Tattoos and I am ALIVE

It’s been days since I’ve posted and like you my life is still going on and somehow this cancer thing just won’t go away.  I will try to compile several days into one but I’m long-winded so here goes. Had the bone scan week before last and still haven’t received test results. I will get both the pet scan and bone scan results tomorrow Tuesday…will I sleep tonight? probably not…and don’t yell at me, can’t control the anxiety sleep monster….I am still struggling to remain positive and have a good attitude but those that have walked and stepped in my shoes know how very difficult this is.

Before the pet scan story let me share this with you. I had just about had it with the swelling lymphodema arm thing. I was advised to call the American Cancer Society so I did….and told them how I still needed a compression sleeve and still waiting on Medicaid approval for such sleeve and how rude the woman who owned the first shop had been. The kind gentleman on the other end of the line said, here is a list of 4 places close to you zip code that you might call and see if they can help you by billing Medicaid. So I called a shop in the Rice Village area which is VERY close to where I live. Not 25 miles away like the other shop….Explained everything on the phone to a nice lady and promptly drove right over there. An elderly lady came out, she was the owner of this shop, measured my arm and sat down with a compression sleeve and put it on my arm. She said, “who is your case worker”, I said, “don’t know what you are talking about?  obviously I don’t have one!” she replied. “well, you should honey., you should have been in a sleeve right after your surgery and when was that?”…”well mam, 4 weeks ago”. She said my arm was very swollen up and did I know that my arm will not go down? Shocked, I said, no, I did not know that and she proceeded to tell me that I also needed physical therapy and instructions on how to care for my arm for the rest of my life. DAMN…nobody has ever told me this, not even the surgeon that did the operation to remove the cancerous lymph nodes…everything from him had to be pulled out and if you have never had cancer before, how in the hell would you know to ask certain things. I already told my surgeon that a therapist should be part of their office procedures, it should be offered to women with breast cancer and an advisor to tell people what to expect. NONE of this has been part of my journey. Is this because I’m government paying…?She said my arm was BAD…hello…my arm is BAD…It has been hurting and feeling like a balloon about to pop wide open with a huge bang!!! I could tell she felt sorry for me and you all know I hate that sorry shit…but she sold me the sleeve for what it cost her, $35.00 and really I need a couple of them. The OTHER SHOP lady told me the sleeve was going to be $210.00!!! Now, this thing is not pretty, nude flesh-colored…, I have brownish skin, olive toned and it does not match my skin color…so I remembered that I had a tattoo sleeve set with matching leggings that looks real, so guess what, now I wear my tattoo arm sleeve over the offensive nude compression sleeve. Looks real folks…I’ll take a pic and post it for you!!! hahahaha

Now, flash forward to last friday…pet scan. I called the day before to verify my appointment and find out how long it will take, and what exactly was going to happen. I have found out that these things are important to me. “Well, you will have to check in again”…and I said, “NO YOU TOLD ME I DIDN’t HAVE TO DO THAT THE LAST TIME I WAS HERE!” It’s a pain in the ass to sit and answer the same questions, fill out the same paperwork, and wait and wait…so I got that cleared up. Then “is there an injection?” “No, Ms.VanBibber, there is no injection and the test last for about 30 minutes and your appointment is at 10:30 am. ” So, here is what really happened. I had to argue with the check in clerk that I was already registered and all I needed was my arm band…got that…then I was hauled off to the back room to get my radioactive  injection…WHAT? “I was told yesterday  on the phone  that there was not going to be any injection!!!” “Oh, who did you talk to?” “The person making the appointments that answered the phone!”. I got an injection in my HAND, then i had to sit with said injection and needle in my hand for 45 minutes and the pet scan was one hour and it was inside one of those machines that look like a MRI….very claustrophobic I am…I had to go to my happy place and stay there. And if I had know it was going to be an all day affair, I might not have inconvenienced my friend that went with me for moral support.  I complained loudly to the nice nurse that was giving me the injection and said, “It would be nice if all your employees downstairs were retrained and not give out the wrong information to people that are sick.” Mentally preparation is a must when you have this cancer…green dodo inside of you. It really works you over in your head and any help and ease is greatly appreciated by people that are in the same situation as me. MEDICAL people…please have some compassion and no yelling at me please…most or a lot of them DO ,and the information is crucial in someones day and their recovery and treatment. No-one wants to have someone cut, poke, stick you and not tell you WHY? It’s just not fair and makes a person crazy, and we are already crazy with fear, and much emotional anxiety. I have been a costumer for years, dressing many people for many plays, parties, events, all over the greater Houston area and I know my product and I was very careful if someone wanted a dress from say the 1940s to be a gangster moll, if someone wanted to dress and look like Cher or Richard Nixon, or a flapper, or a clown, Marlyn Monroe, Janis Joplin…a movie stars from the past or Rock Stars or just famous people……if I didn’t understand or didn’t know who a person was that I was portraying and my customer wanted to look like someone else, I would find out what the character looked like and what year this person lived, and how they dressed, I did research. I am and was always thorough in my work and folks, I really expect that people that know more about cancer, and hospital procedures to tell me what is about to happen to me. Common courtesy to your fellow man. If I put you in a dress and you were going to a Roaring 20’s Ball, you can bet that you had on something from that era or a good reproduction or representation of that era…so, if I can do my job with pride, why can’t you?

I have so much more to write but I won’t bore you with anymore today…I will save it up for tomorrow…and tomorrow at 10:15, I will be getting the results from my bone and pet scan to see if I can cancer anywhere else in my body. WOW…me…cancer…this was not suppose to happen to ME! I have so much to do, and things and places to see, I cannot let this slow me down.  I make sure I take advantage of every situation and event that I’m invited too, I go and never say I’m too tired, sometimes I am but I go anyway and I usually find the energy and the excitement somewhere inside of me. As you can all tell, dancing is my thing. I can hardly sit still listening to music, I bop and sway with any beat that moves me and it makes me feel alive…I am ALIVE….I drive my new Chicken Coup car right up to whereever I am going and I have a good time. This has always been me, I’m just living a little fuller a life now as full as I can possibly be.  Life is Short, Dance Fast.

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2 Responses to Tattoos and I am ALIVE

  1. anne carillo says:

    Sam: I have to go back & re-read this blog! The A-holes that should have quit the medical field long ago, or never gone into it, are the ones that last.
    I sent you another message, but your site insisted i already sent the same message.
    Sound like you’ve got some really smart friends. (Cancer survivors) Is the hormonal aspect of breast ca. being addressed? Primary breast ca. is estrogen driven. Is the treatment modality pretty much the same for you as primary lymphoma? My specialty was not oncolology, but I am speaking from an educated POV.
    I commend you on your intelligence & skills to face the Medical BEAST!

  2. anne carillo says:

    Sam: I have to go back & re-read this blog! I am furious in your behalf.

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