How Are You Doing?

•August 28, 2014 • Leave a Comment

Hmmm: “What Do You Think?”

My social life is almost gone with the wind, because I am always worried that my Ileostomy bag makes the unwanted noises that I don’t have any control over. Hopefully it will be gone in two to three weeks, but I really feel for people who have to live with it for a long time. I heard from my doctor that a lady has been living with it since 1960s. I become a couch potato at the end of the day and not like before, taking my camera and go chasing the sunset or exploring beautiful places close to home. My chemotherapy via port/IV started on Monday and I have to say, it’s no fun. I had it so easy with the chemo pills and radiation in May and June, although they knocked me down, but this one, infusion for 48 hours every other week, started messing with me right away.

Bumbershoot is coming over this weekend, and I am really hoping to make it to the Seattle Center for couple of the days, so missing that place.

WSDCC fall meeting is on the 12th and 13th of September, and even though I had made my hotel reservation, but still not sure if I can make it, and if I go, how I would deal with the bag, if it becomes one of those days.

On the bright side, I am alive and plan to be for a long time. Enjoying the support of my amazing family, I really could not have made it this far without their support. Having positive vibes of great friends, from high school to photographers to Democrats, sending their love every minute. Have one of the best medical teams in the nation and the world. Have one of the best insurances possible, thanks to my wife and her employer, and wishing that our insurance system would become as good for everyone as this one is for me. Still opening the gym at 5 am and make most of my daily walk right there. Being busy in the shop and have lots of projects to work on and they keep coming.

Next time you see me, please don’t ask how I’m doing, just tell me I look great, even if I look like poop :-)

Thank you Dr. Ehsan!

•August 13, 2014 • Leave a Comment

Exactly a week ago, last Wednesday, I went under the capable hands of Dr. Mitra Ehsan, and a few hours later, I was out of the operation room, with only three small holes in my stomach, a few centimeters shorter rectum and a new version of “plastic” bag called ileostomy (http://en.m.wikipedia.org/wiki/Ileostomy) which is much more convenient than colostomy.
I am still amazed at the levels of accuracy, confidence and general skills that this young surgeon carries with her. She will be known as one of the best surgeons in the nation and world soon.
I did pretty good after the surgery and got discharged on Saturday.
Right after breakfast on Sunday morning, I started losing my appetite, feeling fatigue and slept most of the day.
Sunday night was the #supermoon show off, and although I had decided to skip it, but my wife offered to drive me wherever I want and encouraged me not to lose the opportunity. So I put my Sigma 50-500 on my mark iii, and didn’t take anything else, even tripod, and we headed to Magnolia Bridge. Luckily, we got there right on time and a few minutes later, I got my #doubleexposure, which gladly went on both Facebook and Instagram pages of King 5: http://instagram.com/p/ri1CBoARRl/
Monday morning, I opened the gym at 5 AM but when I came back, I went to bed again till 10 (haha, cheating.) Then went to see Dr. Ehsan for after the surgery visit, everything looked good. I was feeling excellent on Monday afternoon, had a small dinner and went to bed again.
For whatever reason, I started feeling worse and worse, until 11 pm, when I called Dr. Ehsan and she told me to go to ER. We were more worried about the blood clot and that I was on blood thinner for the same reason, than anything else.
Gazalle took me to ER then. They did tests and x-rays and the whole nine yards, which everything looked good except some movement inside and as a precaution I was admitted. So we were sent to the familiar Overlake’s West fourth floor, the one that I had the pleasure of spending 16 nights in June. On Tuesday,  yesterday, there was still no feel of hunger, but upon Dr’s suggestion, I started walking and walked about 5000 steps around the floor and I believe that was the best medicine. By the end of the night, I was feeling hungry, and in the morning I felt that I am back to normal.
But of course, it’s not my feelings that counts and it’s up to the doctor and hospital to decide.
So, for now, I am still in the hospital, and I just passed my 5000 steps for today.
Till next update, cheers! And if you can have a drink, have one for me too :-)

So, I am just going to add the latest update here: Dr. Ehsan took me to the radiology department and injected some kind of solution from stoma into my stomach, and that solved the problem. I believe if I would be able to eat and tolerate it tomorrow, I will be discharged.

It’s Finally Here!

•August 5, 2014 • 4 Comments

Tomorrow is the day I have been waiting for, for almost four months. Since I was diagnosed with having the rectal cancer, during all ups and downs, the target has always been this surgery. All the chemo/ radiation and their side effects of knocking me down and putting in the hospital for sixteen days; all the follow ups and TPN and blood draws; all building back my body to be as close to before the hospitalization, have been mainly for tomorrow.

I am very optimistic about this surgery, because I know I am in good and capable hands. I know that every surgery, especially when something is taking out of your body, is going to be painful. But, I think about the outcome of it, which will enable me to do the things I love (although not right away) and it gives me hope and energy to heal faster.  

We will be going to Overlake Hospital around 6:30 AM and the surgery is scheduled for 8:30 AM. The hospital stay is estimated to be three days, keeping my fingers crossed.

Depending on how I feel about the colostomy, which would continue for 6 weeks, I may not be comfortable attending meetings or other events and may prefer to stay out of the crowd. I am prepared for that too. And then it will be another round of chemotherapy.

The last couple of weeks were the best part of this year. I was feeling pretty normal again. The weather was gorgeous and made the sunsets so beautiful. I am glad I was able to capture a few sunset shots.

20140802JettyIsland_AG-42

Thanks to all my friends who have sent positive vibes and support, through social media, mail, phone calls or in person. I really don’t know how to thank you enough.

All the best to you!

Until next time!

Al

After The Discharge!

•July 19, 2014 • Leave a Comment

It is hard to believe that three weeks ago I was still in the hospital. It was evening of Tuesday July 1st when I got discharged; said goodbye to the lovely staff at the Overlake Hospital followed by many hugs; sat in Shadi’s car and didn’t care if the fresh air was full of cars’ exhaust because of the rush hour. Everything looked more beautiful than 17 days before when I was so miserable.

When I got discharged, Overlake passed the care to Walgreens and Evergreen Home Care. Walgreen to provide TPN (Total Parental Nutrition) and supplies and Evergreen for taking care of changing the dressing on my surgery part, blood draws for lab tests and taking care of PICC lines which were used for the TPN infusion and blood draws. They both trained Gazalle how to set up the TPN and how to change the dressing, thus Gazalle became my lovely angel faced nurse for the coming days.

Thursday morning, two days after discharge, Shadi took me to the Overlake Hospital for my appointment with my oncologist. At the end of the visit I begged her if I can have two beers on the July 4th and she said NO, I will not forget that NO for the rest of my life :-) Then I went downstairs to the radiation clinic to thank them for their care and to apologize not being able to finish the full period of treatment. They were so nice and Dr. R actually believed that the way my body reacted to the Xeloda/radiation treatment may have been a successful treatment even though it did not take its full period.

The fourth of July came and I grilled some juicy steaks for the family and ended up with a ginger beer :/ We watched the fire work on TV while the infusion pump was sending the nutritious stuff that I needed to build up my body for the next surgery.
I started walking around the neighborhood early mornings, TPN pack on the back and camera in hand. The following week I started going back to the gym and old routine of opening it at 5 AM, treadmill was much more friendly to me than the up and down the hills in the neighborhood, after all the neighborhood is called Newport Hills!
The second week, I started doing light stuff in the shop and finishing couple of small projects left over before the knock down, wrapped them up on sites. Also, I started a new small project for a new condo in downtown Bellevue and still working on it.
One of the most amazing things that happened, I think on the 4th of July, was that I opened the Instagram app on my phone and I couldn’t believe my eyes! My friends from Seattle Instagram community, AKA Igers_Seattle, had started a hashtag for me, #snapsforalg, with such lovely photos and captions that I had a hard time seeing and reading them through tears of joy. If you want to see them, just type “snapsforalg” in your search engine or click here: snapsforalg (Igers_Seattle: love you guys!)

One of the worst side effects of TPN was changing taste of everything in my mouth; this truly coffee lover could not have a cup of joe as long as the TPN was part of his nightly life. It tasted like metal. You may think how I would know the taste of metal, back in the days, before pneumatic nail guns take over the shops, we used to put a bunch of nails in the mouth while hammer in hand, we just had to make sure not to sneeze ;-)

I am off the TPN, the PICC lines are off and feeling pretty much normal. I made it to and Instameet at the Bill and Melinda Gates Foundation Visitor Center couple of days ago (photos here: Gates Instameet) and I am heading to a Flickr stroll in Ballard Locks shortly, if the traffic allows me to get to the west side, there is a huge maintenance/construction over I-90.

A few days ago, Shadi moved to New York to follow her dreams, she will be attending The New School in the fall. One of dad’s final advices to her: “Don’t let anyone clip your wings, fly high!”
The main surgery is set for August 6th. I am not sure if I would have any updates by then so maybe after that.

Till next time!

The Body That Doesn’t Mind…

•June 27, 2014 • 3 Comments

So, since my last post, a lot had happened. I am updating my blog with fingers twice as big as usual and with cracks so deep that I  don’t feel any keystroke, just typing with middle finger, which only Xeloda deserves, on my phone. There will be no time for editing, so take it easy with me. It was a miracle that my friend Maria, another national delegate in 2012, called me a few nights earlier that I should go see her sister, a surgeon in Overlake hospital for second opinion, which I did on the Friday before. There I found out that Dr B, had a knee replacement surgery and will not be able to take care of business for couple of months. That Friday, when I went for my radiation, the nurse told me that I looked miserable, I told her that diarrhea is killing me, she called ivy nurses and gave me couple of ivies, while I had to carry them to the bathroom quite a few times.
I really don’t know what happened to me, Saturday, couple of weeks ago, I shot Jason Ritchie’s Issaquah office grand opening, then went home, packed my bag to go to Vancouver, and everything went South.
My daughter, Gazalle came to stay with me, and then I called my good friend, Mehdi, for advice, he told us we have to go to ER, which we did, got couple more ivies, and discharged early in the morning, but it just got worse, it got to a point that I was constantly in the bathroom, making father and mother of Xeloda and radiation to one big piece of crap.
And, so when the night fell, we went to ER again, and this time admitted to the Oncology department in the Overlake hospital.
I spent father’s day and every day since, in the Overlake. I have felt down, I have cried for putting my family into a miserable situation, but at the same time I have tried to be a good patient, and looks like so far I have done great, becoming nurses favorite patient, mostly because I still want to do my own stuff and be independent.
So, the first week, all the focus was on ending the diarrhea which actually caused malfunctioning of my digestive system and required a small surgery, but since my blood pressure dropped low, I had to stay in ICU, for two nights, and then back to the Oncology floor.
Over the past days, I ended up with different tubes, hanging out of my body, the worst and ugliest, was one hanging out of my nose, which I joked about it becoming like Pinocchio.
The Xeloda radiation is officially ended, we just need to wait so the wound heals, and then the major surgery is in forecast, plus a different chemotherapy to follow.
I am feeling a lot better, I can feel that normalization is coming back to me. It looks like they are considering discharging me after the weekend, I will need to have some nutritional ivy set at home, but it shouldn’t be a big deal. I did take shower today, walked around and took a few shots. I really want to sneak out and take some night shift photos. Let’s see if I will be successful.
Btw, I have never felt so much love in my whole life than what I felt over the last week. From my family stretching their limited time, to my Dem friends making such a nice video, to my IG, Flickr, Facebook friends sending their love. I am truly honored and humbled by your love.
For now, cheers and thanks for coming along!

Paper or Plastic?

•June 8, 2014 • 7 Comments

Here we are, three weeks into my chemo/radiation therapy; I have to say I have had better days in my life, but there have been worse days too, so no complaints there.

First, I wanted to answer this question, as I have heard it many times since I have posted what had happened to my ass, that why I am doing the chemo/radiation before the surgery, I thought I have mentioned this in my first post but maybe not. Anyway, in the visit with my surgeon, he told me that if he was going to do the surgery now, I would end up with a bag for the rest of my life. The first question came to my mind was “Paper or plastic?” but I knew the answer, there was no way that I could carry my shit in a paper bag without being so stinky grose, even I thought about the cotton bags, like the one kids got me for father’s day a few years ago, that says “WWAGD” “What Would Al Gore Do?” but I knew that would not work either. So being an environmentalist I decided to listen to his advice to skip the plastic bag (it’s still a maybe.) Although these days, with frequent flier miles I am getting from flushing, I may have miscalculated that one.

Now, let’s get back to the regular life of mine over the past three weeks. Yes, I did open the gym every weekday at 5 AM, I did not miss a day. However, I had to slow down a bit, the second week I had to stop the push-ups. The third week, as side effects of Xeloda (the chemo pills) I found the sole of my feet all dried and cracked so I had to stop using the treadmill. But I found the elliptical, like finding an old good friend after a long time, replacing the treadmill. Now, I burn twice as much calories within one hour, awesome. I don’t know why I stopped using it a few years ago. And btw, my feet are as soft as a baby’s butt now, had a good “No Crack” hand cream from Duluth Trading which I started putting on and it was magic.

I also found out the hard way after mowing the lawn last week, that the sun is not going to be kind to me while I am taking these pills; my face turned to the UW’s color w/o the gold of course :)

I did manage to beat two deadlines by the end of May, and took it a bit easy last week, although Friday was a killer and I was running between Overlake Hospital, the finisher’s shop and jobsites nonstop like crazy. So, I am open for new jobs, if you have any, send it over, pretty much needed if you don’t want me to put up a cookie sale fundraiser for the medical bills :D

Photography is still a big part of my life, did the #WWIM9, did the Folklife (although not as much as I wished) and couple of Dems events, and of course the ongoing #365infocus! Looking forward to the #DemConvention in Spokane in two weeks.

I am also very grateful to be living in one of the best parts of the world for cancer treatment, truly grateful for the Overlake Hospital’s staff. I am putting less than an hour every day for the treatment, from the time I leave home till I am back since they managed to put me in early afternoon slot so I usually skip the awful traffic of I-405.

My new best friend is power nap, as soon as I feel tired, I take a 15 minutes nap and I am back to kick ass. Except yesterday that I packed my bag to go to Vancouver for the night and thought I should take a 15 minutes nap before hitting the road, which continued by many more minutes until it was too late to leave, lol.

Cheers!

 

TO BE, OR NOT TO BE?

•May 17, 2014 • 4 Comments

Come on, Bill! That shouldn’t be the question. The question should be “How to be?”

Today started the same as usual, gym, snapping a few shots before and after, working in the shop and going to the jobsite. Also went to the Overlake Hospital Cancer Center for the logistics of the future treatments and educational one-on-one with Nurse Karla to be prepared for the outcomes of the chemo/radiation therapy, it may become ugly so I should be prepared for it.

The photo is from the x-ray machine to mark the places they are going to target for radiation therapy. At this step #LMAO was a true hashtag since the marker they used to draw maps on my butt did tickle and I couldn’t stop laughing-my-ass-off, but at the same time I felt really sad that I could not use hashtag #ROTFLMAO because, you guessed it, I was nailed down to that table face down and couldn’t roll-on-the-floor :/

Tomorrow is the Seattle Cancer Care Alliance (SCCA) appointment. It is a pivotal meeting in this journey. I have found out that the rectal cancer is pretty much treatable but the pancreas is a different story and I really want to know my chances. I have found out long time ago, that I should not be worried or saddened over things I cannot change. Instead, focus on the things that could be changed by my work, hard or easy. There’s no good coming out of being sad and worried. That’s probably why over the past couple of months I have been finding more smiles in the mirror. It is amazing how much food tastes better with spending five more minutes on eating it… and sipping a shot of cognac in an hour tastes much better than pouring down twice as much…

 

,Image

 

Saturday May 17th 2014;

The tomorrow above is yesterday now… I really didn’t find time posting the previous note, and I was exhausted yesterday when I got back from SCCA, had couple of my dad’s favorite drink (vodka lime)- of course I didn’t have to rinse my mouth and do the namaz after that-lol! [this note is for those who didn’t get the vodka and namaz part, feel free to skip this if you are a “hamvatan”:  you know that alcohol is prohibited in Islam, so for “good” Muslims like my dad, who did the thirty days of fasting every year and did the “namaz”- a 5 times per day prayer (which I would say it is very good for your joints and back however I get better results from doing the Swedish exercises ;)) and also loved to drink, there was this myth that if alcohol didn’t remain in your mouth it is totally fine to drink it, so they would drink as much as they could, then rinsed their mouths with water and did their “namaz”. BTW, if I were God, I would have loved to hear the prayers of a happy person than a sobbing one. But you already know that I am not, and probably mullahs have a direct line with him and know better, so they don’t want any happy prayers…boom]

Back to yesterday, our day started at the outstanding SCCA facility. Room 3 on the fourth floor was mine for the whole day. Wonderful staff went over my case, asked their questions and I asked mine.  They took my case along four others to their team while we went on a break.

Image

Dr. Venu Pillarisetty (http://www.seattlecca.org/doctor/venu-g-pillarisetty.cfm) came in and gave the best news in couple of months, the pancreas is not considered cancerous but just has a tumor in it and it is going to be watched closely in the future, there is some small suspicious part in the liver which is too small to get a sample for pathology, so he requested an MRI which luckily and magically was done while we were still on campus.

I am out of SCCA’s hands for now and back to Overlake Hospital plan and should start chemo/radiation on the coming Tuesday. I canceled my RSVP for Flickr Stroll today to do some work in the shop since I was not able to do anything yesterday, but am planning to go to the 9th Worldwide Instameet (#WWIM9) tomorrow.

It is kind of amazing how you can feel grateful for rectal cancer, but that was how I and my family were feeling yesterday. Thankful that it is a kind of cancer that has a high rate of cure and hopefully minimum side effects.

Here’s to the good present moments and cheers (it’s 5 PM somewhere  J ) to better ones on their way.

Back to work now…

 
Follow

Get every new post delivered to your Inbox.

Join 3,466 other followers