Writing Down the Bones: My Non-Hodgkin's Lymphoma Diagnosis


Sooo...I'm going to share an excerpt from my cancer memoir. It's kind of diving right into the gory diagnosis/hospital stage but let's be honest, it's the part people who read cancer memoirs tend to be most interested in? I don't know! This month marks 11 years since I finished cancer treatment (I had one month of radiotherapy two months after I finished six months of chemo), which hardly seems possible. Sometimes it feels like a lifetime ago, other times I can remember things with a whiff of a strange scent or clanging of a bell that reminds me of the eternal chemo beeping when the medicine runs out (it goes ding ding DING! ding ding DING! Am I right fellow chemo-ites?). Well...this is all quite rough draft I know, so apologies, but I think I'm one of those people who just needed to write the stuff down just to get it out and then couldn't bear to look at it again. Anyway....oops, there it is. 


Diagnosis:

It’s all getting a bit farcical now, wouldn’t you say? So, to recap: Two weeks in and out of hospital, two biopsies and many milligrams of steroids which have made me look even more like a blowfish on (Ironically I was put on steroids to reduce the swelling in my chest caused by my vena cava artery being blocked by the tumour…oh that’s another fun medical story, tbc), and we are still in the dark. It’s all a bit blurry. I was beginning the morphine back then for post-op pain as well, which doesn’t help the brain cells.

After biopsy two is a bust, my surgeon takes me into a private room. For once no one else is around to buffer me. It is the first time I have spoken to a doctor alone since it all turned black. It feels weird, to say the least. For one thing he is this tall, handsome, blue-eyed pillar of health, and it feels weird having my life in his hands. He flies in to Aberdeen every week from Amsterdam to operate on sickly types like me. I wish he was older, and not so…relatable. He is so healthy and alive, he looks like he skis and has steamy affairs with stewardesses (I kind of wish he was less Hawkeye/Doug Ross, more Dr. Mark Greene (off of E.R.) if you know what I mean...too old a reference? Ok..less McDreamy/McSteamy...but erm, no, none of the Grey's Anatomy doctors would really be top of my list either!). I digress....Whereas I am feeling like more and more of a sinking ship. It makes it all seem so real. Nothing in life can prepare you for this feeling – age and wisdom may help, but in that moment, I felt like an infinitesimally small child, with nothing to cling onto but the edge of the crumbling cliff of what was once real.

He tells me they are going to have to go for broke this time, opening up my chest completely (like in open heart surgery). He will try to remove as much as possible of the tumour. It’s tricky though, as it is wrapped around my superior vena cava. This is a major artery into my heart and if it got severed would involve another operation to install a sort of splint there. Trying to absorb all of this while remaining calm is not easy. I make him promise to get as much of it out as he can. He reassures me greatly, as much as he can anyway, while also emphasising this is a much more serious operation than the other two and I will have to be in intensive care when I come out of it.

The poor surgeon, I seem to remember even then feeling sorry for him, he was so obviously distressed at not being able to give me any good news. I don’t think they usually have that much repeated contact with one patient, which is strange as they are the ones you never forget from that intense period of pre-diagnosis. After they figure out what is wrong with you, you tend never to see them again.

So on and on, finally, number three. Now we are talking surgical big time, event time. Mom flies back in, in-laws come down for the day. I’m so popular, not to mention I keep getting my own room, which is unheard of on the NHS! I have been in the ward for heart patients mainly, as my disease is located in my chest that is where they put me since I am still a Nancy Drew mystery – "The Girl With the Mysterious Mass!"

The ward  is populated by mainly older patients, mainly men, which is why I get my own room. I don’t belong there really; I’m still in limbo, waiting to be assigned to the right hospital wing. Christmas is coming, we’re now into December. The hospital decorations are not exactly cheering, rather worn and tired looking, like me. My third time checking in I feel like an old pro at this (third week in succession, surgeries always on a Tuesday). I bring my own pillow, and nice new pyjamas. I somehow convinced myself each hospital visit was like a little mini-spa break, armed with an arsenal of creature comforts I felt somehow momentarily impermeable to the realities of what was happening.

I’ve been shopping, did I mention? Oh yes, after being told the extent of my next hospital stint (mild risk of death, not to worry), I decide that I deserve to treat myself. I make a list of all of the potions and STUFF I want to possess, just in case I never get another chance to. I deserve it, finally the “I’m worth it” phrase has meaning, and after all, this could be it! Debenhams beauty counter, watch out!  It is hard to describe, looking back on it I can’t believe how I reacted, but then again that is the main thing with cancer, you never know how you’re going to react. Maybe I thought if I did something incredibly stupid like buy a bunch of luxury crap it would keep me alive, to hold me to account?

But somehow I found my verve and lust dampened when I actually venture into the city centre. I feel like a zombie, wandering from shop to shop, thinking it could be my last day out. Christmas carols have never sounded more surreal. Simply having a wonderful Christmas time…ding dong ding dong! Plus the morphine is making me sweat, not to mention the large tumour inside of me is actually making it a bit burdensome to breathe. Is this really happening? I feel outside of everything, including myself. I am on a life raft, drifting aimlessly towards a waterfall. I am powerless, and I am infinitely blind to what lies ahead.

I remember little before the surgery. I think we had to wait longer that day as the previous surgery ran long. I think my mom went away for a while before they took me. The same way she wouldn’t come into the airport with me when I left for Scotland. I don’t blame her really, who can deal with this?

Then down again in the elevator, in my flimsy gown beneath a blanket. Elevator packed; try not to make eye contact with any of the people staring. Anyhow I doubt any of them realise this is my big moment. They probably see a young woman and think I’ve got some minor engagement with an itty bitty scalpel.

Then the waiting room, where they take away my asthma inhaler in a plastic bag (they insist on transporting me with it). I don’t have my contacts or glasses so everything is very blurry. If I get through this I am definitely having laser eye surgery. Then I am wheeled into the next little room where the nice man with the needle puts me to sleep. I’ve dealt with several anesthesiologists, and they have without exception all been the kindest, most calming people. It must be a prerequisite. The only minor freak-out I had was the second biopsy, when they brought me into the operating theatre before knocking me out. This I did not like. Knowing that in that room, with the giant scary sci-fi lights, I would soon be under the knife was not enjoyable. You never see your doctor before the surgery, which is the way I like it. You can almost relax as they knock you under….

Wake up, back in the surgical waiting room. Rows of patients stacked together in our cots; we are an assembly line of physical failure, I cannot help but think. There is “us” and there is “them”. I feel an excruciating, burning pain, yet somehow it is also distant. Apparently I swear up quite a blue storm until they give me more morphine. It seems to take forever. This is vague. I am so tired. Sleep.

I wake up in intensive care. My in-laws are there, smiling at me, giving me thumbs ups, etc. I must have really done something, I think blurrily. I am irritated at their cheeriness. Has no one told them I am very ill? Ouch, my chest is on fire. I am attached to lots of things. I am used to having chest tubes and things by this point, but now I’ve got the heart monitor beeping away as well. Oh and a catheter, but I can’t feel that, thank god. I do feel like I constantly have to pee though. My husband and mother appear. Everyone is telling me I’m doing great. I feel like I’m in a science lab. The nurses are stationed in the middle of the room, just a few feet away from my bed. There are a couple of other people in there with me. Anytime I buzz the call button I am seen to immediately. I could get used to this after the more harried ward staff/patient experience. Also I have a morphine drip, which was very thoughtful of them, must send a thank you card….so sleepy again….just a quick doze….

Now it is dark, I can tell even though the lights are still on in the room. Something is happening. There are white coats everywhere around the man in the bed beside me. Nurses are running in and out. They pull the curtain around his bed. Not much time passes before they all seem to settle. The man has died. He looked very old. I did not recognize him from the ward. I feel strange for being there, do not want to disturb any of the nurses with any minor problems I might be having. I fall back asleep; the morphine has no fear of dark angels coming twice in the night. When I wake up he is gone. I ask one of the nurses what happened but she was not on the night shift. I spent the last few moments of someone’s life a few feet away from him but will never know who he was. I am glad it was not me, I cannot help but think. 


I was scheduled for eight rounds of CHOP chemo + monoclonal antibodies. One round every three weeks, lasting in total just under six months. I had my first treatment about a week after my diagnosis. Oh God that, I haven’t even gone there yet have I? Sorry, I will blame it on “chemo brain”? (a mysterious, unexplained, yet common side effect of chemo is that your brain turns to fuzz, vocabulary starts to evaporate, sometimes I think it still lingers).

So, backtrack. After a night in intensive care, I was transferred back to the ward. Within a couple of days, after three biopsies (the last being more of a carve up really) and three weeks in and out of hospital, there was finally going to be a resolution. More like a beginning – my patience had worn pretty thin if I’m honest. I was growing tired of young nurses, aids not much younger than me, not knowing how to deal with me, giggling with the discomfort of a young, sick girl not all that different from them. How dare they be near me, with their healthy bodies and carefree minds? After the last surgery I didn’t go to the bathroom for two days, I couldn’t get to the toilet without assistance and could not bring myself to go in the port o’potty they placed in the middle of the room one night. Dignity must be clung to, futile as it may seem. My arms were now swollen from the huge amounts of steroids I had been on to reduce the swelling in my chest, ironically. And the morphine drip had been replaced by pills, which did not help the pain nearly so much.  
   
So I cannot remember if it was my surgeon who told me I had Non-Hodgkins Lymphoma. Yes, it was - now I remember, and there was a kind of odd feeling of relief, even knowing as little as I did. Treatable cancer is always a win in bizarre situations like this. It wasn’t explained in full, treatment wise, until I met my consultant. I remember yet again being embarrassed at crying in front of a doctor on our first meeting. My first impression skills have been utterly decimated by this cancer bitch. No witty replies here, thank you very much. I feel lobotomized, incapable of any expression besides grunts of the slightest comprehension.

My mom and husband were in the room. I recall the surreal feeling that I wished I wasn’t wearing pyjamas at this, the most seminal moment in my life. Would this doctor take me seriously, having the first impression of a sniffling girl in red flannel? Sounds ludicrous I know, but rational thought is not a given it seems even in moments of crisis.

Anyway my doctor, and a young, blonde nurse came in to give me my diagnosis and first ever consultation as an Official Cancer Patient. After everything that had gone up until this point, you might think I would have been well prepared for the moment. But somehow the capacity for surprise at your own mortality becomes infinite. I cried perhaps the entire time he was talking to me, doing my best not to, but nevertheless hardly an image of controlled dignified resignation. I so would not have a good t.v. movie about my cancer. Why are the movie girls always so stoic? How do they do it? Did they not just hear that they have CANCER?!

It’s almost like I had felt a reprieve would still come somehow, despite all of the ominous indications otherwise. This was the first time a medical professional had looked me in the eye, unwavering, and told the absolute truth of what was happening to me, and the rather unappealing course of action that needed to happen if I wanted to live.

My oncologist is cool, and I mean that in the nicest way. He’s not “hip” cool, he is calm, he exudes calm and control in such a way that even as he is delivering the worst possible news you somehow are forced to absorb it even as every part of you is crying out to run away and hide, hide from the cancer, it will forget you are there!

He gave me the facts pretty unflinchingly. He was able to look me in the eye and tell me it could kill me, yet he confidently assured me that the success of my chemotherapy could be complete, especially given my age and otherwise glowing health. He told me he didn’t like to give out statistics, as I’m sure everyone wants to know that first thing, because he didn’t see the point in that, didn’t see how it could help you at any rate. (Note to self: statistics must rot, look them up immediately….after some cloudiness on the net, find for me, my stage, etc., roughly 50-60% chance of survival after two years. Two year survival rates are all the rage with top end cancers, you see, you should be so lucky!).




Classificationof Non-Hodgkin Lymphoma*
The classification of non-Hodgkin lymphoma can be quite confusing (even for many doctors) because there are so many types (around 30) and because several different systems of classification have been developed. The most recent system is the Revised European-American Lymphoma/World Health Organization (REAL/WHO) classification.
The reason for the changes in classification is that the old systems of classifying lymphomas by their appearance alone no longer worked. Modern science had discovered many chemical and genetic characteristics that identified lymphoma cells better than did their appearance. As we learn more about genes in humans, the genetic changes in lymphomas will play a larger role in classification, and new systems will be developed once again.
REAL/WHO system: The REAL/WHO system not only uses the appearance of the lymphoma cells for classification but also uses chromosome features of the cells and their chemistry. The chemistry is mainly evaluated by looking for certain chemicals on the surface of the cells. This overview classifies the most common lymphomas according to whether they are B-cell or T-cell lymphomas and lists them by how common they are.

Primary mediastinal B-cell lymphoma: This type accounts for about 2% of all lymphomas. The cells are large. This lymphoma starts in the mediastinum (the area around the heart and behind the chest bone). It usually is localized at the beginning. It rarely involves the bone marrow. It can cause trouble breathing because it often presses into the air passages leading into the lung. It can also block the superior vena cava (the large vein that returns blood to the heart from the arms and head). This can cause the arms and face to swell. About two thirds of people with this lymphoma are women. Most are young -- in their 30s. It is a fast growing lymphoma but it is treatable. About half of patients can be cured. Genetic studies have shown that this type of lymphoma is closely related to Hodgkin disease.



Again, my doctor has blue eyes. It feels like the universe is sending me tiny little smoke signals of hope.
Having boring old muddy green eyes myself, I have always envied blue eyes, and believe looking into them
while someone tells you you might well be done for gives a glimmer of hope that no other colour could
provide. Blue eyes are deep pools, they are liquid, they are oceanic, full of life. I vow to trust blue eyes from now on. Dr. C was not messing around; he wanted me to begin chemotherapy within the week. Give a girl a break? No, not for a long while at least.






.....so that's enough for today I think. Thanks for reading. xo



*via American Cancer Society at  www.cancer.org

4 comments

  1. wow, this was written really well and also thanks for sharing this. i don't know much about any cancers or hodgkins... only from what i glean from the old files at work that i reinventory. i hate doing those because if it's a young person on there i know it was hodgkins and the odds of making it were slim (1950's and 1960's, they were still trying to figure things out) , so it's just so so refreshing to see a modern version with a better ending!

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    1. Thanks for reading Heather :-) It's weird because right before I got sick I was working admin for the health services here, so I was sued to having a nose into other people's medical records (to the extent that my job required, I had to record emergency visits and organ donation updates and other weird stuff). I never imagined in a brief time I'd be on the other end,I do consider myself very lucky to have gotten sick when I did and where I did in terms of the treatment I received. xo

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  2. Not easy to read this very powerful and truthful account. I admire you so much Steff for all you've been through.and for being brave enough to write about it.

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    1. Aw thanks Elinor. I wrote it quite awhile ago now, it's odd re-living it in print but I'm glad I did get it down while I remembered. xo

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