My Survivorship Thread: s/p EPx4 chemo, RPLND, Lymphocele, Kidney Stent, Recurrence Scares, Depression, PTSD...

[S P]

(s/p = "status post", yet another medical term I managed to pickup along the way )

NEW OCTOBER 2015 - CHECK OUT MY NEW WEBSITE!

www.stevepake.com - Young Adult Cancer Survivorship by Steve Pake

#YACancerbySteve on Twitter and Instagram

Recap:

My intro thread: http://www.tc-cancer.com/forum/showthread.php?t=13902
Debating BEPx3 vs EPx4 chemo: http://www.tc-cancer.com/forum/showthread.php?t=14279
Mediport: http://www.tc-cancer.com/forum/showthread.php?t=14362
Chemo, 4xEP: http://www.tc-cancer.com/forum/showthread.php?t=14425
RPLND at Sloan-Kettering: http://www.tc-cancer.com/forum/showthread.php?t=16050
post-surgical lymphocele issue: http://www.tc-cancer.com/forum/showthread.php?t=16691


NEW LINKS ADDED JULY 2014

1 Year All Clear: http://www.tc-cancer.com/forum/forum...year-all-clear
1 Year and 6 Mos (recurrence scare and PTSD): http://www.tc-cancer.com/forum/forum...ster-it-s-been
I Am Really Hating Cancer Right Now: http://www.tc-cancer.com/forum/forum...ncer-right-now
2 Years Cancer Free!: http://www.tc-cancer.com/forum/forum...-july-1st-2013
A Snapshot of Life at 2 Years and 6 Months Out from TC: http://www.tc-cancer.com/forum/forum...hs-out-from-tc
My 3 Year Cancerversry in Words and in Photos: http://www.tc-cancer.com/forum/forum...-and-in-photos


CANCER WRITING ADDED JULY 2014

My Top 10 Guide to Surviving a Young Adult Cancer (DON'T MISS): http://www.tc-cancer.com/forum/forum...g-adult-cancer
3 Years Cancer Free, and now Blogging for TCAFInfo.org: http://www.tc-cancer.com/forum/forum...ess-foundation


BLOGS ABOUT TESTICULAR CANCER AND YOUNG ADULT CANCER SURVIVORSHIP (Since June 2014)

Everything is at my website here: http://www.stevepake.com/archives/


So how am I doing?

Medically

Fine. I'm coming up on 7 months post RPLND, and 8 months post chemo and all clear. Due to all benign findings during the RPLND, the all clear date starts at the end of chemo for me, confirmed by my DC onco.

The only outstanding issue is the issue from my lymphocele thread with my left kidney and mild to moderate hydronephrosis that was seen. A L kidney ureter stent was placed by my DC uro on Dec 27th, but my Creatinine levels are unchanged since then (still 1.5, normal 0.7-1.1). Looks like Dr. Sandhu at Sloan-Kettering was correct that it wasn't actually blocked. Since my Cr shot up to 1.5 on my last round of chemo, I'm thinking that my left kidney sustained some sort of damage then as this was before the RPLND and before any lymphoceles popped up to block anything. I think the combination of getting extremely anemic and internal organs struggling to get enough oxygen due to that while also handling nasty chemo is what might have triggered a partial failure of my left kidney. Dr. Sandhu thought I might have had some sort of underlying weakness or condition with my left kidney, and that the chemo was a stress test of sorts that caused this. Either it was blocked by the lymphocele, or damaged from chemo. No change after the stent shows that it was probably damaged from chemo, so I'll probably be getting the stent out sometime within the next month or two. We'll see. I'd still like to get a better medical explanation for why this happened. You only need one kidney to live, and medically you really only need HALF of one kidney to live, but it'd still be nice to have both.

As for why I was beat down so badly and got so anemic with the chemo, there's finally been a plausible medical explanation for that in the fact that I have a naturally enlarged spleen. The spleen is like a drain that filters away all of your older or "bad" red blood cells, and I just happen to have an abnormally large one. It's been that way dating back years ago to MRI scans of my back when I was having back problems. When you're going through chemo, even older or 'bad' red blood cells are still capable of getting things done, except that my naturally large spleen sucked them all away too quickly. It also explains why my counts have taken awhile to get back up to normal. So the whole ordeal with getting extremely anemic and needing three blood transfusions had nothing to do with any underlying issue or weakness with my bone marrow, and was probably just my big stupid spleen. That's good, because my DC area onco was starting to get a little worried, and was mentioning doing a bone marrow biopsy when my counts were coming up slower than normal.


Physically

Doing good. Basically back to normal. As soon as I got the OK from Dr. Sheinfeld in October to start working out again after my 4 month checkup, I was finally able to break free from the bad muscle de-conditioning that I experienced. The severe anemia got the ball rolling on that, and then the physical beat down from the RPLND just made it worse. I was in seriously bad shape physically after that. I haven't been able to work out since the stent though. The week after it was moderately to extremely uncomfortable, and two weeks after it was still mildly so. My body seems to have adjusted to it now though, so I'll probably start working out again within a week.

In December I still had this weird flaring abdominal pain that was pretty bad before I'd need to have a BM. I guess my intestines were still working out some kinks from the RPLND, but now even that's gone away too. I still have a little stiffness in the incisional area, and the scar still looks puffy and nasty. Dr. Sheinfeld told me that normally that only happens to black people (nasty puffy looking scar) but that I could get it injected if I want. I don't really care.

So basically I'm fine here, too. My weight is still around 275lb. I started this whole ordeal 10 lbs overweight at 260, with my personal 'max allowed weight' being 250, but ideally wanting to be in the 240 range. I'm 6'3" with a large frame so am never gonna be a lightweight guy, but my goal for the year is to get back to at least 250 lbs even. Due to kidney issues though, I need to talk to my primary care doctor about a diet that might work for me without potentially harming my kidneys. Annual physical scheduled for next week.

The weirdest thing I've noticed since chemo, is that I've become a horribly sweaty person. I used to be a bit of a 'sweat hog' and yes part of it is the fact that I'm a bit heavier now than before. But I used to be 300+ lbs before slimming down and getting serious about diet and exercise many years ago and still never used to be as sweaty as I am now. As in, it's a COLD morning and I take my kids to school with a jacket on, and just from that my arm pits will end up drenched. Especially in the morning, even light physical activity will cause some sort of a mild hot flash type of thing, and then a gross overreaction by my sweat glands. Genuinely WTF? Anyways, due to that the only shirts I can really wear anymore are the athletic type golf tees and other highly breatheable things like that - athletic type wear. I asked my DC onco about this, and the only thing he could say is that chemo can do a lot of weird things to people that isn't fully understood, and this is probably just one of those things.


Mentally

I'm holding up OK, but I think I definitely have some mild PTSD going on. Like countless others have mentioned, surveillance and cancer survivorship is not exactly a walk in the park. This isn't a bad cold that I'm getting over.

Between my job, my family and kids, and various hobbies, I'm able to keep myself busy and distracted almost all the time which is probably the best possible thing for me. It's only natural at the end of the year to "look back", and I'm finding I just can't do that. If I dwell on the subject too long, or think too deeply about all that I've been through, it's like some theatrical "flashback" trailer of some horror flick starts playing back in my mind, which is quite terrifying. The 'clips' in the trailer are real things that I experienced, and consist of the worst and scariest moments of the whole ordeal for me, all compressed into a small little horror flick trailer with all of these different scenes. And as time passes, it takes less and less to trigger this "flashback" sequence to the point that I don't really want to think about it or look back at all. Right now, for me, looking back on this is a downward spirl of emotions and an emotional 'no man's land'. I just can't go there. Not right now.

So there's only one way for me to look now, and that's FORWARD and to the future. I'm also much more of an in-the-moment and spontaneous type of person, and I'm definitely 'living' and appreciating life and good health more as well. I'm meeting up with friends both old and new a lot more now. Having been through this, you realize just how fragile and uncertain life can be, and it definitely changes your outlook on life. I'm not doing anything irresponsible or reckless or blowing money that I don't have, but I am definitely living and enjoying life more now, whereas I wasn't before. Because before I thought I had all the time in the world and was in no big rush to really do or experience anything, whereas now I realize maybe that won't be the case for me. I've definitely changed as a person. I can't listen to Tim McGraw's "Live Like You Were Dying" song anymore. Hits way too close to home, and that's not the only song like that either.

I've had a few surveillance jitters and freak-outs, as many have experienced. The other week at my monthly onco visit, and for no reason I can really think of, I nearly had a panic attack just sitting in the waiting room. A sudden rush of fear and anxiety was sweeping over me and I wasn't even nervous about the visit beforehand, but I snapped myself out of it and started surfing the web on my iPhone.

Seriously though, I'm fine. I'm active and engaged at work, at home, with our kids, with my wife and family, with friends, and with hobbies, and am not withdrawn at all. Am not depressed or irritable, and am living and enjoying life as much as possible. All I'm saying is that there are definitely "choppy water" murky mental areas that I need to navigate clear of for the time being that are consistent with some mild PTSD. I don't want to think about myself with respect to this ordeal at all, don't want to count how many months I've been all clear. I just need to stay engaged with everything outside of this, help others along the way who are dealing with this stupid disease, and minimize the time I think about my own ordeal to only what I feel the need to vent on this forum, and just let the time pass by itself. Just thinking about myself now, a feeling of uneasiness and mild anxiety has come over me so I need to snap out of it and get back to work. As long as I don't think about myself too much, I'm fine.


CHARACTER LIMIT, continued next post......

[S P]

So overall doing good. Life back to normal. Happy to be getting all clears every month, but am sad I didn't quite come away unscathed with the kidney issue. It's stable though, so nothing much to do about it right now besides keep on living, which I plan to do.

This will be my update/vent/rant/celebrate thread from now on. Will have some additional thoughts to post on the mental aspects of all of this in a bit. Need a break from thinking about it right now and need to go do something that's actually fun and positive.

[dc67]

Steve,

You have quite a journey, in a short period of time. Your story is an inspiration for many people, so keep on "venting". I thought I was the only one that got cancer and gained weight . I haven't been through anything close to you but I still know what you mean about that song and many others. funny how you notice little things or words that you never would have a short time ago. Hang in there brother. Keep looking forward.

Doug

[BarclayBanister]

I've gained weight too but I don't attribute it to cancer. I attribute it to getting my appetite back (and then some) coupled with less exercise than I used to do. I attribute this to depression that I have had off and on since the end of chemo.

I wish I could say that I was like SP and that I'm living life more fully and appreciating life more, but that just hasn't been the case. I'm often bitter, sullen, depressed and withdrawn. I have never been the "life of the party" but all this has had the opposite effect on me emotionally. I thought I would be appreciating life and health more and "grabbing life by the horns" but. . . it just didn't happen.

[julesTO]

The weirdest thing I've noticed since chemo, is that I've become a horribly sweaty person.

Hi SP - You might want to consider getting a hormone panel done. Shaun was sweating buckets until we upped his Androgel dose. Just food for thought

[julesTO]

I wish I could say that I was like SP and that I'm living life more fully and appreciating life more, but that just hasn't been the case. I'm often bitter, sullen, depressed and withdrawn. I have never been the "life of the party" but all this has had the opposite effect on me emotionally. I thought I would be appreciating life and health more and "grabbing life by the horns" but. . . it just didn't happen.

Hi Barclay, This makes me sad - I'm very sorry you feel this way. I know a lot of people who have had such feeling (cancer or no cancer), and assume its normal because they've had them for so long. Then they've tried even low doses of meds and describe it as "the cloud being lifted". I know it's none of my business but I just wanted to say that there are A LOT of people who've felt the same way and who've been helped with the right treatment. Wishing you all the best.

[hbr777]

Barclay,

Have you had your Testosterone tested? Luis was irritable and impatient and anxious until he started on replacement. It really has made a difference.

Don't you all sometimes feel like we have been through a war - and no one else really gets it unless they were at war, too?

Luis has recovered physically and is in better shape than ever. He looks amazing. I look like I have aged 10 years and can't take off the 20 lbs from stress eating.

[S P]

the other stuff I forgot:

Neuropathy

It's finally resolved, about as much as I think it's going to. No more shooting nerve pain, thank God. That was killing me for awhile. I still get some little pains here and there now mostly in my feet, but nothing that 'pegs the meter' anymore. My hands basically feel normal. I can touch clothing and other material without it feeling like it's burning, although there is still a very slight 'raw' sensation.

I don't think there's much hope for my left foot, though. It's still 50% or more numb on a day-to-day basis. It's probably just the freezing cold weather, but today it's really bad and probably >75% numb. It doesn't quite feel like I'm walking on a peg like it did after the RPLND, but it's pretty bad. It's ok. It's nothing that stops me from doing any physical activity including walking or even jogging. Just something that you get used to. When it's warmer and when I get back on my exercise program it'll probably get back up to the 'better' end of its range at about 50% feel.

My right foot is just about normal in comparison, but it's still just slightly numb. I have about 75% feel in that one, but believe it or not that makes a difference in driving! One of my cars has the most ridiculously sensitive gas pedals that I've ever experienced, and it's a Toyota of all things! Due to the loss of fine/light pressure sensitivity in my right foot, I can no longer drive this car in what I would consider a safe and reasonable manner. In a nutshell, stepping on the accelerator a quarter of the way basically gives you FULL throttle, and this is a Toyota with their 3.5L 270hp V6 engine, and I live in the jam packed DC suburbs. On bad days it's seriously unsafe for me to drive, but on better days I can just about manage to drive it smoothly, and that includes before all of this craziness. Yes, it's THAT sensitive. I'm tried of it and my wife is too, so we're probably gonna sell it in the spring and get something else. This is more the fault of poor human engineering by Toyota than it is chemo induced neuropathy issues, but still...

It's still a little uncomfortable to walk on carpeting in my bare feet. I'm hoping at least that will resolve, there's still a month or two left for me to see some improvements according to Dr. Bosl at Sloan, but I don't have much confidence that I'm ever going to get something close to "full feel" back in my left foot. Just something I'll have to live with. Don't happen to own one at the moment, but I wonder if I'd ever be able to drive a manual transmission car again with a numb left foot?

Making it through the end of 2011

The last couple weeks of 2011 especially around Christmas and New Year's was a very emotional time for me. I know there's a long way for me to go on surveillance, but I finally started to get somewhat of an "I'm making it" feeling, or that I'm going to make it. Knocking on wood. Somebody else here mentioned that no matter how good your odds are, the cancer patient always feels like it's 50/50, and that definitely resonated with me. Either I'm going to relapse or I'm not. Either there's some cancer still lurking in me somewhere or there isn't. The only way to tell is with time, and being stuck in limbo on surveillance not really knowing is tough. Am I cured or not? Well it's 95% likely that I am and I try to take comfort in that, but yeah, it feels more like 50/50. Either I'm going to be one of the 95% or I'll be one of the 5%, 50/50. LOL *knocks on some more wood*

Being able to celebrate Christmas with my family and then New Years felt in a way like crossing the finish line of a marathon that I was thrown into, had no idea I was going to have to run and hadn't trained at all for, but had no choice but to finish and struggled to do so, because there was no other choice. Either you're going to beat the cancer, or it's going to beat you, so you do whatever it takes one battle and one struggle at a time. Like running a marathon with the grim reaper on your tail? No matter how beat down and how tired you are, you just keep going and don't turn back or stop even for a moment.

Anyways, I cried tears of joy on several occasions as I "crossed the finish line" around the end of year holidays. I also cried tears of joy for Nathan and Elisa aka Team Bond. Two young parents not unlike my wife and I, who got dual cancer diagnosis within a few weeks of each other. They were in NYC and were treated at Sloan, and made it onto the Today show a few times. Miraculously, they both made it! Elisa had Stage IV breast cancer that had metastasized everywhere including to her brain, and Nathan had colo-rectal cancer, Stage II or III. I can't tell you how happy I was to hear that they had both made it, and I'm even crying some more tears of joy for them right now typing this just thinking about it.

And then I cried some tears of sorrow for some of our recently fallen TC warriors, Clint and John. And then Sarge too. For every miraculous victory you read about, there's a heart-wrenching loss and grieving family members and loved ones. It's just not fair, but what can you do? Cancer is so FREAKING STUPID, because in the end the person dies and then the cancer does too when there's no more body to feed off of. I don't know what everyone's beliefs are, but I do take some comfort in knowing that Clint's, John's, and Sarge's spirits are all alive and well, and have now moved on to a far better place where they'll no longer have to suffer. I firmly believe this. Only their bodies have failed them, due to the stupid freaking cancer.

~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~

So that's it Part 2. Life goes on and moves on, even for those among us that didn't make it. I've had some difficult and challenging years in my life that I've said before I would never want to repeat. That all pales in comparison to what I went through in 2011. Normally I don't really care and go to bed well before the ball drops in New York to ring in the New Year. Why? It's just another year. Big deal. Well this time I stayed up and watched. Everything has a bit more meaning now which I like, but only because this ordeal has made me intimately aware of the fragility of life and how much uncertainty there is.

[AustinsMom]

Hi Steve,

I just wanted to say how engaging your story was. You really touched on so many of the day to day struggles as well as victories, both physical and emotional, that you and so many others have, are and unfortunately will continue to face.

I am incredibly grateful for all of the excellent Physicians and other Medical Professionals and Scientists etc. we have access to in this country, some practically right around the corner. I cringe to think of how different our lives and those of our loved ones would be without them. Yet, just as you have illustrated, there is so much more to contend with, as you work your way back to good health, that is either not included, or merely touched upon, in any of the Doctor's Office Visits or Medical Brochures.

Thanks for sharing your ongoing journey with such thorough detail and brutal honesty. You have been through so much and yet, from the short time I've been lurking here, have made the time to reach out and advise or support countless others who are in need.

Here's to nothing but smooth sailing for you, with years and years of watching that clock count down every December 31st!!

Thanks so much,
Diane

[Nut of Mordor]

Great thread Steve !

[BarclayBanister]

Jules, I take an anti-depressant (Cymbalta) and before I got on it early Sept. things were really bad coinciding with my visit to Einhorn. Miraculously the cloud lifted for awhile and now it seems to be back but not quite as bad. *Disclaimer: I have always been prone to anxiety, stress and mild depression. Nevertheless, the added stress of cancer sure hasn't helped. I see a counselor regularly too which helps for a bit. Along with all the other stressors of life cancer is just another one added to the pile and which I really don't need but can't put totally out of my mind. I sure expected some sort of epiphany after all was said and done but I can't say one positive thing about having had this other than my empathy and understanding for people going through all life's struggles, not just cancer, has shot through the roof. That is the one positive I take.

Heidi, I had my levels checked and while somewhat low for my age, the endocrinologist and I decided therapy wasn't necessary at that time. That was a few months ago.

[Nut of Mordor]

JMiraculously the cloud lifted for awhile and now it seems to be back but not quite as bad. *Disclaimer: I have always been prone to anxiety, stress and mild depression. Nevertheless, the added stress of cancer sure hasn't helped.

Same here, the mood goes up and down (down = when getting closer to check ups... like now...). I want to believe that with the passing of time there'll be more ups than downs, because of the decreasing check ups and relapse rate.
For sure there are far worse things in life than surveillance for seminoma 1A, but is also sure that my life is worst since that damned 16th april 2011.

[julesTO]

Don't you all sometimes feel like we have been through a war - and no one else really gets it unless they were at war, too?

I couldn't have said it better. Sometimes I think my nerves have been shot beyond repair.

Luis has recovered physically and is in better shape than ever. He looks amazing. I look like I have aged 10 years and can't take off the 20 lbs from stress eating.

And unfortunately I can relate to this too.

[Alexander Chau]

Great post man, we've almost had identical journeys! Only my RPLND found that my lymph nodes contained teratoma and the doctors labeled there being a 10% chance of it having spread to my lungs (scan on 30th). But i've got a good feeling you'll see five years through without a worry. Most would put their money on it.

[S P]

Jules, I take an anti-depressant (Cymbalta) and before I got on it early Sept. things were really bad coinciding with my visit to Einhorn. Miraculously the cloud lifted for awhile and now it seems to be back but not quite as bad. *Disclaimer: I have always been prone to anxiety, stress and mild depression. Nevertheless, the added stress of cancer sure hasn't helped. I see a counselor regularly too which helps for a bit. Along with all the other stressors of life cancer is just another one added to the pile and which I really don't need but can't put totally out of my mind. I sure expected some sort of epiphany after all was said and done but I can't say one positive thing about having had this other than my empathy and understanding for people going through all life's struggles, not just cancer, has shot through the roof. That is the one positive I take.

Heidi, I had my levels checked and while somewhat low for my age, the endocrinologist and I decided therapy wasn't necessary at that time. That was a few months ago.

BB,

Very sorry to hear you've been having a rough time with this, but glad to see that you're getting help for it. Rest assured that you're hardly alone and that this is more on the normal side. After I had the 'near' panic attack waiting in my onco's office a week ago, I picked up some literature on how to deal with cancer surveillance, and the stats were that 70% of people suffered some sort of depression or anxiety. I fell into more than a few "rare but not unheard of" sort of situations during treatment, so lets just say that for me, this is one of the times I'm actually *happy* to be in that category.

I've never been prone to anxiety or stress or depression or anything like that. I've always seemed to handle adverse situations quite well, so that definitely helps. Getting out and trying to enjoy life a little bit more than before is merely a positive outlet for the same nervous/anxious/depressive energy that pretty much anybody on surveillance is going to have to one extent or another. Just re-directing the energy to something more positive is what I can do. When I have unpleasant thoughts, whatever positive outlet I have that I can do to get my mind off of it is worth doing. Playing video games at 2am? Doing photography related projects. Wood-working? I'm not into carpentry but just examples.

I find I also NEED to be around people a lot more than I used to. I used to be more of a loaner, but very much desire and enjoy having people around me nowadays. I think it's because if I'm alone I'm more likely to start thinking about not so pleasant things, whereas if I'm around people I'm more likely to engage with them which keeps me out of the 'danger zone', mentally. Personality wise I'm a heavily intuitive and introspective person, but it's like I'm consciously suppressing that a bit to 'live in the moment' a lot more simply because there are so many bad things I could be thinking about that I'd rather not.

The 'old me' was an "all things in good time" sort of person who was in no real hurry to do or experience anything in life, because I thought I had all the time in the world. The 'new me' realizes time isn't unlimited. It's not like I had a 'list of things to do before you die', but the whole cancer experience has spurned me into action a bit more. My wife and I have wanted to go see another concert for years now. The last time we went to a concert was Toby Keith in Minneapolis before we had kids. She just booked us tickets to see Lady Antebellum in DC this summer. As an enthusiast / part-time pro photographer, I've wanted to go on a photo tour out west somewhere for awhile now, with a photographer whose style I admire and who offers photo tours. Maybe this year I'll do it. I get a lot more vacation on my new job too, so perfect timing?