My Diagnosis Story – Hodgkins Lymphoma Stage 3B

It’s been exactly 105 days since my diagnosis of cancer. That’s 3 1/2 months or 14 weeks, 2,520 hours, or 7 chemotherapy treatments – however you want to think of it. After my next chemo treatment it’ll finally be time for another PET/CT scan and we can finally see if all this crap has done any good. I thought this might be a good time to recap, especially since I seem to be forgetting certain things about the past year.

I started going to the doctor sometime in April. I had had a cough for too long, and I was getting dizzy all the time. I suspected anemia, but the iron pills I’d been taking like candy didn’t seem to be making any difference. I had lost 25 pounds from what I thought was clean living and good eating (neither of which, I realize now, I was doing). Turns out I was on the ‘Get Sick and Die’ diet, but it would be awhile before the doctors told me that.

The first doctor I went to was the cheapest doc-in-a-box that I could find. I had catastrophic health insurance for emergencies only, and it wouldn’t pay anything for doctor’s visits, or medicine or procedures, or anything like that. It cost me $35 a month, and unless I got my legs ripped off, I didn’t think it would kick in. This is probably the main reason I waited so long to see a doctor in the first place, I had no idea how I would ever pay for whatever was wrong with me.

That doc wanted to do a colonoscopy, but I’d have none of that. It would be thousands of dollars for the procedure, and I wanted to rule out other things first. Namely, I suspected parasites. Yes, it sounds stupid now, but cancer sounded stupid then. I had returned not long before from traveling 6 months abroad, and I thought that maybe I’d picked up some bug. I mean, what Italians call “laying on the beach” is what we Americans call “laying in the dirt,” and if that didn’t kill you, whatever that was that I ate in Tunisia would probably be a prime suspect.

And before that, there were countless opportunities to pick something up. I remember sleeping on the beach in Hawaii (also called “sleeping in the dirt”), getting the flu in Fiji, and getting sick off bad sushi in Norway. I’d spent 6 years eating the cheapest food I could find in the craziest locations I could get to – if anyone was going to have hookworm, it’d be me.

I was obsessed by this point. I probably don’t need to tell you, since most of you probably have a good deal of experience dealing with “men,” but I waited until I was really, really sick to see the doctor. I would get up in the morning and go lay down, I was that sick. The minute I walked into a room I’d look for where I could sit down, I’d have to cut off conversations mid-sentence because I couldn’t stand any longer. I had a writing job at the time, but I could only eek out 3 or 4 hours of work before I’d want to collapse. People began to recognize me from a distance by my cough, they could tell I’d entered the building by my signature hacking.

I can’t lie to you, I thought maybe I was dying. I didn’t know what dying felt like, but if I had to imagine, I would have imagined that it would have felt a lot like that – I remember thinking that at the time. I felt like I was disappearing. I remember a few long nights just before diagnosis, where I’d stare up at the ceiling and worry about death, and think about who I’d want to talk to, or apologize to, or yell at, before meeting the pearly gates.

I convinced the next doctor I went to that I had malaria. There’s one particular strain of malaria that sits in your liver and brain for years before coming out and making a mess. I was convinced that I had it. The only problem was that there was virtually no way that was possible. Unless my body had secretly traveled without me to the Philippines or Indonesia, I hadn’t been any place that I could have picked it up. But desperation is a poor logician, and I was totally convinced.

Well, not totally. But I was really hoping that I would have malaria. I mean, I was really pulling for that malaria test to come back positive – I wanted malaria like a little boy wants a new bicycle on Christmas. If I had malaria I could take the drugs and be cured in 10 days. That sounded great. But the test came back negative. I was really starting to worry.

I was sent to two more docs at this point, a hematologist and a gastroenterologist. Anemia and weight loss following prolonged travel – it sounded a lot like a parasite to them. They thought it might be something called “Whipple’s Disease,” which is fairly uncommon (but I’m a fairly uncommon kind of guy).

Again I was totally convinced. Whipple’s disease! Yeah! Whipple’s disease sounds great! The cure involves 12 months of intense antibiotics. Well, whatever, 12 months is fine. At least it’s not something that I’d die from. I was kind of excited about getting a traveler’s disease – something to prove that I was really a SERIOUS traveler. Every serious traveler’s got to have some sordid story about illness. Something that ends with, “and then I slept for 10 days at a convent in Bangladesh. The nuns had to tie me to the bed for the first 48 hours, but they made the best curry I’ve ever had.” Something like that.

The doc ordered a CAT scan of my abdomen to look for abnormalities in my intestines. I was scheduled for an endoscopy a few days later, but it never came to that.

The doctor called on Monday, the 25th at 9:30am, the day before the endoscopy. He said that he was canceling the endoscopy, that I’d have to go see my oncologist. My what? My oncolo-what? You mean my hematologist, right?

He said that they had found something disturbing in the cat scan. They couldn’t make it out completely, but there was some kind of large mass in my upper abdomen that disappeared into my chest, and my spleen was inexplicably oversized. He said that I’d have to go in immediately for another cat scan of my chest.

Large mass? What does that mean? Is it not suppose to be there?

He said that it could be any number of things, that I shouldn’t worry. The oncologist (there’s that word again) would call tomorrow and I could talk to him about it. Other than that he couldn’t tell me anything.

Man, I could have really gone for some malaria right then.

The next morning the oncologist called. I remember waking up to my Mom frantically waving for my to get on the phone. I don’t remember what he said, it’s all fuzzy to me now. I remember I was looking in mirror when it said whatever he said, and I remember watching my own face drain to white, and everything getting a little slow for a minute.

When you’re my age, and somebody says the word cancer, you hear the word death. Death is like cancer’s shadow — it’s not cancer itself, but it’s always there with it. I thought about the little Castillo girl that died of leukemia when I was in second grade, and I thought about the time when our class walked over to her house in the middle of winter to stand in her living room and sing “Jingle Bells.” And I remember that we didn’t see her that day because her room was upstairs, and she was too sick to leave her bed. And she died soon after. The teacher had been really upset about it, but I didn’t understand it at the time.

My friend Justin was the first person I told, outside of the family. And this is only because he was unlucky enough to call me right afterwards, and I was dumb enough to think I’d be ok answering the phone. That phone call didn’t go well. There were other phone calls after that, the first ones were really hard to get through.

I’ve had bad days in my life, like anybody. But that was definitely the worst day of my life. Nothing could ever compare to the length of that day, to the hopelessness of those hours.

I had this e-mail that I’d been pecking at for weeks. I started writing it when I thought I had malaria, and when the test came back positive, I was going to send it out to let everyone know what was up. Then I had to edit it to Whipple’s Disease, and I was waiting for those tests. But now? How do you send a mass e-mail about something like this? “Hi everybody, Sorry for the mass e-mail but I’ve got a new e-mail address and a huge mass in my chest. I have cancer and I don’t know if I’ll live. Hope you’re all well! Dave.” But I wanted to let friends know, and I couldn’t take anymore phones calls like the ones I’d just had. I wrote a new e-mail, and I later put it up as the first post in this blog (click here).

Then things were just crazy. The next day we met with the pulmonologist, who sent us to the cardiac surgeon, who scheduled surgery for the next day. They would also be inserting a catheter into one of my chest veins for the chemotherapy.

Chemotherapy? Oh shit.

I had the biopsy on a Thursday, and I played my gig on Friday. I was in terrible shape, but I played really well that night. I remember coming into the green room on that Friday before the show, weak and in pain. I couldn’t take the pain killers because I needed to be sharp for the show. I walked in, sat down, and before Dr. Slawson could even get “How are you?” out, I was crying like a baby. Imagine his surprise. Hell, imagine my surprise, it was like my tear ducts just exploded on their own. I pulled it together, though, I was determined to play that damn show. I decided very early on that my life would not be defined by cancer, and neither would I surrender to it. It was really important to me to play that gig. Now, in the future, if I feel like calling in sick to work, I’ll think about the time I woke up from cardiac surgery and played a two hour gig in a tuxedo.

After the diagnosis my family freaked, like any good family would. And my friends flipped, like good friends do. And I had some phone calls that I wasn’t quite ready to have and I did a lot of crying.

I made about 30 phone calls to sperm banks in the greater Chicago area. Oh yes, sperm banks. The thing about chemotherapy is that it kills your boys. Temporarily, hopefully, but you never know, so you gotta send some to the big freezer to make sure that there’s a chance for little Dave’s and Davette’s to be running around driving me nuts one day.

Every one I called, though, (and these are SPERM BANKS I’m talking about) acted like I was a lunatic. “…sir…we don’t do that.” What does a sperm bank do besides bank sperm? I called urologists, sperm banks – anybody I could find. It was Wednesday and I was starting chemo on Monday, this had to get done.

Without going into detail, let’s just say the University of Chicago Andrology Department is a very uncomfortable place with a lot of very melancholy, desperate people in the waiting room. And I hope it was totally unnecessary. One day it’ll be funny. I’ll tell you the story then.

After a few more diagnostic tests – blood tests, a PET scan, etc., it was determined that I had stage IIIB cancer. There are only 4 stages, and the B means I had symptoms. More symptoms than I realized, actually. Once the doctor asked if I had night sweats, of course I said no. He looked at me and asked, “do you wake up in the morning damp?” Ok, now the answer to THAT was yes. Does that mean… Oh, yes, I guess I do have night sweats. Duh.

We also found out that my “large mass,” what they were now calling a “malignant tumor,” was – to use another word the doctors used – “huge.” This thing was massive, and was wedged between my spine and my heart. It was as round as my heart, but it extended farther down. It is amazing to me that I had a thing this size in the middle of my chest and I was still alive. No wonder I had a cough. It would be considered inoperable, if it needed to be operated on. But as it turns out, Hodgkin’s Lymphoma is one of the only cancers that responds to chemotherapy really well. So these days nobody takes out the tumors, the chemo should just melt them away.

I started ABVD chemotherapy on August 8th, 2005. I started this blog around that time as well, so you can probably pick up from there. The first 5 treatments weren’t really that bad, but now they’ve really started to hit me. This past time they sedated me during treatment because, I don’t know, I guess I started freaking out a little.

It was so easy to have a good attitude about this at the beginning. It was so easy to be strong, and to jump into the chemo room every other Monday and say “bring it on.” It was easy to write about, and to sing songs about, and to blog about, it was so easy to make jokes about it – but now it’s not so easy. It’s no fun now. I just sit around the house all day.

I mean, I’ll be fine, there’s no doubt that I will kick this thing and I’ll be a cancer survivor. If I know myself at all, I know that when I’m done I’ll be bragging to everybody I meet, but right now it doesn’t really seem like something to brag about. It just seems like a slow, stupid, foul-tasting mess that I have to sit in, and I can’t wait for it to be done.

My sense of humor, as well as my ability for fluid thought, comes and goes as treatment gets harder, so I seem to have less and less to write about here in the blog. But it still helps me to deal with everything. Forgive me if I don’t update it as regularly as I did a few months ago. I’ll have plenty to write about when my mind gets back in order. I’m just going to hold my breath and get through to the other side of this as quickly as I can.

There should be new PET/CT scan results in within a few weeks. Those results will be really important. I’ll post them as soon as I get them.

16 Responses to “My Diagnosis Story – Hodgkins Lymphoma Stage 3B”

  • I thought I’d leave you a note as you wrote a good summary of your experience with hodgkin’s. I’ve been there too. I’m thankful that it is all over and think it is important to share experiences to encourage others who may just be beginning the journey. Breathe, rest, be well.

  • Thank you so much for sharing, I watched my mama go throgh chemo for 3 years she had mantel cell lymphoma. God bless

  • I have a large masa in the right side of my chest I have enlarged lympnpdes in my chest al I hVe had many ct scans the first hospital to give me a ct didnt even see the mass and it was three months and many trips to tje hpital befor the er doc finally came in and said you have a large mass in your chest ofcourse I inatantly thought ok I have cancer but what kind ix it treatable am I going to die. I had noticed that my chest where the pain had started five months earlyer was now showinh swelling and the pain was getting worse the doctorx admitted me to the hoapital and there I was going tp have test done and see and alot of xocs including an oncologist to make a long xtory xhort I have had two biopays dpne one was a xore needle and the other was a zurgical biopxy of the mass and od the enlarged lymphnodes when I went to see my surgion he was in an emergancy surbery and the nurse at his office told me I dont have cancer ok I xay great what do I have ? They dont know im relievec I dont have cancef but at the same tome what co I have is it something worse sorry about the spelling and puntuation im using mu ancroid and it is a pain I dont have anymore time but I will let you know when I have a diognosis

  • My Mum was diagnosed with IIIB last week Wednesday adn I have been searching the net for reassurance that she is not going to die in the next 5 months. This has given me a lot of hope. Thank you. Stay strong. I want to hear the story where you brag. x

  • my name is kayla abbass .. i am 22 yrs old i found out last july of 2011.. im still goin through testing and getting bad news … i been asking the drs why am i getting over heated like i ould sit and atch t.v and i would be sweating borring sweat. they told me it is normal .. but when i talked to another dr they said hun it is not normal for a cancer to sweat like that… i couldnt enjoy my summer last yr and now this yr… my one wish is to be cancer free or just have no more …. im to young …

    thank u kayla abbass

  • I was diagnosed with stage 111B Hodgkins last december. I have just finished six cycles of ABVD. I had had a cough, lost weight and had night sweats for over a year. Like you i dismissed my weight loss as a positive thing. Wasnt worried about night sweats and heh a cough is just a cough, right?

    Friends finally convinced me to go to doctors when i developed enlarged lymph nodes around my neck. I was told right away i had a chronic disease. The two favourites were TB or ‘maybe something really nasty like Lymphoma’
    I went during my lunch time at work and when asked by collegues how it went, i said ‘well put it like this, i hope i have tuberculosis’.

    Doctors realised quickly it was a lymphoma. Waiting for diagnosis was the worst part for me. When i was told i had Hodgkins i felt like i had won the lottery. Then the reality sank in, i still had cancer, i still might die.

    I was treated on the Rathl trail and my doctors expected me to change to BEACOP from ABVD after a PET scan at the end of the second cycle. However i had pet neg results and continued on ABVD.

    I have swung from deep fear to blase ‘heh ive beat this’, and everything in between. I had a CT scan yesterday and am waiting for my first post chemo results.

    I have found myself reading about the disease for the first time in months. Im scared. I didnt think i would be, but i am.

    Ive worked all the way through chemo. But the thought of it going on and a stem cell transplant fill me with horror. Much more than i thought it could. I think after thinking, ‘i have to get through this six months’,the idea of having to do more is awful when psycologically i am ‘over the line’

    The smart thing you did was to get a chemo line straight away. I have had my veins destroyed by ABVD over the last six months!

    Thanks for sharing and keep positive.

  • I am a five year cancer survivor. I had Hodgkin’s Lymphoma. Oddly, the same cancer my grandmother died from many years ago. My cancer was StageIIB. Man, was I ever sick and in pain. I just assumed I would die. My symptoms? I was very tired. My immune system was a total wreck. You name it, I caught it. I lived on antibiotics. The tumor was in my neck. It got to the point that it would hurt so much I sat and cried from the pain. One day, I got out of the shower and lifted my arms, swollen under arms that looked like two base balls. I was also very tired. I thought it must be mono. Docs thought it was just an infection or that I had cat scratch fever. Ten months later and a million doc visits, finally an ear, nose and throat took it out. He thought it was just an abcess. Long story short, six months of chemo, a PET Scan, and no more cancer!!!
    What brings me to this forum? Today was my yearly ct and mammogram. I am now freaking, as I always do.
    Waiting for the dreaded call back of my mammogram or waiting for the bad news of something. Cancer survivors feel lucky to even live life, but for me it is always like a dark cloud looms overhead. It might drop in one day for a visit.
    There is life after cancer. Don’t give up. Chemo is not that bad. Nothing like you see in the movies. Probably my hardest part, was the hair. It is all back now like it never happened. Do what your doc says, pray, and let things fall where they will.
    A Survivor

  • Hi thank you so muh for sharing. My sister has lymphoma, the doctors are sure about that,(not started chemo yet ). That’s because they needed to find out if the cancer had spread to her hip bone, hence a bone marrow test. The doctor who conducted the bone marrow biopsy also thought it best to conduct a biopsy on another lymph node (not the one that confirmed lymphoma ) the bone marrow test was negative ( thank God) but the lymph node showed signs of TB. She had been on anti TB drugs just before the lymphoma diagnosis. Unfortunately these were discontinued since we facing a different monster, so the doctors thought. Well, now the doctors are inclined to believe she has both TB and lymphoma. We are all numb at this point ; both patient and her family.

  • I was diagnosed with Hodgkins Lymphoma in feb 2010. I went through 6 months ABVD and radiation for 5 weeks. The mass was located in my chest and neck. I was in remission for about 12 months. The cancer showed up in my neck again. So, I went to Oregon Health and Science University in Portland for a auto stem cell transplant. I was in remission for 3 months. The cancer came back in my neck. Now my doctor wanted to do radiation again in my neck. Then they removed 2 lymphnodes in my neck. The cancer came back a little higher in my neck. Now we were doing a salvage therapy until I siad that I am finished. My body has had enough. I can still fill the cancer in my neck and the doctor says 2-3 years. I am only 33. Does anyone else have a poor prognosis and if so what is your doctor doing for you?

  • I was diagnosed with Hodgkin’s stage 2B, in July last year. I had 6 cycles of ABVD before a PET scan which revealed the cancer had continued to grow. After that I was diagnosed with primary refractory Hodgkin’s Lymphoma (this means the cancer is aggressive) as such I transferred to a larger hospital which only treats children (I have just turned 16- was diagnosed at 15). I then started a new chemotherapy regime for 6 weeks before another PET scan which yet again revealed bad results (the new chemo hadn’t done anything and the cancer was still growing). I am now on my third different chemo and about to have a PET scan in a week. I will need a bone marrow transplant if there will ever be a chance of curing my disease but luckily both of my brothers are matches. I am hoping this will all be able to be put behind me soon but so far my cancer journey has been a lot longer than I ever thought.

  • July 9th 2013

    Hi – My husband was diagnosed 5 months before we were married in 2010 – went through chemo than radiation and was cleared clean in July 2011 (had 2 lymph nodes removed in his neck) His immune system is low and he has 2 blood clots in his left from all of the truma involved and an old blood clot in his right leg, yes he is on warfin. He’s 64 years old- a red head and also has an enlarged prostate with a PSA OF 10.6 but as of today – well the last 11 days he has been coughing alot! His internalist said he had a temp of 99.6 and ordered a wet chest x-ray which he said was ok? I want him to have a cat scan of the chest and lungs as I think the cancer is still there waiting… Especially after reading the young 30 year old’s story (dairypro). Could you give me an update on his recovery? And Thank You for this site for sharing cancer stories. dj

  • ” i really could’ve gone for some malaria right then” Ha! you are such a great, talented writer, funny, without artificially trying to make something serious light hearted, because you deal w a lot of sides of cancer on your blog. i really respect the fact you decided not to let cancer define your life and more than anything i think the reason your blog is so powerful is because you are a talented writer, so much of your personality and heart goes into your writing. thanks for the perspective, i read this after a scare at my drs office, which turned out to just be a cyst that was not malignant, so it was no big deal. I am so happy you are healthy, able to enjoy life and see things from your perspective, that you’re still here on this planet writing and playing music… i am a recovering addict also and I’m not comparing our lives because i know i did most of the stuff that i went through to myself, obviously cancer isn’t the same at all but I’ve found that after years of throwing my life away doing heroin (smoking it not IV) i am so lucky not to have gotten aids, or hep c and i feel like i appreciate life now, and like you said now when you want to call in sick to work you think back to the time you played a gig after going through so much, i notice that i don’t sweat the small stuff i don’t take life for granted, i believe in god and it says in the bible that we are refined in a fire we are made into gold. by going through all the bullshit, we can choose to let it make us bitter or to let it open our eyes and through the worst you never lost your sense of humor, i have worked in a hospice and it never fails to amaze me that even on the worst days many of my patients just have such a fighting spirit, they never stop being themselves, they may stop smiling and joking but they don’t let a disease kill that little spark of hope, whatever you want to call it that makes us human. I’ve seen them suffer but ill never know what its like because i haven’t suffered through it myself, but many of my heroes have died at my work they are heroic because of the way they choose to deal w the shitty hand they have been dealt. i just wanted to say i admire you, and thanks for sharing your story. i don’t think you planned on being all inspirational because you don’t seem melodramatic, but damn it , you are very inspirational to me at least and many other people from reading all the comments on here. thank you. heres to many more years of healthy life in all the messy, chaotic, wonderful, truly awesome blessings that life is, even when its a pain in the ass…take care man. keep on writing, and I’m so glad you’re ok.
    Jen from san diego

  • My son had flu like symptoms and night sweats for every night for 3 months before the doctors took me seriously and decided to properly investigate him. My son was 5 years old when he was diagnosed with Hodgkins Lymphoma stage 4B (mixed cellularity type). I was told he had the EBV virus which links to his particular lymphoma, which makes me think that had the doctors responded to his EBV load earlier on, perhaps he wouldn’t have got the Hodgkins..but who knows.
    Anyway, he had 6 months of chemo, responded well and was in remission. He had a small node left in his neck, but doctors were happy that it was not a cancerous looking one.
    Just under 2 years later a routine ultra sound examination showed that the node left in his neck from last time had become malignant and basically that he had relapsed.
    The doctors decided he should now have an autologous stem cell transplant together with high dose chemo. We went through this and things started off ok, but while my son was having the high dose chemo and was completely immunosuppresant, he caught 2 hospital bugs and became septacaemic! Septacaemia is life threatening even for a normal human being, so I was boggled about what chances my son had to fight this seeing he was completely immunosuppressed. He was in ICU for more than 2 weeks with the doctors often thinking the very worse. The doctors even said his lungs had heamorraged and all sorts. But somehow as if by miracle, he started to improve.
    He then improved day by day until we were allowed home and he was in sweet remission again.
    It’s now just under 2 years, and just when we were again beginning to lead a normal enough life, another routine ultra sound has again left us freaking out. They have seen some abnormal nodes in the US scan, bloods showed his ESR was 18 (normal range is 0-10), plus a PET scan which shows uptake in the abdomen and neck! My usually optimistic doctor thinks he has relapsed but we are hanging onto the hope that the biopsy will show that he has not relapsed. They will biopsy the node in the neck and also the bone marrow. I would give anything to hear that the biopsy results are clear…
    The confusing thing is that my son is completely well in himself this time, so its hard to believe that something is wrong. My heart jusy doesn’t want to believe it. His 10th birthday is also coming up.
    I’m giving him carrot juice (with broccoli, kale and an apple) twice a day, and a teaspoon of manuka honey mixed with a fat pinch of turmeric powder and a fat pinch of caraway (nigella) seeds every day too. I’m praying that somehow he will improve before the biopsy and results will be favourable.

  • Hello,
    I was diagnosed with HL in May started my ABVD treatment first week of June. Showed remission after my last chemo sept 5. Went for a follow up scan to find out it’s now in my chest, this never showed in prior scan. Dr wanted me to start on more agressive since chemo and SCT in January. After second opinion was told today that they need to remove that node in chest so they can make sure it’s hodgkin. Now back to waiting game to see what this thing in my chest is. Apparently they haven’t encountered this before hence the surgery

  • Hi David, I’m currently researching how cancer survivors talk about their experiences and feelings during the illness by looking at their blogs. I would like to ask if I could use yours in my research. If this is something you would like more information on, please feel free to contact me. Thank you for your time.

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