Living Beyond Breast Cancer

Ok, Pete, finally time for another blog entry.

Philadelphia City Hall framed by dancing water

This past saturday was two years from the end of my last round of chemo.  I have been struggling over the past two years to find my path, and it has not been easy.  But saturday I made progress.  I think.  I was a speaker at Living Beyond Breast Cancer's fall conference in Philadelphia.  I spoke about access to health insurance and how to navigate the treacherous waters of hospital bills and insurance reimbursements (or lack thereof).  It was far from perfect, as I tried to cram too much material into 75 minutes, and I was unable to answer questions like "how can I afford my health insurance premiums."  But I think it was a good start.  I covered the important things that I wanted to, such as what happens if I lose my health insurance and I have a pre-existing condition such as cancer.  I really hope that continuing on this path will help me figure out my life beyond breast cancer.

The last few months have been trying to adapt to my new CPAP (technically it is a "BI-PAP," delivering higher pressure on my inhales and lower pressure on my exhales).  It has not been easy, and I have not yet become one with the machine.  But "baby steps," as I have been told by a wise friend.

Ending my at-long-last-another-blog-entry with good news.  I had a mammogram today and although the technician didn't think she got a good enough image because my arm was stuck due to my frozen shoulder, the radiologist nonetheless found it sufficient and I was told "no suspicious findings."  I was surprised at how terrifying it was; it somehow seemed more scary than the one I had a year ago.  Since my mood has not been great, please celebrate for me and I'll get there soon.

Trying to breathe

I have chronic congestion which interferes with my sleep.  ENT docs over the years have said nasal sprays can help, some have said surgery would help because the problem is a severely deviated septum, not allergies.  Some have said surgery MIGHT help.

Add to that really chronic fatigue over the last six months or so.  I mean, to the point where I feel like I cannot keep my eyes open at work in the afternoons.  So, my docs sent me to have a sleep study.

The long and short of it is, i have now been diagnosed with sleep apnea.  My rate of apneas plus hypopneas (total, and partial closing of the airway) was 12 per hour when on my side, 57 per hour when on my back, with an average of 18 per hour.   According to my sleep doctor, 5-15 = mild sleep apnea, 15-30 = moderate, and above 30 = severe.  In addition, my oxygen levels dropped below 90% and were down to 87% during the small amount of REM sleep that I eked out during the study.

So.  I met with another ENT (I have been having a heck of a time finding an ENT I like, but I think I finally found one).  She recommended surgery to correct the deviated septum because the CT showed very little passageway for air to travel through.  She said a CPAP would not do much good if there was nowhere for the air to go.

And the sleep doctor recommended a CPAP (yes, Pete, CPAP IS the new prozac!).  She said "cleaning up my nose" with surgery could likely not treat the apnea.  So, just when I thought I could stop spending hours each week in doctors visits, well, it turns I have to continue spending hours each week in doctors visits.  Apparently I was having delusions of having some sort of "back to normal" life.

Ok.  Trying to see the positive.  Although it doesn't feel like it at the moment (i am having a pity party) better to have the problem diagnosed than not.  And maybe it is good to have an explanation for why I am so friggin tired all the time.  And maybe it can be corrected.  But to get there I have to face some of my scariest demons, going back into surgery, having general anesthesia again, having to wear a mask that forces air into my nose, spending several days in recovery from surgery with packing up my nose which, according to the ENT, will make me feel like it's difficult to swallow.  These are issues that I don't do well with.  Oops, not doing a very good job about focusing on the positive.  

On the bright side, unless Congress screws it up, at least I can't be denied health insurance for all my pre-existing conditions, beginning in 2014.  That's something.

If you don't get it, you don't get it.

That's the washington post advertising mantra.  It is also how I have been feeling over the past month or so about my depression.  Physically have been doing pretty well.   Had a follow-up appointment earlier in the month with my new-ish oncologist, Dr. Kaltman.  Really like her a lot.  I told her how I worry about every bump, scratch, pain, and so on, and she tried to put my mind at ease.  Still tired a lot, but I think that is due in large part to not getting enough/good sleep.  Am actually having a sleep study next week to rule out sleep apnea.  And have met with an allergist/ENT to see if we can make some headway in solving the problem of my horrible night-time congestion.

But have been battling my old demon of depression and it's hard to explain to someone who has never experienced it how it feels.  It comes in waves, and have been relatively successful in heading it off with running, hiking, yoga, activities with friends, etc.  But not at work and not when sitting with unscheduled time.  That's a big part of why I haven't blogged lately.  Plus, not much to report on the treatment front, other than my constant worries, and my hot flashes from the tamoxifen.  I don't normally tell a lot of people about the depression, so it feels a little weird blogging about it, but at this point, I'm past the point of caring whether someone might judge me or view me weirdly for it.  It is what is is.  But the work stuff I will leave to individual conversations.

Not all is doom and gloom though.  I had a fun time at a photography workshop in Charleston, SC last month.  Still haven't gotten around to posting pictures but will eventually do so.  And I am off for Ottawa today (very proud of myself - got to the airport sufficiently early!).

And had a great race the other weekend:  Race for Hope.  The money raised went to support brain tumor research.  It was a 5K race in downtown DC, and started at 9 a.m. on a sunday morning (which is pretty late for races, which I really appreciated!)  I ran with my friend Janel, whose father just had surgery the other day for a brain tumor and is been having a tough, slow recovery.  Well, that is, I signed up with my friend; we each ran at our own pace - she's much faster than me!  The survivors all made their way to the start carrying yellow balloons, and then released them to the sky which was very moving, if not environmentally ideal.  I was determined first to beat my time of 39 minutes and some odd seconds from my three 5Ks last year.  And next, I wanted to beat the goal of 39 minutes.  I ran most of the race, stopping three times for water breaks.  And I finished in 37 minutes, 2 seconds!  Very pleased with that.  It felt good.

Signing off now.

I did it!

My results!

Finally started feeling somewhat better friday night before the race.  Sunday decided to run a little, and it felt ok, so ran/walked with my training buddies for the first 5K.  After that, walked for a while, with a little running every mile or so.  Walked the last 8 miles or so with another Cancer to 5K friend who just began a new chemo trial.  Whenever we had enough energy, we'd run for a few minutes.  Otherwise, we walked, walked and walked.   Ran across the finish line!

Changing expectations

Well, if you've been following my blog or talking to me in the last three months, you know that I have been training for a half marathon to celebrate getting two years past diagnosis day.  And my birthday.  Unfortunately, I have been sick for the last 8 days, and am not "all better" yet.  Still have congestion (not a big deal), chest congestion and some coughing (more of a big deal for running), and am pretty weak and tired since I haven't eaten much other than tea and emergen-c and cold-eze for the last week.  Some chicken soup in there too.

I have gotten all kinds advice including do the race anyway, stay home in bed, show up & start the race and see how I feel, & walk instead of run.

I had my pity party yesterday and discovered that crying only made the congestion worse.

So.  While it sucks and I'm still bumming that I won't be at my best for tomorrow, I still had the amazing experience of the past three months of training.

What is my plan?  I think I am going to try to walk the whole thing.  Maybe I'll run a mile at the beginning.  We'll see.  But I don't want my unmet expectations to diminish at all the fact that I am still celebrating two years away from diagnosis day.  So, I will just have to change my expectations.  Possibly on a moment to moment basis.  While I know part of me is disappointed, frustrated and thinks this sucks, I want the other part of me to be able to enjoy tomorrow, regardless of how fast and far I go.

Will just have to wait and see how it goes tomorrow....

flying through time: two years

It is hard to believe, but two years ago today was my d-day, my diagnosis day, my day of being told "you have cancer."  It's crazy how fast time has gone since then.  Somehow, I managed to get through the first 24 hours, which may have been the hardest.   I certainly don't want to get cancer again, but I will say my life is richer now than it was before.

Little to report at this moment.  Mostly have spent the last 24 hours coughing.  I was convinced I had bronchitis but turns out it may be just allergies.  Plan to lay low and take it easy this weekend, trying to be healthy for my half marathon next saturday.  Now off to sleep.

Leaping

Yep, it's leap day of a leap year.  Nothing new to report medically.  I just wanted to write because February 29 only comes around every four years.  Thinking of leap frogging (passing and being passed by Cancer to 5K team members at survivor harbor last June), leaps of faith and of course, my leaping lily, below.  

I cannot believe that two years ago I was just about to have my biopsy.  Or maybe I'd already had it, I can't even remember the exact date.  More reminiscing about two years ago in the coming weeks.  For now, suffice it to say that I had no idea that I would be able to get through all that I have, but I did.  Or at least, I have so far.  Leaps of faith for whatever's next.