Dickberry Telethon

I’ve been  a little uncomfortable as I planned for this latest post.

I contacted a bunch of famous hosts hoping to take the burden off of me – Jerry Lewis, Richard Dawson, Bob Hope, Alec Baldwin, Steve Martin, Billy Crystal, and Bob Barker. Oddly, half didn’t get back to me and others responded with, “Mr. Crystal requests that you remove yourself from his property.” So, I’ll go it alone.

As you know, Jen and I have spent the summer in Bethesda, MD,  at NIH for my allogeneic transplant. My progress has gone very well. It is too soon to really know if this transplant will be successful or not. But all signs are looking positive. I am currently riding the wave of symptom management (GVH of the gut and skin, high glucose levels, steroid withdrawal, treating minor infections, drugs to prevent infections). Every day we go back to NIH for changes and check-ups.

This summer away from Los Angeles has been long and difficult. Jen had to take a leave of absence from work. We have been 100% dedicated to my health. Life is on hold.

Although the expenses are manageable, we have had to balance a life back in Los Angeles and a life here. In addition, I will be coming back forth to NIH for many months and years to come on a regular basis. My outpatient treatment will take place at UCLA – weekly blood draws and check-ups and emergency services. Recovering from allo transplant – especially when you live far away from your main treatment center – adds up.

With this in mind, we decided to reach out to all the new friends and old friends, our supporters and our fans, and ask for a little bit of help.

The National Foundation for Transplants (NFT) runs a service for bone marrow transplant patients which provides a site for donations. The best part of the service is that they keep the money and only disperse it to us for costs related to medical expenses. We don’t get blank checks – they regulate the dispersement. Their guidelines are pretty strict and it keeps the patients removed from the actual funds – no spending the money on cars, booze, or women. Or in our case, cameras, fantasy football, and toys for our friend’s dogs.

We send in receipts and documentation and the money goes to expenses directly related to the transplant process – medicines, insurance premiums, tests, travel expenses related to medical care, etc. The money will forever be available to me as the effects of the transplant will always impact my life. But, if/when I don’t use the funds anymore, they get disbursed to other patients in the registry – your donation never goes to waste.

All of you have been extremely kind, supportive, loving and caring over the past 3+ years. If you read my blog from the beginning, you can  get an excellent sense of a patient’s journey as they ride the wave from optimism and hopefulness, through the many setbacks, the pain and discomforts, the heightened appreciation of good times, the resignation and the fight.

I continue to fight. Every day. Every minute. Just a few months ago I was told that I was basically out of options. My transplant and the care at NIH have given me a 2nd (3rd? 4th?) opportunity to live a life that isn’t dictated by doctor’s appointments and medical treatments.

I consider myself extremely fortunate.

But I also must face the reality that this process has taken a huge toll on us – physically, emotionally, financially.

Jen and I deeply appreciate your continued support and love. All of you are an important part of my recovery. I’ll never know how to adequately express my gratitude. Even in the darkest black, love does shine through.

(Oooh! Gag!)

If you can…if you can afford…and if you’re looking for a way to show your support and contribute to my recovery – please follow this link and consider a tax deductible donation to the medical and travel expenses related to my care and my transplant.

http://patients.transplants.org/faf/donorReg/donorPledge.asp?ievent=485635&lis=1&supId=365352501&patientPID=16014

And thank you very, very much. I am forever grateful.

Stephen and Jen

Register for the bone marrow registry

You could save the life of a little boy, a mother who wants to spend more time with her kids, a father who supports his family, a teenager with their whole lives ahead of them, or a senior with extraordinary tenacity.

It’s painless for the donor. And it is important.

National Marrow Donor Program

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.

Day +9*

*I can’t believe it has been 3 years and 2 months and I’m still writing this blog. Let alone that the days of my life have been restarted not once, but twice. So here I am again at +9 days after my transplant. Sigh.

The chemo was mild, the transplant was uneventful and both mine and Jen’s birthdays whipped past us as we were largely cooped up in my hospital room.

After all the different (and difficult) protocols that I’ve been through, it was hard to believe the doctors when they told me how mild this treatment would be. But they were right. Except for some stomach issues and testing for viruses and bacteria (all negative), I’ve been a perfect patient. I never broke a fever. My ANC count never dropped below 1, so I never truly got neutropenic. I spent a lot of time out of bed and wandering around NIH.

The care here has been second to none. They don’t burden the patient with a lot of unnecessary restrictions and try to give them as much independence as possible. I’ve been able to eat what I want (within the common sense guidelines of  being post-transplant). I’ve been able to leave my room and even go outside for walks and some fresh air. Yes, I spent a lot of the time snoozing in my room or just resting. But staying in good shape enough to get up and go out has been extremely beneficial.

The doctors and nurses listen to every complaint and follow up very quickly. Pain in the back – walk yourself down to x-ray. Runny nose – let’s take a nasal wash and check for viruses. Everything happens extremely quickly and everyone is in the loop. I very rarely had to explain my story.

NIH also provides “whole body care” which includes a variety of supportive therapies. Therapy dogs, acupuncture, massage. A library. Musicians play every day in the main atrium. As a patient, you really expect to leave here better than when you came in.

As my brother succinctly put it: “When you put aside the insurance companies and lawyers, you can get on with the business of healing people.” And that’s exactly how it feels here.

My next steps are baby steps. Once I’m released, I have to return to the hospital every day for blood tests. I’m getting blood and platelet infusions as needed. Although I’m not a ‘boy in a bubble’, I have to take many precautions against catching a cold or getting sick. Masks and gloves when in crowded public places. Hand washing like I’ve never hand washed before. If I spike a fever above 100, I’m back in the hospital. And there’s always risks of Picc line infections or CMV or other nasty bugs that lurk inside me.

Then there is the GVHD (graft v. host disease). The sun is my enemy – it can really aggravate GVHD. I have to wear long pants, long sleeves, hat and sunscreen in the sun. I’m closely watched for any signs of GVHD so they can get a grip on it before it gets too bad.

It’s all do-able. And I’m in good shape. The goal is to stay this way.

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.

Bendamustine

After seeing how much traffic I got from my post yesterday, I realized that it was kind of unfair for me not to write at least a quick update on my treatment.

I just completed my 2nd round of Bendamustine chemotherapy at City of Hope. According to my last PET scan in January, I still have some active lymph nodes in my chest that need to be knocked down or eliminated before I can get into transplant. We are hoping the Bendy does the trick. If it isn’t working or not working enough, I still have a few other chemo options to try to get my disease as close to remission as possible. The other chemo regimens are harsher and more toxic than the Bendy, which is why we have been avoiding them. But they are readily available.

About a month ago the lower 2/3 of my right lung collapsed. Previous scans and x-rays showed that the lymph nodes were putting pressure on my lower bronchial tubes, but the doctors didn’t seem too concerned about it. I was having breathing problems for awhile (coughing, wheezing, shortness of breath), and the hope was that my chemo treatments would reduce the lymph nodes, which would relieve the pressure on my bronchial tubes, which would solve the breathing problems.

Ask me again why the doctors didn’t seem too worried about it? Well, there was really nothing that could be done and we had to see how the I dealt with the Bendamustine treatment.

Unfortunately, after my first round of Bendy in the beginning of March, there was some kind of inflammation/interaction/mucus build-up/complication and my lower lung got blocked and collapsed. I spent a few days in the hospital getting worked over and they took a look. But, at this stage, there is nothing the pulmonary doctors can do to get my lung re-opened.

The blockage is being caused by enlarged lymph nodes -> the chemo is supposed to reduce the size of the lymph nodes -> which will hopefully open up my airway.

That’s the plan. I’ve got another PET scan scheduled in a couple of weeks to see how things are progressing. And probably another bronchoscopy after that to take a look in my airways and see how things are holding up.

I mentioned yesterday that I’ve been pretty angry and frustrated… Without going into details, spending a week in the hospital and having my mobility limited due to my collapsed lung has taken a toll on me. And then add a shitty weekend of chemo on top of it all and that makes Stephen a frustrated boy. The past couple of days, I’ve been coming out of my chemo sickness but my shortness of breath and fatigue keep me pretty limited. I also have a constant and ridiculously annoying cough at all times.

So, I’m laying low. Conserving my energy. And holding out for the next round of scans and decisions.

 

Life, Interrupted

I’ve been too angry and frustrated to post on this blog in the past couple of months. But there are other voices out there telling their story.

Click through to learn about Saleika Jaouad’s stem cell journey. A 23 year old woman with leukemia, she is posting weekly on the NYTimes Well blog under the title of “Life, Interrupted.” I admire her bravery for sharing her story. I worry about her ability to sustain and continue to give when she will need so much support during her transplant.

If you come to this blog to learn more about what I’m going through, all you have to do is listen to the stories of my fellow cancer warriors.

I applaud and salute her.

http://well.blogs.nytimes.com/author/suleika-jaouad/

Post Adcetris/Post Everolimus/Pre-SomethingElse

One step forward. Two steps back. Waiting. Waiting. A giant leap. A stumble here. Collapsing there. Getting back up. Moving forward.

Every new scan and every new treatment brings with it a mix of excitement, expectation, exasperation and frustration. And this week is no different.

My latest PET scan shows stable disease. My hot spots are about the same size and show about the same activity. I think. See, because of a dispute between Blue Shield and UCLA, I had to get my PET done at a different hospital. So, I had to get my doctor at City of Hope to take a look at my scan. And my doctor at UCLA doesn’t completely agree with my City of Hope doctor about his opinion of what to do next. With all of this in mind, we are meeting with Dr. Chen at City of Hope this Friday.

My current situation shapes up like this: Stable disease isn’t enough to get me into transplant. They want to see reduced disease. So I need more treatment.

I’ve been off any kind of treatment for about 3 weeks – I stopped the Everolimus because it was taking a toll on my platelet counts. And in the past two weeks, my platelets have been rising on their own. Last week they were as high as 55! (Normal platelet counts are around 140) My bone marrow biopsy doesn’t indicate any specific causes of the thrombocytopenia. It could just be bone marrow fatigue or side effects from the chemo. Hopefully, my platelets will continue to rise. The thrombocytopenia complicates matters because a low platelet count limits the amount of toxicity and treatment I can take.

Also, my bone marrow biopsy doesn’t show any signs of cancer – which is a very good sign.

However, my most troublesome symptom right now is my nagging cough. It could be a lymph node pressing against my airway. My x-rays, PET scan and check-ups don’t show any signs of pneumonia or infection. I’m taking some prednisone which seems to be keeping things in control – but I’m worried that the cough is a sign of some deeper problems lurking in the background.

The current plan is to get reduction in my disease while avoiding high levels of toxicity. The better shape I’m in heading into my allo transplant, the better my overall condition will be in the end.

My treatment choices seem to be:

• Bendamustine – a chemo that can be pretty harsh but shows promise in treating Hodgkin’s Disease
• Revlimid/Lenalidomide – I’m not sure how this drug works, but it is used to treat multiple myeloma and has shown promise for Hodgkins.
• Rituximab – Is used along with other therapies to target the B-cells that have CD-20 proteins
• ICE chemo – This is my “Kamikaze Treatment” that I’m keeping in my back pocket. ICE is a standard chemo for Hodgkins that I haven’t tried yet. All signs point to it working to put me in remission. But it has very, very high toxicity levels. If my disease goes into mega-drive, then I will consider ICE. But I’m avoiding it for now.

UCLA is leaning towards Revlimid/Rituximab. COH is leaning towards Bendamustine.

Most evenings, I lean towards a cold beer and a movie.

Are you starting to understand the whole “two steps forward/one step back” situation?

I am a work in progress. It is an extremely frustrating process punctuated by periods of fear. However, life goes on. I’m embracing my good days, resting on my bad days, and continuing to work towards the future.

For this post, I’ll let someone else take over the funny stuff.

Introducing: Woody Roseland and “Shit Cancer Patients Say”

Heroes pt. 2

With the recent uproar about the Susan G. Komen for the Cure Foundation cutting off funding for Planned Parenthood, I’d thought I’d share a couple of links.

Firstly, according to the Foundation, they cut off funding to Planned Parenthood because PP was under investigation. If that were true, they would also have cut off funding to Penn State and many other institutions under investigation.

http://www.washingtonmonthly.com/college_guide/blog/susan_g_komen_and_penn_state.php

http://jezebel.com/5881802/an-accounting-of-komens-staggering-financial-hypocrisy

More importantly, you should take the time to watch this brave, brave woman’s video demonstrating why health care issues shouldn’t be based on politics or religion – but humanism. Linda from Vegas is a hero in my book.

She’s brave enough to tell her story. Are you brave enough to listen to what cancer is and is not?

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…”