Thursday, April 23, 2009


Grey's Anatomy has to give one of their lead players cancer NOW? And have her go thru surgery? And freaking chemo? This is not entertainment, people. Thank God neither my husband nor my son watch this show. Seriously.

Monday, April 20, 2009

Round 4 A/C - The FINAL ROUND!

Whew, I haven't written since that last whiney, bitchy post about how awful Round #3 was. I was dreading this 4th and final round so much I couldn't force myself to post - nobody needs to hear more of THAT. It sucks - blahblahblah- feel like shit - blahblahblah - waaaa - blahblahblah. Blech.I went back to work after round 3 on Friday - and I shouldn't have, wasn't up to it. By that night I'm sitting in bed with tears just rolling down my cheeks. MY POOR HUSBAND.

On that Saturday - Easter Eve - my family came over to visit, my sister in law and I went to the cheap shoe store and bought cheap sandals and I went a little nuts in the clothes kiosk in there run by this Indian couple. I got two sundresses, a solid black sequin scarf for my nekkid head, and 3 beautiful, exotic looking pairs of dangly earrings - 2 with big rings to go with them. FUN stuff! But most of all it was wonderful to run around with her again - even feeling puny like I was. She was thoughtful of my weaknesses, carrying some of my stuff - making me sit down while she stood in line for us. Weird being sickly, but lovely to have peeps that love you and take care of you without a bunch o fuss. We all went out and had a lovely dinner - no cooking - at Desperado's. When I'm coming off the yukkiness of chemo, Mexican food is DAMN GOOD - it seems to cut thru my weird metallic taste, screwed up saliva thing, and I can actually taste the food. YUM. Stephen has become friends with the owners here - The Levy's - they are lovely people. They sent over their signature dessert - Deep Fried Latte - which they won best new food at the State Fair of Texas a few years ago with - and I loved it! I could see it being my new craving, weird as it sounds. It kinda has a sopapilla bottom, with a Mocha ice cream - anyhoo - stop by and give it a whirl!

Easter was at my Father in law's house - a big crowd to celebrate Easter, & my boy & his grandfather's birthdays. I could tell that morning I was tired, so I took a trusty Ativan and lay down. 2 hour nap later, I was ready to get up and go. I wore my new sparkly sequin scarf - I pretended I had sequin hair - it was festive, I think. I just am NOT A FAN of the wig. It's tight, it's hot - and it feels like......a wig. I know the scarves & hats make me look all patient-y, but you know - I don't have hair, so there it is. I never go out with my bald head (shudder the thought) but mostly I'm living in scarves - usually with the dangly fun earrings to up the female factor of it all. I still have eyelashes & eyebrows - I'd say they've thinned by 1/2 - but I started with way more than normal so they don't look too patient-y yet. From there, I've lost most of the rest of the body hair, except my forearms - I still have a little less than 1/2 of that. I don't miss the body hair! If I could get my head hair, eyebrows & lashes back - the rest could stay gone, thank you very much. Easter dinner was lovely, seeing everyone was awesome, and I'd like to send a shout-out to Melissa for all her hard work and delicious food. ON HER BIRTHDAY. Big bitch slap to my father in law for not letting ANY of us know this woman put this shindig on, on HER BIRTHDAY, and none of us knew. Bad boyfriend award to him. HAPPY BIRTHDAY Melissa - we owe you a birthday party - it may be quite late, but we'll make it up to you.

The week after Easter I was a bit better each day, I worked Mon-Thurs. I knew I never got back up to what I as able to get back up to after chemo's 1 & 2. Just didn't happen. Leaning on poor Stephen more than ever - I just have very low reserves of energy, and I still had waves of fatigue more than ever. He still is taking Kellen 90% of the time - EVERYWHERE, including to and from school. He's doing 100% of grocery shopping, dish washing & kitchen cleaning, 98% of food getting (cooking or fetching to-go). It's starting to wear him down - I can see it, I can hear it.....and I feel helpless to help. He still is working TONS of hours, so he's just frayed around the edges, and quite tired. I have tried to maintain the laundry, but that's about it for long-term responsibilities - other than doing my job as much as I can. He's the hero here, if you see him tell him he is amazing and awe inspiring - because he is. I'll be spending a lifetime trying to make this up to him....

But I do know the way I've felt is REAL now. Friday my bloodwork shows I'm now officially anemic. This was expected, and about the time she expected it to show up. The neulasta shots I receive 24 hrs after each chemo are working great, tho - WBC still normal, which is amazing. But the anemia - yuck. Not much to be done about it either, I'll keep up my eating and drinking - maybe add some more iron in food, but they say Iron tablets or vitamins just don't help. They used to have a drug like the Neulasta, except it was for the Red Blood cells - i think it was Procrit. Turns out it gave the chemo patients CANCER - so no more of that. She said something about below 12.2 is considered anemic, I'm at 11 - if you get to 8 you get a blood transfusion - YIKES I DONT WANT THAT. So I'll continue to try and be the best lil chemo patient I can be.

I'd like to give a shout out to DR. AMY HARKER-MURRAY! Still the bestus oncologist I know, I'm grateful to be her patient. She told me Friday that she'd met a new patient the day before that was there because they talked to me a while back? I believe it's a lady that lives in Denton, who was unhappy with her care (for very good reasons) and headed to MD Anderson for another opinion? I suggested she try out Dr. Amy, and I think she did. Holler back at me woman and let me know what's up! And she told the doc about my blog :) You are welcome here Doc A - I promise only my skewed view of truth - how I see it!

My precious boy is at his first behind the wheel driving lesson at driving school this Sunday morning! HOLY CRAP! He got his permit - the sidewalks of the PC are no longer safe! He's a very, very good boy - but DAMN ITS SCARY, ISN"T IT?

I've felt pretty darn crappy since my last A/C Friday - as expected. As per usual, I'm best in the AM, and I fade all day - evenings are the worst. Last night was THE WORST, worthy of those capital letters. I went to bed whimpering, even crying a bit. Stephen tucked me in all worried, help me gather up my drugs for over night, water, ice pack - dog & cat. I slept fitfully, waking with massive hot flashes and nausea several times. HOPING that was my last worst A/C night?'s to hoping.

I've been trolling the net looking for a beach house in Galveston - using my old, rusty travel agent skills. Shooting off tons of emails to any house that looks like it might fit the bill, or even just catches my eye. I heard back from this one guy saying - can you do such and such date BEFORE those dates? I responded with my story - cancer, chemo, doctors, break before radiation - didn't even go back to see which house it was when I did. He responded to me with the SWEETEST email back - and offering me A DEAL. The docs & I had negotiated me traveling the week departing sometime around 7/10-13. This guy offers me 7/6-12 with a discount, and waives his NO PET policy so we can bring out clingy, needy dog! People are so incredibly I am feeling like I'm trudging thru the bowels of hell half the time, but people just pop up and do the NICEST THINGS - it likes brings rays of sunshine and goodness thru all this awfulness. SO - we get a vacation. At an AMAZING beachfront home, right in the heart of Galveston on a beautiful spec of ocean. IF YOU WANT TO RENT A LUXURY BEACH HOUSE you have to rent this one from this lovely man! Contact me - I'll hook you up. :) and if you find yourself down Galveston way 7/6-12 look us up! I'll be the one lying on the sand with a big sun hat and a faux Pina Colada, bobbing in the sea and soaking it all up. Storing up energy for the last and final round of cancer killing '09 - radiation, set to start for 6 1/2 weeks upon my return. All docs & bosses approved the time, so it' looks like we're a go on the vaca - SOMETHING TO LIVE FOR!

Wanna see some pretty? Check out this short You Tube video of my BFF and amazing artist friends work - set to music You like? Go to her website and BUY SOME ART! Times are tough, we can all use some pretty :) Wanna see some more pretty? I've become quite close via the interwebs with a wonderful woman who had the same tumor type has I, and is forging ahead with my same treatment, 3 treatments ahead of me. I cannot tell you how much help and support she's been. And she's an artist too - check out her pretty (photo's) here Spring is finally here, and I just can't get enough of ANYTHING pretty. Speaking of - Thanks to Judy & Barbara for the beautiful orchids! I hope I can keep them alive for the summer - they make me so happy.

So my mantra, constant - NO MORE A/C. You did it. You let 'em fill you up with the worstest of poisons and you're popping out the other side. There's one more poison to do - Taxol - but it's just not AS BAD. I am starting to see light - a little peephole - into the home stretch. This will be behind us, my family and I - and life shall return.

Friday, April 10, 2009

Lousy, crappy, crummy, rotten, terrible, sick

The most common question I get is "how are you feeling?" It's an obvious question to ask someone that's been receiving dense-dose, very strong chemo therapy every other week for 5 weeks and is obviously bald. The first 2 rounds I bounced back after a week - relatively - and had a week that I could carry on my life and do OK. I worked, I drove, I went out to dinner. I've hit the point in the A/C (Adriamicin & Cytoxin) treatments where I don't think I get the bounceback. I had my last (3rd) treatment a week ago today - and mornings are when I usually feel my best and then I fade during the day and into the evenings - and I'm sitting here feeling just rotten. Chemo-sick is unique, there's nothing I can say to someone that hasn't experienced it to convey or compare how I feel to anything in normal life. Queasy. Nauseous. Weak. BLAH. If you woke up in the morning and found yourself feeling the way I feel, and someone asked you how you were feeling, I believe your response would be something like, "I really feel like shit. I think I need to see a doctor." I'm trudging along, life goes on around me, but I feel more and more detached, more stuck in the miserable rut of rotteness that is my life right now. I rest - A LOT. It's not like I really have a choice, I mostly just feel so bad that moving from room to room in my house is a chore. Eating is a chore, drinking water is an unpleasant, difficult chore. Taking a shower is exhausting. Brushing my teeth is an unpleasant chore (raw, peeling gums, sores on the corners of my mouth that feel like big paper cuts that will not heal, tons of bleeding). I haven't left the house in a week.

It's Good Friday, my child is off school and blissfully sleeping in - that makes me happy. We have plans on both Saturday and Sunday evenings this holiday weekend. My entire family is coming over Saturday night - the 1st time we've all gotten together in a year. I assumed I'd be over this round by the weekend and all would be fine - now I know it just ain't so. I'm not canceling, I know they'll understand if I just get in a comfy spot and sit with an afgan on my lap and don't move much - like an elderly, ailing great auntie or something. My sister in law was saying she'd make a ham, some casseroles, etc. - normal stuff for an Easter family get together. All I could think was NO! No cooking or big meal serving - I'll be tempted to help, I'll be no help at all, I'll feel guilty - UGH. Pizza - let's order pizza & wings and eat off paper plates and call it done - please!

Sunday is my husbands family Easter dinner & joint birthday celebration for my boy and his grandfather, who share a birthday. My beautiful baby turned 16 yesterday! Unbelievable. His sort-of, on again off again girlfriend type person took him to the high school fashion show last night. He got semi-dressed up, and looked so incredibly handsome & happy. He got incredibly sick my first two chemo's, his illness kicked in and the episodes lasted for days & days. He's lost so much weight, he's SKINNY and it kills me. But - this time he did not get sick. We'd been having him stay with friends for a few days each time, this time he came home Friday night and didn't spend a night away - and he did ok! That was a huge relief. From being so sick the month prior he was buried in make-up work - which stresses him out ,which usually makes him sick - it's a vicious cycle. But he was methodically working his way thru it, doing quite well. Except for his horrible ENGLISH TEACHER. This woman is just awful, heartless, sarcastic, difficult - just a freaking nightmare. His other teachers have been kind & understanding, they appreciate that Kellen is a good boy, he wants to do well, they respect how sick he gets and his limitations when he first gets back from being very sick - they work with him and help him get the work done and be prepared when he does the make-up tests. Makes sense, no? This woman is THE WORST, she's the opposite of all of these things, it's like she feels incredibly put out by it all and she wants to punish him. COME ON. You've got a sick kid to begin with - and now he has to deal with his mom doing what I'm doing? And YOU are feeling put out? What a miserable excuse for a human being this woman is.


Blogger note from Kelly: I was so in a bad place yesterday........It bothered me last night that I knew I'd written such a negative post, exposed my stressful/nasty school encounter I had this week. Soooooooo. Decided I'd feel better if I came and deleted it - and I just did. I NEED AN ATTITUDE ADJUSTMENT.....I'm mulling that over and I'll let y'all know if I figure out how to de-funkify myself. Last nite I just lay in bed feeling miserable. Real Time with Bill Maher came on HBO, and his guest was the glorious Gore Vidal. He had me laughing out loud! I think I'll download some Vidal to my Kindle and see if he perks me up. /// End of Edit

The thing I find is helping me the most with dealing with the endless feeling awful is to think of it ending. I have my final treatment in a week, God knows how awful I feel after getting another jolt of these particular poisons - but then that's it. NO MORE. Never take the Red Devil Adriamicin again! I work thru this one more time, wait it out as it works it's way thru then out of my system - and when I finally start feeling better in a few weeks - I'll keep feeling better, they won't hit me again! THATS the only good thing I can focus on, it's the prize I keep my eye on. Until then - I'm sorry that I have nothing good to say when you ask me how I'm feeling right now - it just is what it is, but I do know it will end. I also know the Taxol will bring on a new host of problems, I'll have complaints about those as well - but then I will remind myself of how I feel RIGHT NOW, and it will help me get thru those, I just know it. "At least I don't feel that awful A/C chemo-y feeling! Thank God for that!" I cannot wait for the day.

Monday, April 6, 2009

dang dang dang - HELP with the blog thing please!

Can we make it where it emails me if I get a comment?? Now that I miraculously can receive comments, I have to go search them out! Can't I ask this thing to email me with comments I receive?? Lawyermom - help?? I may need my blog tutorial soon :(

Sunday, April 5, 2009

Only 1 mo A/C - then the 4 Taxol....

I had my 3rd A/C treatment on Friday - one more to go. All my bloodwork shows I'm doing very well, Dr. Amy was very pleased. She wasn't happy that I'd had such horrible nights again last time, so she added Ativan (aka Lorazapam) to the drug regimen. So far so good on that, when I start feeling super crappy I pop one of these tiny pills and I SLEEP. 2-3 hour nap sound asleep by day. Last night was the dreaded Saturday night post A/C - the previous 2 Saturday pm's have been sheer HELL. I took the Ativan with the Compazine at 11pm, and slept until 4:30am - period. Took the combo again - slept until 7:45am. WOW. Woke with a headache, so capped it off with pain pill, then Zofran - and I'm off and running. I'll lay off the Ativan until/if I start feeling really bad again this afternoon, then I'll take it and nap again. Stephen keeps putting food in my hands every few hours - that I can't imagine eating prior, but I do and that helps as well. Eating small meals several times a day - forcing down water, adding Crystal light or instant tea mix to the water bottle in between up the liquid intake. And a Milkshake once a day caps it off. WAY better than first go round when I starved myself and got dehydrated, even better than last time when I forced myself - turns out I need Stephen to keep track and actually put food in my hands. He just walked in and put a breakfast bagel sandwich in my hands - and I eat. NO WAY would I have eaten on my own this A.M. I said YES to the HS Band Sunshine committee to bringing meals a couple days after every chemo - will be a huge help to us all, especially my husband who takes on ALL the responsibiltiy 'round here when I am chemo-y. He's discovered he is down with doing dishes, he told the family therapist yesterday he think's he'll keep up being the go-to dish guy. That's pretty thrilling. He'll leave the laundry to me - as I am laundry anal-retentive. Kellen piped up and said HE'D do laundry with me - we'll see about follow-thru on that. Right now he is makeup makeup makeup schoolwork- as he's been very, very sick. He's lost so much weight, it's very worrysome. I get sick - he get's sick. We are really hoping he'll make it thru this time without joining in my sicky-ness. So far - well, let's just knock on wood and not say it outloud.

I want to recoup quickly, Thursday is Kellen's 16th birthday (and his grandpa's as well) He has good Friday off from school, we have the Moore family Easter/birthday celebration Saturday - and supposedly MY family wants to get together Easter Sunday. That would be a first in a YEAR, so here's to hoping. I hear my brother is a bit freaked by my baldness. If you are out there big bro - NOBODY see's my baldness but Stephen, I'm getting very good with the scarves, hats and I've even worn my wig one night. It looks like - hair, not bad. But DAMN it's uncomfortable! Hot, itchy and very tight! Tight is good, tho - wig flying off would be very bad. I wear dangly earrings almost always when I go out. THANK YOU Debbie for the new danglies! I wasn't a big dangly wearer, because my long thick hair hid them. Now I find I put on a bit of makeup more, with the earrings - to take away from the manly looks of the no-hair, doncha know. And now that we're getting into much more sun happening, I'm going to have to get used to wearing some hats - I'm sun sensitive from the chemo. I ordered a couple, one is a brim that fits over the scarves - pretty cool actually.

My obsession last week was wanting to book a vacation between my chemo and radiation this summer. I started with Dr. Amy - Oncologist. My final chemo is scheduled for 6/12. I emailed her - I figure I need 1 week to recoup b/4 I travel - so If I wait 3 weeks to travel, that gives me 2 weeks leeway for delays in treatment (delays due to bad bloodwork is common). Her answer was - you WILL BE NEUTROPENIC, so I don't want you to travel with less than 2 weeks wait. That means my white blood cells will be low, I'll be immuno-suppressed, etc. I'll also prolly be anemic to a degree. I knew all that, but it SUCKS to hear it from her. So anyhoo, she said two weeks to recoup, two weeks leeway - wait 4 weeks and I'll sign off on it. Here's the issue there - Radiation Onc said she wanted to start radiation 21-28 days after chemo - if I wait 4 weeks, then travel one week - that's 5 weeks - Is that OK with Rad Onc?? She's on spring break - don't get an answer until next week. We NEED A BREAK, and we need something to look foward to. And I want to see the ocean really, really bad. I like the idea of supporting the Texas Coastal communities that were so devasted by the hurricane, and have gotten so little government support. They are starting to open up for bookings - so now is the time to get one we like nailed down! The hospital in Galveston just re-opened as well, in case I were to have a small problem - and MD Anderson isn't far, if I were to have a BIG problem.

My leg hair is mostly gone, no arm pit hair which is awesome, very bald on top but I still have eyebrows & eyelashes, but they've thinned a little bit. No upper arm hair, but still have lower, but thinner. Not much down there, which is fine - basically, all the hair from my nose down could leave forever and I'd be fine with that - if I could keep or get back my eyes and head. The A/C is hell on the mouth - raw gums, cracked tongue. Last time I got sores at the corners of my mouth that felt like paper cuts. I got new special toothpaste and mouth wash that helped, right this minute the sores part in and out of mouth are better, but I know that they come back about 4-5 days after chemo. Taste is YUCK for at least 5 days, then just weird until the next one. The sandwich I just ate tasted like cardboard and other packing materials. Water tastes very metallic. Salt & pepper on everything - once I get over the queasy, like a week out Mexican is very good. I've been eating rolaids like crazy. Constipation is a very bad thing - from annoying to painful. I NEVER have this problem in real life, so I think I'm an even bigger baby because of it - but it sucks! I've just started sticking with the old fashioned Milk O Magnesia, all the fancier, expensive pills don't seem to do anything. I must say I'm ever so much more grateful that we are the "regular" family, all of us like clockwork - except for me now in my chemo-y state.

I just don't know how I'm going to be able to thank everyone for everything they are doing for us. I continue to find treats on my front porch - now that it's spring I've some lovely little potted flowers, lucky shamrocks, lucky bamboo. Earrings, snacks, cards that CRACK me up, I got a gift certificate from a client wanting to "pick me up with retail therapy". Food gift cards as well - all so overwhelmingly nice. And the dangly earrings - so awesome! How can we stay "down" when we are constantly getting treats and hilarious cards? But really it is the thoughts and the love behind it all, it's just too awesome.

My most smart things have been getting the Kindle for reading - LOVE THE KINDLE - and the sewing, my blankie is coming along so nicely. And thank GOD for the DVR. I'm diligent about checking the schedule and recording anything that might remotely interest us, for these post-chemo days having something to watch is manditory - and I can crochet while I watch, making me feel a little less completely worthless. It's all about fighting the tedium! Overcoming the blaaaaahs, distracting from the feeling horribleness. I succeed more than I fail, I think. When I feel the worst sometimes I cry, but not too much. Last night I stood up and just cried, Stephen ran over to hug me. I yelled "Don't get my tears on you! They're toxic!" No idea if that's true, but it sure felt like it.