Day -5   October 1st, 2011

From Linda…

Jake had his second and final dose of Cytoxan last night. He was a very weary “Urinator” that greeted us this morning. He was still dealing with chills and a small fever that responds well to Tylenol but was battling a queasy stomach all day. The wonderful team of nurses kept a watchful eye on him. The mandatory pee schedule ended at 7:30pm tonight so he is looking forward to longer stretches of sleep tonight. Although he was greatly disappointed to find out he would have to use the plastic urinal to pee in for the entire rest of his stay so they could track is output.

Jake voiced his growing displeasure with the cotton blankets he had piled high on his hospital bed. So Krystyana and I hopped on the Metro bound for “Bed Bath and Beyond” at the Chinatown station in DC to buy Jake a comfy, homey duvet to combat his chills. Bas kept Jake company while we braved the cold rainy day.

Tonight, Jake was “untethered” as he put it, meaning he will not be attached to an IV tonight. He was quite tired so we left him to rest early at 8pm. We shall imagine him snuggled down in his duvet. Just having the duvet put a small smile on his face.

Tomorrow is a brief day of rest between treatments. He will continue his course of Fludarabine tomorrow with radiation starting first thing on Monday morning.

 

Day -6 Towards TIL For My Melanoma   September 30th, 2011

Day -6 Towards TIL

I guess no one made clear to me that I was supposed to be suffering from nausea the morning after my first dose of Cytoxan. When I greeted the doctors on rounds this morning all cheery and upbeat they wondered if it had been administered. Apparently my lack of nausea is something of an anomaly – I prefer to think of it as me being special.

The last 24 hours have been spent peeing and peeing and peeing. I think I’m pretty close to 12 liters of urine output at this point, and I still have another 23.5 hours to go of urine madness. I am required to pee into a “urinal” (not the men’s room kind) – it’s a plastic jug with a handle, and it’s got measures on the side so that the nurses can verify I am meeting my minimum quota of 312 mL per two hour measurement period. I have far exceeded that. In fact, one of my nurses has commented that if I were one of the X-Men super heroes, I would undoubtedly be known as “The Urinator”. Beware his toxic yellow streams!

The issue with peeing this frequently (at times every 15 minutes due to the application of a drug called Lasix (also known as Furosemide) is that you don’t get much sleep, so my biggest side effect from the first 24 hours of my condensed chemotherapy is being really tired. I also had a headache and a small fever which both seem to have gone away after the application of Tylenol.

Linda and the kids kept me company for most of the day, which was very comforting.

As I write this, I’m getting my second dose of Cytoxan. I’m knocking on wood and hoping that nausea and diarrhea don’t follow since I’ve avoided them so far.

I’ve managed to catch a half hour of sleep here and there and that’s helped. Knowing I only have another 23.5 hours of pee madness ahead of me provides me a goal to work towards. And tomorrow night I get untethered from my IV after my dose of Fludarabine, so I can have a night of unencumbered sleep.

 

Chemotherapy Starts Tomorrow   September 28th, 2011

Today ended up being a quiet day that I managed to spend almost entirely with Linda and my children. Due to the on-going growth of my tumors in at least my right thigh (I have several that are now palpable (feelable), but were not two weeks ago), I was scheduled for a new CT scan to provide a better reference point for the post-treatment CT scan.

I’m pleased by the idea of getting a reference scan right before treatment because it will show more clearly how much tumor shrinkage has occurred due to treatment when compared to my first post-treatment scan in month and a half or so. If the scan from two weeks ago were to be used for this comparison, the tumor shrinkage amount would be skewed by the intervening new growth, and I would have to wait for the second post-treatment scan for more accurate results.

Anyhow, they ended up not having an available slot for a scan today, so I’ll be doing that early tomorrow morning instead, hence some extra hours with the family, in which we ran some necessary errands and enjoyed a nice meal out together – the last one for quite some weeks.

My treatment schedule in chart form - Day -7 is Thursday, Sept. 29, 2011

My treatment schedule in chart form - Day -7 is Thursday, Sept. 29, 2011

Tonight at 1am I start getting hydrated by IV in preparation for the start of my chemotherapy tomorrow.

During the day tomorrow I will receive my first of two doses of Cyclophosphamide (Cytoxan), a toxic chemical designed to  stop cell growth. It is toxic enough, I understand, that the nurses who bring in the one hour IV drip bag do so in a haz-mat suit to avoid exposure (since they have to administer the drug frequently). I hope to remember to take a picture of that.

I will get a second dose of Cytoxan on Friday. I will also start a five day course of Fludarabine tomorrow.

During the first three days of the chemotherapy I will be required to urinate (pee, piddle, wee wee, wizz, tinkle, etc.) every two hours, around the clock, in order to prevent Cytoxan-tainted urine from sitting in my bladder for long periods of time and causing bladder damage, and will also receive Mesna, a medicine intended to prevent the bladder from being irritated by such frequent use.

I understand, in addition to the other side effects from the drug (including major nausea), that being constantly woken up and urged to pee is one of the most exhausting parts of the treatment (the other being the IL-2 which comes at the end). Fortunately, I’m a peeing machine, so I should be up to the challenge. I should add that I will be heavily hydrated to ensure there’s enough liquid in my body to produce results every two hours.

I am guessing, based on what I’ve heard and read (and related above), Linda will be posting updates here instead of me until I’ve been off the Cytoxan for at least a couple of days.

Most patients appear to better deal with the Fludarabine which continues to be given for three days after the Cytoxan.

We’ll see.