Wednesday, November 9, 2011

It's BACK!

Is everyone sitting down? I'll wait. I'll stand...ouch.

I have had about 3-4 weeks of sleepless nights and painful back aches. I tried massage, acupuncture
 (almost killed the lady, so painful), Ice and heat packs. This can happen since  I went back to dancing, Ballroom. I was feeling great and I figured a pulled muscle, maybe a broken rib.  I was and still am dealing with little issues from the summer fun radiation to my face. My energy level has been great and I have been starting to feel normal.  Then this back pain started that twisted into the front of my belly. I swore I had another hernia. I was just about to go back to working out and yoga. But, stretching made it worse.

I was going to make an appointment with an orthopedic spinal doctor on LI.  I knew (& Paul told me over & over) to get it done in the city. Then it's on record and my Doctors have a good scan on file,  just in case if I even needed to look at a reference in the future. I also could use a scan of my body.

That's when I called and  got MRI of the spine appointment with one of my fab doctors at Msk. The nurse didn't like that with all the steroids I was on, I still had pain and inflamation. I shouldn't have that.
I went in on Thursday at 10am.  After the scan, I walked my way up to  the Mskcc main building to get my results.  I was trailing the beautiful aroma of Ben-gay ointment all over the city. I smelled so nice!

My lovely Sarcoma Cancer non-friends have metastasized into my back :(

I have three tumors on/in the bone. Two little ones and a medium size on the lower back that's attatched to the rib cage. That's the one that hurts so much. The pain is unbearable. I haven't slept in weeks and when I do I have to sit up. It's so hard to do anything, sitting is awful.
Pain managent dropped in and I have been dealing better with it. Ok...that's a lie...I told them what to give me! Want to hear my nightly routine? Paul puts Lidocaine patches on for me so I can get some sleep. I have a pain, sleeping pill mix...with Ativan, Lyrica, Mobic, steroids....All of the above! I barely take the pain pills, they don't work. But, my friend and support told me how to take them so I stay out of pain. I am listening!

Learn about your medication. Ask the nurse what it is. I google everything and try to figure out if it's worth taking. Sometimes to many meds together, don't work. One pill sometimes does the trick. Unfortunatly, I have brain, inflamation and pain issues! But...I know the Ativan will knock my butt to sleep. So, I don't take the sleeping pills.  I drink sleepy time tea with Melatonin. Steroids I take during the day...they make me hyper at night. Same with the Pain pills. It's like caffiene in my system.

They also gave me something to balance....My white cells were off. Where are those perscriptions? Paul. Meanwhile...I will be balancing all by myself.

I am looking in any new or old ways to cleanse and to keep my immune system up. Nance sent me a great link about Natural oils that break the blood brain barrier and can cure :) I will post the link. Any suggestions out there? Willing to travel for some good body energy.

Image Guided Radiation

I may be starting my tumor removal on Monday. Dr Josh Yamada will be performing Image guided radiation on the tumors and making them POOF...dissapear. It is an amazing non-surgical procedure.

Google this, read and tell everyone!!        image guided radiation, Mskcc

Bloggers & friends, please pray that my Pet scan is clean. I may not be NED anymore! Actaully, I never was. Funny...I told you! It's the pathetic waiting game and I wasn't wrong. My poor body just won't fight! I knew I was off. That is why I fought for my Doctors to pay attention to my head and look....I was right. I hate being right.
I will not be taken over by my stupid  body cells that refuse to listen to me! Ned will happen again, oh yes it will.

I didn't blog about this right away. I should. I get so much support from all of you. My dilema, maybe you can help. I know some close friends that read it and I wasn't ready (and still not) to share. How do you continue the best therapy...blogging without dealing with the annoyance of a town news flash? I only want and wanted to tell those close to me.

The saga continues..........


Sjn said...

so sorry for you. I unfortunately, am there with you, fighting another recurrance. My scan from Monday showed 4 lung nodules. From one lymph node "to watch" 3 months ago to 4 new "opacities". The largest already over a cm. I've had VATS the past 2 Decembers, now again this year?! Or what? Shrink them with IRMT first? or Cyberknife?
I hate all of this... I was thinking after June's surgery and September's radiation, I would be NED for Christmas this year, but there is no Santa Claus for Sarcoma patients...

The Astonishing FartMan said...

I'm so sorry. But it seems like you weren't at all surprised about this, were you? For bettr or worse, we know our bodies, we know when they are "talking" to us and telling us "something just isn't right." (It would be nice if the doctors would always listen to what our bodies are telling us.) We would like to ignore what our bodies are telling us, and sometimes we do.

I know what you mean about not wanting to broadcast your news. Reporting bad news feels like letting people down, and you don't want to make others worry and feel sorry for you all the time. Well, I don't feel sorry for you ALL the time. Just SOME of the time. Because I know you are blessed with a loving husband who does everything he can for you, and wants to do more. So I can't feel sorry for you about that! Just as I have a loving wife, the blessing of my life--so I feel sorry for people who have never had that kind of bond with another person.

My body has been talking to me a lot lately, too, and I don't necessarily like what it's been saying. I wish it would just shut up. I'll be getting a scan next week (my first full body scan since May) and am hoping that whatever it is exactly that my body has been complaining about is not the Big Thing, but just a nagging Little Thing. I've spent so much time and effort trying to get my mind prepared to handle bad news--if the news isn't bad I won't know what to do. Isn't that weird?

Wish I had some good advice about the best way to communicate these things to friends and family. You know, sometimes I just wait for people to ask, and if they don't ask, I don't tell them. Some people don't want to ask because they don't want to make me dwell on my illness or don't want to remind me that I'm sick, as if that's a piece of information I might forget! Okay, I would forget if I could, and sometimes I do forget. For about 23 seconds. But then wham! Like a smack on the side of the head, I remember. Because there plenty of reminders. So there's not really any way to "avoid remembering" or to forget I have cancer. It would be nice if we could. But we can't. So instead, I just try to "live with it." It ain't always pretty, but all in all, I'd say I'm doing a pretty good job under the cicumstances. And so are you!

I'm saying the prayers you ask for, and a couple of others that you are probably too humble to request.

Dr. H said...

just to leave a trace, that i've been here and praying that you'll gain more strength physically, immunologically and spiritually...