Rough end to a rough week

Chemo is getting harder and harder on Kel. He looks quite anemic and has been sleeping most of the day. Energy is harder and harder to come by lately for him. He slept well last night - almost 8 hours, and then tacked on another 5+ hours during the day. Then he went to bed earlier than David and has been sleeping for a few hours already.

Other than a shot of stimulating factor to stimulate red blood cell production, I am not sure what to get for him. Iron may help a little, even if just to allow his hemoglobin to carry more oxygen.

I was catching up on a few back episodes of Grey's Anatomy while everyone else in my house was sleeping, and a few weeks ago the episode was about how important one hour can be and how much can change in an hour. It made me think of many 'hours' - the first time Kel felt significant pain in his abdomen/side that we ignored. The hour between leaving his CT scan, getting a call from the PCP and going to the ER. The hour when we learned the source of the mass in his back ... and oh yeah, in his lungs too. Most of the time in between those hours are a blur, but those I remember. The hours that flipped our world.

Feeling sad and angry again tonight at all of this cancer crap. I think the people in this house shouldn't go to sleep before me. It makes me sad and angry. Not that they are sleeping, it just gives me time alone to think.

Think of pain, and sorrow, and lost loves.

We past a graveyard taking Sue to the mall on Saturday afternoon. Whenever we do that, David points out where Nana is. And I explain again that while it is similar, Nana rests in a place by Papa's house. And then we go through it all again - why? Where is Tahoe? Are Tahoe and Nana together? And it lasts a few days because I don't know the words to explain to a not quite 4 year old where we go when we die. All I can explain is that they aren't in pain anymore. And for them not to be in pain anymore it means we can't see them. We just have to remember them.

This is probably the bigger source of the sad and angry, not other people sleeping.

David didn't get to say goodnight to Kel tonight because he was already asleep. But we came in to the room so David could whisper to Daddy. And we hope daddy feels better tomorrow night for a hug and a kiss.

Thankfully Sue will be here tomorrow to help take care of David, since I teach again. But then she leaves Tuesday afternoon. It has been a great help having her here, and a comfort for Kel.

My head is starting to hurt from crying through writing this, so I am going to conclude with the sux for the night. I will be fine, btw, it is good to cry sometimes.

Ok, chemo fatigue has got to be tonight's sux. Fatigue so bad you can't walk, or move around too much, or do anything really. Unrelenting tired. All encompassing tired. And that is only what I can see, I don't even know. I just see Kel falling asleep all of the time, and so fatigued that he can't keep his eyes open while walking through a store. But then he wakes in the middle of the night and will be up from 3 or 4 am on. The fatigue hits hard, but randomly, and in doing so unceasingly perpetuates itself.

Unrelenting tired. And that sux.

Missed a few days again...

Sometimes I forget and am lazy, sorry I haven't written in a few days.

Today was Kel's 4th day of the 3rd cycle - off one day still since he had to miss Monday. Not a great day, he was feeling pretty sick to his stomach and had problems with his i.v. They left his line in since Tuesday, since it was in a good spot and he has really difficult veins to stick. However, today his arm started to swell and was painful. He had some infiltrate from the line into his tissue and they had to switch arms.

Kel was tired when he got home, since he is still not sleeping well at night, and slept for a while, which was good. He is supposed to be keeping his arm elevated to help with swelling too. We will see how he does tomorrow.

Even with a tough day, overall Kel is doing well. It is still surprising how well the physical side effects are controlled, especially the nausea. Kel says the most discomforting side effect is the metallic taste in his mouth (which was so strong the other night I could even smell it) and the loss of taste buds. (knock on wood) so far the peripheral pain was only transient. Psychologically is another story, I know he will feel better in April once the follow up CT is done and he knows if this is it (80% chance) or if he needs more surgery and chemo. The not knowing is the tough part.

Tomorrow will end the heavy chemo of cycle 3. To date he has 18 days down and from tonight he has 8 more days of chemo to go and ~ 2 months before knowing if he is done or more.

Oh, and good news too - his tumor markers are down even more from the 2nd cycle (bloodwork for those is only at the end of each cycle). His biggest one was AFP (normal is 0-7) at 13,700, down at the first cycle to 1700 and down now to under 300. All others are ~ in the normal range. After this 3rd cycle, we hope to see all back to normal with one more week of chemo to go!

David has been good for a few weeks now, mostly, and was again today. Even Saja was (mostly) good. He just wouldn't leave crochety old Hudson alone since the old man went to the groomer today and smelled different. Saja was constantly sniffing Hudson and getting growled at for his efforts. Stupid puppy just doesn't learn.

Sue has been a great help too - my dishes are never done this often! We had a nice dinner out last night at our favorite Thai restaurant in town (for those in Tucson, the place is Sa-ing in Rita Ranch) for my birthday. It was a good day.

I was informed that the next 'sux' was the metallic mouth. Kel had braces for almost 5 years, and now that the metal is gone from his mouth, chemo is putting it back. It is mainly on the first week of a cycle when he is getting daily cisplatin, but he can't get rid of it. Brushing is only a temporary relief. He hasn't tried ginger lozanges or anything yet, maybe those will help. It being so strong I could even smell it was pretty remarkable, and I can only imagine how much that effects Kel. Definitely a sux.

Getting some sleep before giving an exam tomorrow, so goodnight,

Tracy

All about Kel this evening

I took this morning to vent about me, and thank you to all who lent hugs, loving words, or eyes to read my whining.

Kel had chemo today!! His WBC counts went up over 3 fold and was even marked as 'high'. So he got his poison, no problem. ;) And they will treat today as Monday and just tack on a Saturday to make it a full week. Sue went with him, but Kel mainly slept. The i.v. is even in a good spot, so they left it in at least overnight and maybe all week? That will be good since the 'sticks' are getting to him.

At his request we went out to dinner at the Mongolian Grill tonight - yum. Moderately not bad for you too, since you can control what goes in to your dish. Then we came home and watched the Blind Side (finally). Overall a nice evening.

Stuck for things to write - it was an ok day. Kel is obsessing about his chances for getting another cancer (other than the increased risk of leukemia associated with chemo), and life insurance companies jacking up the rates on him due to actuary tables. I think I am going to have to look and see if I can find any epidemiology studies for those who get testicular cancer and their rates of getting any and all other cancers.

Just what I need - more work! Oops, sorry, that was complaining about me again. ;)

Actually, just not sure if those studies are done, but I can look.

Nothing else to report, and I am going to cheat and just refer to my morning post for what sux.

G'night,

Tracy

All about Tracy post this am

This is all about me. I will write again tonight about Kel. Unsettling morning for me, so please bear with me as I vent.

Today, I officially threw in the towel.

I have to back up first, for you to fully understand. Kel and my road to David and having a family of more than 2 was a long one. We first had 3 miscarriages, years of infertility (on my part), drugs, procedures, etc, and to no avail. So we started the adoption process, and 1.5 years later had one of our best moments ever when we flew to Seoul, S. Korea and met David on 12/26/2007. It was great.

Over the next 3 years we weren't really trying for a family like before, but you never really stop trying either. It is always a possibility month in and month out. Everyone tells you stories of mystical couples they knew that had kids after adopting, or after they stopped trying. None of this is to diminish David - he is our SON, our child, our everything. A biological child would be no different, heck, we would even adopt again if we could (another long story there). But every month there was a glimmer of 'maybe'.

The day Kel went to his PCP with extreme back pain, I had my annual with my OB. She is a GREAT person. Her husband was actually the doc I went to through my drugs and treatments when we were trying. They are a great team, and as I left that Tuesday 12/28, she made a comment to me about 'You stop trying, we will get you pg yet.' Sweet.

We all know the next part - back and abdominal pain became known to us as metastatic testicular cancer. Curable, so let's go. Right before surgery they offered to "bank" for him for the future. We already knew I was pretty much unable to have kids, so this makes us even - no thanks. We are ok.

A month or so into all of this I realize - hey, if I can't get pregnant, why on earth am I going through monthly 'annoyances'? There is no reason for me to be in pain and go through it, so I made another appt with my great OB. Actually, I made two, since I arrived a day early for the first one a week and a half ago.

The appointment (remade) was this morning. The waiting room was dutifully fitted with pregnant women and me. And one young pg woman, which for some reason always sting the most. This is something that can really only be understood by others who have gone through the losses or infertility bit. It is probably a jealousy thing, but seeing pg people sometimes hurts. A lot. Reminds me of my failures, I guess (don't chastise me for this one, I am being honest here, not rational).

I just hold on to the almost 30-lbs lighter me with a great suit on (chosen partly by David) and awesome 4-inch stiletto shoes that I catch the pg woman eying. I may not be pregnant - but damn I can look good. ;)

So, ok, I get to the room, read a magazine and wait for Dr. Jenny. And while I wait, I hear some loud noises in the next room - an ultrasound being set up. It is normal, everyone else in the office is pg and want to see and hear their progress. Then my heart drops because in the next room I hear what I will never hear in person - a heartbeat.

Mine skips a beat.

Why did I have to be in this next room? To add insult to injury and just drive the stake in a little further? Ouch.

Dr. Jenny comes in, we talk, I fill out the paperwork and will get my resolution in another month or so. Gosh I hope when I go in again I won't have to hear another heartbeat.

I am at work now. Grabbed a chocolate scone with my coffee and going to forget about life's little stabs of pain in some delicious shortbread and ignore my diet for a few. Chocolate aids all.

Thanks for listening,
T

C3P0

After using R2D2 I really needed to find a way to use C3P0, although this was not what I was thinking ...

Today was the start of cycle 3 (hence C3), but unfortunately Kel did not get any chemo (hence the P0 for period 0). They started the day with some bloodwork, and his white blood cell counts and differential were too low (too myelosupressed), so no chemo for him. Instead he received a shot (I am guessing of Epopoietin, but he doesn't remember the name) to increase WBC production. He will go back tomorrow for more bloodwork and hopefully chemo. I will have him get a report of his tumor markers tomorrow too so I can report them.

I think he is a little bummed about not getting chemo, not that it is a fun thing to get, but this is a little off track. It is entirely normal - the nurses even made a comment about this being his first time missing a day being not bad - but still a little upsetting.

Kel already isn't sleeping too well through the night, so giving him one more thing to obsess about isn't fair, but he is able to take big naps during the day so he is making up for the time.

Sue (Kel's mother) arrived in town on Saturday and they (and we) have been having a great time spending ... well time ... together. They even burned a Christmas tree together yesterday (my idea to start the fire though, since it was cold), and that went up in a giant "whoosh". Interesting ... Kel was trying to burn my house down! :)

David was very good at school today. He has actually had several days in a row of being very good and has even completed one big potty training hurdle (sorry tmi for anyone not a parent of a toddler) - he is able to entirely go by himself for every 'function'! Still working on the night time part, but all else is going really well. I like "David-being-good-at-school" days. They rock!

For me, my clutziness is reaching epic levels (and for anyone who knows me, that is really bad)! Tonight I dropped my cell phone from my tucked away-hidey spot up by my shoulder (this one you can guess), my waitband, and even into David's bathtub! Kel says I have been dropping things quite often all around the house. It could be the billion things I am juggling - both physically and mentally ... just me being me ... or my personal favorite, the weight loss. I just don't know how to hold things when I weight 29 lbs less? ;) That was today, btw, 2.5 lbs down for my 10 lb goal by St. Patty's day! Kel eats McD's burgers ... I get 7 L of water. Sounds fair, right?

I am tired, and nothing else to report, so onto the sux portion:

Myelosuppression. Kel has been doing really well on therapy and is on track. While this is likely to make no difference, it is still disheartening, even in just the irrational parts of our brains. Crossing our fingers for tomorrow, and I will let everyone know.

Cancer still Sux.

Tracy

Our cup runneth over (aka, the amazing generosity of friends)

I am yet again awed and amazed at the support and love from friends, especially work friends (all friends, really, but tonight's blog is about friends from each of our works).

When Kel was first diagnosed, I let my friends and colleagues at my Women of Biosciences Toastmasters group know that I wouldn't be able to serve as an officer this 6-months, and just to tell them what is going on in general. This is a group of women from all aspects of science work - students and professionals, bench scientists and more. Many of them have worked in the same building as me for years, and I didn't get to know them until we all joined this group (whose main focus is actually improving all of our public speaking skills and leadership skills).

Anyway, after the outpouring of support emails and phone calls, they organized a 'dinner chart' to help Kel and I eat well made and easy dinners, especially once teaching started. The food has been not only amazing in concept of supporting us, but also in taste and has turned out to be a wonderful help. They continue to surprise us with generosity and love. I am forever grateful.

When Kel told his co-workers, one of the things they immediately brought up was leave donations, since his first 3 weeks off burned through most of his banked time and we were preparing for time off without pay. Kel filled out the form to allow leave donations, but being the guy he is never wanted it announced - he didn't want people to take away from their sick time in case they needed it. He finally allowed at least word of mouth to be passed that leave could be donated, and 2 days later he has more than enough time to take care of the next 2 chemo weeks.

The generosity of Kel's 'other' family, in blue, is heartwarming. Thank you all so much for your support of Kel, and for getting through his thick skull about not wanting any help!

Report on Kel's health:

He is doing fairly well, but was exhausted tonight. He was in bed and asleep before David again - by about 8:30. His weight is holding steady (he has actually gained back ~5 lbs from his lowest point in cycle 1), and still no bad nausea. He takes anti-emetic drugs daily, and prevacid to help with heart burn. Still no tastebuds, but he just doesn't bother with the 'tasteless' calories - like peanut M&Ms! David likes that, since he LOVES those!

Speaking of David - he had a GREAT day at school today! He listened, was a good helper, didn't injure anyone, and even (sorry, tmi) pooped in the potty at school! That last one has been a big ordeal for us since he was just not telling his teachers he had to go. His only 'transgression' was not keeping his shoes on - obviously no big deal. He was rewarded with dinner of his choice - the always popular Mac and Cheese, followed by 'ice cream with cookies' (one of my Skinny Cow ice cream sandwiches). It was a good night.

Things that don't suck - Good David at school days! I am so so glad he had a good day with no hitting, or hiya'ing, or anything! Boys will be boys, but we get upset when other people get injured by our son. The afternoon teachers, especially, at his school are so good with all of their kids and understanding individual needs. Plus, David is in LOVE with one of them. Even at home, he tells me he wants to go see 'Miss Mamayah (Mariah)'. Uber cute to see his first crush. :)

Oh, and for those who don't know me on Facebook, I was on tv yesterday morning! http://www.tucsonmorningblend.com/videos/115503494.html

More grading now, so goodnight!

Tracy

2 x 2 Good news

Today was a good day. Started out a bit rough with David this morning and a little bit of a stressful am, but for both Kel and I - 2 bits of good news.

For Kel:

1. We knew that his tumor biomarkers had decreased from a phone call we received, but we didn't get the #'s. There are 3 'things' monitored by bloodwork for testicular cancer - AFP, bHCG and LDH. All 3 of these were high for Kel, but the AFP was the highest at 13,700 (7-ish is the highest 'normal' defined). We heard today that his first cycle of chemo this # went down by 85%!!

85%?! That is awesome! And that was only cycle 1. He had blood drawn again today and should know those results next week to see how much more they went down.

2. The doc actually put a # on the chance for needing surgery at 20%. It is a little higher than normal due to the size of the tumor in his back when this all started, but probably because of the tumor marker progress, it isn't too much higher. We also heard that the CT scan and decision should be about a month after the last chemo week, so mid-April.

Ok, going to add a 3rd 'good' for Kel - he handled today's chemo well. This time last cycle was his worst day, and today after he was done we went out to lunch (salads), I brought him home and he slept a little, and we were even able to go out to dinner tonight to celebrate the more 'good' (below). He is really tired, but that is also due to a lack of sleeping at night still (he was up at 3:30am, just cause ...). He is out cold again tonight.

One more good to add for him (and yes, Dad, at this point you can make fun of my math) is that his lack of tasting any food should be fully reversible!

My good's:

1. I was at my lowest weight yet - down 27 lbs overall! Still about 9 lbs to go for St. Patty's day, and I didn't do well today with Thai food dinner (my fave food), but I can make it!

And the best part ...

2. I was offered that job I was waiting for! They met today, voted, and unanimously wanted me! WOOHOOO!!! So excited - this is an assistant professorship, my own lab, more teaching at their College of Pharmacy - a great position for me. A few things to figure out for sure before we take it, but SO,SO, SO excited! I was a ball of anxiousness today waiting to hear too - my phone was constantly getting checked, but I didn't get the call until about 5pm.

To be sad now: I really wanted to call my mom and tell her about it as soon as I got the call, and it stung a bit that I couldn't. This is a major milestone for me, and something I've been striving for and working for some time. I am thrilled, and it made me miss mom. :( Just another of those 'firsts' that will be hard without her, I think.

Back to happy: Thai food is AWESOME! Great celebratory dinner, and they are so good with David at that restaurant (amused by the caucasian parents and then asian son, I think).

I have a ton of grading to do, since all of my classes just went through their exam cycle 1, so onto the sux/doesn't suck portion.

The doesn't suck is hard, because overall it was a great day. Kel's markers are dropping more rapidly than we knew, indicating the therapy is going very well. The job offer is great for me. a 20% chance of surgery is good odds for not needing it, and I am thrilled with 27 lbs!

The sux: Had a rough morning with David this am, probably more due to stress on my end. I go through this sometimes - get overly stressed and overloaded with work and life, and have to hit bottom before it picks up. My list of 'to do's' is too long to keep track of, and include needing to do laundry, dishes, clean the guest room for my mother-in-law's upcoming visit, write papers, schedule meetings, decide on a job (great thing, of course), run lab, teach, grade, etc... oh, and be a mom and a wife too (that is the easy part). David wasn't great at school today, had a 'Hiyah' incident with his teacher where he pretended to do a karate move on her and punched her, and apparently poked another kid in the eye? Don't know how to teach an almost 4-year-old how to understand not to hurt others. Any thoughts? He gets the aftermath threat of: would you want me to punch you there? or poke you in the eye? But he doesn't get that upfront.

Back to grading, Goodnight for the end of a good day!

Tracy