Unfortunately, recent events have given me cause to get back on this blog because I am exhausted with trying to update every one. I love you for asking, I really do! But it's hard to keep up with so many friends and family members (not complaining!!).
Here is the rundown:
In April 2009 I was having some pretty bad back pain that came and went and I assumed was a pinched nerve from sleeping funny. At the end of the month I went camping with my friends and jokingly mentioned this "weird bump" on my neck. My dear friend Saif suggested it might be an infection since it's my lymph node, and that I should go to the doc for a checkup. I did. The next week I had a referral to an ENT, Dr. Houtan Chaboki at GWU Medical Faculty Associates. He did a thorough job of going through all the possibilities (antibiotics, ultrasound, and finally, fine needle aspiration (that hurt!)). The initial results came in and "suggested Hodgkin's Lymphoma" so he referred me to Dr. Sedaghi, also an ENT there, but one who specialized in surgery like I would need to have an open biopsy (that is, to remove a whole lymph node for examination. Dr. Sedaghi called me on June 10th and said, yes, it is Hodgkin's Lymphoma and he referred me to Dr. Imad Tabbara at the GWU Cancer Center in the same building. The after-effects of the open biopsy were a scar on my clavicle area and a little bit of nerve damage right in that spot.
I met with Dr. Tabbara, who was very kind and patient, and he told me that the first thing to be done is to "stage" the disease and see how far it has spread. This includes a bone marrow biopsy, which was awful, don't let them tell you it isn't, hello! they are sticking a needle into your bone and digging stuff out. For real. The next thing they do is a PET/CT scan, which involves injecting you with a radioactive isotope and making you drink some nasty barium fluid in a room all by yourself for an hour, then lying still for 45 minutes or so in a tiny tube while they scan your body. I did both of these tests pretty much by myself, though Saif was waiting for me in the waiting room when i finished the pet/ct which was a huge relief.
Results from the tests came back on my 27th birthday, June 29th (some birthday present!!). The cancer was quite widespread throughout my chest and neck, and under my left arm, and surprisingly had metastasized to a spot on my T1 vertebrae. This spreading made my cancer Stage 4A (my only symptoms were the back pain from that tumor, no night sweats or fevers, which would have made it stage 4b). 4 because it had made its way to this other system (my bone). Luckily, somehow the bone marrow itself was clean so my chances were still pretty decent. The 10 year survival rate for my kind and stage of cancer is 80-85%. I will not lie and say I am happy with that, because there are times when I cry and wish that it could be somewhere closer to 99% --- this isn't some kind of infection, it's a cancer that apparently has magical spreading abilities and may have been growing for months and months. I also have these skin cancer scares going back years that still haunt me. I guess even though the survival number is still quite, quite high, to me it's not as reassuring as it might be to most people. Nevertheless I am staying quite positive because i know that makes a big difference!
So, with these results, the doctor said my treatment would be chemotherapy (ABVD- adriamycin, bleomycin, vinblastine, and dacarbazine) for six months. I go in every other week for the IV infusion of these drugs (plus some "premedications" which include anti nausea medication and a steroid to help my body take in the medicine). In order to save my veins, I opted to get a port implanted in my chest. This is a great little device that is surgically implanted at the hospital (under conscious sedation, meaning sleeping medicine, it was awesome- and Saif was also with me at the hospital for this procedure which calmed me down A LOT). It goes under your skin and there are two incisions, one small one and one bigger, gnarlier one. It took about two to three weeks for my scars to look tolerable and the bandages to be removed, but there really wasn't much pain, only a bit sore to the touch for a week or so. It was implanted on a tuesday and i had the first chemo infusion, without any complications, on that thursday. Oh, I forgot to mention the week before I had to have an EKG (normal) and a Pulmonary Function Test (where they make you inhale poisonous gases, for real!) which also came out "OK." and my blood was also "OK" though slightly anemic and i need to take a multivitamin.
The chemo infusion went well, everything as expected, and the nurses at the GW Cancer Center are amazing and kind. The facility is very, very comfortable and they have juice and crackers and magazines and laptops, etc. and you can also bring your own stuff (DVD players, food, etc.). They let you do whatever you feel like doing, and you can go to the bathroom as much as you want because the iv poles are portable and the bathroom is huge. haha. I just thought that was cool. I never feel like a super sick person. In fact, the second time around I wasn't even paying attention to what was going on with the iv's and the nurse coming around to put the next drug in... I was watching a documentary and eating a sandwich!
The day after each infusion I go in to get a shot called Neulasta. This drug prevents my white blood count from going down too far (which would delay my treatment), but unfortunately it causes some painful side effects, including flu-like soreness in my head, neck, and back. and BONE PAIN, like arthritis. The bone marrow expands with this shot, and that hurts. Who would have guessed? Thankfully, tylenol helps in this area. Regarding side effects from the chemo, yes, I feel quite tired usually two days after the infusion (so getting infusion on Thursday, I can work at least a half day on friday, and be home living quietly on Saturday and Sunday, then back to work on Monday). The nausea is almost completely controlled by a prescription called Emend which I take the two days after infusion, though my tummy and head feel slightly off-- my only point of reference is a mild hangover. My hair is coming out a little bit more after yesterday's second infusion (the doctor said to expect it around this time), and I already have a beautiful, natural looking wig that is ready to be fitted when it's time to buzz the hair.
So many of you have asked if there is anything you can do, and I thank you for that! For my DC friends, just trying to keep my life as normal as possible when I am having good days (e.g., hanging out, going to dinner/movies, events, etc.). And when I am having bad days, it means a lot for you to ask if you can bring me anything (even though i am so type A that i probably have prepared whatever I might need, hahah)... you never know when I might REALLY NEED a baked potato.
For my out of town friends who are within visiting distance, feel free to discuss visiting! I am so excited to have you, on good weekends we can do fun stuff, but if you come on a treatment weekend, we can watch movies and play games and try to go for a walk...
For my far away family and friends, just take comfort in knowing that I have made a great network of friends and colleagues here who have all stepped up to be my surrogate family. And everyone write me letters. You have no idea how much snail mail rocks my world. I cry every time i get mail because it's so special! 3165 18th Street NW Washington, DC 20010
The only thing I am scared about is that this treatment is a long-term thing. It is six months long at the very least, and if there is a relapse or any complications, could be longer. I want you to pace yourselves! I will need you just as much in November as I do now, so please don't overdo it now and burn out. I am really tough, and self-sufficient, so you don't need to bend over backwards now, and don't go into crisis mode unless I tell you to! LOL!! I promise to always be honest and tell you if you can help, and if you can't.
I am planning to keep this blog updated so people can follow along...
LOVE!!!
Tiffany
