My Story

Spring 2010 I develop the tiniest cough. Just the smallest tickle, only really in morning and at night, and the development of the cough seemed to coincide with the changing season. Plus the air conditioner started blowing nonstop at work. I figured I was having a small allergy, or some postnasal drip, or something extremely minor. Come July 2010, I start to lose some weight…but also at this time I clean up my diet. You see I love donuts. And I guess I found out they are chock-full of partially hydrogenated oil, which is another word for trans fat, which as we all know is straight up deadly. So I stopped eating donuts cold turkey, along with other sweet treats. I thought I was dropping a couple pounds from eating better. I did notice that from July 2010 through October 2010 I kept losing weight, although gradually. I was also very tired, and my weightlifting was suffering in the gym. I was getting a little bit smaller and weaker, but I thought I was getting weaker because I had lost weight from eating better, and also as a lot of you know, I was working some crazy long shifts (14 hour days with no breaks). In my mind, all of this added up to why I felt tired all of the time and why I had lost some weight. Also in the summer I started experiencing drenching night sweats. But it was a hot summer. I have always been hot-blooded when it comes to sleeping and assumed there were some nights I was just waking up hot. The air conditioning is terrible in my town house. It was annoying but I didn’t relate it to any disease at all, plus it didn’t happen every night. Then between Sep and Oct 2010 there seemed to be a lot of people asking if I felt alright, if I was sick. I shrugged it off thinking I’m just super tired from working these extremely long shifts. Finally one day in late October one of my kind ladies came into the pharmacy and asked if I was feeling alright, if I were sick. I had had enough, I called my family doctor to schedule a checkup since I was still having this small cough as well.

End of October 2010, I go into the doctor. He thinks my cough could be post nasal drip, or maybe some allergy type thing. He tells me to get some saline nasal rinse, and for me to go have a chest xray the following day. The next day I get the chest xray, and go about my business. It was my day off so around 5pm I was actually at my parents house, getting ready to put my car away for winter storage when my family doctor calls my grandmothers phone (she lives with my parents). I find this EXTREMELY odd, as it was 530pm. I answer the phone, they say there is a mass on the chest xray in my upper right lobe, and they are sending me in for an immediate cat scan first thing the following morning. It was at this moment I learned what fear is. My heart dropped. I could tell in the doctors voice that something was extremely wrong. I cried hard and everything in my life swirled.

The following morning I had the CAT scan. They could not confirm what this mass was, only that there was a mass by my lung. They didn’t really know if it was in my lung. First thoughts were infection, tuberculosis, or cancer. I was then sent to a chest doctor in Erie who had me go through bronchoscopy, endoscopy, needle biopsy (which was insanely scary…no drugs, no anesthesia, they call the needle “the spear”, and tell you to not open your eyes. They are biopsying through your chest wall one inch below your chin. They just squeeze your hand and beg you not to open your eyes). This chest doctor beat around the bush, all he could ever say, “something is going on behind the mediastinum (middle part of chest wall). He never mentioned cancer – was honestly a waste of time. Then he referred me to a thoracic surgeon who upon the first visit said “looks like Hodgkin lymphoma” and set up a mediastinoscopy biopsy (they cut a hole behind your breast bone and go behind it and cut out a piece of the questionable tissue). This was on December 3, 2010. That is the day I was diagnosed with Hodgkins Lymphoma.

Within the next 2 weeks, I am set up with a local oncologist and I am set to receive a PET scan, which is a basically a CAT scan that images the body parts with the use of radioactive glucose. Cancer cells like to utilize glucose (sugar) more than regular cells, so the scan will show up brighter in spots that are uptaking more glucose, ie the tumors. So I get my results, I am diagnosed with multiple tumors throughout my chest cavity, relating to my lymph nodes. I am diagnosed officially with stage IIb (stage II means that I have multiple tumors but they haven’t spread outside of affected area and the “b” refers to the fact I was symptomatic with weight loss, night sweats, and some strange itchy skin). Prognosis was great, 90% cure rate after just the first type of chemo. As a matter of fact, the doctor said to me straight up: “If you are going to get a cancer this is the best one to get” – due to its high cure rate. I was very hopeful, and I was scheduled to have 12 treatments of the drug regimen ABVD (adriamycin, bleomycin, vinblastine, dacarbazine) that would last 6 months. I was very scared of chemo because as a pharmacist I understood just how crazy these drugs are within the cells of our bodies.

So I get 6 treatments with ABVD. I won’t go into how bad this made me feel because theres a lot to cover here. After these 6 treatments (halfway) I get another PET scan to see how the drugs are working. Scan comes back amazing, mostly everything is gone. I feel great. But the good news is overshadowed by something else on the scan: pneumonitis (inflammation of the small sacs in the lungs which if not corrected can lead to permanent and irreversible lung damage). This is a direct result of the one chemo drug bleomycin. Doctor immediately discontinues this drug, the pneumonitis gets better, and I finish my last 6 treatments with just the 3 chemo drugs (AVD). I am feeling great at this point psychologically. I am convinced I am cancer free, I mean I have to be, the scan was pretty much clean after 3 months, and I had just endured another 3 months so this cancer must not even exist. I get my final PET scan at the end of June 2010, results beginning of July. I am already just getting back to work, life is returning to normal although I’m pretty beat up from all of the chemo. I get the scan results: something has shown back up. Something has grown WHILE I was on the chemo. What a scary unexpected blow. How could this be, I think. Doctor decides that although the spot is small, he wants to send me to a specialist in Roswell Park in Buffalo to take a look at it. I finally manage to get an appointment with this world-renowned doctor here in Buffalo. His first impression is uncertainty. He thinks the spot could just be inflammation. His plan is to wait another 4 weeks and scan again, and if the spot has grown, then obviously its not inflammation, and it is most likely cancer, since the spot is in the same spot as the original cancer. I am scared. I continue to work and have a normal life basically, then in the middle of August I get another scan which confirms the spot has grown, and is most likely cancer. This means I now officially have a cancer that was able to grow through chemo, and this makes my tumor a much scarier proposition.

So here we are, a chemo resistant tumor. In the medical profession they call this a primary refractory tumor. The new doctor decides to try some higher dose chemo as an inpatient. The first regimen is 3 straight days of chemo while being admitted to the hospital. Its called ICE (ifosfamide, carboplatin, and etoposide). Surprisingly I tolerate it well. I get this treatment twice. My hair falls out completely all within a few hours about two weeks after just the first treatment. This crap is strong. I get another scan, which shows that the chemo worked just a little bit. The tumor shrunk a bit, but not nearly as much as the doctor had hoped. He decides to try a different inpatient chemo regimen called DHAC (dexamethasone, high-dose cytrarabine, carboplatin). I get this one time, and he does another scan. The scan department tells the doctor the DHAC shrunk the tumor more, so the doctor decides to give me one more dose of it. During the last day of my hospital stay to get this dose (with me chock full of chemo) we all find out the radiology department had compared the wrong scans, and the tumor had actually GROWN during my first DHAC therapy. So now here I sit with a second DHAC therapy filling my blood. Talk about fear. And to top it off, my body and blood counts were starting to not do so hot since I had been enduring moderate dose in-patient chemo for almost 3 straight months. So I had just received a whole batch of terrible chemo when I shouldn’t have at all. It was a terrible error. Worst error this doctor had ever encountered. After this chemo my bone marrow really gets hit hard. About 10 days after I receive this unnecessary chemo, my blood counts tank. My platelets drop to one (normal is 150 – 400). Anytime platelets are below 10 a person is at risk for spontaneous brain bleeding, and mine were at 1. I have to be admitted to the hospital to receive a platelet transfusion. I also ended up needing a blood transfusion after this round of chemo, and my immune system officially went to zero. I’m very very glad I had my own medical training and recognized the bleeding beneath my skin to alert me that my platelets were gravely low. Finally my counts start to recover, and I get another scan. The tumor has grown a bit more, although not as much as through the first round of DHAC. Doctor now wants to get another biopsy to make sure we are still dealing with Hodgkins lymphoma (since this damn cancer isn’t budging from crazy chemo), and if we are, he wants to try a brand new drug that targets a specific marker on the Hodgkins cells, so we have to make sure I have those markers.

In December 2011 I get the biopsy, and indeed the cancer is still Hodgkins Lymphoma with lots of markers so this new drug could work. This is great news. Also during this biopsy the thoracic surgeon noticed that there was some lung tissue involvement with the cancer, which means the cancer in the lymph node had assimilated into my lung tissue a bit. So I receive two treatments of this new drug called brentuximab. Its an easier chemo, only a 30 minute infusion (which by the way costs 54 thousand dollars for this little bag of chemo that runs for 30 minutes…..unreal) that shouldn’t hit my blood counts as hard, but it surprisingly still makes me feel terrible. I get a scan after two treatments, and the tumor had shrunk like 95%!!! I think it was the happiest day of my life finding out that news. Finally something was working. Doctor decides to give me 2 more treatments since its working so well, and set me up for a stem cell transplant.

Beginning of March 2012 and I am meeting with the transplant team after finishing up my treatments. I get a scan to make sure the last two treatments worked (of course they would, the first two nearly wiped it out)…and the cancer has returned. My main doctor is totally surprised, the transplant doctor is surprised, and once again I am punched in the face. Another blow. I mean seriously how many freaking chemos can this cancer endure? I am unable to have a transplant because in order for the transplant to be successful the tumor needs to be just about gone, if not gone completely. The doctor says lets try this chemo pill in addition to the treatment that has worked before. This chemo pill is pregnancy category X, and if I were to get my wife pregnant while I was on this pill we’d have 100% chance of having a baby with deformity problems. This is a scary pill. The bottle even says “dispose of as biohazard”. So I take this pill for 5 weeks. I get a scan…the pill didn’t work. The cancer remains, but hadn’t grown much (which is good at least it was controlled). At this point the doctor says we are just going to radiate immediately. The following week (which is now end of April 2012) I meet with the radiologist, and he starts radiation to my chest immediately. I drive to Buffalo from Erie every single day for 18 days (well not on weekends) for a 3 minute treatment. Radiation was very easy in terms of how it felt, was a walk in the park compared to the chemo sessions I had been through. Since the radiation is so powerful, they can’t do a scan for at least 12 weeks to see if there is any remaining cancer (because the radiation will light up on the scan as inflammation), but a CAT scan can be performed simply to look at the size of the tissue left in my chest. I had this scan last Friday (June 1) and yesterday I found out that the mass had shrunk, and the radiologist was very happy with the results. So this means the radiation seems to have worked really well, although we won’t get an actual PET scan for 3 months which will really show whats left.

Now after a multitude of appointments (and when I say multitude I mean eleven billion), I’m cleared for a stem cell transplant, which starts tomorrow, and thus where my blog begins.