This is it.

So here we are in the last week of chemo. Adam had a treatment on Monday and his last will be on Friday. We are hoping to get down to the coast this weekend but are closely watching Gustave as it threatens the Gulf. Bad timing.

Adam earned big bucks today for "JANET'S PLANET'. Go to janetsplanet.com to see what that's all about. He acted on a kid public service ad promoting understanding of kids with serious illnesses and disabilities. How much did he earn? Well as I said to Adam, he made more per hour than either Martha or I have ever earned. A good day's work in a couple of hours.


These last few weeks have been particularly tough. Adam's mood at treatment has been difficult but I am trying to be at peace with that. He's got to do what he's got to do.

Or maybe it's just me. It's like the last mile in a 1/2 marathon. It's the hardest. If he gets enough sleep he's usually ok. Having just gone with Adam last week to chemo I have huge respect and sympathy for Martha. I will go again for his last session. Should I encourage him to say 'thankyou' to all the nurses and the doctor? I don't know.

Back in Play

I am assisting soccer coach for Adam's team this year. He had to sit out last season because he had just been diagnosed. I remember being at his soccer practice in March and realizing that he couldn't play the season and would not be coming back for anymore practices.

Yesterday's practice was pretty good. He had probably not had that much physical activity for 6 months. It was hot so I kept telling him to drink water. He tired easily but never gave up. He threw some 11 year old attitude, but nothing too deadly. His team mates who had played with him before were somewhat taken back by his appearance. One kid seeing Adam's nearly bald head, hairless left eye and general depleted condition, said "Adam, is that really you?" But soon they were off running, sweating and kicking.....like normal.

Santiago is the 'real' coach. I have known him for a few years now because our boys have played on the same team frequently. He has also been Adam's coach a couple of times before. He has always impressed me with his calm patience and ever pleasant mood. I told him I could play 'bad' cop to his 'good' cop. So I got after the boys to run a couple of laps. Adam struggled a little on this but did make it around the field twice. Santiago, who is an architect, told me he had been laid off a few months ago. Times have been tough for a lot of folks. He was considering moving and even got some offers from New York. As he checked out that possibility he realized what a great place Nashville is to live and decided to hold out for a local position. Thankfully he was offered a job with a firm that designs hospitals and other medical spaces. He was out of a job for two months and depleted his savings.

Seeing Santiago made me realize, once again, how thankful I should be to live in a great city, with so many good people I have become friends with and such excellent medical care right at our doorstep. Also seeing his attitude was a reminder to resist bitterness and depression even when circumstances push you in that direction. Santiago has 5 boys, all younger that 15, and is obviously a great example to them. I can only aspire to that.

"Man's grasp should exceed his reach, or what is a heaven for."

Adam went to school today. His temp was down where it supposed to be and he was in as good a mood as I can expect for a school morning. He may have some work to catch up on but I think getting him back in school is the best decision. I say that knowing that putting him back in school may have exposed him to whatever set his temp to over 101 two days ago. School is that important.



My CEO, Mike, just gave me two tickets to the Bruce Springsteen concert tonight!

Gotta go.

janus effect

It seems as if Adam has two very distinct personalities. One is his 'real' self. Smart, playful, fun etc. The other is his 'chemo' self. Sullen, disengaged, fearful, angry. When I was with him today at the clinic to see if he would need to be admitted due to his fever I saw both, one right after the other. When the nurse, or some other clinic person, comes around he clams up and, unless I give him a nudge, acts as if she isn't even there talking to him. As soon as they go away he is back to telling me the next funny scene that is about to be on Sponge Bob (he should know, he's seen every one of the episodes umpteen million times). It's pretty aggravating. Not that Martha and I have been too tough on the proper manners thing over the years, but generally Adam has a lot of natural affability. Well that is all drained away in the clinic. As much as I want to yell at him right then and there, embarrassed that he is treating these kind professional folks (mostly) so poorly, I breathe (yes, I still have to tell myself to do that) and wait. I gently, gently remind Adam to try and be kind but I back off quickly. He doesn't argue with this suggestion. The affable Adam agrees. But that's not the Adam I am trying to reach.

This is Adam's show. His life. And his way of dealing with this stuff. Mostly it's working so who am I to judge. The clinic folks are professionals and can take it I think.

The good news today. His fever broke. The culture is negative so far (they will continue to watch it for another two days). He will not have to be admitted. He goes back to school tomorrow. Two more chemo appts. Both are next week; Monday and Friday. And then he is done. I reminded Adam of that. He really dreads the chemo appts. Today as the nurse was accessing his port he became very upset and feared he would vomit. This wasn't even chemo, just saline to clear out the line for the antibiotic medicine. I asked Adam what was making him nauseous and he snapped at me. "The saline!" Luckily the feeling passed and he didn't vomit.

After the appt was over we went to Wendy's and then to spend some old gift cards at Walmart. That cheered him up a little until we got home and he had to hit the books to try and stay caught up with school.


Mythology lesson: Janus was usually depicted with two heads (not faces) looking in opposite directions, and was frequently used to symbolize change and transitions such as the progression of past to future, of one condition to another, of one vision to another, the growing up of young people, and of one universe to another. He was also known as the figure representing time because he could see into the past with one face and into the future with the other.

fever

Have you ever had a nightmare where you are walking down a hallway approaching the end and then the hallway begins to stretch out....the closer you get the further you are away.....or is that just a scene from The Shining?

Adam is down to his last week and a half of treatment. He had a chemo session yesterday, one is planned for next Monday and the last for next Friday. It seems like until this week he had been doing well over all. Yes he was tired easily and moody at times, but these situations seemed within limits and getting better.

Adam vomited yesterday at the chemo visit and this morning he was not feeling well. He said he was having a stomach ache. But I took him to school anyway with instructions to try and stay in school but to call home if it gets worse. Well he did have to call home and as it turns out he was running a fever. A fever is a bad thing when your immunity system is down, which his is, because what may be a normal cold for most of us can become much more serious and quickly. Martha picked him up and took him to the clinic. We were worried that he may have to be admitted but thankfully he was able to go home with more meds and we have another check in tomorrow.

Damn, we are just about there, I can almost touch it....but the hallway just stretches out.

"I am learning all the time. The tombstone will be my diploma." Eartha Kitt

3rd to last

Adam had a very busy weekend. He went on another river camping trip with his Troop. He left early on Saturday and did not get back until yesterday around 445. He then had to complete his first mini project for school; a timeline for social studies. He got it done...I think.

He went for an eye appointment and is waiting for his 3rd to last chemo today. Martha tells me that Dr. Mawn, the eye specialist, thinks Adam needs to go back on eye drops. His vision in his left eye is a little impaired probably due to dryness and swelling. Apparently because he has no lashes his eye dries out quicker. The oil from your eye lashes helps lubricate your eye. You learn something new every day. Dr. Mawn says the drops, both the steroid drops and the soothing jell drops, are necessary for another month.

Addendum: (As it turns out his chemo visit didn't go too well. Adam is now at the point that apparently happens to many cancer patients. He becomes nauseous and gagging even before getting the chemo medication. I've heard that some cancer patients become nauseous as soon as they enter the clinic. Thankfully he is almost done. I used to call the outpt chemo the 'good' chemo as opposed to the 'bad' inpatient chemo. It's all necessary but none of it is fun.)

Adam has been waking up for school fairly well over the past couple of school mornings. Getting him to bed before 9 seems to do the trick.

school week

Adam's first week back at school has been pretty good. He is just as disorganized as he was before he got sick and needs as much getting onto.....but that's ok he earned that honestly and genetically from the paternal side of the family.

He has been very exhausted when he gets back and it only took one hell-acious morning mood of Adam's to make me make him go to bed early the next night...which he did not put up a fight over. This really helped. The last two mornings he has been in a decent mood. Camille is another story....but this is not her blog!


Adam has to hit the hay early tonight as well because he needs to be up and at St. Edwards School tomorrow at 7am to meet his Scout Troop for another trip. This time they are going white water rafting out near Chattanooga (I think). Very Cool! Adam's soccer season starts next Friday with his first practice. I will be his assisting coach Santiago this season. Time to read Coaching for Dummies.

Three more treatments left....

first day

Officially summer ends on September 21st but let's face it, summer ends on the first day of school. And the first day of school was today. It was an important day at our house. Camille's first day of kindergarten and Adam's first day of real school in 5 months. I remember Adam's first day of kindergarten, he practically ran to his classroom, full of enthusiasm with no since of reluctance or anxiety. Camille was a little more cautious apparently. She held on tightly to mom's hand but eventually relinquished and walked into her first 'big girl' class room. Bright eye'd and ready, mostly.

I drove Adam to school. I always have strange feelings on Adam's first days. I guess it's vicarious, but I get a sense of my own past first days back at school: basically the feeling of fear. Adam was a little anxious this morning, but I think that had to do with being out since March, not getting very good sleep and his eye giving him some trouble. But it wasn't fear. When we got there I helped him carry his saxophone. He grabbed his back pack and we found out that because he was early he had to go wait in the 'before school' care area in the school gym. He walked right in, told me good bye and found two guys he knew to sit with. And that was that. My own fearfulness continued inexplicably. Adam's experience of grade school has flat out been better than mine and that is important to remember. His feelings are his own, as will be his memories, regardless of being sick. Driving on to work I wondered if he would find the same acceptance he received when he got diagnosed last spring. Would he get comments about his only barely there hair? Would he get comments about no brows or lashes? Or just about his, now seemingly obvious, lack of energy. Second guessing myself as to the appropriateness of getting him back into school before the end of treatment I arrived at work, got out of the car, and entered the hospital. It's Monday, time to work.

As it turns out I had nothing to worry about. Adam had a good day. Hooked up with some old friends. He's fine.

He had a chemo visit today. This included a medicine that makes him nauseous and he did vomit while in the clinic. But he's ok now and ready go back to school tomorrow. He will be teaching two of his school mates how to take the bus home after school. He's a pro.

more wedding pictures

Eddie with Adam and Rayce
That's right, Martha is dancing with me
speaks for itself

Groom's side

man makes plans, god laughs

Adam and Camille both went to their respective school orientations yesterday. Adam's was the same as last year. A quick tour and run down of the classes, and a talk by the principal. Camille's was a 'popsicle' social. She was cautious and clingy at first but warmed up after a while. Both start school on Monday.

I told Martha that I was very happy we were about to get back into a school schedule. Martha reacted appropriately. "You think you're happy..." Oops, I had momentarily forgot that it has been Martha dealing with Adam and Camille all summer. She has stayed home with them, missing work, or worse, taken them to work with her....missing work. And believe me, these two together can drive you nuts. Martha has done just about all of it. Taken Adam to weekly chemo and daily radiation. Dealt with all the day-in and day-out tasks. What she has done is really incalculable and she has never complained and she has not made me feel guilty for not being as involved as I would have liked. I guess I owe her dinner....or something :)

Adam would normally have been involved in camp, going to stay with grand parents and this summer just plain hanging out in the 'hood. But that's not what fate/god/creation had planned. The summer has not been as awful as it could have been to be sure. If you ask Adam he will glibly say he has had fun...but given a chance to think about it and a much different response will arise.

My own hopes for Monday are probably naive: the re-start of regular life. But the universe is likely to laugh at that one. The big cosmic HA! Adam still has a ways to go, even after treatment ends. More imaging, more check-ups, the eventual removal of his port-o-cath. Putting Adam back into school now is our choice and we have received some advice to the contrary. Adam's social worker suggested that he may still be too easily fatigued and not ready. Obviously we disagree. Our thinking goes something like this. Yes Adam is easily fatigued and that may have some effects on his performance. But, and this is a big 'but', we think the opportunity to get Adam back with his friends and in an intellectually stimulating environment is worth the risk. We've done our best to keep life normal during cancer treatment but that is actually impossible. Getting back into the school life (he's been out since March) will not only help Adam but Martha and me too. We could be wrong. Who knows, we may have to pull Adam out of school again. He may perform poorly academically....but I doubt it. I think it's the right decision.

I know he thinks so.

Ah, summer, what power you have to make us suffer and like it.--Russell Banks

Memphis 100 degrees at the Zoo

nephew Cole-man none too happy: L to R

Camille, Peter, Gil, Adam, Dad, Coleman

look sharp

getting ready
hanging out
look sharp
mom to the rescue
dynamic duo

Back from Memphis

Memphis was hot! We walked on Beale Street, went to the fabulous Memphis Zoo and visited the Fire Fighter museum right around the corner from the hotel. Otherwise we tried to use the pool as much as possible. Did I say Memphis was hot! Reminded me of New Orleans in many ways.


Eddie and Lauren's wedding was beautiful and Adam did a smash up job as ring bearer. I will get pics on the blog asap. All of Martha's siblings were there except for John who is dealing with cancer as well. Adam and Camille drove up with uncle Fred, aunt Dee and cousin Peter. It appears they behaved themselves and survived Fred's bat out of hell driving.

This was Eddie and Lauren's time but Adam received plenty of support and love from the whole family. I thought Adam looked great, especially in his tuxedo despite the too tight shoes. Over all he seemed healthy and acted as a 'normal' eleven year old would (meaning I only had to get on to him a few times especially right after the wedding when the pictures were being taken and taken and taken). Eddie looked sharp and Lauren's gown and veil were beautiful. Inviting Adam to be part of their wedding is something that we will always appreciate.

The reception was nice. Good, danceable music. Martha tried to get Adam on the floor but he was having none of it. Camille on the other hand couldn't get enough. She is quite the ham and has some pretty good dance moves. I told Adam to go request from the DJ songs by the Beatles, the Who and the Rolling Stones and that he would get 5 dollars per requested band. He must have been persuasive, I owe him 15 dollars. Martha even danced......twice!

After today Adam will have 4 more chemo sessions. School orientation is on Wednesday, and real school starts in one week (for Camille too). Adam has another scout canoe trip in a couple of weekends and soccer will be starting sometime in late August. Adam is ready but still gets tired easily. We will just have to manage that as he slips back into regular life. Ready or not here we come.