Friday, August 28, 2009

How 'bout some good news?

I got my Oncotype score back and I am in the low risk category!

Okay, what does that mean? Well, with a low Oncotype score if I didn't have that pesky micro metastatic bit of cancer in my first sentinel lymph node then I would not have to do chemo. But of course since they did find that .7mm smidge the current wisdom is to do chemo therapy.

So, how is that good news then, you may be wondering?

Well, the Oncotype score is based on a 21 gene assessment of my actual tumor specimen to gauge the aggressiveness of my individual cancer cells. The tests indicate the likelihood of a recurrence. The score is broken down into three categories, low, intermediate and high. Any score less then 18 is low, mine was 16 -- again, if it weren't for the micro mets in my node, chemo would be out.

Now, my oncological surgeon felt that my positive node was due to something called displacement...basically when they remove the tumors from the breast during biopsy or surgery some microscopic bits of cancer can break lose and end up caught in the first sentinel lymph node. That's far different than if it migrated there by itself, if the cancer spread of its own volition.

However, usually if there's a positive lymph node then they go back and do an axillary dissection, meaning they take out all the lymph nodes. This is both to diagnose if the cancer got further up the system and potentially could have spread elsewhere and to prevent a future recurrence in the lymphatic system later. But my second sentinel lymph node was clear...and while it's technically possible for cancer cells to skip nodes along the chain, it's not as likely.

Plus I've been scanned up the wazoo throughout this whole process...from MRI, PET, CAT, and a few other initials combinations tossed in for good measure. Not one suspicious bit of anything anywhere else.

What this all says to me is that while it's unfortunate I may not know for sure how that microscopic tidbit of cancer hit my first node, it is good news that my recurrence rate would probably be low to begin chemo should successfully annihilate any unlikely but potential malignant cells that could have theoretically made it out of the breast.

Sooooooo......I am fairly sure I'm going to get to forgo an axillary dissection, which my surgeon agrees with as well, tho some oncologists might disagree -- in fact, this is a hot button issue in the cancer world right now. But I feel that this is the right course of action. Losing your lymph nodes can lead to some major life-long health issues that I don't want to deal with if I don't have to.

Chemo is still necessary just in case, but it is also very likely overkill (literally) and that makes me feel better somehow. Well, sort of.

The other bit of good news is that my wound has made wonderful progress according to everyone that looks at it -- the plastic surgeon, the visiting nurse and the hyperbaric RN's & MDs. I can't really tell too much of a difference yet myself but all assure me that I am healing rapidly and whatever I'm doing I should keep it up.

So, what am I doing? Along with the hyperbaric therapy I am consuming protein, protein, and more protein -- that's what wound healing needs most. Additionally I'm eating plenty of nutrient rich vegetables and grains and practically no sugars. And just to be extra sure I get my vitamins I've added some supplements that promote skin health/growth: A, D, zinc and iron (I was found to be iron deficient from the surgery due to blood loss). I'm also taking something called QBC-plex and a homeopathic remedy called Arnica. Those last two were highly recommended by someone on the message boards at -- and after researching it myself I thought they sounded like exactly what I needed. My wonderful nurse discussed it with me today and she wholeheartedly agreed with my choice -- always a good thing to have traditional medical professionals check out anything supplemental one takes.

Well, there you have it, my good news for the weekend -- many thanks to all who gave me extra love after my last post, your lovely kindness, that good cry and this heartening Oncotype score has lifted my spirits immensely :)

Have a great weekend!!!

Wednesday, August 26, 2009

The tough cookie crumbles

Actually, as falling apart goes this was relatively minor...but since the cookie reference was fresh (good pun!) I decided to go with it.

As mentioned in my previous post I've been doing Hyperbaric Therapy -- last week due to scheduling conflicts I only did three days, Mon/Wed/Fri. This week I was determined to go all five days, so yesterday was the first time I did two days in a row. Last week my ears had a chance to clear on the in between days and I wondered if I would be able to handle this week.

Apparently not.

My ears are extremely full, everything is muffled and the tinnitus is significant. Btw, around here we call tinnitus "brain music" to make it sound less negative -- which inspired the name of my other blog, incidentally :)

However, this is not what crumbled the cookie...maybe it took a nibble but it didn't finish me off.

This morning I was supposed to go for a MUGA scan, this is basically a radiological scan of how my heart functions. They need to make sure it is healthy before giving me certain chemo drugs, essentially because they can damage the heart. So yeah, let's make sure it's nice and healthy before we potentially wreck it.


They need to start an IV for the test to be administered. Since having my sentinel node biopsy I am no longer allowed to have any needles or blood pressure done in my right arm for fear of lymphedema. Problem is, I have difficult veins, so I've been told, and now there is limited access with one entire arm out of commission. They tried to do the IV three separate times. It's more than just inserting a needle, the nurse said something about having to thread it in further.

It hurt and I started to cry...and just couldn't stop.

Now, considering EVERYTHING that has happened to me, surgery, a somewhat difficult recovery, necrosis, wound issues, debridement,'d think a simple IV would be nothing. But after the third attempt I had to ask them to stop. I couldn't recover myself and had to leave, promising to reschedule between my sobs.

I canceled hyperbaric, I just can't do it three days in a row. I am now planning to spend the day catching up on simple things, resting and making a food shopping list for DH. Maybe if I'm ambitious I'll take a shower.

Then tomorrow I bake a new batch of cookies.

Sunday, August 23, 2009

H. O. T.

As in Hyperbaric Oxygen Therapy. I’ve had three treatments so far, 17 more to go. It’s been, shall we say, challenging. In short, let’s put it this way -- I will never become a SCUBA diver.

In HOT you are placed in an airtight glass tube and breath 100% oxygen (usually we breath about 20%) while at the same time you are under greater than normal atmospheric pressure. It can increase the oxygen levels in your body tissues which better enables new blood vessels to grow and can also help treat/prevent infections by supporting white blood cells.

The language the hyperbaric doctors and nurses use is very much like that used by divers -- they talk about taking you down to a level of thus & such feet, but of course you are not actually moving, it’s just referring to the amount of pressure.

My biggest problem has been with my ears. During your descent (again, not really moving) you are supposed to clear your ears…swallowing, yawning, pinching your nose and gently blowing, that sort of thing. Some people can do it a few times and be done with it. Not me – they have to descend me slower than usual and I have to clear my ears vigorously during my entire descent (about 20 minutes). Once I’m down to the right level I lay there watching TV and trying to hear it above the constant whooshing noise of the air. I stay like that for 90 minutes. After that they bring me up slowly again and my ears sound like Rice Krispies on steroids (normal)…but unfortunately they don’t quite fully clear. The doctor examines my ears each time, and each time they are red and have bubbles behind the eardrums. I’ve been repeatedly assured by the hyperbaric doctors and my own private ENT that my ears are in no real danger; it’s just very uncomfortable…like the congestion one might have with a wicked cold. By the time it starts to go away I am back for another session.

Another challenge is that I already have chronic tinnitus. It’s a long story I’ll tell someday but at its onset I was driven nearly insane by the constant ringing, so much so that it drove me to therapy. I managed to overcome it but this process makes it a bit of an issue again so I’m having some anxiety problems as well (as if I didn’t already!)

Not to toot my own horn, but the doctor who runs the hyperbaric program said I was one tough cookie – and since I usually don’t see myself that way I took it as a compliment.

The other challenge is that this place is quite the commute, 45min to get there and about an hour to come home since I hit rush hour traffic. When you add it all up it takes at least 3.5 hours out of my day. I now have a part time job – healing this wound has taken over a huge chunk of my life to say the least.

But bottom line, I am grateful to have the opportunity to do this. It will help to speed my healing which is crucial since I can’t start chemo until this wound is completely healed. The more things I can do to encourage healing, the better. And despite the hassle and challenges I think this therapy is really very interesting and could be promising for a lot of people with various medical problems, so I hope that by sharing this little smattering of info it helps someone else who may need it :)

Thursday, August 13, 2009

Update: time

Accomplished what I set out to do: convinced oncologist to send my specimens to Oncotype & plastic surgeon from different hospital prescribed hyperbaric therapy. The two hospitals we went to were far enough apart that it took the whole day. Spending that much time in a car in my condition is not the most comfortable thing in the world, let me tell ya.

The dual issues I am dealing with now are figuring out what kind of chemo I need and how long I can safely wait to start it. Wounds don't heal on chemo, my breast needs to heal, so the longer I can safely postpone chemo the longer we can wait and see how much more my breast skin heals before we go removing any of it that doesn't look good. Every day counts and every spec of skin does too.

Aside from the when we have the question of what, as in what type of chemo. According to this oncologist, no surprise -- I'm in the gray area. Some would treat me as node positive, some as node negative. Some would also recommend going back and removing all my lymph nodes, others would not.

So, first up -- I need to do find a breast pathologist to reassess my sentinel node biopsy to get a more accurate picture. Thing is, pathologists usually don't talk to patients directly...they do their lab bit and give reports to other doctors. Here I go again, bucking the system. See, this is why doctors don't know what to make of me, lol.

For now, I have alot of waiting to do. I wait until Thurs for my plastic surgeon to come back. I wait to find out my Oncotype score. I try to find the breast pathologist. I start hyperbaric therapy -- where I lay in a tube for 2 hours, 5 days a week waiting for the oxygen to do its thing. I wait to see how much better or worse my skin gets. Besides that, I keep researching.

This is getting to be same old, same old. I thought after the surgery things would be straightforward for a while, either chemo or no -- simple, definitive, no more vagaries, no more decisions for me to make. I thought that my days of Googling my brains out and seeing a gazillion doctors each with vastly differing opinions to wade thru would finally be over.

What the heck did I do with my time before all this cancer shit???

Tuesday, August 11, 2009

Something is wrong!

The incision looks bad, something is wrong. Skin very dark, seeping, sunken in. Am getting the kids ready to head for the hospital ASAP. Will post an entry when I return, might be late today. Pretty freaked out.

Any and all prayers, vibes or good wishes are welcomed with open arms & heart. Wish me luck!!!!!

Sunday, August 9, 2009

2 weeks post op: not all is dark...

...literally & figuratively.

1 -- As to the final pathology report on my lymph nodes, there's some potential discrepancy. Seems that there can be displacement of cells at the time of the sentinel node biopsy itself that may account for the micrometastasis of cancer detected in that first node. This is of course different than if the cancer cells migrated there themselves. It is also a strong possibility in my case, strong enough infact that the surgeon doesn't want to remove any more lymph nodes, which is the usual practice if any cancer is found in the sentinel node.

In addition there are two different methods to test nodes and one is more sensitive than the other, which it is believed accounts for picking up these misleading micrometastases. Not to mention the current prognosis/treatment protocols are based on the less sensitive method.

Guess who is calling the pathology dept ASAP and hounding the pathologist with multitudes of questions?

This link explains everything for those interested or needing info.

Bottom line: According to my researach I should have my specimens retested by a breast pathologist. Yup, doctor search, here we go again. More on all that as the situation progresses.

2 -- The other HUGE piece of news is (drum roll please):

I finally looked!!!!!
The good: The shape of my breast is amazing -- even tho it's a little perkier due to swelling you can see that once the swelling goes down it will probably darn near match Lefty perfectly. And even if it didn't droop one bit more it's pretty darn close already. Michael was right, it does look exactly like me only really, really beat up. This is SO not what one thinks a mastectomy looks like. Only the colors of my skin show the signs of my ordeal. Truly, the breast shape itself looks totally normal. The visiting nurse was aghast, she didn't believe I'd had a mastectomy.

The bad: The skin is dark and it's freaking me out. It's every shade of purple and wine you can envision. The very center of my nipple is particularly dark, almost but not quite black, and a little hardened. The plastic surgeon says there are no topical ointments, no treatment -- and she can't judge or predict if it's going to get better or this is the beginning of the end either. And then even the end isn't necessarily the end -- sometimes when skin dies new skin underneath is healthy and pretty. We just have to wait....there's nothing to be done but wait and see.

In case you haven't guessed, I'm not real good with the whole wait and do nothing bit.

So, I've been on the Google prowl for everything and anything I can do to increase blood circulation and improve skin health. No lotions or potions -- I'm following doc's orders there. But food & vitamin-wise, I'm on it. From beta carotene to licopene to protein and diet is getting stuffed w/as much nutrient dense food as I can stomach and a few carefully chosen supplements tossed in too.

I'm trying not to get discouraged while at the same time bracing myself for the worst in terms of losing some/all of my NAC. Honestly? Not sure I can handle it if the worst happens...just the thought of it is too much right now even as I write. After all this to lose it would feel so unfair I can't even go there without falling apart.

Which brings me to the third and final issue...

3 -- Putting the above aside, otherwise my emotional state actually seems to get a little less dark day by day. There are still periods of true despair, but I also can now see them punctuated with some vague sense of normal moments. Like now, as I write this...I probably feel as good as someone in my position could. Yet hours ago I was completely lost and beyond hope. "Mood swings" doesn't even begin to cover it! But at least there is some light creeping in...a thin glowing sliver through the cracks.

So, I'll end for now on that positive note, only to add a thank you to each of you reading this. I know that flicker of light is in no small part fueled by my readers, friends & family.

Thursday, August 6, 2009

UPDATE: The good, the bad, & the ugly

I'll start with the ugly and work backwards so as to end on a more positive note -- as much for myself as for my readers.

THE UGLY: The final pathology report came in: there was microscopic cancer found in the first of my two lymph nodes. I believe this means my cancer is now Stage II (B). This was not the news we were hoping for. I found out only a few hours ago and am pretty devastated right now. I've more research to do but this really knocked us flat.

THE BAD: I have been in a very dark place emotionally....way before the final path report today, in fact it's been creeping up on me since I came home. I cry on and off all day, can't sleep and vacillate between deep sorrow, simmering anger and this nagging feeling of vague regret. Intellectually I know I had no choice, but it feels like I took a perfectly healthy body and mutilated it. The feeling of loss is almost overwhelming. I don't know how to write about it now...I've lost a little of the will to blog and perhaps that scares me most of all. This feels like the worst post partum I could imagine, which is also disturbing to me on many levels.

THE GOOD: I got my drains out today (3 of them), which makes me feel waaaaay more human and means I can shower. My pain is slowly decreasing little by little each day. More importantly, the margins for the rest of the breast are clean -- which is especially good because they did find more cancer there after all -- mastectomy was indeed a good choice. The nipple/areola complex gets to stay (if it survives) -- that came back clean too. My children are coping well and DH has been with me every step of the way. I don't know what I'd do without them.

So, that's the state of affairs at the moment. Will keep you posted. Any good thoughts and vibes are perpetually appreciated more than words can say.

Saturday, August 1, 2009

Post op post

Yes, my intrepid readers, it is me, in the virtual flesh -- or what's left of it!

I wanted to put up a post to say thank you for all your support and encouragement....I've thought of so many of you this last week, you have helped me in moments you might not have imagined. Words you have said came back to me in times when I really needed them.

I am still a total wreck, but each day I see a tiny bit of progress. This has been an even rougher road than I could have possibly imagined.

Aside from the post op illness, I've been told by my mom that my plastic surgeon is an artist, by the visiting nurse that this is the best reconstruction she's ever seen, and by Michael that I look just like me, only beat up :)

I cannot seem to bring myself to look.

The next hurdle, cancer-wise, is to get the final pathology report back all clean -- no node involvement, no NAC atypia, nice clean margins. That is what I am longing for with all my heart. I think once I know that what is there will be staying I can look.

The skin issues are still on the fence, but they are not likely to be dire and seem to be perhaps about ready to turn the corner in a positive direction (fingers crossed) feel free to send more capillary vibes please!

Will write more when I can...much love & gratitude!!!!