Day 4 Well a little more sleep   October 10th, 2011

From Linda…
Most of the day Jake rested between receiving more platelets and whole blood. We also learned that while whole blood must match your blood type exactly, platelets don’t have to at all. Jake’s whole blood was an O negative while the platelets were AB positive. Something new learned every day.

We walked Jake a few times and kept him company. The dry mouth is still his most frustrating side effect, but he keeps trying different things. He bravely tried a lemon ice (too strong), orange sherbet (too thick and gloopy), marinara sauce (too spicy) and hospital pizza (too doughy). He is still looking for just right but will settle for tolerable.

On another note, several people asked about isolation or not for neutropenia (zeroed out immune system)

We discussed this with one of Jake’s nurses a couple of days ago. And yes here at the research center someone has done a study on it. The difference between isolation and just good precautions was pretty much even when it came to infections.  The nurse actually said that Jake was more in danger from the microbes he came in with than anything we might bring in. A patient might have a fungal infection or a bad gut bacteria that their immune system had been holding at bay which could run rampant once the immune system is weakened. Although in Jake’s case, we would know that by now. And part of the precautions is a litany of preventative medicines like antibiotics and anti fungals. Plus if his temperature starts to rise they do immediate cultures on his blood, this has happened a number times but it has never been an infection, knock on wood. 

For us the invasive visitors, we have mandatory antibacterial cleansing of hands at his door. We don’t share cups, utensils, or food. No kisses except in the air and from a distance. If we get the least bit snuffy or whatever, we can’t visit and we even have to report ourselves to the clinic to be checked. Jake walks around the hospital with a face mask on to protect him from errant germs. Since we walk outside, we take off our shoes at the door. No plants, flowers, fresh fruits, etc. in the room. Only Jake gets to use his bathroom.

Of course, since the infection level is equal, there must be some benefit to the patient having family under foot. Human contact even if it is though a blanket means a lot. We are also a great distraction – talking, playing games, watching shows together. We are also extra help: getting warmed blankets, retrieving his special foods from the patient refrigerator, doing his laundry, taking him for walks, massage his feet, etc. But really the benefit to both sides is an emotional one, we get to feel like we are helping and Jake doesn’t feel alone either. Again studies have shown that patients do better if they have family and/or really good friends to help them through these things.

 

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Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…

 

Day 2 Slow and uneventful…yeah!   October 8th, 2011

From Linda…

The night went well with sleep only interrupted for medications and vitals about 3 or 4 times. They continued to give Jake the medications to counter the IL2 effects for 24 hours after the last dose. Jake decided he was up for the morning with his 6am meds and sent me back to the Lodge to collect some more winks with the kids.

Jake had follow-up chest X-rays this morning which showed enough improvement in his lung congestion that they took him off the extra oxygen. Jake is happy not to be tethered once more. He is hoping he won’t have to sleep upright tonight. They also started him on meds to help him shed the 5+ kilos of water he gained due to the IL2.

Bas stayed with Jake during the afternoon while Krystyana and I ran errands including buying special foods that sounded interesting to Jake’s suffering taste buds and stomach. He is eating more although it is taking a lot of effort on his part.

Krystyana took Jake out for a walk in the halls under nurse’s orders. He needs to start moving more and lying down less to regain his strength and combat fatigue. 

Jake was feeling well enough that the sent me back to the Lodge for the night so he can go to sleep early himself tonight. Sweet dreams.

 

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Day 1 more IL2 and Stem Cells   October 7th, 2011

From Linda…

Jake had a rough night. I was thankfully he avoided the rigors after Il2 dose #2 and #3. He developed chills about 1.5 hours after each but a quick wrap-up with heated blankets sent him back to slumber land without more drugs.

While he was sleeping, I skipped out about 9am to grab a shower and breakfast at the Lodge. When I got back with the kids, Jake was awake but looking very weary and drawn. The nurses and doctors were concerned that his lungs were suffering from water retention which was causing labored breathing. They put him on oxygen, took some chest x-rays, and began a close watch on his vitals.

After a careful review, the doctors decided no more IL2 for Jake. Another dose would just worsen his symptoms and land him in the ICU. Although the protocol allows for up to 14 doses (no one makes it that far), the average is 4-6. The doctors were keen to reassure Jake that a strong response to the IL2 means happy active warrior cells, but success is NOT dependent on the number of doses. Those evils rigors on the first dose were a strong response.   The good news is Jake can now start his recovery process.

And even more exciting was the event of the day “Stem Cells”. As you know Jake had Total Body Irradiation (TBI) which wiped out his bone marrow. Today, Jake received back the stem cells collected from his own blood several weeks ago using apherisis. These will repopulate his bone marrow and get his body making blood cells again. This usually takes about 10 days to occur.

I’m spending another night on the fold out bed but we are both looking forward to a little more sleep.

 

Day 0 Draws to a close   October 6th, 2011

From Linda while Jake catches a cat nap…

Jake’s happy warrior TIL cells needed a feeding of IL2 to support them. At 3pm, Jake began his first dose of IL2. It is an infusion which takes about 15 minutes. They had warned us that side effects like fever, chills, nausea, and rigors, usually develop within one to two hours. Additional medications would be at hand to combat whatever developed. The worst of the side effects should subside between doses.

About 45 minutes after the infusion, Jake developed chills, nausea, and the rigors came on fast and furious. While his nurse got IV meds for the nausea and rigors, the kids and I went for the heated blankets and wrapped him up tight. I had been massaging Jake’s legs, but snuggling up close and holding him tight worked best. The kids and I held him close until the meds worked their magic and the rigors became an unpleasant memory.

Within another hour, Jake was cautiously sitting up and his fever had disappeared. The doctors told him later that generally a larger man’s muscle mass reacts more strongly to the IL2 but likely the reaction would lessen as the doses continued. They also increased another medication to hopefully lessen this as well on the next IL2 dose. He was feeling well enough to sit on the edge of his bed and watch a tv show with us before the kids headed back to the Lodge and bed.

So here I sit blogging in Jake’s room on a club chair that folds out to a single bed. I’ll be staying with Jake tonight as his IL2 dose #2 is scheduled for 11pm, followed by dose #3 at 7am. 

 

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Day 0 – The TIL Are In   October 6th, 2011

Starting just before 1pm today here in Bethesda, 69.3 billion TIL cells started their journey from the incubators and processors at the TIL lab here at the National Cancer Institute, and minutes later were becoming part of the body their forebears originated from five weeks ago.

I had a chance to meet some of the people in this fabulous TIL lab earlier today. I even got to meet and shake the hand of the woman who mothered my cells into splendid abundance. I thanked her and her colleagues profusely for helping me get a shot at a new beginning with their wondrous science and dedication – the TIL Lab folks rock!

The billions and billions of TIL cells are now circulating throughout my body, and in a half hour will be getting turbo charged with my first dose of IL-2.

That’s it for the moment. Need to focus on the what the nurse needs of me now :-)

 

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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…