Saba Beats Cancer

Been a while since I posted and I have to tell you that beating cancer is phenomenal.  First, while I was laying there in the hospital at MD Anderson getting chemo (over 50 days total) I had a lot of time to think and one of the things that I wanted to do when I get over the Lymphoma was to help communities in need.  I found Team Rubicon while I was lying there - and you have a lot of time to google stuff while getting chem for Double Hit Lymphoma - and I decided I would join when I got out.   And I did - and did my first two deployments with them. You can read about it here: From Cancer to GSD GSD = Get Shit Done - and that we do. AND now, I am riding with Navy 83 Ride Across America - a group of Navy 83 Grads who decided to cycle to their 40th reunion.  I have been getting in better shape since chemo and I feel like this is a great statement on where I am 4 years after I finished chemo - to ride 585 miles from Toledo to Annapolis averaging 70-80 miles a day....

A year ago on New Years day 2019 I woke up with a large lump at the top inside of my thigh. It may have been growing for a while but I noticed it for the first time that morning as I woke up.  We had toasted the New Year's with champagne and were full of excitement about what 2019 would bring - so much promise and not a real care in the world - which was immediately dashed with a diagnosis of stage 4 lymphoma, double hit, with lesions in my skull, spinal cord and hip. And I had to go through hell to get here - but here I am. As you make your New Year's resolutions - please stick to them. Because you seriously do not know what you will wake up to tomorrow. Love your family - keep them close - almost losing them is too much to bear -  believe me. And I needed all of them close to get through this.  Love your friends - the prayers I got from around the world are a big reason I am here You need your health - the chemo will kill ya just as much as the cancer it seems ...

We gave away the last of the cancer supplies to another person doing battle so that there is nothing in the house to remind me of our journey through cancer. My hair is actually filling in and has a little color  - it has a lot of white there - but also some color. The sinus issue that made me think of brain cancer is gone. Food tastes so good again I have gained back 12 of the pounds I lost - and I could easily gain it all back if I don't slow down. So basically I am a normal guy again. So it is time to put the blog to bed as well. I will still post after scans (October 21st is already on the schedule). But if I put cancer behind me - there is no reason to blog. One last thing to post is that people ask if the ordeal changed me and I have to say of course it changed me. You don't come that close to losing your life and act the same. I am more patient. I looked at the blue sky both mornings this weekend with awe and appreciation. I bought Lee flowers at the farmers market -...

Picc line coming out today. The final scans are all clear and I am cancer free.  So amazing - so much support, love, prayers and amazing medical got us here.  I started this blog in February that Saba Beats Cancer which seemed a little arrogant at the time based on the bad cancer we had but we did!! HELL YES!! This last few weeks has been stressful to say the least - they call it scanxiety - waiting on the scans where every ache and pain feels like cancer returning. I have dealt with this damn picc line since mid February having to flush it every day, change the dressing each week and put a shower sleeve on it to shower every time.  So sick of this damn thing that you cannot imagine the feeling to get rid of it. The last piece of being a cancer patient being removed. Now that is amazing!! Let's get back to living. Going out to our favorite Italian restaurant tonight and an Astro's game this weekend. LIFE!!

I got this great note during the last full moon from Pete that his daughter had gone to a yoga instructor course and there were some of the participants there who told her that during a full moon you can banish negative things from your life by writing them in red ink on paper and burning them in a bonfire. So they did that with Dave's cancer last full moon.    He reminded me that tonight is also a full moon and never one to miss an opportunity to have things weigh in my favor - I will be banishing my cancer in the grill fire tonight. It is the night before my scans and why not a little pagan ritual to go along with the prayers.  So annoying that the scans are tomorrow afternoon but the doctor's appointment with the results is not until Thursday. So a little tense waiting until the appointment. Yay. But feeling great - no swollen lymph nodes and no headaches/double vision - so things are looking great for tomorrow. And with the cancer banished in flames - how can I ...

What a great feeling to have hair growing in the right places now!  Eyebrows, eyelashes and hair on my head all coming in nicely. Hard to believe that it has only been a month since chemo ended - because things are so normal. On Friday I actually got my first full paycheck since February - now that's a good feeling! Based on all I read and heard from others, I am way ahead of the game on recovery working 8 hour days and doing very well.  Every so often I get a feeling like chemo side effects but then it goes away.  So other than that I am doing great. Side note on the blood work - the webisphere was correct - cranberry juice does help the kidneys but my platelet count went down. The only thing on my blood work that went down - I was still in the good range so no big deal, but important thing to note. And it's probably good that the beach house is rented through August - we won't be able to use it until Labor Day weekend - so guy recovering from cancer just died fr...

All is well in my blood again.  And the numbers keep getting better. While my hemoglobin and red count are still a little low, they crept ever so closer to the good range. And those damn creatinines kept going down at the right pace - and should be in the good range by next week. So all in all more good news. Next week is the big week with my MRI and PET scan on the 17th followed by the doc on the 18th. I ran into a guy who was a step ahead of me on the double hit lymphoma party. He had is first scan after chemo 3 and still had just a bit of cancer left in his lymphs at that scan. He just found out that it kept growing after that scan and even though he is down with chemo, he has to go for another fight. They are debating T cell or Stem Cell. Prayers for him. And of course that scares the hell out of me as well. But my scans were clean so we should be good to go. But will be saying a few extra prayers myself.

And actual boogers - I know that is not thrilling to most but when the alternative is your nose running for the last 4 months, it is awesome. I have actual nose hairs and the tiniest eyelashes have just sprouted along with a lot of fuzz on my head. I actually shaved this morning because I needed to. How awesome is that. And I did feel even better this morning walking the pups. Our nurse said even when I thought I felt good early on, that I would feel even better.  I will admit that I had some sinus issues last week that created a sinus headache which made me feel like brain cancer was back. That's what you get with cancer - feeling like it might spring back into life immediately.  But that went away yesterday and still no sign of it today (when it was in my brain it never went away). 10 days until the scans and port removal.  Cannot wait for that - continuing to put on the shower sleeve and not being able to fully enjoy the pool has been annoying - but only 10 days ti...

So MD Anderson did forget about me. I was supposed to get blood work done weekly. I reminded them Monday and they immediately set an appointment for today. And my blood work is good. White cells and neutrophils are in the good range. My red blood cells and hemoglobin are still low but coming up significantly.  Platelets are good. My kidneys are still not healed completely. Creatinine has come down from 1.8 to 1.46 but should be under 1.  So still a ways to go.  Even with enjoying cranberry juice - we are still healing. It is funny to feel so good yet know your body is still recovering from the brutal onslaught of chemo. Not a patient guy.  I asked how long I would have to take antibiotics and the LPN said probably three months.  I thought it would be when the white cells were back - but apparently not.  He said to check with the doc when we have our appointment on the 18th. So - still recovering.  Sigh. But doing pretty damn good.

Worked an 8 hour day yesterday and on track today. Not feeling any ill effects of the working world - just the opposite. Just so charged up to be here and feeling better every day. So that works!  And it is a 4 day week with a nice respite on Thursday which should help. Lots to do in a job I love - pretty damn good. The fuzz on the head is starting to come in and the port is still in my arm and annoying. The last two crappy chemo things as a daily reminder. I have 17 days until my final scans and they yank the port. But sooooooo many positives. Actually planned my first travel to go to the Naval Academy as one of my classmates and friends is taking over as Superintendent. I probably would not have gone before - but it is going to be a great way to see a lot of guys and say hi and give them a hug for their support - so why the hell not. No big plans for the 4th - get some stuff done around the house, swim in the pool with one arm up in the air with a bag on it and have a few b...

Made it to the beach and it is outstanding.  The nurse said at 3 weeks I wouldn't even remember how good it feels and she is right. Been three weeks since the MTX and no dry eye today, no runny nose, more energy - just feeling better every day. And I caught my own bait and caught one fish. Had to come in after that as don't want to overdo it. So one thing we forgot when we rented the house was to take the Roku with us. We left it here. Leave it to the kids of our renters to figure it out. So they decide to watch Netflix but rather than use one of our profiles, they create a new one - called "The Guy in the Attic".  So Katie freaks out and calls us because it is really kind of creepy.  Is there a guy in the attic watching our Netflix?  I don't remember leaving the Roku at the beach house so it is a mystery for a while until we figure it out.  But a very creepy start to that day. Will take the Roku with us this time. So the progress continues - no nap yester...

So - made it through a week of working half days with no issues. A little tired but no set backs which is HUGE.  I will take it.  Lee changed the dressing on my PICC line - still annoyed it is there but on well.  Also - I think they screwed up since I had no blood tests this week. I didn't remind them yet because I wanted to go a whole week without going to MD Anderson for the first time since February.  Absolute heaven.  Seriously. No hospital for a full week - crazy good times. Will remind them today so if I have to go back it will be next week. Scans are set for July 17th with doctor visit on the 18th.  All cancer patients (including this one) are always nervous even though I know I am cancer free. It is still there hanging over your head. Feeling better every day.  Had a little bit of tinnitus, still a little dry eye, running nose and damn this hair is taking forever to do anything. I want to be me now.  Instead I will settle for headi...

Yes - I am actually at work. I actually got a doctors note to work as is required as I end my FMLA - which is family medical leave and not what millenials think of when they see FML. At work and it feels phenomenal.  I am only working 4 hours a day this week and then resting. Will work 8 hours a day next week with only a 4 day work week.  Making sure I take it easy and have plenty of hand sanitizer and still taking antibiotics.  A few side effects lingering - the dry eye every morning, and a little tired - but that is it. Other than that I am a normal bald guy with no eyebrows or eyelashes.  Taking some vitamins that I will will accelerate the hair growth. We will see. The girls are still here and we have had some great discussions about weddings and futures and boyfriends and moving.  So nice not to talk about me and my health. Tonight we are going out to a new place for dinner.  So excited. And we are heading to the beach this weekend and I may ev...

So I had a beer and a glass of wine Friday night and both tasted great. Might have been a tad too early as I felt a little off on Saturday, more tired, and had the night sweats Friday night. This is the first alcohol since mid February. But I think I will hold off another week before trying again. Felt great this morning - have the girls in town for a father's day today. Went to the last coffee shop in the area we had not hit and then walked to breakfast near our house. Just absolute heaven. Being normal again is so amazing and feeling just that little bit better every day. We actually started planning a 2020 vacation - so very cool. Last thing I need now is to get this PICC line out of my arm. Nurses have not responded yet to my email request so I will push again on Monday.  So nice to be going to work rather than the hospital tomorrow - just amazing what has happened in the last week. And this is the longest I have gone without chemo since March 1. My body needed the break ...

So it's been one week since I finally got out of the hospital - and tomorrow will mark the first time since March 1st that I will go 8 days without a bag of chemo hanging from my arm.  Jeez. Still doing all my detox stuff so that I can get even healthier. Imagine waking up knowing that you will feel better than you have in 5 months. Every day for the next week or so. It is pure heaven. And we went to coffee shop number 3 this morning. It was a little far so just drove over there, walked the pups and sat outside and sipped my coffee and had a great egg taco.  Absolutely grand. The hair is coming in like an 11 year old going through puberty. All peach fuzz on my face and head. And it is pure white - I mean no color whatsoever.  So the first round of hair should be interesting.  Don't care as long as it is growing which means there are less toxins in my body. We did add wheat grass to the mix because there are indications it helps with detox and a couple of ladies...

Ring the bell on the chemo - we are done!  On Sunday, based upon the issues with the methotrexate and my kidneys I emailed Dr. Fowler and asked - since I have been in remission since chemo #2 and I truly believe that no cancer cells could survive the onslaught at this point - do I need chemo #6 (actually chemo 11 at this point) or is the risk to the kidneys too much? He called me on the way to the airport and said that is a good question. He has had 7 patients who ended early and all are still in full remission.  So I asked the question - is there a compelling reason to do #6 - he said he would consult with the very doctors who developed R-EPOCH and ask.  Well apparently at dinner at the big cancer conference last night they discussed my case. Their answer on whether I needed chemo #6 based on all that has happened from those that know the treatment the best:  "absolutely not". So no more chemo. He called me from Switzerland as we were walking the pups on the w...

For the first time in forever, I have not doctor's appointments on my online MD Anderson schedule.  This is a HUGE first and feels pretty damn good. BUT I still had to go to the hospital to get my dressing changed on my PICC Line.  Lee is trained to do this but we ran out of the supplies to get it done and need a new prescription for it.  So I drove down there like a normal guy and got it done. If you missed my classic rock concert on I-10 on the way home, you really did miss something.  How cool is it to be driving around like a normal guy.  Albeit with tubes coming out of his arms, a little off on the stomach and dry eyes - but pretty damn normal. Still waiting on what to do about the kidneys. But we can wait.  And live a normal life.  Yay. These type of days are numbered - have to get back to work soon. So we made the decision that we need to take advantage of it while we can. We are hitting one of the many of the coffee shops in the area each...

Feeling even better today. With the exception of my kidney readings, my blood numbers were really good yesterday and they stopped the zarxio. They always give me too much - don't know why. Mouth sores are almost gone and not impeding eating (and I finally had coffee after 5 days without) which is good because my appetite is back too. Got down to the lowest weight again - the usual with the evil methotrexate. Lee got me some cake and ice cream to push that back up. Exchanged emails with Dr. Fowler again on what is next. They have delayed chemo #6 a week to figure out what to do with the kidney issue and see if it improves. He is consulting with Dr. Wilson, who basically pioneered the R-EPOCH regimen, on my case - which is pretty cool. I think I mentioned it - but the survival rate of the fairly rare cancer I had was pretty dismal before R-EPOCH.  And this has only been a couple of years now that they developed it. And now the survival rates keep climbing as they get better and b...

So the kidneys are still doing the same thing - just a little bit better on the numbers which is a good sign but not good enough to take another chemo. So it is on hold for now. Luckily I had reached out to Doc Fowler just before he left for the big cancer conference in Switzerland. He is meeting with the guy he first invented R-EPOCH and said he would discuss it with him. So - the mouth sores finally are getting better. The side effects are finally getting better and things look good. Will probably have another blood work on Thursday and know more then. In the mean time - it is nice to finally be able to eat dinner and start to feel normal.  By Thursday - all should be much better

Woke to a better day and a happtly father's day.  Went on the two mile walk with the pups and Lee made me some whole wheat waffles which were easy to eat with the mouth sores.  Did some things and then watched women's soccer which is just amazing. So feeling a little better - still scared about getting more chemo on Tuesday to be honest with how my body is now. But we will talk with the care team tomorrow after the blood tests.  Now both feet have pain and finally figured out it is neuropathy caused by chemo - the walking should help and it was a little less painful than yesterday.  So more rest and prep for the final battle - late post tomorrow after the blood test and see if the kidneys are doing any better!