Friday, January 30, 2009

WOO-HOO

I am DONE!

We had a celebration at the Proton Center today. It is sort of traditional that you bring food on your last day. And, thanks to much help from my mom, we brought trays of food to celebrate with the staff and other patients. Don, my parents and all the Ms were there to be a part of the festivities, too.

Laying on the table for the last time was EXTREMELY difficult. It is really important that I hold still so the protons hit the right spot, but I was so excited I could hardly contain myself!

I think I was more excited today than when I graduated from high school or college!

And then there was the GONG:

video

So, for now, I am done. I haven't figured out if I am a "survivor" yet or if I am in remission or what I call myself exactly.

It will be months before we know, for sure, that all the chemo and radiation did its job. (Although I believe it has.) I will have a PET scan on March 3 and another one some time at the end of April. Those scans will give us definitive proof that the cancer is gone. And then I still have my "maintenance" doses of Rituxin in June and December (once a week for four weeks) for the next two years.

Keep checking in on me. I will keep you posted on my recovery and other things, big and small.

Sunday, January 25, 2009

Anticipation

The end is near. This Friday will be the last day of my radiation treatments!

It is very exciting to think that my daily trips to the Medical Center will be over.

At the same time, however, there is some fear and trepidation.

I have had doctors and nurses watching over me regularly for the last five months. And now I will be "on my own", only seeing them quarterly.

I have had friends and family bringing us meals, checking on me and in general taking care of me for the last five months as well. They are not going any where, but it is time for me to start taking care of myself and my family.

God brought an analogy to mind this morning: You know Wesley (the Dread Pirate Roberts) in the movie The Princess Bride? (You can skip the analogy if you haven't seen the movie, or you can read on and go get the movie to figure out what in the world I'm talking about!) He is sent to the torture chamber ("The Pit of Despair")and had all the "life energy" sucked out of him. When his friends find him, they think he is dead. But these friends kind of need him to be alive in order to come up with a plan to defeat the bad prince. So they take him to Miracle Max hoping for a miracle. Turns out he is not "completely" dead, only "mostly" dead and, indeed, a miracle might just work. Once the "miracle pill" is administered, only Wesley's mind works. He is completely paralyzed. They have to carry him around or push him in a wheelbarrow. Gradually, he gains strength and function as they storm the castle and face the prince.

So, how does this story fit me, you might ask? And you might also wonder why God would choose to use a Rob Reiner film as an example, but I digress. . .

Well, I've kind of been like Wesley. I feel like I've had the life sucked out of me, literally, by chemo. It is basically poison, after all. My friends and family have been pushing me around in a wheelbarrow and carrying me on their backs to get me where I need to go. The "miracle pill" of prayer has been administered and I am gradually being restored to health.

And now it's time to get out of the wheelbarrow. Time for me to sword fight and save the princess and ride off into the sunset. Or, just make dinner and teach M4 his alphabet and do laundry and get kids to and from practices, etc.

Scary stuff, I know.

I cannot thank those of you who have "pushed the wheelbarrow" enough for all you have done. I/We would never have made it without you!! Thank you for all the meals, all the rides, for helping me deal with my housework and my laundry.

And to those of you who "administered" the miracle pill of prayer. Please don't stop yet! Pray that my mind will catch up to my body's ability to function. It is still difficult for me to think deeply or multi-task. And please continue to pray for me and my family as we go through what I like to call "re-entry". As we re-learn how to get along and function as a family with a routine.

Thank you!! Thank you!!

Thursday, January 22, 2009

CT scan report

I heard from the doctor on Tuesday (Monday was a holiday . . .) that according to the scan I had on Friday the tumor has decreased slightly in size. It is not enough to change the treatment plan and reduce the area being radiated.

So, we continue with the same plan. Seven more to go!

Saturday, January 17, 2009

Halfway Mark

Yesterday marked the halfway point of my radiation treatments. Only 10 more to go!

It is going by so fast! But it is a relatively short treatment period.

I am very thankful that my cancer is not only extremely responsive to chemo (which is why I only needed six rounds of chemo) but also extremely responsive to radiation (which is why I need "low dose" radiation that translates out to be a short duration of treatments).

So far, the only side effect I am noticing (besides the large number of miles we are putting on our vehicles for the daily trek to the med center!) is a mild cough. So mild that I only cough three or four times a day.

And hopefully, having the weekend for my lungs to recover a little will make the cough go away, at least for a few days.

I had a CT scan yesterday to look at the tumor/scar tissue/whatever that is remaining in my chest. We will find out Monday if there has been any change. If it is significantly smaller they will redo my radiation plan and reduce the area that is radiated. Wouldn't that be great?!?

Thursday, January 15, 2009

My Imaginary Friends

Actually, I have lots of REAL friends. And family.

But they can't all come with me to the hospital or chemo or proton therapy treatments.

I do have jewelry that I LOVE that has been given to me by my friends and family. The sisterhood ring (from James Avery) my "Sweetarts" gave me just after I started chemo. My funky mother's bracelet that has all the M's names on it. My wedding ring (from my wonderful husband, of course!). Earrings from my parents and brother and sister-in-law. Rings from my parents-in-law. The "trust in the Lord" cross charm (also James Avery) and "faith" bracelet from my friend Danza. A precious "faith" charm from Teresa.

It is a daily ritual of sorts to select my jewelry for the day. And when I wear the jewelry a certain person (or people) have given me, I imagine they are with me. And in spirit and in prayer, I know they really are.

Wednesday, January 14, 2009

I am in denial . . .

I am one of those people that could listen to Christmas music all year long. My Christmas trees (we have five . . .)are still up in the house. And I still have a few Christmas cards left to send. SIGH!

But I figured it was time to "take down" the Christmas music and background on my blog. So sad!

If you are one of those people (like me!) who could listen to Christmas music in January (and February and March . . .) and miss my Christmas music player, you can always visit it here.

Monday, January 12, 2009

To My Second Born

Today is your eleventh birthday, my second born son.

When you were born, I thought I was the perfect parent, that I had it all figured out. How you challenge that every day!

You live every minute and emotion of life to the fullest. There is nothing half-way about you.

When you are happy, everyone around you is too. What an ability you have to make others smile and laugh. "Life of the Party" is a term made for you! Just tonight, as we celebrated your birthday around the table, you had us all laughing as you and your brother bantered back and forth regarding the story of "Squeaky the Rat".

When you are angry, everyone knows it. They can hear it, see it, and (sometimes) feel it. There is nothing subtle about it. No brooding. It is out there for anyone to see.

Your love is deep and strong. Despite the fact that I make you do math, practice piano, do chores, and all those other things you would rather put aside for something "fun" I know without a doubt that you love me and the rest of our family deeply. I can feel it when you take my arm and put it around your shoulder when we are at church. It is there when you insist on me coming to your room to say goodnight. And I love to see your love for your siblings when you play together or you are concerned when one of them is hurt.

I know you love Jesus. I believe He has had your heart for some time, but you made your public profession of faith to Him this year.

No one can argue like you. You don't let me get away with anything. You hold me accountable for everything! And becuase of it, you make me (hopefully) a better mother.

Happy Birthday!

Love,
Mom

Saturday, January 10, 2009

Random Picture Challenge



In cooperation with 4 Men and Girly Twins, here is the random picture challenge!

I went to my June picture folder and the 21st picture(supposed to do May, but it had the entire girls'softball team on it and I didn't want to have to get permission . . .)

What a great memory! M3 and I went on a Mother/Daughter overnighter - just the two of us. I surprised her one Friday afternoon when all the boys were "out" and told her she got to pick what we did for the rest of the day and tomorrow, too!

It was a little overwhelming for her at first. She's not used to getting to make many, if any, decisions without sibling interference assistance.

We went to dinner (her choice of places) and to a movie (her choice). Then we checked in at the hotel, where they knew we were having a special Mother/Daughter sleepover. At the registration desk they gave her a kid's bag and (best of all!) a bag of fish food for the koi that live in the atrium pond.

The next morning we went down for brunch. I sat and ate while M3 spent her breakfast time feeding/naming/talking to/drawing the fish.

Ahh, life before cancer . . .

Thursday, January 8, 2009

Hilar-ious

I was reading my friend, Darla's, blog post about "four children" the other day (see the blog "I Get To" on my left sidebar) and had to leave a comment. If you have ever left a comment on a blog or bought tickets online, etc. you have to "enter the word as you see it above" in order to prove that you are a real person instead of an automated system or something.

So, I typed my comment and looked at the "word" I am supposed to enter to have it approved for submission. The word was "hilar". I almost fell off my chair.

This word may not mean a lot to you. And it didn't mean much to me until August 23, 2008 when my family practice doctor called my to give me the results of my chest xray from the day before.

"Mass in the right hilar region". Words that have changed my life as I know it.

So I made a post-script comment on my comment to Darla's blog stating the fact that I had to type in hilar and how odd was that being that it was the location of my tumor.

Later, I got a response from Professor Darla (she really is, by the way) that was astounding:

What I also think is interesting is that what is one of the biggest obstacles you've ever faced - the tumor - is the Latin root word hilar which means "a little thing" or "trifle" and of course the root of our word hilar-ious. So, all that to say, I know it's not funny, I know it's very, very serious but maybe that puts a little spin on things to think..."My tumor is hilar-ious."

But the really great news is that God is concerned about all the "little things."


So this thing that has been such a BIG part of my life as of late is defined as a "little" thing. And, big or little, as Darla said, God is concerned.

Isn't it great?

Wednesday, January 7, 2009

Who Am I

I received this video from my friend, Sarah, months ago and have been meaning to share it here on my blog for quite some time.

God has reminded me of this as I have heard it twice now this week while waiting for my proton therapy.

It is AMAZING! Pause the playlist at the bottom of the page first, and enjoy . . .




Tuesday, January 6, 2009

One treatment down, nineteen to go . . .

After much deliberation, the decision was made. Proton therapy it is!

I think we spent a total of five and a half hours at the proton center yesterday. Luckily, it is a really nice place and very peaceful. They even play the local Christian radio station over their intercom.

We spoke to the nurse practitioner for around an hour about our concerns. She answered all our questions. (We were supposed to see the doctor, but not on the "schedule" and therefore, forgotten, until I went to the desk to remind them I was supposed to see the doctor. By then, he was gone for the day.)

She showed us pictures of the CT scan of my chest with the areas that would be "hit" by the radiation and at what doses. We were pleased to see that all the remaining tumor was well covered with radiation, while much (but not all) of my heart and lung is spared.

The clincher for me was when the NP explained that they had considered drawing up an IMRT (the other type of radiation we were considering) treatment plan to compare with the proton plan but it was clear to them that proton therapy was clearly the better choice. Dr. C has been a radiation oncologist for a long time. And I believe if it had been a "close call" or a "toss up" he would have drawn up the IMRT plan.

So, I had my first proton treatment last night. I will have a treatment every Monday through Friday for the next four weeks. For the ten to fifteen minutes I am laying on the table I will be praying that God shields my heart and lung.

On the way home last night, Don and I talked about being a "pioneer" as a lymphoma patient receiving proton therapy. That hopefully, me receiving this treatment will pave the way for it to become accepted as "standard of care" and that many more patients will receive the treatment in the future for their lymphomas.

This morning, I was thinking about those who have gone before me in the treatment of lymphoma. Not too many years ago, Rituxin, one of the drugs I received during my chemo treatments (and will continue to receive, every six months, for the next two years) was not "standard". Thankfully, now it is. And it played/will play a hugely important role in killing my specific type of cancer and keeping it dead. I am SO GRATEFUL for those willing to take a chance on something new. It has and will benefit me greatly in the course of my treatment.

Thanks also to those of you praying for us yesterday. It means a lot to us!

Sunday, January 4, 2009

Radiation Decision

Sorry for the lack of updates as of late. I thought the proton therapy thing was a done deal, but it has been very complicated. And we still have not made a decision.

The decision WILL be made tomorrow and I wanted to give you all a brief summary so that you could be praying for Don and me as we decide.

Monday, December 22 we went and met with Dr. C at the Proton Center to discuss my eligibility and answer any questions we had about it. We were comfortable and excited and said "yes" this is what we want to do.

They took me down for my planning session. I was scanned and marked. (They used the tattoo marks I already had and added some sharpie marks of their own as reference.)

Then we saw a research nurse who asked if we would be willing to allow them to collect data from my labs and regarding my side effects for future research.

Easy, right?

The next day, we went to see my regular oncologist, Dr. M, for a followup visit after completing chemo. We explained to her that we had decided to go with proton therapy. How we were looking to reduce the risk of long term side effects from radiation, specifically to my heart and lung. She was surprised, but did not have much to say about it at the time.

On the way home, Dr. M called and explained that she had called a radiation oncologist friend and talked with her about proton therapy. This doctor was surprised as well as it is not the "standard of care" for lymphoma patients. She presented me with some questions to be sure we had answered regarding proton therapy so that we could be fully informed.

Well, this goes on for the next week: me calling the proton center, the proton center calling Dr. M, Dr. M calling another radiation oncologist, the proton center calling us, us calling Dr. M. Whew!

So, tomorrow, we are meeting with Dr. C at the Proton Center one more time to be sure that ALL our questions are answered and that I/we understand what it is I am getting myself into here with the proton therapy. That appointment is at 2 p.m. and my first treatment is scheduled for 5 p.m. Obviously, we have to make our decision by then.

We have postponed my other radiation start date by one day as we attempt to make this decision. If we decide NOT to go with the proton therapy, I will start on Tuesday at 2 p.m.

Either way, I will be done the first week in February.

Thanks for your prayers!