Wednesday, July 31, 2013

I've spent most of this week trying NOT to get ready to go to Seattle for two weeks.  :-) I created a few projects to do around the house and got absorbed in them. That was kinda fun. 

Today, however, I had to face reality... I threw a whole bunch of clothes in a suitcase and piled a whole bunch of papers and things in a chair. Harv and I attached the bike rack to my car and loaded the bike. 

We aren't sure how long we'll be in SEA, but we're planning on two weeks. And, then we'll re-evaluate to see if we want to just do daily trips for the remainder of the six weeks.  We even thought of sending Harv to Seattle on the Bolt bus if the docs think it'll be okay for him to ride by himself. That'll be cheaper than a hotel and cheaper than driving. AND, it has wireless on board... 

Friends of friends have given us the gift of house-sitting while they're out of town... Two different situations. Very, very thankful!!! And, then we have a hotel room for a couple of nights at the end of next week...

Also at the end of next week, I'm gonna ride in Obliteride. I signed up for the 50 mile and, if Harv is doing well, I will go for it. If, however, I'm going crazy at the end of next week, I might do the 25. Thank you to all of you who have donated so far! What I love about this ride is that all of the money goes to research at Fred Hutchinson Research Center -- the place that has been EXTREMELY instrumental in saving Harv's life.  

So -- for those of you who pray, please pray that Harv responds well to treatment, that he doesn't feel bad from the treatment and that we can figure out the whole driving to and from thing... (and for those of you who don't pray, please think good thoughts and send good vibes.)

Also, please continue to pray for Sarah and Hannah while they're on their trip. They've been having a good time and helping make a difference for people in New Orleans. Thankful that they've had this opportunity and am REEEEEAAAAAAALLLLLLYYYYY looking forward to having those teeny weensy little baby girls home. 

Thank you, friends!! We love you!

Monday, July 29, 2013

Lest you think I never "lose it" I just wanted to let you know that I was a basket case yesterday. Teary all day long and I can't totally put my finger on why -- except perhaps my brain is just way too full.  (So full I totally forgot to show up at a commitment on Saturday... UGH!) Lots and lots of details to take care of before Thursday...some I have created my own self, some are just part of gettin' ready to leave.

I know it'll all get done. I believe things will be fine, but dang if I can't turn my brain off!

And, so... I would really appreciate your prayers as we get ready to leave... Do the things I can. Let the other things go.

Thank you to all of you.


Friday, July 26, 2013

From Harv:

Wednesday, July 24, 2013

I think the plan is gettin' more firm.

If you haven't figured it out yet, I will let you in on the fact that I am a control-freak. I like flexibility sometimes, but I define that as "controlled flexibility." I like to know what's happening as much ahead of time as possible. 

One of the (many) things I don't love about cancer is the fact that we are totally at its mercy. We must drop everything if the cancer misbehaves (which it is currently doing) and make ourselves available for kickin' its butt. The doctors are good about working with our schedule, but really, how much leeway do you want to give to something that's trying to ruin your life? And, so... we pretty much plan our lives knowing that we may have to plan things differently later. This control freak doesn't want to do things that way. I'd like to make a plan and stick with it. 

So...anyway. The other day, as I was helping the girls get ready to leave for New Orleans, we received a call that said we needed to be in Seattle on Thursday for chemo. That kinda messed me up 'cause I didn't have that plan in my head for then. The plan in my head had a week that was pretty open so I could do house projects and stuff. Plus, that meant that I'd need to make arrangements for Raney and other things. But, what can a girl at the mercy of cancer do? She joins in the fight to kick cancer's butt. And, so I got my mind ready to go to Seattle on Thursday (day after tomorrow).

The next day, though, we heard that we had to wait for insurance approval so it would probably be next week. "Ahhhh... a little more time to breathe," said my brain. A few days of "no schedule."

Later that day, however, we received a note saying that things were on again...and that we could still do it on Thursday if we wanted to. In addition, the chemo is gonna be more involved and, pretty much, we'll need to be in Seattle for most of the next 42 days after we start the chemo. 

Hmmm.  Hurry down to Seattle for (basically) the next 42 days to kill the cancer or wait a while and ease into the gigantic new regimen? 

Turns out, that the nurse said those few days won't really make a huge difference. And, for my sanity, it might be best to wait until next week when all the insurance questions have been answered, lodging has been arranged and home situation is taken care of.

This is how the chemo plan will look:
Day 1 - chemo (6 hours +), take chemo pump home
Day 2 pump chemo
Day 3 - disconnect pump + get injection -- Must be at SCCA for the injection to watch for serious side-effects (we're not sure what all that means, but one thing is possible extreme low blood pressure.) probably a 30 minute appt.
Day 4 - 6 - injection at SCCA
Day 7- 14 - injection at SCCA (different drug) probably a 60 minute appointment
SECOND ROUND:Day 1  - chemo + take chemo pump home.
Day 2  pump chemo
Day 3- disconnect pump
Day 3-6 -- NOTHING!!!! yippee!!
Day 7-14 -injection at SCCA probably a 60 minute appointment.
THIRD ROUND:Day 1 - chemo (6 hours +), take chemo pump home
Day 2 pump chemo
Day 3 - disconnect pump + get injection -- Must be at SCCA for the injection to watch for serious side-effects (we're not sure what all that means, but one thing is possible extreme low blood pressure.) probably a 30 minute appt.
Day 4 - 6 - injection at SCCA
Day 7- 14 - injection at SCCA (different drug) probably a 60 minute appointment

And, all of THAT means that we have to make a decision about whether we feel like driving to SCCA every single day (90 minutes each way if there's no traffic) for the next 42 days for 30 - 60 minute appointment (not counting chemo days) or if we'd rather figure out lodging there.

SO! We have a busy next month and a half.

Prayers for my sanity would be appreciated.

We love you.

Tuesday, July 23, 2013

You know what I love?

People whose faith is genuine, solid, deep and real.

Today a wonderful lady from our church came by for a visit. I know that God is in her. I know that He is real to her. She spoke lots of words of wisdom. And, she spoke words my soul needed to hear.

A few nuggets from our visit:

"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the water, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned; 
the flames will not set you ablaze.
For I am the Lord your God, the Holy One of Israel, your Savior;
                            -Isaiah 43:1-3

"Forget the former things;
do not dwell on the past.
See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the desert
and streams in the wasteland.
                       -Isaiah 43:18, 19

"Do you not know?
Have you not heard?
The Lord is the everlasting God, 
the Creator of the ends of the earth.
He will not grow tired or weary, 
and His understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary, 
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary, 
they will walk and not be faint.
                           -Isaiah 40-28-31

And, this line from "Great is Thy Faithfulness":
"Strength for today and bright hope for tomorrow..."

Sometimes a girl needs special words. Sometimes she receives them better than at other times. Today was one of those days.


Well, there's insurance to deal with

As has been true with previous new regimens, we have to wait until insurance approves it. And, so, we will not start this Thursday as we had originally thought.

Though I am really ready to kick this cancer, I am kinda okay about not going to Seattle again this week. (Just took the girls down so they could catch their 5:15 a.m. flight today. We went last night and spent the night in a not-very-quiet hotel and got up at 3:00 so they could be at the airport in plenty of time. I was back in Bellingham by 6:30 this morning... So I'm a teeny weensy bit tired right now...and I'm kinda okay just chillin' in B'ham for a few more days.) 

What Dr. Lin is hoping to do is get Harv on a treatment that includes Folfox, gemcitabine and IL-2 (immune booster). It's in the early stages of implementation. There are only two other patients at SCCA who are doing it...but you know what we say: Harv likes to excel at things. So I'm thinkin' he's gonna be one that succeeds with the new stuff.  There's a possibility that they may require him to have the shots administered down there so that they can observe him for any reactions... That might be a pain in the neck, but, you know... if it makes him healthy, then hey!

I think things seem scarier when one is tired and before actually starting something new...  And, sometimes it's nice to just let something soak in a little bit.

Much love.

Monday, July 22, 2013

There is now a plan

We rec'd a call late this afternoon from Dr. Lin's office with our new plan.... 

Harv will go on Thursday for a very full day of blood work, education about the new chemo and then a long time of infusion (six hours!). He will also be sent home with a pump.  And, there will be some immune booster shots that he'll have to give himself for about 3 days a week. He is currently scheduled for four rounds and will go every two weeks.

First of all, let me say that I am SO THANKFUL for smart people like researchers and doctors who are working so hard to find ways to make Harv have a good, long life. I am thankful that Dr. Park believes it's too risky to do surgery -- which is really BETTER for Harv than if he DID the surgery right now. And, I am thankful that Dr. Lin has devised a new strategy. I am thankful that there are still options.

However, I'm a little bit scared, too... I REALLY don't want Harv to feel bad. A lot of that is for him, but it's also a selfish thing. If he feels bad, there's a pretty good chance that there's nothing I can do to help him. And, I don't like that.

Please pray again like you've prayed in the past for Harv to have wonderful results with minimal discomfort. Please pray that I will be a help and not an annoyance as I try to help him. Please pray that there will be quick progress so that maybe he won't have to have as many rounds of chemo as are currently scheduled. (They booked four rounds, but hopefully there won't be a need for all of them if he responds well... That's me talkin' -- not any of the medical professionals.)

My brain is full. My babies leave for a volunteer program tomorrow and will be gone for two weeks.  There are a lot of details floating in my head just to get them ready. And, there's the mama part of that --  you know, all the thoughts that go on in the head when you send your children away from you. (YOU know what I mean, don't you?!)  Please pray for a safe and wonderful trip for them and peace in this mama's heart.

Anyway -- thank you for being concerned and interested in our lives. Thank you for all you do to make our lives easier and more pleasant.  We love you... and we are still GoFightWinnin' and we still have lots of HOPE. 

Bless you.

P.S. I still hate cancer.

Saturday, July 20, 2013


We're waiting for more instruction from Dr. Lin regarding what we're gonna do to make that cancer go away. The other day he talked about combining chemo with an immune booster as the next step. And, I imagine, that when the insurance company approves it, that's what will happen next.

In the meantime, I'm not really into giving any time to the evil little things growing inside Harv. I want to attack, attack, attack!

Don't get me wrong, though, I don't actually look forward to being in the infused chemo stage again. While Harvey handled it well, it was still pretty unpleasant. 

It's a funny thing being in this seat... we were scared at first 'cause we didn't know ANYTHING and it all sounded so ominous. And, then, we had success with treatment and we got relatively "comfortable" with things -- pushing mortality out of our minds for the most part. And, then, we see these little dots on the CT scan and a little bit of "scary" comes back (at least to me).

The thing is, while I want Harvey to be here forever, I don't actually fear death for him. The scary part for me is the possibility that he will be uncomfortable or in pain or feel sick...'cause I can't really help him.  I'm not very satisfied with "the unknown." And, I don't want our girls to worry about their Papa. 

So, all of this is to say: please pray that Dr. Lin  will soon come up with a successful way to shrink the tumors so that Dr. Park can do another surgery in a couple of months.... And, please pray that whatever the treatment is will be handled well (by all of us).

We have had a really busy, but happy summer. The weather's been beautiful. The activities have been fun. The visits have been wonderful. And, we're not finished yet. (Please pray for safe travels for those of us who have plans that extend beyond Bellingham.)

Thanks for lettin' me get some things out of my head...  Love you.

Wednesday, July 17, 2013

Plot Twist!

Looks like we won't be heading to surgery after all next weekend....  Harv's CEA is higher than it was last month and it looks like one of the tumors (which has increased a little bit in size) in his right side is too close to an important vein for surgery. There needs to be a bit more margin.

Dr. Park said that there's no reason to be discouraged but Harv needs to attack those tumors with some strong stuff before Dr. Park will feel okay about surgery.  If he were to do the surgery and get too close to the vein -- perhaps damaging that vein -- it could lead to liver failure. We're not really into the idea of liver failure.

So we will wait to hear from Dr. Lin about the next steps. Dr. Park thinks there should be some stronger chemo than the Xeloda, but he's the surgeon, not the oncologist. We'll see what Dr. Lin's thoughts are.  

Truthfully, I was disappointed and sad when we heard the news. I am so dang ready to move outta this treatment phase.  But, I certainly don't want to risk liver failure.  

I've discovered that when we go to the doctor and we hear news that I don't love, I have to process for a little while -- without discussing -- and then I get to the "let's kick this cancer in the butt" phase. 

I'm tired. I keep wanting normal. The "normal" I keep thinking about is about two years old or older. We aren't there anymore.  Oh, how I long to be able to embrace what is instead of longing for what was! That'd be a good prayer.

And so, we wait for further instructions. We are currently enjoying a visit from my sister and her boys. And, tonight, we are indulging in our SECOND trip to Mallard Ice Cream this week -- topped off with a happy viewing of "Napoleon Dynamite."  

We will find out soon what our next steps are. And, I will ride my bike in a few weeks to help doctors and researchers discover ways to make cancer disappear.

Many blessings to you all. You are all truly a blessing to us.

Tuesday, July 9, 2013

It's on paper

Think y'all already know this, but I'm confirming what I told you last time... 'cause now we have a piece of paper that lays it all out.

CT scan on July 17th
Surgery on July 27th

Dr. Park doesn't think the colostomy reversal should happen at the same time. He gave Harv a referral for a surgeon who can do that in the future.

Harv will just be gettin' home a little bit before my big bike ride to rid the world of cancer. Obliteride is happening the weekend of Aug. 9 -11 in Seattle. I will ride 50 miles, but people will ride anywhere from 25 - 180 miles to raise money for Fred Hutchinson Research Center. ALL money raised goes to kick cancer's butt!  I have such good support that I raised more than the minimum required for the 50 mile ride! 

I've been riding a little bit (scenes below) and I think (even though I need more rides) I'm gonna be able to do the 50 without killing myself.

We are looking forward to removing more of the yucky from Harv's liver... Hopefully, that's the last of it.

Thank you, again, for all of your support. 
We love you.