Sunday, July 31, 2011

Benefit Sale went well!

This weekend was our first annual 'Cancer Really Sux' benefit sale, and it went very well.

Over the past month, friends and family have donated their
gently used (and sometimes brand new) items for us to sell this weekend. We organized it, and this Saturday and Sunday we sold a LOT of it! We still have a great deal of donated items left, and will be donating it to a combination of the men's shelter, an organization to help te
ach women job skills and get them to work, the abused women's shelter and our local children's foster organization - Casa de los Ninos.

I took a picture of the stack of money we took in (mostly ones, of course, this was a yard sale), but it does look impressive. :)

We earned more than enough to help us cover our costs with traveling to Indianapolis for Kel's surgery, and with the additional money we will start the 'Cancer Really Sux' Memorial fund, a reincarnation of the Dena David Memorial Fund. Fitting, since today would have been my mother's birthday ... her 62nd. We missed her today, but honored her memory well ... by selling even some of her stuff! :) She always did love a bargain.

Unfortunately the new 'Cancer Really Sux" mugs did not arrive in time, but they will be in on Monday. Oh well, I will add them to the website and hope they do well there!

Onto Kel: He is doing alright, albeit still slowly progressing and in pain. This weekend reminded him of how much he still needs to improve before going back to duty. He seemed to get hot very easy (not hard since we DO live in Arizona), and tired after carrying just a few items (which he was not supposed to lift anyway). It is a slow recovery for sure. His next blooddraw is this week on Thursday and we get the results next week on Wednesday the 10th. Let's go REMISSION!! Let's hear the magic words.

I am sunburned, exhausted, and happy. I am glad it went so well, glad it is done, and glad to be in bed. Thank you to ALL who donated - stuff, time, or money. We couldn't have done so well without an amazing support group! As I mentioned this is the 'First Annual', and I hope to make it a yearly fundraising event. We will see how much the momentum carries us.

Goodnight to all, with much love,

Thursday, July 21, 2011

48.5 - good news!

First, sorry I didn't write last night after Kel's appt - I should have, but got caught up in teachy stuff and prepping for the benefit sale.

Yesterday we met with the oncologist to get the results of Kel's bloodwork. We were expecting his AFP (major marker that has been troublesome) to be between 50-60, assuming a normal half-life of 6 or 7 days ... and were were jumping with joy when we heard 48.5! This puts the clearance of the protein back on track (rather than rising like it did through the ends of chemo and before surgery)! Assuming this keeps going, which we fully expect it too, he will be in remission by our next appt in early Aug (8/10, to be exact)!

Let's go REMISSION!!

What a wonderful word that will be to hear for the first time. I think I might cry in joy. :)

The next blood draw is on 8/4 with results on the 10th. He is having an ultrasound of his kidney this morning to make sure all is ok after the stent removal (fiasco) on Monday, and things are trucking along. Kel is slowly healing and feeling a little better each day. He even went back to work for the first time in 3 weeks yesterday! :) By the end he was tired, but he did GREAT (can you hear my good mood through these words today?).

The rest of us are doing well also - David has had a few really good weeks. The psychologist's advice of not having us suppress his aggression (let him get it out when he needs) has seemed to help a lot. He has been good at school and good at home. He is always asking how Daddy's belly is, so I think he is looking forward to Daddy getting better and playing. :)

I am prepping for the benefit sale in 1.5 weeks (ACK!). I've separated out the donations, started pricing a few items (getting help on Sunday from great friends on the pricing), the mugs will be here in time, and the shirts will be back too. :) I'm making an order form in case (we hope) we run out of shirts or mugs, and have borrowed some tables for the sale. It should come together nicely!

In the meantime I am a teaching and grading machine ... and somehow still behind. This is the last week for my online class so I am scrambling to grade, only 2 weeks into my summer course, so I am racing to get lectures ready, and .... sleep? I can sleep later. It is hectic, but it will all be ok.

That is about it from here: what doesn't suck is DEFINITELY good AFP numbers and being on the way towards Kel's remission! We won't know if or when the #s will rise again and we may have to face the high dose chemo still, but we will accept and celebrate ANY positive news and step in the right direction. So today, as the students take their tests in front of me (shhhh, don't tell them I am writing a blog while they are struggling with exams) I celebrate the POSITIVE!

Thank you,

Monday, July 18, 2011

Pain today, gone tomorrow

Ok, I am really, really tired, so my 'Title' was lame. :) Sorry!

Kel had the stent removed today - FINALLY - after it being in for 7 months. Unfortunately, he was awake for this procedure and it was agonizing (only way they could fit it in before September, apparently). A small bit of lidocaine at the 'entry point', snaked up through the bladder and removed the stent from the ureter. Apparently the stent was quite calcified, so Kel is essentially dealing with stones right now. Oh, joy.

The rest of the day he has been in significant pain and discomfort, but the blood in his urine is decreasing.

It is unfortunate that he had to be awake for that procedure, but he is quite glad it is out! The next big event is a meeting with the oncologist on Wednesday to get the results of the b/w (need the AFP #s to go down to 50-60) and an ultrasound follow up on his ureter on Thursday to make sure it doesn't need to be replaced after the stent is out.

For now there is no chemo or anything else but surveillance planned, and hopefully we can get an idea on Wednesday about scheduling that all (monthly, every 3 months, etc).

Otherwise, we have just been planning for the Benefit sale in just under 2 weeks (ack!). I need to start making signs and have been organizing all of the items for sale. I will be creating an 'Event' on Facebook (not tonight, too tired and have to teach again at 7am), so if you are in Tucson, keep an eye out!

So to end tonight, a quick (if not obvious) sux - I would have to imagine that being awake while having a tube removed through your bladder and 'out' would REALLY have to suck! The subsequent pain and blood has not been pleasant for Kel either, but it is out and this is one more step closer to a break!

Half asleep now, so good night!

Wednesday, July 13, 2011


As I expected, we did not get much sleep last night, so we are both exhausted and soon going to bed.

I did, first, want to let everyone know that Kel had his staples removed today! He is metal free and covered in steri-strips. There were 33 staples removed (he had me count). The wound is healing well (yeah for good news!) - see below.

He is still not sure if he will go back to work tomorrow. The pain is still plentiful, and he is tired often. We will see what he can handle tomorrow.

We still haven't heard about all of the upcoming appts, but it looks like he will have blood drawn on Friday, the stent removed on Monday and a follow-up with the oncologist on Wednesday. Things are moving along. If all is going as it should with the AFP in his blood, we should hear that it is 50 or less.

What doesn't suck for today (going for more positive) is that the removal of the staples was not as painful as Kel had anticipated and he did well. Only a few 'stung' because of the scabs already forming. He will have a gnarly scar, but it is slowly healing.

Off to sleep now,

Tuesday, July 12, 2011

Cancer won today (not in reference to Kel, but includes an update on him)

First, I am sorry that I haven't posted in a week. Everything is really busy with another summer semester starting and I am more than burning the candle at both ends.

I will update about Kel first, and then vent/scream/cry about a friend below.

We finally got the pathology back from Kel's surgery. The mass they removed was pretty large - about 10+ cm x 6 or 7 cm. They found teratoma, seminoma and yolk sac carcinoma. We were a little shocked that there was no embryonal carcinoma (which was all that was found in the original mass).

The good part is that yolk sac is known to produce a lot of AFP (the marker in his blood) and explains the increasing #s. Also good is that there were some lymph nodes on either side of the mass that were free from cancer, at least anything visible. That doesn't mean this is definitely a cure, but clean margins are a good sign.

Kel has his staples taken out tomorrow, his stent on Monday and should see the oncologist again next week after more b/w to see if the #s are still going down. He is feeling a little better everyday, but it is a long and slow process. He is planning on going back to work on Thursday, but we will see.

Ok, the rest below is saddening and maddening and makes me want to go pour bleach on all of the cancer cells at work since I really just need to kill cancer today. It is not about Kel, so if you are having a bad day yourself and don't want to read anything sad, please stop now.

Today my dear friend Christy Ley Hood lost her fight against Acute Myelogenous Leukemia. The end was fast and shocking and we are sad.

I first met Christy after Kel and I had a few miscarriages and we were undergoing all of the testing and fertility treatments, etc. I joined up with a group of women online going through similar experiences. It is there that I met Christy - aka the Screaming Bird.

Christy was funny, and as vulnerable and torn as I was. In a group of wonderful and supportive women, she was one of the most involved. We spoke often, and though she lived in GA and sadly was one of the women I never had the honor of hugging in real life, we were all bonded as friends for life.

Christy had her daughter, Sarai, soon after David was born. Sarai was the light of her life. She is a beautiful 4 year old who I dearly hope will have wonderful memories of her mother. Even when Christy knew her leukemia had relapsed and it was dire, she endeavored to make sure that Sarai had a special 4th birthday party before checking into the hospital.

Christy was diagnosed near the end of mom's disease, and when mom passed, I shared some of her scarves with Christy. When Kel was diagnosed in December, Christy was in remission, but she was quick to befriend Kel and become a great cheerleader for him. She raised the spirits of us all.

One year into her remission, Christy learned that the leukemia was back and she needed to get ready for an immediate bone marrow transplant. She never got that far. With no immune system, she quickly succumbed to an infection that put her on dialysis and into a coma and today we learned that she was lost to this world.

The news hit hard all around the country, for the depth and breadth of lives touched by this special woman was large. Kel had only known her for a few months, but felt her power just as much. When I heard, I cried and cursed and cried some more.

Christy fought SO hard against the cancer, in her path to having Sarai, in life. She isn't supposed to have lost. She isn't supposed to be gone.

This reminder of how much this disease can rob need not have come. I know it. I get it. I live the day in a day out of it as Kel and I fear for the future. We hope and we fear. We hug and we cry. We just don't know. And then it just pulls the rug out again when we lose someone who is supposed to be in remission and surviving. What good is remission if it can be stolen away? What good is hope if it can be devastated?

I find myself for the first time screaming 'Why' to the heavens! Why?

Damn it, cancer sux. Cancer f'ing sux.

Christy, you may be gone from this world, but your light shines on and you will always be remembered with love in our hearts.

Hoping to get some sleep, but doubting it,

Tuesday, July 5, 2011

Worst. Travel day. EVER.

Ok, maybe not ever, I am sure others have had it worse, but today was miserable for all.

First, our alarm at the hotel in Indy never went off. Thankfully I am a fitful sleeper when we have to be up for something, so we only lost 15 min.

We made it to the airport on time, boarded, and waiting at the gate. Then on the tarmac. And then some more. So we didn't take off until 45 min late.

The plane made up some time in the air, but not enough, so even though we could hear our names being called, it took too long to go from where we landed to across the ENTIRE terminal in Minneapolis to our new gate, even racing on a cart. We got there just in time to see them close the door.

Not good.

So, we are turned away and I go to rebook. We get routed through Pheonix 3 hours later and then onto Tucson. As for where Kel can rest? Just some random gate is where we are referred. But Kel went up to the gate assistance area and we got referred to traveller's assistance where they were nice enough to let us use their cot/rest room hidden away. Kel was able to lie down, as was David for his nap. Made the next 3 hours much better.

Then we make it to Phoenix where they don't have anyone ready to wheel Kel in the chair over to the other terminal (I officially hate the PHX airport - you have to leave one terminal, take a bus to another, re-go through security and get to another gate), so by the time that all gets figured out, we are running again.

This time we make it, get on the tiny, cramped airplane, taxi out ... and wait on a hot, hot plane with no working a/c. And we aren't allowed to take off because of the storm in Tucson, so the plane goes back to the gate and we de-board.

By this time Kel is in pain, exhausted, frustrated and just miserable. No news on when the plane will be leaving and we start calling car rental companies to see about a one-way trip. CRAZY! One company wants $130+ and another wants ~$250! Yet another doesn't do one way rentals, and by the time we went through all of that, we are re-boarding the plane.

During most of the trip, David was a nightmare, kicking, hitting, throwing fits, etc. But at least at the Phx airport, he was good for a while!

This one finally takes off, and about 7.5 - 8 hours later than we were supposed to be, we are home.

And we get home to a downed tree in our front yard (which our amazing neighbors were nice enough to move out of the driveway so we could park) and no power. David had to crawl in through the dog door, and we lit some candles, but now we are all set.

So for sucking tonight, An exceedingly long travel day so soon after major surgery with Kel in massive pain and exhaustion only to come home to 1/2 disasters ... but what doesn't suck are the helpful volunteers at the Mnpls airport who found a good place for Kel to be comfortable - thank you.

Oh, another sux is Beki, who didn't have her phone on her when I txted our 3 hr delay! I could have enjoyed her company during that time, had a cake ... you know, enjoyed my time! just teasing, B!

Time to sleep now,

Sunday, July 3, 2011

On the mend

Sorry I didn't update for a few days, took Friday and Sat off.

Kel is doing a LOT better - slowly but surely. He is still in the hospital because he had a bout of vomiting last night/early this morning that they wanted to make sure was ok (seems like his intestines weren't so keen on being moved away for surgery, then put back in and still be expected to function? Plus he isn't eating so ... yeah, not happy intestines). But he is in a LOT less pain (pills every 10 hrs or so, rather than every 4) and moving around really well.

For those interested, I will post a picture of his scar below ... for those not? Well, don't look. :)

We still don't know anything about pathology. However, we did get good news on his biomarkers today: the important one went from 390 on 6/20 to 214 on 7/3! Presumably, they were up even higher from 6/20 until the surgery on 6/28, so this decrease is fantastic news!

Just as a reference, this protein (AFP) has a half-life in the bloodstream of ~ 1 week, meaning if he started at 400, 1 week later it should be at 200, one more week at 100, etc. Presuming the normal clearance, he should be (FINALLY) in biochemical remission in early August! PLEASE?!?!?!?!

What else ... David is getting stir crazy, although still being mostly good. He keeps asking me if he can go to school today, or when are we going home? He needs to run more than he can here, but Kel should be released tomorrow, my Dad will go back to Vegas and the next morning we fly back to Tucson. From there he can run.

And to those I haven't emailed, or who haven't seen the posting on FB: We decided to have a 'Cancer Really Sux' Benefit/garage sale for Kel, and for my 'Cancer Really Sux'
research efforts (an extension of the Dena David Memorial fund).

The sale is being planned for July 30 and 31 (my mother's birthday was the 31st) and we have stuff to sell, plus are asking for donations of items that are being cleared away in 'spring/summer cleaning' from our Tucson friends. For those in Vegas - my father may be driving down, so he can bring a few things too! Just email me.

I am attaching the asking for donations flier here. I will also be selling my 'Cancer Really Sux' t-shirts, hopefully will have mugs made, and can take orders for the personalized messenger bags. :)

That is about all I have, so:
What sux is still not having the pathology report, but I am sure we will soon. What sux is having to stop David from hugging his Daddy when that is all he wants to do when he sees Kel, but that would be too painful (see scar below). What sux is having a cancer benefit sale on my mother's birthday - just because there is too much damn cancer.

But what doesn't suck is FINALLY seeing Kel's AFP #s go down again! Having an indication that things are back to moving towards a CURE!

What doesn't suck is having the love and support of family and friends behind us always.

We love you,

I warned you ....