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
We’re on the move weekly, covering sections of Region 2 in Texas. Our region covers from the Oklahoma border down to Alvarado, west to Abilene and east to
the Arkansas border. We had been staying at The Vineyards Campground, located in the town of Grapevine. The park used to be owned by the Army Corp of Engineers but is now owned by the city of Grapevine. It’s a very nice park with lots of space between sites and most all of the sites face the water. The water level is currently down 10’ but it is still very pretty around the lake.Then we moved to Grand Prairie, which is only about 30 minutes from Grapevine. We stayed at Traders Village for a week. Traders Village is a giant flea market with a bazillion vendors offering all sorts of things. We’d never been there so we were anxious to see what it’s like. We walked from the campground to the flea market, next door, about 9:00 a.m. and the vendors were just getting set up. We didn’t get to see much cause nothing was set up yet. Our only purchase was a bag of freshly made kettle corn that a woman was making in a big copper kettle. We ate some of that and walked back to the campground. to break camp and leave for our next park. We’re currently in Wichita Falls, in the northern part of Texas. It was really hot today and it’s supposed to be 98 degrees tomorrow and 100 degrees on Monday. Texas is in a heap of hurt in regards to the drought. The other night on the news it said that many areas were now in “exceptional” drought status, which is the worst category. We heard that of the three reservoirs that serve Wichita Falls, they only have 24% of the water they should have in those reservoirs. Wow, that is scary stuff. Texas and California are both in really dire straits with their water situation. I hope that municipalities in these two states mandate water conservation measures on new home construction. The worst is yet to come for drought conditions and whether you believe in climate change or not, the reduction in water in some areas is a reality that these people have to live with.
It’s hard to believe that in about a week we’ll be up in Breckenridge, CO working and that our time doing TACO sales will be over. The time sure has flown by and we’ve met so many great campground owners and managers. Being in the campground business is really hard work….as one owner told me, “It’s the hardest thing you’ll ever do”. You have to be available at all hours of the day and night to take care of your customers. When the wi-fi goes down at 2 in the morning, who ya gonna call ? It’s been awesome to hear from these owners about their businesses and help them with the marketing for their business.
Our car is acting up again. The engine has been making a ticking sound for about a week so we took it to the Nissan dealership, which was on the way after leaving our last park on Friday. Next door was the Ford dealership and Linda took the motorhome there to get the oil changed and tire pressures checked. Her appt went well….mine not so much. At first they told me that the replacement engine that Linda had put in back in November was bad. They said the lifters were clattering and that was the sound we were hearing but they would further assess it and let me know the extent of the problem. I was not a happy camper. I needed an oil change so they went ahead and did that; then said that the ticking stopped. So their conclusion was that the gasket or seal in the oil pan is leaking and the loss of a little oil was causing the lifters to be noisy. Long story short….we sat there for 7.5 hours with no decision on whether the warranty on the engine would pay for a new seal so we said…Forget it…we’ll keep an eye on the oil…and we hit the road. Two hours later we arrived here in Wichita Falls. We know that we need to get a newer vehicle but since anything new would need all the stuff installed to be able to tow it (braking and towing brackets), I don’t want this type of decision to be made in haste so we’re going to try to keep an eye on it till we get home this fall and then maybe we’ll be ready to get something different. Keep your fingers crossed that she holds up over the next few months. I’ve got faith in her that she can do it !
Hoping that everyone is enjoying springtime. Not sure that it has arrived yet back home in Pennsylvania. Seems every time I talk to my mom, it’s really chilly and rainy there. Linda and I did have some sad new in the last ten days. Jay and Kelly lost the baby that she was carrying. It was hard to see babies and cribs at the flea market last Saturday, when I had just heard that my new grandbaby had died but I trust that God had bigger plans for that little Peanut. I know that things happen for a reason, and sometimes for no reason at all, but as they say, the things that don’t kill us….make us stronger. Our hearts go out to Kelly and Jay….may their love grow stronger as they come through this together.
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. 
