High amount of pain, but also high spirits

This will be a short post, because I am tired. :)

Kel had a rough 1st night post-surgery - heavy amounts of pain from a lot of muscle spasms. This continued into the morning, when they finally agreed that the initial pain meds in his spinal column were no longer effective and allowed a more frequent administration of muscle relaxants and pain meds. So, with valium ever 2 hr and his pain pump everything was contained much better. There were still spasms, but much fewer and far between.

Kel's biggest trouble with causing spasms was actually the rest of us making him laugh! We were trying not to, but in a room full of smart asses that is hard. :) If he laughed, the spasms started. Sorry!

Despite the pain, and when he was awake, Kel was in good spirits. He smiled, tried to talk and joke, and seemed happy again at having the mass out of him.

He isn't moving around a lot, but he has gotten out of bed and into a chair a few times today - which is great progress! Tomorrow will be more, maybe even some walking a bit by the end of the day? He is breathing well too - which is important for avoiding pnemonia.

In terms of what we know about the overall cancer - nothing more. No pathology back yet, and no bloodwork taken until a lot later. I will post when I know more about that.

That is about it for the report. The rest of us (Kel's best friend Tim, his parents, my Dad and David) are doing well. Actually my Dad, Kel's dad and Tim were up so late talking the night before (after 2am) that they were all exhausted today and had to take naps, like David. I think only the women toughed it out today. :)

Tomorrow Tim and Butch will go back home, Sue the next day, and my Dad will stay through Monday. We aren't sure, but I think Kel will be released on Sunday and we will return home Tuesday.

Thanks for reading!

Tracy

Surgery report

Kel had his RPLND (RetroPeritoneal Lymph Node Dissection) this morning in Indianapolis. Surgery started around 9:30, surgeon estimated taking around 4 hrs but was done in 2. Not a bad thing, he just does so many of these that he is that good.

I need to get more specifics tomorrow, such as the overall size, how many lymph nodes were taken out, etc. But in general, the surgeon was happy with the removal. The kidney was saved, the vasculature wasn't touched, with one exception (in a minute), and the abdominal wall wasn't touched.

Kel's ureter (drains kidneys into the bladder) had the tumor adhering to it, so that was the toughest part to remove, and the stent was left in. That will come out in another month, but taking it out today after the adherence apparently would have been very dangerous. Also, one of the arteries to his left kidney was so ensconced in the tumor that it had to be removed. But that is ok, because it is not the only blood supply.

So, for now, all looks good. We have no idea if this was curative and won't for a long time. The important things to come soon:

-Pathology. We want to know that there is active cancer in there, which is a little unusual for this surgery: most people have this after chemo and after they have no biomarkers and want to see no cancer. We know that his markers have been on the increase since April, meaning his tumor is growing and we want to hear that it was in the parts removed. If not - then the 'active' cancer is still in there and needs to be dealt with, but this is highly unlikely.

-Biomarkers. Before surgery they were: AFP 390 and b-hCG 14, both increasing steadily. These shouldn't be down to 0 before he leaves the hospital, but we should see them down a bit, again indicating that all of the active cancer was in the lymph nodes removed.

For not knowing about a cure: Kel will continue to be watched by bloodwork and CT scans for increasing markers again and any new nodes. The chance of this surgery taking care of it all is probably somewhere around 50%. The lymphatic system is like the circulatory system in that it is a fluid system going throughout the body, so a few cells escaping can float around and take up residence elsewhere and go unnoticed for some time. So we watch.

If he reaches the one year mark from now with no increases, he can relax a lot more, according to the world's expert doc (Einhorn), so every 'markers' and results day will be stressful and dreaded. We will hope and pray and watch.

In the meantime (this is the not sux section for tonight), we celebrate. Well, Kel doesn't celebrate, he is mostly knocked out. He woke up having some bad muscle spasms, dry heaves and heavy nausea which did NOT help in terms of pain, and a bit of disorientation. He is pretty well medicated tonight and we have to get him up and moving around already tomorrow. Not a fun recovery, it will be a month before he can get back to physical activity, which he needs to do before he can even think of going back to full duty, but a recovery none-the-less.

Back to the not sux:

For the first time since the New Year, Kel will get a break - no chemo, no more surgery (ok, that is a lie - he has to have the stent removed in a month), no constant thinking of it all. Markers will (should) go down, he will be thrilled to see biochemical remission (no elevated markers), which he has yet to acheive, and life can resume a normal routine. We are so glad for a successful surgery, an easy removal and a hopeful surgeon. We even, after dinner, celebrated like 4 year olds swinging our cares away!

Full of love and hope tonight,

Tracy

Back to Indy tomorrow

It has been a while since I posted, so I thought I should jump on and write an update.

In between the last trip to Indy and now, not much is going on. Life is moving forward, creeping towards the surgery this week. Glad it is almost here - Kel is SOOOO happy to be getting 'this damn cancer' out of him.

Last week he had a CT scan to map the tumor in his back and good news is that there are no new sites of metastasis evident (would have decreased the curative potential of the surgery) and the main mass seems to have shrunk a little more (although they only gave one dimension, so hard to really tell).

Bloodwork this last week was less reassuring, but not unexpected. The tumor markers are rising, rising, rising, but without chemo what else would they be doing? Slightly disturbing is also a question of kidney function since Kel has protein, glucose and blood in his urine, but with the surgery the stent will also be removed, which may be the cause of some of those issues.

So the plan is:

Fly to Indy tomorrow (Monday), when my father will also come out.

Meet with surgeon on Tuesday, Kel's mother, father and best friend will also arrive in Indy (it is going to be a lively 3-bedroom suite!).

Surgery on Wednesday, checking in at 7am, surgery to start pretty early (10, I think). Could be a long surgery- I have seen estimates ranging from 3-10 hrs, but Kel's should be more like 6-10 hrs. Oh joy - I am glad we will have many people to keep David entertained over such a long period of time.

I will post as soon as we know anything on Wednesday, but it is going to be a long day, so don't expect much. :).

The following is what sux:

Since the last chemo, Kel has been doing mainly ok, but getting sicker and sicker. His stomach is bothering him more often, he doesn't eat as much and last night he was extremely nauseous. It is strange that he felt better through all of the chemo than he does now, but a lot of it could be nerves too over the upcoming events, and mainly the success of the surgery. Kel is still tired a lot - takes naps most days when he isn't at work, and on days he does work goes to bed early. At least after the surgery he will have a break from all of this while he heals and while we wait to monitor his blood and with CT scans to see if anything new pops up.

The waiting will be torture, but if after a year nothing new shows up chances are high that he is in the clear. Can never be sure, and they will monitor for 5 years, but 1 year is a good mark. Of course, being somewhat realistic, chances are at least 50+% that the surgery alone won't do it and that the tandem transplant will still be needed. We are planning for that (well, planning for 2 months off, at least) - back to hoping for the best but expecting the worst - but hope to be wrong.

Kel has never actually achieved a remission, he has never had his markers normalize, never been off 'treatment' for a long time. During this upcoming post-surgery time we anticipate his markers normalizing for the first time and for some semblance of a remission. The fear will be high every time he gets checked, and it will never be far from our minds, but he - and we - will take the brief reprieve.

Thanks for reading,

T

Met with specialist today

We met with Lance Armstrong's doc today and we both feel a lot better.

Kel's exact dictation for this was "my husband feels some relief, even though he is in a lot of pain, he feels a lot better. The end.

For those who want more specifics:

The plan has changed. It will no longer be the tandem transplant, for now. Kel will undergo what is called 'salvage surgery' in 2-3 weeks. The will remove the main mass, and all of the surrounding lymph nodes on that side. It will be a long surgery (4-6 h) and he will be in the hospital for ~ 5 days. This will all be in Indianapolis with the world's best testicular cancer team.

Just doing the surgery has about a 30-40% cure rate, although the surgeon anecdotally believes it to be considerably higher with single site disease, like Kel has. Should it not be curative, the tandem transplant is still available. But at this point with chemoresistant disease, there is a better indication for surgery (which Kel has wanted since he first learned that the initial chemo wasn't curative - 'just get this damn thing outta me').

A confident and wonderful oncology team DO NOT SUCK!

Thanks,

T

Indianapolis

Sorry I haven't written in a few days - it has been a bit of a whirlwind since we stopped the chemotherapy and opted instead to see the expert in testicular cancer - the doc who treated Lance Armstrong.

I emailed Dr. E last weekend, gave him a brief synopsis of Kel's case, he recommended stopping chemo and we see him tomorrow morning at 9:30 am for a consultation. What we anticipate is escalating treatment to the tandem transplant (they will harvest Kel's own blood cells, then go through the following cycle twice: high dose chemo, would be lethal myelosuppression, then rescue by giving back his blood. We will know the cure rates, expected outcome, etc tomorrow.

We are not yet sure where this therapy will take place - I have heard some concerning reports about the BMT team in Tucson, so it may be better to do it in Indy. We will see what Dr. E recommends tomorrow (oncologist in Tucson suggested doing the therapy in Indy might be a good idea).

Just a quick report, and I will write more tomorrow night after the meeting. We are taking advantage of being in Indy to have dinner with an old friend tomorrow, and hopefully seeing another friend in the afternoon, so it will be a busy day too, then back home on Friday. I leave again on Sunday to visit Mississippi for a week. Whew - it is going to be tiring!

No Sux tonight, doesn't suck - definitely being in Indianapolis and moving one step closer to Kel kicking his damn cancer's butt!

Night for now,

T

New plan # .... I lost count

I was in contact, via email, with the expert in Indy (the doc who treated Lance Armstrong, btw) and he told us to stop chemo now and get to see him this week. So that is what we are working on. Kel will be escalated to the tandem transplant next, hopefully to start this month.

Thanks,

Tracy

A quick report

Kel:

Day 3 of this cycle started today. Kel is handling it well overall, just the same fatigue. His is quite anemic, so his energy level is correspondingly low. The doc even talked today about doing a blood infusion to help with that, but voiced some minor concerns about risks and side effects associated with that. I wasn't there, so Kel decided to wait, and I didn't see the doc to ask him about it. We will see tomorrow.

He has also gained 7-8 lbs over the last 2 days from all of the fluid they are giving him. His kidneys are functioning ok (per this morning's bloodwork), and he will get a diuretic after he is done.

Kel is not yet immune supressed (meaning his white blood cell counts were find, even on the high end), but that should happen by the end of this infusion time. His hair is falling out again, which is strangely comforting because he knows at least the drugs are getting in and doing something.

He may ask for another marker count before he leaves the hospital, but not sure yet.

We haven't gotten to see him much today - he's been sleeping, and David is only not restless in the hospital room for a certain amount of time. So we went after karate this morning, and then back home for lunch and a nap. Came back ~4 and were home for supper since Kel was sleeping). Tomorrow would be our normal Sunday morning family breakfast out, so I think we will pick it up and bring breakfast to Kel.

I am doing a little better over the last two days. I am less angry, less sad, more focused on the day to day. I do miss Kel a lot, since I haven't been able to spend time with him much - he sleeps a lot at night and I don't want to disturb him, plus David ... otherwise we are just trucking along.

We were sad to say goodbye to Rachel and Butch this morning. It was a great visit, and I am so glad they were here to spend good days with Kel, sorry they were here for all of the stressing, and grateful for their love and support.

I am beat down, more emotionally tired than physically, so I am going to cheat to end tonight:

Cancer Sux.

My good friend Christy found out on the year anniversary of her 'remission', that her acute leukemia is not gone and she is rushing around to get things set up for an urgent bone marrow transplant (autologous, meaning from someone else, as opposed to the one that Kel will likely undergo, twice, which is him donating his own marrow/stem cells). She is running around trying to set up her daughter's 4th (I think) birthday party, the impending arrival of her first granddaughter, and anything else urgent. Her spirit is beautiful, and the news is crushing ...

Cancer really sux.

With much (tired) love,

T

It's all quiet on the western front

It is a quiet night here in the Brooks house. Rachel and Butch are asleep, exhausted from the emotional toll and unknowns this week. Kel is in the hospital getting chemo, but he was too tired for a visit from us tonight, so we haven't seen him since ~3pm, and David didn't see Daddy all day.

It is just me and Saja in my bed, and a big empty space where I wish I could hold on to Kel.

Ooops, should have warned you ... not doing well tonight, gonna be all gloomy and depressing, this would be the 'venting and whining' section for today's post. I did post earlier today (below) about how Kel is and the plan.

So back to all quiet on the western front ... it is quiet, just the fan is making noise. And all I want to do is scream from the roof top at the top of my lungs:

I

HATE

Scratch that ....

I

F*#ing

HATE

Cancer

Really, Really, Really hate it. Stubborn stupid ignorant angry cancer.

Not responding to chemo cancer. Not acting like it should cancer. Not dying cancer.

I hate you, cancer.

Ok, writing that helped, cause screaming would wake up the house, and no one needs that.

So, as you can probably tell, not a happy day. Kel is getting his second round of salvage therapy today/over the next 5 days because there is little downside (you know ... other than the crappy side effects of chemo. I am chastising myself, because really, how can I call that little downside??) to it. We have to wait until later in the month to get a consultation with the world's expert in Indianapolis, need to be sure that the chemo isn't doing anything before moving onto the tandem transplant, and not doing anything will ensure that the tumor grows. So ... we (and by we, I mean Kel) are trying another round. Why the f#$k not?

The good side ... David was good at school, although still complaining of an icky tummy :( He had his second swim class and other than being stubborn (proclaiming, 'no, I don't want to' when asked to put his face under water) did well. He had a good night, watched a Scooby Doo and went to bed late.

Kel started chemo at ~2 or 2:30, finally, and had a nice visit with some of TPDs finest, in shifts, before that. Please, for those who want, really, visit him as often as you can or want. It is good for his spirits and his boredom.

I am in a crappy mood tonight, missing Kel, hating cancer, and struggling to contain it all to be completely honest, so I will end with a 'Doesn't suck", because Kel told me I always have to end on a sux/not sux note and there was already enough 'sux' above.

Hmmmmm, what doesn't suck?

Ok, when I step out of my "down and all about sucking cancer" world that is easy ...

Loving, supportive, try to do whatever we need to help family and friends DON'T suck. We are so fortunate to be surrounded both locally and around the country and world by so many who care and want to be here for Kel and David and I, and I am grateful. Kel's best friend is back in NY and told me he just wants to jump in his truck and start driving here tonight (we love you, Tim), but is already planning a trip for later this month and I told him to stick with his plan. Kel's friends at work are so wonderful in offering to help with whatever we need. My friends help so much with playdates and meals and ears to listen and shoulders to lean on (virtual and physical all included there). And Kel's and my families ... wow, I don't know what we would do without the love and support that pours out of them all.

So I will back out of my bad mood just long enough to say:

Thank you.

Now I crawl back into my pit ... at least for tonight.

T

New plan/ongoings

Brief report, here is the new plan:

Kel is going to get this second round of chemo starting today (at some point), even with the indication that it isn't working (biomarkers increased post first treatment). The thought process here is that we have to wait for the next parts (below), and doing nothing has no benefit. The chemo may not do any good (i.e. his tumor may not respond), but the harm is minimal, so it is worth the small possibility of a benefit.

In the meantime, we will be working to set up the tandem transplant to be done here, assuming we need to escalate.

Also, we are traveling to Indianapolis later this month to consult with the world's expert, Dr. Einhorn, about what is the best course of action for this stubborn cancer.

So overall the lack of response is worrisome, we are jumping on the next step and keeping spirits as high as they can be (but honestly barely treading water).

For those in Tucson, Kel is in UMC in 3NW, text he or I for the room number. His direct phone # is 520-694-3156. Visitors are welcome (and appreciated), call or text as much as you like.

All our love,

Tracy

Short report

Yesterday Kel's oncologist didn't have any biomarker numbers due to the snafu at the center, but told us he would bet us 'bunches of money' that they will be down. He called this morning and ...

they went up.

Then he went on to say that this was not a concern, that it is more important what happens at the end of the second cycle, but we are not convinced. There is evidence for a surge in the biomarkers with the first round of chemo, but that happens at day 5 right after he infusion (which did with Kel, his #s went from 49 just before therapy started to 98 by the end of that week), but then a normal half life is expected and the #s should be down 2 weeks later. I did some extensive searching today and there is no evidence for or mention of a prolonged 'surge' and elevated #s being a good thing.

But Kel checked into the hospital today anyway. They aren't starting chemo tonight since he didn't check in until 6:30 pm, and I will be there tomorrow morning when his oncologist 'rounds' to go over this. As far as we can tell, the increasing #s means that he is not responding to the new VIP chemo, and that it is time for either the tandem transplant or surgery.

Not a good day.

Cancer Sux.

(on that Rachel, Butch and I were all wearing our t-shirts today out at Walgreen's after leaving Kel at the hospital and someone asked about them and I gave him a card to find the website!).

Needing some serious sleep,

T