Saba Beats Cancer

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...

Most people get a 10 spinal tap - I got an 11. Actually called a Lumbar Puncture but where's the fun in that.  And I have to admit that sounds bad - who wants their lumbar punctured. Anywho - sorry about the semi depressing post yesterday - got a little overwhelmed by the enormity of the task at hand for a few hours.  Plus the exhaustion -but a friend reminded me that thank God we live here with MD Anderson who can make all that happen in just two days. Felt really good this morning.  I know so many of you have put me in your prayers and thoughts -and I can/t help but believe when I wake up feeling good that it is those thoughts and prayers giving me that much needed boost -so thank you for that. Love you all. So we are set for tomorrow - LET THE CHEMO BEGIN! We check in with the amazing Dr. Fowler at 1:30 PM and get the full and final diagnosis -hopefully know what is going on in my skull - and then move forward with the treatment.  Should be a 5 day hospita...

Brutal day. Left the house at 9:00 AM and got home at 8:00 PM. Got the PICC port put in so they can just hook up whatever they want in them my body without putting more needles in.  It is awkward but will help.  The line runs deep into the body so I had to have a chest x-ray to make sure they didn't pierce the heart or something. From there it was on to the bone marrow sample - yay - but it really wasn't that horrible.  They got bone and bone marrow to test. Then caught a large golf cart to go way down to another building to get the PET scan - used my ports to inject some good nuclear materials.  Couldn't eat before the scan so I was starving. aching, hurting - and just about had it by this point. Brought a snack bag and devoured it at this point Then off to another building way down the way to get the MRI. Jeez - that's a long day. More blood work tomorrow followed by the spinal tap.  This ain't no sprint - definitely a marathon.

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...

Finally after all the waiting, and pain, the MD Anderson appointment is at 12:30 for check in and 1:30 with the oncology team. yay. Didn't post yesterday - nothing happened. Pain, waiting - ugh.  The one highlight was looking in the mirror and realizing I should get a haircut and I could go today.  Then laughing that I could save the $20 because I will losing it all in a couple of weeks anyway.  Yes! Actually felt OK today.  Not too much pain in my hip and a little less pain in the skull. Maybe the healthy stuff is working. We went for a longer walk with pups this morning, did some quick shopping and worked outside -gorgeous day. Slipping in to watch a little Astros baseball. Best part of the day - one of my classmates just successfully finished chemo December for lymphoma - his was more aggressive.  He completed the EPOCH regimen - one of the options facing me.  I cannot tell you how much it means to talk to people about this who have just been throu...

How amazing was that.  Thirty seven phone calls, three forms, multiple people calling and in just a week and a half we were able to get all my medicals records delivered two blocks away!!!! (look it up on the map - literally two blocks) Wow. Huge relief. And - did I have to call and check? (I did) - not really.  I got a call confirming my appointment from MDA and she said that she just wanted to check and yes my records had arrived.  Thirty minutes later the guy on my team in records called to let me know everything had arrived and the MDA pathologist was looking at the slides and my Doc would be looking at the scans. Man - they are pretty awesome so far. Oddly my throat pain is gone but new neck pain is here.  Feeling a little better.  Pretty sure all the weird things I am doing will mean the cancer will be gone by Monday.  I mean I added essaic tonic today - should clear things right up. Right hip, where it all began, is killing me today. Our in...

“If there is no struggle, there is no progress.” Frederick Douglass Interesting Mr. Douglass.  But we found out where the records are and of course they must be in different locations and not MDA.  The slides of the biopsy were "still being prepared" and you know that they have 72 hours they are not late.  I almost shouted -"I have cancer - I may not have 72 hours" but that seemed a tad dramatic. So went back to being the pleasant 57 y/o patient and thanked her and could she please make sure they went over as soon as possible. They courier them over to MDA so they will be over by Friday. In theory. It took a few calls but I know where they are and the number to call them.  The CT scans went out by fedex to arrive tomorrow as well - they have an actual tracking number. So once again, not at MDA yet but they are moving. So we should still be on track for Monday. We have made progress. Had to work from home today - a little too much pain and too much time cross-e...

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...

The bad news - the snafu in getting my records over to MD Anderson delays my appointment.  They have to have the scans and slides from the biopsy. I was assured today that they went over from Methodist but they have not been received by MDH.  One of the benefits of MDH is I already have a patient advocate, Trish, who is helping me. Because they do have my chart, they could schedule me for an appointment and got me in on Monday. Sigh.  But the awesome news is I have an appointment with a Lymphoma Rock Star Doc. We will be meeting with Dr. Nathan Fowler on Monday, February 25th at noon. What's annoying is now my throat hurts and feels like I have swollen lymph nodes there now as well.  Huge shooting pain in the jaw today and the double vision was bad yesterday. So really need to get the party started on treatment and start reversing this crap.  oh well. One great gem from reading my medical record yesterday as I sent it to MDH - "David Saba is a pleasant 5...

Dammit!  The word "patient" does not describe me in any sense of the word.  So today I called MD Anderson to see if they have everything and they don't.  So no appointment tomorrow - they are going to try and squeeze me in for Thursday now or next Tuesday at the latest because they have to have all the records, scans, slides and such from Methodist to give me a second opinion. Soooooo frustrating - luckily our friend at Methodist is pushing to get all the records pushed over to MD Anderson today - but it is too late to get in for an appointment tomorrow.  My patient advocate at MD will call me later today and let me know if things moved - she was going to put a priority on the request from her end again to Methodist.  I called and resubmitted the request on my end and we know that was received from our Methodist contact so I think we are on the right track.  I was hoping they could get us in tomorrow, then do the three tests we need (bone marrow biopsy, t...

So the skull was in so much pain yesterday that I broke down and got the Tylenol 3 - started taking it last night. By this morning I was almost completely incapacitated - total body ache, weak, in pain nauseous - just horrible.  Obviously I cannot take Tylenol 3 at all.  Stopped taking it, found a website that said 400 MG of ibuprofen plus 1000 of regular tylenol did better than an opioid in a study - tried that. and I am like a new person. Feel OK for the first time in a few days. Actually took a rod and some shrimp down to the beach and caught a nice size cat that fought for a little while.  From a horrific start to the day to a not too shabby afternoon!!

Large B-Cell Lymphoma - Aggressive Stage IV.  And yes we freaked at the stage but he said it was because of the spread to other lymphs and the bones - BUT we are low to intermediate risk which is really the important part. The spleen stays - chemo should clean it up. So that is all pretty damn good news - 85% survival rate - YESSSSSSSSS! So now the research begins - do I take the Hyper CVAD, the EPOCH or the CHOP-R chemo route. My oncologist likes the tried and true CHOP-R that has been around for a while.  His blood cancer guy has a preference for the newer EPOCH and the dudes over at MD Anderson invented Hyper CVAD so he assumes they will recommend that.  Will have to see which is right for me. So the plan - MD Anderson on Tuesday for their recommendation- and will probably stay with them Tests - Petscan, Bone Marrow Biopsy and Spinal Tap (they will zap in a little chem while they are there) Chemo - usually every 3 weeks for 18 weeks So now it is off the t...

One of my favorite movie lines was in Bridge of Spies when the Russian agent is in deep trouble and Tom Hanks is explaining his situation and that he could be put to death and the agent just calmly sits there. Tom gets exasperated and asks "Aren't your worried" and the guy calmly responds - "Would it help" When you have cancer, people expect you to be more worried, mad, down, - but I keep thinking about that line - "Would it help". We spend a lot of time researching everything that is popping up daily right now.  The best we can do to take charge is to figure it out and figure out the best path forward.  And that is working. Nothing will crack our positive outlook (though I did bump into the bed last night - hard - with my leg which required a "F***k EVERYTHING" from me - - which seems funny now.  Really - everything?). Tough to sleep last night before the big appointment today to hear the first plan of action from our Methodist docto...

The best thing to happen to the medical profession is MyChart - everything about me that they have done to me is there. Every test, every diagnosis - everything. So when I first called MD Anderson, while I was on the phone, she pulled up my chart from Methodist and could see everything that was happening.  Just a few years ago people were walking around with a huge box of charts so everyone could see everything. So the good news - the scans show that my liver, kidneys, pancreas and lungs are clear!! The bad news - the spleen has something on it but a lymph issue can't be ruled out at this time.  But there are definitely multiple enlarged lymph nodes in different parts of the body. Thus the diagnosis of lymphoma - should get Stage tomorrow possibly. The waiting sucks.  I would like to have both appointments right now and know the plan of action but oh well. That's life. Still eating healthy - veggie burritos last night with Ezekiel wraps, carrot soup this lunch w...

So after thinking deadly blood clots and myeloma just two days ago - we get the call back from the doctor's office just now and based on the biopsy and scans it is cancer and it is Lymphoma.  YAY - only people in world high fiving each other of lymphoma but so much better odds than myeloma. We won't know the stage until Friday when I go in. And for those freaking out about the MD Anderson appointment - I AM STILL GOING TO MD ANDERSON - I just wanted to be able to bring the full results with me I just needed to postpone the appointment. So we have an appointment on Friday at 10:00 with Methodist oncology to get their take on everything. We have the MD Anderson appt set for Tuesday at 9:00 AM.  Both will have all the biopsies and scans to make a great decision on treatment!! We are on the move forward people!!!! So psyched. Still eating healthy, had a great walk this morning, soooooooo good to actually sleep last night. On a side note about hospitals - when they asked ...

Prevailing wisdom is lymphoma which after all the other words bantered around sounds pretty damned reasonable.  So the docs have all talked and are sending me home.  Manage the pain - we get the biopsy back in 2 days on yay or nay cancer - then a few more days to really see what type to come up with a lymphoma treatment plan. So lots of good things today so far!!! Getting outta here today. And jeez they finally brought food at 1:30 - oh well. Thanks for all the good thoughts and good stuff - we are building the momentum forward!!!!!

So the nurses aid came in at 4:45 to give me a sponge bath - though she had me do my own private parts  - even though I am perfectly capable of taking a shower before the biopsy. I got a new gown and change the sheets.  Then she left and said no drinking or eating - I'm thinking she is prepping me for a 6:00 AM biopsy - nope! It's not until 8:00.  They really don't want you to sleep here. And of course it's a hospital so I didn't actually leave until 9:30 - but that gave Dr, Heyne my Oncologist time to swing by and tell me the scans yesterday looked pretty good except the lymph nodes were pretty messed up but there's a lot worse things than lymphoma (warning -the down is coming so don't get to happy at this point). Yay - I can kick lymphoma pretty quickly and easily.  Lee asks - but what about the bone stuff??  Shoot - didn't ask was so happy about the good news for a change.  No blood clot in the brain and just lymphoma and I can probably leave toda...

Neurologist just came in - they can't see a clot on the scans!!  Good news - something else is all up in there but it aint a clot.  So nothing of massive urgency. Yay - more good news -we will take it. Lots of blood work now and have looked at results and will summarize in the morning  - very low Lypocytes 13 when it is supposed to be 25 -45 - I assume Mr Lumpkin is eating all the Lypocytes. Dinner was OK and I could eat healthy.  Did some more meditating because you wait a lot.  Either that or go crazy. Also really high Lactate Dehydrogenese - 593  when it is supposed to be 87-225. Got wheeled around in a bed to get all the CT Scans done.  Including intravenous contrast which definitely felt strange. Great people here - just everybody is being great.  First night sleep in a hospital.  Hopefully biopsy and neuro consult first thing in the morning. Thanks for all the good thoughts - let's see if I can sleep through the night here.

We went in for the first oncology visit at Methodist with Dr. Heyne and things were going well.  He pointed out the positives that my blood work was normal and then examined the lymph lumps and said gotta biopsy those bad boys and it turns out we wear the same underwear that is pretty awesome -  but then he finishes with  - 'you have a potential blood clot in your brain and I really don't feel comfortable sending you home with a potential stroke. He sent the MRI to the Methodist neurologist Dr. Volpe who concurred with him on the MRI that it was not a good thing to have a "p ossible partial dural venous sinus thrombosis which could account for the heterogeneous flow in the dural sinuses." So here we are - I will cop to the fact that the double vision thing was starting to bother me and was worried about driving like that.  So Lee and I were glad they recommended getting that fixed first. The sharp stabbing headaches and neck pain also are not fun.  So off ...

My doc told me about the seminal vesicle (insert bad joke here) - but apparently this last piece of the MRI never got posted. And I can tell you the right iliac crest is killin me today.  (true fact though I had to google half this crap again).  My orginial doc does not believe the large lumpkin is a lymph because it creepily soft and floating which is not the way a lymph will be.  Hope the get it out and biopsy soooooooon. EXAMINATION: MRI PELVIS W WO CONTRAST CLINICAL HISTORY: R22.40 Localized swelling mass and lump unspecified lower limb, To evaluate soft tissue mass TECHNIQUE: Multiplanar multisequence MR images of the pelvis were obtained pre- and post intravenous administration of Gadolinium. COMPARISON: No prior  IMPRESSION: 1. Extensive osseous metastatic disease of the pelvis, sacrum and proximal femurs is noted. There is a large lesion in the anterior right iliac crest with large soft tissue component. 2. Enlarged inguinal lymph nodes the larg...

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, ...

Slept well. Weight is down to 187 from 194 after Christmas when I ate enough sugar to feed a ton of tumors.  Took 400 mg of Ibuprofen because that really helps with some of the pain - mostly in the hips where it all began I guess.  Slept very well again.  I guess knowing what the hell is going on is much more peaceful than not knowing. Woke up a little hyper because.  I am very weird that way - I love a challenge and there can be no bigger challenge than staying alive, staying alive - ah, ah, ah, ah - staying aliiiiiiiiiiiiiiiiive.  (now you have that song in your head).  So I am pumped - we are going all anti cancer diet today. Walked the pups two miles and had some already peeled Texas pink grapefruit. I don't get spoiled much but my wife peels the grapefruit and it is awesome. There is a lot of pain in the right hip but tolerable.  We go to the new HEB in the Heights which is awesome! Halfway through the store I get that weird double vision thin...

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...

The good news was - I got that check up in January and the blood work was all right down the middle normal.which is puzzling that I have all these lesions but now cancer markers in my blood. From the chart The other good news is the lesions are not fully into the bone - no deformation yet so we will take that as good sign number two, Also Mr. Lumpkin has a new friend on the other side of my groin. Yay - not a good sign Good sign number three is I didn't wait and got things moving early.  So now what. It's the weekend before the oncology appointments and I am not sitting around watching the lumpkin brothers grow. So let the research begin -want to scare the shit out of yourself - google multiple myeloma.  Wow -this is truly going to suck. What's funny is when I thought this was arthritis, we knew that diet is a huge part of being anti-inflammatory so we started diving into The Plan by Lyn-Genet Recitas.  We knew that was going to help a lot with the arthriti...

Without a doubt, the worst thing is telling people you are close to. I know they are all going to be there for me but it feels like I am letting them down. I am a high strung, take charge person and love to lead -so I just feel like I am failing the people I love the most. Which means that is the number one thing I am living for - my family - gotta get a pic up and focus on that. It was devastating to tell my wife of 32 years and my kids.  Lots of tears and hating the unknown.  My mom lost a sister, mother and husband to cancer.  My dad was 57 when he died.  I am 58 - I know this is going to seem like deja vu all over again for her and I hate that I am putting her through that. But my mom is a nurse so I need her on the team to help push me to ask for more and to make sure we are thinking of all things medical. I need everyone on the team so I tell them all and get things rolling. I have two very close friends that are cancer survivors and the next call is to...

And so it begins.  The battle starts today - every day from now on we beat the cancer that has somehow creeped into my bones. We are 100% focused on winning - and when I get focused -shit happens. So how did we get here -  Early December started noticing a lot of pain in my right hip area. Being 58, thought it was muscle issues.  Wife tells me I don't stretch enough, I yell back, I'm stretching.   But the pain doesn't go away and the hip is weak.  I am having trouble standing on that right side when I put on my left sock. We had our doctor here in Houston but we could never get in to see her so I wanted to switch doctors and felt like this hip issue was a good a time as any. So I made the appointment for mid December based on the recommendation of Linley, my amazing co-worker, with a Methodist group doctor. Yay me -went to the doctor!!  He is puzzled but sends me to get an X-ray on the hips. Word comes back through their very cool MyRecord ...