Saba Beats Cancer

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.

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 kee...

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 spine has been clear of cancer cells so why I am still doing brain chemo?  Because the lesion that was hurting my vision in back of the head is just not quite healed yet.  The MRI shows just a tiny blemish left. So in the eyes of the doc, there still could be a cancer cell hiding in there. We aren't gonna blast it with radiation or biopsy it because that is too risky - so we pound it with MTX. So why risk it getting brain cancer? We aren't.  We go forward. What I needed the most was a full plan which is what we can up with yesterday.  I hated the not knowing week to week what we are doing. Now I know what we are doing from now to the end. Nothing I like more than the plan So if you had brain cancer - you would do the MTX regimen that I am doing. And only that. And if you had lymphoma, you would do the R-EPOCH regimen that I am doing and only that.  Because of that slight chance of brain cancer - we are doing both. Luckily my body is handling it th...

Final 24 hours of chemo #3. Not too bad - some nausea but the worse part was the nausea med making me jittery so not much sleep last night. But no nausea. Oh well.  Tomorrow I am out! Just have to get through the next 24 hours which should not  be too bad.  Still up and walking and outside a little to get fresh air. Got a gift basket from Bill through Tiffany who is a pharmacist here - allowed me to create a festive fucker for the holiday. So I got that going for me. I forgot that I put them up there and was doing my walk and everyone kept smiling at me and nodding and I figured they were just extra friendly today - but it was the ears. Kind of Harvey like. A part of this is - the fucker is noisy 24 X 7. The flow of the meds clicks through and it can be rather annoying. When the nurses were doing my spinal on Monday and they closed the door and were draining the spinal fluid it is really quiet and the one nurse says: "wow - never realized they did that - that must...

Another great day. As we know the Zarxio gets my blood cells going the right way but really made my bones ache.  Apparently the fix for this is Zyrtec which is working very well. So we got a reprieve from the hospital, it is a gorgeous day and I feel pretty damn good. Did some dog walking, had a great breakfast and lunch because I am starving again and then some work in the yard followed by watching the Masters when I got a little too tired. An amazing day. Psyched to go in the hospital for chemo #3 now that I know what we are doing and that we are shooting for cured.  I did more research and all I come away with is that having Stage 4, double hit non-hodkin lymphoma is REALLY bad.  So the fact that we are where we are is even more amazing to me. So - a great day.  Good to spend it with Lee being normal.  And on to more ass kicking tomorrow!  And I am ready.

Can you think of anything more fun than that?!?!  The post-spinal blah plus dealing with insurance claims. We have the stuff pretty well organization and Blue Cross is doing an amazing job so actually it really wasn't that bad. They claimed the denied to claims but it turns out that our MDA team already had given them when what they need and they paid all the claims. So we are still good. Pretty scary as one was the initial PET scan and one was a day in the hospital. So not too cheap. So - that was not near as painful as I thought. So I am feeling good on that side.  Took a nausea pill - but that was actually for the spinal so that helped. Just chilling. Doing a little work. Getting organized on the billing and moving things forward.

Last time we had the brain chemo, we were waiting for the MTX number to get under 0.1 and hit 0.15 and thought we would be out that afternoon and were devastated when the test came back and I was only 0.12 and had to stay the night. Even had the suitcase packed and sitting by the door ready to go home.  Not a happy camper at all. But this time with the sumo mantra by my side, my first number was 0.75 - consulting the log, my first number last time was a whopping 1.5. (so that's half for the math challenged). BUT I ain't packing no suitcase to jinx it today. I get another test at 2:00 PM and we will see if maybe the new routine shortens the visit. So I pushed the walk today - walked faster and longer, did another round with the sumo band and sit-ups which is a lot more of a work out then I did before.  This will be the test. The workout makes me drink more as well which of course makes for many trips to pee in my tiny receptacles so they can measure my input and output....

In the big chemical mixing pot that is my body right now - it's always something - this time it's the pH.  I got checked in after waiting the required 3 hours in the lobby and got settled in the room.  Started on the fluids IV but the orders for the mid-course chemo were for April 5th which means they can't start until midnight.  And by God they will start at midnight which means no sleep. Sure enough, take the prep drugs for the Rituxan at midnight and about 2:00 am the pharmacy gets the Rituxan ready and they plug me in.  Remember with Rituxan they have to do vitals every 15 minutes for the first hour and 30 minutes for the second hour and it is a 2 hour bag.  Party on!! It was one of those times when Navy sleep training really kicked in.  I was so tired I was able to get an OK sleep in between all the wake ups. Since they are pumping fluids in me, I also have to pee a lot and they are testing the pee because I have to be at a pH over 7 in order to ...

All is set -blood work is great. Even more important, the last spinal tap was clear of cancer.  Let's say that again -my spine is clear of cancer cells.  Yes! So back to the waiting area to wait for a room. Once again, the hospital is full but my doc gets me in.  Checked in right before shift change so it will be a while before the get the Rituxan and Methotrexate double combo. Then the race is on - as our readers recall, I get stuck for an extra day last time but this time we want to get out on Sunday. Would be awesome. Also know we can handle the ABH for nausea and since the nausea was so bad last time - we are going to be on it this time. So here I sit. Waiting for the chemo to begin -MTX #2 - let's get it done and get this cancer OUT! On a side note, Pete and Chris are heading home after helping out immensely. Lee said she got to Dallas and was able to relax - all the stress just melted away. Best anniversary present anyone could give us. She was refreshed and...

And the award for the best spinal goes to that guy yesterday! Everything was ready when I got there after work. I took the ABH this time (had some serious nausea after last one), I drank  A LOT so there would be plenty of fluid. He got up in there and delivered. Lots of good flow. Jammed that MTX in there to fight the evil central nervous system cancer and got out.  Rested 15 minutes and went home.  And ate like a pig - Lee made Italian wedding soup which seemed perfect.  Then up and back at work today. So that worked extremely well! Treatment then work - that is outstanding.  And Lee is getting a quick break this week to do some wedding stuff with Christine. She is heading to Dallas today and we have a couple of great friends here to watch out for me. We thought I would have been in the hospital for mid course - but they are going to help with a lot of the work around the house we have not been able to get to during the fight.  A great ...

So - all systems go for going back in the hospital for Big Round #2 - a big round or R-EPOCH starting tomorrow night.  Had a meeting with Dr. Fowler and team and all is looking good. I handled the chemo well and they don't see any changes.  They are happy that the lymph nodes have shrunk to nothing and that I don't have any pain - they are actually very pleasantly surprised. So 5 more days of chemo. But we are more prepared. Take the damn stool softener right from day 1 and take the anti-nausea starting on day three when it always seems to hit me.  Keep the exercise going and get ready to watch some hoops. While this is going on - there is prep for the potential for STEM cell replacement if it is necessary. Because my cancer cells have mutated with two very bad traits - they are ultra fast growing and ultra hard to kill - the only real way to ensure I am cured and not just in remission temporarily is something called stem cell transplant.  Because I have such an...

Cancer Songs (to the tune of Yesterday) Suddenly, all my hair is falling off of me, With the weight loss I am half of me But I believe in my MD's Odd thing to hit me in the shower but it made me chuckle so what the heck.  So feeling good, had lunch went for my walk to get my 2 miles in drank some more water and feeling good.  Then the doc walked in.  Said that's all good but most the MTX side effects will hit in the next few days and it is a GI impacting drug which means "from you mouth to your anus".  I just don't like a symptom that uses mouth and anus in the same sentence.  But it is what it is.   Then facebook feeds me an ad for a military shirt that says - "Embrace the Suck".  How does facebook know this?  That at this moment in time I just need to embrace the suck.   Of course I bought the shirt on Amazon.  The hair loss has moved to my chest - and that is no small tuft of hair.  So that ...

Oh yeah - handling the high dose methotrexate pretty well so far. Finished up another rituxan and the HDMTX at about 4:00 this morning. Along with some wonderful steroids which make everything feel great again.  My head had started to hurt a lot in the front from the lesions -but the drug cocktail I had last night definitely makes everything feel great! So now it is a race to get the MTX out of my system - as soon as I am below 0.1 ppm in my blood I am out of here.  And how do we get it out - WE PEE!!  Old guys rule in the frequent urination world! Already went for walk number 1. Still have the little fucker with me to deliver more fluids and make sure my urine PH stays on track. MTX can trash the kidneys with crystals so they pump you full of stuff to make sure that doesn't happen. Got my coffee and waiting on breakfast.  But any day you feel good is a great day during treatment. So far it's a great day. I am sure the worse is coming around the corner - but I ...

Don't you just hate it when your neutrophils are just a tad too low?   Well apparently I do.  Because now I can't be admitted to the hospital for my wondrous high dose methotrexate chemo today. Have to come home, give myself a shot in the stomach, get those neutrophils back up and go in tomorrow. Yay Felt great today when I got it so a little disappointing.  The first thought I had when I felt great is that it must be time to hang a drip bag with some serious cancer fighting poisons in it!! Let's rock. But, had some work to get done and did that. And researched the metho and it is interesting.  Methotrexate doesn't know when to stop working.  So the pump it in, it goes right after the brain cancer cells and then you have to get it out of your system. And this is where I will dominate.  Of the many skills I have -peeing is one of them. If there was Olympic urination I am pretty sure I would qualify.  I get to the leave the hospital after al...

Another great day yesterday and feeling good today. The bone issues are still nagging and there but I guess they are healing. Will ask tomorrow.  The homemade mouthwash of a teaspoon of salt and baking soda in a quart of water seems to finally be working. Yesterday at work I felt like I was beginning to talk like daffy duck due to the sores on the either side of my tongue that got worse during the day. My team didn't seem to mind and didn't look at me too strangely. So back to work today - can do about 4-6 hours without getting too tired and it is working well with our amazing team. So grateful I can do that and so thankful we have a financial cushion to handle it. Lee is prepping the beach house to rent to make up some of the income. Just in case she didn't have enough to do with changing my port dressings on my arm and such. But just another part of the process. If you need a great beach house this summer -we will have the ad up shortly!! Thanks all for the cards ...

Soon to be hooked up to large doses of toxic cancer fighting chemicals for the next 96 hours.  All done inpatient.  So a nice 5 day stay in the MD Anderson hospital with great staff.  Went through most of the results with my team today. The good - blood and organs are doing great, I look healthy, have lots of energy and a great attitude.  The bad - the biggest lesion on the skull is right on the area where your brain does vision which is center back of the head which accounts for the double vision and they have to get at that fast.  More chemicals are needed for brain issues. As we always say - not another problem but an opportunity for me to clearly demonstrate my cancer fighting abilities. Yay. So today is treatment Day 1 - an important day since all the other days of treatment key off of this.  I will be getting chemo treatment #1 (of a total of 6) over the next 5 days.  During the next week I come back once a week for a blood work and spinal ta...

Is really the hardest part right now - I just want to get started and maybe have some of these lumpkins shrink.  It seems like they are getting bigger and I am still in pain around my head that is tough to control. Not a good feeling. And now I have a sore throat that feels like lymph nodes there are swelling and starting to hurt.  Yay And still no sign of my records at MD Anderson.  Even though I was assured they were sent yesterday - so I am going down there first thing in the morning and hand carry them to MDA.  So annoying that a simple thing like this can't get done. On the plus side - got my teeth cleaned. The world wide web recommended getting teeth cleaned prior to chemo and it seemed like a good idea.  So that is done. And - did my first acupuncture session.  Webisphere also says that is a good way to relax, relieve nausea and help deal with the chemo.  I must admit - totally relaxing while there and did feel much better in the afternoon...

I suppose on the journey you learn a lot about what your body is responding to as it relates to the invasion.  Yesterday was a big learning day. Obviously green tea is a big anti-oxidant boost.  So we have fresh mint out back and I got some ginger and made a big ol cup of steaming hot great tea. And one hour later it felt like someone was drilling both molars out without novacane - pain so sharp it brought tears to my eyes.  Had to look back at the diagnosis and there is all this weirdness going on in my head like thrombosis and such.  At the time I didn't connect to the green tea but it took 2 400 MG of ibuprofen to finally get to where I could eat.  I was actually thinking of the SNL skit way back in the day when Billy Crystal would say things like "last week I drilled out both back molars without novacane" and the other guy would go - "man I hate it when that happens. I didn't make the connection to the green tea until this morning lying in bed. In fact, ...

A couple of people on the team said - what is it - hard to describe without the diagnosis so here is what the MRI peeps said.  My Doc warned me that reading it sounds like I am done - but that's their job.  Main positives are the fact they aren't screwing up bones and such and the brain is not affected.  Woo hoo - I have spent a lot of time cutting and pasting words into the google to figure it out So here it is: EXAMINATION: MRI THORACIC SPINE WO CONTRAST CLINICAL HISTORY: M54.2 Cervicalgia, M54.12 Radiculopathy cervical region, neck pain radiating to left upper extremity COMPARISON: None. Frontal and lateral views of the thoracic spine were obtained. FINDINGS: There is a metastatic lesion in the posterior T2 vertebral body measuring 1.4 cm. There is some enhancement in the bilateral T3 rib head regions and extension to the facets. There is another metastatic lesion at T4 measuring 14 mm. These are both confined to the vertebral bodies without extraosseous e...