Sunday, July 27, 2008

Hi to everyone,

I'm done my first week of radiation, which also means I'm half way done. This first week went well. Not really any major side affects. Half an hour before each zap I take a couple pills to prevent the heartburn and nausea. I've been okay in that department. Actually I feel quite blessed with the treatments. There are others at the Lodge that have open sore, thrush, no appetite, swelling, canes, walkers, oxygen tanks and feeding tubes. Many are side affects from the radiation and\or chemo. It seems the side affects can be more of a downer than the actual cancer. There is always something. For me the worst is a bit a cramping from all the drugs I take and bathroom breaks take a bit longer if you get my drift. This weekend the cramping was bad but turned into the runs and I wasn't sure if I picked up a virus or not. I don't want to pass anything around the Lodge! The doc said I was fine to go back and keep up the last week of treatment. Like I said I have nothing to complain about, I am definitely one of the fortunate ones. Also many of the patients at the Lodge are there for six weeks!! Life at the Lodge is good, the food is amazing and everyone is happy and friendly. All the talk is about the treatments, how is everyone feeling, and symptoms, but that is our life right now. Everyone has cancer. Everyone is being treated for cancer and we all live together in a home for cancer. Everyone is so happy and upbeat though that it isn't even depressing. When you go to the hospital all the hundreds of people you see walking around in the department have cancer and are being treated for cancer. You live in a cancer world literally and you begin to think "Does everyone in the world have cancer or what?". "Is there anyone out there who doesn't have cancer?". It was a new feeling to come home for the weekend and go to the grocery store and bank and realize the world is a bit bigger than the cancer world.

Don't think that I didn't do anything else out in London, the actual treatment is only 15 mins a day. Remember I had my friend with me and we had wheels! (The other patients were jealous - some just stay at the Lodge all day long for six weeks - going home for the weekends). She got her haircut while I relaxed getting a pedicure! My parents also came up at the end of the week and took me out for dinner (sorry to all my brothers and sister for being the favourite one!) and they brought me home the next day. Also with the cancer society they had a seminar at the hospital for women called "Look Good, Feel Better". They started this group because there were two women who were always positive and flying through treatments and doctors would ask them how they did it. They said before treatments we always go get our hair and make-up done and we feel amazing about they way we feel and look, so our outlook on the treatments is positive. The group started asking make-up companies for extra make-up or discontinued lines and would put a box together (worth $300) for cancer patients and teach them how to wear it. So now I have a new line of make-up at home and my girls are very excited to try some on - I'm not one to wear a lot of make-up but I was excited to learn how to do it (and with no hair, some sort of colouring above the shoulders might be nice). After a man came in to talk about wigs and the different types and how to wear and wash them. How to wear hats and scarves. It was interesting. The stem cell doctor told me I would lose my hair which doesn't bother me at all (I can say that now). I have had long hair since kindergarten. Some from school say I haven't changed bit. I don't know if that makes me old fashioned or that I just age nicely!!! Anyway in August I'm going to cut my hair shorter and than September I will go for something short and wild maybe. Might as well play around with it all a bit. The doctor also said my hair will most likely grow back in curly. Perfect I told him, than I'll look like Pete!

Anyway, hopefully next week goes as well as the first week. Another friend is coming with me from Monday to Wednesday if all goes well and than Pete and the kids are coming up Thursday. We are going to show them where I go at the Lodge and hospital and than we will stay at a hotel with big water slides for the last night. A little fun for everyone during a time where there is a bit of waiting and treatments. My children is going camping this week with Pete and his parents. Hopefully the weather holds out for them.

I still love the old fashion mail in my box at the road, all the emails and blog comments. Your prayers, thoughts and help continue to support me and my family. It is all so encouraging!

Love Pete, Sharon, Natasha, Heather and Shaun.

Wednesday, July 23, 2008

July 23rd, 2008

Well hello again!

For those who thought I was just going to do a report ...your wrong! Yesturday I was in London for Sharon, doc visit and all said and done I took her to the Mandarin for supper, in between plate full, she wrote out the blog so it's another journal (and she ate more than me). I would also like to take this time to thank everyone for the cards,calls and e-mails, what a family we have out there far and near, also the people that ask how my children and I are hanging in. It's a tough road, a lot of weight on our shoulders but still manageable. There's one saying growing up that I'll never forget:"Not a hair will fall from your head if it is not HIS will", now Sharon's turn...

So far radiation is going well, not many side effects. Radiating a 3" long by 1" wide spot on my spine. All I feel is a bit of heat spreading through. Radiation Dr. is ordering CAT scan for my chest, he noticed a spot he wants to look at by the sternum. Pelvic x-ray is not bad, holding off any radiation that would be needed there.
Stem cell Dr. met with us yesturday, he was very blunt and upfront which is good. I have to do about 4-5 rounds of steroids before stem cell dialysis can start, so that will probably happen late September-early October. After harvesting and a machine separating white cells away from the red cells and platelets (we want the white cells) than heavy chemo will start. It will probably make me infertile and bring on menopause early, this is ok with us. The Lord has blessed us with a family. The stemcell harvest is a one time procedure, it gives me a remission of 1-4 years before it will come back. Than they hope to have newer improved drugs to help beat it down, there is no cure, just treatments. These are statistics for people mostly in old age. Hopefully being young and healthy will give me a bit more remission time, only God knows. After transfusion which will cathered above my heart and used to feed me (if needed), it will take 3-6 months to get to the point I'm at today! I can only leave the hospital once I can eat and drink on my own. The hospital stay will be about one month with NO kids visiting and ONLY healthy adults. No colds, coughs, sniffels, fever, etc!! or I'm a goner. There's a 5% chance of not making it through the transplant procedure alone. My immune system will be shot for 1-2 years, I can get shingles, cold sores, viruses, etc., very easy. I was told by the doctor to expect a rough road ahead. One day at the time, today is good we'll see what tomorrow brings! Everything is in God's capable hands.
The lodge doesn't have a pool but they do have all you can eat fruits and unlimited gingerale! The elevator doors open before you get to the next floor. There are no locks on the doors but our closets lock. Bingo is Wednesday, Eurchre on Tuesday, movies on Monday, support group on Thursday, Friday check-out. We are having a good time at the lodge though and the service is great and the people go above and beyond what you'd expect. Many patients talk about their treatments but are always smiling. My friend and I go out at night. After treatments all day, I don't really want to hear about it all night. 2 days down, 8 to go.

Much Love,
Pete, Sharon, Natasha, Heather and Shaun

Friday, July 18, 2008

Hello,

I am back from London a little early. Pete and I went to London on Thursday (got bumped a day) to meet the radiologist. At this visit he wanted to get to know us and our situation. He also did an examination -checking all the bones in the neck, collar bone, back and ribs -and he found that I had a broken rib. So that explained some of the pain I've been having, but I think he may have made things worse because he was a bit hard on some spots. Today I've actually taken pain meds in the day because the ribs and spine are quite sore. He also ordered a X-ray on my pelvis because the pain in my hips and lower back have been getting worse too and he wants to be sure there are no fractures before we start anything. At one point in the exam the doctor was squeezing my upper arm and asked if I had swelling there - I told him that's called my muscle! (that's the Nordeman coming out).
The actual radiation will start on Monday and go till Friday and I do this for two weeks. I had to do a "planning CAT scan" yesterday as well. This is where they figure out exactly where the radiation will go in my body. I had to lay face down on the bed and the techs wheeled me into the "big donut" and I wasn't allowed to move a muscle. My head was slightly propped up and so were my legs so I wasn't in the most comfortable position!! Anyway they found the spots on my spine and marked them in ink and then told me they were going to permanently tattoo them on. I asked if they were going to put the needles in and they said it would feel like a bee sting. I don't mind needles at all but I do like to see them coming - kinda hard when you are face down in a backward arch! They said "Here comes the first needle, second and now third". I asked "Those were the bees?". Yes. I said "I was expecting the whole hive!" So it wasn't so bad after all and now I'm the new owner of three "freckle" tattoos. (My kickboxing instructor would be so proud. I was one of the only ones at the club without a tattoo.)
The radiologist did talk to us about the radiation. It's a laser that kills off any cancerous cells in the spine and than hopefully new good cells grow in it's place and repair the bone on its own. This is why its so important to localize the radiation as much as possible so that other bones and tissue won't be affected. The risks of not doing this on my spine are tricky in the sense that the spinal cord going through the bones could get pinched and leave my legs paralyzed and the bladder not functioning. Another option to prevent that from happening is to fill that piece of the spine with cement to keep it from collapsing. Wouldn't that be wonderful - full of concrete AND tattooed! Seriously though it's starting to sink in how serious this could be. I just keep taking things as they come not really looking to much into the future treatments but it is good to hear and prepare for it all mentally. They also told me radiation can make you very tired and can be painful and with each visit it can get worse than the time before. Sometimes it won't hit right away and sometimes people feel nothing. I might have to wear sunscreen after as well because it can leave red spots. Lastly since the radiation is near the esophagus it will cause very bad heartburn to the point of nausea and vomiting. That will be hard on my spine! They said they will give me strong meds to prevent that from happening. I said I had some at home and the doctor said, "No, very strong stuff". So, I'm all set for Monday now. They were going to start me right away yesterday but than changed their minds. Back and forth it went. Pete booked and unbooked the Lodge for me three times! I go to London on Monday now and am in the hospital for 20 mins each day, actual radiation time is 45 sec., the rest is lining up the tattoos. It seems strange to be gone from home that whole time for such a little amount of hospital time! I will definitely get the rest I need and it's a good thing I love to read. A friend offered to stay with me for the first couple of days so that will be fun (if I'm not throwing up and napping on her). This helps out too because Pete is very busy with work and to go to London all the time takes up the whole day. He will still come on Tuesday when we meet with the other doctor about me donating my own cells for the stem cell transplant (another reason they want limited radiation done - so I still have some good stuff to harvest). That's the report up to now. The kids will be staying with others again, at least it's summer time and they can still have fun with family and friends. There have been so many offers from people to take the kids to the beach or to their homes for dinner or to the park. It's a good feeling not having to worry about whether the kids are being cared for or not. It's a load off my mind.
There is still so much to be thankful for even in situations that are trying. I see a lot of kids at the hospital or hear them crying through X-rays and am thankful it isn't one of mine going through it, but rather me. I could be going through this alone, but have a lot of support from everyone. I still feel strong physically but just feel a bit brittle (if that makes sense). The pain is still manageable, it could be worse. There is always something good even in the midst trouble. It's also good to be able to chat to everyone through the blog. I am not one to write in a diary or keep a journal and tuck it away. It's nice to be able to share with everyone.
Thanks to everyone again for your support and prayers! God is good!
Love from Pete, Sharon and the kids.

Tuesday, July 15, 2008

Hi Everyone:



Monday I went to the hospital for a MRI. I was told I was going in head first and that it might be a bit noisy. I put on a shower cap and then some construction head phones and was rolled into the tunnel. At first it sounded like the theme song to The Rescuers Down Under (kids movie) with all these strange Australian instruments and gongs, then it sounded like someone was hammering away on the outside of the machine which turned into jack hammering, which then just sounded like the neighbour running his lawn mower and I was lulled to sleep!! Every once in a while they would say "We are going to move you now" or "Are you okay in there?". I kept thinking "you keep waking me up". It lasted about 25 mins and it wasn't as bad as I thought. I went to oncology to let them know that I was done so they could hound MRI for results. I was just punching out my ticket to leave the hospital and the machine said "you have 20 mins to leave the parking lot" when the MRI tech came running "Sharon, Sharon (pant, pant, pant) we need you back, we did the wrong sequence. Do you have time?" "20 mins" I said. They offered me a new parking ticket and took me back gowned me up again and wheeled me in for my second nap of the afternoon. This time only 10 mins.
Today I went to my family doctor just for an update and because its protocol when you renew your subscriptions over the phone. He said I look like me yet. Sometimes these steroids can bloat the face and abdomen. At night sometimes my stomach feels a bit stretched but by morning I am back to normal. I was looking on the Internet and the steroids I'm on are a mild chemo - nothing body building about them. Pete said he knew they were chemo. Half the stuff the doctors say go in one ear and out the other, I'm usually tired or my head is in a fog. I like to take someone to the doctors just for the second pair of ears!
This afternoon the oncologist finally called back with the results of the MRI. I have quite a big cut in my spine that will need to be radiated - tomorrow. So I am off the London tomorrow whenever the hospital calls back with a time. She warned me the radiation could be painful right away or might not hit until next week. I'm taking all my drugs with me! They have a Lodge in London close to the hospital that I can stay in, meals included plus a shuttle back and forth. I will be there for three days anyway. Hope to be back for the weekend. It almost sounds like an all inclusive! I'm going to see if they have a pool there!
This past Saturday we had family pictures. My nephew's girlfriend is into photography and does a great job. We went to Inglis Falls and had some shots by the falls and along the trails. Later we went down the road to a farmers field and hopped on some round bales (the farmers were home for dinner). The bales were huge, up to my shoulders! Pete helped me on but I probably should have waited to get help down. I gently slid off by the impact of landing still jarred my back. When I went to oncology on Monday she asked about the pain and I mentioned the family pictures on the round bales. She was stunned and said "Um, don't people usually go to I don't know um..?" "Sears" I said. "Um, yes" she answers. I told her they don't have those kind of props at Sears and they also won't take 200 pictures of you either! The oncologist and I get along quite well actually, she has a sense of humour too, and she doesn't seem that much older than me.
I love to hear from everyone, all the e-mails and cards and comments. The support our family has been receiving has been amazing. All the prayers that carry us, the warm meals at night and the care of the kids and home in the afternoons so I can rest or hibernate and have time to myself. The communion of saints is truly a great gift from God. Hopefully Pete will update the blog while I'm away if anything major comes up. It's great that things are finally happening, but on the other hand - things are starting to happen!! I'm at the point of "let's just do this now". I know that no matter what happens I am safe with the Lord.
Talk to you soon! Love from Pete, Sharon, Natasha, Heather and Shaun.

Friday, July 11, 2008

Hello, I'm back again!

The last blog I sent two days ago was posted from my computer at home and mysteriously disappeared. A few minutes later we got a call from Pete at work saying the blog popped up on his screen at work. The blog you read was cut off, so if you think it ended abruptly you are right. Today I had my IV which went fine, I don't mind needles at all. Later I met with the oncologist who booked an appointed in London for July 22 to meet the doctors there (since they hadn't called me yet). I had been having pain in my right ribs again after camping and even went to the ER for the pain thinking something more was wrong but they couldn't find or do anything. The oncologist wants me to go for a MRI on Monday. She thinks the pain in my ribs are the nerves in my spine, but I feel the pain further along on my side. If the lesions (or cuts) in my bones are bigger than they think I will have to have them radiated. They are trying to stay away from the radiation because that will effect the transplants they want to take from myself. Tuesday I'll know for sure if I need radiation. Finally! I have had pain in my ribs since February and no one could explain it and x-rays always show nothing wrong. It's almost half a year later. London will just be to meet the doctors and maybe talk about how to proceed. Today the oncologist started me on another three rounds of steroids. Here starts the roller coaster again. I just have to do what needs to be done, at least I know what to expect. Nothing else to report. The kids are now done swimming lessons and they all passed. Yesterday our son Levi would have been six years old. How time keeps moving.

I have a e-mail address now: psoosterhoff@sympatico.ca

Thank you all for your continued support, prayers and the cards that come in the mailbox - I love it!

Love Pete, Sharon, Natasha, Heather and Shaun.

Wednesday, July 9, 2008

Wednesday,July 9th

Hello Everyone:



It's been awhile since this has been updated, but nothing new has really happened. We went camping the other week and that was great. All the public schools were still going on so we had the park to ourselves pretty much (five other trailers maybe). It was very relaxing and the weather was good. I've been on steriods to build my body up before they start any treatments. Pete was afraid I'd be a bit more "buff" than him but I told him I was built well enough and he should be more worried about the goatee I was going to grow instead - I might just become more handsome than him! The steriods give you a lot of energy and you stay up almost the whole night. I was on them for four days in a row (40 of them in four days) and than you have nothing for four days and I would just crash. No energy, sleepy and very grumpy too. I didn't even want to hang around with me anymore! The happened for three sessions. The only time I did't crash was when we were camping. The doctor didn't tell me I would go up and down like that so I thought it was just me being a lousy cancer patient before any real treatments even started. It was a bit discouraging but a lady from church went through cancer four years ago and told me it was the drugs. I was glad to hear that! I'm now finished with the steriods (last Thursday) so I've been tired. Mornings are good and I have energy but as soon as lunch is done I need a nap. Just last week they started a scheduled with the ladies from church to come and help with some of the housework and to bring some meals and help with the kids when I nap. The kids have been doing a great job of helping me and doing chores but now that doesn't have to be their whole summer. The thing is I never know how I'll be until I wake up - everything is so unpredictable - and that's why the ladies made themselves available. It's great to have so much support from everyone because I couldn't do it all alone. A lot of the time my days are up and down. Sometimes I'm at peace with everything and know where my help comes from but there are days where I feel God is far away. I think a lot of that comes from not knowing what's going on, or when treatments start, or when I go to London.

Love,
Sharon,Pete and kids