It’s not the end of the world

Mr. T and I showed up for my appointment with Dr. D, my oncologist, on December 5^th for the results of my MRI and PET scan that I had had previously. The results were neither good nor bad:  essentially there had been no change in either the size of the tumors or their metabolic activity since the last series of exams.  Dr D. immediately explained the options for the next treatments that she could offer me.  She always seems to have several cards up her sleeve that she only pulls out as needed.

She mentioned two avenues of treatment, the first being the molecule “Caelyx” which is the treatment that we had tried to obtain back in March to be used in conjunction with the Yondelis.  Unfortunately, it had been out of production for some time and no supplies were available.  It seems that in the interim, small batches were once again being produced but there was no guarantee that she could obtain enough for a complete treatment cycle. 

The second approach was to sign me up for a clinical trial that will be starting in about three months.  This trial combines two known chemotherapy molecules with an adjuvant, a PARP inhibitor.  PARP is a protein that aids in DNA repair.  Thus a PARP inhibitor prevents the repair of DNA leading to cell death that is exactly what we want for those nasty cancer cells.

“Drugs that inhibit PARP1 cause multiple double strand breaks to form in this way, and in tumors with BRCA1, BRCA2 or PALB2 ^[6] mutations these double strand breaks cannot be efficiently repaired, leading to the death of the cells. Normal cells that don't replicate their DNA as often as cancer cells, and that lacks any mutated BRCA1 or BRCA2 still have homologous repair operating, which allows them to survive the inhibition of PARP.”

I was very excited about this news since I had read how effective the Caelyx could be and was also interested in participating in the clinical trial that is supposed to be targeted for cancers of genetic origin, such as mutations in the BRCA-1 and BRCA-2 genes.

In October, we had met with the geneticist at Bordet who had done a family medical tree and agreed that I needed to be tested for BRCA-1 and BRCA-2 mutations.  These mutations results in significant risk of increase of both breast cancer and ovarian cancer.  Since the DNA testing is expensive and time –consuming, we are still waiting for the exact results.  The results of these tests will be significant not only for me in terms of the type of treatments that I may receive, but for my family members, daughter, grand-daughters, aunts, cousins, etc. since these mutations are dominant.  If you have them, then you pass them on and they will be expressed.

We agreed with Dr. D that if she could locate enough of the Caelyx, then I would start the treatment on the following Tuesday (the 11^th) and if not, then on the 18^th.  I felt so relieved that not only did I not have to have a chemo treatment that day, but that I had a good chance of going to Brittany the following week to help out Alec and Virginie on their house renovation project.  I had really been looking forward to that and since I had not a treatment for three weeks, I was in fine form. 

Unfortunately, Dr. D contacted me on the following Monday to say that she had not been able to find a sufficient stock of the Caelyx, and that she would have to start me on another drug while waiting for the clinical trial to start.  Every molecule that she proposes has been shown to be effective against ovarian cancer, but the reaction to the molecule is very individual.  She can never know if a particular drug will be effective for me.  One of my main preoccupations is knowing what the side effects can be.  The substitute she proposed definitely causes hair loss, which I have managed to avoid with all of the treatments since my relapse.  I just couldn’t bear to think of going through that again, and could just picture myself having to explain this to Charlotte again.

So I left for Brittany, with a heavy heart and a ray of hope since Dr. D said that she would call me if she did manage to find the Caelyx.

I threw myself into the renovation project with Alec, while Martine, Virginie’s mom, performed her domestic miracles, cleaning, organizing, shopping, and best of all, cooking.  She keeps us all going being the force behind the machine.  Virginie is so great with child (Baby Girl is expected on December 26^th) that she must take it easy. I whitewashed and painted walls AND ceiling, no small affair, and cut up firewood with their newly acquired chainsaw, an excellent exercise for staying in the present.  Lo and behold, Dr. D called me on Thursday to inform me that she had indeed found enough Caelyx for 4 cures!  I really had something to look forward to upon my return.

Side effects for the Caelyx are typical for many chemo drugs: nausea, vomiting, fatigue, chance of hair thinning or loss (but not guaranteed as some of the others), and the peculiar “hand-foot syndrome” resulting in a rash on the palms of the hands and feet that can be painful even to the point skin loss. 

I had my chemo this past Tuesday and am vigilant to see if any of the symptoms arise.  Mr. T and I went to the movies last night and then to our regular post-cinema restaurant.  I only managed a few bites of my meal and then felt the need to go outside for some oxygen.  I ended up by vomiting in the gutter, dashing home in a taxi and then having diarrhea.  Was this the result of the Caelyx or just a simple stomach bug?  Impossible to say since I feel fine today.

One thing is certain, it was not the end of the world !

Don’t Wait to Say It

Last Tuesday Mr. T and I met with Dr. DV for my check-up before my chemo.  She looked over my blood work and saw that all of the various elements (white cells, red cells, allergens, etc.) were all excellent.  She started taking notes in my file and remarked that this would be my 7^th treatment, and then she added that no patient so far had had seven consecutive treatments at the rate of every two weeks without a reprieve.  I felt as if I had received an A+ on a final exam.  I’ve always been a sucker for good results.  We scheduled the next series of treatments with an MRI in a few weeks to keep an eye on the interaction between the chemo cocktail and the cancer.

Concerning the side effects I told her that I felt that there was some cumulative effect to the treatment since initially it took me about 3 days to feel “normal” whereas now it takes me almost a week.  Apart from the curious sensitivity to cold which means that I’m more comfortable eating warm food for the first few days after the treatment and must sleep in a warm room, my main discomfort comes from digestive problems.  She explained that this is almost exclusively due to the anti-nausea medication that I receive after the chemo.  Overall the discomfort and the occasional fatigue are so minor compared to what I’ve went through my first year that I can easily accept these minor drawbacks in light of the overall benefit of the treatment.

Following my previous treatment towards the end of September, we organized a really nice family celebration for my 60^th birthday.  I’ve been looking forward to celebrating this one because it was very symbolic for me:  no one in my nuclear family had ever lived to 60.  My dad died of lung cancer at 52; my mom had declared that she didn’t ever want to reach 60 and died of breast cancer at 59; and my brother, refusing to grow old gracefully, committed suicide at 59.  I felt that I had something to prove, that I was not like them, that I had every reason to live and that I love being alive. 

What better way to celebrate my birthday than to be surrounded by folks that I love?  (Of course, there are the presents.) The highlight of my day was the picture that we took with me and my granddaughters, Émilie, Charlotte, Lola and the newest arrival, Alma.  Émilie held Élodie’s picture as her placeholder since she had returned to Austin. (We’ve had several Skype sessions with her since her return and she immediately recognizes us.  She’s  tried to hug the computer and gives us kisses on the screen.)

One of my favorite gifts was a one week trip of “camping à la ferme” in Brittany.  I returned with Alec and Virginie to Bovenant to lend a hand on their farmhouse renovation.   Virginie is now “great with child” as the old expression goes and is therefore limited physically.  Fortunately, the weather was still warm enough, except for one night when the temperature dropped to about 3 degrees C.  That night I woke up having trouble breathing since my throat was constricted because of the cold, so the warnings from my oncologist about the sensitivity to cold is not something to be taken lightly.  We were able to get quite a bit done that week.  Alec proposed that he reserve any handling of carcinogenic materials to me.  “Well, she’s already got cancer, so why not?” he quips.  In fact, they are being very careful about using only eco-friendly building materials, so I was not forced to put up any asbestos siding.

I thoroughly enjoyed spending time with them, and I get such satisfaction out of helping out, but it is a real exercise for me to let them work out their own problems without me interfering.  I’m sure that I don’t always succeed but I do try, and that’s really all I can do is try, try again.  It’s all about perception.  I see myself as staying out of it while Alec teases me about micro managing.  Probably the “truth”, if such a thing exists, is somewhere in between.

That’s the interesting thing about us humans.  We’re such social creatures.  One of the advantages, or is it a function, of living with others is that we can act as mirrors for each other, letting us know when we’ve gone too far in words or actions, or if we haven’t gone far enough.  The key to that mirroring is honest communication that seems so difficult for adults to achieve.  It is so natural for kids to say what they mean.  Charlotte can easily come out with a heart felt “Mamie Lee, je t’aime jusqu’aux étoiles!” or Lola “Tu es méchante !” on those rare occasions when I don’t go along with her.  (Don’t worry, Lola loves her Mamie Lee, too.) 

We teach them the magic words of “Bonjour”, “Merci”, “S’il te plait”, “Au revoir”, “Désolé”.  The basics. If we teach them the basics, then why is it so hard for us to say “I’m sorry”? And there are so many other magic words: “I accept your apology”, “No, I can’t”, “I’m so happy to have you in my life”, “I miss you”, or the more difficult, “I’m so scared of what your cancer implies for me.”

I thought about this again when I attended Mr T’s mother’s funeral the following week; Bonne Maman to most of the family.  There were so many moving eulogies during the ceremony that captured the essence of what Bonne Maman meant to her sons, her colleagues, her grandchildren.  I wondered why we wait until people are no longer there to tell them what we really feel about them, how much they’ve influenced us, how much we love them.  The paradox of funerals: the person who would benefit most from what’s being said is no longer there.

The Envelope, Please

“Bonnes nouvelles” says Dr. D.  The results of the PET scan show a significant reduction in the metabolic activity of the various tumors and nodules, some of them have even gone completely quiet.  The IRM shows that there has been only a slight decrease in the actual size of the sites meaning that we’re making progress but still have more to do.  She’s signed me up for four more treatments and I’m very willing to go along with that since I have so few side effects.

I just got home from the hospital and am now resting.  Although nothing much really happens at the hospital: blood test, lunch in the cafeteria, appointment with the oncologist, chemo at the day hospital, visit with the psychologist during the chemo – it makes for a full day and I’m usually just tired out afterwards.

Mr. T and I are becoming old hands at this, but even he admitted that it had been a good day.

I heartily agree!

How I Spent My Summer Vacation

When I was in grammar school, the first exercise when we came back to school was to write an essay on what we had done over the holidays.   I thought this would be an excellent way to get back to the blog.

I started the new Folfox treatment mid-July and was very relieved that I had very few side effects.  The treatment consists of having a drip at the day clinic of the hospital and then coming home with medicine pump hooked into my “port-à-cath” (central line) that I leave in for 2 days.  The treatment is on a Tuesday and I guess I feel a bit puny until about Saturday.  I just drink lots of water, make sure I take a nap after lunch, and take it easy as evening comes on.  Until the next treatment (every 2 weeks), no one would notice that I’m sick.  In fact, I’m not “sick”; I’m actually a very healthy person who happens to have cancer.

Since I had so few side effects I was able to really enjoy my summer and all of my favorite activities, such as gardening, sewing, reading and spending time with our ever-increasing flock of grand-daughters.

Since my treatments were so frequent, Mr. T and I were not able to leave for a couple of weeks on vacation as we usually do.  We were able to spend a fantastic week, camping out in Brittany at Alec and Virginie’s newly acquired old farmhouse.  The weather was beautiful as only summers in France can be – warm, sunny days and calm, balmy nights.  We had a great family holiday since Virginie’s sister, Sandra, and her family was there.  Everyone pitched in to get the farmhouse in a livable state before winter comes and their new baby girl who is due for Christmas.  Mr. T and Alec worked on re-roofing the house, which was quite a formidable task – removing the old slate tiles, reconstructing the framework, laying out the insulation, etc. in preparation for the professional roofers who put on the new slate.

Back from Brittany, we then had two weeks with our grand-daughters at our place in France.  First of all, one week with Lola, who is 3.  It was her first week alone with us and we all had a great time.   At three, she in very much into her imaginary world, organizing her dolls and stuffed animals, talking to them, cooking for them on her toy stove.    I must agree with Philou’s (her dad) observation:  “Le rire de Lola est le meilleur médicament au monde.”

The following week, we had Émilie (now 11) and her sister, Charlotte (7).  We organized a pottery workshop and invited a few girls from the village to join us.  Mr. T was in charge when I had to return to Brussels on Tuesday for my treatment.  He managed the morning workshop like a real pro.  Although there was a lot of organizing involved, the workshop was actually very easy since the girls were very excited about working with the clay, and very supportive of each other’s creative attempts.  Mr. T dug a pit in the back garden and we fired all of their wares towards the end of the week.  It was a real magical moment unearthing the wares from the ashes to see the results. 

When I came back from Brussels, of course Charlotte saw all of my “plumbing”.  She has always been intrigued by all things medical, so I explained to her how the medicine diffused through the pump into my vein and how the tennis-ball sized container would gradually get smaller over the next two days.  I decided that now was the time to stop referring to my condition as “lumps in my stomach” and switch over to the appropriate vocabulary.  “And that’s how we are treating my cancer…”  Charlotte looked at me and said “Mamie Lee, tu as un cancer?! Mais le cancer c’est mourant!”  (Mamie Lee, you’ve got cancer?! But cancer is deadful! – or something to that effect.)  “Yes, it can be, but so far I’m very much alive and that’s why I follow my treatment so that I can stay that way.”  End of discussion as she seemed reassured.

Having said that to her, I realized how much my attitude had changed towards my disease over the course of the last few months.  During the previous treatment, I was so anxious and pre-occupied by whether or not it was working that I couldn’t detach at all from the fact that I have cancer.  Since I’ve started the new treatment, even though I haven’t had any feedback yet about how efficient it is, I feel more in tune with my reality.  Perhaps one major factor is that I don’t have any more pains and strange tweakings that constantly remind me that something is awry. I realized that today cancer is not something that you die of; it’s something that you live with.

Spending time with our granddaughters is one of the best ways that I have found to “stay in the moment”.  If I can get down to their level then I can see the world through their eyes whether it’s harvesting potatoes with as much enthusiasm as if we were digging for gold, or having a water fight in our tiny summertime pool, or being awed by the color and movement of the gold fish when they come up to feed, or the incredibly sensual satisfaction of holding a still warm egg in the palm of your hand. Of course, the younger they are the more carefree they are.  So spending time with Élodie or Lola is very much “here and now”, whereas with Émilie and Charlotte we sometimes find ourselves fielding questions with depth, breadth, and consequences.

If I’ve learned anything this summer, it’s been that having cancer does not give you a “Get out of jail free” card.  Life still goes on around us with all of its hassles and pitfalls, major or minor:  personal conflicts, aging parents, other health problems (chemotherapy has done nothing for my carpal tunnel syndrome), broken-down appliances, etc. Shit happens and as Randy Newman says, “You gotta roll with the punches.”

So I’ve had four sessions of my new treatment and this week I had a PET scan and an RMI.  Next week I meet with my oncologist to get the test results and find out how effective the treatment really is.  I’ve been waiting all summer for this, but lately the waiting has become just background process and not a source of anxiety as it was this spring.  Maybe it’s a premonition that it’s working, maybe it’s just me learning to take things as they come, or maybe it’s a bit of both.

Tune in next week for those test results.  ;-)

So much for sea squirts

Mr. T and I have been waiting since early May to see how the cancer would react to the new molecule

All along I’ve been expecting the worst since I can feel that something is not right in my body.  I have pain -- should I use the word discomfort? -- in various places where the tumors, or in some cases, enlarged lymph nodes, are located.  At least two of them (~ 4 cm. x 3 cm.) are attached to the muscle wall of my abdomen and I can feel it when I walk or reach or bend over.  So when these anomalies “talk” to me, they are constantly whispering that something is not right.  There is not a waking moment when I’m not aware that I have cancer.  I try to rationalize based on the experience of the first chemo when I felt some pain as the tumors were melting.  But this is different, it’s just a constant nagging reminder that the cancer is still there, digging in, taking root, getting comfortable.

The anxiety of suspecting what’s going on, but not KNOWING, is unbearable.  It literally drives me crazy.  I become obsessed with my body and am constantly palpating my “lumps”.  Bigger? Smaller? Stable?  Dr. D. advises me to not let the pain get established since it’s harder to control so I take paracetamol & codeine throughout the day and before going to bed.  Mr. T observes all of this from the corner of his eye and doesn’t say much, but he doesn’t miss a trick and tries to keep me on an even keel.

Having Élodie here with us provides an excellent diversion.  I try and spend as much time with her as possible.  She is just learning to walk and is learning baby sign language and it is just fascinating watching her discovery the world around her.  She obviously loves her “Mamie Lee” and that provides me with immense joy.  I feel a huge sense of urgency being with her since I don’t know when I’ll see her again or for how long.  However, even that which provides comfort can also cause tension, and I realize that I am so bent on being with her as much as possible that I’m exhausted at the end of the day.

I’ve had three treatments with the new molecule, the last one on June 19^th, followed by a PET scan on the 20^th and an MRI on the 21st.  We have to wait two weeks, 16 days to be exact, to get the results of the exams. 

Dr. D. tells us “I’m not going to beat around the bush – the cancer is not responding to the treatment”.  I’m actually relieved to hear what’s going on, rather than remaining in the dark another instant. She then explains the next tactical move:  I’m to be enrolled in an ongoing study of the effects of the “Folfox” cocktail on recurrent ovarian cancer.   One of the molecules in this combination is oxaliplatin, a variant to the carboplatin used in my first treatment.  One again I allow my hopes to rise.

There is a difference in the treatment regime:  it occurs every two weeks, instead of three, and I spend one day in the day hospital receiving one of the molecules by drip and then I go home with a pump attached to my port-a-cath which dispenses the other molecules over a 48-hour period.  I must return to the hospital to have the pump removed.  We have to completely rework the dates in the agenda to accommodate this new rhythm, reminding me that my life really revolves around the disease.  The first treatment is to start the following Tuesday (July 10^th).

In the meantime, I take my test results to my general practitioner who carefully reviews the reports.  I explain to him that what I’m missing is the “big picture”.  If I talk to the oncologist, she can tell me about chemotherapy; the surgeon can talk about surgery; the immunologist about the immune system, etc.  But no one can give me a synthesis about how all of these parts could or should fit together.  I feel like I’m in a quest for THE best solution and I don’t have the knowledge, with only a bachelor’s in biology, to figure out how all of the puzzle pieces fit together.  Furthermore, I feel like my life depends on finding and doing the right thing.  He looked at me and said “Personne au monde can tell you what is really happening or what is the best thing to do.”  In some way, I’m relieved to be told that there is no ONE solution. 

On Tuesday, I show up at the hospital for my blood work and to have the port-a-cath “opened” in preparation for the treatment.  When I get to the day hospital, they inform me that I can’t have the treatment since my white blood cell count is too low.  I feel so angry and frustrated.  I’m almost home when the hospital calls and tells me to come back since I left before they closed the port-a-cath. Mr. T realizes that I’m coming home and I’m furious.  He is incredible.  He greets me at the door, hugs me, comforts me, puts on a DVD of a Norah Jones concert until I calm down a bit and then we go out to lunch together.  He then drives me to the hospital and waits while they close the port-a-cath.This never would have happened a year ago and I am so grateful for his patience, his presence, and his cool-headedness in the face of adversity.

I love you, Mr. T.