Ch-ch-ch-ch-changes

Radiation – check.  Surgery – check.  Now, phase 3 of my recovery begins.  Today, I start chemotherapy, which is sure to bring many changes.  Of course, it could be argued that changes started to occur the day I received my diagnosis.  But those changes have mostly been invisible (except for my leg, which can be hidden).  Chemo will bring more obvious changes that can’t be hidden, and it’s OK – I’m ready.  Interestingly enough, today’s topic in my daily devotional is “bloom” – and that’s a wonderful way to look at this next part of my journey.

I’m receiving in-patient chemo, which means I go into the hospital on a Monday and receive three medications via infusion until Friday.  I get a two-week break and then repeat.  I should be finished by June or July.  I’m curious as to what the first week will bring and how it will feel, but I’m not really nervous about it.  I consider myself to be cancer-free and chemo to be my friend – an extension of my little army, killing any rogue cancer cells floating around my body (think “Fantastic Voyage”).

Chemo isn’t always very effective with my type of cancer and I understand a lot of patients don’t opt for it.  However, my oncologist says I’m young (God Bless him!) and healthy, and since my tumor was aggressive, chemo is a no-brainer.  The truth of the matter is that I would’ve opted for it anyway, which follows my life philosophy — not getting to the end of my life and regretting not doing something.  Of all things, I don’t want to regret not doing everything possible to ensure the cancer doesn’t return.

On Friday when I leave the hospital, I’m going straight to my hairstylist and have him shave my head.  I couldn’t control cancer entering my body, but I can control some of its effects.  Those of you who know me know that I’m not the type of person to wait around for my hair to fall out.  I’ll take that matter into my own hands, thank you very much.  My hairstylist has been very sweet and says he considers the shave a privilege.  He’s already gotten me a short red wig that he says will mirror my current look.  (I actually toyed with going blonde and becoming “Anastasia,” but trust me when I say that look wasn’t for me!)  Actually, I really don’t see myself in a wig at all, except for a couple special occasions coming up.  I think the next time you see me, I will much more likely to be sporting a rock and roll bandana.

“Strange fascination, fascinating me. Changes are taking the pace I’m going through” — David Bowie

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This Too Shall Pass

It has not been a good week.  On Tuesday, I underwent an outpatient procedure to have a MediPort placed underneath my collarbone through which chemotherapy will be administered.  Because I would be sedated, I had to have an IV.  (I hate IVs.  I have small veins so they always get put in my hand, and then I feel like a puppet.) I had been told by the medical personnel as well as others who had gone through the procedure that it was no big deal, but, for me, it was.  I’ve experienced a great deal of pain at the site the past couple days.

I’ve tried to keep in mind an adage that one of my dear childhood friends has always said: “This too shall pass.”  When I was in the hospital, I not only had one IV, but also a second IV as well as three other tubes connected to me.  I couldn’t move without making sure that they were all where I could see them for fear of pulling something.  I was frustrated and agitated.  Now, looking back, I realize the discomfort lasted only a week, which is not long in the big scheme of things.

I suppose the notion that something bad, hurtful, or uncomfortable will pass is an idea we need to embrace throughout life.  It’s an idea we are exposed to fairly early – we learn how quickly a boo-boo can heal, how disappointment can dissipate, how the heart can mend after we are certain it has been broken.  Looking back on my life, there are several major experiences I never thought I would get through.   But I did.  We all do.  We put one foot in front of the other and, before you know it, we have moved beyond that which we thought we would not be able to leave behind.

I can already sense this in my latest journey.  It seems ages ago since I received that devastating diagnosis – those days passed.  The 25 days I spent driving 100 miles every day to receive radiation seem like a memory – they passed.  Even the surgery and hospital stay seem like a long time ago, leaving only the physical reminder of the procedure – it passed.  I know such will be the case with my latest discomfort. This too shall pass.

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That’s an Affirmative

As a Christian, I grew up learning to pray, and prayer has been something constant in my life.  However, it wasn’t until I was diagnosed with cancer that I learned about affirmative prayer.  My neighbor gave me a book of inspirational writings and scripture, and it was here that I first heard about this type of prayer.  Looking into it more, I found out that affirmative prayer is said with the expectation that whatever you need has already been given to you.  I first thought, “Well, that seems a bit presumptuous!”  In fact, it made me downright uncomfortable to be assuming that God would grant me my request rather than asking that He consider it if it was His will.

I continued to look into it further and found that there is a basis for this type of prayer in The Bible:  “So I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours” (Mark 11:24).  The key phrase here is “have received,” not “will receive” or “may receive” but “have received.”  If we believe that God already knows our needs, it makes sense that He would not wait for us to identify them to Him.  I also saw yet another example of my mustard seed at work, believing that, with faith, all things are possible.

Wikipedia refers to affirmative prayer as “focusing on a positive outcome rather than a negative situation.”  There’s also the idea that what we put out in the universe comes back to us, whether it’s a smile, kindness, or positive thoughts.  So I changed my prayers to being more affirmative and, for me, I have felt a difference.  I feel more positive and calmer during this life-changing journey I’m on, and I do believe it has played a large role in my healing.  But that’s another story.

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With a Little (a Lot of) Help from My Friends

I am not one to ask for help.  Box too heavy to lift?  I’ll carry the contents piece by piece.  Can’t figure out a math problem?  I’ll work on it until I do.  Ask for directions?  No way.  For me to now be in a position where I must ask for help has been very difficult.  Since my diagnosis, I’ve been blessed to have many friends and colleagues offer their support in any way I need.  Because it’s not in my nature to accept help, I have graciously declined, opting instead to figure out a way to do things myself.  However, my surgery has greatly restricted what I can do, and I now have been forced to rely on the generosity of others.

I’ve always been very independent, so asking for help makes me feel weak, even lazy.  However, my perspective has changed a lot in the past couple months, thanks to the wisdom of two close friends.  As my radiation was nearing an end, I was having lunch with one of them and we were talking about my independence and hesitance to accept help.  My friend has known me for a long time and knows my personality well.  He asked me to look at the offers for help in a different way.  He said that perhaps God had put it upon people’s hearts to help me and, if I didn’t allow them to, I was actually depriving them of something they felt inspired to do.  I like to think of myself as someone who cares deeply about others, so this really struck a chord.  More recently, a colleague commented on a Sharing the Strength post by saying, “ . . . those who care about you want a chance to be strong for you, too!”

I realize now that accepting help from others helps them as well as me.  It is gradually becoming a bit easier for me to acknowledge my physical limitations and ask for, and welcome, assistance when I need it.  My cousin, who is a cancer survivor, told me, “Strong is being smart enough to know the day(s) you have to let down,” and she’s right.  I am very blessed to be surrounded by those willing to give so much of themselves to help me.  I know I will not always be as restricted as I am right now and, one day, I hope to be able to return the deep friendship, love, graciousness, and generosity that have been shown to me.

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The Tapestry of Today

I’m not going to be alive in three years. I won’t see my grandson grow up. I’m so full of life – why is it being cut short?

You can’t get much more negative than that. Yet, those were the exact thoughts going through my head during the first few weeks of my cancer diagnosis. As a result of what I was reading on the Internet, I felt I had been handed a death sentence that was going to be carried out in swift action. I spent almost an equal amount of time kicking myself for things that I “should’ve” done: How could I have missed this? Why didn’t I go to the doctor sooner? If I had gotten an MRI on my arthritic knee, maybe the tumor would’ve been found by accident when it was small.

With thoughts like these swirling through my head, it was difficult to function. When one foot is in the future and the other in the past, you’re not going to move anywhere. In addition, the problem with negative thoughts – besides being downright depressing – is that they take the place of so much joy that could be experienced instead. I knew I had to stop if I was going to make any progress on my path to wellness. It was about this time that my mustard seed focused me on the faith I needed to not obsess about the future so I could focus on today instead.

Someone somewhere once said, “Today is a gift; that’s why we call it the present.” My daily devotional has referred to a tapestry of life that is woven daily. Both are representations I embrace. When we think of the future and what might happen, we take time away from the certainty and beauty of today. We are surrounded by so many gifts if we just open our eyes – love, family, friends, nature, a job, transportation, a home, food – each of them waiting to be unwrapped, all coming together to weave a one-of-a-kind design that we’ll miss if we are not present in the moment. We can never get back today – and that’s really all we have for certain, regardless of whether you have cancer.

I’m human, and it’s natural for negative thoughts to sneak into my head sometimes no matter how hard I try not to let them. When they do, however, I try to refocus on the many blessings in front of me so that I don’t miss the beautiful tapestry of today.

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This We’ll Defend

If the mustard seed has become a symbol of my faith on this journey, dozens of little green plastic men have become the symbol of my actual battle.  They began fighting cancer nearly six years ago, but not with me.

My sister was diagnosed in April 2008 with breast cancer.  When she began chemotherapy and subsequent infusion therapy, I sent her an envelope filled with plastic Army men every treatment – for 18 months.  Unbeknownst to me, she kept her army, and several days before my first radiation treatment, the soldiers started returning to me.  They had been retrained to fight a different kind of cancer and redeployed on a new mission!  The soldiers continued to arrive each week of radiation, accompanied by “battle orders,” creatively written by my sister.

I always had a soldier with me – in my pocket, my purse, my hand.  Every day, as I lay down on the radiation table, I would hold one.  The little green man became quite the talk among the radiation technicians, who said they had never seen a patient carry something like that.  Angels and crosses, yes; soldiers, no.  So on my last day, I left a solider with each of them.  I ran into one of the technicians recently who said the soliders were still in formation, protecting the radiation room and those being treated in it.

After inflicting heavy damage to the enemy (my tumor) during the radiation treatments, the soliders got a well-deserved rest.  Then one unit accompanied me to the hospital for my surgery; the next day, more rolled in on a vintage G.I. Joe vehicle, ready to stand guard to my room as I began my recovery.  Now that I’m home, they will continue to be a visual reminder of the battle I’ve undertaken and how I am winning.  After all, these forces have a proven success record; my sister, who also had an advanced, aggressive form of cancer, has been cancer free for almost six years.

“Accept the challenges so that you can feel the exhilaration of victory” — Gen. George S. Patton

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The Mustard Seed

Even if you’re not religious, you most likely have heard the story of the mustard seed.  It appears in Matthew 17:20, when Jesus is talking to his disciples: “You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move.  Nothing would be impossible.”

The mustard seed has become a major part of my fight against cancer.  I am a Christian and was raised to hand things over to God and not to doubt or worry – much easier said than done, even on a good day.  But when you’re diagnosed with cancer, it’s hard not to worry – about everything.  Every time I would start to fret about my treatment, my future, my finances (the list goes on), I would then start worrying about worrying!  It was like a constant mental tug of war.  I felt that if I truly believed that everything was going to be OK, I wouldn’t (and shouldn’t) be worrying.  It was a vicious circle with which I became obsessed.

Then one day I was reading a daily devotional and the scripture for the day was about the mustard seed.  I felt a calmness and assurance I hadn’t felt in a long time.  Have you ever seen how small a mustard seed is?  It’s tiny!  I thought to myself, “I already have that much faith.  If I believe in that, everything will be OK.”  My outlook changed that day.

When I was a little girl, mustard seed necklaces were popular – glass spheres with a mustard seed suspended in the center.  I didn’t have mine anymore, so I made one.  I ordered a perfume vial, about the size of a dime, from eBay and put a mustard seed in it.  I began wearing it the first day of my treatment and have continued to wear it ever since.  Coincidentally, shortly before surgery, one of my childhood friends from my hometown gave me a mustard seed bracelet, not knowing how important the mustard seed had become to me.  It is visual reminder that a little faith can go a long way.

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Your Best Friend and Worst Enemy

The Internet.

Admit it – it’s the first place we go when we have a question.  Enter a few words into a search engine and, voilà, pages of answers automatically fill the computer screen before us.  But there is a fine line between becoming informed and finding out too much.

If you’ve searched the Internet for “soft tissue sarcoma” (and I know you have because you’re here!), what you found was probably not the most uplifting reading.  But, because of the rare and special nature of this disease, it is vital to be educated, especially in the beginning when approaching it the right way can make such a big difference.  At some point, however, you need to stop reading because we are people, not statistics, and our stories are individual, not necessarily reflective of a scientific study.

I’ve told many people that my inquisitive nature on the Internet saved my life.  When I first started to question the puffiness in my leg, I Googled something like “swelling on thigh” and immediately learned about a serious, rare cancer called soft tissue sarcoma.  Armed with the information, I saw my primary physician who didn’t think the swelling was anything to worry about it.  I was persistent and she finally agreed to an MRI.  Had I not read about soft tissue sarcoma, there’s a very good chance I still wouldn’t know I had it (my mass was buried deep in my thigh).  The Internet information also played an important role in the biopsy.  When the MRI showed a suspicious mass, I was offered the opportunity to have an immediate biopsy by a general surgeon, but I had read how important it was to have a sarcoma specialist conduct it, so I waited.  The importance of the proper biopsy procedure was reinforced many times by the specialists at Roswell Park Cancer Institute.

The helpfulness of all the information that had flooded my computer stopped there.  Reading information on staging and survival rates was like watching a train wreck – I couldn’t stop looking, and now, unfortunately, those facts are seared onto my brain.  Most of the time, I can push them back to a tiny spot way in the back of my head and forget about them.  I have found, however, that when they surface, that’s when I have my down days.  Chances are that you, too, have already read too much.  If this is the case, let’s encourage each other to remember that those Web pages, while helpful, don’t necessarily tell OUR story.

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Being Strong is Hard

“You’re stronger than you know.  I can see that.”  That’s what the front of a card said that I received the day before my surgery.  Inside, a student had written: “This card was perfect for you, mainly because every time your name comes up in a conversation, I feel that ‘strong’ is the word that describes you.  This, of course, is 100% accurate!  If you have never thought of it before, your strength is what defines you and it is a trait that we all can see.”

“Strong” is a word I’ve heard frequently in the many well wishes I’ve received since being diagnosed with cancer.  I suppose I always did see myself as a strong person, although I’m not sure I knew what being strong really meant (perhaps it was just another way to say I’m stubborn!).  And I certainly never thought other people could see something like strength — what IS it they see that makes them think someone has this characteristic?

But being strong is hard, especially when everyone seems to hold you up on a “you are so strong” pedestal. No one can be strong 100% of the time.  So what happens on the down days?  Is it a weakness to cry?  Do you have to do it alone and quietly so no one sees you in order to keep up the illusion that you are that strong person everyone thinks you are?  Even as I write this, I’m wondering whether I really want to post this and expose that, yes, even I am vulnerable.

While I may not always see the strength in me that others apparently do, I’m grateful to them for telling me and I hope they will continue to do so, because reading those comments gets me through the rough days.  Perhaps that’s what strength is – knowing when you need to rely on others to lift you up.

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