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!!