NE(A)D

This is from Margaret:

Dearest Family and Friends,

A year ago tomorrow (October 24), I was officially diagnosed with the most aggressive form of Stage IV metastatic breast cancer. At the time of my diagnosis, it had spread throughout my lymph system and onto some bones, in particular, my spine and sacrum. Only 6% of women are initially diagnosed at Stage IV.

There is no cure for Stage IV metastatic breast cancer.

At Stage IV the cancer is managed or treated as a chronic disease. The goal for the past year has been to achieve “no evidence of active disease.” It is with an incredibly grateful heart that last week – after a year of brutal treatment – my oncologist declared that we have achieved our primary goal!

Like Dorothy at the end of The Wizard of Oz, I am now awake and at home and everything is in color. Your prayers, friendship, notes of encouragement, care, concern, overwhelming love and support have sustained us. My “Yellow Brick Road” has been – and will continue to be – full of challenges and celebrations.

Friends, I am ALIVE, and we are celebrating!

Every journey also offers us opportunity to learn (about ourselves and others and people and places), to gain new perspective, and to experience home in a new way – perhaps with a new vision. I have more questions than answers. This is where I am now.

We know that, unlike most breast cancer survivors, my active, daily treatment will continue for the rest of my life. The chemo port in my arm which transports chemicals to my heart will never come out. I take daily medications, I receive an chemical infusion once a month, and I receive a nasty shot every three months to keep the disease under control for as long as possible. My doctor talks about what we will do next when (not “if”) this treatment starts to fail. I will anxiously get a PET scan every three months to determine if the cancer is advancing. I finally decided that I am unable to work full time and quit my job.

However, I am hopeful that I have many years left on this planet, but we know that is in God’s hands. Fortunately, my oncologist shares my optimism for being able to treat this nasty disease for years (hopefully many!).

People are not statistics. Everyone’s cancer experience, their diagnosis and prognosis, is unique. With that said, we always seem to want to know, “What about me?” I was told I have a little better than a five year survival rate. However, my oncologist shared that one of his patients with a similar diagnosis lived for 22 years — and died from a heart attack. Those stories are powerful medicine! Only God knows!

A good friend asked me recently how I was, and it shocked me to find myself in tears as I said, “I am doing well – really I am.” Like Dorothy I have survived a wicked tornado, and I have a stronger appreciation, understanding, and love for those dearest to me.

My life looks different yet my faith, my beloved husband, my family, and my friends near and far are more real and precious to me now than ever before.

My jelly bean and bucket list are in full focus.

Our hearts are full of abundant gratitude for successfully reaching this milestone and it is with fierce determination and renewed hope for joy filled and meaningful living in the years ahead which inspires us to dream new dreams for our future.

Thank YOU!

Love, Margaret

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PET Scan #3 Results

This will be short and quick, because I am headed out to Canada in the morning to fish for fish (not people which is my normal job), but we are aware many of you have been praying and wondering for the results of Margaret’s PET scan last week. She met with her oncologist today, and he went over the highlights of the results among other things.

The good news – the very good news! – is that nothing “lit up” in the PET scan, suggesting that the chemotherapy and radiation have been effective and the metastatic cancer is not active. Thus, she was graded out as “no evidence of active metastatic cancer.” She is scheduled for a bone scan tomorrow to look for cancer that would not show up on a PET scan … so the champagne is still on ice.

There were some new concerns, which is what we have come to expect with cancer. There is some suspicious activity in her liver and spleen, but her oncologist said “not to worry” about that. Right! We spent some time this evening googling medical terms and gleaning more information. It’s hard not to be a little bit anxious frankly.

I will stop short of interpreting all this for you and how it is impacting us emotionally and spiritually, but suffice it to say that we are generally pleased with what we learned today, but are definitely still “cautiously optimistic.” Bottom-line? Nothing we learned today should change her treatment or prognosis, and we believe that is basically a good thing. Maybe. Probably.

So she lives to fight another day!

Radiation? Check!

A quick post to say that Margaret has now completed the proscribed path of treatment for stage four breast cancer.

Hip Hip Hurrah!

This morning, she walked out of Dr. Jewell’s torture chamber office about 11:30 wearing a new sporty dress and a big smile. She left the office with “release” papers to hugs and handshakes from nurses, office staff and medical techs.

Dr. Jewell called her the model patient.

Of course, she’ll be back in his office in a month to decide what she will need to do next, but tonight we are celebrating this milestone. The champagne is on ice. Do we have to wait until 5:00 pm? (Yes, because I have a wedding rehearsal!)

To review, she started having “problems” last spring which led to an eventual diagnosis of breast cancer which had metastasized on her bones – primarily her spine and sacrum. She had a double mastectomy in November, followed by chemotherapy. Then a PET scan revealed that she additionally had thyroid cancer, which resulted in partial (half) thyroid-ectomy. And now she has completed 7 weeks (35 days) of daily radiation on her neck, chest and spine.

She is seriously burned, worn out and lost a lot of weight, but greatly relieved to be at this point.

Radiation was much harder on her than we expected, particularly the radiation on the spine, which wreaked havoc on her digestive and nervous systems. Of course, the beauty of modern medicine is pain management. Better living through chemicals? She just popped a few more pain pills and plowed through.

Did I say that her doctor said she was the model patient? Her strength should return slowly.

What’s next? She has a regime of daily pills, she gets a monthly infusion to strengthen her bones and she gets a really nasty shot with a really, really long needle once every three months. She may have one more area on her spine radiated after Megan’s wedding, but we will make that decision later. She will continue this path until … it doesn’t work anymore. Then, her optimistic oncologist says we have 12 more options that are proven effective! No worries! Riiiiiight.

Of course, anxiety will remain until the next PET scan which should take place in late August.

So … a round of applause for Margaret for staying strong and pushing through. Clap, clap, clap.

Did I say she’s the model patient?

Megan’s wedding is in two weeks! Let the wedding party begin!

The (Initial) Results Are In!

This is from Margaret:
Dear Family and Friends,
Yellow brick road update but first I must say thank you SO much for your faithful prayers, support, encouragement, and love. We have come a long way and uphill with twists and turns and I simply could not be where I am today physically, spiritually, or emotionally without you.
The great news this week is that the surgery and chemo have been effective and my PET scan is littered with beautiful language including words such as “resolution, no evidence, less intense, improvement, and favorable!” I am grateful even though I had seriously hoped for the words to read “NED” (no evidence of disease).
However, my unexpected journey never seems to fall short of crazy hairpin turns or steep inclines. The newest being that next week will be yet a few more tests and an additional biopsy to rule out thyroid cancer. I am confident that with your continued prayers and support we will get through this with flying colors. To be completely honest, I am growing a tad bit weary of this routine and imagine it may be a lot like running a marathon (or ultra marathon) and getting to that point in the race which is well past halfway yet it is clearly not time to sprint yet. But I know we’ve got this.
Many of you may be aware that my first PET scan in early December last year was one of the most terrifying experiences of my life – mostly because I did not know what to expect and the process of isolation for the injection followed by an hour of waiting in a darkened room seemed to be the key to unlocking the big door which heretofore had held my fears mostly in check. I am so happy to share with you how this scan was different. Even though I was not allowed to have anyone with me in that dark room I managed to have ALL of you! Once the nurse left and I knew I could not manage a traditional type prayer or scripture recitation on my own behalf without completely losing it so I started down my list of things to be thankful for and as your names and faces would appear in my head and my heart it was like the proverbial floodgates were opened and silly old fear did not stand a chance. I thought of all of the prayers, meals, cards, visits, flowers, emails, hugs, offers of support, love, connections with friends old and new and there you all were in that tiny dark room as real to me as the heated blankets I was wrapped in to keep me warm. You kept coming so fast and furious I tried to go alphabetically and then geographically and like one of my favorite hymns describing God’s mercy “from east and west and north and south” you all came. It felt like a miracle to me. Thank you.
Every time I have gone in for “big” tests since this journey began I have been asked about a living will or power of attorney or some other terribly depressing thing I have had to say “no, but I know I should.” However, I do have my jellybean list in place!!! If you think I am referring to my beloved jelly belly jelly beans you are only partly correct and for clarification I offer you this: https://m.youtube.com/watch?v=BOksW_NabEk
The following devotion was sent to me and touched and inspired me profoundly and I would like to share it with you:

The story goes like this:

A young woman went to her mother and told her about her life and how things were so hard for her.  She did not know how she was going to make it and wanted to give up.  She was tired of fighting and struggling.  It seemed as one problem was solved a new one arose.

Her mother took her to the kitchen.  She filled three pots with water.  In the first, she placed carrots, in the second she placed eggs, and the last she placed ground coffee beans.

She let them sit and boil without saying a word.  In about twenty minute she turned off the burners.  She fished the carrots out and placed them in a bowl.  She pulled the eggs out and placed them in a bowl.  Then she ladled the coffee into a bowl.  Turning to her daughter, she asked, “Tell me what you see?”

“Carrots, eggs, and coffee,” she replied.

She brought her closer and asked her to feel the carrots.  She did and noted that they were soft.  She then asked her to take an egg and break it.  After pulling off the shell, she observed the hard-boiled egg.  Finally, she asked her to sip the coffee.  The daughter smiled, as she tasted its rich aroma.

The daughter then asked, “What’s the point, mother?”

Her mother explained that each of these objects had faced the same adversity… boiling water – but each reacted differently.  The carrot went in strong, hard, and unrelenting.  However, after being subjected to the boiling water, it softened and became weak.  The egg had been fragile.  Its thin outer shell had protected its liquid interior.  But, after being through the boiling water, its inside became hardened.  The ground coffee beans were unique, however.  After they were in the boiling water they had changed the water.

“Which are you?” she asked the daughter.  “When adversity knocks on your door, how do you respond?  Are you a carrot, an egg, or a coffee bean?”

With a profoundly grateful and hopeful heart,

Margaret

Six Rounds of Chemotherapy? Check. Done.

Today on Maundy Thursday, when Christians remember The Last Supper, Margaret successfully completed the last of her planned six rounds of chemotherapy. Praise the Lord and yippie!

She is just shy of giddy and said it feels “surreal.”

If the pattern holds, she will feel good (“good” being a relative term!) for a few days and then crash. She’s lost hair, weight and red blood cells (anemic) and has experienced nausea at times, but avoided many of the classic side effects which make chemotherapy difficult. She is easily fatigued, but her spirits have generally remained high; her outlook, positive; and her will to fight this nasty disease has been strong. Her eyes water and her nose runs constantly, but – dammit! – she still has her fingernails.

She has been doing all the right things recently: eating more and better, walking daily, going to oncology therapy on a regular basis, taking acupuncture, and, as of last week, mixed in Reiki.

Next week, she will have a bone scan on Tuesday and PET scan on Wednesday. The doc gives her a 95% chance for positive results on both of these tests. This, of course, is encouraging, but we aren’t popping champagne yet. At Stage 4, the goal is not to kill all of the disease and eradicate it completely, but to knock it back into remission – and keep it there, so that she may live with “no evidence of disease.”

Assuming a good report next week, she’ll move on to several weeks of daily radiation. She also will soon begin hormone therapy, which she will do for the rest of her life. They will continue to treat her for side effects, such as weakened bones. Since she has an aggressive form of breast cancer (Grade 3), we were told that she will have a PET scan every three months for at least three years. So be it.

Even though she is planning and we are all praying for a good results next week, we did ask what happens if the reports are not so positive. We were comforted to hear the oncologist say that we would cross that bridge when, and if, we come to it, but “Don’t worry. There are 12 different things to try.” So … we won’t worry! Gulp. (I think Jesus said something similar about worry in the Sermon on the Mount.)

Again, thank YOU all for your prayers and support on Margaret and me – and the girls. I want to thank specifically my church, Wellshire Presbyterian Church, for tolerating my fragile mental and spiritual state during this sacred Lenten Season. You have all been great! We love you!

It’s getting late … As Hozier sings, it’s time to “Take me to Church …”

Oh, and my mother is in town, so I must say on her behalf, “Go Duke!”

An Overdue Update on Margaret!

I have been told that I am overdue for a blog post on Margaret’s condition. Sorry!

She has successfully completed 4 of 6 rounds of chemotherapy. It’s a bit difficult to explain how she has tolerated the treatment to this point. On the one hand, it’s hard to imagine anyone doing any better with it. Her blood work has been “acceptable” so far and her treatment has gone on “as planned.” There have been few surprises to what she had been led to expect.He attitude is positive and her spirits are generally high. Her sense of humor is intact.

On the other hand, it has been rather brutal and is clearly taking a toll on her. She experiences sundry aches, pain, fever and nausea; she has lost weight and all of her hair; and she is easily fatigued. She has become a proficient pain manager, combining drugs, oncology rehab and acupuncture with an occasional “restorative” yoga class.

She began an extended medical leave of absence from work last week to focus on her health. Assuming all goes accordingly, she will have her next PET scan on April 8, which will be followed by several weeks of radiation. Of course, she is battling stage four, metastatic (lymph system and bones) breast cancer, so the goal here is to knock the cancer back into remission or “no evidence (or activity) of disease.” Pray for a good, clear PET scan, please!

In related news, we bought a new house and moved last week! Our downtown (LoDo) living experiment simply was not working given our current plight. One of our joint New Year’s Resolutions was to start looking for a new house in January. On a whim, we went to our first open house in Stapleton in mid-January. We were not in the house 10 minutes before Margaret said, “It’s perfect. I want it.” … so we bought it and moved in last Thursday — amongst the heavy snow fall!

We had packing and unpacking help from a few good friends, and Margaret’s mother flew in for the week. Margaret held up well, but a real shout out to the mighty Katie Bell, who maintained a sense of humor during the whole sordid mess and was absolutely indefatigable carrying heavy boxes up and down stairs.

Our new, new address – our hopefully PERMANENT ADDRESS – is 8994 Martin Luther King Boulevard, Denver, Colorado, 80238. (Believe it or not, the United States Postal Service does not have “Jr.” on their records – although the City of Denver writes “Jr.” on their street signs.) It is a brand new town or terrace home in the Stapleton area of Denver, which is being built on the old airport property. It has three floors above ground plus a finished basement. Importantly, there is no yard to maintain or snow to shovel! It is adjacent to and overlooks Central Park and has a fantastic view of the Rockies. It is a welcome departure from our previous purchases, and we are both very, very happy with our new home!

If you want to contact Margaret directly, please know she will not be checking her Metro-Denver Habitat for Humanity e-mail for the foreseeable future. Contact her at MEB5280@gmail.com.

That’s all for now!

“Live long and prosper.” – Leonard Nimoy