Mom's wisdom

"Here's the thing about life. You've got to find those fun things to have about life. This is not necessarily fun.
But you've got to find something fun." - Mom, on June 22, 2012.

Showing posts with label radiation. Show all posts
Showing posts with label radiation. Show all posts

Saturday, March 24

On to rehab

After Thursday's disappointing MRI results, it took a little while for us to catch our breath and start focusing forward again. It's hard not to think about the future, and we know that we have a lot to be thankful for in the present. Everything feels a little easier to bear if we only think about today and what's happening in this moment.

Graduation Day


Friday was a big day: Mom graduated from radiation therapy and left the hospital! She was presented with a graduation certificate signed by the Edwards Cancer Center staff for completing her prescribed course of radiation therapy with courage, strength and a positive attitude. And then, back in her room, she was transferred to a wheelchair and rolled out of room 210 for good, and the oncology unit staff on duty stood in the hallway cheering and hugging Mom as she left for the rehab hospital. After 44 days at Harris Methodist HEB, Mom had made many friends in the oncology ward, and it was touching to see how happy and proud they were to see her move on to rehab. We took a few photos and will add them to this post soon.

Friday night and Saturday were all about settling into her new room at Reliant Mid-Cities Rehabilitation Hospital. She had a great day today, and there are a lot of things we like about the new facility. (So far the food is great!) When we're a little more clear-headed, we'll add a few stories and photos. Also, Mom does not have therapy on Sundays, so tomorrow is a nice quiet day; other days of the week will bring an aggressive schedule of therapy (1.5 hours in the morning and again in the afternoon), so she'll be busy - she's excited and ready for it.

For now, we're enormously thankful to have Mom out of the acute hospital and into a place that's quiet, bright and cheerful, where she can start rebuilding her muscles and improving her speech so she can come home to us as soon as possible.

Strength does not come from physical capacity.
It comes from an indomitable will. - Mahatma Gandhi

Wednesday, March 14

A breath of fresh air

It feels good to sit up.
Yesterday, Mom left the hospital for the first time since February 10. She sat in a wheelchair (also for the first time since her arrival), and Dad wheeled her downstairs, through the chapel and into a quiet, private chapel garden with a fountain. The rain clouds were building, and the sun's rays shone through occasionally. It must have been nice for Mom to breathe fresh air and feel the sun on her face for the first time in weeks.

Dad and Mom
Side effects and the countdown

Side effects are really a misnomer. Because you can't really feel the main effect of a drug (the healing), all you really notice are the side effects. Maybe we should call them "noticeable effects" or "all over awful effects", because believe me, side effects are never good. Side effects never improve your skin or make your teeth whiter or hair glossier.

No, side effects are brutal, and Mom is starting to feel them pretty badly. She's been on a high dosage of steroids and chemotherapy for a number of weeks, and now she's in week three of radiation therapy. Between the three, she's suffering crippling exhaustion, hot flashes, shaky hands, increased appetite, brightly flushed skin in some areas where the radiation beam is aimed, and terribly dry, paper-thin skin on her hands. Not to mention the terrible hematomas on her arm from an extremely untalented phlebotamist.

Today she made us all nervous when we noticed swelling in her face. It turns out this, and the swelling in her right hand and foot, are also on the list of notorious side effects. Weight gain is to be expected in patients on high steroid doses. It's not uncomfortable, thankfully, and we can help by giving her a good, healthy diet. (It would be nice if the hospital would help us out, there. Sugary danishes for breakfast? Really?)

Only 7 more radiation treatments to go! Way to hang in there, Mom - we're all so proud of you.

Tuesday, March 13

Monday's update: part 2

Courage is grace under pressure. - Ernest Hemingway

Yesterday I read a story about new research showing definitive proof that a parent's love is key to brain development in children.
After taking into account a whole range of factors that can affect hippocampal size, the researchers found that children with especially nurturing, caring mothers, based on their behavior during the laboratory stressor, had significantly larger hippocampi (plural of hippocampus - you’ve got one on each side of the brain) than kids with mothers who were average or poor nurturers.
If I had paid attention in my high school biology class, I would have learned that the hippocampus is responsible for a person's ability to handle stressors and to store personal memories. Small hippocampi makes one less likely to show grace under pressure, and sadly, that pressure can even shrink one's hippocampi.
In addition to protecting us against brain illnesses, we all need big hippocampi because this brain area, while not much bigger than your little finger, plays a disproportionately large role in how you will be able to handle the stresses and strains of your life, and how you will remember your life when it’s all said and done. This is so because the hippocampus is crucial for our ability to form and store personal memories. It is also of central importance for restraining the body’s stress and inflammatory responses, both of which can induce significant damage to bodily organs and the brain if not properly reined in.
Children who grow up to have small, underperforming hippocampi are less able to handle stress; that stress in turn shrinks their hippocampi - leaving them even more at risk for illnesses and depression.

Parents only have their children in their immediate care for around 18 years, but their love sets them up for success for a lifetime.

Two sets of loving parents, Ken and Judy
and Sara and Charles (with son, Macklin). Christmas 2011.
Luck and love

These days we spend a lot of time thinking about how lucky we are to have been raised by such good parents. You couldn't ask for a more loving mom or dad. Mom's new adventure with brain cancer is about the biggest stressor we can imagine, and it's one that we never anticipated. We can handle it, though, and carry Mom through the rough times thanks to our loving family, supportive friends, and our big, healthy hippocampi.

Coda to the radiation story

Edwards Cancer Center is the hospital facility that provides the radiation therapy, and we had a good experience with them until now. The staff have been kind, and the lobby is light-filled, cozy and offers a family lounge with puzzles. Patients and families work on a puzzle while waiting, but appointments last just 15-20 minutes, so we only get a few pieces placed at one sitting. When we return the next day, the puzzle has more pieces complete than when we left it, and the picture slowly comes into focus through the collaborative efforts of strangers. It's both a solitary and communal activity to pass the time.

Usually we look forward to radiation, but the last several days have just been one aggravation after another. Mom's appointment was canceled last Friday so they could perform a software upgrade. Apparently software upgrading is an activity they are unable or unwilling to do on a weekend when they are usually closed, so patients needing this critical therapy were told to simply wait.

And wait we did, more or less patiently, until Monday. As Mom's appointment time approached, she was told that there would be a slight delay - the radiation machine had "gone down." (Did they try rebooting it? Sorry, that's an old IT joke...) The nurse told us Mom would be wheeled to radiation later in the afternoon.

So the time passed. And passed. And then it was dinnertime, which came and went without any word from the folks at Edwards Cancer Center. Our patient nurses were losing their patience, and calls to the Center went unanswered.

At 6:15 pm, we realized that waiting patiently was perhaps the polite thing to do, but it was achieving exactly nothing. I suggested calling Mom's oncologist, and Dad agreed but suggested that we (Jennifer and I) go down to the Center and see how much longer we would have to wait for radiation.

When Jennifer and I arrived, the Center was open and brightly lit - but there was no one to be seen. The front desk was abandoned, with the phone unmanned and CDs of patient records sitting on the desk for anyone to take. We waited, knocked on the doors, spoke loudly, and still no one came. I called the Patient Services Representative line, which forwarded me to an answering service where I left a message for the radiation oncologist-on-call.

Where are your people, and why have they left a patient with glioblastoma multiforme waiting?

Meanwhile, Jennifer slid past the "Patients and Staff Only" sign and went in search of some answers. She found a technologist, and we asked her how much longer we would have to wait.

Oh, the machine was down for over an hour this afternoon, and we got behind. We can't catch up with everybody. We'll have to start again tomorrow.

You can imagine our response. We asked whether they prioritized the waiting patients to put the most critical ones first? (No.) Couldn't they just fit in one more patient? (No. It was past closing time already, and the front desk staff had left for the day.)

That was the moment our hippocampi kicked into overdrive. To make a long story a little shorter, let's just say that one of us cried, the other one got really mad, the radiation oncologist on call was consulted, and they decided they could, in fact, manage just one more patient.

So Mom got her radiation therapy around 6:45 pm on Monday, and we're back on track for the remaining two weeks.

And that, my friends, is the kind of perseverance taught to us by our Mom.

Monday, March 12

Monday's update

Faith is an aptitude of the spirit. It is, in fact, a talent: you must be born with it. - Anton Chekhov

Keeping the faith

Mom's neurosurgeon stopped by and was quite the cheerleader, raving about her progress! He said she is doing very well; he can tell from her movement and from her speech that the tumor is shrinking! Yeah! We were thrilled at the good report and happy to see Dr. Singel; we appreciate his optimism and commitment to using the "big guns" (his words) on Mom's cancer.

Mom's words are much more clear and steady than last week. Her thinking is still faster than her mouth, which does frustrate her sometimes, but she recognizes when that happens, deliberately slows down and tries to get the right word out. Or, she closes her eyes and thinks, and then says, "I don't know, I'll have to do it later." The easy phrases come out simply; the harder words and unique thoughts are more difficult. There is still good news in this, though. The neurosurgeon confirmed that this speech pattern is one that can improve with speech therapy, and it's not a permanent condition. So we have more goodness to look forward to.

Another success is Mom's arm exercises. She is pulling strongly on Dad as he helps her move her arm towards her nose and then push back. She's counting perfectly up to 10 and to 20 during her exercise, and she's holding her hands together while she works her muscles. The therapists have said that her hands will teach themselves what to do, what one hand does, the other will want to do. This is interesting, because in years of Suzuki lessons with the girls, our teachers have said what the right hand does, the left hand automatically follows (and vice versa) so you have to consciously think of that when you're learning to play the violin and cello. Mary Claire "practiced her cello" today while working through Mom's exercises with her. Everyone needs a little stretch in the afternoon and working out with Mom makes it easier and more fun for all of us.

A few challenges

One difficult spot today was getting another IV put in. Mom's poor, sad, overworked veins. They are tired of being poked and pulled and filled with all kinds of medicine. After many valiant attempts from the assigned nursing staff, and a heat pack to try to plump things up, and a full hour of trying, there were many tears but no success. Finally, a smart person decided to call the local expert. She came in, took a look around, gently prodded a few times, and then quickly put the IV in with success. After a few strongly worded suggestions, the charge nurse agreed that Mom will only get new IVs from the expert from now on. A special note on her whiteboard that says "Contact Expert." (Okay it doesn't really say "expert" but I can't remember the exact acronym of the very special nurse.)

The other unhappy thing about today is that Mom's radiation (as of 5pm) hasn't taken place yet. The machine is down. GRR! This is the same machine that purposefully taken down on Friday for a software update. So we lost Friday and probably Monday's radiation. Mom eagerly anticipates each treatment, knowing that they are helping shrink this tumor as much as possible. Not having a treatment, and not finding that out until late in the day is more than frustrating. I imagine it would be a lot more disappointing if Mom weren't making such awesome progress otherwise. She's working so hard to get well, and her efforts are paying off despite the interruption in the scheduled treatments. We will be happy to get back on track, though, so we can see what other new wonderful things Mom will say and do this week.

This weekend Mom enjoyed lots of restful naps, sound sleep, many hugs from her family, and at least two nail-bitingly exciting ACC basketball tournament games. She cleaned her plate (except for the nasty carrots and green beans) at every meal, and she enjoyed her Blue Bell strawberry ice cream. And we all know ice cream makes everything better.

Friday, March 9

Sad moments and angry birds

Wednesday's big afternoon remains the highlight of our week so far. Thursday and this morning, Mom has struggled with a sore throat, a side effect of radiation. It took a while for us to figure out that was the problem; she was in pain while trying to eat, and she especially disliked hot liquids. We thought it was indigestion, but finally Jennifer noticed Mom was waving her hand in front of her mouth, and she realized that it was a sore throat. Lozenges and cool soft foods like yogurt and pudding seem to help.

Then yesterday she had an IV moved from one hand to the other arm, and the nurses struggled to get this one in due to the fact she's had so many IVs in the past few weeks. Her veins are tired of the IV medications, so they harden and become ineffective and painful. One arm is covered in dark purple bruises from where an apparently untalented technician took blood for routine lab work.

It was a very difficult morning, and the past two nights it's been hard to relax and sleep. This means neither Mom nor Dad have had any rest.

Also, she's had a headache, which seems such an insignificant thing comparatively, but really, it makes everything harder. So we're all a little down about these last two days.

We're also down because the radiology unit is closed today; they are updating some software. Not happy about that, either. It seems crazy to close a unit that is critical to cancer patients, instead of just doing the software upgrade over a weekend when they are already closed. Apparently Mom has to wait until Monday for her next treatment.

Mom is not disappointed about this, though. Radiation is exhausting. When we said her appointment was cancelled today, she said in wonder, "It is? Yay!"

A few bright spots

On this cold, wet, miserable day, we can still find a few moments of hope and enjoyment.

  1. Spring Break starts! Granddaughters will be able to spend more time here and will have no evening activities for an entire week. So picnic dinners in the waiting room are on the agenda.
  2. Grandma Marlene Berg is going to California to give grandson Macklin and son Charles all kinds of hugs, home-cooked meals and love.
  3. Today's nurses are great and gave Mom an in-bed bath, shampoo, peppermint lotion foot rub and a eucalyptus lotion back-rub. Maybe now she'll be able to nap!
  4. Mom's occupational therapist, Stacey, suggested she practice typing on her computer, clicking letters to get some mental exercise. So after lunch we tried having Mom type on a simple Word document on a laptop, but she had trouble hitting the keys; instead, she wanted to touch the screen. So we switched to her iPad, and she automatically tapped on the Angry Birds app and started to play. It takes enormous effort to hit the target with her finger, so she didn't set any high scores, but she was smiling and chuckling at the silly birds and their chattering.
Sara helps Mom with her letters.

Angry Birds needs a new version: Angry Birds Oncology Ward.

Friday, February 24

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.