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.
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.
Posted in Uncategorized
Tagged allogeneic stem cell, Cancer, graft vs host disease, gvhd, Hodgkins Disease, Hodgkins Lymphoma, NIH, Pet Scan, Steroids
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.
Posted in Uncategorized
Tagged Bendamustine, Cancer, Chemotherapy, City of Hope, Hodgkins Disease, Hodgkins Lymphoma
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:
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…”
Posted in Uncategorized
Tagged Adcetris, allogeneic stem cell, autologous stem cell, Cancer, Chemotherapy, Hodgkins Disease, Hodgkins Lymphoma, Pet Scan, SGN-35, UCLA Medical
Below is a link to a short video about the team of doctors who run the Lymphoma Center at UCLA.
Dr. Pinter Brown is my oncologist.
I have also been seen by Dr. Eredat, Grace Cherry and others.
I walk these hallways all the time. I sit in those chairs. I have been the person in the room more times than I can count.
I am extremely grateful that this video was produced and I have a way of sharing some of my experience with all of you. Also, it gives a lot of insight into how UCLA treats lymphoma and how the entire process works.
Be well.
Posted in Uncategorized
Tagged Cancer, Chemotherapy, Hodgkins Disease, Hodgkins Lymphoma, UCLA Medical
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:
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:
Posted in Uncategorized
Tagged Adcetris, allogeneic stem cell, Cancer, Chemotherapy, Hodgkins Disease, Hodgkins Lymphoma, Pet Scan, SGN-35
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?
Posted in Uncategorized
Tagged allogeneic stem cell, Cancer, Chemotherapy, Hodgkins Disease, Hodgkins Lymphoma, Pet Scan, UCLA Medical
A benefit to all Hodgkin’s patients.
SGN-25 approved by FDA.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm268781.htm
I spent last week on a retreat in Canada. The experience was quite empowering and profound.
The retreat was given by the Callanish Society: http://www.callanish.org/
It is run by a group of women who have no limits to their compassion and tenderness. Throughout the week, they involved the participants in a number of different techniques which helped us cope with our individual situations, including yoga, music, art, group therapy, food, relaxation, Qi Gong and so, so much more. The staff are all working professionals and highly respected in their fields, yet they take at least 4 weeks out of the year to run these retreats and basically donate their time.
Honestly, I don’t even have the words to describe how incredibly uplifting and powerful the Callanish experience was for me.
The team of caregivers were the warmest, most caring, loving and supportive group of individuals I have ever met in my life. They break down the barrier between doctors, therapists and patients. They embrace life – all the joy and all the pain – and they demonstrate through their own actions how anyone can lead a rich, rewarding life…even when facing some of the toughest challenges any human being has to endure.
Just to be touched in a caring way by another person is a jolt to the system to someone who is used to being poked, prodded and poisoned. To be listened to, instead of having a doctor come running in and out of the examination room. And also to listen, to fully understand that you are not alone in your experience. That we all share the same hopes, dreams, concerns and fears. To reflect on one’s life even while you are reflecting on your death. To be open and honest. Self-reflective yet open to others.
My experience at Callanish will stay with me for the rest of my life.
Also, I was honored to be the first American to attend the retreat. Usually, they reserve the retreats for Canadians, and for good reason. If word gets out about Callanish, then the whole world will be beating a path to their door. They made an exception for me based on the timing of my situation (preparing me physically, mentally and spiritually for my stem cell transplant in October). Also, they were deeply touched by Jen’s emails and discussions. Once again, Jen has shown new depths to her level of caring.
Whether at the beginning of one’s cancer journey or at the end, in remission or without a cure, male or female – the coping techniques taught by Callanish provide strength and support for those who suffer with this terrible disease.
I’m searching for ways to incorporate some of the lessons into my home life, and I’ve found a great resource in Los Angeles in the Cancer Support Community on the Westside: http://www.cancersupportcommunitybenjamincenter.org/
The CSC provides free yoga, Qi Gong, group therapy and other classes for cancer patients. An incredible resource in my own community.
Lastly, I must make special mention of one component of Callanish – the food.
They provided 3 of the most delicious, nutritious and wonderful meals for us every day. The cooking staff was just as much a part of the experience as the doctor, yoga teacher and world-renowned musician. From the cooks whose day jobs is analyzing how nutritional choices affect the blood to the dishwasher, an architect with a deep love of poetry to the sous chef, who attended a Callanish retreat many years ago when dealing with her own cancer experience and she never left. Although there was no direct connection, the Callanish menu mirrors the advice of David Servan-Schreiber in his book Anti-Cancer: A New Way of Life. Jen and I have embraced this book in our attempt to live a healthier, cancer-fighting lifestyle and it was incredible to taste such delicious food, prepared with so much love, that I could feel making my body stronger and healthier. Eating at Callandish was a humbling experience as I really understood for the first time the power and influence of the food we eat.
Oh, and the location wasn’t too bad either: http://thebrewcreekcentre.com/
The setting, the food, the people, the experience. This what health care should be like. Callanish is more powerful than chemotherapy, radiation or any kind of medicine.
Even after 700 words trying to tell you about my week – I have no words.
Callanish – Thank you.
Posted in Uncategorized
Tagged Callanish Society, Cancer, Hodgkins Disease, Hodgkins Lymphoma, Qi Gong, Yoga
Me and Mr. Hodgkins 