Saba Beats Cancer

Obviously this is all very complex and I write stuff down to remember everything the doctors and nurses are saying about all this treatment, timing, chemicals, side effects etc.  It's way too much.  But on timing - I am pretty maniacal about keeping track about what they say. So they said I would get a scan right before chemo #3 so we could see how I was doing. Since there is obviously a lot riding on how I am doing I marked this down. Well the appointment comes through and it is set for right after I think we would have chemo #3.  So I shoot an email asking if this is a mistake or maybe they are moving chemo #3 later. No word back from the medical team but the appointment just moved to having the MRI on the brain April 10th and the full PET scan on April 11 with Chemo #3 set for the 12th. So I was right - it is before, not after chemo #3. So - when I say you have to constantly stay on your toes and ask questions - you really do. We especially want to see wha...

Another good day. Got blood work done and it came back positive - obviously white cells down but liver and kidneys doing very well with chemo which is key. No issues. A little slow - the chemo fog is real - which can be a little annoying at times (where did I put the damn newspaper?). But all in all a good day. Got some work done then Lee and I headed to the beach. Two friends helping get everything ready to rent and we got the pictures done. It is beautiful here and the fresh salt air is damn good. Reading a book (in the shade - got my 10 minutes of vitamin D) and getting a little rest.  The chemo does take it out of you.  So we will chill out down here. Watch the Astros dominate again and hopefully Tech and Houston win tonight (passed my bedtime).   In the chemo groove cause what else can we do - 

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.

So - finished big chemo #2 - which makes me 1/3rd of the way done.  A little less nausea - tired - but otherwise just glad to be home with Lee and the pups. It is rather humorous when we leave the hospital because Lee cannot keep up with how fast I am walking to get the hell out of there.  After 5 days it is all I can do to get out of there as fast as humanly possible. But staying positive - 2 out of six complete and on schedule.  PET scan is scheduled for just after the third chemo which would be the 12th of April. And to keep the pressure on the cancer - we have a spinal set for Monday and brain chemo (3-4 days in hospital) next Friday. Damn. But - today and the rest of the week I am home and will get to do some work and get some fresh air and rest without someone checking my vital signs.  And I can walk slower so Lee can keep up.

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...

So - had to inject more cancer fighting miracles into my spine last night. So they gave me a more powerful mix to handle that and the nausea -it has adivan and benedryl in it.  This happened about 4:30 PM and I basically slept from 6:00 PM to 5:00 AM when the morning parade starts. Wow - wonder drugs.  Still feeling good this morning. Went for a long walk - around the same hallways.  But got my morning 1.5 miles in and got a coffee and waiting on breakfast and a bag change for the morning. Always good to feel good - hopefully can keep it going. One more day and we are out. So on track!!

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.

Got some big time goals for today as you can see from the nurse communication board - Basically walk without falling and manage constipation.  Such lofty targets.  Got my bran cereal, prune juice, drinking water and walking - plus the laxative. So I think we got this today.  Feeling good again -got a little more sleep but still not enough. Will sneak another nap in some time between the busy day.  Got a nice puzzle, music, and will work on listing the beach house on VRBO today which will be fun to figure out. Yesterday afternoon after my walk, me and the fucker went outside to enjoy a bit of sunshine.  Just stood there face up to the sun and a women driving by the entrance stops and rolls down the window and yells "looks like your enjoying the sun" - I say yes it feels awesome - she yells back "get that vitamin D, they don't stress that enough in there."  Random strangers yelling encouragement - one of the many ways we love Texas.

Ster - not Hem - the steroids started last night with the first round of chemo - the Rituxan.  For some weird reason the Rituxan makes me feel like I have had 16 shots of espresso.  So I basically sit there for 2 hours bouncing my legs up and down until the ride is over.  They think it will get better as I get used to it. Since the Rituxan is a part of both the big and little chemo battles, I hope so. Dr. Lee calls it the Rituxan roller coaster - you sometimes don't know how it will affect you. But it does give you the shakes. Remember the first shakes I got were the kind of massive feeling cold shakes. But now -just the hyper crawl out of your skin kind.  Progress! And the body will adapt. Dr. Lee is pretty funny - he says there are some variations to the batches too - like a gumbo - it's never quite the same. The hospital if full again. I guess my cancer is bad enough I get to the top of the list to stay on track with timing.  So you get your blood work, g...

So a combined thank you to all of you for the many (over 60 so far) cards that I have received since the odyssey began.  We have this small family room with shelves that I can sit here and look at all the cards and laugh.  This is what over 60 cards look like.  Really can't thank you enough. Definitely gives me a daily lift. Plus the family and friends have a rotating picture frame with all our pictures.  Also a huge lift. Heading back for Round #2 shortly - blood work then check in to my room for the next 6 days.  But when you know the chemo is working and you feel good and you know so much better how you will respond - gotta say I am ready to go!! Really didn't know how much of a control freak I was (cut to everyone who knows me probably laughing) - but the whole not knowing and not being able to find out much about the 5 day process was very annoying.  So now I know.  Day 1 and 2 will be great with the steroid lift - have to fight cons...

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...

To feel good on my birthday with both girls coming and no appointments or treatments.  I. Will. Take It!!!  How awesome is that.  Feeling good and surrounded by great people and tons of cards to open.  Just a great day. My counts are a little too low to go out for dinner but going to get some Truth BBQ brought in and enjoy a great birthday meal with family. Have to do a Pulmonary Function Test tomorrow, blood work and a meeting with our Oncologist for an update.  Supposed to go in Friday for more treatment - may be Saturday - will see. But today I get to be semi-normal.  Enjoy family, feeling good and great BBQ followed by a little Boston Cream Pie for my cake. Oh hell yeah.

Only got down to 1.2 yesterday so I couldn't go home which stunk.  But - got a pretty good nights sleep (as best you can here) and got rid of the nausea and the blood work came back 0.08 this morning so we go home today! Will get one last shower and leave more hair here that we don't have to clean up at home -silver linings baby. And Katie comes today! So all is good - didn't get the spinal done yesterday (doc here thought that was a little much since I still had the other chems in my bod) and have to figure out if they can change the dressing before I leave.  Day off tomorrow - then check in with Dr. Fowler on Thursday to prep for second full chemo which should be this weekend.  Think we are starting Friday. More to come -

So I registered a 0.15 this morning when I need to be 0.10 MTX in my system to go home.  So they won't cut me loose quite yet. One last round of pumping stuff into me and a blood test after lunch to hopefully show that I am at or below 0.10 and I can go home. Really need to get out of here. A little nausea today so we got the shot for that. A little worn out. But we also need to get the spinal before we go since that is due today. So many drugs so little time.  So they are working that into the schedule. So I am not getting out of here early or anything but outta here is definitely a plus. That way we can stay on track for a return on Friday for Round #3 R-EPOCH.  I figure there are actually 11 total rounds - 6 R-EPOCH and 5 MTX - total 11 (keeps the Spinal Tap theme as well).  So we are 2 down 9 to go. Most of the rest of the hair on my head stayed on the pillow this morning. So the baldness is almost complete at least on my head.  Feels odd - not too c...

Not easy to clock 1.5 miles walking the hallways but I don't want blood thinners and I want the MTX out so I can get outta here.  So we walk.  I am at a score of 1.5 MTX in my system after 24 hours which is good but not 0.1 - that's what I need to leave.  No one will estimate the timing because everyone is so different and they don't want to disappoint you.  So drink a lot, walk, pee - repeat.  They also pump an anti MTX drug and some potassium because I was low.  I ordered a banana with breakfast but they were out of bananas but they have plenty of pills. More irony. In many ways we didn't have much time to dwell on the fact I have a very bad cancer. We had to move fast and knew we had to stay positive to kick it and we know we are good at that.  But every once in a while it really hits you with the gravity of the situation and losing the hair and sitting in line at the barber shop was one of those times when you just get overcome with the emotion o...

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 ...

Feeling pretty good - got in the shower and the hair on the top of my head just started flowing down the drain. Knew it was going to happen but had kind of put it out of my mind.  But there it was going down the drain. Got to the hospital and the blood work is good and so the MTX is a go.  So hurry up and wait for a room to open up and finally just got settled.  MD Anderson has a beauty shop that specializes in rapidly balding people - so off we go to get a quick haircut so I can stop shedding everywhere. Was wearing a Navy shirt so she said, you probably look like you did on day 1 in the Navy - I said it was very close. And didn't look too bad!  Pics to come later. Still getting a dose of rituxin first followed by the MTX at around 3:00 AM.  Should be all done by 5AM - then it is time to flush it out.  Going to be a long night of high traffic in and out of the room. But then it is done for round 2.  Just takes time to flush. So back in the room ...

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 ...

Feeling more normal every day. Went to work which was just a great feeling to be there, get things done and feel normal. Wow.  And starving today - just eating throughout the day - everything looks and tastes good. Amazing Blood work was all on track - everything in range which means I don't have to stab my stomach with a shot any more! Yay. Obviously I think a lot about where we are right now.  There was an article about a gentleman from China trying to find a short term rental to get his treatment here. He was on a waiting list for MD Anderson and finally got a slot for treatment and now had to get here, stay here, transfer money etc. We drive 5 miles down the road. I got in to MDA within a week - all of which is critical because it didn't spread. Feeling good today in many ways.  Back to work again tomorrow.

Trying to keep the next 5 months in perspective. Basically have to stop life and fix this and I hate it. But, when you do the math, these 5 months are just 0.7% of my entire, pretty awesome, life.  Surely I can take 0.7% out of my life to make sure I have more. We are 10 days into the 150 day journey. Feeling much better yesterday and all things are on track (including the ol bowels finally).  So all systems go for now.  Just have to better expect the unexpected with this. Besides being 5 miles from MD Anderson, living in Houston has another perk - it's warm. So I can get fresh air and be outside. Felt great to be out walking the pups in shorts and a t-shirt this morning. Just awesome. Going to go to work tomorrow - will feel great to do that as well!  Normal rules!!

It was the worst of times. All in one day. Started out feeling great. Walked the pups, nice breakfast, got a lot of work done. Felt so good to work and get stuff done. Then I got ready to go for blood work and spinal tap and started to feel a little nauseous. Then the pain in the back of my head returned with a vengeance.  Then the pain in my hip.  Got the blood work done. And just started dragging. Luckily brought an anti-nausea pill with me. So of course things will work out at the hospital and I will get out of there quickly. Nope. The blood people didn't do the one test they needed to release the chemo for my spine. So they had to re-do the test. But of course pharmacy got backed up so it took another hour to mix the special spine potion. Finally - it arrives and all goes smoothly. As I feel worse and worse. Driving home I am plotting exactly how I am going to hurl from the car without dying or falling out the window (luckily these are skills we mastered first year a...

No post yesterday - felt great enough to get caught up on work which felt really good to do.  Better sleep last night and feeling even better today. Still some weird pains in my hip and back of my head - assume the bones are healing.  The nausea is way less though most food does not seem appealing. Would prefer not to take the anti-nausea and see if I can not have the headache today. So today we get the spinal tap - and blood work.  Blood work next Monday and then back in the hospital next Thursday. But it's warm, we went for a 1.5 mile walk with the pups had steak and eggs (don't know why that tastes so good). I am just 6 lbs over my Naval Academy weight which is a little odd so trying to pack on a little more food this weekend knowing it is going to get a lot worse. My "coaches" (the survivors who went through this) are so key in getting through this and helping me work through what is happening.  It is interesting that when survivors hear you have cancer the...

Yep - just got home. All is well and we got to bolt.  Don't have to go back for chemo 1B until the 14th which is huge as well (3 days in hospital).  We do have blood work and spinal tap on Friday but that's outpatient.  So it's home to recover!!! As all the mom's are aware - there are way too many food ads on TV, the paper, just everywhere.  Holy crap there is way to much stuff to make you want to hurl when you are nauseous.  Ew.  No wonder America is so fat. Also - I was so out of it last night it was rather funny. When they come to get blood they have to confirm who you are by looking at your little wrist band and then asking to say your name and birth date.  I was trying to wake up but really couldn't - so she asks me my name and birth date and I just What?  She had to ask me three times before I got it. Just needed that sleep so bad.

On the nausea front - just a hideous day - tried zolfram followed by composin but neither really worked.  Nurse says to try ginger ale and remember a guy on a forum saying it saved his butt and he actually wrote to the company telling him that ginger ale probably saved his life.  So, what the heck - sugar be damned - give me the ginger ale. And it worked.  Felt good in about an hour. So the combination of all the anti-nausea stuff works. Was finally able to eat.  Lee had brought my go to - a Trader Joe's crunchy no salt almond butter and raspberry sandwich on Dave's bread. So perfect for this occasion. Also, the timing of everything meant I actually got some good sleep last night - crazy. They came in to get blood at midnight and I was so out of it, I couldn't tell her my name and birth date when she asked. All the blood work came back good - so nothing there to hold up discharge. The nurse made sure they came at midnight instead of the usual 4:00 am so they coul...

So much fun.  I was warned and did get more anti-nausea but main not fun today. Only had an apple so far so not much writing today. BUT I get out of the hospital tomorrow. Last set of bags should finish at 8:00 AM, have one more bag and we are out of here!! Until Monday - they I have to come back for the quick hit chemo for three days in the hospital again. Lee passed the dressing test - so she can flush my port lines and change the dressing on the port so we don't have to come back for that.  She did awesome. Christine and Lee are going to give blood since we get a blood discount if we are replenishing the stock as we use it - so that's helpful. Just ready to be home, sleep undisturbed, smell non-hospital smells, have the puppies around and keep things moving.

Doc O the Day just flew by and said yes - I am doing great and things are on track to get me out on Wednesday. Oh glorious Wednesday. I can sleep in my own bed not hooked to some fucker and not getting blood drawn at 4:00 AM.  And they can't use the ports installed in my arm because the chemo would affect the blood sample. So they have to stick me twice a day to ensure I look like a proper heroin addict right about now. Add the blood thinner they inject in my stomach before dinner and wow - I love the needles. But I feel OK. And blood work looks good - White blood cells - 7.9   should be between 4-11 Red blood cells are low - 3.69 should be 4.5-6 Platelets - 304 should be between 140-440 Hemoglobin - 9.9 should be 14-18 But nothing to worry about - all is on track. And I am still good for Wednesday. The change of chemo happened later this morning at 3:30 and actually should be starting at 6:00 this morning so I could, in theory, get some sleep. Bruce Willis movi...

I have cancer and I feel pretty damn lucky right now.  We live 5.3 miles from the best lymphoma center in the world. Got a lymphoma doctor who is a world leader and also specializes in brain issues from lymphoma. My platelets are looking good. And I can feel my tumors - most people cannot - so I know this morning that the lumpkin twins have shrunk considerably.  They are half the size in the groin and I can't feel the one in my chin or the one in my left armpit.  Do you know how good that feels?  And #meandthefucker walked for 1.2 miles after a stretch and situps.  Day 3 of chemo and I am almost doing my normal morning routine. And I took a small poop. Victory over the bowels. But the most brilliant luck is something only I could conger up - I went to pee yesterday afternoon (they have to measure so I have to pee in plastic holders). Of course to accomplish this I have to unplug the fucker, wrap his electric cord around his scrawny neck and go past the bathr...

Actually doing ok sleeping right now.  There is a lot less pain in my bones which actually makes it easier to sleep.  And the drugs are not doing anything to me that bad.  So we started with the Rituxan and the build up the dosage. One of the common side effects is you might get chilled.  Yeah - I got that.  It was like someone through me outside in Chicago with no clothes - I was shaking like crazy - they had to get hot blankets and warm me up. Didn't hurt or anything - just so weird.  Once the body got used to it - they jacked the amount more and we finished up last night. Then they strapped on the other chemicals to my cart.  I have nicknamed the cart Fucker because he really is. Such a pain in the ass. They leave it plugged in the whole 5 days to reduce infection chances which does make sense. So here are all the chems dripping in now. The four horsemen of LIFE!! I went down to coffee and another patient looked at me like I was nuts running ...

Spinal tap came back negative - but the docs are puzzled - there should be something in there so they are going to run a more refined test to check. And we might as well still dump some chemo in your spine right now anyway because better safe than sorry.  They keep raining on my very little parades. I mean jeez - a little good news and they are like - meh - still pumping more chems in you. So second spinal test is done and the first good news in a while - spine is totally clean!!  So just weekly spinal methotrexate to keep the spine clear. And the chemo has started - lots of premeds to counter the side effects.  This is supposed to be the worse om the rituxan.  But half way through the bag and OK so far.  They have to take vitals every 15 minutes at the start so I am now glad I didn't last night. They are slowly upping the dose very 20 minutes until they max it out. Pretty nervous today about the unknown but just so relieved that we are finally started -...

Couldn't get the cardiogram yesterday so no chemo - just hooked up to the machine for other fluids.  Got Ok sleep - it's a hospital - but hopefully cardiogram and drugs this morning.  dammit. Took my machine walking this morning.  Have to get used to it and it is not light - so we went down to the "park" which is really not much but did a bunch of laps around it and got a coffee as a reward. Found the old fitbit and brought it back to life to make sure I am walking or doing something - way too easy to lie around in the hospital bed and become a veg.  Doing some work this morning after the walk.  Got a berry and yogurt breakfast coming up.  9:30 AM schedule for echocardio - so I got that going for me.  First round is a tough round.  yay. Me creeping around the hospital to earn my Starbucks at 7:00 AM with the damn IV machine - my new best buddy Will keep you posted -