Sick of it all!

I'm in another one of my feel sorry for me moments. But dammit, why can't anything be easy for me?

You know every blog or article I read on Melanoma is about tanning and tanning beds and the young. Well, I'm 43 and I have Melanoma and I don't tan! Yes, my youngest child is 18 but I still want to see her get married and I still want grand kids just like any other parent! Let me back up a little so maybe you'll understand my bad mood.

About 10 years ago I went to see a dermatologist for the first time. On my first visit he said I had rosacea and prescribed me some lotion and pills. He didn't look at any of my moles but I was scheduled to go back in two weeks and I assumed at that time he would check my moles. When I went back he said everything looked good with my rosacea and to continue using the lotion but not the pills and he would see me in 6 months. That shocked me since I was still waiting for my body check.

I said, "Wait a minute!". I told him he hadn't even looked at any of the moles on my body and I thought that is what a dermatologist is supposed to do?? I guess that made him mad because he said, "Fine, get undressed and I'll look you over." I said never mind because I didn't feel comfortable being undressed in front of him with the attitude that he had.

I went to the front desk to check out and she tried to give me a 6 month appointment but I told her no that I wouldn't be coming back. The doctor came up and told her that there was "no charge" for my visit today. A couple weeks later I got a letter in the mail dismissing me from the practice. Way to cover his butt huh?!

So now it's March 2012 and I go to a different dermatologist and I show him the mole on my butt cheek which he biopsied. A week later he brings me back to his office to tell me that it is malignant Melanoma. He sets me up with a surgeon and tells me once I get this taken care of he'll have me back and he'll do a thorough body scan - head to toe.

Cut to July 2012 and I'm back in his office for my "head to toe" check. Well, that is a joke. I had to force him to inspect my entire body - including the areas that my bra and panties usually cover. My son was also seen that day and I had to force him to go back in the room and do a complete body scan on my son even though he knew the mother - me - has stage 3b Melanoma!!

What is wrong with these doctor. How can you say you have given someone a complete visual body scan when you don't even have them take their bra or underwear off?!! Yes, you can get Melanoma on you butt - I did!!!!

Now on to my oncologist. I chose the oncologist that my dad has seen for the last 18 years through lung cancer and Melanoma but I find that I don't like him. One, I've seen him twice and he has not even touched me. The nurse is the only one who has felt my lymph nodes at all. He's not a Melanoma specialist - there aren't any in this area - but it disturbs me to talk to him about my cancer and treatment with Sylatron and see him googling for the information on his iphone in front of me. His practice can also do blood work at their facility which is great for those coming to the chemo suite and need blood work at that very moment before they can receive chemo.

However, for me that isn't a plus. If I have my blood work through Quest Diagnostics, which is my insurance carriers in network lab, I don't pay anything out of pocket but if I have blood work at the doctors office I have to pay a $45 copay every time. Since I give myself Sylatron injections once a week at home - there is no emergency for my blood work to be drawn and tested at their office. I can have my blood drawn at Quest and my oncologist would still have the results the next day. I know this because I had blood work drawn at Quest for my primary doctor a couple months ago on a Monday and saw my doctor Tuesday, the next day and they already had access to my blood work results.

So, I have told my oncologists office that I will not have any blood drawn at their facility due to the cost unless there is some type of emergency and they need it within minutes. I have also talked with my insurance company and was told that they can't force me to have my blood drawn at their facility. I also asked to have my care transferred to another oncologist who is part of the same group but practices out of an office that is a little closer to where I live. Gas is not cheap these days and besides it would be easier on me to not have to travel so far when I don't feel good, am running a fever and driving myself.

I think all that pissed off my oncologist. Yesterday evening I called CVS-Caremark to order my next month supply of Sylatron. They put in to have it delivered next Tuesday to make sure that it arrives in time for my Thursday dose next week.

I get a call this afternoon (4:55pm) from the nurse who said that the oncologist has denied my refill of Sylatron and said to tell me to have my "new" oncologist prescribe it and that I need to get into see him asap. That's just fine and dandy but they didn't go ahead and set me up a appointment with the new oncologist who is in the same practice! And tomorrow is Friday!! So now, I have to call tomorrow and see if they can get me in asap because until I see the doctor my Sylatron has been denied!!

Why can't I find these wonderful doctors that everyone else has?? I'm just so sick of it all. How can you be your own advocate when the doctors have all the power and if I try to stand up for myself too much they can dismiss me from the practice and then I would really be screwed because this practice is the ONLY oncology practice in my area!!

I wish I had someone to talk to....

Guess I Should Update...

Guess I should update. I had surgery Friday to remove the rest of my lymph nodes. Scary and emotional all over again. Surgery went well. My surgeon said it would take about 2 weeks to get the results back. It seems like forever already!

I went home with a drain tube inserted in my thigh that I have to drain every 4 to 6 hours and also keep track of how much fluid/blood is draining. The had bandaged my leg from my thigh all the way down to my toes with what looked like ace bandages but was really some other type of material. I guess that was to help control swelling. The wrapping around my heel and the top of my foot where they both meet my ankle was hurting so bad the first night and the next day because they had wrapped it too tight in that area. By the time Tom got home Saturday afternoon, I couldn't stand it any longer and had him cut it away to just above my ankle. That felt so much better once the pressure was relieved. Have a pretty nasty incision stapled all nice and ugly also. I didn't realize how painful it would be. I'm so glad they sent me home with crutches to use and pain pills!

My recovery is slower from this surgery but I think I'm doing pretty good. The first night home I managed to get in bed. I had to sleep flat on my back which isn't comfortable because I'm a side sleeper. By morning my back was hurting. I couldn't get up by myself because when I tried the pain from my stomach muscles and thigh were out of this world. Tom tried to help me but it was still awful. I finally had to hold onto the headboard and it use it to move my upper body and then Tom held my feet at the ankles and slid them sideways over the bed. I was like a beached whale! After that, I started sleeping in the recliner.

I am back in my bed now and it feels good but still not perfect. I still have to be careful moving around and the drain tube sticking out of my thigh is a pain. I'm so worried I'm going to accidently yank it out of my leg in my sleep. Ouch!

On Monday I saw the surgeon and he said everything looked to be healing well. He had the result from my PET scan. Thank you Lord! It was clean. :-) He thought he had told me Friday before my surgery but he hadn't and at that time I decided not to ask him. I was so stressed over the surgery that I decided I didn't want to find out that day just in case it wasn't good news. I go back to see him next Monday and hopefully at that time I'll be able to have the drain removed. Crossing my fingers!

Anyway, that's what's happening in my world! Over and out.

Ready or not...

Had my first mammogram today. It was a little uncomfortable but not half as bad as I thought it would be. It helps to have large boobies I guess. LOL! Anyway, it was clean. One less thing to worry about.

I have to be at the hospital tomorrow morning at 8am for my surgery to remove the rest of my lymph nodes in my right groin. Keep me in your prayers! Now I'm off to get some sleep.

What Cancer Cannot Do

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Author Unknown.

Bummer...

Finally out of my slump (somewhat) and I'm ready to share my week so far. My surgeon's office called Friday and moved my follow-up from Thursday to Monday, May 1st. I was preoccupied all weekend wondering if the  pathology report from my SLNB was in.

 My appointment was scheduled at 2 pm so I went to work for a few hours that morning. It was my first day back since having surgery April 17th. Felt good to be back but also a little nerve wracking knowing I was going to the doctor in a few hours. 

I'm so glad my mom and Tom went with me. The results weren't good. He told me they had found cancer cells in 5% of the lymph node. I can't say I was surprised. It was more like an out of body experience. I just didn't feel anything for a few minutes and then I pulled it together and somehow made it thru the rest of the day. 

I went for a PET scan today. I was worried about that. I thought I would be enclosed and then have something that lowers above you while you are inside. Luckily it was nothing like that. However, I did pop an Ativen just as we arrived. The scan itself was a breeze, I even dozed off. Now the iv insertion before the procedure is a different story.

I am finding that my veins look beautiful to the nurses until they poke me - then the vein blows! Talk about painful. During my first surgery they numbed the area with lidocaine before trying to insert the iv which I am thankful for since it took them 3 or 4 tries to get it inserted but other than the prick for the lidocaine I felt nothing. I wasn't so lucky with the PET scan today. They don't use anything to numb the area ahead of time and she had to poke me 4 times!! Oh, talk about painful but she was very nice and tried to be as gentle as she could. She even used a pediatric needle on the 3rd and 4th tries. Hopefully my surgeon will have the results by Friday when I go in for surgery.

Yes, surgery again. Friday morning my surgeon will go back and remove all the lymph nodes in my right groin. I pray, oh how I pray that these come back negative! It will be another 2 weeks of worrying and waiting. In the meantime I will have a drain tube attached which will have to be emptied and measured twice a day. He said the drain could be in anywhere from 1 to 4 weeks. That sounds just peachy since I have no vacation or sick days left. I won't have any until September! Just one more thing to worry about - no paycheck, insurance, bills...Uggghhh!!!!! 

Reminder: Stay out of tanning beds, use sunscreen, have your moles checked! Once you get melanoma it's like the proverbial monkey on your back - it's always there, it never goes away.

Shoulda Woulda Coulda...

So I've spent another day doing nothing but searching the Internet and feeling sorry for myself. Don't judge me. I have a right! I did wash the dogs today so at least I did one thing productive - 2 things since I have 2 dogs!


Mom fixed supper tonight and her cousin Evelyn and my brother Ryan ate with us. Watched Big Bang Theory - love that show, and now I'm back to Googling melanoma. I must be a masochist!!


I wanted to explain a little further how my melanoma journey began. I don't know exactly when but, sometime in January 2012 I noticed that a mole on my right butt cheek, that I've had for as long as I can remember, seemed different. I think the color was a little different and it was a little more raised. Before this it had always been brown and looked flat but I know if you ran your finger over it it was a little raised. Had always been like that. I vaguely thought that maybe I had irritated it somehow. I really didn't dwell on it too much but at some point on or before January 28, 2012 it must have started worrying me a little because I took a picture of it. However, after that I forgot about it again.


Then the last full weekend in February my sister, Wendy, was down from Orlando. By that time it had changed drastically. It now was very raised and seemed larger around. It was also pink and crusty/flaky/scaly looking. Sort of looked like a big irritated wart. I showed it to my sister and mentioned I was a little worried about it but hadn't made a dermatologist appointment yet. It was a local "holiday" weekend in town and we were busy having fun and she didn't really pay much attention when I showed her, just agreed I needed to get it checked. 


Sometime in the next week or so, I did make the appointment. I also took another picture March 17, 2012 - 12 days before I saw my dermatologist. Of course by then it was too late to catch it early. I played ostrich for about 2 months. It doesn't seem like that is a long time to some but that just goes to show how fast melanoma can pop up. It's a nasty little thing and sometimes it grows very very fast and other times very very slow. 


Pictures


These are the ones I took on or before January 28, 2012. 



This is the one that I took of the same mole on March 17, 2012:


If there's anything that I've learned it's- GO TO THE DOCTOR AS SOON AS YOU NOTICE SOMETHING DIFFERENT. If it makes you do a double take or go hmmm - then get it looked at!


Tootles!

Bummed...

So here I sit. Another day wasted. I've decided to not go back to work until next Monday. That gives my bum a little more time to heal. To be honest though, the real reason I'm not going back until Monday is because I'm in a funk right now. Feeling sorry for myself, worrying about the results of my SLNB. I'm so down right now that all I want to do is sit in this freakin' recliner and have a pity party of one (Me!) for myself.

My surgeon did write me a work note stating that I would need to be out for 4-6 weeks but I don't know how he came up with that time frame. If I really wanted to, I could manage going back to work today with little to no problem. I just don't want to. I like feeling sorry for myself right now. I know, I know, it's awful of me isn't it? I know it will do me good to get back to work and I need the paycheck so I will force myself, but NOT until Monday.

I did go with my mom and daughter to Lehigh to visit my brother 'n law who is in the hospital. He's diabetic and also has gout in his knee - he's the same age as I am. On Sunday he was running a fever and his knee was swollen. He doesn't have health insurance so he went to the emergency room and they admitted him. He's hoping he will be out tomorrow. I'm praying for him. He doesn't take his insulin or his gout medication because he can't afford to buy it. His sugar was around 500 on Sunday evening before he went to the hospital. It sucks when you have no insurance. I checked online and was able to find patient assistance programs for each of his medications and I think he would qualify for the programs. Once he's out of the hospital, I'll help him complete the applications so that he can take them to his doctor.

We also stopped at Wal Mart while over there. My daughter, Hadley, needed some make-up and a new flat iron. We also had her finger sized for a class ring at the jewelry department and will order her ring online thru Wal Mart since it is so much cheaper than ordering thru the school's link. She is going to Universal Studios this weekend for Grad Bash and looking forward to it. She graduates June 2nd. She's my youngest. Time sure does fly!

So it begins

I know it sounds morbid but I've always known I would get cancer. I wasn't 100% sure what type but, I knew. Thursday, April 5, 2012 I was diagnosed with melanoma. I am 43 years old. I have 3 beautiful children. Cody 24, Dustin 22 and my daughter Hadley 18. Hadley is a senior in high school and graduates June 2, 2012.

Thickness: At least 2.6mm
Growth Phase: Vertical
Ulceration: Present
Mitotic Rate: 5/mm2
Angiolymphatic Invasion: Not Identified
Features of Regression: Not Identified
Lymphocytic Host Response: Non-Brisk
Pathologic Stage: T3b
Clark's Level: IV

So it began. 

In 1994 my dad was diagnosed with lung cancer. He was 46 years old. I was 25 years old. Until then I had never thought of my dad as old. He changed before my eyes after that diagnosis. 

My dad had been a smoker since he was about 13 years old. At the time of his lung cancer diagnosis he was a 2 pack a day smoker. He quit the day he was diagnosed. You might say he closed the barn door a little too late but it's never too late to stop smoking. 

He went through chemo and radiation to shrink the tumor and then surgery to remove it.  Part of his left lung and a couple ribs were removed and then more radiation and chemotherapy after surgery. He was cancer free for 16 years.

So it began, again. 

In 2009 my dad was diagnosed with malignant melanoma. It was found on his left side under his armpit. It was in the area that he had radiation 16 years ago. Was it caused by the radiation? Maybe, maybe not. My dad had been seeing a dermatologist for years but even with his previous cancer diagnosis, the doctor had never done a full body scan.

He went through surgery to remove the melanoma and also had a SLNB. The SLNB showed that there was a 1% trace of cancer cells in the lymph node. He underwent surgery again to remove all the lymph nodes under his armpit. After that he started interferon treatments. He finished treatments October 2011 and is NED at this time.

Removal of lymph nodes

Removal of lymph nodes

Removal of lymph nodes - hole where the drain was inserted. Also the healed scar that starts in the top middle of his back and runs under his new surgery is the incision from his lung cancer surgery in 1994.

Under arm is the original site of the SLNB

So it begins.

I think it was sometime in January 2012 that I noticed the mole on my right buttock seemed different. I ignored it. I remember the last full weekend my sister was visiting. I mentioned to her that I had a mole on my butt cheek that I needed to have checked out. By then it was definitely looking strange. I showed it to her. She agreed and then we forgot about it. 

By March I couldn't ignore it any longer. It had changed from brown to red and was raised and scaly. It looked like a wart that had been irritated. I made an appointment with the dermatologist for Thursday, March 29, 2012. I hadn't seen him in 2 years. My doctor looked at it and said, eww! He thought it looked like an infected wart also. I assured him though that a mole is what it had been. A biopsy was done. I was told that I would get a call the following week with the results. 

While at home for lunch on Thursday, April 5, 2012, I received a call from the dermatologist office. They wanted me to come in that day. I was told any time I could get there would be fine. I'm not stupid. I knew it wasn't good news. Thankfully my mom happened to be in town. She went with me. It was probably harder on her because of everything she has been through with my dad. The research on Melanoma I'm just beginning, she's been doing for 2 years.

The doctor wanted me to see the surgeon ASAP. They called but the earliest I could be seen was the following Thursday, April 12, 2012. They were out of the office the next day because it was Good Friday and then also out Monday, Tuesday and Wednesday the following week. My mom was freaking out because of me having to wait another week to be seen but there was nothing more that could be done. 

I saw the surgeon Thursday, April 12, 2012. He is the same surgeon that my dad sees. Blood work, ekg and chest x-rays were done that same day. Surgery to remove the melanoma and SLNB was scheduled for Tuesday, April 17, 2012. 

I am also a type 2 diabetic and I haven't had my sugar under control over the past year. That is not a good thing when having surgery. Uncontrolled sugar can impede healing and cause a host of other problems. I had also been out of one of my diabetic pills for at least 6 months. On Friday, April 13, 2012 I met with a new family doctor to get my meds back on track. My previous doctor had went on  a medical leave a year before and never returned. I'm a procrastinator and had never gotten around to getting hooked up with another doctor. Diabetes is easy to ignore when it's not showing any outward signs. 

The day of surgery we had to arrive at 7:00 a.m. for the SLNB and surgery was scheduled for 9:30 a.m. Even though I prick my finger to test my blood sugar and I inject insulin in my belly, I am NOT a fan of needles. I was stressed about the lymph biopsy and I had fear of being put to sleep. I had never had any surgery or been put to sleep. I am a nervous nelly with doctors. I take a valium before dental cleanings! 

The SLNB went alot better than I expected. The first injection was the worse. It felt like a bee sting but only last for a few seconds. After that I really didn't feel too much. I know the injections were laced with lidocaine also. Once the injections were done, all I had to do was lie very still while the pictures were taken. I closed my eyes and concentrated on relaxing. 

Once that was done, we went down to check in for surgery and wait. Of course they were running behind. What doctor isn't. :-) I didn't mind. My husband, Tom, my parents, brother and one of my sisters were there with me. I have a great family. 

I was finally called back and that is when my panic really started. I was not worried about the actual surgery. I trusted the surgeon. He's the best melanoma surgeon in my area and a wonderful christian. I was worried about the anesthesia. My big fear has always been that they will do something wrong, or I might be allergic to the meds, or they might not give me enough meds and I will feel everything but not be able to tell them. I remember them putting the mask over my face and telling me it was just oxygen to help me relax. The next thing I remember is waking up with a headache and a pain in my ARSE!

The surgeon said it all went well. He didn't see any signs of cancer or spreading with the naked eye. Now we wait. It will take about 2 weeks for the results to come back. Two days after surgery I went for my 1st post-op visit. The incision in my groin and the one on my butt looked fine. I go back again for follow-up in 2 weeks and the results will be in by then also. 

Now I'm home trying to get comfortable. Having an approx. 8-10 inch cut sutured on your butt cheek does not make it easy to sit. I've spent most of my time since surgery leaning or lying on my left side so much that my hip on that side hurts. 

Adding a few pictures. Because of the area that my melanoma was located, it's not easy to take pictures that aren't compromising.

SLNB - Right Groin

Radical Resection - Right Buttock