I Got Going With Life That I Forgot To Post!

My appointment with the doctor (and I use the term loosely!) was on November 16th. I originally made a chemo appointment for this day 5 weeks before going on the notion that I would be continuing with weekly chemo. Since he did not put me on the schedule for November, I did not think that I would do this chemo. When I called to clarify earlier in the day, the ladies at the office seemed surprised. Their whole attitude and comments center around the idea that I am refusing treatments. I am smarter than that! If the doc says that I need it, I get it! He is the one that said take the holidays off!

Anyway....I digress! As he was taking my weight he asked me why was I at his office today. Are you kidding me???!!! I told him that he was supposed to call Dr. Forscher or some other sarcoma specialist for advise (because he doesn't know what to do with me) and he was also supposed to look into a PET scan and see if it would be useful for a patient with desmoids. He looked right at me and said he didn't do any of those things. So basically, that appointment was a waste. I didn't learn anything new except that he thinks I look great! Super....like I care....

I expressed my disappointment with his lack of preparation and acknowledged that I feel great because they aren't pumping poison through my veins every Tuesday. I am living my life as a wife and mother and I couldn't be happier....except that he doesn't know how to treat my condition and that he doesn't ever seem to be prepared to answer my questions. It is always come back next week and we will discuss your case. I never get real answers because he doesn't know them. I am okay with this...I don't expect everyone to be an expert but then check your ego at the door and send me to someone who does know!!!! This is my life and he gets to go home and forget about it. My problem is right here in my hip pocket (literally) and won't go away!!

So what is the plan you ask??? You guessed it! Take another CT and call me in the morning...
He wants me to have another CT at the end of the year and see him a week or two after to discuss the results. The hope is that there will continue to be no change with the tumor. I asked him what then would be the plan if that is the case. Of course I already knew the answer....he doesn't know!

I plan to try to get a second opinion from an authority on the subject of sarcomas and from someone who takes my case a little more seriously. I am done! Did I mention that as I was leaving the office my "favorite" chemo nurse quit as of December? I asked if that meant my not so favorite nurse would be the one left and she said yes. Oh no! That is NOT gonna happen. I have a history with her and her lack of knowledge with IV's.

For now, I will enjoy my time off. Enjoy my kids. Enjoy the holidays. And deal with what comes next....when the time comes.

November Calendar

Since I called in sick last week and this week was to be my week off, I hadn't yet been put on the November calendar. Honestly, I wasn't quite sure after leaving the office if he wanted me on the calendar since the purpose of the 11/16 appointment was to discuss where to go from here. So I called the office.

Maria, my favorite chemo nurse called back saying the doctor said take the week off until my appointment. No chemo! I didn't argue or give them the opportunity to change their minds. Free at last! So I am off until I meet with him on the 16th to see what his collegues have to say about my course of treatment and the usefulness of a PET scan.

Calling In Sick!

After the week I had last week there was nothing that could convince me that I should go back for more torture! So I called in sick! I haven't been feeling great and I could only imagine what this round was going to be like. I used the week to catch up on sleep and family. It is amazing the difference in psyche of everyone around me when I don't have chemo.

I miss the way my life used to be...being happy, having energy and loving Tuesdays! Oh and having a clean house. I miss having a clean house!! I asked Justin (my 14 yr old) the other day if his friends know what is going on in our house. They have seen the house not so put together (not too terrible but not what I would like) and you know you always wonder what your kid's friends say about how other people live. He said he talks to his friends about me and chemo. I have to say that I am so proud of the person that he is becoming. He is loving, responsible and he COMMUNICATES! He will be quite the catch someday! Love that boy! I can't wait to be the momma he deserves to have :-)!

Off next week for my scheduled week off! I can't say just how much that puts an extra spring in my step! Scott just keeps repeating how much he loves to see me off of chemo....ditto!

Are you sitting down?!?

OK you don't really have to be sitting down for this because it is much of the same news...just a different day!

I learned that my scans are exactly the same. Go figure! So I put on the full court press to get him to give me concrete arguements for continuing with this torture. Not surprisingly, he didn't have one. See! I was right!

I did have an emotional breakdown (first time in front of him...I know you are surprised but that is a story for another time!) and I think he wasn't sure what to think of it all. I have always maintained my composure because he is the sort who doesn't want to deal with an emotional female. BUT I am one and I am DONE with chemo!

I explained to him that if he had a scientific reason for continuing, I would try. If he didn't have one I felt it was reasonable to argue that either the tumor is dead and will no longer grow or the chemo is only stopping it while I am on the drugs but it can still grow once I stop. The only logical way to assess that, in my very humble opinion, is to stop with the chemo. See where I'm going with this??? He actually agreed with me. I told him that I was willing to finish out my year (see the bargaining...smart, huh?) but that I was willing to go a few months chemo free to see what happens. Hopefully no growth but if I had some, then so be it. I was willing to take that chance. He again agreed that was reasonable.

I explained that one of my kids was throwing up (but he wasn't sick), another didn't want to go to school and another bombed a test at school (next day got 100% without ever knowing he needed to take it over) all of these events happened on a TUESDAY. Chemo day! My family has been through so much and if it isn't shrinking why for the love of Pete would we continue on with this torture! Again, I got some agreement. He said well we can't just keep giving you chemo forever. DUH! I could have told you that SIX months ago! Ugh!!!!!

So the plan...
Chemo next week (if I don't die first! I had the most violent reaction to chemo yesterday. Let's just say that there was vomit everywhere!!) and then my scheduled week off. I will then see him on 11/16 for his final answer. He said he will investigate for pros and cons and devise a plan to follow. You know how well he follows plans....NOT! With any hope I will be done with chemo for good mid-November.

He would like to do a scan once I finish to have a baseline by which to compare. We re-visited the benefits (he feels) of my having a CT as opposed to an MRI. It always goes back to, he is clausterphobic, however I am not! I continue to remind him that he can stick me in a damn tube for hours if it decreases the chance of me developing a secondary cancer due to radiation exposure. Still haven't gotten through to him on that one. We didn't ever really conclude our debate...so I can't tell you what he will end of ordering. We also talked about a PET scan.

I had plenty of fight in me and I was prepared! I caught him off guard so I guess he wasn't on his A-game.

Today is Results Day!

First I have chemo and then a jog down the hall to get the CT results. I have had no interest in going to the CT site and getting the report as I have always done. It's wierd. No desire at all for them to tell me what is going on in my own body! I suspect it will be much of the same and I really just don't want to face that I guess. I am thankful they have stopped. So that is a good thing. We'll see if the trend continues.

I will keep you posted with the results when I get them....

Back in Business

My week started off as usual...blood work on Monday, chemo Tuesday and just to add some excitement a CT on Wednesday. I don't have the results and I don't have an appointment with the doctor for another week and a half. Hmmm! I wonder if I can really wait that long. Probably not but at the moment I am doing okay.

Maria, my favorite chemo nurse said my counts were really low this week. No surprise for me...I am not a "high flyer" when it comes to white counts. I actually inquired about continuing with the neupogen last week but no one ever returned my calls. Hmm! Guess I should have pursued that a bit more aggressively. Why does it always seem that I am the only one concerned?? We continued with chemo none-the-less so I guess it didn't really matter...the low white counts. Typical for me is 2. Not great but I guess it could be worse.

So I am on for the 4 on, 1 week off. Three more to go! See this having something to look forward to will be a good thing. If my CT comes back looking "identical" to previous scans I will definitely be arguing for more time off. At this point I am willing to back off and see what these stupid things are gonna do. Too much time wasted on these things. I've got a life to live!!

I'll keep ya posted on my results. Hopefully I will just go do my own investigation and pick up my report so I don't have to wait until the 12 th. It feels like I'm getting sick so I will try to hibernate since I don't really have an immune system to speak of. I have done remarkably well for having such low white counts....if I do say so myself!

The Week Off!

After careful consideration and a long look at the calendar, we decided this week was the perfect week to take off! Yea! I will be off for Halloween (4 kids in elementary...that's lots of parties to juggle), off again for Thanksgiving and the week after Christmas. I will have treatment the week of Christmas but that just means I will have to plan and be organzied and done with shopping before my treatment. Christmas for the last 2 years have been consumed with surgery or chemo, so it's really nothing new. I will be on a break for the kid's first week of their vacation. That works for me.

I've scheduled my CT scan for Wednesday. Maybe this will be the time that I actually leave that place with a good feeling! My dr said I didn't have to drink the barium when I complained it made me really sick but when I made my appointment they said that I have to. Ugh! Once upon a time my friendly CT tech (she has been the same one to administer every CT i've had there) offered me a different cocktail for frequent flyers such as myself. She said she offers it to all of her chemo patients. So now I am a member of the special cocktail club. Who said chemo doesn't have it's perks!

My mind set right now is to get throught the CT (pray for shrinking little tumors) and more regularly eliminate the frequency of treatments. I am not sure if that is realistic but I am still feeling very done. Chemo sucks!

I'm Still Here

When I last left off we were headed to Maui. It was FANTASTIC to get away and leave doctors, needles, poison, more needles (you get the point) behind. I was able to completely forget about (well almost) chemo and desmoids. :-) It was a happy time.

We got back on Aug. 18th and went straight from the airport to the lab for blood work. I had chemo later that afternoon. Everything was okay with my counts so we were a go! This treatment would also mark the beginning of my higher dose (double that of what I was getting). I wasn't looking forward to it and with good reason. It was one of my toughest yet. I was jet lagged and sick and tired. So doing it on that day...probably not a great idea. The whole house sleep most of the day.

I have had a treatment every Tuesday since then. So if you are counting that is 5 in a row which, for me is pretty remarkable. It hasn't been without a few bumps. My white counts plummeted once again. I am on daily shots everyday that I can be to get them. It is a new regular for me. It is more of a nuisance that anything else. If only I could remember to do it! Ugh!! The germ patrol is in force over here and I am happy to report it has been business as usual.

The first few treatments were rough. I have had severe nausea and itching! I have a rash (allergic reaction?) in the general radiation area that itches like CRAZY! I am usually able to resist such reactions but I have been scratching like crazy and as a result, I have several open wounds. I know, that's bad but I have been kept awake because it itches so bad. Doctor's solution...take a benedryl...sigh! So then I become a drugged up mess. Nice, huh?

Last week I saw my doctor. I again begged him to show me the light at the end of the tunnel...is there even one there waiting for me?? The last time I asked I was so emotional and in tears telling him that I couldn't do this anymore. The price is too high for me. The nausea is horrible! I got a bit more empathy this time so he agreed to go ahead with our original plan...somewhat. He said that I could take 1 week off for every 4 weeks served...uh, I mean of treatment! So that means 4 treatments on and 1 treatment off. I even get to chose when we start. I have been studying the calendar for when the holidays will fall. That is probably what will guide me. I want to be well for the holidays.

I still feel like I am guiding my treatment when these types of things happen but I guess we have to wait and see what it will mean for me. I have been "stable" since I've started treatments, meaning all of my scans show no tumor growth. There has been no shrinkage but that might not ever happen. Stable is the next best thing for patients with desmoids. I do have limitations of movement due to the location of the tumors but I have learned to compensate for it. I don't like it but I don't really have any say in the matter! That sucks!

I will schedule my next CT scan within the next week or so and go back to see if the new higher doses have made a change in tumor size. After my last CT in July, he decided to up the doses gradually and we have been at the target dose for 5 treatments. At this point in my treatment I don't expect anything. Stable or smaller will be the best news. We pray for that!

I continue to have incredible support from many folks I just didn't know cared so much. I continue to receive meals every week from a lot of the same people (thank you guys) and many new people wanting to help. I feel very fortunate that everyone has jumped into help with meals and the kids and without all of you we truly would not be handling this as well. We hurt, we worry, we grieve, we cry but we don't give up!

Thank you all for your continued support.

Still Going

I was reminded yesterday that I hadn't posted in a while. I wasn't sure anyone was still reading :-)

Treatments have continued as planned and they were much of the same. Treatment on the 20th was slightly more eventful because I had a lot of bone pain following that dose. I am not sure if it was the increase or the Neupogen shots or just an oddity of chemo. I've had this pain before but not to this degree. I found myself reaching for pain meds because I just couldn't stand the pain. This is unsual for me so I suffered for a few days and broke down and took some tylenol. I'm not supposed to do that but I wasn't sleeping.

Treatment on the 27th was better. No bone pain and nausea subsided quicker than in previous weeks. Who knows what the differences can be attributed to...I have different experiences each week. It's frustrating! I want to be able to figure out what works and stick with it but like I said, each week is different.

Sunday night my legs started up again with the restlessness part. I get this often and it is worse at night. And then the falling started again...ugh! I fell yesterday. So I enjoyed a couple of weeks for that to go away and it looks as if it's coming back. I never went to the neurologist because the symptoms went away when I was on a break from chemo...imagine that! I know it it neuorlogically related so we will have to keep an eye on it. Which won't be difficult to do if I keep falling like I do!

Last treatment is today before jetting off to Maui!! Can't wait to leave it all behind and go on vacation with my family. It feels so good to be doing normal things....living a normal life and feeling good. It's only 8 days but I plan to live it up!

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.

Four!! Can You Believe It!!

Well the day has come (and I NEVER thought that it would!!) that I received my fourth treatment in a row.

The nausea was a bit worse than last week. I just went up to bed and prayed for the day to be over. It finally happened but it sure took a loooong time! I made it though! The week was pretty rough but I kept moving and tried to take it easy at the same time. I know it sounds crazy but if I just stay put my mind starts to play tricks on me and I really am worse off than if I try to distract myself. Does anyone understand that?!?! I'm not sure that I do either but that my friends is chemo logic!

I saw the doctor this visit. Wow! After continually reminding him what medication I am on now, we talked about my counts. White counts were 5.4, which is good...dare I say perfect! That is higher than what they usually are and in the normal range. I know, pretty remarkable, huh? The low side of normal is in the 3's and I am usually in the 2's. I don't know if I've ever been in the 5's. So we are sticking with 4 shots this week instead of the 5. He said the extra shots are not dangerous, just a waste. Considering the shots are about $1000 each...gasp! I 'd say he has a point...

I am on track for treatment #5 on the 18th. If my counts stay in "my" normal, abnormal range we will keep going on this path. The plan is to increase the methotrexate back to my original dose (the dose we initially started with before all of the liver problems).

I can honestly say....I am sick of this routine. It is going to take a lot to get me through a whole year (starting now, not when I started chemo in Dec. the year starts once I continually get treatements week after week) of this. It certainly takes a certain mindset to be able to tackle this but I have become distracted by outside forces. I know I have it in me but I am going to have to dig deep to put the blinders back on and ignore the outside negative forces and focus on the real important issue...giving my family their mother/wife back. We are imperfect soles who truly need each other...

I'll be in touch!

Three Times In a Row!

Here is the short version...

I did have my third treatment in a row, for the very first time!
My nausea was much less this time around. I don't know if that is the way things will be from now on but I welcome it if it is!
My white counts were still very high so we decreased my shots to 4 for this week. They are working too well!
I am on track for treatment #4 on Tuesday if my counts stay the same.

That's really all I've got for now....

Round 2...Here I Come!

Oddly enough, things went according to plan. What a strange occurance!

Monday was my appointment with the liver doctor. I will spare you the details of my agonizing 1 1/2 hour wait but I did see him and he had good news...imagine that! He took a look at some blood work from a few weeks back and noticed the liver counts essentially went back to normal...I pointed out that was because I was not on chemo for the 2 weeks prior. He was amused but also pointed out that that was a good sign that the liver counts were strickly a product of the chemo. DUH! I could have told you that doc! Well I suppose it's always good to err on the side of caution and rule out any of the scary stuff. All of my tests and ultrasound did just that. Woo-hoo! I then brought up my oncologists questions (1) how high could the counts go without being dangerous and causing serious permanent damage, (2) what is the "uh-oh" number that we just have to stop. He rambling off for a few minutes and then said he would call my oncologist directly and discuss my case. Phew! I've been asking those two to communicate and NOT rely on me to relay this very important information. I would somehow screw it up...I know I would.

Next up was Tuesday, my appointment with my oncologist and then my appointment with my chemo nurse. I asked my doctor if the liver doc had called and he said yes. The two had cleared up that they ARE on the same page and we will proceed ahead. I asked about when my next scan will be since we both suspect the tumors are growing based on my increasing pain. I didn't get the answer I was looking for but he did say that perhaps we should change back to my original chemo cocktail that we knew was working. It turns out that none of my liver counts changed despite the change in dose and the complete change of one of the drugs. So we will go back to the Methotrexate/Vinblastine combo and drop the Vinoralbine like a hot potato! Once we have a few treatments under our belt, we will then slowly increase back to the original doses.

Unfortunately, they didn't have the Vinblastine in the office so I offered to skip this week (aren't I just the team player :-) but sadly they declined. Treatment went ahead as scheduled with the old drug for the last time. This is the drug that makes me sick instantly. I am in a constant fight the minute I am hooked up. It's so weird! The entire rest of the day is a challenge and then I wake up the next day feeling tired but the nausea has gone away. The third day is back to the nausea! Ugh!

This time I lost the fight! I got sick on the way home in the car. Nothing is worse! I hate that feeling. I do have to admit that for a short period of time, I did feel a little bit better once I finally threw up but the feeling quickly returned and it turned into one of the worst days since starting chemo. The whole experience ought to turn me into quite a wreck come next Tuesday. Can't wait!

As for those buggers...my white counts...they were in the 30's which is terribly high and the doctor joked saying I have Leukemia. Uh-not funny doc! These oncologists sure have a strange sense of humor! We are still on 5 shots a week. They were no doubt so high because I had my last shot like 14 hours before I had my blood drawn. With 5 shots, it leaves little wiggle room since there has to be 24 hours between the last shot and chemo and 24 hours between chemo and my first shot. Count that sucker up and you have a full week! I could volunteer to get chemo every 2 weeks but they probably wouldn't ever go for that. I may just give it a try though :-)

I know I sound like a broken record but I am truly, truly strengthened and lifted by all of the support and love shown to my family. Not a day goes by without you asking me how I'm doing, how you can help or you are bringing my family the most incredibly gracious meals. With that help I can go to a baseball game, do a load of laundry and help the kids with their homework without ever having to worry about having the energy (and strong enough stomach) to prepare food for the kids to eat. Thank you just doesn't seem to be enough.

Thank you

Back on the Crazy Train!

Well we've jumped back aboard! My white counts are back in the normal column (low but remember I am not a "high flyer" to begin with) and that can only mean one thing! Torture!! So no appointment with the doctor, just the chemo. I was also wrong about my liver appointment...it is actually Monday the 26th (ooops!)

As usual I was feeling terrible on the way home. The nausea is becoming unbearable and that is with the double dose of anti-nausea meds. Begs the question....why??? So! What's a girl to do?!?!?! Thankfully Karen has changed the meals to Tuesday/Wednesday (have I mentioned that I love this wonderful lady???) so I can come home and go to bed. Honestly, Tuesdays are much of a blur. I come home and go straight to bed. I spend the rest of the day praying for Wednesday to come and the nausea storm to be over! It's a long day for everyone! The kids are getting better at it. They know on Tuesdays they are pretty much on auto pilot. Poor kiddies...not at all what I had envisioned for our lives...

I am on the regular routine of five shots of Neupogen a week to boost those darn blood cells. Only weekly blood tests will reveal if they are doing the trick. It is difficult for me to imagine that they aren't working. I've gotten pretty used to the bone pain. It sneaks up and grabs me sometimes but for the most part I hardly even notice anymore. And the shots...not such a big deal either, just a pain....an expensive pain! The lasts round of 20 was $10,000. Sheesh! We are all in the wrong business!

So the week ahead brings blood work and liver doc on Monday, chemo on Tuesday if all goes according to plans. I'll keep you posted!

No Go!...Again!!

My weekly visit was Tuesday this week. The "replacement" nurse (btw-I'm not trusting her at ALL!) calls me back and tells me to sit down (this is her routine-and I don't like it!). When I walked into the infusion room I saw my regular nurse, Maria. She looked at me and smiled. I know what this means. I said, "No?" She just smiled. I asked if my liver counts were up and she said yes but the problem is my white counts. They are in the 1's. That is not very good at all!

I did have an appointment scheduled with the doctor following my infusion, so we just went back out in the waiting room and waited and waited and waited! Someone please tell me why the office couldn't call me and tell me my counts were bad. So as it played out I went back into the waiting room and waited for an hour plus. Scott couldn't go with me so I asked my brother to take me. I know he didn't mind but when you ask someone to take a few hours out of their day you'd like it to be useful. I could have driven myself to see the doctor. I just need "taxi service" when they poison me :-)

My visit with the doctor didn't really produce much more info. I told him that I am due to see the liver specialist next week and that I had a plethera of blood tests and an abdominal ultrasound. I shared the info about the liver biopsy that the specialist mentioned and he seemed about as thrilled about the idea as I did. I took that to mean that I am right in my reservations. One interesting fact was revealed, however. I mentioned that the specialist was inquiring about past blood tests and how the liver tests looked 12 months, 6 months, 2 months....ago. So my oncologist looked over the blood test immediately prior to starting chemo and one of the liver tests came out abnormal. Interesting... This means prior to any chemo drugs being introduced to my system, my liver already was not functioning properly. Looking back upon it now, however, I realize it could be the celebration that we had the week-end before I started chemo :-)

The high end of the "normal" column was 40 and my number was 45. It isn't too elevated and obviously not cause for concern. I do recall being at a baseball tournament and being quite nervous about starting chemo and a few friends may have purchased an adult beverage for me. I am a light weight and 1 or 2 drinks may have been enough to elevate the counts. Keep in mind those numbers now are hovering around 300. So it is a drastic change. A significant concern. So I see the specialist on Thursday to see what inspiring news he can share with me...can't wait!

As for my onocologist....he instructed me to get three shots of the Neupogen this week to try and get my blood cell counts elevated. From now on my shots will be increased from three to five shots a week. Nothing like feeling like a pin cushion! Geno continues to be my nurse and my girls love being able to help. I think if I would let them, they would love to give me a shot. On occasion I self inject. It's not that big of a deal. I knew I would arrive at that mind set, it just took some time. I am there and between Geno and I, five times a week shouldn't be bad. It's just the pain from the swollen bones that is troublesome. I can't take Tylenol because of the liver counts and I can't take Advil or Motrin because of the chemo drugs. Leaves me to suffer but with all that I've been through...what's a little pain, right?

One last troubling set of surrounds....because I can't go a week without some excitement! My oncologist was looking over my chart, making his notes and looked up to ask if I was still taking my vitamin B12. Shocked by the question I answered no because he had NEVER mentioned this to me. Seems that I should have been taking this all along since the beginning. Then he wrote down the formula to pick up at Trader Joe's which includes B12, Folic Acid and B6. This formula is called Homocysteine. Once I researched this formula it says something about heart attacks and strokes if the levels are too high, especially if you suffer from high cholesterol. BINGO! I also very specifically remember him instructing me to NEVER take Folic Acid. I checked with Scott to double check my recollection and he was surprised to hear that the B12 was something I was supposed to be taking. He never heard the doctor say anything about it either and he has been at every appointment with me. So I have a call into the doctor since Wednesday to get my answer or reassurance that it's okay but as you might have guessed, he never called back! Nothing goes in my body unless I specifically get the okay and I haven't gotten that. So nothing has gone in my body! Just the poison :-)

So the week ahead should be interesting. I go for my blood draw on Monday, chemo Tuesday, liver specialist Thursday and hopefully a restful week-end. I am beyond frustrated. I realize their are no concrete answers with these types of tumors but the pain is back (which probably means they are growing again), the liver counts continually elevated are a great cause for concern and can cause permanent damage and everyone seems to be shaking up their bag of tricks and taking whatever surfaces at the top. I would like it if they weren't all standing around scratching their heads wondering what in the heck to do with me!

Counts Are Up Again

Treatment went ahead as scheduled yesterday despite my elavated liver counts. My white counts were really high because there was only one day between my last shot and my blood draw. I was also a day early to get my treatment (not a full week between treatments).

I got sick..today seems a pinch better. I think this is the pattern that I will follow with this new medication. I don't think I will be staying on this new medication (tumor pain continues to increase) but it is the first pattern that I seem to have followed. Hey! I look for normalcy where ever I can get it! :-)

I've mentioned to the chemo nurse the constant itching that I am experiencing. I have welts starting from my raditation/surgical scar area and it wraps all the way around my hip to my belly. I scratch so much that I break the skin and that is not good. The doctor gave me a steroid cream to help but it really hasn't helped much...

Spring Break for the kids is in full swing!

Happy Easter

Sorry I've been out for a week or so...what can I say? Chemo!

I had a treatment on Tuesday. It wasn't my usual Maria and the "replacement" put in the wrong IV. It all worked itself out but I could use as little excitement as possible. My platelets are low so my blood clotting factor isn't where it should be. My blood tests on Monday and IV placement on Tuesday was full of blood....I will leave it at that!

So! Treatment went okay on Tuesday. I got sick on the way home and went to bed when I got home. Wednesday I was just tired. It feels very much like you are getting over having the flu. You aren't 100% but you feel better. Do you know what I mean?? Fatigue and little energy but I was not in bed wishing I was no longer here :-)

I woke up Thursday early morning (2 am 'ish) and was completely freaked out by the overwhelming nausea. That lasted until Saturday morning. I'm not sure what happened. My hair has started falling out rapidly again. I am beginning to wonder if the "replacement" nurse gave me the full strength Methotrexate instead of the reduced dose. My blood work should be interesting....telling....

I did my blood work for the week yesterday because I have chemo tomorrow. My taxi (AKA my hubby) has work in court on Tuesday. So I get to start my week off in style! Yea me! On the up side, my liver counts did return to normal in 2 out of 3 categories from the 2 week break. That is a good sign that the elavated counts are a direct result of the chemo and not anything else. I fully expected this anyway but it's nice to see something actually play out the way I hope and expect :-)

The tumor pain is increasing and that is NOT good. I believe it is an indication that the change in meds is not good for the tumor problem. It doesn't seem to have been great for the liver problems either... I see my oncologist next week and he said we would discuss changing back to Vinblastine at that time.

We have received so many great meals and I've tried to mention them all so that you all know how much we appreciate you but I know I have fallen short. I've forgotten some and I apologize. I will stop trying :-) because I don't want to offend anyone by an inadvertant ommission. Know that we love your meals and we love you! Thank you all so very, very much!

Happy Easter!
Enjoy your families, love one another and appreciate what you have in life!

Liver Doc Today

I saw the specialist today and I can honestly say that I don't know what I got out of it. I always seem to find these fools...don't I?!!?!

I know you won't be surprised to hear that he wants to do MORE BLOOD TESTS!! At this point I have 3 different lab tests to do on Monday. He wants to check to make sure there isn't a problem with the liver that isn't related to the chemo. How he can tell this, I don't know. The tests are numerous and all mean nothing to me just reading the names of them. One that my oncologist has ordered is a Hep C test. That would be a complete shock if I had that. He says that he doubts I do but we should be thorough and check. Aw heck! It's only another needle...what's the big deal :-)

The specialist would also like to do an ultrasound. I thought my ultrasound days were over. We aren't looking at a cute little baby but a liver! How sad :-( He mentioned maybe even a liver biopsy. Uh! NO! Been there, done that with the tumors...I'll pass...thank you very much! That is not real high on my "to do" list!!

So tests, tests and more tests...and then return in four weeks. I don't know about you, but I am done with all of this non-sense! Let's get this show on the road so I can be done already!! I return for chemo on Tuesday as long as I am feeling better. I feel like I will be okay by then. There was no mention of my white counts so I assume they weren't all that exciting...which is a good thing.

Delicious meals...we have eaten very well thanks to the Herrera and Feix families. Thank you from the very bottom of our happy tummies.

Ugh! We're All Sick

I was right! I was getting sick! Hannah started off with an ear infection in each ear...followed by Cameron with an infection in each ear and Maddie with one in each ear! Not good when you are not home. Monday I had FOUR kids home sick with me...I was sick, too!

Tuesday's visit started off with the chemo nurse but I asked that I first see the doctor to make sure it was okay to have chemo while I was sick. He said no, so we cancelled treatment for this week. I asked about my liver and blood counts and they aren't great. We talked about going to see the liver specialist and he had already consulted with a specialist regarding my case. We will plan to proceed with caution but all while not really knowing what damage is being done to my liver. He ordered more blood tests...

Since I am starting to feel pain again in the tumor area, he suspects the medication change hasn't been good for progress. Depending on what the liver doc says, we may return to the original cocktail. It was at least working.

No News Is Good News...I'm Outta Here!

I did the lab work yesterday and still no news from the doc. I take that to mean I'm clear to travel with my family to Arizona for the week-end. I am feeling sick...and Hannah had an impromptu trip to urgent care..this isn't looking great.

No chemo this week because he didn't want to give me a treatment and then send me on a plane. The next appointment is scheduled for Tuesday.

Tasty and fabulous meals from the Mayse and Ruiz families this week. Thanks to you all!

Full Dose

My appointment was pushed back all the way to Friday...for various reasons. I first had an appointment with the doctor. We always start off with small talk and it lasted longer than usual so I thought I was in the clear. I finally asked...so...my numbers...am I behaving?? He opened my chart and immediately I could see all three of the liver counts were circled and in the "out of range" column. He answered...NO!

So! My liver counts are still out of control and you have to remember that the week before I only received 1/3 of the normal dose because they didn't have a full dose! The week before that they decreased the vinblastine by 50%! I am really beginning to wonder what will happen to me if I truly need high dose, intensive chemo...will I survive???

So the plan...I will see a liver specialist to weigh in on what is going on. Am I suffering long term effects on my liver? Lovely! I move full speed ahead with my chemo appointment and my standing order for the lab will be altered to keep continuous tabs on my liver and blood clotting factors...

I showed him the continuing skin problem that I am having in the tumor area. He reiterated that sometimes when tumors die off, it becomes "itchy" in that area. I said, "yea but it is spreading. I am scratching so much that I now have broken skin and infection is a worry." Remember...I'm not a high flyer in the white blood cell counts! He wrote a prescription for a cream to help. He also gave me another prescription for pain, if it rears its ugly head again, I CAN NOT take the current med's because it can harm my liver even more. The new prescription is without acetaminophen. I am under strict orders to not take anything without first checking with him. Got it!

Then we were off to see my chemo nurse. There were some chatty women (not patients) in there talking about all kinds of food...blah! I was having a very tough time this time around. It was the new delivery of my chemo drugs so it takes a lot longer and makes you gotta go ppeeeeee! I got really, really sick while I was in there. I think a lot of it had to do with the anxiety of maybe actually throwing up in there but it was bad. I am happy to report that I didn't get sick but it was the worst I have ever felt....and I was still hooked up to the IV. Scott was good about helping me find my little zone and tuning out those stupid women talking about making meatloaf! I mean sheesh! Where did they think we were, the taping of Martha Stewart Living???

I was always a little suspicious about the doc telling me to take 2 of my anti-nausea drugs with this combo. The bottle even says just to take 1 and he kept saying just take two. Hmmm! So, he was right and even with the anti-nausea, I got really sick. I came home and Scott spent the rest of the afternoon retrieving our kids scattered about Chino Hills. Thank you dear friends for taking them and giving them normal fun! It sure beats looking at your mom curled up in a ball trying to keep everything down. Friday was rough!

I woke up today feeling pretty good. It looks like it is worse of the first day but better on the second day with this new drug. Yesterday wasn't pretty but I survived and today I feel almost okay. Something to celebrate! I am, of course tired and I have that nasty taste in my mouth BUT I don't have the burnt tongue feel. Yea! So it's a trade off. This treatment also marked the first time EVER that I have received THREE treatments in a row. Yea Me! AND my white counts are FIVE! Yea Me AGAIN! I shouted to the doctor down the hall..."I ROCK!"

That was before Maria made me so sick I wanted to barf! I went back to sucking again :-)
I have my shots for today, Sunday and Monday. Nurse Geno has been the best! I don't have an appointment next week. I can't have it again until at least Wednesday and we leave for baseball on Friday to Arizona. They said take a week off and we will monitor my counts. Hopefully that doesn't mean we will watch your counts to see if you can go to Arizona. So blood work on Wednesday...maybe my blood will be green (St. Patty's Day :-)

And the Expert Says...

Scott and I went down to Cedars Sinai to visit Dr. Forscher...the sarcoma expert. He has a lot of experience with Desmoids. After driving around the enormous campus...we finally found Parking Lot 6...sheesh! It wasn't easy!!

The nurse that we first met up with made sure everyone in the sarcoma wing knew that I was a new patient. Everyone greeted me with a lovely smile and hello. It was such a refreshing change!! The next nurse that came into to take my history was soooooo, sooooo nice! She actually brought me to tears because in all the many months, doctor visits, specialists, scans, labs....I had never come across a person who just looked me in the eye and said, "I will do ANYTHING to help you"...and mean it! She went into a lot of scenarios that would make me getting chemo at Cedars possible. I don't know that these "things" are right for me personally but the idea that someone understood what it means to have a desmoid...the struggles...the fear....the pain...the unknown was such a relief for me. She was incredibly empathetic and caring. She offered to always be a phone call away and ask the doctor to actually write out the orders (specific orders) to deliver to my doctor. AND now that I have a chart, with records and a face and a memory of who I actually am....I am now considered a patient. I could call and get answers. Like I said, it was just such a different experience for me. I felt like finally I was somewhere where they understand desmoids and they actually wanted to help me. Wow!!

Dr. Forscher was equally as nice. He took a history and gave a mini lesson in desmoids. The causes...nothing concrete but genetic, hormonal or a result of trauma. Nothing new...I don't have a family history...the last Wheeler was born in 2005 and far enough away from this ordeal to be determined it's probably not hormonal and trauma. What can I say? I fell down the stairs (hardwood) within a year the beginning bump. Who knows!? The short explaination is it doesn't really matter. I have them and they aren't going away easily!

He confirmed that surgery, while for some can irradicate the beast, for others it can fuel the beast. Yup! That's me! Radiation is the same story. It made my tumors grow..not shrink! Double shucks! He did, however mention that the amount of radiation I received was a "fair" amount. He is not the first doctor to be surprised by the amount of "day glow" I received. Lucky me :-) So he feels chemo is the next likely step. As is the cocktail that I am on.

Interestingly, he mentioned that the liver counts don't excite them much because they expect it especially with the Methotrexate. So! My doc was on to something when he ignored them initially. He did say that they do pay very close attention to white counts. Mine have always been a problem. My oncologist likes to refer to me as "not a high flyer." I let him know that I will now be trying vinorelbine instead of the vinblastine. He didn't seem to disagree.

My overall impression is that we are on the right track. He said he wouldn't be doing anything else at this stage. My tumors are stable and my pain has subsided. These are all cause for celebration. He recommended scans every 3-4 months and I could return to him for his opinion or have them sent his way for review. He was also going to write a report and shoot it off to my doctor.

Overall it was a good visit. I have to admit I left feeling a bit let down. I had unreasonable expectations. I thought he was going to wave his magic wand, tell me all that was wrong and offer the big fix. He did not and he said that I should be aware if anyone claims to be able to do that. He has years and years of experience and is continually being challenged by these terrible creatures. So no magic wand, no pretty bow on my story...back to reality!

It's Official...I'm a Wimp! :-)

As the chemo nurse stuck her head out to call her next victim...uh I mean patient...she wanted it to be known that I am very sensative and I would need to first see the doctor before seeing her.

My counts were much of the same despite the 30% reduction in Methotrexate and 50% reduction in the Velban (vinblastine). Man! And there are small children who are tolerating this better than I am.

My friend Karen had done a lot of research on the many different drugs used to treat desmoids and so I asked Dr. Polonsky his opinion. Apparently, Vinorelbine is in the same family but tends to be less toxic on the liver. Before bringing this up we were going to go ahead with the decreased doses used the week before but after talking about vinorelbine, he decided we would give it a try.

Maria, the chemo nurse didn't have enough of the vinorelbine so I got what they had. It is delivered a bit differently than the vinblastine. The vinblastine was pushed through my IV but the vinorelbine is given in the IV via a drip. So now I get the first IV bag that has the sodium chloride and vinorelbine followed by a bag of sodium chloride. She explained this drug can burn the veins so it is important to let them know if I every feel any pain. It can cause some real problems.

I am always very curious so I asked her if the Methotrexate was also in the bag because she didn't "push" it through the IV. She said that I wasn't getting Methotrexate anymore. This didn't sound right to me so I kept questioning her. She asked the doctor and yes I was supposed to get that one, too. It pays to be your own advocate. If I hadn't pushed it, I never would have gotten it and who knows how long it would have taken to catch. Unfortunately, my questioning started AFTER she took the IV out. I had to get another one to deliver the Metho via a push. Who knows how it will be delivered next time. Something to look forward to....NOT!

They gave me all the warnings with this new drug. They aren't sure what it will do to my already low white counts so I need to pay particular attention to infection...fever. He also doubled the dose of my anti-nausea...that doesn't sound good...does it?! I will have to wait until next week to find out what a full dose is like....so far so good on the "left overs" :-)

Tomorrow I travel to Cedar Sinai to see the Sarcoma expert. Dr. Forscher is the doctor that I have been fighting my insurance to go see but they always say I can get the same treatment from a doctor in my network. While I don't disagree with that statement...it is the experience that I am after. Someone with experience with and knowledge of desmoids could direct treatment that I could receive in network. I will go in as a cash patient and fork over the nearly $1000 to get his expert attention. Wish me well!!

Delicious dishes this week from the Ramirez, Milton, Woo-Sam, Gibo and Hanano families!! Thank you all so very much! It is a treat, especially on the days when I have treatments. They are generally a fog and it is very helpful to be able to just go to bed and crash. You pick up the slack for me and normalcy remains for my family. Thank you...Thank you...Thank you!!

Here we go!

I saw the doctor today and well, my numbers still aren't great! White counts are low despite the Neupogen and liver counts are increased...still!

We move ahead with a plan to decrease the vinblastine by 50%. This should do the trick! I am again pose the question if this is will mess with the power of these drugs actually working. He gives me a less sure answer than last time. He says it all depends on how I choose to look at it. I change from day to day.

He also said that if my counts don't improve...i'm a big wimp! Just kidding he didn't really say that but he is worried with my counts and what to do if we don't see improvement. I feel okay. I've been better but I have certainly been worse! That's for sure!!

Fabulous meals this week (I can't say how much this helps us!!) provided by....the Lopez, Herrera, La Rue, and Mejia families. Everyday is like Christmas for the kids. I can't thank you enough :-)

Wow!

I just got off the phone with a dear, dear friend...and she mentioned she's been avoiding a call to me because she doesn't know what to say to me :( I have had my share of disappointments in the friend department since starting my journey with radiation and then chemo but I never dreamed some of it was because they didn't know what to say to me.

Let me say this to you...I am the type of person who releases emotions by talking about it. I have been this way all my life and I heal by getting it out. I realize that not everyone is like me but for me, I need this. So if you are hanging back because you don't know what to say, ask. I am not offended by the questions, it actually helps me. I have to assume some just don't care and that's all right. They aren't truly my friends...a quote I found recently states; "some are only friends in name." I've come to this sad realization recently. My point is sharing this with you is please don't hang back because you don't know what to say. I need your support right now. We, as a family are in crisis mode and struggling to deal with all that is coming our way.

My friend said she was glad she called. She was able to share her fears for me...with me. It helped her, too. She hadn't realized (in all the years she's known me) that I need that. I just wanted to put that out there. If you arent' comfortable with that approach, I get that, too. If ya don't care, I already figured that out!

Loving, delicious meals provided by (sounds like an advertisement, huh?) the Ruiz, Mayse, Feix and Meza families. You are all just too amazing! My kids are having the time of their lives. They feel the love, love the food and get a kick out of inviting you into our home :-) We love you all and thank you for standing by us and making us fat! Haha-just kidding!

I'll talk to you on Thursday once I meet with the doc...

Is this deja vu??

No chemo today. Liver stopped working again. Sheesh! What's it gonna take to get this show on the road and continue forward.

I suspected all wasn't right, I was feel crumby again. I have the next few days to get that sucker working again. Any ideas? I will go back for more blood work. I am the most frequent flyer at the lab. They are nice and take good care of my one good vein, although it has started to protest again (not healing and bleeding). What's a girl to do?!

My appointment with the doc will follow the blood tests and he will decide what on Earth to do with me. He came out into the waiting room shaking his head at me. He mentioned maybe decreasing doses again. One's got to ask though, will this still work at such drastically lower doses???

We are seriously entertaining the idea of travelling to the cancer centers (both out of state) that have experience with these pesky tumors. The problem is I need a support system while there and my kids need at least one parent. Insurance won't cover it so we are just in the thinking phase. Oh so many dilemmas! It's tough to chose which one to tackle first.

Yummy tacos tonight from Gerrie! Thank you sooooo much!!

Life Continues On...

Treatment went ahead as scheduled on Tuesday with my shots to increase blood cell production following on Wednesday, Thursday and Friday. I think I am getting to the point where I could actually do it myself. I have never been afraid of needles and the shots don't hurt. I think, at this point, I could get past the psychological hang up of giving a shot. The shots do make my bones hurt. That is a bummer! This time around it didn't start until the second day but by the third shot I had horrible pains in my thighs that lasted a good two days. I am pretty good, too with pain but the constant side effect...one after another is getting very annoying. It pretty much just sucks!

The treatment itself was uneventful. They decreased the dose of Methotrexate to 40 (Mcg??). I'm still not sure what the unit of measurement is. When I asked why the doctor said I was originally getting 30 how could the decreased dose now be 40, she said something about squared. Technical lingo that isn't meant to be understood by the pin cushion, I guess. I'm a good pin cushion...sit down and shut up! Okay :-)

Tuesday was an okay day. I was mostly just tired. Wednesday was Brendon's 11th birthday so I tried with all my might to get up and keep moving to keep his day normal and special. I don't know that I succeeded but if there is any of my kids that have empathy and compassion for what I am going through, it is Brendon. I paid for that on Thursday. I had hoped that if I kept my body in motion I could train it to work through the chemo. I will try it again this week. I was feeling sick..and tired...and that horrible taste in my mouth...ugh! That is mostly what I try not to focus on!

As with every week (we are so incredibly blessed) we enjoyed the love and meals from great friends. I have to say that my kids aren't picky but some of the meals will replace my meals as their favorites (hey! No fair). By this I mean my lasagna was the favorite my kids have ever tasted. We have it every Christmas and on very special occasions. Yolanda made some on Tuesday that Justin came home from school asking for left overs....! That's a first :-) Mickey brought over yummy enchilada casserole (that I didn't even know ever existed until chemo) and juicy barbecue burgers from Karen. How will I ever live up to all of this when life returns to normal?? You guys are incredible! More than the meals, I value your friendship.

Thank you for checking in on us. We hit a rough patch every week and I am not going to lie. It is a struggle to keep physical and emotional health in check. Many of you know I am a cry er...and it operates as a release for me. Let me put it simply...there has been a lot of releasing!! You have touch the very core of my soul with your friendship and I only pray that I can be half the kind of friend in your time of need. You amaze and inspire me to keep moving...and I shall.

My next fight is tomorrow morning. God willing I will get past more than two treatments. I had a slight fever yesterday and I am feel sort of crummy, so I some what doubt the decrease will have an effect on my "freaked out" body. Only time and poison (haven't lost my sense of humor) will tell!!

Have a great day! I'll check in soon...

Back on the Saddle!

Good news first! My liver appears to be fine...gallbladder fine...white blood counts fine (:-)..
My spleen is enlarged but I only know that from looking at the report. The doctor didn't seem bothered enough to mention it to me. Some of my blood work is still not in the normal range but I don't know what those values mean. Again, the doctor didn't explain them to me so either he isn't bothered by them or surprised. The biggest surprise of the day was the white blood cell count. I have not been doing the shots (per the doctor) and my counts doubled in a week. It's gotta be a mistake but I am living in the moment that something miraculous like that happened! Yeah!

I know you say those kind of mistakes don't happen but believe me...it can happen. Look at my CT reports and you wouldn't believe the mistake they made. It's somewhat comical the errors that can happen in my case... The doctor writing the CT report compared my most recent study with that of previous studies. The problem is he compared the March 2008 study to the one I had last week. That study was from tumor #1 (surgery April 2008 removed the whole thing with clear margins). We are on tumor #3! Not surprisingly, the reports states the tumors appear differently than in March 2008. I hope so! They aren't the same thing!! One would think the doctor who has written every report, for every study I have EVER had regarding these pesky little tumors would be aware of the history, especially since he had my intake form in his hot little hands!! Hey, I am special....special things happen to me.

The good news is I don't think it had an impact on the information that was obtained by the current CT and he compared it also to the November 2009 study which perfectly pictured my pesky little tumors (#3). The CT last week gave a glimmer of hope. My tumors are "stable". In my fantasyland, I was hoping for shrinkage but that probably isn't realistic. Stable is the next best thing. I confirmed with the doc before I got excited. Stable refers to NO CHANGE. They didn't shrink but they didn't grow. When I asked if he expected to see shrinkage at this early stage in treatment, he said no. So one could conclude that perhaps this treatment is working??? I hope so. It has been difficult and there is a long road ahead!

Up next...I start back on chemo next Tuesday. He has concluded that I am not tolerating this dosage very well. We won't get past two treatments if I stay at the current dosage. He thinks we should decrease the dosage of Methotrexate by 30%. The vinblastine will remain the same. I then posed him the question, "can we then expect this lessor dosage to be less effective?" Remember, we are already (before the decrease) operating at about a 40% chance of it actually working. He offered that one could effectively argue that my body is more sensitive to the medication, metabolizes it slower and therefore can be just as effective because it hangs around longer in my body and it is sensitive to it's effects. Yeah! I love it!

What I don't love is that starting Tuesday I go down my path again. It's a lonely road. It really, really sucks! I pray that I tolerate it better and my body does with it what it is supposed to do!

Loving meals this time around have kindly been provided by the Naranjo, Hererra, Van de Brooke, Santiago, Woo-Sam, Milton and Mendez families. It is from your friendship that we draw the strength to get through this with the least amount of harm. The kids look forward to seeing your families and are learning such a valuable lesson about love from you all. Thank you for wonderfully modeling acts of kindness that most are only able to talk about. My family gets to experience it! Thank you from the bottom of our very grateful hearts!!

Isn't It Obvious??

Well, I'm going to go out on a limb here and make a very obvious statement: I am not tolerating chemo very well!! Duh!

My visit with the doctor brought more fears and questions and a lot less answers than I had hoped for. Nothing surprises me much anymore, so it is all just par for my course...I guess!

First, my counts last week apparently were only 2.1 and NOT 2.9. Hmmm! The ears are a magical piece of equipment, aren't they? I am up a whole .3 for a whopping 2.4! He has confirmed this is not a good count and he had expected to see me back in normal counts with the neupogen and a week off of chemo. Honestly, I am not at all sure what to make of it other than I need to continue to be very careful. Germ free!

That brings me to my second point, my urine culture results. The doc says I DO have a urinary tract infection. He read to me all of the "junk" wrong with it but it means nothing to me. It sure was a long list. Interestingly, the culture did not "grow" but the doc says sometimes things go wrong with the culture. He says it's a urinary tract infection. He changed my antibiotics because I should have responded better than I have on the Cipro. I am guessing they want to get control of the source of the infection before it becomes a real problem, especially with low white blood cell counts. We don't need anymore problems, do we??

Next up for me, a CT of the pelvis, abdomen and chest. It isn't emergent but he wants it done ASAP. So, we will work on getting that scheduled. No chemo this week. My next appointment is scheduled for Thursday of next week to give time for the CT scan and reports to follow. He expressed the need for a "Plan B". I am sure he will have that figured out once Thursday rolls around.

More Complications

This week has not been a good one! I never really bounced back from my treatment last week. I have been very tired and just had a general but overwhelming feeling...of feeling like crap. I can't really put specifics to truly describe what is wrong. I just knew someting wasn't quite right.

My visit this week wasn't until Thursday because of scheduling conflicts with the chemo nurse. I first had my appointment with the doctor. One look at me and it was evident that I wasn't feeling well. We talked a lot and watched him stare at his computer...a lot!

My blood counts came up a bit more...good news. I am still not in the normal range but he said "you will never be normal!" His attempt at humor. They have low expectations for me, I guess. But my numbers improved and I still haven't gotten sick from having few white blood cells. That is one for the very lonely "positive" column. I still need to be extremely careful.

My liver...what do I say about this?!?!? It seems that my liver isn't cooperating either. My weekly blood tests reveal that something isn't quite right with my liver. This could be the reason I feel so badly. I am having pain on my right side, just below the ribs. Hmmm! Chemo nurse said I should have mentioned this to the doc. I can't keep all of my ailments straight. There are so many and I try really, really hard not to be that patient who complains about EVERYTHING. Apparently, this could have been useful info.

The plan...I had to go back to the lab for a urine culture, to rule out a urinary tract infection. I know I don't have one. I don't have any of the symptoms. I have never had one but I understand the symptoms...and I don't have them! But I did what he asked and went to the lab. I am on antibiotics in case there is an infection because Idont' have the immune system to fight it.

If I don't improve and depending on more blood tests on Monday, I may have another scan or ultrasound to check for stones (gallstones?). I am now piecing all of the clues together (Karen, I do have pain in the back where you described! It's just not constant and I forgot about it until it starting hurting again!!!) and this could possibly be gall stones! Good heaven's...really!!! What on EARTH is going on with me!!!

So, no chemo, more tests, back on Tuesday. This is the plan for now other than just resting which is all I have the energy to do. My hubby and kiddies are hanging on as best they can. It kills me that my kids have to see me in bed, looking awful and I can't get up to do anything. This isn't their mother...they aren't used to seeing this, no one should. I would almost have been better for me to do high dose in the hospital because they wouldn't have had to witness all of this scary stuff. And my hubby..he IS a good man! He has picked up all the slack. I feel so guilty. He has been there to pick up where I left off. Even with all the crap from outside sources, he is being tugged in every direction, he comes home and takes care of his family. Not every man is up for that task! He leaves it at the door and comes home to his family that isn't quite right, right now. It is times like this that you see what people are really made of...my husband is a good man :-) Told you it was a bad week! It has been full of struggles...

Oh and those dreaded mouth sores I have been so desperately trying to avoid...got one! I didn't call the doctor because I have been expecting them to rear their ugly heads. Doc wasn't too pleased that I didn't call him. Seems it could turn in to a life threatening infection....especially since I don't have much of an immune system. Hmm, lesson learned! So much to learn when they are pumping poison through your veins!!

Amazing, amazing folks have pulled together some great meals this week! Thank you to the Milton's, Simmons, Bartholomew's, Loya's, Carew's and Rogers! No amount of words can ever express to you our gratitude not ony for your meals but your amazing friendship. You have all picked up the phone and checked in on us. You constantly remind us of just how much you care about our family. Thank you!

More of the Same

It is getting really old to post the same ole garbage! I know you want updates so here is the update for this week.



Good new first! I have fulfilled the maximum co-pay for "self injectibles" which accounts for the high co-pay last week. My doctor re-submitted my prescription for 12 shots a month and the co-pay was only $100 for the month. Still seems high, I know but last week I was given the impression my co-pay would be $300 for the week! That would be close to $16,000 for the year. My head was definitely spinning last week and stopped it's rotation yesterday :-)



Not so great news...my counts improved with the shots but only slightly. They went from 1.6 (and that was after a 2 week break and the shots) to 2.2. Normal levels are more than twice that and that is for the very low, within normal. I got chemo anyway...we will have to wait and see what happens next week.



My one vein that was my old faithful and protested and I worry that I won't be able to do IV's for the whole year. I am a bit bruised and have track marks now :( sad! I immediately got sick this time around. I am not feeling great but trying to work through it. The good news is that nothing is a surprise and while I feel miserable it is somehow a little easier knowing that it has been "more of the same." The goal for the week is to regain my energy, stay healthy and produce those darn blood cells! Grow BABY Grow!



Incredible meals for the week have come from the loving hearts of the Van de Brooke, Rogers, and Kirby families. Thank you all so very much!

Back on the Saddle

My counts all improved, thanks to the Neupogen. That is the good news! The bad news is that I have added more things to my "normal!" And this medication is expensive! My co-payment for my 3 shots this week was $300 but the pharmacy cost was $2000! I'll give you a moment to do the math! At this point what am I going to say, no thanks?!?!? I kind of need this medication, ya know?! AMAZING! I will highly encourage each of the kids to go into pharmaceuticals!

So far I am feeling okay. I am taking the Zofran for nausea. My tongue is fried but that always happens before I even get home! I am tired and feel like I have the flu. I don't feel great but I have felt much worse in the past!

I get a kick out of some of the other patients and sadly, I am a member of their club. Neat folks, crappy situation but we have each other to bounce our experiences and troubles off of. I never thought I would need that but truthfully, few folks understand what it's like to be a chemo patient. Many try but you can't truly understand all of the nuances unless you live them.

The Milton's, Herrera's and LaRue's have been our meals on wheels to get us through this round. Love you guys! You have made this horrible ordeal a bit easier...