Monday, June 23, 2014

It was decided to do another MRI in September as planned. As you know me I’m never shy especially when it comes to my LIFE! There was no way I was going to wait 3 months to see what was going on especially if it is something and could be caught early. He agreed and I have another one set up for later next month.

Last Tuesday, June 17 was my CT Scan. I won’t bore you with the continued contrast vs. no contrast saga that continues but after waiting1.5 hours I was finally called in for the scan. I would get the results Wednesday before chemo. Again I received mixed results. Liver tumors again reduced in size (which is good since I worry about the liver), lung – no change, chest wall slightly smaller BUT (there’s always a but) the lymph node in my stomach almost doubled in size. Again, they are not sure if the increase is caused by cancer cells or an infection. Without missing a beat my Oncologist smiles and turns to me and says “so I’m guessing you’ll want to have another CT Scan in 6 weeks”. Does she know me???? So I get a redo on both the MRI and CT. Hopefully both will show nothing. I’ll keep you posted on when I’m scheduled so you can send me you positive energy.

Otherwise besides being tired I feel great!!!!

I hope you are all well and enjoying what seems to see warmer weather.

Put on you flip flops and Keep On Dancin’

Thursday, June 5, 2014

Lesson Number – Whatever

Standing Up For Your Self!

Just when things were going so smoothly, somebody has to upset the apple cart. It’s getting near that time again for scans. I know I can’t believe it either – time is passing so quickly. My last Brain MRI was March 3 and my next was scheduled that day for June 10. Well, last week I received a call from the scheduler informing me that the appointment I made over three months ago has to be rescheduled because the doctor’s busy from 10AM – 11AM and my appointment is 10:30AM. Next appointment available for morning is July 29. I DON’T THINK SO…… I explained that I wasn’t going to wait another two months to make sure the radiation has stopped the growth of the tumors. If there was something going on up there I want to know now so we could put together a plan of action. After a lot of shuffling of papers I was told they would have to get back to me. Fives days later after not hearing anything I called back and spoke to another scheduler and explained my situation. Again, a lot of paper shuffling and telling me they would have to get back to me. A few hours later sure enough I did get a call back with the same date of July 29. Again I explained the situation and finally agreed to June 11. My whole intention of a morning appointment was because I work full time and do not want to miss a whole day. I reminded them that my MRI appointment also needed to be changed and they said they would take care of it. Two days later of not hearing anything I called to confirm with the MRI Department and I was told not only was my MRI not changed but neither was my doctor’s appointment. So by this time I have had just as much as I was going to take. This is my life they are screwing around with, with no regards to what was in jeopardy of not catching something early. I actually had to explain that the reason for the doctor’s appointment was to review the MRI and if there was no MRI it was a waste of time for both the doctor and myself. So I sat and wrote a very diplomatic email to the doctor explaining the situation and eluding that maybe I should find another facility and doctor to do the test. I really didn’t want to do this since I really like the doctor but again as Bon Jovi clearly states “It’s My Life”! Not more then 30 minutes later I get a call from the hospital that all of a sudden June 10 at 10:30AM is back in the doctor’s schedule and my original appointment will be honored.

So what have we learned here??? Simply (and I’ve said this before) take charge and stand up for yourself. Don’t take no for an answer especially when you have followed all the “rules”. I know it’s uncomfortable to have to challenge things but don’t back down. I really don’t believe the doctor knew what was going on with my appointment and it was his staff re-arranging things. Don’t be afraid to take your concerns higher. If I did not hear from the doctor in a reasonable amount of time I would have taken it to a higher level – the CEO which I’ve been known to do one time in the past. This is not a popularity contest. Again – this is my life.

So that is the end of my lesson. I hope you take it to heart and learn you have to stand up for yourself especially when you health is at risk.

Now that you all know that my MRI is Tuesday I hope you all will send positive thought my way. I’ll keep you updated on results.

Next up – CT scan of lungs, liver, breast and bones June 17

Keep On Dancin’

Monday, May 19, 2014

It’s been a while since I’ve actually had time to sit and reflect on where I am and how far I’ve come health wise.

Unless you have gone through something similar (or are currently going through it now) it’s hard to explain the emotional rollercoaster you’re riding. One day you feel as if you’ll live forever and the next you wonder if you’ll wake up the next day. From personal experience I could tell you the latter is more evident as you approach a CT or MRI to check status of the tumors and effectiveness of the treatments.

This is when your support team comes into place. Family and friends, who are behind you to celebrate when the news is good and catch you when it’s not what you want to hear. I’m lucky to have a great group of people from all over the world who are there for me in good times and bad. Those who send me words of encouragement especially when I’m waiting for test results. Friends I’ve known for years and new friends I’ve made recently, friends I haven’t see in years as well as those I’ve never met face-to-face, all banding together for one purpose – to support and be there for me.

I have to be the luckiest person in the world (besides the obvious) to have so many people who love and care about me. I just want you all to know that I don’t take this for granted. I have EVERY card and letter you have sent in a “special” box. When I’m down or not feeling that great and want to just feel sorry for myself, that box is an arms length away and I go through and re-read your messages. YOU are the reason I am so strong and fight every day to make the next.

Thank you for being in my life.

Let’s all Keep On Dancin’ together.

Tuesday, April 29, 2014

Hard to believe April is almost gone. Not much happening on this end but didn’t want to go too long without any communications.

I apologize for not posting in regards to my liver and lung CT. So far so good – no change. What wonderful words. It’s getting harder and harder to wait for the results. You’d think by now I’d be use to it but I don’t think you ever get use to these tests.

According to the doctor I’ve lost more weight then she wants so they had to reduce the chemo strength. My goal is to gain 3 pounds by next treatment. Imagine that…. I actually have to GAIN weight!!! I bought a juicer/smoothie maker so I’ve been trying to have at least one a day. Next week is the big test to see if my new eating regiment is working.

Since I don’t like swallowing pills (which translates into Doreen not taking them) and the potassium pills are HUGE they prescribed potassium powder that I have been putting in either Gatorade or my smoothie and it’s been working. Last count showed it in acceptable range.

Hair is still patchy but I’m at a point where I don’t care (too much).

Next chemo is next week so I have one more week to eat as much I could.

I hope I get inspired soon to write since I have all these good topics going through the brain but no energy to put them on paper.

Hoping to put on my dancin’ flip flops soon.

Keep on Dancin’

Monday, March 24, 2014

I just wanted to give you a quick update. Tomorrow is the CT Scan on my liver and lungs to check on status. As always I am nervous since they lowered the chemo strength. I have an ECHO after to make sure my ticker is also in good shape.

I’m staying positive but know how fast things can change. I couldn’t do this without all of you. Your words of encouragement, hugs (both in person and through emails ), cards and emails keep me going. Keep me in your thoughts and prayers these next few days. I get the results and have chemo on Wednesday and will let you know as soon as I can.

Keep on Dancin’ - I know I plan on it………

Friday, March 7, 2014

As you all know Monday I had a Brain MRI to see if the radiation treatments I went through late summer were effective. I’m happy to report that the largest mass went from 9 x 5 mm to 5 x 3 mm. To my metric challenged friends that’s pretty small (.118” x .197”). The other three basically are gone with no evidence of any new growths. In the words of a very smart friend of mine "Primary lesion is decreasing in size and the remainder of the residuals are decreasing their prominence.” (Thanks B).

Next hurdle is the CT scan scheduled for March 25 to check liver and lung area. So I’ll be calling on all of you once again to send me good vibes. I'm a little nervous because they decreased the strength of the chemo due to the bilirubin issue.

Wednesday was chemo day which was typical. Get there on time (actually early) for your appointment and wait almost 2 hours before they even shove the needle in my arm. You think I would be use to this but everyone knows how patient I am!

Hope you’re all keeping warm and dry. Spring will hopefully be here soon.

Keep on Dancin'

Friday, February 14, 2014

Happy Valentines Day!

I can’t believe it’s been almost 6 weeks since my last post. I apologize for the long gap but with everything going on in my life I haven’t had the strength, time or brain cells to put together what’s been going on.

We made it into a new year. 2014 – Yeah Old news so lets get on with the last several weeks. Mark, my brother and I spent the end of January in Phoenix cleaning our dad’s house and putting it up for sale. Even with having chemo just days before I managed to contribute more to the clean up then I expected. Stubbornness can have its advantages. February 1, my birthday, was spent in bed for 3 days with the stomach flu. Mark and my girls took good care of me.

Because I have Gilberts Syndrome it gives a “false” reading on my bilirubin count. The doctor is aware of it but the chemo trial monitor has been giving her grief and threatening to take me off study unless we get it under control. I would still be able to get the chemo but wouldn’t be part of the study (can you believe I’ve been on it for over 2 years) and they would no longer pay the $10,000 cost of the drug. For some reason which I’m yet to fully understand, before my last blood draw the doc had me eat as much high fat food as I could. I knew this was going to be a disaster in the making. I should have listening to my instincts. Last Friday I ate the following all before 3:00PM – cereal with ¾ cup heavy whipping cream, 5 sticks of cheddar cheese, pecans, 3 large sausage patties, 3 slices of American cheese, one egg, one avocado, a root beer float with hagendaz ice cream and a 16 oz of coffee that was half coffee and half heavy whipping cream. Well as predicted I was woken up at 3:00AM Saturday morning with a severe gallbladder attack. I’ll spare you the details but it wasn’t pretty. I was able to get through it (although I had another milder one Monday night) and hopefully back to normal. The blood test came out better then in the past but they decided on lowering my dose of chemo regardless. They are worrying about liver damage. Hmmmm…I think it’s already damaged.

Brain MRI has been moved to March 3 due to the radiation oncologist being out that week (he better not be skiing!). Hair is starting to grow back in but I have several areas that are growing more slowly. I can’t wait to not have to wear a hat (more for warmth then vanity). My fan club members have overwhelmingly told me to go hatless if the mood strikes but it’s still too chilly.

I think we are all caught up and I’ll try to update you all sooner the next time.

Keep your Dancin’ boots on and you’re toes warm.

Until next time – Keep on Dancin’