My battle against melanoma is about to take a dramatic turn today – this time finally in my favor. Everything I’ve been working for since being diagnosed with Melanoma less than seven months ago comes down to today – more specifically – around 1pm today.

This truly is Day 0!

My secret weapon? Specially harvested, cultivated, and trained t-lymphocytes know as Tumor Infiltrating Lymphocytes (TIL).

My dear friend Cynde Lee found the work of Jerry Kong on-line (please support his work if you can), and my creative family has taken his original image and added some personalized touches to show what a TIL cell chopping down an evil melanoma cell might look like:

A drawing made by Linda, Krystyana, and Bas for me, inspired by Artist Jerry Kong. Shows my TIL cells in Ninja mode assassinating those dastardly melanoma cancer tumor cells in my body once my TIL is introduced mid-day or so today. (Links to the original this image is based on.)

A drawing made by Linda, Krystyana, and Bas for me, inspired by Artist Jerry Kong. Shows my TIL cells in Ninja mode assassinating those dastardly melanoma cancer tumor cells in my body once my TIL is introduced mid-day or so today. (Links to the original this image is based on.)

In addition to further encourage my TIL cells to take no prisoners, I have, with the help of many friends on Facebook, compiled the following music play list, which will be started as soon as the TIL cells have entered the wing my room is in here at NCI. The playlist actually goes for over an hour, but the most key fighting songs are in the first 30 minutes after the introductory march. It will about that long for all the TIL cells to enter my body and start their slow inexorable march throughout my body and into every nook and cranny over the coming weeks and even months.

The TIL Playlist

  1. “Ride of the Valkyries” – Richard Wagner
  2. “Eye of the Tiger” – Survivor
  3. “Invincible” – OK Go
  4. “Whip It” – Devo
  5. “One Way or Another” – Blondie
  6. “Another Bites the Dust” – Queen
  7. “I Won’t Back Down” – Tom Petty
  8. “We Are The Champions” – Queen
  9. “Run Like Hell” – Pink Floyd
  10. “Persuasion” – Carlos Santana
  11. “Hungry Like The Wolf” – Duran Duran
  12. “Don’t Stop ‘Til You Get Enough” – Jackson
  13. “Magic Carpet Ride” – Steppenwolf
  14. “Pump it Up” – Elvis Costello
  15. “With A Little Help From My Friends” – Joe Cocker
  16. “Cream” – Prince
  17. “Get Me Bodied” – Beyonce

Copyright laws prevent me from making the music listed here available, but if some kind soul reading this has a way of making this list available through legal sources on-line, please do!

I don’t know if I will be able to make the “Later in Day 0” post based on how I might be feeling after my first IL-2 treatment. But if I can’t, Linda will post to give you an update.

 

I have successfully finished being exposed to 1200cG (centi-grays) of radiation over the course of the past three days thanks to an awesome team of specialists. And I even have a certificate to prove it!

The wonderful certificate of appreciation I received this afternoon after my sixth and final course of full body radiation. Even got a hug from my radiation nurse!

The wonderful certificate of appreciation I received this afternoon after my sixth and final course of full body radiation. Even got a hug from my radiation nurse!

And still, beyond a dry mouth, and a bit of fatigue, not much wear to show for all that, yet. Hopefully the radiation did its job in killing off all my bone marrow – that’s what the main purpose was of getting the radiation.

The oncology radiologist I spoke to this afternoon after my final treatment commented that I went through the radiation treatment amazingly well, and while he doesn’t know exactly why, perhaps my relative youth, good health, and good energy levels might have helped. He also indicated that there is a chance that some of my organs may have been damaged a bit (which would be fixable or heal-able), but only repeated testing (urine and blood samples) will determine if any such situations exist. So far so good (and please continue knocking on wood – it’s definitely been helping.)

On to what’s next…

One of my favorite movie quotes is from the 1980 version The Blues Brothers:

Elwood: It’s a 106 miles to Chicago. We got a full tank of gas, half a pack of cigarettes, it’s dark and we’re wearing sunglasses.
Jake: Hit it!

There is the absurdity of wearing sunglasses at night, but in reality is it a checklist in the pursuit of a goal. In Jake and Elwood’s case, that is to deliver concert proceeds to a tax collectors office in Chicago, while being sought by the police, and an extremist group.

My current version of this movie quote is:

Jake: I’ve just been radiated and chemo’d. It’s five more days until the treatment is over. I have a couple small bags of Haribo gummi bears, a full jug of water, no idea what I am facing and am covered by a fluffy duvet.
Jake (speaking to myself): Hit it!

Okay. Maybe not as memorable, but to me it has the same feeling. And in my case the ultimate goal is NED – No Evidence of Disease.

To get there I need to get through the next five days of treatment with IL-2 in the form Aldesleukin. From what everybody has said, intensive IL-2, which will start to be administered few hours after my TIL cells are administered tomorrow in order to super-charge the TIL cells and help them achieve their cancer-killing task. (But, as a caution, it will not be clear for at least a month how effective they were, and may take many months to verify total shrinkage and disappearance.)

After the first administration of IL-2 I will continue to receive 15-minute infusions via IV every eight hours until my body just cannot handle it anymore (based on physiological responses related to breathing, organ function, and also on mental function). There are a maximum of 14 doses of IL-2 that will be administered, but my nurse has never heard of anyone that has even gotten close. IL-2 comes with fevers, chills, rigor (shaking during chills), and all sorts of other pretty scary things – more details in the fine print available here.

Whenever it is that my IL-2 treatment ends, I will be a bloated wreck for a bit (an IL-2 side effect is the release of stored water in the body being pulled out of its regular places, resulting in a 20-30 pound “bloat” – and yes, I will have someone take pictures of Puff Daddy Jake :-) ). But I’m betting on being a bloated Jake on his way to NED.

And, speaking of photos – I know I have been remiss in providing images with posts lately, so below are several images to captured over the last week:

Linda and the kids move in to my hospital room to keep me company. Here everyone was getting their wifi connections working. Honestly, they really do pay me a lot of attention when I'm not sleeping

Linda and the kids in to my hospital room to keep me company. Here everyone was getting their wifi connections working. Honestly, they really do pay me a lot of attention when I'm not sleeping. We play games, watch movies, talk, and even torture the kids with doing their more traditional forms of schoolwork.

My IV tree the night they were administrating my first dose of Cytoxan to kill my current immune system. Festive!

My IV tree the night they were administrating my first dose of Cytoxan to kill my current immune system. Festive!

 

Cyclophosphomide a.k.a. Cytoxan, close up.

Cyclophosphomide a.k.a. Cytoxan, close up.

Linda and the kids enjoying a take out meal which I got to try part of with doctors' permission. I managed two wings and two fries before I was full.

Linda and the kids enjoying a take out meal which I got to try part of with doctors' permission. I managed two wings, a small chunk of dark meat, and two fries before I was full.

 

Here I am in my hospital room working on this blog post about Day -1, after finishing my final radiation treatment. That's Renaissance Bear next to me.

Here I am in my hospital room working on this blog post about Day -1, after finishing my final radiation treatment. That's Renaissance Bear next to me.

 

 

Day -2 – About Halfway There   October 4th, 2011

One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.

It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.

As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.

I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.

I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.

I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.

Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.

So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).

For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.

To N.E.D.!

P.S. Any plans to give blood yet? If not, please think about it.

 

My neutropenia continues. I’m down to an absolute count of 54 neutrophils per cubic millimeter of blood, and at this rate I without doubt will be down to as close to zero as is humanly possible before my TIL cells get administered on Thursday.

Until then I’ll be getting a whole bunch of full body radiation. I went through my first rounds today – the first around 8am and the next around 2:30pm. A similar schedule will continue tomorrow and Wednesday.

Having also just had my last dose of fludarabine administered about an hour ago, I am now officially done with the application of chemotherapy and am moving on to deal with the side effects.

My energy levels are pretty darn good, and I’ve not had nausea (everyone, please find wood to knock on!). And my sporadic fevers appear to be dissipating.

I have been told that having Linda take me for daily walks around the amazing Hatfield Center I’m in here at NIH has been very helpful for both the energy levels and the fevers, although I have to wander around with a face mask (required because of my neutrapenia) and gloves (additional paranoid measure on my part). However, in that costume people rapidly make way for you if you generate fluid sounding hacking noise. People are pretty funny in how they respond to someone in a face mask.

I have also had some light-headedness today, but I’m told that the Adavan I’ve been told to take before radiation is the cause.

So, all that’s the good news.

Less pleasant effects are appearing however, including intestinal distress (requiring three Imodium-equivalent loperamide tablets, to, um, stem the flow) and bowels which are trying communicate audibly in a language I have yet to parse (I think it’s a dialect of Wookiee).

I have also developed a fair bit of pain at the base of my jaw, on both sides. Makes chewing painful, and the outside of the jaw is rather tender.

And from a continued oral perspective, I now also find myself with salivary glands that don’t really produce any saliva except for some thick mucus, sometimes. So, at times, when I try to eat anything my mouth gets all gummed up. I need to keep moistening and loosening things up in my mouth with lots of liquid – water seems to work best, flavored drinks and carbonated ones the worst). At other time with dry mouth, eating anything without its own liquid (like the protein bar I am masticating now) is like chewing on sawdust. Ugh. And if you don’t hydrate the food in your mouth, you could choke on it. Death by dry cracker. Not a pretty way to go, I’m sure.

The source of these side effects would tend to lean towards the chemotherapy – still messing with my system residually, as the radiation has only just started. None of the doctors have been able to pinpoint the actual source so far, and past consults have indicated that both chemotherapy and radiation can contribute to dry mouth and jaw problems, as well as diarrhea.

It is becoming clear to me that it is not for me to point fingers at a particular treatment component to find blame for the individual side effect, but instead just accept these side-effects as they come along and find the best way to deal with them, and hope they go away soon.

The only thing that appears 99% certain is within two week I will have at least lost the hair on top of my head, but as one of my nurses points out regularly: “Jake – with you nothing is predictable.”

Let me close with a quote out of a fortune cookie Bas got last night: “When you have no choice, mobilize the spirit of courage.” How apropos, eh?

So onward to tomorrow’s unpredictability with the spirit of courage…

 

Day -4 – Gone Neutropenic…   October 2nd, 2011

The duvet Linda mentioned in the previous post, combined with being untethered (no IV), and an Ambien, led to almost 12 hours of sleep, with just a few interruptions. I went to sleep just past 9pm last night, and woke up just past 9am. I did have a fever during the night, but Tylenol helped bring that under control for a while.

This morning when I woke up I had a fever again, and also learned that I had met the requirements for neutropenia – meaning a neutrophil count of less than 500 (based on a white blood cell count of 630).

My nurse calls me an over achiever. First I pee up a storm, and now I’ve gone neutropenic at least a couple of days ahead of schedule.

Because of the fever which is coming and going while neutropenic I’ve been put on a broad spectrum anti-biotic (since I have very little of my immune system left), as well as all sorts of other drugs designed to prevent fungal infections, cold sores, acid reflux, and all sorts of other things. I’ve been told that by the time I finish my treatment in eight days, I will have had more different prescription drugs during the treatment than I have had the entire part of my life until now (since I have no normal prescriptions otherwise).

I was light headed this morning, but figured at least part of that was due to lack of much food yesterday, so I’ve slowly been working to eat a bit more today, and it has helped.

At present, I am sitting in bed (hospital beds are pretty cool with all the different angles they support, but I wish they were a wee bit wider), taking in one of my first two units of blood for the day. Having such a blood transfusion is necessary because my hemoglobin (red blood cell related) counts are way down. I will likely have these blood transfusions every day or so while I’m neutropenic.

And that brings to mind something else. A lot of people have been asking Linda and myself what they could do for us and to let us know if we need anything. Many of you know that we are difficult people to help (and buy presents for) because if we need something we just go out and get it or take care of it pronto ourselves. And with the uncertainty of what my symptoms will be post-treatment (e.g. nausea, fatigue, loss of appetite), we can’t really plan ahead very well either. And it doesn’t help that I will be limited to a neutropenic diet, which means we can’t accept food gifts for three months, however much we’d want to.

But a practical thing that most of you can do for us, for yourselves, and for cancer patients around the world, is give blood and platelets. When I had my platelet infusion last week, for example, I received six units of platelets, given here at NIH the day prior by six different people. And the dozen and a half, or so, units of O-negative blood I am going to be receiving as part of my transfusion also come from individual donors (although not the day before, like platelets). In fact, Linda will be donating platelets tomorrow (you can normally only give blood or platelets every eight weeks, and Linda last gave blood exactly eight weeks ago at Mass General). Thank you Linda and Mona for this excellent suggestion!

Today’s course of treatment continues with my fourth dose of fludarabine tonight, and early tomorrow morning I get my first of six doses of full body radiation – two doses a day for three days. Unclear how I will be feeling after those. However, what is pretty clear is that my immune system will be down to zero in time for my TIL cell administration on Thursday, and that is awesome. Don’t want anything getting in the way of my melanoma fighting cells!

 

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.

 

The Start   September 29th, 2011

From Linda…

The day began early at 8am with a CT scan to measure and check the growth of his tumors. At this point, they told us that the target start time for chemo would be 4pm.

The powers that be decided a MRI would be a good followup to get a more exact measure and Jake was on call for a time slot. About 2pm we got the COA or Certificate of Approval that Jake T cells in the lab were a 100% go for the start. Yeah! Woohoo! Yippee! This meant that the pharmacy could start making Jake’s personal chemo cocktail.

Jake arrived for his MRI at 3pm to be told it had broken down, but they got it up and running to get him in by 4pm and out about 5pm. Finally, we were just waiting for the chemo.  At 7:30pm, Jake officially began the chemotherapy portion of his treatment. Treatment has begun!

A toast to N.E.D.

and a mantra from the chaplain

 

All will be well
And
All will be well
And
All manner of things
Will be well

 

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.

 

Tuesday: Starting with a restless and mostly sleepless night, I arrived in Bethesda around the middle of the day, and checked in my room in the 3NW immunotherapy wing of the Hatfield Building, greeting all the fabulous nurses I have come to know from my prior stay. After unpacking, I had a chest X-Ray, an EKG, and blood work done. All look good!

My platelets, which had dropped to a level of 30 last week were up to a healthy 130, which resulted in a high five with the doctor as we celebrated, albeit breifly, that my blood counts were good enough to allow for the protocol to proceed unimpeded.

Linda and kids were here by late afternoon and settled into the adjacent Safra Lodge, which is quite a nice place. The Lodge is on the NIH campus, same as NCI, and has great facilities for families whose loved ones are being treated only a few hundred yards away. The rooms themselves are like regular hotel rooms, but there’s a huge shared kitchen area for the storage of food, cooking supplies, and leftovers, and there are a number of nooks which provide quiet space for stressed out family members, and in our case places our kids can work on school stuff.

Best of all, the Lodge is free – which is important in an area where the average hotel room night tends to run around $250/night. As one might imagine, the Lodge is quite heavily booked – up to two weeks in advance, so Linda and the kids will need to move to a regular hotel on October 2nd for four nights before moving back to the Lodge, unless those dates happen to free up for them. They are back until at least October 20th, my projected departure date.

I had expected Wednesday to be the start of chemotherapy, but that appears to be actually Thursday.

Instead, Wednesday provides a buffer day in case there’s a need for additional scans or labs, which will be determined after rounds in the morning.

We will have more details on the actual treatment process later today, probably.

Also, Linda has been set up with an account on this blog, and may post in my stead should I be feeling unwell enough to post on my own.