Stumbling blocks and stepping stones

Mom and Sara, circa 1980-ish.

"Teachers who inspire realize there will always be rocks in the road ahead of us. They will be stumbling blocks or stepping stones; it all depends on how we use them."

There were many rocks in the middle of the road for Mom in the last two weeks. At times it seemed less like a road and more like a never-ending line of boulders, all facing uphill. She went back into Harris Methodist HEB for an infusion of chemo and other medicines last week, and this week she's struggled to stay afloat; she's lethargic, and she has tremors and a weak voice. We're working closely with the hospital to understand what might be causing these new and unwelcome symptoms. Two MRIs seem to indicate her glioblastoma is not to blame - there's no growth, no new tumors. But still, no explanation and no solution.

Then today Mom had surgery to remove an infected Medi-Port, a device that was supposed to make receiving care a little less painful. Putting it in weeks ago was supposed to be a good move, a solution, a blessing.

"This is an easy surgery," the surgeon said. "She'll be sore for a few days but then fine. It'll make everything easier from now on."

I guess that didn't work out as planned.

Mom's out of surgery and resting, already feeling a little better, and surrounded by my loving, tired yet tireless Dad and sisters. But it's not where anyone wants to be. On a sunny Saturday in June, after school lets out for the summer, Mom should be in a pink t-shirt, denim capri pants and espadrilles, sitting by the pool with a book and looking forward to some chilled chardonnay when Dad gets home from work. She should be rosy-cheeked from a workout at the 24 Hour Fitness with her friends, full of funny stories about their children, whom she adores like her own grandbabies. She should smell like lavender lotion and be wearing a touch of lipstick, maybe Revlon's "Wine with Everything" or "Sugar Poppy."

Mom should be planning "Grandma School" in the summer, complete with a curriculum to teach her grandson how to read and sharing tips on writing compelling essays with her soon-to-be-high schooler granddaughter. She should be enjoying retirement and teasing Dad about when he would finally join her. When they would take that barge trip through French wine country.

I guess none of this is working out as planned.

I'm frustrated, exhausted, scared, SO MAD and tired of crying all the time. And I'm coming home to Texas again, as soon as the plane can get me there, and we're all going to lock arms and figure out what else is hurting our beloved Mom, and we're going to fix it. Those doctors better be ready for us.

Chemo

...sucks.

It sucks the energy out, it sucks away your blood counts so your red blood cells and white cells drop, and you become anemic, and you have no energy to do anything but sleep and maybe eat a little of what your husband and daughter are offering you in the hopes that it transforms into something that will replace what's missing in your cells, boost your energy, sustain you while poison is coursing through your veins on its way to confusing the cells that are dividing unchecked, so that they do themselves in.

Thank you to the nurses who keep an eye on things, and to the doctor who himself seems uplifted, encouraged at her progress.

MRI brings good news

Just a quick update, and I apologize because I know it's been a while. The results of Mom's MRI yesterday came in, and the tumor has shrunk! Isn't that wonderful? Also, there were no new tumors, so maybe this toxic mix of Avastin and Temodar (chemotherapy) is doing good work up there! Thank you, everyone, for your continued prayers. It really does help.

Mom has been sleeping most of the day, though she did get out and about for a little while. The physical therapist at the hospital helped her stand for about 20 minutes with the support of a walker, and she and Daddy took a stroll/roll (he walked, she wheeled) around the hospital corridors. But chemo is well known for sapping your energy and making you feel bad in general, and it's not going easy on Mom. She's getting lots of rest and good nursing care here, though. And the food is better than it was at the rehab hospital. Speaking of which, can anyone recommend a good inpatient rehab facility? We need to find one, stat.

Rehab Center Thoughts & A Chemo Plan

When you're temporarily living in a rehabilitation center/nursing home, which, let's be honest, is a nursing home with a therapy room, you are drained of all energy.  The therapists at the center are excellent but the hours not in therapy drag on, and you're surrounded with people who are almost certain not on the same path to recovery that you are. All of us are carrying bags under our red, puffy eyes and our nerves are on edge.  All of should probably be on some kind of sleeping medicine, because I know it's been months that any of us have slept a full 8 hours without interruption, whether intentional or just restlessness.  I blame a lot of that on the center itself. Nothing "wrong" with it that I can pinpoint, but surely nowhere I'd ever want Mom to be for even a brief time.

So it's been hard to write Braintuna the last week, even though there is actually some interesting stuff going on.

Last week, Mom had an appointment at UT Southwestern Medical Center, probably the best brain care center in  North Texas.  We met with Dr. Elizabeth Maher, who provided almost an hour and a half of encouraging, supportive, friendly discussion. She shows Mom's scans (MRIs and CTs)  and she said confidently that this "cyst" is neither progressive nor dire.  Fabulous words for us to hear!  She said the scans indicated what 30% of patients with Mom's condition experience, leaking of the vessels in the tissue surrounding the cyst.  (She did not use the term tumor.)  The vessels are leaking water, and since the brain is enclosed by the skull which provides zero place for it to stretch out, the fluid pushes into the brain, temporarily squishing the pathways and connections, which is extending the negative impact to Mom's verbal and physical skills.  

The lucky thing about this is that a drug called Avastin works to slow the growth of those vessels so they don't leak water.  And the luckier thing is that Mom was already scheduled to start Avastin treatment after her 4 week rest period after radiation.  Dr. Maher recommended Mom take Avastin and temador.  The combination of these 2 drugs will relieve the fluid pressure and also block cell growth of new cancerous cells.  We are very hopeful for significant improvement after a few treatments like this.  I don't know yet how many infusions there will be, we'll update when we know that.

What we do know, however, is that Avastin itself is terribly expensive and it can't be distributed through the nursing home, so Mom is back at HEB hospital for the time being.  The surroundings at HEB are safely familiar, the nurses recognized us when we arrived, and I for one, felt oddly at home.  I know Mom can't be pleased with her new IV, since she's been off that for several weeks now.  Neither does she really like the bed that self adjusts pressure to avoid bed sores.  But she does like the bed with handles on the sides, that help her push up and shift herself around.  And she does like the Starbucks downstairs in the hospital, she enjoyed a nice hot chai latte that Sara and Macklin brought her this afternoon.  

Strange to feel better at a hospital, where people are really sick, than at a nursing home, where most people are not really sick.  I think that again speaks to the health care problem in America. I feel so sad for the people in the nursing home who had no family or friends come by. It was rare that we saw anyone outside our own family visiting, and we had literally moved into the place, and had ample opportunity.  I'd like for the  lonely folks to have a fresh smelling, private room and bathroom, rooms with showers in them, doors with push/pull instead of turn knobs, working call buttons in the bathrooms, air conditioners with clean filters, alarms that only go off in the event of a true emergency, and nurses who are 100% capable of assisting with lifting and physically caring for their patients.  (I think I'm developing a checklist for next time, if there is a next time, in a rehab center.)

I don't know what the next step is for Mom, but let's hope it's with a walker, right out of the hospital and into her own house.  Time, plus Avastin and Temodar, will help us get there.

Chemotherapy, Radiation, and other things

Mom gets some love from daughter #1

 The last 24 hours have been unlike any we've experienced before. The ICU nurses are telling Mom she has quite a fan club, between all us family here in the waiting room and crowding into her room. (We often ignore the "two visitors at a time" rule.) Last night, getting ready for a big day today, Mom had a spa treatment service equal to any you'd get at the Ritz. Jennifer and Sara pampered her with warm foot massages, peppermint lotion, hand massages, teeth brushing and flossing, and a facial. The room was a veritable aromatherapy cool sauna, very inviting and comforting, even with soft indirect lighting and a massage bed! To be honest, the massage bed is designed to prevent skin sores, so lest you think this is truly a paradise, it's not, but last night it was the absolutely best of the circumstance. I'm proud of my sisters putting aside stress and focusing on loving mom in a way that she could sink into, both physically and emotionally.

Today's emotions have been on edge; steroids and new situations can do that. We have hung pictures from the grandchildren on the wall, read her the lovely cards, letters, blog responses and Facebook messages, and we have decorated her white board (yes, she has one!) with her daughters' and grandchildren's names, pictures of a cat, hearts, smiley faces, and even a Tar Heel. She enjoys reading the names and looking at the pictures.

Speaking of reading, it's a whole lot easier now. The turban which has been protecting her incision was removed last night. I expected a careful removal, involving cutting tape and unwinding the gauze... instead, the doctor put his hand on the top, grabbed the gauze, and lifted it straight off! Kind of like removing a stocking cap after spending a day skiing. It just slid right off!

You'd be amazed to know that from looking at her, you cannot even tell Mom's had brain surgery. The staples in her scalp match the color of her hair, and you have to lift her hair to see them! The surgeon did an amazing job. Mom had two shampoos last night and will get another one tonight. It must feel great, she really enjoys the shampoo and massage.

After breakfast, Mom took her normal course of pills, and today there were three new ones. These are chemotherapy pills to help her fight her tumor. These pills will not cause Mom to lose her hair (the radiation might), and they make her nauseous, but they are far less harsh on her system than chemotherapy for non-brain treatments. Something to be thankful for, brain cancer chemotherapy doesn't make you that sick.

After lunch, Mom went for her first radiation therapy treatment. This was about a 30-minute visit to the Edwards Cancer Center (the radiology area of the hospital), so she got a nice field trip driving on that fabulous massage bed. Must have been nice to get out of the room. Sara and Mary Claire surprised her by cheering in the hallway as she was rolled by. Upon returning to her room, she got the chance to love on Catherine and Mary Claire, who took turns being carefully escorted back to her room to give her pictures, tell her about their day, and give treasured hugs and kisses.

Happy MC gave her beloved Grandma a homemade card.

This afternoon Mom was showing trouble swallowing, so her diet was changed from a very normal diet to a minced diet. The change in menu didn't get to the dietitian's office in time, so dinner was pretty fun. The nurse brought her a nice large, baked, seasoned chicken breast (good) with wax beans (not her favorite), mashed potatoes and gravy (yum!), a wheat roll (hard to eat), and what I think was cherry cobbler (mmmm). Then, as Dad was cutting up her chicken into little bite-sized pieces, the nurse brought in a second tray, the 'correct' diet! It was the exact same meal on the plate, but in mini little pieces. Even the soup was pureed. It was infinitely easier for Mom to eat. It didn't improve the taste of the wax beans (what could?), and the new menu didn't include any bread or cobbler, but the chicken and potatoes must have hit the spot; she enjoyed them.

Now dinner is done, it's non-visiting hours in the ICU, and the nurses are busy transitioning their duties to the next shift coming onboard. We'll miss Abby and hope she has a good night, she's a wonderful nurse! Hope to see her again tomorrow. As we kissed Mom goodbye for a few hours, she stopped Jennifer and waved her hand at her. She wanted to know something...and she wanted to get the words out herself...and she did.

She said San Francisco.

Our Mom's voice is in there, and today it came back a little. Thank you God, thank you chemo, thank you radiation, thank you neurosurgeons, oncologists, nurses, dads, grandchildren, sisters, families, friend families, work families, all around us.

Mom said San Francisco today.

It was a good day.

Mom's yellow roses are blooming today.