iamom | Entries tagged with lymphoma

I should begin with a short Bio 30 review (but be warned that I skipped a lot of that class in grade 12): Lymph nodes are collections of lymphatic tissue. The lymphatic system distributes white blood cells throughout the body. White blood cells (e.g. B-cells, T-cells) are the main building blocks of our immune system. When we get an infection (viral or bacterial), those white blood cells come to the rescue in force.

In my case, it would seem that a lymph node in my nasopharynx became inflamed, for lack of a better term, as a result of fighting acute mono (I think that extra white blood cells were being produced to fight the infection). The inflammation grew to be so large that it prevented drainage of my nasal passages. This caused my sinus cavities to fill, which most likely caused the excruciating headaches I had when this whole thing started.

Step One was the biopsy, and it revealed that I had abnormal lymphocytes, apparently caused by non-Hodgkin's lymphoma. The presence of such a large mass in the nasopharynx also suggested most emphatically that this was some form of lymphoma. In probably more than 99 cases in a hundred, those two circumstances would result in an automatic diagnosis for lymphoma, such as it did for me.

But the first biopsy results were ultimately inconclusive, which automatically postponed treatment and required a second biopsy. And we now know that the second biopsy proved that there was no lymphoma. Therefore, since I tested positive for acute mono in a blood test and since the Epstein-Barr virus was present in the biopsy tissue, it was concluded that the mass must have been caused by acute mono.

The trippiest thing about this is that I now know that I never had any cancer at all! There's a big difference between having been miraculously spared by cancer and never having had it at all. I'm not a cancer survivor, I'm just a diagnosis survivor!

(I'm also thinking of

fey, who just got some bad news about her lymphoma and has yet another challenge to face with her illness. She's got a really strong will.)

B and I got some really exciting news yesterday afternoon. The results from my second biopsy have come back from the US and Hong Kong, and they're unanimous in their opinion that I have acute mono and NOT lymphoma. I repeat, NOT LYMPHOMA! While I'll have to keep following up with regular CT scans over the coming months to verify that everything is on the right track, for now, we're taking this for the great news that it is and officially moving on.

How lovely.

We just logged 4,500 kilometres on a 10-day driving trip to from Halifax to Montreal, Toronto and Georgian Bay (90 minutes NW of Toronto), and we had a fantastic time. Z was a perfect traveller, amusing herself easily in the backseat with her books, toys, and Magna Doodle. She was a perfect doll the whole time.

Also visited my hematologist yesterday to review our current status. I can't remember if I made note here that my initial biopsy was deemed inconclusive by the NIH (i.e. my lymophocytes appear to be abnormal, but they cannot attribute that clearly to lymphoma). They recommended repeating the biopsy, which we've already done, and we hope to hear the results within a couple of weeks. My most recent CT shows that the mass in my nasopharynx has diminished in size without any formal treatment, but that data is not diagnostic by itself. The steroids I took may be responsible for that size reduction.

Anyway, the hematologist quite correctly would not like to begin treatment for lymphoma with such ambiguous lab results, so our plan is to repeat the CTs every 4 weeks to monitor the progress of that mass. If my 2nd biopsy is also deemed inconclusive, then for the short term, I'm going to assume that this mass is anomalous and proceed with my regular life. I'll probably get monthly CTs for a number of months and if the mass doesn't get any bigger or continues to shrink, then maybe this whole experience will just fade into the background.

If that happens, however, I may get written up in a case report and published somewhere, which would be neat. At any rate, I'm still feeling perfectly happy and healthy, so it's not difficult to maintain a positive outlook.

-- finished all painting and reassembling today of the LR/DR
-- upcoming includes financial admin, some carpentry, and a long road trip to Montreal and Toronto with the girls
-- upcoming also includes head/neck CT + repeat biopsy in attempt to attain clear diagnosis of lymphoma subtype

Had a nice party tonight with our friend Jen, of B and

screamingmaniac's childhood acquaintance. Great steaks were spiced by Z (i.e. heavily) and grilled by me (i.e. rare-ly) and then, inspirationally topped with great slices of soft goat cheese by my wife. By the time the first cut was made, the goat cheese had softened into a wonderful paste on top of the steak. Its sharpness also offset beautifully the steak's salt-and-pepper flavour.

Beverages followed a summer theme and included frozen coffee cocktails and a variety of martinis. A refreshing ditty featuring frozen watermelon and vodka was also attempted with no small measure of success. Good times were had by all, but we won't be sad to see that dog go home tomorrow. (This is a dog currently being dog-sat by Jen, for whom we covered her dogsitting responsibilities for the past two nights and which has not, all told, been a pleasurable experience for us or our neighbours (the barking maniac!).)

Yesterday we received a verbal reading of the pathology report from the NIH. Their biopsy results are essentially inconclusive, which could be considered sort of good news, if you like. They don't see definite evidence of the aggressive lymphoma subtype that Halifax originally suspected, but they cannot rule it out. They do see evidence of EBV, which is the virus that causes mono. (We're currently consulting with Infectious Diseases to confirm whether I've ever had mono at some point.) The NIH also recommended that we repeat the biopsy at some point in the near future. So I'm scheduled for a CT scan soon to see if the mass is still there, and if it is, then we'll do another biopsy.

Our next meeting with my hematologist will be on B's birthday, August 30. We're basically in wait mode until that time, but since I'm still feeling so well, there's probably no cause for alarm at the wait. The situation would probably have escalated differently if NIH had confirmed Halifax's suspicions or if I had become symptomatic again, but since neither of those things has occurred, we're just keeping our fingers crossed that I have an extremely anomalous case of mono! :) (Granted, there are still some major strikes against that hypothesis and in favour of lymphoma, but we'll know more in the next few weeks.)

To be honest, some days are better than others. I still have no pain or discomfort, but I do feel kind of lethargic and some days I get a little bit depressed. Nothing severe, just naturally downed feelings arising from the knowledge that I have a serious illness.

Owing to the rarity and aggressiveness of my suspected subtype, I've also become a bit more sober about the seriousness of this. It is possible, though hopefully unlikely, that I could die from this. The specialist did admit, when probed, that if the lymphoma doesn't respond to the treatments, it is possible to die from it.

This is obviously the case with all cancer, but since there is so relatively little data on my subtype, it's impossible to predict how many people will and won't have a positive outcome. My approach remains unchanged, though: I'm proceeding as though I'll be one of the lucky ones who will respond to the treatments.

B also found some indications as to the prevalence of this subtype. This subtype accounts for roughly 15% of all non-Hodgkin's lymphomas, and mine is the fourth most common out of five total categories within this subtype. I don't know how many people have non-Hodgkin's lymphoma though, so I can't estimate how many people in total have this specific subtype.

I also tried to find out exactly how it is that people die from lymphoma, but the doctor and my wife kind of refrained from answering. They told me I was putting the cart before the horse, but I genuinely wanted to know. I'll probe harder for an answer at some later point if it becomes more relevant.

Heh -- it's obvious that the researcher in me will never die. I'm genuinely interested in these kinds of details, even at this strange and stressful time.

I'm robbing part of this entry from an e-mail I just wrote to Jerry.

My dad left this morning and my mom's leaving this afternoon. B's dad John arrives tomorrow night for 2 weeks, and then we'll be free from company for awhile. Two days ago, I subtly suggested a revision to my mom's original itinerary, which saw her depart on Sunday, leaving B and I without a single moment alone together in the absence of family visits.

Yesterday could have gone better. It was my first visit to the hematologist who will be overseeing my treatment going forward. They still haven't been able to determine the subtype of lymphoma I have, and we can't begin treatment until the subtype has been revealed. My biopsies have been sent to the NIH in Bethesda for further analysis, and we expect to receive the results by this time next week.

The reason they can't determine my subtype in Halifax is because it's probably a rare one. But rarity is not necessarily a precursor to a worse outcome. It just means that fewer people have it. My understanding is that many of the rarer lymphomas are treated similarly to the more typical ones anyway: in my case, almost certainly some chemo and some radiation, both of which will likely start within the next couple of weeks.

It's also clear that I'm receiving the best level of care imaginable, and this puts the odds in my favour dramatically. B personally is also a huge asset to my care (and my own sanity!). In addition to being a solid and loving partner to me, she has already begun studying current journal articles about my suspected subtype.

Anyway, I'm still confident that everything will turn out as it should. But of course, how could it anything turn out other than how it should? :) It's one of those essential realities of the universe that we can't avoid.

First, big shout-outs to all friends old and new who gave me their good wishes and prayers from my last entry. I deeply appreciate personal messages like that to let me know how much moral support I have. Thanks again, so much.

I've been symptom- and pain-free for about 4 days now, which is nice. Earlier that was due to some good drugs, but I haven't even had a Tylenol today and I feel great. The steroids and antibiotics have undoubtedly done wonders for the swelling and infection that was causing so much discomfort in my sinuses and throat last week.

My main activity in the past day or two has been dealing with my parents visiting. They've been divorced since I was an infant, and both have gone on to re-marry and such. But they're each here alone without their significant others right now, and they've been spending lots of time alone together this week. Don't get me wrong, there's no chance of them hooking up again, but I mention it only due to its eeriness in seeing them in the same room together so often and so amicable together. It's nice when stuff like this brings people together, you know?

I'll be seeing a hematologist (a blood specialist) on Thursday, and in that meeting, I expect to get some more detailed info about the sub-type of lymphoma that I have, in addition to what treatment options are most likely to be considered. That will be a helpful meeting to get through in order to help me inform my parents more effectively about what we should all expect going forward. My mom in particular has been concocting a lot of crazy schemes in her head about weekly schedules, and assigned tasks to our friends here in town. She's just trying to be helpful, but I'll be drawing the line at her creating a schedule for our friends to come and visit.

Apart from that, everything is pretty much unfolding as it should, I think. No stress or worries at the moment, and I've been pretty relaxed, as per the norm. My understanding is that many lymphomas are considered to be curable forms of cancer, so I have every confidence in a positive outcome. I think the news has [understandably] scared my family more than it has me, to be honest. And I doubt that it's ever easy for a parent to hear that your child might get really ill. I can imagine, through our little Z, what that would feel like.

Last Thursday, I started to feel sick in my throat, and by the end of the evening, I had a bad headache behind my left eye. My sinuses closed up that night and I felt like I had a really bad head cold. Friday was worse, and by Saturday night, the headache was so painful I was in tears. I was gobbling so much Tylenol and Ibuprofen I was feeling nauseous, but nothing helped.

B and I eventually connected some dots Saturday night and realized that a tooth filling I'd had replaced a week earlier may have become infected or absessed, and we called our dentist at home. She put me on Tylenol 3's with codeine along with penicillin and asked me to come in for a check-up and possible root canal Monday morning. I was bummed, but the T3's helped a bit with the pain and I was glad we'd found the problem.

But unfortunately, that wasn't the problem. The dentist ruled out absess by X-ray and recommended that I visit my family doc to investigate what she suspected was a bad sinus infection. My wife did one better than that and got me in to see an ENT (Ears Nose and Throat) specialist that she went to med school with, and he scoped me in his clinic that afternoon. After seeing something back there that looked wrong, he took 4 biopsies of a mass at the back of my throat and brought me down for a head and neck CT.

B's new position at the other hospital across the harbour still provides access to the radiology films done in Halifax, so later that afternoon, she checked out my CT results, and after confirming with the ENT doc I'd seen that day, she came home to me that night with some bad news. It was confirmed yesterday when the final pathology from the biopsies came in: I have non-Hodgkin's lymphoma, a type of cancer.

I don't know a lot about this yet, other than it's not surgically treatable and that it frequently responds well to chemotherapy and/or radiation. One of my old good friends

fey has just spent the past couple of years dealing with this, but I haven't kept in touch with her for awhile and don't know how she's doing. I had a full-body CT done this morning though, and will have a nuclear medicine scan done early next week, so probably by this time next week we'll have a full handle on exactly what type of lymphoma I have and what my treatment options will be. At the very least, I'm expecting to do some chemo for the next several months and our lives will be shaken upside down for awhile.

I guess I won't be worrying too much about finding or starting new work for awhile now, but I also expect that I'll be writing some more in here to keep track of my progress and just keep in touch. I'm still in good spirits right now, keeping up a positive attitude and all that jazz, just waiting to see what the next week and months will bring. They probably won't bring my death though, so I'm not too worried about what else will get tossed my way. I'm not ready to leave my girls yet though (shit, I'm only 31 anyway!), so I'm ready to take on whatever else comes along.

Shout out to y'all. Big loves to everyone.

Dustin