Saba Beats Cancer

So - not going in the hospital today. There is no room and my doc said I could wait a day. So I am on the list for a room tomorrow. This is an ongoing MD Anderson issue - they are always crowded. We are so lucky to live her that I can wait at home for a room. The waiting area for rooms is not all that great. So that stinks - I was ready to go today and get the MTX over with. But it is what it is.  Get another day home to get better before I get hit again.  So not a bad day - a little tired - but still OK. On to tomorrow - will keep you posted.

The first Sunday in June is National Cancer Survivor da y.  According to the website it  "is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community." There are great inspirational signs all over MD Anderson.   You are a survivor the day you are diagnosed. I can absolutely say that you are not just surviving cancer but surviving treatment.  And we started treatment March 1 - so we have been at this for three months.  And I feel pretty damn good as a survivor.  Sunday, June 2nd marks 9 chemo treatments complete (more if you count the 7 spinal treatments) - a brutal pace for the three months. That's 46 days in the hospital - 46 days and that is not easy. But it is working - remission after the second chemo.  9 out of 11 - that seemed so out of reach a month ago and yet here we are. Survival.  But there are 2 more to go.  21 more days...

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 n...

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...

I guess you do settle into a groove. It seemed that things were so much more hectic before that I had now  time to breathe and catch up. Now it seems like things are moving very slowly. A snails pace which is not overly bad. At least I get some time at home. And I am working at home. The blood cells are still down so I don't want to pick up an infection at work and have a set back. Not really worth it since I can do everything by phone and email. The nurse yesterday did dash my hopes for early release saying they just do the six chemos no matter what. Seems a little counter intuitive to MD Anderson's claim that every treatment is customized but since.  But when Cancer, like Apollo Creed says - "Ain't gonna be no rematch" - I will take the Rocky approach - "Don't want one". So we are half way there. Two months in and getting some of the other fun side affects like tinnuitis (everything sounds really harsh), a little neurpathy (tingling in the fi...

On top of the great news on Friday, we also got the news that my blood count was too low for chemo.  So we got some Zarxio and go inject the stomach all weekend and try again on Monday. I must admit that after the great news and feeling pretty good that a weekend off of no hospital was exactly what I wanted. So we stay at home and give it another go on Monday - will be the 6 days in the hospital for chemo #3!  I think we need to push for no more mid-course methotrexate since there are no brain issues and it keeps pushing back the standard chemo. I did look up what it means to go in remission early - and I am sure my 15 minutes of googling will be invaluable to my doctor who is an expert in his field, has med school and 15 years experience - but it does say that chemo usually goes 2 sessions past remission to make sure you clean up the cells. So I am hoping for a shorter sentence.  But at this point I don't care. Also, interesting that a high school classmate who i...

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.

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 ...

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!!

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...

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...

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...

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...

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...

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!!!!!