Wednesday, March 13, 2013

Went for my 8th (of 12)  infusion last Thursday. Again, it went well. This time because I haven't had a reaction the last few times, I declined the pre-meds. Afterwards I was just a bit tired, but all was good.
This time was the first time that I took the bus and GO train door to door. Since the bus stop is right outside my door I decided to try it to save a bit of dough. Using the bus and the GO was the best thing ever. Save some money and most importantly, time. No traffic. It's the way to go. They still can't seem to shorten the time from when I check in till I get my infusion seat. No matter what time I show up (this time, I was 2hrs early) I have to wait about 2-2.5 hrs. Oh well. I'm not doing much anyway. Starting to pack on the pounds. Trying to eat well and you can now tell. Have a appointment with my GI next month and will see if everything is going well. Energy is still a bit low but generally feeling good.

Blog soon,


pulling in to union station

Sunday, January 13, 2013

Sorry I haven't posted much, but not much to say. Really sick over the holidays. Turns out Christmas day was really bad. Colleen made an appointment for me and they threw a bunch of meds my way. Felling better. Think it was just the flu, but things like that hit me really hard. I got the flu shot but still hit me bad. Things are going well otherwise. Had another IVIG infusion on Thursday. Like I said before they have decided to give it to me for one year. I've finished six and have six more to go. Had a visit with my oncologist on Wed. Again, things are going well. Like usual, my levels aren't the best but they are maintaining minor losses and gains. The true test will come when I finish the IVIG. They hope that the virus' I've developed in the past are gone and not being kept at bay because if the infusions. They need to finish the cycle. Once that's done and I don't develop any virus' again they can then tackle the lymphoma.
They know why I'm so tired and weak sometimes. Seems my red blood cells are less abundant and getting smaller as well. I've been given iron to help bring these levels up. If it's not successful, I will have to get iron infusions too.

Blog soon, (promise)


my only room mate for my infusion....

Thursday, November 1, 2012

Went for my monthly visit with the oncologist. Although I didn't meet with my regular doctor I was finally given some good news. It seems that they can finally say that I've had PR, partial response. What does that mean?........Well, we again asked if I am in remission (cause I seem to feel better, other than the bowel issue and being tired) while I am not in remission, I am responding to the drugs given and the current  IVIG infusions. They've decided that I will be getting the IVIG for least another year. The reason they can finally say PR, is because the last 3 months my levels haven't changed drastically. They still aren't where they would like them but it's a start. I still have lymphoma cells floating around in my blood, but they haven't started to grow or attach to each other to cause a problem. Yay!!!!!

The biopsies came in from the colonoscopy and they determined that I have IBD/crohn's, inflammatory bowel / crohn's disease. The pills they started me on after the procedure is what I will be taking for the next 6 months when I will see him again if not longer. So all kinda good news. Have another IVIG on the 8th. Trying to figure out why my blood is still so low and find the happy medium with my iron pills to get me more energy.

blog soon,


Thursday, October 18, 2012

Had another IVIG infusion last Thursday. It went well. Not sure if I mentioned it the last time. It's now protocol to be given benadryl and tylenol before my dose. Very strange as I haven't had a bad reaction for a long time and it's not my first time. I used to go in, get hooked up, pumped up and leave. Other than a little tired, no problem. Now.....I'm just cooked. The benadryl through IV puts you out instantly. No news on the plumbing. The meds seem to be doing their job as I feel a bit better. Still tired and weak most days. Don't think my body is getting the nutrients it needs from the food I eat. I trying to eat as well as I can and put some weight back on. Should have results on the 31st as that's the day I meet with the doc. As well as another infusion. A big shout out to a regular follower, Jenny. Great to see you the other night.

blog soon,


just before the benadryl kicks in.....

Thursday, September 27, 2012

So had the plumbing checked on Monday. Finally starting to feel normal (as normal can be) and the appetite is starting to come back. Felt really sick on Tuesday. Not sure how I can toss my cookies without eating for more than 24hrs. I guess that's what happens when the jam something up your rump.
Even though the doctors took me off meds for about 6 weeks and I told them I wasn't feeling right, they were hoping things would subside. Looks as though my bowels are as bad as ever. So back on the pills for now. The meds might change once the biopsy's come back in about 4 weeks. Great.

blog soon,


Wednesday, September 19, 2012

Not much to report cause not much has happened in the last little while. Guess I should be happy. Generally I feel crappy everyday. I had another IVIG infusion last Thursday. It went well other than I always seem to break out the day after. Bowels are really giving me problems. I have another colonoscopy on Monday. After my last hospital stay I was put on some meds that actually made me feel good. Since I've been off, I just don't feel right. The doctors want to go in again (lol) just to make sure I have no cysts, blockages or build-ups. Even though I have IBS/crohn's, something else seems to be going on. After that I have no idea whats next.
The doctors are jumping back and forth cause I will not be able to go on the maintenance cycle of chemo. In order to do it - it has to be started 6 months after the original cycle for it to have any effect. Since I'm past it I will have to do the whole thing again if it flares up.
So again, no idea whats next.
I will blog again soon after my next appointment,


Monday, July 16, 2012

          As much as I want to throw in some fart & bum jokes, I'm not sure I can work it in. In right now for my monthly IVIG infusion and thought I would update my blog.
Finally got out late Friday afternoon. I'm feeling better but taking the eating a bit slow. So again they aren't sure what's going on with me. As I mentioned before they are not sure if the current bowel thickening came before all of lymphoma. If it came from the lymphoma itself or the chemo. If it came before they can treat it with steroids. If it's from the lymphoma, they can treat it with more chemo or my maintenance. If it was chemo drug induced, they can't use the steroids and would have to use something else but it could make it worse....FUN. During my hospital stay, I couldn't pass anything for 4 days. I thought it was something I ate. My bowels were so inflamed that nothing would pass. Good time for a fart joke.... but nothing.......
I'm currently on a bunch of drugs and they seem to be doing the trick. Kinda funny how my GI doctor told me all was good and I don't need to see him any more just 2 weeks ago.
     Had my usual meeting on Wednesday with my oncologist where they informed me that I would indeed be going on the maintenance chemo. I was told earlier this year that I couldn't because the rituximab was hurting my immunities. It looks as though my levels aren't coming to where they want so I will need the drug to help. I would also get some kind of new drug to help with the side effects of the rituximab. Who knows when this will take place but they sounded like they want to do it soon. After I'm done my IVIG infusions. Whenever that is....

blog soon,

my view for 6 days...