Summertime blues

We had planned our spring vacation since sometime in March.  We wanted to take Charlotte to the Dordogne area in France to visit the Lascaux caves (or more precisely, the reproduction of the original caves that have been closed for many years) and their famous cave paintings.  In the area surrounding Sarlat are many sites to visit such as the Musée de la Préhistoire that we were sure that she would enjoy.

Then my results came in concerning the lesion in my back and the need for radiotherapy.  The radiologist was so understanding about our plans and did everything she could to get my treatments started as soon as possible.  They were scheduled for once a day for 12 consecutive days.  Mr. T left on vacation with Charlotte and got set up in our B&B while I finished my last session and then joined them by train.  It was such a relief not to have to cancel that vacation!  Charlotte is growing up fast and we really wanted to have some time with her doing something that she enjoys.

The next time we met with Dr. D she essentially said that there was nothing else to be done for the moment but wait.  We had treated the obvious lesion, which had disappeared, and there were no other clinical signs that had to be addressed so she just told me to just take time off.

We were able to organize a visit with my cousin, Chuck, and his wife, Karen, in Seville where we were able to confirm the adage that ‘the rain in Spain falls mainly in the plain’.  This was followed up by a visit with his brother, Eddo, and his wife, Amy, in London for a few days.  I don’t see them often but it is always a pleasure to be able to catch up with them and rehash stories of our grandparents who lived in rural Mississippi.   

By the time that our travels were over, I decided to set up in Heuchin for the summer.  The construction site next to the house in Brussels made life unbearable with the jackhammers and drills that started at 7h30 in the morning.  I needed peace and quiet so I headed for the countryside with my cat, my watercolors, and my intention to really work hard in the vegetable patch.  Mr. T stayed in Brussels for much of the month tending to his affairs.

I was feeling uneasy about not having any treatment whatsoever and realized that it was impossible for me to “take a vacation” from my cancer.  This anxiety was exacerbated by the worst weather for the month of June that I can remember.  Usually it is one of the finest months of the year, warm and sunny, flowers in their full glory, the bees gearing up for the big summer push.  But here it was cold and rainy, almost every single day!  I had to turn the heater on.  From time to time I would dash out during a brief break in the misty rain and try to plant a row of seeds, but nothing would come up.  So I ended up spending a lot of time in bed being pretty miserable, convinced that while I might be “on vacation” my cancer cells had probably not gotten the message.  I could just visualize them enjoying the respite from the chemo and radio attacks, drifting about, getting organized, laying down roots, setting up their blood supplies, singing in unison “You gotta fight for your right to PARTY”,  ordering kegs, etc.

I did look forward to a big weekend that we had planned for a long time with friends of ours, two couples that we have known for quite a long time but with whom we had never spent more than just an evening together.  This was a chance to get to know each other better and I was so glad to be able to spend time with them.  No sooner did they arrive than one of my girlfriends took me aside and confided that she had just been diagnosed with bone cancer and would be undergoing some intense chemotherapy (the heavy artillery), following which she would undergo a bone marrow transplant of her own healthy cells.  After the transplant she would be required to spend three months in a sterile environment with almost no contact with the outside world with the exception of her immediate family.  What a blow.  I tried to imagine how I would have liked for someone to talk to me upon hearing such news.  How could I share my experience with her while keeping the focus on what was going on for her and not me?  For me, there was nothing worse than someone telling you “My aunt had such and such a cancer and blah blah blah”.  In fact, you don’t give a shit about their aunt’s cancer – you are totally preoccupied with your own cancer and the abyss of fear that lies just under the level of your consciousness but which manages to bubble up to the surface more often than you’d like.

I have to be able to take that fear out and hold it in my hands and tell someone else about it.  I have to be able to say out loud  “Deep down inside, I’m really afraid of dying from this”.   Once I take the fear out into the open, it loses its power, it ceases to haunt me.  It even begins to look a bit ridiculous.  It reminds me of being a kid afraid of the monster in the closet every night when you go to bed.  The next morning, you open the closet and see that there is no monster.  Not only to you feel reassured, but you feel a bit silly as well.

This is one of the hardest parts of this experience for me:  the struggle between the rational and the irrational.  The irrational is always there.  It’s a part of our reptilian brain, the most primitive part of our genetic evolution.  Fear allowed us to be vigilant and survive during dangerous times, as we had seen at the Musée de la Préhistoire, and we are wired for it.  In order for me to feed my rational self, I need to KNOW.  I need information.  I need the results of my PET scans, my MRIs, my markers.  I want to see what’s going on on the inside.  I want to be able to visualize what’s happening.  “Taking time off” was not working for me.

Then we had Chloé and Philou’s wedding to celebrate – a beautiful family experience – with just close friends and family.  Mr. T and Nicole were so proud to be able to escort their daughter to the town hall in Mr. T’s Traction Avant, with Michel (Émilie and Charlotte’s dad) as the official driver.  Alec was able to join the festivities in Brussels, coming by train with Jasmine who loves seeing her “cousines”, Lola and Alma.    Being involved in such a family event fuels that urge to be alive,  to perserve and see how the story turns out. 

The following Tuesday, I had my next appointment with Dr. D who informed me that the PET scan from the day before verified that the cancer was back in various sites in my abdomen and in a lymph node in my neck.   All of my anxieties were confirmed.  I just knew that this was what was waiting for me.  What next?  We discussed various treatments, including a pre-screening for a clinical trial based on immunotherapy that was beginning at Bordet.  In the meantime, I would start chemo the following Tuesday; a new molecule that would be administered once a week. 

Jasmine stayed on for almost two weeks, which was both incredibly wonderful and totally exhausting.  She provided the ideal distraction from my wondering woes but was also a challenge to keep her occupied.  I organized play dates; we set up the pool and enjoyed the summer weather that had at last arrived.  Then my neighbor and dear friend, Nathalie, went with me to Bovenant by train to return Jasmine to her folks.  She and I stayed for the weekend and enjoyed the relaxed atmosphere and tight social network that Alec and Virginie enjoy there.  I discussed with them what was going on and pledged to revisit my life style choices and what I can do for myself in terms of diet, exercise, meditation and detoxing my toxic relationships in order to reduce stress.  All of these factors have a proven impact on the immune system.  I came back home ready to get back in the ring.

Fortunately, Émilie had come to spend a good part of the summer with us, accompanied by her faithful pony, Prince.  Now fifteen, she is a delight to have with us.  She enjoys shopping (she makes the list and ensures that three-fourths of the list contains “chips” and “cookies”) and cooking, has a fabulous sense of humor, and an accurate sense of psychological observation about folks around her and their personal quirks.  Being around Mr. T and me gives her lots of material to work on, needless to say.

I returned the following Monday for my chemo only to be told that I would be unable to have it since my white blood cell count was dangerously low.   I was upset not only because of that but because the lump in my neck had grown considerably.  I asked to see Dr. D and fortunately she was on duty.  She confirmed that indeed the lump had grown and scheduled a MRI for my neck for the following week since I was coming back anyway for an MRI for my abdomen.  She squeezed an appointment in with her that following week as well.  I informed her that no one had contacted me about the pre-screening and wondered what was going on with that.

Upon my return to Heuchin I received a call from the clinical trial nurse who emailed me the consent forms for the pre-screening.  This would grant permission to have my cancer cells tested to see if they met the criteria for a specific receptor on their surface.  Now all I had to do was wait a week.   This was easy to do since Charlotte had now joined us and the four of us were enjoying our normal summer time activities.  For Charlotte this means staying in her pajamas days on end and playing video games on various electronic devices until we pry them out of her hand and make her take a shower from time to time.

This past Tuesday we met with Dr. D who had good news and a plan of action.  First of all, the first MRI showed several nodules and lymph glands in the abdominal area but nothing out of the ordinary from what I’ve had before.  Same places, small sizes, no vital organs involved.  Secondly, my tissue sample tested positive for the immunotherapy clinical study so I will be admitted to that.  (In fact, to be admitted you have to have tumors of a certain size — at least 1.5 cm — and some of the ones in my abdomen are 1.6.)  This is REALLY good news. Lastly, the lump in my neck is a bit of a problem since it has visibly grown and is becoming bothersome.  Therefore, I will see the radiologist on Friday to get set up to zap that sucker with radiotherapy.

After the radiotherapy sessions (I won’t know how many there will be before Friday), there will be a “washing out” period of five weeks with no treatment of any kind before entering the clinical trial.  The only drawback for the clinical study is that it is very time constraining.  Once it starts, I have to be there on day 1, day 3, day 8, etc.  No exceptions.  It may only be for a blood test to see how my body eliminates the anti-bodies or an exam to see if the heart is affected.  So it won’t be like “Previously on Cancer Clinic” wherein Dr. D. would say ‘Oh, so you are going on holiday.  We’ll schedule your treatment for Tuesday instead of Friday.”  This is serious science and I’m the little lab rat.

It’s a small price to pay.  I’ve been convinced for a long time that this type of treatment is the new future for treating cancer.  I’m relieved that at last this is available to me and I’m convinced that the results will be promising.