Saba Beats Cancer

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...

Another late breaking side effect was revealed during last appointment with our LPN - we were discussing the side effects and she asked if I had noticed my thigh muscles getting weak. Apparently that is another fun thing from the steroids in our chemo - it starts to weaken those muscles.  So we are adding some squats, step ups, lunges and leg raises to the daily mix to try and counter act that new fun one. I did notice on the walk today that those muscles are weaker.  Doing the tennis ball squeeze has definitely helped with grip strength. That was really getting weak as well.  Last day before chemo #5 - going in tomorrow afternoon for a late appointment with the doctor. That means a late admission and late chemo.  Luckily I am getting good at sleeping through that.  Mouth sores are gone finally - which is good. It definitely comes from the methotrexate chemo round (brain chemo) and I only have one of those left in theory.  Anxiety creeps in my bra...

As expected - the MTX was in the right level and I got out of the hospital today and heading home.  Looked in the mirror and noticed my eyebrows are almost completely gone.  Oh well - knew it was going to happen. A lot of the body hair is falling off as well.  Such is the chemo life. Feeling a little a tired as expected as well. But just so good to be home.  I have now spent 40 days and nights in the hospital.  And only have 16 days left in theory.  Two 6 day R-EPOCH and one last MTX. My numbers bounced back up on everything except white blood cells - so was glad to get out and get a shot of zarxio today and get those boosted. Schedule for the next week is blood test on Friday and go back in for R-EPOCH on Tue-Sun of next week. So a nice break. Well needed and deserved. Need to rest up.

After I got home yesterday I realized it was the first time that someone on our care team at the hospital talked about post - chemo life.  She said only two more -then about 21 days after that chemo you will think you will be feeling great.  But by August/September, you will remember what feeling great was really all about. Didn't dawn on me until later that we are finally talking about a post-chemo world. It just seems all we do is focus on now and the latest side effects I have to battle that we forgot that the post-chemo world is finally coming. It is still 39 days away from the final day of chemo. But getting there. Yesterday was definitely different. After feeling so good on Monday I guess I was kind of shocked to get slowed down a little, have trouble with fatigue and a constipation. But today back on track and feeling solid. So we move on. We visualize August and September feeling great and try not to focus on the next chemo run. 

Cannot believe what a great day it is. Slept well and then went for a long walk with the pups and Lee for mother's day. Then sat out front in and read the paper.  Did my daily routine and just feel good. No nausea. No fatigue. No mouth sores. And it's the day after chemo.  Crazy good. Also - decided to stop being stupid worrying about chemo 5 and 6 which were stressing me out because I "heard they were bad".  But then I breeze through 4. And met a lady yesterday who is older and had more complications than me and still not in remission who was just finishing 5 and was doing 5. So I choose to believe I got this shit down and the daily thang is going not only kick cancer but kick chemo's butt.  I am I seriously haven't felt this good for so long. It is just nice. We are going to ride bikes down and get ice cream here shortly. Hope ya'll have a great Mother's day as well!!

Nausea got a little intense so I had them give me the adivan and was able to eat lunch and dinner and then slept like the dead through the intense storms last night. Got the last bags of this set on at 8:45 so still on track for getting out before noon tomorrow. Not much going on - spent some time on the blog making it searchable for anyone else that might have lymphoma since we think it might help someone.  So will see if that helps get the word out.  Continuing working, finishing my list of things to do each day and doing the paint by numbers which is great therapy. Starting the dry brush today.  You brush from your extremities towards your lymph nodes.  It exfoliates and builds circulation which is how it is supposed to help you detox.  I gotta admit it feels pretty damn good so as long as it feels good and I believe it is helping - it's helping. On to the rest of the day.

So you don't always realize what my be affecting your psyche. Something as simple as shorts.  I have been feeling a little bad about the weight loss.  The other day Lee finally had it. I had lost some weight before this whole debacle so my shorts were not quite fitting right.  Last week we went to walk the dogs and I put my phone in my shorts pocket, walked down the steps and my shorts fell down to my knees.  She went out and bought a bunch of mediums to replace the larges. And I immediately felt so much better about myself.  I had felt like I was wasting away and looking like most cancer patients and I felt really bad about it. Wearing shorts that fit and seeing that I actually look like I should and this weight is actually my ideal weight made me feel really good about myself.  Felt a little stupid - but it is amazing what will make you feel good during this journey. And the staff is amazed with my painting. My cousin got me a very involved, very deta...

So yesterday was great.  My list is so long of daily stuff that it does pass the time.  I had just finished my walking and for the first time I did my deep breathing outside here at the hospital.  They don't have many good places outside for patients with fuckers (IV machines) but there is one bench. It was occupied by another patient. This is rare - no one but me goes outside.  So I just stood there near the entrance and did my deep breathing.  I am using the Calm app to do this and the meditation. So apparently Dr. Fowler - our awesome doc - has the rounds today and sees me on the way in. Tells me later, I saw you but didn't want to break your meditation.  Pretty funny.  When he makes the rounds, he brings 3 other docs that are shadowing him because he is the man.  He says - I showed them your scans including the MRI - and he still nods his head and says "Man, that was crazy" - all the other docs nod their heads too. Another reminder of how ...

My packing for the hospital gets more involved as we now know what we need to make the best of it as possible. It is pretty odd that they don't have good blankets in a place where people need to stay warm sleeping. And they want you to stay hydrated and give you a 8 ounce styrofoam cup which is useless. I bring a large insulated cup to hold water so I drink more. Also, I luckily had good nurses on day 1 that told me I didn't have to use the useless hospital gown and could wear my own clothes.  Of course I bring my speaker, a small puzzle, two books, sumo band, a good liquid shower soap with moisture, baking soda toothpaste to help with the sores.  And now we bring my own food.  That has been the second big key. As I read more about detoxing the body from the chemo - dry brushing has come up and been advsied by a couple of people.  Anyone have any thoughts?  It's another quick and easy thing to add to the list and a brush costs $10 on Amazon so why not if it ...

Feeling great again - a little stressed about going back in for #4 tomorrow but easing that with the breathing and meditation.  It is gorgeous here. Sat out front and listened to our new fountain, read the paper and had a big breakfast.  Going to finish the lawn and my daily routine. It's is great to have nothing going on in my body right now in prep for the next onslaught of chemo.  Such a great feeling. Sorry this is getting boring - by my count we have 48 days to go of treatment followed by recovery.  That number does not seem as daunting as before. I just looked at my zarxio to receipt for the first time. The price for 5 doses is $2,700 - yep $540 a dose for the magical elixir to recover from chemo. We are so lucky that our insurance covers 100% of that.  Thank you Blue Cross Blue Shield of Texas.  I don't know how many shots I have taken but it is over 20 so far so well over $10,000 in cost just for the zarxio.  So take it from - get the goo...

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 build up is finally hitting.  The mouth sores are real.  Got hit with fatigue now that means I nap a lot. And I got my first hemorrhoid!  Woohoo! Heard about how the chemo builds up and I guess doubling up means it finally hit this week. But it's tolerable. Sounds bad - but not like most people endure so I can handle it. Still get a few days off before chemo #4 on Monday so I think I can recover by then. Doing my zarxio shots in the stomach and all the other things I am supposed to do to keep rolling. Blood work and doctor's appt tomorrow. Usually I say nothing is wrong - now I get to tell them things are happening.  So we will see!

Always glad to be home. Such a great feeling to get out.  Blood work came back good - it just always takes three days so we know that and can work with that. First time I had actual mouth sores - not horrible - but a few and a lot of dry mouth this time which I did not have last time. Nausea on day 2 just like the last two times but did OK with it.  All in all not a horrific experience and doing the rinse to get rid of the sores at home. I did get another spinal yesterday and manage to hold off napping until it was over. So that actually worked out well. Back on the zarxio because my counts always go real low right now - so not going anywhere in public.  Need to stay healthy so I can go in for chemo 4 on Monday. So the battle continues - get my strength back and get ready to rumble on Monday

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...

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...

Early and quick morning. No spinal which was great and I don't have to go back to the hospital until Thursday for blood work and meeting with doctor. I am on the schedule for brain chemo #3 - apparently they like to do 4 of those.  So I will go in Friday through Monday. Then back in for chemo #4 the following Monday. But this week seems a little easier than past weeks. No nausea, still very tired and my immune system is way down - but it is a nice break from past weeks. I guess we are in the groove towards the cure - and will take it.  Not much to report. Nothing funny happened. Just waiting on Thursday. On the plus side we had our first guests at our Vrbo and it all worked like a champ. Lee did a ton of work which resulted in a 5 star review for the property. We are booked pretty solid in June but no so much in May.  Just glad to get that going. So cool to see.

So the blood work was good today -really good. I am waiting to check in. Always takes a while to get a room here. While I was waiting for my doctor's appointment - they brought me back to ask if I wanted to participate in a clinical trial where they look for biological markers to determine if you have lymphoma after remission. So basically they are going to take extra blood each time I get blood drawn so they can test for these markers. Obviously they need something better then a full blown PET scan every time.  So - they really need to determine if there is a blood test for cancer. Would be pretty cool to help them do that so heck yes you can take more blood - I got plenty. So on to our normal Chemo #3 today - starting the halfway point!  5 days of chemo - R-EPOCH - starting with the Rituxan tonight. Feels a lot better hitting the chemo knowing we have made so much progress. We don't come back for an appointment with our normal doc until the 25th - then we will hear i...

Interesting conversations this weekend with various family. There are times when I feel so close to normal and we are doing normal, non-chemo things that you actually almost forget that we are in the middle of the battle.  Then I look in the mirror and it is really clear that I am not that normal. Even Christine said this weekend - that I sound normal and we talk about everything but cancer and it seems like it did in December. And then someone asks and she is like - oh yeah - we are doing that cancer thing. But it is so cool to be normal and I am having more normal time this treatment so that is a good thing. But there are those not so gentle reminders. Some new odd things - I have no more hair in my nostrils. But you begin to understand their function as my nose just randomly drips down my face.  My eyebrows have thinned considerable and will probably not exist soon. More random - I did not have a great sense of smell before and now it is very acute. That is not real...

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.