Monday, March 2, 2009

Gee, it's too bad you (insert questionable behavior here) and gave yourself cancer...

It's an uncomfortable, difficult thing having cancer, and its an uncomfortable and difficult thing to have a friend/family member/co-worker/neighbor/aquaintance with cancer. It's awkward, even painful to just deal with the idea of it - much less the actuality of tackling it. People have been so kind, I've never felt or experienced anything like it, this outpouring of kindnesses, both in words and actions. I've been "the family of", when my father and them my mother got sick and passed away, it's very surreal to find myself in the position of being the afflicted one.

I feel like I'm in the middle of a war, preparing for battle after battle. I'm studying old battle plans (treatment options), speaking with war veterans (survivors) meeting with my generals (doctors), and their assistants (nurses), and choosing the weaponry I will use (chemo, radiation) and choosing a plan of attack (treatment schedule) in hopes of winning the war (surviving!). This isn't the US here tho, I am a dictatorship, what I says goes - which is not as great as it sounds. I must make all the final decisions, congress will not step in and say "no way,that's not a good idea, we aren't funding such a badly planned war!" I get great comfort from the fact that I finally found incredible, experienced advisors in my team at UT Southwestern. They work together, no jockeying for power or infighting here, they seem to do this for the greater good, I truly believe they want to win this war and HEAL ME, I am sure none of them work for Halliburton :) making decisions on the hopes of skimming a buck. At Baylor I felt I had Dick Cheney running my battles, he didn't seem to give a crap about the altruistic goal of making everything better at the end of this war - he only wanted to fill his coffers and get me out of his face - no questioning Dick Cheney! It's his way or detainment in Guantanamo, and a payoff to the highest bidder under the table!

On the advise of all 3 of my advisors, I will go into the hospital (Zale Lipshy) this Wed. morning, where they will knock me out and insert a porta-cath in my chest. Because of my full lymph node removal in my left arm pit, I'm at great risk on that arm for getting this nasty thing called Lymphadema, where your arm swells up horribly and is very painful. At risk forever, I'm never to have a needle inserted in that arm again, they can't even take my blood pressure on that arm. I have great veins in my right arm now, but I'm very right handed, my left has always been pretty much a flipper when it comes to doing anything dexterious. They would eventually kill the veins in my right arm with my upcoming treatment, and most assuredly make it sore as hell - so the porta-cath seems the way to go. Here's a description of the procedure I lifted from a cancer website: "You will have one or two small incisions (cuts in your skin). If the port is put into your chest vein the incision on your upper chest will be about 3–4 cm long and is where the port is placed. There will be a smaller incision above this, which is usually less than 1–2 cm (½–1 in) long. The catheter will be put into a vein in your chest. It will then be tunnelled under the skin from the lower chest incision to the incision above. The catheter is then attached to the port, which is fitted into a space created under the skin. The incisions are then stitched. If the stitches are not dissolvable they will be removed after about 7–10 days, when the wound has healed."

Somewhat of a yuk factor, but what sold me on it, besides sparing my one good arm, is that in the end, it's completely under the skin - nothing sticking out. They puncture the skin with the needle to draw blood, or give you the drugs & chemo. Why are skin punctures good you ask? Because since the evil drain, I don't want ANYTHING that protrudes from the skin 24 hrs a day - ever if I can avoid it! They can start using it Friday morning when I start my first chemo.

I think most people that know me would agree that I am not a sappy, sentimental person. I lean more toward the pragmatic and sarcastic vein of dispositions. All of this trauma and drama with the life threatening disease, and the ensuing outpouring of heartfelt love, support and kindness is totally cracking my hard shell of toughness. I'm so very moved by the kind words, the honest concern, the things that have been done for my family and I and the words of encouragement we've received. I know from experience, from being on the other side of the fence that it can be uncomfortable to face a person going thru something like this, but for the most part it has brought out the best in everyone. The cards I receive are like little nuggets of pleasure I find in my mailbox, each one feeding my resolve to push forward with my battle plan. The little gifts are treasured, ointments and lotions for my battle worn body, magazines, puzzle and crossword books to distract me from the doom and gloom of it all, soft pillows to make my down time more comfortable, beautiful flowers to brighten my room. And the food: Thank God this happened to us after we'd moved back home to the South! Southern women know that food is the ultimate comfort - and necessity for a family with a growing teenage boy - as each generous cache of food is delivered, we all three gather in the kitchen to open containers, poke our fingers in and groan with the pleasure that food delivered with love and compassion brings. Lots of jokes are told about how Southern women show up with food whenever there is a crisis, but it just shows how wise and practical we Southern Belle's are. As a mother, it's one of the most difficult things to find yourself too ill to nourish your family, it's an emotional thing. The hub will never let us go hungry, he's stepped up like I never could have imagined, but his cooking skills are limited, and we can only survive on so much Bubba's, Jack's, Peggy Sue's and Kuby's. I am humbled and moved to tears by it all.

There is an interesting phenomena that has cropped up that I've found disturbing. On several occasions I will be speaking with someone about my condition, and they will state with surprising authority, "You probably got it because you have ________" in that blank you can put, drank alcohol, smoked, drank diet soda's, wore underwire bra's, wore man-made fibers, didn't wear bra's, wore deoderant, lived in the polluted inner-city - the list goes on. The first time it happened I was gobsmacked - speechless. I gave myself cancer, I caused this horrible thing to befall my family? And you're stating that outloud to me? YEOWCH, that hurts. Even if it was a more cut and dry situation, say you are talking to a smoker with lung cancer, an alcoholic with liver cirrohsis, an obese person with diabetes - do you think you are telling them something they don't know, is that a kind thing to say? Are you looking for an apology? And if you truly don't care for this person, and wish them ill, trust me that they are enduring a hell you cannot imagine if you haven't personally gone thru it. And you might be completely wrong, which puts the afflicted person in the position of keeping their mouth shut and moving on - knowing now what you think of them, or in the even more uncomfortable position of correcting you - defending themselves because you don't understand the true nature of their disease. Take breast cancer (please! kidding....) One in eight women will have it in their lifetimes, and that's 1 in 8 random women. Every one has heard of the Susan G. Komen foundation for breast cancer, the pink ribbons, pink products, runs, walks, bike rides, camp outs. These types of things have funded massive research that has given us the ability to really type breast cancers, to find them earlier and to have treatment plans tailored to specific conditions that has vastly improved the survival rates, lowered the recurrance rates, have made a huge difference in the lives of these 1 in 8 women. They've done tons and tons of research trying to figure out the "why" of breast cancer, and there they have been mostly unsuccessful. They find a few things that they say "increase your chances", but with breast cancer the increase they find is really quite miniscule, from a fraction of a percent, to a few percent. 5-10% of breast cancers are in women with the gene mutation, genetic cancer. The general public for the most part seems to have a big misconception on this - several times I've asked women if they've had their yearly mammogram, their response is - "no, I've put it off, but there's no breast cancer in my family so I'm not worried." They should be worried! Here's a few things they know DOES increase your chance of breast cancer, but again - most of them just by a smidge: Being caucasian, being middle to upper class, early menstral periods (before age 12) late menapause (after 55), dense breast tissue, recent or long term birth control pill use and hormone therapy (this is a biggie - get off the birth control after 30 years old and DONT take hormones - ignore Oprah!), Not having children young (b4 30) not breastfeeding, being overweight (over 60 lbs) High alcohol consumption (2-5 drinks DAILY). Again - these are SMALL increases in percentage, and mostly they only apply to the 80% of breast cancers that are hormone positive. I have the hormone negative type - the dreaded "triple negative", which means not many of the above risk factors apply. For hormone negative tumors the only two things they know is black women get them more often - as far as we know my family has no black in it, and it's the cancer women most likely get with the gene mutation, which I do not have. The things they know from exhaustive research does NOT up your risk are: antipersperants & deoderants, bras, lack of bras, abortions, pollution, cigarette smoking, breast implants and working the night shift. All of those things have been rumored to be a cause, but that has proven to be completely untrue. The #1 risk factor they are sure of is if you are FEMALE. That's all, 80-90% of breast cancers show no correlation to any risk factor other than being a woman. What they do know for sure is that early detection vastly improves your chances of survival, no recurrance, and the extent of your treatment. Self exam daily, or at least during every bath and shower. Start your mammograms at the earliest possible time - if there is any breast cancer in your family start EARLY, if you have dense breast tissue start early - if you can, get breast MRI"s when you can. And stay off those hormones of any kind (even tho that wouldn't have affected me, it can in the most typical of breast cancers.)

If you've said something like this to me, please don't think I'm upset - I'm not, and I'm not writing this really to protect myself, that bell is rung. Unfortunately, the odds are I'm not the last person you will encounter in your life facing cancer or even breast cancer, or another life threatening condition. Many people have sent the link for my blog to other's battling cancer, or friends and family of survivors. I've vowed to post what's going on in my war, all the details of the battles and what it does to me and my family. I hope that by reading this somebody out there makes the choice to get that 2nd opinion, to take hold of their treatment plan and do it the way they want, for men to realize how much their support matters, for everyone to maybe understand what their friend or co-worker is facing. So if it crops up, and it has an effect on us and our lives - I'm blabbing about it here. When I took these statements to the hub, we had a good discussion about it. At first he puffed up and was a bit outraged on my behalf (nice), we talked it thru, and both feel it's mostly just folks not knowing what to say, and not being educated on the facts. Hell, I didn't have the facts - would have happily lived my life without them! But not many folks will get thru life without dealing with this battle in some facet of their lives.

So chemo. I've just gone thru my last weekend without it, from now on I'll either be in the midst of it, or a survivor of it. I start Friday. I've been keeping that little fact in a dark place in my mind, trying to keep the door shut on it. I'm very afraid, I dread it like nothing I've ever had to face. I'm doing the hard stuff and on a tough schedule. Chemo and radiation are my only tools, the only weapons for my tumor type, there will be no Tamoxifen or Aromatase inhibitors after - those are for the hormone positive types. This is all they've got for me, I'm 45 which is relatively young, and otherwise healthy, so I have to go for it. The good news is, the triple negative cancer type really responds to chemo - in other words chemo really kills it well - so if any of those nasty cancer cells are lingering in my body, too small for the many tests I had to see them, they can't hide from the chemo. The other good news is that if the chemo works, and I can go 3-5 years without an occurance, I have a less chance of recurrance after that than the hormone positive types. After 5 years I go back to being like all the other women out there - 1 in 8. I know I keep saying I'll post the chemo details, and I swear that will be the next post - before I start Friday! The door to that dark place is coming off it's hinges and the next battle begins, way too soon.

1 comment:

  1. thank you kelly for your excellent blog.
    i was diagnosed with DCIS in september and completed radiation dec. 11. i live in denton and am considering an oncologist in dallas for follow-up. i am taking tamoxifen.
    please e-mail me at
    i learned a lot from reading your blog.
    i have bugged the denton doctors 'til they're tired of me, i have questioned everything.
    denton, tx.