Nearly 5 years later and what I can do to support you..
April 3, 2013
Filed under cancer, chemotherapy, hodgkin's, lymphoma, medicine, mesothelioma
Tags: Asbestos awareness week, cancer support, malignant pleural mesothelioma, support
I haven’t posted here in such a long time but i am doing well! Very very well it will be 5 years since I finished treatment this July and though there is a lot i should write about here about getting through the first years of fear of relapse and about how healthily I have been living i will save it for a more settled time.. But just to know that i am well and touring my musical project in Canada and Europe and in a lot of ways all of this seems like a distant memory..
So I am very glad that people are still reading this blog and would reach out with their stories..
Cameron sent me this article he wrote about being a caregiver to his wife as she went through malignant pleural mesothelioma. I am glad to post it and really happy that they made it through so happily.
Please if you are reading here don’t hesitate to contact me with questions or for support. I am not the quickest to reply as traveling all the time makes it difficult but i will do my best to be at least on the other end of an email for you.
e
A Caregiver’s Story
The day my wife was diagnosed with malignant pleural mesothelioma is one neither of us will ever forget. It was November 21, 2005. Heather and I were planning our first Christmas with our daughter Lily, who was just three-months-old. We were filled with joy and anticipation for the upcoming holiday season. However, life had different plans. We found out that Heather had cancer, and began a long and difficult journey to save her life.
We made the first of many important decisions right after the diagnosis. After Heather’s doctor finished telling us exactly what mesothelioma was, I immediately requested an appointment with a mesothelioma specialist in Boston. Heather was shocked, and I knew it was crucial for her to get the best treatment possible. This was the first of many decisions to come, and all I could do was pray that this specialist would be able to help my wife.
The following two months were a blur of traveling, seeing the doctor and dealing with a growing list of responsibilities, on top of work and taking care of Lily. We had no daily routine anymore, and I quickly found myself feeling overwhelmed. I had a deep fear that Heather would die from the disease, and I would be penniless and homeless, with a young child to raise. While I did break down and cry sometimes, I never let Heather see me when I was down, as I wanted to be a pillar of strength for her.
On the positive side, my wife and I were lucky to have many wonderful people who offered everything from words of comfort and encouragement to financial assistance when it was needed. We will never be able to adequately thank those people. I learned that it is okay and necessary to accept help from others to help ease the load I was carrying. If I had to give one piece of advice about caregiving, it would be to accept every offer of help that comes your way. Even the smallest offer of help can be a huge weight off your shoulders, and will remind you that you are not alone in the fight.
It is not easy being a caregiver to a cancer patient. It brings stress and doubt, and it is not something that you can just quit doing when you get tired. I had to allow myself to have low moments and bad days but never let go of hope. In the end, after months of treatment involving mesothelioma surgery, chemotherapy and radiation, Heather beat her cancer and seven years later, she is still free of the disease.
The most important thing I took away from the caregiving experience was learning that I was capable of more than I ever thought possible. My wife taught me this, and watching her fight endlessly and successfully to stay with me and Lily was the most inspirational part of it all. Now, we hope that by sharing our story, we can help inspire others in their own battles with cancer.
long after the fact..
So.. i really abandoned this blog but in my mind it was not forever.. here i am back and ready to finish the rest of the story with it all in a nice big easy blur behind me!
There was a slightly darker period after my last entry, as i said there was three options with regards to that great scan and the last of the four months of treatment. I said there really wasn’t a bad option but it turned out that one of the options was less welcome that the others at least mentally for me and that was the straw i drew.
So after the next two chemo treatments i had my CT and went as usual to pick up the CDR myself since i didn’t have an appointment about it until the following week. I went over to a friends with a PC (we since discovered a great medical scan reading program for mac but at the time we thought the disks could only be read on a PC) so i had a good look at my scan and resigned myself to the fact that it really didn’t look like it had changed much. I had some nachos and watched some tv with my friend and tried not to think about two more months of chemo. When i had the appointment with my doctor and the nurse he told me that the mass had shrunk a good deal width wise but it was still longer than he would like and since the chemo wasn’t really making me sick he wanted to continue to six months. I hadn’t really considered the length of the mass at all and later when we got the better viewing software i could see what he meant, it had gone from being like a grapefruit to a hot dog kind of. So where i felt i had breezed through the first four months i guess i was a bit more hooked that i realized about leaving it at that.
The next chemo was the worst one and i am pretty convinced that it was because i really didn’t want it. i dropped my brave face and pulled my hat down, jammed my earphones in and stuck my arm out. I felt sick and awful for about a week and then finally snapped out of it.. i had another show to play for CMW and dove into that. i got a wig and really wondered why i waited so long! I still hadn’t shaved my head at that point, still having bangs at the front and the sides and wearing hats but it was not good underneath. I was nervous to take off my hat in front of people of course but found a wig place on Avenue Road and went in one afternoon just to see what it was like. Right away i was put at ease by the amazing nice man who was soft spoken and welcoming and there was a private room where they do the fittings. I made the appointment and got a really cute 60’s kind of bob. It was the first wig i put on and i loved it right away. It was comfortable and maybe the next day we finally shaved what was left of my hair and i keep saying ‘why did i wait so long?’ I think i thought i was going to feel fake or that people could tell but i realize i had nothing to worry about.
So with my new wig and my newly shaved head and playing shows i was definitely in a different place. I breezed through the rest of chemo though i did go again to emergency (in a snowstorm) for antibiotics for another cold. The most emotional thing was at the last chemo. I still can’t really figure out why but it was all i could do to keep it together for the two hours it takes. At fist i requested my favorite nurse and they told me he was on another ward so i couldn’t have him. For some reason this was a crushing blow but i had gifts for him and my other favorite nurse. I found him in the other ward and told him what had happened but he said that was crazy so he sorted it out that i could be with him in this other ward. As usual he was so kind and amazing and almost seemed a bit tense getting the IV line in, letting out a big sigh when he was through he said ‘I do it every day but when you’re doing it for your friends it makes you nervous!’ so sweet.
When i was finally done ‘every last drip’ as my nurse always says, with his arms waving he rallied people and other nurses to come over to the big gold bell you ring when you are finished all your chemo. Again for some reason i was fighting back tears and they didn’t seem to be tears of joy, i can’t think why. Still choking them back i rang that golden bell and gave my nurse a big hug of life.. i tried to put into it all the gratefulness i could and tried to tell him with my watery eyes and no words how much i appreciated him being so amazingly kind through such a vulnerable time for me. I found my other nurse to give her her gift and apologized and marveled at my tears and she said that it is not unusual at all, that people feel like an umbilical chord is being cut and that they are not ready to go. I think it was some of that but i think also i was just very moved by their kindness and would miss them. Maybe i am not too good at moving on or saying goodbyes. Needless to say it didn’t take long before i began to feel more celebratory. My family came over for sushi and we quietly rejoiced.
picturesque
You know its a good sign when you get an excited hug from your administrative nurse! before the holidays i had another Gallium scan and another CT scan. Before heading east to enjoy egg nog in snowy surroundings we waited around the hospital eating sushi and fries in the cafeteria to walk away with all my scans on CDRs. I had no idea you could do this but the amazing gallium technician mentioned it to me over chit chat about Jan Arden’s blog and Rufus Wainwrights Judy Garland tribute. I simply walked up to medical imaging not even noticing the sign that read ‘get your CDRs here’ (or something to that effect) and they handed them to me half an hour later. We mulled over them through the christmas cheer but didn’t want to get too excited and weren’t exactly sure what we were looking at. On the 28th of December my oncologist and nurse led us into their office and showed us the computer screens. It was good news, hug worthy news. The mass in my chest is less than half the size it was and the Gallium is negative which means if there still is living cancer cells they are too few and far between to be picked up by the scan. the CT results lead to some options but all good. If by the time of the next scan the mass has continued to shrink with the chemo then they proceed for the full 6 months (three more months from now) and then the radiation, if it stays the same it means it is only scar tissue left and so they cut two months from the chemo treatment and go straight to radiation. If the mass is completely gone then they cut the last two months from the chemo and debate about the radiation. I proceeded to easily and lightly enjoy the following weeks knowing that everything is moving in the right direction, playing my new beautiful guitar and wearing my christmas slippers and socks and hats and mitts.
Happy and warm.
neutropenia
December 10, 2007
Filed under Uncategorized
Tags: , cancer, health, hodgkin's, low white blood count, lymphoma, neupogen, neutropenia
it sounds like a groovy sixties album title.. it isn’t really.. I found out just before my third treatment that i have it.. i am neutropenic, another thing to be, its having a very low white blood cell count and your white blood cells are your immune system. It is normal for your white blood cell count to drop going through chemotherapy but some people are very sensitive to the chemo and it gets too low. Thats me. Its not a bad thing really there have been studies that suggest that people who are that sensitive have a better success rate with the chemo drugs. So thats fine, the down side is the increased risk of infection and having to take another drug called neupogen and its side effects which normally include sever bone pain (neupogen causes your bone marrow to go into overtime producing more white blood cells, you feel the ache in your bones). The Neupogen has to be injected under the skin for five days following chemo treatments so the after my third treatment where my white blood count was down to 0.1 (but the treatment was fine, calm and alright, i am used to it, just reading magazines with my mum) i went back into the hospital in the morning for a clinic called ‘Look Good, Feel Better’. It was a nice thing, other women in various stages of my position and myself led by some other nice ladies about dealing with the trials of makeup and hair and cancer. I got lots of nice products for free and some good tips, the main being under no circumstances share your makeup with anyone else because of the risk of infection. It was fun sitting around trying out the new products and the makeup tips they suggested. Afterwards a couple of us stayed and talked a little bit about what we were going through. They were all older then me and had breast cancer though one woman had had Hodgkins when she was 26 so it was interesting to talk to her about that but her treatment was completely different. They were strong brave women talking casually about where to get the best fake breasts fitted. I sat rather quietly marveled.
I then headed down to the Lymphoma centre with my first vial of neupogen on an ice pack to get the nurse there to do the injection. I told her i eventually wanted to do it myself so she walked me through getting it out of the vile, switching the needle to a smaller gauge for the injection, getting the air out of the syringe (the best part, you feel so professional!) and the angle of attack. she did it to me though she put it in my arm. No problem. No headaches or bone pain and it continues that way through the 5 days. A lovely nurse came to my house the next day and walked me through the process again though she put it in my leg so i would know what that feels like since it is an easier place for me to do it myself. The next day she supervised while i did it. the worse part was making my hand move forward to stick it in. I said in a frantic voice with the needle poised two inches above my thigh squeezed up with my other hand ‘do i do it now? now? now?’ Calmly she said ‘take a deep breath and then just do it’ i breathed in and plunged my hand forward. Really there is no resistance and no feeling of pain, a little bit slowly squeezing the syringe but not bad at all. I did it, i wanted to go away for the weekend so i needed to be able to do it myself. It was great to have that as a motivator. The next day with friends sitting around i did it calmly and professionally. I have great friends they were fascinated and so supportive. It was a great weekend running around in the snow and eating and talking and no bone pain at all, i would feel the slightest ripple of something in my shoulder or chest but nothing even really to speak about.
Since then i have been having a great time going out, playing bass in a friends band and shopping in kensington market.
Feeling psychedelic and groovy.
e
the one that seems to make it cancer.
I have been rather slow on the updates since there has been little to report this time! definitely a good thing i have felt really very little side effects from the second treatment at all.. none of the achy fluey or shoulder blade pain. This may seem rather indelicate but for anyone going though Chemo i think this is important to tell. My Naturopath advised me that if i could really get on top of the constipation (caused by three out of four of the ‘ABVD’ drugs in the treatment i am on and also the steroids, then the side effects would be less.. i had tried to deal with it with food last time but eventually took the Docusate and the Senna.. this time i took them straight away and ate very carefully and took lots of epsom salt baths (also great for drawing out toxins, 4 cups per bath) and i have felt completely fine. I did have that cold and spent an hour last saturday in emergency to be prescribed some antibiotics. Thought the doctor was reticent about giving them to me the seem to have done the trick apart from a bit of a residual cough that will hopefully go in the next days.
The only thing has been the dreaded hair loss.. i didn’t see any signs of it until tuesday night when i had a bath full of hair and brushes full and pillow cases covered… I dashed out wednesday for some last minute hat shopping and spent a lot of time picking the hairs out of them.
I don’t feel too bad about the hair loss.. its funny you dread it until it happens and then you just deal with it.. having said that i have hardly touched my hair in days! haha (they say only to wash it every three days and use baby shampoo) it looks pretty thin and is a disaster but who can tell under a cute crochet beret (from a dear friend) or beige with swallows on it or a great slightly brimmed knitted chapeau kindly sent over by another great friend who spotted it for me in Top Shop? There is snow on the ground here and thereby it is toque (canadian for knitted hat) season.
Its the side effect that seems to make it unequivocally, visually cancer.
I feel fine.
It grows back.
e
science experiment..
i do feel a bit like an 8th grade science project, all the chemicals running through my body, all the different reactions going on under my skin, all the effects they are having. Chemo drugs first and foremost kill cancer… Hooray! secondly tax the organs; drink dandelion juice, Chemo drugs kill the immune system; drink orange juice eat mushrooms. Bright fluorescent liquid coming out of my nose with this cold didn’t help! i felt like i was playing a gross practical joke on myself like i just figured out how to make something yucky with the chemicals and the bunsen burner. Yellow comes out; put antibiotics in, kills sinus infection side effect kills digestive bacteria put live bacteria yogurt in and try to strike some kind of balance.
chart your progress, make some graphs, write up your conclusions and paste them on bristol board.
1st prize!
e
two days past second
November 15, 2007
Filed under cancer, chemotherapy, hodgkin's, lymphoma, medicine
Tags: cancer, chemotherapy, hogkin's, lymphoma
Wonderful wednesday brought a cute short haircut and seaweed and pickled ginger salad and coffees (herbal tea for me) and feeling great. No blurry vision this time so far and no strange jaw feeling.. interesting.. just fighting this cough and cold still. I had never really thought that short hair would suit me but i am pleasantly surprised! My hairdresser is so amazing she is an artist so it was bound to be good. I came home to beautiful flowers, gerbera daisies in fall colours with bright happy open faces, from rainy england with love. Also an amazing get well soon wish from hugh laurie as Dr House! through and amazing friend in LA i couldn’t believe my eyes! hahah it is a 8×10 of him holding up a prescription pad and one it is written ‘Erin, Get Well Soon, Hugh Laurie’ unbelievable! hahaha..
an all around fun easy day!
e
Second Chemo
November 13, 2007
Filed under Uncategorized
Tags: cancer, chemotherapy, hogkin's, lymphoma
We woke up early for my second chemotherapy treatment, another grey misty morning, another dose of healing medicine. It all went according to plan, my administrative nurse came in to talk to me about the stranger side effects i had experienced but wasn’t overly worried as long as it doesn’t happen again. I was a bit worried about my cold and my white blood counts but it seems that they don’t check those for the second parts of the cycle only the first. I didn’t have a temperature so it was all a go. My nurse was so nice, some comfortable and casual, very experienced, chatting about her kids and her life. She did say that i would lose my hair this week which i am trying to keep from happening with the power of the mind! hahaha.. i didn’t think it would be so soon, they did a study a few years ago and all the people receiving 40 (i cant remember the unit of measurement mg? cc’s?) of Adriamicin all lost all their hair. I receive 39, so we will see. In the meantime i am getting a short cut and on the hunt for some more hats.
I had my lovely lap quilt that i got as a gift this week from my dear friend and his family, his mum belongs to the quilters guild and it is the most beautiful thing, crimson with blue flower patterned patches on one side and patterns of kimonos on the other. My friends mum had looked at my website to see if she could discern my tastes and my website is very quilted (though i faked it by collaging small squares of origami paper together) it is absolutely perfect! and comforting and lucky. It all went very quickly and easily, i had the Dacarbazine pumped slowly again, it does really ache going in to fast for me even in combination with the saline, no problem though just an hour and a bit instead of 45 minutes. It is so much easier when you know what to expect and have done it before, easy peasy. My mum and aunt were with me and they are very entertaining so the time flew by and then a nice day and a lovely evening on the town.
One more dose of healing medicine flowing through me.
foods that fight cancer..
The Retail therapy must have done the trick, the flu feeling is gone and the pain in my back is much less.. but i have an actual cold. I cant imagine how i got it i have been so careful! but at least my white blood cells must not be doing too bad because my temperature stays stable. The acupuncture was great, made me feel very relaxed and zen but that night was the first sleepless one i have had in a long time. It could have been completely different reasons though.
today i got a new juicer, a really great one that even juices wheat-grass and leafy greens and makes nut butters and pasta! my brother and i picked it up at the post office and brought it home and proceeded to make the most revolting hardly drinkable juice i have ever tasted! i was really interested in the fresh greens juicability so i just took everything green out of the fridge, watercress, kale, celery and broccoli.. don’t do it.. we finally added lots of apples and pineapple and was mildly tolerable.. we laughed as we forced it down.
I also did some reading in a book called cooking with foods that fight cancer. Apparently Shitake mushrooms are great for helping your white blood cells which are your immune system and take a beating with chemotherapy. We had a big bag of dried ones in the cupboard that i soaked and added to a colourful stir fry with a tahini sauce and brown rice for dinner.. delicious!
e
Retail Therapy
Well after Friday night’s dramas i slept most of Saturday away, Sunday sleepily attended the wonderful dreamlike concert of my friends string orchestra in which he played a solo on his cello that i was sure were angels singing it was so other worldly (and we were in a church) Monday begged for some serious alternative medicine. Glorious retail therapy. Though the last two days i have been feeling achy and twitchy and like i have the flu (somewhat more rare side effects it seems) and obsessed with taking my temperature since all these symptoms say infection to me (but not this time as my temperature stays solid) i would not say no to a bit of shopping. We got some mixing bowls and the cutest hat and mitts ever knitted, a cool rolling overnight bag and an electric heating pad for my back (between my shoulder blades) which has been the most pain besides the ‘heartburn’ of the other night, and some new albums. My vision seems better today, all the better to see the bargains! One of my friends is a naturopath and is coming over tomorrow to do some acupuncture on me, hopefully this could take the edge off the twitchiness and the back pain, i have always been very interested in acupuncture so i cant wait to try.
In the meantime i will play with all my new goods!
e
Erin's Hodgkin's Blog 