"Chemotherapy Patient"

For 6 months now, my entire life has revolved around being a cancer patient and now a chemotherapy patient. My calendar is full of nothing but appointments.  I want to be ME again - a Dad, a husband, a programmer, someone who has fun and enjoys life - has a laugh, doesn't mope around all day!  Finn asked me the other morning why I was always so angry with him! It was Jean's birthday yesterday and I couldn't even think of anything fun or original to get her!  I hate this so much.

Tomorrow is treatment number 4, preceded by blood work and an appointment with my oncology specialist (see - nothing but appointments!).  We'll be 1/2 way, so at least that is a milestone.

The side effects have been lasting longer and longer after each treatment, so I'm fully expecting this time to be no different - nausea, nerve sparks, neuropathy, exhaustion and a general malaise until at least Thursday, probably longer. 

I am lucky, though!  I was back at work this week and I spoke to a few people about stuff.  One guy has a daughter in law, only 30, who has just completed chemo for breast cancer and is probably heading for a double mastectomy.  She's got young kids, works as a nurse.  She's taken it hard - hardly leaves her room.  Another got diagnosed with testicular cancer shortly after I left work to have my operation.  He had a successful operation back in March, but now has to undergo an intensive chemo regime that sounds so much worse than mine - he'll be an inpatient for 5 days every month for the next 4 months, followed by 3 weeks of recovery time!  Makes my 2 hours, plus 2 days with a pump seem like nothing at all!  We were able to chat a while and I encouraged him to join a support group and talk about it.

Cancer is a fucker!   Sorry there's nothing positive in here.

"How are you?"

I've been trying, and failing, to come up with an answer to this question for months now.  Everyone asks, and it's so hard to answer.  My default response has always been "Oh, not so bad", but that's really not true these days.  If I go into any detail, people will, understandably, just glaze over and quickly try to change the subject, or get away from me asap.  People that I know have intimate knowledge of the process, I feel I can share more with - and I've frequently received useful tips/advice/encouragement from fellow travelers, particularly at the support group that I don't attend as often as I'd like on Monday mornings.


People tell me I'm looking good - but that is basically because I've lost 25lbs since this thing started.  I'm now down below the weight I reached when I was cycling 35 miles a day, which is kind of ironic
 
How I DO feel is, generally, shitty.  Today, coming up to a week after the infusion session, I am still feeling the neuropathy pains and cold sensitivity - I drove down to Oliver's to get coffee on Saturday morning and could barely hold the steering wheel! Thankfully we're not in a cold climate, or it would be unbearable. I regularly get nauseous - particularly first thing in the morning - although I've only actually thrown up a couple of times.  I'm doing very little physically, but am permanently exhausted. 

I walk every day, but I'm not getting any further, I get to the end of the street and have to turn back because I'm scared of going too far - plus, I'm so slow that I am overtaken by even the slowest walkers.  I guess the slow pace has it's advantages, though - one day last week, Jean and I saw a tiny mole (it looked like a small ball of fur) scurry across the road in front of us and then were able to watch as it dug down into the earth incredibly quickly, and follow it's subterranean progress by watching the dirt rise and fall.  Then, on Friday I was treated to the beautiful butterfly in the picture, which stayed helpfully still for a good while, so I was able to get out and prep the camera.

I've got an appointment with the INS tomorrow to renew my Green Card, and then I am hoping to be able to do some work - from home - for the rest of the week.  Hopefully, having something to focus on will help my mood (it would also help if the Giants would start playing proper baseball!!!).

3rd Chemo session

Had the third infusion session on Monday and am still feeling like shit and it's Thursday night. Doesn't bode well for the future sessions. The medical marijuana is helping, I think, but I am loathe to take too much of it.  Don't want to keep on writing because I've got nothing positive to say today.

Let me tell you about Sweetcorn

I'll spare you the goriest details, but please let me warn anyone who is unlucky enough to need an Ostomy bag at any point in their life - AVOID SWEETCORN!  Don't even think about it, unless it's been creamed or mashed or otherwise pulverised.  If you don't heed my words, you are in for about 24 hours of unpleasantness, discomfort and pain.

You have been warned!

A Day without Drugs!!!

So yesterday was the first day since all this stuff began that I know for a fact I had no pain killers, no opiates, no nothing!  I guess that's a milestone.

Since the second Chemo session last Monday, I'd been suffering side effects even worse than after the first one, which is concerning.  The neuropathy, cold sensitivity, nausea and general lethargy were all worse this time around.  After some strong encouragement from Jean, various friends with experience and my nurse in the Infusion unit, I caved in and registered as a medical marijuana user.  

I was never a drug user as a youth, and probably only tried smoking weed a couple of times (while drunk, and with very bad results), and I have always been wary of the stuff. Also, as a former smoker, I don't want to get back into that habit!  However, I've been convinced that it is at least worth giving it a go. 

So I went along to Compassionate Health Options down behind the Russian River Brewery pub and talked to a very nice former ER Doctor from London who explained all the options - told me that there are ways of taking the stuff which don't involve smoking and do not give you the high that other versions do and gave me a certificate to say that my condition qualifies me to get a hold of whatever I need.  He also offered to buy me a pint over the road when all this is over with!!

Then it was off to Peace in Medicine which dispenses the stuff.  It's run very professionally and the people there were very understanding to a naive neophyte.  I came home with a "vape pen" and some strawberry flavoured lozenges.

The vape pen gives the most instant results.  I woke on Saturday feeling nauseous and (after dropping Finn off at his rehearsal) I took a couple of puffs and felt a lot better right away.

Saturday night we had been invited by our friend Keith and his charming mother to a meal at Scoma's restaurant down in Sausalito.  At a couple of points on the way down, I did think I was going to have to turn around and go home, but again a couple of puffs seemed to calm down the nausea and the discomfort I was feeling, and always do lately when travelling in a car.

I'm so glad we went - it was a lovely relaxed evening, with fun conversation and wonderful seafood.  It was the first time I had left Sonoma County for non-medical reasons in about 6 months.

My main concern was dealing with the Ostomy bag in public.  Fortunately, the loos were large and clean and private and, while I did have to make three trips there, they all went smoothly with no embarrassment caused.

Sunday, I tried half a lozenge.  It took a little longer, but it had similar effectiveness in killing off the nausea and discomfort.

Monday morning, I felt no nausea or pain and decided to take the day as it came. I was able to put in a couple of hours work (from home), and felt like I actually achieved something.  Then spent the afternoon watching the Giants' Home opener on TV.

I'm hoping that after Infusion Session number three - next Monday - the vape pen and lozenges will really come into their own in helping with the side effects.