It’s my party and I can cry if I want to

 It’s been a very rough summer on many fronts.  The incessant treatments, once a week for three weeks (every Friday) and then one Friday off, have taken a toll on me physically, emotionally and psychologically. 

At the beginning of the summer I noted a pattern: I felt OK the Saturday and Sunday following the treatment and then I would crash through the floor on Monday spending all day in bed.  Tuesday could be just Ok or fine and then by Wednesday I’d be “back to normal”.  So I could enjoy Wednesday and Thursday and then return for my next treatment. 

Thierry complained that the cortisone that they administered before the chemo drip made me irritable and aggressive, which is a common side effect and one that only acerbated those traits of my own personality.   In other words, it made me even bitchier than I usually am. 

So to see if I could do without the cortisone and perhaps improve the marital atmosphere in which we have been floundering since (this summer? the diagnosis? before? ) I requested that they remove the cortisone.  I didn’t notice any effect on my irritability but it certainly did increase my melancholy because now Saturdays and Sundays, as well as Mondays, became “down days” leaving me only Wednesdays and Thursdays.  At this point, I started to wonder, “what’s the point?”  Where is the quality of life when I am, in fact, just a slave to the protocol in order to survive?

So we kept going through the motions of our normal summertime activities, hosting various grandchildren or groups thereof in our little corner of paradise in the north of France.  The little ones probably didn’t detect the dark undercurrents of either my thoughts or our relationship, which was becoming more and more frayed.  The older ones had their own preoccupations.

At one point during the summer I had another cystoscopy, which confirmed that the treatment was pushing back the cancer.  One of the lesions had completely disappeared and the larger one had regressed considerably in size and color and had even a coating of necrotic tissue on it.  This was an excellent sign.  But I was still scheduled for more treatments, through September and even October.  It seemed never-ending.

The week following my last “Freedom Friday” as I refer to my one in four Fridays where I don’t have to go to the hospital, I noticed that I had blood in my urine again.  Three days later, the same thing.  This time I told Thierry.  Then again.  I’d like to be able to say that I remained totally level-headed and pragmatic saying “Hmm, there’s blood in my urine.  I’ll have to mention this to Dr. D when I see her on Friday.”  But that’s not how it works in my mind.  I just go immediately to that place of fear imagining my bladder full of new tumors or that the existing one had started to eat through my bladder wall.  Thierry had already returned to Bruxelles and I was on my way in my car when I made a pee stop.  Boom!  Bright red blood as well as blood clots, and now I think, “I’m haemorrhaging!”,  and wonder what sort of invasive treatment I will have to undergo to make it stop and to make the nagging weeklong pain go away. 

We go to the emergency room.  I pee in the cup.  The young urologist asks me why I’m upset and panicking.  "It’s really nothing.  Maybe only a bladder infection."  They’ll do a culture and I should call back on Monday. Fortunately I see Dr. D the next day and she schedules a cystoscopy (Sept. 8) so that we can understand the cause.  She explains that it might be the tumor breaking away and exposing blood vessels and that even small amounts of blood in the urine can seem impressive.  At last, I can start to calm down.

A bit of calm perhaps, but I can find no place where I can be protected from the unrelenting stress.  I so desperately need to be free of the constant worrying and wondering about my own disease, and the harassment of life in general. 

Not only has this taken a toll on me but also it has taken a toll on our marriage, which was not the most stable of affairs as anyone that knows us well can attest.  Like all marriages there are ups and downs but our ups are mountainous and our downs abysmal; the ups were fewer and farther between.  This adds to the stress and the sense of despair.  Why can’t we just be nice to each other?  

In a brief moment of lucidity, we managed to agree to cancel my birthday party that I had requested months ago.  I thought it would be a great idea to get the family together to celebrate my 65^th.  So Thierry had sent out the invitations and rented a great place at Cap Gris Nez – the point in France from which we can see England -- and organized some activities and the food.  But the will was just not there.  We are exhausted.  We cancelled and felt relieved.  The farce is over, send home the clowns.

From where I am now, I can no longer afford any more pretending.  I only have time for what is real and genuine and kind.  That and nothing more.  I will cull everything and anyone that doesn’t fit these parameters from my life because there is no room for anything else.

During this summer, I re-read a book that I picked up in England during that springtime jaunt with Virginie and Jasmine, “When Breath Becomes Air, What Makes Life Worth Living in the Face of Death” by Paul Kalanithi. It is the poignant story of a brilliant neurologist/neuro-surgeon who is diagnosed with a terminal cancer his last year of residency.  These are his words:

Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence – and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realisation.  The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.  It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach.  I plod, I ponder.  Some days, I simply persist.

Although I am currently not in the “last stretch” of the race by any means, every word of his resonates in me as being true.

As in our case, the author’s marriage was suffering before he was diagnosed.  His wife explains, in the epilogue,

We joked to our close friends that the secret to saving a relationship is for one person to become terminally ill. Conversely, we knew that one trick to managing a terminal illness is to be deeply in love – to be vulnerable, kind, generous, grateful.

As it said on our wedding invitation, an event occurring eleven years into our relationship:

Some thought that it was about time,

Some thought that they still had time.

I just hope that now we choose to use our time wisely.

Square One, The Return

After four cycles of my immunotherapy trial, my scan results showed that the disease is no longer stable, but is progressing. Dr. D immediately took me out of the trial and we decided to meet again in two weeks so that she could propose another treatment solution.

In the meantime, I headed to Bovenant for Alec’s birthday – 38, is that possible? – then on to the New Forest in Hampshire, England with Virginie and Jasmine for a fun-filled, action-packed vacation “entre filles”.  Jasmine has only recently begun speaking English so we wanted to give her a bit of an immersion at the same time that we gave ourselves a nice holiday.  She was really impressed with our trips on the ferry and the fact that we could go to the cinema and watch Moana on the boat !  We met up with Jeni and Wendy and their new puppy, Willow. The highlight of our trip was to Peppa Pig World, a theme amusement park for little kids.  She has been watching Peppa Pig animation as part of her English home-schooling and was totally enchanted when she got to meet Peppa and George in person.  By the time we got back to Brittany, she was literally singing the blues with her own improv rendition of  “I gone away from you”.

Once back in Brussels, we met with Dr. D who essentially proposed the same chemo combo that I had originally started with (taxol + carboplatine) in one of three different treatment protocols.  For the first time, I felt that we had reached the end of the line as far as treatment choices were concerned. I was so tense during this meeting and had been since I’d gotten back, that my neck and shoulder muscles felt like steel cables.  This was not helping the overall situation.

We reached out to our good friend in the states Dr. G who offered to put me in a trial over there based on sequencing the tumor tissue for known mutations and then matching any finds against a database of molecules known to react with those mutations.  Mr. T started looking for flights; I was in contact with the study nurses in Boston and here in Brussels getting all the information ready to transfer over.  It was a bit frantic and felt somewhat like grasping for straws but I just couldn’t accept the fact that taxol+carboplatine would be my only option.  And I really didn’t want to go bald again.

I had a cystoscopy on the following Friday and I finally got to meet my cancer face to face. There they were: two swollen red knobs against the healthy, creamy-pink lining of the bladder.  The verdict was in now.  There would be no trip to the states since we would have to move fast now.  I’d never had any organ invaded as yet and since these lesions were very small they had to go.  I began looking at turbans online.

That week I went into a tailspin feeling a bit hopeless and tired of the whole affair.  One of the hardest things that I struggle with is not so much the “fear of dying” part which does enter the picture when I sink too low, it’s dealing with my emotions. I can go from being quite resigned in the worst sense of the word to panic in the course of a few minutes.   I tend to fold in on myself, flee contact from others, stay in bed, sleep a lot.  I feel that I’m letting my friends and my family down by not being “on top of my game”.  But I’ve realized that I have to fall below the flotation line before I can muster up whatever it takes to get back on board.

When we next met with Dr. D we looked at the images from the cystoscopy and she explained that this meant there was only one way ahead:  taxol+carboplatine once a week for three weeks, and then one week off.  So I now had my program and I knew where we were heading and what the effects might be and I felt incredibly relieved and light-hearted.  I was ready to go.  There was a clear plan.

I made an appointment with my hairdresser to get my hair cut as short as possible (that will be tomorrow) as a way to take action in order to feel as if I still had some control over my body and its destiny.

We showed up for my first chemo last Friday (3/3) and as the nurse was explaining the side effects of the drug, I asked her if the cold caps were efficient against hair loss.  A cold cap is a frozen ice pack that is placed on your head and tightly bound in place during the course of the chemo drip.  (For me that would mean about two and one-half hours.) It causes the blood vessels in the scalp to constrict thus restricting the amount of chemo that reaches the base of the hair follicles.  She told me that it could be between 60 and 70% effective, so I said bring it on.  It was quite uncomfortable for about 15 minutes and she warned me about this but then reassured me that the discomfort would wane after that.  So I tried it and we now have to wait and see.  

Doing whatever it takes.

I keep talking about this royal “we” when in fact I mean Mr. T and me.  He has been steadfast and constant and encouraging even though I suspect he has his own well-hidden turmoil going on inside.  He invited our good friends, Nicholas and Véronique over for supper and I was so angry since I really didn’t feel up to it.  But he promised to help in the kitchen, cleaning the house up before they came, preparing the apéro, setting the table, serving the meal, clearing away afterwards.  It was a great evening and I was so grateful for his initiative.  I also realized that with your true friends you don’t have to be “up to it” all of the time;  they take you as you come and what better sign of friendship could you hope for?

There are worse things

Summer was a whirlwind of activities with the house full of visitors as is usually the case here in the country house.  It was a relief to be alone once everyone left.  The constant entertaining is a great distraction but being distracted only delays the inevitable confrontation with my feelings of impatience, anxiety, mixed in with a dash of anger.  I took to my bed and allowed the waves of depression to wash over me, sleeping for long stretches.

The radiotherapy was no picnic but I managed to deal with the side effects relatively well.  I couldn’t swallow for about a week, I lost my voice for almost two weeks and my neck had an impressive ‘sunburn’.  The good news is that it worked.  The lymph node in my neck has significantly reduced in size.

I started my new treatment in the clinical trial at the end of September.  My tumor cells had been tested in the screening process for a certain receptor, anti-Mullerian hormone receptor type 2 (AMHD2), and my tests were positive.  These receptors are present in normal ovarian cells, but are supernumerary in cancerous ovarian cells. The treatment consists of administering a certain protein (via the usual drip technique used for chemo).  This protein attaches itself to the receptor much as a key fits into a slot.  The presence of this protein “tag” hanging off the cell alerts the immune system indicating that this cell is not normal and needs to be eradicated. 

The first two months were very time constraining since I had to undergo various tests before during and after the treatment to insure that there would be no adverse reaction.  Although this sort of treatment is what I have been waiting for for years since much of the cancer research points to immunotherapy as the way of the future, I still caught myself feeling resentful that I had to go to the hospital so many times per week.  Once again I found myself struggling between the rational (‘this treatment may save my life and aren’t I lucky to be in this trial’) with the irrational (‘but I’m going to miss my watercolor class’).  I really began to feel like an impetuous child who only wants her way.  I refused to start any new projects (sewing, knitting or otherwise), refused to take on any other engagements, and tried to make myself continue with those activities that I do for me:  daily yoga, weekly watercolor and aquagym.

Mr. T and I started ballroom dancing and that was a welcome commitment.  It’s the best couple’s therapy we have ever done.  All about communication, coordination, giving in and letting go, and trust. I discovered that I had a lot of room for improvement in all of these areas.

After eight sessions of treatment I had a CT scan, which showed that the tumors were stabilized:  no significant change in size.  I was a bit disappointed but Dr. DeV explained that this was excellent news.  I have a treatment with absolutely no side effects that keeps the disease in check.  Now I only go in every two weeks for my treatment and am less hassled by additional tests.

So all in all, I’m in really good shape.  I’ve been peeking out of my self-contained shell enough to make a dress for Jasmine’s birthday (even if it was too big for her this year) and a pair of socks for Virginie for Christmas. 

After having suffered through the US presidential elections this year, I realized that there are worse things than having cancer, such as having your country spin out of control and leave the realms of reason, goodwill and truthfulness.  How many people will suffer under this reign of terror?  The only way to remain sane amid the insanity is to reach out to others and remember that if you can’t be anything else you can be kind.

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.