Decisions, decisions, decisions...

Cancer is a roller coaster ride of emotions and it's not an easy one.  I know that many have commented on my positive attitude and how I keep going.  I know my faith has a lot to do with it but honestly I do have those down moments and the last few weeks has seen several of those. 

As I mentioned in my previous post, the results of my latest scan were mixed with further progression of cancerous spots in my liver.  My oncologist in consultation with the breast cancer oncologist at Santa Clara Kaiser have recommended switching to one of two different drugs.  Still chemotherapy and still attempting to get at those rogue cells that won't go away.
After my research, discussions with Mom, discussion with my support group, and asking one of the oncology nurses I've known for 8 years what she observes with the two drugs, I will be switching to a new chemo on January 3.  Taxotere every three weeks with an infusion time of approximately one hour.  It's a stronger drug with more severe side effects (going bald in January is going to be cold). Hopefully it will do it's job and knock those cells down so I can move back to a drug that's more tolerable.

Each change gets more challenging as this is now the 12th different treatment that we've tried.  The reality is my choices are more and more limited as there's nothing new on the horizon for my type of cancer despite the commercials on TV. 

Meanwhile, I will keep plugging along...Happy Holidays, Merry Christmas. 

Just when I think...

Just when I think I have my doctor figured out, she sent me results early.  They're mixed results with progression in liver and lymph nodes but stability in bones and previous spots on liver. Once again it's decision making time.  I see her Thursday, so hopefully I will have some clarity by then.  My head has been spinning and emotions are erratic but by Thursday I hope that I will have processed enough to have a good conversation with the doctor.  On Saturday, I posted on Facebook that my grandmother had been on my mind and added some pictures of mementos I have from her.  Her Bible is full of scraps of paper--recipes, obituaries and random quotes.  This one was there Saturday afternoon.  Hmmm, she must've been sending me a message.

Time keeps on...

I haven't posted in awhile mainly because time just keeps marching on. I had a post in my head since the end of October when my 8th anniversary of dealing with this metastatic disease passed.  I was going to be reflective and then the time passed and I didn't write the post. 

Today was my three month pet/ct scan.  The rain and wind were blowing and the trailer with the scanner at San Jose was definitely shaking.  Others refer to this time as "scanxiety" as I wait for results and the mind goes to all the what ifs.  I've told a few people that after 7 years with Dr. J. I know her pattern.  If it's good news, I'll get an email Friday or Monday with the results.  If it's mixed results or bad news, she'll wait until she sees me face-to-face next Thursday afternoon.  Meanwhile, I wait.  We know my tumor markers have been inching up,  but overall I feel well and have tolerated the side effects of this chemo.  My hope and prayer is that I can keep on this regimen for another 3-6 months, but we shall see.  If not, changes will come in January because I won't change before the end of semester and Christmas.  I've learned that one month doesn't make a significant difference in treatment overall. 

While the damp weather makes the bones ache a little more, I'm so grateful for the rain that cleared the smoke and quashed the fires.  It's amazing how many people I know with a connection to the town of Paradise.  My own college memories are very connected to that town with one roommate that grew up there and another that lived and worked there for several years and started their family there.  I have been so inspired by the many stories of kindness that have risen from such tragedy and it gives me faith in humanity.  Also, it puts my own life in perspective.  Everyone has something and we just have to keep moving forward the best we can to our own abilities.  With help from my own faith and my loved ones, I am lucky in so many ways.

I'll post once I know results.  Meanwhile the sound of rain while I'm warm and dry inside sounds lovely. 

Round 4, more scans and some random political thoughts.

Round 4 of the IV chemotherapy completed today.  6 more days of the pills then the next two week break.  Both weeks have gone as expected and no significant changes in the side-effects.

When I met with the doctor last week, I expressed concern over shortness of breath and leg swelling.  To be safe, she ordered an ultra sound and CT scan to rule out any blood clots.  Both tests came back clear.  (Prayers answered for sure!)  I will self-diagnose the leg swelling due to the heat and excess weight I've added with these latest drugs and the shortness of breath to the crappy, smoggy, smoky air we've had in the valley the last few months.  Definitely, a sigh of relief that there isn't anything else going on.  Hopefully fall will bring better weather and clearer skies.

On to some random off topic thoughts that relate to current politics, so feel free to stop reading at this point.  Dr. Ford that has come forward with a high school allegation against the Supreme Court nominee Brett Kavanaugh has come under fire for how could she possibly remember something like that from 35 years ago.  I have two stories that don't come close to hers but are my own moments about interactions with men of previous eras that were raised with "boys will be boys" attitudes.

The first incident was in 5th grade when I first started wearing a bra because I was developing.  One day at recess a boy (yes, I remember his name but won't state it)  in front of classmates asked "are you a turtle?"  Introverted, naive me replied "No". He proceeded to snap my bra strap and said "then why do you snap" to laughter of classmates.  I didn't report it.  I don't know think I even told my parents because I was embarrassed.  Others were there that will never remember it happened, but it had a life long impact on me. I avoided him throughout the rest of our school years as much as possible.  But he was such a "nice little boy"...

The second incident was in my first year as a 22 year old teaching in a male dominated math department with only three other female colleagues that were 10-20 years older than me.  The communal office was decorated with posters from X-rated movies with disgusting pictures.  They had hung there for years and the men saw nothing wrong with them and even when it was brought up in meetings, they had no intention of taking them down.  (One teacher also had St. Pauli girl posters decorating his classroom and no one made him take them down either.)  My second year, I couldn't tolerate the posters but there was no avenue for sexual harassment or filing complaints in those days.  So I went in one weekend and in a passive/aggressive move, took them down  They were ticked off, but I never admitted it then.  My female colleagues knew I did it, but we all took the flak. "Good ol' boys" considered "great teachers" that didn't think there was anything wrong with their behavior.  Again, a profound effect on my perception of some of my other male colleagues over the years.  

My point with these two stories is that YES we remember in great detail things that happened to us in our younger years even if it had little to no impact on the persons that did it.  They may have been acting in what was considered acceptable male behavior in the 70's and 80's.  It doesn't make it right and with a lens of continued inequities in our world, we need to acknowledge and move forward to do better!

Scans, Loss and Legacy

Morning sunrise out my front window.  

First off, I got my scan results yesterday.  They were mixed as some new lesions have appeared in the liver, but old spots in liver, lymph nodes and bones remain stable or improved.  My doctor and I have agreed to stay on this treatment for another three months and see what my next scan in December shows.  The side effects from this set of drugs has been manageable and the limited work schedule seems to help with the energy on the days I am at school. I am very grateful for Liz who's subbing as I know the library is in good hands, and she does some of the tasks I never quite have time to complete.  680 freshmen rotated through the library over the last month with their English teachers and learned what all we have to offer them.   Some individual teacher/class presentations until October when the PE classes start rotating through the library with their 9th graders.  I love the chance to teach so much in the fall.  It's one of the best parts of my job!

On a different note, there's been too much death in my life lately and it brings the reality of this disease just that much closer.  It's also made me reflective on legacy and how I want to be remembered.  (Not that I think it's coming soon!)

First, one of my mom's first cousins, Elspeth passed away shortly after being diagnosed with cancer.  She was 80 years old and had persevered with many health challenges over the year.  She was a cousin that always held great mystique for me.  I was six years old when she left the US for the South Pacific to teach school on the island of Kwajalein as a single woman.  She was always Mom's "exotic cousin" to me even after she returned to mainland and settled in the Monterey Bay region.  After Mom retired she and another cousin would meet regularly for lunches and sometimes I would be fortunate enough to join them.  Their stories of growing up in Oregon and lives beyond are beautiful memories.  Elspeth's memorial service won't be until Sept. 22, but if her 80th birthday party to go by, it will be well attended with some amazing stories of her legacy.

Second, one of the women in my support group passed away in July.  Her memorial was a few weeks ago.  I attended along with three others in our group.  It was a beautiful service.  Her sister held up a prism when she spoke and it made me think of all the different facets of this woman's life.  We knew her as a fellow cancer patient but others knew her before that facet developed.  The stories were fascinating--tango, computer expert, detail oriented sister and so much more.  The reception room had a table of memorabilia including photo albums from childhood on, that she had meticulously chronicled who/what each picture represented.  My apologies to my nieces who will most likely find mine; they aren't that well documented and I don't know that they ever will be.  

Third, the neighbor across the street from my parents died on her 94th birthday.  My parents have lived across the street from her since the 1970's so this is a long time relationship.  Her oldest daughter and I went from 3rd-12th grades together.  The youngest daughter faithfully lived with and took care of Mom since her husband died 10 years ago.  What a life she lived.  Her services were last week and also revealed the many sides of this woman.  I'm glad I took the time off to attend her service since Mom and Dad were traveling.  I got to catch up with my parents' neighbors I wave at when I'm headed in to Mom & Dad's and acknowledge Connie's life to her two daughters.  

Then on the periphery are two others in the support group earlier this year that I didn't know as well but still impact.  A long time district employee that I didn't know but the tributes to her that circulated were touching and illustrated what an impact small things can have on others.  Then there's John McCain's death that dominated the news.   His legacy and impact have certainly been illuminated.  Aretha Franklin's 9 hour memorial service has to be one for the history books.

So what does all this rambling mean?  I'm not sure.  The sun will rise again tomorrow and I will continue on this roller coaster ride.  It's just been in my thinking.  As someone who knows this metastatic disease will eventually bring on my death, I can't help but wonder how others will remember me and how do I want to be remembered?  I'm not asking for accolades and comments.  It's just something I'm pondering with this season of loss.   


It's enough for now, I'm ready for some happier events.  Anyone want to announce an engagement, pending birth or other happy event to celebrate please do!

Round 3 & School Begins

This is the way I spend much of my recovery days after chemo.  Sitting in my recliner with the cat sleeping at my feet.  Round 3 of chemo is done and my next PET/CT scan to see if this is working will be September 6 with results on 9/12 when I see the doctor.  I am grateful that the side effects of this chemo are manageable and I can function "normally" as possible on most days.  Also, being able to attend my support group at Cancer Carepoint on two Thursday's a month is critical to my mental health.  The meditation classes I took there this summer have been very beneficial and I'm hoping to continue making it a regular practice every morning to start my day.   If you know anyone dealing with cancer in the Santa Clara County area, I highly recommend their services.  Everything is free and the provide a wealth of support for all stages of cancer and for caregivers too.

School has started and I've worked 4 of the 7 days we've been in session.  It's weird to not work full time but the days of rest are critical and even in the short time we've been back I can tell the difference.  Actually, I "worked from home" both Thursday and Friday this week spending a few hours each day doing computer work that I can't get done at school.  Graded the first 10 classes of Freshman Library Orientations that I taught Monday-Wednesday.  Also, worked on my Mission College Online course that I'm teaching again this semester that starts today.  So I may be off campus but somehow I still work a little bit.  The difference is that I can take breaks as I need to and wear comfy clothes and no makeup and hydrate fully to flush those chemicals. 

Rest, Relaxtion and Back-To-School

Mom and I had a lovely time sitting and overlooking the Rogue River in Oregon near Gold Beach.  It was definitely a much needed respite.  There's nothing quite like listening to the herons call to one another, the water of the river drift by and the wind rustling in the trees to help soothe one's soul.  Two afternoons, we sat in our chairs with books we barely touched and just enjoyed the peace washing over us. 

The second round of chemo was fairly easy.  A little more gastro-intestinal issues and the energy level is definitely lower.   My hair has thinned but only to my own eyes is it really noticeable.  We shall see what my hairdresser says tomorrow.  Overall, I continue to be grateful that it's manageable and I can go on with my daily life fairly easily.

Back to work starts this Friday August 10th with our leadership team meeting.  Monday begins the staff meetings and three days of prep work for the new school year.  Students arrive on Thursday August 16.  As for my schedule with the doctor's recommendation, I met with my principal before leaving for my trip to Oregon.  I will work four days/week for first semester taking every Thursday off with the exception of the first day of school (chemo is at 4 p.m. that day).  My chemo infusions will remain on two consecutive Thursday's and my metastatic/Stage 4 group meets on the 2nd & 4th Thursdays of the month .  The Friday's after my IV chemo, I will also be off work so two weeks/month I will only work three days.  I do need the recovery day after the infusions as the pre-med steroid and the two IV drugs need some major fluids to flush them out.  Also, I'm usually bright red from the steroids and look like I've been over indulging in alcohol.  A retired teacher librarian has agreed to sub for me on those Thursday/Fridays so students will still have some expertise to assist them when I'm gone.

Something that a lot of people ask is "how do you do it?"  and one response is I just put "one foot in front of the other" like the song from Santa Claus is Coming to Town.  One of the verses says..."If you want to change your direction, if your time of life is at hand, well don't be the rule be the exception, a good way to start is to stand".  Read all the lyrics here, they really have an amazing message.  And you can always sing along with the video:

Round 2 Begins and Summer is Over Half-way Gone

Round 2 began yesterday and I've got the Decadron Flush and headache going on today, but that's to be expected.   Met with the doctor yesterday and will do my August round before we scan again in September to see how this is working.  We also discussed my status for work, so I will be meeting with my principal next week about that plan.  Luckily, I have enough sick leave banked at this point so I don't have to worry about that yet.

Speaking of sick leave, I met with the STRS (retirment) rep this month and if I can hold out another year or two, I will have enough to retire on to pay my bills and eat.  If I retire today I can pay my bills but no money for food or fun leftover.  33 years in public education has been a good investment for retirement though and I do feel more optimistic.  Also met with my 403B manager and that should be able to help cover medical costs depending upon what happens in Washingon DC as that is a moving target these days especially with a "pre-existing" condition.

The two week break was helpful and by the second week I felt almost "normal".  If you saw my Facebook post, you know I got away for a few days to Sebastapol with friends.  It was lovely to get away.  Next weekend, Mom and I depart for our mother/daughter get away.  Returning to the coastal Rogue River for 4 days will certainly help recharge the batteries before work returns on August 10.  Can't believe how quickly the summer goes by.

Round 1 Complete

Round 1 was completed yesterday with my last 4 pills.  So far, everything is manageable.  As anyone taking medications knows (or listens to TV commercials), they all have side effects and the degree of severity is always the balance.  Mine so far have been mild and manageable.  A little queasiness that I can manage with food rather than more pills.  Tiredness that I manage with a nap.  Some other minor issues that I won't go into detail on, but nothing to keep me housebound or unable to venture forth.  Now I get a two week break before it all starts again. 

Meanwhile I'll keep chugging the water to flush the chemicals.  Celebrating Dad's 78th birthday on Sunday and a quick get away to Sebastopol the following weekend with some friends. 

One of my friends posted this on her own Facebook recently.  I've been reading it over as I face this newest twist in my cancer experience.  I don't feel "ripe" yet so I keep going forward one step at a time.  That is life for any one of us. 

In all honesty, when I think about dying I wonder if I will be afraid or if my faith will be as strong as I think it is. This quote by Jonathan Edwards really comforted my heart. When the time is right, I will be ready to go.

"When the fruit is ripe, it is easily gathered; it does not cleave fast to the tree, but is ready to quit it, and is picked without rending or making any wound. So is a saint that is ripe for heaven, he easily quits this world."

Thanks for following my ramblings.  

Round 1 Begins

Yesterday began Round 1 of this new treatment plan.  My morning started with 4 pretty blue pills that I will take every day for 14 days.  No immediate issues with these.  Possible side effects include bladder/kidney issues unless I keep water flowing in, mouth sores, lowered immune system and sun-sensitivity. 

The two white pills are the steroid I take 30 minutes before chemo starts to help manage any side effects.  I only take those on the day of the IV treatment.  Side effects of this I'm familiar with a lovely red glow today and an appetite that wants to be satisfied.  That will last until tomorrow.

The infusion center was full and running behind, so things started a little late.  The two medications I'm getting are push medications which means the nurse injects them into the IV line over a short period of time.  Once I got in and got started it was only about 45 minutes start to finish.  Possible side effects from these--nausea and other gastrointestinal issues, eventual hair loss/thinning, stay out of the sun without strong protection, fatigue and low blood counts.

This morning, I feel pretty good just a slight headache and the steroid "glow".  Of course, medication effects are cumulative so it's still early days.  I'm grateful that it wasn't a bad first day because that makes me more hopeful for the ongoing days. 

Meanwhile, my brother is in town until Sunday so planning to head to the parents' for dinner tonight and maybe a trip to the coast tomorrow. 

Thanks so much for the cards, messages, prayers and words of encouragement that I've received.  I know all of  those things help me keep my positive attitude going.

Decisions and more

Thank you so much to those who have sent loving messages and comments over my previous post.  It makes a huge difference.  The picture above was jointly painted in my support group a few weeks ago when the Healing Through Art instructor came to our group.  Each of us present added something to the painting, so it represents the caring of those who know what metastatic cancer looks and feels like.

I have made my decision and have chosen the CMF (cytoxan, methotrexate, and SFU) combination.  Two drugs are administered with an IV and one will be a given orally for 14 days.  The cycle will repeat every 28 days.   I will see the doctor on 6/20 and have my first treatment on 6/21.

A few of you asked about how you would know if I posted updates to this blog.  I've added the email update option to the right (on your phone use view web version), so I won't keep posting the link on Facebook when I make updates in the future.

Thanks again for the support.  Two more days of finals and one teacher workday and then summer and the alarm clock goes off!

Reviving a Blog for a New Purpose

When I originally created this blog it was part of an online tutorial for Web 2.0 tools and it was going to be a place for me to reflect on my practice as a high school librarian.  Well, I kept up for a while but then life...and I haven't posted in over three years. There was an unposted draft when I opened the blog but it was unfinished so I just deleted it.

So, why am I returning to this space now?  Well, life has taken another turn and I feel the need to communicate but knowing who to email, what to post on Facebook and what to tell people in person seems a daunting task.  I thought about starting a Caring Bridge Site but figured this was here already and why add my email and personal data one more place.

So, while I'm not renaming the blog.  I'm still "Ms. Mac, Library Lady" although no students have called me Ms. Mac for years...I'm re-purposing it for my journey with Metastatic Breast Cancer.  This past week I received pet-scan results and once again there is progression in my liver with a new tumor, new spots in the bones and in the pelvic lymph nodes.  That means it's time for another change in treatment.  Each time this happens it gets a little more difficult.

For those that don't know the back story--in 1999 I was diagnosed with estrogen positive breast cancer in my left breast and lymph nodes.  Surgery, radiation, and chemotherapy from June-December and I was considered cancer free.  5 years of Tamoxifen and the threat of recurrence was minimal.  Then in October of 2010 (after a summer of back pain), I was diagnosed with metastatic breast cancer in my bones along the spine and in the hips.  Radiation and back on Tamoxifen for 18 months.  My oncologist retired, I had an oopherectomy to stop the estrogen and a port installed to make the bone strenthening IV easier.  Tamoxifen stopped working and on to another pill for 18 months.  That stopped working and then on to another drug.  In 2015, abdominal pains sent me to the ER and a discovery that my liver now had tumors, so onto IV chemotherapy I went.  Almost a year of different chemos and then moved onto Ibrance (those commercials about metastiatic breast cancer on TV) combined with Faslodex injections which worked for 12 months.  Last fall, another progression so back to IV chemo--Gemzar that didn't agree with me for side-effects so in December switched to oral chemotherapy with Xeloda which brings me to today.

Because of the progression on Xeloda, I will move back to IV chemo on June 20th.  I have three  choices  and I haven't yet decided which one.  All of them require weekly visits for bloodwork and then back the next day for an infusion for two or three weeks in a row then a break before the cycle repeats every 21 or 28 days depending on my choice.  They aren't long infusions but it will still require giving up a good chunk of my day.  The infusion RN's are a wonderful group and know me well as I've been a regular visitor for the last several years.  Each choice has side effects that effect life's quality but until I do it I don't know what I can tolerate or not tolerate. 

So that's where I'm at.  Not where I want to be or where I want to spend my summer vacation, but it's my reality.  I know this is how this disease works, but each time there's progression it gets a little harder.  Luckily ,in January of 2017 I found a support group for people with metastatic or recurrent cancers of all types.  It has really helped to be with people that "get it."  I have wonderful colleagues, friends, church family  and my parents nearby to lean on when I need it.  I'm not so great about doing it, but I do know they're there.

People always ask what I need and I never know what to say.  I can handle my own meals.  I have treated myself to monthly housecleaning for years.  The infusion center is a busy place and I'm so comfortable there having someone with me just seems to get in the way of the nurses trying to do their job.  Because it's summer vacation and I'll be off work, I worry about being alone too much.  So, a phone call or visit or invitation to do something will be welcome.  I'll say NO if I don't feel up to it. 

And prayers are always welcome.  I know it's my faith that has given me strength to see this through. I don't verbalize it much but it is what I rely on in the darkest hours.  My friend, Carol  who passed in 2015, gave me a CD when she was undergoing her cancer treatments and I often turn to those songs to bring me comfort.

I'll post here again when I decide which treatment to do.  Meanwhile the last 5 days of school and a trip to Portland for my youngest niece's college graduation lay ahead.

LeighAnn