Friday, March 27, 2009

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's all gone. I wonder if they continue to live in fear?

Monday, March 9, 2009

My Lymphoma Timeline--August 2008 to March 2009

Since I've been so lax in keeping this journal up-to-date, I'll give a brief timeline of my current fNHL diagnosis:

MID AUGUST 2008: I notice a hard bump just behind my left ear. It's about the size of a pea, very hard, non-movable, and doesn't hurt...this is my first clue that I've got some sort of lymphoma. After a few days of feeling the lump and realizing that it's not going away, I call my family doctor for an appointment.

August 20: I visit my family doctor, Dr. P, and she prescribes an antibiotic just to make sure the enlarged lymph node isn't caused by some sort of infection. She is optimistic and says it's probably nothing to worry about, but given my past history with atypical follicular lymphoid hyperplasia, thinks we need to proceed with caution.

SEPTEMBER 4: I return to Dr. P's office for a check-up. The lymph node is still enlarged, and in fact a second lymph node has popped up right beside the first one. Dr. P says she will schedule an appointment with a surgeon, Dr. C, who performed my previous lymph node biopsy. An appointment is made for the end of September. I'm freaked because I'm thinking "what's taking so long...this is probably cancer! Let's get it out, NOW!". Several days later I call Dr. C's office to try and schedule an earlier appointment. After several days, I succeed in getting an appointment for Sept. 17.

SEPTEMBER 12: I find a 3rd enlarged lymph node, albeit a very tiny one, on the right side of my neck.

SEPTEMBER 17: I go see Dr. C. He, too, is optimistic and states this is probably just an infection (even though antibiotics didn't phase it and only seemed to propagate more nodes, which of course it didn't). He doesn't think the small node on the right side of my neck is in any way related to the ones behind my left ear. He says he'll perform a needle biopsy next week.

SEPTEMBER 24: Dr. C's office and I get all prepped for the "needle biopsy". Area is cleaned and numbed, lots and lots of something going on up there and I suspect he's doing more than a needle biopsy. He did, in fact, remove the entire lymph node...change of plans apparently, or I simply misunderstood the procedure from the beginning. Anyway, he showed me the lymph node which looked like a red Jelly Belly jelly bean. He stitched me up with 5 stitches and I made an appointment to come back next week.

OCTOBER 1: Visit with Dr. C to get my biopsy results: follicular non-Hodgkin's Lymphoma. Dr. C says they'll need to start chemo ASAP and has me sign a paper allowing him to implant a port so I don't have to come back in to the office later to do that paperwork. He makes arrangements for me to visit an oncologist in Shamokin Dam, a Dr. J. In the meantime, I'll need to get a host of tests done, which Dr. C's office arranges. I also insist on a visit with my former oncologist at Hershey Medical Center, Dr. H.

OCTOBER 7: My 50th birthday, and a CT scan to the head, chest and abdomen.

OCTOBER 8: I join the Lymphoma Survival group at

OCTOBER 9: My first appointment with Dr. J, an oncologist specializing in hematology. Dr. J checks my scan results and biopsy report and confirms that I have follicular non-Hodgkin's Lymphoma. He says my prognosis is very good considering my lack of symptoms, my age and my scan results, and tentatively says that I'm a grade 1-2, stage 1, which is good news as far as cancer news goes. He says he's planning a "curative" approach to my cancer, but this confuses me because I've read that this cancer is NOT curable. I've come to learn that doctors call it a "cure" if the patient survives beyond 5 or 7 years, or something along those lines. Dr. J's office makes arrangements for my PET scan at Evangelical Hospital in Lewisburg. Dr. J suggests chemo.

OCTOBER 13-17--we take a vacation to Maine with our youngest son, Tyler, and our dog, Toodie. I've begun practicing many of the "targeted natural strategies" I've read about on the Lymphoma Survival website.

OCTOBER 18: PET scan at Evan. The technician is able to give me a CD of the scan to take to Dr. H at Hershey Medical Center.

OCTOBER 20: My appointment with Dr. H at Hershey. Dr. H is as nice as ever and a real joy. He confirms the diagnosis, and looks at the PET scan CD and declares he sees nothing out of the ordinary, or anything to be concerned with. He suggests chemo, but he said, "we'll be gentle". He's going to try and get in touch with Dr. J and discuss my case over the phone. He's also going to present my case before their "tumor board" and get their opinion.

OCTOBER 22: Another appointment with Dr. J. Chemo is again discussed. This is freaking me out.

OCTOBER 23: I have an appointment today with Dr. K, a radiation oncologist and a colleague of Dr. J and in the same office. Dr. J says I'll need chemo, then radiation, and Dr. K would like to see me before any treatments begin so he has something to compare with post-treatment.

OCTOBER 28: Bone marrow biopsy today performed by Dr. J. I told them of my horrific time with the bone marrow biopsy at Hershey in '96. They didn't seem concerned because they said they give all their patients Demerol and Ativan, and said I probably wouldn't care WHAT they were doing to me. Nurse started an IV and gave me the good stuff. Shortly thereafter I started feeling kind of sick, sweated BUCKETS and seemed to have just come out of a swimming pool I was so wet. My pulse dropped to 47, my blood pressure dropped to 74/ I needed more saline to get my BP back up to where it was suppose to be before Dr. J could even begin the procedure. The drugs did NOTHING for me other than cause this reaction. I was coherent the entire time, held good conversation, and remember everything. The nurse later said she was amazed as she's never seen anyone be able to hold a conversation like I did, or be able to get up and walk around un-aided as I was able to do. Pain killers and tranquilizers seem to do absolutely nothing for me...I've discovered this at prior surgeries, but that's another story. Finally, about the time the procedure should have been finished, Dr. J was able to begin. The procedure wasn't fun, but survivable. Yeah, it hurt.

OCTOBER 30: I called Dr. H at Hershey to see if he'd been able to get in touch with Dr. J, and to see what the tumor board had decided, re: my lymphoma case. The tumor board still hadn't had a chance to discuss my case as they didn't have my biopsy slides to look at. Bummer.

NOVEMBER 3: Appointment with Dr. J to get my bone marrow biopsy results. Dr. J had said earlier that he was 99% certain that it wouldn't be found in my bone marrow, based on my previous tests and scans. HOWEVER...the test results proved him wrong, unfortunately. My official bone marrow biopsy report reads: "Immunohistochemical analysis of the bone marrow core biopsy shows two separate, T-cell predominant, lymphoid aggregates. Conclusive innunohistochemcial proof that these aggregates represent limited marrow infiltration by follicular lymphoma was not obtained. This does not exclude lymphoma." and.... "Combined flow cytometric and morphologic analysis suggesting limited, bone marrow involvement by low-grade, B-cell, non-Hodgkin's lymphoma (less than 1% of total nucleated marrow elements with T-cell predominantly lymphoid aggregates occupying well under 5% of the marrow spaces in the core biopsy").

Well, the good news is that IF there is lymphoma in the bone marrow, there's very, very little. But just the fact that there probably is a teeny bit there puts me in the stage 4 category, rather than a mere stage 1. Stage 1 simply means that the lymphoma has not spread and is in one location. A stage 4 means it could be everywhere and is in multiple body locations. Bone marrow involvement always means a stage 4.

NOVEMBER 5: Pre-op appointment with Dr. C, who will be implanting my chemo port on November 10. More paperwork is signed, and Dr. C explains the procedure and how the port works.

In the meantime, I'm still waiting to hear from Dr. H to see if the tumor board has reviewed my case. I fax some information to Dr. H about "watch and wait" to see what he thinks about this option.

NOVEMBER 7: Friday. Pre-admission testing at the hospital. On tap for today is blood work and an echocardiogram (since one of the chemo drugs can cause heart damage).

I FINALLY get a call from Dr. H, who says that the tumor board reviewed my case, and the lymphoma experts there agree with the "watch & wait" option. What a relief!! I call Dr. J's office and tell them this news. They call back to let me know they'll cancel Monday's port surgery in light of the fact that I may not need chemo based on this revelation. Whew!

NOVEMBER 14: Appointment with Dr. J to discuss options. Even though he was pushing for chemo, he admits that watch & wait is within the scope of practice and a legitimate option. Why didn't he mention this before? I'm actually a bit more than miffed at this. Further proof that a person is their own best advocate. We discuss the possibility of localized radiation to the area where the lymph node was removed. Dr. J stated that if my bone marrow biopsy had been done 20 years ago, the result would have been negative as flow cytometry wasn't available then. So, knowing that more often than not, a stage 1, grade 1-2 lymphoma could be cured with radiation alone, and I would still be grade 1-2, stage 1 without flow cytometry, why not treat me with radiation and hope for a cure? There's that "cure" word again. So, another appointment is set up with Dr. K, the radiation oncologist.

NOVEMBER 17: Appointment with Dr. K, who discusses side-effects of radiation, etc. I get measured and tattooed so they can radiate the same spot precisely each time.

NOVEMBER 20: My first of 15 radiation treatments. Scary only because I've never had this done before...and I KNOW it won't hurt, but it's creepy. Goes without a hitch.

DECEMBER 15: The last of my radiation treatments. Missed a few days because of the holidays and a broken radiation machine. The only side-effects I'm noticing is extreme fatigue, and the skin at the area being radiated has become very red and itchy...this didn't start until about treatment 12 or 13. I've been slathering pure aloe vera gel on that area as directed by Dr. J.

DECEMBER 17: A consultation with Dr. P, a radiation oncologist and alternative medicine doc who owns the cancer clinic where I've been going in Shamokin Dam. We discuss nutrition and supplements for an hour. He's suggested several things for me to do. (1) take between 6,000 and 10,000 mg of vitamin C daily. Cancer cells feed on sugar, and they mistake the vit. C for sugar, eat it and die because they can't uptake sugars as the C won't leave the cancer cells (my shortened version of the process). (2). Eat a "low amylose" diet...this will reduce the amount of sugar available to the cancer cells...I'll be reducing my sugar intake drastically! (3) Supplement with Iodorol (iodine), lecithin, Methyl B12, and folic acid in addition to what I'm already taking on a daily basis. He prescribes some blood tests for me, including a vitamin D test at my request.

DECEMBER 29: I get my hair cut! Lori cuts 36 inches of hair off (!!!), 32 inches will be donated to Locks of Love. My hair is now about 3 inches long, if that.

JANUARY 6, 2009: I get the results for my blood work and find that my vitamin D levels are perilously low. The vitamin D, 25-OH result is 23 ng/ml and the optimal amount is between 45-52. Dr. P recommends I take 2,000 IU of vitamin D daily. This I will do in addition to my 5 minutes every-other-day in front of the vitamin D lamp that I've recently purchased.

JANUARY 13: Follow-up appointment with Dr. K. Everything looks good. Skin is still very red and itchy, but that will go away. Still tired, but that too, shall pass.

FEBRUARY 2: Blood work! Something like 7 or 8 vials of blood is taken, again. At least I asked if I could lie down this time BEFORE I started getting woozy. I have no problem with blood, giving blood, seeing blood, but when they take that much out while I'm sitting UP, that's a big mistake!

FEBRUARY 11: Follow-up appointment with Dr. C. I thought it was to discuss my acid reflux, but he talked about the lymphoma issue instead and wanted to order a PET scan. Huh? I like this doc, but he's not my oncologist....I'll leave that stuff up to the cancer pros.

FEBRUARY 12: Follow-up with Dr. J to get the results of my blood work. He said everything looks good. He thinks we should have a PET scan done in May just to make sure everything is behaving. I've said "OK" to that. Dr. C wanted me to have one performed ASAP.

Looking Back

My recent diagnosis isn't my first brush with cancer. In May of 1996 I found an enlarged lymph node on my neck (left side)...the node was surgically removed and biopsied. Inititally the report came back that I had Hodgkin's Disease. This was confirmed by three different labs. I began seeing an oncologist, Dr. Harvey, at Hershey Medical Center in Hershey, Pennsylvania. Dr. Harvey is the most incredible doctor! He put me at ease immediately and was very easy to talk to. He took TIME to discuss my concerns. Anyway, after a few visits at Hershey, their lab took a second look at my slides and changed the diagnosis to non-Hodgkin's Lymphoma. Horrors!

Preparations were being made to start chemo. I had countless blood tests, and a bone marrow biopsy which turned into a disaster for me; apparently my body didn't like what was going on and decided to go into shock...low BP, thirsty, sweaty, nausea, restless...a truly nasty feeling. After that little fiasco I decided if I EVER had to have another bone marrow biopsy, I'd want to be put under general anesthesia!

The day after my bone marrow biopsy, I got a phone call from Hershey Medical Center. They had good news!! Apparently the lymphoma experts looked yet again at my slides and determined that I didn't have lymphoma at all, but rather I had what is called
"atypical follicular lymphoid hyperplasia." No treatments would be needed. At my last visit with Dr. Harvey, he told me to "keep an eye on things, because people who have atypical hyperplasia often end up with lymphoma down the road."

After nearly a month of pure agony, I felt like I'd been released from a prison! I could begin to live again.

Twelve years I am, newly diagnosed with follicular non-Hodgkin's Lymphoma...just what the good doc warned me might happen.