Category: Lumpy


Imperfection

For about a week now, I’ve been feeling this lump just beneath the hinge of my jaw. It’s movable, painless, and more solid than I would like, but it’s also small enough that I’m going to wait until my next appointment with the new oncologist to have it checked.

I haven’t mentioned it to anyone, not even Erick, until last night when he saw it and asked about it. It worried me that he could see it. He said it made my jawline look pointy.

Last night I had a dream about the cancer returning, but this morning the lump seems smaller, so I’m less concerned. I remember Dr. K telling me that from this point on, I’ll likely be hyper-sensitive to any lumps, bumps, bruises or node-swelling. He’s absolutely correct. This time around, however, I feel a bit of denial for if the cancer did return, my treatment options are limited and grueling.

I don’t think the cancer has returned, but the worries occasionally resurface.

 From the speech I delivered today at the 20th Survivor’s Day Celebration: 

In 2004, I learned the story of a young woman battling diffuse large b-cell, a non-Hodgkin’s lymphoma while running for the title of National Cherry Queen.  I was in awe of her strength, determination and wit and when she passed away in 2005, I began researching the cancer that had killed her.

A year, almost to the day, following the publication of an article I wrote on the correlation between non-Hodgkin’s lymphoma and agricultural practices in Northern Michigan, I was diagnosed with the very same cancer.

In that moment, I would have given just about anything to turn back time, to reverse my diagnosis, but the first important lesson I learned out of surviving cancer was that every step is one step forward.  There is no turning back, I voiced the words, “I have cancer”and began a new journey.

When I reached the beginning of treatment phase last October, I quickly developed two primary goals in life.  The first was to make Dr. Kohler laugh and the second, and equally important, for the world needs more laughter, was to survive.

I am a survivor.  This doesn’t mean I stood with a sword and armor against cancer, battled it out and was victorious.  It means I took one step forward each day, no matter how heavy the load on my back.  No matter how weak and pathetic I felt.  Being a survivor doesn’t mean I won’t die someday from cancer, it just means I won’t let it kill my hope for what lay ahead.  It took me a while to figure out the difference.

We recently lost a friend to Hodgkin’s lymphoma.  She was diagnosed at 18 and had three recurrences in the last five years.  Whenever I received correspondence from Alese, or when she blogged, she signed her name Alese 2, Cancer 0.  Her third recurrence brought with it many difficult and grueling treatment options and after several months, she died from complications relating to treatment.  She was 23.

Alese touched many with her story.  She blogged about her treatments, her feelings on having cancer and being a survivor and when she could no longer continue with the blog, her parents continued on her behalf.

On the day of her passing, I, like many, felt a deep sense of loss.  After all, it was Alese who showed me how to be brave, even at those weak and pathetic moments.  She demonstrated courage and had a vitality that went well beyond her age and it seemed a tragedy to lose someone like that to this horrible disease.

As the evening progressed, I thought about how many people Alese had reached.  And I thought about how even after her passing, how strong her legacy is and will be for many years to come.  In that sense, the score will always be Alese 3, Cancer 0.

Just last week, I received a call from Dr. Kohler’s office with the results of my last CT Scan.  All clear!  I voiced the words that morning, “I’m in remission” but this time it was more of a song.  I thought about that word, RE*MISSION and realized I am embarking on a new life, a new mission and celebrating each day unfolding no matter how mundane.  Dr. Kohler wasn’t the only one I wanted to see laugh more – I wanted it for me as well.   So, while my experience with cancer shook me to the core, it also opened my eyes to the possibilities and opportunities each day holds.  Cancer taught me to laugh more, smile more and to live my life despite the possibility of illness.

And that’s exactly why they call us “survivors.”  The outcome doesn’t matter, but rather what emerges within us:  a renewed sense of courage, a desire to reach out to others, the realization that we are in this together and that no cancer can destroy our hope for the future.  

The Horse Princess did very well in her play today. And we all made it! Erick rigged a costume that was adorable and Ava was extremely gracious with all of the attention she received. Her grandma brought her flowers.

I went to see my internist this morning before the play since I’ve been sick now for a good few weeks. She told me I have bronchitis and since I’m still recovering from the treatments, prescribed some mild antibiotics and an inhaler. The inhaler is a rather strange device.

The Record Eagle is doing a feature on our story for April 4th. Remember, if you are interested in a great concert for a good cause, visit ImperfectlyYours.com.

The doctor told me today that when I came back with lumpy (I should call him lymphy), she was concerned. She said that a lump that size with lymphoma usually means it has already spread, but I was extremely fortunate. Not only was I lucky to have caught the disease so early, but I was also lucky my immune system held it at bay. Yay body!

At the play, I thought about how much we’ve all grown this year. I didn’t care so much about capturing every moment on film. Rather, it was preserved where it belongs, in our hearts and in our memories of time spent supporting, encouraging and enjoying one another. Yay Horse Princess!

For the readers: Were you ever in a school play? If so, what part did you play?

I was watching this woman riding English in a jumping competition and feeling envious of fearlessness. She and her horse jumped again and again in what looked like one perfect fluid motion until the final jump when the horse turned too abruptly and the young woman fell hard. The camera zooms in on her form as she rises slowly and waves to the audience that she is okay.

I sometimes think surviving cancer is like riding on horseback. I want to stay on the horse, but it’s not always up to me what happens next. I can only work with the horse and offer trust, but there will never be a guarantee that I won’t fall.

It’s terrifying.

We made it through the third treatment today. This one has pretty much wiped out any energy I once had, but it’s a temorary condition and I know that now. I’m a veteran these days, having already done this twice before. At the infusion clinic, the nurses call me Sam and treat me like family. I see them every week and it makes it so that I’m no longer very nervous at the start of each infusion. This time I made an attempt to show my mom how to play chess, but when she started winning I knew the drugs were probably doing their thing.

I’m now home and very sleepy. So far, I’ve been able to eat and drink normally, so that’s a relief. The only real side-effect seems to be fatigue. Even the steroids no longer hype me up to the level they once did. And the best part is – only one more to go!

I confirmed this tidbit with Dr. K today. He told me they couldn’t confirm that the lump I found wasn’t a lymph node, so we’ll have to keep an eye on it. Most likely, it’s the lipoma and I’m not really allowing myself to worry about it any more. It feels like a mushroom just beneath the skin. The lymph node they removed felt like a large, flat rock. That little difference helps me sleep at night.

I digress… So, finding out about the possibility of another lumpy spurred me to get some confirmation from the doctor about whether I have future treatments above and beyond the one in Decemeber. He said he was fairly certain that would be the last. He also said they will radiate the area around the incision and then possibly the next group of lymphnodes up from there.

I made him (my oncologist) a pie for helping to save my life. Seems small in comparrison. He’s a good doctor and I’m grateful to him for being so alert and aware of what is happening. He told me the last time I saw him to let him do the worrying. While I get through this treatment, I’ll take him up on that offer. I’m simply too sleepy to be worried right now. I’m just glad to be home on my comfy couch with my mac and a gug to snuggle. Does it get any better?

I’ve often joked about all of my imperfections. I have lots. A little imperfection in the DNA of one of my cells distinguishes me now as someone with cancer.

Though imperfection runs in my blood, I am feeling okay. I was in contact with some very kind, very helpful women yesterday who are part of a support network in Traverse City. They answered my questions – even the silly questions like, “What is remission? What is cancer?” and the more serious questions, “What is the survival rate for b-cell lymphoma?”

I received a packet of information earlier today from the Leukemia/Lymphoma Society (LLS). Inside the packet, I found a red bracelet with a blood drop on it and the word RELENTLESS written across it. In the card that accompanied the bracelet, they explain LLS is relentless in its pursuit of a cure. And so I slipped the bracelet over my hand and studied the simple message for a moment. I never thought I’d find comfort in something like this, but it reminds me there are lots of people outside my own circle who have been impacted by NHL and other blood cancers and that we are in this together.

I’ve always been somewhat relentless in my personality. And I’m certainly not going to let such a tiny imperfection get in my way. Afterall, I have children to raise, a husband to care for, and a life to live.

Last night Erick, Marc and Sarah surprized me with dinner and a movie. Before dinner, Erick, the girls and I walked around downtown. It was drizzly and coldish, but downtown looks pretty in that kind of weather. We ate at the Blue Tractor (was once Dills, Boones). Dinner was awesome! And I drank of glass of the local Pinot Noir which made me really dizzy and happy.

Later, we headed to the mall for Talladega Nights. One of the before movie ads for Yahoo had me laughing harder than the movie, but the movie was funny too.

Erick and I both felt rejuvenated after all this fun and this morning we’re both in good spirtis. Speaking of spirits, the girls made ghosts out of cloth yesterday with bells in their heads, so when you pull the string, they jingle.

I really want to ride again. I gave up lessons because of all the financial stress coming our way, but I really miss it. I’m going to try to get some less expensive Blue Cross insurance until March (when Erick’s Blue Cross offers open enrollment), so hopefully that will help.

I called the oncologist’s office to ask some questions and they said they’d call back, but they haven’t yet. Probably today. I think they should have a person available to question the day after the tell you you have cancer. It only seems fair.

Anyway, hope everyone has a great day and enjoys this wonderful fall weather.

Diagnosis is in…

Large B-cell lymphoma, a non-Hodgkin’s lymphoma. Oh, the irony. I wrote a research paper on NHL last fall.

So, here it is: I have cancer. I’m not sure what to think, just seem to be fluxuating between emotional and really calm. The doctor was calm, so that helped. I wasn’t expecting his call until next week and though I was somewhat prepared for the news, I felt strange. It was a “this thing is in my body?” feeling.

I see the oncologist in October and will have some scans done before we decide on a treatment. If anyone knows anything about this form of NHL, please feel free to share.

Path(os)-ology

So, the study of things that cause suffering?

I met with the surgeon today. He drained the incision. He used this huge needle, but I hardly felt any discomfort because he went through the incision. What a relief! He couldn’t get all the fluid, but he got a lot and I’m no longer feeling like the three-breasted woman.

Before the procedure, he took the time to inform me that my biopsy results would be another week. He said he had talked with the pathologist who said he suspected lymphoma. On the bright side, he said it very calmly, which conveyed to me that even if it is a form of lymphoma, there’s a lot we can do and it’s far from a death-sentence.

Erick and I are talking about going to Canada for a treatment by Dr. Earl Sweet. He’s a well-known chiropractor Erick has worked with in the past. He teaches at a chiropractic school in London and has his own lab where he has developed some impressive treatments for cancer and other ailments. I think I would like to try him first and then consider the medical model, if isn’t sucessful.

In other news, the girls are doing wonderfully. Lucy is learning her shapes; Ava’s memory is astounding; and Kennedy is learning addition and subtraction and doing well. The girls are growing wheat grass and can tell you what the grass needs to grow! Yay gals.

On my nerves

I’ve never experienced nerve pain before. I’ve heard it described as a searing pain that radiates out from the affected area. That’s about as well as I could describe it. Sleep is difficult at best. I awoke with pain so severe that the only thing I could do is moan and bite my blanket. I did the same thing in labor, but that pain was acceptable.

THIS pain is getting on my nerves (pardon the pun). My doctor is available afternoon at 2:30 and Erick promises to be home around noon, so that will help. Right now, I’ve asked the girls to play with blocks in the learning room and Lucy is napping (thankfully!) on the couch. I just want to cry.