Saba Beats Cancer

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!

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...

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...

Another late breaking side effect was revealed during last appointment with our LPN - we were discussing the side effects and she asked if I had noticed my thigh muscles getting weak. Apparently that is another fun thing from the steroids in our chemo - it starts to weaken those muscles.  So we are adding some squats, step ups, lunges and leg raises to the daily mix to try and counter act that new fun one. I did notice on the walk today that those muscles are weaker.  Doing the tennis ball squeeze has definitely helped with grip strength. That was really getting weak as well.  Last day before chemo #5 - going in tomorrow afternoon for a late appointment with the doctor. That means a late admission and late chemo.  Luckily I am getting good at sleeping through that.  Mouth sores are gone finally - which is good. It definitely comes from the methotrexate chemo round (brain chemo) and I only have one of those left in theory.  Anxiety creeps in my bra...

Weather has been great. I have the energy and been eating well.  Took the pups for long walks both mornings in great weather. Nice breeze, gorgeous sky and not really humid which is rare for good old Houston.  We rode bikes yesterday to get a burger in the afternoon -- almost like normal people. Even met the new neighbors across the street.  Felt great to be normal again (albeit bald and with very little eyebrows).  Only thing that is off is the mouth sores and the fatigue - but getting through both. Will be perfectly healthy just in time to get some more chemo.!!  Woohoo! (that's by design of course) Had a great chat with the classmate who went before me on the double hit lymphoma, r-epoch train and he basically said reading the blog is like reading his journey.  And he is still doing great - though the mouth sores got worse on 5 and 6 for him and he didn't have the MTX midpoint.  He also had to stop reading the web on the disease as he got in t...

Crazy day!  We actually got in and out of MD Anderson for labs.  We got there this morning and got my labs in right before the lab computer went down. So we got the results quickly and got out of there. All my levels have come back up to normal and I can stop the zarxio for the weekend and just recover. Note that they really went down low this time - talked about the possibility of blood transfusion - but we bounced back nicely! They said it would be two hours to get the labs back up - phew - we actually won one! Yay!  Still a little tired today and the mouth sores are finally healing - so glad we didn't have to spend 6 hours waiting for lab results. Now I am home for the long weekend.  Got my work done early so I get to chill and enjoy home life for a change.  By tomorrow, things should really feel normal. For now - it's time or a nap and reading.

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...

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.

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. ...

Just blah -not bad, not great but I will be out of here this morning.  I feel like such a whiner sometimes because I really am so ready to be out. Then I talk with a stem cell recipient supporter - they have been here two and a half weeks going through hell.  I have not right to complain at all. But I am ready to go. So final bags will get down around 2 then we have the final final bag for one hour and we are out of here!  Got a ton of sleep last night. That seems to be the trend - not enough sleep, nausea, then I finally just sleep like a rock for 11 hours (with the usual wake ups).  Then feel better.  Got my walk in and a Starbucks and some food finally.  Lost a little more weight. Still have a spinal scheduled for Monday but I don't think my blood will handle that. We have our next appt with Dr. Fowler to hear where we are set for Thursday.  Will be nice to do some high fives with him on the remission since he got us here. Did some work this...

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...

Ok - maybe not yet. But a pretty big gap in my treatment plan was the loss of muscle tone.  I have lost 25 pounds and was walking and thinking I was a rock star.  But luckily my nephew's wife is a PTA and they sent a Sumo exercise band for me to use. They are stationed in Japan (thank you for your service Sean). I think the sumo connection got me to rip it out of the box and start using it immediately and thinking I was an idiot for not using it sooner. So now I do band exercises in the morning after the walk with my sit-up and stretching routine. I am sumo dammit. And that has to help get the Methotrexate out right? I mean more heart beats gotta help! They got me a kimono and I might have to sport that on a walk occasionally to let them know who really is sumo in this place.  I am sure we could do a fundraiser for Lymphoma research on that video. This also points out how this large team of supporters is making this so much easier to win.  I also got two amazin...

Interesting conversations this weekend with various family. There are times when I feel so close to normal and we are doing normal, non-chemo things that you actually almost forget that we are in the middle of the battle.  Then I look in the mirror and it is really clear that I am not that normal. Even Christine said this weekend - that I sound normal and we talk about everything but cancer and it seems like it did in December. And then someone asks and she is like - oh yeah - we are doing that cancer thing. But it is so cool to be normal and I am having more normal time this treatment so that is a good thing. But there are those not so gentle reminders. Some new odd things - I have no more hair in my nostrils. But you begin to understand their function as my nose just randomly drips down my face.  My eyebrows have thinned considerable and will probably not exist soon. More random - I did not have a great sense of smell before and now it is very acute. That is not real...

Didn't sleep all that great last night - but still better than in the hospital so I will take it.  The main thing is that I feel pretty damn good this morning.  I have a log (of course I do - I'm Navy dammit) of each day and when I got out of the hospital the last time, I was still really nauseated and kind of miserable the first day out. But this morning, not too shabby. One of the Lymphomites that we met said his body seemed to adjust and it got easier as he progressed and he was going on #5.  Let's hope that is the way my awesome bod will respond. Went for a long walk with the pups. Sunny and 60 degrees  - just a spectacular walk. I can honestly say that I will forever appreciate the little things like that a lot more now. Getting caught up at work and letting my white cells build back up so I can join the ranks of the living next week. But damn it feels good to feel god.

I cannot say enough about the nurses and the staff here at MD Anderson. They are truly amazing and work so hard to make sure we are getting better and staying comfortable. It is overwhelming at times - but we are working on the nausea, adding different drugs -they make sure we understand everything and what is happening at all times. When I was getting the spinal yesterday, the nurse held my hand - it was such a compassionate moment - means a lot. Going through hell surrounded by angels. Interesting thing yesterday. I am a twitcher when I sleep.  People who have sat next to me have no doubt seen me do a full spaz out after falling asleep on the airplane.  It's funny to watch. Unless you fall asleep in the middle of your spinal and do a little twitch and freak the hell out of everyone in the room.  Important safety tip - don't go fall off a ladder in your sleep in the middle of a spinal. Don't know if it is the situation or the chemicals but I am definitely a lot mor...

Yep - day 3 blahs again. Trying some new meds for the nausea. Handling OK but just not a great day. Finally got some sleep which is good. Doing some work and got the beach house - so spread the word.  We want to get it rented to help offset costs etc. We already have our first renter for July 4th week which is awesome. So will cut it short today. Know I only have two more days and things will start getting better.  Just have to embrace the suck and move forward.  It's hurting the cancer worse than it's hurting me.