Surgery

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.

Oncology Visit

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…

Indiana Revisited

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.