Anita Roberts

This chemo is one big rollicoaster. Just as you think that you are going to have clear sailing because you survived the first onslaught from the infusions of epirubicin and oxaliplatin and just as you are feeling really optimistic about the next two weeks, then bang, the Xeloda (which I take twice daily for 2 weeks) gives you a kick in the pants. Further the maximum Xeloda toxicity seems to hit me at the time of maximum bone marrow suppressive effects (2 weeks post chemo) so it is even more of a downer. Because of all this, this weekend has been something of a low point, but still has had a lot of highpoints. This afternoon we’re going to Dorrie and Jeff’s to celebrate Memorial Day and to decide on attire for Kathy’s wedding July 3. We are all so excited about the wedding, of course, but also the great family reunion that will occur including some very special friends from Germany. This has been my short-term goal and it’s getting tantalizingly close!
Tomorrow is the CAT scan – then I will have to hold my breath for the results.

OK! Tonight is time for catharsis – why I hate Xeloda! Xeloda is the 5-fluoro-uracil prodrug which I take twice a day - 3x 500 mg pink tablets each time for a total of 3g/day. This drug is metabolized by the liver and then the tumor to produce the active DNA synthesis inhibitor 5-fluoro-uracil. Because of the presumed enhanced metabolism by tumor cells it is considerably less toxic that the parent compound. So why do I hate it? To me it is the cause of discomfort in my gut, blisters on my feet, extreme sensitivity in my hands and also my mouth/ gums, such that my taste is changed and I can’t even enjoy my passion for dark chocolate! Of course, any of these effects could also result from the other wonderful poisons that are administered to me. Still to me, there is a particular reticence to my having to take these g.d. pink pills (I don’t like pink either) willfully, twice a day, which, for the right or wrong reasons, I feel bring me multiple discomforts. So after each breakfast and dinner, I sit and stare angrily at these three pills and wish that they would get lost before I have to swallow them. Sometimes it takes me 10 or 15 minutes to swallow them, one at a time. So now I have named them – one is for Bob, one for Greg and one for Karl, with the hope that they do more harm to the tumor cells they are supposed to target. I have only 27 more Xeloda to take for this cycle and I am already counting down to my reprieve for a week before it all starts again with the next cycle. Amen!

I am feeling so good one week into chemo 3 that I think that this has all been a mistake! A weekend at the beach has restored both my body and soul! I am always calmed and awed by listening to and watching the ocean waves – sometimes peaceful, sometimes angry and destructive, but with a memory of times long before us and a future long after us. We had a fabulous weekend with Bob’s Mom and my sister Dorrie and her husband Jeff, our dearest friends for life. As always, we planted and weeded, which I am beginning to think are equally therapeutic – the former clearly showing a hope for the future and the latter a model for getting rid of the “disease” to allow the rest to flourish. Even Bob got into the weeding – first time in 40 years! I have never previously known him to even recognize a weed, let alone want to do something about it! Of course, there were also restorative walks along the ocean – just wearing a bathing suit gave me a boost – and the wonderful feeling of scrunching down in the sand – sans towel – to experience a primitive oneness with the sand and salt. We also had delightlful meals on the deck watching the reflections in the canal and boat rides in the bay with the dogs to share their great joy in retrieving. Overall, it was a celebration of life.

Happiness is having dirt under your fingernails! The goal this weekend was to recover – both mentally and physically. So I took the advice of a dear friend – a young man who has recently overcome Hodgkins disease – and did things that bring me pleasure. Since the weather was truly gorgeous, that meant walks with Bob and planting more flowers. Finally today (Sunday) after 12 hrs (no joke) of good sleep on Saturday night I feel that I am back on my game and ready for the next chemo on Tuesday. Both Bob and I are learning that some effects that we had attributed to a decline of my health are, in fact, side effects of the chemo and therefore ultimately reversible. Live and learn but LIVE!

The journey continues to have its bumps, but I tend to remember only the smooth sailing. The C. difficile episode really knocked me out, but a lab picnic on Thursday brought out the adrenalin. We had over 60 lab members plus children and enough food for 100 - the usual situation for LCRC. The weather was perfect and the event was highlighted by a special presentation by Sushil Rane of a brass plaque of the “TGF-beta logo” which he had made in India. It was a really memorable day.

Friday morning was supposed to have been my third round of chemo at Georgetown, but it was decided that I was too weakened by the C. difficile bout to go ahead. So now it has been rescheduled for Tuesday. In fact the postponement was a real blessing to both Bob and me and gave me some much needed breathing room. I began to feel stabilized only this afternoon (Saturday) and celebrated by planting even more flowers. It was a perfect sunny day and was highlighted by the buzzing of our strange red-eyed critters – the 17 yr cicadas. They are everywhere. My neighbor told me that he heard that each lot will hatch about 40 lbs of cicadas – that’s a lot of insect flesh! But they are totally harmless and have but one purpose of mating and beginning another 17 yr cycle.

Other highlights were watching a movie “Whale Riders” – wonderful – I recommend it to all- and watching Smarty Jones’ run to glory in the Preakness. Tomorrow I have to do some “brain work” now that my body is finally cooperating.

At last my spirits are rising – if not almost soaring, so I finally feel prepared to write about the rocky road I have traveled in the past week and about some of the wonderful highlights of the sometimes bumpy journey. Though I started feeling down, with nausea and diarrhea last Thursday, we nonetheless embarked on a visit to Grand Rapids to visit Karl and Stacy’s family. The trip itself was tiring with a 3 hr delay in Chicago, but the fun started when we arrived. Mikey immediately jumped into the car and pulled off my baseball cap and declared me to look “freaky” with my few remaining strands of hair. Morgan agreed vociferously and Matthew stood by and smiled as always. Then Mikey grabbed my wig out of the bag and ran around the yard declaring that he had Nana’s hair (he actually looked darling in it). Well that was the start. Saturday was really special because Karl and Stacy gave us tickets to the Barber of Seville (the comic opera by Rossini) including dinner out. The opera was truly first-rate, in fact the arias by the soprano Rosina were truly breathtaking. Then Sunday was to have been the special Mother’s Day Children’s Choir (Morgan) performance at the church. Well – we all screwed it up royally. First of all, Karl had two calls during the opera night resulting in his going to the hospital from 11PM-1PM after we returned from the opera and then being in surgery for 5 hrs on Sunday morning. Then I awoke very nauseous and despite my getting dressed for church, could simply not muster up the energy and went back to bed fully dressed. Bob decided he could not leave me so poor Stacy went to church alone with all three children. By the time she returned I was running a “critical level” fever for chemo patients and was told that I had to go the emergency room. The good news is that Dr. Karl – beloved by all in the hospital and especially by those in the emergency room – sheparded me through with VIP treatment from all his nurse and doctor friends. Conveniently, Karl also got to set an ankle of an incoming patient while waiting for me. As a result, we got out in 3 hrs rather than probably 5 after various tests and IV antibiotics. Of course by that time we had also ruined Bob and Karl’s golf date and my date with Stacy to take the kids to a play (she took them herself). But we still had a good evening together and it was great to see the kids.

Monday and Tuesday were not so good. But – relief is in sight!!! I have been diagnosed with C. difficile and am now on the appropriate antibiotics. This has lifted my spirits sky high and has me looking forward to tomorrow, to the lab picnic, and to soft shell crabs for dinner. So the sun is again shining and I am ready for the next chemo on Friday.

I am developing some rather painful blisters on the toes of both feet which are interfering with my plans to start jogging again. This is a common side-effect of Xeloda - the oral 5-FU drug which I am on. So I looked up remedies for blisters in Colin Fletcher's "The Complete Walker". Colin Fletcher is the first person to have hiked alone through the entire Grand Canyon and he has a lot of opinions on foot care. He thinks that twice daily treatments with rubbing alcohol will "harden" the feet. However, after a search of the house, I could find none. So I am presently massaging my toes with some Gordon's London Dry distilled Gin. If it doesn't work, I may just drink some and then try running anyway! In this "business" it's important to keep up your good humor!

So I have been delinquent in “blogging”. Why? Well the biggest reason is that I feel so darn good that I find myself no longer dwelling on thoughts of my disease, or even of the chemotherapy. Instead my mind is returning to normalcy and my thoughts are once again becoming consumed by my research which I love so dearly.

I rebounded remarkably quickly from the second round of chemo (May 23) and was back in the lab on Tuesday feeling ever so much better than at the same timepoint after the first round. I have now lost most (but not quite all) of my hair. So on Tuesday I got over another psychological hurdle and wore my wig to work for the first time. As difficult as it was for me to do, most people either liked it or didn’t even notice that it was a wig except that it is more “stylish” than my usual “standard girl scout”. In fact – to practice – I wore it downstairs for Bob’s approval on Monday night. He kept staring at me and asking me what it was about me that he was supposed to notice. So I have to conclude that Bob sees only what’s in my eyes or my heart – because he sure is unable to discern the difference between his almost bald wife in a 2” haircut and the “stylish” lady in the wig! But then, he can’t tell a dandelion from an azalea either!

My spirits have been buoyed up by the many visitors of late including Rik Derynck, Mina Bissell, Xin Hua Feng, Alain Mauviel and Bob Lechleider, Mike and Kitte Sporn, and Shizuya Saika and Akira Ooshima. Seeing one’s friends is the best therapy anyone can ask for.

This weekend marks a milestone in my progress – in Bob’s and my progress –to a new plateau in dealing with this disease. For the first time, Bob was confident enough to leave me and it was both therapeutic and confidence-building for each of us in different ways. Bob attended the Kentucky Derby with his brother (one of his lifelong dreams) and my sister came here to help me plant our summer annuals/ perennials. The special times together were memorable for all of us.