MESNA (oops I mean mesna)

Christian cannot hear this word without it stimulating his GAG reflex!  One of the chemotherapy drugs that Christian has on days 2-5 of chemo is called Ifosfamide or I-fex.  This drug somehow neutralizes the toxicity of the I-fex and protects the bladder. It is given both before a dose of I-fex and 8 hours after.  The pre-dose is administered through the IV line at the cancer center it only takes 20 min. or so.  However, the post-dose is given to you in a little white lunch sack and when you open it, you see - the syringe from hell!!!  Below is a picture of the label.

I love that this oral medication has the words TOXIC and BIOHAZARD on it.  You would think that instead of waking up in the middle of the night to orally ingest it,  you would should handle it with a team of these guys!

Toxic is as Toxic tastes - Christian HATES this stuff - it is probably the worst part of chemotherapy; taking this stuff.  He has tried mixing it with orange juice, he's tried chasing it down with soda, he tried putting toothpaste in his mouth - which only made him hate brushing his teeth!  He's tried and tried and nothing seemed to make it easier.  However, someone at the cancer center mentioned "Atomic Fireballs"!!!!  His lovely sister Chantelle found some of these beauties along with another trick or two and it has become bearable.  The hope is that someone out there who has to go through TIP Salvage Chemotherapy will find this blog and learn how to take it night after night without gagging.!

Step 1.  Suck on Atomic Fireball for 10+ min.

Step 2.  Squirt Chloraseptic as far back in the throat as possible and on the tongue - this has a lovely numbing agent to it.

Step 3.  Squirt down the syringe of Mesna - and quickly, before you can taste it: swallow

Step 4.  Chase it down with some Izzie soda.

PHEW - done for tonight.  Now, go back to bed and try and get all of the above tastes out of your mouth so that you can sleep!  

The Pukes and the Poos of Post Chemo

Such a delightful title, eh?  Post chemo is always very, very, very, very, hard at our house and these few days were no exception.  Christian gets a miracle anti-nausea drug called "Emend" on day 1 of the beginning of every round but because of his intense nausea and vomiting which caused the hospitalization after Round 2, Dr. Bodkin ordered him to receive Emend both on the day of his Thanksgiving Day hospital visit as well as the next day at the Ambulatory Infusion Center.  All told, he received 3 infusions of this drug and we, eh hem, thought we would sail through most of the nasty side effects.
On Saturday, he began a pro-prophylactic course of anti-biotics called Levoquin.  He was prescribed this after his hospitalization for the Neutropenic Fever after Round 1.  The Dr. thought that it best to head off any possible infection with a course of antibiotic though there was no infection.  So, we filled the prescription and set off to endure the tough week ahead.  Vomiting began on Sunday, and Monday began some gnarly diarrhea.  Tuesday, his mom came over to visit and begged us to go to the hospital. But. Christian felt much more in control of his nausea and was trying so hard to eat 1/2 cup applesauce, or some spoon fulls of jello here and there.  Even though he was on the bathroom floor after having diarrhea to weak to make it back to the bed - we still thought we were fighting normal post chemo pukes and poos.  We naively thought that we were within normal reactions to the treatment.  We told his mom that Wednesday was doomsday - it was day 5 out of chemo and either we turned a corner and got this thing controlled at home, or we went into the hospital.
Wednesday was not any better - so after a call to the cancer center, Christian went in for a bag of IV fluids to help to hydrate him and another intervenous anti-nausea drug. We arrived at the cancer center a bit late 3:30 pm and they are only open until 5:00 pm so they couldn't give him a ton of liquids but assured him that he could come back on Thursday and Friday and Saturday AND Sunday - until he felt re-hydrated and less nauseated.
I've got to say something about this diarrhea - it was light in color and mucousy and it STUNK - you don't even know.  The smell floated out of our room and into the living room - it was nasty smelling - I mean diarrhea often is but this was INCREDIBLE - like the smell of meat that's been in the fridge way too long and you open the Ziploc bag to see if juuuuuust maybe you can get away with it.  But the moment you open the bag, your gag reflex kicks in and you slam shut the bag and toss is immediately in the trash!!! That was the smell!
Wednesday evening, we came back to the house and put Christian into bed, he threw up 4 more times and by 10:00 pm his dad had convinced us to go to the hospital.  His dad agreed to sleep there with the kids at the house - what's more fun than waking up to Grandpa in the house????- so that we could get Christian admitted.
To be continued in the next post . . .
Take away -1.  Listen to your in-laws  2.  Take diarrhea seriously.  Seriously folks, take it seriously!

Can't wait to Ring the Bell

Today's last and final day of Round 3 was spent in the AIC - the Ambulatory Infusion Center.  The Cancer Center was closed for the day, and the AIC does day patients much better than the hospital.
It is interesting - even though I have been a part of the "cancer community" because of my husband, I still cannot help but look at the bald heads and wonder.
The room is a big square room with vinyl recliners lining the walls.  There aren't large spaces next to the recliners for visitors and it is almost impossible - if side by side patients both have visitors - to keep from chatting to one another and eventually, eavesdropping.  In the corner, two nuns hovered beside an older, smaller nun and next to them, interestingly enough was a minister from another church and his wife.  The two groups shared a prayer and a scripture moment, then returned to their safe spaces.  Isn't it interesting how life tends to push different people together, we gain strength in the experience and then move back to our sphere of comfort until life pushes us again.

Our daughter's picture of her dad - a likeness???

The last day of a Round means the build-up of a week's worth of toxicity in the system and so Christian spends much and most of the time sleeping - but mostly resting.  We do crossword puzzles but talk very little - somehow I get too chit chatty and go faster than he is able after so much treatment, so I try to slow myself down and become the go-to girl and get things, or adjust them, or hand them over.
At the doorway of the AIC is a plaque with a  bell hanging off of it.  The bell looks very nautical and it has a rope pull that you can yank to ring the bell.  The plaque has the loveliest poem - which of course I cannot remember and I didn't write down.  The gist was this - when you have finished your last cancer treatment - ring the bell three times and go with strength and hope.  One of the nurses said that she cries every time she hears the bell ring.  So maybe, in the spirit of Christmas - and following the logic of "It's a Wonderful Life" maybe every time a bell rings, an angel does get his wings.  May the angels who have trod the hard, exhausting road of cancer with patience and long suffering receive the wings of freedom, of health, and of peace.  Go in strength and in hope.

Happy Turkey Day

Happy Turkey Day!

Happy Thanksgiving everyone!  This is Christian's wife Jana trying to keep this thing updated - something to remember with cancer blogs - if there is a big gap of silence things are either really, really good, or pretty bad.  I hope that I can bring you all up to speed on what's been happening.  

We decided to go ahead with chemo the week of Thanksgiving so as to stick to the original chemo 

schedule and hopefully finish the last and final round the week before Christmas.  Therapy at the hospital took 12 hours - whereas at the Cancer Center it takes only 6 - however, Christian's brother made a lovely visit over with some of their delicious leftovers and in between naps, Christian and I snuggled in bed and watched Sandra Bullock in "The Blind Side".  Christian's parents had our kids and it turns out their Thanksgiving plans hiccuped when dinner's lovely hostess came down with the stomach flu.  The Traditional Thanksgiving wasn't all that traditional but it wasn't bad or wrong by any stretch - just different.  

How could we spend the day - THANKSGIVNG day not feeling grateful for the doctors, nurses, family, friends, neighbors who have made this road just a little less rough - who have tried in every way to make themselves available by doing and being and loving.  Thank you so very much.  Enjoy your turkey induced coma!

WSCD? Let Cycle 3 Begin!

What should Christian Do?

On Sunday evening of last week, I got a call from my oncologist giving me the option of either delaying treatment during the week of Thanksgiving or proceeding according to schedule. Because the "day spa" is closed on Thursday and Friday, I would need to receive treatment in the hospital on those days, which would require some hoops to jump through.   Officially, I would need to be admitted to the hospital, but I would be able to go home at night.

We debated it, but the choice seemed fairly clear.  While I love the Thanksgiving holiday (it could be my favorite) and didn't relish spending it in the hospital as well as being sick the following weekend, I wanted to proceed according to the schedule for various reasons.  First, I didn't want to delay treatment and risk lowering the efficacy of the treatment.  Second, if I delayed treatment a week, I would have chemo during Christmas week, just like last year.  I'd rather sacrifice Thanksgiving so I can be home with family during Christmas week, although chances are I'll be sick.  Finally, I feel emotionally and physically up to it ad frankly, just want to get this over with.  I'd be hard pressed to think of a better Christmas present than knowing I was done with treatment and should be feeling better with each day.

So, I began cycle three yesterday.  We met with the oncologist before hand, all my blood work looks good and we were off to the races.  I took my little fanny pack home with my 24-hour drug and am back in the "day spa" getting some good hydration.

The last ten days have been adventurous.  The week following chemo I had a fever, abdominal cramps, back pain and the strangest combination of diarrhea and constipation. I'll spare you the details on that last one except to say it lasted for a good two weeks straight.  It appears to have finally disappeared yesterday.  The last week, I have generally felt pretty well, but it seems I always have a "big but".  I feel good but... 1) see aforementioned bowel movement challenges; 2) I developed a cyst along the incision scar from a year ago.  It was pretty annoying actually.  It hurt to bend over, had to keep my belt higher, could only sleep on a certain side or on my back and that required keeping my hands carefully positioned to keep the elastic band from hitting it.  Thankfully, it popped/opened/release the alien inside on Sunday morning and feels so much better.  3) Current challenge is with the bladder.  One of the chemo drugs is notorious for damaging the bladder.  Mine has been painful since Friday, but yesterday afternoon around 4:45, I was speaking to a client when jabs of pain began.  Enough to take your breath away.  I got up to make some copies (thankfully everyone in the office had gone home) and it struck again so strong I fell to my knees.  It kept coming on and off.  I managed to make it home and everyone knew something was wrong.  Thankfully we have those wonderful opiates at home.  I spent the rest of the evening in the recliner giving thanks to whatever pharmaceutical company had synthesized the drug and for the doctor in the hospital who had prescribed it.  I honestly don't know what I would have done without.  Ironically, with the diarrhea gone and the pain meds making me sleepy, I got the best sleep in week's last night!

So that's the latest and greatest.  Thanks again to all your love and support.  Words cannot describe how grateful we are.

AFP levels drop

In reviewing my blog, I see I forgot to give the most recent AFP levels.  We found out last week that my AFP levels have dropped from 32 to 7.  This is exactly the trajectory we want to see.  Normal levels in non-pregnant adults should be 6 or less.  Almost there!

Recovery Week - Harder than Chemo Week?

Looking back on things (at least from the perspective of how I feel right now, today), the first few days of chemo week are pretty smooth.  For the most part, you are still feeling pretty well.  About day 2 or 3 the leg pains begin, but I have learned to manage that pain fairly well.  Days 4 and 5 are harder as the nausea begins to hit you big.  I am hoping that we have learned to keep the nausea under control by balancing three different nausea medicines.  The hardest time seems to be Thursday of chemo week to Thursday of recovery week. 

After Round 1, I was hospitalized for neutropenic fever. After Round 2, I was hospitalized for to get the vomiting and pain under control.  The adventure continues.  Tuesday evening, I noticed I wasn't feeling as good as I expected.  At midnight, I was struck with a low-grade fever and these incredible stomach cramps.  I was on narcotics and the cramp felt that stomach hunger pangs.  I can only imagine how they would have felt without the narcotics.  With the stomach cramps came back pain and this crazy bowel movement which seemed to be a cross between diarrhea and constipation.  Thankfully, the stomach cramps went away by about 6 am.

The cramps came back at around 6 pm last night and stuck around until 4:00am.  When they went away, it was like when you take a turn after having the flu and you realize what it's like to feel normal again. 

I did go online last night to look up abdominal pain and neutropenia to see if there was anything I could do.  The results weren't pleasant.  There was no, "make some herbal tea of lemon and peppermint and take a hot bath", instead the results were clinical articles that addressed a variety of very serious conditions, some with fairly high mortality rates.  It was a sobering moment.  I had expected this chemo regime to be much like the first I had a year ago.  I assumed this, because no one told me otherwise.  I obviously knew and know the serious of the underlying disease.  But both my recent experience and what I read last night have lead me to realize that the chemotherapy medicines I am taking are incredibly toxic and dangerous for your body.  I can see some of you thinking, well duh!, we could have told you that.  But we're talking destruction of bone marrow, ulcers throughout your dietary tract, high risk of infection due to the destruction of the immune system.  And I don't mean infection that you might catch a cold or flu, I mean infections so hard to treat that in 20% to 40% of the cases they will kill you.

That got me to thinking about would you want to be told everything before begin chemo.  Usually I fall into the camp of complete disclosure, but in this circumstance, I think I appreciate not knowing.  First, the doctors don't know how any patient is going to respond and what side effects they will have.  The argument would go, why worry someone about a possible risk and add unnecessary anxiety.  Second, and this is key for me, I find I need to stay focused on the moment at hand.  It takes enough effort to focus on basic life functions such as, drink more water, eat more food, don't throw up, make it to the toilet, try and sleep, etc.

Those are my thoughts for the day.  Hopefully they are neither too disjointed nor depressing.  It's Thursday, despite the slight fever, weakness and fatigue (I will rest/sleep on and off all day for hours at a time) and fear of those crazy stomach cramps, I am doing really well.  Looking forward to a semi-normal week next week!  As always, thanks for the care packages, meals, etc.  We really appreciate the support. 

End of Cycle 2

Friday I went into the chemo center and vomited before I was even hooked up.  I think I threw up another two times during treatment.  I was happy to finish treatment and went home to sleep and vomit.  Saturday was more of the same, although I managed to not throw-up from 10:00 am until 3:00pm.  I couldn't keep anything down, including the anti-nausea and pain medicines.

We called the on-call oncologist and he was fairly insistent that we head into the hospital.  I wanted to wait and see if I could try and manage it at home.  But as evening come on the nausea grew worse so at 9:00pm we headed to the hospital.

I threw up again while they were bringing me back and that at least helped us get a room in ER.  We were in the ER for 6 hours as they ran various tests and looked for a hospital bed.  My blood tests came back phenomenally well.  White blood cell count and platelets were still normal.  Flu test came back negative, but the urine test showed possible infection.  Why do I share all this? Because the nausea was far more severe than we expected and we were trying to figure out why.  In the ER they bumped me up to morphine for the pain and then up another level to Dilaudid.  That made a difference.  The IV pain med and anti-nausea was enough to stop the finally stop the 32 hours of vomiting.

 

Yours truly. 

The wraps around my leg get pumped on and off with compressed air to avoid blood clots.

For the next 30 hours in the hospital I was finally able to rest and let my body start to heal.  We worked on getting the dosages and timing of anti-nausea right.  Because the doctor wanted to keep an eye on my heart activity during my stay, they put me in the stroke ward.  I was just happy to have my own room!  I got out yesterday around noon and went to the "day spa" (aka Cancer Treatment Center" for my white blood cell booster shot.  Several nurses at the "spa" had heard about my weekend and came to see how I was doing.  Apparently, I had looked like death warmed over when I was there on Friday and they had been concerned.

I got back to house, checked the mail, had lunch and went to nap in our bedroom when I discovered that my parents had been playing Santa early over the weekend and had got me a recliner!  Thank you both for it and for watching the kids and dog over the weekend.  Thanks to my brother for delivering it.

It was great to nap in it and I think I will try it out again now.  Conclusion: Home for now, back to a bit of work tomorrow (assuming all goes well) and trying to keep the nausea and pain under control for the next 3 days until the side effects begin to wear off.

Thanks everyone for your love and help!

Eeny, Meeny, Miny, Mo...

I thought I'd share with you some of the prescription drugs I have.  I say some because there are more on the way and we haven't picked up all the ones that have been prescribed.

The blue boxes are new 7-day anti-nausea patches for chemo week and post chemo week.  The tall bottle contains the pain pills for the Toxol leg pains.  The next three bottle are all anti-nausea.  The next one is an anti-acid reflux.  The next is a steroid to protect some organ (I can't remember which) from getting ulcers from the chemo medicine.  The last one is an anti-diarrhea, which I probably won't take. What's interesting is only the patches and steroids are supposed to be taken on a regular basis.  The rest are on a "take-em-as-you-need-them" basis.  It's a bit of a challenge trying to balance between the three anti-nausea and acid reflux pills.  That might sound odd, but if you think about it, acid reflux can seem an awful lot like the beginning of the need to vomit.  I've never been in a position to try and pick and choose between various medicines to see what works best.  It can be a bit frustrating at times, but like anything else, is a learning process. 

While the hiccups hit last night and the acid reflux returned, the leg pains didn't come last night.  I'll take it, thank you very much!  Those leg pains are a beast.  I think my voice is almost back, possibly to lose it again next week.  All in all, I am doing great.  So glad to have Round 2 almost half-way done!

Round Two Begins

Thankfully, my platelet count shot up from 50,000 to 450,000 and white blood cell count went from 2.5 to 5.5, so we were able to proceed with Round Two yesterday.  I got my pump and 558 ml of Toxol and by 2:30 was on my way to work.  The nurses and physician's assistant are always very concerned about how I deal with the Toxol.  The nurse told me yesterday that allergies to it are somewhat common and normally they have the patients with them the whole time at the treatment center as they are receiving the drug so that they can monitor the patient.  Because I take it home with me, they don't have that luxury.  The nurse also informed me that a big reason they are concerned is the dosage.  He said I am receiving about 4 times what a breast cancer patient receives.  Strong stuff.  Hopefully it does the trick.

Day two has gone fairly smoothly.  I got here at 9:30 and looks like I will get out around 5:30.  Tuesday through Friday are long days.  I get some work done, play crosswords with Jana, nap, read.  As the week progresses more napping and resting occurs.  I get so tired, and I know this sounds wimpy, but even responding to emails starts to get tiresome.

The side effects might begin tonight.  I feel that it is better to know that they are on their way and what they might be like as I feel somewhat prepared to tackle them again. 

So that's the latest and greatest.  Hopefully we will find out my AFP levels tomorrow and hopefully they will have gone down again.  I keep telling myself that at the end of this week, I'll be halfway through chemo, and that ain't bad!

I know I might sound like a broken record, but a huge thanks again to everyone who has sent packages, cards, emails, meals, helped around the house, called, texted, etc.  I cannot imagine going through this alone and the support we have received has been wonderful.  Thank you all!

The Best Laid Plans of Mice and Men...

I headed down to the "day spa" to start week two of chemo and was told that I had to meet with the physician's assistant before I could start treatment.  I thought we were going to discuss the plethora of prescriptions I had received, but was floored when she told me that I wouldn't be having chemo today nor any other day this week.  The average adult has platelet levels in the 200,000 to 400,000 range.  As of Wednesday, my platelet levels were around 50,000.  They refuse to give chemotherapy to anyone whose platelet levels are under 100,000.  She felt that if they gave me the 24 hour infusion my platelet levels would drop dramatically leading to internal bleeding.  Not good.

I have mixed feelings about delaying treatment a week.  On one hand it'll be nice to have another week to get stronger and enjoy feeling almost normal again.  Plus I can go trick-or-treating with the kids.  On the other hand, it extends the treatment schedule out, likely by several weeks.  Also, I understand that delaying treatment can lessen the efficacy of the treatment.  There's nothing to be done though. 

Good news is my tumor markers have dropped from 36 to 12!  I wasn't expecting any decrease in the marker level until after round 2.  We'll take early progress. 

A very heartfelt thank you to everyone who has brought meals, arranged for lawn care, sent cards, emailed, called, and sent care packages.  The outpouring of love and support has been overwhelming and means so much to us.

Fun mustaches and googely eyes delivered with a dinner made for a special treat!

Neutra-what?

Last Monday morning I thought that the corner had been turned and I was on the upswing.  I went in for the white blood cell booster shot, enjoyed a half sandwich with my parents for lunch and, despite the nausea challenges, was feeling pretty good.  About 9:00 that night I suddenly didn't feel well and felt a fever coming on. For the rest of the night my temperature hovered around 99 degrees.  I took some Ibruprofen to help with the fever, but I still felt unwell.  In the morning, I struggled to get out of bed, shower and get ready for work.  Miraculously I made it to work, but within 20 minutes of getting there I had to sit on the sofa we've moved into my office because I felt so weak.  I kept trying to get simple things done, but just didn't have the energy for it.  Jana called to see how I was doing and I asked her to come and get me. 

She brought me home and I slept for two hours or so.  I still felt the same.  I tried to eat a bit of food and then moved to the futon for more rest.  We called the cancer center to see what they had to say.  They suggested keeping an eye on the temperature.  I was disappointed.  I knew that at the very least I needed a prophylactic antibiotic.  Meanwhile my temperature started to rise to 101 and then 102.  We called the cancer center again to see if I could take a fever reducer and if they would prescribe an anti-biotic.  They agreed and said to take 2 Tylenol, but if an hour later the fever was still at 101 or higher, that I needed to go to the ER.  I was dreading that, but also recognized the wisdom in it.

Before the hour was up, I knew I needed to go to the hospital.  I just felt that something was fundamentally wrong and nothing I could do at home would help.  Having never been admitted to a hospital before, I was unsure as to what I should take/leave behind.  I left my keys behind, grabbed by cell phone, wallet, and a book; the bare necessities.  I called my mom and asked her to come to the house and take care of the kids when they got home from school, and we were off.

Telling the admittance desk that you are a cancer patient with a high fever works wonders to speed up the normal wait times.  She immediately had me put on a mask, asked if I had been out of the country in the past 21 days (Ebola screening), and told me to have a seat.  Within just a few minutes, I was giving various bodily fluids up for labs and escorted to a bed in an ER room.  The place was hopping.  Some guy had to be tasered because he wasn't complying with instructions.  An hour later a doctor came in and informed me they were admitted me for "neutropenic precautions".  I had no idea what that meant.  She informed me that my normal white blood cell count was around 6.9.  Mine was currently weighing in at a whopping 0.4, but most importantly they couldn't detect any white blood cells that fight disease (apparently not all white blood cells do).  The labs also couldn't detect any infection.  The theory is that the bacteria inherent in the gut aggravate certain linings causing the body to fight back with the only weapon it has left, a fever.  About two hours later they found me a room and off I went.

The first 36 hours was a parade of doctors, nurses, dietitians, etc.  I was very impressed with the doctors who took their time to answer our myriad of questions.  I spent all of time in bed, sleeping or resting while being hydrated and kept on various intervenous courses of antibiotics.  The nausea was still strong from the previous week of chemo and after trying three different anti-nausea medicine we found one that allowed me to keep my all-liquid diet down with some effort. I don't think I could have stomached gelatinized beef broth otherwise, but was grateful for its blandness. 

By Thursday, the moved me to a "soft diet", which allowed me anything I wanted, although fresh fruits and veggies were expressly prohibited due to risk of bacteria.  Everything had to be cooked well.  I was able to handle the food, and by the end of the day the nausea had lessened, but it still took me 30 minutes to eat the tiny portion of food provided.  My white cell count was still at 0.4. 

Friday saw some small improvements.  I didn't just lay in bed all day sleeping/resting.  I could manage to sit in a chair for an hour or so and give my back a break.  My nausea disappeared (more just a matter of time passing after chemo).  I even managed a shower.  We finally had some action from those little white blood cells, they went from 0.4 to 0.6 in the morning and were at 0.8 that evening.  Hey, we'll take any bit of good news we can!  Jana and I had a "move night" and sat in two chairs side by side and watched Monuments Men and Legally Blonde.

Saturday was a significant improvement.  I felt well enough for the first time to actually do something beside sit/lay around.  I picked up the room a bit, checked email and read.  The oncologist reported by white blood cell level had risen to 1.5! 

Hallelujah.

He felt I could be released that day, but needed to get the internal medicine and infectious disease doctors to sign off as well.

I managed to get disengaged from the IV for an hour and took a quick walk outside to see that, yes, the sun was still shining.  It was a glorious autumnal day.  Smelled some roses and back inside we went.  Back onto the antibacterial drip.  The other two doctors initially didn't want me to go home until Sunday.  I tried puppy-dog eyes, but I think they know that trick.  They did listen though and after more discussions, I was released in the evening.

All told I spent about 100 hours in the hospital and am glad I went in.  They never did find any infections (fine by me) but I felt human again by the time I left.  24 hours later, I still feel human, just really weak.   I feel like I could sympathize with an octogenarian about the difficulty of stairs, getting in and of bed, stuff like that.  But I sleep well, and wake up feeling refreshed.  No nausea, no pain, no IV.  I'll take it. 

Week One Down...Good Riddance!

Beginning week one of the new treatment, I thought it would be a lot like last time.  After the first week, no side effects to speak of.  After the second week, some side effects felt.  Third and fourth weeks brought fatigue, acid reflux/nausea, but didn't throw-up once and was able to maintain most of my activities.

This is going to be a different experience.  Monday, I went in for about 4 hours for hydration, steroids, anti-histamine, and then they got me hooked up to my 24-hour pump.  They kept me for 2 hours to make sure I didn't have any crazy reactions.  I found out the next day that they were worried about sending me home with the pump because of the high dosage of the drug and the risk of adverse side effects.  I went back to work with a sporty fanny pack and found my co-workers all bedecked in "orchid", the color of testicular cancer, and wearing wrist bands.  It was a sweet and much-appreciated gesture.

The rest of the night went fine.  It actually wasn't that hard sleeping with it and I didn't have any side effects.

Me with my fanny pack and pump.

 

Tuesday, I went back in and they started me on hydration, steroids and then Cisplatine,  Ifosfamide, then Mesna, before and immediately after the Ifosfamide.  They then sent me home with a vial of Mesna to take 8 hours after treatment.  The whole thing took about 8 hours and I shut down the joint with me and nurse Maria singing along to Steve Perry's Foolish Heart.  Because the treatments are taking so long they want me there from 9:00am to 4:45pm Tuesday through Friday.  All was well until about 9:00pm when my ankles started aching.  The ache slowly spread up to my hips.  Jana massaged them, which helped a lot.  By 3:00am, I had taken 1,000mgs of acetaminophen and 600mgs of Ibuprophen and was using a heat blanket without making much of a dent in the pain.  I think the Taxol causes the muscles to contract.  It felt like my bones were being squeezed and the marrow wrung out of them.  Next morning, they gave me Tylenol (didn't touch it), and a prescription for the biggest bottle of pain killers I have ever seen.  I normally avoid pain killers like the plague, but I took four within 24 hours and they took the edge off.

 

Nausea hit by the end of the week and I vomited at the end of treatment on Friday and again last night.  I was probably on my feet for now more than 5-6 hours.  Spent most of my time lying down, either asleep or close to it.  This morning I skipped the "mild" nausea pills and headed straight for the "severe" pills.  I feel like it's a priority to get food in me and keep it down.  Overall, I am feeling ok right now.  The meds make my head a little foggy, but the nausea pills help.  I find they don't make me less nauseous, but they make it harder for your body to actually vomit. 

 

Off to take my first full body shower in 10 days.  It's gonna feel great!  A huge, unqualified and sincere thanks to everyone who has reached out so far to make contact or help in some way.  We really appreciate it.



 

It's like Groundhog Day, All Over Again

After about two months of wait-and-see and discuss, it looks like a treatment plan has finally been decided upon.  Tomorrow, I go in for a new port to be implanted in my chest.  Monday will bring the start of a new chemo regime.  I will be doing 4 rounds of a chemotherapy called TIP.  The "T" drug is Paclitaxel, also known as Taxol or Onxal.  It is used for first round treatment of breast and lung cancer.  It comes from the Pacific Yew tree and happens to be the best-selling cancer drug ever manufactured.  "I" is for Ifosfamide and "P" is for Cisplatin, the miraculous platinum-based drug.  I feel as if I am reading from a warped children's alphabet book!

Each cycle will be much like last time.  I will receive chemo for five days straight and then get two weeks off to recuperate.  Paclitaxel is given over a 24-hour period on Mondays.  So, it sounds like I will go in on Monday morning, and get hooked up to a fanny pack with a pump and a packet of drugs.  The pump will operate for 24 hours straight.  I am sure to be the height of fashion, but at least I won't have to be in a hospital for a full 24 hours.  The doctors think the side effects will be similar to last time, but probably more fatiguing and painful.  The good news is I will be finished two weeks before Christmas, so I should be feeling OK for that.

That's the latest and greatest.  I'll provide an update early next week.

The (Cancer) Empire Strikes Back

I was hoping that this blog would be dead and buried.  In fact, mentally at least, I had moved on far enough to bury the user name and password in the deepest recesses of my mind.  Unfortunately though, it looks like I a resuscitation is in order.

I had my July blood work done and the alpha-fetoprotein (AFP) level had gone up from 4 to 6, or something like that.  As a reminder, an adult male should be in the 2 to 5 range.  When I was first tested a year ago, my AFP level was at 125 and eventually peaked around 2,600.  The oncologist thought that perhaps the blip was caused by a switch to a new lab.  He ordered the test redone and it came back at 4 or 5, back within the normal range and it seemed to be a false alarm.  As a precaution, he bumped up my first follow-up CT scan by a few weeks.

The day following the CT scan the doc called back saying that the scan found two "nodes", one in each lung measuring 9mm and 12mm respectively as he put it, "each about the size of a pea".  He said they weren't sure what they were, but that he would be referring me to UCSD's high dose chemotherapy/bone-marrow transplant unit (BMT).  Needless to say this put a serious damper on the first vacation in a year for which we were leaving on the next day.

Upon returning from the vacation (shout out to my Tanner peeps!) my sister and I met with the UCSD BMT doctor who felt that a discussing a bone-marrow transplant was a bit premature as 1) we didn't even know it was the cancer returning and 2) even if it was back, the growths were very small and my numbers were still basically fine.

So the next week back I went to my original oncologist and he informed us that the AFP levels had risen to 9.  They thought the best approach would be to continue surveillance with another CT scan and blood test in 6 weeks.  I was perfectly happy with this response as I had gone through the range of emotions in the grief cycle at least twice and was happy to forget about the whole thing for a while. 

In the meantime, I started various supplements and diet regimes that friends and relatives suggested hoping that they might make some difference.  We also had a great time with visiting family and a big birthday party bash.

Last week we met with the oncologist again to see where things stand.  The two masses have grown from 12mm to 18mm, 9mm to 23mm and they have a third buddy who has come along to play measuring in at 12mm.  The AFP level had risen to 12.1.  Based on these new figures, the oncologist is fairly certain that the cancer is back, the question is what to do next.  It appears that two options are on the table.  First, four rounds of a different set of chemo drugs called TIP.  Alternatively, I would have two rounds of TIP, followed by stem-cell harvesting, high-dose chemo and stem-cell transplants.  This would require me going on disability for 4-6 months as it requires two 3-4 week inpatient hospital stays.  Hmm, I think I will go for option 1, please.

End results, my oncologist is discussing my case with the bone marrow transplant doctor who is discussing it with his team to see what they think it best.  This Thursday, we will be making a pilgrimage up to Beverly Hills to meet with Dr. Daneshmand of USC.  He's an expert in the field and we are very, very intrigued to see what he has to say and what his recommendation will be. 

That's the latest and greatest.  Hopefully by the end of this week we will have a battle plan in place.  The good news/irony is that I feel perfectly fine both physically and emotionally.  It's hard having to put the next 4-6 months on hold, not being able to plan work trips, vacations, church duties, etc., but "c'est la vie!"  Your thoughts, prayers, follow-ups, and offers to help are so very appreciated.

Best kind of update, nothing to report

I had my first long-term update last month and all is well.  The blood tests were all clear.  It looks as if next month they will do either a follow-up x-ray and/or CT scan to take a look inside.  Hopefully same results then too.

Chemo Port is Out!

On Monday, I had my chemo port removed.  It was fairly straight-forward.  The nurse had me take off my shirts and lay down on the surgical bed.  She shaved my chest above the port.  The doctor came in and shot lidocaine into my chest.  It was similar to having the dentist numb your mouth.  He then cut me open and removed the port.  There wasn't any pain, just a slight sense of movement.  The weirdest part was when he sewed me back up.  He leaned hard on my chest and I could feel him stitch me up.  There was also a pert where it felt like two zip ties were being tied up.  I asked him if I could keep the port since I couldn't keep any souvenirs from the first surgery when they took something out of me.  I asked him if that was freaky of me and he said a lot of patients ask for their ports.  Who knew?  So, another step towards "normalcy"!

Quick Update

We met with the oncologist and I am officially in remission and will start the surveillance portion.  This means that for the first year or so I will have my blood taken and a chest x-ray done every two months to make sure that there is no sign of the cancer returning.  Then every 3-6 months, I will have a CT scan done as well. This will become less frequent each year until year 5 when they cut me loose.  I see it as an insurance policy to make sure that I won't be caught off guard again.

I am feeling really well and the hair is coming back in.  Not a huge afro like I was hoping for and it could be a bit thinker up on top, but no complaints here.  I will report back the test results in May, but I hoping to have nothing to report!

The Accidental Hero

In the summer of 1967, Rocco Morabito, a photographer for the Jacksonville Journal, had finished a photo shoot of striking train workers.  He had some film to use up and headed downtown to see if there was anything else of interest worth shooting.  Driving around, he saw a group of agitated people who were yelling and pointing at something above.  Morabito parked his car and saw that there were some linemen working on electrical lines.  One of them, a young man of 29, was hanging upside-down, apparently unconscious. Randall Champion had been performing routine repair work and had been shocked by over 4,000 volts, enough to stop his heart. Morabito returned to his car, radioed for an ambulance, and then ran back to take some shots.

Meanwhile, another lineman, J.D. Thompson, heard the commotion and raced to the pole where his colleague dangled from above.  Thompson immediately shimmied up the pole and began mouth-to-mouth resuscitation. He couldn't seem to manage to get any air into the other man's lungs.  So he moved Champion's body slightly, cradled his head in his arms, and finally got some air into Champion. At that moment, Morabito returned and snapped some frames.  Champion jerked, hiccuped, and then began to breathe again.

The ambulance Morabito called arrived, Champion was taken to the hospital and Thompson quietly returned to work.  Morabito radioed into the newspaper to proverbially hold the press, processed the film himself and took it to his editor.  The editor ran the picture on the front page with the caption, "The Kiss of Life."  It was picked up by papers around the country and then the world.  The term, "kiss of life" stuck to this CPR method and the following year Morabito won a Pulitzer Prize for his photo.

The Kiss of Life

Champion fully recovered from the shock and Thompson was hailed as a hero and presented with several awards.  Thompson seemed perplexed by the attention, however, and insisted that he was just doing his job, just following the training he received, no big deal.

I used to wonder about the sincerity of persons such as Thompson who displayed such dramatic acts of heroism and downplayed their role afterwards.  Did they really think that their acts were "no big deal." I understand now, that their sincerity is real.  Not to compare myself with people such as Thompson, I didn't try to save another's life, just my own.  Many people have called my act of fighting cancer "heroic."  I appreciate their kindness and sincerity, but I just don't see it.  Never once in the past four months did I feel anything remotely close to heroism.  I just did what I had to do and tried to make the best of a crappy situation.  

If anything, the heroism I saw came from those around me.  From far-away nieces who drew get-well cards, neighbors who brought food, co-workers who dimmed the office lights so I could rest better during my daily naps, family and friends who would visit with me in the chemo spa and chat to pass the time or call or email at random times to check in and show their support. Therein seems to lie the source of heroism.  It is a quality that resides within and shows itself instantly, without thought, in the moment of crisis.  The moments I got emotional were not when I received the diagnosis, nor after the surgery or even thinking about the implications of chemotherapy.  It was when someone would come up and offer me a hug of support with tears of sympathy in their eyes.  That to me was heroism and my kiss of life.

CT Scan and Results are In...

I had the CT scan this morning.  So much less stressful the second time around when you know what to expect.  The technician didn't even bother to have me change out of my pants (trousers for my British friends, I kept those pair of pants on, thank you very much).  Instead, she just laid a blanket over me and I pulled my pants down to my thighs.

I just got a voice mail from the oncologist and he already has the results of the CT scan.  Apparently the masses have either completely disappeared or left scar tissue a few millimeters in length.  Therefore, it looks like no "chicken dinner" surgery will be necessary and instead I will just have surveillance for the next five years to make sure nothing returns.

I have to admit, I have listened to the voice mail 3 or 4 times trying to make sense of it.  It appears the race has been finished.  Chemo is done.  No additional surgery is required (well except to remove the port which is still chillin in my chest). The blood results are all clear.  Do I dare to say it?  It appears I am cancer free and can declare this adventure over.  It's really a surreal experience.  I feel as if I should get something tangible at the end, you know? Like how a pregnant woman gets a baby after all her work and toil.  In this case you get nothing, which is exactly what you want, but it's odd to celebrate the negative.  "Look at me!  I am back to where I was 5 months ago!"  Odd.  But, oh so invigorating.  It feels as if my life has been on pause for 4 months and suddenly the possibilities of wonderful things from birthdays and holidays to the mundane things such as oil changes and clogged-up toilets are in view again.

Forgive the stream of consciousness, I haven't had time to process it all yet.

I do want to thank everyone again for their support.  I know I haven't answered everyone who has sent their best and those to whom I have gotten back have had to wait longer than they should.  There are truly no words though to thank you.

Update with Nothing New to Report

We met with the oncologist again.  Blood work is still fine: blood tumor levels are all normal and everything is working fine.  Another example of the joys of normalcy.  We had questions galore for him about what long-term surveillance might consist of or what the regime might be if, heaven forbid, the cancer returned, but he really didn't want to discuss any details until the CT scan is performed.  We heard today that insurance has approved the CT scan and it is scheduled for Thursday morning. 

I am hoping the masses have puffed away into nothingness, like something out of a Disney movie!  Although I have to admit that it is nice being in the pre-CT scan timeframe where ignorance is a bit of bliss...

Chemo is over.

Well, today was it.  Wrapped up the fourth and final round of chemo today.  I think the third round was harder somehow.  Feeling tired and like I've been pumped through of poisons all week, but it's OVER!  If feels like fifteen Fridays and the end of the school year all wrapped up into one.  We celebrated by eating my sister's homemade lasagna and watching the Olympics.

An Average Day of Chemo

So before this whole adventure began, I admit I was terribly ignorant as to what "chemo" actually was, how it was administered and all that good stuff.  I had a vague notion that it might be given via a shot, pills or IV, but that was about it.  Oh yeah, and it seemed to make people go bald.  So I thought it might be helpful to share how I get my chemotherapy.

Now each cancer type has its own regime.  Some testicular cancer is seminoma and can be treated with radiation in addition to or without chemotherapy.  I have non-seminoma, the more aggressive type and type has different options based on staging and what risk class you fall into.  Despite having the highest stage for this cancer, because I feel into the "good risk" assessment group, I could choose either three rounds of a combo of three chemo drugs or four rounds of a combo of two chemo drugs.  The statistical results of curing the disease are essentially the same, but you can avoid some of the potentially nasty side-effects of the additional drug, Bleomycin.  I chose the longer regime of four rounds.  So today is day three of round four.    Here's what it looks like.

I arrive at the cancer center at the hospital at 11:00 and check in.  Most of the receptionists and nurses know me well by now and we talk throughout the day.  It takes about 20 minutes or so before I get seated in one of the chairs.  I have my favorite, which is tucked away in this little corner with a large window behind it and looks like this:

There is always a pillow on and IV stand next to each chair.  The chair is a recliner complete with footrest and can recline almost all the way back.  Lucky me, today my favorite chair is available and I claim it for my own.  I have to wear a button-down shirt and either a v-neck under shirt or none at all, so that they nurses can access the chest port. I've seen other men who have forgotten and they've had to remove their shirts altogether.  The women, for some reason, never seem to forget to wear appropriate clothing.

First the nurses prepare to insert the IV needle into my chest through my port (see previous post "Because Inquiring Minds (seem) to Want to Know" for more on the port.)  They swab the port site and then spray a coolant on to try and numb the skin.  In the needle goes (barely hurts) and they make sure that the port isn't blocked by testing for a blood return in a syringe.

The first thing I get is 45 minutes of saline hydration. The hydration is important because the chemo drugs are so hard on the kidneys.  Then I get the "pre-meds" which consist of two anti-nausea medicines on Monday (only 1 the rest of the week) and a steroid to help my body not reject the poisonous chemo drugs.  This only takes 20 minutes or so.  Then I get the first chemo drug, Cisplatin.  This takes 45 minutes and is the wonder drug saving my life.  It is a platinum-salt drug; nothing like pumping heavy metals into your veins.  The introduction of this drug in the late 70s is what caused survival rates for testicular cancer to skyrocket from 10% to 70%-80%.  Additional drugs increased the survival rate to 90-100% in the 80s.

My IV bag collection

Then I get the second chemo drug, Etopside, for 90 minutes.  Etopside is a plant-based drug that stops the cancer cells from reproducing by disrupting their DNA.  After that's done, I get another 30-45 minutes of hydration of saline solution. After that the party is over and the nurse removes the needle from the port.  In theory, they could leave the needle in with a little valve attached.  I did this for all of round 1 because the port was still healing.  I haven't opted to do it since because 1) you can't shower with the valve dangling from you; and 2) I have small children who love to have pillow fights, piggyback rides, wrestling competitions, etc on a daily basis and it just gets in the way.  So out goes the needle and a little gauze gets slapped on my chest for me to yank off at night.  The whole process takes about five to six hours, five days a week followed by two weeks off for good behavior so that my body can recuperate.

I typically go to work for two to three hours before chemo and back again for 2 hours to wrap stuff up.  It helps mentally to keep up the work routine, plus it keeps the stress level down by preventing a huge backlog of work from piling up.  At the start of a chemo week, I am feeling pretty good and get a lot done.  By the end of the week, especially round three, I was fatigued and slept/rested during most of the day. For an A-type personality who has to be constantly going, I thought that being in a chair for five-six hours straight would be tantamount to torture, but it actually goes by relatively quickly.  I always eat lunch, nothing too smelly I hope. The dear wife has sat with me almost every day and my parents, siblings and religious leaders have been great about visiting.

Other TC patients have mentioned that the sight of the cancer center or the sound of the pump eventually become associated with the nausea of the medicines and make them sick.  I haven't had that problem myself. Sometimes the sound of the pump can make sleeping a bit more difficult, but I try to associate it with the tick of a clock which I find relaxing.

So that's what my experience has been like.  Just two more days to go.

World Cancer Day-February 4, 2014

So apparently today is World Cancer Day.  I would not have known this, except that when I arrived at work this morning, my co-workers (who I don't think of as co-workers, but more as friends with whom I have the privilege to work) had bought testicular cancer wristbands for everyone to wear.  At first we were confused why the color for testicular cancer was a purplish/lavender color. I would of thought a more manly color such blue, red, camo, etc. would have been more appropriate.  Then I inspected the packaging and saw that the exact color was "orchid."  Orchid, yes as in the flower, comes from the Greek word "orchis" for testicle; apparently because the shape of the flowers root tubers looks like, well a pair of testicles.  This explains why my initial surgery was an "orchiectomy."  So to whomever decided it was time for some linguistic fun when assigning cancer colors, well-played; I will proudly sport the "orchid-colored" band.

So not only did they buy waistbands to wear, they dressed up in "orchid" colors as well.  I call them my Ladies in Lavender.

I am very grateful to them.  They have been so understanding in picking up slack that I might have let fall through the cracks during my chemo weeks.  When I take my daily post-chemo week naps in my office, somehow the other office lights are always dimmed to help me sleep better.  Thank you all for your support! It means a ton.

More Good News (or really the lack of any news)

We met with the oncologist today.  Blood results came back and everything was in the ideal range.  Tumor markers have returned to their normal levels; kidneys, iron, white blood cell count, etc. are all fine.  So, thankfully there is nothing to report.  Next week, I return for my final round of chemo.  Around the end of February, I will have another CT scan done to see what residual masses, if any, remain; of course, the less, the better.

Then, best case scenario, I will go on a long-term regime of surveillance.  The doctor didn't discuss this, but from what I have read online, this consists of regular blood tests and CT scans.  Worst case (ok, maybe not WORST case,) I would need the "chicken dinner" surgery to remove any remaining masses.  I call it the chicken dinner because it reminds me of cleaning a chicken.  The masses would be removed from the lymph nodes and possibly lungs.  This would most likely be performed laparoscopically, thank goodness.  Apparently there are a few doctors in San Diego who perform this surgery, but hopefully that is a bridge I won't even see.

So that's the latest and greatest, and I couldn't have asked for better news.

Because Inquiring Minds (seem) to Want to Know...

Ok, I've been thinking about this post for a while.  From various half-asked questions and comments, I am guessing that there are those of you out there that would like some more particulars about various aspects of TC, chemo etc.  So here we go, we'll start with the juicier tidbits.  If discussion of intimate body parts and functions disturbs you, blur your eyes and scroll down to the cuddly teddy bear and continue thereafter.

For the original surgery to remove the testicular tumor, the urologist makes a slice in the groin, basically in the pubes about where your underwear band rests.  The cut is not made in the scrotum because the surgeon doesn't want to risk disturbing and thereby possibly spreading the tumor.  In my mind's eye, I then see the surgeon reeling in the errant testicle by the cords, but I didn't ask and don't like to dwell on that level of detail!

After the surgery, for 99%+ of all TC conquerors you still have one good, working testicle.  Problem is the bad one was stealing more than it's fair share of blood in its attempt to take over your body, so chances are the good one has possibly shrunk and hasn't been pulling its weight for awhile.  Good news is (here's a thankful shout out to the ever resourceful and thoughtful Mother Nature) once the bad one has been removed, your brain realizes something's wrong and it's time for the remaining boy to kick up both testosterone and sperm production.  So for the vast majority of men, after a few months, sperm and testosterone production tend to kick up to fairly normal levels.  Bottom line, I shouldn't need testosterone supplements and the sperm is doing just fine thank you very much.  Although, apparently during chemo, the sperm is toxic, therefore condoms are certainly a man's (and a woman's) best friend.

Let's talk hair.  As shown in previous posts, the stuff on your head starts coming out in clumps, so I took the initiative and shaved it all off. It keeps trying to come back, but I am fairly certain it would look horrific so I shave it off every week or so.  Facial hair has thinned too, I couldn't grow a decent mustache or beard at this point.

On to other bodily hair.  My eyebrows, eye lashes and arm hair seems mostly unaffected.  Chest and underarm hair has thinned maybe by 50%.  Pubes and upper leg hair by 70% or so.  It's lower legs are an odd story.  The inside of the calves is mostly unchanged, outside though the hair is completely worn off.  Maybe it's from rubbing against my pants or something.

Chemo time.  Because I will have a total of 20 days of chemo treatments, and the drugs are so caustic they burn the veins, I opted to have a port implanted in my chest.  Here's what it looks like before being implanted:

That circle-shaped part is about the size of a Hershey's Kiss with the top bit off (it all comes back to chocolate with me).  The port is implanted just under the skin and the catheter runs directly into a vein near the heart.

Here's what my port looks like today (complete with shaved chest from when they implanted it):

That bruised-looking area under the scar is where the port sits under the skin.  There's a slight lump under the skin, but that's really the only indication that it's there. When I go in for chemo the nurse sanitizes the lump with alcohol, sprays it with a coolant and jabs a needle like this into the port:

Frankly, it doesn't hurt much and I never feel it when they take it out.  I love having the port.  It saves the nurse from searching for a vein each time I go in and it frees up my arms and hands from having tubes in them while I am in chemo.  Maybe psychologically it helps too because I can't really see it when going through chemo. I really just see a tube going into my chest and that's it.

I hope that this helps answer some niggling questions that have been out there.  I will soon post on what an average chemo day is like.  Drop a line if you'd like a specific topic/question addressed.  Thank you all for your love and support!

Round 3 is Over!

Yesterday marked the end of Round 3.  It has been different than I anticipated.  No horrible hiccups this time.  I think I've learned to keep the nausea under control when it tries to fool me sneaking up in the guise of hunger pains.  The big change this time has been fatigue.  Not sleepiness, just simple, deep fatigue.  Thursday during chemo, I did nothing but kick back, close my eyes and sleep/rest on and off. Yesterday was slightly better, but sometimes the fatigue is so deep that reading emails and talking is just too much.  So, I have been taking it fairly easy.  We both crashed last night around 8:30 and called it a week!

I will post more soon, but wanted to give a quick update.  Looking forward to two weeks off and slowly building back to normal.  I meet again with the oncologist in a little under two weeks.  Interested in what he has to say.  He had mentioned the possibility of running a CT scan possibly before or during Round 4, presumably to get a visual of how things look on the inside.

Thanks as always for the comments, emails and cards.  We are doing well, things are looking great and, for the moment, it's a race to the end of chemo!

Round 3 Begins With Great News!

We met with the oncologist yesterday before beginning day 1 of Round 3.  He said that the blood test results came back fine and that the blood tumor markers have returned to normal.  Of the various tumor marker levels tested, he only had the HCG levels which started at 7,808 pre-chemo, fell to 89 after the first round of chemo and have fallen back to the normal range of  less than 2 after the second round of chemo.  Great news!  Only down side is I can't test positive for a pregnancy test anymore.  That's ok, I will pass up on that experience in exchange for a cure.  All the other numbers looked good too.  So, we hold the course through two more rounds of chemo.  If the pattern holds true, tonight is the night for hiccups from hell.  If the previous cures don't work (touching my toes while holding my breath, reclining on the bed, etc.) I have a medicine to take.  Frankly though, I am loathe to take anything I don't have to.

What TC post surgery and half-way through chemo is really like

People often ask how I am feeling or how things are going.  They are understandable questions and the underlying sentiment is one of genuine concern.  Trouble is there is no easy answer.  I have found that my previous vocabulary doesn't quite work to describe current experiences, feelings and bodily functions/responses.  Sounds fun doesn't it.

It's similar to someone who has spent her/his whole life playing chess.  You've learned the rules, the various strategies, attacks and defenses, etc.  You derive great pleasure out of playing with various opponents and the accompanying banter.  You lose as much as you win, but that's all in the game.

Then you wake up one morning and the rook has been mysteriously replaced with a toilet paper role.  That's OK, after all you can figure out what to do with it.  Each day though another piece gets replaced, until eventually all the original pieces are gone, replaced by random odds and ends.  Some have disappeared completely.

It takes just about all the concentration you can muster to keep track of what the pieces might be.  Then the board itself changes to a circle that occasionally spins.  The rules continue to change as well, sometimes several at the same time, sometimes reverting to the norm. Your opponents don't see any changes; everything has remained the same for them.  They can understand that something has changed for you, but are unable to see it for themselves.

So how have the rules changed?  In no particular order:

• acid relux
• hurting gums
• nausea (still not sure if that's the right word for it.)
• hellish hiccups (worst side effect by far)
• gas
• fatigue
• physical weakness
• crazy cravings for fat and salt
• sweet things no longer sound appetizing
• tinnitus
• random digits going numb/twitching
• hair thinning (to use the doctor's words)
• variations in stool ;)
• slight memory loss
• a port in my chest
• 4 inch scar in the groin
• numbness on the inside of sensitive body parts
• oh yeah, and missing a testicle!

All of these aren't present all the time and usually by the end of my two weeks off, most (but clearly not all!) have disappeared.  So there you have it.  All in all I can't complain because we are beating this thing and it could be so much worse.  But just because it could be worse, doesn't make it a picnic either.

Halfway there!

So round 2 wrapped up last week on Monday with a follow-up white blood cell booster shot the next day.  Thursday was the first day in two weeks where I didn't have to go to the hospital to be poked or pricked for something.  Frankly, that's one of the best things of being on an off week, actually being able to do something for my lunch break.  Granted, I haven't done anything more exciting than flop down on the couch in my office and take a nap, but that sure beats blowing an hour to have my blood drawn.

Me in all my bald glory.

I think I am getting used to being bald.  It still surprises me when I reach up to brush something aside and don't find hair, but I have broken myself of trying to wash my hair in the shower and being worried about bedhead when I wake up from a nap.  I haven't shaved it since we first did it two weeks ago.  The hair is putting forth a valiant effort in trying to come back, but I suspect it would be pretty patchy.  The gray hairs grow the fastest.  Maybe tonight I will lather it up again and shave it clean. 

There is at least one upside, everyone tells me I look younger, much younger.  One of the chemo nurses said he had been staring at me and my bald head all day, trying to remember who I reminded him of.  He finally decided it was Ricky Schroder.  Now, that was a blast from the past.  I got that so often in middle school that my parents and I had this schtick down where I would hear a gaggle of girls following me in a mall pointing and whispering, "There's Ricky!" I would give my dad a signal and he'd say fairly loudly, "Come on Ricky" and one of the girls would normally faint from an overdose of teen estrogen or whatever causes such excitement.

Lord Google Image couldn't oblige me with any pictures of Ricky bald, so I did up my own with Paint (hands-down the best free program to come with a PC).  I leave it to you, dear reader, to pass judgment as to any resemblance.  Either way, I'll take it as a compliment.

Pick the real Ricky...