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,

vic

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,

vic

just before the benadryl kicks in.....

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,

vic

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,

vic

          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,
vic

my view for 6 days...

Days without Incident : 0

Having bad abdominal pain the last week or so (i know...i know) so I finally went emerg in Toronto General on Sunday. You know what happens when I go to emerg....I was admitted later that night. Today is Thursday and I'm still here. Feeling better but not great. Hope to get out soon. I will post more info once I get out.

Blog soon,

vic

Days without incident : 50

So far so good. Had the latest IvIg infusion on Thursday. It went well. They have it down to about 2hrs now. I have a few more scheduled and then we'll see what happens. When I started my immunoglobulin level was 0. After the first one it went to .5. So now, after 3 I'm at 2.5. Once we get to 5 and it holds there, we will start to spread the infusions further. Going from every 4 weeks to 6 then 8 until I'm off. Once that happens, my doctor doesn't really know the next course as I'm not allowed to get Rituximab (part of the chemo) any more as it killed off way too many good cells......Back to the drawing board.
Had an appointment with my gastrointestinal doctor 3 weeks ago but they canceled saying the treatment my oncologist is giving me is good and their is nothing else they can do for me. WHAT!!!????
I told my oncologist about it and told him I was still having problems in my gut. He was perplexed and was on the phone to GI within seconds and had me booked in for a after hours visit Thursday.
So, seems they can do more for me. I'm on some steroid for the bowels. 8 pills a day. Hope it helps.

blog soon,

vic

on the shuttle to the clinic

Days without incident : 15

   Nothing has happened since the last post but I felt it was necessary to thank a few people for all their support.
Thank you very much to Efie and the staff at the cafe for all their support and kindness during the fundraiser. A big thank you to all the friends and family that came out to support the event. We don't know where we would be with out you. It was a very special night. We (I) were overwhelmed by all the familiar faces and ones whom we haven't seen in a while, it was very touching. These are the things that keep us going when we have bad days.
Also a big thank you to all the staff at DCAS for their never-ending kindness in so many different ways. Your support for Colleen and our family is unmatched.
We have been blessed with a wonderful circle of friends and family who's endless kindness has kept us going during this difficult time. Saying thank you just doesn't seem enough. Just so you know we think about you every day and thank god for putting you in our lives.

I love you Colleen.

Blog soon,

vic

So.
Had my meeting with Internal Meds 2 weeks ago. Not much to say. They didn't take blood, not sure why. Asked how I was feeling & stuff. They aren't really going to do anything except watch me. If I experience anything out of the ordinary, go see a Dr. or go to emerg.
I still had the picc line in until after my IVIG infusion Thursday. Everything went well. Not as nauseous as last time. I did find out that I will be having a few more IVIG infusions over the next little while. It will all depend on how it reacts with my body. Have 2 more planned for sure. Chemo maintenance is still on hold until the IVIG is done.

Picc line removed. Red line indicates the actual length

blog soon,

vic

Although I've been told it was a fashion statement and bad ass. I've finally parted with my beloved satchel. I was unhooked from my portable IV yesterday. I still have the picc line in and will keep it for a while yet.
Freedom is here!!! No more getting hooked on bedposts or chairs. No more closing it in car doors. And no more late night gasps for air with accidental tube strangulation. FREE!!!!!!

Meet with Internal Meds on Friday.

Blog soon,

vic

Happy Star Wars Day!


May the 4th be with you.

So, had the IvIg blood infusion on Thursday. It wasn't as bad as I thought. I had a little bit of a headache but that might have been more from worrying about it. I got my special chair in the blue section # 53. would have been cool to get #52, Ben's hockey jersey #. Totally not what I expected. Didn't look like blood in any way. They started around 10am and I was done by about 2pm. Everything went well as they gradually increased the volume. The nurse's were really happy to use the picc line. I was able to get my dose of meds at the same time as the infusion. Cool.
Have another one scheduled for the 17th of May. I should loose the fanny pack (even though it's bad ass) in less than 3 weeks. I'm sure I will see my internal meds doctor before my next IvIg, to see if all is good on that front.
blog soon,
vic

looks like soda water not blood

fake smile, cause i'm freaked!!!!

   Tomorrow will mark 2 weeks at home with no re-admittance to any major hospital. Hurray!!!!! I went for my usual meeting with my oncologist on Wednesday. This will be the first one since the last 2 hospital visits. It seems that my condition has been the talk around the second floor at PMH. My doctor has entrusted the help of some 6 different doctors to help figure of what to do. That's right, "what are we going to do"?????? Some one my age should not be getting these kind of viruses. This led my doc to check out a certain antibody in my blood. I appears that I have no IgG antibody's (immunoglobulin-G).
     IgG is a natural product made by plasma cells in our body, IgG antibody is a large Y-shaped protein used by the immune system to neutralize foreign objects like viruses and bacteria - hence my problem - I have none. All the doctors have decided to put my chemo on hold indefinitely. My levels in that area seem to be holding well, and focus on a new treatment for the IgG. They can't give me the chemo because it's designed to kill bad cells. It sometimes takes some good ones with it. With me, they can't take that chance without me getting sick. This is what they think is happening when I get admitted to the hospital. On the 19th I will be getting the first IgG blood infusion. Not sure how many I will be getting but I have 2 book already.
    This blood can be made up from 100 different donor's. Mine is made from only 10 donor's with this special antibody taken out and infused into me. This is crazy stuff. Went on a American website and they pay $10k for one adult dose. Thank god for Canadian health care. Like any infusion/transfusion their are side effects. This is where the fun begins; I could have a heart attack or stroke if it's infused to quickly. I could have kidney failure. Those are the worst cases. The better ones are like, headache's, rashes and stiff neck. So not much else to say other than I feel ok. I still have the IV fanny pack tied to my hip. The antibiotics are running havoc on my digestive system.
blog soon
vic

So I was released late Tuesday. I developed 2 different kinds of bacteria over the last little while. They know the kind, but don't know the source or where it could be resting. They assume "resting" cause I will have the bacteria grow, go on antibiotics, and it will be gone. A week after I'm off the antibiotics, it's back.
They are going to treat me with 6 weeks of IV (portable) antibiotics this time..... I'm telling ya, the fanny pack is back baby......Let's hope they finally kill it. They can't narrow down the type of antibiotics because again, they don't know where it is. They are again assuming a worst case scenario, that the bacteria bug is resting on a valve on my heart. That would be bad.
Well see how it goes over the next few weeks. They also found out that I have mild or early development of crohn's disease. It could have started with the chemo and all the drugs, but we're not sure. Something else they get to screw around with. Love being the lab rat. Good time's.....

the luxurious TGH suite

Blog soon,

vic

As singer David Coverdale (of 80’s hair band Whitesnake) once said, “ Here I Go Again”…… just Colleen ain’t rolling around half naked on our Honda Civic, a la Tawny Kitaen on a corvette. Least I don't think so.

Well I’m back in the hospital. On Friday I went for a follow up from my time spent in Markham Hospital. They took blood again and that nasty bacteria that I’ve had before was back again. So they sent me to emerg in Markham to do a couple more tests. Once completed, I was allowed to go home.

I got the call on Saturday afternoon and was asked to go to emerg at Toronto General because it was growing again. Apparently, it grew really fast, and that’s bad. So I’ve been in since trying to get this figured out. Doctors here are awesome. Doing a whole bunch of tests again. I wish I could blog as things happen. I have time in between, but can’t log on to my blog site. The network here blocks it out. Apparently you can surf for all the porn you want but I can’t access my blog. LOL.

Once the news starts coming in I will post it.

Blog soon,

vic

It's been one week now since I had my last dose of meds. I was out of the hospital the Thursday before. I was in for one week for the same thing again. This time they found no blood infection. My white blood cells spiked at 76. The last time it was that high was just before I started chemo. Chemo has been put off till the beginning of April. My doc wants to wait till this craziness ends. Thursday past and nothing happened. I feel ok so far. I really hope nothing happens in the next couple of days. I had appointments everyday last week. Spent more on gas and parking than EI pays...LOL. They took blood on Friday. Got a call on Saturday from a doc saying that the culture has grown but they don't know what kind it is. Asked if I'm feeling ok and if anything changes to go to emerg. So as I mentioned, so far so good.
Hope it stays that way.
blog soon
vic

FUCK!!.........It happened again. All the same. Fever, shakes and sweats. Just got home from the hospital. Spent another week in my favorite hotel. I will fill you in later.

So I did get out late on Monday. Nice to be home. My portable meds were dropped off around 10:30 and the nurse showed up at 11 to hook me up. I have to wear the portable IV thingy till Tuesday. My arm is still killing me from all the IV's and blood draws. It wouldn't be fun unless they missed a couple of veins so my arm could swell up. Went for another blood test on Friday for the infection. Should find out in a couple of days if it's getting better. Saw my oncologist on Wed. blood tests are about the same. Haven't gotten all the results back from the biopsy's done when I had my colonoscopy. I see that doctor early in March. With everything that's happened my oncologist has put me off till at least my next visit with him, March 7th. On March 8th I will start my next part of chemo. It's a maintenance drug that will be done by IV once every 3 months for the next 2 years. This should keep my levels the same for a while and keep the lymphoma in check.

Funny story from the week in MSH (Markham Stouffville Hospital) emergency.  After one night in emerg, we were moved up to a room on the 3rd floor. We sure didn't miss the crazies running around in the middle of the night looking for the next fix. Even though I am covered for a semi private room we found ourselves in a private room. Great, but no bed for Colleen this time. More on that story later.....
Once we were settled, we were visited by Trish, Paula and Diana. We sat and chatted for a while. With the noise in the hall getting louder we closed one of the two doors I had (two doors??? for a hospital room??? keep reading)  About a half hour after we closed the door, my MALE night nurse came in to hook me up and get my vitals. Just before he came in, we all noticed he was in the room between my 2 doors getting dressed into some kinda smock with mask and gloves. When he finally came in, he lost his ever loving mind. "I'm in QUARANTINE!!!!!!" What are we doing in here without gowns and masks...." ARE WE NUTS"?????!!!! NO FOOD in the room is allowed out or it will be thrown out. So much for the swiss chalet from Colleen B. As he rushed everyone out, other than myself, to get their gear on. Trish and Paula left. They had bee there for a while now and thought it was a good time to get going. Diana stuck around and came back in with Colleen all dressed up ready to protect them from me or me from them. We're really not sure. After a long discussion, we didn't really care. Diana eventually left as did Colleen. Every nurse (mostly my MALE nurse) that came in after that was wearing 'the gear'. Not til the next day when the day shift cam in that we figured everything out.

Someone left the sign on the door (that we closed) from the person before me. They were under quarantine. To all my friends who came to visit and everyone in emerg. I'm not contagious, I am fine. Somewhat, anyway.

me in emerg

Di and Col in 'their gear'

blog soon, vic

Haven’t blogged in a long time, but now is as good as any. Sit back and enjoy the extended version.

As you know my chemo finished early in Dec. I felt good for a couple of weeks but then early in Jan. I had some weird episode. I was at work  (Thurs.) when all of a sudden I got really cold (but it wasn’t) and started shaking uncontrollably.  Colleen had to pick me up (with the help of Claus) and put me straight to bed. Cranked the electric blanket, took a bunch of advil and slept for the next 12-15 hrs. Once the fever broke I had a wicked headache I couldn’t shake for 2 days. I was very weak and tired.

Probably should have gone to the doctor but didn’t. Was back at work Monday and all was ok till Thurs. – again -  one week to the day, it happened again. All the same; cold, shakes, sweats, bed warmth, headache, weak, tired. Stupid me didn’t go to the doctor and was back at work Monday again.

You won’t believe what happened next. I’ll skip to the 4^th episode cause the 3^rd was the same as the first two. After the 3^rd I stayed home Monday to recoup. I made it through the week and thought I was home free until Sat. when the shakes happened again. I feel so bad that it happened when I was at Myah’s hockey practice and she had to see me shake as we headed home. So this time Colleen made an appointment with my family doctor for Monday. She spoke to my oncologist and they suggested I see him to rule out any infection and begin to explore what was going on…and would later see if it had to do with my lymphoma.  First things first…

Saw my doc, he did a full physical and took a bunch of blood. I felt fine as I usually do on Monday, but he said he would call if they found anything in my blood. While we waited for the blood culture to grow my doc called Monday night and said that my white blood cells were very high. On Jan. 7^th it was 11 and now it’s 52. Normal is between 9-12. Not sure what to make of it, we wait. On Tuesday I was at work and my doc called and told me to go to PMH emergency asap. “they will be better equipped to handle me.”  Knowing that PMH doesn’t have an emergency, I called my oncologist to see if I should go to Toronto Western or Toronto General. He said just go to the nearest emerg ASAP!!!!

Freaking out I drove to Markham Stouffville where Colleen met me in emerg. As it turns out, my blood came back and it started growing a bacteria. If left too long (remember I’ve stupidly have had it for 4 weeks now) you can get very sick and, well, you know. So we spent 2 nights in emerg in our own little suite. We were then moved to a room up stairs. The whole time I had to keep leaving the room to go and do tests. I’ve done more tests in the last 5 days than I’ve done in the last 2 years. CT scan of my abdomen and head.….Nothing. Colleen could have told them that. Ultrasound of my liver and heart, full body bone scan, another ultrasound of my liver, Nothing so far.  Blood work daily.  That’s a good sign but they need to find out where the infection is hiding.

It’s the weekend and I’m still here. I’m leaving Monday morning at 6am for Southlake Hospital (Newmarket) for my final test. It’s another test on my heart, forgot what it’s called but they go down my throat to get a closer look. They are trying to see if the infection has rested on any of the valves…….That would be bad.

Came back from the test, and all is good. Wasn’t the best test I had but also wasn’t the worst. So, looks like I will be getting out tonight. I will have my final dose of meds (that I’ve been getting every 4 hrs) at 6pm. Wait till it’s in and get discharged. I will keep doing the meds over the next 2 weeks with a portable IV, again every 4 hours. I will see my oncologist on Wed. for the usual blood test and meet. Should be interesting to see what he says about this whole thing.

Thanks for all the love, prayers and help for Colleen, the kids and myself. It sure made this difficult time a lot easier.

Although, a scary time tons of funny stories from the last week. I will post snippets later.

(view from the patient transport to Southlake)

blog soon

vic