Saba Beats Cancer

Chemo #5 - this is the earliest they started the chemo! Yay!  And I am so thankful for Navy training - they kept coming and and changing the bags all night. I would mumble my name and birth date, hold up my wrist band for scanning and go right back to sleep. So not that bad at all. Feeling good today. As you all know there is nothing better for me than feeding my ego - when the doc says you are handling it like a champ - I can take that positive vibe and keep it rolling. So I got up feeling good and went about the business of beating chemo as usual. And now I actually have a lot of work to do which is going to make the time go by.  So all in all - a good start to chemo #5!!  That light at the end of the tunnel is really starting to come into focus.

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. 

So yesterday was great.  My list is so long of daily stuff that it does pass the time.  I had just finished my walking and for the first time I did my deep breathing outside here at the hospital.  They don't have many good places outside for patients with fuckers (IV machines) but there is one bench. It was occupied by another patient. This is rare - no one but me goes outside.  So I just stood there near the entrance and did my deep breathing.  I am using the Calm app to do this and the meditation. So apparently Dr. Fowler - our awesome doc - has the rounds today and sees me on the way in. Tells me later, I saw you but didn't want to break your meditation.  Pretty funny.  When he makes the rounds, he brings 3 other docs that are shadowing him because he is the man.  He says - I showed them your scans including the MRI - and he still nods his head and says "Man, that was crazy" - all the other docs nod their heads too. Another reminder of how ...

As we waited for blood work yesterday we were struck by how much my daily groove has grown over the past few months. The goal of all these things is obviously to beat cancer but also to better tolerate the chemo - which now is the hardest part. As we go into chemo 5 and 6 we hear from all my fellow lymphoma travelers how hard that is. So I need to be better prepared going into it. One thing I need to do is gain weight. For some 50 years I have been trying to lose weight and it is surprisingly hard to gain weight in chemo.  But I am up a pound yesterday (go ice cream) and eating 4 meals a day - healthy to get the vitamins etc. So here is the daily routine right now to try and keep ahead of all the side effects and make sure I am as strong as I can be for the next round of chemo. Daily affirmation - I am cancer free etc. hokie but helps Stretching Walk at least 2X Sumo band work out Meditate - this has really helped the last few weeks keep me focused and relaxed Deep brea...

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...

The food here is not good at all. So yesterday I used Uber Eats from my room for the first time to get Chinese delivered and it was magical compared to the normal dinners here.  Had plenty of left-overs for tonight and we do have a patient fridge so all is much better.  Got my fortune below Doing little things well is a step towards doing big things better Interesting - I guess getting the chemo done s the little thing towards being cured. Reached out another double hit guy who is on chemo 5 and he just went into remission. He is on the board of the Lymphoma Research Foundation and says docs probably will not shorten treatment if at all.  Double hit is so bad that if it comes back, it is tough to beat a second time. So they want to make sure it is really gone. Oh well - this is still the halfway point if it is full treatment and I will be done in June, recovered in July. When I walk every day, there are not many places I can go - so I walk the halls and there a...

Got some big time goals for today as you can see from the nurse communication board - Basically walk without falling and manage constipation.  Such lofty targets.  Got my bran cereal, prune juice, drinking water and walking - plus the laxative. So I think we got this today.  Feeling good again -got a little more sleep but still not enough. Will sneak another nap in some time between the busy day.  Got a nice puzzle, music, and will work on listing the beach house on VRBO today which will be fun to figure out. Yesterday afternoon after my walk, me and the fucker went outside to enjoy a bit of sunshine.  Just stood there face up to the sun and a women driving by the entrance stops and rolls down the window and yells "looks like your enjoying the sun" - I say yes it feels awesome - she yells back "get that vitamin D, they don't stress that enough in there."  Random strangers yelling encouragement - one of the many ways we love Texas.

Ster - not Hem - the steroids started last night with the first round of chemo - the Rituxan.  For some weird reason the Rituxan makes me feel like I have had 16 shots of espresso.  So I basically sit there for 2 hours bouncing my legs up and down until the ride is over.  They think it will get better as I get used to it. Since the Rituxan is a part of both the big and little chemo battles, I hope so. Dr. Lee calls it the Rituxan roller coaster - you sometimes don't know how it will affect you. But it does give you the shakes. Remember the first shakes I got were the kind of massive feeling cold shakes. But now -just the hyper crawl out of your skin kind.  Progress! And the body will adapt. Dr. Lee is pretty funny - he says there are some variations to the batches too - like a gumbo - it's never quite the same. The hospital if full again. I guess my cancer is bad enough I get to the top of the list to stay on track with timing.  So you get your blood work, g...

Not easy to clock 1.5 miles walking the hallways but I don't want blood thinners and I want the MTX out so I can get outta here.  So we walk.  I am at a score of 1.5 MTX in my system after 24 hours which is good but not 0.1 - that's what I need to leave.  No one will estimate the timing because everyone is so different and they don't want to disappoint you.  So drink a lot, walk, pee - repeat.  They also pump an anti MTX drug and some potassium because I was low.  I ordered a banana with breakfast but they were out of bananas but they have plenty of pills. More irony. In many ways we didn't have much time to dwell on the fact I have a very bad cancer. We had to move fast and knew we had to stay positive to kick it and we know we are good at that.  But every once in a while it really hits you with the gravity of the situation and losing the hair and sitting in line at the barber shop was one of those times when you just get overcome with the emotion o...

Spinal tap came back negative - but the docs are puzzled - there should be something in there so they are going to run a more refined test to check. And we might as well still dump some chemo in your spine right now anyway because better safe than sorry.  They keep raining on my very little parades. I mean jeez - a little good news and they are like - meh - still pumping more chems in you. So second spinal test is done and the first good news in a while - spine is totally clean!!  So just weekly spinal methotrexate to keep the spine clear. And the chemo has started - lots of premeds to counter the side effects.  This is supposed to be the worse om the rituxan.  But half way through the bag and OK so far.  They have to take vitals every 15 minutes at the start so I am now glad I didn't last night. They are slowly upping the dose very 20 minutes until they max it out. Pretty nervous today about the unknown but just so relieved that we are finally started -...

Well I wanted to get started and I get my wish. Problem is I have double hit large B cell lymphoma. Cells are mutating making them grow faster and harder to kill. Luckily NIH found the R EPOCH therapy regimen and got similar outcomes to regular lymphoma. The bad news is you get each chemo session over 5 days in the hospital every 21 days. Plus they may add another drug in between. Aggressive cancer equals aggressive treatment. The double hit describes the two mutations that are happening. (and yes double secret probation immediately flashed into my mind). You don't find that until a few days after the biopsy so this was a late breaking update to my diagnosis.  Quite the gut punch - but we kind of knew things were growing pretty fast. Not totally unexpected So a really really rough road ahead. But these guys got it down and they love our chances of kicking this just as hard as it’s kicking me.  I cannot tell you how great our team at MD Anderson was today - our doctor is pr...