It’s Only Hair (and That's Only My Eye)

Following the first two rounds of chemo, (with the stuff that didn’t work), my hair didn’t fall out.  Since 99% of chemo patients lose their hair, I had prepared for it to fall out by picking out a wig and I had a plan – when it started to fall out, I’d go in, get my head buzzed, and have my wig fitted.  But after weeks of no change, I was thinking that I was going to get to be in the elite group of 1% of chemo patients that doesn’t lose their hair. 

Then…that damn Docataxel.  I am told that everyone on Docataxel loses his or her hair.  So…15 days after my first treatment, it started falling out.  Even though I was expecting hair loss, I didn’t expect it to start the day my Omaha friends came in.  It’s impressive how quickly it falls out once it starts and rather than having my hair fall out in a trail behind me, I wore a bandana.  Nathan said I looked like Rosie the Riveter:

 "Can Do!"

I tried to make an appointment for head buzzing and wig pick up as soon as possible.  The soonest I could get in was Monday, 3 days after the onset.  My friends Brigid, Kelly and Pat came with me for the ceremonial head buzzing.  

My short buzzed hairs will fall out until I am cue ball with a face. Right now I don't mind a buzzed head, but I won't like being a cue ball...so here's my wig: 

This next part, you won’t believe:

The wig stylist trimmed my wig and the last snip was to clip off a hair that was hanging near my left eye.  As she made the last snip, she accidentally poked me in the eye.  If Brigid, Kelly and Pat were not there, as my witnesses, I, too, would not believe it happened.  Immediately there was a blood bubble on the white part of my eye and it felt like I had a foreign body in my eye whenever I blinked.  It was decided that I needed to see an eye doctor ASAP.   To make a long story short – the scissor tip went into the outside layer called the conjunctivae, but not through it.  At least one, perhaps two, small blood vessels were pierced.    I was given an antibiotic eye drop to use for the next several days but the prognosis is excellent.  Yesterday and today the white part of my left eye looks like I drank too much and have a blood-shot eye.  The pain is minimal and has gotten better throughout the day.  Again…can I please catch a break?!

Omaha Friends

 

When it comes to friendships, I have been extremely lucky.  It’s no secret that to have good friends one must be a good friend.  Some would even say that there’s very little luck involved in building friendships.  However, I do feel very lucky to have been able to surround myself with friends that are as interested in where I am and what I’m doing as much as I am interested in them.  Over the years, I ‘ve had circumstantial friends– they’ve come and gone.   I also have dear friends that stay with me forever.  Today, I’m writing about my junior high and high school forever friends from Omaha.  Not all of them could make the trip this past weekend, however, four of them traveled from Omaha and Nashville to see me and we connected with another who lives in the area. 

Kathy arrived on Thursday, while Dan, Tom and Kerry came on Friday.  Friday night we went to La Tasca, one of our favorite tapas restaurants. 
 

Saturday morning, everyone came to our house and hung out.  We talked, laughed, played Qwirkle, laughed and then laughed some more. 

 Kathy, Tom, Dan, Kerry, and Wynn

 Our Qwirkle board...isn't it pretty?!

Later Saturday night, our other classmate, JoAnn and her husband Howie, came over and we had a potluck dinner.  Everyone contributed food, drinks, stories, laughter and friendship. 

 Note:  JoAnn's flourless chocolate cake, decorated with our high school and mascot:  Go Central Eagles!

Although I hate my illness, it is because I am sick that my friends came together to see me.  This group of Omaha friends are wonderful folks who take care of and look after each other.  We have been friends for over 40 years….let me repeat that….over 40 years! 

The Aftermath of Docataxel

Sorry I haven’t written for a while. A friend worried that I’m not well enough to write. My lapse has been a combination of being busy (working, doctors’ appointments, etc.) and a lack of energy.  

Shortly after my third chemo session, the first treatment with Docataxel, I had  a very rough time.  I was warned that Docataxel would leave me feeling like I was at the height of the flu for 4-5 days.  I would say that is a fair description.  Docataxel left me with constant achiness and headache, GI problems, brutal mouth sores, a day of fever and again, undescribable fatigue for 11-12 days.  On Day 11, I called to make an appointment with my local oncologist to discuss my chemo options.  I had decided that having cancer was bad enough.  Despite promising myself that I’d continue any treatment as long as it was helping, after nearly two weeks of feeling like crap, I had decided I would not do Docataxel again.  I was willing to try other chemos or other treatment ideas.  I just could not picture myself having to get another Docataxel dose while still recovering from my first dose.  However, on Day 12, I woke up with a lot less pain and discomfort.  Day 13 brought me more energy, and by the time I met with my local oncologist on Day 14, I felt pretty good.  He and I still discussed the side effects and strategies for minimizing them, but I did not bring up the notion that I was not willing to do another round of Docataxel.   

I’m committed to one more round (this Friday)...at least.

A Valentine’s Day Liver Biopsy

A few weeks ago, knowing that Valentine’s Day was coming up and that I wanted to do something really nice for my Valentine, I struggled with what I could realistically do.  When one has cancer and things aren’t going as expected, planning a weekend away isn’t possible.  I’ve been so preoccupied the last couple of months that I didn’t make a dinner reservation at a cool Chicago restaurant and now, it was too late.  Heck…I couldn’t even count on myself to feel well enough to make a nice dinner for him.

And then…

Two weeks ago my oncologist called to cancel my original repeat liver biopsy appointment because I was on a medication and a chemo drug that increases the risk of bleeding during any surgical procedures.  I had to wait another 10 days until I could safely have another liver biopsy. My oncologist and I wanted to have the biopsy as soon as possible.  The first day I could have it?  Of course, Valentine’s Day. 

Being overwhelmed with our lives and the new biopsy date, presented a Valentine’s Day plan dilemma for Wynn, too.  We talked about it and decided that we’d get ourselves a new TV and sound system for our family room for a Valentine’s gift to each other – we have wanted to do this for years. I did the online research for the right size and quality TV, as well as, price.  Wynn purchased it earlier this week and next week, some geeks are coming to install everything.  Done…right?  Nah…I still wanted to do something small to surprise him. 

Yesterday, February 14th, Wynn and I got up early and by 8:00 A.M., I was in the Interventional Radiology procedure room ready to go.  I wanted my doctors to get a lot of tumor tissue this time.  I don't want to have another biopsy and since I have plenty of tumor – I told them to take as much as possible.  It turns out, like everything, it's not that simple.  The more you mess with the liver, the higher the risk of complications.  Using an 18-gauge trocar needle, they took out two 3-inch cores and were able to prepare 12 tissue blocks.  (This info is for my medical friends.) Eight of 12 blocks had adequate amounts of tumor and will be available for genetic testing, which is great!

When I came out of the procedure, Wynn left to go to work and Nina was with me.  I was observed in recovery for four hours.  On our way home, Nina and I stopped at Mariano’s, a fancy-ish market in our area.  Mariano’s has a gelato bar and I decided to get Wynn a Valentine’s surprise there since he loves coffee gelato.  But…when we walked in, the featured veggie at Mariano’s were Brussels sprouts.  Wynn loves coffee gelato, but he LOVES-LOVES Brussels sprouts.  (I'm only so-so about Brussels sprouts and don't make them often.) Of course I bought some and roasted them for dinner last night, (along with gluten-free lasagna from my wonderful sister-in-law, Debbie.) Wynn was so happy! 

This morning when I was scoping out our ‘frig, I noticed the Brussels sprouts are all gone and the coffee gelato is untouched.  I hope you had a good Valentine’s Day, Wynn.  

Surprise tulips from Wynn and surprise gelato to Wynn.  No

Brussels sprouts left to photograph. 

On A Roll

I had a doctor's appointment today and also had my blood drawn to see if I'm OK for my liver biopsy appointment scheduled for tomorrow.  Platelets and all other blood work are fine and I'm going tomorrow morning for my procedure.  

The liver biopsy will be sent out for pan-cancer testing...the test that I didn't want to have several weeks ago (...before I learned that my first chemotherapy regiment wasn't working.  See Blog #9 "WWYD...What Would You Do?)  The results take several weeks to return and those of you who know me know that I'm not very good at waiting.  

Finally...A Small Piece of Good News

Today I went to the ophthalmologist for a follow-up visit for the cotton-wool spots on my retinas.   The exam showed that the spots are diminishing in intensity and number...YIPEE!  So despite my disease progression, the lesions in my eyes are getting better.

Tomorrow I have some blood testing to make sure my platelets and other clotting factors are within normal ranges.  If so, then I'll have another liver biopsy on Thursday. (Busy week.) Let's hope that good news begets good news!

My New Mantra

As explosive and poison bombs were falling on major cities in England during WWII, the British government issued a propaganda campaign that included posters saying “Keep Calm and Carry On.”  My good friend, Anita, recently reminded me of this sentiment.  This past week, since learning that my initial chemotherapies were not consistently working to stop or slow the disease progression in my liver, has been a very difficult time for Wynn, our kids, and me.  I have felt like my world is being showered with explosive and poison bombs.

My clinical picture is inconsistent.  Although the primary tumor in my lung is measurably smaller and all of my liver enzyme tests have improved (some returning to within normal ranges), the tumors in my liver and bones are larger and more numerous.  The inconsistencies made us wonder if I wasn't giving the initial chemotherapies enough time, which started a cascade of phone calls, appointments, emails, and online searches for information to help me to feel OK about moving onto a new chemo drug; one that will focus more on my liver, but which is more toxic and has scarier side effects.  (Didn’t think that was possible.)  The new chemo, I am told, will “kick my ass.”  My hair will definitely fall out, which amazingly hasn’t happened yet, and the recovery after chemo will be tougher and longer.

The opinions of 3 oncologists were consistent, however.  They all suggest moving onto the new chemo because they feel the advancement in my liver needs to be addressed.  All have indicated that if I have a strong need/desire to continue with my initial regiment for 1-2 more rounds I “wouldn’t lose much”.  Based on their input and Wynn’s research, I’ve decided to move forward to the new chemo.  That happened earlier today.

Wish me luck as I keep calm and carry on. 

When the Going Gets Tough...

 

…the Tough Go Skiing!  Earlier this week, for the first time this year, our area got enough snow to cross country ski.  The first day, Wynn went out with our cycling/skiing buddies, Ann and Mike, without me.  Hearing how beautiful it was in the forest, I wanted to go out so badly.  So, the next day, Wynn, Brigid and I went out.  I wasn’t able to go far or fast, but being out skiing on a crisp, winter day did me a lot of good.  It was great…Brigid stayed with me and Wynn could take off, here and there, for a quick aerobic burst.  For that time, I didn’t feel sick. Can you imagine...I didn't feel like I have cancer?!  Amazing.

Two days later, Wynn and I skied again.  I know that Wynn loves to get a good workout when he goes out to ski, but he stayed with me and barely broke a sweat.  I love my husband.

A Visit from UC Berkeley Pals

This past weekend, two dear friends, Annie and Stefanie, from graduate school came to visit me.  Since our days at Cal, we have made the point of seeing each other and staying close.  We had a wonderfully low key, but very fun time together.  Laughing a lot is always requisite.  Along with Brigid, Jerry and Cathy, we all watched the Super Bowl game, rooting for the 49ers…except Nathan.  Everyone cooked, (except me) and we all ate too much.