Hello again:
I don't know if anyone is still peeking in on this blog, but here we go again. Last Wednesday I had another bone marrow biopsy. On my doctor visit last month my blood test showed some cancer cells floating around. The doctor wasn't sure if these cells were left overs or if the cancer is back - the only way to find out is by doing a biopsy. On Wednesday I went to Owen Sound hospital kinda dreading the situation. It's a 15 min procedure, but it can be a bit uncomfortable - it has a couple of seconds of intense pain once they are in the middle of your bone. The doctor asked if I was alright and I answered "yes, but I'm not looking forward to it". He than wanted to give me a pill for under my tongue to settle me. I told him I was fine and didn't want anything except for it to be done.
Like last time, the doctor rubbed some gel on the hip (on the right side between the butt and the back - almost feels like your lower back) and then the needle to freeze the area up in a few spots. After comes the thick needle that gets inserted into the bone. I felt a lot of pressure and then the pain comes when they extract the marrow. Last time I remember it hurting a lot more so when the pain was there I thought it's going to hurt more in a few minutes, but when I look over my shoulder the marrow was already going into the sample jar full of solution. It was over and wasn't nearly as bad a I thought it would be. All said and done it's not a procedure to worry about, it's just uncomfortable, mind you it wouldn't be on my list of top ten things to do on my day off!
The lab tech asked if I wanted to see the marrow. I always want to see things that happen to me or come out of me just because it's my body and I'm interested. The marrow was a red "stick" about an inch and a half long and as thick as a Q-tip stick. It gets sent off to Toronto were it gets tested. When the marrow comes out it also comes with blood that has "floaties" in it that get tested as well. Normally you get results in 2-3 weeks, but there is a back log of 4-6 weeks. This time around I'm not worried about it, what will be will be. I have been through it before and know what to expect. Also last time around the doctors did the basic treatment on me and it worked. Apparently they have many "goodies" out there that they haven't even tried on me yet. So in the meantime I plan to enjoy this summer.
Next Tuesday I go to the hospital to have a tube down my throat. In the beginning of the year I would occasionally have trouble swallowing liquids. I ended up doing a swallow test where I first had to swallow "liquid chalk". It was very disgusting and I almost threw it up over their high tech equipment! According to that test all looked good, but Tuesday is just a precaution follow up. They figure I may have a bit of scar tissue on my esophegus because of the radiation I had last July. I haven't had problems swallowing since that last test, so I'm not too worried about it.
I think the last time I wrote was in December when all my treatments were done and it was just a matter of resting. Things have been going pretty good - I still nap 3 or 4 times a week. I go to the Owen Sound hospital once a month for blood work and an IV to help the calcium floating around in my blood to stick to my bones. I have to do the IV for about 2 years - I've already done a good half year of it already. The doctors will keep on eye on the calcium because they don't want to give me too much of the drug, but they don't want to stop it too early either. This drug is good for all my bones of course, but the jaw bone is made up differently. The drug actually weakens the jaw. In the beginning of the year I had a toothache and went to my regular dentist. Once the dentist hears about the IV drug they back away from the situation in a real hurry. The jaw becomes so brittle that a root canel can snap a piece of your jaw off just like that. My dentist starts referring me to another and the oncology clinic stops my IV for a least 2 months prior to any denatl work. London hospital has its own dental unit for cases like myself and I figured I'd rather go to the London hospital where the dentists are familiar with the IV drug than go to some nervous local dentist. Pete came with me and the dentist did some X-rays that showed my teeth were fine except for a wisdom tooth pushing up against a back molar. The good news was that no work needed to be done to my teeth, the bad news was that they can't take out my wisdom teeth. It's too dangerous. Not only that, the dentist said 2 months isn't nearly long enough to be off the drug to be doing dental work. He said even if I stopped my IV now, the drug would be in my system for 6 years still! It's amazing what drugs do to you.
Speaking of drugs, I stopped my pain pills in April. Actually I ran out of them over the Easter weekend. I was supposed to be weaned off them, but once the weekend was over it had been 4 days already and my symptoms were minimal. By the time I got into see a doctor it had been 2 weeks and I was feeling great. I painted the office at work for Pete, weeded the garden and starting vacuuming again. After the two weeks were up it hit me. I was completely exhausted, napping every day - sometimes twice! I didn't have energy for anything and it hurt to do anything. The pain pills I was on were time released - I took one in the morning that lasted all day and one again at night that took me till the morning. I also had a break through pill that when things got real sore I could just pop one and within about 2 mins I was feeling relief for about 3 hours. Now I was on nothing and my body was in withdrawal. I would get the sweats on and off and be a bit restless, but the biggest thing was being totally exhausted. I wasn't sleeping properly at night so I started taking a sleeping pill and one break through pain pill just to take the edge off and give me a good night's rest. What a difference a nights sleep makes! Anyway, I wasn't getting much done in the house, I still had to get the kids back and forth to school on time (it was amazing that the kids even made it some days), supper was always a last minute effort - sometimes late and than the homework that always comes near the end of the year. I wasn't really keeping up and I had a lot of guilt with that. I didn't want to ask for help because others had the same things to do at their own homes, but after a couple weeks I almost asked for meals again (just for days that were too much). I had guilt about not keeping up and being so tired and some even asked if I was depressed (my mood was always ok). I said "I don't think so, but things are depressing. Is that the same thing?" Just as quick as the tiredness hit, it also went away. That was 6 weeks later. I still have pain in my back and hips, but I'm not on pain killers all day, so I have to take it easy. In a way it's a blessing in disguise that I'm off the pills. When I was on them I was always going full throttle, but didn't feel anything. Now that I'm off, I have to listen to my body and it isn't near to being healed. On the pills I was just abusing my body beyond it's limits and I probably prolonged it's healing. A personal trainer told me that my body will heal faster and truer to itself off the pills (something about the nerves being used to all the pain killers). Now I struggle a little with the things I can't do because my body can't handle it all. I have always been active so this is just something that will take time to adjust to - not always easy. I'm getting a good taste of what the elderly go through - and that is an eye opener! If I get into a rut of thinking of what I can't do I have to turn it around and think of what I can do and hopefully over time (maybe years) I will be able to do more.
My body also went through other things that tied in with the tiredness. I have a lot of memory gaps. I can be talking and than not know what I was saying. Sometimes I really have to think about someone's name - even if I know them. My brain can't handle too many things. For example the last 2 weeks the kids have had swimming lessons every morning and then they would have soocer at night. Doing that and having a nap in between was enough for me to think about. Such simple things - but it takes a lot of mental energy. Swimming is done, so life should be a bit easier now. A visit to the family doctor last month cleared up some things. Apparently I'm in menopause - that would explain the sweating and memory (the doctor said it's going to get worse). He also said that tests done at the hospital showed I probably wouldn't be able to ever have another baby. I had been taking a few pregnancy tests over the spring months - only to be negative. I had been so tired and my cycles had stopped, even the oncologists were doing some pregnancy tests on me. I was also told I might need my immunizations done again since chemo killed everthing off in my body. Lastly I had to get a full body x-ray done since that hadn't been done after my transplant (apparently that's mandatory - with a biopsy - that now is done). I told the doctor that I didn't believe in x-rays anymore since it couldn't find my cancer, but he said they needed it for their records. After about 15-20 x-rays (limb by limb) I told them that they now had a nice photo album of me! Anyway, that is a lot of changes to my body in a couple of months.
I'm pretty sure everything is up tp date again. I try to be organized in my day so that by afternoon everything is done (supper too) in case I need a nap. The kids are home and they are a great help, but I always hear them when I try to nap! We camped the first week out of school and it was so relaxing - my body didn't even hurt as much! We plan to camp some more.
I hope to update you again after Tuesday, but sometimes the idea of sitting here typing can be a lot to think about and my back does get sore sitting over a keyboard. No promises on being too regular, but I'll do my best.
Take care and thanks for the on going prayers!
Love Pete, Sharon, Natasha, Heather & Shaun
Saturday, July 11, 2009
Thursday, December 11, 2008
I'm back!
I probably shouldn't have left you all hanging with that last blog because many think I'm still dog tired and not up to much at all. I am getting better. I forgot to mention in my last blog that after my transplant I also had a platelet transfusion (because I had low platelets). While the transfusion was dripping through my IV I noticed it wasn't my blood type. I mentioned it to the nurse but they told me it wasn't the "whole" blood, only the platelets and not to worry. Good thing because the bag was half empty already. I also had a high fever the whole time I had the runs and the nurses were always trying to bring it down. I told them I didn't feel like I had a fever - they were amazed at that.
Anyway six days after coming home I had to go back to London for a check up. I did blood work and an hour later the results were in. I'm always amazed at how fast they get the results because the cancer floor alone deals only in blood work for results and there are hundreds of people coming in a day doing blood work. In the appointment with my doctor they said my blood work was good and the white cell counts were the same as any healthy person. A normal white count is between 4 and 7 1/2. Mine count was 7.2. They said I was normal and could fight off a cold like any other person. I said, "what's normal, cancer free?". They said "we can't guarantee that we got every cancer cell". When I got home I told Pete and the kids that I was normal. The kids cheered and asked if they could tell their teachers for prayer request. I said ,"no not yet, it all seems a little fast". Two days later I went to my family doctor and asked what normal meant. All he said was only God knows if the cancer is going to come back. I know that too. He also said I didn't look skeletal like some of his other cancer patients coming out of the hospital. I said "I know I thought I would lose a lot of weight too, so I ate a lot before going into the hospital that way I could live off body fat for about a week in case I lost my appetite". He just laughed and suggested I write a book, it would be quite funny. I was still hesitant about telling people that I was normal because I wasn't sure myself if that meant remission yet or not.
Two weeks after coming out of the hospital I went back to London to get my permcath taken out. A friend brought me and it was only going to take about half an hour. I was brought into a room that looked like a recovery room with four beds along each side. I was told the doctor would be coming soon. When the doctor came I asked if he could talk me through the procedure. Next thing I know the nurse closes the curtain around us and we are all ready to take this thing out! I said, "we are doing this right here?". When I had the permcath put in there was stainless steel all around me with bright lights and a multitude of monitors. Now there was a little bed with a beige curtain wrapped around the nurse, doctor, me and a small tray of tools! Talk about being nervous! The doctor was getting ready to start when I thought to bring up the topic of freezing. He said, "this permcath has been in for four weeks so there is a possibility that tissue may have grown around the tube in my chest. If it's tough to pull out than we'll come in with heavy freezing". I said, "hey, I know, let's do the freezing right now". The doctor just rolled his eyes like I was just prolonging everything. Finally he said,"fine, but it's really going to prick you and than sting like crazy". I thought, alright - at least I know what to expect. After bathing my chest in the famous pink iodine he came with the needle to freeze me. I felt a small prick and nothing else. He gave me three needles on one side of the tube and three on the other side and actually pointed it straight down! I thought there has got to be a lung there or something vital down there, but all was well. The doctor had an expression like I should be in pain, but I have had more needles in my life - the way he talked I figured it would be something to worry about. Anyway, I just looked at a spot on the ceiling and the doctor starting pulling on the tube (he forgot to take out one of the stitches). I felt a lot of tugging and pulling again. Every time it got a little stuck he came with a little scalpel and then started pulling again. I wondered how anyone would do this without freezing. When it finally popped out it made a suction noise and gushed with blood. The tube still held the shape of a "j" (from going over the collar bone). The doctor left and the nurse stayed and kept pressure on the wound. It looked like a bullet hole, mind you I've never been shot before. It bled through the bandage, so I had to have a big dressing on it. A week later it closed (no stitches) and now I'm left with a scar. Finally I can take a normal shower without having to wrap in Saran wrap!! Such simple pleasures we take for granted.
On November 10 I went to the hospital in Owen Sound for my monthly IV. That is the drug that takes the calcium floating around in my blood and sticks it to my bones again. After the IV I met with my oncologist and talked about how things were going since leaving London. My bones had been hurting again especially in my hips and lower back. I didn't have bone pain for two weeks before London and the first week in the hospital - I felt great, but now the pain was back again. I wasn't too worried though because I knew the chemo was going to eat away at the marrow in my bones. The way I figured it all was that the pain would only be temporary. The oncologist didn't like that I had pain as bad as I was saying. I would wake every hour because my hip would hurt and than I would have to roll over again for about an hour until I would wake up from the pain of the other hip. This would go on all night. She gave me some break through pills for the pain. She also thought it could be from the chemo and wanted me to keep an eye on the pain for the next month. I asked her what normal meant - did it mean I was in remission? She looked at me and said, "you've been in remission since September". I guess it was the steroids that took care of that. She said we couldn't harvest you if you had been full of cancer! Makes sense I guess, but maybe they could have mentioned that a couple months ago. So it's official - I'm in remission! I asked the oncologist if there were any other types of steroids and she said "not really". I said "steroids aren't really good for relationships" (they made me very moody- lots of ups & downs). She told me she knows they are awful, she has a patient who just tried to commit suicide. She also said my body did well with just the basics (steroids & transplant) and that we haven't even gotten into the "goodies" yet. There are so many drugs we haven't tried and if the cancer does come back than I might even be able to have another transplant because I'm so young. Anyway there are still options, it sounded encouraging.
At home I still get help everyday, but now I join in with the chores where possible. We get meals every other day and Pete still drives the kids to school in the morning. He has been plowing lately, but still manages to come home for the kids. We have lots of snow up here and already one snow day.
Next week already I go for my monthly IV and the first week of January I go to London for a check up with the radiation doctor. That is just to see if the pain has gotten better or if I need more radiation anywhere. From now on I get checked every three months with blood work and MRI's to see if I'm still healthy. As time goes on the appointments get further between.
Anyway I should go now, the kids are home. Thanks for the continued support from every one in every way.
Love from Pete, Sharon, Natasha, Heather & Shaun
I probably shouldn't have left you all hanging with that last blog because many think I'm still dog tired and not up to much at all. I am getting better. I forgot to mention in my last blog that after my transplant I also had a platelet transfusion (because I had low platelets). While the transfusion was dripping through my IV I noticed it wasn't my blood type. I mentioned it to the nurse but they told me it wasn't the "whole" blood, only the platelets and not to worry. Good thing because the bag was half empty already. I also had a high fever the whole time I had the runs and the nurses were always trying to bring it down. I told them I didn't feel like I had a fever - they were amazed at that.
Anyway six days after coming home I had to go back to London for a check up. I did blood work and an hour later the results were in. I'm always amazed at how fast they get the results because the cancer floor alone deals only in blood work for results and there are hundreds of people coming in a day doing blood work. In the appointment with my doctor they said my blood work was good and the white cell counts were the same as any healthy person. A normal white count is between 4 and 7 1/2. Mine count was 7.2. They said I was normal and could fight off a cold like any other person. I said, "what's normal, cancer free?". They said "we can't guarantee that we got every cancer cell". When I got home I told Pete and the kids that I was normal. The kids cheered and asked if they could tell their teachers for prayer request. I said ,"no not yet, it all seems a little fast". Two days later I went to my family doctor and asked what normal meant. All he said was only God knows if the cancer is going to come back. I know that too. He also said I didn't look skeletal like some of his other cancer patients coming out of the hospital. I said "I know I thought I would lose a lot of weight too, so I ate a lot before going into the hospital that way I could live off body fat for about a week in case I lost my appetite". He just laughed and suggested I write a book, it would be quite funny. I was still hesitant about telling people that I was normal because I wasn't sure myself if that meant remission yet or not.
Two weeks after coming out of the hospital I went back to London to get my permcath taken out. A friend brought me and it was only going to take about half an hour. I was brought into a room that looked like a recovery room with four beds along each side. I was told the doctor would be coming soon. When the doctor came I asked if he could talk me through the procedure. Next thing I know the nurse closes the curtain around us and we are all ready to take this thing out! I said, "we are doing this right here?". When I had the permcath put in there was stainless steel all around me with bright lights and a multitude of monitors. Now there was a little bed with a beige curtain wrapped around the nurse, doctor, me and a small tray of tools! Talk about being nervous! The doctor was getting ready to start when I thought to bring up the topic of freezing. He said, "this permcath has been in for four weeks so there is a possibility that tissue may have grown around the tube in my chest. If it's tough to pull out than we'll come in with heavy freezing". I said, "hey, I know, let's do the freezing right now". The doctor just rolled his eyes like I was just prolonging everything. Finally he said,"fine, but it's really going to prick you and than sting like crazy". I thought, alright - at least I know what to expect. After bathing my chest in the famous pink iodine he came with the needle to freeze me. I felt a small prick and nothing else. He gave me three needles on one side of the tube and three on the other side and actually pointed it straight down! I thought there has got to be a lung there or something vital down there, but all was well. The doctor had an expression like I should be in pain, but I have had more needles in my life - the way he talked I figured it would be something to worry about. Anyway, I just looked at a spot on the ceiling and the doctor starting pulling on the tube (he forgot to take out one of the stitches). I felt a lot of tugging and pulling again. Every time it got a little stuck he came with a little scalpel and then started pulling again. I wondered how anyone would do this without freezing. When it finally popped out it made a suction noise and gushed with blood. The tube still held the shape of a "j" (from going over the collar bone). The doctor left and the nurse stayed and kept pressure on the wound. It looked like a bullet hole, mind you I've never been shot before. It bled through the bandage, so I had to have a big dressing on it. A week later it closed (no stitches) and now I'm left with a scar. Finally I can take a normal shower without having to wrap in Saran wrap!! Such simple pleasures we take for granted.
On November 10 I went to the hospital in Owen Sound for my monthly IV. That is the drug that takes the calcium floating around in my blood and sticks it to my bones again. After the IV I met with my oncologist and talked about how things were going since leaving London. My bones had been hurting again especially in my hips and lower back. I didn't have bone pain for two weeks before London and the first week in the hospital - I felt great, but now the pain was back again. I wasn't too worried though because I knew the chemo was going to eat away at the marrow in my bones. The way I figured it all was that the pain would only be temporary. The oncologist didn't like that I had pain as bad as I was saying. I would wake every hour because my hip would hurt and than I would have to roll over again for about an hour until I would wake up from the pain of the other hip. This would go on all night. She gave me some break through pills for the pain. She also thought it could be from the chemo and wanted me to keep an eye on the pain for the next month. I asked her what normal meant - did it mean I was in remission? She looked at me and said, "you've been in remission since September". I guess it was the steroids that took care of that. She said we couldn't harvest you if you had been full of cancer! Makes sense I guess, but maybe they could have mentioned that a couple months ago. So it's official - I'm in remission! I asked the oncologist if there were any other types of steroids and she said "not really". I said "steroids aren't really good for relationships" (they made me very moody- lots of ups & downs). She told me she knows they are awful, she has a patient who just tried to commit suicide. She also said my body did well with just the basics (steroids & transplant) and that we haven't even gotten into the "goodies" yet. There are so many drugs we haven't tried and if the cancer does come back than I might even be able to have another transplant because I'm so young. Anyway there are still options, it sounded encouraging.
At home I still get help everyday, but now I join in with the chores where possible. We get meals every other day and Pete still drives the kids to school in the morning. He has been plowing lately, but still manages to come home for the kids. We have lots of snow up here and already one snow day.
Next week already I go for my monthly IV and the first week of January I go to London for a check up with the radiation doctor. That is just to see if the pain has gotten better or if I need more radiation anywhere. From now on I get checked every three months with blood work and MRI's to see if I'm still healthy. As time goes on the appointments get further between.
Anyway I should go now, the kids are home. Thanks for the continued support from every one in every way.
Love from Pete, Sharon, Natasha, Heather & Shaun
Tuesday, November 25, 2008
Hello Everyone!!
It has been awhile since the last blog - almost a month! Who knows if anyone is still looking for updates, but some have mentioned lately that they keep peeking once in awhile. I kept telling Pete that I would get to it, but I still get tired easily (mentally too). Well, here I am and getting stronger everyday - there is still a long ways to go though.
On Oct. 15 Pete and I went to the hospital in London. It was chemo day and I must say once we were there I was getting a bit nervous. Like a lady from church here said to me "It's one thing to take drugs knowing that they are going to make you better, it's another thing to take drugs knowing its going to kill everything in your body!" That was exactly how I felt. You are allowing someone to put this "poison" into you, and its going to slowly seep through your body and even into your BRAIN and there is nothing you can do to stop it. What a feeling. My isolation room wasn't quite ready yet so I was put in a ward for the time being. Later they wheeled me into my room. The isolation area was behind the nurses station. There was a big heavy door that led into a hand washing room/file room. Off of this room were three other small rooms, one for each cancer patient in isolation - I had the end room. Once in my room they came in with the chemo bag for my IV. This bag was not very big at all and it looked like water - so innocent looking! The IV went into my permcath which hangs out of my chest and it dripped for 35 mins. That was it. A high dose chemo done in half an hour and I was done with my chemo treatments, how strange when many others have chemo for months! Then the waiting started. I wondered when I would feel it, but I felt fine. I actually went out for dinner that night. The next day was good and the day after too. The 17th I had my transfusion. I was quite eager for this day because I wanted my harvest to start chasing after the chemo that had a two day head start! The doctors kept telling me I had a great harvest so that was even better in my eyes. I was disappointed though when I found out they had mixed my harvest with someone else's blood to dilute my stem cells. The nurse said "Sorry, is that a problem?". I said "Isn't it a little late now?" I took the transplant obviously, but later a doctor told me it wasn't about mixing up some one's blood with my blood. Stem cells are different than blood, blood can be broken up (cells, platelets etc.) and used for different reasons. This person's blood was my type but just there to dilute my stems cells which can be quite "sticky" and get stuck in the lines. The doctor's wanted to make sure every single stem cell of mine made it back into my body. Anyway, I ended up learning a lot about blood in London. I still felt fine and the nurses encouraged me to walk the halls as much as possible, to keep your muscles moving and strong. I asked when is the chemo going to hit me? They said by the following Wednesday (this was Friday).
Pete came on Sunday with kids. They came around noon but weren't allowed in my room because the girls had a bit of the sniffles. So I went out. They have a family lounge room just down the hall from the nurses station. At first Shaun was a little quiet. He was seeing if his mom was still OK or if maybe I was different now with the chemo. It didn't take long before he was saying "Hey mom, guess what happened at school?". The girls seemed alright with everything. It was still me and I still had hair, I was just a bit tired. Later the family took me outside for some fresh air in a wheel chair. I think Pete picked an old relic - I don't even think there was rubber on the tires!! Each of the kids took turns pushing me, I'm sure we hit every curb and bump on the grounds. After we went in and the nurses gave the kids pop and ice cream and pulled a TV into the family room and we watched a movie together. Just before they left at 5 I asked Pete to take the kids real quick to my room. This way whenever we would call each other later on in my stay the kids could picture where I was.
The following days I noticed I was getting a little more tired each day, other than that I was still good. The only problem I had was thinking "OK three more days till Wed., now two more days till Wed etc". Finally it was Wednesday morning and I was still alright. Pete came to see me that day, but after he left everything hit me. I was very tired and my appetite had been slowing down. It felt like I had a real bad flu. The "icing on the cake" was getting the runs though. The nurses wanted a sample to run down to the lab to see if it was an infection or just the runs. Then they would know how to stop it - with antibiotics or just a couple of pills. The next day I was told the lab didn't test for the right things so I had to give another sample. I wasn't walking the halls anymore for exercise but there was no doubt in my mind that I was getting a workout. I ran to the bathroom steady. Every time a nurse came in I would ask "Any news from the lab yet?". The answer was always "No". I thought how could this get any worse - it had been two days! I soon found out. I was loosing too much fluid so they hooked me up to IV. Now I was running to the bathroom with an IV pole that had 5 wheels each going in different directions! By this point I wasn't eating at all anymore. Every time I had to take my pills (morning & night) I would throw them up as soon as they hit my stomach. Most of my pills have to be taken with food. Since I couldn't take most of my pills I had to take them all through my IV except two. The next day still no news about the lab results. Now I was getting a little angry. Just because the nurses forgot to tell the lab what to test for the first time I'm still having the runs with no treatment for it in sight. I asked "Can't you put a rush on my sample, it's been three days!" They couldn't. Just when I thought it couldn't get any worse, it did. Now the nurses wanted to see how much fluid I was loosing, so they put two "hats" (buckets) in the toilet to catch everything. My dilemma now was where to put the toilet paper. I know this is probably gross, but this was my situation. After three and a half days of cramps and throwing up in the garbage (because I had to sit on the toilet for the other end) the lab results came back. I had C-def (an infection in the bowels or intestines). Everyone has this C-def in their bodies, but with my white count being down I couldn't fight it off. I was put on antibiotics and by the end of the day the runs were done.
I had become very weak loosing all that fluid and not eating anything for a couple days. The food tray would come in and I'd try to eat something, at least to get my strength back, but most often I would ask them to take the tray right back out because the smell made me want to throw up. Water was my drink and ginger ale became my "food" (it sat heavier in my stomach than water). I had a few mouth sores, but nothing to speak of, they didn't hurt. I was just very weak and very tired. The nurses are great and always ask "Is there anything we can get you or do for you?" I asked if they called husbands. The answer was yes. I couldn't even phone home I was so weak. For four days they called Pete or Pete would call the hospital for updates. Being 3 hours away didn't help much for Pete or the kids, they couldn't just pop over for a second, so they had to depend on what the nurses were telling him. I was very weak so even filling my cup with water or changing the toilet paper roll was a chore and very exhausting. In the other two isolation rooms there was always family there helping the patient, I had to do everything for myself and maybe that helped me in recovering quicker than usual. During my stay I was also loosing my hair. My scalp was very itchy from the chemo and every time I scratched it I would have 5-10 hairs in each hand. I scratched a lot. Also my bed and especially my pillow had looked like a dog had just shed it's hair in there. Once I got past the runs a nurse came in with the razor and took my hair down to the scalp. It felt very refreshing after all that itching. I recommend a buzz cut to everyone (at least try it once in your life!). At first I looked like my brother Albert. I told him he had a twin. He said, "Everyone wants to look like me". I told him "It cost a lot of money, but it was worth every penny!".
In my room the nurses hung a chart that listed all the results from my blood work. Every morning between 4 and 6 the nurses would come in and take a couple tubes of blood and flush out my permcath (to prevent blood clots). By breakfast the results would be posted on the chart, just like a report card. Of course the only section I (or any cancer patient) was interested in was the white cell count. When I first came to the hospital they were exceptionally high because of the drugs I took with the needle in my stomach. With each day after chemo the count would drop. It had to get to .05 and that is how low the computer could read it. It stayed at that number for maybe four days (everyone is different) and than it started to climb as I got better. It was when mine was so low that I couldn't call Pete or eat my food and was very weak. Once it started to climb it was going up a full number each day. I was trying to walk the halls to get my strength back and eating my food (even if it was only three bites of soup). The nurses were impressed how fast it was going that on Tuesday a nurse said you might go home soon, maybe on Friday. By Tuesday night they said I could probably go home the next day! I call Pete to see if he could pick me up. It was short notice for him and he had to plan his day. The next morning the doctor came in and said I could go home. I stayed till dinner time Wed. so Pete could get some work in. At 9:00 pm I was home! It worked out well that the kids had Thurs. & Fri. off and happened to be invited to some cousins houses. This way I could rest (they didn't know I came home till after they came back Sunday night).
Since coming home I have become stronger everyday. At first I would get out of bed and get a bowl of cereal and right away lie down on the couch all weak and shaking. Or after a quick shower I would jump back in bed before I could get dressed because it felt like I would faint. Now I can set the table, put dinner in the oven (which someone kindly made), eat and maybe help clear the table. Then I'm finished. Actually last Wednesday I had a shower, shaved my legs (no, that hair didn't fall out), tried off , dressed and than ran to the couch while saying hello to the helper from church on my way by. Such simple things, but major improvements to me. I even managed to make one service the past two Sundays, mind you I cling to Pete when we have to stand. It's one thing to be up and move around, it's another when you just stand. After church I talked to people, but than all of a sudden it hits me and I have to go and sit in the vehicle. Last Sunday I was starting to sweat because all of a sudden it's too much. I also wear my wig (the only times I've worn it, usually I wear a winter hat at home or go bald) which Pete likes. Actually I get a lot of compliments on it - it makes me look foxy! It colour is called "cherry cola", it's dark hair with cherry red in it. It comes to my jaw line and it's straight hair. It's the only day of the week I dress up - maybe that's why Pete likes the look. Usually I'm in comfy lounge clothes at home.
By the way most of the hair on my head fell out (lot's since coming home - especially after my showers) and some of my eye lashes (more from my right eye - not that you could tell), I was afraid to use my mascara thinking the hair would all stick to the wand! My arm hair hasn't budged - of course. My leg hair didn't fall out either, so Pete kindly asked that I maybe shave it some time. So I did and since than (a week ago) nothing has grown back.
Anyway, there is more to tell since coming back, but I'm going to make this blog a "to be continued" blog because I'm getting tired and my back is getting sore. I'll try to get back on tomorrow.
It's amazing the amount of mail I've gotten. I bought a big card box and It's over flowing!! Plus a ton of emails have come either to the hospital or here at home. The nurses were impressed at my mail flow. Anyone who mailed me in London and wonders whether I got their mail after I left for home, it's all being forwarded here - still to this day! I also have meals coming regularly and a helper comes every morning Monday - Friday. We are all definitely being taken care of and none of it is taken for granted. All of you have been amazing to us through the past months. We couldn't have done it without all of your ongoing support in all of your own ways. Thank you!!!
To be continued.....
Love Pete, Sharon, Natasha, Heather & Shaun.
It has been awhile since the last blog - almost a month! Who knows if anyone is still looking for updates, but some have mentioned lately that they keep peeking once in awhile. I kept telling Pete that I would get to it, but I still get tired easily (mentally too). Well, here I am and getting stronger everyday - there is still a long ways to go though.
On Oct. 15 Pete and I went to the hospital in London. It was chemo day and I must say once we were there I was getting a bit nervous. Like a lady from church here said to me "It's one thing to take drugs knowing that they are going to make you better, it's another thing to take drugs knowing its going to kill everything in your body!" That was exactly how I felt. You are allowing someone to put this "poison" into you, and its going to slowly seep through your body and even into your BRAIN and there is nothing you can do to stop it. What a feeling. My isolation room wasn't quite ready yet so I was put in a ward for the time being. Later they wheeled me into my room. The isolation area was behind the nurses station. There was a big heavy door that led into a hand washing room/file room. Off of this room were three other small rooms, one for each cancer patient in isolation - I had the end room. Once in my room they came in with the chemo bag for my IV. This bag was not very big at all and it looked like water - so innocent looking! The IV went into my permcath which hangs out of my chest and it dripped for 35 mins. That was it. A high dose chemo done in half an hour and I was done with my chemo treatments, how strange when many others have chemo for months! Then the waiting started. I wondered when I would feel it, but I felt fine. I actually went out for dinner that night. The next day was good and the day after too. The 17th I had my transfusion. I was quite eager for this day because I wanted my harvest to start chasing after the chemo that had a two day head start! The doctors kept telling me I had a great harvest so that was even better in my eyes. I was disappointed though when I found out they had mixed my harvest with someone else's blood to dilute my stem cells. The nurse said "Sorry, is that a problem?". I said "Isn't it a little late now?" I took the transplant obviously, but later a doctor told me it wasn't about mixing up some one's blood with my blood. Stem cells are different than blood, blood can be broken up (cells, platelets etc.) and used for different reasons. This person's blood was my type but just there to dilute my stems cells which can be quite "sticky" and get stuck in the lines. The doctor's wanted to make sure every single stem cell of mine made it back into my body. Anyway, I ended up learning a lot about blood in London. I still felt fine and the nurses encouraged me to walk the halls as much as possible, to keep your muscles moving and strong. I asked when is the chemo going to hit me? They said by the following Wednesday (this was Friday).
Pete came on Sunday with kids. They came around noon but weren't allowed in my room because the girls had a bit of the sniffles. So I went out. They have a family lounge room just down the hall from the nurses station. At first Shaun was a little quiet. He was seeing if his mom was still OK or if maybe I was different now with the chemo. It didn't take long before he was saying "Hey mom, guess what happened at school?". The girls seemed alright with everything. It was still me and I still had hair, I was just a bit tired. Later the family took me outside for some fresh air in a wheel chair. I think Pete picked an old relic - I don't even think there was rubber on the tires!! Each of the kids took turns pushing me, I'm sure we hit every curb and bump on the grounds. After we went in and the nurses gave the kids pop and ice cream and pulled a TV into the family room and we watched a movie together. Just before they left at 5 I asked Pete to take the kids real quick to my room. This way whenever we would call each other later on in my stay the kids could picture where I was.
The following days I noticed I was getting a little more tired each day, other than that I was still good. The only problem I had was thinking "OK three more days till Wed., now two more days till Wed etc". Finally it was Wednesday morning and I was still alright. Pete came to see me that day, but after he left everything hit me. I was very tired and my appetite had been slowing down. It felt like I had a real bad flu. The "icing on the cake" was getting the runs though. The nurses wanted a sample to run down to the lab to see if it was an infection or just the runs. Then they would know how to stop it - with antibiotics or just a couple of pills. The next day I was told the lab didn't test for the right things so I had to give another sample. I wasn't walking the halls anymore for exercise but there was no doubt in my mind that I was getting a workout. I ran to the bathroom steady. Every time a nurse came in I would ask "Any news from the lab yet?". The answer was always "No". I thought how could this get any worse - it had been two days! I soon found out. I was loosing too much fluid so they hooked me up to IV. Now I was running to the bathroom with an IV pole that had 5 wheels each going in different directions! By this point I wasn't eating at all anymore. Every time I had to take my pills (morning & night) I would throw them up as soon as they hit my stomach. Most of my pills have to be taken with food. Since I couldn't take most of my pills I had to take them all through my IV except two. The next day still no news about the lab results. Now I was getting a little angry. Just because the nurses forgot to tell the lab what to test for the first time I'm still having the runs with no treatment for it in sight. I asked "Can't you put a rush on my sample, it's been three days!" They couldn't. Just when I thought it couldn't get any worse, it did. Now the nurses wanted to see how much fluid I was loosing, so they put two "hats" (buckets) in the toilet to catch everything. My dilemma now was where to put the toilet paper. I know this is probably gross, but this was my situation. After three and a half days of cramps and throwing up in the garbage (because I had to sit on the toilet for the other end) the lab results came back. I had C-def (an infection in the bowels or intestines). Everyone has this C-def in their bodies, but with my white count being down I couldn't fight it off. I was put on antibiotics and by the end of the day the runs were done.
I had become very weak loosing all that fluid and not eating anything for a couple days. The food tray would come in and I'd try to eat something, at least to get my strength back, but most often I would ask them to take the tray right back out because the smell made me want to throw up. Water was my drink and ginger ale became my "food" (it sat heavier in my stomach than water). I had a few mouth sores, but nothing to speak of, they didn't hurt. I was just very weak and very tired. The nurses are great and always ask "Is there anything we can get you or do for you?" I asked if they called husbands. The answer was yes. I couldn't even phone home I was so weak. For four days they called Pete or Pete would call the hospital for updates. Being 3 hours away didn't help much for Pete or the kids, they couldn't just pop over for a second, so they had to depend on what the nurses were telling him. I was very weak so even filling my cup with water or changing the toilet paper roll was a chore and very exhausting. In the other two isolation rooms there was always family there helping the patient, I had to do everything for myself and maybe that helped me in recovering quicker than usual. During my stay I was also loosing my hair. My scalp was very itchy from the chemo and every time I scratched it I would have 5-10 hairs in each hand. I scratched a lot. Also my bed and especially my pillow had looked like a dog had just shed it's hair in there. Once I got past the runs a nurse came in with the razor and took my hair down to the scalp. It felt very refreshing after all that itching. I recommend a buzz cut to everyone (at least try it once in your life!). At first I looked like my brother Albert. I told him he had a twin. He said, "Everyone wants to look like me". I told him "It cost a lot of money, but it was worth every penny!".
In my room the nurses hung a chart that listed all the results from my blood work. Every morning between 4 and 6 the nurses would come in and take a couple tubes of blood and flush out my permcath (to prevent blood clots). By breakfast the results would be posted on the chart, just like a report card. Of course the only section I (or any cancer patient) was interested in was the white cell count. When I first came to the hospital they were exceptionally high because of the drugs I took with the needle in my stomach. With each day after chemo the count would drop. It had to get to .05 and that is how low the computer could read it. It stayed at that number for maybe four days (everyone is different) and than it started to climb as I got better. It was when mine was so low that I couldn't call Pete or eat my food and was very weak. Once it started to climb it was going up a full number each day. I was trying to walk the halls to get my strength back and eating my food (even if it was only three bites of soup). The nurses were impressed how fast it was going that on Tuesday a nurse said you might go home soon, maybe on Friday. By Tuesday night they said I could probably go home the next day! I call Pete to see if he could pick me up. It was short notice for him and he had to plan his day. The next morning the doctor came in and said I could go home. I stayed till dinner time Wed. so Pete could get some work in. At 9:00 pm I was home! It worked out well that the kids had Thurs. & Fri. off and happened to be invited to some cousins houses. This way I could rest (they didn't know I came home till after they came back Sunday night).
Since coming home I have become stronger everyday. At first I would get out of bed and get a bowl of cereal and right away lie down on the couch all weak and shaking. Or after a quick shower I would jump back in bed before I could get dressed because it felt like I would faint. Now I can set the table, put dinner in the oven (which someone kindly made), eat and maybe help clear the table. Then I'm finished. Actually last Wednesday I had a shower, shaved my legs (no, that hair didn't fall out), tried off , dressed and than ran to the couch while saying hello to the helper from church on my way by. Such simple things, but major improvements to me. I even managed to make one service the past two Sundays, mind you I cling to Pete when we have to stand. It's one thing to be up and move around, it's another when you just stand. After church I talked to people, but than all of a sudden it hits me and I have to go and sit in the vehicle. Last Sunday I was starting to sweat because all of a sudden it's too much. I also wear my wig (the only times I've worn it, usually I wear a winter hat at home or go bald) which Pete likes. Actually I get a lot of compliments on it - it makes me look foxy! It colour is called "cherry cola", it's dark hair with cherry red in it. It comes to my jaw line and it's straight hair. It's the only day of the week I dress up - maybe that's why Pete likes the look. Usually I'm in comfy lounge clothes at home.
By the way most of the hair on my head fell out (lot's since coming home - especially after my showers) and some of my eye lashes (more from my right eye - not that you could tell), I was afraid to use my mascara thinking the hair would all stick to the wand! My arm hair hasn't budged - of course. My leg hair didn't fall out either, so Pete kindly asked that I maybe shave it some time. So I did and since than (a week ago) nothing has grown back.
Anyway, there is more to tell since coming back, but I'm going to make this blog a "to be continued" blog because I'm getting tired and my back is getting sore. I'll try to get back on tomorrow.
It's amazing the amount of mail I've gotten. I bought a big card box and It's over flowing!! Plus a ton of emails have come either to the hospital or here at home. The nurses were impressed at my mail flow. Anyone who mailed me in London and wonders whether I got their mail after I left for home, it's all being forwarded here - still to this day! I also have meals coming regularly and a helper comes every morning Monday - Friday. We are all definitely being taken care of and none of it is taken for granted. All of you have been amazing to us through the past months. We couldn't have done it without all of your ongoing support in all of your own ways. Thank you!!!
To be continued.....
Love Pete, Sharon, Natasha, Heather & Shaun.
Thursday, October 30, 2008
October 30th, 2008
Hi Everyone!
Sorry it's been a bit since the last update. I just have a lot on the go, sort a running around like a chicken with it's head cut off! Sunday, I visited Sharon and there was a big improvement, she looked and felt a lot better than the week prior. Monday, I got a call around 4pm from her and she said that the doctor came to see her and said: " If this keeps up, you might go home sooner than later! ". Well, good news, I picked her up last night. She is now at home in Owen Sound. She'll have to go back for some check-ups but some of them can be done in Owen Sound Hospital.
Please do not call her at home at this point, she is very weak and still has quite sometime to recover. Our home e-mail is psoosterhoff@sympatico.ca. The ladies of the church have thing covered to help her out during the day as well as medical care.
The kids and I are just fine and looking forward to a speedy recovery.
Thank you so much for all your prayers for our family, especially for Sharon. " For He is control of All Things"
Love,
Pete, Sharon, Natasha, Heather and Shaun
Sorry it's been a bit since the last update. I just have a lot on the go, sort a running around like a chicken with it's head cut off! Sunday, I visited Sharon and there was a big improvement, she looked and felt a lot better than the week prior. Monday, I got a call around 4pm from her and she said that the doctor came to see her and said: " If this keeps up, you might go home sooner than later! ". Well, good news, I picked her up last night. She is now at home in Owen Sound. She'll have to go back for some check-ups but some of them can be done in Owen Sound Hospital.
Please do not call her at home at this point, she is very weak and still has quite sometime to recover. Our home e-mail is psoosterhoff@sympatico.ca. The ladies of the church have thing covered to help her out during the day as well as medical care.
The kids and I are just fine and looking forward to a speedy recovery.
Thank you so much for all your prayers for our family, especially for Sharon. " For He is control of All Things"
Love,
Pete, Sharon, Natasha, Heather and Shaun
Thursday, October 23, 2008
October 23rd, 2008
Hi Everyone!
Wow! It sure is nice to see the response Sharon is setting via e-mail, young and old. I took the kids to see her on Sunday to show them where their mother is staying, we had a nice visit. Sharon was pretty tired but enjoyed our company and the kids loved it too! I went and visited her yesterday afternoon, she is at her low now .5 and will be like this for 4-10 days, everyone's different, then she will start on the UP hill. She was very tired and she had bad diarrhea, which takes a lot out of her as well. She has not been eating very much either, just the smell of food makes her not want to eat (Not like her at all!), so they started feeding her through IV.
We all continue to pray for a good recovery so that she might soon be in our presence as a mother, wife and a sister to all that love her.
I would like to personally thank you all very much for helping us out. Hats off to all of you mothers out there. You do so much for families in need, as well as your own!
God bless and thank you for your continued support!
Pete, Sharon, Natasha, Heather and Shaun
Wow! It sure is nice to see the response Sharon is setting via e-mail, young and old. I took the kids to see her on Sunday to show them where their mother is staying, we had a nice visit. Sharon was pretty tired but enjoyed our company and the kids loved it too! I went and visited her yesterday afternoon, she is at her low now .5 and will be like this for 4-10 days, everyone's different, then she will start on the UP hill. She was very tired and she had bad diarrhea, which takes a lot out of her as well. She has not been eating very much either, just the smell of food makes her not want to eat (Not like her at all!), so they started feeding her through IV.
We all continue to pray for a good recovery so that she might soon be in our presence as a mother, wife and a sister to all that love her.
I would like to personally thank you all very much for helping us out. Hats off to all of you mothers out there. You do so much for families in need, as well as your own!
God bless and thank you for your continued support!
Pete, Sharon, Natasha, Heather and Shaun
Saturday, October 18, 2008
October 18th, 2008
Hi Everyone!!
So far everything is well with Sharon. She has had chemo on Wednesday and on Friday, they re infused her with her stem cells. She is in isolation and pretty tired but still has good spirits. If you want to send cards to Sharon, the hospital address is:
Sharon Oosterhoff C7-214
Victoria Hospital
800 Commissioners Rd East
London, ON N6A 5W9
She also has e-mail there and probably will not return all e-mails sent to her: sharonoosterhoff@gmail.com
Please do not call the hospital and bug the nurses, they have enough to deal with.You can also call me at 519-374-9911.
The kids and I are fine and making out with everything. Thanks for all your concerns, thoughts and prayers.
Much Love,
Pete, Sharon and kids
So far everything is well with Sharon. She has had chemo on Wednesday and on Friday, they re infused her with her stem cells. She is in isolation and pretty tired but still has good spirits. If you want to send cards to Sharon, the hospital address is:
Sharon Oosterhoff C7-214
Victoria Hospital
800 Commissioners Rd East
London, ON N6A 5W9
She also has e-mail there and probably will not return all e-mails sent to her: sharonoosterhoff@gmail.com
Please do not call the hospital and bug the nurses, they have enough to deal with.You can also call me at 519-374-9911.
The kids and I are fine and making out with everything. Thanks for all your concerns, thoughts and prayers.
Much Love,
Pete, Sharon and kids
Thursday, October 9, 2008
Hi everyone:
Things have been a little busy lately. I have my hair chopped off - almost. We kept some on in case I'm left with a little hair and can "blend" some in with my wig. I don't like my hair like this, I was hoping to get it real short. When my hair starts to grow again I think I'll grow it out. I did buy a wig and now I'm going to be a red head!! Actually it's brown with red highlights and it's a bunt cut just below my jaw. People tell me they like my wig better then my hair cut (so do I). Natasha also got 10 inches cut off her hair to donate to the cancer society. We still have to bring her pony tail away. That was quite a change for her too since she's always had long hair. Now it's just past her shoulders. I also got new glasses. I only need them for driving at night or if I'm in an unfamiliar area and need to see the signs that are far away. I figured I'd get new, updated glasses so that if my eyebrows fall off I can put my glasses on in there place!
The first week of October I had a VON nurse come to the house to give me my Neupogen medication. This medication stimulates my cells for the harvest. She put the needle into my stomach. She had asked me if I was OK with getting the needle there. I just grabbed a handful of my growing "insulation" - a result of my eating habits - and told her to shoot away. The next day she asked if I wanted to give myself the needle. Once the syringe was full I aimed at my stomach and stabbed like a dart (just like she instructed) and it bounced right off my belly! It went in on the second shot. The nurse was actually impressed and said she probably wouldn't come the next day, I could do it myself. The next day all went smoothly. The Neupogen made my bones ache for a couple hours afterwards.
Monday night a friend and I went to London so I could be there early Tuesday morning. I had to fast from midnight on because my permcath was scheduled for 10 am. I was a bit nervous about this procedure because I didn't know exactly what was all involved. The patient before me was supposed to have a 20 minute procedure but it turned out to be 3 hours! You can imagine I was starting to get hungry, it wasn't too bad. They brought me into the operating room and put me on a skinny little table so I asked if the table came with seat belts, the answer was no. Next they put oxygen tubes in my nose, a blood pressure band on my arm, and the heart monitor on my finger. The nurses rubbed pink iodine over my right shoulder and chest (the stuff stains) and paper blankets over my head (which had to be craned to the left) and shoulders. The doctor talked me through the whole thing. Over the bed there was six monitors so the doctor could do the procedures guided by ultra sound and x-ray. I was hoping to watch but my head had to be turned and I had a blanket over my head. The doctor put freezing in the right side of my chest(just above the breast) and another just above my right collar bone. Then he put three 1 cm cuts, one above the collar bone, one just below the collar bone and the other part way down my chest. A tube was inserted in the chest cut and pushed up and over the collar bone and curved back down into a vein right beside the jugular in my neck. I was awake through it all and could feel the pushing, tugging and pulling. There wasn't that much pain - it was bearable. I always expect the worst and than it's never as bad as I think. I was supposed to be in there for about an hour but everything went a lot quicker, apparently I have nice big veins. I wanted to see the tube when the doctor was done but they wanted to bandage it up before germs got in the cuts. When they took everything back off me the last image was still on one monitor. I could see the tube in an upside down "j" and of course my collar bone, ribs and spine. It was kind of neat to see. On the outside all you see is the tube coming out of the skin with two capped three inch tubes off that! No more needles anymore, everything can be done through the permcath. It was over, I could relax again and enjoy a much anticipated lunch! I also had to give myself another Neupogen needle while in recovery. This time I hit a blood vessel, the nurse thinks, because I got a tiny purple bruise. After two hours I could go back to the hotel. Once the freezing thawed it was quite tender. I'm not allowed to get it wet and the dressing gets changed once a week.
At 7:30 Wednesday morning my friend and I went to the hospital for the cell harvest. First I had to give blood (through the permcath!!) to see if I had a good enough cell count to even have a harvest. If the count was below 5 I would be sent home, and I could try again in two weeks. The doctor was looking for a certain cell type, the CD34 . The lab called back and said my count was 83 - so real good! I was hooked up to the dialysis machine which is quite big with lots of dials, tube lines, fluid bags and lights. About four bags had fluid, one had my plasma, another saline, another my harvest and blood thinners combined with calcium in the last one. They rinse my harvest bag clean with my plasma so that when my harvest comes into it - it won't react to any other kind of cleaner. One line takes blood from me and another brings it right back into my body. The machine has layers of tubes in it and a warmer so that the blood I get back is warm again. The machine spins my blood around and takes only the top layer of thin, immature CD34 white blood cells of the immune system. Each time a harvest is made it's only about a tsp amount. Right away after another "tsp" pushes the harvest into the tube so that it makes its way into the bag. I needed to make 18 harvests. You could tell when a harvest was happening because one of the dials would spin around really fast and there was a monitor attached to the machine to tell you. At 1:20 I was unhooked and allowed to go but I had to call back around 3 pm to see if the harvest was good enough. They called me and said the harvest went really well - it was an abundant harvest in their words. Usually people who have had radiation don't make a good harvest, so I've been blessed. Now I wouldn't have to do another harvest on Thursday, we could go home. A social worker took my friend and I up to the 7 th floor where I will be staying next week. She told us things I could bring and expect. She also said visitors weren't really recommended except for some family. Most patients are very tired or not up to visitors and it just puts pressure on them when someone shows up at their door. Also germs are a big issue. All that's left now is the chemo next week and the re-infusion of my harvest. Hopefully its all uphill from there (after some sick time). I'm looking forward to getting the next week done.
Pete's now had some practise at being dad & mom. He even did Shaun's birthday party last Friday. I had another migraine and was throwing up because of it. I called Pete at work and he came to get the van so he could pick up all the kids and take them to the bowling alley. He came home and said "what a work out", I said "welcome to motherhood!". I'm sure he will do fine while I'm in London. There is plenty of back up help too.
Pete and I are going to London next week Tuesday which happens to be our 13 th anniversary. I don't think we will ever forget this one! Fall is my favourite season and it's going to be beautiful this weekend. I'm going to enjoy Thanksgiving before I'm contained to the 7 th floor of a hospital.
Through the past five months though I've been blessed through all of my tests and treatments. Things could have turned out so different, I could have had more side effects, been depressed about things or stuck in bed all the time. All things have gone fairly smoothly and results have been quite positive. So there is much to be thankful for and nothing to complain about (except the steroids maybe - but I've been done them for two weeks!!!). The Lord has been good to me and the family. He has always given me a sense of peace through everything and that's why I'm not worried about next week or what comes after that. The support of everyone has also been a comfort and strength to my family whether by prayers, cards, thoughts, meals, housework, visits etc. It's all been much appreciated. I guess Pete will be writing the blogs to fill you all in on how I'm doing from now on!
As for God, His way is perfect.
All the Lord's promises prove true.
He is a shield for all who look to Him for protection. Ps. 18:30
Have a blessed Thanksgiving weekend and thank you to all for your continued support.
Love from Pete, Sharon, Natasha, Heather & Shaun
Things have been a little busy lately. I have my hair chopped off - almost. We kept some on in case I'm left with a little hair and can "blend" some in with my wig. I don't like my hair like this, I was hoping to get it real short. When my hair starts to grow again I think I'll grow it out. I did buy a wig and now I'm going to be a red head!! Actually it's brown with red highlights and it's a bunt cut just below my jaw. People tell me they like my wig better then my hair cut (so do I). Natasha also got 10 inches cut off her hair to donate to the cancer society. We still have to bring her pony tail away. That was quite a change for her too since she's always had long hair. Now it's just past her shoulders. I also got new glasses. I only need them for driving at night or if I'm in an unfamiliar area and need to see the signs that are far away. I figured I'd get new, updated glasses so that if my eyebrows fall off I can put my glasses on in there place!
The first week of October I had a VON nurse come to the house to give me my Neupogen medication. This medication stimulates my cells for the harvest. She put the needle into my stomach. She had asked me if I was OK with getting the needle there. I just grabbed a handful of my growing "insulation" - a result of my eating habits - and told her to shoot away. The next day she asked if I wanted to give myself the needle. Once the syringe was full I aimed at my stomach and stabbed like a dart (just like she instructed) and it bounced right off my belly! It went in on the second shot. The nurse was actually impressed and said she probably wouldn't come the next day, I could do it myself. The next day all went smoothly. The Neupogen made my bones ache for a couple hours afterwards.
Monday night a friend and I went to London so I could be there early Tuesday morning. I had to fast from midnight on because my permcath was scheduled for 10 am. I was a bit nervous about this procedure because I didn't know exactly what was all involved. The patient before me was supposed to have a 20 minute procedure but it turned out to be 3 hours! You can imagine I was starting to get hungry, it wasn't too bad. They brought me into the operating room and put me on a skinny little table so I asked if the table came with seat belts, the answer was no. Next they put oxygen tubes in my nose, a blood pressure band on my arm, and the heart monitor on my finger. The nurses rubbed pink iodine over my right shoulder and chest (the stuff stains) and paper blankets over my head (which had to be craned to the left) and shoulders. The doctor talked me through the whole thing. Over the bed there was six monitors so the doctor could do the procedures guided by ultra sound and x-ray. I was hoping to watch but my head had to be turned and I had a blanket over my head. The doctor put freezing in the right side of my chest(just above the breast) and another just above my right collar bone. Then he put three 1 cm cuts, one above the collar bone, one just below the collar bone and the other part way down my chest. A tube was inserted in the chest cut and pushed up and over the collar bone and curved back down into a vein right beside the jugular in my neck. I was awake through it all and could feel the pushing, tugging and pulling. There wasn't that much pain - it was bearable. I always expect the worst and than it's never as bad as I think. I was supposed to be in there for about an hour but everything went a lot quicker, apparently I have nice big veins. I wanted to see the tube when the doctor was done but they wanted to bandage it up before germs got in the cuts. When they took everything back off me the last image was still on one monitor. I could see the tube in an upside down "j" and of course my collar bone, ribs and spine. It was kind of neat to see. On the outside all you see is the tube coming out of the skin with two capped three inch tubes off that! No more needles anymore, everything can be done through the permcath. It was over, I could relax again and enjoy a much anticipated lunch! I also had to give myself another Neupogen needle while in recovery. This time I hit a blood vessel, the nurse thinks, because I got a tiny purple bruise. After two hours I could go back to the hotel. Once the freezing thawed it was quite tender. I'm not allowed to get it wet and the dressing gets changed once a week.
At 7:30 Wednesday morning my friend and I went to the hospital for the cell harvest. First I had to give blood (through the permcath!!) to see if I had a good enough cell count to even have a harvest. If the count was below 5 I would be sent home, and I could try again in two weeks. The doctor was looking for a certain cell type, the CD34 . The lab called back and said my count was 83 - so real good! I was hooked up to the dialysis machine which is quite big with lots of dials, tube lines, fluid bags and lights. About four bags had fluid, one had my plasma, another saline, another my harvest and blood thinners combined with calcium in the last one. They rinse my harvest bag clean with my plasma so that when my harvest comes into it - it won't react to any other kind of cleaner. One line takes blood from me and another brings it right back into my body. The machine has layers of tubes in it and a warmer so that the blood I get back is warm again. The machine spins my blood around and takes only the top layer of thin, immature CD34 white blood cells of the immune system. Each time a harvest is made it's only about a tsp amount. Right away after another "tsp" pushes the harvest into the tube so that it makes its way into the bag. I needed to make 18 harvests. You could tell when a harvest was happening because one of the dials would spin around really fast and there was a monitor attached to the machine to tell you. At 1:20 I was unhooked and allowed to go but I had to call back around 3 pm to see if the harvest was good enough. They called me and said the harvest went really well - it was an abundant harvest in their words. Usually people who have had radiation don't make a good harvest, so I've been blessed. Now I wouldn't have to do another harvest on Thursday, we could go home. A social worker took my friend and I up to the 7 th floor where I will be staying next week. She told us things I could bring and expect. She also said visitors weren't really recommended except for some family. Most patients are very tired or not up to visitors and it just puts pressure on them when someone shows up at their door. Also germs are a big issue. All that's left now is the chemo next week and the re-infusion of my harvest. Hopefully its all uphill from there (after some sick time). I'm looking forward to getting the next week done.
Pete's now had some practise at being dad & mom. He even did Shaun's birthday party last Friday. I had another migraine and was throwing up because of it. I called Pete at work and he came to get the van so he could pick up all the kids and take them to the bowling alley. He came home and said "what a work out", I said "welcome to motherhood!". I'm sure he will do fine while I'm in London. There is plenty of back up help too.
Pete and I are going to London next week Tuesday which happens to be our 13 th anniversary. I don't think we will ever forget this one! Fall is my favourite season and it's going to be beautiful this weekend. I'm going to enjoy Thanksgiving before I'm contained to the 7 th floor of a hospital.
Through the past five months though I've been blessed through all of my tests and treatments. Things could have turned out so different, I could have had more side effects, been depressed about things or stuck in bed all the time. All things have gone fairly smoothly and results have been quite positive. So there is much to be thankful for and nothing to complain about (except the steroids maybe - but I've been done them for two weeks!!!). The Lord has been good to me and the family. He has always given me a sense of peace through everything and that's why I'm not worried about next week or what comes after that. The support of everyone has also been a comfort and strength to my family whether by prayers, cards, thoughts, meals, housework, visits etc. It's all been much appreciated. I guess Pete will be writing the blogs to fill you all in on how I'm doing from now on!
As for God, His way is perfect.
All the Lord's promises prove true.
He is a shield for all who look to Him for protection. Ps. 18:30
Have a blessed Thanksgiving weekend and thank you to all for your continued support.
Love from Pete, Sharon, Natasha, Heather & Shaun
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