Monday, January 31, 2011
Sunday, January 30, 2011
Today’s post isn’t about Kel – he is doing ok and the next round starts tomorrow. I will post about how he is doing all week, I promise.
Today is exactly one year since my mother passed away – somewhere between 7 and 8pm PCT. This is a rambling remembrance of Dena Sharon Baker David, born 7/31/49: wife, mother, and friend to all.
My mother was many things in her life. She was a student, a teacher, a tutor, and I am sure many more that I do not know. After she passed away I found her diary from 1966-1968-ish, so I can add that she was also a boy crazy teenager then. It is kind of fun to read actually – and on the last page she lists meeting my father on 10/11/68 at a Brandeis Mixer. Dad, it looks like you won her heart over a whole host of other boys – I counted at least 12 or 13.
Mom could make a friend of anyone she met, and, to my frequent embarrassment, she would try to do so wherever we were. If we were in a line at the supermarket – she would strike up a conversation with anyone within ear shot. At a gas station 1000 miles from anyone we knew? There she was, talking again and making everyone feel like they had been friends forever. I was always embarrassed by my ‘nosy’ mother growing up, but I saw later in life how she wasn’t being nosy (ok, well, sometimes she was), she just loved people and sharing stories. Mom was quite the story teller too, and talented with making real life into a tall tale.
Although she had two kids born to her, she had far more than just Jon and I that considered her a mother. She lent an unjudging ear to any in need, a house to crash in when needed, and a safe haven for all. Long after Jon and I had left the house and even started our own families, she would keep in touch with her other ‘kids’ and keep track of how her extended family was doing. She knew what was going on with many of my former friends better than I did.
My mother wasn’t perfect, as none of us are. She had her downfalls too – I already mentioned the embarrassment she caused her daughter as she would talk to all. She was also a terrible singer. I mean terrible. Ok, she could sing one note alright, and as long as the song was monotone in that one note she wouldn’t hurt your ears … But she tried. And I think if it wasn’t for my laughing at her, she would have tried more. For some reason, David LOVED hearing Nana sing. Tone deaf and off key, his favorite song was ‘Wheels on the bus’. She could never remember the words to songs either – so imagine an off key, words wrong, rendition of … hmmm, anything really. But David loved her to sing, and when she forgot the words, she would just be creative. I think I mentioned the ‘Porn’ on the bus already. But she tried. And for her kids, or her grandkids, or her friends, or her husband, she would never stop trying. Not just singing, but anything we needed – she was there.
I can’t believe it has been a year already that she is gone. She and I talked everyday, and I miss that. I miss my mommy when I am sick, and I miss her when I could use some venting about parenting, and I miss her kvetching that I do too much and need a break, and I miss hearing her and seeing her and hugging her and kissing her. She was only 60 years old when she died – old enough to live a good life, but far too young for it to end.
It was David’s birthday when she was diagnosed with stage 4 (i.e. metastasized and aggressive) endometrial cancer. A day of celebration here in Tucson, until Dad finally reached me. Even though she only had a prognosis of a few months, mom lived for 21 months. And the majority of it was good. She laughed a lot, cried a lot, and got to love a lot. David and Danelle and Steven got to spend time with their grandmother, and I am so grateful that David got to know and adore her. He may not remember later in life, but I will.
And we with her on that fateful day in January. Family and friends made it in from far and wide. Mom waited until Jon came in, and even in her delirium she recognized him and raised her hand to hold his. And then she waited until Jon and Dad and Kel and David and I left to grab some dinner. While Martha and Pookie stayed with her, she slipped away. Her pain taken away, and her memories with us forever, Dena Sharon Baker David was gone from this world.
We will love you always mom.
Friday, January 28, 2011
Thursday, January 27, 2011
To be more specific, I have had a recurring dream lately. And for some reason - and both Kel and I have noticed this - I (we) am (are) remembering my (our) dreams more vividly. This is not a hard one to figure out it's meaning, definitely no Freudian mind needed, but I thought I would share.
First, for those who know Kel, and not me per se, I have been doing martial arts and generally butt kicking for a while - a little over 10 years. That has diminished since adopting David, but I do still teach a self-defense course once in a while (including on this coming Saturday). This is relevant, I promise (well, not the Saturday bit).
In my dream I am being attacked by some unknown, unnamed assailant. Someone pretty strong. And they are beating me up. I think the 'how' varies - punching, strangling, something along those lines.
I try to fight back. I try my darned hardest to kick butt like I know how to do. And in real life I am pretty strong and a pretty good butt kicker. But in this dream, all I can do is basically b*$ch slap my attacker as I get my butt kicked. Hard. Nothing I do stops the attacks. I am completely ineffective and useless.
Like I said, not hard to figure this one out, right? Clearly the attacker is cancer - Kel's in particular, or Tahoe's, or mom's just to cover this past year, or all cancer ... your choice. And obviously I feel like I am doing nothing and getting no where despite any an all skills/knowledge I have. Clear as day, got it. But it is an exhausting dream! Really, I wake up spent from losing an imaginary fight that takes all I have.
I told Kel this dream tonight and he said to give my attacker a ox jaw to the throat. Not sure what that is, but I will see what I can do.
The last round of chemo for this first cycle REALLY knocked Kel for a loop. He had the exhaustion again - and like Christy commented the other day - the words 'fatigue' and 'exhaustion' just don't seem to encompass what chemo does. He probably slept for 15+ hours again, although on top of it this time he felt like he had the flu with aches and chills and the works. It was a little better by later yesterday afternoon, which was good because he had to watch David (or, at least supervise David playing on the iPad) while I taught.
Unfortunately with all of that sleeping during Tuesday night and most of Wednesday morning there was barely any sleep last night. But he went to work today (took yesterday off) and pushed through being tired. I think he is asleep now - I haven't checked on him too much (been working and trying to give him some peace and quiet). Hopefully he can reset his schedule.
Cycle 1 officially ends this weekend. Then he starts it all again on Monday. Cycle 2 will be chemo daily from 1/31 - 2/4, then again on the 8th and the 15th. See Ahmann again on the 15th, and start again with cycle 3 on 2/20. Such fun!
Just have to keep chanting the mantra - this is a cure, not just a treatment, this is a cure.
I still need that personal assistant. Can't remember all of the stuff I need to do at work, at home, at other work, teaching other class, and at other work. Maybe I just need a mind control device? Something connected to my brain that jots things down for me and automatically crosses them off the list when they are done? That would be WAY cool.
Otherwise, I am forgetting far too many things. And doing others against some tight deadlines (meaning they aren't done until the last minute). Oh, well ... I am used to it. Downside of being a workaholic who can't say no and generally loves what they do, right?
It is getting late, so I will get to the Sux/Doesn't Suck portion of tonight's rant:
I am trying to be original, but falling short.
How about this - I suck for not writing more? Taking too many breaks? I know some of Kel's family reads this daily - or as daily as I write - so that they don't call Kel too often (btw, anyone can call as often as they like. If he is too tired to talk, he will let you know). So taking a few days off, I am sorry. Even if it is short and not insightful, I will try and write a quick note.
Things that don't suck - I am going to have to go with David. He has been really good this week - even the teachers at school are telling us that he has been excellent. His night teacher actually told me that when he stands up and takes a bow, which is adorable to watch, she has the whole class clap and say 'Good job David'. And for some reason since she has done that he has been a good listener, kept his hands to himself, everything. He still has a crazy amount of energy - but that is a 3.5 year old boy thing. He has mostly been good at home too, minus not wanting to go to bed tonight.
To summarize: I am on the 'sux' list (kind of like Santa's naughty list), and David is on the 'does not suck' list (Santa's nice list). Does this mean I have to get David more Chrismakah-esque presents?
To all a good night,
Tuesday, January 25, 2011
Today was the last chemo day of cycle 1 - a bleomycin day. We also met with the oncologist. Overall everything is going well for Kel. The oncologist was very happy with how he looked, how the pain had diminished, and even the fact that Kel's white blood cell counts are low since that means the chemo is the right dose (just have to watch out for infections - no problem with a 3.5 year old in preschool, right?).
On the whole, there aren't too many side effects thanks to the 'extra' care - nausea meds, etc. Today is actually the worst he has done. We got home from chemo/appt, after picking up David, at a little after 5pm. Kel sat down on the couch and almost immediately crashed. He has been up for a few minutes since, but almost 5 hours later he is in bed and this is the hardest the nausea has hit him. Hopefully he will feel better during the night, but right now he is pretty miserable.
This too shall pass, but poor Kel. :( Just have to remember - the meds are working, the tumor is shrinking, he is being cured as he feels like poo. That is too long for a mantra, though, need a better one.
Oh, and on the doc's scale, he is only down 7 lbs since his first visit - so good job eating junk these past 2 weeks to gain back 3 lbs! Except he hasn't eaten since lunch, so ... we will see tomorrow. Maybe he is down 3 more lbs again?
Second cycle starts next week, and pretty much mirrors this one, minus an appt with the urologist in the middle. Doc said that the first cycle is usually the worst, mainly because you don't know what to expect, and that while the fatigue may get progressively worse with each cycle, overall he doesn't think Kel's side effects will be too bad. That is good. He just gets to sleep for 9 out of every 21 days. ;)
Now if only I could get Saja to be that lacking in energy, we would be in better shape.
Nothing on my end - haven't lost it too much with David again, but with my teaching he isn't with me for a few nights, so that may help. He was good tonight - nice and quiet for Daddy (didn't hurt that we watched two Dinosaur Trains and one Cat in the Hat episode), and we did some drawing upstairs.
I have some work to do, but should be able to join the rest of the family soon in bed and asleep.
Friday, January 21, 2011
Ok, so with the holiday on Monday and chemo on Tuesday, it may have been a little cheating to call it a work week, since he only worked 3 days, but they were 3 x 10 hr days. Probably better for him to ease back into work.
He is in a pretty decent amount of pain again. It may be from the sitting up at work, rather than the semi-reclining he had been doing at home, but his pain is definitely back more and he has to take the meds a bit more often again. That was the first thing he did when he got home from work tonight. :( Poor Superman.
This weekend doesn't have much planned. Kel will try to take David to karate class while I teach tomorrow morning. He gets to sit in the yummy bakery next to the dojo and enjoy their pastries - I am jealous! David will get to wear his gi for the second time - it is adorable. I will try to get Kel to take pictures and put on FB.
Another added bonus is that the 'controlled environment' of kicking and punching at the dojo may get David to stop doing that at home? Or am I dreaming?
Sunday David will get another playdate with his friend Doyoon (and Doyoon's mom Yoon!). It will be the 4th weekend in a row, and the boys play so well together. They are only a month apart, and used to go to daycare together before both Yoon and I changed their schools (clearly not to the same one). Doyoon and Yoon will be going back to Korea next week, and they will be gone for a month, and I know David will miss his Sundays with Doyoon for a while. :( They should be back after 5 weeks, and maybe we can have Doyoon come to our place for a playdate? We don't have the cool toys that he does though ... so much Star Wars!
Next week is another 'lighter' one for Kel with only one chemo day, and we will see his oncologist on the same day (Tuesday). Then that ends cycle 1 of 4. It will start repeating on 1/31. Fun, fun, fun ... or something.
I need to get some review in and then some sleep before teaching about the endocrine system in the a.m. I am going to have a bit of a rough time keeping all of the classes straight ... hopefully I won't try teaching bone stuff to my BIO202 class, or the circulatory system to my BIO101 class! I think I need a personal assistant to keep it all straight, and help take care of Kel. Know anyone who wants the job? The pay is terrible (just gratitude) and the hours are crap (24/7).
Hmmmm, what to choose - things that suck, or that don't suck? Kind of a blase day today, so not feeling much either way.
I went to ask Kel, and since he was playing with Saja, this is what I came up with:
Silly games with puppies don't suck - they are kind of funny to watch. Saja is a crazy ball of energy. A ridiculously crazy ball of massively destructive energy - just take a look at our massage chair, the holes in our couch, or our lack of lawn furniture cushions anymore (and while you are outside, please fill up the holes he is digging) - but just a pup. And he isn't dumb by any means, but he can be easily fooled by an arm moving under a blanket. The thinks this magic monster can jump all around the bed, and he just LOVES to pounce! It is a funny game, and the part that makes us laugh does not suck ... just have to watch out for him pouncing on you!
Thursday, January 20, 2011
Kel has been back at work for two days now on light duty. The first day was a training day for the hostage negotiator squad, and today was at the station on desk duty. He has been doing alright, although he is very tired by the end of the day, and in a bit of pain from not too comfortable chairs, but I think he is happy to be back at work and out of the house.
Last night was also my first night of teaching a 'live' course, so Kel had to take care of David ... in theory. David actually cooperated with Daddy and was such a terror at school that his punishment last night was dinner and then sent to his room by 5:30 (he was punching his teachers, scratching them, bit one of them, and knocked over another parent!). He probably went to sleep around 6:30 or 7, and was (mostly) out for the night! Knowledge of him being bad actually wears him out - maybe he fears the punishment? Not sure.
Tonight we made it to Applebee's to celebrate the 14 year thing, plus a few days. Kel had enough energy tonight, and he and David even got ColdStone after! Lucky fellas ... I had one of the 'under 550' calorie meals (as did Kel) and it wasn't too bad. I am definitely not on the Nutrisystem plan right now, but managing to do ok.
Not much else, just getting really busy. Teaching is getting into full swing with my third non-UA class starting on Saturday and I am working on writing papers, progress reports, managing students, projects, etc at UA. Lots going on, trying to take care of the house (which reminds me, I have laundry to do tonight), etc. But at least I got over the breaking point with David .. for now. :) So many people have made us dinners, and it has helped so much. The boys are being well-fed, and it is such a help to me to not have to cook every night and especially on teaching nights - thank you.
I am too cold tonight to be creative (could be the liter-plus of cold water I just drank ... ya think?), so nothing amazingly insightful. Looking forward to my father coming out in early February, although I am very sad I can't be there with him for 1/30 - the one year anniversary of my mother passing away from endometrial cancer. Hopefully Kel's mother will be here at the end of February (during my birthday week, actually, since that is a chemo week), and maybe his grandmother in March?
Going back to an oldie, but a goodie, as it nears the year anniversary for my mom ... Cancer Sux. All cancer sux. My mom was only 58 when she was diagnosed (on David's 1st birthday, actually), and made it through her 60th birthday before we lost her. I miss her terribly, and especially when I could use some 'mom' venting about David, or when I am sick and want my mommy, or every night when I sing to David because she used to sing in her terribly tone-deaf way. Dad - remember the 'porn' on the bus? (She forgot the words to the Wheels on the Bus, and on the verse that should have been the 'horn' on the bus, she decided it was porn).
And Cancer Sux in 2010 because it took the gentle giant Tahoe from us. She was the best 100-lb lap dog ever, and Kel and I both still use her name before we remember that she is gone and we have the Saja terror now. Tahoe wasn't even 10.
And Cancer Sux for Kel, who at 36 is actually a bit old to get testicular cancer. His spirit is high, and our hopes are up there too, but treatment is harsh and tiring for him. He is Superman to David, to me, and cancer will not get him. It is just his temporary cryptonite, making him more human like for now, and not indestructible.
So cold, and off to join Kel sleeping under the warm covers.
Tuesday, January 18, 2011
14 years later we were going to try to go back to Applebee's, and each have salads like we did that night (and sadly, we did and we both remember that) .. with a 3.5 year old rather than Stu and Steph, but Kel wasn't up to going out. Today was a chemo day again.
We actually both forgot. We celebrated our 10 year wedding anniversary this year, and we tend to forget the dating one. I kind of remembered the date when I was riding home to get Kel to bring him to a doctor's appointment. It hasn't all been perfect; we have definitely had the normal ups and downs of married life - getting used to it all the first year, me going through grad school, Kel going through border patrol academy and then border patrol life, our road to a family and to David - lots of trials and tribulations. I won't say I wouldn't trade anything - there are definitely some times we could have skipped - but I wouldn't trade my husband, or our life.
All this of me being nice, and I actually had a rough day? Ugh. It actually was a rough one. I officially reached my breaking point - both with David and in general. It is rough being patient enough for two with Kel being a little down for the count. David is a typical crazy almost four year old boy. He is great at daycare, and wreaks havoc with us at home (although he really is good with Kel being sick). This morning he was with me at the cancer center where I really could have used an extra dose of patience, and tonight he tugged on my last string at the library's storytime. It took all I had not to explode, and once we were done with his punishment (leaving the room for 15 minutes), I needed a break to go and cry. One of the first times I have cried in 3 weeks.
And it isn't David ... or Kel ... or the dogs, or work, or teaching, or anything in particular. It just all came together and broke me tonight. But it is ok. The pieces can be put back together, and it is nothing a little sleep won't fix. Or some chocolate? ;)
Enough about me, though ... onto the Kel report:
-Had the single chemo drug today. Was a quick infusion, although we were still at the cancer center for almost 2 hours. Wiped him out a little, and Kel slept for 1.5-2 hrs.
-He went to the first briefing with his new squad since the schedules just changed. I think that was good for him - got to see his new squad, see people at the station ... just good.
-Kel also had a follow-up with the urologist today. We got back the pathology report (finally), which held nothing unknown. Typed the cancer as a pathology stage II nonseminoma, but a clinical stage III due to the metastases. We learned more about the coming months in terms of the stent exchange, possible surgery follow up, etc. Kel's incision is still open and bleeding a little, so they took a look. It is ok, just old blood - looks like some clotting in the wound, probably all from the anti-clotting meds (a little counter-intuitive, I know).
-Work starts again for him tomorrow, this time with a hostage negotiator training day. Nothing physical, just some learning techniques, etc. I start teaching night classes tomorrow, so he will be in charge of David and the boys. If he needs help, the neighbors on both sides will be here. Wish him luck!
The nightly 'things that suck' - this one is easy ... reaching my breaking point. The flooding of too much emotion at one time is exhausting, and as usual I am tired. Going to get some sleep now, long day tomorrow.
Cancer still sux.
Monday, January 17, 2011
It was either that title or 'Hair today, gone tomorrow'. Aren't I clever?
As you can probably guess, Kel shaved his head today. HE took his hair before the chemo could. Cancer wasn't going to win that one. In solidarity, both his father and his father-in-law also shave their heads. Ok, so both of them have actually been 'purposefully' bald for years, or so they tell us, but it is nicer if they do it for Kel. A brother in blue, Alfonso, wrote that he was shaving his head (and a female officer offered to shave ... well, not her head?). Baldies of the world unite - I am just not one of you.
I would, though, for Kel, but I don't think he would like me to shave my hair. Usually the most I get away with is chopping off a foot or so when he leaves town for 5 months (border patrol academy). I think that was a surprise for him!
I offered to have David shave his head like Daddy and Papa and Grandpa, but he (being David) told me he wants hair like Mommy's, not Daddy's.
And speaking of David, and I promise I did not coach this ... when he came home from school and saw Kel's big bald head, the first thing he said was 'Nice Hair'! Very cute.
Today's Kel report:
-He didn't go to work today. It was a holiday anyway, so that was fine, but he was just too darned tired. He is getting plenty of sleep, but most of it has been during the daytime since he has been off from work for almost 3 weeks now and he has no real schedule. With sleeping many hours during the day, and falling asleep last night at 8:30pm, he was awake since 2am and tired by the time he needed to wake up to go to the station. He is trying to fix that tonight by staying up until now (11pm). Hopefully it will help him.
-He gained almost a lb back! Of course so did I (grrrr), but this is the Kel report, not the Tracy report. He ate a full breakfast yesterday out at the local Jerry Bob's (french toast, bacon and an egg), cereal for lunch, pizza for dinner, and I got him some yummy ColdStone ice cream! He ate all that and barely gained a lb. We'll see how he does tomorrow, since today was more pizza (I think for every meal?), plus the veggies I made and some more ColdStone.
-He has now had 3 non-chemo days, and is doing aright with that, but tomorrow is a chemo day. Just one drug though - the Bleomycin he will get every Tuesday through the first 9 weeks of this. Last Tuesday he came home and crashed for 15 hrs, but we don't know if that was the Bleo, all 3 drugs together, it being the 2nd day of chemo, or what ... I guess if it is just the Bleo we will find out tomorrow.
-He also has a urologist follow up tomorrow late afternoon. See how he is feeling, heeling, and overall doing with only one brass ball. Guess they will make sure he isn't so lopsided he is running in circles (I am stealing his joke)?
-Lastly, were he still on full duty, Kel's shift change would have been tomorrow, so Kel is hoping to go in late afternoon, but before the urologist appointment, to go to the first briefing with his new squad. He hasn't been too tired in the afternoons, so hopefully he can do it. Then back to work for real on Wednesday.
Back to work for me too - by the end of this week all 3 classes for this year's teaching load will be in full swing. It is going to be a busy semester, so I apologize ahead of time if I miss a night of reporting here. I will try not to do so, but well ... I am a blond and forget things sometimes. Even if my hair isn't too blond, as my father tells me 'Blond is a state of mind, not just a hair color'.
Things that don't suck for the night - Baldies! I am still not used to it, but Kel looks good bald! He didn't know what he would find under his hair - a birthmark like Gorbachev? Bumps? Scars from fights he didn't know about (I mean the fights, not the scars)? But his head is fine, other than a little razor burn from never being shaved before. He is a little cold though, and so he stole some beanie caps from David and I. I think the SpongeBob one works well ... (for pictures of the bald head and the cap - see Facebook or email me).
Off to get some sleep,
Tracy, the non-Bald
Sunday, January 16, 2011
Ok ... moving on to more important things - Kel's report:
-His pain is back, although not as bad and not as constant. He has had to take some pain meds since last night, and is uncomfortable again, although it is still worlds better than before
-We think you can actually see the mass in his back. He has lost enough weight (over 30 lbs, but 20 of that was with Nutrisystem before we knew about any of this), that his love handles are mostly gone ... well, at least on one side. On the side with the mass, there is a bump, but that actually may be the tumor? Vaguely disturbing (for Kel)
-Mainly, he is tired. We went out for breakfast this morning - a tradition for us on Sunday mornings, and Kel wanted to this morning. When we got back, he sat on the couch to 'digest' and was out cold within 5 min. He was up for a bit, and then back to sleep by noon through 2:30 or 3. By David's bedtime tonight, he was in bed again. Actually, I am struggling with David right now to get him to stay in bed and go to sleep, and Kel has been out cold again for almost an hour.
-He is going to work, light desk duty, tomorrow. I have the day off, so if he needs anything I can bring him stuff. He thinks he is driving himself, but we will see. Then Tuesday he is off again (chemo and a doc's appt), then working again Wednesday (hostage negotiator training) through Friday. Repeat next week. Then back to a week of chemo.
We had visitor's today who informed me he looks better than they thought he would from my posts, so if I can ... I will try to take a picture of him. He looks thinner, more pale, and mostly tired, but when he has some energy he is ok.
So, keep up the phone calls, especially to be sad with Kel about the Pats game (Butch), or to rub it in his face that they lost to the Jets (my father). For those in Tucson, visits are welcome. For those not in Tucson, well, visits are still welcome - just give me a heads up so I can pretend to clean the house. :)
I am running out of things that suck some days, so I will go with wonderful friends who have hours and hours long playdates with David DON'T suck! He had two wonderful playdates this weekend with his friends Ethan and Mollie (whom David ADORES) and today with his friend Doyoon. He played and ran and had a great time - and I appreciate the downtime for Kel.
Saturday, January 15, 2011
I must be ... too many of those around me develop cancer and I am the common link. As a scientist I have to consider the hypothesis that the lowest common denominator (i.e. me) is the causal link; q.e.d. I am a carcinogen.
Kel tells me I am just the facilitator - bringing my work home with me, therefore allowing for the development of cancer in those around me. Still, I am then aiding and abetting (to use words Kel is used to) the carcinogen, and just as guilty, right?
Ok, so maybe I don't cause cancer, maybe it just jumps to those around me - Tahoe's developed right after mom passed away, and Kel's probably started right after Tahoe was gone ... hmmm, so I must be an unafflicted carrier and those around me are just more susceptible?
Enough geeking out - a story:
Last night Saja and I were playing fetch with his favorite toy. I would get it from him and throw it down the hall, he would dutifully chase it down and run back with it in his mouth while jumping on the couch. Repeat ad nauseum. On what was destined to be the last throw of the evening, Saja ran down his toy, retrieved it and returned to me at full speed. Somehow he misjudged his jump and all 50 lbs of running/leaping dog collided with my face. More specifically, with my nose.
Scream of pain. Bloody nose (never had one of those before, to my recollection), swelling, ice.
Woke up this morning with a killer of a sinus headache. A decongestant wouldn't help - this was from swelling in my nasal passages. Thanks Saja. Headache got worse and worse, so I took tylenol, then Arthotec, then finally some Imitrex (I am a frequenct experiencer of migraines, unfortunately). Imitrex will always help my headaches, but wreaks havoc on my GI system with some killer heartburn.
There is a point to this story, I promise, just stay with me.
So head, better, but heartburn and stomach NOT happy ... cut to just after lunch, and I officially beat Kel to the throwing up! :) He has had a week of chemo, a hellish 3 weeks of pain, cancer, and suckiness, but I get to puke before him. Sorry Kel. I thought of using his nicely decorated puke bucket (he had me get a big red bucket and he drew a poison symbol on it) but left that for him. :( Fun day so far (read with sarcasm).
Kel is doing alright-ish ... He is tired again, as expected, and feeling pain again in his back. No where near what it was before, and my best guess is a shrinking and 'softening' mass is just shifting around and compressing new places to cause pain. Fun day for us both, I guess.
David had a fun morning playing outside - Kel even joined us for a bit and sat outside on a beautiful AZ morning. Now David is having a playdate through dinner, and hopefully having a fun time. Out of all of this, David is seeing a huge increase in his playdates! Has another one tomorrow. Trying to let him play as much as possible, and for this weekend, give Kel as much quiet as possible - two for the price of one?
Kel and i just got back from a walk with the dogs to the park. Fresh air is good for him, and the park was close, but that was about it for him. For now he is back to football playoffs and enjoying his rest. Patriots don't play until tomorrow, but he can't wait. Go Pats!
On Monday Kel will try his first day back to work with some light duty. It is a holiday day for me at work, so I will only go into the office for a little and I can drive him to and from the station and get him home early if it is too much. So stay tuned for Monday's progress!
Today's sux - The beast, Saja. As our friend Brian pointed out, he managed to take out both Kel and I in a single week! Technically Kel actually punched himself in the eye, but it was a 'playing-with-Saja' related injury, and he did smash into my face too. Have to love the puppy energy, and the beast is passed out from play exhaustion right now, but OWIE!
Friday, January 14, 2011
The end of this first week is tough - Kel is feeling quite sub-par and run down. Lots of sleeping (which is good), not much eating (not so good ... he has lost probably 8 lbs this week?), and overall 'ugh-ness'. I am working from home his a.m. to keep an eye on him. Most of this may be due to the chemo making him anemic, although not sure if that would be this fast? (Dan, any ideas? ;) ).
Going to be short this am, because I will post again tonight about the first week.
Things that suck: this chemo regimen. It is a harsh one.
Things that don't suck: this chemo regimen. It is a curative one.
Wednesday, January 12, 2011
Other than high blood pressure (anxiety that his conciousness isn't acknowledging, but his unconscious mind is? What would Freud call this?) he is doing fine - ate today, even played with David a bit (was out cold last night, so no David time).
Tomorrow starts again bright and early with an 8am start to chemo. Too early to take David to school (given the time I will have to pick him up at night), so it is a little bit of 'Take your son to work' tomorrow, and to school before nap time. Now all I have to do is wrestle the iPad from Kel and that should work fine ... ;)
Not much else, other than extreme exhaustion. I thought I was going to fall asleep in the car this morning! Ok, maybe not quite that bad, but close. We are back to sleeping in our own bed, so that should help both of us.
And for the pain report ... while he can still feel the pressure in his back and on his side, he is doing awesome! Hasn't really had to take anything for that ... just for his arm because he slept on it wrong, or so we think. Woohooo for chemo shrinking 5 inch masses! Gooooo chemo!
I am tired now, so going to end with the following, which is really a ppppbbbblllllttttt for my father:
Ignore the following unless you are Ira David ... just me being bratty to my father, the 'Jenuine Doctor' (lawyer's can't spell). I am a Phony Doc, so I guess I can't throw stones, right?
From my father "you need to go back to arithmetic class. The entire chemo regimen is 9 weeks + 5 days, or 68 days, of which 3X5 + 6x1 = 21 are actually chemo days. Subtract 3 from each after today. Guess you picked the right major."
Ok, Dad, but for the 9 weeks + 5 days = 68, evaluation (which was my marker) is still 2 more weeks after that for 82. So as of today - to evaluation - 3 down, 79 to go. For chemo there are (4*5) + 6 = 26, minus the three we have done = 23.
Apparently my doctorate does include math skills when tired and worn out?
And finally: things that don't suck - my father, even when he doesn't trust my math, and is not so good at being sappy ... but for being a great support, and for caring so much about us all. I mean he must, he is even reading a blog?!
Tuesday, January 11, 2011
The excellent news: Since his first treatment yesterday, Kel has barely needed to take the pain meds!! He had been taking them every 3 or 4 hours since he was in the hospital, and since last night he has only taken 2 doses and said his pain is fine right now. That is a HUGE improvement!
The good news: While he isn't eating much, Kel is eating something. He had bread this morning and some soup when we got home. Then he even told me he had a craving and he had 2 bowls of cereal! Hours later it has stayed down too. ;)
The harder: So far, the biggest side effect is fatigue. We got home, Kel ate, and then was out cold for the next 2 hours. He just woke up again, but I don't imagine it will last long. He has a little bit of altered tastes too, with tasting vinegar, but very minor.
Overall he is doing VERY well, taking all of his medications and we think the disappearing pain is a good sign! Either it is psychosomatic (all of the cancer is in his imagination? Don't we wish), or this is VERY responsive to chemo and the mass in his back is already shrinking.
For me, a lot of chauffering today. I drove David to school, came back home, got on my motorcycle (and dang was it cold this morning) and went to work. Came back home at lunch, grabbed a car and Kel, took him to chemo, and went back to work. Since his chemo started late, I left work at 4:30, went back to get David from school (which is close to home, so about 10 miles from work), took him to the neighbors so that she could take him to storytime at the library with her kids, went back to get Kel (about 5 miles past my work), and then came home. Phew! Would have been great if all of this could have been done on the motorcycle - would have saved some gas. :) Start again tomorrow.
So, day 2 done, only ... hmmm, need a calendar ... a lot to go? Until evaluation for needing surgery there are 82 days-ish (4 cycles of 21, minus the 2 already completed). Of those, 24 are chemo days, so maybe that should be the countdown. 24 chemo days to go!
For tonight's 'Suck': I pick fatigue. For all of us. Definitely for Kel - he is beyond exhausted (could be the wait he had for me to pick him up since he was done earlier than I expected? I am such a bad wife ...); I am tired too, but have no excuse other than being back sleeping on the couch downstairs and me not trusting Hudson not to attack Saja in the night (he is an evil dog); and I think David is tired too. Although you wouldn't know it by the crazy running around that he does.
Things that don't suck tonight are (in general) how good David is being! He had an incident with scratching at school today (both being the scratcher and the scratchee), but overall he has been a very good boy. And when I took him to the neighbor's house and told him I was going to pick Daddy up from the doctor's, he was sure to immediately tell me that he was going to be a good boy for Anna (neighbor), he would listen, and listen, and listen to Anna! I think, unfortunately since we went through the chemo-schtick with my mom, he is used to the careful around sick people bit. Wish he didn't have to experience this again ... or at all ... but I am definitely grateful for his laughter, childish self (in a good way), and his love for us all.
Definitely off to sleep now (after only a little bit of work),
Monday, January 10, 2011
Ok, during my fight with cancer today I threw a couple rght hooks and an uppercut. Tomorrow I think ill fight dirty, shot to the nads (B and B "Buzzcut" lol).... I'll probably give it an ox jaw to the throat and kick him while he's down just to be sure.Today started out with both of us being a bit nervous and not knowing what to expect ... mainly Kel, of course. We drove past the media circus going on at University Medical Center and went to the Cancer Center. They seemed to have lost his lab request, but took a 'rainbow' approach - took all of the blood vials, so that all types of bloodwork could be done. Kel was called into the room a little early, but since it is so hard to get a needle to hit his veins, chemo ended up starting on time. I stayed with him until the first infusion started, and then I think he was a little tired of me pushing food on him and I was kicked out. I went to work, and he called me all done 2.5 hours later.
We are home, Kel is mostly doing fine (save for an incident playing with Saja where Kel punched himself in the eye ... see Facebook for a picture). Says he is feeling a little something, but not sure what, and not nausea specifically. The staff at the cancer center are great - gave good explanations, take excellent care of their patients, and are even funny! The week should get progressively harder on Kel, but he is off to an excellent start. He even went an hour longer without his pain meds!
David is stomping around upstairs with me, Saja is jumping on David, all is normal for right now. Even one of my teaching semesters has started! Going to be a busy few months. :)
Not much wisdom or venting tonight, but for Kel I am going to end with a 'what doesn't suck': Day one of chemo hasn't sucked. Went by fast, Kel is doing ok, and his positivity will get us all far!
Sunday, January 9, 2011
Chemo starts tomorrow, and although the worst of the pain is over for now (from surgery), the miserable times are just about to start. This is an especially rough regimen of chemo drugs, and we don't know how Kel will do. We are hoping for the best, but expecting the worst (are you gonna drop the bomb or not ... to quote 'Forever Yong' by Alphaville), and only time will tell. Tomorrow shouldn't be too bad, but ask me by Saturday.
Thankfully, we have wonderful friends who will have some great playdates with David this weekend on Saturday and Sunday so that Kel can be miserable in solitude. Now if only Saja had friends too - that is one crazy pup. I wonder if doggy daycares have Saturday hours?
With the recent tragedy and atrocity in Tucson, our (Kel's) miseries seem so routine. Just goes to show you how everyone's lives can change in an instant from either random lamentable cancer (thanks for the new word, Jon), or crazy, stupid people who open fire in a crowd of people killing 6, including a 9-year old child, and seriously altering the lives of 14 more.
Some parts of life just suck; some we can deal with, like Kel's cancer, and some are unfathomable. The depths to which people will go to hurt another sux, and the lack of being able to identify or stop such people can leave us feeling helpless.
I know yesterday's shootings have really upset Kel, especially when he is charged with public safety and knows not how to avoid such terrible acts. Not that all places other than Tucson are better, because crazies are everywhere, but Tucson does seem to be a magnet for terrible events since we moved here: Officer Eric Hite a few years ago, and this event stand out in my mind the most. Kel deals with the worst parts of town everyday on the southside of the city: drugs, gangs, homocides, rapes and domestic violence. He tries to make a difference everyday - keep the streets more safe and protect the innocent. But he can't do it all, and this, more than the cancer, is upsetting.
I wish I could make all of Kel's owies (mental and physical) go away the same I can for David: a kiss from mommy and maybe a little ice. Restore his faith in the good of people, and take away his pain.
But for now, all I can say is some things in life suck, and to dwell on the suck forever won't change anything. So grab hold of the good, of the love, and of the hope ... and to steal a phrase from an email from my cousin Barbara today: F#& the suck word, f*@k the cancer.
All my love, and hope,
Friday, January 7, 2011
Met with the new oncologist and a heme/onc fellow at the UMC North Cancer Center today - nice place with great services. We were there for 3 hours, which was a bit exhausting for Kel, especially since he was in a lot of pain. Got new script for other pain meds that he can take more often, and I will pick those up soon. He also begins a few meds over the weekend in preparation for chemo beginning Monday.
The chemo schedule:
M-F infusion of Etoposide and Cisplatin.
T infusion of Bleomycin
T infusion of Bleomycin
T infusion of Bleomycin and F/U appt with oncologist.
Repeat 3 more times, for a total of 4. However, 4th cycle will not have bleomycin.
During whole regimen, Kel will be having bloodwork to check for progress via biomarkers (AFP, bHCG and LDH) as well as side effects (myelosupression, kidney function, and anemia).
After all 4 cycles are done another CT scan will determine any residual disease. If there is still a mass of any kind left (namely in his back), then surgery to remove it. If it is more tumor rather than scar tissue, then more chemo again to follow.
In general cases of testicular cancer treated with chemo this (meaning surgery and more chemo) happens about 15% of the time. Chances are a bit higher with Kel because a) the mass is so large to start and b) his disease has already shown itself to be aggressive by being so large and presenting so suddenly, indicating a rapid rate of cellular division and higher aggressive nature.
We then had to get his blood drawn to check for clotting factors - I still have to give him shots of Lovenox 2x/day - then drop off scripts and then finally home. We were only gone for 6 hr, but Kel spent a lot of that time in pain, and is exhausted.
So: today's things that suck - everything (minus really good doctors). We haven't even really started any treatment and it all sux - it is all so painful for Kel, and tiring, and the worst he will feel is yet to come. The pain should abate in week 2 of treatment, hopefully, but it is constant and intense for now. He is barely able to find a good spot/position. His golden hour(s) when the pain meds kick in and he can move around is getting shorter and shorter. I am exhausted from today and can only imagine how devastatingly tired he is.
The cancer sux; the waiting sux; the inability to help really sux. All I can do is chauffer, wait and watch ... that sux.
Things that don't suck - Kel. In as much pain as he is in, and as miserable as he feels, he can't wait to get started and get a move on getting cured. His spirit is amazing and inspiring. He (and we) are confident that treatment will go well and hope that chemo will be all he needs and all of this will be over by the end of March. That would definitely not suck.
I was told by Kel that I have to end each post with something that either does, or does not suck (although I am getting tired of that word, so any alternatives are welcome):
Today's ending, because today just really took it out of us, is a 'suck':
Not having the boundless and endless energy of a 7-month old puppy sux, because Saja can take a lickin' (just see how Hudson treats him) and keep on tickin'.
Thursday, January 6, 2011
Also, I finally found the video of David's magical three year old curing capacity on youtube ... it loaded sideways and the volume has to be turned up to hear David (sorry), but here it is: http://www.youtube.com/watch?v=Aztbt4cFHDQ
Tomorrow we meet with the oncologist to review the treatment, etc. Looking forward to getting everything started and on its way to a cure. One day closer to this being all gone. Woohoo!
Nothing insightful, new, or meaningful. Just a whole lot of tired - Kel doesn't sleep so well at night since the pain wakes him up for a few hours, which often wakes me up (no big deal). So we are both tired, I am behind on getting ready for the new semester, but will make it all work somehow.
I am, however, missing my laptop with the monitor destroyed by the airline during my trip to and interview at Ole Miss ... would make it easier to work while spending time with Kel. For now I don't want to spend too much time upstairs on the computer to work and be away from him (like I am doing now). He thinks I am silly, but I just like being next to him now, making sure he has whatever he needs and yelling at him to take his meds! :) Ok, not really on the last one anymore since he has become a better patient.
Signing off for the night. Today totally didn't suck, thanks to the wonderful officers and friends of the Tucson Police Department, and especially the members of Kelcy's squad.
Thank you, and good night,
Wednesday, January 5, 2011
Not much going on today or tomorrow, although his squad is coming over to have lunch with Kel - they are bringing him BBQ. Should be great! Kel will be ecstatic because I hate BBQ and generally won't go to get it, so he doesn't get to eat one of his favorite foods often. Being married to me must suck? ;) hopefully not ...
Tonight we did try to recapitulate the cuteness of David. The other day, and this may have actually been before we knew it was cancer, when we thought Daddy was just in a massive amount of pain, David told us that he had grabbed the owie from Daddy, threw it outside and made it go up, up, up and Daddy was all better. It was uber-sweet. We tried to have him do that again on video tonight, not quite the same but still cute, and I tried to load it on youtube from my phone. Can't tell if it worked or not, but if I can find it I will post the link. David curing cancer with his magic three-year oldness definitely does not suck.
Boredom and waiting has seemed to set in for Kel. He has not done a whole lot over the past few days and we are both looking forward to starting something on Friday and more on Monday. Time to kick this cancer's butt! This stage III (a? not sure, should find out more Friday) nonseminoma (that is what he has, btw) won't know what hit it. :) Positive attitude will get you far, and although I will digress from positivity below ... Kel will beat this, of that I AM sure.
Tonight I am full of things that don't suck, but cancer still does. Strikes indiscriminantly, at any age (although normally older) and even if it is the earliest stage, easiest to cure cancer, the word alone strikes fear. Sometimes it is treatable, and sometimes it is not, and although we all (cancer researchers) work very hard everyday to figure out more causes and more treatments and more options and safer treatments, there is a lot we don't know and can't do.
It is frustrating, maddening, saddening, to have SO MUCH cancer around and to feel helpless. I can explain what is going on, and what the treatments are and what they do ... and that may help ease a patient's mind, but it doesn't take the cancer away. It doesn't treat the condition with less toxicity. It doesn't do jack.
I told Kel yesterday I would take 1/2 of his cancer burden from him to ease the pain .. we are planning the first ever tumor transplant, because I just want to take his pain away. Take his cancer away. Take all of this away. But for all of the schooling and work and research, all I can do is get him some soup, let him know we love him, and watch while he suffers. Not having magical three-year old curing powers sux.
Wishing I was 3 again,
Tuesday, January 4, 2011
Sorry, really tired, not very insightful.
Kel had an ok day - showered again (thank goodness), even left the house for a while. It was to go to the primary care doc's office to get more percoset (otherwise had last dose today), but still - out is out. The pain is mostly from the tumor in his back by his kidney now, surgery and 'blockage' pain are better. For the blockage (and he is sooooo gonna hate me for this one), you know that scene in 'The Wedding Crashers' where they main characters put saline in the douchebag boyfriend's drink? The effect is exaggerated, but true. Saline will .... hmmm, how do I say this nicely ... enhance movement through the gastrointestinal tract? :)
I met Kel's will-be oncologist today too: Dr. Ahmann. Was visiting my friend and colleague Dan who is in the office next door, so Dan was nice enough to introduce us and I am very happy! Kel will meet him on Friday and learn more, but I find him reassuring, positive, and most importantly knowledgeable.
I know most MDs should be, and everyone we have dealt with for Kel's case has been great (minus one heme/onc fellow), but that is not always the case. The doc's for my mom sucked ... one even asked my father to not allow me back in the room. Guess my knowledge and ability to read scientific literature (you know ... half of my job) scared the old man? Good old dad told him to shove it. :) MDs who don't want to give their cancer patients the best care suck, but thankfully none of them are in Tucson.
I really am rambling tonight, and have to go get pain pills for Kel when he needs them tonight. So I will end with what I learned for his therapy to come:
We meet Dr. Ahmann Friday am for the initial appt. Kel will start with allopurinol to pre-emptively deal with any negative side effects of a tumor shrinking too fast which can lead to lysis (all of the intracellular contents released into the bloodstream).
Kel will be on a regimen of BEP: bleomycin, etoposide and cisPlatin with E and P being infused over 4h/day each day next week Monday-Friday. B will be given next Tuesday and the one after (I think). Lots of anti-nausea meds and hydration too. Might not be fun, but Kel can work light duty the off chemo weeks if he wants.
This cycle should be repeated 3-4 times.
I saw a post on some testicular cancer website about Vitamin E helping with the peripheral neuropathy caused by the chemo ... looked into it and the NCI actually ran a Phase III double blind clinical trial confirming this. So grabbed the right dose (400 mg/day in case you want some) and started Kel on it today. He will stay on that every day until 3 months post chemo.
Tumors so large they compress kidneys stomach, spine, etc really suck ... just ask Kel.
Thanks, and good night.
Monday, January 3, 2011
For the pain meds, narcotics (percoset) may work well for the pain, but they also halt any progress through the GI track, which in turn enhances the pain. Poor Kel has been on this stuff for at least a week now, and is more in pain from the 'gumming' of the works (Kel, don't kill me for writing this. Just remember, at least for now I can outrun you!) than from the surgical pain. Substituting one pain for another and not getting relief from the former due to the latter? That sux.
On the other hand, how much of a great PR campaign would it be for Apple to give a new iPad to all cancer patients? The amount of time he is spending hanging around now, plus all of the chemo infusion time? It would be an awesome distraction for them - movies, music, games ... the works! Thankfully we already have one, so we just need to load up on cool new apps before he begins chemo next Monday, but still, I think I will write to Apple and pitch this idea ...
For the update on Kel part, other than above, he took a shower today! First one in 5 or 6 days, and he said it felt great, except for the walking upstairs to get in the shower part. He shaved too. Crashed for a better part of the morning after that while I went into work. This afternoon we had to take him for bloodwork to check on his anti-clotting meds to help with the thrombosis in his inferior vena cava ... meaning blot clot in the part of his circulatory system that returns blood to his heard. That was a tough one for Kel - car rides are painful, walking hurts, all around not fun. But he is resting again now.
Got some appointments set up today ... well, really just one but it is the important one. He will meet with his new oncologist, Dr. Ahmann (whom I have not yet met) on Friday and begin chemo next Monday. Let's go chemo! Kill the cancer cells. Gooooo chemo!
I never was a cheerleader in high school, but maybe now is a good time to start? May have to save the skimpy outfits until a) I lose more weight with nutrisystem ;) and b) Kel is cured of his testicular cancer. TMI?
As always, cancer sux, but I am taken aback by the outpouring of love from family, friends, Kel's brothers in blue, and the world. When it really matters, people are there for you, and the support is really amazing. Thank you all for the entire Brooks family. We love you.
Sunday, January 2, 2011
Our first night home was ok. Kel and I set up shop downstairs on the couch with the recliners and slept there. He was able to get in a comfortable enough position for the post-surgery discomfort 'down there', but not for the back pain from the main remaining mass. Coughing hurts him too, and the nodule in the lung is making that an urge. Can't win.
On the plus side, the crazy puppy Saja only jumped on him once! That didn't go over too well and I spent most of the night making sure crazy puppies and little boys didn't treat daddy light the normal jungle gym that he is. Exercise for me?
On that note, Kel is going to win at the weight loss game now. :( He and I started Nutrisystem together 2 months ago and both lost 20+ lbs. Doing great. But now he gets chemo weight loss, and I have to stay on NS? No fair. (I jest, of course). Chemo can be a great diet - mom lost a ton of weight, and her hair grew back straight too - maybe that is what I should do to get rid of the curls?
For now, lots of sleeping, but generally not very continuous. Kel is still in impressively good spirits and we are ready to start with the doctors calls, appointments, bloodwork and the general circus to begin tomorrow.
Cancer still sux.
Saturday, January 1, 2011
I started to think of a name and decided to be profound: Cancer Sux. Cause we didn't all know that, right?
I thought of Cancer in 2010 sux, but really (at least for me), it goes beyond that. This year alone has been a tough one - lost my mother on 1/30/10 to endometrial cancer (she was only 60), our beloved horse of a dog Tahoe was diagnosed a few months later with a splenic hemangioma and we lost her in May (she didn't even make it to 10), and now Kelcy was just diagnosed with metastatic testicular cancer on 12/29-ish/10 at the ripe old age of 36. He got to have an orchiectomy (remove the troublesome 'nad', as he says) on new year's eve. Welcome 2011.
We lost my grandmother Mo, aka Dorothy David in 1997 to pancreatic cancer - that was a tough one. Less than two weeks from diagnosis to her being gone. Wow, maybe I should try 'Pancreatic Cancer Sux', but really, all cancers suck.
Even before that, Mo had ovarian cancer, but she made it through that. And before we lost Mo, one of my favorite cousins, Marcy Lasky, was taken too early by breast cancer.
No wonder I became a cancer pharmacologist, right? Really, I think that just means I know too much about the how cancer sux and am working too slowly to do something about it.
Back to Kelcy though, since that is mostly for whom and about whom I am writing this. He has metastatic testicular cancer - sounds scary, and is, but as many of his med team has told us over the last few days: 'If you had to pick a metastatic cancer, you picked the right one'. Good job Kel! And you were just worrying about me getting a cancer with my crappy family history. Forgot to even think that it might be you, eh (sorry, sometimes I like to pretend to be canadian)? Had to beat me to it? Gee ... thanks.
And it all started with vague back pain for months, then bad abdominal pain and back pain for 2 weeks, went to the doc, had a CT scan - saw a mass in his back and 'poof' - lost a testicle. How our world can flip upside down in flash.
So, screw 2010: the year of losing to cancer, and welcome 2011: the year of curing cancer. Both Kel's cancer and for me to make some headway in a new therapy. If I don't have the impetus now, I never will.
Happy New Year.