Meeting with Head/Neck Surgeon

Our consultation with the head/neck surgeon (Dr. Howard) went well this morning. He does believe that the submandibular mass is operable. There is some risk to nerves and vessels in the neck, but it is still a viable option for us.

We are putting this issue "on hold" pending our consultation with the neurosurgeon at Vanderbilt on Wednesday. We'll be traveling to Nashville tomorrow evening.

Prayers are appreciated!

:-) Sharon

The Joy of Legs

I find myself moving my legs a lot these days. It is part paranoia, of course, to see if they're still working. But it also just for the sheer joy of movement. I like to wiggle my toes and pump my ankles. I like to bend my knees and squeeze my thighs together. I like to stretch my calves and flex my toes. These are things that may seem ridiculously basic to a healthy person, but I just can't imagine losing the ability to do these things AGAIN and maybe forever this time.

I have struggled so much for the past two or three years with my mobility (first the terrible, undiagnosable leg pain, followed the shattered femur, then the first round of spinal tumors and the six months of temporary paralysis, then the "your femur bone and hip are gone" news that necessitated my last surgery in April). When I was finally able to swim again this summer, I was struck by the beauty of the effortless motion of my own body, especially in water. The feeling of moving -- FREELY -- was absolutely amazing. For as long as I live, I will treasure the memory of those brief, happy evenings at the pool this summer.

BTW, the neurosurgeon who did my previous spinal surgery says that this one is too complex for him (if it's possible at all). So -- we are off to Vanderbilt again, to see the head of the neurosurgery department there on Wednesday, August 1st, at 8 a.m.

Sigh ...

Sharon

Suspicions Confirmed ...

Dr. M called me at 9 a.m. this morning. It's not usually good news when the doctor himself calls you, and it is certainly not a good omen when he calls you first thing in the morning, before he begins his daily appointment schedule.

The cancer is back in my spine. This time, instead of an extradural tumor (sitting on the outer part of the spinal cord), it appears to be an intravertebral tumor (inside the bone). It has already shattered the bone in that area, and that's probably the source of my recent terrible pain.

What does this mean? In the short term, it means no more PT and no "excessive" or "forceful" physical activity. Beyond that, the possibilities range from excruciating pain to total paralysis from the point of the tumor (thoracic spine). Dr. M asked me if I have any decreased strength in my lower limbs, but so far, my feeling / strength is fine.

Radiation is out, and chemo does not generally work on spinal metastases (cannot cross the "cord barrier"), so we have to determine is surgery is an option. I will be seeing seeing the surgeon who did my previous spinal surgery (3/06) as soon as the appointment can be arranged.

I'm at a loss for words right now. Please pray with us and for us.

Sharon

Et Tu, Summer?

Heavy sigh ...

I am sad to report that my back has been hurting so badly that even my beloved pool lends no relief. The last time I went down there (Tuesday evening), the pain was so intense that every wave of water felt like someone was throwing bricks at my back. I stayed in for about thirty minutes, then retreated to the van for a good, long cry.

I should back up and tell the whole story. Last week, I scaled down my pool visits (3 times last week instead of every night) because my back was hurting off and on in the exact spot of my previous spinal tumor / surgery. Coincidentally, I was not able to do PT either day last week (therapist was sick, then I had appt. with Dr. M). By Saturday, my back was really stiff and hurting, especially at night, but I was hoping that it was because I hadn't moved around as much as usual.

I became concerned on Sunday evening, when I could no longer lie flat on my back due to the pain. This, you may remember, was one of the MAIN symptoms of my original spinal tumor. Also, the pain is worse at night and is not related to my activity level. This, too, is a symptom of a spinal tumor.

My concern turned to terror after my disastrous trip to the pool Tuesday evening. If I am suffering from simple back strain, wouldn't the water relieve the pain instead of intensifying it?

I called Dr. M's office (to tell them about the hospital mixup that required rescheduling of my CT scans for tomorrow) and asked if I need additional tests for the spinal pain. They scheduled me for an MRI at 11 a.m. today. No results yet.

Dr. M was the one who did my recent lung radiation treatments, and one of the scariest potential side effects is radiation-induced spinal cord damage. MRI / CT would not reveal this kind of damage. It is basically diagnosed if no other source of the problems can be found.

Please pray with me that this turns out to be nothing more sinister than my own overreaction.

Thanks,

Sharon

Welcome to Our World ...

I'd like to introduce you to the latest member of our family, my new little niece. Elaina Grace (Ellie) was born this morning about 10 a.m. Both she and my sister Amy and doing great.



She is joined in the photo by Mom (Grandma!) and Autumn.

Welcome to our world, Sweetie. Please try not to grow up too soon!

Health Updates

Well, the CT scans scheduled for first thing this morning didn't happen. Apparently, the doctor's office failed to indicate a diagnosis on the order when it was faxed to the hospital. No one was available at the doctor's office (at 7 a.m.) to correct the error. We waited until 9 a.m., and then re-scheduled for Friday, 7/20 at 10:45 a.m. Sigh ...

Here's the current schedule of upcoming appointments:

7/19 - MRI of Spine (Gory details to follow in another post).

7/20 - CT scans of head, neck, abdomen, and pelvis.

7/30 - Appt. with head/neck surgeon to determine if surgical excision of the sub-mandibular gland is possible.

Shortly after 7/30 - Appt. with rad. onc. to schedule radiation if surgery is not possible.

7/31 - Appt. with new hematologist (Dr. H2) to manage coumadin levels. (Dr. D was my oncologist AND hematologist. Now that he is gone, I need a hematologist.)

8/3 - Appt. with new oncologist (Dr. I).

8/7 - Return trip to Nashville to see surgeon (Dr. H) for followup on my NIL (new, improved leg).

Whew! Making this list is wearing me out! Of course, all of this intersects with our back-to-school schedule (freshman orientation on 7/26, registration on 8/9, and 1st full day on 8/13) AND physical therapy AND regular life, so I am going to be busy!

I'll just have to "escape" to the pool as often as possible to unwind and relax ... yeah, that sounds like a great idea right now!

Hoping you're relaxing, too!

:-) Sharon

Places in the Heart (and Mind) ...

Do you have places in your heart/mind where you go to escape when life is just too hard?

My main one this summer is the pool, of course. I imagine myself in the cool blue water, swimming and rolling and playing without a hint of disability. It is this feeling that calls me there day after day, even when my muscles are screaming for a break.

The pool is not the only "happy place" that I pull up in my mind when I need relief. There are other good memories, too. Some of my favorites:

• The days of my youth. I loved my childhood, with the long, lazy summer days spent in the yard reading or running or playing.
• 1985, the year I graduated from high school and entered those wonderful early days of college life.
• 1991, the year that Don and I met, dated, and married.
• The years when the children were younger and we traveled and took vacations and played together in the yard and turned every day into a new adventure.
• Every day of my life when I could walk.

Sometimes it's comforting to replay the scenes in my mind. Tonight, the pain is almost too much to bear. It swallows me in its savage wave of sorrow. It feels like all of the simple days are gone, and only the hard things are left. I wish I could rewind my life and live it all again, savoring the beautifully simple days that are now gone forever.

I'll be okay, of course. I just need to find the mental and physical energy to move past this latest life crisis. Prayers and happy thoughts are always appreciated.

:-) Sharon

Be There to Hear It ...

I was thinking today about my favorite poem, one that I discovered as a teenager but understand (like all things) much better now. When the kids were young, I often quoted the second verse to them when we traveled. (Yes, I quoted poetry to them when we were on the road. "Captive audience", huh? I guess it's no wonder that they hide under CD players now, if they go anywhere with us at all.)

I hadn't thought about it in a long time, and it's amazing how much more pertinent to my life it now seems.


Wait
by Galway Kinnell

Wait, for now.
Distrust everything, if you have to.
But trust the hours. Haven't they
carried you everywhere, up to now?
Personal events will become interesting again.
Hair will become interesting.
Pain will become interesting.
Buds that open out of season will become lovely again.
Second-hand gloves will become lovely again,
their memories are what give them
the need for other hands. And the desolation
of lovers is the same: that enormous emptiness
carved out of such tiny beings as we are
asks to be filled; the need
for the new love is faithfulness to the old.

Wait.
Don't go too early.
You're tired. But everyone's tired.
But no one is tired enough.
Only wait a while and listen.
Music of hair,
Music of pain,
music of looms weaving all our loves again.
Be there to hear it, it will be the only time,
most of all to hear,
the flute of your whole existence,
rehearsed by the sorrows, play itself into total exhaustion.

------------------------

Profound, isn't it? I have always loved it, but "music of hair" and "music of pain" are much more coherent concepts to me now. And "be there to hear it" would make a great motto for my life.

It's EXACTLY why I keep fighting so hard.

Medical Updates:

- My local oncologist is gone and I'm not scheduled to see my new one until August.

- My radiation doctor (who needs to do followups to see if the recent lung radiation treatments were successful) is out of town due to a death in the family.

- My home health services have been discontinued due to my improving health.

- Through the swimming and the pt and the daily exercises, my NIL is gaining strength so quickly that I feel much like a baby -- gaining new skills and making new steps every day. Here are some examples:

1. I can FINALLY get out of the pool with the cane without a giant ordeal now.
2. I am able to walk a dozen or more steps -- albeit still ugly ones -- on the cane now.
3. I am driving again and can pull my own leg in and out of the van on either side now.
4. Last night, I raised my NIL straight up off of the bed for the first time in more than 2 years.

Thanks for caring!