Letting it sink in

How does one deal with the prospect of going through cancer treatment?

That’s an impossible question to answer on a single broad stroke. It’s a lot like asking, “What one thing can I do to make sure I live to be 100+?”. In my case I’ve gone through most of the same stages as one would when a loved one dies.

1. SHOCK and DENIAL:

When I first found out I definitely had cancer and would definitely need chemotherapy to have any chance at seeing my son grow up I was at a loss. I was stuck in a state of numbed disbelief. I also internally denied the fact that this was happening to me. I mean, how could it right? This isn’t supposed to happen to me for fucksakes. Shock sets in as a mechanism to protect from being overwhelmed. It sucks.

2. PAIN and GUILT:

So after the shock of it all began to wear off I began to feel a tremendous amount of both pain and guilt. Not for myself. I mean let’s be honest if I die, I’m not really going to suffer for it. No, I feel an unbelievable amount of both pain and guilt for my wife and son. My wife because if I don’t make it she will be left holding the pieces of a shatter life and will be forced to move on. I hate that idea. And for my son I feel a sense of devastation becasse as a child I did not have a father (since that cocksucker left when I was 2). I vowed that when I had kids I would never do that to them. Now, I may be forced into doing that and I hate myself for it. All around feeling of guilt.

3. ANGER and BARGAINING:

My feelings of guilt gradually turn to anger. I am PISSED that I have to put my loved ones through this. I am PISSED that I have to put my coworkers through this. and most of all I am fucking PISSED that I have to subject myself to being poisoned (essentially) just in the hopes that I can survive this. For all the nice and good things I’ve done in my life this is some bullshit.

4. DEPRESSION, REFLECTION, LONELINESS:

After I realized that there was nothing I could do except for accepting what is happening to me. I then got depressed. REALLY depressed. I still am at this point, but what can I do? I have to be strong. If not for myself for my family. This is so unfair to them. I am depressed at the prospects of not being around to see my son grow up. I feel like I am all alone. yeah, there are people gunning for me and there is family support but they don’t know what I am going through. Do they?

5. UPWARD TURN:

It’s where I am right now. I have come to terms with my disease. I have gotten angry and depressed and have decided how I want to approach this shitty situation. It’s here where I proclaim that I will beat this fucking disease and I WILL be around to see my wife age and my son grow up. I’ll be damned if I am going to hurt my wife that way, or have my son harbor similar feelings that I harbor for my dad. Granted, It’d be a much different  situation but every boy wants his daddy.

6. RECONSTRUCTION:

I’ll go through chemo and do all the things I have to do to stay healthy and ALIVE. I’m no good to anyone in a box underground

7.  ACCEPTANCE and HOPE:

I’ll keep a positive attitude, put on a brave face (even if I am scared shitless inside) and trudge trough and hope for the best. If anything I hope to help other people going through exactly what I am going though at the moment. Google is a wonderful tool, but it does not yet allow me to find people. People who have been through this are the best form of therapy for those that are about to go through it, or have started their journey through it. Medical advancements in this area are nothing short of amazing. There is hope; I have to believe that.

Don’t get me wrong. I am in no way trying to trivialize my condition of the conditions of millions of other people stuck having to deal with fucking cancer. But when standing on the edge of the cliff we can do one of two things….We can jump off and be done with it or we can turn around and face the force that got us to the edge in the first place. For my wife, for my son and for myself I am turning and facing this cancer full on. This motherfucker won’t know what hit it. I am determined!

The Call Part Two

After letting it sink in a bit that I have cancer I quickly changed from denial to anger. I will use this anger to beat this and save my life.
I sent the doctor at the NIH some questions I think are reasonable to ask as someone who is 1) cancerous 2) in need of treatment but doesn’t know anyone directly to talk to and 3) considering a clinical trial to increase my chances of success.

So, I heard back from the doctor at the NIH today. I was glad he called rather than just coldly answer my questions in an email. I find that I learn not only with traditional methods but also with some “face to face” or at least having a human on the other end of the phone (I’ll take what I can get). After talking with him I don’t feel better about having cancer but I do feel better about what is going to happen to me and most importantly the URGENCY.

I am healthy right now, so I need to treat this right now so that I can move on right now. It’s crazy to think just two weeks ago I was lounging about happily thinking, “Oh I’ll probably never need treatment for this TCLGL/ITP-whatever-the-fuck” and now I am scrambling to come to terms with cancer and get treatment planned. Crazy how life throws curveballs, eh? I would say something like, “Life sucks” but that isn’t true at all. Life, to me, is something that couldn’t be more precious. Everyone faces their own mortality at some point in their lives, but to face it in such a way as to not know if you’ll be around in 5 years certainly puts a tight spin on that ball.

I decided to publically share the questions (and answers) I asked the good doctor at the NIH. Some of them are obvious, some not so much. Take from it what you will. I did
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1. What stage of the lymphoma am I? I’ve read conflicting information on the web that can put me at a stage 0/1 because I show no symptoms all the way to a stage IV since I have a single organ involvement (marrow)
Stage IV – due to marrow and blood involvement as well as spleen enlargement


2. What is the specific cocktail of chemotherapy you are suggesting for my condition?
Siplizumab + EPOCH-R

3. What would be the frequency and duration of the chemotherapy treatment?
a. How long of a stay would be involved?
b. How often would a trip to the NIH be necessary?
6 treatments spaced 3 weeks apart. Treatment is 4-5 days in length and the first one would be in-patient


4. How long between treatments?
3 weeks

5. After receiving chemotherapy is it safe to fly home?
a. If not how long would it be after a treatment until I could return home?
Safe to fly. Blood counts won’t drop typically until day 10-14 after.


6. Will the chemotherapy have an effect on either my sperm count or my testes? Should I consider sterility as a possible side-effect and prepare for that before I consider chemotherapy?
This IS a concern. However, most people do recover fertility but do not try to conceive while on treatment or for 4-6 months after treatment. Banking sperm is a good option to explore


7. Is a bone marrow transplant something that could help my situation?
a. Is this something to consider early or if and only if chemo doesn’t work?
Yes. Since I have no brothers or sisters the next step should chemo not work would be marrow transplant.


8. What are the general side effects of the chemotherapy cocktail you are suggesting for me?
Hair loss, increased risk for infection, etc…


9. What are the general side effects of the experimental element of the cocktail and why is it being thought effective?
Hair loss, increased risk for infection, etc …

10. How would this combined treatment be different from the standard treatment for this condition?
Mainly prognosis: Without is approx 20-40% after 5 years, with: 40-60% after 5 years for those symptomatic. Might be slightly better off since I am not yet symptomatic


11. What kinds of additional testing would be necessary for monitoring my condition during treatment as well as post-treatment?
PET Scans and additional biopsies and spinal tap

12. What are the statistics for the survival of this type of lymphoma?
20-40% (standard treatment) after 5 years, 40-60% with this treatment


13. Can you point me to information about this experimental drug so I can do some research on my own before-hand?
Will send the consent form that has explicit details about each drug but the treatment will be “Spilizumab EPOCH-R”


14. What form will the chemotherapy be delivered in (e.g. IV-drip, Pill, etc)?
Two drugs (prednisone and one other) by mouth. The rest by IV/pump.


15. Would I be admitted over night during the treatment?
For the first treatment yes, for the others it will be wait-n-see

16. Is there anything I can do on my own to both aid in recovering and increase my chance for a cure? For example dietary changes, supplements, etc.
Everything in moderation, but do what I feel most comfortable with


17. Might this form of lymphoma be hereditary, or more-or-less random/environmental/exposure? I ask this because I do have a son and want to know if he’ll be predisposed.
Some forms yes, but this form NO. There is no known idiopathy to this lymphoma classification.


18. When my son was born we banked his cord blood. Could that be of any immediate or long-term assistance to my condition?
YES!

19. When undergoing chemotherapy how long it is typical to begin seeing results?
a. How long afterward will we know if I am cured/in remission or id did not work
Some patients see remission after the first treatment others see beneficial signs soon thereafter. There are currently 3 other patients under this regimen and each has either shown signs of remission or have remissed.


20. In the worst case scenario the chemotherapy does not work; What’s next in progressive stages?
Chemo, bone marrow transplant, cord blood, endgame

21. Once I undergo chemotherapy what state will my immune system be in? By this I mean: Do I need to isolate myself from my family/friends/work?
NO need to isolate myself. Use common sense when experiencing symptoms, and stay away from overtly sick people


22. As someone who, basically, has no outward symptoms is chemotherapy the best course at this time?
Underlying disease is still there. World experts all came to the same consensus regarding diagnosis, it WILL become aggressive. It’s better to treat before than rather than during or after as it will raise my survival chances.

23. Are my lymphocytes dividing fast enough right now for chemotherapy to be effective or would a monoclonal antibody be better (like Rituxan)?
Some yes, but that is why they add an additional drug that attaches to the lymphoma cells. Rituxan is the “-R” portion and Siplizumab is the monoclonal antibody.


24. Has active or passive immunotherapy been considered? Would that work?
One of the drugs in the cocktail is passive immunotherapy. Jury’s still out on active; too experimental and would not be considered at this time. Name of drug to be sent by Dr. Morris.

25. What are your thoughts about complimenting the chemotherapy with a holistic approach to diet? For example the Gerson Therapy or even just moving to an alkaline-based diet (to move my tissue pH to more-neutral)?
Anything in moderation. New evidence to suggest that mega-doses of Vit C can SPEED up the grow of a tumor, etc. Mega doses of Vitamin C have actually been shown to INCREASE growth rate of certain tumors and the infamous coffee enema of the Gerson Treatment can be fatally dangerous.


26. Will I need to make changes in my work, family life, and leisure time?
NONE other than reconsidering physical activity, e.g. no more basketball, football or “rugby”


27. Will you be a part of the team that treats and monitors me? If other specialists take part in my care, who will coordinate my entire treatment program?
Yes, as will several other world-renown lymphoma specialists

28. Will there be any members on the team that specialize in this type of cancer?
Yes


29. What symptoms or problems should I report right away?
Fever, chills, night sweats, etc.


30. What are the chances that my cancer may recur (come back), with the treatment programs we have discussed?
50-50



31. What is the best time to call you if I have a question?
Anytime, leave voicemail and will get a call back. Call the research nurse also if necessary.


32. Can you recommend any patient support groups in my area?
Leukemia and Lymphoma Society
Cancer society

Got The Call!

Not surprisingly I just got off the phone with Dr. Morris from the NIH. I say not surprisingly because I knew he’d call when he had answers. Unfortunately the answers aren’t good. My diagnosis?:
Peripheral T-Cell Lymphoma

That sounds familiar. I was originally diagnosed with this for about an hour and a half two years ago. Then my diagnosis was changed to T-Cell LGL. *gulp* this is not good. Doctor goes on to tell me that while I don’t exhibit symptoms now Lymphoma is typically a very aggressive type of cancer and that I came to them when I did was a miracle.

I agree. Had I not gone up to NIH to get answers I’d still be thinking I either have ITP (benign) of T-Cell LGL (malignant but indolent). I’d be dead without this knowledge. So, I am left holding the bag on this one. It’s a peculiar feeling to be on the phone with another human being delivering a diagnosis that could, quite possibly, spell the end of your existence. So, with that I think I need to absorb all of this and figure out where I stand on the issue. The NIH team wants to “get back with me once they talk to my regular hematologist”. Mkuy? Mkuy! I think Dr. P will agree, but ultimately will be shocked. I firmly believe that Dr. P cares about my well-being since I approached him two years ago. My honesty and straightforwardness allowed him to be open with me. Hopefully this continues.

Will report back.

Testing Day Two

Well, today was somewhat of a letdown. I mean, yes I got to meet Dr. Morris and part of his team. Which, by the way, was very impressed with my level of knowledge of medical in general but specifically with the two conditions I might have.

I used to want to be a doctor so medical-ese comes naturally to me so to say things like idiopathic thrombocytopenia purpura are pretty straight-forward.  He basically asked me if I knew of the conditions and when I said I did he said, “ok good. What are they?” *gulp* OK let me collect my thoughts …. I started with what I know and went in order. A good 8-10 minutes later I was done and he had a surprised look on his face. Guess he’s used to dumbing shit down so his patients can understand. Not this motherfucker, man. Not this motherfucker. Just talk.

Well, what he had to say was somewhat off-putting. He said that basically the think that I have some auto-immune disorder and that it should “blow over”; that there’s nothing to really be concerned about at this point. However, admittedly it was just based on my blood work, and that it would be another week or so for the biopsy results (to which some 2000 test were being conducted). By the way, he could tell I had been “working out strenuously” because my CPK was off the charts. Hehehe, I spent two days walking around in DC in 95 degree weather. Yeah I guess 96 degree heat and walking almost 15 miles would do that eh Doc? 
Leaving kind of dejected and feeling like I got nowhere. I already knew I have a couple of things working against me but FUCK! Hopefully he’ll call me with some news. Good or bad I need to know what the hell I have, so that I can mentally prepare for anything I need to….leetttttttt’s gooooooooooooO!

Sightseeing is over, time for “work”

Ok, we’re in DC and just spent the last two days sight-seeing. It’s been great, but I know that tomorrow and Tuesday I’ll be poked and prodded in such a way that will, undoubtedly, help me understand all the alien abduction stories in a different light. I just hope I don’t come home with a satellite in my ass.
It was nice seeing some of my wife’s friends at the zoo and also at dinner. I won’t tell her this but even though they are technically her friends I found great comfort in being around them. “Cancer” and “Health Problem” are words that never came up. Though, they did seem genuinely concerned that I be OK. I appreciate that.
So tomorrow I have a blood draw and a bone marrow biopsy. Then Tuesday I have CT scan and finally get to meet the Doctor. Should be either Dr. Morris or Dr. Stannick; both of whom I respect greatly for their work.

Off to the NIH

So, we’re off to the nation’s capital to try and find out once and for all what the hell I’ve got. To bring any new people up to date my situation looks a little like this (and a hearty hello while we’re at it J):

About two years ago I went to see my primary physician for a routine physical. As part of the physical they drew blood for a CBC. Ok, no problem I thought. That lab came back as “Gee, your platelet count is a little low we’re going to refer you to a hematologist. It’s probably nothing but we’d fell better if you saw him” Two things 1) my platelet count back then was 139 (where 140 is considered “normal”) and 2) I’d fucking kill to have a platelet count that high now. Ok, so I went to see this hematologist … didn’t really dig him; seemed to move sloooowly in the way of trying to figure out what I was all about.

He ordered another blood test and a flow cytometry. I didn’t think much of it because “I’m so healthy”; neither did he. About a month later we reconvened to discuss the results.

“Hmmppphhh,” he snorted, “this absolutely puzzles me…” The flow cytometry indicated that I not only had a T-Cell population in my blood (albeit a small population at < 5%) but that the T-Cell exhibited as monoclonal with a gene rearrangement. Back then that meant nothing to me. Now, however, that means lymphoma.

I said earlier that I did not like this hematologist. Slow poke wanted to wait 2-3 months before proceeding with the next step of testing. At this point you all should know that I am a very aggressive person about most things I do but with this, the one thing I needed to be aggressive about, I wasn’t. I agreed to wait still thinking there was nothing to it, and everything would be as fine as it ever was.

My wife on the other hand took the lead on this topic and found me another hematologist; one that was highly recommended by a family member. So, I thought, “What the fuck? Sure I’ll see him”. One week later I was at his office explaining what the labs showed, my history and all the other obligatory bullshit you get to “go over” when you’re a new patient. Anyhow, at one point I said, “Listen. You seem like a really good doctor, but you need to know that I am not here to fuck around and I need to find answers and/or treat if necessary…”. Besides not looking puzzled at all and not skipping a beat re replied, “Well I can appreciate that. The only way I am going to get answers is to perform a bone marrow biopsy”. 15 minutes I was on the table getting a drill sized needle crammed into my back. That was the aggressive I was looking for. He came back with a preliminary diagnosis of “Peripheral T-Cell Lymphoma”. Then, an hour or two later called me back and explained that he didn’t feel comfortable with that and after conferring with his colleagues at Sloan Kettering they agreed to change the diagnosis to ““T-Cell Large Granular Lymphocyte Leukemia”. Oh. So what do we do? “We wait and watch. Right now you’re asymptomatic and there’s nothing to treat.”

Fast forward two years of a slightly negative downward-trending linear line that is my platelet count …

So, I’ve just gotten tired of not knowing what is wrong with me. I need a name for whatever the fuck this is. Good or bad I need to know so I can mentally prepare. Is it ITP, or is it T-Cell LGL? Please I just have to know goddamnit!