Anita Roberts

Monday morning I had my ascites tapped. The procedure itself is rather inconsequential. In about 30 min I was drained of 3.5 liters of cloudy yellow-green fluid and by the next day had lost 4-5” in girth and 10 lbs. I expected to feel immediate relief of the pressure, but no, immediately afterwards I could not stand up straight and walking made me feel as if all of my innards were trying to rearrange with each step. After dropping off the fluid to my lab – where they are doing myriad things with it that hopefully will give us some insights into the nature of the beast that lives within me – I went home and slept for 4 hrs. Then progressively in the afternoon I began to have severe intestinal cramps and back pains. Unable to do much else, I retreated to bed, sleeping a mere 13 hrs! The next morning I went to the lab, but still could not move comfortably and felt rather faint, so I came home in the afternoon to sleep another 4 hrs and then 10 more at night. Today I am beginning to feel like my innards have gotten used to the reduced pressure and finished their rearrangements and that my electrolyte balance is probably becoming normalized. I am still very short of breath, but otherwise on the road to full recovery for a fun-filled Christmas weekend. So now I am enjoying the transient pleasure of wearing all of the pants that no longer fit my expanded belly and hoping that my present chemo regimen can keep the ascites down or at least accumulating slowly enough that I don’t have to undergo this procedure again in the near future.

Traditions nourish the soul and kindle hope for the future. I have been baking Stollen (a German raisin/almond bread) since 1962, when I was a sophomore at Oberlin College, living in the German House. In trying to decipher my grandmother’s very German handwriting, my roommate and I decided that “Zitronen” meant the whole lemon (should have been only the rind). As you might imagine, the lemon juice made our dough quite acidic and it refused to rise. Our housemother, a Christian Scientist, told us that she would “heal” the dough. After 4 days sitting in her bathtub it started to rise! Probably a few acid-tolerant mutant yeast finally got up enough “umph” to do the job – but of course our house mother had other explanations. It made a very lemony, but nonetheless quite good stollen – the first of many hundreds made in the ensuing 43 years, with only one interlude. So last night Bob and I played German Christmas carols at a deafening pitch and mixed 45 lbs of Stollen dough. For extra good luck we covered each pot with a towel from the “Seegarten”, a hotel in our family in my father’s home town of Ueberlingen. For the first time we decided to let it rise overnight – resulting in a sleepless night for me since the dough threatened to overflow its pot and slide into the “drink” about every 2 hrs (for years I have been floating the pots in a bathtub full of warm water just to make the whole process risky)! Today, accompanied by more Christmas music, we’re trimming the tree and baking like professionals with a continuous cycle of 2 pans in the oven and 6 pans in various stages of rising, thinking of the pleasure of giving Stollen to our friends as a symbol of another year of “living with it” and our celebration of life.

This is the New Day! Yesterday I started with a new chemotherapy regimen with the Avastin still at the higher dose of 10mg/kg but now with Xeloda (the 5-FU pro-drug) taken twice a day continuously. This is a variation on the concept of “metronomic” therapy (tick/ tock) based on the theory that it is possibly more beneficial to administer lower doses of the chemotherapy continuously than to give higher, more cytotoxic doses and then allow the cells (normal cells but of course also tumor cells) to recover. Dr. Marshall has dropped the dose of Xeloda by one third and I hope that will make it more tolerable than previously. So far, so good. The Avastin knocked me out again yesterday – I came home and slept for 3 hrs – but today I feel quite good, and I am not wearing a PUMP!! Freedom!!

The other exciting news is that I will have my ascites “tapped” on Monday and have permission to take it all back to the lab to try to grow the tumor cells and ultimately get a molecular signature which may help us decide on future therapies. Several of us met today and set up our strategy. I am so fortunate to work with such wonderful colleagues/friends who are willing to help me with this. Just the thought of possibly getting some information about my specific cells has me sky high.

“Hope is my philosophy” (from the New Day sung by the Kings Singers)

I made it through the last bench mark of the year – the Komen Foundation Brinker Award in freezing San Antonio. It was an emotionally draining experience for me. Despite the fact that the entire conference was focused on breast cancer – for me it was MY disease. My brain morphed every discussion of late stage disease, of palliative treatments, into my own situation. Cancer, clinical trials, survival data …it was everywhere in surround sound on huge screens – I could not escape it. Living with cancer, I need to find space where my brain can think other thoughts that block out the disease. But there was no way to escape. The worst was the symposium on metastasis where I got so depressed that I think that I activated my enteric nervous system (called a second brain in the gut) to the point where I actually became ill with strong intestinal pains for the next 8 hrs. I came back to the hotel from that session and simply broke down crying uncontrollably – something that I haven’t done for quite a while. Sitting in the audience with a belly full of micrometastases and malignant ascites made it all quite difficult for me to take.

It might also have been the emotional experience of the previous day’s award that set me up for my fall. I was on an adrenalin high the entire day, and I think that I paid for it the next day. The talk in the afternoon went OK, but then at the Awards dinner I was overwhelmed by the presence of so many women who were either survivors of breast cancer or otherwise committed to curing the disease. Many of them wanted just to shake my hand and tell me to keep on fighting – that was tough. And then in the introduction to the presentation of the awards, Cliff Leaf, a writer for Fortune magazine who recently published “Why we are losing the fight on cancer”, said that although he had never met me, he knew me very well through my blog. In fact, he had read it in its entirety and when he first met me that evening said, “despite what Mikey says, I don’t think that you have big ears”. Anyway with that introduction, my remarks had to focus, in part, on my disease, and it was difficult for me to keep my composure. It was so impressive to see and experience the commitment of the women of the Komen organization – this groundswell of support just could not happen, I think, for colon, lung, or prostate cancer. I now have a gorgeous engraved glass sculpture that will remind me of the event and those wonderful dedicated people.

Some of the abstract/ presentations at the conference were really eye-opening (I say this in jest). Like the one that described the “chemo fog” (the mental confusion associated with chemo treatments that I often experience) as being related to chemo-dependent fatigue. Duh!

Also, listening to many of the talks that discussed molecular profiles of tumors, or of circulating metastatic cells, I again became distressed with the lack of that kind of information on my own disease. As a scientist, this truly bothers me. Members of my lab have been discussing ways of getting a molecular signature from the cells in my ascites and if I do get it “tapped” they will be ready. I want the information so badly that I find my brain often consumed with arguments pro- and con regarding continuing to tolerate the present expansion of the ascites and the associated pressure in the hopes that some adjustments in my chemo will get it under control or tapping it for experimental purposes (which, if the problem isn’t controlled, will simply allow it all to re-accumulate). I am confused by the fact that everyone tells me I don’t look like I have cancer while I know that something is inducing this ascites to expand, after many months of being quite stable.

I have to add one humorous note – that for the first time this year I was not wearing my sister’s clothes for the award. Since I had decided at the time of my diagnosis almost 20 months ago to forgo buying any new clothes, and since my sister thinks that none of my existing outfits are fit for such occasions, I have worn “borrowed” outfits of her choosing throughout the year (and was very pleased and proud to have done so). But, a few weeks ago, I finally decided to celebrate my existence and bought two beautiful jackets and pants (with my sister’s help) and happily wore them on this occasion.

This trip brings to an end (in terms of my scientific life) a totally fabulous and unexpected year. I made it to everything as scheduled and delighted in each occasion.

Living with cancer is living with the side effects of chemo. For me, luckily, the side effects of my treatment for the past 9 months have been very mild manifesting themselves primarily in the form of extreme sensitivity of the hands (lasts for about 5 days each cycle), somewhat lesser effects on the feet (if I don’t walk too much in the first 4 days of the cycle) and fatigue, which typically has meant that I might need to take an hr nap when I get home from work before I have enough energy to cook dinner. But the fatigue has taken on a new dimension with this last treatment. I don’t know if it is related to the doubling of the dose of Avastin (in an attempt to control my ascites) or to the gradual wearing down of my intrinsic defenses, but I have been overwhelmed with lethargy that is just starting to abate today, 5 days post treatment. The morning after my chemo, I had great difficulty getting out of bed – but once I got to work I was OK, though not operating at full power. The next two days were similar, but Saturday I literally could do nothing but sit and THINK about all the things I should be doing. Saturday night I slept 11 hrs, then another 30 min after returning from the YMCA, and later another 30 min after returning from a neighbor’s party. Now I finally feel a return to “normal”. Regardless, I am most “alive and well”.