#fiskFamily

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Update and Next Steps

We got some bad news in January: the tumors are growing again. Marginally. Incrementally. But getting bigger. So that means we are switching to a new chemo. Scary stuff, right?

I have had my first infusion just in the last week. The new stuff is called Avastin. Then on the third infusion (these come every three weeks) we will add in another medicine, called Carboplatin, which is supposed to be rougher on patients than the Avastin. We shall see what it does with me. If it stops tumor growth, that's job one, and we'll manage the side effects as we go.

Of course statistically people with my diagnosis last between two and five years since diagnosis. I'm three years into that. Of course my aim is to live well beyond five years, but we also have to be prepared for things going sideways, and fast. One plan is for me to make videos telling the boys stories about myself. Heavy stuff.

We had a scare with Henry in February where he woke up puking one night and had abdominal pain. He was initially diagnosed in the emergency room as needing his appendix out, but later downgraded to a bad stomach flu. He was fine within 36 hours. Scary time looking at your sweet boy on the verge of surgery. But it worked out and we had great support from friends during it all. Phew!

The boys are doing well overall, and playing together more and more, which swells our hearts up with happiness.

We've had a number of great visits from friends and family lately. Both boys are in school. I am getting both physical therapy and occupational therapy (I think everyone knows by now I am using a wheelchair full time now). I still harbor hopes of getting my legs back. We shall see. And we are looking forward to Spring and Summer in the new neighborhood. Being on the first floor now, I can wheel myself out the door on my own now. No more asking friends to carry me down ten stairs like in the old place.

Inga remains *the best wife and mom ever* taking care of the whole family. My ability to be helpful (with kids, meals, dishes, etc.) is all but gone, being in the wheelchair. She is the Rock and cornerstone of this family and we love her for all that she does. If you ever want to lend help to our family, my message is: find a way to help Inga. (She got a super cute new haircut a few days ago.)

We hope everyone reading this is happy and healthy and doing well!

(2/28/22)

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This Is A Long One...

Hello Everyone, a LOT has happened over the last four months and I'll try and cover the essentials. I had over 20 pics ready, but tumblr only let's you put ten in a post, so we'll make due with that (but there a lot of ones I would have liked to put in). I'm going to err on the side of kid pics. And I'll try and post more frequently from here on out. Happy moments, bad news tempered by planning, and thoughts about the future below...

55th BIRTHDAY

Wow, what a day! Inga set up an amazing day for me. Friends Bryan and Hillary and their boys brought over some breakfast, then later we had a zoom call with a ton of people/friends/former colleagues from work I hadn't seen in forever. THEN ...I got my hoped-for ukelele!!! (Henry loves to play it too.) Also, I must have had close to 50 birthday cards that she organized and displayed on the wall. And chocolate cake, my favorite. Not so bad to turn 55. How did I get old like that? :)

VISITS

We have had SO many visits I apologize: many of those pics I was forced to leave out, but I wanted to include some. Aunt Kristina flew in from London, the Somashekhars came from Chicago, and Jessica from Upstate NY. She is fighting an arguably rarer and more dangerous cancer than I am. She was also my first call when I got diagnosed as I had no idea how I was going to tell Inga. I've known her over 30 years. There was the Infante family; Tracy and Shawn; Jackie and Warren; Sheila, Tim and Sunil. I'm surely forgetting some people. My apologies, it's not intentional. And several visits scheduled for July already: Kelli and Dave; Amy and Tamara; and my oldest friend Bill D. We feel grateful for all of you!

HENRY GRADUATES PRE-K!

Henry continues to grow up so fast and will enter Kindergarten in September. We got some great school pics and the red pants pics were on his graduation day, but I like the informal ones (before and after the ceremony) better than the official moments. Also, both boys look good in hats, as well as holding a uke.

HEALTH, BAD NEWS AND EFFORTS TOWARD THE FUTURE END

We've been getting bad news the last several months on tumors: they continue to grow ...*incrementally*. We were on the first chemo since Fall of 2021. In January it became clear the tumors were growing. Again: incrementally. Ideally tumors get removed and don't come back. Because mine is a spine-brain/nervous system cancer, great care is taken with surgery not to damage my spine, so I don't get paralyzed. That means they haven't been able to resect all of my tumors completely. Pieces get left behind and we try with chemo to keep those bits dormant. (We have not opted for brain surgery because those lesions are pretty small. I have about three spots in my brain, one at a very dangerous-high-trafficky spot at my brainstem), and the two in my spine have been behaving.

The first chemo did that job for awhile, but then the tumors started growing again in January. New chemo starting in January. Nope, tumors still growing. Incrementally. (Frankly, I'll take incrementally over something growing quickly, which we saw in spring of 2021.) I won't get deep into the emotional roller coaster that puts you on. Not fun with lots of crying --not in front of the kids of course. We've also had some miscommunications with the drs., as well, that made things darker. I admit my typical Pollyanna "I can beat this" even went away for a time. That has been cleared up and we are back on solid ground again. Mostly. Even I need to admit it's very unlikely I will last another five or ten years. Or one or two. ...We just don't know.

All that being said, I WILL continue to fight, and do my exercises. I understand how unlikely it is I will get my legs back, but it's something to strive for. I will start the new chemo in July. Fingers crossed. We have started making videos of me talking about my life and thoughts that will be for the boys (thanks Jesse). I also have a book to fill out asking questions about my life, also for the boys (thanks Tamara). It's slow and yes, emotionally draining (Inga keeps away during the video sessions). Believe me, I feel terrible about leaving family behind. "Grief is the price you pay for love," as I've read and repeat in my head now and then. Yes, I've got tears rolling down my face now. But the boys are playing outside and I will join them soon. No more 'sad dad' stuff for now. My apologies if I'm making you feel bad. Chin up: it won't last. :)

Some good news: I've been able to eat a lot more and am gaining weight again. I'm aiming to break 170 soon. I had bottomed out at 149.9 lbs(!). My normal weight was 185-195 most of the last ten years. I am exercising and feel as strong as I've been in awhile. Everyone notes that the color in my face is really good, and how much (and how dark) my hair has grown back. How long will I last? Nobody knows, but I'm definitely thinking I can be ok into New Years/ 2023. Again, could be a couple months if things go sideways, two years, five I think is not impossible. Nobody knows.

We love you all. Give your family and friends your love. It never hurts to remind them of your appreciation. Until next time, take care. :)

(6/29/22)

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Apple Picking, Halloween, Chemo, New Home Update

Well, we didn't make it to the beach this year, but we did manage an apple picking trip.

If you didn't know, I am mobile via a wheelchair these days. Some how the transition to a wheelchair doesn't bother me too much. Though I still make some strengthening exercises efforts now and then, my legs are otherwise not strong enough to rely on. I don't know the exact day, but this has been in effect for weeks now. The current theory is this weakness is residual from the radiation, but it's far from conclusive. Overall, the tumors remain dormant.

I am now, after about a month off, back on the chemo. It was nice to have the break. The next phase is another planned three-month stretch (through January 2022) and we'll see what's next after that. Since we have three separate visits scheduled for family, November through December, we'll be busy until January anyway. My goal is to maintain my weight, or gain some. Fingers crossed.

The new place is nicer, quieter and just plain better, in every way. (The Halloween pics of the boys are in our courtyard.) Inga handled a very difficult move with aplomb, and with the help of local friends, who frankly feel like family with the amount of help we get from them, like all the time.

I'll dive in a little on the chemo process since some people have asked: Every three weeks Inga and I will drive in to NIH. If you don't know it, it's a huge complex in Bethesda. We've been going so long now we even have our own badges (lots of security at NIH). We go to Phlebotomy to get bloodwork taken, then usually to the main courtyard cafe for coffee and muffins. After that we head to the NIH Day Hospital for the infusion. Because the chemo is a "compassionate use" medicine (meaning not yet approved by the FDA for general population use, but for some reason they said yes to my doctors), they have to have the NIH in-house pharmacy make it. This takes hours. Inga (thank God for my wife) and I have waited anywhere between two and a half and five hours for this to be done: it's a looooong wait. (And this is why I included the picture of her reading to me. We used to read books to each other from since we started dating.) Once the medicine arrives they have like three different people verify my identity, and then the drip can begin. 75 minutes later we are headed home.

We had a police-boy and a toddler-bee go trick or treating (Inga and our lovely friend Odile K. took them) and they had a great time. Inga and the boys also carved our pumpkins. Something so homey about lit-up jack-o-lanterns at night, right? We still have them on the patio.

As always we thank all of you for your support. We hope everyone is safe, happy, and looking forward to the Holiday season! Take care everyone! :)

(11/6/21)

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Good News!

The latest scan results show the cancer has been stabilized/slightly reduced. This news was very much welcome relief after all the bad news we have been dealing with this year.

I then sat for the latest chemo infusion. We shall continue this treatment for the foreseeable future.

In family news: Henry is in school (Pre-K) now and seems to love it. Lukas is learning new words all the time and is turning into a climber like his older brother.

(8/5/21)

Thanks everyone, as always, for your love and support.

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Chemo Days

Been awhile since I've posted, and treatments have moved forward. I started chemo about ten days after getting home from the radiation.

I'm about to start my 3rd chemo infusion and it has been a challenge. Side effects are having a big impact and I fight exhaustion most days.

Inga took the boys to the zoo for the first time in a loooong time. (When we lived in DC we used to walk there regularly.) It was Lukas' first time!

We will do new scans at the end of July to see how the chemo has done. Fingers crossed.

Thanks as always for all of your love and support. It matters to us so much.

(7/16/21)

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Round Two ... DING!

HELLO EVERYONE! Weeeeeelcome to the Cancer Dome! OK, that’s a reference to both the movie “Mad Max Beyond Thunderdome” and Public Enemy’s song “Welcome to the Terrordome.*” Yes, both are cultural references from over 30 years ago, so if you don’t know them (or care), feel free to move on. No harm no foul. 

[Medical Stuff paragraphs] File under “this might get a little complicated.” OK, two infusions have happened without anything too scary happening. That’s month number one. This is an eighteen month ongoing clinical trial. Each subsequent month thereafter I’ll get a single full dose. 

Now, for those of you following progress you may know I have been dealing with a distended stomach (as I’ve been calling it since it appeared immediately after the surgery) that has been among my more painful symptoms. My new primary care physicians have suggested it looks like a hernia. And another dr. at NIH, who was checking me out pre-clinical trial, also thought it could be a hernia. How you get a hernia from spine surgery is another conversation. Let’s table that one for now. 

A potential issue is my primary care physicians are sending me to see a general surgeon (who apparently are the people for hernias) because my stomach pain has been spiking more and more in recent months, and especially the last two weeks. Since one of the side effects of the drug that is in the clinical trial is inflammation (of the lungs, bowels, etc.) -that could be part of it, but this pain began long before the first infusion. Also, a certain level of practicality would bring one to surmise surgery during a clinical trial is probably a bad idea. Like I said... this may get a little complicated. For now, extra rest, chamomile tea, a cocktail of Advil and Tylenol, and epsom salt baths help reduce the pain. And we shall see what the surgeon says this Tuesday morning, and go from there. 

Also, our planned Oncologist, Dr. Ozer, didn’t work out (for insurance reasons) and we now have an appt. with Dr. Paul Thambi in February who we hope will be our new Oncologist moving forward.  We think he will be good. 

[Family Stuff paragraphs] Did anyone say Henry is reading?!? Henry is reading! It’s really cool. Lukas watches his big brother like a hawk and loves to stay close to him. We love seeing them together on the floor. Usually playing side by side with trucks. Also, Henry is riding a bicycle (slightly still too big for him, but he has training wheels) and getting better at all the pieces that need to fit together to make a bike go where you want it to go. 

[Cancer Stuff paragraphs] I want to mention an old friend of mine, Jessica Bernstein, who has also been battling cancer, longer than me, and is facing a recurrence right now too. She was my first call when I got diagnosed with cancer in 2019. Along with being an old treasured friend from my VPIRG** days in Vermont, she has been a light of balance and measured thinking in my life. I want to quote something she recently wrote in her cancer blog: 

“Rather than saying that I have an incurable cancer, I've decided to consider this a chronic condition, which needs ongoing monitoring and management. I have all kinds of things working in my favor: advanced diagnostic technology which is able to detect recurrences very early on; a vigilant team of skilled medical watchdogs, keeping a careful eye on me and ready to spring into action at the slightest sign of trouble; and an apparently robust immune system which is working to defend me even before I'm aware there's a battle going on.”

Smart lady. And thinking I will be emulating. Thank god for old friends. And all of the rest of our friends out there who are following our story and rooting for us! It matters to us. Thank you. 

Take care of yourselves everyone! 

* Pardon me, but I am super nostalgic for O.G. hip hop from 80s and 90s right now (at least the stuff I was listening to): Public Enemy; Erik B & Rakim; KRS-1 and Boogie Down Productions; Del the Funky Homosapien, Ice Cube. Yeah. 

** It was one of my old bosses, Daniel Barry, from VPIRG (yes, over 30 years ago, and a guy I would run into on the sidewalks of DC every couple years) whose donation brought the GoFundMe goal over the top in 2019. Working there in the late 80s was not only a formative time for me, but also connected me to people I still love today. Yeah, more nostalgia. :) 

2/6/21 

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THIS COULD BE SO FUN! *

Hello everyone, a quick update on new treatment for the new ...thing. We have decided (pretty easily) on a clinical trial at NIH for immunotherapy (Opdivo drug). Unlike chemo, radiation, or surgery, immunotherapy has almost universal reaction as being a positive step. Hopefully not as hard on the body as that other stuff, basically amping up my immune system to do battle on my behalf. It’s an 18 month process and we have been told I shouldn’t see much change in the first few months. (No, there aren’t any stats on the effectiveness of the treatment, because it’s new(ish), and ongoing.) I’ll be monitored for changes and we can always leave the trial for one of the other options previously mentioned if things aren’t going the way we need them to.  I’ll start my first infusion Thursday, January 21. We are also adding a new oncologist to my team, Dr. Byram Ozer, who comes out of Johns Hopkins and is highly recommended at NIH. 

Family news? Henry is reading now. He’s actually been reading words for awhile now, but we were originally suspicious he had just memorized words from books we read a lot. Nope, it’s clear he’s sounding out words and it’s really cool to watch him do it. So proud!  :) And Lukas has some new teeth and is starting to say a few words and eat with a spoon.  :)

* The title of this post is from a catchy song from Butterfly Boucher that’s been in my head lately. Play it and I challenge you not to want to dance along. ...Why not? The connection in my head is that with immunotherapy -which probably won’t be a walk in the park and certainly has side effects- should be way easier than spine surgery or radiation.

This could be so fun I might just like it I might just love it I might get busy I might get lonely I just don't know yet Can't wait to find out...

Stay well and healthy everyone!

1/18/21

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End of the year family: Henry’s 4th birthday (Lukas also turned one); Christmas tree hunting; visiting Santa (with social distancing); and the magic of Christmas morning. Stay safe --and Happy New Year everyone!

(12/27/20)

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Family visits and Halloween. 

We took a trip to South Carolina to see family, and had other family come to Maryland for a visit on Halloween weekend. We had Henry do Halloween trick or treating door to door -in the apartment, which he seemed ok with.

(11/8/2020)

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Fall 2020.

(10/5/2020)

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Canada Day, July 1, 2020! (We have family up there.) 

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Todd Tackles Cancer Updates

Hi all, if you want to continue to follow Todd’s health and/or our family story, just bookmark this page. It’s an old site I never used much, but it can suffice for our purposes. 

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Almost Home and Walking!

Just a quick update. Today is my ninth day of radiation of ten, and then tomorrow I get to go home and be with Inga, Henry and Lukas again! I have missed them so much and can't wait to hold my boys again! (Inga has been able to visit several times while I'm here, but the hospital doesn't allow children.)

Also, my left leg continues to get stronger and my morning physical therapy today had me walking down the hall with a cane. No walker. I still tire easily, but I'm thinking maybe I'lll be walking just on my own with no physical aid as soon as the Fourth of July. That's the goal in my head right now anyway.

All of this has truly been a remarkable recovery and we are all very happy and grateful for it.

(6/7/21)

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May Was A Difficult Month

MORE CANCER DRAMA

The second tumor from the April surgery, while we waited to get on the clinical trial (scheduled for May 31st), grew back aggressively, to the point it disabled my left leg. Completely. In a matter of weeks, I went from walking, to using a cane, to using a walker. When my right leg started pounding with pain one night and proceeded to buckle the next morning, we knew we could no longer keep waiting to get on the clinical trial.

I don't have to tell any of you, these kinds of events are scary, stressful, and full of worry about the future. There was plenty of discussion about me landing in a wheelchair.

RADIATION

Our NIH Medical Team changed direction and set me up for new radiation treatments at Germantown Holy Cross Hospital (where I am writing this now) with the goal of stopping -or stabilizing- my downhill trajectory. I'm four treatments in and have six more to go.

RESULTS

Initial results have been extraordinary: within two days of radiation my left leg was responding and I found I could move it again. This was our least expected outcome. The absolute JOY of this discovery can not be over-stated! Today I still use a walker, but can stand on both legs with some strength, and am getting physical therapy, on the path to recovery, and to walking again.

FAMILY

I can't wait to go home and see the wife and kids again! As it is now, I'll go home on June 8th, and will have been away for over two weeks, facetiming when we can. Inga has been able to visit me, but not the kids (hospital policy). I don't know how she handles everything. This has been a very difficult time, with Inga carrying, once again, all the work to keep a family going. I don't know what we would do without her.

WHAT'S NEXT

As things stand now, I am still eligible to get on the Clinical Trial we had been waiting for, which will now start at the end of June. The NIH Medical Team still believes this is our next best course for keeping this cancer at bay, and we trust them.

BIG PICTURE

Looking back: 2021, so far, has been playing defense against new tumors. I like to think of this radiation now, and the coming clinical trial as the pivot point where we finally get to go on offense against the cancer. In my head this clinical trial will keep it at bay for a few years until there is a better medicine to continue to tackle it and keep me -and our family- safe from anything except living our lives focused on family, not disease.

Our thinking this last week has gone from some pretty dark thoughts to hope for the future again. Thank god.

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Happy 2023!

CURRENT NEWS

Hello everyone! We hope that you had wonderful holidays and are starting off on a happy 2023.

As most of you probably know, I am in hospice. But a number of you don't seem to know what "hospice" means; I am not in a facility, I am home in our apartment with the family. I spend my days in an adjustable hospital bed. Hospice Doctors, Nurses, and staff come to our apartment during the week. The person I see the most is a gentleman named Emmanuel who washes my hair and keeps me clean. He is from Ghana and we talked alot about the world cup. Great guy.

If you don't know, I am quite diminished physically. I have lost control of both my arms. This means I am essentially a talking head, but still in good spirits. Inga feeds me, and I have been able to find various people to scratch the itches on my cheeks. In fact, my good friend Bryan (who is rather handsome) is typing up this post for me.

VISITS

We have been blessed with all kinds of friends and family visits.

Tamara, Putri, Novalina, and Amy - all former colleagues and friends.

Old, old Vermont friend Jessica and Sister and Brother Shelia and Mahesh, my earliest friends in DC.

Nolan, former colleague and friend. My nephews Michael and Erik. And my old, old friend Cameron who flew in from England.

WHAT COMES AFTER

Nobody knows when I will pass - could be January, could be the Spring, hard to say. There has been a lot of discussion about what comes after. There will be a headstone, a funeral, and a memorial in Maryland. I will probably be buried in Olney. It will be a green burial, meaning no formaldehyde and a pine box.

Our nephews Michael and Erik are setting up a 529 for our boys. For those of you who don't know what a 529 is, its an educational fund for Henry and Lukas' future. That information as well as funeral dates and times will be posted here and other venues. I am sure word will get out.

We have been amazed at all the love and support we have gotten during these tough times. We want to thank you all for the love and for being part of our lives. And remember, I am still alive so you can still say hi in any way you want to.

We will continue to update you as we can, and wish you all a wonderful, safe 2023 full of love.

(January 4, 2023)

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Meeting the Big Boss

Greetings everyone! Happy February!

[Just a quick warning: this post is mainly about recent Dr. stuff, but you can skip all that if you want and go for the pictures at the bottom.]

OK, so health-wise, two things are going on with me right now: 1) the clinical trial; and 2) the semi-recent surge in pretty bad pain in my abdomen. 

Let’s talk quickly about #1, the clinical trial.  It’s not super interesting, and we think that’s good. It means I don’t really have side effects popping up. And since we don’t expect results for months, it’s all about keeping an eye on things. To wit: I’m doing fine. 

#2, the abdominal pain is an ongoing fix. We went to a General Surgeon and he said “it’s not a hernia, it’s likely neuropathic-generated pain from your nerves” We came away from that feeling it was bad news, because a hernia we could repair, but how do you repair nerve damage? NIH has a “Pain Clinic” set up for me this coming Thursday. And I’ve been given a prescription that has been lowering the pain. 

Thereafter I had my clinical appointment which turned out to be with the Chief Director of NIH’s Neuro-Oncology branch, Dr. Gilbert. The nurse who took my vitals prior to my clinic called him “The Big Boss.” 

Dr. Gilbert was charming and after telling me a Dad joke involving Koala’s he  informed me there was no reason to put up with this nerve pain, and that I could safely triple my current pain med dosage to get it under control. 

He agreed the pain is neuropathic, from nerves growing back and further explained that there was an end to the pain. This news was huge: I can take a pill (well, a lot of pills) that will calm the abdominal pain. ALSO: nerves grow back at about a millimeter per month, so hypothetically the pain should resolve in 12-18 months. I can totally do that. So we were happy to hear these words.    

Big Picture: the abdominal pain should reduce or stop in another year/year and  a half, and there is medication that can help me while the nerves grow back. 

Inga and the kids are good. Wait a second, NO they’re not...! They’re amazing and wonderful and I love them. Stay healthy and safe everyone! 

(2/23/21)

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