He Expected to See Shrinkage!! Darn!

I saw the doctor on Thursday and we watched him rub his head and wince a lot! Scott said, "Stace, he doesn't know what to do with this!" I gathered that 7 1/2 months ago! So he told me everything I already knew. The tumors are "virtually identical" from the January 28th scan. Nothing has changed.

Scott asked his thoughts and he said he was hoping to see shrinkage. Since we don't have that we are cranking up the meds. That, along with re-confirming that we are a long way off from being done is heartbreaking news.

Tuesday I begin again. I will have treatments for the next 3 weeks and then we set off to Maui for 8 days. I hadn't anticipated the 2 week break while we waiting for the CT results so that break isn't really a great idea. He said to go on vacation and enjoy myself. HUH! Easy for him to say!!

I am truly defeated. I, albeit unrealistically, hoped for complete obliteration and the end of chemo. He laughed and told me that even if they had disappeared we would be far from done. I repeated that I realize that was unrealistic but we all need to have something to look forward to....that was mine.

On the bright side my liver counts are...wait for it....all in the normal range. Chemo hasn't killed my liver after all!! Yea!! They will rise dramatically once I start again but it is a great sign that they return to normal when we stop the treatments. My white counts are a different story. He couldn't give a medical reason but to say that it is me and we can never really fully understand why I react the way I do. My counts should be healthy and in the range of normal but they arent' so I need to continue to be careful. I always am. It has become a way of life for our family.

My doctor did mention for the first time getting a PET scan. I will push it because it could give us a better understanding of the tumors activities. He said you never know because...it is me :-( Sadly we wasn't being a wiseguy! He is very serious because things just don't go according to plan with me.

So blood on Monday...chemo Tuesday...shots Wednesday, Thursday, Friday and Saturday.
It's official. I am a human pin cushion once again and I can honestly say that I didn't miss it for a single second!

CT Results Are In!

I picked up a copy of my CT results today and the verdict is mixed. The scans show that my tumors are exactly the same as they were on the January 28th, 2010 scan. So this means that the chemo has worked in regards to stopping it's growth. They were aggressive and now...not so much.

I am a bit disappointed (actually a lot) because of course, the hope is that those suckers would have been obliterated!! But they are not and so my life on chemo continues. Even if they were gone it would not have been over but the high would have certainly carried me through to the end of my treatment protocol. Now, I live with the fact that they are living inside of me happy to be there but not growing. See, I told you it was mixed news!

There are a lot of other things written in my report that I have never really understood. For example, my enlarged spleen (still there...and enlarged) and the lymph nodes along the retroperitonium (which should be not seen but are)...what all this means, I really don't know. Sure I've asked before but I've never been given a real good answer. Not one that I understand anyway!

My appointment is next with my oncologist on Thursday to officially be given the news (like I said, I picked up a copy of my report...I am a pro at this stuff now so I don't need to wait over a week to be given news...maybe not a great idea but hey! do you blame me??) and probably get some chemo in my veins...ugh!

That's all for now....

Getting Tougher

I had another round this week. Nothing significant to report. Still no word on the neurologist.. I have to keep on them to get it done, hopefully by the end of the week.

CT scan is scheduled for Wednesday and next weeks treatment is potentially on hold until after I have my scan and have been delivered the results. It just doesn't make any sense! I have been falling, having chest pains and the latest is getting dizzy and all that hasn't stopped them from continuing with treatments. But suddenly the results of the tumor growth is a valid reason for putting the breaks on for a week, maybe two. I just don't get it, I don't!

Every week is different but the one thing that doesn't change is that it gets tougher with each week. It just keeps getting more and more difficult.

Up and running...again! Ugh!

First I had chemo. Maria asked if I had taken my anti-nausea and I decided to confess that I have not been taking them for weeks because it makes me sick. I've told her this before but she had an answer for everything...I didn't take it at the right time or with the right foods or I was not eating well enough. Believe me when I tell you that the nausea is the worst feeling ever and I would try anything to make it work! So the notion that I wasn't trying everything she had suggested is ridiculous! After hearing that I've been doing chemo without it, she decided to give me something else...FINALLY!

So we tried a different anti-nausea drug and she gave me a much bigger bag to "flush" my IV with after she "pushed" my chemo drugs. Consequently, it took a lot longer to get the heck outta there and I had to go peeeee! LOL!!

Next stop was a visit with the doctor. I asked about the MRI results he muttered a bunch of stuff and I caught a smidgen of bulged disc in the t-spine (great!), depleated bone marrow (wonderful!), muscle deterioration (fabulous!)..."but nothing significant!" I quoted that just so you understand how the visit went. For a 39 year old woman who can't put on her left shoe....I disagree! It showed plenty significant problems. But those won't kill you so they don't matter...I guess!!

Scott asked if the MRI showed the tumors. He said no just the bulge in the disc. Not at all why Scott was asking but I tried to re-phrase the question. I said we were asking to see if the chemo is working. He asked when my last scan was. Are you feeling my frustration?!?!?! I think when I come in he checks his brain out and doesn't remember anything. I 've been asking him....begging him for another scan for 3 months! I finally just looked at him and said...listen the last (only) scan was Jan. 28th. It has been 7 months of chemo. I want to know if this is working. My feet are numb and tingling. I have chest pains. My liver is not working properly. My white counts are all over the place. I am sick on a weekly basis. My legs are giving out for no reason at all. All this to shrink the blasted tumors. If it isn't working...I want to know! I need to know!! If it is working great...let's go! If it's not working we may want to re-think our approach. It seems like there are so many other drugs out there being used successfully, why waste a year if this isn't working! I told him if it isn't working at all, I'm done!

So he ordered a CT scan. I then asked about the radiation that is given with each CT that I've ever had coupled with actual radiation. You want to know what he said...."it's not my body". I came back with "well it is my body and THAT is why I'm asking". He said you have had a lot of radiation.....then he ordered a CT scan. When I further questioned him he countered with an offer to not scan for a few more months if I want to wait. Am I not clear or is he an idiot!?!?! Nevermind, I know the answer to that question :-)

So I wait for the CT to be approved and then I go drink that nasty stuff and get more radiation. At this point it will take longer to fight the MRI/CT debate or move to another doctor that we have decided to do a CT this time....just to get a peek inside! Chemo is scheduled for next Tuesday. Oh joy!

As for how the new anti-nausea worked, I can't really say. It seemed to hold it off for a bit longer. I was able to get home and in bed before the bad stuff started. Usually I get home and go to sleep and by dinner time I am hungry and eating makes me feel better. This time the smell make me so very sick! So I didn't eat dinner...I just rolled over and went back to sleep. Today, the day after I do feel better. Just taking it slow and drinking tons to flush out the chemo.

Tomorrow's another day :-)

Moving Forward...

I had my MRI Tuesday. Monday was the first go at it but as I sat in the waiting room they called me back and told me the machine broke down. So I went back Tuesday morning. The tech said it wouldn't take but 40 minutes and I would be done. Once she got to my t-spine she paused for what seemed like forever. When she pulled me out to start the IV (1st part was without contrast the 2nd part was with contrast) she said she was doing some extras on me for good measure. I've had enough of these to know that they don't just do that unless they see something. So that told me it wasn't just a routine scan...bummer!

I left the radiology department and headed for my oncologists office to see if I would go ahead with my chemo. They called me back and took my vitals. Chemo was a go! I protested because they didn't KNOW what was wrong with me but they were going ahead anyway...until the doctor came out saying he was having second thoughts! Thank YOU! I was not the only one. It turns out my white count dipped again and we needed to get them back up before continuing. Another week off! Yeah!

I went home and did shots for the next four days; returned for blood tests on Monday and started the whole why are we doing this even though we don't know what is wrong with me routine! Yes, we are. I wanted to see the doctor and find out exactly what the MRI showed before my chemo.

My nurse had told me (last week) the MRI showed nothing significant in terms of blood clots but did show "massive muscle atrophy", probably because of radiation. When asked if I would be able to recover from that, she said she didn't know. Her advise...exercise more. Having 5 kids she says isn't exercise. Obviously she doesn't have FIVE kids!! LOL


Up next is chemo and MRI results...tomorrow

Still Going!

I guess it's been a while...week 6 came and went. I had my treatment and it's getting more and more difficult. I am assuming it has a cumulative effect. I saw that doctor before treatment #7 and expressed my concern for my sudden falling. I have fallen several times when my legs have just completely given out on me. I am also having difficulty with activity. I get winded and exhausted quickly. This isn't me so I know something should be looked into.

That same day I had treatment #7. Maria, my favorite nurse was on vacation the following week so I asked for a break. I really need one and it's going to be a really busy week with 8th grade and pre-k graduations to attend. Not to mention my not so favorite nurse would be there to drain me of all my blood!

I was granted a repreive and it couldn't have come at a better time!! I have not been this sick in a long time. Treatment 7 kicked my tail!! I have been falling, having chest pains and suddenly on Tuesday I began to have some swelling in my legs. Tuesday was bad and Wednesday was worse. I called the doc and exlained the symptoms. He wanted to see me so I went on Thursday. He said we needed to rule out a pulmonary embolus. So today I had a venous doppler (leg ultrasound) to see if there are clots in my legs...the reason for the continued swelling. Good news! The tech told me right then and there that there were no clots! Doesn't mean they aren't in my lungs but good possiblity that they aren't. Next step is an MRI.

I have to say with all of my complaints of this office they have really stepped it up on this scare. They all have just jumped into crisis mode and are getting things done! I wish I could have enjoyed my week break but it was nice not to have amidst all the appointments. I am secretly hoping they give me another week off to figure all of this out.

I fell again yesterday on the way out the door. It's so embarassing and frightening. I told the doctor that something is wrong with my legs. The muscles in my legs feel shakey and give out at random times. This is not normal and I want to get to the bottom of it. My feet are also numb and tingling but I assume that is from the swelling.

Waiting to hear on the MRI appointment....the first available is not until Tuesday the 22nd and if we are still rulling out a PE then it might be too late! So they are working on getting me an appoinment somewhere else...sooner.

I'll keep you posted!

Wow!

Five in a row! We went ahead with our plan and had treatment #5. I can't say how my numbers were except to say that my white counts were 6, which is GREAT! Unheard of, in fact!

I got my not so favorite nurse...and it was a bad experience. She started right away which means she didn't take my vitals. She just went for the vein...little vampire! I don't know if they are really supposed to take my temperature and blood pressure before starting chemo but Maria (my regular nurse) always does and it just makes good sense, doesn't it??

The IV experience was exciting (I say that tongue and cheek)! She started with the catheter and pulled out the non-flexible component but the flexible component kept going in and out because she wasn't really holding it steady and she wasn't really paying attention. She is somewhat rough with her movements. When an IV is being put in I would expect soft, gentle movements, no???? So she continues to hook up the tubing to the catheter but she is jabbing it into my vein to keep it from coming out...she looks down to get the tape....and Geno alerts her to the blood gushing out of my arm. There was blood all over the place! The pillow! The mat! My arm!! I have had a lot of IV's in the past few years and I can say she is the only one that can do that. Everytime she does my IV, I have this happen. This was the worst yet, though.

Needless to say, I will be requesting Maria from here on out. Maybe I'm special and I am the only one this happens to but ya know, I am TIRED of being SPECIAL!! Plain Jane Boring Stacey, as my mom used to call me always worked for me in the past!!

I have also come to the conclusion that chemo has a cummulative effect. Number 5 is not pleasant. I feel horrible...still and this is the 4th day since my treatment. I have terrible stomach pains and a slight fever. So far, it has just really sidelined me and gotten my attention. Probably all normal but it sucks! I will be keeping a good eye on it.

Scott wants me to take a break next week. We will see how I improve from now to Tuesday. There has been no mention of my liver counts. Not so favorite nurse doesn't like to tell me things without asking so I already used up my questions inquiring about the white counts ( I need that info for my shots). Let's face it! It didn't really matter what my liver counts were...they already gave me the treatment.