Monday, October 31, 2016

It's going to be a pump

We just got back from our Dr Akhtar and he told me that initially, in the run up to the operation, they will be putting a PICC line into my arm and I'll be carrying a pump around which will be delivering the chemicals.  I'll be contacting RPCC to see if they can bring forward the initial appointment by a week, so I can get going on the 7th rather  than the 14th - we will see.

I was kind of hoping for a pill, but he said that because I'm young and fit, he prefers the pump!  I'll have to find out what the benefits are.

After the operation, I will be on a different schedule which will involve fortnightly treatments, but there will be no further radiation. 


There is a newcomers to Chemotherapy class at 3:00 on Tuesdays.  I'm planning to go tomorrow.
 
I'm not feeling very brave right now, and the whole thing has caught me off guard, but I can can be a determined bugger - and I've got way too much to live for to let this take me down!

Facebook update

I decided to go ahead and post about what is happening on FB..  Really positive response, many people asking to be kept informed, so I guess that the odd update there would not be a bad thing!  I'll keep this private for now.

Went with:

"I've been going back and forth over how, or whether, to post this, but have decided to dive straight in.

A week ago, I had a diagnosis of rectal cancer confirmed by way of an endoscopic ultrasound. Previous to that, I had first tested positive via a stool sample, then a colonoscopy. A CT scan indicated that the cancer had not spread to other parts of my body, and the ultrasound further confirmed that the cancer was confined to the rectum.
I’m going to be starting chemo- and radio- therapy in the next few days for a period of about 6 weeks - after that, I will have a recovery period, followed by a laparoscopic operation towards the end of February, followed by further chemotherapy.
We're dealing with the news and preparing as well as we can to fight this thing. I'm going to be putting myself firmly in the hands of the team of doctors at Kaiser and have amazing support from my family.
Sorry to break such bad news like this, but I could think of no other way to reach everyone."
Had a meeting with Julie from HR and filled her in - got forms for FMLA which need to be filled in by one or other of my doctors.

Off to see Dr Akhtar this afternoon - hopefully to get some sort of idea as to when the Chemo treatment is going to get going - then over to Kathy's for our traditional Halloween (although Finn claims to not want to go trick or treating, which is a turn-up!).

Tired and distracted, not really achieving anything at work. Ho-Hum!

Saturday, October 29, 2016

Why do I want to tell everyone my diagnosis so much? I keep formulating Facebook posts in my head and arguing with myself about how to go about it and what to say, and whether I am going to come off as needy, or whether people are just going to get annoyed by it!  But I still really feel that it would help me in some way if I do!  I don't know how, or in what way that help will manifest itself...maybe someone will have a great suggestion for dealing with the side-effects of the radiation treatment? or maybe someone will suggest some food or drink that is going to help with keeping up strength?  I don't know.  But I feel that I really want to speak out, but at the same time I don't!  I know that I want to tell those closest to me in person rather than through a Facebook post, but who does that include?  Probably the only relevant person is Kathy - and I do absolutely want to sit down with her - but what about Ross, Robbie, Jon?  If I email them personally, how are they going to react? What good would it do to do that?  Last night's dreams were not good, but they were just dreams! Shit shit shit.....I hate this so much!  I just don't know what to do!

Meeting my surgeon

Went solo down to the City in the end -figured that Jean would be better off getting stuff done at home or sleeping.  Good decision, as it turns out!  It was the most intrusive and uncomfortable examination I've ever had while conscious!  Another first for the week, to add to the tattoo and the enema!

Doctor was really encouraging.  Told me the tumour is 10cm from the anus, in the middle of the rectum, explained in detail how the operation goes (small incisions, minimally invasive, area is cut out and the 2 loose ends re-connected).  Warned that there is about a 5% chance that I will have to use a colostomy bag permanently, and a 50% chance that I will have to use one for at least a little while after the operation. I will definitely have changed toilet habits (more frequent and less reliable).


The operation is provisionally set for February 23rd.  The Radiation/Chemo treatment should be over just before Xmas, so I will have 6 to 8 weeks of recovery, although he did emphasize that the effects of that treatment carry on after you have finished actually receiving the treatment.

He advised me to forget about the operation until the chemo and radiation treatment is done - concentrate fully on that and not worry about or even think about the operation until the time comes.  He also praised the team in Santa Rosa and said that I have the best experts working on my team!




Drove back feeling reasonably positive, if a little glum!


Then last night had some horrible nightmares about trying to tell people about the cancer and being ignored or laughed at - friends, family, complete strangers all doing the same thing!   Really disturbing!

I want to get started and get this thing moving! I'm scared, worried and feel a big hole in the pit of my stomach.  I keep tearing up. I don't like this one bit!

Friday, October 28, 2016

Down to the City again

Had nothing scheduled for today, until late yesterday when Dr Alkoraishi rang from San Francisco and said he could see me during his lunch-break on Friday if we can get down by about 12:00.  We want to get on with this, so I agreed.  He asked me to give myself an enema before heading down, so I had to go to CVS to buy one.

In line, there was a woman making a big fuss about the receipt and failing to use the payment machine properly and generally being crap.  I just waited patiently, with my 2-pack of enemas (enemae?) on the belt.  She turned to me and apologized and I said no problem - then she said, well I can see you are planning a big night tonight, so I really don't want to hold you up.  I looked confused, as did the checker, who said "Well, you are dressed very smartly!" to which the woman said "No, no, I know about these things, I'm a nurse, you know!"  I'm still really baffled by what she meant or what she thought I had planned, and I don't think I really want to know!


Odd.

Anyway, this morning it is tipping down with rain, so the drive down to the City is not going to be pleasant.  Not sure that the enema is going to be too pleasant either!

Thursday, October 27, 2016

Rohnert Park Cancer Center

Home from home for a while
Wednesday saw Jean and I meet up with Dr Lee in the Rohnert Park Cancer Center.  Nice guy, put me at ease while describing quite horrific things!  He's going to be in charge of the radiation therapy.  I don't know where I would be without Jean to help me through this stuff!  Even Finn was sweet - laid a hand on my shoulder while I was driving him to school.

When we got home, we got up on the roof and attempted to fix a leak in the in-law unit.  Sticky black tar-like stuff stuffed into the gully where we think the leak is occurring.  It was actually quite fun!

Thursday was my measuring day at RPCC.  They have a CT Scanner that just records images and allows them to mark the exact point on the body that they will need to line up the radiation machine later.  So, I have got my first tattoo!! Three of them in fact.  I've not looked at them yet - I should be able to see the ones on my hips.  I'm going to be going there 5 days a week for about 6 weeks (with a day off for Thanksgiving!) - the appointments most days will only be 10 minutes or so. Time of day to follow.  Hopefully I can get it to fit in OK with Finn and Work schedules.


The effects of the radiation are cumulative, and are accentuated by the chemo-therapy (I will find out what sort of Chemo-therapy they have selected for me on Monday - woohoo!), they are preparing me for tiredness, soreness, frequent urgent urination, diarrhea, itching and that sort of thing!  I will get another list of the side effects I should expect from the chemo-therapy on Monday.

It's really not going to be a lot of fun!

Still, others have got through it before, and I'm going to join them!



Wednesday, October 26, 2016

On we go!

The weekend was basically spent waiting for Monday and the UltraSound scan that was going to determine my fate (cue the melodramatic music!).  Cooked, did stuff, worried, called M&D, not much else.  Very worried.

Monday arrived and we toddled down to SF - I drove so as to keep my mind engaged on something.  Admittance was a bit odd, the guy spent most of his time ignoring me and just clicking around his screen - maxed out the Benny card with the cost of the procedure - we need to get some cash together!

Procedure passed without incident - they let Jean into the room, so I got a hug before they put me under, which was nice!  Woke up and got the news that:




It's a tumour.

It's at stage T3.

It needs to be shrunk.

It needs to be removed.

The drive home was quiet and tense, neither of us are looking forward to the next few weeks.  I want to get on with getting this thing sorted.


Dr Akhtar had mentioned a trial that they would like me to be a part of, however, having read through the details, it really doesn't appeal - there would be only chemo-therapy, no radiation, but the treatment period would be twice as long before the operation.  It was really stressing me out just thinking about it.  I emailed him with some questions, but didn't really get a straight answer.  

On Tuesday, I got a call from the Cancer center in Rohnert Park, over the road from the old Cross-check office and we arranged a "get to know you" meeting for Wednesday afternoon.   I tried to message and call Jean to make sure that there was nothing clashing with that, but couldn't get through - that and a couple of work-related things caused me to start panicking a bit, just starting to feel out of control.  Jean phoned a short while later and I managed to reach a private office down the corridor before I burst into tears!

First time I've cried.

Felt bad for Jean having to deal with me in hysterics. I'm trying to be strong. I'm not strong!
Tuesday evening, we agreed that we should let Finn know what is going on.  He already suspected and had been asking me why I was sad.  I really blew it, though!  He was getting Ice Cream and I was tidying the kitchen and I just started blurting it out without Jean even being in the room.  I think he took it pretty well, considering, but I really should have done a better job of it!

This morning on the way to school, he gave me a sympathetic pat on the shoulder, which almost set off the waterworks again!

I filled in Shane and Darlene on the latest updates - they have both been really supportive.  I mentioned working from home and Shane said "Of course!" like it was no problem, but I am not convinced that HR will be so accommodating.  He told me to talk to HR to make sure that I am still covered by FMLA, which I should do, but can't face right now.

Next up today will be the meeting in Rohnert Park - WooHoo - we are due there at 2:00!

Thursday, October 20, 2016

Negative!!!

CT Scan came back negative!!!  Yay!



Can't celebrate too wildly, because we will not know until next week how far the tumour in the rectum has progressed, but that's good news, right?  They can't see anything anywhere else!  $395 well spent, I'd say!



So, today a call from Kaiser in SF pre-registering me for Monday.  Asked me if I was religious or needed spiritual support! Hmmm...anyway, this one is going to set me back $1,340.80, and that can go up depending on if the doctor orders any more stuff to be done.  I guess we are just going to have to accept that we are going to hit our maximum out of pocket and try to budget for that - HA! "budget", that's a laugh!




Wish Monday was here already, I just want to know what needs to be done!

Tuesday, October 18, 2016

Another Day, another scan

CT Scan today - $400 worth!  WooHoo!  They pump iodine through you, which sends this sort of warm flush through your veins, very interesting.  Only took about 1/2 an hour, including sitting in the corridor for 10 minutes waiting for the nurse to take the IV needle out.

Not sure when the results will show up.

Monday, October 17, 2016

Not a lot

Monday appointment with a dietician - pretty standard stuff: eat more vegetables, less fat and make sure you keep it balanced.  The surprising thing was that once you start treatment, the advice is eat whatever you want and as much as you can!  The appetite is going to be effected by the treatment and it's important to keep the weight up!

Other stuff - eat breakfast, have leafy vegetables at lunchtime (ramen is ok-ish, but need to have something with it!).  Vegetables included in curry do count, so go ahead!

Picked up the stuff I need to drink for both Tuesday's CT scan and next Monday's probing.  That's about it!


Sunday, October 16, 2016

I'm shrinking!

Friday 14th saw a visit to Dr Akhtar   at the Kaiser center.  His nursing assistant has vision problems and is very short - she was tasked with weighing and measuring me, which was a challenge.  According to her measurements, I'm down to 5'10" from 5'11".  Jean pointed out that the measure was dropping down every time I stood away from it.  Never mind, eh!  Ross always used to tell anyone who asked that he was 5'11", despite being at least 6'3" - yet another wonderfully pointless wind-up of his!

Anyway, the doctor couldn't really tell us much, he gave me a few prods and pokes, arranged for some lab work and a CT scan (more fasting and the drinking of iodine, whoopee!).  I asked about diet and he referred me to a dietician who I will see on Monday.

Not much else, but at least I felt we were doing something - the ultrasound probe can't come quick enough for me! Need to know how serious or otherwise this is!


Finn's birthday today - he's turning 13.  Cue the brave faces.
 

Thursday, October 13, 2016

It's official

Dr Feng called yesterday afternoon to confirm that it is definitely cancer, but that I am going to need an ultrasound examination to determine the extent of it.  After that, it will be chemo-therapy to reduce the size of it and then an operation to remove it.  Simple!

Weirdly, my mind has been mainly engaged in finding creative ways to "announce" the news on Facebook.  I thought maybe send a photo of something that looks like crystal meth and say that I'm still trying to get that blue colour, any suggestions?  Or a creative, ironic hashtag?  Or maybe I should just keep quiet.  I am conflicted.  The sympathy would be nice, but it doesn't achieve anything, and the last thing I want is for people to tell me that they are going to pray for me, but what else can people do!

I'm not angry, but I am frustrated and very very scared. I've not cried yet.  All the signs I can see point to this being treatable, so maybe I needn't be worrying at all, it's just the name "cancer" and the terms flying around ("chemotherapy", "infected tissue", "ulcerated lesion") that make it seem so dark.

Jean's been so sweet.  I love her more than I have ever imagined being able to love. I hate the fact that this is going to be a burden on her - she's going to have to deal with all the household stuff and also with me, yet again!  Plus, of course, we are going to have to find some money from somewhere!

Shit Fuck Bollocks!


Edit:  I've asked twitter for help in naming the tumour  "I've been told I have a small(?) cancerous tumour in my rectum.  I think I need a name for it, any suggestions? I'm thinking maybe Arthur?"

Monday, October 10, 2016

Off we go

No idea where this journey is going to lead, but I'm hoping that documenting it might help in some way.

On October 6th, 2016 I went for a colonoscopy at Kaiser Santa Rosa after blood was found in a stool sample I had provided a few weeks earlier.

I showed up, a little nervous, at the ambulatory clinic and was admitted - Jean was told that they would call her when I was ready to be picked up.  They weighed me (I've gained 20lbs since my last Kaiser visit! Largely because I don't cycle any more and really haven't found a suitable replacement activity for keeping fit!), and took blood pressure and stuff and then showed me to a bed and told me to get the gown on.


A charming nurse came to complete the preliminaries - she asked if I had a problem with needles, which led to a garbled explanation of my medical history.  Turns out that she is a cycle-commuter, too - I hope my horror story did not put her off.  She told me that Doctor Feng who would be seeing me was great - another cyclist who had patented some water-proof shoe covers at some point.

So, I'm wheeled into the operating room and introduced to everyone (doctor, assistant and anesthetist), told to lie on my side and the next thing I know it's all over and I'm being asked if I want some apple juice.

Doctor Feng comes in to see me and explains what they found.  This was the bit that I was worried about, turns out rightly!  Polyps had been removed, but they also found an "ulcerated lesion" that may be cancerous.  My mind basically shut down at this point!  I know he also mentioned treatment options (including chemotherapy, cutting it out and radiation), but that until the tests came back from the labs, we would not know where we are going to start.  I thanked him and he left.

Pretty much immediately I was joined by a male nurse (Paul?) who wanted to reassure me about survival rates - he asked me if I was religious, which was a bit concerning, and told me some stories of his cancer-surviving in-laws.  I didn't really need that at this stage, my concerns are: How serious is this? What stage is the cancer at? What happens next?  He asked me if I'd like him to break the news to Jean, to which I said "Yes" - I wanted her to hear it from someone who knew something about it rather than from me repeating half-remembered phrases that I have hardly taken in myself!

Went home and gratefully had some coffee and ate some food for the first time in 36 hours.





Friday morning I went to work and told Shane, my boss, about the news - asked him to keep it quiet.  Thought it was only fair as I am more than likely going to need to take time of for tests/treatment/whatever, and my mental state may mean I am not 100% in the game - hope I don't live to regret the decision.

Work quiet apart from that - I googled symptoms and treatments, but until I know the stage of the cancer, there's not really any specific advice out there.

Weekend spent moping mainly - I tend to worry when I'm not busy and let my mind go to places it has no business going, so staying busy is going to be vital.


Phoned Mum and Dad on Sunday - I'd already let them know about the test results. Soo and Ipen were there, too. Mum & Soo concerned, Dad oblivious. 
 
Emailed my GP to try to see if there was anything that I should be doing or avoiding doing - I think I confused the issue by bringing up shoulder pain meds, which was not really the issue.  His answer didn't really lead anywhere.

Came to work on Monday and I'm moping around again, mainly
- not really achieving anything and refreshing my email every 5 minutes in the hope of the test results arriving.