Enjoying food again! Anxiously awaiting next scans.

Well, I made it through another cancer-induced PIT!  I feel somewhat silly for the extreme feelings of doom-and-gloom I get when I experience a traumatic event involving effects of the cancer or side effects of its treatment.  It's easy to say that now that all of my mouth sores have healed (actually I still have one lingering sore on my tongue) and I am able to eat real food.  But when I'm IN the moment, it's bad.  It was a very trying time, for me and my whole family.

I wasn't able to eat, even soft foods, so my diet consisted of a liquid diet that included Boost and Boost (original and high-protein.)  I had to medicate myself before I could even drink.  I lost nearly 15 pounds, and let me tell you, I do NOT recommend this cancer diet.  Most women I know would say that they'd like to lose a few pounds, myself included, but this has surely been the most unhealthy weight loss I've ever had.  In what seems like a very short time, I've lost a large amount of muscle and fatty tissue, which has completely changed my figure.  I have no butt!  It's totally flat and I can't keep my pants from falling off, even the smaller-sized pants that I had to dig out of the shadows of my closet, because there is nothing to help hold them up.  I've never been really big in that area, but have always had at least a little shape.  No longer.

I'm concerned that I have cachexia, a wasting type of syndrome commonly seen in cancer patients.  We've all seen someone with this.  Their pants just droop off their butts, they are very thin and have little or no muscle mass.  The body gets in the mode of breaking down tissue as opposed to building up and rebuilding.  One of the bad things about this is that it can, once it gets set in motion, actually continue to occur, despite a return to adequate caloric and nutritional intake.  This can eventually, directly or indirectly, lead to death.  In my case I can see how it would  it would hinder my body's ability to successfully deal with toxins (such as chemotherapy) and fight/heal side effects (such as mouth sores.)  Scary!!!

I, however, am doing my part by eating ... a lot!  Well as much as I am able -- I physically cannot eat as much at a time as I used to.  Two plus weeks of little or no real food, then a diet limited to soft bland foods and lemon-less iced tea has driven this spicy-&-flavorful-food-loving Louisiana girl to her sad, sad breaking point!  I'm thoroughly enjoy eating and have even gained a couple of pounds.  In light of the past few weeks, this is a good thing.  I don't believe I have ever in my life been happy about gaining a couple of pounds!

Soooo .... the plan, while I was deep in the throes of severe mucositis, was that I would stop Afinitor (the culprit!  grrr!) for 2 weeks while the sores healed.  Two weeks fell on a Saturday, and I had a follow-up appointment with Dr. C on the following Thursday.  I took it upon myself to wait to restart until I discussed the options with Dr. C.  It's been 3 months since my last scans, and in Dr. Kim's opinion, the scans needed to be looked at before I got back on Afinitor for a week or two after only being on it for a week in the first place.  This was presented as an option by Dr. C, and I agreed.  I'm scheduled for a CT of the chest, abdomen and pelvis, and a bone scan 4 days from today.  Results will determine where we go from here, treatment-wise.  Praying for tumor and pleural effusion shrinkage ... or at least stability!  This would indicate that the 2 drugs (of the 3 prescribed at time of last treatment change) that I have remained on may be working even without the Afinitor.  This would be great news for me!  BUT, I am willing to give Afinitor another shot, despite the mouth sores.  It would be at a reduced dose, so that may help.  A lot to think about!  A lot to worry and stress about!  Trying to leave it all in God's hands ... I know he's got me, but this is not easy.

Quality of Life Issues

Despite using the baking soda mouthwash and "magic" mouthwash recommended by Dr. Coscio, the mouth sores continued to worsen and multiply.  My weight has steadily decreased because I am unable to eat -- even drinking water is painful.  I'm unable to talk due to the pain.  I am using the "magic" mouthwash (a combination of Maalox, Benadryl and viscous xylocaine) before my "meals" which consist of Boost meal replacement drinks and the occasional vanilla yogurt cup.  I was seen by Alicia, Dr. Coscio's APN, who advised me to discontinue the Afinitor for one week.  According to my research, stomatitis (mouth sores) is Afinitor's most common side effect.  She also prescribed Valtrex, an antiviral drug, because after examining my mouth she thought it looked more like a viral infection instead of stomatitis.  Interesting.

Today is Day 5 on Valtrex.  Thankfully I haven't seen any MORE sores (last count was 8,) but the existing ones don't seem to be going away.  I'm in so much pain!  And not just when I eat or drink or talk.  So in addition to rinsing with magic mouthwash before meals and at bedtime, and the baking soda mouthwash in between, I am also taking a pain med.  I try to limit this to twice a day because it makes me a little sleepy.  It does help to take the edge off the pain. 

Honestly, it's been really hard to keep my spirits up this week.  I had to miss the girls' first football game (they're both in marching band,) and I didn't go to church either (where Bethany was playing drums.)  I cancelled my parents' Labor Day weekend visit here because I'm in no shape or mood to have company in the house.  Danny is doing everything around the house (thankfully!) because I feel like you-know-what.  My days revolve around my mouthcare regimen and managing the pain.  I'm feeling so discouraged that the sores aren't going away.  The thought of starting back on Afinitor in 2 days makes my stomach turn.  I don't want to live like this.  In pain and unable to eat is not living.  It's actually a pretty miserable existence.  I don't want to be the mom who sits miserably on the sofa all day.  I do still try to converse with the kids about their day, etc., but I sense that they're uncomfortable with me being so uncomfortable.  And my sweet little David ... he asks me every day "Are you feeling better, Mom?"  "Is the medicine helping, Mom?"  He just wants to hear me say that I'm all better.  It's heartbreaking.

Let's say the sores eventually do go away.  I don't think I want to go back on Afinitor.  The literature says that 67% of patients on it get mouth sores.  Mine are so severe -- large and painful -- how can I possibly go back on the drug that most likely caused this very painful side effect?  Similar to the neuropathy caused by Eribulin, it's a quality of life issue.  However, with Eribulin, the decision to discontinue it was made easier by the fact that it wasn't really working on the cancer anyway.  Afinitor hasn't even been given a chance to work.  I am scheduled to be re-scanned in October.  I was only on it for about a week before the mouth sores began.  Deal with the mouth sores until then ... no way!  And then if the scans are good ... live with mouth sores and inability to eat and talk, what, indefinitely?  I should be hoping for good scan results, but not dreading living like this.  I suppose it's a predicament only a fellow cancer patient can fully appreciate.  To the healthy outsider, it is easy to think that I should just suck it up and tolerate the discomfort if the drug that's causing it affords me a longer life.  But again I say, this is no way to live.

I am praying a lot, and I have lots of family and friends praying for me.  Right now I'm being very specific by asking God to take these mouth sores away.  I ask that you pray for the same!