Anita Roberts

It was a milestone of a day! I gave my first invited scientific lecture since my diagnosis in March. Not that I haven’t had other invitations, but until now, I had not been sufficiently confident in my health status to accept them. This was a simple start – locally at Georgetown University, but nonetheless a milestone. And I enjoyed every minute of it. It was so stimulating to get fresh perspectives from talking to other scientists. I realized today how much I have missed it. If I can remain stabilized with the immunotherapy, I might even get confident enough to start traveling again!

It was amusing to me that several of my colleagues who had not seen me for a while thought that I had a “chic” haircut, not knowing that this is the 1 ½” recovery from chemo “do”. Of course, one other change is that now my hair is quite curly – must be from mutations in the hair follicles caused by the chemo. There’s a bright side to everything – now I can stop eating the bread crusts that my mother always told me would make my (straight) hair curl!

Whew! This has been a difficult and very discouraging day of reading about surgery for gastric cancer. Left on my own, with Bob on a trip to Boston, I can’t seem to escape my desire for knowledge about this disease – but it is so dispiriting. As well as I feel at the present, I can’t be a Pollyanna and think that I have this disease beat, or even that my immune system has resulted in a transiently stable state of regression. Rather, from everything that I read, it seems that no one survives stage IV disease. Yet, I can’t give up hope that I might be able to live with this disease at least for a year or two. And I can’t stop myself from mounting an aggressive quest for information and opinions from experts. My life is on the line – my ability to continue to be a part of this exciting and enriching here and now that constitutes our daily existence. Encouraging me are the facts that probably very few if any people have been treated with the immunotherapy protocol that I am presently enrolled in, and not even very many have had the response that I did to the initial chemotherapy. Bob and I have some very difficult decisions ahead and will need to have discussions with as many surgeons and oncologists as possible. We start at the NIH on November 1 when I get my next vaccine boost. Meanwhile – I have just checked off another day of running, feeling well, and enjoying my existence! Now it’s onto the next one, and then the next…..

It’s difficult to write blogs these days when I am feeling so “normal”. I have had even more good news recently in that analysis of biopsies of my stomach tumor taken October 7 failed to show any tumor cells. This is truly remarkable and unexpected. Since there were tumor cells in a biopsy taken June 1, I have to conclude that the immunotherapy is probably working. To think that I might be cured by a Phase I toxicity trial is truly unbelievable! Of course this is truly dreaming. Rather it is better to think that we have scored a home run in the first AND second innings and are now enjoying the satisfaction of being ahead in the game. But there are still many innings to be played. Nonetheless I wake up each day finding it hard to believe that I am still alive and that I feel so good. I certainly did not expect either at this juncture.

Immediately after getting my good scan on Oct 1 and being cleared to enter the “extension” phase of the trial (monthly boosts), Bob and I scheduled a lot of travel. As part of that we visited Karl and Stacy this last weekend in cold and blustery Grand Rapids. The kids were excited to see me with real hair (Mikey pulled on my hair and then announced to all that Nana was NOT wearing a wig!). Best of all, after literally being blown off the 400 foot Sleeping Bear Dunes above Lake Michigan, we spent a joyous day together in Traverse City in a hotel with an indoor waterpark (Great Wolf Lodge) and I am now an addict of waterslides! For someone who has never been able to tolerate any rides including Merry-go-Rounds, I was astounded to find that I not only didn’t get nauseated by the waterslides, but I thrilled to them! I couldn’t get enough! It was such fun to be a child again! So life is not only good, it’s unexpectedly terrific!

Today was a true celebration of life. I felt like a popcorn kernel exploding with joy. We ended our weekend at the beach with an unexpectedly mentally uplifting, wind-assisted (one direction only, of course) 5 mile run. The sky and ocean were very stormy and angry, but every so often the sun would break through the clouds and cast streaks of glittering diamonds across the ocean. Pelicans were intent on finding lunch and would glide on wind currents in the curl of the waves then hover, head down, scanning the surface for their meal. Then Zap – a straight dive-bomb into the water. I wonder how they manage not to get a headache.
We have a new motto: 5 miles a day keeps the cancer at bay!

On running…..I have been running off and on for probably 35 years, peaking in our 3 “1000 mile” years and in the 2 years that I spent training with Bob for marathons. But, to be honest, I have never enjoyed running. I have always relished the feeling of accomplishment that was associated with it, but never the actual running itself. Now all has changed. Running (or, at night, walking) now gives me my most pleasurable moments. It is the time when I feel my best both physically and mentally and the time when I feel like I am actively defeating this disease. While running, I envision that I am inducing signals in my liver and lungs that tell the cancer to “stay out”. I now run with exuberance and with a purpose. I have started each day for the past 6 weeks with a 2 mile run with Kiara – it’s my indicator that I’m alive and well for another day. I would run longer, but I have to temper that with my eagerness to get into the lab. But at the beach, Bob and I generally run 5-7 miles. I truly thrill to every barefoot step on the wet sand or in the foamy tips of the tongues of the waves. It makes me feel so alive and so whole. Last night we had a soul-soothing walk on the beach under the star-lit sky (even the Milky Way was visible as a swath across the sky). This morning we had an invigorating 5 mile run. Since it was a little too cool to go swimming, I had a few “baptismal” sessions with my friend the ocean, asking it to give me the strength to live life to the fullest and to coexist with this disease. I think that I can.

It’s been difficult to handle the intensity of life since this great change in our lives last March. In 7 months we have gone through such powerful and sometimes overwhelming emotions – first thinking that I had little chance for survival and then going through the ups and downs of what I’m sure every cancer patient experiences as your future hangs on the outcome of this scan and that test. Then with every new hope comes another frantic attempt to fit in everything that you want to do in whatever window of time you think has been given to you. Of course, in reality, none of us ever knows if we will be alive tomorrow. But for me personally, I had truly never even contemplated my mortality. I was certain that I would live into my 90’s. Now – with few exceptions – I think everyday about how much longer I have and what I want to do with that time. I can’t read a book or watch a movie because I feel it is wasting my precious time on this earth. I feel a need to accomplish things – to enjoy doing things together with Bob, to spend time with my sons and grandchildren, and to optimize my “last hurrah” of scientific research by writing papers, getting my fellows jobs, etc. I don’t want to leave this world with anything in a mess or with any regrets. But I’m certainly not leaving yet…nor do I have any idea how much longer I have. If I did, I could relax a little more. For the present I have set my sights on April – which I thought was a real stretch. But then on Friday my usually very cautious oncologist teased me that I was being “short-sighted”. He feels that I must be responding to the immunotherapy, because he finds it difficult to imagine that a very aggressive cancer like I have could remain quiescent for 4 months without chemotherapy. He is optimistic that I might have a good run with this protocol. Both Bob and I were elated! I’ll feel more confident with this interpretation if I have another clean scan in 2 months. Maybe then, at last, we will expand our future plans and maybe then, I can learn to relax a little more!

We’re experiencing a wonderful sense of both joy and relief. Yahoo! I’ve been given another precious 2 month lease on good living. My CT scan yesterday unbelievably again showed no metastatic disease and no involvement of lymph nodes – just the stomach lesion. I also had apheresis to collect lymphocytes to assess their activity against the MUC1 and CEA antigens. Although there is not a strong enough correlation to be used as a prognostic indicator, previous experience with this protocol shows a relationship between a strong lymphocyte response and a tumor response. So I am anxiously awaiting the results. Then on Thursday I will have another endoscopy and biopsy to see whether there are lymphocytic infiltrates in the stomach tumor and whether there are still viable tumor cells. This additional information will let us know a little more about where I stand. The present analysis suggests either that the numerous micro metastases visible in the initial surgery have been suppressed or eliminated by the chemotherapy and/or the immunotherapy, or that the remaining disease is rather indolent in the absence of the goodies provided by my ovaries. Those possibilities cannot be distinguished since, after the initial surgery, I have never had metastases visible on CT scan. Regardless, to have no metastatic disease at 7 months post diagnosis is indeed a very good sign. Greg surprised us and flew up for the weekend, and that has made the celebration even more special.

I had been very apprehensive about the outcome of this scan and had been spending a considerable amount of time exploring possible “next” approaches. Especially for the past month, I often felt convinced that the disease was progressing despite my outward signs of “good health”. In thinking back, I now know the basis for this. For the first 4 months following surgery and during chemotherapy, I was in such continual distress with nausea, diarrhea, etc. that I lost any sense of “normalcy”. Then in the period marking my recovery from chemotherapy and entrance into the immunotherapy trial, I started interpreting what were probably “normal” intermittent feelings of discomfort in my gut as possible indications of metastatic growth. Now, with this clean scan, I have a whole new sense of well being and confidence. Maybe this will also allow me to relax a little more and not continually worry that the “good times” will soon be over. In fact we are now scheduling trips to visit Karl’s family, for Bob to go to the Breeders’ Cup, and to visit my cousin in Phoenix. Even Thanksgiving will fit in before the next scan and decision point. Everything was on hold, since we worried that I would have to go back onto chemotherapy. But today I am sufficiently infused with hope that I would like to predict that I will be able to remain in the immunotherapy trial for a good run – I’m aiming at least for April! Why not! Looks like I might have scored a home run in the second inning too!