I Convinced the Surgeon . . .

and surgery to remove the chest tumor will occur next Thurs June 23. The surgery should only take 1-1.5 hours. I think I'm only in for an overnight stay.

So, here are my reasons:

1) Herceptin, while maybe slowing the growth of that tumor, is not shrinking it either.

2) Because I am due to start whole brain radiation in late June/early July, the earliest I would add a traditional chemotherapy (which MIGHT shrink the tumor) would be late July/early August. In the meantime, the damn thing would continue to grow in small increments.

3) We don't know for sure that chemo will shrink the tumor. If the wound in my armpit is any indication, it might shrink it temporarily (and remember that was helped along by the immunotherapy I received) but then it grew again. By the time I finally got into surgery for the armpit, the damn thing was 15x12cm large. So, if we wait to do chemo for two months, that puts me into late September. That means this tumor would have 3+ months to grow. I think it's grown maybe 0.5 to 1cm in one month. It could potentially be 3cm larger by the time we decide that chemo hasn't worked. So, I'd end up with a much larger wound than I would have now.

4) I don't have any faith that chemotherapy will actually shrink the tumor. I think going on Abraxane, while temporarily helping, damaged my immune cells (those Herminator t-cells) too much, subsequently allowing the armpit tumor and the brain tumors to grow. I still am not sure if my immune system is fully recovered from it. I have more faith in my own immune system to fight this thing, so I want to do what I can to support my own immune system. I once read part of a book that discussed statistics associated with chemo and I ended up thinking that while you might read something like 33% of patients improved (or whatever the statistic), it said that you needed to look at the actually study - and some studies have small numbers of patients, like 10 or 20. I also know other metastatic breast cancer bloggers who have tried all sorts of chemo cocktails, only to have their cancer progress. I don't want to get caught in that trap. It's not that I won't do chemo if I have to - I will. But at the moment, I won't start a traditional chemo regimen for 6-8 weeks. I will only have targeted therapies.

5) So, it seems that now is the time to strike at the chest tumor, which started growing around February (I think). Nip it in the bud. The surgeon knows he won't get clean margins (as did the surgeon up in Portland). So, there will still be some cancer left deeper, like near the bone. But, to me, it seems that if we get rid of the bulk of the tumor now, then chemo might be more effective later, as there will be less cancer cells to deal with. At the moment, it's about 6x5cm. Something like that.

6) The surgeon, Dr. F., felt that it was more movable than it was the last time he felt it.

7) Dr. F. did warn me that I might end up with a bigger wound than I have there now. I reminded him that I had a large wound there for 11 months before reconstructive surgery with the TRAM flap - at that point, it was maybe 12x8 cm? I also said that I dealt with a really large wound in my armpit for months before the April 1 surgery - and even afterwards. But I also said that the wound care nurse said that the fact that the armpit is healing, slowly, but it's healing, is a good indication that this wound might eventually heal. It'll heal better with less cancer there, that's for sure.

8) That area has had radiation twice, so that is NOT an option. And, the tissue in that area has been compromised due to surgery and radiation, so chemotherapies are not as effective as they might be with healthy tissue. That's another reason why I don't think chemo will do the trick with this large a tumor.

I don't want to wait months only to see it grow like I did with the armpit tumor. So, he's agreed to do it. I hope that it is the right decision. But I figure I'd rather have an open wound with a depression in my chest than an open wound with a 2cm protusion. There will be less cancer there, which will help chemo keep things at bay and which will allow healing.

I really want to get rid of this unicorn boob!

I'm blaming chemo and getting older!! LOL

I am tired today. I guess I walked a lot. But I woke up three times last night (my norm lately is only 1 - a HUGE improvement).

I spent late afternoon and into the evening hanging out with a colleague and my grad research assistant. My colleague, T., was in town from Oxford (I visited him at a symposium in August 2009) and we had to talk about our project on ANCSA. I was supposed to meet him and another colleague at the Society for Human Ecology conference in Las Vegas in April, but the conference happens just three weeks post-surgery, so I can't make it. I'm going to send my research assistant to give my paper for me.

Anyway, we had dinner - and I had 2 microbrews - but I was home by about 7:30pm or so.

This afternoon, another friend called me to ask a favor. He asked how I was doing and I replied that I was tired because I was "out late last night"!!

He then asked, "How late?" and I said, "8:00pm". He just chuckled and said, "8pm is late for you!"

Why, yes. It is!!

Sheesh. I'm getting older!! But I think I can also blame chemo, eh? LOL

Would any of my Her-2 positive readers like a little VIAGRA? LOL

One of the other blogs I read, written by Ann, had the following post about Herceptin, a treatment for Her-2 positive breast cancer. Ann had quite a humorous take on this actual research study . . .

Viagra for Cancer



Enjoy! Thanks, Ann.

This was even funnier today as Herceptin was infused into my veins!!! : )

Dag Nabbit!

I was going to post about how tired I feel today - I felt fine yesterday, didn't over do it, but probably had too much caffeine - but I don't want to talk about that. Suffice it to say that I'll need caffeine to get through today.

But one of my friends posted on Facebook how "dag nab" excited she was about something she was doing later this evening. Then one of her friends (and now one of my friends) posted that today didn't really feel like a "hump day" but rather a "hunker down day". Then some of her friends started joking - one person said he was a hunk but his wife corrected him to "chunk" so it became Chunker Down Day.

Then I saw that the "dag nab" friend posted a link to a BBC comedy sketch on YouTube. It was about an older guy whose blackberry wasn't working. Let me see if I can get the link up here:

My Blackberry Is Not Working

I couldn't copy the link at the moment - will get to it later today - but if you search on YouTube under that title, it's for a program called "One Ronnie", I think. It's quite funny. It helped me to turn my day around.

Joanna says, "Today's Song brought to you fro the Letter H"

One of my blogging buddies posted this parody song. Love it!

Joanna's Parody Song

Wound Humor

Remember that granulated tissue* - the thing growing up and out? - in which I wondered if it was a new lymph node or a new boob?

Well, I posted a link to my blog post on Facebook and one of my friends responded with, "I'm a seamstress. I can make a bra for the growth."

That made me chuckle!

Then yesterday, I posted on Facebook that my wound is draining "buckets" and then she wrote, "Oh, great. Now I have to make a diaper, too?"

I wrote back, "Yes. Can you make it out of Sham-WOW?"

She wrote, "Of course. Is neon yellow okay?"

Ha ha ha ha.

Speaking of the amount of drainage, I wrote on Facebook this morning that the wound is now a "3 sponge" wound. However, I think this is funnier:

My wound is now a 3-pack a day drainer. I had been getting by with one pack of drain sponges a day for several weeks - and even then they hardly got soaked. But now? When I got home from work yesterday, my dressing was already leaking with two packages. So, I upped it to three packages.

My wound has a 3-pack a day habit.

I'm going to have a CT scan next Friday. Because the contrast is hard on the kidneys, they drew blood for a Chem-12 panel as well as a CBC. I noticed that one of the measures (like for sodium or potassium or whatever) was for something called a "BUN". (I immediately thought of "bum" or "butt".)

Fortunately, my BUN is perfect! (BUN is "blood urea nitrogen".)

*The nurse, K, told me today that with open wounds, when the body is trying to reconstruct the tissue, i.e. granulated wounds, the granulated tissue sometimes goes "crazy" and grows all sorts of weird bumps and lumps.

The body sure is weird, eh? I have granulated tissue that needs a bra; the wound needs a diaper because it's developed a 3-pack a day habit; and my BUN is perfect. What more can a girl ask for?

Encouraging Signs?

I saw the wound care nurse yesterday - we changed the dressings we're using again because the wound started draining more the night before. Sigh. I'd gotten used to one dressing change per day with a minimal dressing. Now, it's back to more drain sponges to absorb the drainage.

I saw the surgeon today and he took a look at the wound. He felt that the satellite lesions near the back were softer. He saw that there was more white tissue that might be slough but he didn't see anything to debride. Dr. F also thought that the increased drainage was a good sign that the chemo was working to kill the cancer.

Also that red area that grew a white tip? I thought it might be cancer, but he didn't; instead, he felt it was granulated tissue - i.e., tissue that was trying to regenerate.

Really? That's an awfully unusual shape for new tissue - a long skinny bump? Am I trying to grow a new lymph node? Better yet, maybe my body's trying to grow a new BOOB!! Ha!!

(Gotta keep a sense of humor!)

He doesn't know how deep the cancer extends, so he's ordering a CT scan. I'll probably have that in the next week or so. Dr. F wants to know where the cancer is so he can make a decision about surgery. I'm curious, too, to see where the cancer's at. I fantasize that it's only under my armpit and the deposits in my bone marrow. I hope that it's gone from my lungs and liver.

My February is very busy so I don't think I'd have surgery before the beginning of March. I'm in Hawaii Feb 2-11, at Eddie's school's tournament Feb 16-18, Las Vegas Feb 20-22, and at a cabin in the woods co-writing an article Feb 25-27.

So, in the absence of any other explanation, I'll take Dr. F's opinion as an encouraging sign that treatment is working.

In the Holiday Spirit - with thanks to Cat for this observation!

I had coffee with Cat and Robin and Robin's family on Saturday morning. As Cat and I walked back to her house, she observed that I am definitely in the Halloween holiday spirit!

First, I'm bald. Hair was falling out as we walked that morning.

Second, I told her that I was likely to get a blood transfusion this week (think, vampire).

Third, I told her that some of the dead tissue from the wound fell out while I was taking a shower. It's this tissue they call "slough", which is this creamy almost cheesy consistency stuff. It even sometimes acts like melted cheese, like on pizza, that has that strand of cheese that elongates . . . okay, I think you get the picture. The idea is, though, that I am like a mummy shedding flesh . . .

Now, this morning, I decided that Mount Herminator is no longer a mountain. As I mentioned, it had turned into an eagle's beak, then a floppy flapinator. Now, however, the cheesy creamy slough is located within a somewhat circular depression in my armpit - no more flap of skin over the area.

I decided it's a witch's cauldron, complete with some strange potion of dead cancerous flesh, Herminator-2 cells, and fluids. This particular potion leads to . . . no more cancer!!

Happy Halloween everyone!

Mammogram - Starring My Friend, Heather Kenagy

My friend, Heather Kenagy, is performing this parody of Lady Gaga's song, Pokerface.  It's great!  Her friends have a team raising money for Komen for the Cure next week.  Heather composed the parody My Xeloda for me.  That's an awesome performance, too!

Mammogram, starring Heather Kenagy

Happy Monday everyone!

If I Were To Share a Picture of My Armpit Right Now, . . .

. . . it might look like this:

This Is Cancer

That "Exu" is a Weepy Fellow

So, I presume ya'all read about my latest beau, Exu Date? I posted a link to my blog entry on Exu on Facebook and one of my friends observed, "Boy, it sounds like your date is a weepy fellow!" I replied, "Yes, I kinda pictured myself with more of a 'manly man' to date!"

But geez, that guy is really crying now! He's making a mess of my clothes! I can hardly keep enough "kleenex" around. The wound care nurse even gave me some "Kleenex" that we hoped would last two days and it lasted only a day and a half. Then, of the other dressings she gave me, I totally ruined the clear plastic ones that would cover the dressings and make them waterproof. It folded in on itself (sorta hard to put a dressing on in your armpit, which makes one hand more or less useless - guess you need to be double-jointed, too, with this disease!) and I had to throw it away.

Imagine this: a person standing over their bathroom sink, trying to keep the dressings sterile, with one arm raised, trying to hold a dressing in place with that same hand (c'mon, try to hold a dressing under your left armpit using your left hand! Oh, wait! Just had an idea, how about having a special Olympics category labeled one-arm dressing changes? It is a form of acrobatics and gymnastics rolled into one!), and using the other hand to place another dressing (about 4 inches x 4 inches) in the right place, making sure not to cause the adhesive to stick to itself or to anything else) over a third boob that has a totally uneven surface, with a nice fold underneath that makes it hard to put tape over.

So now I don't have a waterproof dressing and I don't have the clear thin plastic dressing to cover the area to keep it from leaking. At least, until tomorrow when I see the wound care nurse again. And that damn Exu is crying! I am back to changing the dressing two or even three times a day, he is soaking through the dressings so fast.

I woke up with wet under my arm at about 5:30am, so rather than change the thing (which takes about 30 min), I stuck a washcloth under my armpit to make it through rest of the night. It's not a pretty sight. I am already feeling mighty tired of this situation. It was bringing me down, mood-wise, but now that I have tried to paint a comical picture of my Exu-Olympics, I started grinning.

Besides, I kinda like the image of Exu crying. Exu is the cancer, after all, so he's crying because he's losing the fight under my armpit. Go go go Herminator-2 cells!

P.S. I was supposed to be in Norway now, attending the International Conference on Indigenous Place Names in Guovdageaidnu. I am disappointed that I didn't get to see my friends,but on the other hand,I couldn't imagine traveling with these dressings and having to change them frequently or having to contend with leaky dressings or running out of supplies or clean clothes, etc. Best to be at home in case the worst happens!

My New "Date"

I may have mentioned a few months ago that I am attempting to date again. I have gone on only two dates (not surprising given that I am up front with my cancer status). And I have been fairly busy, so I am not trying really hard. But this weekend, I was introduced to my new "date".

His name is Exu Date!

Exudate? Who the heck is that?

Actually, the more appropriate question is: What the heck is that?

For those of you who don't know, it is a clear fluid that seeps or oozes from wounds.

In my case, I don't see an open wound per se, but the skin (where it is purplish-gray) in my left armpit has started to weep from the dying skin.

As I mentioned, the purplish-gray area is tissue necrosis, which means that the tissue is dying, which is a good thing since it means the cancer in the skin is dying.

However, I have no idea how long the tissue necrosis will last, or when things will start healing, or how radiation will affect it and if radiation will slow healing.

In other words, I have no idea yet how long I will live with this new Exu Date.

So I am back to changing dressings daily, this time in my left armpit.

Lovely.

I guess I will think of it as the long slow weeping death of cancer. Yeah, that's it. The cancer is finding out that it doesn't belong in my body any more, so it's slinking away. Or my body is kicking it out. You see, Exu Date isn't a very nice guy. So out it goes!

Man, ya gotta have some humor with this disease!

My Third "Boob"

After my son's birthday party, I grimaced or something and Eddie asked me what was wrong. So I told him that I had a lot of pain under my armpit, then I let him feel it. His response, "That feels like a boob." which I found kinda amusing because I had been thinking to myself that I could start calling it my third boob.

You see, ya gotta keep a sense of humor when it comes to cancer!

Anyway, I had a visit with my oncologist, Dr. K., today. I told him about the increased pain and doubling my pain pills as well as how my trip to Alaska went in terms of balancing the nausea against the pain. I also called the nurse with the UW clinical trial about what they might suggest. The nurse talked to one of their doctors and the answer was to do a biopsy. The UW nurse was concerned about the purple coloring that covers almost half of swollen area.

My acupuncturist says that Chinese medicine would say the purple is stagnant blood. This supports my theory that my increased pain, which started up a few days after my last Herceptin treatment, might be due to Herceptin getting stuck in my armpit.

Dr. K. said that the purple might be caused by the creation of new blood vessels, so the cancer is creating it's own blood supply.

Either way, this is not an optimal situation.

In the end, Dr. K. Decided to do a skin punch biopsy, so he did the procedure in the exam room. I let one of his newer nurses observe the procedure. When you get to this point, you lose any modesty in medical settings. I figure people need to learn the ropes, too.

Anyway, Dr. K. also brought in Dr. McG., my radiation oncologist, to look over the site. The bottom line is that Dr. K. thinks that the cancer is in my skin there. That kinda accounts for the red streaks that are moving up toward my collar bone. Hence, the biopsy. And the reason to bring in the radiation oncologist. I may be in for radiation again.

But I may have to wait until November, after I end my participation in the clinical trial. I will know more after we get the biopsy results. And Dr. K. will confer with the UW docs.

So, hopefully, sometime in the next few months, I will no longer have a third boob!

Boob Joke I saw on Facebook's Shuffle Status application

If Hooters started a door-to-door service would they then be called knockers?

: )

Scrubbing Bubbles

One of my classmates from high school, K., posted the following comment on Facebook after I posted Joanna's comments about Herceptin and fatigue - the fatigue comes from dying active cancer cells because Herceptin is attacking them.

Good news! Kind of like scrubbing bubbles in your body. Cleaning out all the nasty cancer cells!!!

I love it! Do you all remember that commercial? I think I may have to color or create a mandala about scrubbing bubbles!

Hilarious! It sure gave me a chuckle.

That's what friends are for, eh? Making your load lighter with laughter!

And, last but not least, Boobs on the Beach

On our beach walk to California from our house in Brookings, we saw some very interesting pieces of driftwood. But none were as funny or interesting as this one.

I think I found my lost boobs from my mastectomy! LOL



My colleague yesterday told me that I'd probably see boobs on a Rorschach test!

Boob joke

I found the following boob joke on "shuffle status" - an application on Facebook where you can choose funny status posts.

For the first time in 15 years, I'm now able to touch my toes... the only trouble is... I've done it with my boobs!

LOL

Raising Breast Cancer Awareness on Facebook

The last few days, I noticed a few people posting a color as their Facebook status. I didn't realize until I received a fb email that it was only women. The idea was that women were to post the color of the bras they were wearing at that moment to raise awareness for breast cancer - and to not tell those male-types what it was all about. (Sorry, ladies, I let the cat out of the bag!)

Someone I went to high school with, P. (one of those male types), started a chain of comments that I got a chuckle out of, so I asked for and he gave me permission to post it here on my blog.

P. (male) said, "O.K........... What is all this nonsense everyone is posting with just one word describing a color???? Can anyone explain this to me????"

A. (female) replied, "Women are posting their bra color...to raise awareness for breast cancer"

P. (male) responded, "is it the color of the bra they are currently wearing??? What if you're braless at the time of posting??"

T. (male) responded, "To raise awareness for men wearing underwear, we are posting our colors. Let me guess on you Phil, drawer full of tighty whiteys and your comando?"

A. (female) replied, "I have seen a few women post..none.... and yes its suppose to be the color at the time u are wearing......."

J. (male) said, "Speaking for us guys we would like to request that tomorrow you all post your bra size instead."

A. (female) replied, "Oh dear god....that would not be good....not for me anyways....."

J. (female) said, "guys don't get a say!! lol"

P. (male) replied, "As far as Commando Tony, HOORAAH!!!! They don't make cups that big... And I agree with Jim, and pictures should be included for proof!!!! Especially you Amy!! LOL"

K. (female) responded, "OMG...I will now go poke out my mind's eye......."

Ka. (female) said, "if guys have moobs, they seriously need to wear a bra, hahahah"

A. (female) replied, "U guys are too funny"

Deanna (me), said, "I collect boob jokes (I have breast cancer) - and this whole exchange made me chuckle. Can I post it to my blog? (http://deeupdates.blogspot.com). (If you want to see my boob jokes, go to my blog, then scroll down and look under "Labels" to find humor - and there they are.)"

P. (male) replied, "It's fine with me Deanna..."

C. (female) said, "36D - LOL"

Thank you, P., for letting me post this . . . I think what I found funny was the comment about guys and tighty whiteys and moobs. I like it when people turn a joke upside down!

A Holiday Joke (a bit suggestive)

My cousin, Theresa, sent me this joke:


Why is a Christmas tree better than a man?

It stays up for 12 days and nights, has cute balls, and looks good with the lights on!

Ha ha ha ha ha

As my friend said, "That's just so wrong!" OR Pubes on the Boob - LOL

Ya ready for this?

I have a few pubic hairs growing on the upper medial quadrant of my TRAM flap.

Yep, you heard me right. P-U-B-I-C hairs.

Yikes.

A noticed a few hairs a couple of weeks ago, but since there were only a few (3 or 4 maybe), I decided not to really think about it anymore.

But last week, as I tried on new bras that could uplift the TRAM flap side a bit (especially since the implant side has not yet dropped), I noticed more. It's a section maybe an inch and a half long and a quarter to a half inch wide. Most of the little hairs are pretty thin and light, but there are a few that are more noticeable.

Now the upper part of my TRAM flap used to be below my belly button - when the doctor took the abdominal tissue, he basically spun it around like hands on a clock to place it on my chest.

I googled the situation last Friday and found that this isn't all that uncommon. It does happen in a few cases. I can get electrolysis or bleach the hairs.

I may get electrolysis and then I think I may get a tattoo around the top area since the scar line may be a little pronounced and will show with swimming suits and other open neck tops.

You just got to laugh about something like this. Too too funny. Like I told my friends, at least we know the TRAM flap has a good blood supply - or else the hair couldn't grow! LOL : )