Mystery of my past health

I got a very interesting copy of 2003 test results which had the lymphoma word in it. I remember the awful cramps I used to get fairly regularly in the middle of the night that lasted for an hour. I have no idea if it was related or what happened to them. There are so many mysteries. This is what I wrote in my end of the year summary:

·       I had 3 ultrasounds and 3 CT scans (one during a visit to the Harborview Hospital ER after a night of severe abdominal pains, probably caused by a kidney stone) for “enlarged abdominal lymph nodes”. Verdict: I don’t have lymphoma. So what is causing the enlarged nodes? Nobody knows yet.

So did the doctors just give up on finding out or did they feel they had done their job by eliminating lymphoma...and then were they wrong? Will I ever know? I want my oncologist (still feels strange to say "my") to hazard a guess. But if it had been lymphoma would that mean I've had it for at least 10 years and it truly is "indolent" which is what we already know about it.

Getting HealthyER

After reading most of a very long article, I went to a health food store and spent a lot of money buying what the author and survivor of lymphoma recommended. Red palm oil but I'm not sure what to do with it. I didn't get the Kelp capsules--can I just eat those seaweed snacks Trader Joe's makes instead? They are pretty tasty!
There are the unpronounceables: Resveratrol? Astaxanthin? but only from non-farmed salmon! It gets very complicated, getting healthy (healthier). I have to educate myself, apparently.

Stages of grief

FOLLICULAR LYMPHOMA: Median survival is around 10 
years, but the range is wide, from less than one year, to more than 20 years. Some patients may never need treatment. The overall survival rate at 5 years is 72-77%.

It's only been a week, not even, since my diagnosis (and coincidentally since I got my new Google Nexus 4 phone) and it still seems unreal. Not as in, how can this be happening to me, but more like, maybe they made a mistake. Okay, those old five Kübler-Ross stages of grief, denial, etc. I'm definitely at denial:

Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.

And then my woo woo friend C will tell me that Louise Hay says it means I'm missing the joy of life or something like that. And I say, grrrr, well, gimme some, then! but why give me cancer.

I'm in good company, I know...as people are wont to remind me. And it does rather amaze me, how many people have cancer.

And still no word from my father or younger brother since my email telling them my news.

Perhaps I'm rather fatalistic, though you know I'll try my damnedest to keep healthy.

Alternative therapy

It's been only 6 days and I have already had so many suggestions for treatment. I have 3 naturopaths to consult with. I have a suggestion of a kind of qigong (is a practice of aligning breath, movement, and awareness for exercise, healing, and meditation). I have the number of a friend's niece who has had this disease. I have many articles from Lymphoma Survival website, getting into obscure topics such as epigenetics (the study of changes in gene expression or cellular phenotype, caused by mechanisms other than changes in the underlying DNA sequence – hence the name epi- (Greek: επί- over, above, outer) -genetics, some of which are heritable) that require patience and perseverance to understand.
So how to sort through it all? I guess I have to go with what I instinctively feel is right for me. Easy to say but how else to proceed? I like the article that says doing nothing, the "wait and watch" the oncologist talked about, is "benign neglect".

How I found out

2012
Ultrasound was in September

This year has been the tough time:

1/16 blood work (slightly low WBC)

1/18 consult with a urologist because I had a routine ultrasound for fibroids and I complained about a hardness above the waist; they found cysts in my kidneys so they were worried about AMLs (angiomyolipomas) which can in rare cases present a risk for tuberous sclerosis (Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin). Somewhere in that month they sent me to the U of WA Center for Genetic Disorders, Dr Sybert, who examined me naked along with 2 other women in a black light for skin abnormalities. Great fun it wasn't but not scary since I seemed at so little risk.

1/31 CT scan

3/19 2nd abdominal CT scan which again showed enlarged lymph nodes so they did a needle biopsy and I had nausea from the fentanyl so it was a very long day.

PET scan is scheduled for end of April. This will determine if I have stage 3 (above the diaphragm as well as below the diaphragm). Stage 4, bone marrow involvement, will not be determined now.

Diagnosis

Non-Hodgkin's Lymphoma
Staging: B-cell neoplasms: follicular lymphoma, Type: nodular lymphoma, Nodal or lymphatic site, paraaortic adenopathy 2.5 cm 
(1 in.), mesenteric adenopathy, Extranodal or extralymphatic site: none, Symptoms: none, Transformation: no.

A diagnosis. What a difference a diagnosis (day--Dinah Washington song, "24 little hours") makes! One day you are healthy with an ominous feeling in the back of your mind and the next day you are sick, or in my case, potentially sick.

But what if I didn't know? Would it be better? easier? Yes, now I can be proactive which conventional medicine tells us doesn't help but maybe doesn't hurt.

So it's amazing how different my friends and family react. "So what does that mean?" asked a coworker. Now that's honest and to the point. The friend who wrote a short poem about rainbows and tears streaming down her face was a bit too much. I don't need histrionics but yes, she means well and probably doesn't know much about NHL before she reacted. I'm not going to die in 4 months like my mother (pancreatic cancer), I feel like saying, but don't. Or at least I don't think I am...

So now I have this label and what do I do with it? Feel sorry for myself? blame every ache and pain on it? Join this and that virtual community to get "support"?

From Illness as Metaphor by Susan Sontag: Cancer has now become the predominant disease metaphor in our culture. Cancer is considered a disease of repression, or inhibited passion. The cancer sufferer characteristically suppresses emotion, which after many years emerges from the unconscious self as malignant growth.

I want to read that and also Bright-Sided: How the relentless promotion of positive thinking has undermined America by Barbara Ehrenreich.

And then there are the close friends who admire me. For real? What is the alternative, weeping and moaning? Poor me! Yes, I do feel some of that but maybe it all seems too unreal right now for any weeping violins. Or at least not until I'm sick, IF I ever get sick. It's not inevitable with NHL! Oh, more acronyms, glorious!

Though there is something about the attention that part of me likes, as cavalier as I can be about the diagnosis. What's that about? I guess it's obvious enough, we all need attention, even if it's suspect.