Friday, January 28, 2011

A Glimmer... I Guess

Things in my head (and evidently in my body) are shitty right now.
It's hard to even THINK the word hope when it seems I've fallen so many times that I shouldn't even try to get back up. How much bad news is allowed? How long can one hold out for the good news that never seems to come? It's like a bad dream where I'm running down a hall toward that good news but the hallway gets longer and longer the more I run. Even though I'm exhausted, I don't like the idea of going to sleep because I wonder if I'll wake up. More fatalist thoughts. "This is my last Winter." "Vera will not remember me." "Iris might remember me." "The girls will call someone else 'Mommy.'"
My aunt was diagnosed with breast cancer when her youngest daughter was 5-6 months old. Vera was 5 months old when I was diagnosed. My aunt died 2 years later. I am coming up on 2 years and shit for me just went downhill pretty fast.

There are 'options' I guess.
*Surgery: This would almost definitely end with me having a colostomy bag. At this point I don't give a damn. It's such a mess in my pelvis that you can't even tell where my uterus and ovaries are- there's too much tumor. Nice. They can't see my ureters either. It's just a matter of time before the tumors choke off my ureturs and bowels.
*Radiation: MIGHT be a possibility but the tumors are way bigger than what they do radiation on. A Radiation Oncology Doc is looking at my scans now to see what's possible.

I left a message for one of the docs in Dallas to call me. He called yesterday afternoon. He said the vaccine should keep the tumor from growing (if not shrink it). From how he talked, he seemed to have faith that the vaccine would work. I felt only slightly better.
On this clinical trial I can't do any chemotherapy- which is fine because none of them WORK. But I can have surgery and/or radiation. (Little triumphs)
I only have 4 days before I leave for Dallas. I feel like a ticking timebomb.

I'm drinking only water and occasionally milk and reading "Crazy, Sexy Diet" Thanks to Cheryl- I will be incorporating green smoothies into my life soon. Vegetarian may be next.

Whatever it takes.

I love you Iris and Vera.

Wednesday, January 26, 2011

Bad News

Met with the nurse practitioner today and went over my CT scans.
Compared to last month's CT- there is a tumor in my pelvis that has practically doubled in size. (Now about as big as a grapefruit.). That's the discomfort I've been feeling and then there is new tumor on my left side. That one isn't small either.
Please pray for me. I don't think I've said that in so many words. If you don't pray, please send good vibes, thoughts, whatever it is you do in my direction.
I can't leave my girls without a Mommy.

Tuesday, January 25, 2011

At Random

I've been lazy. Or sick. I really can't tell the difference anymore. I guess you just get so used to being sick that if you're just plain tired and could use a brisk walk to get the blood flowing and you'd be fine- you can't really tell the two apart.
I have a cold- I know that much. But Sunday I spent the entire day in bed. For real. I got up to make lunch for Vera and myself (Iris was at Grams' house). But I couldn't muster up any energy to do anything. About 6pm I got off my duff and cleaned Iris' room, yay me. Then promptly went back to bed. I think Vera has felt under the weather too so she was perfectly happy to veg out in bed with me. You know I was tired when I didn't care that we were watching 3 hours of Dora. Yeah- I wasn't kidding when I said I didn't get out of bed.
I wasn't feeling hot last week with my abdomen getting hard (and no, that's not a 6 pack that I wished for Christmas) and just feeling like someone is sitting on my stomach all the time. I called the Onc and scheduled a CT scan. I had that done yesterday... and I will NEVER acquire a tase for the barium smoothies. Barf. Tomorrow I meet with my Onc or the Nurse Pract. to discuss the CT results and compare them to December's CTs. I'm not-so-secretly nervous. Something's definitely changed, but I'm crossing fingers for it to be just a bunch of scar tissue. It doesn't FEEL like it though. When I push on the hard areas, I can feel it deeper, JUST like it felt before diagnosis.
This vaccine HAS TO WORK.

Well, backpedal to last week... I got a late text from my husband's aunt. Carla used to live nearby, but moved to Tennessee last summer when her husband got a job there. I dig her- she was fun to be around and I wish I would have spent more time with her when she was local. She texted me last Monday night to call her when I got a chance.
When I called her I was thankful that I was sitting down (as I usually am). Since moving to Tennessee she found a church that she loves- Crossroads Community Church of the Nazarene- and had put me on the prayer list. I'm not sure how long she's been going there but it's not been a year yet- that's for sure. Anyway, she wanted to tell me that the church board had voted that night to pay for one of my vaccines. That's $2,000. That's not chump change- not to a church. I cried. I had a hard time sleeping. Again- what do you say to that? Other than thank you? It's so overwhelming.
I am truly grateful for any help I get.
I can't afford these vaccines on my own. I will probably still have to take out a loan to cover the costs. But help is coming in all forms- in those mysterious ways that God works. A nurse/listener has offered a voucher for an Airlines to get to Dallas and back. Again, it's a weird feeling to accept the help and I hope I never get used to it. I don't want to. I'm okay with being uncomfortable accepting help... if that makes any sense.
Please send thanks for Crossroads Community Church of the Nazarene in Tennessee on my behalf. I will be sending them too, but I don't think it hurts to have thanks coming from all directions- including Iceland, Hungary and Australia if that's something you do.
I am humbled and blessed.

On another note- A fellow blogger and Sister-In-Arms against the bastard that is cancer lost her brave battle with Breast Cancer this past Saturday. She was a fighter. She sometimes posted a reply to my blog and posted to my Facebook too. Damn cancer for everyone and every THING cancer takes from us. Please support cancer research when you can. Rest In Peace Daria. I fight for you too.

Wednesday, January 19, 2011

I have a date... I don't think he's paying for dinner though.

I have bought the ticket and reserved the rental car.
I will be heading back to Texas on Feb 1. Screening on the 2nd, vaccine on the 7th.
Not a moment too soon I think. The pain in my abdomen is getting worse and I'm getting more and more paranoid about it. I was under the impression that Dr. Sardi had debulked quite a bit of tumor but hell- I don't know. I've been duped before. I thought I was 'good' for a while. That some down time to get a plan in place and get it started wouldn't have many drawbacks. If this pain in my abdomen is the cancer taking over then I need to get to my 'arrangements' that I've been putting off. I should do that anyway.
I am stupid paranoid about this though. It's hurting- I won't lie. I'm going through painkillers like an addict. Hey- it's the truth. I still have to function. You don't stop being a Mom because you're in pain. You might slack off a bit, but you can't just throw your hands up in the air and say "I can't be a mom today- I hurt."
So I am leaving work early to go home and lay down before the girls get home.
It's a shame that a week with such a high had to be followed by total crud. I guess at least I had that high, right? Otherwise it would have been just another week followed by total crud.

Well, here's to hoping the next 2 weeks fly by without any complications. Let's get this vaccine show on the road folks!

Sunday, January 16, 2011

On With The Show

I'm still processing the last week. The trip to Disney was such a huge thing for us and so dear to me, it will be a while before it's really sunk in.
Not enough 'Thank Yous' in the world.

On the cancer fighting front- I have an appointment on February 9 in Dallas for my screening then getting my vaccine on Feb 14. So I will be in Texas for a week. I will probably be heading to Austin for the waiting days to visit with my friend Jamie. Love him.
I will be doing some calling on Tuesday to see if I can get in any earlier before I get a plane ticket or calling the ACS about the free flight. I've been getting increasingly uncomfortable in my lower abdomen and I can feel hardness and lumps when I push around it. It sucks because I hear a clock ticking and the cramping is kind of a constant reminder that the vaccine is one of the last hopes. I don't really know what I'll do if it doesn't work. Can't think that way but ugh, the discomfort is constant... Was through Disney but I refused to acknowledge with anything more than popping a pill.

I'm anxious to get this started- and I WISH I could get real numbers on how well the vaccine works. I know- just numbers- but it's something to lessen the unknown.

Well- I will have more concrete plans on Tuesday. And like a good blogger, I'll let you know!

Friday, January 14, 2011

I don't even know where to start.

One week ago I was heading to the airport for a flight to Orlando, FL and Disney World.
I didn't know what was ahead of me.
Before we even saw a volunteer from Inheritance of Hope, I recognized a fellow survivor I'd corresponded with a couple of weeks ago. We all loaded up on the bus for the resort- staying at Coronado Springs. We had just enough time to find our hotel room and get the girls changed since we had their clothes suitcase as carry-ons. We didn't get to change because our luggage hadn't made it to the room yet.
We found our way to the banquet room where dinner was being served. As we sat down for dinner we met what seemed like hundreds of people- volunteers, other families like ours, I was so afraid that I wouldn't remember names and embarrass myself. Luckily everyone wore name tags. :)
After introductions there was a knock at one of the doors and a little boy answered it... Mr. Mickey Mouse was on the other side!
Instantly Vera tried to wiggle out of my lap and Iris didn't know what to do with herself. Once Vera got to him, she wasn't about to let him out of her site- so the volunteers had to distract her with tickles so he could make his escape.

From there- the volunteers took the kids to do activities with them while the parents went to rooms for discussions. Everyone talked about diagnoses and family situations. Of course we had some things in common and though I don't wish this outlook on anyone, it was nice to have someone TOTALLY understand your situation.
The girls were beyond exhausted by the end of the night- Vera fell asleep on one of the volunteers. She doesn't just do that with anyone so with that, she had picked our volunteer for the weekend. The next morning at breakfast we asked Shelly if she wanted to tag along with the family as we went to the Magic Kingdom. We were thrilled that she came with us. She was a total blessing. The girls loved her and Jason and I really enjoyed talking to her and getting to know her. She held a place in line for us to meet Rapunzel and Flynn Rider while we took the girls to look around. She took pictures, changed diapers, grabbed snacks and so on. What a blessing she was. And I'm sure she IS to her family. I am sad to say that Iris chose NOT to get the royal makeover... she only wanted sparkles in her hair and that was it. eh- no big deal I guess, I just thought she'd want to get done-up.

So Iris and Vera got to meet Rapunzel and Flynn and Tigger and Pooh a little later.

Most of that first day at the park was spent looking around because it was a little more packed than we'd expected and we had to be at Disney Hollywood at 6pm so we didn't want to lose track of time and end up being late.
Dinner was with the IOH at Pizza Planet after the group photo in front of the big sorcerer's hat.

Sunday we hit the Animal Kingdom- my cousins Carla and Kelly met us there for the day. :) We got to meet Rafiki and Pocahontas (another MUST VISIT for Iris) and watched the parade then caught the Bug's Life show. Vera was NOT a fan of the scary part, but she made it through. And we rocked the 3-D glasses...

Sunday night we had dinner and sent the girls off for "Kids' Night Out" The volunteers took the kids to the Magic hours @ Disney World while we met with the counselor that worked with Iris a bit. She said Iris was not showing extreme signs of grief or distress. I was happy to hear that she was a very average 4 year old. That kid deals with more than any 4 year old should have to.
After that, I made my Legacy Video. I chose to pick questions to answer about myself on video. Just a little something for the girls to have- to learn about me. Things they might not think to ask, things they may want to know after I'm gone. I did pretty well until the end "What do you want your girls to know?" ugh.

After I composed myself, we headed to Magic Kingdom... by this time it was 10:00pm... just enough time to hit Space Mountain one time before the park closed at 11. We met another couple from the retreat- Mike and Kristi- Jason took one look at Mike during our first group session and figured they'd get along great. Jason was afraid he'd end up very lonely, but he and Mike had a lot in common and found some camaraderie. Both 30-something dads of young children (their children were pretty much the same ages as Iris and Vera) with wives in difficult medical situations. Guys need support too, and I think really that the spouses need more support than the patient at times.
It was nice to get to know them and I'm sure we will be in touch with them from now on.
We left the park that night, and I didn't know that we'd walked right past t Shelly- that had my girls with her. They were piled on each other- Vera fell asleep in Iris' lap and Iris was sleeping on Vera's back. LOVE IT!
So we got them back to the hotel for some much-needed rest.

Monday morning was breakfast and closing ceremonies. They recognized all the volunteers who gave of their time to help the families on retreat. The volunteers were beyond wonderful. The Volunteers also presented us with photo albums with pictures from the weekend. It was hard to keep real composure... I can go from smiles to blubbering idiot in .10 second. I was so grateful for Shelly and the other volunteers who were so great with my kids.
The founders of IOH - Kristin and Derek Milligan- stood up to speak. It is because of their vision that we got a dream weekend with the girls and have pictures and memories forever. It was really a worry-free weekend. I don't even have the words to thank them for everything they did. I met them both and I think the world of them. Both super people- doing all this for others while they are dealing with their own hardships in the same arena. It's beyone anything I can even describe accurately.
I am actually having a hard time closing this post out. I just want to gush and gush about the people and the memories. And I am afraid that I've overlooked something.

Let's just say that I am continually trying to pay forward all the good that has been afforded me.
It was a dream weekend and a real blessing for us. I will never forget it.
Thank you Inheritance Of Hope.

Watch the Video

Wednesday, January 12, 2011

Sorry I haven't updated- the Disney trip was wonderful, so much that I couldn't blog about it properly without proper time to do it. I hope I will have that time tomorrow.
For now I will say that it was a great experience. We've all come home with so much more than souvenirs and pictures. I just hope I can do justice to how I feel about it tomorrow when I can sit down and write.

More as soon as I can.

Tuesday, January 4, 2011


Just a short, happy note.
The Mary Crowley Center called this morning. They have 5 vaccines ready to go. I have to go once this month for a screening, then I will go back in February for the actual vaccine.

So Yay for being in the 80%!

It's a good day.

Monday, January 3, 2011

A Week To Remember

Well, the New Year is here.
I want to approach 2011 with excitement, hope and positivity. But honestly, I've done that with every year since 2008 and it never seems to pan out.
I've had bits of good- but nowhere near a span of a year with GOOD.
This week is kind of a clincher: I'm waiting on the phone call from the Mary Crowley Cancer Research Center to see if they can actually make the vaccine for me. I want to call them but I'm scared to death to do it. I'm on the edge of my seat really. This is like having only one basket in which to put all your eggs. So I did. High hopes- and that means a hard landing if it does't pan out. I'm half expecting bad news because I can't really remember any good news that actually turned out to be good news as far as cancer treatment was concerned. It's been "Well, we ____ but there's still _____ and more than likely (insert something awful here)" Irritating.

But also this week- The family trip to Disney World in Florida! I haven't even started packing- but I am making a list of what we need. Does that count? It'll be a happy hassle to get out summer-ish clothes, plus you can pack more. I guess they will have volunteers going around with families to take pictures. Beautiful! I'm usually the one behind the camera so those 'memories' would be- "See the picture your mother took?" And you can only take so many self-portraits, you never see the background. Hello. I don't have much patience for people who say "uh, I don't know how to take pictures." Really? You can't point the camera at what you want a picture of, make sure it's all on the screen, then push a button? C'mon. That's a piss poor excuse to get out of it. Carry a camera and take pictures for 5 minutes. Voila! You can do it.
I took pictures for a family at the Statue Of Liberty. They wanted the NY skyline in the background. Simple. They got great pictures, I held the camera up (mind you- I'm only 5'2-1/2") but got them AND the skyline... that was the reason for getting the pics on that side of the statue. So we wanted the same picture with the whole family (AND the NY Skyline)... you know what our picture looked like? Poo. Yeah, we're all in it- but were we at the Grand Canyon? The Eiffel Tower? The Space Needle? Branson, Missouri? You'd never know. They didn't bother to hold the camera up another few inches to include the skyline.
It's like other "should knows" in life. You should know how to take a good decent picture. You should know how to make ramen noodles. You should know one really great movie. You should know one GREAT one-liner joke. You should know how to replace the toilet paper roll. (This one is a problem in my house. When I die there will be piles of toilet paper tubes alongside the toilets- and nothing on the actual holder.) You should know how to get a hold of a super Fix-It guy.

Eh, More life lessons from moi. And I've gotten off track again.

Bitch, bitch, bitch. I'm done for now. I promise.

I'm really stoked to get to Disney to see the girls' faces light up. To see them the first time they encounter a "Princess", the first time they see Mickey Mouse. I forget a lot- but there are things that sear into your brain and I just know this experience will be one. Right up there with hearing "I love you too" for the first time from each of the girls.

I will update if there is news to tell before then.