All this and a funny hat

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.

Drawing class

 

Sewing class

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!)

Pottery class

Pottery class

I have been spinning and knitting, testing projects that use small amounts of hand spun.

Me

A little large for me, but fun, and who doesn’t need a funny woolly hat in the middle of summer!

 

 

 

 

 

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Taking control

With my mother-in-law’s cancer we have been spending a lot of time at the hospital, mostly in waiting rooms. Usually these long waits are because of the hospital or doctor, and there isn’t much we can do. However, sometimes it is because we forgot an exam result, or misunderstood a telephone call. There are so many things to remember and understand, on top of all the stress and fear, that sometimes we make mistakes.

Luckily there are some things that can help, like a healthcare binder. Here is a link with great advice on how to make a binder for a patient.

http://lisabadams.com/2014/10/06/healthcare-binder-tips-organized-patient-caregiver/

And here is one I made earlier for my mother-in-law.

BinderInside the binder there are different sections with small pockets,

Binder2

 

calendars,
Binder3and clear plastic pockets.

Binder

I had to improvise because I couldn’t find all the type of “pockets” I wanted, but I think it will do the job just fine.

 

Waiting room knitting

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.

Scarf

And just because this is a fibre blog, here is some waiting room knitting, and soon exciting news from Créatif!

Only love

I don’t usually write when I am away from home, but I thought tonight was a good time to write, as long as the hotel’s wifi holds.

I am in Santiago and just got back from another eye scan and visit with my ocular oncologist. They were good visits. Mainly because I was calm and not worried like last year.

The scan showed a very slight thickening in my nevus, but there was no change in my vision or in it’s edges. So it is stable.

image

I feel so fortunate.
I feel like I have been given a gift.

This morning when I woke up and checked the internet, I found the new post from Sarah Elizabeth, an OM fighter, a cancer princess. I cried reading it. There is nothing I can write to express how unfair the world is. Why some people waste their lives, while others have so little time to do and feel everything.

For the cancer princess…Only love.

Learning to fly

March. The month, not the action.

This week my girls went back to school, and for the first time in years they are both at the same school. However it will only be for a year; this is the last year of school for my oldest. Her last year, and turning 18 in a few months, has made me slow down and focus on her. She is flapping and fluffing her wings with the thought of university, and the possibility of studying away. I would love to keep her close, but I know I have to teach her how to fly.

My youngest is adjusting to her new teacher and classmates, while taking over my studio creating in the evenings and weekends. With the confidence I gained last year in the craft fairs, and with a lot of help and encouragement from my youngest, I finally converted one of the rooms in the old cheese building into a sales room.

The room is the closest to our house and for years we have used it to store our excess “stuff”. The room really needed a clean, and this was partly my reason for converting it into a store. I took “before” pictures, but it is very embarrassing how bad it had gotten! I am a hoarder!

before corner

Before

after corner

After

before window

Before

after window

After

For now it is not open as a store but it is available to show my, (and my youngest’s) work. And we are full of dreams of opening on the weekends!

little store

I have also been busy dyeing wool in my solar oven and making neck warmers with chunky hand spun and recycled silk. I am lucky that my Dad likes silk shirts and that they don’t last him forever!

neckwarmer

neckwarmer2

With March here it is also time for a visit to Santiago and my eye doctor. I will have another scan and check up, to see if my nevus has grown.  The first year with my nevus/melanoma was difficult and scary. However, when I learned it was stable, for some reason I felt better prepared; stronger and braver for the day when I do have to fight it (if I do). I learned how to talk about Cancer. I think that was the hardest part, being able to talk to people and not have them react with dread, fear, pity, when all I wanted was to talk.

But why did this happen to me? I believe things happen for a reason, and when my mother-in-law was diagnosed with bowel cancer late last year, I was the “cold one” she could talk to. I was the one who could say Cancer, and let her say Cancer without everything crumbling around her. I love her dearly, and I know she is scared, but I hope I am helping with my “practical” ways.

Her doctor is very positive, the tumour was found and identified early, (no thanks to the first doctor she saw, who sent her home with a cream saying it was just an old person’s complaint, luckily she didn’t agree and went for a second opinion). She wanted to tell her family in her own time, and that is why I didn’t post earlier.

Two weeks ago she travelled to Valparaiso to start her radiation and chemotherapy. She will be there for about six weeks. My husband and oldest are going to visit her this weekend, with her daughters visiting the weekends after. My husband phones her every afternoon, and she says she is doing okay, and I know (like so many women I know here) she is strong. But even with her strength, and wanting to protect her children, I hope she will let them take care of her for a while.

The cloud in my eye

Not really a cloud, but a nevus.

Eye3

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.

The little things and the big ones

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.