Awareness

War And Peace

Marilea C. RabasaLeave a comment

“They sicken of the calm, who knew the storm.” ~Dorothy Parker

Do I see myself here? Somewhat, if I’m honest, as cynical as that quote is. Maybe in the beginning I was addicted to the drama of my daughter’s substance abuse disorder. That—and all the martyrdom I subjected myself to. But this did not bring me happiness. There are a number of ways, I have learned, to stay involved with an addicted child—ways that might have helped us both navigate this illness better. But for a long time I was stuck and didn’t know how to free myself of the downward spiral.

Over time, my obsession broke me down and wore me out. I do enjoy the peace in my life now, though I still experience some PTSD. So many years, it seems, of struggling to help her, and then for both our sakes, letting go of the struggle to save her. Addressing once and for all my own substance use—so that my presence could benefit my other loved ones. Don’t think for a moment that I don’t feel the pain of losing my girl. I do. The trauma of losing a child, to whatever illness, never goes away. But, in my experience, it isn’t so heavy to carry. It feels lighter now. Hang in there, Moms. Many things are resolved with better education and the passage of time. Keep loving yourselves and the world around you. Love is the great healer of all things!

“Loving, like prayer, is a power as well as a process. It’s curative. It is creative.” ~Zona Gale

Walking Through Cancer/Part 11

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                                    My Blood Tells the Whole Story

I’m so glad that I had a chemo port surgically implanted in my right shoulder. It’s much simpler for everything: blood draws, transfusions, and chemo infusions. Most of the time I forget it’s even there: painless, just a little bump under my skin. Very convenient.

This week, my blood work showed great improvement in my numbers: white blood count is normal for the first time in a year; but still low red count and anemia. Yet I feel so much better after only one chemo infusion last week. No more fatigue in my legs and just a generally improved sense of wellness. Except for the pain in my left arm…

I asked my doctor on Monday to level with me: did they start with a low dose of chemo and will gradually increase it with five more infusions? She said no, they plan on giving me the same dosage every time. So I guess we’ll see. It’s out of my hands anyway. Just lean into it and be grateful that there are no side effects so far. Same story with the clinical trial, a randomized blind study. Maybe I’m getting a placebo. Time will tell.

Fred Hutch Cancer Alliance has offered me up to $2100 for participating in this clinical trial. I’m pleased about that. And if the trips down to the Hutch are more than twice a week, they offer cheap housing on their campus to the cancer patients. I’m getting a lot of support. Not to mention all the rides my friends are offering to get me to the Hutch for treatments. I am surrounded by love and support. No more room in the refrigerator for all the food people are bringing. It’s hard to cook with my arm in a sling!

I feel blessed as I walk through this journey. I’ve attempted to be proactive with all the needs that go along with chemotherapy: anti-nausea pills, which I haven’t needed at all. And since my doctor assured me that I would lose my hair, I have a box full of scarves and bandanas which I can’t put on with one hand! I think God is playing a joke on me by making this so difficult. But so far, no need for head covering: I still have my hair. Still, it’s early in treatment…

During my first infusion, I realized I forgot to put on my chemo cap (a desperate attempt to keep my hair). By then, though, it wasn’t even cold, so I said to myself, the hell with it. I don’t even care anymore. Women are vain creatures, yes we are, and I certainly am. But every day that passes, my vanity seems to be flying out the window. It’s all so superficial anyway. My spiritual health is what matters.

So this is where I am now, growing inwardly, and happy to see on MSNBC that bald ladies seem to be in fashion. A new trend!

Walking Through Cancer/Part 10

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One Tough Old Bird

Nearly three years ago, I tripped on a towel in our bathroom and fell, whacking my head against the porcelain tub. I broke six ribs, had a pneumothorax, and a teardrop fracture in my neck.

It was my fault, moving too fast in an unlit room, I made a promise to myself: I can never fall again. Period. Well, “Promises are like piecrusts…” Is that how it goes?

Five days before my first chemo infusion, I made the same mistake. I had a fall that resulted in a significant fracture of my humorous (upper arm). OMG, I can’t believe my timing! I’ve started out in a sling and the orthopedist saw me yesterday. Because of the cancer treatments, we’ve elected to avoid surgery for now and let it heal in the sling for six to eight weeks.

“Marilea, the human body is a remarkable machine. It will heal itself if we are patient and let it. If you use the sling for the next two months, slow down, and use the time to rest, it will eventually heal itself. You will need to do regular exercises and maybe work with a therapist regularly, but I think we can avoid surgery, which is problematic at your age, not to mention your cancer treatments.”

“Thanks, Doc. I’ll learn to be patient and let my arm heal on its own. See you next week for a checkup.”

Ladies, have you ever tried to get dressed, pull your pants down to go to the bathroom, floss your teeth, cut vegetables or an apple, just live your life the way two-handed people do? It’s damned inconvenient. And slows me down, probably a good thing.

So here’s another lemon in my life: the broken arm.

Lemonade? It could  have been SO much worse. I could have had a concussion, broken a hip, compromised my legs and ability to walk. Walking, oh wow, that’s number one on the gratitude list. If that were compromised I might have just had to put everything on the cancer side of the drama on hold until I could walk again! So lots of silver linings to pay attention to and deeply felt joy and gratitude that it’s just a broken arm. Oh, another glass of lemonade? My ability to see all the silver linings and allow them to elevate my spirit.

The spiritual part of this journey is absolutely essential to holistically healing my body. My alcoholism recovery is the basis, of course, for all this healing and has saved my life. Minimal whining, endless joy and gratitude, A deeply held faith that life is unfolding for me as it was meant to. I’m in God’s hands. And however much time I have left on this earth, I will live it to the best of my ability, and accept, gracefully accept, God’s will for me.

Amen, and stay tuned for the continued cancer part of my saga!

HALT

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HALT Am I hungry, angry, lonely, or tired? A good time to pick up a healthy snack, count to ten, pick up the phone and/or take a nap.

Often when I’m angry or tired, for whatever reason, it’s best for me to lay low and not spread any negativity to those around me. These feelings are important for me to recognize, and I don’t want to deny them. But I need to guard with special care how I’m interacting with those close to me to avoid any collateral damage. Does that make any sense?

Walking Through Cancer/Part 8

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                                           Preparing for the Big Day

I have spent a year with night sweats, my first symptom, not counting the white blood count that called for a hematology referral. The mouth sores began with a vengeance in April and have stopped. Just to try and keep them at bay, I gargle with salt and baking soda every night after I brush. Good dental hygiene is important with cancer patients. Don’t I have enough to deal with without also losing the few teeth I have left? J

And the mouth infections! In all my 76 years and with all my addictions, I’ve rarely had anything to prevent me from eating. I lost five pounds the first week and I can’t afford to. So I’m trying to avoid them.

They called from Fred Hutch yesterday and have to push my clinical trial back one week, to October  14.

“Do I need a driver every time, Kiana?”

“Yup”

“Well, getting a driver is not always easy. Gene will be in San Francisco on this new date. If I didn’t have a son in Seattle, it might be more difficult to find someone at the last minute. This is why I need you to give me a schedule for my treatments so I can give my friends options. They have lives, too.”

“I know, Marilea, and I’m sorry. But Dr. Poh needs to see how the trial pill works before she figures out how to schedule the infusions moving forward. And we’ll try to work around your week at Disneyland over Thanksgiving.”

“Thanks, Kiana. I know you’re doing your best. And I appreciate your efforts to accommodate me.”

After months of blood tests and bone marrow biopsies, I feel like a pin cushion. And now I’ll be a “holy” lab rat! “Clinical trial” is just an idea to me now; I have no idea what to expect. But I do know that the results will help future patients with my rare form of cancer. And helping others makes it all worthwhile.

I’ve lived with this uncertainty for about a year. How have I handled all the stress? First of all, I’ve been strengthened by my recovery, full of gratitude for the wonderful life I’ve been given, and this attitude keeps me grounded.

Life sometimes throws us curves, and how we respond to them begins in our head. It doesn’t matter what it is. I won’t even go into what a bad two years this has been for me, not counting the cancer. Just awful. And if I didn’t have the tools of recovery to work with, I’d likely be sitting on the pity pot whining about what a trial my life is. But to what end? How does that attitude solve anything?

I will use all these tests to make me stronger. Every day I pray to accept God’s will for me. My faith elevates me from all the stress and discomforts. I believe I’m going to be fine.

Stay tuned!

Change Is Good

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From the blue Nar-Anon pamphlet:

Changing Ourselves

“Addiction is like a chain reaction. It is a disease which affects the addict as well as the family members, friends and co-workers. We try to control, cover up, and take on the responsibilities of the addict. The sickness spreads to those of us who care the most. Eventually, we begin to feel used and unhappy. We worry, lose trust and become angry. The addict blames us and we feel guilty. If only something or someone would change!

When we discover Nar-Anon, we find others with the same feelings and problems. We learn we cannot control the addict or change him. We have become so addicted to the addict that it is difficult to shift the focus back to ourselves. We find that we must let go and turn to faith in a Higher Power. By working the steps, following the traditions and using the tools of the program, we begin, with the love and help of our Higher Power and others, to change ourselves.

As we reach out for help, we become ready to reach out a helping hand and heart to those in need of Nar-Anon. We understand. We do recover. Slowly, new persons emerge. Change is taking place.”

Though I have changed and grown through my work in the program, I. of course, still love my daughter and am available to help her if she reaches out to me for help. The difference is that I’m a healthier person now and am able to make the tough choices I couldn’t make years ago. I pray she finds the strength to come back to her family. We can’t get back the lost years, but I still have hope, like the warm sun shining on my face, and keeping my love strong.

Walking Through Cancer/Part 7

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                                                     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.

Success

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“To laugh often and much,

To win the respect

of intelligent people

and the affection of children,

To earn the appreciation of honest critics and endure

the betrayal of false friends

To appreciate beauty, to find the best in others!

To leave the world a bit better, whether by a healthy child, a garden patch

or a redeemed social condition.

To know even one life has breathed easier

because you have lived—

This is to have succeeded.”

This is all about making a small difference in the world. I hope I have.

Walking Trough Cancer/Part 6

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                                                   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.

“The Road Less Traveled”

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I think we, who are willing to be in this room and undergo personal change, are brave souls.

When I joined Al-Anon, I was in my Fifties, and anxious to save another person I loved.  But oh what a joy it’s been to let go of that obsession, which was becoming so shrill and counterproductive.

I was relieved to turn the focus back on myself and learn that my faulty attitudes were the source of my pain, not the people around me.

Regarding the amends steps, it’s possible to overuse them, just as we might exaggerate our negative defects in the 4th step. I’ve done both! That’s why it’s so important to understand the purpose of amends: reaching personal freedom.

These are intended to be hopeful steps, not self-flagellation. Making this list and then acting on it is just another way to weed our garden. My husband’s always reminding me to weed close to what we’re growing, so that nothing interferes with the growth of the plant.

Making amends is not always pretty, and rather than freedom I sometimes look for forgiveness and closure. With my daughter, Annie, she threw them right back in my face. So I knew I was on the wrong track to expect absolution from her, and my sponsor helped me appreciate my efforts and then let them go.

My real reward has been surviving that loss without the need to punish myself for it.  Truth is, I’m really not that important! Things happen in life, and it’s not always my fault.