Life After Brain Surgery

**MOST RECENT UPDATE: 10-Mar-2010**

This page is temporarily posted to provide access to those seeking to catch up on the status reports on my wife’s sudden — and unexpected — Brain Surgery on Christmas Eve, 2009, after doctor discovered a tumor on 12-15.  Posts are in Chronological order from the top — beginning with the day of surgery.  TO READ THE MOST RECENT UPDATE, SCROLL ALL THE WAY TO THE BOTTOM.

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12-15-2009

Tumor Discovered, Life Shifts

We arrived at Cleveland Clinic’s Strongsville campus for a routine MRI to study Cheryl’s optic nerve.  We’re not expecting anything of concern — I’m only there because MRIs make Cheryl nervous (all that banging!).

Situation: Something’s been affecting peripheral vision in her right eye for the past two years, and she occasionally get what she calls ‘flashing’ in the lower corner of eye.  Has gotten to point of ‘this is too annoying’ and her optometrist referred her to an ophthalmologist (eye surgeon) further investigation.  Dr Kosmorsky could find nothing on preliminary exam, so scheduled the MRI to study her eye socket.

The Moment: We greet Dr K about 30 minutes after the MRI is complete.   He enters the room with a huge envelope of films, and says, “well, now we know what’s causing your vision issues:  you have a brain tumor.”  Just like that, the world shifts.

He starts to explain about the prognosis for this type of tumor, and that he’s referring Cheryl to two doctors at the Taussig Cancer Institute at the main Cleveland Clinic campus.  He pops one or two of the films up on the board to show us.  The tumor looks absolutely GINORMOUS!  (later, it turns out my first reaction was accurate — the tumor was, in fact, huge and flat and covering a good third of the back of her brain)

Shock and Information: Dr Kosmorsky sets up the next doctors appts for us immediately, and he lets me take home the films so we can study them for the next few days (and let our daughter, Dr Kelly, take a look at them as well).

Here’s a direct quote from the MRI report.  Over the next few days, I would become intimately familiar w/ this sentence, and become obssessed with understanding what it meant:

“IMPRESSION: Massive posterior parietal occipital menigioma with extensive invasion of the superior sagittal sinus with local obstruction, mass effect ventricular system.”

Translation:  first of all, we learned that TUMOR does NOT equal cancer.  This helped a lot.  See hyerlink above for more info on meningioma.  Massive: the main tumor was 5.5 X 6.5 X 5.2 centimeters in size, laying on the left upper rear of her brain, pressing on the occipital lobe (which controls vision).  In addition, it had grown a ‘finger’ forward along the sinus, or empty space, between the two lobes of her brain, and that finger extended another 7.5 cm.  Take out a ruler and check out those dimensions.  It was SCARY big. But it had grown so slowly, probably over 15-20 years, that her brain had adapted.  But now, it was done.  Bruising showed on the brain itself, and that’s what was causing the problems.  Finally the “obstruction” referred to the fact that the tumor had slowly invaded one of the main blood vessels in her brain, and this was of concern.

When we met a few days later with the Neurologist (Dr Stevens) and the Neuro Surgeon (Dr Barnett), Cheryl opted for immediate surgery.  It happened that Dr Barnett had an opening on 12-24, Christmas Eve.  So it started.

What follows are the email updates I put out to friends and family over the next few days and weeks.

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12-24-2009, 6:32PM (via email)

Tumor Update: Tumor is DOA, Cheryl’s happy and came thru great.

Here’s a detailed report, going out to all who requested.

Details from Doctor Barnett:

• Got out 99% of the tumor, which exceeded his expectations. Dr Barnett is one of the best neurosurgeons in the world, so this is really great news.
• She lost blood during the procedure, and had to receive two units of blood.  It makes me happy to know others gave blood for her sake (makes my 9 lifetime gallons worth it!)
• Dr Barnett was concerned that the tumor had compromised two of the major veins that feed blood back to heart.  One was totally OK, and while he had to remove part of the other, the tumor had grown so slowly that her system had developed alternate paths (collateral circulation) so there was no need to patch anything.  Again, great news, and better than the doc expected.
• They will be doing hourly neurological checks all nite, so her sleep will be spotty, but everyone seems very happy w/ her progress.  She’s awake, fully “there,” just very sleepy.

We visited Cheryl in Neuro ICU, and then they chased us out.  I will return in AM, will see doctor late AM Friday for next consult (he’s on call all weekend, so will be seeing her daily).

I am SO grateful for all your prayers, positive energy, and concern.

I am now heading to Christmas Eve mass to celebrate the holiday and give thanks for everything going as planned.

En la felicidad/In happiness, J

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12-26-2009, 6:33PM  (via email)

Tumor Update, Day 3: MRI results, sleep, visitation, and comfort food

Hi, all,  to those of you who’ve texted/emailed/called….sorry no update yesterday.  I knew very little news till got results of 2nd post-operative MRI just an hour ago.  Plus, it was Christmas, and in between a few visits to the Clinic, we were sorta kinda having a modified holiday, went to a movie Cheryl doesn’t want to see anyhow, etc.  Stuff.

Oh, here’s a tip for if you ever have someone in the clinic on Christmas day: most of the doors are locked, so the best way to get in is to stalk an employee who has a badge to open doors!

Here’s situation, in no particular order:

• Cheryl’s color is getting better each day.  Last nite she got out of bed and sat in chair for awhile, took in a bit of semi-solid food.  No dizziness. So today they removed her catheter… and she took a bit of a walk.  She felt solid, no dizziness. This is very good.
• Her vision is still compromised, but improving. Immediately after surgery she was unable to focus.  Friday she had clear vision in each eye separately, but when opened both, she had blurriness (like the brain hasn’t yet synced up the two eyes).  Today, Sat, I was thrilled when she looked at me w/ both eyes open at same time — she now describes as a little fuzzy, like first vision in morning.  Docs say vision clarity appears fine, and expect the fuzziness to be temporary.  The minor peripheral vision loss that led to discovery of the tumor is still a problem, but that may never come back (and is minor enough that Cheryl says could live with it — after all, has lived w/ it past two years already!)
• First MRI (Friday) showed bleeding and a small clot in the brain, at site of the vein that was affected by the tumor.  So doc sent for second MRI today, got results from him late in day.  Small clot remains,, but has not grown.  Usual management is thru blood thinners, but since she’s already bleeding in brain, can’t do that.  So will keep her in the Neuro Stepdown unit where can manage thru blood pressure and fluids.  Good news is her BP is low anyhow (e.g. 103/60).  Bad news is she won’t be in a regular room for another day… and this will delay her release from hospital.  Will likely go for third MRI Sunday.
• One of Cheryl’s favorite comfort foods when she’s not feeling well is rice baby cereal.  I made a bowl of it last nite and that was her first solid food since Wed.  Took more today, and eating it helps her feel better.  Hopefully she’ll be up to more solid stuff tomorrow, but we’ll be happy with this for now.
• They took the bandage off her incision. When her dad visited today, he remarked “you’d never believe she just had brain surgery.”  The incision is about 6″ down back of her head, and healing beautifully.  The shaved area is only 1/3″ wide. Truly, once her hair is back to her usual style, you will see nothing.  I find this amazing.

RE: visitors.  Frankly, she has little memory of visits, so please do not do anything for her benefit.  She only has energy for short visits.  If YOU need to see her, please give me a call first.  For example, her dad really NEEDED to see her for his sake, as did her friend Susi (who just had tumor surgery, same docs & hospital, 2 mos ago). What she most craves is sleep, not company — she generally chases me away after 10 minutes (which I do not take personally!).  Doc warned that 8 hrs of general anesthesia can take up to 10 days to wear off, and with Cheryl it may be longer.  So sleep is her greatest tool for healing.

Remember the main reason they send people home from hospitals as quickly as possible is that hospitals are full of germs. If you have any to share, don’t even think about it.  Truly.

Finally, please DO NOT send anything to her — plants, flowers, cards.  NOT!  She cannot have anything in the neuro units.  If you want to send a card, etc, send to home address, and I’ll take to show her or save for her return home in a few days, when she’ll more likely remember it anyway.

I’ll be picking up Justin tomorrow in Pittsburgh so he and Katie can come to see her on Sunday evening.  Please let it not snow while we’re on the road!

Thank you for all your prayers and best wishes…. and don’t stop yet!  Until that clot is absorbed, she’s still under close watch.

In happiness and optimism, J

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Tue 12-29-2009, 12:20AM(via email)

Tumor Update, Day 5: clot dissolved, homecoming, the long healing begins

Many of you wrote/texted or left me vmail today, asking how Cheryl’s doing.  thank you for your continued concern.

News continues to be mixed, with an overall positive trend.

• Cheryl had a CAT scan yesterday AM to monitor the blood clot on the top of her brain.  The clot showed as dissolving, so her surgeon moved Cheryl to a regular room on the neuro floor.  Yesterday passed uneventfully.
• Jim and Jared attended the Smith Family Christmas in Pittsburg, where they were joined by Justin and Katie (who finally got to meet the entire Smith family!).  Kelly and Paul stayed with Cheryl.  Upon our return to Cleveland in the evening we had a little immediate family Christmas – Kelly and Paul had brought down a portion of our gifts, which we unwrapped in her room.  We took a family photo and let her go to sleep.
• Today, she woke up with a horrific headache, which waxed and waned all day.  Tylenol seems to take care of it, but we have a bottle of heavy-duty painkiller if she needs it.
• Her doctor signed orders for her to go home, but first she needed to have some tests in Opthalmology. Took 3.5 hours, and she returned w/ killer headache and exhausted (longest time sitting up prior was 45 mins!).  Zonked out after snack and Tylenol.
• She’s got vision clarity back in the center of her range, but still issues with peripheral (try looking straight ahead at an object.  Notice that even tho you’re looking straight ahead, you can still see things on either side, up and down, right?  She can’t see anything to her left or below her nose, so is missing half her peripheral vision right now.  The absence of peripheral vision means she’s effectively blind to one side and down when walking straight ahead, so she’s feeling disoriented and has walked into a couple pieces of furniture (which is all my fault, of course <grin>).
  Seriously, since she has been improving daily, nothing’s to be done right now except I am being mean and making her open both eyes and look at me when she’s speaking — gotta retrain those neural connections!
• So we got her home at 8:45, had a late dinner.  After we picked up all her prescriptions, Kelly and I laid out the next 12 days of medication, which gets complicated because one of them is a steroid which is taken in declining doses over the next 10 days.  Please don’t let anyone drop the pill case!
• Now we settle in for the longer term healing.  On Tuesday’s agenda — more walking, eyeball exercises, and she finally gets to shower and wash her hair for first time since last Wed.  Ah, the joy of life’s simple pleasures!
• Next up:  Cheryl is really looking forward to getting her staples out on Jan 4th.  Yes, they are really staples holding her head together!  Kelly says we could literally use an staple remover from my office… but I think I’ll leave that to the the surgical nurse next week…  Also, the clinic will send out an Occupational Therapist to assess Cheryl/vision in the home, then design some exercises to help her strengthen and expand her eyesight.

After the headache, the eyesight issues, and the ‘loss’ of two days she remembers nothing about, I asked Cheryl if she has any regrets.  Nope.  She’s still very happy she did it right away.  (in case you were wondering).

P.S.  I’ve turned down the ringer on the house phone.  So if you call and it rolls to voicemail, just leave a message, or call my mobile.  (I’ve hidden her mobile for a few days.  Until she can see the screen to dial her own calls!)

Happy New Year, all!

In Happiness, J

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Thu 12-31-2009, 12:26PM (via email)

Tumor Update, Day 7: Embracing narcotics, napping…and a Tumor-Free NY Eve

Perspective: One week ago today Cheryl was lying face down in an OR at the Clinic with a big chunk of her skull opened up while a neurosurgeon used high-end robotics to poke around inside her head and remove stuff.

I mention this because last nite, as Cheryl was still struggling to resist the shift to Percocet, Doctor Kelly showed up and reminded her of the reality.  “Mom,” she said, “they cut into your skull with a SAW.  Of course it’s going to hurt!  When I do a C-section on a patient, I usually prescribe 40 Percocet.  Your doctor gave you 100 tablets.  He obviously expected you to use them!”

With that shift in perspective, she finally gave in.  It’s not like she’s been enduring huge pain all along.  Fact is, the docs told us that the pain would INCREASE over time, as all those severed nerve endings start to reconnect, etc.  Tylenol did the trick for a bit.  Then more Tylenol.  Then it started wearing off before time for the next dosage.  Now we’re alternating extra strength Tylenol with Percocet, and an hour before the next dosage she is asking me ‘when can I take the next one?”  Sigh  I feel bad for her.  But mostly she just sleeps. 45 minutes of activity — up, get dressed, eat breakfast — zonks her out so she sleeps the next four hours.

On the good news side, the incision is healing beautifully.  I have to inspect it daily, and I’m telling you this thing is huge!  At the same time, it gives me occasion to be in awe at the power of her body to heal itself after great trauma.  I can literally see the skin stitching itself back together… amazing.

OK, then, there’s the vision. There are moments when Cheryl bumps around with her hands outstretched like she’s completely blind, and then other moments when I’ve left her sleeping and suddenly she shows up in another part of the house just fine.  When she’s awake and feeling good, she can see better than when tired.  She explains it as “my eyes are working, they just aren’t talking to each other.”  So she has to take time to intentionally focus on what she is looking at.  My mantra over the past few days has become, “Look, then touch!” — reminding her to first focus, let her brain process, then reach for something w/ her hands.  Gotta retrain the brain.

We were warned there would be temporary issues with vision, but this is more than expected.  Still significant loss of peripheral on one side and down.  I’m having her pretend she’s got new bifocals on… for those who wear them, remember when they were new, and your optometrist told you to “look with your nose?”    That’s the drill, here.  Let’s let go of the peripheral, and focus on using what does work, which is the central zone of vision.  Apparently an occupational therapist will visit our home next week to help us create exercises to help with the vision.  And Cheryl has follow appts with surgeon on Monday to have her staples removed, and then with neurologist to do another assessment, and the following week she’ll return to see the opthalmologist who initially found the tumor.

In other news, I’m so glad my cousin, Jeanne, told me about the ten-pack of Clinic Parking passes for 40 bucks — I would have easily spent over $100 on parking so far, and there’s more to come…

and finally, I have a whole new level of appreciation for what healthcare professionals must endure every day.  I’m constantly washing, or using hand sanitizer — my hands are dry and chapped and stinging constantly — but we are infection-free, so that’s also good news!

Happy New Year, all.   And please don’t take it personally when we don’t show up at your party tonite <grin>.  We’re going to do our annual viewing of Love, Actually, and I’ll probably have a beer.  Cheryl will pass sleepily into the new decade, TUMOR FREE!  Yay!

In happiness and optimism, J

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Mon 1-4-2010 12:01 AM (via email)

Brain Surgery Update, Day 10  Happy New Year, all!

Just a quick note to let you know that no news is just… no news.  We ushered in the New Year in boring style — no dancing or drinking when you’re full of narcotics and antibiotics and you have no depth perception!  Cheryl spends 95% of her time in her La-Z-Boy recliner — the money we spent on this chair two years ago has paid about a million bucks in dividends.  It is totally comfortable for her, a single fitted sheet covers it perfectly, and it keeps her legs raised — a winning combo.

This is Cheryl’s day:

• 8AM, painkiller and breakfast.
• 9AM, antibiotics, steroids, and various other medications.
• Noon, painkiller and lunch.
• 4PM, painkiller.  8PM, painkiller and dinner.
• 9PM, pills again.
• Midnite, painkiller, with a second dose on the side table to take later.
• 4AM, wake up and take painkiller.

Exciting, yes?!  Today, Cheryl was feeling pretty good this morning and so decided, No More Percocet, just Tylenol.  That lasted for about eight hours. 

In between the four hour painkiller intervals, it looks like this:  “how long till my next painkiller?” (15 mins later) “how long till my next painkiller?”  (15 min later)  “how long is it till my next pills?”      You get the idea.  This is broken up by periods of sleep or near sleep.  I just keep telling myself, “they cut into her skull with a saw….” and take a lot of deep breaths.  Today I must have been sighing a lot when she asked the question for the 200th time, and perhaps putting off a little air of being exasperated…. Cheryl looked at me and said, “I hope you don’t take this personally.”  That was helpful.  It reminded me that it’s not Cheryl talking — it’s the drugs!

Monday is a big day — we go down to the Cleveland Clinic to meet w/ her neurologist in the afternoon, and they are taking her staples out!  For those who’ve not experienced major surgery, we are talking real staples.  Like the kind in your stapler, only bigger.  In her skull. …. Hey, if they hold the pieces together until healing occurs, yay.

On the vision front, her depth perception still sucks.  no, that’s not a medical term, that’s just what it is.  As I reported earlier, I just keep saying, “look first, then reach.”  One eye works perfectly well, while the other one keeps ’spinning,’  and the eyes are still not talking to each other.  She tried wearing a patch on one eye today to see if that helped her balance.  I told her I do not like the idea of being married to a pirate.  So… we’ll be talking to the doctors about the vision thing on Monday.

Thanks, all, for your continued prayers.

In happiness and optimism, J

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Mon 1-4-2010, 9:35PM (via email)

Brain Surgery Update, Day 11: Pathology, Painkillers, and Physical Therapy

Hope you are all enjoying the very snowy day we are having.  We live in the secondary snow belt (Parma Hts), so while we did not get the two feet enjoyed on the east side, we did get nearly a foot today.  I’m very glad our trip to the Cleveland Clinic was not at rush hour!

So, we arrived at the clinic for a one-hour event, and left three hours later.  To be fair, we spent much of that time with Dr Stevens and various nurses, so we were busy.  As I type this, Cheryl is dozing heavily. Since December 24, her biggest “outing” was a 45 minute trip to the bathroom for a shower and to get her hair dried.  Two days ago, she actually fell asleep in a chair as I was using a blow dryer on her head.  So you can probably imagine how tired she was after being up for six straight hours!!

Here’s the news.

Pathology of Tumor, future treatment

Most importantly, the pathology report on the tumor.  They confirmed it is/was a Meningioma, a slow-growing tumor in the lining of the brain.  This was visually confirmed by the surgeon on the 24th, but it was good to get a confirmation from the lab.

About 90% of meningioma are benign (WHO grade 1), about 3% cancerous (WHO grade 3), and 7% WHO grade 2, or what is called Atypical.  Cheryl’s is a grade 2 tumor, which means it is not cancer, but neither is it totally benign.  just about all meningiomas start life as benign tumors; a small number turn cancerous.  Cheryl’s tumor was starting to morph — from benign to something more sinister.  IT’S A VERY GOOD THING SHE HAD THE SURGERY NOW!

The MRI scans all showed some bruising on the brain, and now we know why — the tumor has likely been around for a couple decades, causing no harm at all.  But it recently (within past few years?) started to shift, and when it started growing faster it started to create bruising and that’s what caused Cheryl’s initial vision issues that led to discovery.

A small amount of the tumor had to be left behind, as taking that last 1% would have caused more harm to Cheryl than benefit.  Thus, it must be monitored.  She will need to return for an MRI in three months.  IF it has grown, the treatment will be focused radiation.  Chemo is very rarely used with meningiomas (ineffective).  Radiation may not even be necessary for years.

Healing from Brain Surgery

In other news, Nurse Gail removed four nasty-looking staples from her head — and since her head did not immediately fall off, I assume things have healed <grin>.  She also removed all the sutures, and confirmed that the incision is healing beautifully.  Cheryl still has a lot of Super Glue in her hair, but that will eventually grow out.  (yes, part of her is held together with Super Glue.  Amazing!)

Reduce Painkillers

Both doctor and nurse recommended that we start to experiment with painkiller administration — going longer between doses, or reducing doses.  We will start saying goodbye to Percocet.  (Cheryl is sad….too bad!)

Physical Therapy for Vision

So now we are left with incomplete vision.  It is as I described a few days ago — she has compromised peripheral vision on her left side and below her chin.  If she’s looking straight ahead, what’s below is invisible to her.  This makes walking somewhat of an adventure — she can EITHER look down at the ground to see where she’s walking OR look ahead to where she’s going.  The brain is still healing, and figuring things out.  Her vision has improved since a couple days after surgery, and again both doctor and nurses spoke about how slowly the brain heals from bruising, so she should continue to see changes for up to three months post surgery.

We left with a couple prescriptions for physical therapy (visual therapy), which she should get started within the next week.

Cheryl still cannot use a cell phone, read a computer screen, or (most horrible of all) see the TV remote — anything close she can’t see, like where her fork is on the table. Yet she can read things off the TV screen straight ahead.  So we know her vision is clear and her eyes are fine — as long as what she’s looking at falls within her field of vision.  We hope that field will start to expand much more in the coming weeks.

We are past the worst

Many of you have written that you are praying for Cheryl — for successful surgery and for a good recovery.  We’ve received all that, and we are SO grateful for your support!  While you can probably take her off the critical list, I ask that you keep her in your intentions for awhile… that her brain heals from the bruising the tumor wreaked, and that her field of vision expands so she can be functional again.

Thank you.

Since we are now into the long-slow recovery, regular updates will be boring.  I’ll send something out in a couple weeks, after she’s had some therapy and is up and about a bit more.  For now, sleep.  Personally, I’m exhausted — and there will be six more inches of snow to move tomorrow morning!

In happiness and optimism, J

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Fri 1-8-2010, 9:22PM (via email)

Brain Surgery Update, Day 15, A Note From Cheryl

Today I read Cheryl the accumulated notes I’ve received from all of you offering support, prayer, best wishes, etc.  And she wanted to send a message back to all of you.  So, in her words:

“Thank you all very much for your prayers and good thoughts. I know that recovery takes patience, and that has never been my strong suit.  But I do feel stronger each day and I just wanted you to know how much I appreciate your thinking about me.”

OK, back to Jim talking:  Just so you know, Cheryl’s had her best couple of days since the surgery.  She’s actually been up and walking around quite a bit (which is good to see, given she’s still nervous about falling over things she can’t see).  I’ve had her folding laundry and helping clean up after dinner, but then she goes and takes a nap.  The ‘gets tired easily’ will be going on for awhile.

She will spend half a day on Monday at the Cole Eye Institute at the Cleveland Clinic with her opthalmologist (the same one who found the tumor).  By the end of the day we hope to have a complete assessment of her visual capability, and a better idea as to what, if anything, we can be doing to help reestablish the connections between her eyes and her brain.

I’ll send an update next week.  In gratitude, J

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Mon 1-11-2010, 9:43PM (via email)

Life After Brain Surgery, Day 18: Eyes can see, Brain still catching   up…

It was a good day at Brain Surgery Recovery Central.

• This was the second day in a row with no Percocet, and in fact Cheryl’s use of acetaminophen (generic Tylenol) has continued to drop from a max of 4G/day to 2 — that’s just one extra strength every six hours, about what any of you would take for a bad headache.  Yay!
• Today Cheryl had an appointment with the eye surgeon/ophthalmologist who intially discovered the tumor.  The goal today was to determine what’s really going on with her eyes.  She went thru a battery of tests: full dilation, bright lights, eye charts, etc.  The outcome:
  ~Her eyes are OK.  Her vision is 20/20 in one eye, and somewhere around 20/25 in the other.  This confirms that the vision loss/confusion she’s been having is not structural.
  ~Her optic nerves — esp in the ‘bad eye’ are still swollen. This is actually GOOD news, as it means there’s potential for lots more healing.
• Bottom line, what’s happening is that her eyes are fine, but the brain is still not properly interpreting the signals it gets from them. In a manner of speaking, then her vision issues are “all in her head.”  And her head is still healing.
• And that brings me to the last part of the update.  We were reminded by the doctor today that it’s ‘only been 18 days since you had brain surgery.’ And we were reminded of that again when Cheryl arrived home, having been awake and alert for nearly five hours, and immediately fell into three-hour nap, unable to keep her eyes open.

So while Cheryl is starting to have more ‘normal’ moments, the reality is she still needs as much sleep as baby, and while her eyes are functional, they are not yet back on speaking terms with each other :-).  But Cheryl’s continuing to improve, and we have more reason than ever for feeling optimistic.

Thank you all, for your continuing prayers.  They are working still!

In happiness, J

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Mon 1-18-2010, 9:56PM (via email)

Life After Brain Surgery, Day 25:Every Day Better; Healing Bruises

Hi, all. It’s been a week since the last update, and I thought that before I taper off completely there’s time for one more.

Since last Monday’s update, in which I detailed the eye doctor’s report, Cheryl has made steady progress. Encouraged by the report that her eyes are healthy, she started giving them more of a workout. She moved from the headlines to the text of stories in the newspaper. She powered up her computer and started cleaning out old emails. At first, an hour on the computer took so much concentration that she’d then have to take a two-hour nap. But every day her eyes grow stronger, she works at it a little harder, and it gets easier. Today, for the first time since 12-24, she did not take any naps during the day (tho’ I’m predicting an early bedtime!).

Her field of vision expands a bit more each day. She has regained most of her side-view peripheral vision on the right. The lower half of her vision field is still limited – if she’d stood in front of you looking your face last week, she’d only have seen your face and maybe upper chest, nothing else. Now she’d probably see you down to your hips, but not below. So slowly, her vision is expanding. The best news is that what she CAN see, she can see clearly (tho’ it will be weeks till she can drive).

Despite the vision limitations, Cheryl grows more comfortable venturing outside for walks. We were used to walking 1-2 miles each night, and thus far she is back up to about 1/3 mile, and a bit farther each day…

So Cheryl is slowly yet surely returning to her familiar patterns. This weekend she moved from sleeping always on the fabulous LazYBoy recliner in the living room, back to sleeping flat on her back in bed. After one night of restlessness, she’s now had two nights of normal rest in her own bed. Yay!

Finally, a visual reminder of what’s going on in her head:

This evening, as Cheryl was changing for bed, she asked me to take a look at her arm. She sports matching circular bruises on her upper arms — reminders of the day of surgery when she was held in place, face down, on a frame for 8 hours of surgery. The bruises are still pretty sore and carry that sort of green/black color that deep bruises turn as they heal. We’ve been told many times that the brain takes MUCH longer to heal than the rest of the body. So, when we look at these three-week-old bruises, and consider that they are healing about three times faster than are the bruises on her brain…

…well, it puts into perspective just how much healing has yet to occur up inside of her skull.

Patience, I remind her. This is a great opportunity to practice patience. For those who know Cheryl well, you may be thinking, “yeah, Right!” Truth be told, this is a difficult practice for her. The more she LOOKS healed, the harder it is to handle limitations, compromised vision, short concentration, and the lack of endurance. So if I survive the next few weeks <grin>, I’ll send out another update after her followup MRI at the start of March.

For now, signing off from updates. Thank you for your many prayers and offers and cards for Cheryl… and for your encouragement and moral support for me. It all means so much to us.

In gratitude, Jim (and Cheryl).

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Friday Feb-05-2010, 4:45PM (via email)

Summary of this update: Cheryl’s recovery is accelerating, she’s strong enough to start easing back to work, and, most marvelous of all, she’s noticed a number of positive changes in her memory and balance that she did not even realize were ‘issues’ before, but were clearly caused by the tumor. Who knew?! (Oh, and we got our first comprehensive bill for all of this… and are VERY glad we have medical insurance!)

Thought I’d send out an update since there is actually some pretty cool GOOD News to report about Cheryl’s tumor.

First, her current status:

Today was one of the most ‘normal’ days Cheryl had since December 15. She’s been spending more time at her computer, and has completed a small stack of tax returns. I dropped her at work this morning, where she spent a couple of hours at her desk before heading back home (let’s not overdo!). She felt really comfortable being back at work, which is a good thing. For now, she’s working a limited number of tax returns at home.

Endurance is really the last visible clue that she had brain surgery - she still tires easily. While she is no longer taking a lot of naps, she does have to take what she calls “eye naps” every few hours - where she sits quietly with her eyes closed just to let her eyes rest.

Speaking of eyes: her range of vision continues to open up. We hope it continues to do so a bit more. Her straight-ahead vision is back to 100%, and her peripheral vision is much improved on the lower left. Things still ‘disappear,’ however, if they are to the right and down. But compared to where she was even three weeks ago, there’s been great progress. Yay!

Now, the Really Good News!!

Over the past couple weeks Cheryl has noticed a number of improvements that exceed ‘back to normal’ - they are BETTER than before!

1. Last summer Cheryl tripped and fell while stepping over the garden fence (about 2′ high). So as to avoid further bruises, she decided to work on her balance, and asked me to help. I set her up with some simple exercises, which she did fairly regularly, but with little improvement. She could not balance on one foot, for example, while lifting the other leg more than a few inches. At the time we both wrote it off to stiffness and “aging.” Lo and behold, she can now balance well on either leg, and I’m guessing that she’ll be hopping over the garden fence next summer. Apparently the tumor was having more affect than we realized.
2. Cheryl came to me just a few days ago and said, “I think I’ve discovered something else….” and then told me the following story:Have you ever had the experience of starting to say something, and then entirely forgetting where you were going with the sentence? Hey, we all have ‘senior moments,’ right? Cheryl says that for ‘quite some time’ she’d been having trouble with forgetting sentences mid-stream. Like, she’d be talking, and then totally forget what she was going to say next. She attributed it to aging, learned how to cover up her memory loss, and never said anything about it to anyone, even me.Guess what? It’s stopped happening! She says she started noticing the Absence of this issue a few weeks ago, and is now certain it’s gone, as it’s not happened to her in almost a month.

Again, that nasty old Tumor had apparently been giving us signals for awhile, but nobody noticed.

These two developments have reinforced, once more, what a GREAT thing it was that she decided to have immediate surgery and have that huge thing removed.

So if you think Cheryl was an amazing woman before (I certainly do!), consider that she now has inside her skull something that nobody else does: Expansion Space! As her brain continues to heal, I’m way curious as to what she’s going to discover next!

Have a great weekend, everyone. Keep warm.

In happiness, Jim & Cheryl

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Tuesday, March 09, 2010 (via email)

LifeAfterBrainSurgery Day 76: The best news we could hope for

Today we returned to the Cleveland Clinic for 10-week followup (it’s now 76 days since surgery).  Cheryl had an MRI scan and then we met with her neurologist, Dr Stevens.

Dr Stevens was able to bring up on the screen both her current MRI and the one done two days after surgery.  So each time he changed to a different view of Cheryl’s brain as it is today, we could see how it looked ten weeks ago.

On 12-26, her brain showed significant bruising (edema) and there was a fairly large empty space inside her skull where the tumor had been removed.  Today we can still see a few small edema, but most of the spots appear normal.  Her brain has expanded back into some of the empty void.

There are a few tiny spots that show up on the MRI that the doctor wants to monitor — Cheryl will return in three more months for another follow-up MRI.  Meanwhile, we received a written copy of the MRI report.  Most of it is filled with technical language that we have learned how to read, like, “dural enhancement” and “brain parenchyma” and “vertebral basilar system bilaterally.”  The bottom line is this line from the summary:

“THERE IS NO EVIDENCE OF TUMOR RECURRENCE”

We are very happy!

In happiness, Jim & Cheryl