Friday, March 27, 2009

Here's a mom with cancer you can help!

I can't tell you how many times folks have asked me "how can I help" over the last couple of months. It's very difficult for a type A, get it done person like me to actually accept that help. But I have, because I know it's helped my family so much, it would be foolhardy and selfish to not let these kind people help us when we need it. I am humbled and if I think about it too much I'll get all teary - again. The meals, the gifts, picking up things at the store - mean so much. But other than those small things, there's not much anyone can do for me except be my friend, stay in touch, make me laugh. The friends, family & co-workers that surround me give those priceless gifts to me daily - and am so grateful.

But REALLY want to help a 40 year old mom with cancer? If you are in Dallas this weekend you CAN! This local mom, Karen Mellow Stock has lymphoma, which is a much more grave diagnosis than what I'm dealing with right now. A bone marrow transplant is what she needs to live. It takes a HUGE amount of people to sign up to find that one match - could it be you? You very well may be walking around with the precious marrow just lying around in your bones that can save this mom's life! How awesome would that be? And if not her, it might be the 8 year old little girl I saw on the Bone Marrow Transplant website that is waiting for her life transforming/saving transplant - or any of the 10's of 1000's of others.

Spring has sprung in Texas - and you need a new outfit. Trust me you do - those old shorts you wore this week are looking pretty shabby. This Sunday 3/29 at NorthPark Shopping Center - noon to 5 - show up and let them just swab your cheek - then go shopping. Who knows, you may get the phone call to save a life - THAT is what you can do to help me, to make ME feel better!

You can see the article I read in the paper this morning here:

Or here's a blurb with the deets:

On Sunday, March 29th, at NorthPark Center (lower level near Dillards department store mall entrance) from 12:00 p.m. – 5:00 p.m. my friends and family are holding a bone marrow drive in conjunction with
DKMS, the largest marrow donor center in the world. This provides an incredibly easy way for you to register to be a bone marrow donor and potentially save a life.

A few things you should know:
You don’t have to give blood or bone marrow to register. All you need to do is swab the inside of your cheeks and send it to a lab to be tissue typed. Once you are processed, your information is stored anonymously in the registry until your 61st birthday, unless you request to be removed.

There is a misconception that donating bone marrow is a complicated, painful procedure. There are two ways to donate. 70%‐80% of the time, stem cells are collected from the donors’ blood, similar to donating
plasma. 20%‐30% of the time bone marrow is withdrawn from the hip (not spine) using a special syringe. It is an out‐patient procedure done with local or general anesthesia.

When you register as a marrow donor, you have the potential to literally save someone’s life. All it takes is a cheek swab and a form.

Mark your calendars and bring a friend on Sunday, March 29th. You could be the one!

Tuesday, March 24, 2009

"Have you come to terms with your mother's DEATH?"

That's the question the family therapist asked me when we met with her a few weeks ago. I just don't even know what to do with that question.

I was always a daddy's girl - always. I always felt like he and I were so much alike, our glass was 1/2 full, deep down we felt like we could do anything if we really wanted to. We were the kind of people that just plunged in, if we wanted to do it we'd find a way! And we'd most likely find a way to enjoy accomplishing it, too - to hell with those silly nay-sayers out there. My mom - and my brother as well - they were more careful. Watch out! Don't you see the dangers there?? THIS could go wrong, and THAT could be bad! It was good he and I had that balance with them, but we knew that forging ahead could gain us anything. I've always said I won the Lotto in the parent department, I loved them unconditionally my whole life - and knew they loved me as well, no question. As my mom always said "we may not always like what you do, but we'll always love you, no matter what." I'd have to push "what if I killed someone?" She'd say, "well we'd hate what you did, but that wouldn't change how we love you one bit. We will love you always - no matter what." So my dad would encourage - dang near anything I wanted to do - my mom would fret, warn and lay out all the dangers. And I would feel secure in my life of trying whatever came my way, always knowing that my amazing parents were just right behind me, ready to catch me if I tripped, comfort me if I was hurt. But I was a daddy's girl, I knew he and I really had it all figured out. All that worrying and fretting was mostly a waste, wasn't it?

My dad got sick in 1988, he had a cough he couldn't kick. We took him in for a tonsilectomy (he'd never been in a hospital before, never had anything removed before) after surgery the doctor came out and said it, instead of bad tonsils he'd found cancer. Those first few weeks I was really worried it was going to kill my mother, I didn't really believe anything could get my dad. Either did he, the prognosis was not good - but he was going to do everything and anything they had and he was going to beat it. For 18 months he did just that - any and every awful, horrible cancer treatment his doctors could think up. For the last 10 months he could not eat via his mouth or speak - and he and I both lived to eat and speak - but he kept at it, he never gave up. My mother came to terms with the fact he would not survive long before I did - and I don't think he ever did, even that last week when hospice came in, I know he thought he was going to find a way to beat it. Whenever we'd ask him what his wishes were for after he died he'd either say "freeze me and drive me in the ground like a stake" or "put a bone up my ass and let the dogs haul me off". Those were the only instructions we had to go on when he finally passed away. See where I get that? Hell, that was 20 years ago and I couldn't say yes to have I come to terms with HIS death, much less my mother's a year ago.

When daddy was sick and after he died, my mother announced to anyone and everyone that would listen that she would not ever take cancer treatment, nothing no way no how! My sweet husband would try and talk to her - Hey Katy! Remember the whole bone up the ass thing Leroy said? Remember how not useful that was when we were in the casket room at Sparkman? She'd just say "call Dr. Kervorkian if anything happens. He'll take care of me." She pretty much did not see a doctor for 20 years - and this was from age 62 to 81, mind you. When they put Dr. Kervorkian in jail, we were living in California. Stephen said "Call your mother. Ask her for her Plan B". You need to understand, Stephen loved my mother so much. From shortly after my dad died until she died last year, he always tried to talk to her about living with us. And she always rolled her eyes, blew him off. "you don't need me in your hair! that would be awful!" But he did mean it, he very much knew how special she was, and that she was just the most precious thing to me.

I may have been a daddy's girl, but after he died my mom and I became as close as a mom and daughter could be. We spoke on the phone every day. I guess we built up to that, I don't think it started out as every day - but those last 10-15 years? Pretty much every day. Some days more than once, it started while we still lived in California, and was even more so once we moved back to Texas. It went both ways equally, she called me, I called her - we just talked, every day. About everything and nothing. My son was saying not too long ago - I remember that Meemaw called us everyday, the phone would ring and I'd just know it was her all the time! He said he misses that. Yeah, me too.

For over a year before she died we knew she was getting more frail, not doing so well. She was always the picture of health - spry, energetic, so very self-sufficient and independent. She always said my dad and I were hard-headed - HAH! We had nothing on her. She did what she wanted, when she wanted - and if she dug in? There was NO CHANGING HER MIND. I constantly wanted to take her to my doctor - who is an old friend AND her best friends doctor as well! No way. Her feet hurt - I have a foot doctor! No way. But that last year she just seemed to ... fade. That Thanksgiving I spoke with her best friend, we were both worried. The week after Tgiving we started making calls, got a Senior Social Worker lined up, were getting meals on wheels lined up (she was getting frail) and we planned to do a "senior citizen intervention" the following Monday - she was getting help whether she wanted it or not! But as per usual, she did it her way. She had her other best friend take her to the emergency room that Friday before our scheduled intervention. What an awful phone call, "we have your mother here in ER, she's extremely anemic, we are very worried....". And so it went. She had water in her veins she was so anemic. So weak she couldn't walk without assistance. We ran test after test. She didn't argue, wasn't uncooperative - but offered up no clue as to what was going on. She'd been there 5 days when they did a bone marrow biopsy, and it showed cancer. It showed breast cancer. The next day we took her down to do an ultra sound to see if there was a tumor, when they opened her gown...there it was. Her breast was malformed, she HAD to know - but never said anything. And she got her way, once again, it was far too late for any treatment at all. We moved her to the nicest care facility I could find, I'd hoped they could give her some physical therapy, that she could get stronger for a while, maybe we'd have a few months with her. It didn't happen. We had her with a pretty sound mind for 3 more weeks, thru Xmas, but 12/27 she started to fail - she was in pain, I signed off on having her medicated. We brought in 24 hour hospice on 1/3/08. On Saturday 1/5 they called me first thing in the morning and said "we think this is it, she's showing signs that she'll go very soon." my brother & I, his oldest son and his wife all went there right away. She was in a coma, not responsive at all - but I said "let's just talk about how great everything is, how well we all are." The 4 of us spent the entire day there around her bed, laughing, telling stories - being happy as we could be. The hospice nurse said "she hears you. her vital signs have strengthened right up. she's peaceful and no longer failing...". Finally that night we all went to dinner, my brothers & my family's, all the kids. Within 2 hours of us being away from her I got the call. Right after we left she started to fade again, and she just peacefully slipped away. I should have known. She would never die in front of her kids! She would think that was somehow rude, or that it would cause us pain or distress. All she ever wanted, her whole life, was for us to be happy, to have anything we wanted. So she had to slip away when we weren't watching.

Have I come to terms with my mother's death? Hell, I don't know if I've come to terms with my father's death almost 21 years ago - I don't even know what "coming to terms" means. But I do believe this - my own condition is making a difference in my dealing with my mom being gone. That gigantic hole she left in my life, that time I spent with her every single day - for a year I just had no clue what to do with it. I didn't reach out to anyone, who could take that place? To make matters all the worse, her passing left a problem with my relationship with my brother, leaving another huge hole in my life. So I guess I can say - for that first year, until I had to deal with my own breast cancer - I was not coming to terms, I was biding my time. So if there's one thing my diagnosis has done, it has jerked me - sometimes kicking and screaming - into the present, into "dealing with" everything once again. There is no hiding, not my feelings, not anything in my life really. I feel quite the open book these last few months. With old relationships and brand new ones - I feel so much with it all. I'm learning a lot, what's important and what's just totally not. If you feel it - say it - time is precious. My mother said to me in the hospital, "I've just been waiting every year to join your dad. I never thought I'd last this long." That was the one thing she said that made me CRAZY. It makes me crazy to this day every time I think of it. My father never got to see my son, or my brothers 2 youngest sons. He never got to see my brother & I finally happily married, finally in relationships that some how honor our parents relationship that we were lucky enough to grow up with. What he wouldn't have given to stay, to be there for all those things my mother got to do! She was such an enormous help to me those 14 years she was around whilie I raised my son - how much I would have suffered without her help, her guidance!

So I know what I'm not, I'm not her and I will do whatever it takes to be here for my family. But I'm not my dad either, I'll be realistic if more health curve balls are thrown my way. I have come to terms with what happened to their health, I have learned from the way they each handled it - so very differently. What I wish is to find strength in their struggles, to learn from them still, even tho they're gone. I'm lucky in my legacy, I want my son to feel that same way some day, when he recalls me. I hope that is far, far down the road, but whenever it is I hope my struggle gives him strength one day.

I can so see he and I on the phone all the time, I hope my relationship with my mom modeled THAT for him as well. How selfish is that of me? SO WHAT. I will expect those phone calls...I'll expect him to remember how much we missed those Meemaw calls when they were gone.

Sunday, March 22, 2009

Hair today, gone tomorrow

On Wednesday last week I went and had my hair cut short. SHORT, barely long enough to cover the tops of my years. If you aren't my brother, my Aunt Pat, Uncle John or Cousin Jimmy - you've never seen me with short hair. I was last 4 yrs old when I had short hair, it came time to start Kindergarten I told my mom & grandma NO! I would decide when they cut my hair! And proceeded to grow it down to my waist. I haven't had waist length since I was about 15, but it's always been longer than my shoulders. Very thick, very shiny - pretty low maintenance for long hair - which is good, because I'm a low maintenance kinda gal. So the precious duo of Brit & Bret - hair & massage, life partners, parents of a fabulous daughter my son's age - supported me thru the haircut, he also trimmed up the wig that I didn't like. The haircut was......kinda awful, but it made the wig look good. I had been told the hair starts falling out about 14 days after treatment, Wed. was 12 days - my next chemo was Friday, so technically I wasn't doing it too soon. But that night, Stephen walked in and looked at me and looked......kinda devasted. I said "it's awful", he said "no. no. I guess I didn't think about how your physical appearance was connected to your glorious mane of long hair........" Yes, he said THAT. It made me cry. Maybe I had jumped the gun? Maybe I shoulda waited a little longer?

That night I tried on some of the hats, the scarves, the wig. I modeled them for my son, he said "'it's like you're in disguise!" To his credit, none of it seemed to bother him a whit - not the hair, not the "disguises", he truly doesn't seemed to care. The next night I was getting my stuff together late night for my early morning chemo appt, I scratched my head hand was full of hair. Just like that. For chemo the next morning I put a scarf on - with my hair coming out the front. Honestly, I could wake in the morning with my long hair, run a brush thru it and it was JUST FINE, lying like it was supposed to, hanging off my head. But this short crap? You wake up and look were on an all night bender or something. Short hair is easier? Not for me it's not. Any hoo - I go to the bathroom at UT while waiting to be called, I look in the mirror and start plucking at the bangs hanging on my forehead - and they all fall out into the sink. Too soon for a haircut? Nope, not a bit. Now it's coming out in handfulls. It feels a bit like hay, Hair may be "dead cells", but it's a completely different thing when it's no longer attached to your head - it's really, really dead. And as anyone that knows me knows, I have a TON of hair, even short. Remember our Husky, Taxi? Every spring he'd start to shed. And shed and shed and shed. We'd brush him, reach in and pull out handfuls of fur - we'd fill grocery bag after grocery bag - but we couldn't make a dent. He was a Northern California doggy, once we moved to Dallas his body didn't know what to do with the sudden heat. We'd take him to the Perky Poodle and they'd shave it off. He'd look RIDICULOUS, but he felt better and the mess was ovah - worked every time. So now that's me, endless clumps of hair, and it doesn't seem to have an end. So - I'll have to get a shave as well. Should I call the Perky Poodle?

After my first chemo, as I posted, I felt BAD. For about 5 days it was pretty awful. I even thought I was anemic, but it turned out to be dehydration and weight loss. After the 5 days I started to feel better. Not the same, not normal - but way better than those first 5 dark days. I ate - I HAD to eat, when I'd get hungry it was like - MUST FEED THE BEAST. After I ate it generally was a little dicey for 1/2 hour to an hour, I felt a tad queasy while I digested, but then it passed. I started sleeping again - which was a humoungous relief. And I went back to work. I started on Thursday after my treatment the previous Friday with a 1/2 day - then I worked all day for the next week, until my next treatment. I would get tired, my energy wasn't as high - but it was OK.

A couple of days before my treatment, one of our sweetest of pet sitters, Carol dropped of a cap for me. It looked hand knitted, I left her a vm saying I've always wanted to knit, but only have been able to master crochet. She answered back - it is crochet, I can't knit! It got me to thinking....In my life I've crocheted several baby blankets. It started when I was 15, and wanted to make a blankey for a couple that had been very kind to me. My mom helped me pick out yarn and got me started - and I made a lovely blanket. A year later my brother and his wife were pregnant - and I made another one. I made a big one for my son when I was pregnant. And of course he came 6 weeks early, but I had those 3 1/2 days of labor to crochet like a fiend and finish. My last baby blanket was for my niece Lilly - and she loved it, it was her blankie. The last time I decided to do a blankie I bought some really difficult, furry thread. I ended up giving up - so it's been 10 years since I did needle work. I decided - I'm making a blanket for me. In the past I would call my mom - "I want to do a blanket. What size needle do I need? How many skeins to make it X size?" but I was on my own this time. Thursday night before chemo Stephen and I set out to run errands together - how often have we taken the time to do that together in the last few years? Mostly it's divide and conquer, so it was nice to go together. First stop: Michaels. Tons & tons of yarn - I'd never picked out yarn for an adult blankie, so I wasn't sure what I wanted. Stephen actually found what we got - it's different, it's beautiful, it's soft - but made in a way that it's manageable - meaning I can handle it and I won't quit. We found a multi pack of needles so I could figure that out, and bought the 5 skeins they had of it. I started it at chemo on Friday, I got it going on the 2nd try - and it's really quite lovely and soft. After I finished my first skein - about 24 hours after starting - I measured and decided this would be my biggest blankie - it takes a big blankie to keep you safe from CANCER - I measured it out and got online and ordered 9 more skeins of thread. I figure I an finish it by the time the chemo is over. It's very.......calming, this sewing and creating. THANK YOU CAROL - for making me remember my joy in blankie making.

We went on the stock up on the pet supplies, then off to the Container Store. We both LOVE this place. We found a nifty hanging shoe holder that nicely holds my scarves and hats, as well as this cool hanging plastic jewelry holder - for earrings. We both decided that long dangley earrings are a MUST with the no-hair situation. I hate digging around in jewery boxes for earrings, this dandy $9.99 thingy is very cool indeed. We then went to Bag & Baggage next door and got a tote to take to chemo, or any appts that holds our stuff and my new sewing project. We ended our evening sitting outside at the Cheesecake Factory - a beautiful spring night in Texas. I'm glad we did all that, because I'm back to feeling pretty awful post-chemo #2 - it started Friday night, early evening. It was quite similar to last time - I felt crappy that night, but I slept all night. Saturday I was OK - weak, but OK. Saturday evening it got worse and worse and worse. Last night was a nightmare, 1 1/2 hours of sleep, stomach pain from hell, awfully queasy. And night sweats, thrashing and misery all night long. I'm thinking the chemical induced menopause is starting. Last time it was 4 nights of NO SLEEP, I'm hoping that my forcing down the food & water I'll shorten it this time, but who knows? There's also that nasty thing called cumulative affects...........For now, I'm going to assume I'm riding out the chemo wave, and it will ebb like it did last time, and I'll get back to living again.

Friday, March 20, 2009

Chemo day - Part deux

I'm fine! After 5 days I felt human again, so I've lived my life, enjoyed myself and stayed away from the computer recreationally. I'm off to chemo #2 in 10 minutes, so I'll be lying low again, I'll post bunches of stuff later...

Wednesday, March 11, 2009

No Cavaties!

That's the big news I'm clinging to today. The boy continues to not have a single cavity in his mouth. And the dentists says it looks like his wisdom teeth will come in with no problem, and no nasty removal. Several of his friends are spending spring break having their wisdom teeth out, THANK YOU TO ALL THAT IS HOLY we don't have to do that right now. It's the little things...

I'm not anemic, I'm severely dehydrated and lost 6 lb's in 5 days. Bad. Me. It's my wakeup call, these reams and reams of care instructions for myself are no joke - Must. Drink. Must Eat. I'm drinking up a storm and researching nutrition. I'm a bit exasperated with myself, but I think I'm just going to cut myself a break, tomorrow is a new day. And I've raised a 15 year old with NO CAVITIES - I'm not so bad.

Want to hear something completely unfair? If you lose weight when you are on chemo, you do not lose fat - you lose tissue. Now that they've put it that way, I'm a believer.


SO I just put a call into my doctors office to report some symptoms. They seem to match those of anemia, low red blood cell count, a "common' side effect of chemotherapy. Yesterday, and especially last night - doing the slightest thing made me just pant, I couldn't catch my breath. And my heart pounded in my chest. Poor Stephen's eyes looked a bit bugged out of his head...

This is so SOON for something like this, and I remember my doctor saying that there's basically nothing to be done about it, until it's so bad you go to the hospital for a transfusion?? Remember the $6600.00 shot I get 24 hours after chemo, the Neulasta? That jacks the white blood cells way up, which allows this chemo regimen every 2 weeks, keeps you healthy - with a better immune system. But the drug they were giving for doing the same thing with red blood cells, to combat the anemia - I think it was Procrit?, there was a stupid commercial for it I remember (I loathe drug commercials on TV, HUGE pet peeve of mine, even prior to this infliction) - they found caused CANCER. No shit, the anemia drug for chemo patients caused cancer. So they don' t give that any more. I've been searching the internets for an anemia diet, because I know this means I need IRON - I know that iron supplements in pill form do not work for chemo anemia, so My best bet is food - no? I can't find one. I find the "miracle cure from the jungles of South America", and crap like that - but no high iron diet. My buddy told me to cook in a cast iron skillet - cook what?

I sound really frustrated, do I not? Well that would be because I AM. I still wake in the night between 3 & 4am - toss and turn and feel icky and hot - now I'm not queasy during the day, but my complete lack of stamina is staggering. I just read that one of the anemia symptoms is insomnia - whoo hoo! How could I have developed anemia in 1 damn day from my 1st treatment??

OK - I'm going to go try and destract myself, in some way that doesn't make my heart pound. The weather is CRAP, that does not help me. I've at least been able to sit outside in the mornings and have my coffee, the flowers are starting to bloom and the birds and squirrels are all spring - fevery. It's been pouring down rain for 4 hours already, I'm just........very frustrated.

Monday, March 9, 2009

Queasy ebbs, and here come the blaaahhhs

I spoke with a wonderful nurse today for Dr. Amy, where has she been? Her name is Linda - if you find yourself at UT Oncology, track this sensible, knowledgable and funny health care worker. She called this morning, "so, I see you called over the weekend feeling crummy?" Yes, is this an actual follow up? Awesome! She went thru my laundry list of meds with me and gave me some terrific explanations of what does what and how, etc. Suggestions for how to tackle the inevitable effects differently next time. #1 - do not take steriods at night! Double up in the AM, don't do PM or you will be like I was, solving the worlds problems in your head at 2:30am, queasy, hot flashing and pondering a fist full of Xanax (I only did a 1/2, don't worry). That's the plan tonight, and I am planning on sleeping people, I will be a better woman tomorrow! But she said to "get ready" for the 7-10 days out blood cell count to plummet, and my butt will be dragging quite far behind me. Good times.

Did I mention our fridge broke this weekend? I shit you not, first chemo weekend and the fridge goes warm - not the freezer, small blessing, but the fridge. We made plans to just replace it today - it's 11 yrs old, we ain't got no spare time whatsoever, I'm pretty home bound and no fridge? YAYAYA, unacceptable. But hub, being the man he is, pulled it out and took the back off - cleaned and cleaned (do that in your own kitchen if you want to be really grossed out - it wasn't dust bunnies, it was dust Yeti's). VOILA, he fixed it! The boy said, "yeah, but dad - I don't trust it now!" Off hub went to get a big thermometer - VOILA - temp is perfection. If this damn thing can last until my treatment's over, then crap out when I can wrap my mind about fridge shopping - that will be a perfect ending. But all weekend there've been 7 or 8 ice chests around the kitchen. NOT ONE COMPLAINT from my hub.......Is he going to explode at some point in the next 15 weeks? It's just too amazing. Almost scary. Awesome scary, but scary.

I was telling my sister in law this story, saying "it's just too much for him" She totally made poo-poo noises on that - "With all we handle day in and day out for HOW MANY YEARS? Your 16 week thingy is NUTHING, get over your guilt and quit it! At the end of the day? It's awesome, your life will change in good ways too, not just early menopause!"

I have an email today from the HS Band "sunshine committee", it says
"Hi, Kelly!
The band family would love to arrange a meal schedule for you and your family during your time of treatments. Please give me a call at your earliest convenience, 214.XXX-XXXX, so we can work out a schedule.

Thanks, and I look forward to hearing from you!"

I'd been told they wanted to do this, they've done it for my neighbor, but it made me cry anyway. The back story on the Band is, we've had some leadership problems with the Director these last couple of years, really negative, awful stuff. But the parents and the kids remain the best group in the school, and as we all know - at this school that's saying alot. They persevere under negativity, strife - This is proof to me good can prevails, in any situation - expecially with a troup of mommy warriers getting it done.

Sunday, March 8, 2009

It ain't easy, being queasy

Yep, those "flu like" symptoms decended with a vengence mid day Saturday, eating and drinking became almost impossible, feel like overall crap. I haven't thrown up - thank God! - but I've come close. Sleep wasn't good last night, 3:30am - on it was touch and go. I called the on call doc this AM (sunday) he was ever so kind, Stephen picked up some Zofran for me just now (another anti-nausea for chemo drug) I'll have to decide if to take it. Doc talked me into taking my steriod pill this AM, which I'm sposed to take 2x day for 3 days after chemo - he said it would help. I think it did, I'm a bit better than I was 2 hours ago. I'm sitting up on the couch typing! Woot! But yeah, general feeling of over-all crappiness prevails. Stephen also picked up Pedialite pops to freeze for me and some protien drink stuff, gotta not get all anorexic or I'll land in the hospital - NO on that option!

My marvelous blog buddy I met with the same tumor is my touchstone this weekend, she's finished her 4 A/C treatments every two weeks and is moving on to the next 4 rounds of Taxol - she's a lifeline - HURRAY for the internets, I've connected with some amazing people.

If you don't get a response from me via email/text/phone check in with Stephen if you're worried. But I'm ok, hoping this will pass in a day or two.

Friday, March 6, 2009

One down, 7 to go

First time went without a hitch. The port is a ROCKSTAR, when I get there the girl in the lab puts a special needle in it and tapes it down, then they just attach whatever to it to do whatever they need to do. I did not feel a thing when she put the needle in, couldn't feel it at all in there. You know when you have an IV in your arm or hand, you can constantly feel it, if you move your arm it can pull and hurt - it's just awkward and icky. I have a lump and a bruise on the back of my hand from the IV on Wed. for my port implant surgery, it's really sore. So the port needle is in and taped down, with a tube coming out. She attached a syringe the tube and drew blood - couldn't feel it. When I got to the chemo room, she attached an IV tube to it - couldn't feel it. You know when they start putting fluids into your IV it gets cold, your whole arm or whole body can get cold? Didn't feel it, what goes into the port goes directly into my Vena Cava - big vein in my chest - can't feel it. So yeah, very pleased about that. Had a long talk with my oncologist - we've settled on calling her Dr. Amy (Harker-Murray is a mouthful, and she's 10 years younger than me!) She was once again very forceful in saying she's going to control my side effects. If I start getting really nauseous or throwing up and the meds don't stop it - I'm to call them, 24 hrs a day - and they'll order something else, immediately. Fever over 101.5 - call immediatly. I need to Google and find the nearest 24 hour pharmacy - that I hopefully won't use!

They started with just saline, then a small bag of anti-nausea meds, Aloxi, that lasts 72 hours and is supposed to be really good, then a bag of sterioids that help nausea, then a nip of Adivan which is anti anxiety, then came the bag of scary bright red stuff - the Adriamycin. I was wrong on the infusion - if you have a port it just drips. That only took about 30 minutes. I'm drinking TONS of water to flush this stuff out of me, hence I'm hitting the restroom a lot, too. I was half way thru the bag of red stuff and needed to go. Stephen helped me roll the IV to the bathroom, and I was already urinating pink - thank goodness they had warned me! So this stuff is already passing thru me in 15 minutes. The next time I went about an hour later it was RED, if I hadn't been warned that would be scary. After the red, she started the Cytoxan, that took a little over an hour & 1/2 maybe? And we were done. Wow. I did not cry, I didn't even have my anxiety shoot up too much. I think that I had so much anxiety last week, up thru Wed. when I had my surgery for the port - I got a lot of it out of my system I think.

The most common time for the nausea, general ill feeling, exhaustion, etc. is 2-3 days or 5-6 days later I'm told. Or it could be tonight - everybody is different. I'm tired, but nothing else, yet. I will feel worse, that's a given - but when? I feel like I'm waiting for something to fall out of the sky and land on me when I least expect it. Will it be a large or small something? Will it be gross or just annoying, irritating or damn near unbearable? Ugh, I will do my best to distract myself as soon as I hit "publish post".

I have a cancer-buddy in Northern California that I found on this blog site, she had the same triple negative tumor I did, she's doing the same chemo plan, she's thru her first 4 treatments - all of the A/C - and she is a font of information, how incredible I stumbled on that right at the moment it means the most? She's lovely, and generous - has emailed me her daily notebook she kept each day of her chemo, so I can see what she did/took daily and how she felt. I'm just..........grateful, there's that word again.

The texts and emails this morning were awesome, how could I be upset when I had all that to distract me? Too wonderful for words, here I am chock full o chemo, and I'm still feeling grateful - dat's good! All bets are off moment to moment tho, I fully know this can change on a dime. I told Stephen we needed barf bags for the car, and a bucket to keep near me in the house. My aunt told me that when she threw up it happened FAST. I'm so determined to be prepared it's starting to get pretty wacky, I'm going to take some compazine and try and freaking chill now.

Thank you Deb, Deb, Deb (there are 3), Ging, Sherry, Claudia, Barbara, Carol, Brit, Bret and my Jerry - Love you big bro, you are dear to me. And the man - Stephen - he is the rock. You are the team that holds me up.

And we're off......

First chemo in a couple hours. My friends Ging & Debbie took me to the wig store yesterday. Because of them it was a fun time - it could have been awful because - wigs ARE awful - but it wasn't because they had a blast. I got one wig, and I kind of hate it, but it's some hair for my head when I'll have none of my own I guess. And she showed us how to cover your head in a scarf, that was useful. LOVE YOU GUYS for doing that yesterday, that was pure love you showed me, I'll never forget it!

And Jo - last night you giving me all that time on the phone, all those chemo tips - when you had just had your last chemo the day before? You are generous beyond belief. I'm wrapping myself up in all this support - my battle armor - and marching off to kill some cancer.

Wednesday, March 4, 2009

One more thing behind me

I have a port. Surgery went smoothly, no problems, we were out of there sooner than expected. It feels like I got punched really hard right under my collar bone, like I have a big swollen bruise. But compared to the last surgery? It was nuthin. It's titanium they say (It's all under the skin, so I never saw it), I think of titanium as really, really strong - so I tell myself I got a strong, sturdy port to handle the chemo, one less thing my body parts - like veins - have to deal with.

And about that chemo... here's the drill. I start Friday. If all goes well, I'll have 8 treatments every two weeks - total time 16 weeks. Each time I show up at the lab for a blood draw (they can draw from my new port!), after this first treatment that becomes more important because they want to check your red & white blood cell counts to make sure you are strong enough for the chemo. Then I see the my doc (Amy Harker-Murray) all that takes an hour, then I report to the "infusion therapy" area. I'm told you get your own room, with recliner, TV, DVD's, etc. They start an IV (In my new port!) and start you with a combo of steroids, benedryl and some anti-nausea meds. Then the hard stuff. The first 4 treatments will be what's called AC - Adriamycin & Cytoxan. The most dreaded drug of the bunch is the Adriamycin aka The Red Devil, it's a strong chemo drug used in conjunction with other chemo drugs for a variety of cancer types. I like this description of what it does "it first disrupts, then destroys the growth of cancer cells." Works for me. It's called the Red Devil because it's bright red, it's given in an infusion, not a drip - meaning the nurse has a big fat syringe type thing that she infuses into the...IV line or right into the port, I'm not sure. It takes her about 15 minutes. Also called the Devil because of the side effects: Decreased white blood cell count with increased risk of infection , Decreased platelet count with increased risk of bleeding , Loss of appetite, Darkening of nail beds and skin creases of hands, Hair loss - Alopecia, Nausea and vomiting, Mouth sores. Yeah, not a fun one. The 2nd drug Cytoxan they do in an IV drip, and I think it takes 3-4 hours. It has the same chunk of side effects, with possible stomach pain, diahrea, and lethargy added in.

After each Friday chemo, I go back 24 hours later (Saturday) and get a shot of Neulasta. This drug stimulates bone marrow to produce white blood cells, allowing them to do higher doses of the chemotherapy and with a shorter time between treatments (Every 2 weeks instead of every 3) and to keep your immune system up more, so you aren't at such a great risk to catch EVERYTHING and anything that's around. The main side effect of that can be bone pain (from those bones frantically producing white blood cells, as the chemo is killing them....)My final four rounds will be of the chemo drug Taxol, here's the skinny on it: " Taxol is called a mitotic inhibitor because its interferes with cells during mitosis (cell division). Similar side effects as above, but also add in: pain in the joints of the arms or legs lasting 2–3 days, tingling in the hands or toes.

Not everyone gets ALL of the side effects, some they have other drugs to try and control. My Onc. is very determined to find the right anti-nausea meds for me, and I've been reading up on it as well. My docs and I are going to do our best to keep the puking and nausea-misery to a minimum. I will be tired. The sick and exhausted is my biggest worry/fear - that is the big unknown for me, and what causes my pre-chemo anxiety for sure. I spoke with Dr. Harker-Murray this morning (there was a mix-up, freak out on my heart scan results - she called me - once again herself to straighten it out) when I talk to her and she assures me of her commitment to keep me as well as medically possible, it calms me down.

I will lose my hair. All of it, most likely. I'm really fine with losing all the hair from my nose down, but the whole head, eyelashes, eyebrows thing is freaky. I have read some women kept their eyelashes, or their brows thinned but didn't disappear. But I'm assuming I'll be as slick as a new born baby - and any thing like an eyebrow that I get to keep will be a bonus! I'm supposed to go wig shopping tomorrow with my friend Debbie, can't wrap my head around that. I have LOTS of hair, it's very thick. I've worn it long or long-ish since I was 4 years old. How do you try a wig on with all this hair on my head? We'll figure that out, too. I was on a website that sold stuff for women dealing with all the breast cancer problems, they were having a sale on hats and stuff - I ordered a couple of hats (they cover your whole head) and scarves and a turban - just to be prepared! SOMEBODY needs to come show me how to tie scarves, I am so the anti-girly. The hub has said several times lately, that if it was him he'd just go ahead and shave his head now . I'm just not up for that right now. From what I've read it usually starts around 2 weeks after your first treatment, and when it starts going it goes with a vengence. We'll see how I feel next week. But I will end up shaving it, I'm not going to leave this thick head of hair all over my house - ew. I wanted to get it all cut off and give it to locks of love, but was told you can't have hair dye on it. Makes NO SENSE to me, if I didn't use dye I'd be donating a grey wig - and these wigs are given to kids, what kid wants a grey wig? I've also been told that hair is the thing birds most love to make nests out of . It will be full blown early spring when my hair comes out - so maybe I'll donate it to the birds. I can see my neighbors reading this and freaking right now - she's going to let her hair blow around the neiborhood? double ew! I don't think I'm up for a big group ritualistic head shaving either. I don't know, I'm going to take this one as it comes. If anyone sees a hat/cap/scarf that will well cover a bald head, grab it for me! I thought - I'm glad my pool is private, at least I can go paddle around this summer in all my bald headed, scarred up glory without feeling self concious about it. With heavy duty sunscreen tho!

I have had moments of serious anxiety over the pending chemo over the last 10 days or more. It's like a roller coaster - in my head it's a pink roller coaster, of course, up down up down. Right now, in this moment - I'm better than I have been in days. My son is well again, he's back on his preventative medicine and it seems to be working, and it just seems like he's come out the other side of that dark, sad place he was in. That was rough - I tell ya. It seemed he didn't keep down any food at all for over a week, he's visably skinnier, but that ended last Thursday or so. Tonight he came home from a concert at SMU, we were standing in the kitchen, and I swear I was looking up at him more than before - he grew again! Obviously this long episode of his illness didn't stop that! He is the sweetest, sweetest son - he tells me he loves me all the time, every time he gets out of the car at school, every night before bed. He's almost 16, and I know that's not always the case at this age, for I am so grateful for my sweet, smart boy. And I have a port! A titanium port, it will protect my arm from all this - so I'm grateful for that. And my patient, steady as a rock husband. It's midnight, he's been asleep for 2 hours, I could go shake him right now and say "honey, we're out of milk, my stomach's burning and I really, really want milk........." He would stumble right out of bed, and go to the 7-11 and get me milk. But I"m trying very hard to not have wacko requests like that, it's the fact that I know he would that counts. And the fact that I know he'll be there for me through all of this, every minute I need him . These are the thoughts that slow down my pink roller coaster, helps put my mind in a calmer, safer place.

10 to 21 days after the final chemo I start radiation.. My radiation oncologist is Dr. Ann Spangler - she was awesome. 5 days a week, for 6 1/2 weeks. Tired is the only real side effect from that, I believe. They have a slick radiation set up for their patients, I'll talke about that later, it seems years away at this point, with the endless abyss of chemo before it. Thank goodness I don't live like a 2 hour drive to radiation, how much would that suck? Whew, my little jaunt from the PC to such a great cancer center - another thing I'm grateful for. I remind myself of that whenever I'm schlogging over there grumbling, for the umpteenth time in 3 weeks - it's not far, be grateful!

So it sounds like my mood tonight, this close to chemo - is grateful, and calmer than I have been. As awful as all that chemo crap sounds, it really, really is a concoction and a schedule that suits my tumor type, and has proven to really really kill it and kill it good. I'm grateful for that, too!

Tuesday, March 3, 2009

Holla atcha boy!

I wanted to give a shout out to my "cancer buddies", the ladies and gentlemen that are in treatment, post treatment, or were significant other's to those in treatment. Some I knew, many I've only recently met/spoken to. Your words of wisdom, and voice of experience has meant the world to me. So hey to: Aunt Pat, Roseanne, Carol, Heather, Stephanie, Deborah, Jo and Doug - you are all so very generous with your time and kindness - a million thanks, you guys are just the best at gently luring me from the edge......

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.