I have developed a lot of superstitions after getting sick. I never say that I’m cured. I bristle when I think about the word “remission”. I never let my brain dwell too hard on relapse. If any of these thoughts cross my mind, I feel like its going to come back. You see this in those with OCD – thinking that mere thoughts can cause large scale actions.
So when I thought I was relapsing, I did what made sense to me. I didn’t tell anyone.
If I was a better blogger, I would have blogged as this happened. Details get lost as time passes and the acute observations caused by an adrenaline overload fade. This is all in retrospect of what I can safely say was my worst week ever. Even worse than the weeks around when I was diagnosed. Relapse is far more frightening than cancer itself, for many reasons. Tougher treatment, guaranteed time out of work, almost-guaranteed fertility loss, the horrifying idea of a stem-cell transplant (which is quite similar to a bone marrow transplant if we’re talking on levels of severity).
Hodgkin’s relapses are tricky. For people like me who never had what are called “B” symptoms (fevers, night sweats, large unintended weight loss), a relapse can come up as silently as the first occurrence. When I discovered the swollen lymph node in previously cancered armpit, I shut the thoughts up in that dark corner of your mind where you repress memories that later manifest as a 57 year old with a hording problem. And, like those memories, you never really seal them off completely.
The anxiety grew with every day – and anxiety is a tricky monster. It mimics the exact symptoms a large scale relapse with growing tumors would cause – shortness of breath and breathlessness, pressure in the chest, extreme fatigue, phantom pains in my lymph nodes, abdominal pain, stress hives, and back pain.
Oh the back pain. Alcohol induced back pain is my baseline. Within a few sips of alcohol in the past, my lower back would erupt in spasms. Eventually, as the tumors pressed against my spine, this became a nightly occurrence even without any drinking.
Alcohol was not causing the back pain this time, and the back pain was no where near as severe, but it’s easy to make yourself think anything when you go into crisis mode. Fear elicits the most primal of behaviors and thought processes. For me, this involved regressing to the higher thinking levels necessary only to provide food, water, and sleep. Remembering to put my car into “park” was a challenge.
Who knew a little mass the size of a small marble could cause so much damage?
Friday night through Tuesday, fears simply mounted. Finally on Tuesday, Valentine’s Day, I broke and told the boy, who immediately came over and made me call my doctor. On the upside, my room was spotless for his first introduction to my apartment.
PET scan happened on Friday. They always happen on Fridays. That means they’re not read until the following week. At this point, I had crossed from the denial stage to the preparation stage. I started to tell people that I thought I was relapsing. I got coworkers mentally prepared and well-connected people ready to fundraise. Then I moved into emotional diarrhea and told EVERYONE.
Scan was read on Tuesday. Of course, fine. Though I had every reason to believe it wasn’t fine. Luckily I have an oncology team that never belittles my fear. My oncologist even apologized to me that I could feel the node – as if he had control. It’s either more cell die off or my body fighting off illness. What a body not riddled with a cancer of the lymph nodes is designed to do.
After I got the clean results, the boy looked at me and said very simply, “You just got great news. Why don’t you seem happy?” The fact of the matter is, it was much easier to be happy and feel like an active participant in my health when I was in treatment. I knew that by going to the cancer center every other Friday, something was actively being done to kill the cancer cells. Now, I feel like I’m waiting for it to come back. (Cue the “Buy my aloe/acai/goji berry/obscure Middle Eastern herb and it will kill ALL errant cancer cells!” bots. Except they’d never say “errant”.)
I’d like to say that “Survivorship gets harder before it gets easier” falls under a thing that no one tells you is going to happen after you are done with cancer. But in fact, it’s something that everyone tells you. You just can’t believe it until it actually happens to you. The human mind simply cannot anticipate the complex range of emotions, fears, anxieties, stresses, and, dare I say, level of PTSD, that you can experience after such a trauma.
But after two relapse scares in 6 months since ending treatment, you learn how to dust yourself off and keep moving. What else can you do?
Allie E. Morse 
I wish I could reach in & hug you! I’m so sorry because I know what you’re going through with thinking of relapse but not from a patient perspective; the wife. Women worry more in general then men. I’m scared crapless with every throat scope & pet scan. My hub; no & he means it. He tells me that he knows it’s not coming back because we found the best team the 1st time & even though I know it; there is still a 1% doubt because with his type; it’s common for recurrence.
I wish I could tell you to worry less; because it’s easier said then done; especially if you are female & the patient. Is there any way you can try writing more; if not for everyone to read but for yourself? If you have gmail; you can write a draft email & just keep adding on to it; at least you will be tracking possible symptoms & will have a record of it. Do they have a buddy system where you’re being treated? It could help to have someone to call or text that has been where you are. Paying attention could end up saving your life; but too much stress is also not good.
How often do you see your team? Do they regularly check your blood? I’m not familiar with your type of Leukemia; with my dads AML; he went 3x week.
~Hugs
Thanks! I think about you and your husband often. This was actually the first time I had seen the doctor since my first iffy PET scan a month after treatment ended – they basically forgot about me and in my trying to forget about the illness, I didn’t call to clarify. That’s a post for another time, though. I’m on a twice yearly PET scans, see my doctor/blood work every 3 months, and port flush every 6 weeks (probably will have it removed sometime after the 1 year mark) schedule.
Please call to see about a buddy. There are days I wish we had one. I go to Cancer Compass; also CSN; so at least if I had worries; I can post to get feedback from others with his type. How do you feel about blood every 3 months? Why don’t they do it more often? I wish I knew the difference between your type & my dads; his was a nasty & very aggressive type.
I tried to google follow ups; but it says; your Dr will give you a schedule 😦 What I’ve done with hub; he had 3 Dr’s- ENT; Rad oncologist & oncol. For his type;. we feel the oncol is worthless. He was supposed to see each Dr every 12 weeks at 1st & instead of making the appointments at the same time; I staggered the appointments so he was seeing one of the 2 every 6 weeks because I knew that with his type; between year 1 & 2 after treatment was when it usually came back. I don’t think the Drs knew I was doing this with appointments; but it made me feel better that someone was regularly looking down his throat with a scope. If you have a team of Drs; you may be able to do this too where you do not see them all the same day. You will go more frequently; but it may give you some peace of mind.
Where are you having the PET done? We’ve found that if he gets his at Jefferson; they have the results that day; even on a Friday. If we go local; it takes longer. One of the physicians assistants is great about calling me when the results hit her desk so that we do not have to wait the weekend.
Oral cancer & your Hodgkins are 2 different monsters. For my hub; next stop is the lungs; or in other oral cavities. Since I read at message boards; I’ve seen people at stage 1 that have passed by now & here my hub is with stage 4 & the type that spreads; 26 months out of treatment & so far he’s ok. We picked a great team; I’m not sure about excellent because Penn is doing advanced stuff with his type but he refused a 2nd opinion there. I know you’re at an excellent center & if you’re one of the ones with recurrence; I honestly don’t know if there is anything you could have done different. One thing good about the boards is that some people that post have better information then others; they know the better centers for various types; which is true for brain. Outcome very well could do with where you are treated. You can see if there is a better place to be treated; but from what I followed after losing my dad to AML was that Mass was pretty far advanced. I know that MSK was advanced at the time & my dad refused to go for a 2nd opinion.
I gave your Happy Hour info to a mom named Jan & her son Jeff who has brain cancer. I don’t know if either of them participated. I have not heard back from the gal with the 9 year old son. I hate when I get emotionally involved & people do not communicate. I assume that nothing came of her son’s swollen nodes.
Last; I think about you often & I’m glad when I see that you’ve posted. You’re a touch cookie & something tells me that cancer will not end your life; but will make you stronger. YOU have been in charge of it since day one which is more then I can say for a lot of people.
~Cyber hugs
That was supposed to be “you’re a tough cookie”
Do you have a smart phone? It may help to put things in your phone’s calendar to remind you that it needs to be done. It allows you to relax a little but not too much.
Bloodwork really says nothing about lymphoma. The only way to detect a relapse is PET/CT and a biopsy. I was diagnosed at Stage IV and my bloodwork was only slightly anemic – nothing that would indicate the cancer definitively.
Hodgkins also grows slowly so there’s no need to rush as much.
As far as the PET results, they do have the results that day if they need them – and have done it before – but it’s a matter of putting a rush on it which my onc won’t do. It’s frustrating but would be the same at any area hospital.
I have buddies that are survivors of other cancers, plus I’m active on a Hodgkin’s forum. A lot of the moms have sort of adopted me there. Forums are hard though because the people who stick around tend to be the 10% who do relapse and struggle to maintain remission.
It sounds like you’re doing all that you can. Try to schedule the scans the beginning of the week so that you don’t have to go the weekend waiting.
Do you know where Ethan Zohn is being treated? I see a new story about him on People Magazine; pretty sure he’s from your area.
I’m glad you got clean results but I hate the damn cancer bus. I have lived it too long. Oncologist for me tomorrow – how’s my stress level? Don’t ask. I think you just sort of learn to live with the cancer roller coaster. But I’m doing the happy dance for you.
*hugs* Good luck at the oncologist’s office. Hope you get good news as well.
Sounds like you and me have been going through similar recently. Thankfully, I’m all clear too, but I’d love to know when the worry goes away x
A NHL survivor told me it took him 3 or 4 years before he began to feel “normal” again. After the 5 year mark when you stop getting scans? Or maybe that will make it worse… I really don’t know. Wish I did!
I hope this doesn’t come off wrong, but I am so glad I read what I just read. I too am feeling those exact feelings. I was dx with Stage 3B Nod. Sclerosis Hodgkins and ended treatment in Sept. I think about recurrence almost daily. Recurrence is the last thing that I want to happen, but being at the doctor’s so often and knowing exactly what is going on is very comforting. If you would like to talk more please send me an email. I have been looking for some one to talk to. Family and friends are great but it’s not the same because they have not been through the same experience. Wishing you the best of luck!
It sounds like we’re in a similar boat (and almost in the same “end of treatment” class – I ended in mid August!). I will send you an email. 🙂
I can honestly say I know how you feel. I just finished treatment for stage 4 hodgkin lymphoma in January and I am still constantly hyper aware of everything, every little ache, every slightly swollen node etc. I also have an amazing Dr thankfully 🙂
Really hope you are doing well! 😀 Hannah xx
The way you described yourself is the exactttt same way i feel every single day!! I already made a relapse and got cured , i am 20 years old:p! Im just waiting for the 3rd!its all i can think about!can i just ask you a question about the pain after drinking alcohol? Is it immediate after the drinking event or does it happen the 2nd day!! Because whenever i drink the second day i have a smalll pain in my neck lymphnode! Please reply! Thanks and hope u will never have anything related to cancer bother you again!
Hi Karl,
The alcohol pain is immediate – within 10 minutes of even a sip of beer or wine. Trust me – you would know if you had it. It’s very unlikely to develop the Hodgkin’s alcohol pain if you did not have it in your initial diagnosis. I do notice now that my lymph nodes seem super sensitive to caffeine and occasionally alcohol. If I drink more than one cup of coffee in the morning, by afternoon my back is sore. At first it made me nervous, but now I recognize it as part of the new normal. Maybe you’re the same with alcohol?
Yeah its happening everytime ive been testing it a while! Its always a small 20 second pain after drinking alcohol!! Im gon a do a bloodtest tomorrow just so that i can be sure! Thanks ! Wish you all the bestttt!! You have helped a lot !
Relived {a little} that I stumbled across your blog this morning. Husband is almost 7 mos. out of tx. for stage 2b CLHL, Mixed Cellularity. He had a clean PET mid and end of treatment. Last CT (5 mos. ago) showed that the mediastinal nodes had continued to shrink even after chemo was finished. No rads b/c of bleo toxicity. Only missed 1 dose of bleo during the entire 12 tx. High dose steroids tapering over 3 mos. during last month of chemo and 2 mos. following. He’s been feeling fine until a month ago. More fatigue, new basal cell appeared on his leg (just had bx and ready for surgical excision in a few weeks), and cough. That darned cough has returned when he gets up in the morning and showers..then it tapers off during the day. No B symptoms, but then, he only had a few very light night sweats before first diagnosis. Routine CT is scheduled for next week. It can’t come soon enough but we aren’t looking forward to it. He’s almost 60 yrs. old…has been a specimen of health all of his life…now this. Anyhow…I have that “scanxiety” more than he does! I’m a nurse too, which makes it worse. I know enough to make me dangerous and not enough to be logical. Anyhow…this was encouraging to read this morning. Thanks!
Just found your blog post having same fears myself. In 20days I’ll be a year in remission but it doesn’t get easier. I try to be positive but lately I keep panicking. I’m so frightened of relapsing and every chest infection or shortness of breath or any time I don’t feel like drinking alcohol – that’s it, I think it’s back. Same as you I had no symptoms so if it comes back will I know. Some people think I need to move on but I can’t switch my brain off thinking like this. Thanks for your blog, Laura xx
I know how you guys feel, I’m the same, I’ve been in remission since 20th Jan 2012 so just over a year, but I still panic at the thought of it coming back, sometimes I have friends say to me ‘You worry a lot’, which I find odd, because how could I not!
I didn’t have any symptoms either. So if I get really tired or have a cough etc, of I go thinking the worst!
I really hope you guys are good and everything is going well!! Hannah xxx
I dont think its something you can completely forget! Its one of the worst things that can ever happen to you! The best thing you can do is talk with other people facing the same thing,it will ease your thoughts and everytime you think that there might be something, just do a check up, unless the paranoia wont go away:p we beat it once and if ever comes again we beat it again!!!!!! Thats what makes me a bit strong!!
It sounds as if you are still “clinically free of disease”. Good, I hope your health continues, and that you continue to be able to monitor it.
My story: I lost my health insurance after successfully fighting Stage IIB HD eight years ago, but I wasn’t worried: after all, my oncologist told me HD was the one they could cure. I blissfully returned to my life, secure in the knowledge that I could put a “been there, done that ” checkmark next to the Big C, and since I couldn’t do the followup, I didn’t worry. I really don’t know when it started to come back, or if something triggered it, but I remember picking up H1N1 in 2009, then after a bout with a bad cold early in 2010, I started having a weird little cough, which I chalked up to allergies from the crappy carpets at my office. Well, it never went away, and got to be constant. Around the same time, I started having intermittent trouble with my right arm, which I chalked up to carting around computer equipment all the time. The long and short of it was that when I finally had my arm xrayed, they saw a huge tumor in my chest that extended from the left side of my neck over to the right shoulder and down to the center of my chest. I’m now 2 years post-transplant, but I will never again think of myself as cured or out of the woods, and I am currently awaiting a decision from SSA, since the treatment has left me with such long-term cognitive and physical debilities that I can’t earn a living anymore. And I am again without insurance, pending that determination.
So, not to hijack your blog with my tale of woe, but I wanted to emphasize the importance of the followups you are doing, and to tell you that even if you sometimes feel foolish about your vigilance or for worrying about every cough and fever, don’t. At least you’ll catch it early if it comes back, and that’s half the battle.
May God bless you, and keep you well.
Allie E. Morse, this article has settled me for the evening. Going to get my 5mo CT result tomorrow and after more than a month of random pains, aches, headaches & to top it off a bad night sweat a couple of days ago set me into the ‘silently worrying’ stage. Things I’m sure will be fine but it’s nice to know that at 20, I’m not going mad and others have felt it too x
Hi Olivia,
How were your results? I find that the month leading up to a scan brings out all kinds of weird pains, aches, and lumps. Before my last scan, I was certain once again that I was relapsing due to a lump on my collar bone. My oncologist was “not impressed” and the lump – there for a month – was gone the week after a clean scan. Best of luck today!
Alliehttps://thegoodhodgkins.wordpress.com/wp-admin/edit-comments.php?p=355&approved=1#comments-form
Well. It was a relapse. The scar tissue from my first tumour site had invited the bad guys back to party. I had more treatment as an inpatient, some new lines, lost all hair again and spent a month in isolation as result of having to have a stem cell transplant.. BUT I’m in remission again and trying to stay positive and keep my head up and above the water! It’s been a long and windy road fingers crossed all is done. Happy New Year!! X
I personally do not care for the word “remission” it can give false hope. I had always thought it meant a long term “break” but as in my fathers case; was very short term; I believe 3-6 weeks. I personally prefer NED; no evidence of disease. Prayers you stay that way!