Walking Through Cancer/Part 7

                                  

                                                     Big Girl Pants

Early in my diary entries, after my first bone marrow biopsy, I thanked the doctors who approved administering conscious sedation to me during the procedure. I referred to the men and women who didn’t receive it,, most ungenerously, as “screaming meemies,” because presumably they couldn’t tolerate the procedure awake. Now that the clinical trial has reopened, things are moving quickly, and there wasn’t time to schedule conscious sedation this time. But Ativan was approved. So after my blood draw, I went into the procedure suite and waited for the oral sedation to take effect. It didn’t, not at all. Too nervous, I guess.

So, without blinking an eye, I turned over onto my side and let the nurse/practitioner begin her work. It helped me to have a nurse I knew come in and hold my hands, which were getting sweatier by the minute.

“I’m going to give you a few shots of lidocaine, Marilea, so you’ll feel a little pin prick.”

No big deal.

“Now I’m going to go deeper into the tissue with more lidocaine.”

Ouch, that really hurt, a deep ache.

She was coaching me like I was giving birth,

“Deep breaths, Marilea. A deep one into your nose and then exhale out of your mouth.”

“Okay, I’m going to get some liquid aspirate now. Deep breaths.”

“Another deep breath, Marilea. Okay, halfway there. One more puncture.”

I felt a very deep ache in my hip. Moaned a little, kept up the breathing. This part took a while. She was carving a small piece of bone out of my hip and placing it in a wider, hollow needle.

Then it was over. Maybe twenty minutes.

I finished dressing and Gene steadied me as we were leaving. NOW the Ativan kicked in! I slept when I got home, disturbing my sleep cycle. Definitely not worth the trouble. Even if it had put me to sleep in time, the pain would have woken me up. I’ll never elect oral sedation again, and I may forgo conscious sedation as well the next time. It’s a nuisance with scheduling and getting me ready (starvation beforehand, for one). Since I have blood cancer, I know I’ll be getting regular bone marrow biopsies, so I may as well make friends with them.

This journey has taught me many things. And one of them, as I get deeper into the weeds of treatment and all the discomforts, is that I’m tougher than I thought I was. Remember, up until now there has been no need for me to undergo these tests and procedures. But I’m at a new normal now, and more grit will be required of me. For those of you who have been following me on this journey, you know that I’ve been challenged emotionally most of my life. It usually took the form of substance use disorder, but thankfully I’m in recovery from years of that behavior. And right now, when I most need it, my recovery is serving me exceedingly well.

Walking Trough Cancer/Part 6

                                                   Now, it Begins…

It’s been a long, hot summer with family around most of the time. But no cancer treatment, a good thing so I could fully enjoy them.

Big girl pants, the time has come.  It’s September 11.

I’m scheduled to have my port implanted in two days, at 8:00 in the morning. So, another hotel stay to avoid having to wake at 5:00 am so that we’ll be on time. We’ve had to do this several times on this journey and we’ve turned them into  mini-vacays and dinners out together. There will surely be more. Lemons to lemonade, a lifelong skill!

I have been nervous about the port placement. But once again the nurses there added some conscious sedation to my IV so that it would be bearable. And it was, just pretty sore afterwards when the lidocaine wore off. I’ll get to see if my new mattrass will keep me on my back.

It feels weird having a foreign object in my shoulder, and I don’t particularly like it. But it’s really the most efficient way to receive my transfusions. A few people who have used their veins have seen them turn black from the poisonous liquid. Chemotherapy saves many, many lives, but it also has a well-known dark side.

After a long, dry period, things are moving quickly because the clinical trial is about to reopen. And they are nothing if not thorough at Fred Hutch. My port is in pace now. Next week I’ll have another PET scan. Then I’ll have my third bone marrow aspiration right after that. And the last procedure that I know of is a heart exam called a MUGA scan, which is a trip through a machine with some liquids in my vein to check the status of my heart. This last test is to see if my heart is strong enough to tolerate the chemotherapy.

After months of delay and frustration, it looks like I’m about to start climbing that mountain. I’m feeling energized and optimistic. To fight the feeling that my life is out of control, I try to stay as well-organized as possible. I bought a “chemo cap” from Amazon which, when kept very cold, you put on just before the infusions begin. The rationale is that the cold will insulate my hair cells from the harmful chemotherapy, preventing my hair from falling out or at least helping it grow back quickly. I’m not optimistic about its efficacy, but I’m willing to try anything to feel “normal” during the process. And I have a pile of scarves and bandanas o cover my head if necessary.

My friends have donated them all to me. Because of all the support I’ve been given from so many, this has not been a lonely journey. Even if I can’t fully prepare for what comes next, I know that I am in the loving arms of friends, family, and God, most of all. I know that, from beginning to end, I will never be alone.

“Let Go And Let God”

Let Go and Let God (p. 28, 95, 107, 125131,n163, 220, 294, 361) “Every day there are decisions to be made and problems to be solved. When we notice irritations growing into tensions, tensions into near-panic, and old fears returning, it is time to stop and turn to God. We find that when we supply the willingness, He supplies to power.”

Remember, “our best thinking got us into the rooms.” In other words, our minds can be dangerous places to go without some help. In Al-Anon we turn to a Higher Power. It can be God, a tree, or the group itself. As long as it’s not just us. Our egos and willfulness can blind us so much to taking a healthy course of action. And we’re just trying to help our children, so it’s easy to rationalize and justify our actions. That’s where educating myself about the disease gripping my daughter has been so critical for me. Over time I finally accepted that I didn’t have the power to save her from her disease. That was a hard pill to swallow, but a necessary one. I learned to let go and concentrate on what I could control. That’s when I started to feel free and serene and able to move forward with my life. I wish the same for all my brothers and sisters in these rooms. God Bless!

Looking For Solid Ground

Looking for Solid Ground

From Hope for Today, November 12:

“Serenity? What’s that? For years I was like a weather vane that spun around according to the air currents that other people generated…I attributed these mood swings to nervousness, lack of assurance, and whoever else occupied the room at the time. Serenity always seemed beyond my control…where does this serenity come from? It comes from trusting that everything in my life is exactly as it should be…it comes when I choose to care for myself rather than to fix someone else…

Thought for the day: I am powerless over many things, but my serenity is not one of them.”

Trust—a kind of steadiness— leads to surrender which leads to freedom.

Serenity.

From Shadow To Light

A movie came out a few years ago, “Drive,” and what I remember about it is the background song by Riz Ortolani. I love the words and the meaning behind them.

“Oh my love

Look and see

The Sun rising from the river

Nature’s miracle once more

Will light the world.

But this light

Is not for those men

Still lost in

An old black shadow.

Won’t you help me to believe

That they will see

A day

A brighter day

When all the shadows

Will fade away?

That day I’ll cry

That I believe

That I believe.

Oh my love

High above us

The Sun now

Embraces Nature

And from Nature we should learn

That all can start again

As the stars must fade away

To give a bright new day.

Darkness And Light

From “The Forum,” August, 2015, p. 19:

“I’m so grateful I found a way out of sadness, a way to take care of myself each day, and a relationship with the God of my understanding, who will never abandon me. The pain I’ve felt in the past is equal to the measure of joy I feel now.”

That’s quite a mouthful. Whoever wrote those words in “The Forum” is saying that somewhere between despair and happiness she or he did some work, found some answers. For me, anyway, I entered into a state of grace. I quite deliberately let go of my pain, which served no further purpose in my life. The lessons it taught me have been learned. I’ve put my sadness in a back drawer—and replaced it with positive thoughts that keep me motivated to reclaim my life, my remaining loved ones, and keep my heart ticking.

Grief is not a badge I wear anymore.

Joyfulness is.

The Power of Faith

From Hope For Today, June 13:

“…What I had overlooked in Step Two was the word ‘Power.’ The day I started placing my attention on that Power instead of on insanity, I began to see miracles in my life. One such miracle was my ability to talk about my fears in Al-Anon meetings. Other miracles included taking the Twelve Steps that lead me to serenity, and engaging in the process of forgiving and healing.”

It has taken many years of hearing Step Two read at meetings for me to really hear the word ‘Power.’ Now I realize how much more awesome my Higher Power is than this disease. Instead of dwelling in fear—and listening to my worst instincts—today I am striving to pass on the miracles of recovery to my children and grandchildren. If we keep doing this then, maybe not in

my lifetime but in theirs, we will see a change in how substance use disorder is treated around the world.

“Aye, There’s The Rub…”

The Serenity Prayer (Part 3)

 “Courage to change the things I can…

When my ego is involved and there’s a calculated risk, I’m going to be gutsy, not courageous. It takes guts to ski a steep trail; I alone will be rewarded. Courage is different. There is always a parenthesis of fear in Courage; the risk becomes minor. This parenthesis remains a void of fear until it is filled by God. There is no ego in a courageous act. Courage can ask for help. It is often something done for someone else, or it may be something I am not attracted to doing at all. I may lose by doing it. The courageous act is often the unpopular choice, to do or not to do. The results are seldom only mine. It requires more of me than I want to think I can do, alone. After it is finished, gratitude to someone or something is usually in order. Courage requires a moral strength not of myself. This strength is given by faith.”

EGO—Easing God Out—is my enemy in many ways. It makes me willful and arrogant. It’s the great separator—of me from people, of me from God. When I let God back in again, my life and my relationships seem to work better. And God has always given me the courage to do what is difficult in relation to my daughter. My faith in Him has given me the strength to do what I believe is right, regardless of the consequences. I believe things are unfolding as they are meant to. When I surrender to this belief, I am at peace.

Taking Ownership Of My Own Recovery

Many people are not strong enough to battle the terrible force of substance use disorder on their own. Application of the Twelve Steps had proven successful over and over again since they were put together by a couple of alcoholics and their friends back in the late 1930’s. Substance abusers need help; some say they need spiritual help. Our society is full of naysayers—skeptics who eschew these programs that are found in every major city across the country, and in big cities, in many of the churches, meeting three or four times a day. There’s a reason for the popularity of Twelve-Step programs: they work for many people. So I promised myself I would try harder now. My daughter was worth it. My daughter was worth it?

There is no one place on this journey to pinpoint where I discovered that I was worth it. I knew what a flawed human being I was. I was aware of my mistakes along the way—big ones and little ones.

But as I was starting to embrace the principles found in these Twelve Steps I was reacquainting myself over and over again with my own humanity and feeling my self-worth solidify with roots into the earth. None of this growth in me would have occurred if my daughter’s illness hadn’t pushed me onto this path. And I would always—still—reckon with the survivor guilt that has challenged my right to be happy while my daughter still struggles with this cruel disease.

There are many who view Twelve-Step groups as cultish and unattractive. There’s such a powerful stigma in our society against substance use disorder in all its forms that, I suppose, families of substance abusers suffer from guilt by association. Early on in my recovery my sister once said that it must be nice to have “those people” to talk to. But as she’s watched me grow and change these past few years I think she’s developed a healthy respect for the Program.

To this day, though, she has never discussed with me the dark side of our father, the alcoholic. Maybe she never saw his dark side, as I did. To her, he was the best father in the world, and I have no need to invade that sacred place where she holds him in her heart. In fact, I agree with her. He was a very loving man who passed on many gifts to his children and grandchildren. Yes, he was sick, and he died too young because of it. But just as I have forgiven my mother for any ways she may have hurt me so have I lovingly accepted my father’s illness. And in learning to forgive my parents and others who have wounded me in my life, it has become easier for me to forgive myself for my own shortcomings and the part they played in hurting my own children.

I, being a substance abuser, a daughter of one and a parent of one, have found myself quite at home among these seekers of peace and serenity. I’ve been in the right place for twenty-three years now, and I cannot begin to tell you the gratitude I feel for the wisdom in this simple program that has helped me to look forward to the sun coming up every day—and to embrace my life in its entirety.

“God, Grant Me The Serenity To Know The Difference…”

From Each Day A New Beginning, March 23:

“’On occasion I realize it’s easier to say the Serenity Prayer and take that leap of faith than it is to continue doing what I’m doing.’

Most of our struggles, today as in the past, are attached to persons and situations we are trying forcibly to control. How righteous our attitudes generally are! And so imposing is our behavior that we are met with resistance, painful resistance. Our recourse is now and always to ‘accept those things we cannot change, and willingly change that which we can.’ Our personal struggles will end when we are fully committed to the Serenity Prayer.

‘The wisdom to know the difference is mine today.’”

Oh yes, the wisdom to know the difference…how often our egos get in the way of living well. We want what we want when we want it! We want our substance abuser to give up drugs and come back to the living. If only that choice were in our hands…

But it’s not. Only substance abusers have the power to reach for their own recovery…and we have the power to reach for our own. That has been my choice for several years now, and I’m learning to be happy despite losing my daughter to the living death of heroin addiction.

A good friend told me that ego is what separates us from God and each other. Ego (Easing God Out) is often our enemy and keeps us from the serenity we so desperately long for. So I’ve learned to turn my pain over to God (Step Three), to “let go and let God,” and that has made all the difference in my life.