Saba Beats Cancer

A year ago on New Years day 2019 I woke up with a large lump at the top inside of my thigh. It may have been growing for a while but I noticed it for the first time that morning as I woke up.  We had toasted the New Year's with champagne and were full of excitement about what 2019 would bring - so much promise and not a real care in the world - which was immediately dashed with a diagnosis of stage 4 lymphoma, double hit, with lesions in my skull, spinal cord and hip. And I had to go through hell to get here - but here I am. As you make your New Year's resolutions - please stick to them. Because you seriously do not know what you will wake up to tomorrow. Love your family - keep them close - almost losing them is too much to bear -  believe me. And I needed all of them close to get through this.  Love your friends - the prayers I got from around the world are a big reason I am here You need your health - the chemo will kill ya just as much as the cancer it seems ...

For the first time in forever, I have not doctor's appointments on my online MD Anderson schedule.  This is a HUGE first and feels pretty damn good. BUT I still had to go to the hospital to get my dressing changed on my PICC Line.  Lee is trained to do this but we ran out of the supplies to get it done and need a new prescription for it.  So I drove down there like a normal guy and got it done. If you missed my classic rock concert on I-10 on the way home, you really did miss something.  How cool is it to be driving around like a normal guy.  Albeit with tubes coming out of his arms, a little off on the stomach and dry eyes - but pretty damn normal. Still waiting on what to do about the kidneys. But we can wait.  And live a normal life.  Yay. These type of days are numbered - have to get back to work soon. So we made the decision that we need to take advantage of it while we can. We are hitting one of the many of the coffee shops in the area each...

Feeling even better today. With the exception of my kidney readings, my blood numbers were really good yesterday and they stopped the zarxio. They always give me too much - don't know why. Mouth sores are almost gone and not impeding eating (and I finally had coffee after 5 days without) which is good because my appetite is back too. Got down to the lowest weight again - the usual with the evil methotrexate. Lee got me some cake and ice cream to push that back up. Exchanged emails with Dr. Fowler again on what is next. They have delayed chemo #6 a week to figure out what to do with the kidney issue and see if it improves. He is consulting with Dr. Wilson, who basically pioneered the R-EPOCH regimen, on my case - which is pretty cool. I think I mentioned it - but the survival rate of the fairly rare cancer I had was pretty dismal before R-EPOCH.  And this has only been a couple of years now that they developed it. And now the survival rates keep climbing as they get better and b...

Got out yesterday and got home. But my body is just done. So tired -  just going to rest today and get ready for next week. Finally get to help my white blood cells etc with some zarxio and that will hopefully help the mouth sores that are brutal in my cheeks - but not as bad as last time.  I have a odd pain in my foot, dry eyes and just tired. And of course need to poop. Yay chemo. Hate that methotrexate and so glad it is finally done - my body can't take any more of it. And I know I am still better than so many more people that have gone before me and I will start perking up tomorrow. And my attitude is great - just my body is so spent right now. But I got to read the paper sitting in our rocker out front listening to the fountain - and it was awesome. And I get to sit with the pups and enjoy their company on the couch today. Also - much better than the other options. So - we will get through this to the other side. They moved my blood work appointment to Monday (up ...

Finally the methotrexate level is 0.09 - just below the 0.10 limit so that would mean I get to go home. And the creatinine went down just a little as well. The kidney doc did come by last night and basically because I was peeing a lot and all my other kidney levels were good - it showed my kidneys are working ok and since the creatinine seemed to have plateaued, that was a good sign. So she was in favor of just waiting and seeing.  She would not advise me doing another methotrexate run any time soon (yeah - definitely not). I asked about the R-EPOCH and she is going to look and see if something might need to be adjusted there as well. So I should be able to finally go home today.  The docs haven't made their rounds yet with the new numbers so I am just waiting for them to come by.  Was really tired yesterday and got a lot of sleep - which is normal at this stage after the MTX.  Also got a few mouth sores - not near as bad yet as the last time so still battling th...

Damn  -stuck another night because of my kidney numbers.  My cratinine will not budget off 1.89 and the damn methotrexate is still at 0.2 and needs to be at 0.1.  At 72 hours I have always been at 0.08 every single time - until now.  Now it decides to just sit in my system wreaking havoc. I thought the leucovorin was helping flush it out - but a quick googly search reveals that leucovorin actually just counteracts the effects of methotrexate. The only flush is the constant bag of saline that is pumped into my 24/7 causing me to pee every 90 minutes.  Which is good - but not helping as much as it should.  A kidney specialist is supposed to take a look today. To what end I don't know - he will say the same thing.  Tomorrow. Shit. Asked about how this might affect the last R-EPOCH and right now they say it will not. He actually said I could stay right through Tuesday - I said, kill me now, please.  So that's where we are - the build up of tox...

My attitude can't help but be better since this is the last methotrexate run.  Good thing too - because it was annoying so far.  I got in my room early but because we got delayed a day, they had to have new lab work done.  So that took a while - and they were doing maintenance on the lab system so they had to manually give them the results. So that took time. Then they ordered the chemo - finally. So instead of an early start, I got the rituxan last night at 2:00 AM and go the MTX at 9:30 this morning. Means I won't get out of here until Wednesday.  But who cares. It's the last one. There is the empty MTX bag with the evil yellow brain saving death liquid. And that feels soooooooooo good. The last MTX. Oh hell yeah. Now I just have to get it out of my system and get out of here to prep for the very final R-EPOCH chemo.  How great is that.  My blood work is down low so they may give me a shot to help with that.  Until then I have to wear a mask ...

Let the brain chemo begin! Back in the hospital for the 4 day brain chemo.  We got in a little early which is good because they have to have fresh blood (nothing worse than stale blood right) so that we can get started with the rituxan followed by the methotrexate. But feeling good today. Had a great walk with Lee and the pups in the morning followed by breakfast at local place near the house.  Sat outside with the pups - it was a nice morning. Then got my routine done, grilled some wings for lunch, walked the pups again and got the call the room was ready. So - my second to last stay in the hospital begins. Of course I recognize my nurse at this point - already worked with her before so admission was a breeze.  Will chill now and await the chemicals. This is the first time I have checked into the hospital totally relaxed.  Only took 10 admissions to finally relax and be ready.  Not the way I want to spend a Saturday but it will feel so good to finish up...

So - not going in the hospital today. There is no room and my doc said I could wait a day. So I am on the list for a room tomorrow. This is an ongoing MD Anderson issue - they are always crowded. We are so lucky to live her that I can wait at home for a room. The waiting area for rooms is not all that great. So that stinks - I was ready to go today and get the MTX over with. But it is what it is.  Get another day home to get better before I get hit again.  So not a bad day - a little tired - but still OK. On to tomorrow - will keep you posted.

Got the blood work done and we are on track for going back in tomorrow for the final methotrexate. Chemo #10 of 11.  Let's do it! Feeling better today so I think we are ready to make it happen.  Will be calling for a room - hopefully get in a little early to get it started.   No sweat now - I can make it happen!   Work has been much busier making the time go by faster. By the time I realize I am tired it is 4 pm and the day is shot. Quick nap and relax.  Exactly what I need right now.  17 days of chemo - then recovery - then normal. Yay. On the way! 

So - I have been pretty good at filling a day.  My daily routine takes time. I am blessed that I can do work online for about 4 hours a day. But that still leaves time. My brilliant cousin asked if I painted - said no but would love to learn. They really need to do those painting classes here. So he sent a very complex paint by numbers for me to do.  It is the hit of the floor - every nurse, assistant, doctor - everyone who comes in the room is massively impressed with the detail and how cool it is to have adult paint by number. Of course it is a beach house scene.  I feel like I am making progress but a lot to do. I am not patient but trying hard to get it done to look good.  And - what feels really great - is I may not have enough time to finish on my chemo. But it is the perfect diversion - play some tunes and get lost in the painting.  Just what I need to not think about sitting in the hospital 3 more nights. Feeling good though.  They forgot my ...

The great thing about cancer treatment is that you can do everything they say, do everything right and still get the fun stuff like mouth sores. So annoying but life the cancer lane.  I did the baking soda and salt rinses every two hours, got my zarxio in as soon as I could and then started by probiotic - everything I read that would keep these little buggers away and yet here we are.  Now they are not as bad as last time -so I will take the minor victory and call it a draw. Also went from constipated to the runs last night - just making sure I hit all the right bowel tones.  But no issues this morning. Took an immodium once during this journey and never again. Luckily all seems well in bowland this morning. Probably not what you wanted to read this morning. But my nurse pointed out that this is the nadir in the chemotherapy cycle. That lowest point where your body is just slammed by all the chemicals. And like a phoenix from the ashes, my body will recover over the...

As expected - the MTX was in the right level and I got out of the hospital today and heading home.  Looked in the mirror and noticed my eyebrows are almost completely gone.  Oh well - knew it was going to happen. A lot of the body hair is falling off as well.  Such is the chemo life. Feeling a little a tired as expected as well. But just so good to be home.  I have now spent 40 days and nights in the hospital.  And only have 16 days left in theory.  Two 6 day R-EPOCH and one last MTX. My numbers bounced back up on everything except white blood cells - so was glad to get out and get a shot of zarxio today and get those boosted. Schedule for the next week is blood test on Friday and go back in for R-EPOCH on Tue-Sun of next week. So a nice break. Well needed and deserved. Need to rest up.

Was in a bit of a funk for a week or so.  While it seems like I am in the home stretch, I was seriously dreading every single chemo. It got to the point of creating anxiety and stress.  (worrying - does it help?).  Really hit a low point this week as did Lee. It really wears on you. Probably why I didn't update the blog as well. And then I finally broke out. You all kept pushing me saying that I got this and I realized  - I do.  I can handle the chemo and handle it better than most. I have a plan and the plan is working and I have to stop worrying about things I can't control.  Just go with it and finish strong. It helped. I woke up Thursday feeling great for the blood work and and I hit the doors of MD Anderson yesterday ready for brain chemo #4 and not dreading it.  I have to focus on it not to let it creep back in - but so far so good. Getting this one done is a big deal in my mind.  So let's make it happen. Got the MTX running in right n...