Friday, August 8, 2014

It’s been a crazy and stressful couple of weeks. Brain MRI re-take showed no change. The most frustrating part is that they still aren’t sure if the growth is a tumor or scar tissue. They did see there’s a vein going through it and not sure is that what’s causing it to show up. My doc actually went across the street to another U of C hospital to consult with the top radiation neurologist and he also was unsure of what was happening. So the consensus between the two was to re-check it the end of September. My doc seemed happy with the results so I have to have trust in him.

Last week I had my CT re-take. Scan showed no change and everything was going great until the doc mentioned it was cancer. WHAT!!!! Last CT I was told that they weren’t sure what it was and could just be an infection. We went from that to cancer. AAARRR – see why I get so frustrated with communications??? Regardless, she wasn’t too concerned and thought the scan was good. Another CT scheduled for September also to make sure it stays stable.

Next was chemo and as soon as I walked into the area that I was immediately assigned a chair and nurse. Seems my message had gone a little higher and I was “fast tracked”. I think it was the shortest I was in chemo yet EXCEPT (notice there always is an except) they forgot to order the injection I get for the bone cancer and had to sit 30 minutes before it came. Oh well, they tried…

There was one funny event that happened before chemo and doc appointment. I had to go for an ECHO. As I lay on the table the tech asked me to move up a bit. As I lifted up to scoot up she reached over me and misjudged the distance between me and whatever she was reaching for and punched me right in the nose. OUCH! You should have seen her face. I looked at her and started laughing. I didn’t know what else to do. It wasn’t like she did it on purpose.

Well, until I have more to say stay happy and Keep on Dancin’!

Friday, July 11, 2014

Not a lot has happened since my last post. I had chemo this week which was a major fiasco. You would think that after 4+ years this would be somewhat routine. Due to still being on the drug trial I had to have an ECHO (heart) which was scheduled for 1:00 PM Wednesday (before chemo). I arrived at 12:45 PM only to be told that the ECHO was actually scheduled for 3:30 PM. I showed the girl the email I received from the nurse who set it up only to be told the test wasn’t even set up until that morning. REALLY??? I inquired when they closed and was told 4:30 PM and I knew there was no way with chemo at 2:30 PM I would be on time for a 3:30 PM appointment. So I canceled and went up to check in for my doc appointment at 2:00 PM. The trial chemo I am on is made in the hospitals R & D Pharmacy which is off-site so I learned the first I do is to go to the chemo area to be weighed and they could order the drug which was done at 1:15 PM. I went back to the waiting room for my doc appointment. About an hour later the nurse who set up the ECHO walked by and I alerted her to the fact that I didn’t have the ECHO because it would conflict with chemo and by the way the appointment was 3:30 PM, not 1:00 PM as she emailed me. The first words out of her mouth were “so you don’t want the ECHO”? No, I want the ECHO but there was no way I was going to be able to be there at 3:30 PM since chemo is always running late. So she told me to go to chemo and she would have the doc come see me over there. I sat for almost 1.75 hours before I was called (it was now 3:45 PM) only to be told that the chemo wasn’t ordered. OK – I weighed in at 1:15 PM and they only now found out it wasn’t ordered????? I tried to explain to the chemo nurse (male) that it was unacceptable since I did everything I should have done to get it ordered so it would be ready for my appointment. That’s when I was told that the reason it wasn’t ordered is because I gained 10 lbs since the last treatment and any change of 10% the order had to be resigned by the doctor. Anyone who knows me knows I keep records of everything regarding my health. I pulled out my phone and went to notes and read off my weight for the last 3 visits (9 weeks) which shows I actually gained 8 lbs. The nurse started rattling off how chemo dosage is calculated from your weight and proceeds to start showing me how it is calculated. I tried several time to explain to him that I know how it is calculated and know the equation. My concern was that I DID NOT GAIN 10 LBS IN 3 WEEKS!!!! Of course he was intent on showing me how smart he was by calculating the dosage that he either didn’t hear what I was saying or didn’t care. I finally told him I was very close to calling someone (and that someone would be the President of the hospital which I’ve done before on an unrelated issue with ER) and he laughs. Lesson 1 – don’t piss me off. I saw my docs nurse and asked him to go get her. I explained what was going on and the next thing I know my doctor is walking over to see me. Bottom line some one is either entering the data incorrectly in the computer or their scales are way off from each other. I personally know that I could be weighed on three different scales on the same day and have three different weights. So because of the SNAFU I was at the hospital from 12:45 PM and didn’t leave until 6:00 PM. The frustrating part of this whole debacle is that 10% is 14 lbs and if I really did gain 10 lbs. it shouldn’t have been an issue. For those who regularly read my blog might remember I had the same issue a couple months when they “thought” I lost 15 lbs in 3 weeks. World Class Hospital……hhmmmm

After that it should have been free sailing…..WRONG. If you remember from my last posting and them find suspicious areas in both the MRI and CT scans they agreed to re-do the test in 6 weeks. So as we are walking out I look at the After Treatment Summary and see that my CT Scan was schedule for September instead of the end of July. AARRR, here we go again – I need to get involved to get things rectified. Sounds simple but you just can’t call and get the appointment changes. It needs to go through the doc to the nurse to the scheduler to the department. It now has been 2 days and I still not have an answer. Want to bet that when they finally get around to making changed that July 29 will be booked for the morning appointments??? The Brain MRI was scheduled for 6 weeks BUT at 1:00 PM when I specifically requested a morning appointment 3 weeks ago so I could go to work afterward. They just cannot get it through their brain that I work full time and do not like taking off a whole day of work for a 1 hour test. Maybe I should just go on disability and then have the luxury of going for whenever they schedule me.

I know I keep harping on how you cannot depend on the doctors, nurses and staff to be in control of your treatments, etc. But if you’ve learned anything from the postings I’ve made is you have to be part of the team, know what is going on and keep records. Don’t depend on them to always know your case.

OK – I feel better venting and hope you learned to stand up for yourselves.

Puttin’ on my big kick butt boots.

Keep on Dancin’

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………