Colorado...so far.

Toni is really enjoying her visit in Colorado. Besides the lunch photo op below, she has enjoyed and evening with her former book club (all girl gossip....eeeeewww), a visit with her grandma, and spending time with family. This included helping Bryan's mom with remodelling concerns (mom listened to the two guys input, but was more satisfied with Toni's thoughts). In addition, we tagged along on a house hunting excursion with her parents.

Toni's health is hanging in there. She feels a bit off. Mild upset stomach and headaches, but that could be the altitude as well. (6700ft vs. sea level...200ft at our home in Seattle). Still has picky taste buds. It is a good thing we'll have a couple of days off to let her fifth chemo treatment settle in over the weekend.

During our visit the lightening has been spectacular. It brought back fond memories of peering out of my window at the frequent summer thunderstorms. Last night, while staying at my parent's house, I found myself with the same opportunity. So, I opened the window to let the cool breeze fill the room. Then I left for a bit. Toni came in from visiting her book club friends, and said it was raining. It was then, I realized I had left the window wide open. Sure enough there was a nice smattering of rain on our bed. Oh well... the room smelled of rain and I just took it all in. Seattle rain, just can not compare.

Proudly, I have yet to look at my blackberry. And I am ok with that.

The Weekend Update: Toni Reunites with Friends

Robyn, Mary, Toni, Becky, and Janet
June 2009

Robyn, Becky and Toni capturing "a comparative moment in time" in Colorado Springs.

The smiles tell the story.

The "chemo" bear has a name!

We have named the bear (see picture below in the blog thread): Friday Harbear. We found him during our May get away to Friday Harbor on San Juan Island.

FORE...er Four down and 22 to go

Toni enjoying the "good life" in St. Lucia during our honeymoon.

Toni had her 4th chemo treatment this evening. It went well and she is doing fine. The oncologist up'd the daily Cytoxan by 25 mg. Toni is still making too many white cells. They know the chemo is working if the cells are going down.

In 12 hours from now we will be Colorado bound. We are tired, but so very happy to be going home. We'll update the blog from Colorado.

Love to all,

Toni and Bryan

How to make Toni feel better in two easy steps.

Take her home to Colorado and write a poem!
We'll be seeing some family and friends; they are very dear to us.


Toni, her sister, and two of her best friends.


Toni's family.


Bryan's family.

So, once in while, I write Toni notes and place them in her lunch bag. Sometimes I'll sing her a song, and from time to time I'll write her an occasional poem. I wrote the poem this morning in about 3 minutes before going to work.

Smiles

Smiles are what make me shine.

From a girl so very divine.

She makes them whether it rains or shines.

Smiles are what make me shine.

She warms my heart with pure loves rhyme.

And brings to life, so much more time.

Smiles are what make me shine.

She looks upon me with her eyes so fine.

Her beautiful smile joins with mine.

Smiles are what make me shine.

****Breaking news: Toni is feeling quite well today. Some fatigue, but asymptomatic for the nausea and headaches. And that is good news.

3rd week - and it was tougher

Every 3rd week of treatment will be a more thorough look at Toni's status. We thought that yesterday would be an in/out kinda day. Not necessarily the case. It all started off ok, but we found out that the lab folks take a longer and more detailed look at Toni's blood and counts. We spent a lot more time working on Toni's headaches and mild nausea. Again the process is usually a saline flush of the port followed by Zofran for nausea and then into the M&F chemo drugs, followed by a saline flush. Yet the staff decided to move Toni towards perhaps another longer lasting anti-nausea drug that is suppose to help with headaches as well. The end result was a 6 hr visit instead of a 2.5 hr visit, and more complex exchange of drugs. Needless to say after we grabbed some vittles for a late lunch, we then lost 2 hrs face down in our pillows.

Toni seems to have fewer symptoms today, but emotionally this was probably the hardest week yet. Toni is very aware of her cancer. We took a lot more time to talk this weekend. I also treated her to a massage this morning to help her relax. I think, to her especially, the road just seems long and weary. She has lots of physical markers and regimens that constantly remind her that things are different. And she simply wants it back the way it was.

Yet, we are on a new path. I am now, more than ever, so very happy to be with Toni. It is difficult to see her a bit more emotionally fragile. We tell each other that our life together will be rich with love and joy. Mostly, this is now about preventing cancer, not eradicating it. That is our new course in life. Although a more challenging path... It will make us healthier in the long run. And therefore, together. Each week of treatment is a gain of "years of life."

In less than a week, we'll be with family. And that will provide more reasons for Toni to feel that she is getting better. No doubt our trip to Colorado will comfort her precious heart.

Toni passes PT test (physical therapy)

Toni did her final PT session for her arm today... and did very well. She has a full range of motion, still needs more strength, but moving well. We are closing in on one week until we are in Colorado. We are so very happy to being with family and our close friends soon.

Toni update: All in all... good. A little tired, and the arm still has the nervy pain thing going on. But she keeps a tad bit ahead of her symptoms with her drug cabinet (er... box). A favorite cheese cracker tasted like "cardboard" with salt. Not sure but this could be the start of the "everything tastes like cardboard" thing that usually happens to everyone on chemo. She said that everything else did taste ok (potatoes, peas, bananas, etc.) So who knows.

She found a recipe for sloppy joes for me... oh my... yum yum. She gets on me that I don't treat myself to a little more meat from time to time. Life with a vegetarian, you know. Honestly, I don't always miss it. But this was gooood!

Ok.. so there it is... more later.

Weekend Update

Since the last post, Toni has cut her hair by about 3 inches (she can not even make the world famous "Binion Bun"). I will miss her flopping back on the bed pulling her hair back and twisting into the "bun." Now she will have to settle for the pony tail. This picture is her scrunching this morning to see what it will look like. I think it is more relaxed looking.

So a quick update on how she is doing. She was very tired on Friday night following the infusion. Yesterday, she had an upset stomach (boardering on nauseated), but the compazine seemed to keep it in check. A bit more symptomatic than last week. But all in all, ok. We are going to go for a walk now and then have a lunch. In less than 2 weeks, we'll be in Colorado. Wahoo.

Week 2 - Visually

Toni with her "chemo" bear.


We are trying to think of a name for the bear. Following chemo...Toni plans to color her hair to match the bear!



Flowers on our front porch. We had just returned from chemo and the flowers had blossomed.

For our guests at our wedding, everyone received a tree to plant. These are our 3 trees that we have kept... they are doing well. We are going to be replanting them soon.

Two down... 24ish to go

Toni completed her second chemo week. This morning went well. We left at 6:30am, got to SCCA around 7am, Toni had her blood work done around 7:15, and by 9am we were getting ready to leave for home.

Pictures tomorrow.

This appears to be quite the predictable event now. For her CMF treatment (daily pill) and (weekly infusion), Toni will be spending around 3 hrs roundtrip each week. It is quite interesting. Toni's RN today was Vicki. She was very nice. The routine starts with an interview discussing how Toni is feeling, symptoms, and and other things going on. Then she gets a series of injections through the port hookup, and she is done. We have found the early morning Friday thing to be really nice for both our schedules.

It appears the only side effect from the infusions on Fridays is a headache, so far. Toni stays well hydrated and we try to keep her eating a little something here and there to help keep her stomach upset. So other than that... we are going to post the pictures tomorrow.

Rare update from Toni

Since I'm not keeping up with Bryan's output, I thought I write a post. Things are going well. I'm having a few minor side effects pop up but nothing unmanagable. I was able to go to physical therapy yesterday (some issues with insurance but all better now.) The therapist was quite impressed with my range of motion. The only stretching exercise that is still a problem is the one where you walk you hand up the wall. Still a bit tight but working on it. So we are really doing strength building exercises at therapy. It's really kind of fun. I think I want a personal trainer now.

Like Bryan said, the infusion on Friday was a little anticlimatic. I had brought all kinds of things to do. We bought a bear on our vacation to be my chemo buddy but we didn't even have time to get him out of the chemo bag. I was looking forward to an hour or two of uninterrupted time to get things done. And then the nurse said you'll be done in 20 minutes. Most days I won't even get a bed. I'll be in and out so fast I just get a chair. But considering the alternative, I won't complain too much.

More later...it's time for bed!

And we are going to Colorado on the 26th!!!!! Yeah!!!!!

Sidebar -- HAPPY B-DAY June 9th to Brad Ross (Bryan's brother)

Note the bunny outfit (that is Bryan, Brad's in the clown outfit).
My mom was 1st among clothing recyclers... check out the pictures
below... the bunny suit is back, but on someone else.


There were two sleds... but Dad could only pull one:)


Fishing with Gino, I can honestly say I have held a shark... ok a dogfish shark, but it is still a shark.


Note the mustache... Brad never leaves home without it.


Brad is back as the bunny... I was lucky to be the lone ranger dude; the masks were stricktly to hide the embarrassment of our parent's Halloween practical joke.

We are into JUNE... to see past posts click on the other months to the right under "blog archive."

The first 72 hours

Toni is 3 days into chemo. Other than managing a bunch of pills, an off and on headache, and a bit of an upset stomach this afternoon (but ok now) she is doing great. Did quite a bit of running around this weekend, plus spent time shuffling things between the house and our nearby storage unit. Her arm pain still persists, but she is deploying all known pain irradication devices (except Advil her favorite drug of choice). Advil is now off the books since it can affect platelet count.

Hopefully this symptom-free trend will continue for a while. We have heard there is about a 10 day lag from 1st starting to take the chemo until the fatigue and other symptoms can set in. So, we'll just try to stay ahead of it the best we can.

We really enjoyed this weekend together. The private time really helped us (particularly me -Bryan that is) talk through some anxieties and prepare ourselves for the long haul. And it helped to ensure we focus on each other first and foremost. Both of us tend to clam up a little and attempt to be "tough," but I found myself feeling so much better after discussing my thoughts with Toni; forever my best friend.

We hope to return to Colorado at the end of June. Toni and I need some "family and close friends" time. We look forward to those precious moments.

Love to all... Toni and Bryan

1st Chemo Day Pictures

Toni on 3rd floor just prior to "chemo" education
This is when the port access is all hooked up.

Toni after the infusion. Note the bandaid (left side).

The port and scar.
If you look closely at the middle of the bump... you can see the needle hole from today.

See the bump... that is the port.

One infusion down, 25ish to go.

Today was for all intent and purposes some of what we expected, and some not so much.

So here is the skinny... we had light traffic (Seattle is notorious for horrid traffic in the mornings and evenings), mostly due to it being Friday, and that put us there about 30 minutes ahead of time. We checked in to the blood draw lab at about 9am. Spent a few moments there, and it was off to a patient education one on one with Deb (one of the nurses of Dr. Lindon's oncology team). We received our "everything you need to know about the chemo thing book" and had a very nice discussion. Lots of "if this happens, then call us" items. We'll have to get those organized in a FAQ (frequently asked questions). However, it started to become a little evident that it was prepping for the worst and hoping for the best.

The regimen was more specifically laid out for the treatment (and a daily routine). Toni's daily routine will start out with a Prilosec for stomach acid, and then a good breakfast. After breakfast she will take 125mg of Cytoxin. That is the C of the CMF chemo treatment. The rest of her day is managing symptoms. Then, like today, on Fridays she'll get the infusion of the MF.

Following the education piece, we went to the Infusion floor. Got a pile of drugs (stomach acid control, anti-nausa, the Cytoxin (the C part of the chemo of CMF) and back ups for other possible side effects. Once called into the Infusion Suite, which took perhaps 10 minutes of waiting room time or less, we were met by a few nurses that did some rountine vital sign gathering and toured us around the Infusion floor. The most important stops were the bathrooms and the snack area. Everyone was quite nice.

There are a lot of checks and balances to ensure the appropriate amount of drug is provided. They even have two persons verify everything right there in the room. That is reassuring.
We thought Toni would be lying down in the bed and be receiving her doses over a long period of time throughout the morning. However, it was about 1.5cc of M and 12cc of F and the nurse simply added them to Toni's port hook up over about a 20 minute period of time. Toni just sat on the side of the bed in the room. Obviously, this is that "Chemo" light aspect. That may change slightly over time but it appears Toni will only have to spend 3 hrs on a Friday from start to finish. And that is a bit of a welcomed surprise.

We finished around noon, and blessed with light traffic again on the 520 floating bridge arrived at Panera Bread in Redmond at 12:30ish. Then it was off to the Post Office, and Ben Franklin store for some Toni shopping errands. Right back into the normal routine of life.

It is now going on 7pm. And other than a slight headache, Toni is feeling ok. So, not a lot going on today... but we have to remind ourselves... this is all cumulative from here on out. Diet, exercise and symptom management for the next 6 to 8 months.

Visit the blog tomorrow afternoon, as we will have a few pictures of today's events.
Love to all, Bryan and Toni.

C-Day (like D-Day)

Day 1 - It is 6am-ish and Toni is sleeping... I will be getting her up shortly. Our day will start with a blood draw, an education class on how this chemo thing works, and then the 1st infusion. We had gone a walk recently, and Toni said "I feel good." And she looks good. So the great news is she is starting from a good position. Still a little frustrated with the nagging come and go pain in her arm, but overall doing ok. Our diet has changed dramatically, and she has surprised me (and maybe even herself) with how well things can taste, yet be wonderfully satisfying. Now the trick is to try to keep ahead of the fatigue to follow. A summary will appear at the end of the day, and now begins the countdown of treatments... 26 bottles of infusion on the wall... yada yada yada.