Sadly

The Cancer has returned. More pervasive than ever. Been a hard few months as through my training to get my body stronger I could feel it returning. Plan now is to knock it out using a newish drug, SGN-35. I have already have had one dose last week and it is kicking my butt. Lost 10 lbs in 6 days with the yaks. Sad given it is supposed to be the non big side effect drug. I get a PET scan after 2 doses and then we go from there. Doctors want to go towards an allo treatment where I get the wbc of a donor but as of now I have decided I am not up for that given how tired I am. And will try to hold remission from SGN if it comes as long as possible. Please pray for me and my strength and ability to handle more SGN-35 as I can feel it working and shrinking my tumors. As the doc said not too many more options after this so a scary outlook for me. I am thankful for all of your prayers so far and for lifting my family up in your thoughts as I am not ready to leave just yet. Have a ND National Championship to watch and many more silly adventures to go on. All our love, Charles, Emilia and the man missing 2 teeth Aidan Paul

A good reason to sign up for the bone marrow registry

Just a great video.

It is alive--Sgt. Hulka Returns

First, thank-you all for your e-mails, cards, pictures. To wake up every morning and to see a full e-mail in box or to look to the walls and see photos really kept me going. No words can explain how important this support was for me wanting to get up each day and fight through some very hard times.

Now onto the facts. I am day +21 from my transplant and I am feeling better everyday. I am still wiped out. Running at about 50% and eating 30% of normal which is probably good for me. Lost 25 lbs in the hospital so getting closer to the target weight. My docs think I am doing great though and should be at about 100% at day +100. They are monitoring my counts almost daily and they say if things continue to go well I should be able to go home early next week to be monitored by my San Antonio oncologist. 

Also in the good news category I met with a radiation oncologist yesterday and she thought that the risks from radiation to the areas that might benefit from it would outweigh the benefits. I feel like the old body just needs a break after almost 2 years of chemo so this was certainly a whew moment after being told I would be needing radiation shortly after transplant.

As far as the transplant for those that are interested in more details please e mail me but certainly not something I would ever wish on my worst enemy. Not a fun experience. At the low points I pictured Dr. Mengele telling my docs "don't you think you are overdoing it a bit with this patient" ha. 

More later but I am again so thankful for those that e-mailed and sent cards during the process, they really helped keep me going through some days I didn't think I was going to see the end of the day. Onward and Upward and am so excited to get home and continue to get stronger everyday. 

Nuclear Chemo begins tomorrow, T minus 7 days until I get my cells back

I feel like Andy Dufresne from Shawshank my room is so small. As you can see by the attached video Emilia and I will be in close quarters for the next 21 days. Good news is that the final cleanse has begun and I am 7 days out from getting my new immune system. Hydration today, 6 days of fun chemo  begins tomorrow and then I get the cells on the 26th. Then another 2 weeks in the hospital until my counts are up. 2 weeks at a hotel close by for daily blood tests then I should be able to go home for house arrest for a few months. Doc thinks I will feel relatively decent by Halloween and by mid January will feel like I did before I had cancer.

I am surprisingly calm, now that I am finally in the room. Think knowing that this is the final stretch helps. I am also amazingly tired given all of the stress of the past few months to get to this point. From Aidan being in the hospital twice, 3 rounds of chemo, fits and starts with the doctors, too many tests to count . To be honest I think it is a true miracle I sit here today in complete remission and able to begin this journey. I truly feel it is only through the prayers of others that I even had a chance.

Everyone has different experiences with stem cell, for a lucky few boredom is the worst element, for most others they puke themselves silly and are unable to make it to the bathroom on time. Regardless it makes you tired and not too up for typing or e-mailing. Given I am stuck inside in a room and the halls of the 11th floor here at MD Anderson for the next 21 days be great if folks could send on any funny you tube videos or articles they find to help pass the time. charles.a.cavanaugh@gmail.com Thanks so much for all of the prayers, could use some of those too.

Please pray for the A man as well. He is off on an adventure with his abuela and a few of Emilia's aunts to Guadalajara for some therapy and nice weather. It kills me being away from him for so long but I am excited for the day he and I are back under the same roof and laughing at dinosaur train videos.

Stem Cell finally here

After one too many stops and starts looks like this is the week I check myself into Hotel MD Anderson for my new immune system. An Aidan seizure and Emilia and I coming down with colds/flu led the docs to push this back a week. But now feeling fine and Aidan back home from the hospital we are good to go and ready for the battle ahead. Will keep everyone posted as we learn the actual schedule. I am ready to get going and get the battle started.

Complete Remission Achieved

A week home now to relax, a week of tests then in for the nuclear chemo to destroy this faulty immune system and a reboot, returning freshly scrubbed cells to me. A couple weeks in the hospital until the new system is up and running. 2 weeks of sticking around Houston for daily blood tests then a few months of home quarantine where all I can eat is heavily nuked food. Then Vegas with John Winger, Cousin Eddie and John Goodman. All are welcome to join.

More fun stories to come as this week has taken it out of me.

7.9M cells

Got the call a bit early that I was ready for collection(Hey so can you come down here in about 14 minutes to get this procedure done) so yesterday they sucked out 7.9M stem cells from me. Doc said they needed just 5M so I feel very lucky not to have to go back for a 2nd day of collection. The nurse was great, explaining the whole procedure to me, showing me the machine and everything. Apparently at one time they only have 2 cups of your blood outside of your body being scrubbed for stem cells as anymore would make you faint. Only side effect was feeling very cold given the blood outside your body isn't kept as warm as the cozy 98.6 we all keep it. I woke up feeling like I was 90 and tired but a nice 5 hr nap this afternoon has gotten me back on my feet. And thank God no more shots so no more migraines or feeling like I was hit by a bat.

If all goes well with the PET I had today those cells will be coming back into me to rebuild my immune system sometime mid to late July. Its a relief to get those cells stored as it means my bone marrow is still strong and even if more chemo is necessary that hurts the bone marrow the cells will be there ready for when I go into remission.

Tomorrow have an EKG, some more blood tests and a CT(moon river!!) and Friday meet with my doc to see how everything looks. Thankfully I think then they are going to let me go home for a week. A week that will amazingly include the 4th of July--my favorite holiday given I get to blow things up. After living 12 years in New York where sparklers are outlawed I am excited to have the no holds barred fireworks' laws of Texas come into play where everything short of dynamite is allowed. It will be Aidan's first real 4th of July as well so excited to see if the pyro thing is hereditary. So if any of you see a news story about an unidentified texas man launched to the moon on the 4th, you know who they are talking about.

All the best, Stem Cell Charlie.

Big week ahead

Have been taking neulasta(something that stimulates your bones to produce massive amounts of white blood cells) shots 2x daily since I got out of the hospital about 10 days ago and one of the fun side effects is massive bone pain and a headache that mimics a migraine. So have been spending my days in dark rooms trying to sleep as much as possible to help the time pass as quickly as possible.

Since I was released they have been checking my counts every other day and thankfully my white blood cell count has started to rise, platelets dropped to 30 yesterday or about 10-15% of a normal person so been a great contributor to me being able to sleep so much ha.

Post my blood work tomorrow they should have a pretty good idea of when they are going to collect my cells. If I had to guess it would be sometime Thursday for a start with collection taking anywhere from a day to 5-6. Also this week have all my pre-transplant tests, CT scan, EKG, chest x-ray and the all important PET scan. Get the results of the PET scan at 9am on Friday so exciting but also scary.

Scary because it will show if I am in remission or not and if not how close I am to remission. If I am in complete remission then onto transplant the following week with hopefully a quick stop at home to visit with Aidan. If not then onto some other chemo depending upon what the transplant doctors feel. If you are of the praying type please pray for complete remission. From all of the studies if you enter transplant in complete remission then 5 year living/cure rates are around 65%, if you go into it only in partial remission then the rate drops dramatically to 15% so very important for me to reach complete remission.

Will write more when I know more and these darned headaches go away.

WOW that was quick--onto Stem Cell we go.

Saw the oncologist today, pretty typical stuff before starting ICE round #3. He says in passing if it was up to him they would mobilize my stem cells after this round of chemo but in reality since he wasn't in charge, what was going to happen was a PET scan in 2-3 weeks then sucking out the stem cells a week+ later. So plenty of time to recover, relax, recoup.

Instead I get a call in the hotel room that they are going to suck the stem cells out of me as soon as I am done with this chemo. This basically involves shooting me up with shots which make my bone marrow produce massive amounts of white blood cells. Then they literally stick something the size of a garden hose in the side of your neck and filter your blood through a dialysis type machine sucking out the baby stem cells for 4 hours a day.

Min for re-infusion is 2 million cells which can take anywhere from a day to a week to extract but I am hoping for more cells in not a lot of time. They are then going to do my PET, let me rest for a few days and if all is clear off to stem cell transplant, nuclear chemo, a month in the hospital and a month in Houston where they monitor you each day.

WOW a little quicker time table than I was anticipating. I feel like clyde the orangutan from the classic Clint Eastwood film, Every Which Way but Loose(robbed of an Oscar that year, 4 stars though highly recommended please Netflix it) But I guess the sooner I get going the sooner I can work on getting better and back home.

I am praying for a clean PET scan and for my body to recover quickly so I can head into transplant strong. In great news Aidan is home from the hospital and is as funny as ever. Emilia finally relented and shaved his head so he could look like his poppa. I think he looks great.

No idea how I will be feeling going forward but will try and update folks as the process goes on.

One funny and one great listen.

http://www.mdanderson.org/newsroom/cancer-newsline/cancer-newsline-topics/2011/cancer-newsline-don-t-let-stress-get-under-your-skin.html

A is for attacking Cancer Cells

See if you send me silly things I will actually wear them.

Ice Ice #2 and a fat man in a little kimono

Well the 2nd round of ICE sucked about as much as the first round. No 2 ways about it chemo just isn't that fun or funny. I did manage to hold down my cookies until getting discharged from the hospital this time though.

Most of the nurses are super professional. As well as the folks who come around and take vitals and blood. 3 separate people,1 for each job. I had one guy named Daniel who was in charge of my vitals for 2 12 hour shifts. Spitting image of the guy that everyone picks on in Lean on Me but about 2x the size. One night he comes in all gowned up and given his size he has to turn my IV pole towards me to get to the blood pressure cuff. These IV poles are like Christmas trees if pointed the right way so he wakes me up. Nausea kicks in so I make like I am going to blow some chow and instead of finishing the vitals Daniel,  yelps, "I'm outta here" and does the shuffle out the door. I just hope there wasn't anyone on the other side of the door. That made me laugh at least. I wish there were more funny stories this time around.

Same schedule relatively as last time. Get discharged, wait a day then get this shot neulasta which pumps up the white blood cells. Amazing these suckers cost 10k a pop. Drive home, spend 2 days bargaining with the chemo gods if they took the nausea away they could have a limb. Then the pain of this neulasta shot kicks in for 3 days(feels for me like someone is trying to expand my bones from the inside using a pneumatic pump). Then after that all good, just tired and sleep a lot of the time.

Thank God my counts have responded both times after dipping low, about 9 days post chemo they are climbing back up. In fact my white blood cells now are normal and just 2 days ago they were 15% of normal. Platelets are still about 1/3 of normal hence the tiredness but so far so good.

Plan now is to head back in a week for ICE #3, wait 2-3 weeks and get a PET/CT scan. If I am in complete remission at that point they will go ahead and start sucking the stem cells out of me and getting me ready for transplant. If not then we will try another form of chemo. I know the current form is working as my lymph nodes have all decreased to where they can't be felt, just a matter of if there is any residual disease.

Thanks everyone for the great Hawaiian shirts, I think I am up to around 10 now so plenty enough to wear during transplant. In addition I have decided I will summon the powers of the Sumo for this next ICE and ordered out myself a SUMO robe. A lot of long faces at MD Anderson so hopefully folks seeing me wear this around will get a chuckle. Sure made me laugh looking at myself in it.

If you are the praying sort please have a prayer for the little man, he had a seizure this morning so is spending some time at the hospital hooked up to wires and such, and for my old man who had some health issues as well and is out of commission being able to help.

Please laugh loud and hard at the fat man in the sumo kimono. Maybe for my next entry I will strike some karate moves for the photos and you can call me Chest Rockwell.

Into the breach

And it begins ICE #2 and the killing of more cancer cells. Like Kilgore and his Napalm I am smelling some victory coming from these bags. Been experiencing tremendous light me on fire please cut my leg off left leg nerve pain(small tumor still pressing on a nerve). Nurse saunters in and says nonchalantly maybe its a blood clot, have you had that checked yet as we don't want that going to your lungs. Just the thing an anxious pre-chemo patient needs to hear. Thankfully post an ultrasound, by a nice young lady who walks in and tells me to take my pants off, I am sans clot and ready to roll with chemo. The one drug that can solve the nerve pain though can't be administered until the 12 yr old resident gets the ok from my main doctor tomorrow morning. AHHH.

Talk to everyone in a week when I climb out of the chemo hole they are going to put me in. I take no responsibility for anything posted on this blog between now and then as I have told them to dope me up as much as possible so as not to feel the side affects of chemo.

If only the windows here would open a crack all these anti-nausea drugs wouldn't be needed. Your bestest buddy, Cheech.

You talking to me?

ICE round 1 and treatment update

First let me say thanks to everyone for all of the e-mails, messages, comments, visits and especially prayers. It means a lot to a guy who spends most of his time lounging around on a couch or in bed to get these as they provide a great distraction from working on killing cancer cells. They help me feel alive so THANK YOU!!!


A little tardy but thought I would include it for other folks about to go through the same thing on their cancer journey.

After a week at MD Anderson with some fits and starts I was finally admitted to my room the Friday before last around 4pm. Room was great, 2 TVs a couch/bed for Emilia to sleep on, own bathroom, really couldn't have been nicer.

They began infusing the drugs into my newly placed port around midnight. One bag ran for 24 hours, one for 6 hours and one for around 3 hours the first night. 2nd night was just the 6 hour and 3 hour one and third night was just the 3 hour one starting around midnight. I would say all in this round of chemo is about 1.5-2x as hard as ABVD for me. ABVD was around 4 hours and then you could go home and climb into your own bed. Even though it was just 72 hours in hospital, being woken up every 3-4 hours for blood draws, vital signs being taken and the constant smell of chemo didn't make for a whole lotta fun. Or a whole lot of things being able to be kept in my stomach.

When I walked into the room I had tumors pressing on my lower back, my hips and my left femur that I could physically feel and hurt a whole heck of a lot. Given they don't want to mask a fever you aren't allowed to take advil/tylenol/aspirin so to help curb the pain they started with oxycodone, then morphine and finally gave me this cocktail of drugs ABH(ativan/benadryl/haldol) that knocked me out fully. By the 2nd day I no longer had any pain in my back or my hips so thanks be to God the chemo is working as the tumors in those areas have shrunk. Still some pain in my left femur but 2 more rounds to knock that out.

I was released Monday afternoon and thanks to my good old Dad being there as he wheeled my fat butt from the Hospital across the sky bridge to the hotel room. Only 2nd time in my life I was too weak to walk very far which sucked. But by late the following day I was on my feet and steady.

On the very funny side, one of the drugs causes neuro-toxicity so they run fluids through you like no tomorrow and monitor your output. HA. Some of the drugs must have stayed in my system as the first night back in the hotel I would wake up every hour as I thought it was my responsibility to mentally check on the other cancer patients temperatures in the hotel(you see anything above 101 leads to an ER trip). I was really out of my gourd and I don't think I have ever heard my wife laugh harder as I told her of this ability and responsibility. 2nd day my head was still a little cloudy but by the third day I was thinking as clear as I had prior.

Tuesday got a neulasta shot which forces your body to make white blood cells in massive quantities. In return for this it causes bone pain like no tomorrow for a couple of days. Hurt even to eat. (I tell you this chemo is great for the diet plan, walked into that room 205, walked into my 6 days later 196).

Had to stick around MD Anderson for 2 days given the clinical trials I am on to give blood and then home that Thursday. I would say by this past Sunday I was doing pretty well chemo wise. Still very tired, rest a lot but am walking(did 2.5 miles yesterday) and eating full meals.

As part of the clinical trials they monitor my blood basically every other day. Went yesterday and as chemo kicks in about a week after fully knocking the white blood cells down mine were at about 15% of what a normal persons are right now. Its called being neutropenic, so nothing raw for me, or public places or being around kids--save my own. So thankful for having a house and a backyard to sit in and rest. Also my platelets are down to 51 from a normal person's range of 150-400. This is a new one for me and has led to being really darn tired. Its a miracle if I can make it to 8pm. I am so thankful for my San Antonio oncologist though Dr. Kulter who looked at these and said, "exactly what I would expect, keep charging", now thats a dr. who knows what a guy needs to hear.

I am getting daily exercise though, doing my walks, eating well and enjoying the family that is all around. Overall beyond the fatigue I would say I am doing great and enjoying lots of moments everyday. Just thankful to have no pain and be able to to be.

Round 2 of ICE is scheduled for the 25th so a great 9 more days to get my strength up and enjoy the San Antonio weather.

Peace in Christ, C.

I love this video

Terrible Hawaiian wanted

Seriously. I had this great port/catheter put in my neck/chest that doesn't allow me to wear my trademark gear so I am going Horrible Hawaiian for the remainder of time I have this sucker in my chest. Its there so meds can be pumped into me quicker and more easily.  I need links/ideas of the worst looking/ugliest/make your fellow patient and nurse laugh Hawaiian shirts. Post the links in the comment section or send me an e-mail at charles.a.cavanaugh@gmail.com of where I can find them.

I already bought a fantastic black one with fat elvis singing on the front.

I will update those interested in how the week post ICE has been tomorrow(full of laughs I tell you). Peace in Christ, C.

You are all...

You are all worthless and weak for not getting the prior clues. Answer Howard Hughes. This round of chemo really is not that fun. Thats about all I have to say about that, one last infusion tonight then a day more of fluids and out of here Tuesday to a hotel for 2 days. Then home to San Antonio for 2 weeks of rest and recoup. I think more than anything it has been having to be hooked up to an IV pole the whole team with chemo streaming most of the time, smells, tastes have led to a few "BUY MY BUICK BLACH" moments.

Thankfully Aidan has finally gotten to go into the pool and went swimming with his grammy today. Will post pictures of that when I download them. Made his old man very happy to hear he finally got to go swimming. And thanks to my wonderful bride who has stuck by me and put up with my moaning and groaning and complaining, don't know what I would do with out her. And Go Lakers and Yankees!!!!

A fun contest, whomever can identify the link

between this video and this picture(not named Ben Wallisch) I will donate $500 to your favorite cancer charity. Chemo so far has been chemo, coming up on hour 18 of a 24 hour drip. Thankfully I got all drugs infused last night and no wacky reactions so just more of the same tonight and tomorrow night. Massive fatigue and nausea but they have gotten my pain under control via MORPHINE!!! what a nice trip that is. Discharged Tuesday morning if everything is on schedule and have to wait until Thursday for one blood test then home to sleep straight for 3 days. Hope everyone is well. Have to say MD Anderson is one great place with some great people, way better than any of the hospitals in New York we had the fun of visiting. Great to see.

Who knew Advil could cause so many problems

Part of the fun of cancer is pain. Pain where the tumors are or are pushing on. So I take advil and it works like a charm. Sadly advil doesn't mix so well with them inserting the neck catheter I need for chemo to be administered so chemo has been pushed back to Thursday until the advil is out of my system and now I am taking Vicodin for the pain. Might sound like fun but mixing that with the clinical trial drug has led to a nice case of the yacks. Not been a fun few days getting sick before the chemo sick. I think the only thing that has cheered me up has been thinking of the little man laughing. Aidan loves to laugh. I think the best laughter from him is when we are not even around and he is watching one of his favorite shows--america's funniest home videos. He laughs at almost every skit, its great.

So Chemo tomorrow now for 3 days and then a week to recover so I will give an update on the other side of the chemo fun.

Nothing funny here just a great ending scene to one of my favorite movies

And the Fun Begins

Today is day 3 of many of a clinical trial drug I am on to weaken the tumors before and during chemo. Its called panobinistat. Some folks who take it get irregular heart beats so they make you get EKGs a few times a week. Thankfully no crazy heart beat for me but on walking into a new clinic today they assigned the new guy to do my EKG. Instead of the standard stickers to attach the leads he somehow decided super glue was a better adherent. On trying to get this off after the tests it stuck to my fingers and from there to the mall to out to eat with my lovely bride I felt like Clark Griswald in Christmas Vacation, hands sticking to everything, menus, napkins, small children, toilet paper, it was great. It took paint thinner when I got home to finally get it off.

Monday check in to MD Anderson for 4 days of an inpatient chemo called ICE. For those of you who haven't had chemo it feels like someone took a baseball bat to every part of your body, its pretty fun. I can't wait. I found a viking helmet at the mall, I think I might wear that for chemo.