Tom passed away just after 5:00 PM today.
I still can’t believe it’s come to this. About a week and a half ago, Tom started to get very sick again. His lungs started to get worse, and he got very delirious. We sang to him, held his hands, and assured him there was no evil plot or virus out to destroy him and our phones. It wasn’t enough. His breathing and oxygenation got worse, and he needed to be re-intubated. I convinced myself it would be temporary — a couple days at the most — because his immune system was just returning and he’d be able to fight whatever was in his lungs and come back to start another round of chemo in no time.
This was not to be the case. His lungs continued to worsen, and the doctors started explaining that Tom had ARDS, and they were doing everything they could but Tom may never heal. I still didn’t really listen. I knew Tom could pull it together in time. They put him in the Rotoprone bed which allowed him access to more viable tissue in his lungs. It immediately improved his oxygenation, but still he couldn’t find his way back to us. Dr. Chen, his oncologist, explained to me yesterday that his cancer, though beaten into remission now, would likely come back in a manner of weeks. It was a dangerous, aggressive, take-no-prisoners kind of cancer that wouldn’t give Tom a break long enough to heal. There was no way he would handle another round of chemo, and no way he would breathe on his own again. Out of compassion, the doctor said, we needed to start thinking what Tom would want. Would he want to suffer, knowing his cancer would return before he could wake up and live his life again?
Our family gathered and discussed over the long weekend hours. Tom would be in pain if we weren’t giving him truckloads of narcotics. Anytime he woke up, he would face the terror of being unable to speak, see, or move in the Rotoprone, not to mention the delirium from the Versed. His lungs would stop working if we took him off the bed, and he wouldn’t heal in time to do more chemo, so the cancer would be free to come back to start its torture all over again. We decided Tom would side with logic and reason, and see that he had met his match with this awful lymphoma. He would be sad and scared to die, but would not want to suffer if he knew he had lost his fight.
We thought we’d try to hold off for a day and let everyone come say goodbye. But the doctor wisely asked… do you do this for Tom, or for yourselves? And we knew it was us who wanted the extra hours with him, and that Tom was suffering and we needed to stop it. Our family and legions of caretakers assembled and we all said goodbye… and the doctor pulled out his tube around 5:00 PM. The nurses, respiratory therapist, and doctor all helped us surround Tom and let him go. I can’t tell you how amazing the staff in Virginia Mason’s CCU were. Our nurse Sally actually came and rubbed my back and lifted my hair away from my face so that I could continue to just hang onto Tom’s hand for dear life. He passed very quickly, never even taking a breath after they turned the ventilator off.
This is so hard. It’s so wrong. Tom was a million wonderful things to all of us. He deserved to stay here and keep doing amazing things. I hope he continues to inspire and motivate each of us to keep being better people. Tom wasn’t really religious, but he believed in the goodness of humanity and the existence of something greater that made everything work. I am not religious either, but I like to think that Tom is somewhere… no, everywhere, soaking all the knowledge of the universe right up, and loving it. Learning and understanding things was one of his passions, and loving all of us was the rest of it.
Please join me for a vaguely Irish-style wake in Tom’s honor this Friday night, April 22, 8:00 PM, at the Rat and Raven in the University District of Seattle, where we can raise a glass and say Slainte! and tell tales of the great man we knew.
I also invite you to Tom’s memorial service which will be Saturday, April 23, in the afternoon… details pending.
This is going to take a long time to write, but that’s because it’s Tom at the keyboard again. Remember when you first learned to write your name, hands all-wobbly and un-sure? Yeah, It’s like that.
I’m happy to to be able to report that the chemothererapy (hyper-CVAD) that we launched is having the kind of effects we were hoping to see. Namely three things:
- My throat is incredibly sore
- I’m spiking short-term fevers left and right
- The cancer cells are going away!
They’ve been giving me just-about daily blood and platelet transfusions to replace the ones that I’m not able to self-sustain. If you’re eligible, please get out to the Puget Sound Blood Center or your own local blood bank. They are hungry little boys starving for those extra amounts you don’t need! And now I must rest.
I am happy to say Tom is doing wonderfully, dear friends.
They were able to extubate (take him off the ventilator) a few days ago, and he’s been doing just fine with a little oxygen from a nasal cannula. He started speaking the moment they took the tube out: “We need to have a discussion. I need to come to an understanding. Why have you been withholding ice cream?” It seems his first recollections of the previous 8 days were just a vague awareness that he was trying to ask for ice cream and we were ignoring him. He has later mentioned feeling some terror, and suspecting we were trying to kill him… and how grateful he was to get oriented and discover the opposite was true. I don’t think he remembers the tube itself, or the circumstances that led him to critical care in the first place. Fine by me if he never does…
Tom also instantly started expressing how grateful he was for the support from everyone when he heard how much he’s been through. That’s him alright; facing a scary medical situation and finding cause to be thankful. Over the past few days I’ve been filling him in on all that’s happened, and it’s understandingly a bit overwhelming right now. He is touched by the messages people have shared and the reports of prayers and bone marrow donation registrations in his honor. He’s also had a stream of visitors that leave him happy (and sleepy).
The first round of chemo has finished and neutropenia is here. No fevers, and everything remains in balance. He has some pain from the high volume flushing going on (getting rid of chemo toxins and edema from the cancer), and has been given a dilaudid drip with doses he controls. The nurses are falling in love with him and check in even when they’re not assigned to him. He has started eating (first order: chocolate ice cream; second order: root beer), sitting up in bed, and flexing some muscles. They’ll start neupogen shots tomorrow, which will speed up the arrival of his blessed little neutrophils and shorten this dark and dangerous watch.
I will be so happy to hand over the blog reigns and allow Tom to wax more eloquently than me. He is squeezing a little stress-ball to get his typing dexterity back ASAP. I sincerely hope you’ll be hearing from him next, and soon. Thank you all again for your support through this unimaginably difficult time. It’s hard to accept that our fight has just begun, considering how much we’ve been through so far, but after all this looms his transplant… at least we’ve learned that Tom’s tenacity is not to be underestimated!
Hello fans of Tom,
Tom’s doctor and oncologist sat me down this morning and explained that they want to start chemo today. He cannot survive on his current trajectory much longer. His lungs have healed somewhat, but he still cannot breathe without some ventilator support. He is also not absorbing as many platelets from his transfusions now, meaning that he is at a real risk for bleeding without being able to stop.
The doctors wanted to warn me that there is a “real possibility” that Tom will not survive chemo. When I asked what that would look like, they said that when he is neutropenic, which will be about 5 days after starting chemo, that he could get a serious infection, like sepsis, or start spontaneously bleeding. There is not much we can do – that we aren’t already doing – to make him more prepared for this fight. As I understand it, this doesn’t mean it’s a done deal… we just need to be prepared for how dangerous this is for him.
I love how supportive everyone has been, and if he wakes up enough in the days ahead I will read all the comments folks have been sending via email, Facebook, and on this blog. He knows he is loved, and I can only imagine how much that is helping him fight. Thank you all so, so much. Please continue to send good thoughts and prayers for the true battle that lies ahead. We’ve been waiting long enough – it’s time for this showdown!
This is Jana, Tom’s wife. I am taking over Tom’s blog for the time being (better to ask forgiveness than permission, my friends say).
We have lots of information to share; some may be a repeat for you, but hopefully more clear. The doctors sat down with the family yesterday and made sure we were all on the same page about Tom’s condition. Their report is below, along with changes and improvements in the last 24 hours:
1. Tom’s altered mental status: this is not a coma, because he is responding to vocal commands and other environmental stimulus. It’s hard to find a word for it, and it’s not clear what caused it. This is possibly a persisting problem following a seizure but we are not sure. We do know, based on the MRI and the lumbar puncture, that there is nothing structurally wrong with his brain, and no sign of infection or lymphoma in his spinal fluid. We are treating Tom with seizure medication and waiting for him to wake up. He is getting better day by day, which is so exciting. Yesterday he started squeezing his hands and moving his eyelids when asked. By this morning he has started nodding appropriately to some questions and keeping his eyes about half way open a little longer. He was not yet ready for their neuro tests this morning (“Squeeze my hand every time I say the letter ‘A’…”) but we’re very encouraged by the rate of his improvement!
2. Tom’s lungs: he has severe infiltrates in both lungs; a couple days ago they were completely white on the xray, meaning lots of hemorrhaging, but they are improving with the administration of high dose steroid. He is breathing with ventilator assistance (intubated). He initiates a breath, and determines how deep a breath he takes, and the ventilator gives him enough oxygen to keep his gas exchange stable. We can extubate (take him off the ventilator) when he’s breathing a more normal mixture of oxygen (right now he needs about 50% when normal air is about 20%) and of course when his is awake enough to want it to come out.
3. Lymphoma: he is in the “leukemic phase” of his cancer. Cells are breaking down left and right, but the steroid is helping him fight while his lungs and kidneys heal. It reduced his white cell count (meaning the cancer is being fought off) by quite a bit yesterday. This helps hold some ground until he is healthy enough to handle chemo. The blood test this morning showed a bit of jump again in tumor cells, which is strange given the high level of steroid he’s receiving, but we’re going to keep monitoring him and get more aggressive with treatment when he’s ready for the fight.
4. Heart: he has pericardial effusion, or water around his heart. Every day they do an echocardiogram and consistently the water level has been stable (actually, the most recent one showed a slight reduction). It hasn’t put any pressure on his heart or affected its function, which is fantastic. The effusion is a result of the lymphoma, so the steroid is likely helping, but it won’t probably go away until we start chemo.
5. Kidneys: the kidney failure he was originally admitted for is no longer a concern. He’s been getting plenty of fluid pushed through, and all the labs show creatinine and uric acid are nice and low.
6. Anemia: Tom is anemic due to the lymphoma and just being generally ill. He is getting transfusions as needed to help him out.
7. Other stuff: Tom is getting lots of antibiotics/antifungals/antivirals because for awhile we weren’t sure whether there were infections causing some of his confusion and sickness. We were worried about pneumonia and other infections in his lungs or his blood, and we know he had at least a UTI (TMI?), poor guy! They’re weaning him off the antibiotics as labs come back and look nice and clear. Tom’s blood pressure and vital signs have remained nice and stable, even during the horrible confusion Weds night when he might have had the seizure. He’s going to be here @ Virginia’s Critical Care unit for awhile, getting the attention he needs while he works on coming back to us. Meanwhile, SCCA is working on testing his brother Mike’s blood to see if he is a match for a future marrow donation – the allogeneic stem cell transplant that he will likely get after chemo.
HOW CAN YOU HELP?
We have gotten so many wonderful offers of help from family and friends, and I feel so lucky that Tom does not have to go through this alone. If you are wondering what you can do, here are some things:
1. This weekend 3/19 – 3/20: email firstname.lastname@example.org with any great pictures of Tom, cool facts you know about him that you think strangers would want to know, and share any well wishes you have for Tom himself. Our dear friend Lauren is making a couple posters to hang in his room – one for the nurses, doctors, and visitors to read about Tom, and one for Tom to read when he wakes up. Please contribute ASAP!
2. Consider being a blood, platelet, or especially marrow donor. Without a doubt it would be impossible for Tom to get through this without the infusions of blood and platelets that he’s been getting, and down the road a bit a marrow donation will actually be responsible for rescuing him back to health with a brand new immune system. Someone, be it Mike or some stranger out there, will be saving his life. It could be me or you! All we have to do is sign up on marrow.org and they will send a swab kit for the inside of your cheek. Only when you are a match for someone will they call you and ask if you want to donate. You are able to help a specific individual who needs you! I will be working to organize an official drive in Tom’s name soon, but please check it out on your own if you are interested.
3. If you are in the Seattle area, you are welcome to come visit. Familiar voices should be helpful to Tom as he starts to wake up. We want to keep overall guests in the room to a non-stressful level for him, but a couple at a time is just fine. Just come to Virginia Mason’s 7th floor, Critical Care unit, room 27. Feel free to call or email first if you want to check that it’s a good time.
Thanks for your prayers and positive thoughts – I, for one, find great comfort knowing how much support is out there willing him to get through this. Tom has so much to live for!!!
The news, friends, is not good.
The biopsy from back on my birthday shows significant infiltration of the bone marrow by the more aggressive of the two lymphomas that I had before. This pretty solidly explains why my blood counts have been so low; there isn’t any room for the bone marrow stem cells to operate properly. In fact, the pathologist reported that it was difficult to spot any stem cells in the sample at all!
My spleen is bigger, but not as big as last time. Some lymph nodes are bigger, but not as large or as widespread as last time.
In addition, there may be some water around my heart. I’ll be getting that checked out further to see how that will impact treatment.
Today is my day off from medical stuff. Tomorrow, a transfusion and an LP to make sure it hasn’t spread back into my brain. The next day: into the hospital for heavy duty chemo.
And when this new type of chemo wipes it away, I’ll probably be getting another stem-cell transplant. The scarier type this time.
I’ve had a variety of physical complaints for a long time, most of which I’d mentally marked as long-term side effects of the chemo and radiation and transplant and so on.
But recently I’ve started to have very little saliva most of the time. This had been accompanied by the also-not-mouthwatering red dots I was getting on my feet and legs, and the recurring strong pain I would get in my left ankle.
Last week I called my normal doctor and got an appointment for Thursday. On Wednesday I had my normal post-treatment 3-month blood tests. Normally I just an email notification when the results are available. I got a phone call instead. It was from the on-call Urgent Care doctor.
He’d seen my blood test results and said that I needed to hurry to an urgent care clinic to get a platelet transfusion. And to not get cut along the way. Apparently platelet counts are supposed to be at least ~120k per mm3 of blood. Mine were 5k.
That night I had a transfusion. The next day my normal doctor appointment was overridden by Dr Oncologist, who needed to perform a bone marrow biopsy. Then on Friday I got more blood. I was given Saturday off, went in Sunday for more tests, and now on Monday I am back getting more platelets.
Something is causing my blood to be real deficient, but we don’t have any data on what it is just yet. Hopefully we’ll have those bone marrow results soon!
It’s not a proper health update, but I wanted to share the video of my speech from Ignite Seattle 11 back in September. It was filmed, edited, and produced by professional-type people. And boy does it look good!
If you’ve got a spare five minutes, I highly recommend it!
Hello Ignite Seattle folks (and other new readers)! If you’re here to read more about the roller-coaster ride that has been my fight with lymphoma during the last year, I recommend looking at the “Archives” section along the right side of the page. That gives you quick access to each month’s entries.
Or, for the abridged version:
- the very beginning
- the first mention of lymphoma
- double lymphoma
- chemo begins
- so it, uh, spread to my brain
- preparing mentally for a stem-cell transplant
- home from the hospital, starting recovery
I really enjoyed giving an Ignite talk. Now I need to think of a good topic for my next one!
I’ll have a proper update on the last few months coming soon (plenty to talk about), but I wanted to make special mention of an event tonight for those in the Seattle area.
Ignite Seattle 11 is happening tonight, and yours truly will be among the speakers! The format is that each speaker has five minutes, and speaks along with 20 slides that automatically advance every 15 seconds. It’s a fun exercise in creative brevity.
Cancel whatever you’re doing and come check it out!