Gargantuan

Today I see the oncologist who is following up about my original rectal cancer. She has been busy having a baby, and now that she her daughter is five months old, she is back seeing patients.

I decide to do a test run. Now that the chemo is over, I want to start getting back into the swing of things, so I decide to drive myself to the appointment. I know I am post prednisone, but I want to find out where my limits are now and whether I can push through anything.

I plan ahead. Leave early enough so that if I have to sit in the parking garage for a few minutes to recover my strength, I will have time. I figure that the drive there is a quarter of the demand, the walk to the office another eighth, the appointment another quarter, the walk to the car another eighth, and the drive home the last quarter. I know where the benches are where I can rest if need be. I pace myself.

I am shaky going out to the car. It takes everything I have to just walk down the stairs. Maybe this wasn't such a good idea. I sit in the car and munch a few animal cookies. The shakes stop.

I haven't driven in ever so long. I pay extra attention, staying in the right lane and moving only just at the speed limit, not worrying about cars that need to drive faster. It's only a short distance to Exit 17. I am OK.

I don't need to sit in the parking garage, so I walk slowly to the elevators on Orange 3 and push the button shielding my hand from germs using my tee shirt.

Uh-oh. The walk from the elevator to the clinic becomes daunting. I do my best to stay out of people's way because I am walking so slowly. You know you are in bad shape when a 90 year old man whizzes past you and then looks back sympathetically. Sheesh.

I make it to the strategically placed bench at the entrance of the Cancer Clinic and sink down gratefully for a few minutes until my jello legs regain solidness. I am still OK. Somewhere inside, my body is getting the message that the gates need to open so I can draw on the reservoirs.

At the registration desk, I encounter a little old couple who move at the pace of tired snails. Not because they feel ill, they are just old and slow. One sentence takes forever, and the husband and wife each take their time about checking in, losing their parking ticket (I could have told them it was in his wallet), asking repeatedly about their new insurance card.

I couldn't manage to stand long enough for them to finish, even with leaning on the railing. I finally sat down until they completed their transactions, then approached the desk, leaning heavily on the counter while I checked in.

It was delightful to see the doctor, who didn't fuss around. She was most sympathetic about what I had undergone since last we met, and happy that the tests had finally revealed the problem.

She patted my shoulder and indicated that my CEA levels were excellent and that she would not put me through anything else today, but wait until next time we met. She said there is still no sign of the rectal cancer (yeah!!!) and that she would see me again in 6 months for a followup.

Done! I made my appointment for March 2010 and slowly headed back to the parking garage. I thought I could make it to the elevators, but ended up resting in the chapel on the way out. Not a bad place to rest!

It took gargantuan effort to navigate on my own, but I did it! It felt like trying to maneuver one of those cranes in a machine of prizes, trying to pick up a tiny ring. Awkward, but with enough persistence, it can be done. Somewhere on the drive home, an extra bonus of energy appeared.

All in all, it wasn't so bad. I didn't end up panting on the couch totally done in either. Maybe tomorrow I should try another field trip!

One More Roller Coaster Ride

Once again, my roller coaster is plunging down, past where I have always stopped before, not careening wild or out of control, just descending. I wonder briefly if I will reach a point where I will need help to breathe. I already know that walking takes almost more than I can muster strengthwise.

With every other round, when I reached bottom, I knew I was leveling off and that the ascent to feeling better would start soon. If things were difficult, there was always a medical option to help regain ground and build strength. So will there be with this round, I have every confidence.

The new piece is that there are no more rounds! I can barely wrap my brain around it. No more being knocked down in battle, no more writhing through channeling all my energy into helping the chemo kill the cancer, no more patience while my body eliminates the carnage. Yes, yes, yes! Done!

This time when I put my feet down, they will not get knocked out from under me - at least not by a chemo induced war. I do still have phase 2, the radiation therapy. At least that is a shorter exposure time and I do have a few weeks to reset before October 7 & 14.

Meanwhile, I rest and let the roller coaster glide, confident that the descent will end and tomorrow will be better!

Listening

You wonder if your children really ever hear anything you tell them. When first you hold your newborn child in your arms and realize the tremendous responsibility you have of teaching them about the world and how to live, you are overwhelmed.

As days go by, you find yourself talking to them, teaching them cute little songs, telling them "No" to keep them from harm, 'learning' them the a-b-c's. As they grow older, you entrust some of that teaching to others (sometimes out of sheer exhaustion). Then you find yourself repeating everything because they seem to have gotten hard of hearing.

"Pick up your toys. Pick UP your toys. Please pick up your toys." And you wonder. Do they pay any attention to you any more? Do they even hear what you say?

Eventually, you get used to it, and you try to only insist that they listen when its vitally important. Sometimes even that doesn't seem very effective.

But once in awhile, you realize they DO hear you, more than you realize. Like today. I have been fussy and restless. This last round has been the most challenging and I am not comfortable or at ease. I grump about everything and in general, I am not pleasant to be around. I know this about myself. I tell them to ignore me, but I can't seem to prevent the little outbursts. I can only try to keep them to a minimum.

Today the boys had errands to run. They both had gotten paid and needed to prepare for the start of school, getting all those little things that are not on my list. I was happy they got a break, got to do some normal things. It has been difficult for them to watch me go through this last round particularly. I could tell from Drew's posting on Facebook about my last infuzion.

The surprise was when they returned. Neither son earns much money. Both have lots of needs. But both of them quietly spent their hard earned money on a little something to cheer me up, on something they knew that I would like from listening to me.

They were brief conversations, and even I had not given them much thought. But when each son in turn shyly presented me with their gift, it was exactly what I needed to cheer me up, to touch my heart, to bring comfort to my weary soul.

How could I ever think these boys do not listen! Perhaps they do not appear to have their outward ears in working order, but they clearly hear with their hearts. And that makes all the difference. Now if only I could learn to hear as well.

One White Hair

Last night before I went to bed, while I was brushing my teeth and gargling with the mouthwash from the pits of the earth that helps prevent mouthsores, I noticed something unusual growing from the left side of my head.

Can you believe it? A small white hair, about a quarter inch long, was waving - yes, actually waving - from the side of my naked scalp! Like the unexpected appearance of a deep purple crocus in the snow, a marker of relief! A thaw in the winter storms of life. A hint that better days are ahead, life is returning, spring will come.

Quickly I checked the rest of my head and for eyelashes and arm hair. Is there another? YES!! On my left arm, a small white hair about a quarter inch long!!! You have to hold your arm up to the light just so to see it, but its definitely there! Ya-hoooo. There is hope ahead.

This morning I woke excited and ran to the bathroom to see if it was still there. Oh, pooh. The hair on my head was gone. Disappeared in the middle of the night, a victim of the last round, I am certain. But I know what I saw. I checked my arm.

At first, I could not find the tiny little hair, but then, suddenly with just the right slight twist of my arm and just the right reflection of light, there it was! Still hanging on, promising that change is on the way.

Such a silly thread of hope to hang your hat on, yet ever so important. It is not always the big miracles that speak the loudest to our wounded hearts. Sometimes all we can process are the little signs of life, just enough to set us free from the winter of hardness but not so huge as to drown us with unreasonable expectation.

Hang in there, little hair. I know more will follow. I shall not be forever dangling over this precipice of pain.

Tucking

When the boys were little, we developed a bedtime ritual of tucking them in at night. I'm not sure how it all began. I suspect it started when I moved them from the bassinet beside my bed to the crib in their own room when they were around 6 months old and didn't need so much nursing and night care.

It can be scary to move from the familiar to the new, especially if you lose touch with your Mom in the process. While I always kept a night light on for them at first, the room must have seemed quite different and very lonely. I am sure they thought their little world had turned into a frightening place.

I didn't put the whole set of actions together right away, but gradually over time, as I worked with each child, I would add in something that helped calm and comfort each boy until the set of steps became more set. As they grew older, I dropped pieces that no longer seemed appropriate, and by the time Drew came along, we had settled on something like this:

After the kids changed into their pajamas and brushed their teeth, they would hop in bed, giggling and waiting for me to appear. I would come in and sit on the side of the bed and we would chat a few minutes about the day and anything on their mind.

Then I would carefully tuck the blankets in all around their body, making a sort of cocoon to ensure that they would stay warm and safe. I would lay my hand on their head and pray first the "Now I Lay Me Down to Sleep" prayer followed by a personal prayer that they would have a good night's sleep, good dreams and no bad ones, and wake up in the morning feeling fine.

This was followed by hugs and kisses when allowed, a pat on the legs, then I would tiptoe out, turning out the light and pulling the door partway closed. Sometimes I would get the "Mom?" procrastination question when they were not quite ready to go to sleep.

It had always been a good way to end the day with each son. Now, I am delightfully surprised to find that my two sons take turns tucking ME in! Especially when I have had a rough day. Though today was much better than yesterday, I was exhausted by 9pm and ready to hit the sack long before those two would turn in well after midnight.

Last night Kiel tucked me in. Tonight Drew tucked me in. Its a wonderful feeling to know someone is taking care of you and seeing that you are comfortable for the long night. They leave out the "Now I Lay Me" prayer, but still pray that I will have a good night's sleep and no bad dreams and wake up feeling great (with much emphasis on this part!).

I find I like to be tucked in even though it means I am no longer in charge of my household! Eventually, though, things will return to normal. I no longer tuck the boys in these days. Perhaps they will be glad to no longer have to tuck me in either!

Compassion

Around 7pm, I sat in the blue recliner, moaning. Drew looked over at me and I said something like, "Make it go away. I am so tired of feeling sick."

Drew laughed and said, "Mom, you've come all this way after weeks of chemo and you want to quit NOW??!!!" I stared at him, miserable, and sighed. He was right of course. I have already come through the whole treatment except for the few days after the final round.

Granted, this one is a toughie, but suck it up. You are so close to the finish line for phase 1 you can taste the victory. So I determined to just grit my teeth and think about better days ahead. Drew, on the other hand, suddenly turned into a softy.

He put on a Veggie Tales DVD to cheer me up, filled my glass with ice and fresh water, and dipped me a chocolate marshmallow waffle cone - one for himself too - and we licked together while laughing at the antics of Lyle the Viking and Josh and the Big Wall.

Drew's sudden fit of compassion reminded me of when I worked at the Wesley Nursing Home in Saratoga. I was young - barely 20 - and assigned to the third floor where residents took care of themselves for the most part. I worked the night shift which consisted of making hourly rounds, answering any call lights, assisting people to the bathroom when needed, and changing linens should there be any accidents - which thankfully there were few.

It was a job. I did what I was told to do and wrote everything down in the log book. I didn't get to know many of the residents since they mostly went to bed at 10pm and my shift started at 11pm.

Just the few who had to get up in the night, like Mrs. E who went to the bathroom a dozen times of an evening and the diabetic in the corner room who had to be helped into her wheelchair (she often snuck chocolate at night, and had to have the nurse from the first floor come and rescue her from herself).

Then there was Mr. D whose legs ached, causing him to walk around and around the floor loop past the resident's rooms and by the office where my desk was situated. He never smiled as he shuffled along and sometimes he would whack the wall with his cane if he were in a particular lot of pain.

One night as I was writing up my last round in the log book, Mr. D appeared in front of the desk. I hadn't heard him coming, so was a bit startled. He mumbled something I couldn't make out, and I asked him to repeat it.

"Pain!" he shouted at me. "Need my pill." I got out the meds book and looked it up. He wasn't due for another two hours. I explained to him that it wasn't time yet and he would have to wait. He whacked his cane down on my desk and I jumped up, knocking over the chair.

"Pain!" he yelled again and we glared at each other.

"I'm sorry, there's nothing I can do until your medicine is scheduled." I explained patiently. He continued to stand there, and I was just beginning to think I should call security when he turned and shuffled off down the hall toward his room.

Whew! That was a bit scary. I decided to finish my log entry, then check to make sure he got back to bed alright. But he didn't go back to his room. By the time I heard the elevator bell ding and realized it wasn't time for security or the nurse to appear, it was too late to stop Mr. D from leaving the floor.

My heart was racing with fear as I picked up the phone and called the nurse on duty. I quickly explained the situation, and she assured me that she would take care of it. Twenty minutes later, the two of them appeared and headed for Mr. D's room. I waited with bated breath, wondering what was happening.

Finally, the nurse came to the office and sat in the chair across from me. She explained that even though my supervisor had instructed me to not give in when residents ask for their medicines (usually because they have lost track of when the last had it), there are times when people are suffering and in need.

Even though time for the usual medicine had not arrived, there were other options, especially when dealing with a resident who should by rights be on a floor where more nursing care is available. Mr. D's condition was deteriorating and he definitely was in pain and in need of help.

Of course, I could have no way to know that, so the nurse just told me that should anyone ask for meds early, to simply call her and she would make that determination. Wise woman. But it didn't keep me from feeling badly that I had not understood what Mr. D was going through, that I had only known to function according to the rules.

I learned that day that a job dealing with people is never just a job, never just a set of guidelines and rules and tasks. Working with people requires getting to know them and what makes them tick. It requires compassion and understanding along with the work. It was the beginning of learning to see things through the eyes of others, a lesson I have never forgotten.

Drew is young to see such an important piece of life. Compassion and understanding of what others are experiencing are so necessary. I hope he keeps it on his radar screen. Meanwhile, my cone is gone and I am headed for bed. Tomorrow will be better.

The Day After

Ugghhh. I definitely do NOT want to get up today. My head aches, my stomach is upset, my pillow is hot where my naked head has been laying, my body hurts. But I know I will not feel better until I get those drugs in me, so I drag myself to the bathroom and stare at my puss in the mirror, smacking my dry lips and rubbing my stubbly head.

I move in very slow motion this morning, but finally manage to pour a glass of cold water and swallow pill after pill - one for the stomach pain, one for the nausea, two for the constipation that comes without biding, then wait an hour.

Once I can eat something, the Prednisone comes next with its nasty aftertaste. I have no more jelly bellies to wash the taste away (Sugar licked the top of the bowl and Drew threw them away. Boo Hoo. Well, they were a bit sticky from the humidity.) After that comes the Valtrex to deal with the mouth sores.

I sip a bit of Earl Grey tea, manage to squish down a half a banana and a bit of yogurt, then a piece of toast. It takes until about 10 am so before I begin to feel human again. Once the Predinsone kicks in, things smooth out and I can function. Sigh. I dread running out of that. But its only one more time.

It's not so bad, really. This feeling of constantly having the flu will end soon. It will be nice to feel well again. Soon. I am hoping for at least a couple weeks of wellness before we enter phase 2 with whatever that may bring. Lord have mercy.

The Final Round

I find myself once again sitting in an examination room waiting for the doctor to appear. I am still undecided about whether I want to do this last round or not, but I have to admit that I am feeling up to it. I always feel as if I have finally gotten to a point of feeling better when its time for the next round, and this day is no different.

It has been a long and arduous 15 weeks - nearly 4 months. Three more weeks to go. I know mostly what to expect. It will not be a picnic. But I know I can do it. And I am picturing all those nasty cancer cells dying and flushing from my system. That is, after all, the goal.

The doctor and nurse enter. She tells me my numbers are good. She thinks I can tolerate the final round if I am up to it. She leaves the decision up to me because I know how I feel, and there is a week of "wiggle room" if I want to take it.

I hear myself say, "Let's do it!" I know it is the right decision, even if I would rather not go through the junk again. Suddenly the room jumps into action. I am handed a print out of upcoming appointments - a bone marrow biopsy, a CT scan, the appointments for the Bexxar in October, complete with scans. Yikes!

It's all moving so fast. I am not quite ready to be jumping into phase 2! The doctor sees my panic, and assures me that I will still see the allergist in September, not to worry. I will have time to sit with the expert on Bexxar (who just happens to be the nurse) and talk about what to expect from that.

But for now, just head back to the Infusion Center and let's get this final chemo under way. Good girl! I make a pit stop at the lunch bar and grab a sandwich and gingerale. I know it will be several hours before I am done, and its noon. I slowly make my way down the long hall, past the blood work lab and several offices and elevators to the familiar desk with the same receptionists. I check in.

I have plenty of time to eat lunch while they wait for my drugs to arrive. I resist the urge to turn the TV on to drown out what is coming. I am stuck in a back room with no access to the sunny windows I usually sit by. Blah. The nurse hooks me up and zips through the process, getting me out in record time. I am home by 2:30!

Wobbly and with a headache, but done. A milestone. The final round. Now I just have to get through the next two or three weeks. Oh, and go back in tomorrow for my Neulasta shot so my counts don't plunge. That would be good. Think I'll just sit this afternoon out. Maybe try to rest. I'll celebrate later, when the dust settles.

Resting

Tomorrow I will find out whether I get my final round of chemo. Part of me wants to have it and be done with this phase of treatment. Part of me wants to wait and be safe, make sure I can tolerate what promises to be the most difficult round yet.

But I can do nothing about it today. Today is Sunday, a day of rest. I have to contemplate what a day of rest means when you are not really working very much. Oh, I piddle and poke at things, but I wouldn't call what I am able to do working hard. So can you rest from being relaxed already?

Most of the work I do is cancer fighting, and I can't stop that just because it's Sunday. My body and the chemo keep on fighting regardless of the clock and calendar. So how then do I rest?

I decide rest means more naps! And I do just that. When I am sleeping, I am out of the way of the work my body is doing, and my mind is at rest. I am not tempted to jump online and check stuff out or wear myself out reading or watching movies.

It feels good to stretch out on my comfy mattress and snooze. I hear the boys playing games in the kitchen, laughing, razzing each other. I smile and roll over to sleep more. Tomorrow will bring what it will bring. Today, I will prepare for it by resting.

Fall - Already!

I glanced out the window as a gust of wind dislodged a handful of leaves and sent them skittering to the ground. "How odd!" I thought. It is August. This is no time for autumn leaves to start falling. The wind blew harder and sent another handful of yellow and brown leaves fluttering down.

I glanced at the trees surrounding our building, but could see no color on the trees. Only a delicious and promising green everywhere. Perhaps it is just a fluke. But later when I took Sugar for a walk, I discovered to my dismay that around the corner, the small tree Sugar likes so much was entirely yellow near the trunk with a plethora of dead leaves scattered about the roots like so many scraps of paper littering the grass.

Fall. It is inevitable. While I love the reds and oranges of fall, and the start of school and apple season, I do not wish to say farewell to summer. I have worked so hard to endure the chemo, and appreciated the cool summer we were blessed with, but I missed all of the summer activities I so wanted to do.

No weekend camping trips to state parks like Letchworth. No picnics of hot dogs and hamburgs. No swimming in the complex pool. No walks in the Rochester parks. No farmer's market trips. No Concordia classes and meeting friends. No campfires and s'mores and giggling with the boys as we make our way somewhere in the dark with just a little flashlight.

Ah, me. Even had summer lingered, I would not be able to "do" summer this year. But its OK. There will be other years, other good times. Because I sacrificed this summer so I could have future ones.

So come ahead, Fall. I will miss most of you too this year. By the time my treatment is complete and I am able to get my feet back down, it will be late November, maybe even December. I will watch your leaves flutter past my window and be glad to see them. For I know that by the grace of God, there will be other years to immerse myself in all that each season offers. And I am content to remember past seasons with joy.

Striped Fingernails

One of the cool effects of the chemo I am taking is that my fingernails developed white stripes! One of the nurses mentioned that he thought they were called bow lines, and that you get one for each chemo treatment. So far I can count four, and I suspect the rest are on their way up.

It's kind of like tree rings, I suppose. You mark your progress by the number of rings showing. And you wear them with pride. No nail salon could make such perfect embedded lines, all the same white color, but each individual as far as how thick they are - which probably is some indicator of how the chemo hit your body. So far the second and third ones are the fattest.

At least my nails have not fallen off. I have heard others talk about how their fingernails and toe nails hurt and lifted right off. I am lucky. Just stripes for me. Let's keep it that way!

Blood Check

Today I head in to the clinic for a port draw. It took some convincing to have them make the appointment there. Should I go to any other lab, it would mean a stab in the arm and a fight to get enough to fill the proper tubes. Why go through all that when I have a port?

I sometimes wonder just how much blood they can safely take from me before the well runs dry! Two tubes here, four there, sometimes both a port draw AND a peripheral stick simultaneously - just to make sure. But without someway to see what is going on, there would be no way to treat intelligently.

Wouldn't it be nice if someone developed one of those cool sci-fi gizmos that you wave over a person and it tells you all you need to know? No sticking of needles, no ports inserted, no goopy scans. I guess that will be awhile coming.

Meantime, I am happy to lie still and let the nurse draw more blood from my port to make sure my levels are cooperating and rising as they should be. After hearing of the complications others are encountering, I am glad mine have been minimal! Ten minutes well spent, I say.

Floral Delights

I am gradually able to walk farther than the front stoop with Sugar. Along the side wall there is a trellis, up which greenery has been creeping most of the summer. I had thought the plants to be some kind of pole bean but had yet to see any sort of blossom or fruit growing.


The leaves were lush and the tendrils that wrapped around the wooden trellis were plentiful. But I had no particular expectations for flowers. Imagine my surprise when I managed to walk to the end of the sidewalk where the trellis stands and discovered that the climbing plant is a morning glory and the flowers were deep, jeweled purple!

They are perfect for attracting humming birds, and I half expected to see one hovering with its proboscis sluiced down the throat of the juiciest blossom.

I wondered what else might be in flower, and was happy to find dusky yellow cosmos nodding patiently on their stems just around the corner. The petunias were still wildly in bloom and had spread to overtake the entire flowerbed. Bushes were loaded with fragrant fuchsia flowers.

It's wonderful to have such beauty just a step from my front door. Even the tiny rose bush that I had thought was done for the year had little buds nodding on delicate stems, waiting to open and waft their perfume into the world. How glorious! The bumblebees agree.

Picking Up the Pieces

My doctor was very clear about not trying to catch up with everything the minute I get home. I smiled when she said it because of course I wanted to jump online and check emails and follow up with projects as soon as possible.

But she was quite right. I didn't have the strength to even walk from the recliner to the kitchen without my legs turning to lead and my breathing reduced to huffing and puffing. Wow. It reminded me of the time Drew had pneumonia and he had to sit and rest every few feet when he tried to walk. I felt so bad for him then. Now I know how he felt.

The one expenditure-of-energy luxury I allowed myself was to climb in the shower and let the water run. Ooooh, it felt sooooooo good. Bed baths are fine, but there is nothing like a warm soothing shower to help you feel warm and relaxed.

It was nice to sit up during the daytime, and the tiredness wasn't as overwhelming as it had been. But I certainly understood what the doctor meant when she said my body had been through a major illness and would take time to return to good levels.

So for today, I take it easy. I remember my physical therapy exercises, and determine to start them again. Just not today. Maybe tomorrow.

Home Again, Home Again, But Not With a Jig

My counts are up. I will be released. My RN tries to hurry the process along, but even with his best efforts, it is still noon before I sign the final papers. It takes every ounce of energy I have to get dressed. Afterwards, I sit in the chair panting, waiting for my strength to return.

I am somewhat concerned about leaving this sheltered environment, but I know I must. I am not at all sure I am really out of danger, but should anything go awry, I can call. Slowly I am stripped of all restraints - the heart monitor, the IV, the port connection.

I barely step one foot in the door when Sugar bounds to me, jumping and crying and licking and frantic. She is wriggling so hard I can't even pick her up! Poor baby. Drew tells me she has taken to licking the walls, an odd behavior. I sit and she jumps in my lap not to be peeled off for any reason. Its OK. We both rest.

It is so good to be home. How joyous to sit in a comfy chair and see live trees from the window and sleep in my very own cozy bed wrapped in Mom's quilt. Ah, much more restful. I just may be OK after all. I am not dancing the light fantastic quite yet, but I will get there.

Strawberry Ice Cream

One of the interesting activities of my restricted day was perusing the menu to see what I might be able to eat for each meal. The hospital food service offers a good selection of dishes, and even with my restrictions, there is always something that appeals.

Of course, I was a bit shocked to find that on a neutropenic diet, you can't have either yogurt or fresh fruit, including bananas because of the risk of exposure to bacteria. But I was delighted to discover that you can order those cute little ice cream cups that we used to get in high school, the ones in the cardboard cups with the pull tab lids. And they come from Byrne Dairy, an excellent local establishment that I like.

I smiled when I saw the flavor selections. Chocolate, vanilla, strawberry. When I was a girl, there were eight of us kids, and when Mom splurged and bought a half gallon of Neapolitan ice cream when it went on sale, we each got one scoop. Mom always let us pick our flavor, and it didn't take me long to discover that half the kids preferred vanilla, the other half chocolate, but no one really cared much for the strawberry.

I figured out that if I asked for strawberry, I would get a more generous scoop! What a greedy little bugger I was. Instead of having my sister's backs and cluing them in on my secret, I let everyone believe that I loved strawberry best when I was really in the chocolate camp. Mom never found out until years later.

Out of shame and humiliation for my poor behavior, I swore off strawberry ice cream for many years. But today I have gotten over my childish wickedness. Out of nostalgia, I ordered the strawberry and enjoyed every bite. A refreshing change from chocolate indeed.

Extended Stay

I am freezing. I am burning up. I try to get up, but I am dizzy. I call my nurse. My chest hurts. This is definitely not a good day. The nurse takes my temperature. "I suspected as much," he says. My fever is back. "Looks like you get an extended stay at Hotel Strong," he jokes. I laugh despite feeling so horrible. Minutes later I have an EKG and get hooked to a heart monitor, just to make sure my chest pain is not heart trouble. There is some concern over whether a murmur is the same one I had in childhood or something new.

More pills, more drugs, more belly shots (have you ever done belly shots? I do not recommend them, but the nurses here have perfected a technique of making it as painless as possible). I toss. I turn. I drag myself to the bathroom hauling my constant companion, Irving the IV pole. The diarrhea has worsened, probably due to the hefty antibiotics. Even my personal axle grease is having a hard time keeping up.

My mind wants to play What If. What if you take a nose dive and get even worse? What if your bones are so fragile from the cancer that they are disintegrating and they have to replace them one by one with metal rods, giving a whole new meaning to the moniker Iron Woman? What if I can't work and I end up living on the street? Without health insurance? What if I die?

OK, that was enough to snap me out of it. See how crazy your head can get if you apply free creative thinking to negative situations? Not that my fears are entirely groundless, but such speculation is unproductive and pointless. Besides, I learned a long time ago that God takes good care of me and he has always supplied my needs.

As for the dying part, can you imagine this presumptuous conversation with God?

"Lord, could we talk about when? I mean, really, I have to stay alive until Drew graduates from high school. It would be cruel to desert him before that, don't you agree? And it would be awfully nice if I could be there for him through college and see him at least graduate and maybe even get settled in a good job. And then, I should be there for my grandchildren and be part of their lives, maybe even for my great grandchildren.

Well, I think you can see, Lord, there simply isn't a convenient time for me to die, don't you agree? I'm sure you understand. After all, you gave Methuselah 900 years. Surely a measly 100 years for me is no big deal.

Can you imagine the audacity? For the most part, we don't get to pick when we die. We only get to pick how we live. I turn to the best cure for the What Ifs that I know - quoting every Scripture verse I know, starting in Genesis. Long before I got to Psalms, I was resting peacefully.

The Oncology Wing

Tucked away on the sixth floor, in an older part of the building, is a suite of a dozen rooms circling a care station. The rooms have an understated 80's look of warm beiges, soft turquoise and comforting cranberry. The chips in the paint, the worn linoleum, holes in the curtains and ceiling stains may show the space's age, but a better, more caring place would be hard to find.

The staff are all very sensitive to my needs without hovering or being disruptive. The techs move about their business of taking stats and seeing to the fresh water and linens gently, disturbing as little as possible if I am sleeping.

I have an assigned RN who not only comes the minute I press the call button, but encourages me to call no matter how small my question or request. There is never any irritation or sense that I have inconvenienced them when they respond, and they end every response with "Is there anything else I can do for you? Don't hesitate to ring if you need help." When they go off duty, they come in the room to let me know they are leaving and to make sure I connect with the next person who will be my RN, who also come to my room with them.

My RN's have mostly been male, a new experience for me. I find them delightful, professional and caring and not once did I feel embarrassed . We had good conversations ranging from jazz and music performance to end of life issues.

Every day I am expected to don a mask and walk the loop around the nurses' station, no small challenge. The tech walks with me, making sure my derriere is covered and keeping me steady. The loop is a beehive of interest and activity filled with doctors, residents, fellows, students, physicians assistants, nurses, techs and a multitude of support personnel all tapping away on computers or carrying on conversations or filling out charts.

My window offers a fabulous view of the brick wing next to ours, but there is plenty of blue sky and clouds. If I look between the little brick HVAC house on the roof of the parallel wing and the tan metal parapet, I can glimpse the trees and mountains that lie beyond.

Beneath my window is no grassy lawn, but a pebbled roof complete with street lights and a children's playground of pretty pink plastic which I can only see as a reflection in the opposite windows. I sit in a chair by the window, grateful for the warm sun that heats the window ledge and my naked head.

It is a slow road to recovery filled with minor bumps and setbacks. I can't imagine trying to get through this at home. Here a whole army of marvelous people are working hard to get me back on my feet. It is, indeed, an incredible journey.

Neutropena

I shouldn't be feeling this badly. It's not a crash day. All I can manage is to curl up in a miserable ball and rock myself gently in the blue chair. I am so cranky I bat Sugar away when she brings me her toy to throw. She curls up in a ball behind my chair. We are miserable together. The day passes agonizingly slowly. The ticking of the clock reverberates through my aching head. I try to drink - my mouth is drier than a dust bowl. My tongue sticks to my teeth. Water doesn't help. I am going down hard.



I finally remember to take my temperature. 100.6. That can't be right. I wait a half hour and take it again. 100.8. Crap. Anything over 100.4 must be reported. I call the hot line and speak with the oncall hematologist who tells me to go to the ER and have labs drawn.



Kiel drives me in. The ER is not hectic, but busy. I explain to the receptionist why I am there, and they don't leave me in the public areas for long. Three hours and a number of tests later, they tell me they are admitting me. What?? Turns out I am neutropenic (you have to learn a whole new vocabulary for each type of cancer you are dealing with). That means that your white blood cell count and your bone marrow counts are too low and you have basically no functioning immune system.



Rather than leave you at risk of catching something, you get isolated and pumped full of antibiotics via IV - the heavy duty stuff. The question which doesn't always get answered is whether the fever is a symptom of the neutropena or whether it is the result of an infection.



At 3am I arrive on Strong's oncology floor, 634, and am settled into a special room with its own air handling system. I still feel pretty yukky, but the IV fluids are helping with the dehydration. I want to sleep, but I hurt everywhere. I close my eyes. I can hear the clock ticking. It has a very irregular rhythm, like a train clacking across metal tracks.



I imagine I am on a trip to someplace wonderful, a place of warm sandy beaches and blue oceans and balmy breezes. I finally drift off.

No Hills

Sugar and I were on the back side of the building taking our morning excursion. Those verses in Psalm 121 were floating through my head:

I lift up my eyes to the hills—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.

So I decided to lift my eyes to the hills and check it out. I looked up, and there were no hills in sight! Just trees. It set me thinking about calling for help, and I have to say, when I need help, I don't lift my eyes, I lift my voice!

And I don't look to hills, I call for some person to help me, someone who can do something about whatever I am dealing with. I had to think about it for a bit. I suspect these verses are not talking about being saved from a sudden emergency situation, but about ongoing long term care and provision.

It's like when I look at the quilt my mother made for me - not because she expected anything in return, but just because she loves me and wants me to be warm and wrapped in her love. She spent hours embroidering forty-eight squares with beautiful flowers - iris, tulip, daffodil, rose, violet, daisy, cosmos etc., each square labeled with the name of the flowers. Then she spent even more time sewing all the squares together, lining and backing the whole blanket and tying it off like a true quilt. The colors are soft pastel, the handiwork exquisite.

Everytime I see or think of the quilt, I think of Mom and it makes me feel loved and special. My boys all feel the same way about their Grandma-made quilts! So when I "lift up my eyes" to the handiwork of my Mom, I know that she has been taking care of me all my life, providing for me, seeing that my needs are met, being my friend, someone always willing to listen to me.

That's what the Psalmist could have been referring to. When he looks at the hills, at the handiwork of God who created them, he is aware of God's provision and love and help!

My Mother knew to prepare meals before we were all starving, and to dress us in clean clothes and keep us warm in winter and cool in summer and all the other things that Mothers do for their children. She created an environment conducive to my growth, well being and happiness.

In the same way, God provides food, beauty, water, sunshine and other resources for humankind. A place conducive to our happiness and well being.

Children do not have to ask their Moms (for the most part) for lunch or clean socks or medicine. Most children are not even aware of all the things that their Moms do to provide a safe and comfortable home for them.

Sometimes we are not aware of all that God is doing on our behalf to make our world, as riddled with pollution as it is, still livable. We do not have to ask God for these amply provided stock items of life that God sends our way.

I am beginning to get some understanding of those verses. For now I am content to gaze at the trees and be happy for all they do to keep my world clean and cool!

Moving About

I am determined to get out for a field trip every day. Despite yesterday's physical demands, I have scheduled time to go to the library in the early afternoon. Morning does not bode well for getting out. I am still trying to get my feet down after the prednisone drop. Takes me longer these days to recover.

Despite feeling weak, I shower, dress, and convince Kiel to drive me in. I walk s-l-o-w-l-y from the car, wondering if it was wise to attempt a trip so soon. But I am not passing out, just weak and tired. Jello legs is not a reason to stop.

It is a tremendous shot in the arm to be in my office, to see people, to feel productive. The weakness passes. I get a second wind. Still, I do not stay a long time. Only an hour. Later I will be able to press myself, but now I am just working on not losing any ground physically.

It would be easy to get down on myself and worry that people feel I am not trying hard enough, not pulling my weight. After so long a time, surely I should be making progress and getting back into things rather than having a harder time even doing what I have been able to do.

I have to constantly remind myself that I am doing the best I can. I am not being lazy or wimpy. I find that difficult balance between pushing myself and trying to carry my own weight, and not pushing so hard that I upset the apple cart and set myself back.

Though it has been a long haul, I am past the halfway mark. Soon I will be done with the treatments and things will begin to improve. Maybe at some point I can do more than my fair share to make up for all the weeks of functioning at half speed!

Being Still

Today I rest.

I refuse to think of it as crash day.

It is restoration.

I lie still.

I do not move.

I am content to let my body work.

I cooperate.

I do not feel compelled to fuss.

I rest.

Today I allow the world to pass by.
Tomorrow will be better.

Rest.

Nap.

Sleep.

Be still.

Heal.

Thunderstorms

One minute the sky was blue and clear, the next dark and threatening. So dark that I almost thought night had fallen. The air grew thick and heavy, as if a sponge was about to shed its entire soggy contents. The television beeped a severe storm warning as the wind picked up and tree boughs danced wildly.

The sky unzipped and the deluge fell, painting the air white with streams of rain. Thank goodness I had just walked Sugar. I could barely see the cars in the parking lot through the curtain of water descending, pooling on the steaming blacktop.

Thunder cracked loud and close, followed by lightning that forked jaggedly across the sky, veins of brightness against the black thunderclouds. It was wild. It was crazy. It was refreshing. It was cleansing. It felt good even though the power went out and we had to light a bazillion candles for a few hours.

Sometimes life throws you a curve. Sometimes the change comes with darkness. Often it's packed with power and danger and unusual effects. You have no choice except to ride it out. But after it sweeps past, you feel energized, refreshed, clean. If life throws you a curve, light a candle or twenty and hang in there. This too shall pass.

Solitude

People pay all kinds of money to acquire the kind of peace and quiet I enjoy everyday. The retreat centers tout the benefits of getting away from the hectic schedule life imposes, of being deadline free, of just resting and reconnecting with the important things in life.

All this can be yours for a mere $1000 a week. Or $75 a night. Plus the costs for any additional helps you may need like a hiking guide or hot rock massages or spiritual mentor sessions.

Here I am with total peace and quiet. I almost feel guilty having such a wealth of solitude at my fingertips - and for free! Mornings are all mine. I rise when my body says get up, not when I need to get to work. The boys sleep until at least noon, so I can do whatever I wish. I work until I tire, then I stop instead of pushing through because the world will fall apart if I don't get everything done today.

I nap when I am tired, read if I desire, watch a movie with the boys, enjoy the great outdoors with Sugar, chat with Drew. What a blessing to have a life not driven. No agendas, no goals to achieve, no running from one thing to the next.

Plenty of time to consider the true importance of activities, breathing space to do something really well and completely, multiple moments to connect with the people you know and love - what's not to love about that?

Of course, I don't recommend getting cancer to acquire this amazing benefit, but I do know that you can't achieve this kind of relaxation from a one week vacation. After all, I have been at it for fifteen weeks, and I am just now realizing how great it is!

Done In

The Library is interviewing for an evening supervisor part time no benefit position, and we need to have the person ready to start by mid August. It's hard to get a sense of how someone will fit with staff and responsibilities over the phone. There is no help for it, I need to go in to work.

I am happy to have an excuse to get back inside the building and see everyone. I take my prednisone right before going and we schedule the interview for mid morning so I will be at peak energy. I poke my head in a few offices, happy to see people. I quickly catch up with phone, snail mail, and sync my cell phone with my work calendar.

I peruse the resume on my desk and the questions the staff have prepared, and before I know it, the candidate arrives. We chat, but a half hour into things, my legs turn to jello and my stomach starts churning. How can this be? I manage to make it home and sit in the chair to rest.

My prednisone turns Jeckel-Hyde. One minute I am burning up, the next freezing. My eyes weep and run, then are dry and crusty. I am starving and want to eat everything in sight, but before I can eat I am so full I feel like I am going to throw up. One minute I am yelling at poor Drew, the next apologizing. I am laughing, then crying. I ask for help then jump on the person trying to help. I fall asleep in mid sentence, then bounce so wide awake I can hardly sit still. It is a nightmare.

I finally decide to go to my room and wait it out. Up, down, up, down, bouncing from one extreme to the other. No sense dragging everyone into it. Thank God it will pass. Apparently it is not advisable to allow yourself to become overtired while in the throes of preservative drugs!

PT

What with all the lying around and napping, I could feel my strength deteriorating. I was so happy the doctor suggested seeing a physical therapist, though I must confess, I don't see how she can scrounge up enough energy for me to do any sort of serious exercising to get my muscle tone back.

I hauled myself through the door when I heard my name called, and shook hands with a woman whose face radiated sunshine and joy. We made our way slowly to the end of the hall and entered a room where a cart labeled Physical Therapy sat waiting, filled with balls and ropes and gadgets. It looked daunting.

She put me through a few tests to assess how much strength I had lost. "Push against my hand. Hold your leg up while I push down. See if you can keep your foot from being moved." Yes, I have definitely lost some strength, but nothing that can't be reversed.

She looked at my face and laughed. "Don't worry. I'm not going to ask you to run a marathon. We will start simply. Stuff you can do during the commercials when you are watching a TV show. Little things. And I have pictures!"

She was so right. We started with the ankle pumps. Every hour at the start of the hour, wiggle your feet back and forth for ten wiggles. I can do that. Once a day, while you are sitting in a chair, lift each leg up and hold it for five seconds. Do that ten times on each leg. I can do that!

When you go out to the kitchen to get a drink of water, put your hands on the counter and lift your leg to the side ten times, then do the other side. Do it to the back and to the front. Only once a day.

She gave me a handful of simple movements and suggestions of when to do them, complete with instruction sheets. Things I can do without burning up much needed energy. She guaranteed that my muscle tone would improve even with such simple exercises.

On the cardio side, she suggested a five minute moderate walk four times a week. Every week, try to bump it up by a few minutes. The eventual goal is to be able to walk for thirty minutes without feeling wobbly. I can work on that. Sugar can help if I can convince her to stop sniffing everything in sight!

I have good hope that this will fit me to return to work more easily. Meanwhile, I will try to at least take a short car ride every day, just to make myself move about more. Staying with it! Working on returning to a normal schedule. Yes!

Doe and Two Fawns

Sugar and I wandered down the stairs at 7:45 am for our morning walk, opened the door, and greeted blue skies and cool air. We took our time, wandering leisurely down the sidewalk, Sugar sniffing at grass and bushes, blops of goo on the blacktop, an inviting aroma of coffee and bacon wafting from a nearby house.

With every car that pulled down the drive, Sugar would stand stock still, watching, hoping someone would come pet her. She chased a few birds, ran a squirrel up a tree, and whined at two dogs in the yard across the drive.

We did our usual loop around the building, Sugar wandered from side to side to make sure she got to smell all the good smells and touch all the grassy areas. We were just coming down the homestretch when suddenly, a doe ran out of the wooded area between our building and the backyard of the house next to us.

She stood still for a minute, sniffing the air. I was half afraid Sugar would bark and run towards her, but Sugar just looked at her. When the doe was sure all was safe, she crossed the drive and disappeared into the woods on the other side.

I was still in awe of seeing her so close up when two tiny fawns appeared, legs half wobbly. They followed their Mom across the drive slowly and into the woods on the other side, disappearing into the lush greenery.

What an amazing way to start the day! And right in the middle of the city.

The Day After

Not so bad, this time around. I actually have energy and am out walking Sugar without feeling the jello legs. Leaving off the Rituxan piece and the drugs to control reactions seems to make a huge difference. Of course, I am on Prednisone which boosts my system, but I am hopeful that crash day won't be as crashy either.

My strength kept up most of the day, until just about 5pm. Not bad at all. And I was able to do a productive Library meeting without feeling the brain drain. I am encouraged. Plus I can see the end of feeling yucky approaching, life picking back up.

Every day I get emails about fall semester start up events. Its quite exciting to think of all the good things that will happen this year. Yes, there is still phase 2 of treatment, but the pieces will get picked up as necessary. I am in no hurry. And definitely feeling better.

Penultimate Treatment

#5 - only one more to go after this. I am still feeling a bit shaky and tired (after all, they moved up the date by two days - two full days of progress in recovering). First, a port draw. Last time that was tricky, and proved to be difficult again this time, requiring six men and a monkey plus every contortion under the sun, but we finally got blood to draw.

Then a chat with the doctor. Things look good. Blood work is fine. She is consulting with a number of specialists to get to the bottom of the iodine allergy question. My eyelashes and eyebrows are completely gone, but she reassures me they will grow back.

We discuss the next phase of treatment. After round 6, I get a four week hiatus with minimal testing.Then if deemed acceptable, a test run of the Bexxar and couple weeks of tracing the progress of the test run. Then the full blown Bexxar, followed by recovery and testing. We are talking September rest and then treatment well into October.

I am tired, not moving a lot at home. She decides I should see a physical therapist, see if we can keep the muscle tone up and not lose ground. I mention the trouble with port draws, and she prescribes a treatment to clear out any clediment that might be impeding progress.

She takes excellent care of me. For one thing she is extremely knowledgeable. For another, she not only listens carefully to my concerns, she takes them seriously and does something about them. I am getting great care.

On to the treatment. First the port treatment that takes a full hour. Thank God it works. Blood is now flowing easily and the chemo can proceed. With no Rituxan, the six hour stuff, I also don't have to take as many pretreatment drugs. Less groggy, but the chemo hits a bit harder. I am very wiped out afterwards.

But overall, a five hour day is way better than a nine hour day. Even though I am tired, its all over but the recovery weeks. Yeah! One more down, only one to go.

Dragging My Feet

Just the thought of having to go in for another chemo treatment is enough to send me diving into bed and pulling the covers up over my head. It's silly, but I just don't want to do it. Please don't make me.

OK, so the treatments haven't been all that intolerable. So I am tolerating them well. So I have already come through most of them and am still fine. So I already know mostly what to expect and how to manage any side effects.

I still plain old don't want to do it. I am balking. Procrastinating. Maybe I just need more time. A little break. Still, I am well cared for. I can do this. I just have to get geared up for it, I guess. Focus on other stuff and not think about it until I have to be there.

Sort of like when I was a kid and had to take yucky medicine. I remember once after I had my appendix removed and I was recovering at Gramma's house. My Great Aunt Lillian was a nurse, and she administered my medicine, which was bitter. I fussed about taking it, refusing to open my mouth.

She pinched my nose, forcing me to open my mouth and popped the whole spoonful of blicky stuff into my mouth. I had no choice but to swallow. Then she laughed at the face I made, but gave me something to wash the taste away. All she had to do after that was make a pinching motion with her fingers, and I cooperated.

It was enough incentive to remind me that I COULD take the medicine and that a little bitterness was not enough to keep me from getting the necessary help to get better.

So maybe I just need to find that little incentive, that little pinching motion, that little gesture to help me remember the importance of what I am doing. Maybe I just did.

But I still won't think about it until I have to!

Soccer Camp

Every August, Drew goes to soccer camp at Roberts Wesleyan College. Between my faculty discount and the generosity of his aunts, we manage the cost. He gets to jump back into the swing of things right before high school soccer training begins, gets to see how others are playing and how he measures up.

The coaches put him through his paces, but he never complains. He drags home the first day or so, his legs aching, his face sun burned, his water jugs drained. But he is happy. If I made him do all that running and exercising, he would have a fit. But this is different. He loves soccer.

I have been impressed by his perseverance in meeting the required disciplines and his commitment to being at all the events. I am pleased to see him growing into a fine young man with good sportsmanship, a level head, a sense of responsibility.

I thank his aunts for making this opportunity available to him, and playing an important role in his growing up. Besides, its not all hard work and tough stuff. He has a great time and lots of fun.