Standing on the Outside

It's been a week today since my last chemo session and this morning is the first morning that I've awakened feeling that today could be a "normal" day.  The chemo is apparently effective at attacking the cancer cells, but the side-effects (nagging pain, numbing fatigue, relentlessly pounding heart) are incredibly efficient at wearing away any sort of psychological façade that I have managed to create.  The façade that says '' you can beat this", "you have to be strong and above all, positive", "you're doing all the right things".  All notions of being who I'd like to be - kind, patient, polite, understanding -- suffer from the abrasion of the pain and tiredness.  I'm left feelling incredibly vulnerable, fragile, lonely and scared.

Although I see that life goes on for those around me -- preparing for a birthday party, a retirement cocktail or a new baby on its way, dealing with a relative who is ill, worrying about problems at work, grieving over the loss of the family pet -- I find it difficult to stay connected.  I feel as if I'm standing on the bank and watching the river of life flow by for others, but somehow I'm only an observer.  I'm in my own world and I have to struggle to remember to ask those friends who call about what's going on for them, struggle to remember that it's not all just about me, struggle to stay in the stream of life.

I have to constantly remind myself that those around me don't know and can't really know what's it's like for me.  They are living the "friend/husband/daughter/son of a cancer victim" role.  For this particular play, I'm the only one who has the starring role.  I must remind myself that everyone around me is doing the best they can.  The reactions of friends and family are incredibly varied -- those that have come out of the blue to be supportive, giving an occasional call, inviting us over for supper, and those that avoid calling at all (for fear of "bothering" me, or just fear alone).  For those that can't be there for me, I must realize that this is part of their story and I don't have the right to judge them.  For those that do step up to be there for me,for those that I can call and be honest about what's going on for me even on a bad day,  I'm incredibly grateful.  I feel  buoyed by their love and support.  

Mr. T and I made a special appointment with the surgeon this week to get some clarification on why she may be hesitating about whether to operate or not.  I told her that I wanted her to be honest and she proceeded to explain that heavy surgery (we're talking 10 hours on the operating table, 4 days post-op in intensive care, and 10 days total of hospitalization) is not always recommended for ovarian cancer that has metastasized outside of the abdominal cavity.  In other words, I would suffer from the negative effects of the surgery and the result would be that I would still have cancer.   Having accepted that, I let her know that it was important for me to get rid of the bulk of the tumors - I want that stuff OUT! - and that I was counting on the "mopping up" phase to take care of the remaining sites all of which are very small (< 1 cm.).   

The mopping up would include more chemo, as well as other approaches, including a customized vaccine developped from my cancer cells removed during the surgery.  The immunologist that we consulted has done this for several of his patients based on protocols used currently in the States for colorectal and lung cancers.  He essentially extracts the signature  proteins of the cancer cells and presents them to my immune system.  I think of them as "Wanted, Dead or Alive" posters that the lymphocytes will carry around, allowing them to home in on what's left of the cancer and erradicate it.

By the time we walked out of her office, we both were reassured that she does indeed plan to go through with the surgery, and that providing the cancer cells for the vaccine was absolutely not a problem for her.  This made me feel back on track, that we had an aggressive plan of action, and that I could improve my chances of survival.  

At the same time, I'm faced with the stark reality that despite all of my determination to beat this, all of my efforts to explore possibitilies of treatment, all of my "staying on top of it" psychologically by dealing with my feelings and not stuffing them,  all of this just might not be enough.  We all know that we all have to go sometime, but I have never been personally faced with the possibility that "sometime" for me might not be thirty or forty years down the road.  No wonder that the fear of the "D" word wells up in me from time to time, like a wave of nausea.

Fortunately, one of my most power tools in my get-well box is Charlotte-therapy.  Spending time with her and seeing life from her 5 and 1/2 year old point of view, ties me tightly down to the here and now, to living in the moment.   There are still tons of things that we can do together despite the fact that I'm too tired to run races -- reading her favorite Schtroumphs (Smurf)s stories, watching "big DVDs" (video cassettes), playing pretend games with the stuffed animals.   Yesterday we made peanut butter cookies together, and since she wants to do it all herself and is very reasonable about following instructions, she mixed the batter with the electric mixer with just a little supervision from me.  Of course, I had to negotiate to make sure that there was some batter left to actually put in the oven, but we came to an agreement. 

During the going to bed routine last night, she and I were piled up in the bed with our herbal tea, having just finished "Schtroumphs-Les-Bains".  She reached over and pulled my bonnet down over my eyes and giggled, and then very seriously suggested "Mamie Lee, while waiting for your hair to grow back, you could wear a wig".  I told her that I would give it a try.

Bee-ware!

What a real treat last week!  I spent three days attending a conference on bee pathologies, covering everything from varroa (a mite) to viruses, bacteria, fungi, and even other insects.  Fascinating stuff! From nine to five every day I was back in class, taking notes and asking questions – it reminded me so much of my college days in biology, especially in parasitology class.  The lecturer was J-P Faucon, Director of the Laboratoire des Pathologies des Abeilles, one of the leading research centers in Europe in this domain. The conference was held at the Lycée Agroenvironmentale near Arras, France so I stayed at our place in Heuchin and drove back and forth every day.

One of the most enjoyable aspects of the conference was meeting other bee nuts.  The average participant was in their 50’s, male, and either amateur or semi-professional.  The typical opening conversation was along the lines of “Where are you from?  How many hives do you have?” The most experienced beekeepers were so open about sharing their know-how with beginners like me.  One of the highlights of the day was eating together in the school cafeteria, a culinary experience in France compared to what I remember from my high school days.

I had signed up for the conference in January with no idea at the time of where I would be in my treatment cycle.  However, I figured that if I registered, I could always cancel, whereas if I didn’t register I couldn’t attend.  Planning ahead for events that are NOT related to my cancer is so important for me since it seems to extend my horizon.  The bee conference is an excellent example because it reminded me that I’ll have other things to do “on the other side” of the treatment, such as taking care of my two hives.

For the moment when I look at my diary, it seems heavily cluttered with doctors’ appointments; exams of all sorts (blood tests, PET scans, MRIs, etc.)and Round 4 of the chemotherapy coming up this Friday.  On one hand, it is such a relief to know that the treatment is working, but it’s impossible to look forward to the fact that I’ll be feeling like Puppy Poop in a few days.

Yesterday Mr. T and I spent almost two hours consulting with an immunologist to whom we had been referred by Dr. Forton.  He gave us a presentation on the importance of the immune system in cancer patients, as determined by longevity, and the deleterious effects of such factors as the chemotherapy itself, as well as nutritional deficiencies (in particular zinc, selenium, iron, and Vitamins A, B6, B12, C, D, E and folic acid). He went on to describe the action of various medications whose “side effects” act as immune system boosters.  All claims that he offered were backed up with documentation of clinical trials. 

He then prescribed an extensive blood analysis to determine my base levels for the above-mentioned minerals and vitamins among other things.  I felt an immense satisfaction since this was the first time in my life that a doctor seemed to be pre-occupied by nutrition and its effects on disease, or more accurately on combating disease by enforcing the immune system.   We headed home with my prescription for the various medications, and the vitamin and mineral supplements he had mentioned.  I was walking on air when we left because I felt like I had just added a new card to my deck of solutions.

On the way home, we stopped at a traffic light right across from the local Apple store.  He looked at me and said “Do you want a Mac?  After all, it’s Valentine’s Day.”  A fine example of what he does best -- Techno-love – and an offer I couldn’t refuse.  He had obviously already done his homework on the subject, so we were in and out in about 25 minutes with my new Mac on order and a sack full of gadgets. 

Now I'm walking on MacAir!

To Hell and Back on a Sofa

I had my third chemo session, last Wednesday (Jan. 26), and was being particularly attentive to my reaction on a day-by-
day basis afterwards.  We had reservations for a ski holiday, the departure scheduled four days after the next chemo (Feb. 15), so Mr. T and I devised a plan wherein I would judge how I was doing after this treatment in order to determine if we would maintain the reservation or cancel it.  Our plans were to repeat our experience of last year, when we took Charlotte skiing on an off-holiday week.  Since she is not yet in grade school she can occasionally skip school. This year's reservations also corresponded with Émilie's school ski trip, 'classe de neige', so that both girls would have chance to ski.  It was out of the question for me to get on skis, but at least Mr. T could sign up for a class and we could "get away from it all".  
So Day 4 rolls around and it's not looking so good.  Judging based on my personal scale --  Just Fine, Fair to Middlin', So-So, Like Shit, Like Hammered Dog Shit -- I was feeling Like Shit.  But I kept trying to rationalize and force the outcome:  "You just have to sit on a train.  It's only 5 hours.  We could take a taxi instead of a bus when we get there.  etc."  How I feel is determined to a large extent by the strength that I have in my legs.  When I stand up I can determine if I have a strong support or if I'm wobbly or even worse, trembling.  Day 5 comes and I save up by strength all day since we have a cinema date with a friend in the evening.  I manage that, but am exhausted by the time I get home.  Comparing a ten-minute drive to the cinema to the five hour+ train ride in the same condition, I slowly started to face reality, but was still hoping for a miraculous improvement the next morning.
Day 6 sees me feeling like Hammered Dog Shit as soon as I wake up, so I take a paracetamol and after breakfast I immediately head for the living room sofa. The persistent, nagging pain centered in my lower abdomen has not been touched and shows no sign of slacking.  I call Dr. Forton, who prepares a prescription for a pain blocker, and Mr. T., coffee cup in hand, abandons his plans for a calm morning at work and dons his cross-town courrier uniform to fetch the prescription and then go to the pharmacy.   Meanwhile, all I can do is wait.
I realize that according to what Dr. D had told me, the pain is really a good sign.  It's related to the necrosis of the tumeurs, and that the smaller in volume the tumeurs become, the more readily the chemo molecules can penetrate into them and attack them even more.  I entertain images from the Wizard of Oz of the Wicked Witch of the West, agonizingly crying "I'm melting, I'm melting!" after Dorothy (played by Dr. Delvaleriola) douses her with a bucket of Taxol/carboplatin. Fine, but what about evacuating that smouldering lump of black goo that remains behind, the obvious source of my pain?   I'm praying for some kind of out-of-body experience, for some Cosmic Gendarme to come along and say "Would you please step out of the vehicle, ma'aam?" "Yes, Officer, I'd love to but there are no handles on the door!".  Just relax and breathe, relax and breathe.
Mr. T returns with the goods and I let the first tablet melt under my tongue.  The notice assures me that the effects will occur in 30 minutes and will last for 6 hours.  I mechanically eat my lunch and then drag myself up to bed where the rest of the day, evening and night are all melded into one long haze of sleeping, relaxing, breathing, waiting for this, too, to pass but wondering if it isn't going to take me along with it on the way.
The next morning, the cards on the table.  If this could happen again the next time, the thought of even leaving the house is beyond me.  The ski vacation is quickly cancelled, but the bitterness of the decision lingers on as an aftertaste for days.  I'm relieved to have finally decided but incredibly disappointed that I have to abandon our trip with Charlotte.  I am forced to admit that I'm not in control of how my body reacts and consequently life, for the moment, is not as per usual and can't be planned weeks in advance.  At the same time, I realize that no one else can decide what's best for me, that I'm the only one living in this body, and my first concern above all else is to take care of myself.
One of the amazing features of the human body is that we have no memory for pain.  We can remember that we were or have been in pain, but we can't recall the exact sensation.    So once the major discomfort was dealt with, then all of a sudden the minor ones lined up to start whining for attention.  "What about us?" moans Tingling Hands and Feet?" "No, I'm next!", pleads Pounding Heart!"  "Poor us", laments Tired Legs.  Pfff. No wonder people say that when you've got your health you've got everything. 
Fortunately, when I woke up this morning, I felt Just Fine.