The New Me

The old me.....passive, quiet, c'est la vie, water on a ducks back. Always, it will be okay. What ever happens happens. Not much of anything ever bothered me unless it had to do with my family or friends (don't mess with my family or friends!). always willing to take the back seat to everyone and everything.

The new me? Aggressive. Standing strong. Stand my ground. It's time for me to take the wheel!!! This is MY life! You are not a victim if you just stand by idly watching what happens. You have a voice, use it! You matter!!!!!!!!!!!!

I have heard several people talk about having to be your own advocate. Heard the words and thought, true, but don't think it really sunk in. Today it hit me and hard!! If you don't stand up for yourself who else will?!?!? You can't just sit back and watch life pass you by and then wonder what the heck happened. And beating yourself up won't do any good either. What's done is done. but what happens next.....that is up to YOU!!!!!

Be present!!!! Be accountable!!!! Wonder if there are people that won't like the new found you?? Too bad!! You don't need them or want them in your life. Things happen and we change. If people don't like how you change or what changed you then they were not true to you. When you think about un-cluttering your life it should be in all aspects. Not just getting rid of some old clothes that don't fit you any more. Get rid of all the rift raft. (if you are reading this and wondering, is she talking about me? the answer is no)

The old me was happy sitting in the bleachers watching. The new me is in it!!!! I will play an active role in MY life! I think I had a hard time adjusting to that at first. I need to be important but I have never made myself important. I can't afford to be on the back burner anymore.


So, I started writing that yesterday.......I know everyone has dreams when they sleep right, or so I have heard. It is rare that I ever remember having a dream. This morning at 3am I was woke from a dream. I have slept through severe storms so for me to wake up from this was pretty shocking to my system. In this dream I was in a hospital. Not sure why or where but I was alone. Just me, doctors and nurses. No one was talking to me. They were going about their business. Putting an IV in my arm. That's what woke me up. I laid in bed for a bit wondering if I was going to get back to sleep. Luckily, I think, I was able to go back to sleep but only to have the dream continue. The IV came out and the nurse seemed angry at me for it. She tied 3 bands on my arm to try and get a vein and then walked off. My arm was turning purple and blue! Another nurse came over and had to cut the bands off. They got another IV started in the other arm. I was wondering around this hospital with my IV pole, white room after white room. I didn't know anyone. No one spoke to me. Then good news. They said my husband, my sister and her husband were going to come pick me up for an outing. I had to take the IV with me but I could get out of those white rooms. They picked me up and we went to a park. My husband and my sister's husband started drinking beer. What??????????? That's all I could think. I have been "locked" in this hospital for I don't know how long and all you guys want to do is drink??? And who the heck is going to drive us back to the hospital?????

Does it have anything to do with this blog? Some may think yes. Some may think no. Me, I am unsure. I just know I am a VERY sound sleeper and I very rarely remember having any dreams at all.

So as I was typing this morning on the radio......LEAN ON ME, WHEN YOU'RE NOT STRONG!!!! I'LL BE YOUR FRIEND, I'LL HELP YOU CARRY ON!!!!

What a blessing!

Waiting

I use to have all the patience in the world. Stuck in traffic, no big deal, meant to be delayed. Waiting in line at the store, no big deal. I actually remember a day that my son went with me to get groceries. The lady in line in front of us was having some sort of issue with her transaction. We probably stood there 20 minutes waiting. He was trying to get me to get in another line and I said no, that's okay, we can wait. When I think about the old me I can't help but laugh but it makes me a little sad too. I liked the patient me. Sometimes I wonder how I had patience before.

So Tuesday I went to see my primary doctor because I believe I am having some anxiety issues. Having heart palpitations. So as we are talking about what's going on that might be causing anxiety I said mostly the whole melanoma thing. He started reviewing the results from the biopsy (so glad I brought the copy I had because he still hadn't received it) and he asked if I was on Interferon. No. Hmmm. Then he asked if they have done lymph node biopsies. No. Hmmmmm. He asked if they have done any blood work. No. Hmmmmm. He said he wants me to get a second opinion. Wanted blood work before we decide on the anxiety thing so I had blood drawn. He had the nurse call Kansas City Cancer Center about getting me in for that second opinion. She called them, left a message. They called her back and wanted a copy of my biopsy and surgery. She called me back to confirm where I had that done. She called me back again, said they would not release my info without a signed consent. Keep in mind that they had sent him some of my records as every time I go in for an appointment with them I always say please make sure to send my primary a copy of my records which they always say they will. He did have some records from them but not the "big" ones. So I told her to fax me the form and I would sign it and fax it right back. That was the last I heard. I keep reminding myself that he did say that they may not feel I need a second opinion. That it will take some time for someone to read those 2 pieces of paper to know whether I should come in. My inner voice says wait. It will come. Breathe. Loosen your grip on your phone. Don't freak out every time it vibrates.
If I don't hear from them by the time they call with the results from the blood work I will ask them if they have heard anything.

Abnormal is my new normal

AND I DON’T LIKE IT!

So I got my call today about my biopsies, abnormal but got everything with the biopsy so follow up as scheduled. This call came on my cell phone. Note that they have never called my cell, always the house phone so that initially got my heart to racing. I wasn’t expecting the call till Thursday or Friday at the earliest so that didn’t help either. I was glad to hear they got everything. Not sure I care for ‘abnormal’. That’s the way I feel anymore, abnormal. Everything that was my “normal” is gone and now I live abnormal every day. Most days I am a pretty positive person or at least try to be. Positive. Upbeat. But some days….. I just want to SCREAM!!!!!!!!!! This is one of those days. Why would I want to scream over “good” news? Well, let’s do the math. I have had a total of 9 biopsies thus far. 1=melanoma. 4=abnormal cells but got everything. 4=ok. Some may say 8=good and only one bad. My mind sees 4=good and 5=bad. Thankful for getting “it all” on those 4 but still can’t help but wonder… I am a VERY spotty person to say the least. Like hundreds spotty. What are the chances that out of those hundreds there are more that are ‘abnormal’. That could possibly be further than ‘abnormal’ by the time they do biopsies. What are the chances that there are some that are melanoma and she just hasn’t picked the right ones yet. I check my body on a regular basis. Probably more than just once a month and I worry about all of them. I have seen the pictures on line and the spots she has taken thus far to me look nothing like the pictures. One of these last 2, the one from my thigh was so tiny and it was abnormal? I have others that are way bigger. So how do you know? How do you know if a big spot that looks pretty similar to a tiny spot isn’t a bad spot too?

I am still lost in this unfamiliar world. I think most days I live in a haze. Try not to think about it. Try not to worry. The things I found joy in I no longer care about. When I watch tv now all I can think is ‘are they wearing sun screen” or “I wonder if they have had that spot checked” or “they should really get that spot checked”. Hard to enjoy a show when that’s all you can think about.

Some days all I want to do is cry. And then other days I feel so emotionally detached I wonder if I have feelings at all.

I live in a new world. It’s not a world I like. It’s not a world I would have picked for myself but it is my world now. I can hope and pray that one day I will “adjust” as best I can to this new world. That I will “accept” this new world. That I don’t lose my mind in the process. That I don’t drive my loved ones away during the adjustment period. I have hopes that one day I won’t go from angry to depressed to detached to denial and back to angry to start all over again.

God grant me the serenity to accept the things I cannont change; courage to change the things I can; and wisdom to know the difference.

I tell my husband that all the time because he is the biggest worry wart I know. Always stressing about the unknown. I always tell him it doesn’t do any good.

Today my lesson to myself. If you are going to talk the talk then do the walk.

Panic Attack

Most know the feeling. Can’t breath. Heart racing. Stomach doing cartwheels. Dizzy. Light headed. Mind is about to explode. There are several things that cause me to have them. Being around too many people will do it. Feeling like I am closed in a space and I can’t get out. There are usually things I can do to make things better.

I have a new reason I get them. Now I am on a never ending roller coaster and I can never get off. I have enjoyed riding physical roller coasters in the past. Usually within the first few seconds you start asking yourself what the heck were you thinking and why did you get on. But before you know it the ride is over and you can go back to enjoying everything else. Not this roller coaster. You can’t get off. Sure, you can question yourself about why you did the things you did that put you on this ride but you still can’t get off. No emergency break. No red flag. So what’s the option now? Get use to it? I don’t like this ride. I don’t think I will ever like it and I don’t think anyone that is on it will ever like it.

It comes with its share of thoughts and emotions…..

I read a story yesterday about a guy that was diagnosed at a very early stage. Did surgery to remove it and told him they would continue to do the skin checks but no further testing was needed because it was caught so early. No scans, no x-rays, no blood work, no lymph node removal, no nothing. Zoom forward 5 years and he developed a cough that wouldn’t go away. No big deal, he was taking over the counter medicine for it, figured it would go away eventually. Then he started getting really bad headaches. This prompted his wife to take him to the emergency room. After testing they found out the melanoma was back and with a vengeance. They opted to go to MDA for treatment. 7 weeks after he was informed the melanoma was back he passed away. Throughout those 5 years he kept up with his scheduled appointments. Always got the good to go. No worries. See you next appointment. He didn’t know the full story about melanoma and his wife didn’t either. The doctors said no big deal so must be no big deal.

This story is what is causing my panic attack today. I have not been referred to an oncologist which would seem like the logical next step since melanoma is Cancer! There was no order for blood work. She was going to order an x-ray but since I am already having the chest CT then there is no point. (I get that part and I am thankful I at least have those). No need to remove lymph nodes for testing. I go for more biopsies on Monday. I will ask her if she was in my shoes would she be following the plan that has been set for me. There are no safety harnesses on this roller coaster. No seatbelts. You can’t pray to get off the roller coaster because once you are on there is no turning back. You are stuck in that seat for life.

So here is what I will pray for. Please let me stay on this ride for a very, very long time. Please give me the strength and knowledge to ask the questions that need to be asked. Please help me with my panic attacks by reminding me I am not on this ride alone because you will never leave my side. No matter how many flips, twist, turns, jolts, or loop to loops, you will be there. I know through you anything is possible. Amen!

Nervous

As the time for my next chest CT is approaching, one week from today, I find that I am getting more and more nervous every day. I know it's completely understandable but how to deal with it is what's working on me a little, okay, a lot! Right now I am just trying to remind myself to breath. Worrying about whether there is change in the nodules in my lungs that were found long before I heard the word melanaoma. Worrying about if those nodules are related to my melanoma diagnosis.

I know all the things to follow: worrying won't get me anywhere. Pray. Have faith and hope. Stay positive. I say these things all the time. Up until now it has truly worked. I think not knowing about melanoma when I started having the scans helped with dealing with those appointments. No big deal, nodules, could be a number of things but no change from the first one so no worries. But now as the time approaches I can't help but wonder.....Stay positive. Pray. Have faith and hope.

I know what I will do. I will go for the scan. I will go see my lung doctor afterwards. I will inform her of the melanoma. I will wait for her to review the scans and for her to tell me if there is any change.
It is okay to be nervous. It is okay to worry. Regardless of the outcome I will stay positive. Pray. Have faith and hope.

I believe the key is to not let the nerves or worry take control. Don't let it overpower you. Remind yourself of what you tell everyone, no matter what it will be okay.

Lost

That's how I was feeling today. Actually how I have been feeling for several days. Lost in my own little world. Lost in my mind. Trying to figure out how to get back to me.

Ok, I started writing that yesterday and was no clearer than a muddy glass. Today I put a voice to why I feel lost. Melanoma? No. I know that no matter what happens there God is with me. So what then.....
My baby is grown. He moved away. I have been a mom for more than half my life. When my daughter moved away I was devastated. Cried like a baby. I still had my son at home. I still had 10 more years of raising him. I have known this day was coming. Pretty much my top thought all last year. What am I suppose to do? My kids have been my life. My world. I know I am not the best mom in the world. Far from it but I do know that I love my kids with all that I am. I would give my life for them.
I have been going through the motions since he moved. Wake up, go to work, go home. Same every day. Existing. Unsure of what I am suppose to do now. Trying not to think at all about anything. My husband is always so supportive. Always letting me know he is here for me. I finally told him today why I am depressed. That he doesn't' understand and that I don't think anyone understands. I know he loves me no matter what. Told my daughter that I am depressed. She is always a blessing. Sends me just what I need to hear. Thanks to their support and my sister's support I was able to clear away enough mud to think. Why is it that this has you so down? Because I never really had a life without my children and I don't know what I am suppose to do now. 
I hear this voice, barely a whisper through my tears, "how is it you don't fear melanoma because you know you have God to make that journey with you but you don't see that God is making this one with you too. You are more than a mom. You are a wife. You are a daughter. You are a sister. You are a friend. You will get through this. It's okay to cry. Don't lose sight that you are still needed. Still loved. And maybe, just maybe it's time to find yourself."

Why Alice

I don't know a lot about the story "Alice in Wonderland" but that's kind of how I feel. Every since I heard "Melanoma" I feel as though I have fallen through a rabbit hole. My world is so different. Nothing seems the same. What I thought was important no longer matters. I feel as though I have entered some altered universe and it is just too wild to take in. And I have only just entered this passage. Normal is no longer normal.
Sometimes I feel like I am speaking another language. It is like no one understands me. My world is spinning. "Biopsy from your arm was melanoma. We have scheduled surgery already." Someone wake me from this dream.
Biopsies every 3 months till we get all the "spots". Take them all!! Take them all now!!! Shhhhh. Too many, close together. Confusion on what came from where. In due time.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths. Proverbs 3: 5-6

The core of me is still solid even though some days I have a hard time remembering that. I know that I am on this ride for a reason. I know that I am not on this ride alone. I know that no matter what happens on this new path, I will be okay.

Where to start

I was born and raised near Galveston, Tx. The youngest of 7 kids. I am a mom to two wonderful children. I am a Nana to 4 amazing grandchildren. My first experience with skin cancer was in 2008. I went to my doctor for a mole on my back that was bothering me. Before it had always appeared brown and never caused issues. It turned pink and was hurting like no other. A blessing from God actually because when I went to the doctor he looked at it and said he wasn't worried a bit but the spot I had on my face he was concerned about. My face? The spot on my face didn't hurt. I thought surely he was crazy. Then he comes in the room with a card for someone he wants me to see. Kansas City Skin and Cancer Center. What??? As soon as I got home from that appointment I researched until I found a mole that looked like mine. Basal Cell Carcinoma. When I went for that first appointment at the dermatologist he said I think it's Basal Cell, are you familiar with that. I was. He scheduled surgery and then I started my 6 month checks.

In 2010 I wasn't able to keep up with those appointments. In 2011 I decided I needed to go back because there was an area on my nose that I had been questioning for a while. When I called to get in to see the person I had been seeing he could not see me for 4 months out but they had another lady that was going to be starting and she could see me. Another blessing from God. At first, didn't really like her. She prescribed me a chemo cream for my face that my insurance wouldn't cover. I had to call back to get them to call something else in. This took a few days but finally started using a cream. To say the least, it is not a friendly cream. When I went for my first full body check with her she said that there were about 20 "spots" she wanted to biopsy but would do them over a period of time. Said these were "different" than what I was treated for on my face. Asked if I understood that. I did. She did 2 to start. Still thought she was a little crazy because these "spots" she was worried about to me looked like freckles. I have LOTS of freckles. Next appointment for more biopsies she told me that one of the first 2 had come back Melanoma. Now, to touch on why I say seeing her was a blessing. I am a VERY "spotty" person. Have been for years. The doctor that I was seeing before never showed any concern over these "spots". I believe all things work out the way they should.

Rewind to the end of 2010. I was loosing weight. Didn't really notice till one of my sisters said something to me. She had just seen me a few weeks prior in Tx when I went for the birth of my last granddaughter. She then came to KS to see me and first thing out of her mouth was "are you loosing weight". No. So I weighed myself. Hmmm. I had lost. Everyday I got on the scale, everyday I was a pound lighter than the day before. So started lots of testing. Doctor wanted me to have abdominal and chest CT. Insurance declined the chest CT but approved the abdominal one which showed two nodules, one on each lung. I was referred to a lung doctor. She in turn ordered a chest CT which was approved. Now I go every 6 months for a chest CT to check the nodules. The last one was no change. Of course the first thing out of my mouth to the derm after she said Melanoma was about the lungs. She said it was good that I was having those done because she would have ordered a chest xray. I am scheduled for my next CT on the 31st of Jan and more biopsies on Feb 6th. I was worried the CT would be around the same time as the biopsies so it was a relief to me when they called for the appt that I would have CT results before my next round of "slice and dice". The weight loss did stop and I did put some of my weight back on. Never got an "answer" to the cause but I know it was because I needed to have those test.

Being raised in Tx, we spent lots of time at the beach. Never heard of such a thing as skin cancer when I was growing up. Got my fair share of sunburns back then. Some extremely bad ones. As I got older it was all about being tan. Laying out in my parents yard with my other sister, rubbing the baby oil on and moving with the sun as it changed positions. Moved to Ga when I was 17 but my "love" of the sun didn't change. Went to the beach there. Laid out there. Moved to Ks when I was 26. Didn't change then either. Laid out. Went to the tanning beds. Went to outdoor events. Got cooked on several occasions. One that required me to go to the doctor because the burn was so bad my skin was bleeding. Looking back....what was I thinking??? I stopped tanning years before I was ever diagnosed with skin cancer but seriously.....all I can ask myself now is what was I thinking.