Saba Beats Cancer

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...

So right now it doesn't matter of the methotrexate clears - they are keeping me in the hospital until my kidneys recover which will be tomorrow.  An extra day in the hospital. Just what I love.  And my white counts are so low, I am not going walking today - really don't want to catch anything. The up and downs of the chemo life. But it is the first time I have had to stay in the hospital - so I will take that as an overall win. And hopefully I can still stay on track with the last chemo session.  We will see. I get my last MTX test here shortly - hopefully that shows it's gone so I don't need anymore of those chemicals and we can just focus on getting my kidneys better. Yay.

So the MTX is just not leaving my body. My normal readings have been 1.5 or .77 after 24 hours, .15 after 48 hours and under 0.1 after 72 hours. This time I was 2.15 after 24 hours and .67 after 48 hours - and the MTX is doing a number on me. So they doubled the dose of the leucovorin to get out the MTX. And gave me some stuff to help my kidneys which did decrease the levels on the last blood test.  And I will get the double dose every 3 hours which is more than I normally get. Sadly - this causes some nausea and other side effects. yay. Don't know what what the chest x ray was for - nurse doesn't know either - but it didn't come back with any issues. So that's good. So - just tired, tired of this, ready to go home.  So let's hope this leucovorin does the job it's supposed to and the MTX is gone by tomorrow at noon.  Fingers crossed.

Part of my concern with the last methotrexate run was that it does trash the body - especially the kidneys.  Well apparently there "is concern" that my kidneys are acting up right now from the blood tests.  So we are going to do another blood test and an x ray to make sure things are not building up anywhere in the body from the MTX. So this may be a two part entry - will let you know what happens in the afternoon.  Oddly I feel better than I have in the past. My blood counts came way down but in the past I have had to have some nausea meds and none this time. I have been doing a ton of peeing so I don't think there is any fluid build up.  But the numbers are off so it is time to take a look. Hate the MTX 

Woke up this morning feeling better than I have on MTX yet.  I know it is because I have an even better attitude as I count down to the end.  Docs and nurses come in and talk about the end being so near. I am 13 days from ringing the bell on the last day of chemo. You cannot possibly know how good that feels.  The caregivers say, "hey you might get out Tuesday if you clear the methotrexate" - not falling for it.  Haven't cleared in 48 hours yet so no false hope.  Did walk a little bit longer this morning. Saw Doc Fowler when I was outside doing my deep breathing and even he is excited we are almost done.  On the last day of chemo you ring the bell here on the chemo ward. Both the girls are coming for that celebration to stand by me. So we will celebrate father's day a week late.  And that will be a just amazing and I get way to emotional thinking about it. I know it is still two weeks away but I woke up to the possibilities that life will go on...

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.

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.

As expected, these were the lowest blood counts I had. When I went walking today I asked and was advised to wear mask and gloves.  My white cells etc are way down so I could get an infection.  However the stubborn methotrexate remained at 0.17 (also as expected - almost exactly the same as last time).  So we should be discharged tomorrow on track.  The big news was I got one thing - after a clear spine for well over 6 weeks, I asked while they were still jamming chemicals up my spine. Turns out they don't need to and they cancelled the appointment today.  One less chemical in me! Kept busy, a little tired - but all in all just another day in paradise.

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...

Checked in with our care team prior to tomorrow to make sure I had the complete plan. They never really covered the plan with us - it just got kind of assumed.  And the plan remains the plan - no changes. 2 more chemos 2 more brain chemos One  my friends said he guesses it like an antibiotic. Doesn't matter when you feel better, you take the whole thing to make sure you kill it all.  So 20 more days in the hospital. That's the tough part - certainly better than what I was looking at from the beginning. I am a little more tired today and the mouth is really dry (pre-sore type stuff). So doing all my daily stuff to rally out of this before brain chemo on Friday.  Still eating and doing everything else - including walking the pups and did a lot for work today. Always a good feeling. Time for a nap.

After I got home yesterday I realized it was the first time that someone on our care team at the hospital talked about post - chemo life.  She said only two more -then about 21 days after that chemo you will think you will be feeling great.  But by August/September, you will remember what feeling great was really all about. Didn't dawn on me until later that we are finally talking about a post-chemo world. It just seems all we do is focus on now and the latest side effects I have to battle that we forgot that the post-chemo world is finally coming. It is still 39 days away from the final day of chemo. But getting there. Yesterday was definitely different. After feeling so good on Monday I guess I was kind of shocked to get slowed down a little, have trouble with fatigue and a constipation. But today back on track and feeling solid. So we move on. We visualize August and September feeling great and try not to focus on the next chemo run. 

About the start the final bag - the one hour last one - of Chemo #4.  Four down for main chemos and 2 to go.  Will be home just after noon today which will feel amazing. Should be about six more weeks of treatment - which still seems like a long time. This truly is a marathon. But 4 was the easiest so far - so what I am doing daily must be helping somewhat. Plus pushing on the right nausea meds.  I will take it. So far: 4 main chemos of 6 days in hospital - 24 days in the hospital 3 brain chemos of 4 days in the hospital - 12 days Total of 36 days in the hospital 10 lumbar punctures That is a ton of chemo.   What's left -  2 main chemos - 6 days each - 12 days 2 brain chemos of 4 days - 8 days 4 or so lumbars So 42 days left in treatment with 20 of those days in the hospital.  Plus the blood tests etc.   Whew.  But it is encouraging to feel good today getting out. A little tired (duh) but I slept great as we...

Woke up feeling good. Let Lee sleep in and took the pups for a walk which felt great. Blood work at noon so got my work in early with some emails and a few calls.  Overall felt good all day. Blood work all came back good - which means on track for chemo #4 on Monday. Odd thing how much the zarxio hits my blood work - it shoots it through the roof but it usually comes back down. So no more zarxio until Sunday so all the numbers come in on Monday.  Nice to hear. Got the magic mouthwash that is supposed to cure the mouth sores - it basically numbs the mouth which is a weird feeling.  But hopefully it will help heal as well. Most of them were healing and no new ones so I think we had moved past that. Met another lymphoma dude - he is done with chemo 4 and going to 5. He is 78 and looks amazing but 4 hit him a little harder.  He got an almost complete clear scan at 3 (not 2). Great guy and really upbeat -saw him walking as well.  So I think we know what works. ...

So the build up is finally hitting.  The mouth sores are real.  Got hit with fatigue now that means I nap a lot. And I got my first hemorrhoid!  Woohoo! Heard about how the chemo builds up and I guess doubling up means it finally hit this week. But it's tolerable. Sounds bad - but not like most people endure so I can handle it. Still get a few days off before chemo #4 on Monday so I think I can recover by then. Doing my zarxio shots in the stomach and all the other things I am supposed to do to keep rolling. Blood work and doctor's appt tomorrow. Usually I say nothing is wrong - now I get to tell them things are happening.  So we will see!

The previous two MTX I was pretty nauseous day 2 and 3.  Had a little nausea yesterday but woke up starving this morning.  Rare in the hospital.  Had a waffle and some eggs. But they are doing it different this time with a diuretic. I don't think I had one the last time and believe me and old fart taking diuretic mean a lot of peeing.  So maybe the stuff is flowing better this time.  I did 3 miles yesterday along with the sumo band and spaced it out so I walked three different times. Still not planning on getting out til Tuesday but I will just take the fact that I feel really good today.  My blood work was a little down yesterday but finally creeping back up. So just killing time in the hospital today and tomorrow.  But will be really glad if that was the worst of MTX as I go through the final two times.

Lee and I get a kick out of this.  It happens a lot. People come in the room and look at the empty bed and ask "where's the patient".  When I am sitting on the couch.  It happened when I checked in yesterday.  I got my stuff unpacked and sat on the couch and started reading, set up the computer, got the crosswords out and my water glass (they give you tiny cups that don't work for me) and the nurse came in and looked around and started to look in the bathroom for the patient. It happened on my walk this morning.  Y'all know I have just a bit of an ego and like to know I am tops at the fighting cancer thing.  And I never see anyone else walking the halls with their fuckers.  I just figured they are walking somewhere else. But I went up the elevator with a doc and she said she has worked here close to 20 years and never had a patient take their IV stand and go walk the halls to get a work out in. Not once. I get a lot of "god bless and keep going" in...