Saba Beats Cancer

So - I have been pretty good at filling a day.  My daily routine takes time. I am blessed that I can do work online for about 4 hours a day. But that still leaves time. My brilliant cousin asked if I painted - said no but would love to learn. They really need to do those painting classes here. So he sent a very complex paint by numbers for me to do.  It is the hit of the floor - every nurse, assistant, doctor - everyone who comes in the room is massively impressed with the detail and how cool it is to have adult paint by number. Of course it is a beach house scene.  I feel like I am making progress but a lot to do. I am not patient but trying hard to get it done to look good.  And - what feels really great - is I may not have enough time to finish on my chemo. But it is the perfect diversion - play some tunes and get lost in the painting.  Just what I need to not think about sitting in the hospital 3 more nights. Feeling good though.  They forgot my labs last night so no 4 am wa

You have all encouraged me to keep going on my plan on treatment. And it is a little tough - many times don't feel like doing it all but it all is focused on reducing the impact of chemo. I have been told that chemo builds up in your system over the 6 treatments (in my case 11 treatments) and that it will get rougher.  Well - got my blood work today and it is actually better than it as on day one of chemo for chemo 4.  My red blood cells, hemoglobin and platelets are all much higher.   Now - there is no cause and effect in chemo - but this really makes me believe that I am having some impact on the toxins in my body. That's huge.  It's not one thing, it's everything.  And everything seems to be doing some good work on beating chemo. Just need to keep it rolling for 26 days of chemo and then the recovery.   Love the positives.

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.

So that's what the doctor said when I asked about maybe cutting short that last methotrexate. The answer - they thought I would have had to delay by now with this much chemo. That what I am doing must be working because I am staying on track.  But no go on the shorting the MTX - gotta make damn sure the brain is safe and that is the toughest cancer to cure. So we need to get it out of there. But feeling pretty damn good that my daily routine is working.  I don't want to delay - I want this done in 27 days. I am checked in - have a pretty nice room layout - and ready to start chemo #5.  Once again chatted with others who are having a far worse time then me - so I will keep on rolling. This is the first time we went down and checked right in. Didn't get our dinner out before the check in - crazy.  So we have this one and two more chemos to go.  Yay!  Feeling good that we can get through it in style.

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 brain every once in a while but

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 the same funk.  Good to kno

We have a great next door neighbor.  We are both cancer survivors.  They say that you are a cancer survivor the day of your diagnosis because every day after that you have survived with cancer.  He is also a Veteran and has been going to the VA for his treatment. We just found out, on this Memorial Day weekend, that his cancer has rapidly spread and they do not give him long to live.  We have passed each other often over the last few months on the way to various treatments. We compare our side effects like the warriors we are. We have helped each other.  I bring his garbage cans in and out and if I see he has not picked up his newspapers I bring them to his door so he doesn't have to walk far. I am deeply saddened to learn his cancer spread and I can tell you it knocks you in the gut when you have cancer. His cancer was too aggressive. The VA operated and took it out of his back and he had a horrible time in recovery. And even before he could heal it was back in his shoulder.

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 next few days

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.

So now that I have stopped obsessing about the chemo and kept my focus on life and living, I am certainly a lot better off.  Man I was in a rough place. Just totally focused on the downside of chemo and had a hard time breaking out. It is what it is and I am just dealing with it and not worrying about it.  Back with a smile and the great attitude again. Feeling so much better.  The other thing I was doing was spending too much time looking on the web at things associated with the cancer I had. Not good - lots of bad things out there that could have happened that started to mess with the my head. Head back on straight. I am cured.  I am moving forward and smiling.  A little nausea but I don't care.  Resting and taking it in stride. Methotrexate is leaving my system and should be gone by Tuesday morning like always. Had my mom and sister here for the weekend which was a huge boost to the morale and focus on the right things.  And some great relief for Lee to have some help. 

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 now killing any remaining br

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. 

Nothing new.  Just good blood work. On track with kidney and liver and zarxio is helping the counts. So another boring appointment.  It really gets somewhat old. We show up at 12:30 to get the blood drawn.  Then they have to process it, I get vitals taken and then we wait to see the LPN. If I see the doc, it's $70 a visit, if I see the LPN it's covered which is nice. Every other appt is the doc. So we wait 2 hours and then get blood results to say everything is on track. No new issues, listen to my lungs and we are out the door. We leave the house at 11:45 and get home at 4:30 today.  Just for nothing new.  Whew. Just a little annoying. Still doing well and feeling good - perhaps just a little more annoyed and tired today.  But that's to be expected. On to tomorrow -

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 well. And I am eating better in the hospital no

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 detailed, adult paint by numb

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 close to really bad o

Back in the hospital.  So far this is the 4th chemo combined with 3 brain chemos - 7th stay in the hospital and so far 21 days in.  It's a lot. And the chemo builds in your system which makes it harder to handle as you get towards the end. First the great news - my central nervous system (brain and spine) is still very clear. They normally look at just the microscope  and can see some things but this time they did flow cytometry to really get the best look at the fluid in my spine and it shows no cancer cells.  This is a big deal.  With have the lymphoma running but we need to make sure the brain is clear to be cured and ensure no relapse. The nurse said "you are a pro at this now" and it seems I can claim pro status. Even with all the interruptions of getting the chemo started last night I got a solid nights sleep for the first time on this chemo run. So I wake up feeling good and get started on my daily work - get some real work done with my team and keep this par

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 is supposed

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 good insurance.  We just happ

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 breathin

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. Added a deep breathing

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!