Bad week

So its 3am, Wednesday, Oct 27 and I'm sitting in Deaconess Hospital in the Oncology ward.  Yes, this is my 2nd night here.  I slept for almost 5 hours and have woken up restless in the most uncomfortable bed that was ever invented.  My tailbone is sore from sleeping upright due to the constant acid reflux, thanks Cisplatin.  I had the worst dinner I've ever eaten in my entire life and I just started my 3rd bag of fluids to help rehydrate myself after a horrific weekend.  I LOVE CHEMOTHERAPY!!!!!!

I really need to be careful what I say because, in reality, the technology that has given us these incredibly aweful drugs is also giving me a chance to live a completely normal, cancer free life.  So be it. 

Here's a breakdown of the weekend.  Constant nausea, vomiting and diarrhea.  No food.  Very little water.  The diarrhea was due to the drugs causing so much constipation that I was drinking prescription ex-lax every 2 hours.  I was taking 3 different anti-nausea meds but none was helping.  I felt ok and ate breakfast on Saturday but that was basically the last thing I ate until coming to the hospital.

So, now I'm on about 6 different presciptions including steroids for a few days until the effects of the Cisplatin hopefully wear off.  I was able to eat 3 meals, well if you can call them meals, yesterday and have held everything down.  I'm hoping the doctor will send me home with a better drug regimen in the morning. 

All I can say about the last 4-5 days is that it was absolute hell.  The combination of reflux, constipation, nausea and and exhaustion is something that is just indescribable.  Throw in vomiting and diarrhea and you have the perfect storm.  I've had food poisoning and really bad flu bugs but nothing compares and no one should have to deal with it.  Such is life I guess.  I think mentally and emotionally it was the most difficult.  I was all over the place.  I'm not sure what Noelle thought when I told her that I wasn't doing any more chemotherapy because I couldn't handle it.  Or how she felt when broke down more than once at completely random times.  I think she's only seen me cry maybe 4-5 times in the 12 years we've known each other but I just couldn't help it.  The mental aspect of this disease is something I think I'm going to be dealing with for a long, long time.  I'm as optimistic as they come, ask just about anyone I know, but when I look at Brynnley or my 6 month pregnant wife the thought inevitably creeps in...  What if I might not be there for them in the future... What if I might not see my girls have a family of their own one day...  If that doesn't make any grown man cry, he's not a man and doesn't deserve to have those blessings in his life.  Just my opinion :)  I'm not exactly sure how to deal with those thoughts right now but the only thing to do is move on and and push through.  I've been blessed with an incredible wife who is everything to me and I'll never be able to express that to her.  I have a beautiful little girl that isn't even 2 1/2 yet but is going to be brilliant and do great things in this world.  And I have a little one the way who is going to endure so much before she even gets here that is she has no choice but to be amazing.  And, to top it all off I've got an amazing support system that is behind me in everything and asks for nothing from me.  What else can ask for?

I've shared far too much personal information, I'm on too many drugs and its 4 am.  Maybe I'll be feeling well enough to post something a little more uplifting tomorrow.  Since I haven't been able to eat for 5 days, all I can think about is food, it's a problem.  I have a master plan to solve my food cravings and cure my Texas homesickness.  Maybe I'll post about that tomorrow.  Only 2 months left......  

Days 3 and 4...Hangin in there

It's the co-author, Noelle, again.  At 8:00 tonight Adam made his way to bed!  I think this might be the all-time earliest bedtime that Adam has ever attempted.  Brynnley actually stayed up 30 minutes later than her dad!!  All I can say is at least he is able to sleep and isn't puking.

The last two days have gone pretty well as far as the chemo administration goes.  They are gradually increasing the rate the drug etoposide is administered and his body seems to be handling it a lot better.  No more recurrence of internal burning!  Today they also gave him an additional drug, Adovan.  It is a relaxer, so that his body can relax a little more and is supposed to help with the nausea.  Adam has been on the verge of throwing up for the past 2 or 3 days....constantly.  Being a woman who is now in the middle of her second pregnancy, I have experienced small phases of nauseousness...but NEVER a consistent, all day issue.  I am happy to report that he hasn't vomited yet and we are happy about that, although I can't imagine constant nausea is much better. Adam still has a great attitude amongst all this.  He definatly isn't his normal self, but considering the circumstances he is a tropper...to say the least!  He still finds time and ways to play with Brynnley and he is a wonderful and loving husband. He is ready for tomorrow to be over so that he can have a few weeks away from more chemo, but is nervous for the weekend without IV administered nausea medication.  We feel so blessed that this time around we have multiple anti-nausea medications available to us.  Last time the only thing they gave him was Zofran, and it DIDN'T work for him at all.  It actually seemed to induce vomiting.  So we are are keeping our fingers crossed that between the 3-4 meds he will be able to keep any vomiting to a minimum...or even better that he wont vomit!

We would also like to thank our amazing friends: Sarah Blankenagel, Heather Brower, and Mandi Price for watching Brynn so that I could be with Adam during chemo treatments this week.  We couldnt do it without you and it has been a relief to know that she is taken care of and is having fun playing with you and your kids, kitties, etc.  Asking for help is something that Adam and I don't like doing, so this has been a very humbling experience.  We are so grateful for your willingness to help out!  Thank you also to everyone else for all the prayers and support on our behalf.  We know Heavenly Father is trying to make this as managable as possible because of it. 

Day 2: A much better day

I apologize for not blogging on my 1st official day of chemo and I've got to give thanks once again for a wonderful wife.  She is doing everything she can to make sure I'm comfortable and taking care of myself.  Thankfully she stepped up and filled in for me during a crappy day. 

Today was much better.  It still took nearly 6 hours but they didn't have to infuse Benedryl so felt 100% better.  It was a long boring day but now I can say I only have 18 more treatment days left!  After treatment I met up with my "work family" and did our Christmas pictures.  I've only worked with them for 4 months but they've made me feel very at home.  They wouldn't do pictures without me and didn't want me looking scary and sickly so they planned to squeeze it in today.  It was fun to see everyone and nice to be outside for sure.

I've been feeling more and more nauseous in the evenings but have been diligent about taking my medications. It's pretty funny, I have a special relationship with one particular trash can in our house.  It kind of grosses me out that we even still own the thing.  But it was my best worst friend during my 1st round of chemo and the night I ended up in the ER from undercooked chicken and the night of the worst 12 hour flu bug anyone should ever experience.  Needless to say, this trash can has seen its fair share of bleach.  Like I said, it needed to be thrown out years ago.  But there it sits on my night stand, standing gaurd just in case.  It's worrying me a little bit that I'm already feeling so nauseous because I was hoping to keep my buddy away until at least Saturday or Sunday.  Who knows, gotta drink lots of water, eat right and take my meds and hopefully I'll be fine. 

It's pretty hard to describe the feeling of such powerful toxins in your body.  You know you shouldn't be taking them, you don't want anything to do with them, but you're life could depend on them.  Definatly a love/hate relationship.  Only 18 more days, gotta keep truckin'!

Day 1: Not a great start

I was pretty pumped to get started.  I had my PSP, zune and a book or two ready for my 4-5 hours and then I'd go home.  I was even optimistic enough that I drove myself to my 1st session......hold on, change in author.  This is now Noelle, I will be finishing the blog entry tonight.  So Adam drove himself to his first chemo session, which was today.  The last time he went through chemo, nearly 6 years ago, he wasn't affected too much by the drugs until the second week or so.  He felt confident that he would be able to go to and from chemo today with no problems, go sit for 4 hours or so, come home and keep on truckin'....so NOT the case!!!  I asked him previously if I should take the day off work so I could help him, but he was persistent in telling me to go to work and he would be fine...so I went into work today.  I called him on my lunch hour at 12:30 to find out that he had some kind of reaction to the etoposide (one of the chemo drugs).  It wasn't a normal allergic reaction: no hives, itching, etc.  Adam described the sensation like this.  If you have ever had iodine constrast administered through IV, you would understand the sensation better.  It is a weird warming sensation that slowly radiates throughout your body as the iodine pumps through your veins.  Adam said it was that radiating warm feeling, only 10 TIMES WORSE?!?!?  It wasn't warm...it felt like his insides were burning.  That is totally freaky!  The feeling started no more than 10 seconds after the etoposide started through his IV.  The sensation started in his chest and went quickly to his head, causing his neck and face to be extremely flushed and red.  He immediatly told the nurse what was going on and they started him on Benadryl...a large dose of Benadryl.  After flushing his IV with saline, steriods, and the Benadryl, they would be attempt to administer the etoposide again....this time at a much slower rate.  After finding all this out on the phone with Adam, I was a little freaked out, but I'm sure he was more scared than I was....I can't imagine what that must have felt like to go through.  He has had etoposide before (6 years ago), so why did his body take it so poorly today?  We still dont know the answer for sure.  I hurried and got some lunch then went back to work to use the phone (since I accidentally left my cell at home!!), to check on Adam.  I called Adam on his cell phone( just 30 minutes after I got off the phone with him)...but no answer.  I called again 5 minutes later, and again no answer.  Then I started to get really worried.  I got in the phone book to track down the office number and got transfered to the chemo area.  I asked the nurse if everything was ok with him, he wasn't answering his cell.  She reported that he was sleeping.  After such a massive dose of Benadryl the poor guy couldn't keep his eyes open.  She then told me they had started the etoposide again at a slower rate and that he was doing just fine, and that he wouldn't be done for another 2 or 2.5 hours.  I was able to leave work early and headed up to his Dr.'s office.  When I got there Adam was awake, but pretty drowsy.  He finished up the IV of cysplatin and another of saline and he was done for the day.  The 4.5 hours of chemo quickly turned into full 8 hour day, POOR GUY!  The nurse attempted to explain possible causes of his adverse reaction, here are the possibilities: 1) He had an allergic reaction the meds.  2) The bag with the etoposide in it might have not gotten shaken enough when they started the IV, so there could have been a higher concentration of the drug at the bottom.  3)  They put the drugs in too quickly, basically shocking his body with an overdose of the med.  They are suspecting #3 is what happened, but can't be fore sure until they try it again tomorrow.  They will start him without any Benadryl and will slow the IV rate down....and keep our fingers crossed!  We will update you on how that goes tomorrow.

As for this evening...again, not great.  Brynnley woke up singing, talking, and wanting to play.  Normally that is fine and no big deal, but Adam wasnt feeling very well.  I was trying to get Brynnley fed, get Adam some fluids and food, and trying to do the dishes...but it didn't go very well.  Brynnley just wanted to talk and sing at the top of her lungs and would not use her "inside" voice.  Adam was being very patient, but I could tell he felt horrible, was exhausted, and am sure the noise was bothering him.  After trying to distract Brynn for awhile, she and I went to the store with our friend, Sharee.  Then we had to drive back downtown to get the car Adam drove this morning.  Since he was so druged up on Benadryl this afternoon, he couldn't drive the car back home.  Once we got home again, I got Brynn ready and off to bed!!  As you have read, Adam didn't get very far in his blog entry.  He is so tired, nauseous, and was ready for bed at 9:15.  If you know Adam, you know he is a night owl!  So when he came to me at 9:15 to see if I could finish his blog, I knew he felt like "a big, greasy turd" (one of Adam's favorite sayings...hahahaha!). 

I apologize I am not the creative author Adam is, but I guess it is better than nothing.  I hope he does better tomorrow!  It is so hard to watch someone you love so much, who is normally so active, fun, and lively, sit on the couch for 5 hours straight and feel so awful.  I wish I could take some of the discomfort away from him.  He has been through so much in 4 short weeks and totally doesn't deserve this.  One thing is for sure, I admire his strength and positive attitude through all this. I know he is a fighter and will get through this.  This might be a long road, but we are hoping for the best.  Hopefully he will be able to put his own words on this blog soon!

Chemo

I haven't been doing very well on updating my blog have I?  No, sorry about that.  My only excuse is that I've been feeling good enough to do some little projects around the house so I've been busy.  It's not a great excuse but here I am now.  I was also waiting to talk to my Oncologist about our next steps before I did another update.  That was yesterday, so here's the update. 

We met with Dr. Njuguna yesterday and went over everything from the beginning.  The pathologies of the tumors, the CT and PET scans, lab work, etc, etc, etc. 

The tumors in my lung were both 100% Embryonal Carcinoma (EC), which is the testicular cancer that had metastasized to my lung.  We had kind of assumed and hoped for this.  Since my abdomen and lymph nodes were all clear, I had worried "what if this is another type of cancer?  Why did it go straight to my lung?"  The answer is that the tumor cells got into my blood stream and the 1st place your blood slows down long enough for them to attach to something is in your lung.  EC tumors respond very, very well to chemotherapy so in a way that was a relief.  Given that I had testicular cancer metastasized to my lung diagnoses me with Stage III testicular cancer.  Assigning a stage really means nothing new to us but is a little bit scary because it is the highest classification given.

The lab work from my lung surgery showed that my tumor markers had dropped significantly.  One of the markers, called AFP, is normally 6 but will typically have a number > 1000 in people with metastatic disease.  My AFP before the 1st surgery was 146 and my AFP the day before my lung surgery was only 18.  I had more blood work done yesterday and hopefully it will be close to normal.  We find out on Monday.  Normal tumor marker levels in your blood give you a better prognosis.  Even though I'm a Stage III, I have very good risk markers.  It's really a bunch of medical jargon that allows doctors to understand progression of the disease and discuss treatments having more information.  I think its interesting but in the end it comes down to my body and the chemo fighting it off.  Stage I with excellent risk markers or Stage III with poor risk markers, you have to fight. 

On to treatment.  The standard for testicular cancer chemotherapy is a combination of drugs called BEP.  Bleomycin, Etoposide and Cisplatin.  You do 3 cycles of these drugs so we call it 3xBEP.  Cisplatin is the most effective drug against EC and is really nasty stuff.  The Bleo is given in the smallest amount but is the most dangerous drug.  It has traumatic effects on your lungs and actually causes death in 1% of patients.  Very scary stuff.  Approx 25% of patients will experience decreased lung function. 

The treatment I will be on is 4xEP.  Four cycles of Etoposide and Cisplatin but no Bleomycin.  I was very happy to hear that Dr. Njuguna had been in contact with Dr. Einhorn at IUPUI.  He is one of the international experts on testicular cancer.  They discussed my case and in his opinion, the recurrence of my cancer is a separate cancer not related to the cancer in 2004.  He recommended a treatment plan that doesn't include Bleomycin and that's what we are going with.  Studies have shown that 4xEP is equivalent to 3xBEP but you lose the lung toxicity. I'm all for that because I have a master plan to take down Hoopfest next year!  2011 is going to be a great year, I'm really looking forward to that.

By the way, one cycle consists of a 3 week period.  Week 1 I get the drugs 4-5 hours a day, everyday.  Week 2 and week 3 are rest weeks.  Essentially I get 4 full weeks of chemotherapy spread over a 3 month period.

I start chemotherapy on Monday.  Yes, Monday the 18th.  Dr. Njuguna was happy with the healing of my incisions and I've got a lot of energy right now so Monday it is.  But starting now will mean that the holiday season might be a little tumultuous.  My 3rd cycle starts the week after Thanksgiving and my last day of chemotherapy will be Christmas Eve day.  Not ideal, but we are excited to get it over with.

That's the plan.  We are jumping headfirst and hoping that 4 different anti-nausea medications will help me though.  It's nasty, nasty stuff.  The 1st cycle wasn't terrible the last time but I did lose my hair about 2 weeks in.  The 2nd cycle was the worst so I'm trying to prepare myself for that plus 2 more full cycles.  Essentially from Thanksgiving to Christmas is going to be really rough but I know we'll make though just fine.  During chemo I'm going to try and be diligent in updating the blog every day.  I'll try to get Noelle to give her feedback as well so you get the perspective of the both of us.  I feel so bad that Noelle is having to deal with all this stress while being 5 months pregnant.  I really hope that baby isn't suffering at all for it.  Noelle is doing a great job taking care of herself and she is such a cute little pregnant girl :-)  This baby is such a blessing, as is Brynnley.  I can't be more thankful for the blessings I'm able to enjoy. 

One of the things that chemo effects is your GI system.  You can't anything good, no greasy burgers, no spicy mexican food and no Wing Stop!  It's a shame, but we are heading there for lunch today so I can get my fix before we start on Monday.  Thankfully its a nice day today and it will be a good time to make a trip to Coeur d'Alene.  I'm excited!

Noisy geese and chest tubes...

I have to apologize for not posting anything the last few days.  Here's a quick synopsis of what I've been up to the last few days.  I've been sitting on the couch trying to breath normally again.  That's about it.  On Saturday morning we went and picked pumpkins in Green Bluff, it was actually pretty fun.  Brynnley loved the geese and we got some great pumpkins, 133 lbs worth to be exact :-)

"They're so noisy daddy!"

Pumpkin rides with the Grandmas

On the gorey details, as promised...

I was really worried about surgery but felt confident that the doctor would get the job done.  He did, and we were grateful to know that things played out the best that they could have.  It made for one long day for Noelle and especially my mom.  We were called by the hospital at 6:00am and told to be there early because my OR time could possibly move up.  We arrived at 7:30am, I was prepped and my mom and Noelle were brought back into wait with me.  At 1:20pm I was wheeled back for surgery.  Noelle had been strong for nearly 2 weeks but lost it as they came in to take me away.  I did my best to make sure she knew everything would be fine, but I also couldn't blame her.  It was strange for me because I had been extremely anxious at around 9:00am but after waiting for close to six hours, I was just ready to get it done.  Plus, the nurse anesthetist had already given me something to calm me down, that might have helped.  The only thing I remember from the OR was sliding myself onto the table, them strapping down my left arm and maybe 3 breaths through the oxygen mask.  Those drugs are amazing! 

The next thing I knew, I couldn't see straight and my back was aching and I was already in my room.  The surgery itself only took about 45 minutes!  Noelle was in shock that they were done so quick.  The doctor had to make 4 "poke holes" in between my ribs, through the muscle and through my chest wall.  He was able to quickly locate both lesions and remove them.  The best part was that the lesion in my chest was actually completely contained within my lung!  This was the best thing we could have hoped for.  He didn't have to try and resect the azygous vein or worry about my trachea, esophagus or heart!  We couldn't have been more grateful.  It also meant no major incision, no ribs spreading devices from hades and a much quicker recovery time.  It was great news to say the least.

What wasn't great was the chest tube they had to leave in.  It was a 1/2" diameter, 8 inch long plastic tube inserted into one of the poke holes in my chest.  It was connect to a suction device and had to remain there until my chest cavity was clear or fluid and air.  It was probably the most excruciating 24 hours I've ever had to deal with.  I was on a Dilaudid pain pump (which is roughly 5 times stronger than morphine).  It allows you to administer pain medication to yourself as you need it.  You can only push the button once every 8 minutes.  Let me tell you, during the time when I wasn't sleeping (which was a lot of the time), I was counting down the seconds until I could push that little button again.  It was unbelievable.  I didn't watch TV, read a book, play PSP, nothing.... All I could do was focus on getting enough air to stay comfortable and wait for that 8 minute clock to countdown.  About 3 times I experienced lung spasms.  I don't know if that was what they were, but that's what it felt like.  My entire right side felt like it was spasming uncontrollably and forcing the air out of my lung.  It was everything I could do to not pass out.  I just had to grip the side of the bed, focus on getting air into my lungs and wait it out.  If I wasn't also focusing on holding my tongue, I know I could have made a number of nurses cry, I'm sure of it but I was a good boy :-)  Never experienced anything like it. 

I felt terrible because my mom stayed with me all night with the chest tube and pain pump and all that nastiness.  I know I yelled at her at least once to get out of the room when my chest was spasming like crazy.  I don't think she probably got a wink of sleep.  All I can remember is fumbling around for the pain pump and begging for some sips of water.  What we will do for our kids, eh?  Love ya mom! 

Thankfully my chest x-rays were clear by 2pm on Wednesday and they were able to remove it.  After removing the catheter that allowed me to pee into bag for a day (which is a lovely experience by the way), I was done with the pain pump by that evening and walking out the door by 9am the next morning.  No joke, once that blasted chest tube was out, I was good to go. 

I'm sure glad to be in the comfort of home but being a big, muscular guy has its drawbacks with this type of surgery.  4 poke holes through your chest wall is not a comfortable thing.  I've only been able to sleep sitting up and only for 2-4 hours at a time.  I can't wait for the day I can sleep on my side or my stomach.  I'm too stubborn to take the pain pills they perscibed because I hate the side effects.  It's getting better each day but in general I'm exhausted.  I'm slightly limited in movement but I can finally put Brynnley to bed again.  She had a rough few days with daddy in the hospital.  She loves for me to put her to bed at night and I haven't been able to do that much since my 1st surgery three weeks ago.  I've got to say I miss it too.  She's such a sweetheart, can they please stay like this forever?  I scolded her today for throwing a temper tantrum for no reason whatsoever.  She is still a 2 yr old but I know she understands so I try my best to talk her through things like that.  Sometimes she gets time-out, sometimes she understands and moves on.  Then, tonight as I put her in bed, she says "I love you daddy, I'm sorry for yelling at you today."  If that doesn't melt your heart, you probably don't have one.  I'm just puddy in her hands..... Will she still let daddy tuck her in to bed in 10 years when she's almost 13?  I didn't think so.... 

Home already

I understand that it might have been a stressful few days for some of you while I was in the hospital and haven't been able to blog about surgery.  Surgery was Tuesday and was a success.  The 1st 24 hours were extremely uncomfortable but I had some dramatic improvements since then.  I just wanted to let you all know that.  I'll give a full account with some gorey details either later tonight or tomorrow.  Thanks once again for all your continued love and support.  I know that it was because of you and because of our faith that things would go well that Dr. Nisco was finished in 45 minutes!!  I feel so blessed to have him as a doctor and to have been taken care of so well.  More later....