Tag Archive: lymphoma


Yar.

“Yar,” said the doctor as the pain receded and he and the nurse stood just out of sight.  He could have used any mild expletive, Darn, Shoot, Piss though Damn would suit him better or had it been me watching my doctor drop the core from my bone marrow biopsy, I might have chosen something more severe and rhyming with “puck.” 

Yar, seemed almost a hybrid of “Yikes “and a piratey “Argh.”  And coming from a distinguished hematologist-oncologist who had spent half his adult life in college or in the lab trying to beat lymphoma, it seemed absurd.  “I dropped the core,” he said, “I’ve never dropped the core.”

“Yar?”  I questioned, my voice slightly muffled by a pillow.  Lying face down with my back and half my buttocks exposed to the cool air, I asked more specifically this time, “What does that mean?” 

The nurse took hold of my hand a second time and my doctor said simply, “Take another deep breath.” 

I groaned, as the drill reignited sensation all through my body.  He could numb the skin, he had told me, but not the bone.   When I asked him whether it would hurt, he didn’t mess around, “It’ll feel like someone’s ripping your intestines out through your belly-button.”

And yet, something in his tone when he uttered one unfamiliar, unexpected word distracted me from the pain.  Had he planned this?  Might this be another technique used to control pain?  Yar, I thought, eyelids shut tight over my own vivid imagination.  I could feel the drill cutting into my pelvis.  The pressure was enormous and the sound was, well, “Yuck.”

Not even “yuck” covered it completely.  This was an entirely new kind of misery.  And perhaps a second bone-marrow biopsy performed on top of the first does deserve a new kind of descriptive-expletive noun, verb and adjective rolled into one short, breathable syllable. 

Yar.

A strange coincidence prompted me to think about whether or not we should attribute meaning to the experience.  When I shared the story of our strange coincidence with friends, I received numerous letters on either side of a fence dividing those who believe there are no coincidences and those who see coincidence as nothing more than just that: a coincidence.  

When I wrote about diffuse large b-cell lymphoma, published a paper on the topic and then fell ill with the very same form of cancer one year later; we saw the same debate.  In both strange set of circumstances, I’ve noticed a similar pattern in how I interpret these events personally.  

I don’t like to think of the world as so black and white that when two dissimilar events occur at random with some corresponding theme, I dismiss it totally as some random inevitability.  The word coincidence, after-all, is not defined as two events that happen simultaneously without any connection – it is merely defined as two events happening that appear unrelated.  So, I take a little from both camps.  

When yesterday, my youngest child said something out of the blue relating to a house we had put an offer on months earlier and at the exact same time a message appeared in my inbox from the owner of that house offering it to us at our price, some believed this was a sign that we should buy that house.  We certainly like the house.  However, when I look back at a week spent rental-shopping and had just found a place I liked, I wondered whether this was not so much a sign that we should buy a house, but rather another diversion.  Maybe a different kind of sign – one that reminds us we are far from the place where we belong.  Is it possible the universe really does speak to us?

This brings me to “the Secret” – that series claiming we control the universe with our thoughts; the Law of Attraction.  Take away the magic of that statement and what we have is a series of choices that invariably lead us to a presumed outcome.  That’s not so difficult to digest.  It doesn’t even require a quantum physicist explaining it to me with incomplete experimental data.  

So what of coincidence?  Are they really as random a set of acts as some believe or do we have something to do with their “inevitability”?

Needles have been replaced, sewing machine ramped up, socks and microfiber purchased in bulk and Sock Monsters are now sprouting up daily:  

In the beginning, there were socks.  Soon these socks were altered to form the tiny bodies of multi-fibered, colorful sock monsters.  All appendages are sewn together using a sewing machine and are attached by hand.  Next, the monsters are stuffed:

These three are brothers.  Erick suggested a more sophisticated line for those Uptown folk who match socks and underwear, so from pairs of casual socks found mainly inside loafers and beneath dockers, we’ve created the “Uptown Monsters.”  They’re all sewn up and are now ready for lips and eyes:

Buttons are chosen carefully by the girls to highlight various features and colors of each individual monster. The buttons are then pinned in place to verify proper color-coordination by our fully-certified crayon-carrying children.  Next, the monsters pose for baby monster photos and get to sit on the desk for the day in preparation for their future in the business of making-people-smile-at-work while raising money and awareness in the battle against cancer:

My youngest inspired the three-button sweater-vest concept.  She enjoys drawing sock-monsters as much as snuggling with them:

Thank-you for taking the time to learn more about these ever-curious oddities.

Bye.

It’s really challenging dealing with fatigue.  It’s not a symptom that’s obvious on the exterior.  I can fake feeling good in public, but the feelings of inadequacy that gather internally become evident after a short while.  Emotionally, it’s a huge drain trying to keep things going while every muscle feels twice its weight and your shoulders slope forward out of weakness.  I had a doctor once tell me fatigue causes your body to fold in on itself.   I felt like a flower at the end of its life; each petal curling inward.

I think that’s the trouble with fatigue – the failure to see improvements after a few days, makes the sufferer very weary of getting up in the morning.  And this feeds into a blanket of depression feeding the fatigue.  Erick was my hero- taking me out to the park last evening as way for me to reconnect with nature.  I was still tired, but immediately I noticed an improvement in my outlook.  Today is much improved and I’m realizing the importance of finding ways to cope with stress.  One of the driving factors in my three horrible days was my inability to cope with any of it accompanied by my stubbornness in acknowledging how just bad I felt.  

It’s hard going through treatments for cancer, and some of the lasting effects are equally as difficult to manage.  I think the key is to know how to manage stress – what brings pleasure into your life?  What allows you to relax and heal?  And remembering it takes real strength (not the physical kind) to recognize what needs to be fixed and to set out for a solution.  There’s nothing weak about that.

Things are really heating up here in the south.  I’ve heard it rumored that running in the summer air down here is like swimming.  Only underwater, you try not to breathe – outside, you haven’t a choice. It’s a challenge to get enough air right now, but I think this will only help in the long run (pardon the pun). 

I’m amazed at all the support coming in via email and comments regarding the upcoming fund-raising and half-marathon and all I can say is **Thank-you!**  It means a whole heck of a lot to see both friends and strangers reach out with encouragement.  Agreeing to run a marathon is not an easy decision and in this case it’s compounded by the fund-raising goal.  I’m in a new town where I know very few people and I’m not a natural runner.  As with the cancer-battle, this isn’t an act of physical endurance as much it is pure determination.      

This morning, near the end of my run, I thought about the people I’ve met who’ve inspired me.  Thinking of them took away the awareness of my fatigue and allowed me to make one more stride after one more stride until I crossed the imaginary finish-line.  Out of breath from trying to breathe in the thick air, I thought to myself, only twelve more miles to go!  Right now it doesn’t seem possible, but with each stride I’m a little closer to my end goal.  And as a team of mothers and fathers; sisters and brothers; husbands and wives and children; taking on this disease and running full tilt toward a cure; stride by stride, we’re that much closer to our goal for a cure.  

Tomorrow, Celli and I are walking for a cure for human and canine cancers: The 2008 Dogs Walk Against Cancer.  Lymphoma is a common cancer for dogs, so we’re proud to be taking part in an event to raise money and awareness for we two-leggers and our four-legged friends.

Thank-you again for your support!

I found this delicious phrase on a Cafe’ Press bumper sticker raising money for breast cancer awareness.  It’s time to start brain-storming fund-raising ideas and today I’ve been looking into selling items online to raise $2400.  I’m looking for funny catch phrases like F$%& Cancer or Kick Cancer’s Butt: Been there, done that!  I’m hoping for bumper-stickers, mugs and t-shirts.  Feel free to share your catch-phrases and ideas!  

I’m considering goofy things like “Pet a beagle for a dollar” on the sidewalk, so really, no idea is too silly to post.

Every year Team in Training members raise thousands of dollars for the Leukemia and Lymphoma Society (LLS) participating in marathons, half marathons and triathlons.  And every year thousands of families just like mine benefit from the support of the LLS in battling blood cancers.  So, I’m considering running in the Kiawah Island Marathon (off the coast of South Carolina) this December to give something back and to work on strengthening my body.  I also think it would be a great way to meet people.  All expenses are paid for training, travel and lodging at LLS events, but you need to raise a minimum of $2400.  Could I raise $2400 in time?!  Training begins August 2nd.

Ideas for fund-raising?

Gratitude

I was just re-reading some past entries and the encouraging comments readers made. It brought tears to my eyes to remember that battle, but more so to feel the love from friends, family and even strangers who are united in the same cause: To survive and beat this disease. The wisdom in the messages left by fellow bloggers was simple, yet profound: Snuggle your babies or do whatever reminds you of why your fighting so hard; take a break and let others help; take in each moment with gratitude; and my personal favorite, “FUCK CANCER.”

Not only did these words of comfort and advice resonate then, they resonate still. Your support crossed miles and is timeless. I am forever grateful for the courage our friends and family put forth, the research they did on their own to better understand blood cancers, the gentle hand in helping with our girls or preparing food to feed our family when Erick was working hard to step in where I left off. And my gratitude to my husband and children who did their best to make life “normal.” As I’ve often said, normal never felt so good!

There was a moment, after my first treatment, when I considered letting the disease take its course. The first treatment was horrible. I developed blisters inside my mouth and throat and was too weak to move or eat much. I hated myself for feeling so weak. Erick sat with me and tried to give me the next dose of Prednisone, but I told him “No more.” I was certain death would be a welcome reprieve to this misery. My husband persisted and we wrapped the pills in peanut butter and bread so they would go down easier. Reflecting on this moment, it was definitely my weakest, but with Erick’s help, it was also courageous. Everyone battling cancer learns early on that strength in this fight does not come from muscle, but from somewhere deeper. It emerges when we think we cannot move forward and carries us until we can stand on our own. We learn early on, we are stronger than we ever before imagined. And when we emerge outside our treatments, the challenges we face daily pale in comparison to our darker battles.

The things that stay with me today are not the difficulties of the treatments, but instead the kindness, the love and support; the greater journey that extends out before me.

With gratitude,  Samantha

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Yesterday I met with Dr. K, my oncologist. He’s my hero for not only was he mindful of my treatments and care, but he was always careful to remember things about me as a person first, patient second. His honesty could be brutal at times, but this I value still for it allowed me to forgo unnecessary worry.

After my blood-work, in which they found a vein successfully the first poke (and in my arm)! I talked with Dr. K about how I’ve been feeling and what lay ahead. I told him I’ve been well and he checked me for the usual lumps and bumps and listened to my heart and lungs and then smiled his broad smile and said everything looks as good as I feel. We talked about my plan of action once I move down to NC and then he shook my hand and said, “Goodbye and good luck to you.”

I thanked him, but it didn’t seem enough just to say thank-you when the person standing across from you has saved your life. And yet, I know he knows how grateful I am for all he has done. When he asked about my heart, I retorted, “Have you considered cardiology as a side career?”

Yesterday was about more than Dr. K. It was about walking away without scheduling another scan. It was the certainty with which Dr. K said “No” when the nurse inquired about a CT scan for January. It was like I had been set free and my life lay ahead of me in long beautiful years that stretched out infinitely. For a moment, I forgot about vulnerability and disease.

Yesterday I said things like, “I feel good.” “I’m well.” “No night sweats, no fatigue.” “I can run and it feels great.” And when Dr. K asked whether I “felt like I had returned to all normal day to day activities,” I happily answered YES! And then some.

I know I’ll never completely let go of this experience. There is a scar still visible to the naked eye and medication I now rely on to some degree and there are times when I must just let myself cry. Along this path, I’ve met and loved some remarkable people who unfortunately succumbed to this disease and even a part of me and who I was fell away as I continued on along my own path. So, in that sense, I still grieve. At the same time, I celebrate each small victory in my return to normalcy.

I will always remember the kindness others bestowed upon me, often by strangers united by the same cause; to beat this disease not with drugs, but with love, compassion, patience and attitude. No matter what happens moving forward, I/We have won over cancer.

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Photo by Dianna McPhail 

For years, I’ve loved this photograph of a woman I never met, who died while my own grandmother was still very young.  She was 30 when she passed of lymphoma, a young woman newly married.  She looked just like my grandmother and in photographs the two are difficult to tell apart.  My mother was named for her and I have carried her image with me house to house, room to room, not knowing that someday we would share the same blood cancer.  I was fortunate to have been born sixy years later.  This photograph reminds me to feel grateful.  The turbulent waters seem to mirror the expression on my great-great-aunt’s face.  Until now, I had not recognized this look.   Today, I know it well.

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And I found this piece of great advice on the back of these government-issued ration stamps.dsc_0103.jpg