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.