Sometimes when I go on a trip, images, words, or things seem to repeat themselves. A theme develops.
Sometimes when I go on a trip, images, words, or things seem to repeat themselves. A theme develops.
I have been thinking a lot about cancer lately.
Probably doesn’t help that I am slowly reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, (very good book), and I quickly read The Fault In Our Stars, by John Green, (my daughter wants me to see the movie but I wanted to read the book first).
Or that yesterday I went with my mother-in-law for her check up with her oncologist before she starts her 6th chemo tomorrow. She is doing well, happy that the chemotherapy has not been too difficult.
And, (the main reason), is because we have made appointments for my next scan and visit with my ocular oncologist. I know I was calm and not too worried about my iris nevus, but I seem to have gotten back into the mental “is it/isn’t” it loop.
The uncertainty of not knowing.
However, with all this reading I realized that even if the doctor does tell me it is ocular melanoma, (which can only be confirmed by removing it and performing a biopsy) I will still be living with uncertainty, just different questions; will it come back or has it spread? I talked to my husband about my fears, and he pointed out that many people live with uncertainty. My situation my be rare, but my feelings are not.
I found this comforting. We are social creatures, and feeling alone makes everything worse, but I am not alone. So, I will take a deep breath and focus on the other things in my life…
and there are many!
After taking her entrance exams and applying to several universities, my oldest daughter got into Universidad Católica del Norte to study Law. Some of her friends are going to the same university, which might make the early morning commute on the bus a bit easier. (And I know I am being completely selfish, but I am happy that she is staying close. So is her little sister, who still has 8 years before she goes to university).
I have been very busy at Casa Creatif. Not so much teaching, but administrating and organizing. We have different classes for kids from 10am till 1pm most days of the week.
My youngest goes with me every day, taking as many classes as she can, and even my Dad and my oldest are taking pottery classes. (He actually taught when I was a baby, but this is my oldest’s first time!)
I have been spinning and knitting, testing projects that use small amounts of hand spun.
A little large for me, but fun, and who doesn’t need a funny woolly hat in the middle of summer!
Sometimes I spin or knit with a specific project in mind. Sometimes it is just to pass the time. Recently I have been doing a lot of that while sitting in waiting rooms.
Several months ago I wrote that my mother-in-law was diagnosed with colorectal cancer. She went for radiation therapy in April, which, unfortunately didn’t work. The tumor grew, which was a complete shock; the doctors did not warn us that this could happen.
In May she had the operation to remove the tumor and because of the location, a permanent colostomy was also done. Five days later she was home, and considering the heart problems she had after surgery I believe this was too soon. (But who am I to argue with doctors, oh, and they also failed to show her how to change her colostomy bag).
The surgery she had was major. She had one incision up her stomach, the colostomy, and the incision were they removed her anus. And all of this needed post operative care. For this you either go to the nearest clinic or pay for a nurse to visit you in your house. We paid for a nurse, and my mother-in-law had weekly visits at the hospital with her surgeon to exam her progress. This was a slow and painful process, and an infection in the perineum incision meant she had to go back into hospital.
During this time we also received her biopsy result, not from the doctor but from the report. The cancer was in her lymph nodes, stage III. I understood this, but I am not sure my mother-in-law did, and our visit with her surgeon to discuss the results was rather vague, (…of course the doctor had a very bad cold and we had been waiting 6 hours to see her, so no one really wanted to talk about anything).
That was in July, and now she is feeling better. The incision still hasn’t healed, (it has to heal slowly from the inside out) and for the past two months we have been seeing the oncology doctor to start chemotherapy. This has been frustrating because the oncologist would like to begin treatment, but can’t until the incision has healed and other hospital procedures are completed, and everything inside the hospital takes time…even with URGENT written on it.
My part in this has been my mother-in-law’s advocate and nurse. I learned quickly, crash course style, how to change a colostomy bag, how to change a dressing, how to talk to doctors, how to go from one department to another inside the hospital looking for results and answers, and how to have a lot of patience. Knitting helps with that.
So far our worst “waiting” day was arriving at 10am and being seen at 2pm, then being told we had to see her surgeon who was working in emergency. So off to emergency where we waited till 9pm to be seen. That was a long day. I learned that being nice helps getting the nurses on your side.
I also joined an on-line ocular melanoma group which has really helped me understand more about my nevus. It is a hard group to belong to, sad, and sometimes I feel like there is cancer every where I go. But I also think this has made it easier for me to help my mother-in-law.
I think her cancer has been very hard for her and her family because no one has seen the effects of her caner. Her cancer never made her sick…the operation made her sick and in pain, but not the cancer. Everyone is scared of cancer, but without physical symptoms this cancer is hard to blame.
I know this is supposed to be a fibre blog, and I am sorry for going off track, but helping my mother-in-law is a large part of my life at the moment. Luckily, I have my mom visiting and she has helped support me through all of this. She has been here since June, and it is very nice having her here for this long stay.
And just because this is a fibre blog, here is some waiting room knitting, and soon exciting news from Créatif!
Not really a cloud, but a nevus.
This past week I went to Santiago with my family for another scan of my eye and a visit with my ocular oncologist. My nevus is brown, 1.5 mm wide, 2.4 mm long and 0.6 mm thick. And the good news is that these measurements have not changed since my first scan six months ago. This means that my nevus is stable, and for now not showing any signs of melanoma.
My doctor wants to continue watching it, iris melanomas can grow very slowly, but for now it looks good.
I was surprised by how happy the news made me feel. I had been putting on a brave face, but secretly believed my nevus was growing. So to find it stable was great!
I know this is not over, I will have to live with looking in the mirror everyday and checking that it stays the same. And for now I can relax. But this has brought me into the world of rare cancers and stories of people who are not so lucky. Of how hard it is to cope mentally with a vague diagnosis, and how widely different cancers can be.
So I put this post out into the world for anyone who is dealing with the uncertainty of an iris nevus/melanoma, and hope that they know they are not alone.
It has been a while since my last post, sorry, I have been busy. Mainly with little things, like my dying washing machine. (I am such a terrible house wife, and hand washing the whole family’s clothes really is not fun and I did not do it very well!) I finally got a new machine, and it is a joy to be able to put clothes in, walk away, then come back and put them on the line…nice and clean. Be thankful of modern luxuries.
Also I started going to yoga classes, which I love. Many people have recommended yoga, and for a long time I have thought about it, but the breathing in yoga has always scared me, (and it is a big part of yoga!) My problem is that when I think about my breathing it makes me feel short of breath. However, when a good friend came back to Chile and started teaching yoga, I couldn’t miss the opportunity of having a friend help me with my breathing fears. She is a great teacher, and also speaks excellent English. For anyone looking for a bilingual yoga teacher in La Serena, here is her facebook page Yoga Jessyyoga.
And the results are great! I love how the yoga makes me feel; it pushes me, but at the same time helps me relax. Which I really need. Since I started taking the ergot based migraine medicine last year, I haven’t had a really bad, (as in a day in bed vomiting) type migraine, but I am still having lots of small migraines and feel I am taking the medicine too often. (not more than what the box says, but still a lot) However, without the medicine I know what my migraine will turn into, (a day in bed vomiting and another day to recover).
So this past month I have been going to yoga, taking a multi-vitamin with magnesium in it, (good for migraine sufferers), and trying not to eat foods that I think are triggers. Part of this is to control my migraines better, but it is also to look after myself and give the freckle in my eye everything it needs to stay a freckle.
Ah yes, the big ones, my freckle, which is actually a nevus/melanoma. That is what my scans and doctor call it. I visited my doctor again last week and she said that my nevus looks good; no changes, clean edges, not too thick. She also explained that there is less than 5% chance of it turning into melanoma. However, she also explained how a nevus can grow but still be a nevus, and a melanoma can be small and never change, so telling the difference between the two is difficult. So we wait and watch because there is more risk from operating, than what a large nevus or small non-growing melanoma could do.
Looking on the internet, (which they tell you not to do) the statistics from one study of 1611 patients with iris nevus, showed growth from nevus to melanoma to be “<1%, 3%, 4%, 8%, and 11% at 1, 5, 10, 15, and 20 years, respectively” and “risk factors for growth, identified by ABCDEF included Age young, Blood (hyphema), Clock hour inferior, Diffuse configuration, Ectropion uveae, and Feathery tumour margin”. Of the six risk factors, I have A (age ≤40 years at presentation) and C ( 4:00 to 9:00 clock hour location of tumour). from “Iris Nevus Growth into Melanoma: Analysis of 1611 Consecutive Eyes: The ABCDEF Guide.”
And because I visited the doctor last week and have to go back in July for another scan my nevus-not-cancer-but-may-be-one-day is on my mind. Always is when I have an appointment, (the rest of the time I don’t dwell on it so much). And really, I don’t know how to think of this. Do I think of it as just a nevus that will probably never change, and ignore the cancer side of it, (that kind of feels like denial). Or do I admit that I may have cancer but as long as it doesn’t change, it is not very dangerous? And I don’t understand why this feels so complicated. Maybe I am a bit of a control freak, and controlling starts with having the correct name! Maybe I should call it a tumour, not as innocent as a freckle, but not as scary as melanoma. Maybe that is easier to explain to people as well.
I know this is supposed to be a craft blog, or farming, or expat living in Chile, and not a cancer blog, (but it is mine) and this small brown freckle is causing me all sorts of thoughts and questions when it looks back at me in the mirror every day. And putting this all out there, into the wide world helps me put it into perspective. Because there are many things worse than what I am dealing with, and I know I am very fortunate; I have the little things in my life, not just the big ones.
Really, this is supposed to be a blog about fibres and soft squishy handmade objects, but we haven’t seen many of them here for a while. I have been knitting and creating things, and to prove it, here are some completed projects to start this post.
The scarf and hat I knit for my husband for Christmas.
And this is a scarf I started in December of 2010, (gulp) and only just finished this week. I had not forgotten the scarf; I would pick it up, knit a little then tuck it away. For two years.
And a felted doll, just playing.
But, I must admit that after visiting the ocular oncologist last month about the freckle on my iris, I have spent a lot of my time learning about Ocular Melanoma, or OM.
This week I went to Santiago to have an ultrasound biomicroscopy scan done of my eye. The doctor did this by numbing my eye then putting a small tube over it which she filled with water. Into this she put a probe to scan my eye. The results will be ready next week, (however, we will probably collect them when we see the oncologist in a few months), but she said the nevus, or freckle, looked fine. Flat, this is a good sign.
Of course, she also said that this will not show if the nevus is benign or malignant. That takes time and observation.
I am finding everything a bit confusing. What I have learned from reading on the internet, and cyber chatting with people on Ravelry, is that Ocular Melanoma is a rare form of cancer, around 2500 cases in the USA a year. OM in the iris is the least common, but with better survival rates. This may be because it is visible and it can be treated earlier. Also, because OM of the iris normally grows slowly, it is sometimes never detected as cancer, and just appears to be nevi. I think that is what the doctor meant when she said I have to wait. There may be malignant cells in the nevus but until they do something different, like grow fast or change colour, nothing needs to be done.
So even though I have been given a green light, and during the day I can accept that I don’t have cancer, in the night it is not so easy. I have been waking up scared and I am trying to turn these feelings around to make changes in my life to stop the cancer from ever coming.
Three months ago I had never heard of Ocular Melanoma, and what a “sneaky” cancer it is. Most people know what to look for with skin cancer, when to have a mole looked at, or the risks they take when smoking. Women know to get regular Pap smears and mammograms. Men know to get their prostates checked. But then there are cancers that sneak up on you; childhood cancers, or cancers that are rare and receive little news coverage.
Ocular Melanoma is rare, but like many cancers, survival rates seem to be improved when the tumours are detected early. A person may have no symptoms and because most tumours are inside the eye only a doctor can see them. Regular eye checks are important.
I know I do not have Ocular Melanoma, (for now my freckle is only a freckle) and so have no right to warn people or give out information, but this is the internet, and if I can help someone searching, and find more information, then I will. (However, remember this is the internet and does not replace talking with a doctor). Here are some links I found useful, although it is all very confusing, and what gave me the most comfort was cyber chatting with people who have OM.
A Cure In Sight – a new charity to help people pay for their treatment. This site has a good list of links for more information.
[Love X Infinity]2 – The Not-Quite-Fairytale of a Cancer Princess, good links and personal perspective.
Interview with Oliver Sacks on Vision, His Next Book, and Surviving Cancer.
Eyes, the windows into our souls.
When I look into people’s eyes here in Chile, I see many shades of brown, sometimes the odd green, but rarely blue. I never realised how different my eyes looked until my husband introduced me to a friend with very pale eyes; I was amazed.
In 2007 my eyes were completely blue. Then one day in 2009, my husband looked at me and said, “you have something in your eye”. It wasn’t something in my eye, it was part of my iris that had turned brown. It didn’t hurt or effect my vision, and unless you looked closely, you wouldn’t even notice it.
It never occurred to me that it could be anything bad. I had never heard of ocular cancer and knew nothing about it until I had my vision tested for new glasses and the doctor examined the brown spot. Cancer of the iris is very rare, and what I have at the moment is a nevus, or a freckle. The doctor in La Serena recommended I see a specialist in Santiago.
So, yesterday my husband I travelled to Santiago to see an ocular oncologist who examined and took pictures of my eye. She also asked for me to have an ultrasound of my eye, which means another trip to Santiago. Then in a couple of months I will go back to see her. She will use the photographs and ultrasound as a base to see if there has been any changes in my eye.
She says my eye looks fine, but needs watching because the spot wasn’t there before. Changes in size or colour is what she is looking for. I think this was growing slowly during 2008, but we didn’t notice it and since 2009 I have not noticed a change.
Before we talked to the doctor I thought she would tell me the brown spot was either something or nothing. Not, for now it is nothing but it could be something.
I am not sure what to tell people. Cancer is the last thing anyone would think of if a friend was having a lot of eye tests. And no one wants to hear or talk about cancer, for obvious reasons. Information on the internet (which is not always reliable), says cancer of the iris is one of the easier cancers to treat, but people hear cancer and get scared.
And I don’t want to scare anyone,
so I don’t have cancer,
I have a freckle.
A freckle that makes me look a bit like a cat, if you get close enough to me.