told my doc, I wanted to try to go back to work... right after my vacation of a lifetime!

Then, I found "the lump". It's triple negative. Let's see if I know how to do this, now.

It's 2.2 Grade three? Stage three? It's aggressive? Can someone help me do my profile how it is supposed to be? It is ER- PR- HER2- and I'm not sure about the BRCA. I will be tested.

Here's a question. Do they automatically test for that? The BRCA? Or, do I have to ask?

OK, so I went to the doc...this is going to be long... I'm sorry!

 and my surgeon did a lumpectomy and the margins were clear. The sentinal node biopsy showed that my nodes were clean. 0/2 (See? I'm learning!)

I have been in twice since then to have fluid drained from under my arm. It hurts SO bad! I had over 60CC's taken out both times. My surgery was October 1st. They have me tightly wrapped in ace bandages, now, to try to keep it from swelling, again. It presses against my St. Judes valve and my whole body shakes! Scary!

OK...so I went to the after appointment, and met with the onco. Here is the letter I wrote to my sisters and brothers regarding how I felt about the outcome, and the letter my sister wrote to clear up anything I goofed on. She's my loyal note taker and I love her!

First, my note:

Hi you guys-

I'm sending this to my family and a few of my friends, who are waiting to hear what's up.

I'm pretty depressed, tonight.

I went to my follow up appointment today.

OK... so surgery went great. I'm healing well, but when I got there it was quite swollen in my armpit and she said "Oh, my!" grabbed a horse needle, jabbed it in me "pit" and drew off a couple gallons of fluid (OK, I'm exaggerating, but it seemed like it!) Ouch! It felt better for a while, but now is swollen again. She said it is from overdoing it.

Then, we waited for an hour to see the oncologist. (After waiting an hour for the surgeon.)

Thank God for my sister, Teri. (And all of you, but she waited for me, patiently!)

Anyhow... sigh... even though there is no sign of cancer in my lymph nodes that they checked, there is of course, still a possibility that a seed has gone from the tumor, down the blood stream and is waiting to sprout. Anything smaller than 1/8th inch, they can't see.

They explained it like dandelions in your lawn, and how your first action would be to dig the existing ones up.... but, that you would want to use weed killer, because even if you got it all, or thought you did, it's better to use 'chemo' or weed killer to make sure it doesn't come back next year.

They say radiation doesn't totally do the job, and chemo doesn't totally do the job, but together, they help.

However, the only chemo that works for my cancer (triple negative) is extremely aggressive stuff that is dangerous, even to healthy people. Because of my already fragile state, it is a real risk for me and I have to decide what to do.

It would be a 16 week course, a 3.5 hour drip done at the hospital, in case of emergencies, every two weeks. I would of course go thru all the yuck; pretty badly. The nausea, the hair loss, the pain. That's no big. I can do that.

I would also, however, risk having heart damage from, for example, the drug doxorubicin, that can damage the heart muscle over time. The chance of heart damage goes up as the total dose of the drug goes up.

Since this is triple negative cancer and it only responds to very aggressive therapy, I have to have a very high dosage of this and other drugs like taxol. I'd have a three drug cocktail. I think the other one is Adriamycin.

Also, I will have to give myself shots in my stomach, as this chemo can cause clotting, which could easily get caught in my St. Judes valve and cause a stroke. I'd have to quit my coumadin, which helps it not to clot.

These are all things I have to take into consideration and decide myself. It's a very, very tough decision for me and the oncologist realizes it.

Sure enough, I got home and within 10 seconds of hearing what I had to report, Bill, (who doesn't like my Maui vacation plans) says, "I know what I'd do! I'd cancel Maui and get started on chemo right away!"

It just tore me up to hear this so soon. I just went upstairs and cried. I long for support at this very difficult time. Not for someone to tell me what to do when he doesn't even understand the risks, or any of it!

Trying to figure it out, I think... If I'm going to die in a year from my heart stuff, (probably won't at this time, but who knows, considering what they told me earlier? That hasn't changed! I've just outlived their expectations!) But, who knows? And... if I were to die of complications from chemo, would I be sad that I didn't live to catch another salmon? Ever? Because I was so sick?

And... if I don't do chemo, will I be upset if I didn't try chemo, not knowing if it would have saved me? What if I only got 6 months, and it came back?

I'll be anxious to hear what Dr. Song has to say. (My thoracic surgeon about my life expectancy, now, and what, perhaps Liang and Sunny at Stanford would say. Dr. Menashe called today and I'm calling him tomorrow for his opinion. He's my long time cardiologist and fly fishing friend. He'll tell me the truth, no matter good or bad.

You guys. I'm just in tears. I have no idea what to do.

I can't work tonight, though. That's for sure. I hope tomorrow is better.

Teri, can you please tell us the drugs they said they'd put me on for sure, and anything I missed? I'm forgetful and you took notes! Just reply to all, so that my friends get it, too. Tammy, Kim and Glen and Ginny.

Lord, give me the strength to figure this out. Sorry I feel like a wimp tonight, but I just am!

Jen

---------------

and then, my sister... with the real facts and the correct meds!

 Just to add to what Jennie said:

The dandelion analogy helped me, too. The Dr. was so patient and careful to explain everything to our understanding. He said that if Jennie's "dandelion" had white fluff on it when they "dug it up" (which, as Jennie said, they can't tell at this point), then they need to apply weed killer to get the seeds that are in the "lawn".

Anyway, he told us that if Jennie does nothing further, she has a 50% chance of the cancer coming back. With chemotherapy and possible radiation the odds are reduced to 25%. However, there are risks with the chemotherapy--more so for Jennie. Those are:

1) Increased risk of clotting
2) Congestive heart failure
3) Pneumonia

These are also risks for the otherwise healthy patient--about 2%, but for Jennie the odds increase to 5 or 6%.

The chemotherapy drugs he wants to use are:

1) Adriamycin
2) Cyclophosphamide
3) Taxol

These would be administered in 8 treatments spaced two weeks apart through a "porta-cath" (?). He said he'd prefer she come to OHSU for them so that she'd be close to good support in case of emergency. Before starting these, he recommended an initial treatment, set to begin on Oct. 26, consisting of a week of relaxation, sun, good food, and prayer on a warm beach with staff to attend to her every need.

The Dr. listed the usual side-effects of the chemo treatments--hair loss (which he reminded her grows back), nausea (for which they apparently have very good drugs now), fatigue, and immune suppression. He said she should be back to her old self within a year.

So . . . that's the facts as I've recorded them. We did start out the appointment with the news that the surgery path report was "perfect": Margins negative, nodes negative--and, of course, the PET scan was negative. Praise the Lord for that news! Its been a long day (especially with your long drive). I'm not surprised you're wimpy tonight,Jennie. This doesn't sound like fun, but I know you're in God's loving hands now and always. He can see you through this. He can heal you. Let's all pray for that.

Love,
Teri

I have been reading this forum since I signed on the day I found the lump and posted in "not diagnosed". I haven't posted since then. I finally decided this will be my home here with the triple negative group. That is, if you'll have a wimp!?

I don't know how you guys do it. I'm just in tears. I can't imagine going back to being sick, again. I watched, for five years, my family take my dogs out to the river, while I was in bed. I had to be carted out there, if I ever wanted to go. Finally, I worked hard to make it so that I could walk, and to play with my dogs, and to be a part of my active family and fish, again. 

I already have neurologia in my legs. Totally numb on one, and half of the other. And, now they are going to poison me?!? 

I can't believe my onco would have me have that much medicine for so long! Is that typical?

Today I went again to be drained and my surgeon actually said she was even surprised that he reccomended that for me. That she thought I was much too fragile to take that! She said that I should get a second and third opinion. I'm on disability and medicare. Will they pay for a second opinion? 

I have so much to say, and at the same time, I just feel like I can't do this. You all sound so up, and I am just feeling so depressed! 

Well, dinner is ready and this is way too long, already. I want you to know how much you have helped me, already. Even if it doesn't sound like it! You have. Thank you for that!

Your new friend, (I hope!)

Jennie