Wednesday, March 30, 2011

Been a while

I haven't written much lately because there hasn't been much going on - Kel is done with therapy and the fatigue is getting better. His cold is still hanging around, but a little bit of nebulizing is helping his cough a lot.

On the upside, our old Jeep died and now we have to figure out a new car tomorrow or over the weekend. We knew it was coming, but this was a bit faster than expected.

I am giving a talk at the lymphoma group meeting tomorrow (see you there, Dan), and I have updated my 'Most Important Acknowledgement' Slide, incorporating the ever poignant 'Cancer Sux' just to show a few key influencers on my work (I don't have a picture of Joe Bizeau to include ... anyone want to send me one of those? Trudy? Kathy?). Sad how many in one small picture of a Channukah party in the 80s would already be lost to cancer.

I haven't been too imaginitive, so going to go with a mixed Sux - Jeep giving up on us 2 months too early - and a doesn't suk - Nebulizing making a BIG difference with the coughing ... Dad, you need to borrow it too?

David's 4th birthday is only a few weeks away, and Kel should be feeling a lot better by then, plus we will know where his therapy stands (done or more?) by then, so we are looking forward to mid-April! Now if only our federal tax return would show up before then ...


Sunday, March 20, 2011

Hard weekend

The end of chemo has been harder than anticipated. Kel has slept most of the weekend and is the sickest he has felt. Nothing concrete to describe, nausea, heartburn, fatigue that goes beyond previous experiences. No fun. Oh ... and short fuse (that is one I am reporting, not him).

We went to the movies tonight though, just he and I, and saw 'Paul', a comedy from the same crew as 'Shaun of the Dead' and 'Hot Fuzz'. While I found their other 2 movies more funny, this one was still enjoyable. By the time we left and got David, though, Kel was anxious to get home.

David was a GREAT listener, thankfully! Didn't throw a fit when I picked him up (he was among good play friends and having fun) and even gave Daddy his Spiderman toy - the most precious McD-find ever - to make him feel better while David took a bath. When we came downstairs to say goodnight after the bath, he took it back. But when he heard that it was making Daddy feel better ... he turned around and gave it back to Daddy. Almost made me cry. I am very proud of David tonight.

I am also a bit sad ... and this one is also from David. We were looking through many pictures tonight (he wanted to look at the few albums we have around). He didn't remember my mother as Nana, or Tahoe at all. It has been less than a year since we lost Tahoe and just over a year for my mother, but memories are fading for him already. So damn not fare.

Cancer Sux. It takes loved ones away from us and if we are old enough they stay forever in our minds and memories. But not for the young. The young, so in awe and love with their Nana, forgets a year later. And that hurts my heart. A lot.

I know Friday's post was happier, but today's is not.

Cancer sux for even when therapy is supposed to be done for Kel he feels worse than ever. We got him some iron pills today so he can produce more red blood cells, since his anemia is contributing to the fatigue. Hopefully it will help in a week or so. For now I may have to take tomorrow off to take care of him - he has some appointments. And I was worried about having too much sick time leftover when I switch jobs ... ha!

I am feeling sad, so we are definitely going with what SUX tonight, in bullet form:
-Cancer, that is a given
-Dashing the hopes of being done, i.e. feeling sick post-therapy
-Short memories of babes
-Gonna list cancer again
-Not being able to help, both because Kel doesn't let me (he is tired of me asking what I can do) and because there is nothing I can do.
-Non-transferrable Cancer ... at least we could split the sux part
-The end of Spring Break - it has been nice spending time with the family and not teaching 3 times a week on top of working my 50+ hr/week job

So many have it so much worse, and in the scheme of things this too shall pass. But for tonight I want to sink into a little sad hole and just go cry myself to sleep. We will be better tomorrow.

Off to be sad, which is ok,

Friday, March 18, 2011

In the end, the quiet dignity of it all

Maybe it is because today is Kel’s last day, or maybe it is because I have spent the week here, but I am coming to appreciate the chemo treatment rooms as a place of quiet dignity.

People come here to fight. To say Cancer is tough, but I am tougher (no grammar police – I know I should write ‘more tough’). They speak many languages, have all different types of cancers and treatments, but I feel a mutual respect between all patients and all visitors. We are all comrades in the same war, uniting over a common enemy.

We have been here all week and I haven’t seen the same patients from day to day. It is a sea of faces, of pain and fatigue, of hope and fear.

There is a LOT of sleeping, and a lot of love coming from the nursing staff. They are a wonderful group of human beings, full of compassion and humor, knowledge and heart. They have treated Kel well … minus a few extra i.v. sticks that is his own darn fault.

Right now Kel is getting the first of his last 2 drugs. He is sleeping from the Ativan. I am listening to a story being read to an older man by his daughter? Granddaughter? It is in Spanish, and I can understand a word here and there, but I am not really listening. It is just a nice story in a nice voice with a nice cadence, and it is helping Kel sleep.

Kel will have a ‘bubble party’ today for his last day. I will write more after it happens, but I think all of the nursing staff comes in the room, blows bubbles at him and wishes him well and gone. It should be a nice ceremony, and one for which I made sure to be here. There will be another short post later with pictures (now that I know how! Thanks Christy and Beki!)

I don’t remember such a ceremony for my mother, but maybe that is because she never really ‘stopped’ a therapy, she just began to not respond. I’ve heard of programs for kids with memory beads to mark the milestones they pass so that there is a memory and a story to be told. There is a GREAT group here in Tucson that works on that – called ‘Beads of Courage’ (; we actually had David’s adoption shower with them and it was a great time, and helped them make jewelry to sell to raise for their cause.

Tonight we will celebrate – Kel wants to go to Outback Steakhouse to get a steak. He is anemic and iron may help … so he decided on steak. Dad – can you ship a piecaken down? I request a peanut butter pie inside a chocolate cake … of course. Or maybe to make it a little more healthy a strawberry pie …

If I can get a babysitter set up, we will go to a movie on Sunday too. Anyone in Tucson free Sunday afternoon? J Then begins the waiting for just under a month until we know if all is done.

I am going to end his therapy on a high note and find something that doesn’t suck. It is Spring in Tucson, already in the upper 80s and 90s, and there are leaves growing on trees, and flowers on our vines. Spring here is beautiful and while so much of the country is still cold, living here and seeing rebirth is a wonderful thing – for the mind, body and soul. Kel commented on Spring being here and how nice it is to see greens. So today we end therapy, begin waiting, and enjoy Spring.

Much love to all who have been here with us, in mind, body or spirit, and helped Kel through the past 2.5 months. It is hard to believe it has already been that long and that most of his therapy is behind us (knock on wood). Thank you for the prayers, thoughts, hugs, food, and overall well being. He is doing so well because he is loved and supported.

With all of my heart and thanks,


Thursday, March 17, 2011

25 down, 1 to go

Short post tonight since I just took the last 1.5 hrs to do our taxes (but yeah for returns!!) ...

This week has been less harsh on Kel than the previous cycles - I would guess due to the lack of Bleomycin. He made a comment today about being less fatigued than before. Yeah!!

He is still anemic and sleeps through the treatments, but overall he is ok. We even ran some errands today looking for stuff to fix the car (little dings from parking a sports car over curbs, etc and we are trying to sell it) and went out to dinner at Mongolian Grill --- ugh, still full from that one!

One more day to go!! Tomorrow the nurses will have a little extra special 'ceremony' for Kel and I will bring the camera. There has to be some way for me to add pictures to the blog, so I really need to do so. Anyone know how?

Nothing sux tonight - finally filing taxes = money, Kel isn't too tired, David was ok (save a small potty accident) today, Saja didn't destroy the house ... what more can we ask for?

Wishing everyone a happy night-before-last chemo,

Wednesday, March 16, 2011

I am firing myself from keeping a blog

I am so bad at keeping one! I haven't written since last week and I keep meaning to do so. And this week I have no excuse - it is my Spring Break and I took the week off from work too so that I could be here with Kel. And I have been ... generally sitting around while he sleeps.

This must be why I never kept a diary - I am bad at doing it consistently!

So, I am fired ... in a few days anyway.

Lots to update about and for Kel:
This is his last week of chemo planned. There is a small, small chance that after we get the CT results in April that he might need more blah blah blah ... not gonna happen, so not gonna write it. He is 3 days in to his last week, overall finishing up his 24th chemo day of 26 total. Looks like he has 15-30 min left on today's treatment, gauging by his last bag of medicine right now.

The i.v. he has in now has been in since Monday, which is good for Kel. Some of the worst time for him is getting an i.v. line. This one has to come out today, since it is starting to give troubles, so hopefully the one they place tomorrow can stay in for one more day. His Friday appt is at 12 or 12:30, and he should be done between 3 and 4. I've heard the nursing staff has a little ceremony for the last days, and I will be here with a camera for that. :)

We met with Kel's oncologist last week. While his markers weren't quite down in the normal range yet, they had decreased by 90% again (this has been pretty consistent), and the big one was down to 36 (from 13700 to start). If the trend continues of 90%, he will be in normal range at next check.

Speaking of the next check, it is a little different from the previous schedules. There is one more week wait and a CT scan in there. The CT scan will be 4/13, bloodwork on 4/14 and the very important and anticipated results on tax day 4/15.

That reminds me, I still haven't done my taxes. Ugh.

So, on 4/15 there are 3 options ... I should say possibilities, because some of these 'options' I am not allowing. They are:
1 - all is done! The mass in his back is less than 1cm x 1 cm and he is just under maintenance monitoring.

2 - the mass in his back is a little larger, but less than 2cm x 2 cm, in which case he waits 6 weeks, another CT scan and then decide.

3 - not allowed, and only 1 in 5 chance - the mass is larger and requires surgery. From this, 60% of the time nothing more is required. And if there is still tumor (40% chance of the 1 in 5 ... so 8% overall) then more extensive surgery to remove lymph nodes and 2 more, different, chemo cycles.

Like I said, some of these are possibilities, but not options.

Kel is hanging in there, and doing alright, but he is, in his own words, 'Sick of being sick'. He got a cold this weekend on top of it all, and has been miserable with that. His cough is disturbing him, although it is getting better. Tea with honey seems to help a lot, so we have been making him plenty of that. He is still not sleeping well either.

The next month will be a lot of hard waiting, for all but especially for Kel. He has an appt on next Monday to (hopefully) schedule the removal of his ureter stent ... should be no more tumor compressing kidney draining, and the pain from the stent is worse anyway. A few other things to keep his mind busy, so we hope before we know it 4/15 will be here and Kel will no longer be sick.

He has been trying to see if his hair will grow back, and to date nothing, so hopefully some stubble will make him feel better in a few weeks. His weight has been holding steady and creeping back up (which is good for a cancer patient), and I know he is looking forward to getting that back on track too - with lots of Nutrisystem food waiting for him (the stuff I don't like).

I can't tell for sure, but I think Kel being sick for so long is wearing on David too. He misses his jungle gym daddy. He acts up sometimes and for no apparent reason ... ummm, both Kel and David do this, but I am referring to David ... hitting and kicking me, or just running away. When his world is back to normal I think it will help. He is still being good overall, just a few blips now and then.

Kel's i.v. stand is beeping, looks like day 24 is done. Today's sux are two fold: i.v.'s and sitting around in cancer centers making me snack too much ...

Kel's veins are REALLY rejecting all of the needle punctures. He was hoping the i.v. could stay in all week, and while 3 days was good it is coming out today. His anxiety will go up again overnight and tomorrow what he will dread most is the i.v. stick. It is coming out now, so on the upside he can take a shower tomorrow without a bag on his arm!

And sitting here for 3-4 hours a day really just makes me snack too much ... :( But I can deal.

Kel is up and ready to go, and I will write more tomorrow.

With love,

Tuesday, March 8, 2011

I have been chastised

For taking the week off. I am sorry I did not write more this week - it is the middle of the semester, leading up to Spring Break, so I have just been busy.

Kel had his LAST day of bleomycin today! While he has another week of chemo, it will only be 2 of the 3 drugs since bleo has a cumulative limit in order to avoid lung toxicity. Woohoo to being done with that.

As usual, his veins proved terribly difficult to access and required 3 attempts today for a 10 minute push. Then bleo knocks him out, and so Kel was tired driving himself home, and was asleep when I got home a little while later. It is almost 9pm now, and he is struggling to stay awake in order to keep his schedule tomorrow at work. He isn't feeling to well tonight either (bleo days are his worst) so going to sleep soon will be good for him.

On the upside, my father drove into town today, so Kel (and I) ate very well! Dad brought food with him, including a wonderful (and now famous) beef wellington for later in the week. Yum.

When Sue (Kel's mother) was in town, she and I were watching some outrageous food show and one thing we saw was a company that baked pies inside cakes. The one on tv was overloaded with a ton of frosting, but I mentioned the concept to my father and he has been having fun experimenting on how to make a piecaken (or capieke). He brought one with him - a nectarine pie inside a yellow cake with some chocolate wafers - and double YUM! Dad is so bad for my diet, but darn is he a good cook and baker!

Dad will be commuting to and from Phoenix (2 hr drive) for an arbitration or mediator training class and will go back home on Friday. It should be nice.

Not much else to report - David is being good and we even seem to have (finally) tackled night time potty training! Still a couple of accidents, but looks like we are done buying pull ups, which is a nice change.

We meet with the oncologist on Thursday morning, hopefully with the blood biomarker data, and schedule the last cycle. The CT scan will be scheduled for mid-April, and we will ask for that to be booked on Thursday. I think the waiting is going to be tough, since it will be a month of not knowing and waiting to see if all is done. The hurry up and wait act is a tough one to go through for anything, and it is especially so for cancer.

I have to go with Bleomycin sucking tonight, since it has consistently been tough for Kel to take. Those are the days with the most fatigue and some 'flu-like' feelings. It also goes under 'not sucking' as bleo days are done, since he has reached the max for limiting lung toxicity, but that only doesn't suck because the drug itself sux so much. On the upside, it does a GREAT job killing of the cancer cells. But Kel is wiped out physically, and somewhat mentally, from it.

Other not sucking is Dad's cooking (ok, well that is a mixed bag too since it sux for my waistline), David's being done with pull ups, and an upcoming Spring Break for me. The dogs are cutely (almost) cuddling on the couch right now too, fast asleep, so that doesn't suck.

Kel's exhaustion is contagious, and at 9pm I am struggling to not fall asleep. I promise to update on Thursday after we meet with the oncologist, but for now: Good night.


Tuesday, March 1, 2011

The curse of karma

Maybe I watch too much 'My Name is Earl', so I think of karma, but I believe that somehow the universe is evened out. Not so much like Earl that we get what we deserve, but more than good is tempered by bad and vice versa.

In terms of good, we have plenty - Kel's therapy is working well, according to his biomarkers, my new job, David is good ... our lives in general are really pretty good. Sue's visit was good too - great to have her around for a week!

It is also tempered by the bad. Obviously Kel wouldn't need any therapy if he didn't have testicular cancer. David isn't always good, Kel isn't feeling well tonight, and to make it all great, tonight our thermostat stopped working. Not the heater/a.c., just the controller.

Boy am I glad we live in AZ where it should only get down into the 40s tonight, but we have no control of heat, so it will get cold.

The home service company that we use will be here tomorrow am (after I call them to make sure they don't send anyone with a cold, or sick in any way). If Kel is feeling better, I will stay home and wait for them. But gauging how Kel is doing tonight, I don't think he will be up to working tomorrow.

When we were in Buffalo we had a money pit house - bought it from HUD and fixed it from top to bottom ourselves. So even though it was an 80+ year old house it was great. This house in AZ is only 6 years old, but everything is slowly breaking! The AC unit was down over the summer, we had that fixed, lots of small other things, and now, essentially, the heater! UGH.

OK, enough complaining about the house. Back to the important stuff: Kel.

Kel had another chemo day today. That makes 20 days down, 6 to go. As usual, they had trouble getting an i.v. line in today. It took 4 pokes and a lot of pain. I honestly don't know how they are going to make do with the next 6 treatments - it is VERY difficult now to get a line in for the chemo. When I got home from work, Kel was icing his arm because it was still in pain from the attempts for i.v.s.

Then he got bleomycin. Those have been some of his worst days, and some of his not so bad days. Today was in the middle. He is exhausted tonight (although he did stay up about 5 minutes longer than David), and nauseas again. Overall he feels, blah and sluggish. He told me that he tried to take the stairs at the cancer center 2 at a time up to chemo, and at the first landing he was tired. :( Poor Kel.

I am cold and tired, so going to get straight to the 'sux':
Breaking down 6 year old houses made with shoddy materials suck. We don't live in a KB home where I expect stuff like this, but it seems like lots of things just keep going south. Our AC unit has been on the fritz since the summer, even after replacing the capacitor, now the thermostat too. The fridge seems to drip, and we have to replace another flapper in David's toilet to stop the constant water running (or keep turning off the water supply). Strange to say, but I miss our old house in Buffalo because it was in better shape!

Hoping we don't get to cold tonight,