Picture this:  a fat, 49-year-old on roller skates, dressed in full body armor (or so it seems, with all the head-to-toe protective gear), using walking poles for balance, creeping along, trying not to fall too often or too hard.

Since chemo, my balance has been somewhat disastrous.  A physiotherapist came to my home to work with me for six weeks between chemo and radiation.  It helped, but the physio exercises could only do so much.  I clearly need to continue working on my balance, so I decided to go the roller skate route!  I can manage only about 20 minutes at a time because it’s so taxing for my nervous system to work that hard.  Nonetheless, I’m reasonably sure that if I stick with it, I will make slow and steady progress.

Having said that, I have to admit that my excursions are not a pretty sight.  Recently, I was creeping along at marina park, the aforementioned fat, 49-year-old.  I was feeling somewhat foolish, and trying to blend into the background, when who should approach, but a five or six-year-old boy on his bicycle.  He was accompanied by his mother, who was on foot.  When the little boy saw me, his mouth dropped open.  His voice full of admiration and awe, he exclaimed, “THAT’S COOL!!!!”  His mom replied, “That’s roller skating.”

Suddenly it dawned on me — I am a primary teacher.  Five and six-year-olds are my constituency!  As long as I’m still impressing them, I’ll be okay.  😉

The holidays were quite emotional for me this year because of last year’s experiences.

At Christmas-time 2009, I was my absolute sickest. On Christmas Eve, I was admitted to the hospital for the second time. I had a high fever and I was vomiting blood because of the Mallory-Weiss tears I had developed. I had cardiac issues that precluded me from being transferred to the oncology unit until my heart rate and blood pressure were under control. My red count, white count and platelets had all bottomed out. My oncologist, Dr. L., kept saying, “we just don’t see this with this kind of chemo; it must be the lupus complicating everything.”

Fortunately, as you know, I survived all of that and a few more months of complications, and I am now in complete remission. Yay!  However, when the holiday season rolled around again, I kept having flashbacks to last year. Every time it happened, I felt sick to my stomach and I felt the tears behind my eyes.

But God had a plan. My next-door neighbors have two lovely girls. Their mom began a full-time job two weeks before Christmas. The girls were used to their mom being there when they arrived home from school. Fearing that they might have some difficulty with the transition,  I suggested that they come visit me after school. That went so well that the week before Christmas, when the girls were off school entirely, they spent all afternoon with me each day. We made donuts to give to a friend. We wrapped Christmas presents. We made caramel corn, watched a Christmas movie and worked on the girls’ present for their mom. We made and decorated Christmas cookies. We filled our time with joy, and guess what? The flashbacks stopped! We had a wonderful time. The girls were exactly what I needed, and I was exactly what they needed. I now have new holiday memories, and I think when Christmas rolls around again in 2011, I will be just fine.

Love and joy come to you!  And God bless you and send you a happy new year!!

I’ve been watching old episodes of  Friday Night Lights lately.  (Terry and I bought the DVDs when we were in Duluth a few months ago.)  I don’t know what draws me to the show, but I am most certainly drawn.  At any rate, in the second episode, there was a sign on a building in the background: “There is No Substitute for Guts”.  That struck a chord with me.  I believe it’s time for me to dig deep and remember what I’m made of.

We hear so much about people bravely fighting cancer.  I don’t think there’s a whole lot of bravery involved in that fight.  It’s not as if you have much choice.  You either do the treatment or you die.  The treatment is hell, but there is really no alternative.  (Things get more dicey when there is little chance of remission.  At that point, the bravery comes in making the decision between treatment and palliation and in sticking with or ultimately revising that decision.)

At least in my case, the bravery comes in the aftermath of the whole thing.  Now is the time to be brave.  Now is the time to dig deep and do the work to get as much of my life back as possible.  Of course, everything is complicated by my other medical issues, but I can’t use them as excuses.  It’s all very complex, and I have to try to figure out how much to push without causing my physical condition to worsen.  Nonetheless, I have to try.

In another Friday Night Lights scene, the football players ran windsprints up and down a hill in the pouring rain as their coach shouted repeatedly, “Champions don’t complain; champions don’t quit!”  Perhaps for all the cancer survivors out there, we should change that to, “Survivors don’t complain; survivors don’t quit!”  I’m going to try to make that my mantra as I go to the gym, clean out the closets, do the crossword puzzles to help with cognitive function, etc., etc.  Lupus and cancer both take a lot from you, but I’m not going to let them take any more than absolutely necessary.

Survivors don’t complain.  Survivors don’t quit.  And there is no substitute for guts.

It has been a  long time since I have blogged, primarily because I haven’t felt that I have had anything worthwhile to say, and partially because I have been extraordinarily tired since late July.  To those who care, I offer my sincere apologies.

It seems that my “new normal” involves feeling wretched physically (I’m exhausted and in pain all the time, and I have bouts of mild to moderate nausea at least a few days each week.)  In spite of my physical limitations though, I am pretty content and happy.  The things I strive for now are different than they used to be.  For the past two weeks, I have been trying mightily to a) make it to the gym even once and b) get some dusting, mopping, etc. done around here.  I haven’t been successful with either one of those things yet, but I will keep trying, and I have faith that I will ultimately manage.  I think it’s the having and reaching of goals that keeps us hopeful, whatever those goals may be.

I’ve been attending church off and on with my friend P., this fall.  After church, we go out for brunch.  It’s wonderful to see her each week and to have a chance to catch up on what’s going on in her life.  I am incredibly blessed by the people in my life.  If it weren’t for my extraordinary friends, I would be miserable.  Instead, I am blessed and happy.

I had an interesting day on Monday of this week.  First, I saw my friend L., who is at home suffering with pneumonia.  I took her a book and an apple crisp to help her pass the time as she recovers.  L. is an extraordinary woman, someone I have admired since I first met her over a decade ago.  She is extremely intelligent, worldly, concerned about others and about the environment.  She is very knowledgeable with respect to a myriad of topics, so discussions with her are wonderful.  However, it’s her caring and empathy that really shine through when you speak with her.  Amazingly, she even does pneumonia with aplomb.  One of the great things about having so many truly phenomenal people in my life is that they all give me models to strive for.  Anyway, I hope L. will be feeling much better soon.  Right now, she needs to rest, but as soon as she’s well again, the world needs her back out there, making the tremendous difference that she does every day.

After seeing L., I had an appointment with a new doctor, a neurologist.  The appointment was pretty depressing.  The doctor asked me why I was there, then asked me questions about my medical history.  Even after I explained everything, he kept getting facts confused, and I was forced to correct him several times.  I don’t think he ever did get things straight.  He then did a number of neurological tests.  One of them involved straight leg raising with my left leg maybe 35 degrees above the examining table.  He then pressed on my leg, and asked me to resist.  That test took all my strength and was extremely painful, but perhaps because I didn’t yelp or moan or cry, he seemed completely oblivious.  When he was finished with everything, he told me that there was no reason for the balance problems I have been having.  He said he would arrange for an MRI of my spine, “in the interest of being comprehensive”, but he really doesn’t think it’s going to show anything of consequence.  He grudgingly stated that the difficulties could be “a diffuse effect of the chemo”, but basically, he left me with the impression that he thinks I am either making this up or I am insane.  Of course, both Terry and the rheumatology fellow in Winnipeg have seen me fall over for no apparent reason, so I suppose that means they are also insane.  Sigh. . .

At any rate, I got a call from the hospital this afternoon.  A woman from the diagnostic imaging department asked me if the neurologist’s office had informed me that I had an appointment for an MRI this morning.  I said, “No!”  She replied, “I didn’t think they did.”  She then made a new appointment for me next Tuesday.  Evidently the days of waiting six months for an MRI are a thing of the past.  I don’t know if that’s because Thunder Bay has two MRI machines now, or if it’s that cancer survivors jump the queue.  I hope it’s the former.  Otherwise, it doesn’t seem even remotely close to fair.

On a brighter note, the weekend is here!  To all you Monday to Friday warriors, enjoy your time away from the daily routine.  Refresh, recharge and do something joyful this weekend.  🙂

And most importantly, remember that you are loved.

Last week, I was in Winnipeg and Kenora.  My medical appointments required the Winnipeg trip, and my overwhelming need to spend time with my friend, A., required the Kenora leg of the journey.  The trip was amazing.  A. ensured that it was all about joy.  I haven’t laughed so hard or so much in an extraordinarily long time.  I had the perfect balance of getting A all to myself in Winnipeg and enjoying her absolutely wonderful family in Kenora.  Every single minute was a healing miracle for me.

The medical “stuff” is still a bit muddled.  Dr. P, my absolutely brilliant rheumatologist, hadn’t received any lab work from Thunder Bay, so she wanted to wait to make any decisions until after she sees the labs I had done in Winnipeg.  She does not want to put me back on an immunosuppressant because there is a small risk of reactivating the lymphoma.  The only lupus drug that isn’t an immunosuppressant caused eye toxicity for me, and we had to discontinue it last May.  At this point, our options are to do nothing or to treat me with more Rituximab (one of my chemo drugs that also works for lupus).

I told Dr. P. that according to recent lab work, I had hematuria (blood in my urine — an indicator that the kidney disease might be flaring).  She said, “Oh, I didn’t need that!”  Depending on continuing lab work, I may end up needing another kidney biopsy to help us decide about further treatment.  Time will tell.  I will be seeing Dr. B., my nephrologist, again June 22nd.  I will see Dr. P. again in September.  Dr. P. is also going to order follow-up CT scans to check for lymphoma relapse because that will help with lupus treatment decisions.  It’s going to take some time and problem-solving to get things under control.  I am extremely fortunate that Dr. P. and Dr. B. are both brilliant, compassionate and extraordinarily talented.  I have complete faith in them, and that’s a wonderful and precious thing. 🙂

Unfortunately, my trip is now over, and it’s back to reality.  This week has been pretty harsh in the reality department.  First, a dear friend’s husband has found a lump, and is dealing with his own cancer scare.  I am praying for good news.  I know what it’s like to be in that scary place before there is a diagnosis and a plan.  With luck, the lump will be benign, and all the worry will be for nothing.  In the meantime, my heart goes out to them, and I am worrying along with them.

While I worry about them, my heart is breaking for all my friends at Hyde Park School.  The class I’m on leave from experienced a tragic accident while on a field trip on Monday.  One of the four-year-old students died as a result.  I feel utterly powerless.  All I can do is mourn with my friends and let them know I love them.  That feels so feeble in the face of such horror.  It is at times like this that I turn to the power of prayer.  May God be with us all.  Amen.

Wow!  I’m already beginning to bounce back (emotionally anyway — physically will take longer).  I’m feeling optimistic about my plans for regaining my health.  I’ll be hitting the gym, walking the doggies, digging out from under the clutter in my house. . .

Of course all of that has to wait until I return from Winnipeg.  I have appointments there with three specialists next week.  I was supposed to see them in November, but chemo made that impossible.  I go to Winnipeg regularly to see these doctors, but this time I’m turning it into a grand adventure.  My dear friend, A., lives about 2/3 of the way to Winnipeg.  I’m going to stay with her on the way to and from my appointments.  I taught her beautiful, intelligent, talented daughter a few years ago, so you can imagine how excited I am about seeing A and her entire family.  While I’m there, I will get to see A’s son’s break dance rehearsal — I can’t wait!  A’s husband is a sweetheart too.  Visiting with the entire family will be wonderful!  To top it all off, A is going into Winnipeg with me!!  My appointments are over two days, so we’re staying in a hotel for two nights, eating out and doing whatever activities we can squeeze in around my appointments and my fatigue.  I’m so excited to have A all to myself for two days!  She is quite a bit younger than I am, but I swear she possesses the wisdom of the ages.  In addition, she’s extraordinarily kind and funny.  We’re going to have a wonderful time.  Let’s hear it for doctors’ appointments!

Written May 16, 2010

In my mask, bolted to the table

Tears of relief.  I know that’s not a complete sentence, but it feels like one.  I finished radiation treatments on April 30th.  The radiation continues to work for two weeks after the last treatment, and side effects peak at that time, so in effect, I was done two days ago.  I am completely and utterly worn out.

The radiation treatment itself was fascinating.  I’m exceedingly claustrophobic, so wearing my form-fitting mask and being bolted to the table was pretty difficult.  The radiation techs were wonderful, though, and they did everything they could to put me at ease.  I am constantly amazed at the technology available to oncologists and at the depth of knowledge and compassion demonstrated by everyone on the oncology team.  As a side note, the physicist at the cancer clinic is the dad of one of my absolute favorite former students!

My particular brand of lymphoma has a high recurrence rate, but we did everything we could.  The rest is up to God and biology.  For now, I am in remission and after eight long months, I am finished with treatment.  All I want to do is sleep.

Sometime during the summer, Terry and I are going to invite all of you to a “THANK YOU!!!!” barbeque.  You have (and continue to) make an enormous difference in our lives.  I honestly don’t think I would have survived this without you.  Because of you, I did survive, so you’re stuck with me now.  🙂  As I begin to feel better, I will become better at staying in touch.  In the meantime, I think about you and say a prayer of thanks for you every day.  L’chaim!

I managed to get back in the pool today, for the first time since I began this whole cancer adventure.  I’m at the Sheraton in Toronto, and on a cold & rainy Saturday, the pool was abuzz with a cacophany of children.  I “mind over matter”ed my way through six lengths of the pool, and was only kicked in the head once by a seven-year-old.  (There were designated lap lanes, but neither beach balls nor small boys are all that adept at respecting arbitrary boundaries. 🙂 )

I will be starting radiation therapy the week after March break.  By the way, Dr. A. rocks!!  Even though she was away on holidays, she emailed me when she heard from the lymphoma specialist at PMH.  She wanted to let me know that  a decision had been made and that she could begin my treatment after the break.  That way, I could come on this trip without worrying.  What a kind and thoughtful thing to do!

So here I am, knowing that I have another round of arduous (albeit hopefully far milder than chemo) treatment to get through. With that in mind, I am planning to thoroughly enjoy my time in Toronto.

Dinner reservations tonight were my responsibility, so we’re going to an upscale restaurant in Yorkville that specializes in CHOCOLATE.  ML, I wish you were here with us!  (They’ll do everything nut-free if you notify them ahead of time.)  Someday, my dear, you and I are going there for afternoon tea, which is supposed to be rather extraordinary.  Hmmm. . .  I think I’ll start saving my airmiles. . .

After dinner tonight, I plan to visit with all the Toronto friends who have sent me cards on a regular basis throughout the past long months.  It has been far too long since I have seen them, and they are all wildly busy.  I’m going to cherish every moment that we can steal together.

On that note, I had better go wash the chlorine from my hair sprouts and get all “dolled up”.  I’m going to wear the bracelet that LA brought me from Chile.  I’ll be having dinner with her husband tonight, but oh, how I wish she were here too.

I’m sending love and chocolate wishes to each of the amazing people in my life.  I wish I were better at telling you how much I love you. ( On that topic, Karrie, as soon as I’m done with radiation, I’m coming to school.  You have no idea how much I have missed you and that beautiful smile.)

xoxoxo!!

Long, long ago in a far distant land (okay, it was only seven months ago and a seven minute drive, but who’s counting?), I was referred to Dr. A., a radiation oncologist.  My surgeon called her about me, and my family doctor wrote her a letter.  An administrative underling at the cancer clinic (not Dr. A herself) decided that she was too busy to see me, so I was given an appointment with Dr. R, who decided against radiation therapy for me because I have lupus.

Now, however, because of the poor prognostic factors associated with my tumor (both CD43 expression and MYC trisomy 8), Dr. L referred me to Dr. A to once again discuss radiation.

I saw Dr. A today, and she seemed wonderful.  She is clearly far more experienced than Dr. R., who is very nice but also very young and new.  (He began his practice just last July.)  Dr. A believes it is reasonable to do 20 radiation treatments, in the hope that we can keep my lymphoma from recurring.  However, because she didn’t want to step on Dr. R’s toes, she called him to discuss my case.  Dr. R continues to be opposed to treating me with radiation.  Ultimately, Dr. A suggested that they defer the decision to a lymphoma specialist at Princess Margaret Hospital in Toronto.  Dr. R agreed to that solution.

So the waiting begins anew.  I have complete confidence in Dr A, and will abide by her decision.  I just hate the limbo part.  It’s always better to have a plan.  Unfortunately, both Dr. A and I are going out of town for the next little while, so nothing is going to happen quickly.  Ah well, to quote Doris Day and my friend Sandy, “whatever will be will be”.  And whatever that is, I’ll keep you posted!

Yellow tulips.

A darling friend brought me oodles of treats the other day.  Among the booty was a perfect bouquet of yellow tulips.  Have you ever tried to feel sad or down while looking at yellow tulips?  Can’t be done.  They, like the warm, sunny weather we’ve been having lately, are a happy harbinger of spring.

It turns out that this, the post-treatment period, is the time in a cancer patient’s life for depression and anxiety.  While I have had my dark moments, you, my darling friends, never let me slide very far or for very long.  You call, you email, you send cards, you bring food, you clean my house, you get me out for walks or meals, you show me your scrapbooks, you make me hats, you bring plants and flowers.  In short, you care for me and about me– in a measure far, far greater than I deserve.  You make my life beautiful and joyful, even when I am housebound, exhausted, fearful, in pain, or all of the above.  You are extraordinary and you deserve to be celebrated.  I know how busy your lives are; yet you take time out to care for me.  You are heroes — not only to me, but to everyone whose heart you touch.  Each of you goes out of your way to make the world a better place.  Do you know how amazing that is in this day and age?!  The pace of your lives is bordering on unmanageable.  People everywhere are more and more disconnected.  You ignore those factors and reach out.  You make an enormous difference in the lives of a myriad of people.  On my own behalf and on behalf of all those people, I thank you and I remind you that you are greatly loved.  Bless you.