Hi,

Last Friday my staples came out and everything seems to be okay. The wound is healing up nicely. Still trying to get used to having this thing in my chest. I thought by now (two weeks) it might feel like another rib or something, but it still feels foreign! Maybe when the bruises are gone.

Yesterday I went to Toronto with a friend to see the doctor there for my 6-8 week check-up. My counts are all good and where they should be, so I'm considered in remission again! I will still have to stay on the chemo though which is the part that makes you tired and weak. They don't want to stop the drugs like last time I went into remission, because it will just make it that much harder to fight the disease down again when it comes back. I'll probably be on chemo for two weeks and than off for two weeks - a chance to feel a little like my old self and then energy sapped again for two weeks. We'll see how it goes! Anyway, it was a long day again yesterday, we didn't get home until 10pm! I had a good nap today!!

Other than that nothing here is really changed. I hope to start drama with the gr.7&8's next week. I'm looking forward to that again. Hope you are all enjoying the sunshine and fall temp's!!

Take care, Sharon

Hello,

It's been awhile since my last blog - my apologies but I'm not always up to typing. I went to Toronto with Pete and a friend to see the doctor there. We had to wait awhile but once you are in the office the doctor really takes the time to see you. We were told that another transplant wasn't a good option. If I was to have one I should have done it before starting any other kind of treatment. Now my body is used to the new chemo and if we tried a transplant again my body would probably say "we've done this before, it won't work again". Also I would be getting a stem cell transplant from a sibling which my body would see as foreign and therefore probably try to reject it. The mortality rate for this procedure is 1 in 5 and those who do survive it don't have the greatest quality of life for the first year. It didn't sound that great. Now the doctor's try to treat the cancer with drugs because they can be controlled and combinations can be made. It sounds like the safer more stable way to go. This cocktail of chemo that I'm on right now should hopefully give me a year. Even if I hit remission I'll be staying on the drug. Once my body becomes immune to this treatment I'll go on to another drug until that one runs it's course etc. It could possibly get to the point where I would be trying drugs that have never been used before on people, but by that time I would be willing to try anything. The results would also help for other cancer patients. The good news is the doctor said I could cut back o my steroids - instead of every other day, I only have to take them twice a week.

Pete and I celebrated our 15th anniversary the other week. I asked my doctor in Owen Sound when a good time to take a trip would be. She said this week (Thanksgiving) or the next week. So we booked a trip to BC and took the kids with us. We had an awesome time. It was great to get away from doctors, hospitals, drugs, school and just life here for awhile. We visited my brother and his family and then stayed at Whistler Mountain. What a beautiful place!! It was like being in a bowl with all the majestic mountains surrounding you. It didn't matter which way you looked the mountains were there - what an amazing sight. At night the full moon shone above the mountains, the colours were still on the trees and we had beautiful sunny weather! One day we took a jeep tour to the top of Blackcomb Mountain which was very interesting. We went in the afternoon and by the time we came down the sun was setting - it was gorgeous! We also had a snowball fight at the top of the mountain. The next day we went on a zip line tour through the rain forest. We were all harnessed up and had on helmets - we almost looked professional. The tour was through the treetops that were connected by suspension bridges and walkways. The views over the rocky river below was beautiful. The creation was incredible and you couldn't help but feel God's presence around you - I felt alive!! We had five zip lines to cross and three of them were over the river. On the last one we had the option of going over the river upside down! I took pictures of my family going over one by one upside down. I went last and asked the guide to take my picture when I went over. I think I surprised the family when I came across with my head over the river and my legs in the air!! When would I ever get the chance to try something like that again. It was a rush! It was hard to leave to come home. I would have loved to stay longer. I was starting to feel like myself again (I had been off my drugs for two weeks already) and had a zest for life. I knew coming home meant starting all the chemo and steroids up again. The trip was a great escape for all of us and I would love to go back one day if possible.

We came back from BC on a Saturday night late. Monday I had an all day chemo/calcium treatment at the hospital. Today I went back to get a port -a-cath put into my chest. I was awake for the procedure and the doctor talked me through it. I told him that freezing takes a bit longer to set in in my body. I felt the freezing needle go in and he right away asked for the scalpel. I could feel a lot of the work being done. When the freezing took, it was just a lot of tugging and pulling. I had a quarter size (looks like a small dental floss) piece put in with a tube attached to it on my left side. This tube runs through the vein and goes across my chest to a valve off/beside my heart. This unit will stay in forever. The nurses were having a hard time getting into my veins with an IV and the lab was having a hard time getting through all the scar tissue in my arm to get blood. I've been doing blood work for 15 years now and the scar tissue had finally built up. It was easier for everyone if I just had a port-a-cath. Right now the freezing it staring to thaw and I'm feeling the wounds a bit. I have nine stitches and six staples holding everything closed. Next Friday the staples come out and the stitches will dissolve. I also have to carry around a medical alert card in my wallet now.

I think that updates everything here. There is much to be thankful for - for the most part things are well.

Take care,

Sharon

Hello to all:

Today is a much better day! I went to the doctor in Owen Sound yesterday to start my new cocktail of chemo. The one chemo is the same, but just a slightly larger dose taken by IV. I did notice that when I dragged the IV to the bathroom I felt like I was going to tip over a few times, or was a bit dizzy. With the last treatments I did I sometimes feel dizzy and other times I was fine. The doctors always want you to have a driver for chemo appointments just for that very reason. Anyway, I also had my four hour IV for the calcium in my blood and I did blood work again. So it was a full day at the hospital. Then I was sent to the pharmacy to pick up eight different drugs just to deal with all the side effects of chemo! I take eleven chemo pills once a week on the same day as my IV chemo. Than a drug 12 hours before the oral chemo and than again 12 hours after. The steroids were increased (just when I was going to ask them to decrease them!) but I take them every other day so hopefully there is more of a balance. This way maybe I can control the mood swings and weepiness! There is a bit more feeling of nausea, but I can control that with food (of course) for the most part. I have to take at least one nausea pill a day - doctors orders - and then all the rest of the pills. It almost feels like I'm having a buffet of pills everyday!

Not much else to report. Next week Monday I do the chemo thing again and Tuesday is the visit to Toronto to meet the new doctor. Maybe I'll wait till after Tuesday to write again.

Thanks for all the support and hopefully you are all enjoying the sunshine outside!

Love Sharon

Hello,

Just a quick update, not too much to report. At the end of the month I go to Toronto to meet a new doctor. Tomorrow this doctor wants my Owen Sound doctor to start a new "cocktail" of drugs. I'll still take my chemo and steroids, but they will add another drug to the mix. With this mixture I will only have to go to the hospital once a week instead of twice. I take the drug for three weeks and get the fourth week off. My doctor told me not to count chemo rounds anymore. I will be on this drug plan until a new drug comes out or a new trial comes out.

For the most part I am doing pretty good. No nasty side effects. I am very tired and can feel pretty weak. Some days I have energy to do my stuff and other days I just lay around without much energy. The steroids can make me weepy and a lot of things irritate me. This isn't always nice in the home. I do get mood swings from the drugs and I am fully aware of how I react. I don't always like hanging around with myself. This is why I'm not too excited about being on the drugs for who knows how long. On the other hand, I only go to the hospital once a week for chemo. Hopefully this new cocktail will be good to me. The doctors know that the chemo is doing the job. My counts have dropped considerably which is good news! Much to be thankful for. I look forward to going to Toronto, meeting the new doctor and getting some answers for future treatments.

In the meantime we have been receiving a lot of help. The meals keep coming, ladies come cleaning, people visit and many prayers are going up. Not every day is easy or pleasant, but I still know in Whom my help comes.

Love Pete, Sharon and kids.

Hello everyone!

I have finally gotten a new computer, my other computer has been down since January! Just shows how technical I am. Maybe you've all heard my cancer is back again after a year and a half remission - not a long one for the procedure I went through (they were hoping for around a four year remission - I was hoping for longer because I was young and healthy). Apparently my age is not helping me at all, actually it is worse that I am young. The younger you are when you get cancer the more aggressive it is. The older you are the "better" because it took that much longer for the cancer to appear.

I'll back up a little bit here. I was feeling pretty good in the beginning of the year and was last told my cancer was inactive. So I starting working out again and actually ended up where I used to kick box. I did one night of "light" workout and took it easy - I didn't want to be dumb about anything- I wanted to build up my strength again in case my cancer came back. Then the instructor told me he had started a women's fitness class in the mornings. I joined that instead for three mornings a week. It was a bit like boot camp, but I went at my pace. I had lost so much muscle during cancer that I couldn't run or do push-ups anymore. As time went on I got stronger and stronger. What a feeling - I even started sprinting again. In March my family went to Florida for our vacation and it was a good time, but I started having a bit of pain in my tailbone. I just assumed it was from sitting in the vehicle for so long. Everything is so easy to write off as something else or as nothing at all. I also starting getting some pain in the top of my legs going into the hip joints. At my next doctor visit she order two MRIs, one for the upper spine and neck and the other on my lower spine and hip area. The upper MRI was good, the lower one showed some cuts in the tailbone area. In April I started getting tired more often and the pain in my legs were there on and off. I stopped working out, but I regret none of these workouts. Actually I'm glad I could have the feeling of strength and having my "body back" to how I used to feel even for those short months. Also I am stronger again for this next round of cancer. In May I fell down the stairs on my back. I was extra sore for about a week and a week after that I had another doctor visit so I mentioned my fall. That day the doctor ordered back and hip X-rays. Of course nothing showed up. The end of May I got the flu which turned into a cold. This cold lasted all of June - that should have been another clue. In early June the doctor did another MRI on my left leg at the hip joint. Sometimes it hurt to walk or shave in the shower on one leg - the MRI showed cuts in the upper leg bone. The smaller cuts were 1.4cm and the biggest one was 4cm long. Basically I was told "don't do anything with impact or you'll break your leg". Now I'm allowed to walk, bike and swim - possibly yoga. I have a hard time getting my mind and body to agree on things. My mind feels like I could do anything and my body says "no" to everything! At the end of June I had my next monthly visit to Owen Sound and mentioned my month long cold. I ended up with chest and face X-rays to see if I had pneumonia. It turned out to be a sinus infection and antibiotics cleared that up - I felt like million bucks again. At the end of June my doctor did another bone marrow biopsy because my counts were going up slowly and I couldn't get rid of the common cold and I was getting more bone pain. The results showed my cancer was definitely back. It also took a lot longer to heal from the biopsy. It was very tender for a couple weeks. With the other biopsy's it felt like I had a good kick in the back, but the next day I was fine. Mid July I was sent to London for a second opinion for the type of treatment I would be taking to tackle this next round of cancer. My doctor in Owen Sound was on vacation and said they may start you on treatment right away if they need to. In London I was told my cancer was back and it was aggressive. This was on a Wednesday - by Monday I was starting chemo in Owen Sound. It's good that I can do all this in Owen Sound. Every Monday and Thursday I go to the hospital for chemo and I take the steroids the day of and after chemo. The steroids are the wonderful drugs that give mood swings. I can handle the cancer, but the mood swings of course affect the whole family - not always a pleasant situation. One round of treatment is two weeks of chemo and one week off. I'm into my second round already and have to do 8 in total. This chemo will make me very tired, weaken muscles and affect the nerve endings in my hands and feet. I will have tingling sensations or burning. So far I can't complain about anything. I'm not throwing up, I won't lose my hair this time, the tingling is not too bad and I can still get the kids to soccer etc. I usually have someone come in on Friday's to give me a hand with the house work.

At my last visit to the hospital on Monday there seemed to be a bit of urgency in the doctor. This treatment will only give me a year a remission - at 36 years old that doesn't seem like a lot. The doctor got on the phone with London and they don't know what to do with me. I think the next treatments I get after this may be in Toronto. London isn't aggressive enough and Toronto isn't afraid to do trials and transplants. As bad as it sounds - I'm young and stronger and could probably handle the treatments better than a 75 year. By the time I hit remission they hope to have my next treatment figured out and to start it right away. This means I won't have time to get strong in between. I may have to start swimming! Although my immune system is low and pools are crowded.

Anyway, I'm going to wrap this up. It's been a long day. I hope to keep the updates more regular now that you are up to date! I want to thank everyone for the continued support of thoughts, prayers, cards, cleaning, meals, flowers, help around the house and taking the kids out once in a while. It's all very much appreciated and is felt very deeply by us all.

Love from Pete, Sharon, Natasha, Heather & Shaun.

Hello,

Happy New Year everyone. I had an appointment to go to London the beginning of December, but London kept cancelling on me for different reasons. In a way it was frustrating because I wanted to know what the doctor's were thinking about my cancer, but on the other hand it was a bit reassuring because I must not have been a priority. Pete and I finally went to London on the 5th of January. The doctor went over all my blood tests and MRI's etc. and thought they looked okay - nothing to worry about. He figured any pain I was having wasn't myeloma related but maybe age or being stiff. I have heard the age thing before (and I happened to have cancer), but I don't think 35 is that old - I feel like a spring chicken in my mind! I can't think what else any pain can be related to, I have always been healthy and active. I asked the doctor "What do I tell people when they ask how my appointment went - in English? Do I tell them the cancer is in remission?". He said "You just tell them that your myeloma is inactive". He did do a few more blood tests there in London just to make sure they compared to the ones I had in Owen Sound. When we came home the kids were asking how the appointment in London went and what did the doctor say. I told them my myeloma was inactive and Shaun said "What's that mean?". I told him "My cancer is sleeping!". I guess this is all good news. In the meantime I have been going to Owen Sound for my I.V. again. I had some jealous stares the last time I went because it seems we always have to wait in oncology for our appointments. It was no different for me, but last time I got called in to the chemo room (where all the IVs are put in) there was a man and a lady hooked up looking like they had been there all day already. Next thing they knew the nurse slide the needle into my hand and gave me the bottle of meds to slip into my pocket and I got up to leave. The man and lady both perked up and said "That's it? You get to go already?!". Who knows maybe they'll be getting the bottle next time!

Overall I've been doing pretty good. Sept. to Nov. were pretty busy months and I felt it too. I was tired and sore off and on. December, surprisingly, was a good month health wise. I wasn't tired or too sore, and I was even active. I did about four runs down the hill on Heather's tube, I played a little volleyball on Boxing Day (I must admit I was nervous about that at first) and our family got Wii Sports for gift giving. I tend to do the "lunge" when I bowl, so by the end of Christmas holidays who knows how many squats I ended up doing. I felt the muscles come alive again! The doctor in London didn't seem to mind my activities, but when Pete & I talked to the family doctor he almost had a heart attack. "Tobogganing and volleyball are impact sports! You have to be careful". I told him it felt good and I didn't over do it - when it started to hurt I stopped. He just looked at Pete and said, "You just can't talk to women".

Pete and I enjoyed our get away at the end of October. We did some ATVing and lots of relaxing! Apparently our "live in nanny" for the week did such an awesome job taking care of the kids that when we came in the door the kids said, "You're home already?!". When I found out all the fun things they did with the sitter I said, "How can I compete with that?". It's good to know they had fun too.

At the end of the month the play I've been helping the gr. 7&8's with will be performed. It's been a lot of fun hanging around with them watching them learn and have a good time. It also gives me something to do and enjoy with Natasha. She will become a teenager at the end of this week. It seems hard to believe that Pete and I getting into teenagers already.

Anyway, health wise things are still looking good. That is a lot to be thankful for. I'm still keeping up with my regular house chores and being a mom and wife, plus a few little side events. I don't take on too much and say no to things that in another time I would have agreed too.

Hope you all had a good holiday break and a good start to the new year. There may not be much to tell in the next little while since my health is doing well. That's a blessing.

Thanks for checking in and all your continued prayer and support.

Love from Pete, Sharon, Natasha, Heather and Shaun.

Hello everyone:



Today I spent the day in the hospital to get the results from my last check-up. Today is also Pete's and my anniversary - last year we spent it in the honeymoon suite on the hospital discount in London because the next day was the beginning of my 15 day stay in isolation - how time flies!!



Anyway, I had gone to the Owen Sound hospital near the end of September for my regular IV, but the doctors held off because of a toothache I had. I was also experiencing a lot of pain because I think I had pulled a muscle in my back. It had hurt so bad that at night I could hardly breathe - it felt like a vice grip around my rib cage. I could hardly hold up a pan of beans, drive the van or get out of bed. The next day happened to be my scheduled IV. When they heard my symptoms (which sounded a lot like the symptoms when I was first diagnosed) they wanted to do an MRI just to make sure all was O.K. I had also had some pain in my hips. When I was sleeping one night I had a dream that I was running in a race and came in dead last because my hips hurt. When I woke up, my hips were really hurting! (I was more upset that I lost the race than about the pain I was having in my hips - I had never in my life lost a race where I came in dead last!!) So the doctor sent me straight to X-rays after my appointment. The blood work I had done the month before (the full lab sheet of work) wasn't in yet so I had to wait till this month. That's why the blog was not written yet.



Today my oncologist came back from maternity leave. She was gone since March so it will be nice to have a regular doctor again. My MRI came back showing that everything was looking good on my spine. The X-rays on my hips didn't show anything. I had a tooth filled at the dentist last week, but I'm still having a bit of pain in my jaw bones. The doctor held off with my IV again just in case I go back to the dentist. I told her it feels like the bone hurts - not my teeth. Maybe it's my teeth that are the problem and it's making the bone hurt. It's hard to tell. Last Sunday my jaw was very achy so I massaged it, and while I was massaging I felt a peanut size lump by my right ear. It doesn't bother my unless I touch it. I didn't even know it was there. I mentioned it to the doctor and she thought it could be from the IV drug I take so that was another reason I didn't get the IV. In the meantime my protein and calcium are up, which isn't a good thing but the counts are so small that the lab couldn't even give the oncologist a number. The doctor wants to keep on eye on this so I went downstairs for more blood work to compare to last month's blood work. She said the counts could just be a increase and the next month's could be back to normal again. I also have to go for a CAT scan. They have held off with this test because there is radiation in CAT scans, but after MRI's and X-rays, they want a more thorough picture done. Depending on the results of my CAT scan and blood work, the doctor may send a letter to London hospital as to the next steps. If my counts go down, and the lump shows to be nothing, I'll just continue my regular routine at Owen Sound. Hopefully this makes some kind of sense. Sometimes I walk out of the hospital not quite sure of everything myself. It makes sense while I'm talking to the doctor, but when I have to share the story it comes out different.



Anyway, I'm not too worried. Everyday I continue with my activities and chores and regular routine. I feel pretty good. My pain isn't as bad anymore - I just take it easy. I didn't even play soccer with the adults against the gr. 7 & 8's (so they could prepare for the tournament this Saturday). My mind wanted to, but I listened to my body instead. (It took will power I tell you!!) I also hope to teach the gr. 7 & 8's drama for the next month and a half. I'm looking forward to it!



In the meantime I plan to enjoy my anniversary dinner with the family tonight! At the end of the month Pete and I hope to go on a trip and get away from everything for a bit. Things are going well and I'm looking forward to this trip more than my last year's trip to isolation