Update 2024-0922

A Letter to My Former Self

Written September 22, 2024—First Anniversary of Stem Cell Transplant

Directed to October 3, 2022—Day of Diagnosis

Dear Former Me,

I saw you take that usual mighty stance of bravery and determination, even though you have no clue what is ahead.

I saw your beloved primary care doctor begin delicately, his voice tender yet sure, as he said, “You have myelomas forming on your skull and your spine.”

I saw you pick up his words as he spoke, tinged with your decade-old memory of the prognosis of myeloma, and think, “I’m going to die soon, and it’s going to be ugly.”

I saw you take Jackie’s hands in yours, undaunted, and say, “Honey, I have cancer.”

I saw as you looked into her eyes, and you thought, “I am going to die soon, and I’m going to make this as easy as possible for Jackie.”

Spoiler Alert

Courageous and loving as that desire sounds, don’t shortchange yourself. You are about to find out the strength of Jackie’s mettle. Be assured she will be your rock, your protector, and your comfort through grueling times ahead. She will say, “Let me have the honor of taking care of you.” Let her.

This letter is a much-deserved “spoiler” for the difficult times ahead. It aims to give you wisdom, hope, and peace.

This letter is to remind you that you have the strength to do this with panache, even though it seems like the world imploded today.

This letter is to be a comforting arm around your shoulders, a nurturing message to nudge you from an understandable state of shock toward resilience and recovery.

Let’s start with the good news. You are not going to die soon. Hold that thought. Most of what you think you know right now is wrong.

Scrambling

Your swift transfer to care providers in your new state on the heels of the pandemic shutdown will muddle things for a while. You’ll lose your medical anchor from your former home, and no one will know what you know and what you don’t know for a while.

You will proceed for a few weeks, thinking you are rocketing toward one of the worst kinds of death. Hold on tight. You don’t have all the information yet.

By the way, it’s not a bad idea to do a deep clean on your closet, as you will, as part of your “make it easy on Jackie” schtick.

Listen

From the most unexpected place, a friend will be the first to say, “Mary, you are not dying.” Believe him. And believe him when he also says, “You’re just going to have a supremely gnarly year and a half ahead.”

Then, listen with all your heart when, a few days later, while making the bed together, Jackie takes you by the shoulders and says, “Please stop dying.” How can you refuse that? Don’t.

Listen again when another friend says, “You must find a ‘passion project.’ It must be something that will drive you to push into each new day.” Do it.

Learn

Use your exceptional resourcefulness and take charge. Learn everything you can absorb about myeloma and its treatments, and when you think you are saturated, back away for a short while, rest, and come back at it with even more gusto.  

Connect with a support group for mutual information sharing.

Find recent, reputable, reliable research. Some foundations focus on this. Be discerning about who you pay attention to. Read all they have to offer. Learn. While you are at it, find books that are first-hand accounts from other myeloma patients—these will guide you like breadcrumbs.

Fun fact: One such author/survivor will come into your life and provide tremendous support throughout this ordeal.

Prepare

It is best to create and keep your own updated medical records system—a comprehensive list of your health history, including every lab report, scan, prescription, allergy, and visit note. This will help keep your awareness keen and be invaluable when clinic and provider systems don’t communicate.

Speaking of communicating, you will only have a few minutes at each appointment. Prepare your questions ahead of time. Write them down. Keep the list and your conversation to only the most essential topics. Always bring a list of your current medications and allergies. Keep it on your smartphone, too. Have someone with you to be a second or third set of ears. Ask for permission and record the significant, important visits. (Reputable doctors don’t mind this at all.)

Rest assured. Jackie is going to take care of so much of this for you. Let her.

The Medical System

It would be best if you let go of the model of concierge medicine you’ve been used to. You will trade for one of the world's biggest and best oncology centers. They work with hundreds, thousands of patients, and you will be one among many. This is a good thing. Those physicians work with myeloma over and over, all day, every day. They are experts.

Most of your care providers will be a lovely mix of brilliance, dedication, and compassion. You will learn the truth in the endless praise that often gets heaped on those who devote their lives to cancer care.

Sadly, the medical system is also severely stressed on every level. Add that to the fact that some people don’t move about in the world as their best selves, and you will find yourself in difficult situations. You will even experience some mistreatment.

Faded emotional scars will become inflamed, stirring responses you thought you’d resolved long ago. It will be challenging. Use each of these circumstances as a dreaded AFOG—another effing opportunity for growth. You must stay clear about what is happening now versus what happened in the past. Lean into your therapy work. It will help you tremendously. Meditate. And breathe deeply.

Relationships In Focus

Relationships will play a more surprising role than you might guess.

Your tribe of friends will surround you with every conceivable kindness and help. An assortment of new friends will come into your life. You will be showered with prayers, sparkles, chi, and good wishes from around the globe. People you never anticipated will step up in big ways.

Unexpected and magnificent things will happen within the family. Relationships will be healed, you will know the authenticity of the love you find there, and all will show up in ways you can’t even conceive right now. As a bonus, weddings and a grandchild will happen. These will be sources of great joy and touchpoints to help you stay grounded in the fullness of life.

Know also that the experience of cancer almost always has this unfortunate part: some friends and family will not be able to stay the course with you. That’s okay. Remember that you’ve been there yourself, and give grace. It's essential to let go when necessary and focus on those currently there to support you.

The Treatment Road

Treatment is a cumulative thing. It gets progressively rougher as you move through the induction phase, into the stem cell transplant, and beyond. There will come a time when you will be too sick to carry on by yourself. Ultimately, even the inner workings of your body will become ill-equipped to fend for itself. Do not be afraid of this. Surrender. Your loved ones and your care team will take care of you.

In a peculiar way, this part will be easy. Knowing that no amount of fussing has ever served any useful purpose, you are skilled in how to endure and prevail. This will be a new opportunity. You will be unavoidably and absolutely dependent. Rely on the care of others. This time, they won’t let you down. This will be an excellent time to connect energetically with healers who are there for you. Create a fusion of scientific and spiritual medicine. You will be safe.  

Doubt will rear its head. Evaluate it. Adjust if needed. Otherwise, squash it like a bug!

Recovery

You are going to make it. You will squelch myeloma to an undetectable level, but the cost of doing so will take a tremendous toll on your body. Be patient. Healing will take longer than you want to think.

Self-care will not be about spa visits and soothing music. Expand your care circle. Double down on nutrition. Resume your training toward a stronger body, no matter how tiny the steps must be. Sleep more; take naps. Hydrate.

Wash your hands often. Avoid indoor crowded spaces. Use good quality masks. Stay socially distant. You know the drill. It’s the stuff we all mastered during the early days of the pandemic.

Myeloma is not a slam-dunk, game-over kind of deal. It is not curable, but it is manageable. Infection and renal failure generally cause death in myeloma patients. Heal and guard your wounded immune system and endangered kidneys. This will be your life's new reality. It is totally in your wheelhouse. Keep up the regular effort of researching, learning, questioning, acting, and advocating.

In closing

Tell your story. Give freely what you learn. Your experiences will offer invaluable support to others struggling with chronic and critical illness, creating a beautiful circle of support.

Know that your story isn’t over yet. You have significant and gratifying work ahead. Every step you take is an opportunity to discover greater joy. Embrace what is ahead—you are capable and ready. You’ve got this, and deep down, you know it. Now, truly believe it.

May you stay safe.
May you be well.
May you love.
May you feel love.
May you have a life of ease.

💕

Warm Regards,
Mary Rose