Saba Beats Cancer

Made it to the beach and it is outstanding.  The nurse said at 3 weeks I wouldn't even remember how good it feels and she is right. Been three weeks since the MTX and no dry eye today, no runny nose, more energy - just feeling better every day. And I caught my own bait and caught one fish. Had to come in after that as don't want to overdo it. So one thing we forgot when we rented the house was to take the Roku with us. We left it here. Leave it to the kids of our renters to figure it out. So they decide to watch Netflix but rather than use one of our profiles, they create a new one - called "The Guy in the Attic".  So Katie freaks out and calls us because it is really kind of creepy.  Is there a guy in the attic watching our Netflix?  I don't remember leaving the Roku at the beach house so it is a mystery for a while until we figure it out.  But a very creepy start to that day. Will take the Roku with us this time. So the progress continues - no nap yester...

So - made it through a week of working half days with no issues. A little tired but no set backs which is HUGE.  I will take it.  Lee changed the dressing on my PICC line - still annoyed it is there but on well.  Also - I think they screwed up since I had no blood tests this week. I didn't remind them yet because I wanted to go a whole week without going to MD Anderson for the first time since February.  Absolute heaven.  Seriously. No hospital for a full week - crazy good times. Will remind them today so if I have to go back it will be next week. Scans are set for July 17th with doctor visit on the 18th.  All cancer patients (including this one) are always nervous even though I know I am cancer free. It is still there hanging over your head. Feeling better every day.  Had a little bit of tinnitus, still a little dry eye, running nose and damn this hair is taking forever to do anything. I want to be me now.  Instead I will settle for headi...

Yes - I am actually at work. I actually got a doctors note to work as is required as I end my FMLA - which is family medical leave and not what millenials think of when they see FML. At work and it feels phenomenal.  I am only working 4 hours a day this week and then resting. Will work 8 hours a day next week with only a 4 day work week.  Making sure I take it easy and have plenty of hand sanitizer and still taking antibiotics.  A few side effects lingering - the dry eye every morning, and a little tired - but that is it. Other than that I am a normal bald guy with no eyebrows or eyelashes.  Taking some vitamins that I will will accelerate the hair growth. We will see. The girls are still here and we have had some great discussions about weddings and futures and boyfriends and moving.  So nice not to talk about me and my health. Tonight we are going out to a new place for dinner.  So excited. And we are heading to the beach this weekend and I may ev...

So I had a beer and a glass of wine Friday night and both tasted great. Might have been a tad too early as I felt a little off on Saturday, more tired, and had the night sweats Friday night. This is the first alcohol since mid February. But I think I will hold off another week before trying again. Felt great this morning - have the girls in town for a father's day today. Went to the last coffee shop in the area we had not hit and then walked to breakfast near our house. Just absolute heaven. Being normal again is so amazing and feeling just that little bit better every day. We actually started planning a 2020 vacation - so very cool. Last thing I need now is to get this PICC line out of my arm. Nurses have not responded yet to my email request so I will push again on Monday.  So nice to be going to work rather than the hospital tomorrow - just amazing what has happened in the last week. And this is the longest I have gone without chemo since March 1. My body needed the break ...

So it's been one week since I finally got out of the hospital - and tomorrow will mark the first time since March 1st that I will go 8 days without a bag of chemo hanging from my arm.  Jeez. Still doing all my detox stuff so that I can get even healthier. Imagine waking up knowing that you will feel better than you have in 5 months. Every day for the next week or so. It is pure heaven. And we went to coffee shop number 3 this morning. It was a little far so just drove over there, walked the pups and sat outside and sipped my coffee and had a great egg taco.  Absolutely grand. The hair is coming in like an 11 year old going through puberty. All peach fuzz on my face and head. And it is pure white - I mean no color whatsoever.  So the first round of hair should be interesting.  Don't care as long as it is growing which means there are less toxins in my body. We did add wheat grass to the mix because there are indications it helps with detox and a couple of ladies...

Ring the bell on the chemo - we are done!  On Sunday, based upon the issues with the methotrexate and my kidneys I emailed Dr. Fowler and asked - since I have been in remission since chemo #2 and I truly believe that no cancer cells could survive the onslaught at this point - do I need chemo #6 (actually chemo 11 at this point) or is the risk to the kidneys too much? He called me on the way to the airport and said that is a good question. He has had 7 patients who ended early and all are still in full remission.  So I asked the question - is there a compelling reason to do #6 - he said he would consult with the very doctors who developed R-EPOCH and ask.  Well apparently at dinner at the big cancer conference last night they discussed my case. Their answer on whether I needed chemo #6 based on all that has happened from those that know the treatment the best:  "absolutely not". So no more chemo. He called me from Switzerland as we were walking the pups on the w...

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...

So the kidneys are still doing the same thing - just a little bit better on the numbers which is a good sign but not good enough to take another chemo. So it is on hold for now. Luckily I had reached out to Doc Fowler just before he left for the big cancer conference in Switzerland. He is meeting with the guy he first invented R-EPOCH and said he would discuss it with him. So - the mouth sores finally are getting better. The side effects are finally getting better and things look good. Will probably have another blood work on Thursday and know more then. In the mean time - it is nice to finally be able to eat dinner and start to feel normal.  By Thursday - all should be much better

Woke to a better day and a happtly father's day.  Went on the two mile walk with the pups and Lee made me some whole wheat waffles which were easy to eat with the mouth sores.  Did some things and then watched women's soccer which is just amazing. So feeling a little better - still scared about getting more chemo on Tuesday to be honest with how my body is now. But we will talk with the care team tomorrow after the blood tests.  Now both feet have pain and finally figured out it is neuropathy caused by chemo - the walking should help and it was a little less painful than yesterday.  So more rest and prep for the final battle - late post tomorrow after the blood test and see if the kidneys are doing any better!

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.

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! 

The norm today - a little off, a little tired, a little head ache, a little bone ache.  This is what gets old.  Just feeling off. So you don't feel like doing much. Luckily had work in the morning when I feel better - but by the PM - just feel like doing nada. When we had our appointment yesterday, I felt pretty good and the nurse just kept saying - wait until you are done. Man, are you going to feel good. But not today. And not for the next three weeks or so while we finish. Getting up and knowing that's the best you will feel gets old.  That's when 19 days seems like a long time still. But - doing all my daily activities and getting ready for the final two chemo's and keeping that positive attitude that keeps me on the right side of this. Getting closer every day.

So they only had me scheduled with LPN's for the final three weeks of chemo which, if you know hospitals, doesn't cut it because only a doc can admit me for the next two chemo's. So, at the appointment with my amazing LPN's I let them know that I want to stay on schedule and get it done. Or - I say, does this mean the doc has reconsidered, agreed with me that I am fully healed, and I can go ring the bell right now and end the chemo?!?! Down the hall my other nurse yells down - "no chance! we finish!!!" So they have changed the appointments and added the doc so that we can keep the show on the road. No issues with the blood work today so I am on track to go back in for the final methotrexate on Friday and get it done by Tuesday. The LPN says she knows I am sick of it but I am so close and doing so well.  So all is good. Did the lawn before the big storms here before my appointment and then drove down myself. That's how good I feel. Have to rest no...

I remember having some serious fear of how I would feel at this point. I had heard bad things about chemo 5 and 6 and was dreading it.  I mean I have basically felt crappy for 4  months and the thought of feeling crappier was pretty scary.  Which is why I was trying to find ways to prevent that by researching every single thing I could on detox for chemo. So all in all - not too bad today. The steroids have worn off (we now know the exact moment this happens because my voice gets a little weirder - higher and softer. Happens to be the exact pitch that Lee cannot hear so that I sound like a softer version of Charlie Brown's teacher when I speak from another room. Lots of "what?").  The senecot kicked in - so I am not feeling too bad. Part of that is definitely the routine and part is they didn't jack my chemo.  With others that went before me, they increased the dose every time - mine they didn't need to and they couldn't because of the Methotrexate in betw...

The first Sunday in June is National Cancer Survivor da y.  According to the website it  "is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community." There are great inspirational signs all over MD Anderson.   You are a survivor the day you are diagnosed. I can absolutely say that you are not just surviving cancer but surviving treatment.  And we started treatment March 1 - so we have been at this for three months.  And I feel pretty damn good as a survivor.  Sunday, June 2nd marks 9 chemo treatments complete (more if you count the 7 spinal treatments) - a brutal pace for the three months. That's 46 days in the hospital - 46 days and that is not easy. But it is working - remission after the second chemo.  9 out of 11 - that seemed so out of reach a month ago and yet here we are. Survival.  But there are 2 more to go.  21 more days...

Six days doesn't seem like a long time unless you are hooked up to life giving chemicals making you feel like crap.  Then it gets kind of long.  I stay focused that we are on the tail end - but that 3rd day is just blah.  So I didn't blog yesterday. Our next door neighbor passed in his sleep last night from cancer. He put up a great fight. We were going to toast our beating cancer with a single malt this summer. A toast in his honor is coming. Put the last of the chemo bags on this morning. So one more day and I am out. And we have stayed on schedule which is really nice. Means I am out in the morning tomorrow - no surprises.  So a nice Sunday at home.  The nausea is just there. Have tried various things and it just seems I have to deal with it or take something really powerful that may not be that great long term.  So I hold that in reserve. Slept a lot last night finally which helped with the mood.  So on to the daily things that keep me goin...