Monday, March 30, 2009

Forgive me, friends, it's been several days since my last blog. I have been off the chemotherapy now since Thursday evening, and promptly vomited for the first time on Saturday morning. Maybe it's that cold turkey withdrawal deal, but I must say I felt like a new man with no nausea for hours afterward.

Today is my fourth day without chemotherapy. I load up again on Friday. We were briefly discussing my cutting back to three Xeloda twice a day, but my blood work results were "fantastic," according to my Dr. Jafari (I claim him now) and my weight was increasing, so we will stay at four Xelodas twice a day. Nausea be damned! Michal and Sandra both were all in for this, and I feel strong and otherwise healthy so here we go again for Round Two at week's end.

By the way, Dr. Jafari grew up and studied medicine in Germany, as if he could be any cooler. I am a "Germaphile," and we communicated a bit in Deutsch today. Lots of fun for me.

My appetite has returned this weekend, and things smell better to me. The bouquet one gets from the chemo lends everything an overpowering smell. Walking in the front door... The kitchen entry.... the open fridge... so the house smells like home again for the past few days.

Right now my biggest challenge is to stay hydrated, and Michal Anne's idea of drinking Gatorade between waters has been helpful. Still my pulse rate is up too much, and drinking fluids can alleviate that.

Tonight we lasagna, with a chance of a possible sherbet afterwards. Nummy!!!

Saturday, March 28, 2009

Week 3 of Treatment......

Today marks the start of the 5th week since Nick was preliminarily diagnosed with cancer, and the 3rd week of his chemotherapy treatment. These weeks have passed with blinding speed for me. It is noteworthy to mention that this is Nick's first 'off week' for chemo. In each 21 day cycle, he takes oral xeloda the first 14 days, and gets the last 7 off. The xeloda keeps on working during that time, but he doesn't have to swallow the 8 horse pills a day and deal with the upset stomach that accompanies the pills each night. We are excited to see how his body reacts and whether he will have more energy to get out of the house.

But, in the event he still wants to hang close to home, it is good to know that the world continues to come to him. We have a steady stream of family and friends who drop by to laugh and talk with us. Thursday night we had tacos, shirley temples, cupcakes and ice cream cake with Connie, Tawnya, Greg and Susan. Nick ate 4 tacos because they were so tasty. We are planning to credit Connie with his miraculous weight gain this week..... Pics to follow.

Some of you have mentioned that you would like to stop by, but don't want to bother us. I will just say that if you would like to stop by, we would love to see you. The kids enjoy showing off their jumping prowess to different people, and Nick and I enjoy the company too.

Sandra

Wednesday, March 25, 2009

You know, I've had time to think here while I convalesce. And I think the names of my chemotherapies have been dreamed up by science fiction junkies. Gemzar... Taxotere... Xeloda.... If these aren't the names of space stations and alien planets, huh! Of course, they're busy firing away like Han Solo at my liver lesions. I say go get 'em, rebel ships, and if your names help to scare off the tumors, more power to you! But someone's had some fun with this, and I'll bet he or she knows George Lucas.

Tuesday, March 24, 2009

The Good Juice

Yesterday, Nick had his second infusion of Gemzar and Taxotere at the lovely new cancer center at Skagit Valley Hospital. To capture Nick's affection for this place, we took a little video before his first infusion last week.


video

Yesterday, we met with Dr. Jafari to review Nick's blood counts. I am happy to report that they are holding rock steady. Although... this week will be the bigger test. Blood counts tend to drop after the second or third treatment cycle - when the good guys are accumulating in big numbers and putting some stress on the bone marrow. But, this is where Nick's youth and otherwise good health should help him out.

The other thing that we would like to keep from dropping is Nick's weight. He has been losing weight fairly quickly since all of this began (almost 20 lbs), because food just doesn't sound good to him. Anything with flavor or spices... overwhelms him. This makes sense, as Dr. Jafari
explained to us that the Taxotere makes thing smell funny and gives many foods a metallic taste.

Our solution to his lack of calories is this supplement powder:











2 scoops = 1250 calories

Protein shake, anyone?

Nick also seems to have gained the superpower of bionic smelling, in addition to things smelling not so good. For example, whenever I walk into his house, from 30 feet away he'll ask "what'd you have for lunch, Mike?" and offer me a breath mint. It's actually kind of amazing.

Last week, Nick slept through most of his infusion. But yesterday's dose of the good juice was a different story. He was awake, alert and chatting with the nurses about their ski trips over the weekend. I think the steroid he is taking is agreeing with him immensely.

Being with Nick through these first initial weeks of treatment has been an incredible reminder of who he is, and what an absolute delight he is on so many levels. I wish I had been better about writing down the hilarious things he has said during this process, because his witty, under the breath comments have been priceless.

I am very lucky to be here right now.

Sunday, March 22, 2009

Tennis Team Power!

Hey Tiger Girls' Tennis Team!
Just wanted you all to know I'm thinking about you and I miss coaching you. I should've written this a couple of weeks ago, but I wasn't sure if you were following this blog. I want you to go out there tomorrow and put on a tennis clinic for those Lakewood girls. Don't feel sorry for them; remember they would pay a lot of money for such a clinic if it were at a tennis club. Mainly play with a smile, because it helps to relax your whole body, and I guarantee you will play some of your best tennis.

Have fun!
Coach Whiton

Friday, March 20, 2009

Blogallyavish

Hey the house is just so quiet at the moment, I stole away for a quick blog. Sandra's at work, the little ones are away at school and play and I hear the birds outside. Wow. This day wants to get nice, but the quiet is so energizing in itself. I am not a lonely person, and have never considered myself to be. My imagination is far too childlike to run out of of thoughts or ideas. When I nap during the day, which I am really good at if you must know, I love just getting lost in thought, letting the experiences take me wherever they will go. If you said, "Nick, I'll give you two minutes to fall asleep," I could do that just about 24/7. If you said, "Nick, I'll give you two minutes to find your happy place," I'd say "I'm already there."

Tuesday, March 17, 2009

The Morning After

Today was Nick's first 'day after' IV chemo, and I must say he looked better than he has in weeks. He looks good, feels good, eats good......if only we could solve the sleeps good part. Tonight we took the kids to Hillcrest Park to play on the big toy, then took a little walk around the tennis courts. Dr. Jafari prescribed some prednisone (a steroid) to help him with his appetite and his energy levels, and it seems to be working.

We are excited to have Nick get his appetite back, because the house is literally overflowing with food. We are so blessed with family and friends who are concerned that we may not have the energy to cook right now. I can't begin to thank you all, because I'd be sure to forget someone and feel bad about that, but I have to mention a few just because.

The Consistency Award goes to Libby's preschool (Bethany Covenant) parent group. They have put together a plan where everyday that Libby comes home from school, she brings an entire meal with her. Talk about a WOW.

The Long Distance Award was previously owned by Nick's Aunt Jacqueline from Reno who provided us with several dinners from "Dream Dinners". Today however, a care package arrived from Robby Nowak in Australia, which was full of Tim Tams (a cookie that Aussies call a Biscuit) and a tube of vegemite. Little known fact.....vegemite is touted as "one of the world's richest known sources of Vitamin B". Rob suggests eating it on toast. I'm curious to try it, but it will have to wait til I get my courage up.

Many more of you have dropped by snacks and meals. The kids are really appreciating the variety of foods, as they are used to getting the 4 or 5 standards that Mommy cooks. We can't thank you all enough for thinking of us. We will however make one request. If you come to visit us, please come hungry!

Sandra

Monday, March 16, 2009

good times with iv chemo

I didn't spend too much time fretting over the weekend about today. After all, I had my port in place and well, I was pretty much invincible. I hadn't stared at the two bandaid spots in the mirror for too long, so I wasn't sure which was the actual port and which was the loop around. Well, I guessed wrong, but my nurse was aggressive but gentle and got the job done. She drew my blood, flushed the port, then put in the pre-chemo nausea stuff and finally the freshly-mixed delicious chemo cocktail. I got to order lunch while there, and they deliver it within a short bit. Great service. Two nurses with high energy just racing around all day. I was there today for 4 and 1/2 hours before they sent me packing. But they had reclining chairs. A beautiful outdoor rock garden with running water (in the summer). Sculptures. Nice paintings in the big room you sit in. The colors, though, are what come to mind in the room. Everything has been done with your comfort in mind. The light-streaming views to the courtyard. The sage green paint on the walls. The welcoming hard wood floors. The purple chairs and tables for friends and family. The nurses station that brings to mind the greens and browns of a Starbucks stand. I was fine spending a little time there today. Next time I go will be next Monday. I won't be dreading it.

Sunday, March 15, 2009

Modern Medicine Magique

Hey all, it’s Sunday night and everyone is already asleep… so I just had a little hankering to geek out for a few paragraphs on the specifics of Nick’s treatment, as some of it is actually pretty interesting.

As we mentioned before, Nick will receive 3 chemotherapies.

The first one, Xeloda, is a pill. (Cool, eh?) Nick started this one on Friday. 4 horse pills in the morning and 4 at night. He will take these pills for 14 days in a row. He says that he feels fine so far, just a little more tired…

Xeloda is interesting because it’s not an active chemotherapy, until you gulp it down. It then travels to the liver where it is converted into its active, butt-kicking form called 5-FU. I won’t state the obvious about a chemo that has a phrase like “F U” in it. But, I will say… the great thing about Xeloda is that once it is converted into its Chuck Norris form, it doesn’t have to travel very far to get to the tumor because it’s already on top of it, right there in the liver. So, that is just - great design. We love Xeloda.

Rumor has it that when Xeloda is used with Gemzar (which is infused through the port) it’s good to give the Xeloda first, just for a few days, to sort of… prime the pump. This apparently makes the Gemzar more effective once it’s added on the 4th day.

So, Nick will get his first infusions of both Gemzar and Taxotere tomorrow morning through his awesome and no longer tender port. He will only have 2 infusions per cycle (two Mondays in a row, then one off).


So… everyone is resting up for tomorrow, when all three warriors will finally be on board, ready and willing to wreak some havoc on Nick’s liver hogging tumor.

To quote Nick, “Somebody’s got a case of the Mondays…”

Ha! I think he will do great.

Lots-o-love to all yo healthy livahs,

Michal

Saturday, March 14, 2009

Message from Nick's Tennis Team...




video


This is a little message from the BEHS girl's tennis team, who wanted to wish Nick well and let him know that he is missed on the courts this season!


Thursday, March 12, 2009

Chemo Starts Friday!

We met with Dr. Sam Whiting today, a medical oncologist at the Seattle Cancer Care Alliance. Although his picture on the website made him look about 12 years old, we were happy to discover that he is almost 40.

Our journey to Seattle was primarily to investigate the option of doing a clinical trial or some other type of chemotherapy kung fu that might only exist within a university based cancer program... however, there were not any active trials ongoing for Nick's specific cancer.

Dr. Whiting was a wonderful guy, very down to earth, who spent almost 2 hours with us. He reviewed Nick's PET scan with him (which he hadn't seen yet) and explained at length what he thought the best treatment path would be right now. He and Dr. Jafari had already spoken to each other and discussed the available options. They both agreed on using
3 chemotherapies upfront:

1 - Capecitabine (Xeloda)
2 - Gemcitabine (Gemzar)
3 - Taxotere

These will be given over a 3-week cycle. And Nick will undergo three cycles (9 weeks) of this treatment, before another scan. At that time, they will determine if the tumor has reduced in size enough to remove it.

Considering that March is the 3rd month of the year, and that there is a 3 in the number 13... I can't help but think that this Friday the 13th is going to be a lucky day... when the three, 3-week cycles, of 3 chemotherapies... will begin. And after 9 weeks of treatment (almost to the day!), Nick will turn 39 years old.

Let's hope he won't be eating after midnight that night.

Wednesday, March 11, 2009

The port is in.

Nick's Port placement went well today. The surgery was scheduled for 1040, and takes approximately 40 minutes, but they got him in ahead of schedule and he was out of surgery by about 1040. The surgery happens under 'conscious sedation' which is a pleasant way of saying a local anesthetic with anxiety medication. This allows for a shorter recovery time, and therefore a shorter stay. Nick was comfortably at home by 1230.

Dr. Jafari visited Nick before his surgery to talk about his plan for chemotherapy. Assuming our consultation with Sam Whiting concurs with Dr. Jafari's, we may be starting as soon as Friday.

I went back to work today for the first time post-diagnosis. I'm not sure I did anything productive, but it was good to get back in the swing of things. It is very comforting to know that all is running well without me.

We have an early appt tomorrow so I must get to bed, but wanted to update you all that the cogs in this wheel are starting move and we hope to be able to report on some real progress soon.

Sandra

Tuesday, March 10, 2009

Port Placement Eve

We have been incredibly fortunate to have appointments and procedures happen so quickly for Nick, and this week has been no different.

After Monday's appointment with Dr. Jafari, we were scheduled to meet with a surgeon this Friday to discuss the placement of Nick's port-a-cath (please see Nick's previous blog to get a feeling for... just how excited he is about this). Friday seemed far far away, particularly because it would only be a consultation. The actual placing of the port would not happen until next week.

Monday night, we called Mark Johnson, a family friend and general surgeon at SVH, to see what he thought about the timing (or rather, the torture of waiting another week). He thought for about 2 seconds and said, "is Nick free this Wednesday?"

Needless to say, my bro better not be snacking after midnight tonight... because tomorrow morning, the wonderful Mark Johnson is placing a port into my brother's chest - perhaps Nick's favorite gift of all time. This means that chemotherapy can start sooner than we thought. And that is a very very good thing.

Some people might not like idea of having a port in their chest...

Nick cannot wait to get his.

Monday, March 9, 2009

Snowy Monday for Cancer Care

Today we met with medical oncologist, Dr. Jafari, in Mount Vernon at the Cancer Care Center. He was convinced we needed to begin with chemotherapy, in order to shrink the tumor down, before we remove what's left of it with surgery. We can begin the chemo as early as next week, as soon as we can schedule a surgery for a port-a-cath to be put in my upper right chest. The port-a-cath spares the needle-challenged patient with one injection that takes care of all the rest. They will use this port to inject future chemo treatments, to take blood draws, etc. For me, this was today's front page news. And mighty exciting too!!

We still plan to keep Thursday's appointment with Sam Whiting, an oncologist in Seattle who is thought by some to be the "med onc guru" in the region. He may suggest a path of treatment or combo of meds that is revolutionary, aggressive and perfect for our needs. He may spill his coffee. But we are taking the pilgrimage to hear his words. He is worth it from all I've heard.

We cancelled our Tuesday appointment with Raymond Yeung, the surgeon, and he agreed we needed to begin with treatment rather than surgery so he was fine with not meeting for a while. We are going to keep his number on speed dial, though, for when the chemo has shrunk the tumor down to surgery size.

Friday, March 6, 2009

Friday's PET scan

Nick had his PET/CT scan this morning. It looks from the scan that he may have a few lymph nodes that are involved in this cancer thing as well as his gallbladder and liver. To us, this likely means that he will undergo chemotherapy prior to having surgery to remove the cancer. We were able to get in Monday with Dr. Jafari at the Mount Vernon Cancer Care Center, so we can discuss treatment options right away, and not wait for an appt to become available with the Seattle Cancer Care Alliance (SCCA). Since both institutions are affiliated, we would most likely be referred for treatment in Mount Vernon (3 minutes from our home), so it makes sense to get started there.

Nick was able to pop in at tennis practice today at BEHS. The coaches and all the girls were excited to see him and he got to see how much he is missed. It was really his first outing besides going to procedures or doctor's appointments in a week. At first, his doctors prescribed him with a pain medication that made him itch, so he had to take benadryl. The combination of benadryl, pain medication and narcolepsy meant that he was spending a large part of his day napping. He has a new pain medicine that doesn't make him itch, so he has been able to stop taking the benadryl, and has been much more alert.

I must continue to thank you all for the support that keeps pouring in. Your comments, cards, emails, texts, and calls are all reminders of what wonderful family and friends we have, and what a wonderful man I have married.....

Sandra

Thursday, March 5, 2009

I medicate, therefore I sleep

I join with Nick and Sandra in thanking everyone from the bottom of my heart for their love and prayers sent in Nick's direction. Your calls, emails, visits, food, childcare offers... have all been so appreciated.

Our mom was visiting me in Philadephia last Friday when Sandra called us with the results from the CT scan. I am very glad that I was with Mom when we received the news. We immediately arranged to fly home the next day.

As luck would have it, my best friend from medical school, Richard Ha, happened to be in Seattle for the weekend. (He normally resides in NYC and pretends to be a radiologist.) But instead of visiting friends, Richard and Bryan Benson spent their Saturday at the UW emergency room, making sure Nick was seen by the right people, handled with care and entertained appropriately. :) His biopsy procedure was then arranged for Monday.

In typical form, Nick has charmed everyone in his path during these appointments, procedures, blood draws, and scans. I was able to be in the room with him during his biopsy (which - by the way - he did under local anesthesia only, because he hates IVs). I held his hand and kissed his forehead, while he maintained a witty banter with the radiologist and rocked out to Enya. The ultrasound team all seemed to linger, even after it was time to go.

As Sandra mentioned, preliminary biopsy results were given to us yesterday by the surgeon. The tissue they removed from the liver appears to be an "undifferentiated" cancer. So, they cannot tell us yet if the tumor began in the liver or the gallbladder or from somewhere else in the body and traveled to the liver as a second home. Nick will be having a PET scan Friday morning at Skagit Valley Hospital, which should help us sort some of this out.

It is still unclear if surgery or chemotherapy will be the next step. But, we are all extremely anxious to get treatment started. As many of you already know, I have one year left in my oncology training. It is ironic, yes. It is both a blessing and a curse. And if I never practice oncology after all of this is over, my training has already been worth it - simply because I can translate this medical information for my family right now, explain the fine print, and hopefully be somewhat useful in navigating through the complicated and crazymaking worlds of cancer and hospital systems.

Lastly, I wanted to let you all know that despite his discomfort, Nick has been exactly the same old Nick. He is as hilarious as ever.... loving and gentle.... full of musings about the world, about life, about our family and our bodies. I know that we all love Nick. But my heart is truly bursting at its seams with love, respect, and admiration for him right now. You all would be so proud and amazed at his ability to take all of this in, with such grace and dignity and calm.

It goes without saying, that my heart is absolutely broken.

With much love,

Michal

Wednesday, March 4, 2009

My first blog

As Nick mentioned below, we have been overwhelmed with a wave of positive energy since last Friday when we discovered that Nick's discomfort was most likely much more than we had bargained for. We have set up this blog to keep everyone who is interested in Nick's progress up-to-date with current information.

As many know, today we had our first meeting with the surgeon. It was not as informative as we would have liked it to be. Dr. Yeung has ordered more tests that will hopefully be complete by our next scheduled meeting which is Tuesday the 10th, and we are also hoping to get an initial consult with the oncologist on Thursday the 12th. Seems so far away, but these docs can't really make any decisions regarding treatment until they have the entire picture in front of them. As much as we want them to go in and take out the bad stuff as soon as possible, we trust that they are experienced in this and know what is best for Nick.

Again, thank you all for your support this past week. It means a lot to us that you are all on our team.

Sandra

Thank you all for your support

What an amazing outpouring of support we have received from our family and friends this week. I join my loved ones in thanking everyone who has expressed concern since last Wednesday. As you may know, I was evaluated on Friday morning for what was thought to be gallstones. After my ultrasound, a CT scan was done and it showed possible gallbladder cancer. The doctors also told us it had spread to my liver. I had a liver biopsy done at the University of Washington on Monday, and they were right.

We are awaiting confirmation from a PET scan that will let us know exactly how far it has spread. The gallbladder sits just behind the liver and is essentially a holding bin for the bile produced by the liver. Gallbladder cancer is very rare, but it is always found in the company of a gallstone. My doctor first thought he saw gallstones on the images, and he probably did, but next to the gallstones was a large abnormal area, called "a "lesion."

I am not a doctor guy. I dislike them. For me to visit the medical center requires lots of prompting from family and friends. I didn't think my pain was acute enough to complain about, let alone to waste people's time. If people hadn't noticed me looking "stoved up" over the past month, I would have carried on doing chores and house projects. Looking back since Christmas, I have felt a touch woozy after most meals, but not enough to write about in a blog...until now. My point in this paragraph is that there were battles being waged inside my body well before I recognized any symptoms or pain.

I will keep you all updated as more information comes along....

Thank you all again for your love and support.

Nick