Playing Catch Up...

Penn State Hershey Cancer Institute on a blustery winter day...

So, my last post was October of 2009.  Things were looking good and I neglected to keep this blog updated simply because I'd been feeling wonderful and really didn't have anything to write about.  I did have an appointment with my oncologist at Hershey in December 2010 complete with a PET/CT and blood work, and everything looked great.  Cancer is stable!  Doc gave me the OK to pursue my marathon training, which I did with gusto.

I might add that the oncologist that I had been seeing, Dr. J., is no longer my doc.  The clinic where he worked mysteriously closed up and moved away or went out of business....so I transferred all my files and info to the Penn State Hershey Cancer Institute, where I'd been seen in 1996 when my lymphoma journey actually began.  I feel comfortable here, though it's a 1.5 hour (60+ mile) drive for us.

Here I sit in a massive chair getting ready for the PET/CT...I felt like a little kid in that chair!

 I saw my oncologist once again in June of 2011, and my blood work looked good.  He wanted me to have another PET/CT at that time, but I declined....why?!  I'd just had one in December!  I left the appointment feeling good....I'd run a half marathon (13.1 miles) in April, and a  full 26.2 marathon in May, plus several shorter races and was actually winning my age group!  Life is good!  What can go wrong?

Happy Anniversary??

So today, October 1, 2009, marks my one year anniversary of being diagnosed with follicular non-Hodgkin's lymphoma, grade 1-2, stage 4. I wonder, is this an anniversary that should be celebrated? Perhaps I should simply celebrate the fact that I'm asymptomatic and "healthy" for the most part...

Cancer--My New Full-Time Job

I thought I was a busy person in my BC (before cancer) days, but honestly, cancer is a full-time job for those of us taking a proactive approach to our cancer treatment. I spend so much of my time these days doing research via the internet, reading books relating to cancer treatments and nutrition, planning and cooking healthy meals, concentrating on getting proper exercise and vitamin D (either via a vitamin D lamp or natural sunshine), relaxing, getting proper sleep, going to Dr. appointments, getting blood work done, getting PET/CT scans, working in my garden to grow even more organic produce than I did previously...the list goes on. Just preparing my breakfast takes approximately 20 minutes out of every single morning. Gone are the days of dumping cereal into a bowl and sloshing milk over it.

As mentioned in my previous post, I had a PET/CT scan performed on May 2. I'm horrible at explaining technical things, but Patti over at Mom's Story
gives a wonderful explanation of it all. If you want to know the hows, whys and whats of a PET/CT, check out her post.

Anyway, my blood work, according to Dr. J, looks great. He also stated that my PET/CT looks good. The PET/CT report states that there's "marked increased activity within the right lower pelvis which appears to correspond to the right ovary. This could be related to a recently ruptured follicle or follicular activity. There is otherwise no abnormal activity from vertex to midthighs to suggest recurrent or residual lymphoma. A right axillary lymph node and several mesenteric lymph nodes are all relatively stable..." This is all good news, however a repeat PET/CT is recommended in 6 months time "as a precautionary measure" to keep an eye on that activity in the lower right pelvis.

The friend in California with melanoma that I mentioned in my last post sadly died on May 10. He was an amazing person.

Take care of yourselves folks!

Reality Check

Some days I find it hard to believe that I'm "sick"...my energy levels are right up there, I feel great, as I've mentioned in other posts. In the back of my mind I find myself thinking things like, "I'm not really sick, the docs must have made some kind of mistake".

But, the grim reality of it all sets in when yet another needle goes into a vein for some more testing. I had blood work done on Friday (May 1), and my second PET scan was performed at 8:00 a.m. yesterday. The test itself is no big deal, but it IS creepy thinking that something radioactive is being injected into my body. I'm not sure I like that.

I'll know the results of both tests when I visit my oncologist, Dr. J. in a couple weeks.

I just got word today that an acquaintance in California has taken a turn for the worse and basically has been sent home from the hospital to die. He was diagnosed with melanoma last year, and things just got progressively worse at a rapid rate. We on the Turbo! mailing list refer to him as "Uncle Bob". He'll be in our thoughts and prayers.

Testing, Testing....

So my recent vitamin D test came back much improved, though not quite up to "normal" standards. My 25-OH result is now 42 ng/ml, and previously it had been 23 ng/ml. Optimal levels are between 45 and 52, so I'm almost there. I've been supplementing with 2,000 IU of vitamin D daily, in addition to 5 minutes in front of the vitamin D lamp every-other day, though now that I'm outside most of the day working in the garden and soaking up the rays, I've pretty much laid off using the lamp.

I had an appointment with Dr. P (my "alternative oncologist" who's been tracking my vitamin D levels) on April 8 to discuss my recent vitamin D test results and any other questions I might have. Dr. P was impressed with my recent weight loss due to my healthier eating habits...he commented multiple times on how good I looked! Chalk one up to a mostly vegetarian, sugar-free, trans-fat-free, wheat-free diet! I do FEEL great too.

Tomorrow I'm getting some routine blood work done (approximately 10 vials if it's anything like the last ones I've had done), and Saturday a.m. is another PET scan. I'm fairly confident that the scan will be good. And if it's not, well, I'll be very surprised!

While talking with Dr. P, he suggested I get a methyl B-12 shot, which I did there while at the office. He thought I might notice an improvement in my energy levels, but I didn't, really, so I'm wondering if I really need them. I've been feeling fairly energetic lately as it is.

I thank God daily for my new-found outlook on life...I feel more alive now that I've got cancer than I did in my pre-C days, partly due to the fact that I've been taking better care of myself, and partly because I view each day as a gift. And I think I'm even a little more playful..."Never take life too seriously...no one gets out alive anyway".

Drink Up!

My homemade Concord Grape wine--now I don't feel so bad about drinking it!

The following recently was published on one of my lymphoma mailing lists...good news for the wine drinkers amongst us!
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Drinking wine may increase survival among non-Hodgkin's lymphoma patients

April 21st, 2009

Pre-diagnostic wine consumption may reduce the risk of
death and relapse among non-Hodgkin's lymphoma patients, according to an
epidemiology study presented at the American Association for Cancer
Research 100th Annual Meeting 2009.

Xuesong Han, the first author of the abstract and a doctoral candidate at
the Yale School of Public Health, said their findings would need to be
replicated before any public health recommendations are made, but the
evidence is becoming clearer that moderate consumption of wine has
numerous benefits.

"This conclusion is controversial, because excessive drinking has a
negative social and health impact, and it is difficult to define what is
moderate and what is excessive," said Han. "However, we are continually
seeing a link between wine and positive outcomes in many cancers."

This study was the first to examine the link among patients with
non-Hodgkin's lymphoma. Han and her colleagues analyzed data about 546
women with non-Hodgkin's lymphoma.

They found that those who drank wine had a 76 percent five-year survival
compared with 68 percent for non-wine drinkers. Further research found
five-year, disease-free survival was 70 percent among those who drank wine
compared with 65 percent among non-wine drinkers.

Beer and/or liquor consumption did not show a benefit.

The study team at Yale also looked at subgroups of lymphoma patients, and
found the strongest link between wine consumption and favorable outcomes
among patients with diffuse large B-cell lymphoma. These patients had a 40
to 50 percent reduced risk of death, relapse or secondary cancer.

Researchers then conducted an analysis to examine the effect of wine
consumption among those who had drunk wine for at least the previous 25
years before diagnosis. Non-Hodgkin's lymphoma patients who had been
drinking wine for at least this long had a 25 to 35 percent reduced risk
of death, relapse or secondary cancer.

Those patients with large B-cell lymphoma had about 60 percent reduced
risk of death, relapse or secondary cancer if they had been drinking wine
for at least the previous 25 years before diagnosis.

"It is clear that lifestyle factors like alcohol can affect outcome," said
Han.

Source: American Association for Cancer Research

I've Got Cancer....How Can I Feel So Good?

It is amazing, but I feel better now than I have in years! I'm not sure why. Perhaps it's because I've changed my diet so drastically; I've become a "pescetarian" (vegetarian, though I will occasionally eat fish/seafood), I've cut all sugar out of my diet, cut out transfats, am eating a "low amylose" diet which is designed to not raise my blood glucose levels, and I'm taking a host of supplements which I'll describe in another entry. My vitamin D levels are hopefully back within the normal range. I had a blood test done on March 13, two weeks ago today, so I should be getting the results back soon as to whether or not my D levels are back up by now. Hopefully supplementing with 2,000 IU's daily and using the vitamin D lamp will prevail.

Sometimes I feel a little guilty that I'm feeling so good! But I know my days are numbered in that regard, and that at some point my lymphoma will "transform" and become aggressive, then it'll be my turn to go the chemo route. Hopefully that time is a long, long way off. It is kind of creepy knowing that I've got an incurable cancer floating around in my body. Sometimes I envy cancer patients that have one type of cancer or another that can just be cut out of the body and they're done with it. No more cancer...it's all gone. I wonder if they continue to live in fear?