Today is mom’s 89th birthday. She hasn’t been feeling well lately. She has a lot of pain in her back and can’t stand for very long. Since we’ve been home, we’ve taken her to the doctor’s several times to try to get to the bottom of her pain and she has another appointment next week where they might fit her with a back brace. Her family doctor said that she has severe scoliosis of the spine and the vertebrae are twisting around and causing the pain. In a recent trip to the ER we found that she has an old compression fracture in her back so that probably isn’t helping either. Since we’ve gotten back to the area, we’ve taken over mowing her lawn for her. She has about an acre of grass to mow and bouncing around on the mower was not helping her back at all so we told her we’d do it for her.
My mom has always had a green thumb and loves the flowers that she has around her house. Linda and I weeded out the front bed and mulched it really well so that the weeds won’t be so bad for her, since she can’t bend over and work in them anymore. It’s tough to see her in so much pain and not know how we can help her. 
Tomorrow she is going to the casino with my sister and we’re going to have a surprise waiting for her when she gets back. We drove by this gardening place today and stopped to look around. They had this lily that has huge, dinner plate size blossoms on it and the greatest fragrance. We bought it and a purple butterfly bush to put in an empty spot that mom has right off the deck where she can see it. She hasn’t seen many of her flowers this summer, that are out in the yard, because she’s afraid to walk out there by herself…for fear of falling. This way she can see it from the deck as it blossoms and it is loaded with blossoms !
Mom thought that a new, adjustable bed, would help her get a good night’s sleep so she bought one and the guys delivered it and set it up. I think she’s spent maybe two nights in it since she got it. It’s too hard for her to get in it and get situated where she’s comfortable so she just spends her nights in her recliner. I hope that the doctor can figure out something for her this next week that will get rid of the pain and make it easier for her to get around.
Linda and I have been busy the last few weeks. We’ve trained two different teams
since being home and they are now out, working jobs and doing great. One couple is originally from Pennsylvania and the other couple is from Texas. We love helping these teams get a great start on their new career with AGS and seeing them do well. We feel 
like proud parents that send their kids out into the world to make their way.
Today Linda had to help out at the Grand Canyon Marathon, working a water station at the first stop. I went along to help out. She volunteers with a group called Haven of Tioga County, which is a group for victims of domestic violence and sexual assault. There were 600 runners signed up for today’s race but I don’t think they all showed up. Today it was a half marathon of 13.1 miles and tomorrow is a qualifying event for the Boston marathon with about 200 people running 26.2 miles. We had to get up at 4:30 and be in Wellsboro at 6:00 a.m. but we were all done by 8:00. It was a fun morning.
I guess it’s been a while since I’ve put a post on the blog. The week of July 4th, we took the rig up to Seneca Falls for Linda’s family get together. It was great to see everyone…some I hadn’t seen some for over a year. Last summer I had gone to Terra Haute, for my organic gardening internship, and 
didn’t have a chance to see many of Linda’s family. The weather was really hot and humid the first few days we were there and then we got a break and the temps dropped back into the 70’s and was very comfortable. 
Some of her relatives only come to visit once a year so it’s a special time for all of them to get together. Lots of great memories were made this summer…..
My scars keep healing and getting better. I rub some of the bee bar, that my brother gave me, on them each day to help to soften them. In the near future I’d like to go to a massage therapist and see if she can help the numbness and nerve pain. The pain has gotten much better but just the feel of material on my underarm sometimes is really irritating….just the feeling against my skin. I want to make sure that the tissue is really healed up well before I go but I think it would be beneficial. We are staying in Mansfield, at Bucktail Camping Resort, for a while so that we can be close to mom and help her with errands and appointments. She hasn’t driven since she fell at the end of May and has had frequent doctors appointments to try and get her pain under control. Life goes on and we’re rolling along, taking what comes. We’re thankful to have time with family and enjoy life.
I apologize for the delay in getting a post on here to let everyone know what the pathology report said. Most of you heard it on Facebook but the surgeon called and said that they got all of the melanoma in my arm and the two lymph nodes were clear. Wahoo ! Tears of joy flowed from Linda and I as Dr. Nicole gave us the news. We were just pulling into our campsite from visiting mom so I was really nervous and wanted to get the car parked, not knowing what emotions I might have when I heard which side of the coin the news came down on. It was all glorious and all our prayers paid off.
I asked the doctor about the numbness I have in my armpit. It’s such a weird sensation (or lack thereof) to rub on deodorant and not feel what you’re doing. She said, “Oh yeah, I forgot to tell you that you might have some areas of permanent numbness”. Wow, that’s a big side effect to disclose. She said that most of the feeling should come back but when nerves get cut, it’s hard to tell what areas will stay numb. The numbness I can tolerate…I mean, cause well I don’t feel anything there. The part that really bugs me is the nerve pain that starts about 2” from my elbow and goes almost the whole way to my armpit. It’s been really hard to explain to Linda what it feels like so she can maybe offer up suggestions for what might make it feel better. Then one night, I thought of the perfect analogy.
When I was around 12 or 13, like most pubescent girls, I was starting to get that downy hair on my legs. While it didn’t bother me, I knew that most of the other girls in my class were shaving their legs so I thought that was something I should do. I asked my mother one day if I could start shaving my legs and she said “no”. Well, it must have been at that early age that I adopted the philosophy of “Don’t ask permission, just beg for forgiveness later” (which I’ve used extensively ever since). My mom had one of those clunky, steel razors that when you twist the handle, the razor compartment doors lifted up to reveal the blade inside. I remember being mesmerized by the action of opening and closing that thing. To a wide-eyed young girl like me, it was like gull wing doors opening on a Delorean sports car and it seemed so cool. Knowing that this was back in the early 70’s, it was not a head pivoting, contour following, aloe gel covered, triple action blade razor like we now have. One blade in a fixed, non-forgiving stainless steel instrument. Those weren’t gull wing doors on a Delorean sports car. They were more like Bilco doors on a damn root cellar. So I found myself in the bathtub and this was the day that I would take that rite of passage of clean shaven legs. With that razor in my hand, I started at my ankle and drew it, in one fell swoop, up to my knee. I wouldn’t have to worry about fuzzy legs for quite some time, because that maiming device in my hand had removed every hair follicle from my ankle to my knee. You know that pain you feel when an area of your skin has been ripped raw and is exposed to the air ? That’s what the nerve pain on the underside of my arm feels like. Linda gets it now and I think, like the numbness in my armpit, it will just take a while for it all to settle down and heal. I don’t remember my mothers reaction at learning I had disobeyed her in regards to my attempt to shave my legs. Without telling her, it was pretty evident by my raw shin. I hope that she gave me some lessons on the fine art of doing it but that was many moons ago and I really don’t recall. But I do remember what the pain felt like and now I have a modern day connection to my past. How special is that ? LOL
In other news, we are spending a lot of time at mom’s house. I took her to the doctor earlier this week, because she still has a lot of pain in her hip to knee area. They x-rayed her and nothing is chipped, broken or cracked. They gave her the usual shot she gets in her hip and she’s feeling better most days. We have to remind her to do things in small batches. If you clean the whole house in one day, chances are you’re going to feel it the next day. She is really frustrated that her body is not keeping up with what her mind wants to do. I know how she feels.
Last night Linda and I went to dinner with a group of friends that I haven’t seen in maybe 15 years. It was so great to see familiar faces (I had trouble remembering names) and catch up on what folks have been doing. They are going to try and start getting together each month so we’re hoping that we can be part of that.
We are training a new AGS team this week, here at Bucktail. Anxious to work with Tim and Cindy and get them off to a great start. Hope everyone has a great week. I know we will….every day is such a blessing when you don’t have a serious health concern hanging over your head. I feel very blessed !
I don’t have a whole lot to talk about but figured I would give everyone an update. We arrived in Mansfield, Pa on Tuesday and got a campsite at Bucktail Camping Resort. We stayed here a couple times last summer when Linda spent time with her grandkids. Linda did all the driving to get here…all 1700 miles from Aurora, CO. Although I wanted to help her do the driving, it was probably a good thing that I didn’t. I unhooked the car from the rig, while Linda checked us in, and just carrying the hitch into the garage of the rig made me get really woozie and I had to lay down so I wouldn’t faint. I get tired quickly but don’t nap cause I have a horrible time getting a good night’s sleep. The area directly under the incision, on my arm is that numb, ouchy feeling like you get when you wake up in the middle of the night and realize your foot or hand has fallen asleep. Linda and I were just talking about what might be causing it cause it’s driving me crazy. I was trying to do some stretches to see if the muscles are tight, etc. to alleviate it and then it hit us. We can see on my arm where they had to pull the skin together, where the melanoma spot was, and the skin in that area is really tight and it’s directly under there where the numbness is. Just wrapped too tight, I guess. See I knew there’d be an explanation for it. Just don’t know how to loosen it up. I think the numbness is 
easing up….just not quick enough for me.
I can’t get over how lush and green it is here in Pennsylvania. We had gotten used to so much drought-stricken areas out west that this is such a stark contrast to all of that brown backdrop. It’s also been raining ever since we arrived so it’s getting super green and super lush. Our site is nicely shaded and has a beautiful, tall shag hickory tree towering up through the tree canopy. It’s just gorgeous and so majestic ! Boomer is having a ball exploring different parts of the campground as we go out for little walks. They are calling for more rain tomorrow but the weekend is supposed to be perfect so tomorrow night the peace and quiet we’ve experienced these last few days will be replaced with the squeals of little kids and their families. The air will be filled with the smell of campfires and camping will be in full force. Since this campground has so many rides and amenities, geared towards children, the daily rates are quite high so it is pretty quiet during the week. There are many seasonal sites here and that is what draws families to come here from Friday night to Sunday afternoon. They can leave their work behind and get away with their families for rest and relaxation.
Tomorrow it will be one week since my surgery. The doctor said that it would be 5-10 work days before the pathology report would come back on whether the melanoma has spread to my lymph nodes. We’re hoping that we will hear sooner, rather than later and that we get the “all clear” message to resume life as we know it. Until then, I’m trying to “hang loose”, rest and get my strength back. I thank everyone for their prayers and good wishes. Keep ‘em coming…..the biggest speed bump is yet to come.
After 2 hours in the operating room and 3 hours in recovery, the surgery is all done and we’re on the road. My day started out with a small dose of radioactive juice injected near where I had the melanoma spot. The tech rubbed the area to get the
juice moving. Then they slid me inside of this machine and they took a 2 minute long picture which shows the juice moving to the closest lymph node area. It could have gone to either my neck or my armpit. The radioactive juice goes to a sentinel node, which is the node responsible for draining. The two ladies who were working on me were super nice and there wasn’t any pain whatsoever in what they were doing.
They put a little screen to the side of me so I could see what they were seeing. Linda was in the room with me the whole time. She was the official photographer of the events of the day. They took a total of 3 pictures and on the last one, one of the ladies reached in and marked with a marker where they thought the sentinel node was.
Here’s my scarlet letter.
We finished up with this stage and then we had to wait till 11:30 for the surgery so we had several hours to kill. A couple friends of ours (Thank you Bobbie and Nancy) had suggested that we ask the parking crew and see if they had any RV hook-ups so we could bring the rig and stay there, if need be. They have 2 hook-ups but the guy said it might be a little tight because they are in a regular parking area. He
suggested that we park in Lot 6 because the one side was blocked off to have the striping done. So Friday morning, we drove the rig to Lot 6 and parked in the empty lot. Once the radioactive test was done, we went back to the rig to hang out.
At 11:15 we went back across the street to the hospital and my surgery prep started at 11:30.
Debra (as seen in this picture) was my nurse and she is also the charge nurse, responsible for all of the nurses in the day surgery area. Super nice lady ! And she gets an A++ for her putting in the IV line in the back of my hand. That is one of the things I hate the most about surgery cause it hurts when they put it in. Not when Debra does it. So slick…Debra was explaining to us that Univ. of Colorado hospital is a “magnet” hospital, which means the nurses have a big say in what goes on in the hospital. They are not slaves to the doctors, like in most hospitals. The nurses have meetings with the doctors about the care of patients and there are pretty stringent guidelines that have to be met in order to have this distinction and UOC has gotten it for the last 4 years. We’ve been really impressed with the hospital staff and their style of healthcare. 
Here is their mission statement….
My surgery was scheduled for 1:30 but another surgery got put in the schedule so I didn’t go until about 2:45. As Dr. Nicole explained to us, once in the ER she would use a small Geiger counter to locate the radioactive juice. She then inserted a blue dye that would get absorbed by the sentinel node and let her know which one to take out. She actually took 2 nodes out of my armpit and then proceeded to remove any cancer cells that were around the surgical site on my shoulder. Here’s what 
I wound up with. The cut on my arm is 4.5” long and the one under my arm is about 3” long. All through the process, Linda could track my progress with a color coded system that showed her what stage I was in. 
My patient number was 142787 so she could watch the monitor in the waiting room to see what was going on.
Here’s the status board patient’s families can track their progress throughout surgery. It’s a really cool system.
My body does not do well with anesthesia. They gave me a anti-nausea patch behind my ear before the surgery and four different meds in my IV with anti-nausea medicine in it but none of them did the trick. 
They gave me a couple of these dandy barf bags, which I thought made for great hand puppets (they were empty at this point). Finally I was discharged around 8 p.m. and one of the nurses put me in a wheelchair and took me all the way to the rig. What awesome customer service ! We had hoped to get on the road right after surgery but I was in too much pain to tolerate any bumpy roads. we decided to spend the night in the parking lot and we got on the road at 7:30 on Saturday morning. The worst pain is under my arm, since it’s in such a tender spot. I’m surprised how low the incision is….really close to the top of my left breast.
Linda is doing all the driving because just the act of holding the wheel would be very painful to me. I’m in charge of taking naps and doing a whole lot of nothing. Since our bedroom is in the loft, we’ve been pulling out the sleeper sofa so I can get in and out of a regular bed. Much easier than trying to crawl on my hands and knees to get into the loft. Linda drove 500 miles yesterday and we stayed at a truck stop last night. We have 1200 more miles to cover to get back home, in PA. We are in a waiting game again for the pathology report on the lymph nodes they took out. Could be up to 2 weeks before we hear if they got it all or if I will need more treatments. I suspect that if the cancer is found in the lymph nodes, then I will probably have a scan to see if the cancer has gone to any other part of my body. We’re keeping our fingers crossed that they got it all.
Thanks for all the prayers and well wishes that I’ve seen on Facebook and on our blog…it means a lot. I’ll keep you posted as we hear more. Enjoy the rest of your weekend ! I think I hear the couch calling my name so TTYL.
On Saturday, when we arrived at the Flying J, we filled up with gas and propane and then I unhooked the car from the rig. When everything was filled up, I moved the rig around back to a quiet part of the parking lot that was behind the store. This wasn’t part of the usual trucker area, but an area where the “bobtails” (just the truck part of the combination)could park. Like I mentioned in my last post, another motorhome was parked there so I backed in next to them.
That evening we had supper inside at Denny’s. When we were filling up with gas, we had noticed a young man and his dog, hanging out in front of Flying J. He wasn’t panhandling or anything…just looked road weary and hot. His dog looked like my son’s dog; like he might have some Rhodesian Ridgeback in him. The man had a huge pack on his back, but was very clean and well kept. We didn’t give much thought to this duo and thought maybe they were catching their breath and getting ready to hit the road.
When my son called me around 3 a.m. that his dad had passed, we were up for the day. A couple hours later we went into the store to get something to eat and found this young man and his dog, sleeping under a small tarp on the sidewalk, around the corner from the entrance to the store. We could see the dog’s paws sticking out from under the tarp and knew he was curled up next to his buddy, getting some rest before setting out the next day. It broke our hearts to see this and it stuck with me as we walked back to the rig.
I waited till I thought that they were awake and went out to talk with the young man to see what his story was. I had filled a large zip-lock bag with dog food for the pup and grabbed a couple treats from Boomer’s container. As I approached the young man he was walking around in almost the same spot we had seen them sleeping. The pup had a rawhide toy that he was playing with. I asked the young man where he was headed and he said he was going to Wyoming to visit some family. He had spent the winter in NY and was hitchhiking up to the Cheyenne area. He was hoping to get a job driving truck. He was very polite and humored this mom’s questions of “do you have money”, “do you have food” and “what do you need”. He said that he needed socks so off I went into the store, hoping that Flying J stocked something so basic but knowing that they aren’t exactly a Wal-Mart either. They did have a 6-pack of socks so I bought them and took them back out to him. I gave him the dog food and he started re-arranging his backpack to find room for it. He said he wanted to get over to the TA truck center because that was on the route he needed to go north on. He had pulled a muscle walking so many miles the day before and was trying to rest up a little before heading out again. The heat of standing out on the highway for several hours had taken a toll on his dog so it was good that they stopped for the night. Once I came back to the rig and told Linda about our discussion, she went out and asked him how far it was to the TA plaza and he told her 7 miles. She loaded him and his dog into the Xterra and headed out to take them up the road so they could get a start from the TA. She said he was so appreciative of the ride and she gave him $20 to give him a couple meals for the next leg of his trip.
It was a small interaction but one that we felt really drawn to, that sad Sunday morning. My heart was so heavy for Joel and my kids but I know that as generous as Joel was, for all of his life, he would be proud. Joel spearheaded the campaign in the Sayre/Waverly area in 2011 when so many homeowners were devastated by the flood. Times when I would chat with him or exchange e-mails, he was helping someone rebuild this or that and the rebuilding continues until today. He served on the Salvation Army board and loved everything that he did with them. The Valley Business Alliance was such a huge part of his life and he so loved to help others in any way he could. He never asked for anything for himself and got by with so little. His heart was so full of generosity and compassion for others. He
played Santa Claus for many years at the Sayre Theatre and this year he sent me an e-mail of an interaction with a child that touched him so deeply. When he asked this particular little boy what he wanted for Christmas the little boy teared up and said, “Why can’t everyone just get along ? Why can’t everybody just love one another?” I’m not sure that Santa had an answer for that little boy but I can almost guarantee you that Joel gave that little boy a big hug before he climbed down off his lap. He was very moved that something like that would come from the lips of a small child. Things like that touched him. Joel was very sentimental and not a Mother’s Day would go by that he didn’t send me an e-mail and thank me for Becky and Jay. He loved all of his kids and grand-kids so much and felt that they were such a blessing to him. I think that blessing flowed the other way too….they were blessed, for too short a time, but blessed nevertheless with a father who was such a great role model of love, selflessness, compassion and friendship. He will be greatly missed but his legacy lives on in them and in all of us, should we decide to help our fellow man. What do you want your legacy to be ?
We awoke to a beautiful day, here at Cherry Creek State Park, in Aurora, CO.
Linda and I took our morning coffee outside to enjoy in the cool temps. Our site is very nice, siting on top of Good Rush Loop, where we can overlook many of the sites that sit lower in the loop. Boomer has been enjoying being outside, hanging out on the patio or laying in the gravel. He’s such a mellow dog and that is probably due to him being 14, although you wouldn’t know he’s that old except for the gray on his face. There are two big, black and white birds that must have a nest in the tree next to our site and they must view Boomer as a threat to their babies. He’s trying to be a good neighbor but one will sneak up behind him 
and peck his tail, when he’s laying outside the rig. Once the bird has done that, Boomer will take a little hop toward the bird and it will retreat. This bird will do that even when we are sitting out there within 6’ of this bird. It’s kind of funny to watch but I think Boomer is growing weary of it. Maybe the bird thinks that Boomer is his big brother (they do have the same coloring) and just wants to play.
We were able to check in here yesterday, around mid-day, after spending Saturday night at the Flying J, just down the road from here. We were actually parked next to another couple, who is a few sites from us here, who were also waiting to come to Cherry Creek. Our reservations have us leaving on Friday morning but since my surgery is Friday, the campground manager has agreed to let us move to an overflow spot on Friday. We’ll have to check out on Saturday and I’m hoping that I feel well enough to travel so that we can start the drive back home. If we have to hang around for a few more days, for post-op, we’ll have to find another campground in the area. We’ll see what Friday’s surgery entails and go from there.
I’m trying to stay positive and upbeat for my surgery but we had some terrible news
yesterday and it’s been really hard to deal with. My daughter and son have been taking turns, going to be with their dad, who had triple bypass surgery back in PA. Becky spent the initial week with Joel during his surgery and hospital stay. Jay spent this past week with his dad and early Sunday morning Joel had to go back to the hospital and something went horribly wrong and they couldn’t stop or reverse it. Jay called me around 3 a.m. to say that his dad had passed away. It was a horrible shock when he seemed to be well on his way to recovery. Jay and his older sister Liz (from Joel’s previous marriage) got to be with Joel when he passed. He was so loved by all five of his kids as they have traveled to spend time with him during this whole ordeal. Joel adored all of his kids and his grandkids and has left a really big void in their lives with his passing.
Joel was very involved in the Sayre/Waverly business community, serving on many boards and felt very strongly about giving back and helping others. Joel spent his life in TV and radio and retirement did not slow him down at all with all of the charitable work that he did. Here is one of this morning’s front page articles that appeared in a paper back home, that goes into more detail about his work with the community. Joel played Santa for many years in Sayre, with his natural white beard and jovial manner. Joel and I have been good friends over the years, since our divorce, and Joel has always been a part of our family’s holiday functions. I feel very conflicted about being so far from home during this tough time in my kids’ life but they have told me that I need to focus on my health as well and that I need to take care of myself. I know they will get through this but it’s tough for all of us nevertheless. Please keep them in your prayers as they go through this really tough time. I know he is still very much with us in spirit and always will be. Rest in peace Joel….you were loved and will be missed.
Today was my appointment with the oncologist at the University of Colorado, in Aurora. When I was told that I would be meeting with Dr. William Robinson, his name meant nothing to me but Linda recalled working with a doctor by that name at the cancer center in Williamsport. Linda worked there, doing PRN (as needed) nursing before we went on the road. Turns out that this Dr. Robinson didn’t work in Williamsport but his son, also an oncologist, currently works in Chambersburg, PA, where Linda B is from. How weird is that ! We chatted about a whole bunch of things after that. He was born in Breckenridge (where we are currently staying) and he told us how his dad was part of the mining crew that created all the huge piles of gravel and stone that you see along the river as you drive towards Breckenridge. He asked if we’ve tried panning for gold in those stone piles and that there are also a lot of red stones that you’d find there. I can’t remember the name of the stone but it was a fun chat regardless.
He was a super nice guy and we were so impressed with the whole experience and all of the staff. First off, no fussing about where to park or having to hoof it to get to the correct building. You pull up in front and they have free valet parking. You get out in front of your building and give them the keys to your car and go to your appointment. We were about 20 minutes early by the time we got to the Oncology dept. but we probably didn’t wait more than five minutes and we were taken in. After a couple minutes in the exam room, Dr. Robinson stopped in and introduced himself, asked if we needed anything and said that he would return in 5-8 minutes. I don’t think we waited more than 5 minutes for any of the services we needed to get. We were really impressed with the level of service and the courteous staff !
We learned some interesting information about melanoma today. According to Dr. Robinson, you get melanoma when you are a youngster and your skin is growing and stretching, etc. and you are exposed to high doses of sun and get burnt. With multiple exposures like this, the scene is really set for a later onset of melanoma. The fact that I had basal cell is a strong indicator that I could get melanoma at a later time (I was never told this with my basal cell). I had been told that if my basal cell came back (which is not common since basal cell does not spread in the body like melanoma does), it would likely be near the original site. Constant exposure to sun can lead to squamous cell carcinoma, which again is not a spreading cancer, but another form of skin cancer. He asked me a lot of questions about occupation, childhood and ethnic background, which is a big pre-disposer to whether someone gets melanoma. He said brown haired, northern European descent people are at higher risk. He also talked about northern European people (I’m PA Dutch – German as far as I know) having webbed toes and I thought he was joking but then he said to the resident who was working with him, “see how her little toe is more connected to the one next to it”….Before you start getting visions of a mermaid or something fishy, I don’t have webbed feet. LOL Can’t swim….don’t especially care for the water so no marine mammal connection there. Bottom line is if you have young kids, grandkids, etc., make sure you get a good SPF lotion on them before they are outside for any length of time. All kids have recess or outside time at school, so put it on them before they get dressed in the morning. It’s no wonder that melanoma numbers are skyrocketing, when you think about my age group and our lack of sunscreen growing up. Let’s give the next generation a better chance with this deadly disease. Too many young people are getting melanoma and it’s something they will have to be checked for the rest of their lives. Once you get it, it’s not going to go away. You have to be vigilant and keep an eye out for new spots or problems.
Dr. Robinson checked me all over my body for another primary site and none were found. I had a chest x-ray done and blood work drawn (6 tubes). Some are for a bunch of tests he wants to run and some is for a research project I volunteered to participate in. Dr. Robinson is trying to identify markers for melanoma since no blood tests exist that can detect it. He will use participants blood and tissue (from when I have surgery) to see if he can find correlations that will help detect melanoma early. He checked (with his hands) my liver, kidneys and lymph nodes in my neck and armpits and did not detect any lumps or growths. He said that if melanoma spreads, it typically goes to the liver, kidneys, brain, or lymph nodes.
The next phase is surgery next Friday. I will have a pre-op meeting, with the surgeon (not Dr. Robinson) next Thursday and surgery will be at 1:30 on Friday. They will inject a radioactive tracer and follow it to see where it goes and then
dye will be put in, near where the biopsy was done. The dye will be followed through the lymph system to see if the dye shows up in any nodes. If it does, they will remove any node that is colored by the dye. He said years ago they used to remove all the lymph nodes but they’ve learned that it’s stupid to do that and they don’t do it anymore. They only take out the ones affected. If the melanoma is found in the lymph nodes, then there will be more scans and such because that means the melanoma has spread. The spot at the bottom of this picture is where the punch biopsy was done and where melanoma was found. That is 6 mm across in size. The mitosis rate, from the pathology report was 3-4 mm, which he didn’t like. This number means how much the cells are duplicating. They like to see this number at zero. The basal cell surgery, that I had done in 2007, is the long scar above the melanoma site. The basal cell spot was the size of a pencil eraser and was in the middle of this scar line. In order to get all of the tentacles of the basal cell, they had to cut a lot of tissue out, hence the long scar line. While I tend to like things that match, I don’t want matching scars. A small incision would suit me just fine next Friday.
Tomorrow we leave Tiger Run Resort and we’ll move down the mountain to the Aurora area. We spoke today with the state park, near the hospital, about our reservation and the upcoming surgical date. We could only get a site for Sunday – Friday but the woman in the campground office said that they might be able to put us in an overflow site. We don’t care if we have to move between sites, during our stay, but we really would rather not have to leave the campground for the weekend, then come back in again. She said that people, in the Denver area, book sites 6 months out and book Friday – Sunday, for the whole summer, so that‘s why nothing is available. She was very helpful and I think we might be able to get the extra nights that we need for our stay. The doctor, doing my surgery, leaves on vacation for a week after my surgery so not sure when we’ll get the pathology results or when we’ll have a follow-up visit. When Linda was stressing to Dr. Robinson that we needed to get this taken care of quickly, because of our work and RV lifestyle, he promptly told her that this was about “Better, not quicker”. Highly skilled surgeons, who deal with melanoma do the surgery (they have 4 of them) and he isn’t one of the surgeons. They have to proceed in a manner to make sure everything is looked at and considered because as he said, “We’re talking about her life….this isn’t something that can be rushed.” We’re not used to being slowed down and told to wait. We’ve had busy work schedules, for quite a few years but his advice put things into perspective. Do it better, not quicker…
I brought something home from my six month internship that I hope will get resolved in the next week. At some point during the latter part of my six months at White Violet Center, I noticed a spot on my left shoulder that seemed similar to a basal cell carcinoma that I had removed in 2007, before we hit the road for our new gypsy life. When I talked to Linda at one point, I told her to try to remind me to show it to her when I would see her again in February. Since it was in a spot where I couldn’t see it straight on, I could only feel it and it seemed scaly, but with a little thickness to it.
When Linda did come to get me and things weren’t so crazy, I showed it to her. We decided to take a picture of it and monitor whether it changed or not. We 
knew, that as busy as our work schedule was, we weren’t able to get our annual check-ups until we got back home in September. From what I could feel, it had the scaly feel of the spot I had in ‘07 so I didn’t think much about it. We worked the upper portion of Texas from Mid-March until the beginning of May, moving every week or less to a new campground. When we finished that assignment, we had planned to stop and visit friends in Alamosa, CO on our way to Breckenridge for our next job. I had tried to schedule an appointment with a doctor in Alamosa, when we knew that we’d be heading that way, but the doctor was booked up and I couldn’t get in. While we were visiting our friends in Alamosa on May 9th, we were driving around town, taking pictures of Flat Stanley with local attractions. Flat Stanley is a paper cut-out of a little boy that was sent to Linda by her grandson, in Norfolk, VA for a class project he was doing. We took Flat Stanley to the train display in town, the display of the Great Sand Dunes and other things we thought would be cute to photograph him with. As we drove down one of the streets, on the way back to our rig, we went by a Community Clinic and Linda said “hey, a clinic…let’s see if they can take a look at your spot”. I went in and there was no one at all in the waiting room. The doctor came out and I showed him my spot and told him I thought it was probably basal cell, like I had before and told him briefly my history with basal cell. He said he didn’t think it was basal cell but looked more like melanoma. I think my heart stopped for a minute, then rose to my throat, because I knew that melanoma was a much nastier cancer to deal with than basal cell. Basal cell typically doesn’t reoccur, once it’s removed, and it doesn’t spread in your body. Needless to say, I was a little scared.
At this point I think it important to know my history of sun exposure. I grew up on a dairy farm and most of my summers were spent sitting on a tractor seat, raking hay in the fields or working with my brother to unload the hay wagons. I don’t recall that we used sunscreen but I do remember getting burned many times as a kid. Later on, when I was no longer working in the fields, I did like to go to the beach on summer vacation and lay in the sun. I’m sure this history of sun exposure is what has lead me to this outcome. Melanoma is the 2nd fastest growing cancer for women, with lung cancer being number 1. It’s number one for men and a cancer that is really getting out of hand.
Back at the doctor’s office, Dr. Ed removed the spot with a 6 mm punch and sent it away to be analyzed. Knowing that he thought it was melanoma, made the next week a long one for the diagnosis to come back. On the 15th we learned that they thought it was melanoma but they had sent it on to the Univ. of California for more analysis. More waiting…..This past Friday, the 23rd we got the pathology report and it is melanoma…Clark Level 4. When we got the initial report on the 15th, the doctor who called us with the news said that we needed to make a decision on where we wanted to go for surgery (they will need to make a wider excision to make sure they get all the cancer out of my arm) so we started researching facilities near us and called our friend Cindy, who also has melanoma. She was a great source of information and strength for us, as we were pretty scared at this point.
I know this has been a long story about the whole process but where we are at today is that we have an appointment tomorrow at the University of Colorado Cancer Center. They are one of 41 premiere cancer centers in the country and they also specialize in melanoma. Tomorrow’s visit will be to generate a treatment plan. We’re hoping that we can get the surgery scheduled for early next week. In the meantime, our work continues but we’re really up in the air about what happens over the coming months until we know how extensive the melanoma is. If they cut it out and get everything, we’ll hit the ground running and keep on keepin’ on. If there’s something more extensive, that involves more treatment, we will head back to PA to get those treatments done.
For all my sun loving friends out there, please use sunscreen but more importantly check your skin for spots that don’t look normal.
Over 80,000 people will be diagnosed with melanoma this year. Go here to get the signs of what abnormal spots look like. Finding those spots and getting treatment can mean the difference between life and death. I debated about whether to share my health scare on our blog, since I’m a pretty private person and don’t put my health stuff out there for all to see. But I also feel that if my story can help one other person to take better precautions in the sun or to get a funky mole checked out, then it’s worth it. I’ll post what we find out at the doctor tomorrow and what the coming weeks entail. In the meantime, I’m asking for a positive collective conscientiousness for a good outcome. Whether that means prayer, good vibes, well wishes or whatever in your book….send them my way.
Wow, saw this article on CNN.com this morning and wanted to share it. I’ve always had a huge fascination with solar energy, having studied and done reports on it all through high school. This article was neat because this man took a boy-hood dream and has turned it into a reality. Not only would it provide more energy than our country could possibly use but no more snow or ice on the road or power lines. I, for one, would love to see snow plows and salt become a thing of the past.
Wow, I just stumbled upon something that I had completely forgotten about. Back in September, shortly after Linda dropped me off at White Violet Center for my internship, I got an e-mail from our financial advisor. He had been contacted, through his Cambridge Financial Planners group, by a woman who wanted to do an article on a couple who had given up their house and a “normal life” for an RV lifestyle. Ross immediately thought of us and in his e-mail asked if we’d mind being interviewed. We said it was fine so he made the connection. Although I knew the writer was doing it for AARP, I thought it was for a new magazine they were publishing but I was mistaken. Apparently it was for a new on-line site that AARP has developed, called Life Reimagined.
Long story short…..a woman called me while I was out in Terra Haute, at the Sisters of Providence and asked lots of questions. Back in December or so, we had gotten a call to verify some of the info, in the article, which apparently they didn’t write down the answers to because I picked up a child I didn’t know I had and “B” lost one (easy to do on paper I guess). I had found the website a few months ago and bookmarked it and just now while I was going through my bookmarks looking for something else, I saw the site and went to it. To my surprise I found our article, which was put out there in February. Here it is, if you’d like to read it….http://lifereimagined.aarp.org/stories/5691-At-Home-on-the-Highway
Today is mom’s 89th birthday. She hasn’t been feeling well lately. She has a lot of pain in her back and can’t stand for very long. Since we’ve been home, we’ve taken her to the doctor’s several times to try to get to the bottom of her pain and she has another appointment next week where they might fit her with a back brace. Her family doctor said that she has severe scoliosis of the spine and the vertebrae are twisting around and causing the pain. In a recent trip to the ER we found that she has an old compression fracture in her back so that probably isn’t helping either. Since we’ve gotten back to the area, we’ve taken over mowing her lawn for her. She has about an acre of grass to mow and bouncing around on the mower was not helping her back at all so we told her we’d do it for her. 
Tomorrow she is going to the casino with my sister and we’re going to have a surprise waiting for her when she gets back. We drove by this gardening place today and stopped to look around. They had this lily that has huge, dinner plate size blossoms on it and the greatest fragrance. We bought it and a purple butterfly bush to put in an empty spot that mom has right off the deck where she can see it. She hasn’t seen many of her flowers this summer, that are out in the yard, because she’s afraid to walk out there by herself…for fear of falling. This way she can see it from the deck as it blossoms and it is loaded with blossoms !
since being home and they are now out, working jobs and doing great. One couple is originally from Pennsylvania and the other couple is from Texas. We love helping these teams get a great start on their new career with AGS and seeing them do well. We feel 
like proud parents that send their kids out into the world to make their way. 
Today Linda had to help out at the Grand Canyon Marathon, working a water station at the first stop. I went along to help out. She volunteers with a group called Haven of Tioga County, which is a group for victims of domestic violence and sexual assault. There were 600 runners signed up for today’s race but I don’t think they all showed up. Today it was a half marathon of 13.1 miles and tomorrow is a qualifying event for the Boston marathon with about 200 people running 26.2 miles. We had to get up at 4:30 and be in Wellsboro at 6:00 a.m. but we were all done by 8:00. It was a fun morning.
didn’t have a chance to see many of Linda’s family. The weather was really hot and humid the first few days we were there and then we got a break and the temps dropped back into the 70’s and was very comfortable. 
My scars keep healing and getting better. I rub some of the bee bar, that my brother gave me, on them each day to help to soften them. In the near future I’d like to go to a massage therapist and see if she can help the numbness and nerve pain. The pain has gotten much better but just the feel of material on my underarm sometimes is really irritating….just the feeling against my skin. I want to make sure that the tissue is really healed up well before I go but I think it would be beneficial. We are staying in Mansfield, at Bucktail Camping Resort, for a while so that we can be close to mom and help her with errands and appointments. She hasn’t driven since she fell at the end of May and has had frequent doctors appointments to try and get her pain under control. Life goes on and we’re rolling along, taking what comes. We’re thankful to have time with family and enjoy life.
