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"!