Narrow vision

Warning: This is a vent. I have been stewing for a few days and now that I am stuck on a plane for a few hours going home to see my boys I am stewing more and need/want to get this out. This is not about Kel or cancer, per se, just about how ‘stuck in their world view’ I have recently found a former friend to be.

Background: Before the newest of a series of cancer diagnoses, Kel and I were on Nutrisystem together and doing very well. We had each lost ~20 lbs in 8 or so weeks and were proud. His diet, of course, went out the window because eating 1400 calories a day of veggies and NS meals just doesn’t help the psyche when dealing with cancer. Comfort food does.

I did ok for the next few months. I don’t have the willpower to stay on NS alone, but I managed to lose a little more, provided my father wasn’t in town (see notes about the ridiculous deliciousness of ca-pie-kes.) But I am losing ground, and with the most recent bouts of chemo and knowing there is more therapy, I am reverting to comfort food and chocolate-y chip cookie goodness.

Nothing wrong with that, I know.

Not something to focus on now, I know.

But at the same time, I don’t want to undo the good pre-cancer … I kind of don’t want cancer to win my weight loss battle, ya know?

Cutting to the chase: I have a friend (mostly virtual/online, although we did meet a few years ago with a slew of other women going through similar non-cancer related stuff) who is a fitness buff. She has been through a lot and perseveres and I mainly find her attitude and motivation … well, motivating. So I reached out and asked this person for motivation (man, I need another word here – 3 times in 2 sentences? Oy) not for working out but for help with willpower to not eat cookies and just do better.

Her response? Cookies don’t help with stress (but wine does) – lift a barbell. Ummm, ok, but missing the point.

Now, I do believe that she has no idea what the source of worry and stress is in my life, and that is fine – I don’t expect everyone to follow my every move throughout life. I am not that special or noteworthy … I only expect most people to follow me. Just kidding.

Ok, so I wrote something back publically and then sent a private note explaining that between the teaching and working, David, the new upcoming job, wrapping up the current job and …. oh, yeah, that pesky cancer-crap, that increasing workout time wasn’t in the cards. I get to teach a self-defense seminar now and then, and maybe after the semester is over I can get to the dojo once a month to hit things, but overall, increasing beyond some walks – to quote GW, Sr – wouldn’t be prudent at this juncture. However, I can control eating better. Then I again asked, if she had the time, for some motivation (ok, seriously going to thesaurus another word … how about inspiration or incentive) inspiration to help keep me on my toes.

And I get … nothing. Nothing for days. Not even a baloney, full of platitude, I didn’t know about Kel, I am so sorry. Nada. Actually, I specifically get ignored and see notes about ‘if you aren’t willing to change your life for healthy then I can’t help you’, not specifically about me, really, but still there.

So, I de-friended said person, and stew. And vent. And stew. And with nothing to do on a plane (except write an exam in a minute) I prep a blog about it.

I feel better now, thanks.

Report about Kel: I don’t know, actually. I have been out of town since he started this chemo cycle. I checked in on him each day and got his report and my father’s report, but I really know nothing. He sounded ok yesterday, terrible on Friday, and ok on Saturday. He is sleeping a lot, which is good. He will be infused through late Monday night and should be released to go home on Tuesday. If/when he goes into work this week will depend on the post-chemo days.

The sux for today/the past few days is vented about above, but for more:

Not being in town for Kel’s first cycle with this no chemo was not fun for me. Being in Rochester was nice especially to see family and friends that ARE family, and although I didn’t make it onto the UR campus for a trip down nostalgia lane, the meeting went well (including my talk which went REALLY well). However, I was not a happy camper having to call to hear how home was going.

The next trip I take will be on an off-chemo week, and I will give myself less of a guilt-trip.

Yeah, right, who am I kidding. I will still guilt myself. It’s genetic – I learned it from my mother, and her mother and my father’s mother … although they really sent other’s on guilt trips, not so much themselves. Hmmmm… I will have to work on that.

(It is now many hours later than I wrote this, so I will write a second blog about Kel now)

Tracy

The trip ...

The guilt trip.

I have (according to those around me) been sending myself on a guilt trip. I hate being away from Kel while he is in the hospital getting chemo. I am a horrible wife. :(

I an in upstate NY for a meeting, and it was a good day at the meeting, but when I spoke to Kel this morning he sounded horrible. He was a little better later in the day, but has been sleeping the rest of the time. It is what is best for him right now, but I fear how he will feel worse for the next few days. My father, thankfully, is in Tucson taking care of David and Kel at the same time. Thank you, Dad.

The meeting, as I mentioned, has gone well. The talk I gave went REALLY well, and I heard that some of the other group were interested in recruiting me? Nice to hear. A little late, but nice anyway.

Then there was a nice dinner and some more drinks and even dancing at the hotel bar with some old friends and new friends. Of course that just adds to my guilt, but for an hour or so it helped me feel better and get a change in thinking and focus for a bit. Thank you.

I have one more day in Rochester and then back home on Sunday. Tomorrow I have brunch with cousin Randi, a party for a 1 year old with Kel's best friend (and my love) Tim, and dinner with Dad's college roommate Steve. I will spend the night at Tim's and go back home the next day.

But back to Kel ... I didn't talk to him much today because he wasn't doing well. He woke up to throwing up and a massive headache. After some meds and he slept more he sounded good. I called later, and he was sleeping.

David has (thankfully) been good at school and good for Dad - lots of Scooby Doo helps too. Thanks to Anna and Michael for lending us the new DVDs!

For tonight I am going to go with old and new friends deciding to get me off my guilt trip doesn't suck. Who knew scientists could be so much fun? A few minutes of a live band and dancing took my mind of everything, even for just a moment. Thank you for that.

It is midnight here in NY, so I need to get some sleep for a fun day tomorrow. Have a good night.

T

Central port or bust ...

Today was a bust. Kel was supposed to have his central port put in today to get ready for chemo on Wednesday with a few days of healing in between.

Small problem - they forgot to tell him to stop his blood thinner last week, so no port because the risk of bleeding was too high.

We thought and wondered about the drugs, but the message that was left on your machine specifically said 'if you are on blood thinners, stop taking them the night before". So Kel didn't take them last night, and upon check-in and getting changed for surgery mentioned this to the doc.

Uh oh, that is a problem. No clotting, no procedure. No go.

So, now we wait and try again on Wednesday still trying to start chemo that day. If not ... well, who knows. It will start later, Kel will be frustrated, it will throw off the schedule for those scheduled to come and visit (well, their dates can stay the same, but chemo won't be exactly those times), and this whole thing will just suck even more.

Sorry, I am quite melancholy tonight. Tired from making exams (still working on that), from the semester, from cancer, from nothing quite working like it should. Just ignore me ... this too shall pass.

I am down to handling things day by day. Maybe hour by hour is a better way to describe it. I can't even fathom how tough this is on Kel, although overall he may be handling it better than me most of the time. He just needs something to move forward. We just need progress towards the cure. UGH, I really am a downer tonight!

On the upside, David was good at school, Saja didn't destroy anything (knock on wood), and it was my last night of teaching in A&P (only exams left).

I leave in a few days for a meeting in Rochester, NY - which is where Kel and I met - and will see some friends and family. Unfortunately those are the same days that Kel will be in the hospital for chemo and I don't really want to go, but he is pushing me and my father will come and stay with David and watch Kel in the meantime. It is great to have the help and support of my father, although I hate putting him through taking care of yet another person so soon after my mother.

I am really whiny, aren't I? Sorry.

I will go to the sux section and hold the whining until another day:

Today sux. Lack of communication and instructions sux. Delaying treatment for a stupid error sux. Working until midnight sux a LOT, when the rest of the house has been asleep since 9pm (Kel included), but this too shall pass.

Just hanging on for now, riding the wave of suck until it passes and waiting until I can take a Krav class and punch something, anything, to get some frustration out.

Needing a hug,

T

Not a bad day ...

Going to start with an all about me part tonight ... I was honored at work today when I was given an 'Award of Excellence' for the University of Arizona's College of Pharmacy Research support. I knew I was nominated from a few weeks ago, but had no idea who had done it. At the awards ceremony I got to hear part of the letter written about me, and was given the letter to read later - a special thank you to my nominee Megan Carver for her wonderful words and kindness. From the bottom of my heart - thank you. You made this week a little better!

If only I could have also won a raffle prize ... a massage would have been awesome.

On the downside, my throat hurts and I am getting stuffed up. I am hoping, hoping, hoping that it is just allergies, but it feels like I am coming down with something. :( Thankfully for now Kel still has an immune system, so I guess this is not a bad time to get a cold, but UGH! And I have to travel next week to a meeting for work? I hope this is gone by then.

Back to the upside - that meeting is in Rochester, NY, where I went to undergrad and where Kel and I met. I haven't been there in years (ummm, 10-ish maybe?) and am looking forward to seeing it again, especially in non-winter time. Most of my time will be at the meeting, but I will have an extra day to see the town, see family and friends, and figure out how to get a garbage plate from Nick Tahou's back for Kel.

Artery-clogging yum.

Kel starts chemo again next week ... the day before I leave actually. I wanted to cancel the trip, but Kel doesn't want to burden me by changing my schedule. Ummm, ignoring the problems with that theory ... but he would feel better with as normal as a schedule as possible, so I am going. To help while I am gone, my father will come into town and take care of David. This will be the first time without Kel or I at home, so I hope he will be ok, and I am so so so grateful for your help, Dad.

In between the first and second cycle of the new chemo, Kel will have some bloodwork done. I saw his oncologist today (just walking through the halls at the University hospital) and he assured me that he fully expects a great response with just the first round. Assuming that to be so, the next 2 cycles will continue before re-evaluation and likely surgery. Kel's sister and father will be here for his 2nd cycle and we are so glad they are coming. It will mean a lot to Kel ... and to me ... and to David.

It is almost midnight and I took some NyQuil to help with the cold, so before I pass out a-la-Dennis Leary's 'Big N, little y, Big F'in Q'-style, onto the sux/doesn't suck portion:

Being honored at work definitely doesn't suck, especially when you get to read the wonderful nomination letter written.

But that is a little too much about me ... so for Kel, 2 sonoran hot dogs for his lunch from two great brothers-in-blue doesn't suck. It may not be good for the waistline (I wouldn't know on these, never had one), but he loves them and is BIG on comfort food lately. :) So THANK YOU for the wonderful support!

Passing out now,

T

Cancer landed a left uppercut today ...

Kel had a follow up appointment with the oncologist this morning to get the results of his bloodwork and find out the next plan. Cancer won today's fight, but is GOING TO LOSE THIS WAR! So, the results and plan:

Not surprisingly, but definitely disappointingly, the biomarkers are increasing meaning the cancer left is still active and growing. They aren't sky-high, but definitely trending the wrong way. So, we need to kick the testicular cancer ... well, in the testicles! :) Trying for humor, just not doing well at it today.

The plan:

Kel needs to do three more rounds of chemo, and to start as soon as he can. We are waiting to hear from some scheduling, but he will have a central line put in - which will be nice to his veins for a bit - before starting chemo next week. This regimen is a bit more harsh and is constantly infused, so for each of the 3 chemo cycles he will stay in the hospital for 5 days. The first round should be next week, the second at the end of May, and the third in late June. After that it will be a re-eval with bloodwork and a CT scan to decide if he still needs surgery - doc put that as a 50/50 shot.

After the first round of chemo, Kel will have some bloodwork again. If the biomarkers decrease as expected, than the next 2 cycles will continue as planned. If he does not respond to the new stuff - called VIP, btw, for vinblastine, ifosfemide and cisplatin - then the next option is something called tandem transplant where he donates his own bone marrow to himself, gets high dose chemo ... high, high dose ... and then gets his own bone marrow back. Then likely surgery to follow. Pray NOT for that - it is not pleasant for Kel to go through.

Right now he, and we, are tired, scared, and hating cancer. Cure rates are still great for his prognosis, but are down a little. That is weighing heavily on him and us all.

The sitting here waiting for calls, for chemo, for cancer kill is agonizing. Hurry up and wait is NOT the approach to take with cancer. Kel wants to do something .... anything ... to get things moving along. Even waiting until next week is hard.

I hate cancer. My head is killing me today from too many tears. Too much stress. Too much.

It has been a tough day, so gonna go with Cancer Sux. Cancer REALLY sux. Cancer really really (insert explicative) sux.

I need my mommy ... oh crap - cancer really sux.

Through more damn tears that are making my head agonizing ... so signing off.

T

Change to Cancer Really Sux

And to explain the new icons on the right (especially once I figure out how to make them more visible, and add photos) - I am designing some t-shirts to go along with this blog and our experiences, expressing our disdain for cancer. The shirts are kind of cool (but I am biased) and can be designed a few ways, for now. The front logo is the same as the new banner on this blog page, and the backs are variable. 50% of the proceeds will be donated to cancer research. I am not too webdesign savvy, but if you are interested in seeing them check out the details at my facebook page. And here are some of the new 'girlie' colors.

Back to us. We have had a nice week with my father and my niece visiting, and my aunt through Tuesday. I took the week off from work too, and spent time with them. Today we (minus Kel, who was at work) went to the Pima Air and Space museum, which the kids loved, and yesterday my niece Danelle joined me in a tour of my cancer research lab that I gave to 11 and 12 year old middle school kids. I think she liked it!

Kel is doing alright physically, but the not knowing what is coming is hard. B/W will happen in a week, and then we meet with the oncologist for results and the next step on 5/3. So only 1.5 weeks away.

It is after midnight and I teach in the morning, so onto the ReallySux section: :)

-Doesn't really suck is going to be a nice week with Dad and Danelle. Although Dad's cooking is too darned good and I need to eat less!! Darn him ... and this is pre-cooking school. Just wait until after?! Ugh. ;)

-Sux is the waiting. My dreams are permeated by fears and uncertainties. The other night I dreamt that I was awaiting surgery to biopsy bile duct masses as cancer or not. I haven't even heard of bile duct cancer?! Where does my subconscious come up with this stuff? I have been obsessed this week with designing t-shirts and logos, and getting stuff organized, etc. So I have had dreams about that too (i.e. no one wanting the shirts, and please don't feel obligated! We just think they are cool and hope others do too), but bile duct cancer? Geez ... must be a combination of teaching Anatomy and Physiology and all of this sucking cancer.

Speaking of which, I have to teach in the morning, so g'night for now!

Best wishes,

Tracy

It's been a while ... and cancer sux more than ever

At first I was going to write commiseration, not celebration, but Kel requested the cancer sux more than ever.

He had his post-chemo CT scan on Wednesday, b/w on Thursday and meeting with the oncologist on Friday for the results. Kel has been feeling well since the chemo fatigue wore off and he mostly got rid of his cough, so he (and we) was (were) expecting good news - that all was shrunk, and all is done. Instead, this is what we learned:

The good

-The nodule in his lungs is gone.

-There is some scarring in his lungs from the treatment - probably why he is still coughing and having some irritation.

-The kidney swelling is gone, his kidneys are working well.

The bad

-The mass in his back has shrunk by ~65%, from ~10x10 cm to ~7x4 cm, the aim was less than 1x1 cm.

-The bloodwork did not progress as expected. His main marker (AFP) was down after the 3rd cycle as expected, going well, and did go down again, but not much (from 32 to 20-something ... if it had progressed as expected that # should have been 2). LDH (another marker) also did not progress.

The ugly

The end result is that he still gets to play the cancer card to keep me from beating him up for lame comments (like he did tonight), at least for a while. The doc is waiting 2 weeks and then retesting the b/w to see if those markers decrease. If they don't decrease, then the plan is two more rounds of different chemos (Taxol, Ifosfamide and more Cisplatin) that are not pleasant, followed by a major surgery.

If his biomarkers decrease, then Kel will wait 2 more weeks, have more b/w and another CT scan to make sure things have stabilized, and then it is just the surgery.

I say 'just the surgery', but that part is no picnic either. It is a retroperitoneal lymph node dissection: ~ a 6 hr procedure to remove that mass, anything they find it attached to (ignore the dangling participle), and all of the regional lymph nodes. Then he will be in the hospital for a week, with a month recovery to follow.

Yesterday was a bit full of anger, today is more full of concern about side effects, time off work, future works, etc. The end result is still CURE, this is just a lot harder of a road to get there, and we will deal the hand given. Many, many others have it worse, and within a year we will be beyond this and about to celebrate David's 5th birthday (his 4th is on Monday, btw), but for now we wallow, and get pissed and rage against the cancer.

F^#k cancer.

No insight to follow, nothing amazing to share, just pissed at f@%ing cancer ... AGAIN.

Cancer sux ... a lot.

Tracy