Not the day I thought it would be....

I know that cancer isn't easy...it's not supposed to be. It's ugly and mean and unfair.  But I just wish it were a little more definite!

Throughout this whole ordeal, nothing about my cancer has been definite!  First we thought we were just removing simple calcification, and then it turned into an invasive cancer.  Then we removed lymph nodes, but they disappeared!  Now we've done a genetic test and it comes back iffy!

This test (OncoType) takes the cancer and slices it down into microscopically thin slices.  Then these slices are tested for their genetic make-up. The result is a prediction of the chance of recurrence within the next 10 years. High risk: treatment with chemo, then radiation and then oral medication.  Low risk: Radiation and oral medication.  Medium risk: you get to toss the dice and make your own decision.  Of course you can guess which category I fall into!  I have a 19% chance that my cancer will recur within the next 10 years.  Being the glass half full type of person, I see that and an 81% chance that it WON'T recur.  If I have chemo, the chance of recurrence could be cut in half, which is pretty encouraging. (Later addition:  the 50% prediction came from my doctor.  According to the book they gave me when I was first diagnose, it would be reduced by 1/3).  However, I have always been a firm believer that chemo is so toxic (some of it is made from mustard gas!) and destroys so much more than just cancer cells, that I wouldn't want it unless it is a life-saving event! My oncologist (whom I really love and respect) said that the chemo would have only 2 components:  Taxotere and Cytoxan.  The 3rd component, which she referred to as the "red devil" is only given to those with higher stage breast cancer.  From that, I thought that this might not be so bad.  I could spend 4 days out of the next 12 weeks having chemo if it weren't that invasive and if it boosted my chance of non-recurring to 90%.  So I came home and researched this treatment, commonly referred to as TC.  Here are some of the things I learned:

Side effects of Cytoxan

• low white blood cell count
• hair loss
• nausea
• vomiting
• loss of appetite
• sores in mouth or on lips
• diarrhea

Side effects of Taxotere

• low white blood cell count
• susceptibility to infection
• fluid retention
• allergic reactions
• hair loss
• numbness in the fingers and toes (neuropathy)
• nausea
• vomiting
• constipation
• taste changes
• fatigue
• muscle pain
• bone or joint pain
• nail changes
• mouth or throat sores
• watery eyes

One article also talked about short term memory loss which could last for several years! 

I was devastated when I read these articles!  All the things that I don't want to happen and that I believe are so toxic that I question the necessity for me! 

Now I have to wrestle with this decision.  And the questions I have to answer are difficult ones.  Am I being unnecessarily frightened by these side-effects.  I know that thousands of people have gone through them and survived.  But do I want to lose 3 months or more of my life when things are just starting to look a little sunnier (Lucas is turning 3; Gary's in remission). Am I being selfish? Am I being fair to my family?  Am I strong enough to take other measures to lower my future risk factors (mainly tackling the nutrition issues)? And if I do, will they work? And I don't know anyone else who has been through this to talk to.  I know there are support groups out there, but I'm not a support group type of gal.  Too damned independent.

So...I don't know what I'm going to do.  First I have to stop crying so I can think rationally...then I have to just decide.  I'm giving myself a week at the most...we'll see...


PostScript:  I composed this yesterday to get everything out of my head and in front of me.  I didn't want to post it till I'd had a chance to discuss it with Karen.  After discussions with both her & Gary, I've decided not to do the chemo.  I don't see the point.  I'm not sick now.  My invasive tumor is gone and the rest of it is "in situ".  I feel fine.  Why should I feel worse to chemically attack something that I don't even know is there.  Sort of like bombing an uninhabited island because there might be people there some day!


Thanks, as usual for listening.

Past due...just like a library book!

Well, I should have written some of this a while ago.  But you know what a procrastinator I am! So...on the cancer front...

April 5th, I had a 2nd surgery, this time to look at the sentinel lymph node & to get more tissue to clear up the margins of one of the tumors.  It wasn't a bad surgery...I had a little deeper anesthetic, but once again, they listened to my concerns, calmed me, & gave me lots of anti-nausea medicine.  I had the same nurse & anesthetist that I had in January, so that was a comfort in itself. I came home groggy and cranky, with a drain in my armpit where they took out the lymph nodes. That was a real PITA! But I dealt with it.  It was uncomfortable and awkward, but I had little pain, so it was okay. (Some really interesting stuff came out of there, but I don't want to make anyone gag before they read the whole thing!)

Went to see the surgeon to have the drain removed a week later.  I found out that she is baffled by my condition. Everything came out benign.  To quote the report:  "Focally hemorrhagic benign fibroadipose tissue showing no evidence of lymph nodes. When she went in for the nodes, she couldn't pick up any radioactivity (I had been given a radioactive injection which should have landed in the sentinel node.  She used a Geiger counter to find it, but couldn't). And she couldn't see any nodes.  Apparently between my "adipose tissue" (so much nicer than saying "fat") and  a lot of fibrous tissue (this probably has something to do with the lymphedema), they're either non-existent, or really buried.  She thought she got 2, but there weren't any in the sample!

The breast excision showed "margins...free of invasive carcinoma".  There is "ductile carcinoma in situ".  She tried to explain this to me, but I still didn't understand.  However, the oncologist explained it to me clearly.  Apparently there are cancer cells sitting in the ducts in my breast.  They're harmless now, and will remain so as long as they don't try to come out.  That could happen...or not!

The next day I had an appointment with my oncologist.  Between my appointment the day before and this one, she & the surgeon consulted.  They are sending off the tissue for a genetic test (I think I explained that in an earlier post).  I'm still looking at the possibility of radiation, chemo, or "simple" mastectomy.  I told Dr. Awaida  the words "simple" & "mastectomy" don't go together in my brain.  So she explained the 3 levels of mastectomy.  All I ever knew about was the radical one.  Apparently with a simple one, they leave most of the muscle, and just sort of slice off the breast tissue.  That would put everyone's mind to rest, because all the problems would be gone.  But I'm still not sure it's the way to go.

I see the surgeon again next week & the oncologist May 1.  Hopefully by then I'll have a clearer idea where I'm headed.  Nothing is simple...is it...?

I have lots of other things to write about.  I went to a crop & did some pretty cool (IMHO) layouts.  And Lucas has some exciting things pending in his little future.  I also have a new addiction - indie nail enamel! But I'm thinking if you've made it this far, you've done it by benefit of caffeine...so I'll wait for another day to share those goodies with you!

Thanks for all the thoughts and prayers and encouraging words you sent my way.  They help so much!

Enjoy the sun!

Medical Reports and A Cute Little Boy

First, I'll get the latest report from CancerVille (Zynga's newest game?) out of the way.

Went to the Oncologist Tuesday...at the unholy hour of 7:30 AM! I am so amazed (though I probably shouldn't be) at how much things have changed since I last had cancer, 20 years ago! After the next surgery, they will send a specimen to a lab in California (if my insurance approves it). There, they will test the cancer genetics. They will put it into 1 of 3 levels:low, medium, or high. Each denotes the chance that the cancer will recur within the next 10 years. If it's a low chance: no chemo. If it's medium, we look at all the factors and decid

e. And if it's high, of course, we go the chemo route.

Also, my cancer is hormone dependent, as was the other. When I was being treated 20 years ago, tamoxifen had just hit the market, and of course I took it, along with Lupron, thereby suppressing all my hormones, so the cancer had nothing to "depend" on. I was wondering how that would work this time, as I haven't had hormones since 1999! Well, I forgot that other parts of my body produce hormones also! They have recently developed drugs that are specifically for post-menopausal women, which I will be taking.

So...it's definitely radiation & oral drugs; the chemo to be determined.

I have to say that I feel about 110% better just having this information! Now if the physician's office would just call to schedule that surgery! I know they're going to schedule it on a date that isn't convenient for me & they're going to have to change it! Just wish they'd do it!

Now...enough ugly. Let's have some cute! And you know what that means! LUCAS PICTURES!!!

He's been binky (or "B" as he calls it) free several weeks now. It was surprisingly easy, and to celebrate his graduation to "big boy" status. He got a cool, grown-up hair cut! Actually, it was more of a present for Dad & Mom, but still...something for him to look back on.

And, of course, I had to take 10 pictures to get a "good" one. Most of them were like this! He's so ornery!

I could go on, but I won't. Suffice it to say, he is the love of heart, the light of my life, and what gets me up in the morning! He has no idea the burdens he has eased during his sweet little life so far!

Things are looking up...

My surgeon called today. Yes, on a Saturday afternoon! She could have waited till Monday & had her assistant call, but she didn't. She called me today to tell me my MRI was...are you ready?...CLEAR!! FINALLY! Some good news in this situation.

She still wants to get some more breast tissue, since one of the cancers had a close margin. (The cancer cells are close to the edge of the tissue, but not right at the edge.) Also, she'll do a sentinel node biopsy. So another surgery. When I had the lymph nodes removed 20 years ago, I was in the hospital for a week and I was miserable. So I asked her if I could wait till spring when school is out to have it done. I'm not about to leave Karen without someone to watch Lucas if I can help it. The doc explained that it will be out-patient again. She said if I have the surgery on a Thursday, I'll be able to care for Lucas by Monday. Things have really changed!

We discussed mastectomy. Most often when there are 3 cancer sites, a mastectomy is the norm. However, mine were all close together, and she got them all out; so she's leaving that decision up to me. After the research I've done, there's a 1% difference in survival rates between lumpectomies & mastectomies. And if the cancer does spread or re-occur after the lumpectomy, it's usually within a year. So I'm giving it the year. I don't see the point right now of having that major invasion of my body if there's a possibility it's not necessary.

Tuesday I see the oncologist. I'm going to the same one Gary has been seeing for 2 1/2 years. She's young and very straight-forward & I like her. She explains things in layman's terms and answers every question you may have. She also keeps up on all the current treatment protocols.

I'm hoping for just radiation therapy, but we'll see what she has to say.

So that's the journey so far. Looking up for now!

Next step...

Since my recent diagnosis, today is the 3rd day in a row I woke up well-rested & without my waking thought being, "Shit! I have cancer!"

The next step is an MRI, so I've been "trying on " machines. They are built for people who aren't overweight, so it was recommended that look around to find one where I'll be comfortable. However, upon looking at the first one, I remembered I won't be comfortable even if it's the Lincoln Tunnel of MRI machines! Immediately upon stepping into the room, I feel utter panic. (It reminds me of the feelings they talk about on Ghost Hunters, when they measure EMF's!). However, I did find a roomy one and it's nearby. Of course, it's at a Cleveland Clinic lab! Fortunately it's in my insurance network. And I'll ask the doc for a few valium to take the edge off!

Speaking of insurance...the downside of Gary now being on Medicare is that I no longer have a secondary insurance. So I'm being hit with some rather hefty bills! However, once I've paid $2750, the insurance kicks in 100%. That doesn't sound like much...unless you know that my monthly pension is just a whopping $21 more than that! And I'm refusing to tap into savings!

Well, that was boring. Sorry! Wanna hear Lucas play his harmonica? This is his debut performance! We were watching him Thursday evening, and he finally figured out how to play it. He was so thrilled he was willing to take it to bed and let me hold the "B" (binky). Of course that didn't last, but still...

On the creative side, I've been working feverishly to finish a Lafayette afghan. It's a replica of the afghan on Lafayette's couch in First Blood. I'll post of photo when I'm done.

Breasts Behaving Badly

In March of 1991, I was diagnosed with breast cancer.

Last month, I was diagnosed with breast cancer once again. 21 years later....here we go again.

I've decided the best thing (for me) is to just blog it out. I need to put it all somewhere, so I'll start here. Hopefully, the journey won't be so long that this will be an ongoing theme. I know that some of you just may not want to hear it. I'll try to make the titles obvious enough that you can skip them if you so desire.

When I first found out that my mammogram was wonky, the surgeon said that 80% of these types of tumors are NOT malignant. So I sort of felt kicked in the gut when I found out that mine WAS malignant, not to mention the fact that she got in there & there were 3 tumors instead of just one! Ordinarily, 3 or more tumors = mastectomy, but she (Oh..."she" is Dr. Nancy Gantt, the best damn breast surgeon in these parts!) decided to try to get them all anyway. And she did. BUT one didn't have clear margins, so she wants to go back in and see if she can clear out some more potentially cancerous tissue.

Because of the unclear margins, she wants to be certain that nothing else is lurking in there that she may have missed, so my next procedure will be an MRI... that is if they can do it with my knee replacement. So that should be scheduled in 2 or 3 weeks, as they need the inflammation from the first surgery to go away.

The MRI will tell us if I need a mastectomy...not a word I wanted to hear! But I guess if there's more little cancer cells dancing around in there, that's the only way to wipe them out.

No matter what the MRI shows, I will definitely have to have some lymph nodes removed. Had that done 20 years ago and it was awful. But I'm counting on the fact that it's been improved over the years. (After all, I had a similar lumpectomy 20 years ago and I was laid up for weeks! This one is almost healed and I never took a pain pill! So the lymph node surgery should be better, too. Right?) And if I don't need the mastectomy, she will likely still want to get more of the tissue surrounding the naughty node that didn't have the good margins.

I have a lot of stuff to read, including the lab report. The Breast Navigator (I'm sorry, but there HAS to be a better job title than that!) gave me a pamphlet with all the medical jargon in plain English. She went through and highlighted everything that applies to me, so I can refer to it while I read the pathology report. I haven't had the energy to look at it yet. And I probably won't for a day or two. I'm really good at denial & procrastination...

I also chose an oncologist. I'm using the same one Gary has, Dr. Awida. We both really like her and the surgeon says she goes to all the breast health seminars and keeps current.

So far this experience hasn't been that torturous. I'm attributing that to the fact that I watched Gary undergo a stem cell transplant the summer of 2010. That, my friends, is torture! Also, I've had a Total Knee Replacement. Although it wasn't that bad, that's pretty major surgery. You know...severing muscles, chopping up & removing bones, etc. So putting those 2 things in perspective, I can do this.

Also, so far the personnel part of it has been exceptional. The hospital staff were so nice. They listened, they comforted, they were upbeat. And I got a card after my surgery hand signed by all the nurses who took care of me while I was there! Dr. Gantt is wonderful! She's the type of person who can give you bad news, and make it sound not so bad. And she has such confidence, that some of it can't help but rub off.

So that's where I am right now. I'm imbued in the clinical aspect right now. Later I'll allow the emotional aspect to seep in. Not now though. I'm too tired...

Cancer sucks...but shit happens...and there are those (Gary) who have suffered far worse and survived...so I guess I can do this...even if I'd rather it hadn't turned out this way...

A Book Recommendation

You know(or maybe you don't) that I am so excited about the movie, John Carter, coming out in March.

If you are a true sci-fi geek, Star Wars lover, Ring enthusiast...or just curious...you really need to read A Princess of Mars. If you have a Nook (and probably Kindle, too), be sure to do a do a search. I was able to download it for $.99. If you want a book, look around. You're sure to be able to find used copies of it. AND it is on audio book, if that is your preference. I recommend the one narrated by John Bolen. John Carter is a confederate soldier. Mr. Bolen reads in a mild Southern accent, adding a bit of authenticity to the narration.

Written in 1912 by Edgar Rice Burroughs (better known for Tarzan), it is really the beginning and inspiration of modern science fiction! It is so hard to believe that it is 100 years old! It is part of the Barsoom Series (Barsoom is what we call Mars), 11 books chronicling life on Mars. Only 3 of the series are John Carter books: A Princess of Mars, Gods of Mars, & The Warlord of Mars.

It's been a long time since I've written a book report, so I'm lifting a paragraph from the Wikipedia entry. There are spoilers, so if you don't want the plot spoiled, skip down to the video.

"John Carter, a Confederate veteran of the American Civil War, goes prospecting in Arizona immediately after the war's end. Having struck a rich vein of gold, he runs afoul of the Apaches. While attempting to evade pursuit by hiding in a sacred cave, he is mysteriously transported to Mars, called "Barsoom" by its inhabitants. Carter finds that he has great strength and superhuman agility in this new environment as a result of its lesser gravity. He soon falls in with the Tharks, a nomadic tribe of Green Martians, as the planet's warlike, six-limbed, green-skinned inhabitants are known. Thanks to his strength and combat abilities, Carter rises to a high position in the tribe and earns the respect and eventually the friendship of Tars Tarkas, one of the Thark chiefs.

The Tharks subsequently capture Dejah Thoris, Princess of Helium, a member of the humanoid red Martian race. The red Martians inhabit a loose network of city-states and control the desert planet's canals, along which its agriculture is concentrated. Carter rescues Dejah Thoris from the green men in a bid to return her to her people.

Subsequently Carter becomes embroiled in the political affairs of both the red and green men in his efforts to safeguard Dejah Thoris, eventually leading a horde of Tharks against the city-state of Zodanga, the historic enemy of Helium. Winning Dejah Thoris' hand, he becomes Prince of Helium, and the two live happily together for nine years. However, the sudden breakdown of the Atmosphere Factory that sustains the planet's waning air supply endangers all life on Barsoom. In a desperate attempt to save the planet's inhabitants, Carter uses a secret telepathic code to enter the factory, bringing an engineer who can restore functionality. Carter then succumbs to asphyxiation, only to awaken on Earth, left to wonder what has become of Barsoom.".

I have high hopes for the movie. Disney considered stopping production when they were having some budget issues, but it was too far along, so they kept it. I'm hoping it will be worth it! If you clicked on the link about, you saw the trailer. This is the test footage for the movie.

Photobucket">