To chemo or not to chemo

 

I had planned to do a blog post two weeks ago.  The afternoon of my biopsy result seemed like the perfect time. I would have had a chance to talk to my doctor and I could fill everybody in.  I don't know what I anticipated hearing.  I do know it wasn't what I heard, which was this: "Without chemo, you have six months to live."

"You have six months to live" isn't something I could just run out and post.  That's the kind of thing you have to tell your kids about first.  You have to call your parents.  And I wanted to find out exactly what it meant.  If it was six months without chemo, what would with chemo mean? 

Just last month I had been questioning the wisdom of renting an apartment without an elevator, but I hadn't been questioning the wisdom of seeing myself alive in it.

 

   

 

During the doctor's appointment a couple of weeks ago, the Palliative care nurse was talking to me about pain meds.  She wanted to put me on morphine.  The doctor asked Marc to step outside the exam room with him so I could talk with her about dosages.  

When he took Marc outside he asked, "How are you holding up?" And, "Have you called hospice?" Marc said, "Well, I thought hospice was for when you get around the 'six-months-to-live' time frame."  "That's what I think we are looking at," said my doctor.

Meanwhile, in the exam room I was learning about morphine.  I was to get a slow-release capsule every 24 hours and a shorter-acting liquid every four hours for breakthrough pain.  The nurse went to finalize the prescription, leaving me alone in the room for a few minutes until Marc came back.  His eyes were red and he told me what the doctor had said.

Then the doctor came back in and offered clarification.  Without chemo he thought we were looking at six months. He couldn't say exactly, but he was thinking on the order of months because of how fast the tumor was growing.  He also saw new growths on the left side on my throat as well.  He made sure to say that while chemo can't cure oral cancer of the tongue, it may slow down some of the tumors and can help with pain for that reason.  He wanted us to make sure and talk to the oncologist that day.

 

The oncologist examined me and gave me her recommendation of a mix of three chemo drugs, based on results of recent clinical trials.  The drugs would be administered once a week.  Each visit to oncology would take over half a day.  It would take about two months before any results from treatment could be assessed.  She went over all of the possible side effects.  Every patient is different, but everyone suffers from at least one of the side effects.  

A few of the side effects include: nausea and vomiting (vomiting is scary with a trach), facial rash - particularly around the mouth and chin, thining hair, sore throat, hearing loss, and nerve damage to hands and feet.  The oncologist said to take my time, think about it and let her know if it was something I wanted to consider.  She said she would completely understand if I decided not to get chemo.  There is no guarantee of benefits.  From what I have read so far, the average person lived an additional two months with Palliative chemo.  There is nothing I have found yet about their quality of life during that time.

I had Marc call Matthew and I talked to him as best as I could.  Marc spoke to both sets of parents. We waited until Natalie came home from school for spring break to tell her.  We didn't want to tell her before then and mess with mid-terms. 

This week I plan to check out studies and make a decision one way or another about chemo.  It would be one thing if chemo had even some hope of curing my oral cancer.  It works better for cancer at the back of the throat or the base of the tongue.  Mine originated in the front part of my tongue.

I've spent as much time as possible with family and friends lately.  Last week Marc and Natalie and I went to Florida.  Natalie and I stayed with my dad and stepmom.  Marc had a Navy Reserves conference, but was able to get over to see us for a couple of nights. My sister met us down in Florida as well.

Both of my brothers have come to see me, as have dear friends from Chicago. 

Matthew got permission from his job to work remotely one week a month.  He'll be able to work wherever I am for a week each month this spring and summer.  Thank you, Accenture!

I'm feeling very blessed with supportive people in my life as I decide what to do next and navigate the months ahead.  I'm mostly trying to be as cliche as you can get: Living each day to the fullest and letting people I care about know I love them.  I can't think about my life in terms of a certain number of months because they really don't know for sure.

Recently the thought of dying really hit home, however.  I was getting a replacement drivers license because I had lost mine in the midst of hospital trips in December or January. "Would you still like to be an organ donor?" the DMV employee asked me.  "Uh, sure," I said.  Always before when I had filled out the card it seemed like an academic exercise for the long distant future, not something that could really happen.

 

Days with flowers are always a bonus.  Thank you for the beautiful bouquet, Fred and Robin!

Comments

[ellen]

Hey Seester,

It was sooooo great to see you and Natalie et al during spring break in FL, and our little road trip to Cape Coral to see your friend Lynne and her hubbie turned out to be fun, they've got an awesome vacation place. The little sign she made for you in the front yard was so cute and thoughtful!

Whatever you decide about chemo, I'm behind you. I just found out the other day that my friend Julia at the horsebarn (you might remember her from the day you and Matthew came out to my riding class to see Willow) also had a brother who had oral cancer in the front part of his tongue just like yours. So many people's lives are touched by cancer.

Your flower photos are lovely as ever, a sight for sore eyes until spring gets here! :)

love, hugs,

Ellen

[Connie]

Dear Lisa, You know that whatever your decision, Lou and I will be with you 100%. With much love,Connie

[Barbara Eldridge]

Dear Lisa:
How wonderful that Matthew will be able to be with you for a week each month.
All of us who love you want the very best for you and will support your choice.
We are having a spring day in Red Wing with 50F temperature(when the postal carriers here start wearing shorts!) and brilliant sunshine!
Life is precious.
I love you,
Mother

[Sue Ferrell]

Dear Lisa,
I was struck by your mention of the cliche of living (I first accidentally typed "loving" instead of "living"--how poignant and appropriate)life to the fullest, and thought that most of us don't ever do that--but you are one friend that I've thought always has. When we came recently for our most wonderful visit, I was struck by a particular carving in your beautiful handmade table: "Life goes by pretty fast. If you don't stop and look around once in a while, you might miss it." See, I told you, my precious friend--you always have. You have touched so many lives in such a special way, not only through your beautiful blog walking us through your journey with the evil of cancer, but through the way you have always lived your life. May God guide you in your decisions in the days ahead, and may He wrap His loving arms around you and give you respite from pain. And you've taught me well with another of your carvings: "Life is full of joy." May you continue to feel the joy.
Love,
Sue

[Laura Moore]

Many of us don't know how strong we are until we are faced with life's challenges. You have proven your strength over and over again. You will make the right decision for yourself and know that you are loved and supported by your family and friends in whatever you decide.
Love,

Laura and Sara

[Ann]

We love you, Lisa!

[Sandy Jelm]

Our love and prayers for you remain constant, dear friend.
Sandy & Family

[Virginia]

Whatever our situation, we live life one day at a time and take one step at a time. I heard a quote (from I don't know who) that "the highest wisdom is continued cheerfullness". You are a wise woman - and I am too! I can't wait to see you.
Virginia

[Joan]

Lisa - Thinking of you and happy to hear you are spending time with family and friends. Our thoughts and prayers are with you.
Love Jim and Joan

[John]

Lisa -

I just heard about you the other day though your Uncle Jim, a high school classmate of mine. I played golf with your Dad once.

Your Uncle highly recommended that I read your web site since I have a blog as well. He said you are a very special woman and a great writer - he is right.

After hearing about you and reading your latest posting, I posted something on my blog with you in mind. I thought you might want to read it. ( http://latenightmusings.com/2011/03/15/science-and-time-does-not-conquer-all.aspx )

Although we have never met, you are in my thoughts and prayers. You give us all strength.

John

[Liz Hartnett]

Dear Lisa,

You have touched so many people with your life and insightful blog. I wish I had some answers for you. My time as an oncology pharmacist did not provide me with answers for my sister-in-law (Jim's sister who died 4 years ago of ovarian cancer). I think of Peggy often when reading your brave and open blog. She would have been your greatest supporter and was also a fighter and lover of each day as you are. Her favorite saying, which was on a pin I found at an oncology conference, was "Cancer Sucks"! It certainly does, actually an understatement.
You have our love and prayers on your brave journey.
Love, Liz

[Kathy]

Dear Lisa,

I love you Lisa! You are one of the most amazing people I have ever met. I love that you are living each day to the full and know that there is no expiration date. I believe that life goes on! KT

[Barbara Eldridge]

Sweetie:
Ann just sent you a whole garden of spring flowers on House of Estrogen!
Love,
Mother

[Dorrie Lee]

Lisa,

I can't imagine having to make the decision you are faced with, but feel you will make the right one for you.

Please know that our love and prayers are with you, Marc and the kids at this time.

Dorrie and family

[Joe Ellen Rast]

Lisa:

Just wanted you to know I have been reading your blog and you have been in my thoughts and prayers. You are a terrific writer and photographer - I love the flowers. "This side of the family" is thinking of you, Marc, and your children.

Joe Ellen (Dorrie's sister, Michele's Mother)

[Nora Van Ham]

Dear Lisa,

Your brave and beautiful blog has touched my soul! We will remember you and your family in our daily prayers. I'm sure you will find the answers you're looking for, as your eyes are wide-open. I remember our time in the bleachers at BHS fondly (as you were preparing for your move). Let Faith, Family & Friends provide strength when yours is wearing thin.
Fondly ~ Nora & Rich Van Ham

[Sarah Mills]

Dear Lisa,

I read over others' comments here, and can only say that each one - and all together - voice my own thoughts and feelings. You may have made your decision about chemo already - whatever it is, I totally support it. I think of you so often every day, with much compassion, love, respect, honor, and pride and gratitude for counting you as a very special part of my family. The amazing person you are makes you an amazing writer with amazing gifts to share with each of your readers. We so appreciate your beautiful blog.

Love,
Sarah and John

[Patricia Richardson Weaver]

Dear Lisa,
I heard from some of the "hood" ladies - The Gardens of Eagleview that you had a blog. Never in my life have I ever been so touched by your journey that you are going through. I now only wished I had gotten to know you better while living in the neighborhood. You are an amazing woman. Words that I am thinking about at this moment is "God grant me the serenity to accept the things I cannot change.... You are in my thoughts and prayers.
Pat Richardson Weaver

[Dave and Cindy Yost]

Dear Lisa and Marc,

We continue to think of you all on a daily basis hoping and earnestly praying for you all. There is truely nothing that can be said that fully expresses our sadness at some of the news. We are equally inspired by the strength, grace and obvious love that you all have for each other.

Dave and Cindy

[Mike Boudreau]

Lisa, I want to thank you for letting me take your husband out recently for food and drinks to discuss some our old Chicago basketball playing times while I was visiting the Philadelphia area recently. Marc's a great guy, and we all miss him back in Chicago. I will promise you that if he so wishes, I will keep in touch with him in the future because I value his friendship and hope to be there as his friend if needed. As far as your difficult situation, I can not come to even try to understand the heartache and challenges you have already addressed. What I do know is that I played basketball for many years with your husband and son Matt, and regard them as strong, smart, and caring men who you completely influenced. It has been my pleasure to be a small part of their lives. I going to try not to be trite, but we can only hope wih our time in this world that we enter it and do our best to help make it a better place when we leave...I've seen personally amazing evidence that you have far surpassed this by leaving a strong family with a legacy that will live on for generations. Thank you for letting your family be a part of my life.

[Sandy Jelm]

If only I could, dear friend, I would gift to you so many things. May God provide for you His gift of perfect peace. Be assured that the vibrant and enriching gift of your inspiration will forever resonate within all of us who have been blessed by your profound influence in our lives. With deep love and affection, Sandy & Family

[Carrie Scalcucci]

Dear Lisa and Marc,

We have all missed you and Marc here in Batavia so very much. There is not a day that goes by when I have to go in Jack's closet for one thing or another and pinned to the wall is the big bulldog paw you drew for each basketball players' door. Yes Lisa, your ray of sunshine was always felt when you walked in the door, the gym or at One East. We love you.
Carrie and Steve Scalucci

[dana darnell]

Dear Lisa,

My life long friend was here this past weekend and I shared your blog with her. She is a cancer survivor, and can identify with much of what you have experienced. She, too,is living each day as if it were her last, and grabbing up the joy of love, friendship, her children, and flowers. I took her to Longwood and we soaked up the beautiful sights and aromas. As I wake this morning, I am thinking about and praying for you. There is no right or wrong decision, only your decision.

[Elizabeth Wray]

My darlin' friend,
You are "Mana" for me. I am so grateful for the days we just shared together.
Love, Beth

[Cheryl and Geoff Grant]

Lisa, Mark and family,
Just wanted you to know that we think about you daily and send our best wishes to you all. Geoff would like to give Mark a call but isn't sure when it's a good time for him.

We send our love and healing hugs,
Cheryl and Geoff