Click on picture to read Chaco's poems

Monday, November 30, 2009

Pine Grove, Penn.

Short update: We are in Pine Grove,PA., a place we had hiked into while on the AT in 2008. Found a discount coupon for the Comfort Inn while eating at McDonald's tonight. Sheila is tired and coughing alittle more so we only went about 300 miles today. Will still try for Birmingham, AL tomorrow. Rain all day, enjoyed driving through the Bronx, the George Washington Bridge and even stopped in Delaware Water Gap and set foot on the AT! Took a pic of Sheila near an AT double blaze! Nice to be FREEEEEEEE again!

Chaco and Toesocks On the Road Again!!!

Well after a whirlwind visit in Connecticut and Newport, RI with all my family from four generations we are back on the road heading toward Alabama to visit Sheila's sister Nancy then on to Dallas. Thanksgiving was just unreal and will take a very long time for all the memories from that day to begin to fade. We saw so many relatives from all over New England and Florida, many who have not seen each other since they were small kids! It was just fantastic! Staying in our old family home and sleeping in my childhood room was just icing on the cake! Thanks to EVERYONE who made this trip so unbelievable! Walking in the WOODS with Sue and her kids and dogs, watching Deb ride her horse , hiking with Carol and Scott on that new trail and having dinner and REIKI at sister Imp's....well in could just not have been more enjoyable. We love all you guys! If a man's wealth was measured in the kind of people his sisters turned out to be .....I must be freeking Howard Hughes!!!!

Picture above is sister Imp's license plate....and I DO BELIEVE!!!! I believe I have the BEST sisters in the world!!!!

Saturday, November 28, 2009

Newport Keeps Getting Better


Thanksgiving at the old house with all my sisters and all their kids and our Uncle Robert was out of this world! The food was outrageous, the house was overfilled with about 30 people, dogs...LOTS of dogs, good cheer, funny stories, sad stories, remember memories and lots and lots of food! Everyone brought something to eat. There were TWO turkeys, one cooked here at 705 by my sister Deb, another cooked by sister Carol's boyfriend Scott, sister Imp's boyfriend Bob cooked several pies, brownies baked by Beth Allen who stopped by to say HI and grew up with us just two doors down, beer and wine by Uncle Robert who came dressed up as an Indian. It was just a mob of people who have not been together in a very long time, noisy, unruly, unorganized confusion of people with dogs running throughout the house, one table full of food collapsing into the floor and just the best damn time imaginable!! Thanks to all my sisters who pulled together to bring all this food, fun and family together after all these years!!!

Monday, November 23, 2009

New Haven/Newport.....WE HAVE LIFT OFF!!!!!

Today is Sheila's birthday!!!! We just got home from running around town, to the doctor, to the pharmacy, to go out to eat, back to the pharmacy.....WE GOT THE ALL CLEAR TO LEAVE TEXAS FOR THANKSGIVNG!! The blood work was all good, the doctor took her CVC out and we do not have to be back for ANYTHING until December 9th! On the 9th Sheila will have a bone marrow biopsie to determine what, if any future treatments are needed. So look out New we come!! We cannot wait to see all my family again and spend Thanksgiving in the old house we all grew up in.

Saturday, November 21, 2009

Two Days and A Wakeup!!!!

Just got to the hospital by 11AM for Sheila's two units of whole blood. We started the day at 10AM at the Parks Mall Carousel for her grand DAUGHTER'S birthday party. I had to correct my error on yesterday's post because I said it was her grandson's party. I thought that because we just received the birthday gift Sheila ordered for HIS birthday just the other day. We had to leave the party early because we had to get to the hospital. At least we made this one, Sheila just missed another granddaughter's birthday party last month because she was getting platelets. We have NO treatments tomorrow and then Monday we see the doctor for blood work and to see how long and IF we get to travel to Newport on Tuesday. Talk about taking it down to the wire! I think we should be OK because her white count is climbing now and she has had platelets and whole blood and she feels good. Sheila has had a few rough nights due to bone and joint pain but that is only the nuepergen shots causing that. Once those shots stop so will the pain.

Party Pics>

Friday, November 20, 2009

Blood, More Blood and Birthday Party Tomorrow

Well today we went to the Cancer Center and had Sheila's blood work done and her white counts are at 3.3 (they were just .3 on Wednesday) , so they are looking pretty good for flying the hell outta here on Tuesday!!! Her red counts are still low though and so tomorrow we go to the hospital to get TWO units of whole blood! This is bad niews because Sheila has her grandaughter's birthday party tomorrow at the same time. When we got to the house she called and had her transfusion postponed until 11Am so we can go to the party first. So its the party at 10 and then blood at 11. This should work out OK.

Thursday, November 19, 2009

Congrats to Sister Imp....She Got the Vet Tech Job!!!!

While sitting in the hospital's blood room getting Sheila topped off with platelets so we can go home to Newport on Thanksgiving we got a call from my sister Imp (Christine) and she told us that she got the Vet Tech job she had been hoping to land!! She has been volunteering at a Wildlife Rescue , working at Ruff Life (a doggie daycare), adopted a rescue dog of her own, and working toward getting her Vet Tech credentials. CONGRATULATIONS IMP!!! They could not have hired a more dedicated person to help care for animals!!!!

Wednesday, November 18, 2009

Mikey and Greg Go Home Tomorrow

Today we went to have lab work done in addition to Sheila's neupergen shot and antibiotics. Her counts are SLOWLY coming back up and she needs platelets so tomorrow we go to the hospital to get platelets. Then Friday another set of labs and on Monday we see the doctor. Hopefully he will tell us that we can travel and how long before we have to be back. Also Mikey and Greg are doing better and they are OK'ed to travel home, so tomorrow they get on the road back to their ranch in Kansas. They have not been home in over six months! So all is all things are starting to look up for NOT having to spend Thanksgiving here!

Pic today is of our kayaks on Winstanley Island in the Tongrass National Forest Alaska. We had stopped there to dry out at the Forest Service Cabin on the island during our one week kayak/camping trip to the Misty Fiords in 2005.

Tuesday, November 17, 2009

Getting Down To The Wire

UPDATE : Sheila

Last night Sheila had some bad back pain and was up most of the night. A long massage and some Advil seemed to help. When we got to the Cancer Center today we told the nurses about the pain and as we already knew the neupergen shots she has been getting daily have a side effect of intense pain in the joints and bones. The plus side is they are supposed to help get her white cell count to come back up. Since we got home she took half of a pain pill and went to sleep.


I just got off the phone with Dan and he sounds like he is doing great. He went home on Sunday from the hospital and tomorrow goes right back to work. He is sore and black and blue where the inserted the catheter in his leg to run the stints near his heart. I am surprised he went home and is doing this good this fast. Technology is amazing!

Monday, November 16, 2009

New Week-Repeat of Last Week

Today we saw Dr. DiStefano and his plan now is continue Sheila on Nepergen shots and antibiotics all this week because her counts are still low. He thinks they have bottomed out though and hopefully will start back up this week. She is to have lab work on Wednesday and Friday to see if the counts improve. Its going to be right down to the wire about knowing if we can travel to Newport. He thinks it will just work out that we can fly out on the 24th.

Saturday, November 14, 2009

Dan the Man Goes Home

After we finished with the Cancer Center today we called Yolonda to find out how Dan was doing. She said he was feeling good and waiting to be discharged. WOW, he really dodged a bullet on that one. In the hospital for intense chest pains one day and sent home the next after having two stints placed in his arteries! I am so relieved he is OK. We just came home from Cheddars where we had lunch and are going to relax at the house today. Nothing new here except trying to make sure we are able to fly to New England for Thanksgiving. Sheila is wearing her surgical mask when we go out and trying to avoid any crowds and are using Germ-X like there is no tomorrow. We just have to get her blood counts up to normal so that we can get out if here on the 24th!

Friday, November 13, 2009

Brother Dan Dodges a Heart Attack!

Well today while Sheila was receiving platelets at Arlington Memorial Hospital we got a phone call from Yolonda telling us that Dan was in the ER at Mansfield Methodist Hospital. He was having chest pains all night and agreed to go to the ER the next morning. By the time we got there they had him getting 2 stints put in due to the blockages they found during tests. Luckily the doctor said he did not have a heart attack but was very lucky he got into the hospital. When we left he was doing fine and cracking jokes about quitting smoking for sure this time! I sure hope so.

Not Many Miles Out of Last Fillup....In for Platelets Today!

Right now we are at the Hospital's Blood Room getting Sheila 2 units of platelets. We knew yesterday that she would need platelets because yesterday the nurse scratched Sheila when she gave her the nupergen shot and it was still bleeding last night! So after the lab's blood work came back they showed she needed platelets....big surprise! The hospital orders said, under, "when needed"...NOW! So here we are getting the platelets we knew yesterday she needed.

Thursday, November 12, 2009

We Care House Preparing to 'bug out' for Thanksgiving

We went to the ACC today as usual for Sheila's antibiotics and nupergen shot. Tomorrow we have lab work to see if her blood counts have bottomed out yet. I think they probably have and she is wearing a mask now when she goes out just to be on the safe side. No other treatments are planned as yet but i think she will probably need more blood or platelets before the counts return to normal. Tomorrow we will know more. Mikey and Greg have been having a rough time of it lately but today got good news from the doctor and it looks like they will make it home to their ranch in Kansas for Thanksgiving. This is fantastic news because they have been here so long without being able to go home. Josh and Leetha are here but keep mostly to themselves in their room so we don't really know how they are doing. Everyone hopes to get out of here for the holiday though. Sheila is feeling quite good since she got the whole blood and that should only get better as long as she doesn't have to endure any chemo. So far things are looking good for everyone to get home!!!

On another note two of my sisters (Christine and Sue) have adapted dogs recently even though they both have a dog or two already. I know that the two dogs they rescued are very lucky to have found homes with them!! Here are some pics of Sadie and Cali

Sadie needs a good home!

Sadie safe and happy at home with Ruger

Cali also needing a good home

Cali safe at Sue's with Chase!

Wednesday, November 11, 2009

In for a Fill-Up!

This morning we went to the ACC to have blood work and antibiotics and Sheila's nupegen shot, then on to the hospital to get her TWO units of whole blood. When we got to the hospital's infusion room (The Blood Room) we were the ONLY ones there! We told the head nurse that we were SUPPOSED to get blood yesterday but were told by the oncologist's nurse that Tuesday they were "booked up" and we would have to wait until Wednesday for blood! The nurse then told us that the have been SLOW for days!!! They don't recall anyone even checking with them to see if Sheila could get in on Tuesday!! This really pisses me off! If you don't stay on top of things you WILL get jerked around.....and this IS one of the best cancer centers in the country!! I try not to be a total jerk when dealing with Sheila's medical needs but with few exceptions many of them just don't know what the hell they are doing or don't care! I am used to dealing with this kind of stupidity and apathy when getting my car's oil changed or waiting to be served in a restaurant but will not get jerked around again. After so long a process of getting treated everyday I guess I got lulled into a false sense of security that by now they KNOW what exactly Sheila needs when she gets there each day. This is the SECOND time they have dropped the ball and I have went blindly along....this will NOT happen a third time! I feel sorry for the cancer patient who goes it alone during this long process because they should not have to second guess each procedure while feeling as bad as many of them do while going through this treatment. Right now we are still in the hospital blood room and Sheila is on unit (bag) number 2 of whole blood. She also had lab today before we came over here and I am making sure they get the results over here before we leave. I will not get Sheila halfway home and they call us to come back because her platelets are low and she needs another infusion. I would think that that would happen automatically but the nurse said she wouldn't count on it. So we will wait and see if the results make it over here........I know it is ALL THE WAY NEXT DOOR!!!!

Tuesday, November 10, 2009

Running on Empty

This morning after IHOP we went to the ACC (Arlington Cancer Center) to have Sheila's daily infusion of antibiotics and a nupergen shot. She is really worn out due to lack of hemoglobin in her red blood. No red blood cells means she is not processing oxygen and she gets winded just walking around. We normally would have been to the hospital for whole blood but they are booked up and we cannot get in till tomorrow. Once she gets the whole blood she will perk right up and start improving, at least related to her energy levels. Her counts will continue to drop further for at least the rest of the week and I am sure we will be back to the hospital to get her some platelets before she rebounds from this last very powerful dose of chemo. It is called HIDEK (not sure of the spelling) but it is about 60 times the potency of the regular rounds she had in the beginning. We also found out she has subtype M-2 AML and at least that isn't the most devastating subtype to have and it has a slightly better than average prognosis for a recovery. We have met a young guy who has subtype M-8 and it does not respond to chemo so he is right now undergoing radiation and a bone marrow transplant. I hope he makes it!

Sheila is resting now and I am doing some laundry before going to meet my daughter Ashley for lunch. She is also returning some clothes she had of mine in storage and I could use them because we don't have much here with us. Most of whaat we own is still in my car up in Connecticut! Hoping to drive the car back to Texas after we visit my family in Newport for Thansgiving. Things look like they are working out as far as making it up there, all we have to do is get Sheila strong enough and get on the plane! My sister Sue is having new tires put on my car and I can't thank her enough. I planned on putting new tires on it after we finished the trail and moved to Virginia. I know they were getting bald and have squeezed every possible mile out of them. Thanks to Sue and Mike for taking care of this before we get up there!

The pic today is Sheila at a unique shelter on the AT. It is an AT Caretaker's converted garage in his yard just down the street from where the AT crosses a road. The Caretaker is a volunteer who lives in the house and maintains the shelter, the house and the yard. He also takes care of the hikers who stop there for the night. There were showers and toilets and even rumors of ice cream, although he had stopped selling the ice cream on the "honor system" for obvious reasons, by the time we came through! THAT was a BIG disappointment!

Monday, November 9, 2009


Today we went in to see the oncologist Dr. DiStefano and after looking at her blood work said although her counts are in the basement they should come right back up just as they have done all the times before. He plans no more chemo! At least not in the near future. The plan now is to let her counts come back up with the help of antibiotics and nupergen shots all this week and blood work on Wednesday and Friday. Then see the doctor again next Monday. At this time he does not see any reason we shouldn't be able to travel for Thanksgiving!

Pic today is of Sheila looking down into Lehigh Gap in Pennsylvania after climbing all the way to the top during our 2008 AT Thru-hike.

Sunday, November 8, 2009

Zero Day

Today we did nothing except went out to eat breakfast at noon at IHOP. Sheila is feeling really tired and run down and has spent the day just resting in bed and sleeping. Mikey and Greg are in the same boat today and have spent the day doing the same with Greg sleeping and Mikey watching football. Greg has been having a rough couple of days with alot of pain. So it has been extra quiet around here today with everyone mostly staying in their rooms. The other couple we have had here from time to time, Josh and Litha were here for a few days and have gone back to west Texas until sometime next week. Tomorrow we go to see Dr. DiStefano and to have blood work done. I guess next week will be like all the others after a round of chemo with Sheila getting whole blood and platelets and antibiotics. The main thing we are hoping for is for her blood counts to come back up in time to go to Newport. The other thing we hope is that this will be the last round of chemo like the doctor has eluded to. We will know more next week!

Saturday, November 7, 2009

Last Round of Chemo Completed!!

Well today we had Sheila's last round of chemo with her backpack disconnected and hopefully it will be last we see of that contraption! Next time she dons another backpack it will be while hiking a high, wild and lengthy trail of the Appalachian variety!!!! I HOPE!!! Anyways that's the plan. We go back to the doctor on Monday to have blood work done and I am sure will do the same every three days or so until all her blood counts come back up to normal. I hope that's the way it works out. It is so hard to plan ahead and we have seen many other patients thrown wild curves by the cancer and/or the treatments. Sheila feels good but is a little tired and run down by the chemo and also the eyedrops she has to use have a side effect of lethargy. Today after the cancer center I raked leaves up in the yard and then went and had lunch with my brother Dan at El Fenix. I had a good visit with Dan as Sheila stayed and rested at the house. Tonight Mikey made us all dinner and right now we are sitting out in the sun room relaxing before devouring the peach cobbler she also made.

Friday, November 6, 2009

Slackpacking Today!!!

Today Sheila picked up her slackpack at the Arlington Cancer Hostel. Since today is our last "scheduled" day on this Leukemia Trail (hopefully!) we will only carry it till tomorrow when we summit Blood (count) Mountain. This trail has been very much like our last great adventure thru-hiking the AT. We have met many people on this trail, some we saw almost everyday and others only now and then as they either hiked ahead or fell behind us or off the trail altogether. Our backpacks weight has varied from time to time depending on how far the next resupply point was. We have used far more hand sanitzer than we did on the AT trying not to pick up any "nasties" from other hikers or the "townies". The food generally has been poor and we have been subsisting on whatever we can pick up along the way prefering as we did on the AT not to cook! We have not had many zero days on this trip trying to complete this thru-hike as quicky as possible. Most of all just like the AT hike it has been about the people. We have met many great people on this hike who have stopped to help us along the way. Some offered shelter, others made sure we got a good meal before heading out on the trail again! Ours plans after we summit tomorrow is to rest up and get healthy enough to make it up to the now famous Thanksgiving Day Hiker Feed in Newport Rhode Island. Fellow travellers from all over the country are expected to make it there this year! We hope to see everyone there!!

Thursday, November 5, 2009

Home Stretch Tomorrow!

Tomorrow (Friday) we go to get Sheila's LAST day of scheduled chemo! She will get her chemo pack installed and it will run until Saturday morning. Then on Saturday we go to have it disconnected and it is ALL OVER! Well at least for awhile. Then we wait to see if all her counts come back up on their own. I am sure she will need whole blood and platelets like all the other times after chemo, but if her counts check out OK in the 16 days we have before we are due to fly up to Connecticut...WE CAN GET OUTTA HERE FOR THANKSGIVING!!!

Wednesday, November 4, 2009

Sold Old Sleeping Bags.....Sheila Got a New Backpack

Went to the Cancer Center as usual today to get Sheila's second chemo backpack hooked up today. Back tomorrow to take it off, then Friday back on for the last day of chemo. The last day EVER we are hoping! The next step is just to get her blood counts up enough to travel to Trumbull and Newport!! Sheila's hair is still trying to grow back and I have even let mine get as long as hers.....about 1/2 of an inch! Today I finally put on Craig's List a couple of sleeping bags we have that we don't need.. We have 7 sleeping bags total and it was time to get rid of some stuff! The ad was on Craig's List only about 15 minutes before I got a call. A lady and her husband heading to the Grand Canyon came by tonight and bought both bags. That Craig's List is amazing for getting rid off stuff quick!

Monday, November 2, 2009

A Day at The Cancer Center

Sheila sweeping the patio at the WE CARE house
(note her new chemo backpack)

Today we got back to the daily grind of the Arlington Cancer Center. First we went to the lab to get the tubes for Sheila's blood work. We will not let the lab draw her blood because she has a CVC line and I don't want them sticking needles into her when they can just draw it out of the CVC. Well the lab is not certified to draw blood from the CVC so we just pick up the empty tubes for the blood samples and take them to the Infusion Center next door. The Infusion Center can draw the blood samples but then we have to takes the now filled tubes of blood back to the lab for the testing. I think it is a small price to pay for avoiding all those needles! Remember that just one needle stuck in her arm back in New York cause a massive infection and alot of grief for both of us! Next we went upstairs to see Dr. DiStefano after waiting more than an hour for the blood work results to get over to him. He said all Sheila's counts are great and chemo would start back up today. As I type this we are back at Infusion getting her premeds infused so they can hook up the chemo pack and send us home. Mikey and Greg are here today also and he is in alot of pain since they temporarily took him off chemo so he could build himself back up. His legs and feet had swelled up so much that he could not even put shoes on and had to use a walker just to get from the house to the truck. He is one tough guy and like me has a major problem letting other people help him for ANY reason. I guess it's just a guy thing! Mikey and him finally just had a weekend with no treatments and wouldn't you know it, he started to have alot of pain. They start chemo again tomorrow and maybe that and some pain meds will help him. At least his swollen legs and feet have gone down somewhat. Sheila and I have been very lucky in that she has not had any of the serious side effects or radical treatments many of the people here have been through. We have been VERY lucky, compared to most of the people we see here at the Cancer Center, Sheila comes and goes pretty much like a healthy person and except for the bald heads (hers AND mine) you wouldn't even know there was anything wrong.

Picture Today: "A top notch looking couple" an elderly lady called us as we resupplied during a town stop on our AT thru-hike. Here we are in Damascus, Virginia during the three day celebration called TRAIL DAZE. Twenty thousand AT hikers from past and present attend the festival and the whole town comes out to throw water balloons and spray garden hoses at all the "smelly" hikers in the Annual Hiker Parade!

Sunday, November 1, 2009

Chemo Tomorrow (Hope it's the Last One!)

Tomorrow 9AM (Monday) we have to go to the Cancer Center for lab work, which I am sure will be all good thanks to a week off. Then at 10AM we go to see the doctor and should be scheduled to start Sheila's last "planned" round of chemo. If all goes as planned she will get some premeds then start a backpack full of chemo to run one day. Then on Tuesday the backpack will come off. Wednesday another day of with the backback and off for Thursday. Friday it should run for one last day, then lab work every 2-3 days to watch her blood counts come back up. We are hoping it will all come back quickly enough for us to fly up north for Thanksgiving.

Pic Today: Tents on the Appalachian Trail 2008