Greetings!
Hard to believe more than a month has gone by since my last note.  October was a busy month but mostly unremarkable.  Had another MRI. Survived--without pushing the red button.  Had another Mammogram--October is Breast Cancer Awareness month so lots of other women also were there.  Had an Ultrasound of my thyroid--so simple I wish all tests were as easy.  And that's about the size of it.

It's been a year since my diagnosis and first surgery.  I AM SO GLAD IT'S OVER!!!  I am very excited to report that all my tests are coming back with good reports.  I will see the Oncologist just before Thanksgiving and let you know what she says.  I expect she will tell me I'm in remission and to keep doing what I'm doing.  (Yes, if she tells me otherwise I will let you know.)

My hair continues to grow.  And it continues to be curly.  I'm actually thinking I might need to get it shaped in the very near future. But I do like these curls--so easy to take care of!  To answer your questions: Yes, it's still gray and yes, people think I'm old and yes, I am thinking about coloring it.  I'll let you know...or maybe not--you'll just be surprised to see me as a redhead!!!

If you've been following along you know the past year wasn't horrible (or maybe I've already forgotten all the bad parts) but now I am getting energy back and doing more things.  Funny how I did not realize that I wasn't well--I should have known that just because one turns 50 does not mean one needs a daily nap.  One thing that happened recently is a cloud lifted and suddenly I saw all the dust that has collected over the past year in our house.  There are also projects left mid-air calling to me.  I'm starting to work on them and trying to figure out how these dust bunnies keep sneaking in.  Oh, one funny thing I asked Bob about Halloween and whether we even gave out candy to the trick-or-treaters last year.  Most likely I was recovering from the first surgery and slept through it.

It stays so dang hot in Phoenix for so long that we have found real respite in the cool pines.  I convinced Bob to get a wood permit last month so we've been out searching for dead and down oak to cut for the fireplace.  You can see Matthew showing off his woodpile.  Bob is the official cutter while Matthew and I are loaders.  We've all decided it is really good exercise and it's so cool in the mountains that I tolerate it better.  Even if we don't burn all the wood this winter we enjoy getting away.  And we are becoming real connoisseurs of wood--purveyors for the particular piece, if you would... ah the puns...  But I feel smart that I can now recognize a piece of downed oak by the bark.  Still have some trouble with barkless juniper but the smell always gives it away.

Last week Matthew and I tackled the flower bed in the front yard.  It was a bigger job than I expected; the grass had grown thick around the rose bushes and other plants so I decided the heck with it and dug everything out.  Pulled out all the grass, dug down as deep as I could in our caliche soil and took out as many roots as I could find.  Then I shoveled and shoveled turning the dirt and adding some good mulch.  (Don't be amazed, this took us days.) And finally, this morning, we bought new plants and put them all in.  You know, this sounds like a metaphor of my past year: a rather neglected body needing surgeries, treatments and now recovery and new growth.  Well, I expect like the plants, with a little water and TLC we should all be just fine.

A Day with Matthew

Matthew & the Marines

My note last month about life with a special needs son certainly brought in the comments. Most people haven't spent much time in close proximity to a handicapped person. And apparently, a lot of our life challenges are not obvious to the casual observer.

I'm sure I've said this many times but Matthew does best with a set routine. Maybe you do too, but most likely changes in your routine aren't enough to cause a meltdown like they can Matthew. Most likely you are also able to walk away from something that has your attention with more ease than Matthew. To better imagine why not share a day with Matthew with you?

Like many we get up the same time each day. We begin by making sure Matthew gets his clothes on the right way...fortunately, he finally has figured out that his shoes feel better when on the right feet. But pants on backwards is a daily question. Then Matthew runs down to his computer to begin playing his favorite game. Given the opportunity I think he'd be on  his computer 24/7 so long ago I got smart and found a program that has time limits to access the computer. For example, it comes on at 8am and takes a 15 minute break at 10. There is a funny little wizard that pops on the screen and reminds Matthew that he should go to the bathroom. He is also reminded to eat breakfast. If I want to go some place Matthew checks to make sure his computer is paused at the right spot. He has played the same game for years and has it well memorized.  I like the computer timer because when it takes a break we take advantage of the time and do our chores, taking care of the wash, vacuuming, dusting, and the like.

Picking and Eating Strawberries

When we run an errand it's important that I tell Matthew where we are going. He pays attention to every detail and most especially if he thinks we are supposed to be going home but make a wrong turn. I still can lose him in a store but he has never left a building and I've learned to look first in the video or toy area. I think it's important to get out and do things regularly, if not daily. These changes to the routine seem to keep Matthew from becoming too set in his ways.

In the afternoons, when we're home, Matthew will often decided he's hungry.  Fortunately, he has stopped hiding the open ice cream carton (with spoon and that I would not find until it was all melted). If there is soda available he will drink it... all... If there are bananas he will eat them... all... I've seen other autistic kids with these tendencies.  If one piece of sliced cheese tastes good then why stop until it's all gone? So we've moved the soda into the locked bedroom and buy bananas in small bunches. 

Sometimes friends will come by and suddenly the boy who was glued to his computer becomes "Chatty Patty".  Matthew has figured out that he can show others his trusty and well worn TV Guide and have whole conversations without him having to utter a word.  He'd like to also show off ALL of his movies (but they are locked in that same room as the soda). 

Emotions are a challenge for autistic people and certainly for Matthew. He has a difficult time when special people come into the house. He often hides his face or, if it's someone like Grandpa, he runs and hides. As best I can tell it's the feeling that you have when you haven't seen a loved one in some time. It's a powerful emotion to be sure and one that Matthew has trouble handling. Fortunately, as soon as he's redirected he'll run and greet the person. I have to laugh though because it's a little harder when he sees one of his favorite TV hero's. He'll actually run out of the room while I'm yelling at him to hurry back and watch before he misses seeing the person.

Matthew & Grandpa

Meals, while not a challenge, are not quite the same as in other households. We eat gluten free which means mostly that we don't eat any wheat.  Remember the bananas story? Well, the same holds true for non-gluten free foods that might be in the house so years ago we eliminated the temptations.  Oh, there's still the odd loaf of regular bread but only because Matthew has a GF option that is as good or better tasting. Cake, cookies and other desserts are only gluten free. The good thing is that there are now many more options and we have learned to bake some pretty tasty treats. That ole computer timer comes back on at 6pm and reminds Matthew that it's time for a break and to eat dinner. He is a willing helper when it comes to making something that tastes good and loves to check the progress of whatever is cooking. Unfortunately, clean up is considered a chore and not something to look forward to.

Our evening routine is most probably the most routine of all. If there is something on TV that Matthew likes he'll watch but most often he is found sitting back at the computer playing his game and listening to the show. He always seems to glance up just when I switch the channel and heaven forbid I put it on Fox News! Nine o'clock comes and the computer says good night so he can sit with dad and watch something or head upstairs. Every morning I help him shave and every evening Bob helps him get ready for bed and boy, he doesn't like us to switch roles. Every night, and I mean every, Matthew goes to bed listening to his Adventures in Odyssey tapes. Sometimes he can't decide which tape he wants so he will put one in and then switch it out, put one in and switch it out, etc., etc. until he finally finds the right story. When he was young he was also hyperactive and often would stay up late into the night. We are thankful he has moved past this stage.

In the morning we start all over again. So that's it. I was talking to my friend today who has an autistic daughter and who cares for two other autistic teen boys. While they all have some very definite similarities they are also extremely different. If you have the opportunity to talk with a special needs person do take it. You may find a person who is completely disinterested in conversation or you may find another Matthew who can't wait to show or tell you something exciting.

Living with Autism

http://specialreport.blogs.foxnews.com/2010/08/18/photo-of-the-day/
First things first. Last week I saw a request to send in unique pictures to one of the Fox News guys.  So I sent one of my favorite pictures.  Sure enough they agreed and posted it on the website.  The link should take you to it.

The photo is much more than a picture of Matthew and the soldiers.  It reminds us of a great adventure traveling to Germany.  Traveling with an autistic person can be a real challenge.  I've written about past trips.  We have learned to expect delays and deal with fatigue and impatience.  For our family the benefits of travel outweigh the difficulties getting there. But we know of families whose child's behavior outside his comfort zone is too erratic to chance an air trip. 


Life with an autistic child and now adult is something most people can't begin to imagine. Daily stress can be huge for both the parents and the child.  There was a show on the PBS channel today Autism: Making it Work. I recommend it to anyone who knows someone with autism and especially First Responders who may need to deal with an autistic person. One segment of the program was a discussion by a dad whose son had a "melt down" in the local mall.  I chuckled knowingly as I watched, remembering some of the experiences we had with our young child... The times when Matthew didn't want to leave the store and so wouldn't get into the car and would just throw himself on the ground screaming... and then there were the times Matthew didn't want to go into the store and would throw himself on the ground screaming... Yuck.  Oh, the looks from people.  A more serious thing happened when Bob and Matthew were out jogging in the neighborhood and Matthew decided he didn't want to continue.  As they were arguing a policeman drove up.  Naturally, the officer was concerned about the situation and tried to question Matthew.  Fortunately for Bob, Matthew immediately saw someone who hadn't seen his cool superhero shirt and began to show it off.  The officer was able to assess that it was not a child abduction.  We were able to laugh afterward but it put real fear in Bob, "Who was home? Who could he call to corroborate his story?"

Even though Matthew is almost 28 he looks young.  And sometimes he acts young too...like the day while back in the store and, for whatever reason, he wasn't  happy.  Though I tried not to make a scene another shopper thought I was manhandling him and took it upon herself to chew me out threatening to call child protective services. 

For our friends with "normal children" the teen years presented many challenges.  We went through many of the same issues but imagine them compounded by difficulty communicating.  Actually, come to think of it, maybe it was better that Matthew wasn't able to call me names or say some of the things I've heard other teens say to their moms. The good news is that everyone eventually outgrows these years. 

The autism spectrum is huge.  It runs the gamut from being non-verbal and totally introspective to minor problems when dealing with social situations.  Depending on the severity these adults may be able to live independently, complete college, and fit into society without too much difficulty.  Severe autism, such as Matthew has, does limit many opportunities.  Thankfully, we are no longer in times where everyone who gets such a diagnosis is sent to an asylum.  Our family chooses to push Matthew's comfort zone to the edge and in doing so we hope that with his horizons expanded he can live the best life possible.

There is no point to my ramblings today except to share a little insight so that your next encounter with a special needs person might be a little more smooth.

Oh, and the picture is Matthew hanging up his swim towel.  He is of the firm belief that if two clothes pins will hold it then ten will really keep it on the line.

A Noteworthy Morning

Ah teenagers...they are so independent but...on occasion they still need their parents.

Our 18 year old daughter thinks she is ready for the world.  As a college junior she is moving to the university next month fearless and without worries.  But for mom the worries continue.

But we must let go.  And so our young adult made arrangements to visit friends in PA.  I stayed out of it except to give advice when asked.  You know, like, "Remember just because it's cheap to fly the red-eye doesn't mean it your friends will want to pick you up at 6am."  So plans were made and all I did was ask what day she was leaving so that I'd be free to take her to the airport.  The friends were emailed the schedule and all was set.  Or so we thought.

Yesterday we were talking about the upcoming trip.  Rebecca was leaving Tuesday and would be talking to the friends with flight information, etc. some time on Monday.  With a little prodding she pulled out her suitcase and began thinking about what to pack.  After all, Monday was empty except for packing and picking up any last minute items.  When I headed for bed we talked about getting her boarding pass.  The closer to the airlines 24 hour window that you order the pass the better chance at a good seat on the plane (you know how it goes).  Since she  had an early flight I offered to go online when I got up, then she could sleep in a few minutes. 

Bob and I got up our usual early hour and talked about who would take her to the airport and assorted reminders to each other before the appointed 6:45 time to sign onto the website.  We've flown often enough that it was pretty routine until the website flashed in red letters "Unable to confirm this flight."  Hmmm, so I looked a little further.  Wait a second, the website information said that her flight was this morning!  Yikes!  How could that be?  I jumped up and ran upstairs informing Bob that something was dreadfully wrong.  What to do? What to do? 

Of course, the first thing to do is to wake sleeping beauty and start firing questions at her.  (What a terrible way to wake up.)  Yep, the airlines was right, the confirmation paper said the flight was the 19th, not the 20th.  Two months ago, when making reservations she must have written down the wrong date.  Okay, take a breath and lets call the airlines to see if there is any way to salvage this trip.  After being on hold for what seemed an eternity the agent finally answered.  Yes, the flight was for today and yes, it had already left, and yes, she could fly out tomorrow but it would cost an additional $250 for the ticket.  But then she asked if my daughter was over the age of 22.  Why she asked, I don't know (maybe this is the new Obama age of adulthood). But in any case, she then told me that there was a policy if a customer was at the terminal within two hours of the scheduled departure time they would get her on a standby flight that day and with no additional charge.  "Could we make it there?" she asked. 

"Could we?!" Ka-ching!  Dollar signs were flying past my head as I ran upstairs.  We raced around like crazy people getting dressed and tossing clothes into her suitcase.  "If the friends can't pick you up today or if you don't get in until midnight you're just going to have to spend the night in the airport."  Bob and I both were shouting out questions to her, "Did you pack this?  Did you remember that?  Do you have your money, your purse, your backpack?"  And we flew out of the house. 

We arrived at the terminal at 8:15 and I told my stressed daughter to hurry in and look for the shortest line while I parked the car.  A half hour in line would spell trouble.  Well, you know that old adage, "The Lord watches over children and fools."  I'm guessing we fit in both categories this morning.  As Matthew and I walked in to the terminal Rebecca was calling us.  She was booked on an 8:45 flight and with a detour to Buffalo would arrive in Baltimore just a couple hours late.



Sure enough she just sent me a text that she had arrived safely and and the friends were right there to pick her up.  "No worries, Mom," she wrote, "and thanks for getting me out of bed this morning."




 

The Road to Recovery

It's one month since my last radiation treatment.  There are sure signs that I'm on the road to recovery.

Physically, I'm looking different.  I have hair... I have eyebrows.  Both make me look twice when passing a mirror.  Strange but I got used to seeing myself without eyebrows.  The lack of hair I never got used to but scarves served their purpose hiding my head.  People ask if my hair is coming back different but sad to say, I think it will look very much like it used to--lots of premature gray (at least I'm saying it's premature...) I enjoy being able to run a washcloth over it and be set for the day.  A friend asked me what I put on it to make it stick up straight.  I'm not sure she believed me when I told her that going every which way was most likely my natural look.  Anyway, my hair is now about a 1/2 inch long so I'm still a ways from needing a haircut.

Another interesting physical change is my finger nails.  Did I tell you how they were loose and I was constantly worried about them falling off?  Both my finger and toe nails are now almost normal looking and seem to be adhered once again.  The other day I was looking at the horizontal ridges which I know are from stress.  What I hadn't noticed before is that there were eight well defined ridges.  And guess what, I had eight chemo treatments.  I bet they are related. 

Oh, you might be interested in knowing that my skin has returned to normal from the radiation.  I expected to have a deep tan like I get every time I visit my sister in NC and forget to use sunscreen at the beach.  Certainly the radiation burns on the skin were similar but they sure didn't last like a regular sun tan.  Maybe because they weren't the same type of burn???

Also physically, but not so visible is my energy is returning.  No I'm not quite back to normal but I don't need naps every day.  And guess what???  I mowed the grass last week! Yes, the whole yard.  Come to think of it, I'm not sure I had enough energy last summer to mow the lawn.  Strange how that hindsight works.  Mom pointed out how I had been complaining that I needed a nap every day last summer.  It all made sense after the diagnosis. 

I'm not sure about the whole chemo brain stuff.  It's still a challenge to concentrate on projects and to remember what was on my agenda for the day.  Some friends have told me that the brain fog lasts a year.  In any case, I'll use it as my excuse for forgetfulness and any otherwise unseemly remarks I might make.  It works.

People want to know if I'm in remission or better yet, cured.  I don't know when I'll have that answer.  I go back to the doctor in August and will have lab work done then.  The last labs with the cancer markers were good so next month's labs will have a good baseline to compare with.  I had forgotten that I'm not really, really done with chemo. I have to go back every six months for a couple years.  I know for certain this treatment is not nearly so hard on the system and I'm thinking I will keep my hair. The main thing now is that these doctors all have hold of me and will keep a very close eye on everything.  (Remember you MAY use me as your example of what not to do--ladies, get those mammos...don't wait until you are 50.)  But in any case, we all thank you for your prayers as we travel down this very different road. 

Now that we're well into summer and it's more than plenty hot here it's time to get out of town.  Matthew and I are planning to spend more time in Strawberry.  Bob already bought me some paint to I can work on the ceiling up there. (I know, what a nice guy...)  It does appear that I'm on the road to recovery and I'm sure it will be more fun up in the mountains where it's cooler--even if it is with a paintbrush in hand.

Countdown to the Finish!

Great news! Today I have five radiation treatments left. I can look forward to being done with this portion of my adventure. All that will remain is to have the port catheter removed and recovery will begin. I'm ready!

I didn't write much about the radiation therapy experience because...well...there wasn't much to say. In comparison to the side effects and length of time involved with chemo, this has been a breeze. Therapy has been Monday through Friday and I'm in and out in 20 minutes. I see the same group of patients each day and we laugh because we have our conversations in five minute snippets. Because the tumor was close to the skin surface I do have significant radiation burns--it looks like the worst sun burn you ever had. But the staff has been good about recommending lotions and pain relievers that help. For the most part the pain hasn't been so bad that I've needed anything stronger than Tylenol. Of course, it's because I'm tough... ha ha ha (don't you believe it...)

Today was my weekly doctor visit. She says that I can look forward to the effects of the radiation being gone in a month and being back to normal in three months. Hallelujah!

Do you want to know about the radiation therapy procedure? Before I started they did a CT scan and with the help of computers the physicist was able to calculate exactly what dose of radiation they should give to the tumor area as well as the surrounding and lymph node areas. The machine itself is giant and produces powerful x-rays. It can and does move 360 degrees around me. In the past the staff had to use special lead blocks to focus the beam and protect organs. Today it's done digitally using what look like fingers of lead that are moved by the computer to zoom in on the area. This week they are doing what's called a tumor boost and directing the beam just at the tumor bed. The opening, through those lead fingers, looks like an oblong egg and it changes as the machine moves. No, I am not radioactive. (Just in case you were wondering.) Each day when I go in I'm put in the exact same position that they used in the original CT scan. Turn your head, put your arm here. There are several markers stuck on me that the therapist use to make sure the positioning is exact. Then they use the prescribed therapy for the day and the machine moves and changes as set up on the computer. Before my nose has a chance to start itching I'm finished for the day. It's pretty much quick and easy.

Oh, I'm also excited to tell you that my hair is growing back. Enough so, that the family has given me permission to be seen outside the house without a scarf. Most exciting for me though is that the dark hair growth is now out pacing the white hair. Strange isn't it, how the white hair grew in first. But, no red hair or anything else unusual. I have a feeling that I'll look just the same as I did before once it gets out a few inches.

Lastly, and I almost forgot this most important news, I visited the chemo oncologist a couple weeks ago. She will continue to be my main doctor for treatment and follow ups. She was pleased to tell me that the cancer markers (which look for any spread of the cancer in the blood) have gone down. I don't think this doctor is the type to tell me I'm cancer free but she was very happy with these results.

Be listening for the cheers coming from our house June 3!

Radioactive 

Update on chemo and more

It's been four weeks since my last chemotherapy treatment. I'm getting back to normal. Taste is returning, damaged fingernails are growing out and outward signs of the chemo are lessening. Even my hair has started to grow back. As Bob told his sister, "It's almost measurable..." (So far it looks like it's 99% white but I noticed some darker hair sneaking in recently, maybe it is just slower to recover.) My advice to someone who is going to have chemotherapy is to hang in there. There are plenty of days where you want to cry (and do) and want to quit chemo but by leaning on loved ones it's doable.

At one doctor visit I found myself complaining about having to go through all this and still having odds that the cancer could return. (If I did nothing further than surgery in 10 years I have a 58% chance of no recurrence; with hormonal therapy it goes up to 72%; add in chemo and radiation up to 84% and then one more new drug will bring it up to 88%.) Seems like an awful lot of work to have no guarantee. Of course, the doctor then reminded me of the odds of not surviving things like gall bladder surgery or even pregnancy. While still not completely happy with the odds it was reassuring. If you know someone who is upset with the statistics given them remind them to hang in there. This is a fight worth fighting.

Today I have finished the first week of radiation therapy. So far this has been much easier and certainly faster. The only bad thing is that the treatments are five days a week. But the office is open early so I'm home before the kids are up. I was kind of hoping to start this therapy immediately following the chemo so that I'd be done sooner. The radiation doctor pretty much said no way, he wanted to let all the chemo drugs get out of my system. In the end a couple weeks won't matter one way or the other. So Matthew and I spent our "free time" painting and cleaning out the spare bedroom. (It took the whole time as we would work a little while and then take a break--it will be nice to get back to full energy...) But back to the radiation therapy--I am scheduled for 33 treatments so barring any complications will finish the first week of June. The therapist gave me my whole schedule so I can mark each treatment off and continue a count down to better health.