Tag Archives: Pet Scan

Day +60

I’ve been busy.

The past 60+ days have been a roller coaster ride, for sure. So much was changing every day, so much time spent back and forth to NIH, so much time spent in the hospital, so much time resting. I’m not sure how to sum it all up (and still be profound and funny).

The benchmarks for my treatment are day 30/60/100. On these days, I get PET/CT and we evaluate my progress. I had my day 60 scans this past week and my tumor is stable – no new growth. Which is great news. We can’t evaluate whether the tumor itself is much ‘colder’ or less active than it has been in the past – although the scan seems to indicate that it should be. At this stage, still so close to my transplant, the important thing is that I’ve been off chemo for months now and the tumor isn’t growing.

These scans serve as benchmarks and data points for my treatment. Days 30/60/100 are arbitrary days where they collect information about how I’m doing. The actual time frame for showing results and achieving remission could take months or years. However, my new immune system is definitely fired up and I feel extremely confident that its doing what it is supposed to be doing.

A big indicator is that I developed a moderate level of Graft vs. Host Disease on my skin and in my guts (GI tract). The GVHD put me in the hospital for 2 weeks as I had to stop eating completely, go on bunch of support drugs, and go under the careful watch of my NIH team. Currently, I’m on a treatment plan of very high dose steroids (140mg/day of Prednisone) and Tacrolimus as an immuno-suppressant. It is working well and things are improving. But I can’t stay on this regimen for too long as these drugs inhibit the ability of my new immune system to battle my cancer.

Basically, it is a balancing act between not letting the new immune system run wild and overrun me with GVHD but also letting it do its work. The process takes as long as it takes to get my meds at the best level for this to work.

In the meantime, I’ve spent 35 days as inpatient through the last 60 days, including transplant days and 2 stints as inpatient. I can’t even begin to describe all of the daily ups-and-downs that I went through during these times. Complications with my PICC line/catheter kept me going back and forth to Interventional Radiology. Blood pressure spikes and drops. Lots of scans when there was any sign of possible infections or complications (none so far!). IV drugs. Oral drugs. Anti-fungals. Anti-virals. Steroids. Stomach medicine. The list goes on.

But this isn’t a complaint – more like a big thank you.

The care at NIH is far superior to anything I could have imagined. Part of it is being under a clinical trial – the rules are strict and they keep a very close eye on you. But NIH is so much more than that. The doctors really care about my progress because they care about their research and making people better. They earn less than private doctors, but give more attention to the patient. I can text my oncologist with questions. He’s got my back when I have personal run-ins with other doctors or staff. He’s protective and caring. And this attitude spreads through the entire team – from the nurse practitioners through the administration to the floor nurses. I’m surrounded by amazing people – people who know my case, know me personally, and do everything they can to accommodate me while pushing for the best results possible.

There is no insurance. There is no waiting. I’ve seen the dentist, ophthalmologist, interventional radiology, nutritionist, bronchial specialists, infectious disease doctor  and more. My drug regimen keeps changing but we never have to pay for drugs. There is also a huge support system in place that provides acupuncture, massage and various therapies.

We are just blown away. I feel safe. We feel well taken care of. If I have to go inpatient, I know it is for the best reasons. And even if I’m bored or uncomfortable, if they tell me to stay inpatient then I listen. I’m not in any hurry to put myself at risk because I don’t want to be in the hospital – I let them make their evaluations and take their time.

This is a one way road. As it was explained to me – after an allo transplant, my baseline is changed forever. I may have to deal with chronic GVHD – sensitivity to the sun, dry eyes and mouth, skin rashes, or other things. It could pop up soon or it could be months away. I’m different inside. Forever.

But NIH will always follow me. I’m going to have to do some shuttling back and forth for awhile, but Bethesda is a nice town and I have a pretty good support system close by.

For now, I’m riding out the GVHD and getting my diet back on track. Treating the skin. Resting but I have enough freedom to make small trips out. The fatigue is impressive, to say the least. But I pace myself and I’m working to get my strength back.

This has been quite a journey. I was very sick when I arrived here while recovering from my IGEV chemo. Jen and I have crossed many bridges and there”s many more to come.

But I’ve got confidence and patience.

And I’ll be in touch.

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And so our young hero journeys to Bethesda…

Yesterday some deer walked right up the street. Monday, we went sailing on Chesapeake Bay. Last week I saw the White House. I’ve eaten 5 crab cakes in 2 weeks. I’m in Bethesda, Maryland.

As the Talking Heads say: “How did I get here?”

In March, the 2 rounds of Bendamustine didn’t work. And my lower right lung partially collapsed due to my lymphoma growing around the bronchial tubes and squeezing a couple of them closed. When my PET scan on April 17 showed increased disease, I wasn’t surprised. My doctors at City of Hope took it as a signal to get even more aggressive.

My docs decided on a round of IGEV – which I actually had in 2010 in preparation for my auto transplant. I had a pretty good response to it then – so, we were hoping that I’d have a good response to it now. Even though it was going to kick my ass.

And kick my ass it did.

IGEV is given inpatient over 5 days – which turned into 8 days due to some high liver counts. In addition, the chemo itself was pretty tough to take and requires a lot of antibiotics and a close watch on my counts.

Because City of Hope was my planned transplant hospital, I had my IGEV there (instead of UCLA). Without going into detail, my in-patient experience was really difficult and miserable. The doctors did not communicate well, there was  confusion with my medications, and the room was a tiny, dark hole tucked in the corner of the old hospital with a bathroom so small I couldn’t fit myself and my IV pole in it.

After 8 days of in-patient and some serious ups-and-downs, Jen and I convinced the weekend doctor that I could take better care of myself at home. And she agreed. You know your treatment is sub-par when the attending doctor agrees that you would get better treatment at home then the hospital. The #1 thing I had to do was rest and recover and that was the absolute last thing that was happening at COH. So, we packed up and went home.

The next 3 weeks are kind of a blur to me. I was laid up pretty bad from the IGEV. I had to give myself IV antibiotics at home. My liver counts went down, my blood counts went up. I was exhausted, couldn’t focus on anything, and basically spent a couple of weeks going from bed to couch and back again. Also, my dry cough returned with a fierce vengeance. Not only is my cough an alarming sign of Hodgkin’s on the rise or other complications, but it drives Jen absolutely insane and I find it very disheartening. Unless I was laying prone, I was coughing constantly – to the point where I would throw up. Basically, I was useless.

Some time during my delirious recovery from the IGEV, Jen kicked into action on researching a clinical trial that she had come across back in February. Put your thinking caps on, it’s time for a little science lesson:

In a traditional allogeneic transplant, the patient is given enough chemotherapy to basically wipe out their bone marrow completely and destroy their immune system (similar to what I went through in my autologous stem cell transplant). Then, the patient is infused with stem cells from a donor. Ideally, the donor is a sibling with a 10/10 human leukocyte antigen (HLA) match. These new stem cells imbue the patient with an all new immune system, which is supposed to fight the lymphoma.

However, along with the (hopefully) cancer fighting properties, the new immune system may also attack the patient’s body resulting in graft vs. host disease (GVHD). A little GVHD in the patient is a good sign. Too much GVHD can be disastrous as the new immune system can really screw up the patient. The better an HLA match, the lower risk of chronic GVHD. But these things can’t be predicted. Although doctors have gotten a lot better at controlling GVHD.

Allo transplant becomes a balancing act between immuno-suppressing the patient so that they don’t get too much GVHD while waiting for the new immune system to take hold and start fighting the cancer. During this time (which could last for many months), the cancer has an opportunity to grow since the patient is basically off of active treatments.

There are a few different variations on the allogeneic protocol and different hospitals take different approaches. Some hospitals give a lot of chemo and really wipe out the patient, which is the traditional allo protocol. Recently, research shows that less chemo is actually better for an allo patient and most hospitals pursue a reduced intensity level of chemo (RIC). A few hospitals promote ‘haplo’ transplants, which is a half-match, usually a parent. There are many arguments for the many different protocols and the truth is that the research is ongoing but information and data about allo transplants have come a long way in the past 10 years.

The question for the patient is: What protocol is the best for them?

When I was told the results of my April 17 PET scan at City of Hope, the oncologist told me that “it was bad.” Translation: I was headed in the wrong direction for a successful allo transplant and, more specifically, to beat Hodgkin’s at all. It was pretty frustrating and sad. And COH could only offer me more IGEV and a traditional approach to an allo transplant.

Which brings us back to Jen’s discovery of a clinical trial at the National Institutes for Health (NIH) in Bethesda, Maryland: “Donor Stem Cell Transplant With No or Low-Intensity Chemotherapy Using Sirolimus and Treated Immune Cells to Treat Blood and Lymph Cancers”

For about the past 10 years, NIH has been using very, very low dose chemotherapy on their patients accompanied by the support of a M-Tor inhibitor drug called Sirolimus. The theory goes something like:

  1. Don’t weaken the patient with excessive chemotherapy
  2. Use Th2 cells (immunity cells) grown in the lab with Sirolimus to better control GVHD
  3. Get the new immune system working quicker so the cancer doesn’t have time to grow

When Dr. Pinter-Brown at UCLA read the details of the NIH study, she strongly encouraged us to pursue it. Although I don’t have a lot of cancer compared to many, it is in a bad place and the window of opportunity between the transplant and the new immune system activating is worrisome for me. My right lung is already compromised and I don’t have a lot of room left in my chest for more tumor growth.

Looooong story short – Here we are.

We arrived in Bethesda on May 13. I was still in pretty bad shape post-IGEV and when I arrived I immediately needed 2 pints of red blood. But NIH is amazing and they are taking excellent care of us. No bullshit insurance companies to deal with – it is all government funded. No waiting for tests or appointments – everything is located in one building and their computer system keeps every doctor, nurse and technician up-to-date on my status. No bureaucracy of doctors, assistants, secretaries, administrators and all the other people that I had to go through to get my care – I have a direct line to my doctors and I see them regularly.

Most importantly of all, the doctors are confident that this is the best treatment option for me. They have an entirely different (and refreshing) approach to allogeneic transplants and patient care in general. The key is getting the new immune system in my body and active. When chemotherapy stops working for me, they want to get me off of it and stop the poisoning and weakening of my body. There’s no guarantee that the allo transplant will put me into permanent remission. I believe the statistics are the same for this protocol as any other for achieving remission. And Hodgkin’s Disease is particularly tricky to treat.  But, with my weakened bone marrow and increasing disease, an allo transplant is the best option for me no matter what. And this protocol isn’t going to make me as weak, sick and as vulnerable as traditional allo protocol.

NIH also believes in “whole patient care” – meaning I get to see whatever doctors I need to in a timely fashion as well as an entire team of pain and palliative care docs. Mental health, pain control, relaxation methods, additional therapies – it is all part of my protocol. No more doctors looking at me like I’m crazy if I mention nutrition or acupuncture as part of my recovery.

Today I had my 4th and final day of chemotherapy. I get the cyclophosphamide and fludarabine (as well as a Rapamune kicker on day -2) as an outpatient. The chemo regimen is so light that I’ll have very little side effects (some nausea and fatigue seems to be the norm). Due to all the chemo I’ve already been exposed to, the doctors told me that my immune system is already as weak as an HIV patient. My bone marrow is shot – time for a new immune system.

I go in the hospital this weekend expecting to have my transplant on Monday. After that, it is an estimated 9-14 day inpatient stay, depending on any complications that might arise. Then, I have to stay close to NIH for about the first 100 days as they continue to conduct tests, blood draws, scans and any other treatments that I might need to fight infections, viruses or complications.

Although the protocol keeps me in good shape, I will be severely immuno compromised for a long time. I’ll have the immune system of a baby (a very handsome and hairy baby) and I have to take the same precautions as when I had my auto transplant. It is expected that I’ll have infections and complications. As well as some GVHD to deal with. But my energy levels should be pretty good and hopefully I won’t be a ‘boy in a bubble’ all summer.

Ok…time to sum up this very long update.

The past 3 years have been difficult. The past 2 months have been extremely difficult. The past 2 weeks have been full of hope again. I’m looking forward to seeing what the next 100 days brings.

Heroes

Long time overdue update. My excuse is that I’ve been trying to live my life as a person who doesn’t maintain a blog about cancer. And so, sitting down to reflect on my trials and tribulations has become quite an effort for me. But I digress…

When last we left off, I was getting a couple of extra doses of SGN-35 (Adcetris) and waiting to see the results of an updated PET scan. How are the Duke Boys gonna get out of this one? (cue banjo music)

Will the General Lee land in the hospital? The infusion room? Or safely at home playing Playstation?

I had a clean PET in August. My PET in the beginning of October showed a couple of faint hotspots in my chest. My PET at the end of October showed the same couple of faint hotspots. The presence of any activity was enough for my doctors to postpone my allogeneic stem cell transplant and try to get me into complete remission.

My main tumor is inert. The activity looks like it is based in two lymph nodes in my chest. These lymph nodes are located near my right lung and somewhere near my spine. Hodgkin’s is already notoriously difficult to biopsy because of the mix of cells. And I’m definitely not going to let a surgeon crack me open to conduct a cancer easter-egg hunt in my chest. So we are moving ahead with the information we have.

For now, I’m on a drug called Everolimus (Affinitor or RAD001). It has been FDA approved for kidney and liver cancers as well as for those who have had transplants. It has shown promise in treating Hodgkin’s Lymphoma, but it is still in the trial phase. I’ve been taking it for over a month. The on/off pains I had in my chest went away. I don’t have any Hodgkin’s symptoms (itching, night sweats, cramps). And generally I feel really good. You wouldn’t even be able to tell that I had the big C by looking at me (unless I bitch you out for parking in a handicapped parking space without a permit…but that’s another story).

I do get fatigued in the middle of the day. So I nap a lot. And I developed some mouth sores last week which slowed me down for a couple of days. I use a rinse made up of water, baking soda, salt and hydrogen peroxide which seems to keep mouth problems in check. I highly recommend it for any cancer patient – but don’t tell the nurses that you are rinsing with hydrogen peroxide as they will freak out.

Also, Everolimus can cause serious problems with the lungs so the doctors keep a close eye on any cough or shortness of breath that might develop.

Everolimus also affects my platelet counts, which are already critically low after my auto transplant last year. A normal platelet count is between 150,000 – 400,000…I hover around 45,000. And while on Everolimus, it has dropped as low as 19,000 (which led me to get a transfusion). The doctors are keeping a close eye on it and I get blood tests every week.

Here’s where things get complicated. Or, to beat a bad analogy into the ground – here’s the part where Boss Hog has the banker locked in jail while Uncle Jessie needs his money to make a payment on the farm before Roscoe and Enos evict him. Or something like that.

Everyone agrees that an allogeneic stem cell transplant is the only procedure that has been proven to show consistent results in getting 10-30% of patients with relapsed Hodgkin’s into long term remission. And, with my brother being a 10/10 match, this is the procedure for me.

However, there are different schools of thought regarding when to have the transplant. For some, I should have the transplant as soon as possible, since we don’t want to give the cancer a chance to grow and I’ve already been through a lot of toxic treatments, chemo regimens, radiation and SGN-35. If the cancer spreads or grows, it could put me in a bad situation for my allo transplant. I’ll call this the “Act Now” plan.

On the flip side, there are definite drawbacks to having an allo transplant too soon. The patient should enter an allo transplant under the best possible circumstances – no active disease, some history of remission/disease control and not too soon after a failed auto. There are quite a few examples of failed allo transplants taking place after failed auto transplants. And it makes sense to be sure that the disease is under control before putting myself through all the difficulties of an allo transplant.

I have to consider that an allo transplant is rife with complications. The graft vs. host disease can get bad. The procedure itself is debilitating. The recovery period is difficult. The chance of getting pneumonia, virus or infection is quite high and can be catastrophic. The hospital food is going to suck.

For some, the allogeneic transplant is basically a last resort. Putting all my cards on the table. Going all-in. Playing my hand. Pis aller (as the French say).

And, to be honest, the vagueness of the hotspots in my chest followed by a clean PET scan in August makes me suspicious that the activity shown on the scans is active disease and not my lymph nodes reacting to the SGN. For one, I don’t have any Hodgkin’s symptoms. Also, the chest pain has gone away. And my main tumor is inert. Could I already be in remission? Possibly. But without a biopsy we have to move ahead with the information we have available – and that shows hotspots.

Jen Berry (aka Encyclopedia Berry, Girl Detective) has been doing a ton of research about my situation. She has been talking to other Hodgkin’s patients, researching clinical trials and considering 2nd opinions. Some new information has come to light.

1. I want to go in for my transplant under the best possible circumstances.

2. There is a lot of hope for treating Hodgkin’s Disease like a virus through the development of T-cells which attack the EBV virus present in some Hodgkin’s tumors. I’m not sure of the numbers and my grasp of the science is fuzzy – but Dr. Bollard and Dr. Heslop have made huge gains in early clinical trials at Baylor University. Unfortunately, my tumor is EBV negative so I do not qualify for Dr. Bollard’s current study. But they are also pursuing studies for EBV negative patients or patients who merely show EBV in the blood (not just the tumor). Consult ClinicalTrials.gov for more information. One day it may be possible that my body treats the Hodgkin’s like a virus and keeps the cancer under control on its own.

3. Among Hodgkin’s patients, there is a man…his name is whispered in the forums…he has attained almost mythical stature. They call him “Dr. O”. And, apparently, he is the guy to see if you’re a relapsed Hodgkin’s patient. We contacted Dr. O (also known as Dr. Owen O’Connor at Columbia) and he got back to us right away – a good sign. We are planning on traveling to NYC to see him in the next couple of months.

We are trying to make sure we are pursuing the best course of action for me to either beat this disease or find a path towards long-term disease control.

Most people are part of the 80% that get go into long-term remission after front-line ABVD treatment.

Some people have the perspective that Hodgkin’s Disease is something they can live with and maintain, like diabetes or HIV. They live their lives to the fullest extent they are able.

Every day, doctors and researchers are developing new plans of action, new drugs, new treatments to fight lymphomas and cancers. For many, it is a matter of hanging on until the magic bullet is found or a treatment works for them.

Which brings me back to the title of this blog: Heroes.

Some people still comment to me about my bravery, sense of humor or chutzpah through all of this. Which is kind and appreciated. I try to set a good example. I’m humble about it because I don’t feel special. I know I’ve been changed and affected by my experience, but I’d like to think that I’m still just me. Kind of a know-it-all. Kind of lazy. Kind of a nerd. Just a little more toxic inside than the usual person.

So who do I look up to? Who are my heroes?

First and foremost: my wife. If you’ve met her, if you’ve talked to her, if you’ve ever eaten her cooking, if you have only read her Facebook –  then you know she is a special woman and I’m lucky to have her by my side.

Friends and family. Thanks for keeping me sane. For checking in. For the distractions and support. For making me feel normal when life is abnormal. For football Sundays.

My doctors and those that get paid to care for me. Dr. Pinter-Brown. Dr. Chen. Dr. Eredat. Dr. Loh. Grace Cherry. Suzanne Levanas. Donna Pall. The nurses (so many nurses). Even my medical insurance and disability insurance representatives have supported me over the past two years – shout out to Lynn Goodenough and Sheryl Quarnstrom! My team. I honestly believe that they do it because they care, and that makes a huge difference.

And here’s where the line comes full circle – All the other Hodgkin’s patients.

It sounds ridiculous for me to acknowledge the strength I get from other patients when I am so flippant about my own role as someone who sometimes inspires others. I think this is part of what they mean by the Cancer Community. All of us poor, pathetic, nauseous, gassy, sometimes-bald patients looking for a cure, looking for answers, looking for comfort. We have nothing in common except for drugs, disease, radiation, stem cell transplants and cancer. Yet…

Jen is more in touch the larger world of Hodgkin’s patients than I am. I just don’t have it in me to read the Facebook posts or follow all the blogs. To try to avoid the sad stories while looking for the positive ones. Who is getting treated where and by whom? What’s the next big thing? Who qualifies and who doesn’t? I find it difficult enough to keep track of my own disease, let alone everyone else’s.

But recently it seems that Jen has tapped into a new community – people who are living their lives with Mr. Hodgkin’s. He’s more of an inconvenient roommate than an unwanted visitor. These are people who keep on keeping on. Not as the head of some kind of foundation or as a spokesperson. Just…people. Who happen to be statistical anomalies. Who feel compelled – like I do sometimes – to share their experiences and information with the greater community in the hopes that what they’ve been through can help someone else down the road.

Karin and Becca and Chris and Ethan and Ben and the rest.

I just went back and read some Facebook posts and looked at some other Lymphoma blogs. It only reinforces my feelings that I’m not special. That none of us are special. We are just people. Living lives with hopes, fears, dreams, compromises, gripes, laughter and tears.

Maybe we live life a little more raw then healthy people. I don’t know.

Let’s just say, this episode is “To be continued…”

Patient’s patience

I had another dose of SGN-35 (Adcetris) last week and I’m going to have another PET scan end of next week (or thereabouts).

I decided to not go through with an immediate biopsy because the chance of getting a useable sample was very low and I felt the risk and discomfort was too high. The biopsy would have resulted in:

  • Positive sample = more treatment
  • Negative sample = we still couldn’t be sure that the sample is truly negative because of the small sample size so it would still be inconclusive
  • Inconclusive sample = Inconclusive

With this in mind, my current course of action is to get another PET scan and see if the hotspots go away, stay the same or grow.

If my PET is clear, then it is onto my allo transplant.

Anything else and I’ll either definitely need to get a biopsy or I’ll have to get more chemo treatment to put me into complete remission.

The goal is still the same – allogeneic stem cell transplant.

But we now understand that going into the transplant as close to complete remission as possible is the best course of action. Even if it means more treatment. Even if it stresses us out.

The good news is that there still seem to be a number of chemotherapy treatment options to get me into remission.

One of the most promising options is a study being done at Baylor by Dr. Bollard. If my tumor shows signs of EBV (which is related to the T-cells and found in 50% of Hodgkin’s) then I might qualify for this treatment. We are getting blood and tumor samples tested now.

http://www.texaschildrens.org/carecenters/Cancer/perspectives/archives/spring06/Bollard.html

On a side note: I spent a few minutes this morning reading Hodgkin’s support group forums. I haven’t spent any time in the past looking at these websites as I know they are mostly filled with sad stories and people looking for comfort. Too many questions, not enough answers and too emotionally taxing for me. Jen takes on most/all of the research on herself – which means she also takes on the emotional burden of being aware of other people’s experiences.

However, after reading a few posts, I became even more inspired to keep fighting and develop a new plan – if I need one. Eat healthy. Stay active. Push for the most demanding treatments possible to knock this thing down so I can get into my allo transplant.

“History is written by the victors.” – attributed to Winston Churchill

Or, to put it another way:

Don’t let the highs get too high. Don’t let the lows get too low.

This is the advice I keep giving my friends and family.

If every piece of good news caused me to cry with joy…and if every piece of bad news caused me to cry with grief – I wouldn’t be able to cope as well as I do.

Exhibit A: This week, I was scheduled to get a Groshon catheter placed in my chest on Monday and then be admitted to the hospital on Tuesday. However, looming over all of this was my PET scan results from a week ago.

The scan showed some kind of small, vague PET activity in my chest. My oncologist ordered a CT scan the next day so the UCLA oncology team could take a closer look and see if this was something to be concerned about. They held their weekly meeting Monday morning and decided to review all of my PET/CT scans from this past summer in order to make a determination of whether to a) proceed with stem cell treatment or b) order a biopsy to try to figure out what these hotspots might be.

All of this adds up to no catheter and no treatment for me today.

Yes, this process is full of frustration and worry and anxiety and “two steps forward/one step back”. City of Hope believes that I should go into transplant immediately, regardless of the small activity. But UCLA wants to make sure I am in as complete remission as possible before beginning the process.

So what are my options?

Do I obstruct UCLA’s attempt to be thorough? Do I cry and worry and shut down? Do I continue to put one foot in front of the other, take a deep breath and practice patience? Do I turn to City of Hope and undergo my treatment there?

I was once told I have cancer. But, it was the “good kind” of cancer. Then I was told that the 80% effective treatment didn’t work for me. Then I was in remission. Then not. I suffered through 3 weeks trapped in a hospital room. I’ve had the chills so bad I thought my teeth would shatter. I’ve been poked and prodded, injected, poisoned, irradiated, hugged, cried over, prayed for, supported and insulted, knocked out, knocked down and picked up. I was present when two of my dearest friends got married to each other. And I was in the hospital when another two of my dearest friends got married. I’ve looked in the mirror and not recognized myself. I’ve apologized to my wife many times for being sick. I had a nervous breakdown. I’m pulling a 4.0 in grad school. I’ve laid my best friend to rest. I’ve held my friends’ newborn babies. I experienced loving kindness from a group of strangers like I never believed existed. Yesterday, a nurse gave me a hug and I cried.

What is the appropriate reaction when you are told that the life threatening procedure that might be your last chance at survival has been postponed?

For me – I went out to a lovely steak dinner with my wife and brother.

In all this, my brother donated his stem cells on Monday morning and filled up the bag in one session. Whenever I’m approved for the treatment, his stem cells are tagged, bagged and ready to go. One step forward.

He deserves a special shout-out. He handled the tests, physical, shots and pheresis procedure like a champion and I’m extremely grateful for his dedication, patience and perseverance. For a guy who is a bit scared of needles (and who isn’t?), he sure didn’t act like it. He never complained once. He took time away from his family and work to travel half-way around the world, eat hamburgers, watch some American TV and – oh yeah – give me the cells I need to stay alive. If anyone finds a Hallmark card for that, please let me know, because I don’t have the words.

My lifesaver

And a great dad

 

 

 

 

 

 

 

Any medical procedure – even a voluntary stem cell donation – causes a person to reflect upon their own mortality in some way. I hope he goes away from this experience appreciating the fragility of life a little more. And I hope he feels proud of what he’s done for me. It has been a joy to have him visit, to see his family every morning on Skype and to get to know my brother a little bit better.

For now, I’m off the SGN-35 and I’ll let you know as soon as I know what’s going on with me. This should just be a minor hiccup in the process of getting through an allogeneic stem cell treatment. But we shall see.

“The reward of suffering is experience.” – Aeschylus

Aeschylus was the founder of Greek tragedy. And he sounds like a real downer to have at a party.

People continue to tell me how brave I am and how much they admire my strength and how handsome and funny and humble I am (okay…not so much those last 3). I get a lot of “Looking at you, I’d never know”. And, especially, people want to know what you learn through the experience of having cancer.

I like Aeschylus’ quote. I think he sums it up nicely. You live, you learn. I think we spend a lot of our time not learning, not experiencing. We are busy. For me, right now, the world has gone from being slow and anxious while I’m in treatment, to flashing by as I rush to get school papers done or complete projects or run around doing errands. And soon, my world will shrink again to the size of a hospital room. And it will slow down to a crawl as I deal with my next transplant. There is little time in the real world for reflection. And health issues force us to slow down, re-prioritize and experience more.

So, what have I learned?

I have little tolerance for fools. I find people more frustrating than I used to. Although I try to have a deep respect for people, if something happens that causes me to lose that respect, I try to move on. I also fight more – I fight for my rights, for the rights of others. I fight for opportunities. I don’t take no for an answer, at least not on the first go-around. While, at the same time, I try to practice patience for the things I can’t control – traffic, PET scans, weather.

My memory is selective. I only have a vague recollection of my experiences the past 3 years…indeed, the past 35 years. There is something to be said for hanging on to the suffering, to the pain. It is a deep learning experience when you are going through it, but the mind tries to put that pain behind once it is time to move on. I find that both a relief and a disappointment. For all the pain and all the discomfort, there is something about the experience that I want to hold onto.

Recently, Jen and I went through a big lesson brought on by the generosity of our friends and associates. It is important to me that I share this lesson. For us, this has become an elephant in the room.

Exhibit A

A couple of weeks ago, Jen and I were handed a big surprise. Apparently, friends of ours organized a fund raising drive for us. They did this without asking and attempted to keep the whole thing anonymous. So, we were handed a letter, signed by Anonymous, that wished us well and supported us on our cancer journey. Attached to this letter was a check, also signed by Anonymous.

The generosity shown by this “Anonymous” group of people was shocking. And, to be honest, a little off-putting. Let me explain our side of this experience – and the lesson we have learned…

First and foremost, we are grateful. We have always tried to be grateful over the past few years. Whether it is a card in the mail, a gift certificate for food delivery, contributions to UCLA hospital in our name, donations to the DVD drive, rides to doctor’s appointments, lasagna delivered to our door – we have always been deeply, deeply grateful. Our friends and family have demonstrated depths of caring that we never thought we would witness. In times of crisis or hardship, the amount of support that can come from those close to you or those whom you hardly know is incredible. This generosity gives me hope and strength and inspiration.

Many, many people have made themselves available to give us help and support. We have been lucky (so far) and we haven’t needed too much in the way of outside assistance (other cancer patients aren’t so lucky). We have always tried to direct people’s goodwill towards places that serve the most good.

However, even those people who mean well, sometimes cause a little harm along with the good. People want to help – we would feel the same way if the situation were reversed. But people also need guidance. In their eagerness to be helpful or caring, they lose sight of the fact that they don’t truly understand what it is we are going through. I think all cancer patients (and pregnant women and AIDS patients and anybody not ‘normal’) share this feeling. It is part of the process of needing help, of being ‘different’ – instead of being the person who is providing the caring.

There is so much that I can no longer decide for myself. I am at the will of doctors and hospital schedules and PET scans and medicines. It is important to us that we keep control over certain aspects of our lives. One of these areas of control is maintaining our privacy and managing other people to suit our needs and our schedules.

So, we were definitely stunned when an Anonymous donation found its way into our lives.

Of course, we understand that this gift is meant with ‘good intentions’. Of course, we understand that people want to show their love and support for us. Of course, we are deeply grateful and honored that so many people in our lives have rallied together and gone above and beyond for us. Of course, we accept this gift in the nature it was intended – to help us in a time of need.

However, right now, we don’t need the money. We didn’t ask for it. We’re not even allowed to thank or acknowledge the people who generously gave it to us. And now we are responsible for it. This makes me uncomfortable.

We thought long and hard about what to do with the money. Although we are on solid footing now, we can’t predict the future.

It is important to me that I share with you our plan: We put it away in case a day comes when we do need the money. I may lose my health insurance. Medical bills may rise. My recovery from my stem cell transplant may prove more difficult than we expect. Who knows what will happen?

The money is in a separate fund. There it will sit until the day we either need it or we can pass it along to a worthy cause.

There are many, many cancer patients I know who aren’t as fortunate as us and I know they can benefit from the money. Those without insurance. Those who have lost their job. Those who cannot afford healthy food. Those who travel long distances to get the best care. Those who spend days, weeks, months away from their homes while they recover. Along with my burden, I like to think I carry a little of their burden with me as well. And, as much as you want to help me, I want to help others.

You may not see the elephant in the room. But it has been standing over my shoulder for a few weeks now.

Consider this blog post a reflection of our deepest, deepest gratitude for your generosity – to all of you. Those who donated to this cause or to any other. And to those of you who haven’t donated a thing, but continue to send us supportive comments or think about us once in awhile or pray/meditate on our behalf.

Thank you. Thank all of you for being our friends, family, audience and supporters.

In other, brilliant news – My latest PET scan is clean and I am green-lit for my allogeneic stem cell transplant. My brother has his flight booked (paid for, in part, by the Anonymous donation) and UCLA is working on scheduling and formalities. Tuesday I go in for my pre-screening tests (PFT, Echo, EKG, lab work). Hopefully, by the beginning of October, I will be locked away in a hospital room at UCLA, tubes in my arms, getting ready for the most challenging treatment yet.

Does anyone have any change for parking?

The Mission is Remission

Yo all.

Let’s start with big news first, shall we?

I found out on Friday that I’m in remission. I don’t have details – I meet with the doctor on Thursday to go over my scan. But this does mean that I’m right on course and we can move ahead with the stem cell treatment sooner rather than later. Let’s take a moment to say “HELL YEAH!” shall we?

I’ve got my 3rd chemo next week. Then my team and I will get ready for the stem cell process – first harvesting, then I go in hospital for BEAM chemo and finally reintroduce my stem cells. I’m hoping for mid-end of October to get all of this done.

The hardest part is yet to come. The stem cell process is going to be quite difficult – from the isolation for 3 weeks to the physical toll it will take on my body. Also, I will be immuno-deficient for some time afterward, which will put me at risk for catching disease and infection. Sounds like good times.

But one step at a time. I’ve been basking in the glow of my good news. It has been hugely motivating to know that all the pain I’ve been going through is worth it. A big shout out goes to my oncologist and her team for staying on top of all my side-effects – big and small – and keeping up with my blood work and general well being.

I also started grad school yesterday, which is also a big kick in the ass. The school is hugely supportive and I feel cool and comfortable beginning this process, even with such a daunting medical schedule in front of me. I’ll be Skyped in to classes that I will miss and my professors have put into place an excellent support system for me. Taking a class this semester is the best decision I could have made for myself – both in the short term and the long term.

I don’t know what else to say. What can I put in this blog to adequately describe how good I’m feeling these days? In remission. Life moving forward. I’ve got some fatigue and bone pain, but it is all manageable. So I’m enjoying the good days because there are bad days ahead.

I’m happy to share this good news with you. And I’m at a loss how to end such an awesome blog post.

So I give you Chewbacca on a giant squirrel fighting Nazi’s (courtesy of Deviantart’s gamefan84):