After surgery, I was to have radiotherapy. My doctor, having spent countless hours trying to talk, encourage, coerce, drag or scare me into any treatment at all, began to softly explain that I didn’t absolutely have to have the radiotherapy as the illness should be gone, but as research showed it would improve my chances and it was an extra safety measure, he would recommend it. He sat back, surprised and pleased when I stopped him to say of course I would have the radiotherapy. “You are a different Lucie” he said. “I’m already defeated” I said.
So the radiotherapy was to be twenty five sessions, one a day over six weeks, most week days with weekends off to recover. The total dose was 50 gray and I was to have 2 gray per day. I was given a couple of weeks to recover a little from the surgery and then have the radiotherapy. The clinic was five minutes walk from my appartment and I had no idea it was there. All the years I had lived a lovely happy carefree life a few minutes away, people were coming there for treatment, from sunrise to sunset. I went in for a CT scan first so they could map my body and target the dose precisely and evenly. A pretty nurse gave me three tiny dot tattoos on my hips, that would be used to line up with beams from the machine everyday. The doctor told me there would be quite severe side effects from the treatment, especially as it progressed, but that I should recover completely from it and “forget I ever had it”. He told me about a patient he had who was a ballet dance teacher, she had gone to classes in the afternoon after treatment in the morning. Or at least that’s what I heard, later he said he told me she went back to teaching, he meant after all of it, not every day. The ballet teacher who went to class in the afternoon would have me confounded with in a few days.
So about six weeks after the surgery I was deemed strong enough to be beaten down again and the radiotherapy began. The logistics of radiotherapy are easy when you are a day patient who walks in and out. I was a different Lucie by this point, I was managing to sleep a little. I got up every day, walked to the clinic, waited maybe five or ten minutes at most, went into the treatment room, lay on the table, the nurses would leave the room to hide behind several feet of lead, then red beams from the wall would match up with my tiny tattoos and the machine would move around me, above, below, left, right. It took a few minutes and was painless. Nothing touched me. Then I said “Merci, A demain” and got out of there, the whole thing taking only about twenty minutes. In the waiting room though I saw that not everyone was getting through this stage of their treatment so lightly. Some waited connected to IVs of drugs. Some arrived on beds from the hospital looking very unwell. Some had very short hair, just beginning to grow back. Whilst I had been through and was still going through a very difficult and painful loss as a result of the illness, it seemed that for me this part of the treatment would be the easy time, but not everyone there was as fortunate. I was the youngest by far.
After one day, I felt mostly the same. As bad as I was feeling in general after surgery and stress and weight loss, but not notably worse. After two days, I felt mostly the same again. On the third day I went for a run round the park, not graceful or strong, but I put on my shoes and ran round the park. The nurse raised her eyebrows in surprise when I told her this the next day, when I met with the nurse and doctor to note weekly progress. I thought of the ballet teacher and figured it wasn’t going to be so bad. A bit of tiredness and a bit of an upset stomach, nothing more.
After day three I found that my stomach was beginning to get upset and I was feeling sick, and when I walked I had to hold onto railings for balance and to stop me falling over. By day four I found that my feet weren’t moving forward when I tried to walk and my stomach was very unhappy. By day five, if I didn’t know any better, I would have thought I was dying, or quite possibly already dead. I was so, so sick, violently sick, all, day, long. My insides burned, I had stabbing pains and cramps. My trips between bed and the bathroom to be sick were so frequent that it stopped being worth the effort of the few steps back into bed. I took my duvet and wrapped myself up in it on the bathroom floor instead. I also was quickly becoming absolutely, completely exhausted. The exhaustion caused by radiotherapy is sometimes described by the word tiredness, but really, its nothing like that. I was so completely knackered that I couldn’t stand up, I was too exhausted to move, to listen even to think. All I did was throw up what felt like liquid fire and when I wasn’t throwing it up the liquid fire it was finding another way out. When friends came to visit, all I could talk about was throwing up and diahorrea. I was permanently taken aback by how severe it was, it was all I could talk about. “How are you Lucie?” “Diahorrea!” “Do you want to eat?” “No, diahorrea!!” “What have you been up to Lucie” “Diahorrea! All day!!” Ocasionally the unshockable and unshakable Alessandro would take me for a gentle walk around the park. One lap at a slow pace. We laughed when old ladies over took me and at the thought of me running laps only days before, talking of a ballet dancer who was obviously wearing a lead tutu to her treatment.
Alessandro, along with a few other people, were my heroes during this time. Now that my boyfriend had disappeared, my friends stepped in. Ale came to my house every evening, all the way across town, taking his motorbike to work rather than his car so he could make the journey more quickly. Ellie came by with pre made cups of tea most evenings. My brother called me every single day when he got home from work and we spoke for an hour. My Dad called me every evening and we spoke for at least an hour. A couple of other friends who I hadn’t seen for maybe six months started stopping by occasionally, bringing tea, taking out the rubbish that I could not lift or mopping the floor that I was too exhausted to clean.
So the treatment continued with much a sameness, it was brutal and I was very ill. But I did get to go home in between treatment and be in my own apartment rather than anywhere else, to lie on my bathroom floor wrapped in my own duvet. After three weeks, my doctor decided that my side effects were so severe that the treatment had to pause for me to recover. I had lost even more weight despite my efforts to eat. Trust me, it takes a very brave girl to take two gray of radiation to her pelvis and stop by the boulongerie on the now twenty five minute shuffle home, but I did try. Inevitably though, my already tiny frame dropped more kilos, so the treatment stopped for a week. I was disappointed as I was counting down the sessions, but I was very, very sick, so I took his advise. “You are a new Lucie” he said. “You told me the bloody ballet dancer was teaching class in the afternoons after her treatment” I said. “Ah no, she went back months after. I stopped her treatment too” he replied. “Have a rest, come back next week”.
The amazing thing about radiotherapy, alongside the fact that it can be invisible yet make you so violently, painfully, exhaustingly, explosively ill, is how quickly the effects wear off when it stops. By the end of the week, whilst I was still very unwell, relatively speaking, I felt almost unbelievable better. It was encouraging to know how quickly the severe effects could wear off.
So I went back to treatment. I threw up, I had diahorrea almost exclusively whilst awake, the logisitics were a challenge now and again, but I managed. I still talked about nothing but diahorrea. Guests in my appartment, callers on the phone, diahorrea. Alessandro began a campaign to have me eat more and began preparing food justa lika Mamma makes in tiny portions for me to eat. The first evening we ate together, rice and chicken, I had a non spiced, non flavoured, tiny piece of chicken with a spoonful of rice, which I didnt finish, whist my friends had the regular version. That evening I was up literally all night, throwing up more violently than ever before. Ellie and I laughed and teased Ale for his Italian cooking, but we were to learn that the Italians take their cooking very seriously, especially when its one of Mama’s recipes. I wanted to ask how it counted as a recipe when it was plain chicken and plain rice, but I was in the bathroom throwing up, so had to let it go. Alessandro sulks to this day when reminded of the meal than made me throw up for a whole night. In truth, although I laughed about it later, I did spend most of the night in tears. The sickness was so violent and so repetitive and so out of my control that I really did feel like a patient of the illness, which was not normally how I saw myself. In fact I think that was the only time I felt that was what I had been reduced to and nothing more. I never told Ale the way I felt that night.
But it passed, like all things do, and within a day or so I was back to talking endlessly about diahorrea.The break did help and although I did get very ill again, it never quite got to the extremes it had when the break was ordered. I was sick and exhausted, but I was counting down at last. Although the battle was by no means over, it would be good not to be so dramatically sick and exhausted for any longer.
A survivor is a triumphant person who lives with, after, or in spite of a diagnosis or traumatic event. Survivors refuse to assume the identity of their adversity. They are not imprisoned by the constructs of a label. Instead, survivors use their brush with mortality as a catalyst for creating a better self. We transform our experience in order to further evolve spiritually, emotionally, physically, and mentally. Our reality challenges us to go deeper.
Survivors cultivate an essence that will never be victim to a word.
– Kris Carr, inspired by Beth Villandry
In July 1978, less than two years before my birth, the first baby conceived by IVF, in vitro fertilization was born. Louise was born in England. More than three million children have been born using IVF in the years following. Six years later, the first baby was born having been conceived using IVF with an embryo that had been frozen. The embryo became a baby girl named Zoe, born in April 1984 in Melbourne. The same year in Australia a child was born with the participation of two woman, one provide an egg as a donor and the other carrying the child in her womb. More than three million children have been born in developed countries using IVF in the years following.
Cryopreservation, where cells or tissue are frozen to subzero temperatures to a point where all biological activity is paused, plays a central role in modern IVF procedures. Oocytes, or eggs from a woman, can now be frozen, as well as embryos and sperm. Oocytes are more difficult to freeze and thaw due to the large amount of fluid in the oocyte cell. When fluid is frozen, it can expand, causing damage to the egg. A method of freezing where ooctytes are flash frozen using liquid nitrogen, vitrification, has been developed in recent years, to allow cryopreservation of a ooctytes to be a feasible part of the IVF process.
Oocyte vitrification has become a new method for fertility preservation in young woman who may no longer have a plentiful supply of eggs when she plans to have a family. The method is newer than freezing of embryos, which has been shown to have comparable success rates to fresh embryos, but emerging results are encouraging. The first baby conceived using a frozen egg was born in 2002 and since then the technique is emerging as a means of hope for young woman who may see their fertility compromised by necessary treatment or early menopause. Early studies have demonstrated that frozen eggs may result in a pregnancy rate equal to that using a frozen egg.
At last, some good news.
In March 2008, I was advised to have radiotherapy in addition to surgery as part of my treatment, to improve my chances of recovery. Radiotherapy to the pelvis will, without intervention, cause a woman’s ovaries to be damaged beyond recovery, so that she will both start early menopause and no longer produce eggs viable for a pregnancy, surrogate or otherwise. As a result, a select few specialist fertility surgeons are now are able move ovaries prior to pelvic radiotherapy, out of the intended field of radiation. Initially this was an attempt to avoid early menopause, but has the happy side effect that a woman may well continue to produce eggs, which can then be collected using an IVF procedure, to conceive a child.
Prior to this, I had read of egg freezing in news stories, but only in the hypothetical context of a healthy woman choosing to freeze eggs then pursue a career and adventurous life before having children later in life, after her natural fertility had reduced. I had no idea that freezing of eggs could offer a lifeline, literally a lifeline, to young girls diagnosed with life changing fertility relevant conditions. I was soon to become one of those girls.
My doctor told me that egg preservation was not necessary for me, as we would move my ovaries and therefore I would remain fertile and could just do an IVF cycle when I wanted to have a family, putting the embryos in a surrogate. This is true, but given the amount of absurd and unlucky things that had happened in the weeks prior, I was not soothed by this promise. As always, this path was not certain or guaranteed, just likely, and given the masses of bad news and luck I had felt in the preceeding weeks and months, I was not confident of landing on the most likely side of the line. My doctor happily referred me to a fertility specialist, in one of is many valiant and generous attempts to get me willingly agree to treatment. I saw the fertility specialist, a private doctor, the same day, while most cases wait three months to see him. As was to happen often in this time, I was the interesting case, a young girl, an unusual patient. I resented this as it just reminded me how extra unlucky I was to be the unusual one in statistics that said my case should not happen often, but it is true looking back that this very fact allowed me good access to medical professionals, personally interested in me and my case. Anyway, I went to see the Fertility doctor, he said sure lets freeze some eggs but maybe I should freeze them somewhere else, have I ever been to the USA, sure he’ll move my ovaries and while he’s at it he can freeze some ovarian tissue, just because he can. What, now?
Well, I would be freezing eggs with the intention of using a surrogate. Surrogacy is more common in the US than France and Switzerland where we were based, therefore we had to decide where to freeze them. IVF has to be timed with a natural cycle and can only be started on one or two days a month. We would have to wait for the appropriate day, so a delay of up to a month was possible. Usually this is no problem, but in the case where the IVF is being done for fertility preservation before urgent treatment, a delay is not good. I was very fortunate that the illness I has was considered slow enough developing, so that it was reasonably safe to consider a delay by some weeks. In some similar illnesses there is not a day to wait and no time for any preservation of ooctytes or embryos, or hormone treatment of IVF is likely to fuel the illness so cannot be used. For me however, a short delay and hormone treatment was a safe possibility. We did a blood test and realised that we could start a cycle that very day. There was less than ten percent chance this would have been the case. At last the statistics and my tendancy to be in the unusual case was starting to work in my favor.
My mind was already blown to new realms of normalcy and my doctor was finding this all very interesting and not in an average days work, so we planned an international cross continental IVF cycle. I would have the first part of the cycle with him in Europe, once the eggs were almost ready to be collected I would jump a plane to San Francisco, have them collected and frozen there. My doctor in Europe had contacts at a fertility clinic in San Francisco and was able to coordinate the efforts. The doctors in the US clinic were, for the record, amazing. They were flexible, positive and willing to work with me in this way. I had spent the last seven years talking about easygoing, smart and kind California life and my descriptions were coming to life now.
So I embarked on an IVF cycle. I have read descriptions of IVf as being difficult, stressful, uncomfortable, almost unbearable, but in truth, I found it easy. I had a hormone injection every day for about a month, the drugs come in syringes which I kept in my fridge where the food had previously been, I did the injections myself and really, its a tiny needle. Yes I felt it, yes it left some fairly impressive bruises, but with a little perspective, it was not painful or difficult. For the last couple of weeks I had a blood test every second day, which again is not a big deal once you get used to it, it was quite nice to get out for a walk really and if anything it encouraged me to eat and drink a little once I realised that my blood wasn’t going out of me if I was dehydrated. So we monitored the development of the follicles containing eggs using my hormone levels and a couple of ultrasounds, then once we anticipated they would be ready for collection within a week, I booked a flight to San Francisco for the retrieval.
My hosts and friends in San Francisco, Bryan and Whitney, and Bryan’s sister Tiffany who arranged for me to stay with them, deserve a story of their own. For here I’ll stick to the story of snow.
So, I arrived in San Francisco on a Saturday. I went to the clinic the next morning for blood tests and an ultrasound. My doctor in Europe had monitored the development of a number of possible follicles and eggs. All eggs have to develop at the same pace as there is a small window where an egg can be retrieved and used, but the final stage is prompted by a hormone injection, exactly thirty six hours before retrieval, so all must be collected at once. If an egg is underdeveloped it will not fertilize, if it is over developed it will be spontaneously released before it can be collected, or will not fertilize when collected. The process of IVF is one of monitoring and adjustment, to allow a number of usable eggs to be collected at once. When I arrived in San Francisco I had thought that there was perhaps four or five potential follicles developing in each of my ovaries, as this is what we had seen in the previous weeks in Europe. On the first day I saw a doctor in San Francisco, he ran the tests then told me from what he observed he thought there would be at best four or five eggs, most probably two, possibly none, and that in this case he would advise abandoning the cycle completely when there was no time pressure and careful consideration of whether the financial costs and potential false hope of a very small number of eggs were worth it in a case where time did count. I was devastated. This was a problem I had not anticipated and I had anticipated all the problems in the world it seems and I was just exhaused with things going against me.
I decided to go ahead anyway, as there was no other option except to give in, something I just could not do. My hormone doses were doubled and we carried on, till the retrieval was schedule for the following friday. We did the massive hormone injection thirty six hours before and I went for the retrieval. Bryan came with me and I took my white bear. For the procedure I had a sedative, I think because I was shaky they gave me enough that I don’t remember anything for the half an hour it took. As I came round, Bryan popped his head round the curtain smiling as always. “It’s good news”, he said, “do you want me to tell you?”. “Yes” I answered before he had finished even asking. He answered, in his soft, kind, lovely deep Californian voice, “Nine. You’ve got nine”.
I don’t remember what I said. I know I was elated. I had been desperately hoping for five, the best I had been told to expect. At last, my body and I had got something right. Not only right, we had kicked medical ass. The embryologist came to see me and said I had seven excellent quality eggs and two a little less mature but still very strong valuable.
Now the good news was just raining down like gold.
He gave me a photograph of them taken through a microscope and predicted an eighty percent chance of a pregnancy with them. As he drew his finger around the circles he said with a smile, “You could very well be looking at your future children there”.
As we left the clinic Bryan suggested a drive around San Francisco. I asked for the Golden Gate Bridge and made him drive us across one of my favourites places in the world on that beautiful sunny day twice. Twice for twins.
An invisible red thread connects those you are destined to meet
Regardless of time, place or circumstance
The thread may stretch or tangle
But it will never break
– Ancient Chinese Proverb
The illness came to me in January. It began with a small abnormality, a small number of changing cells most likely, usually go away on their own, easy to treat if we so desire, nothing to worry about. I knew right then, immediately, I just knew. “I’m not having the surgery” I said, not really listening to anything else he was saying. He rocked his head back, leaned back in his chair and laughed, then adopting his serious voice “This will not effect your fertility at all”. He took some cells and some blood, to decide whether he wanted to treat or whether it was so minor we should just leave it to correct itself. “Nine times out of ten we do nothing, there is nothing to worry about”. I already knew.
I left in a daze and went on to work, I remember what I was wearing, dark blue jeans, a light blue sweater. A friend saw me arrive, saw my dazed face and the plaster on my arm from the blood test. “Oh, you are pregnant!” he said. For the first time in my life, I wished that I was.
Two weeks later I went back for the results. It was more serious than the doctor had predicted, high level changes or possibly more, localised and noninvasive. This is still nothing to worry about, we will treat it he told me, with a minor surgery to take away the bad cells. So we did.
Two weeks later I went back. I was slimmer already, without realising it I had already stopped eating. “It’s bad news” he said. I assumed he meant we didn’t remove all the cells and needed to repeat the process to take the remainder, as I had been told this can happen. No, it was not this. The cells had penetrated and were in numbers that no longer suggested our previous worse case scenario. It was invasive. I didn’t understand what this meant at the time, still protesting that another small surgery was all that was needed. I was the unlucky one he said.
No one ever told me, “You have cancer”. But I did. I was 27 years old.
I was sent to see another doctor, this time there was no two week wait and I saw him within days. There is a possibility we can save your womb he said, opening my files. Ah no, he then added almost instantly, we cannot. “Dont even suggest it” I said, interrupted, holding my hand up to gesture to him to stop. I recall asking him how long I had left. “A year, maybe two” he replied. The rest of the appointment is a blur. It was March.
In the next weeks, refusing to believe what I was told and with my life collapsing in around me, I saw endless cancer specialists, some at my request as I desperately searched for another way, some I was sent to by my oncologist, who in my desperate shocked blur I had not fully realised was an oncologist, in attempts to convince me that there was something wrong. I collected all my paperwork meticulously, obsessively, researching new treatments, sending it to specialists and pioneering specialists the world over. The responses were always the same. A genuinely sad no.
The fertility aspects offered some hope, I would remain fertile, just unable to carry. I would use a surrogate, it would be no big deal. After all the bad news I was unable to accept this. I had been told at every step that I had nothing to worry about, then at every step the opposite was true. So I asked if I could do an ivf cycle and freeze some eggs. Sure, but there is no need they said. In truth I needed to do something and I was not willing to do what they asked. I could not go back to my life as it was before, as I was unable to eat, sleep, or focus on anything else.
So I embarked on an ivf cycle. I have heard many complaints about this process, but in truth I found it easy. I had injections everyday, blood tests every second day, scans twice a week. I then flew to California, to meet with a fertility clinic there. The USA has more progressive laws and technology for egg freezing and surrogate use, so I had made the choice to travel there.
I arrived in California with a small white leather handbag holding pyjamas, underwear, syringes, drugs and my teddy bear. I no longer needed anything else material. A friend whom I had met in my sunny days as a student at the University of California had put me in touch with her brother and his young wife, who met me at the airport and took me to their home.
Once I arrived back in Switzerland, I waited two days, then went to hospital. The nurse came to my room and asked if I was ready. I was sobbing already and said No I could not do it, I would not do it. She gave me medication so that I would sleep, telling me I had to do it and that the medication was so strong that I would sleep and would not need to know. I tried to calm down and rest but the sobbing and panic consumed me. I did not feel calm or sleep. The nurse returned and was shocked to find me awake, saying in French that she did not think it was possible. Again, sobbing, I said No, I could not do it, I would not do it. She began to take me, I sobbed, I was shaking, I whimpered, I said No, please, No. The nurses were crying too. When they passed me over to another set of nurses, I grasped the blouse of the nurse who gave me the medication and said “No, Don’t let them take me”. She undid my grasp, I grabbed her with my other hand, she did not look me in the eyes, tears streaming down her face, peeling my hands away from her again and again as I begged her not to let them take me. All the nurses were crying. I remember the sparkle of the diamond earring od the nurse I begged the most desperately, who cried the most tears. Then she was gone.
I was shaking and still sobbing, recoiling from needles and cold hands. No, please. Someone gave me an epidural, I was shaking so much I had to be held still. At the same time there was an IV in my arm. I do not remember the anaesthetic taking effect.
I woke in the post op room. I was wrapped in blankets and wires. I knew immediately. A male nurse came to me as not for the first time, I was sick from morphine. He put his face close to mine so he could hear my tiny voice. Is it done, I whispered. It is done, he said. In the next room a baby was screaming. Is that a baby, I whispered. Yes, born two hours ago, he said. Close the door, I said. Excusez nous Madame, Excusez nous, he said and softly closed the door.
It was the first, and last time, anyone ever said sorry.
Next thing I know I am back in my room, it is dark outside, and I am alone.
I am crying, sobbing, whimpering. My heart is exploding. My primal instincts are ripping me apart fibre by fibre. Despite an epidural, a morphine IV and sedation drugs, I am in terrible pain. I can barely focus my eyes on the outline of the Saleve against the night sky, I see only the blurred blue light from a lookout post high on the mountain. Alone in the dark room, curled up in pain through my body and ripping my soul, under the dark night sky and the blue light on the mountain, one by one, I feel my babies die, that night.
And now, after telling of everything but the illness, after refusing to even say its name, I must tell of all of it.