Bohbs ball blog

a blow by blow account of my joyous trip through testicular cancer.

[bohbstcblog]

6 Weeks Post Treatment: Update

Hi there, just checking in to let you know how i'm doing.  I'll post a pic as well so you can see how pretty I am.  but today i'd say is one of the first days that i've felt like I have full coverage of hair and look like someone who made a bad decision at Supercuts as opposed to a medical experiment in recovery.  so that's nice.

I still have a lot of circulation issues and my hands/arms fall asleep very easily.  my hands have started behaving normally again, which is great. 

i have to admit, I don't think about cancer much.  mostly when I see someone I haven't seen in a while and I have to update them on how i'm doing.  but my brain has definitely moved on.

[bohbstcblog]

3 weeks post treatment

so, it's been 3 weeks since my last treatment and here's how things are going.

Hair:  I've got this light very blonde/white spikes of little hairs growing all over my head.  I think the is still pre-hair from my real hair that will grow in, but it's a good sign since I seem to have full coverage.  it looks like a glowing hair halo.

Energy:  it's hard to tell if I have less energy due to chemo recovery or just from being so horribly out of shape.  but i've been trying to exercise again and it's slow going.  i've complained a lot in this blog about my weight gain (15-20lbs) so with that extra spare tire and my lapse in exercise it could also be that.  but i feel good levels of energy until I challenge myself with exercise or anything really taxing (manual labor) then I feel like a wuss.

peripheral neuropathy:  yeah, it's some complicated strange side effect that didn't kick in until my last couple weeks of chemo.  but whatever they say it is, it feels exactly like when your arm or leg 'falls asleep' like a blood circulation thing.  but it happens all the time.  overnight, when I ride my motorcycle, sitting at my desk at work.  my fingers/hands get it most where I lose all feeling and get that 'tingly' feeling when I move them or clap my hands together to get feeling back.  it's strange.  Dr says this could last 6 months!

[bohbstcblog]

Slight Correction: Test Results

So, for those that may still be following this story I owe a couple clarifications on the test results.  First off, this is why you should be careful about getting your own results from the lab and interpretting vs letting your oncologist explain them to you. 

As reported my mass measured 1X1X.6 cm after chemo, it turns out this isn't some tumor, this is actually the lymphnode itself that has returned to a normal size.  this makes me feel a lot better.  the only questions that remain are

a) will it still funtion? (not likely)

b) will it stay the same size, shrivel up and get smaller or (worst case) start getting bigger again.  future scans will tell this story although vast likelihood is that it will stay the same size or get slightly smaller.

[bohbstcblog]

Test Results

So, I went in with a 2x2x3 cm lymphnode and came out with a 1x1x0.6 cm one. This the dr says is a success, yay... it still feels strange since there is still something there. The likelihood is that chemo killed it and it's a lump of scar tissue that will stay that size forever. They don't go in and chop it out or cut a chunk out for biopsy due to its location. So the assumption is confirmed over time and I'm back to the 4x a year CT scans to keep an eye on this lump and check for any new ones.

[bohbstcblog]

Day 58:

yesterday was my last day of chemo, I did end up getting a mild fever and sleeping pretty much the whole day.  but from here on it it's only feeling better every day and normal real soon.  I'm super excited for it and fully intend on my scans this Friday coming back with good news.  

i'll check back in with an update then

[bohbstcblog]

Day Last One:

today is my last day of chemo and I can't tell you how happy I am to be done with this!  i'm sure i'll feel like crap still this week, but it doesn't even phase me.  I'm done.  

Friday is my all important CT Scan to make sure this was all worth it.  Proverbial fingers crossed until then.

[bohbstcblog]

Day... ? Almost done.

Ok, so I haven't blogged in a while.  The truth is I lost my optimism!  I know, I'm almost done and I got all bummed out finally.  I talked to my doctor about it the other day, and he reminded me that at the very beginning of this I was offered an option of 2 drugs over 15 weeks or 3 drugs over 9 weeks and he pushed me to do the 3 drug option.  One of the main reasons is that it's hard to maintain the stamina, both mentally and physically, over such a long period of time.  People just get tired of the whole damn thing. 

so true.

9 weeks is a long time to be going to the hospital, feeling crappy, having to have cancer and chemo be the primary topic of conversation with everyone and everything and just have it dominate your life.  I certainly don't enjoy 'working' but you miss having a schedule and going to the office and interacting with people and being intellectually challenged.  I've got better things to do with my time than sit around with a needle in my chest getting pumped full of poisonous drugs!  

I'm so ready to be done with this.  so I'm glad I am.  

So here's how i'm feeling now.  On Wednesday, the week prior to my last treatment (Monday next week).

Symptoms:

My hands have started cramping terribly.  I feel like a little old lady with arthrites.  It's literally hard to hold a pen sometimes.  I forgot this was a side effect, but it just caught up with me.

I've got terribly dry skin, I have to lotion constantly, but my hands and feet are still cracking.  

I can't manage my poo.  I'm either constipated or I take too many medications to fix it and am in the bathroom constantly.  My blood pressure goes up and they give me a diaretic, then I pee constantly.  I can't believe cancer treatment has to deal with gastrointestinal issues so much, but it does.  

My stomach always hurts a little, and it's impossible to tell if eating or not eating or eating something different will fix it.  I've tried every combination.  

I've gained weight.  so annoying.  who gains weight on cancer??  But the steroids they gave me ramp up my appetite, and I haven't been exercising and i've put on 10lbs.  

I'm bald as it gets, obviously.  

I get strange heart palpitations randomly.  My heart will just race, and it seems to have no relation to physical exertion.  

I get hot flashes.  like a menopausal woman.  my face will just get red and i'll start to sweat.  

I also feel slack, less muscular, less physical.  I'm sure this is from weeks of not exercising.  even though i've never been in amazing shape I have been very active the last many years, not exercising for weeks has really made me feel different and terrible. I miss making my body work and sweat and tired.

I've lost interest in pretty much... everything.  It's strange.  My brain just doesn't care about anything!  I don't want to work on music, I don't care about the book i'm reading, there's no shows I can't wait to see and I can't dial up passion about my job.  I'm just a little slack in the brain, just like my body.  

The good news is that I know it will all come back.  In just a few weeks.  This poison that I needed to fight the cancer will be gone from my system about 2 weeks after my last treatment.  And i can't wait.  it's been a long time since I felt 'good' and in tune with my body, and that I can trust it to react the way it should or that i'm allowed to push it physically or that I can trust myself to be sharp witted when challenged mentally.  

I think it's a combination of how long it's been and the drugs accumulating in my system so that at this point, 8.5 weeks into a 9 week treatment i'm at my worst.  If that's the case then so be it, I think I managed to get through this better than many have had it.  By my calendar, when September rolls around it's time for my comeback.  and i'm ready.

[bohbstcblog]

I feel stuck, stuck on a pin (iggy pop)

[bohbstcblog]

Day 43:

So... The novelty has worn off. This isn't fun anymore It's so lame having cancer and I'm sick of chemo and talking about it and going to the hospital so often, even writing this blog... All of it. I've figured out how to manage the symptoms and not get too much nausea, how to keep sleeping, how to keep pooping (but not too much!). It's now just a stamina game and finishing out the last cycle. 5 more treatments after today over 3 weeks. Home stretch.

[bohbstcblog]

Day 39:

today is my birthday, and i'm 39.  hmmm, coincidence... 

doin ok!  somehow my chemo schedule managed to miss my birthday, my kids birthdays and any other important dates.  No evil till Monday.

[bohbstcblog]

Day 36 & 37:

Went to work for most of the day then got my weekly blood work back and once again have very low white blood cell counts.  according to that i'm supposed to be a hermit.  so hard to do!  I can work from home, but not running errands, going to restaurants and all other things really drives me crazy.  

i try to be a good patient.

[bohbstcblog]

Day 35:

Oh wow did this day suck.  I couldn't even blog about it until the next day as I had to recover.  

I had my normal Monday 'off week' treatment where I only get the Bleomycin drug.  Laurie and I left the hospital and within 45 minutes or so I started getting full body chills so intense I couldn't stop shaking all over.  We were still in the car as we'd run an errand and Laurie wanted to turn back right away to the hospital cause I looked so freaky, but I convinced her to take me home.  When we got home the shakes hadn't stopped but it became obvious that I was getting a fever, although it felt different than typical, more intense and sudden.  I tried to lay down and Laurie called Nurse Maggie who said we could stay at home if we got the temp down ourselves, but we had to come in if we didn't.  Well laurie took that very seriously and kept giving me cold baths and cold compresses and ice packs on my chest - all of which felt terrible.  despite all this I had a temp of over 103 until about 2am when it finally broke.  

it was like an extra terrible fever but without any of the other parts of being sick.  

It turns out I had a common allergic reaction to the Bleomycin drug, and that there's  chance this will happen  every Monday now that the drug has compounded in my system.  

good thing there's only 3 Mondays left...

[bohbstcblog]

Day 32 & 33:

I have to say, this is supposed to be some terrible part of my treatment where I feel absolutely awful all the time.  but I really don't.  aside from my new need for an afternoon nap pretty much every day I feel pretty fine.  i've gotten used to the mild stomach cramp feeling that the nassau has retreated to, and i'm lucky to have the type of job where I can leave a little early for that afternoon nap.  other than my strange GI system still waking me in the middle of the night for strange bathroom trips, i'm good.  

so not much to tell here!  Laurie said "why don't you tell the story about the other day when the puppy ran up and licked your penis when you came out of the shower?"  and of course I told her that while amusing as that was, i'm pretty sure it had nothing to do with my cancer, my chemotherapy or anything like that.  at least I don't think so.  but look there, i told the story anyway.

[bohbstcblog]

Day 30 & 31

Boring... I worked a bit. I took a few naps. If I was into playing long format Xbox games this would have been a good time. But alas, I am not. I have to be careful with my moods. My mom called and woke we from a nap yesterday and now thinks I'm depressed and need counseling... I'm not thrilled about all this but actually am optimistic! Only 8 more treatments over 6 more weeks. Countdown.

[bohbstcblog]

Day 29:

I kind of slept through today. Went out and did my bike ride at 6am before it got crazy hot, came back and napped. Went to hospital for treatment and slept through the whole thing. Got home, took a nap. Dinner then in bed about 8pm. Lazy Monday indeed

[bohbstcblog]

Day 28:

whew... weekend days with 2 kids while wiped out from chemo is TAXING!  that's what summer camp weekdays make easier.  i swear it's much harder than going to work, but probably a tad more rewarding.

i'm feeling better today.  2 days of no needle pokes makes a LOT of difference.  they give me steroids to take for the 2 days after chemo, i think to keep the drugs working hard.  wow do they make me wired.  i'm kind of typing fast right now. 

MYNAMEISCORNHOLIOINEEDTPFORMYBUNGHOLE

yeah, it sorta feels like that (old reference.  sorry!)

[bohbstcblog]

Day 27:

today I am back on the program.  bike ride and yoga this morning (albeit way less arduous versions that before...) frequent small meals, lots of water and admitting that I need to succumb to a short nap every so often.  

hope it works