CHEMO DAY #8 (the last one???)


So chemo day #8 has come and gone. Nothing exciting to say other than it was the last one, for now. Everything went well. Got in, hooked up and got out. I love the groggy, dazed fellin'. It's good to let go and just go with it. The prednisone sure does wonders on me. Like Dr. Bruce Banner (aka hulk) always says " Don't make me angry, you won't like it when I get angry"...LOL... And boy can I pack away the food being on the meds. Thank god christmas is coming cause I don't think we have enough food around the house....
Not sure when I will blog again. It's a bit of a wait now. I have a CT scan booked over the holidays, a GI appointment in the new year. When all that's done I see my doc. From what I understand now is that I'm not in remission cause I still produce bad cells. I will go on a maintenance drug once every 3 months for 2 years, as long as my levels stay the same. Not sure if and when I would have to start chemo again. But it's a possibility. Have to wait till the new year.

When you go the chemo ward, you see all kind of people. All in different stages of therapy. It can be very sad in some ways. Like myself, some people are so ordinary they look like they are only stopping by to visit someone else. There is a nothing wrong with me kind of swagger. Then we get hooked up and we look so different. Some are there who really need help. For those of you who are not just visiting; Have faith in your doctors and believe that things will change. You will feel better and get over this little bump before you. I would never compare myself to anyone else with this kind of disease other than to swap war stories. I had a tough time but managed to overcome this with a lot help and support from friends and family. Without Colleen and the kids not sure what could have been. We all have it in us to beat and triumph any obstacles out before us. But I am different....
I am superman....

and my supergirl

blog soon...

CHEMO DAY #7


Another one down. I thought the last one was fast. This one was done in record time. My appointment was for 11:30am. After sitting around the new waiting room (very nice) got in around 12:45. Was hooked up, filled up and cleaned up by 3:45. Out the door by 4pm. Not bad. Very woozy and pasty after but felt good. Got by 5:30 and was able to scarf down a small pizza.....All in a days work. Feeling pretty good for now. Very tired. I'm awake when I should be sleeping and tired when I'm up. Damn that prednisone. 
I have the next appointment booked for Dec. 9th. That would be the last one....I hope. That will mark almost one year since the surgery and the start of recovery. I have a CT scan booked for Dec. 29th. To see if all the organs are getting smaller.
Blog in 3 weeks.

vic

And yes, that is a stash. Not dirt.

Ahhh, to be 20 again...

Precheck for #7 is done. Nothing has changed from the last time. Red cells are still good but small. I still get tired and am very lazy. Still have to take the iron pills to help with all that. I've put on 5 more pounds since the last visit. It's good but since I'm lazy I ain't working it out. Time to pack on that winter blubber to take me through til spring. But they say once the chemo is done and I stop with the steroids I will loose a bit. Ben is off to Lake Placid for a hockey tourney. I wish him luck. No one really knows how someone will be when they do chemo. If I had known I would do so well, I would have gone. Bookings were made long ago. Next time. All is go for tomorrow.
blog soon,

vic

CHEMO DAY #6


Friday's chemo day was the latest appointment I've had yet. I was scheduled for and got in at 11:30. It was nice to sleep in a bit. The best part now is they have taken the 6-8hr insertion time down to about 4 hrs. Barely had time for my benadryl nap. Colleen still had time to pick up my usuall chicken roti lunch....yyuummm!!!!  Even with traffic we were back home by 5:30pm. After it all, it was a bit of a slow day. Just chillin'. All is still good and now seems to be a peice of cake. It's beginning to hurt more and more when the do the needles on Wed. and the intravenious on Fri. Not sure if the veins are swiss cheese or what, but man, it hurts. Oh well, here's to only 2 more.
blog soon,

vic

Did the usual pre-check yesterday with the doc. All is good other than my red cells are getting smaller. As I mentioned before, the levels are good but they are getting smaller ever so slowly. This is why I feel so tired all the time. With yesterdays blood check, they have concluded that I am iron deficient. Again, explains the rapid hair loss. They have put me on some pills and once the chemo is done I will see a specialist tosee what is wrong with me now. Everything is still a go for tomorrow's #6 treatment.
blog soon,

vic

CHEMO DAY #5


Another chemo day has come and gone. All feels really good. The benadryl hit me like a ton of bricks this time. I was out within an hour. Wasn't out for long so I had some good time to hang and chat with Colleen. What a girl...took time out of her busy schedule to come down to chemo and make sure her baby is ok. Gotta love her. Even on her anniversary no less. Hey, at least we got to spend the day together. How many couples can say they spent their anniversary in the chemo ward of PMH....scratch #45 off the bucket list. Hope I'm more awake for the weekend. Ben has a bunch of hockey games and our big Thanksgiving dinner Sunday. Should be fun. All the best to everyone. Blog soon.

Not sure if anyone has noticed, but every week I do my chemo, I wear a different superhero t-shirt. I feel like i'm a cast member of the Big Bang Theory...LOL... It all started on the first day when Colleen bought me a Avengers shirt and I wore it. I didn't get a picture that first day......didn't think of it till I got home. But ever since Colleen always makes it a priority to find a new so I can wear it on my special day. As I said before, gotta love her.

vic

Had the usual pre-chemo check up. All is still a go for tomorrow. I had a nasty cold last week that kicked me around 3 ways til sunday. Thanks god it's gone so I won't have to miss a treatment. My hemoglobin is about the same as 3 weeks ago. Not a bad thing but they are concerned that my blood cells are getting smaller. This could mean an iron deficiency..........ha, I knew it !!!.. hence the hair loss. They're not to worried this time around but will do some different blood work before my next session and see whats up. Bring on #5.

outta nowhere.... Steve Jobs....I thought he was looking better. Sad day.

It's been a week since the chemo. Feelin' pretty good other than the numbness in my fingers. Hasn't hit my toes yet as they say it might. It's a very weird feeling. Little things like reading the paper or a magazine become a difficult to do. Turning the pages can be frustrating. Hell, even typing is starting to suck. But I sure do love trying to update this blog as much as I can. It's my online diary. Enough complaining, things are good. No much to say. Waiting for the next one on Oct 7th.

vic

CHEMO DAY #4


Chemo day #4 has come and gone. Nothing exciting to tell because everything went well. I was a little freaked out waiting in the waiting room watching all my past (good) nurse's come out and get a different person for their treatment. Then my name was called . . . finally,  my nurse . . . the one who accidentally upped my dose the first time and put me into shock. The one who wanted to take a boring day and make it exciting. The same one who wanted to cheat death with my body..... "Hi, I'm Maggie. I will be your nurse today". No shit, I know who you are. If anything happens I will haunt you for the rest of my unearthly life.
That aside, she was great and the day was perfect. Home now and starting to get very drowsy. Hope to fall asleep soon.

PS. those of you who thought that I wouldn't be able to get my copy of STAR WARS on blu-ray because it's chemo day. No worries, I was lucky to find a Best Buy very close to Princess Margaret and as I dozed off to la-la land ( lovin' the benadryl ) Colleen ran through downtown traffic to pick up my copy. . . All is good.

vic

Had my usual pre-chemo appointment with my doc yesterday. They can believe how well I'm responding to the chemo. The results from my CT scan were amazing. All of my nodes that were enlarged have gotten smaller..... like way smaller. One that was 14.8 cm is now 5.5 cm. Another that was 2.7 x 1.2 cm is now 1.1 x 0.9 cm. Too many to list but great to hear. My liver is now 21.2 cm compared to 28 cm on my previous scan. They still consider it enlarged but it's progressing well.
All my blood levels are getting better as well. Finally broke 100 again with my hemoglobin. Currently at 108. Hasn't been this high since April of this year. So the chemo is doing the trick.

Now, the only down side to all this good news is that I will continue to do the full 8 cycles of chemo with #4 tomorrow. All the studies and cases suggest that finishing the treatment cycle will enhance the long term success of the cancer staying in remission. Also since I'm doing so well with it, that I should continue, and by the end of the 8th cycle I should have a full head of hair....yippie!!!!

till tomorrow with #4
vic

Almost forgot, I have a CT scan scheduled to tonight. Getting everyone ready for school etc, completely forgot. I hate drinking that crap to make me glow. I will have to get a scan every 3 or 4 treatments. With all my levels doing so well, they want to check and see if my lymph nodes and liver are shrinking as well, or at least staying the same. Won't find out any results untill next Wed. at my appt.

vic

Still feelin'good and back at work. The 5th & 6th days have now passed and have noticed some different side effects. As I said before, on the 5&6th days is when I can notice changes to my body due to the treatment. I never had this before, but I just started to get numbness in the tips of my fingers and a bit in my toes. According to websites, it's normal but my treatment dose may have to be altered. I will talk to my Dr. about it at our next meet. Can't do much about it right now. It doesn't hurt, just a freaky feeling.

vic

Well, got through the weekend with flying colours. It's a weird, scary feeling that I'm feeling so good. Things may change with every treatment, but for now things feel great. I'm starting to put on a bit too much weight, i think. Might be time to work out...LOL. All in due time.

FYI, I really do think my hair is starting to grow in. Seriously.

Thanks for all the kind acts and words to my family and myself. It really helps. I will post again soon. Next chemo not until Sept. 16th.

vic

CHEMO DAY#3


Took a bit of time to get under way ( not sure why) but I finally got in to have my martini this morning. Things went well. Once the benadryl goes in it's lights out. It really makes me doppey. Not that it takes much anyway. Everything seems to be going really good. Yesterday I had the appointment with the Dr. and all my levels are going up. Which is very good and kinda unnatural. Not getting any of the common side effects. So far. Out of all the side effects, I only seem to be getting the acne one. It's kinda run rampant the last couple days. But hey, if that's all I get... no worries-bring it on.

The doc is really happy with my progress so far. I guess my wish of retiring early will have to wait another 40 years...LOL. Kinda tired now and may go for a nap soon. I will post again in a couple days and see if all still goes well.

vic

Things are going really well. Doing nothing is really easy when........ your doing nothing. Much needed R&R is doing wonders for the body. Everything seems to be ok and feeling pretty good. I probably won't post again until my next treatment Aug 25th.

v

It's been 3 days since the treatment. So far so good. I get kinda weak in the knees and tired during the day. So, I don't mind just sitting around, chillin'. I'm eating as well as expected. I've talked to the doctors and they have given me permission to go to Thunder Bay and be with the rest of the fam....Can't wait!!!!!. They were a little worried that I was heading to the bush to do some hunting & fishing etc. Then they would have to say no.  Just chill at camp. If I can do it here, I may as well do it there. I just have to be mindful of the situation. If I feel anything, anything different, I need to go to the hospital. Even though I had the reaction in the hospital last time, the same issues could arise. My blood levels will most likely drop in the 5-10 day range and not to push myself and watch my blood pressure and for fevers.

v

CHEMO DAY #2


So far so good. No reaction to the drugs this time. The Rituximab (the drug that gave us all the fun last time) is about 3/4 done and no reaction. All my vitals have been fine throughout, so it looks like it won't be so bad. Feeling really tired because of the benadryl. I'm sure I'll fall asleep soon. I'll post again soon.

vic

All went well today at the doctors. All my levels have come up so it's a go for tomorrow.........yay!!!!

I'm booked in for 830am and hope all goes better than the last time. And quicker...

v

       Went to the doctor yesterday. It was a good outing, Ben came along for the ride. Overwhelmed by downtown and way too hot.
       Anyway, they took some blood and found that my hemoglobin (red blood cells) are really low again. They haven't been this low since Dec'10. So the talk begins of a transfusion.....GREAT!!!!. I guess it's not that bad cause I had it done when I had the surgery and felt great for a couple months. It's a normal thing with chemo that they drop a bit.
      As we talk and he asked me more questions, it seem my body is reacting to the chemo. Slowly, but something is happening. The night sweats have stopped.....knock on wood....and I had the best sleep in a long time the other night. I'm moving around, although slowly, still moving.  He said that all the other levels are good and that he doesn't want to pursue the transfusion right now. The levels may come back on there own with time.

      So I have another appt. just before my next chemo to check it out, and then do chemo on Aug 4th.

vic

 Weekend has come and gone. Pretty much couldn't do anything. Very tired. Can't really move around for long. Just stayed inside either on the couch or in bed. I'm eating pretty good but the acid is always backing up and not really letting me eat the way I want. I'll check with the doc about that. Went out for a bit today. Was nice to get out for a ride in the car. Waaayyyyy too hot, going back to the air con....
I have an appointment on Wednesday for a follow up. I can ask more questions then. My next chemo is on Aug 4h. Hope it goes better than the last one.

vic

In the end they were able to get all the drugs into me. The last one finished at 830pm. They had to move me from the chemo clinic cause it closes at 7pm to an in/out patient room upstairs. At about 6pm they told me they were going to keep me over night for observation. My blood pressure dropped to 70/49. not good unless it's always that way. So we were ready to bunker down for the night.

Slowly through the evening my BP started to come back. They made a call to my doctor and he said that if it comes back to normal and stays for a bit then we can go home. By 11pm we were cleared and on our way home.

Didn't really want to leave the room we had. It had an amazing view of the downtown core, like a hotel. But we like our own bed better.

vic

So.......once they up the dose of the 1 first chemo drug, almost instantly I had a reaction. Boy did I react.

I got the chills so bad that you'd think I was naked in the arctic. They had to stop the drug and give me demerol. The shaking continued for about a half hour. Not to mention they pulled every blanket out of the oven to cover me. They even brought something that look like a vacuum that pumped hot air under the blankets........It was bad and scary. Thank god for Colleen to walk me through it.....But I scared her something fierce. She didn't like it.

I had a fever of 39.6. They can't start the chemo again until my temp drops to under 38.

It has so I'm back on. Not sure if they will be able to get all the drugs into me. Keep you posted.

Today is the day. I made sure that Colleen & I woke up so we could leave by 630 for an appointment at 9. Not knowing how traffic would be we arrived at 720. Just a bit early..........So we slept in the car for a bit.

Once they got me in, they hooked me up and gave me a bunch of Benadryl . Incase of a reaction. They started me on my first of 4 chemo drugs. They start out slowly then increase it. This one takes the longest. Every thing is going well. Nice little set up but they said I would get a bed because of the duration. Oh well. Picture below is the first injection that will last 8 month.

I guess when my doc said asap it doesn't really mean 2 weeks.

Well, I'm booked to start my chemo on the 14th. I will have to see him the day before for some more blood tests, and hopefully a big pep talk. He will go over some of the side effects that may happen before, during or after the first dose.

Some of the other things that came from yesterdays meeting;
During this time I was told not to be more than a 30min drive from a hospital. Mostly for infection reasons. May put a damper on some holiday plans.
My liver is about 3 inches bigger than the last CT scan in December. They say that it's somewhat normal cause of my disease and it's all connected to the lymphatic system like my spleen. The chemo should help. My lymph nodes haven't changed much. That's good news. Once it hits them, it can spread really fast.

Thursday will be a long day. Not knowing how I will feel on Friday, I will try to post again.

"if at first you don't succeed, . . . . don't try parachuting"

vic

Had my appointment today. Colleen and I knew this would happen at some point, and looks like the time has arrived. Looks like my unclassifiable lymphoma has come back.

I will be starting chemo in 2 weeks. My doc wants to book it asap. So it could be before. I've started on some pre-meds already. My chemo will consist of 4 meds to be taken by injection. The first one will last 8 hrs........great, tons of fun. My session will be once every 3 weeks for 8 months. After the 8th month I will continue one of the drugs, as a maintenance, for the next 2 years. During that time they will see me every 3 months, do a CT scan and take blood. Hopefully all goes well.

My doctor said that after the 2 years I should be feeling better and could go for 2-3-4 years without any symptoms. If and when it comes back, I will have to start again.

Don't know what else to say right now. Still need to process everything but wanted to let you all know.

vic

Had the CT scan yesterday at Toronto Western Hospital. Not much they can say. Even if you ask nicely, very non-comital. Next week I'll meet with my oncologist and he'll go over it.

later
vic

June 20, 2011

It's been a while since I posted cause everything was going well.

It seems now that a lot of my symptom's are starting to come back. "Here I go again"... and not like Colleen is dancing all over the hood of our caravan like the Whitesnake video. I started getting night sweats really bad about 3 weeks ago. My energy was getting really low, and I've lost about 10 pounds.
Finally went to get my blood tested and got the call today that my red blood cells have dropped 20 points since end of May. My white have gone up. This is how it all started the last time.
My Dr. has moved up my appointments from end of July to next week. Have to do a CT scan first to check my lymph nodes and hope those haven't grown. Then a blood test and a visit with the doctor.
Once I know more I will post it.

vic

First week back at work and it went really good. Energy was pretty good. Better than I thought. Great to see everyone again. Just dropped Ben off for hockey practice and now I'm starting to feel tired. It was a long week but good to be back.

My blood tests came back that I had done last Friday. My doctors office called me and said that "my blood levels are fine" and I don't need to see him again until April....What AWESOME NEWS !!!!!!!    So whatever I'm doing I need to keep doing it.

Not sure when I'm going to post again. I guess if I start going down hill I will let everyone know. I wish I could end my blog like Colleen did by saying "I'm cancer free"........ At some point I will, just not yet.

vik

It's been a slow week(s) for posting. Nothing new other than I went to give blood today in Whitby. They will send the results to my doc and hopefully he won't call me to come down to see him.

Back to work Monday.....

vic

Saw the surgeon on Friday. After poking around my abdominal area for a bit, he said all is good. I have a bit of tenderness on one side, but it's not that bad. He's asked me to stay home for another week. My first day back at work will be the 7th. No heavy lifting for a couple more weeks. I've stopped taking the blood thinners by injection. In it's place I will be taking baby aspirin for the rest of my life. I guess to lessen the chance of any kind of clots and heart problems. I won't have to see him any more. Now it all comes down to my blood and how it takes care of itself.

Haven't been on a scale but it seems the weight is slowly coming back. Everyone says that my colour is looking a lot better. Night sweats are still there. I'll find out more on that at the end of the month with my next blood test.

Off to the dentist tomorrow, finally..... I wasn't allowed to to go because the fear of continuous bleeding and infection. Hope that goes well.

Till next time,

Vic

FYI.....EI is such a pain in the ass to deal with....OMFG!!!!!

Nothing new on the news front. Have to wait for my appointment on Friday. We'll see what the surgeon says.


Thanks to Suanne, Paul and the girls for the generous gift. It was very thoughtful. I would have much rather have you come down to the house and get one of those famous foot massages...LOL.... or any of the wonderful eatable delights.

Hope to see you soon.

vic

Ok, I saw my oncologist on Wednesday. Things are ok. My blood levels haven't gotten to where he would like them, but that was kind of expected, but they are better. Surgery was only 4 weeks ago, and my body is still getting use to everything. I will have to go for another blood test at the end of the month. And then see my oncologist in April. I'm still having some night sweats. Definetly not as bad as before. The 2 weeks after surgery I was feeling great at night with no sweats as I was telling some people. I found out that it may be because of the blood transfusion I had during the surgery. Nice, new, clean blood running through my body. Now that my body is doing it's own thing I've kind of reverted back. Oh well. See what happens.

Another thing that came up in my pathology report (report from my doc) is that even though they labeled me with Splenic Marginal Zone Lymphoma, once they tested my spleen it wasn't conclusive that that's what I have. Confused?.... Me too. What it basically means is that they need to do a couple of more spacific tests on my spleen to confirm anything. They are going to continue to go with it but I could have something that's even more rare than the Splenic Marginal..blah..blah..blah.

Once I do the blood test at the end of the month, I/they hope to know more.

I see my surgeon on the 21st. I think that will be good as I'm feeling better every day.

Till next time

Vic

I figured I may as well make a post while I wait for my oncologist appointment. I'm a bit nervous as to what they might say. It really can't get any worse. I've heard all the scenario's already.

The way it works here at PMH, is that you have an appt. for blood and 1hr later you meet with your doctor. They can go over all the findings then. Neat. Except when you show up for your blood appt. and your take a number is 44 and they are only at 74. It rolls over at 100. It's like an assembly line. People march in and people walk out. Creepy. It'll take about and hour to get to me. Then I have to wait an hour to meet my doc. That sucks. Oh well. Thank god for a Starbucks across the street.

I'll post the results tomorrow.

Vic

Another amazing thing that happened to me was that William's hockey team, the Whitby Bantam AE team, got together and get me some great gift certificates and a wonderful gigantic card signed by everyone. So too all the parents, players and coaches, thank you very much.

The boys also went ahead and taped their sticks in some fashion with pink tape. I wasn't able to be at the game, but it was really cool to see the pictures of a bunch of 14 year olds with pink sticks. Awesome. At the next game, with my emotions running on high, I went into the change room to see the boys and have a few words. There I was greeted with a thunderous applause and a Whitby Wildcats jersey of my very own. Signed by all the players and coaches. WOW!!!. not to mention a name on the back that I hope comes true. Nothing but class, boys. Thanks.

Here's what the staples looked like a week after the surgery...

I'm finally getting around to posting stuff that should have been posted before. Waiting for some pictures to post.

I finally made it out to one of Ben's hockey game's. Really nice to see the boys in action again. In a touching gesture, all the boys taped various parts of their sticks with green tape. Green representing the colour of lymphoma. It was really nice and really cool. Also thanks to the Whitby Peewee A white for all the gifts and well wishes.

Happy New Year !!!!!

Want to wish everyone a great 2011. Colleen and I both have completely forgotten about 2010, and it's time to move on to bigger and better things.

Everything seems to be going well. Still moving a bit gingerly around the house, but at least I 'm starting to move a bit more. I cancelled the home care nurse a couple of days ago. They were just coming in to make sure I was taking my blood thinners. I'm kind of tired stabbing myself with a needle. I'm having trouble finding any fat to put it in. Only another month. The incision has dried up and is healing very well. I am actually starting to believe the nurses that you will hardly be able to see any scar. The heavy meds are done. Not having that much pain so I'm still taking tylenol throughout the day.

till next time

vic