Three Months

Three months into my cancer diagnosis, I’m looking out the window watching the snowflakes ebb and flow in the fall air.  The Minnesota weather is chilly, the wind blustery in the trees, squirrels scurrying about awaiting the coming of winter.  This gloomy day (not the snow of course, I love snow any time of year) is far from reflective of how I am feeling these days.  Life has been good.

At my appointment with my oncologist this week, we received remarkable news.  As we reviewed the results of my PET/CT Scan to find a decrease, yes I said decrease, of cancerous activity in my body I was amazed.  The news began to slowly, but surely seep into my being… “Grossly decreased size of lymph nodes in the left axilla and left supraclavicular/retroclavicular region…” and, “Decreased areas…within the proximal left humerus, distal clavicle, acromion process, and along the scapular spine ranging from 3.3 in the medial margin of the scapular spine to 4.8 in the humeral head. These sites previously demonstrated (levels) up to 8.2 (corresponding to the humeral head). Significant decrease in (levels) associated with the medial left clavicle with maximal (levels) 2.4, previously 7.5.”  Incredible news.  As a realist, I imagine that these levels can fluctuate, though I have no intention of dismissing this report as anything other than encouraging.

While I have received no formal, medical treatment for my cancer, I have been diligent in allowing my body the space to heal.  Yoga, meditation, healthy eating, reducing stress, and allowing others to cheer and support my journey.  I believe in prayer, my own (which takes on many different forms) and those of others who have taken up the battle alongside me.

“Keep doing what you’re doing,” a good friend commented.  I believe that this sentiment holds much merit.  It is tempting when things are going well to become less aggressive in the battle, but now is not the time for apathy.  It is the time to do good; to research new developments in treatment, to support others in their cancer diagnoses, and to continue to allow space for my body to heal and become stronger.

In three months, I will return to my oncologist.  THREE MONTHS!  I am grateful for this reprieve, as we had planned on monthly monitoring and visits for six months.  Until then, I will continue my ritual of eating red grapes and drinking green tea daily.

Life is good.

This is Life

I am wondering if I will ever get used to the idea of having an oncologist.  At my appointments, I continually feel out-of-place with cancer fighters at least twice my age in the waiting room.  I’m certain that people are looking at me wondering, “Why is she here?”  The only real mention of my age by my oncologist was at the time of diagnosis, a quick acknowledgement that I was young and healthy and probably hadn’t expected this…cancer.  Well, of course not.  It doesn’t take an oncologist to figure that one out.

The thing is, I am on this journey whether I like it or not.  Period.  Now, what I do with that journey is up to me.  Period.  While it’s not in my nature to “sit around doing nothing”, I have attempted to do just this on a daily basis in order to quiet my mind.  Meditation, yoga, both wonderful ways to bring a little peace and calm to the storm.  I was told by one of the social workers at the U that any time, even a minute or two, spent thinking of something other than cancer, “gives your body time to heal”.  This resonates with my being and gives me a personal freedom to procrastinate on researching the latest and greatest cancer treatments (which generally don’t pertain to me anyway) and just take time to enjoy my life.

In another month, I will have a second PET/CT Scan to determine how my cancer is progressing.  Until then, my team will continue with “active surveillance” and I will continue to figure out how to live a full life with this disease.  My blood counts were wonderful this week and I feel healthy – no pain, no symptoms.

I’ve spent some time reading information on eating foods that promote cancer prevention (which basically means plant-based, vegan diets), though I am not inclined to believe that this will improve my prognosis in the long-term and might just make me really crabby in the short-term, it is something that I feel I should consider.  Of course, only time will tell how many changes will seem prudent throughout this journey.  I intend to remain open to new ideas and the probability that I will change my mind many times along the way.  This is life after all.

Open to Life

Our morning began earlier than normal today, 4:15 am.  It is very dark at that time of day.  With quiet efficiency we dressed, gathered my medical records, and were out the door before 5 am…still very dark.

As we headed south, I could feel the nerves building a fire in my gut.  The anticipation of hearing another medical professional declare that cancer had invaded my body, had me feeling on-edge and I prepared for a torrential down-pour of emotions.  The darkness was calm and I encouraged myself to feel the same – calm.

The unexpected happens when we are least aware of it’s possibility, going about our own business and living life.  It’s in these moments that we are our true selves.  A little afraid, a little funny, and (if we are lucky) maybe even a little self-assured.  I didn’t expect to feel relief today, but I did.  I didn’t expect to feel hope today, but I did.  I didn’t expect to feel gratitude, but I did.

Relief:  The oncologist/hematologist that we saw today at the Mayo Clinic was thoughtful, intelligent, patient, and confirmed that I had experienced state-of-the-art care at the University of Minnesota’s Masonic Cancer Center.  He concurred with my initial oncologist’s plan for “active surveillance”.

Hope:  He informed us that in some cases people with follicular lymphoma (in its slow-growing state) don’t require aggressive treatment until many years after diagnosis – 5, 10, maybe even 15 years.  In addition, he stated that some people will experience an immune system surge that will send them into a “natural remission”. 

Gratitude:  I was told to eat red grapes and drink green tea.  (I love this!)  While saying that he does not have clinical proof of the benefits of this simple task he does have anecdotal evidence that it can slow the growth of cancer cells even further and has been linked to natural remissions.  I was grateful to learn of his openness to these non-medical options, as it gives me something active to do as we take the wait and see approach to my treatment.

At the end of the day, I sit here exhausted and thankful that the emotional roller-coaster has evened-out for the moment.  Although he is having Mayo Clinic radiologists and pathologists review my test results this week before confirming a diagnosis, prognosis, and treatment plan, I remain optimistic.

Tomorrow is another day.  A day that I will spend with teenagers!!  (I must get to bed!)

First Days

The first days back to school are always hard – ask any teacher.  To-do lists are millions of items in length and meetings are scheduled from start to finish for what seems to be days.  It can be overwhelming for the most veteran of teachers.

You might imagine that the most common question to start the school year is, “How was your summer?”  To which most people politely respond, “Great, I can’t believe that it is already over…” (or something to that effect).

This year, I have uttered those words, too, in the effort to avoid the anxiety that accompanies telling someone that I have spent my time this summer in many doctors’ offices and have been diagnosed with cancer.  It’s hard to know how people will react…shock, tears, painful disbelief.  It turns out that it is hard to re-live the moments of my initial diagnosis over and over again (shocker), the other person crying as I hold them, consoling them and reassuring them that everything will be ok.  I don’t have the energy for that (cancer or no cancer)!

So after careful discernment, I have made the decision to send an email directing people to this blog link.  I have given up feeling bad about this and don’t believe in setting some crazy self-expectation that I tell people in person; the emotional cost does not out-weigh the benefit.  Hopefully, everyone will understand my need to keep things simple.

I enjoy hearing from all of you and deeply value the support that you are so generously giving to me, Brett, and Harper.  We feel the love and it is overwhelming in the most real and beautiful way.

Oh, and one more thing, cancer will not consume my life.  I need to think about and talk about things other than my lymphoma.  As my oncologist said, “Life doesn’t stop for cancer.”  I need to keep on living!

You need to know that I am strong (I am hoping that you all know this already) and I will be stronger with others to support me, encourage me, be flexible and patient with me as I walk this path I had never intended to travel.

Oh, and one more thing…please feel free to share this blog with others; my intent is not to keep my diagnosis a secret I just don’t have the time to get to everyone on a personal level and want to be as open as possible about the life challenges that may lie ahead of me.

For information on my initial diagnosis read, “Long Day”.

Long Day

Hello All,

Today was our appointment at the U with my oncologist/hematologist.  Although we are very pleased with our care, we received information about my lymphoma that was hard to hear and somewhat confusing.

It is confirmed that I have stage IV, b-cell non-hodgkins follicular lymphoma, grade 1, which is a slow-growing cancer.  However, there are more areas of my system that have been affected, including other lymph node sites and also my bones in at least two separate areas.  We had hoped for better news than this, of course, and find it puzzling that my exercised and organically-fed body could really be infested with cancer cells.  (I saw them on the scans with my own eyes…they’re there.)

Due to the fact that this type of lymphoma is slow-growing, I am young, asymptomatic at this time, have good blood cell counts, and feel great despite these foreign invaders, my oncologist/hematologist is recommending a “wait and see” (with very close monitoring) approach to treatment.  This would allow us more time to observe how the cancer cells are operating and multiplying and make more informed decisions about my treatment.  The only factor that is considerably worrisome (besides the fact that cancer is nasty) is that it has invaded my bones…which is how you get to the “stage IV” label.

If you should have the evil-urge to search for information on the internet, we were given these sites by my oncologist/hematologist as credible and good resources (but don’t go too crazy here):
National Cancer Institute
National Comprehensive Cancer Network
Leukemia & Lymphoma Society

The other treatment option is chemotherapy.  Which is available to me if I just want to get it out of my system.  However, there is no cure for this type of lymphoma, there is only treatment and (hopefully) long periods of remission.  It is probable that I will need more rounds of chemotherapy in the future and quite possible that I would need bone marrow transplant/s, as well.

So, next step for me is a second opinion for the sake of comparison and maybe a little piece of mind that we are making a sound decision based on what medicine is telling us at this point.  I am scheduled at the Mayo Clinic the first week of September to review all of my test results.

I am so thankful that I live in a state where I have easy access to great medical care and treatment.  No matter what the treatment plan is for the near future, I plan to kick this cancer’s ass as many times as I need to in order to live a long, fulfilling, and healthy life.  I appreciate all of your prayers, emails, phone calls, texts, and cards.  Feel free to keep them coming, though I may not be able to get back to you right away.

Please keep Brett is your prayers as well… he is taking a lot of the burden right now and I am lucky to have him in my life. He will need to be strong to get through this, too.  Harper is a pure delight – I am enjoying every moment with her.  I just pray that her resilience will save her from stressful times and keep her in happy-kid-mode.

My focus now is to reduce stress, increase the strength of my immune system, practice self-care, and enjoy life with intention!

Thank you again for all of your love and support…

With Gratitude & Love,
Heather