Saba Beats Cancer

Been a while since I posted and I have to tell you that beating cancer is phenomenal.  First, while I was laying there in the hospital at MD Anderson getting chemo (over 50 days total) I had a lot of time to think and one of the things that I wanted to do when I get over the Lymphoma was to help communities in need.  I found Team Rubicon while I was lying there - and you have a lot of time to google stuff while getting chem for Double Hit Lymphoma - and I decided I would join when I got out.   And I did - and did my first two deployments with them. You can read about it here: From Cancer to GSD GSD = Get Shit Done - and that we do. AND now, I am riding with Navy 83 Ride Across America - a group of Navy 83 Grads who decided to cycle to their 40th reunion.  I have been getting in better shape since chemo and I feel like this is a great statement on where I am 4 years after I finished chemo - to ride 585 miles from Toledo to Annapolis averaging 70-80 miles a day....

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!

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...

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...

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...

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! 

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...

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...

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...

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...

Cannot believe what a great day it is. Slept well and then went for a long walk with the pups and Lee for mother's day. Then sat out front in and read the paper.  Did my daily routine and just feel good. No nausea. No fatigue. No mouth sores. And it's the day after chemo.  Crazy good. Also - decided to stop being stupid worrying about chemo 5 and 6 which were stressing me out because I "heard they were bad".  But then I breeze through 4. And met a lady yesterday who is older and had more complications than me and still not in remission who was just finishing 5 and was doing 5. So I choose to believe I got this shit down and the daily thang is going not only kick cancer but kick chemo's butt.  I am I seriously haven't felt this good for so long. It is just nice. We are going to ride bikes down and get ice cream here shortly. Hope ya'll have a great Mother's day as well!!

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...

Nausea got a little intense so I had them give me the adivan and was able to eat lunch and dinner and then slept like the dead through the intense storms last night. Got the last bags of this set on at 8:45 so still on track for getting out before noon tomorrow. Not much going on - spent some time on the blog making it searchable for anyone else that might have lymphoma since we think it might help someone.  So will see if that helps get the word out.  Continuing working, finishing my list of things to do each day and doing the paint by numbers which is great therapy. Starting the dry brush today.  You brush from your extremities towards your lymph nodes.  It exfoliates and builds circulation which is how it is supposed to help you detox.  I gotta admit it feels pretty damn good so as long as it feels good and I believe it is helping - it's helping. On to the rest of the day.

So you don't always realize what my be affecting your psyche. Something as simple as shorts.  I have been feeling a little bad about the weight loss.  The other day Lee finally had it. I had lost some weight before this whole debacle so my shorts were not quite fitting right.  Last week we went to walk the dogs and I put my phone in my shorts pocket, walked down the steps and my shorts fell down to my knees.  She went out and bought a bunch of mediums to replace the larges. And I immediately felt so much better about myself.  I had felt like I was wasting away and looking like most cancer patients and I felt really bad about it. Wearing shorts that fit and seeing that I actually look like I should and this weight is actually my ideal weight made me feel really good about myself.  Felt a little stupid - but it is amazing what will make you feel good during this journey. And the staff is amazed with my painting. My cousin got me a very involved, very deta...

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 ...

My packing for the hospital gets more involved as we now know what we need to make the best of it as possible. It is pretty odd that they don't have good blankets in a place where people need to stay warm sleeping. And they want you to stay hydrated and give you a 8 ounce styrofoam cup which is useless. I bring a large insulated cup to hold water so I drink more. Also, I luckily had good nurses on day 1 that told me I didn't have to use the useless hospital gown and could wear my own clothes.  Of course I bring my speaker, a small puzzle, two books, sumo band, a good liquid shower soap with moisture, baking soda toothpaste to help with the sores.  And now we bring my own food.  That has been the second big key. As I read more about detoxing the body from the chemo - dry brushing has come up and been advsied by a couple of people.  Anyone have any thoughts?  It's another quick and easy thing to add to the list and a brush costs $10 on Amazon so why not if it ...

Feeling great again - a little stressed about going back in for #4 tomorrow but easing that with the breathing and meditation.  It is gorgeous here. Sat out front and listened to our new fountain, read the paper and had a big breakfast.  Going to finish the lawn and my daily routine. It's is great to have nothing going on in my body right now in prep for the next onslaught of chemo.  Such a great feeling. Sorry this is getting boring - by my count we have 48 days to go of treatment followed by recovery.  That number does not seem as daunting as before. I just looked at my zarxio to receipt for the first time. The price for 5 doses is $2,700 - yep $540 a dose for the magical elixir to recover from chemo. We are so lucky that our insurance covers 100% of that.  Thank you Blue Cross Blue Shield of Texas.  I don't know how many shots I have taken but it is over 20 so far so well over $10,000 in cost just for the zarxio.  So take it from - get the goo...

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...

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!

Always glad to be home. Such a great feeling to get out.  Blood work came back good - it just always takes three days so we know that and can work with that. First time I had actual mouth sores - not horrible - but a few and a lot of dry mouth this time which I did not have last time. Nausea on day 2 just like the last two times but did OK with it.  All in all not a horrific experience and doing the rinse to get rid of the sores at home. I did get another spinal yesterday and manage to hold off napping until it was over. So that actually worked out well. Back on the zarxio because my counts always go real low right now - so not going anywhere in public.  Need to stay healthy so I can go in for chemo 4 on Monday. So the battle continues - get my strength back and get ready to rumble on Monday