Thursday, May 29, 2008

Waiting game.

Tuesday I had my MUGA test, which makes sure my heart is strong enough to endure chemo. I assumed this would be easy, a few sticky patches on my chest and back, a few pictures, that's it. But the first nurse came in hacking and complaining about her sinus problems, the second apologizing for her garlic breath because of "these crackers and dip I just can't get enough of, my daughter told me about 'em, they're so good but boy, do they stink." Lovely.

I was surprised when Sinus Face told me they'd be injecting me with a radioactive isotope. Panic. I have tiny veins, and every time I have to be stuck, it's an ordeal. I end up surrounded by four or five nurses, each apologizing for the various holes they create in my wrists, hands, arms. This time was no exception. Garlic Breath couldn't find a vein big enough. She stuck me once. Again. The other nurse tried. Each time hurt more than the last, each more frustrating, more anticipation of the pain. I just sat in the chair and cried helplessly, mostly out of selfish pity that I have to be going through this.

Finally, the injection worked in my left wrist. They directed me to another room, where I lay in a big tube, first on my back, then on my side. Before I left, they gave me a card to carry for the next week, which would identify me as radioactive in the event I set off any alarms at airline security or federal buildings. The card basically says, "Hello, I'm not a nuclear terrorist, I'm just a radioactive cancer patient. Please do not send me to Guantanamo Bay."

Yesterday was my PET scan. I spent the morning dreading yet another needle. I arrived at the small office and a tall, blond gentleman guided me to a little room containing nothing but an oversized wingback recliner and a magazine stand. He asked me to relax, and I gripped the arm of the leather chair as he approached with the needle. That's it? I felt almost nothing. He was sent from the heavens, obviously. Not like the obnoxious duo the day before. It would be an hour before the injection would take effect, so I stole a glorious little nap in that big chair in the quiet room. Peace. Calm. No running to appointments. No chit-chat with nurses. No filling out forms asking, "Is today the 28th?" Just peace. 

The man woke me gently, then took me to another room with another tube. I lay flat as a board and motionless for 45 minutes as the giant donut measured the way my body—and specifically the cancer—was metabolizing the radioactive glucose that had been injected an hour before. (Cancer gobbles it up and appears as a bright flash on the PET images.) Eventually, the test was over. I put my earrings back in, my shoes back on. Before I left, the nice ladies at the front desk gave me a box of chocolates for my trouble. I smiled and told them thanks, I might just be back tomorrow. 

As of now, testing is over. I have appointments with my oncologist next week to review the results and discuss treatment options. Stay tuned.

Love you all,

Tara

Saturday, May 24, 2008

Three tests down.

Not much to report... my back's pretty sore from the bone marrow biopsy the other day. Yesterday morning I had the CT scan and pulmonary test done... those were cake compared with the biopsy the day before.

The CT involved drinking about 20 ounces of nasty grape-flavored beverage and then being injected with the contrast dye. Pretty easy, though I despise needles and fear the nurses who yield them. After that was over, went to the second floor of the same facility to get my pulmonary done. No needles, so it was a piece of pie. Had to breathe into a tube hooked up to a computer while too-cheerful technician, who seemed to be straight from teaching a Lamaze class, coached me. "Big breath in in in in in, hold it...now push it out out out out...good job! One more..." Did that about 20 times, then left the place to enjoy a somewhat normal day visiting my sister, sis-in-law, and my two adorable nephews.

Today it's my cousin's high school graduation party, where no doubt all kinds of people will ask about what's going on. I do appreciate the concern, but repeating everything is tiresome, especially when I don't yet know how far the cancer's spread, what kind of treatment I'll need, all the rest. Would like some normalcy, but it seems that's out the door for awhile. Still working on accepting that. 

Tara

Thursday, May 22, 2008

I (heart) Ativan.


Pic: Doc extracted bone and marrow  from my hip with this corkscrew-like torture device.

Left work mid-day to go get bone sucked out of my body. Yes! Went to go pick Graham up, and popped my first Ativan (AKA the date rape drug). Right away I started feeling warm and loopy, like I'd had a couple drinks. I started telling what I considered to be really funny jokes as Graham drove me to the appointment. 

We arrived, and per doc's instruction, took the second Ativan as I sat in the waiting room. I began singing Johnny and June's "Time's a Wastin'" and Graham chimed in. Nice. Needless to say, I was well prepared for my bone marrow biopsy, the test that would let me know if the cancer has spread to my marrow, indicating stage 4 Hodgkin's.

Finally, the nurse called us back to the room, and asked me to lie on the paper-covered table. She turned me sideways and held me down. Doc numbed me with three bee-sting sticks, then proceeded with the marrow extraction. Holy hell. Think about how it would feel to have a wine corkscrew taking out a piece of your bone like it were a cork. That's exactly how it felt, and actually, that's very close to what was happening—the nurse showed me afterward the tool he used. Yep, a corkscrew concealed inside a sharp, hollow tube. Yes, I was numb, but I could still sense the crank-crank-crank as the doc said sorry-sorry-sorry after my every yelp. But in 20 minutes it was over, they bandaged me up, and Graham and I were on our way.

I slept peacefully in the car thanks to my new friend Ativan. Barely remembered a thing by the time we got home. Graham had to remind me that during the procedure that the doctor's cell went off, blasting "Love in an Elevator" throughout the room. The doc laughed mid-crank and said, "Oh, that's my wife." Ew.

Anyway, the worst test is over, and I can still walk and wiggle. CT of the pelvis and pulmonary tests tomorrow morning. Those shouldn't be too bad at all.

Love you all.

Tara

Wednesday, May 21, 2008

Testing. Testing.

Pic: incision from last week's surgical biopsy, the test that determined I have Hodgkin's


So...I had an appointment today with a different oncologist. The first on Monday went OK, but I just didn't feel that great about the office or the doctor. The office seemed disorganized, the doctor like he'd rather be golfing, the appointment setter took her sweet time getting back with me.  I left that appointment knowing I needed more testing, but that's about it. He didn't even look at the CT films I brought with me.

Family to the rescue. My Aunt Mary made a call to Dr. Gaeke, the oncologist who treated my grandpa years ago. He died when I was in middle school after having battled stage 4 non-Hodgkin's lymphoma for eight years. Dr. Gaeke's office got me in right away—today. 

The office was the polar opposite of the oncology center I'd visited on Monday. Instead of a giant waiting room filled with patients in various stages of desperation, the small waiting room felt like it'd been there waiting for me to walk in. There was calm, peace, friendliness. When I checked in, Bonnie, this sweet, sweet nurse, took me to a room and charted my entire medical history down to each sprained ankle and wisdom tooth extraction. She looked at me with kindness after hearing that two different doctors put me on antibiotics before realizing it was something more serious, and said, "Honey, when they see someone as young as you, they just don't want to believe it could be anything else." So sweet.

Soon, Dr. Gaeke came in, her salt-and-pepper hair pulled into a long pony tail. She greeted me with a firm handshake, sat down, and proceeded to review the entire history the nurse had just collected, word by word, aloud. She asked for my my CT films, then held each sheet up to the light and educated me as I looked over her shoulder. When the visit came to a close, she asked me what other questions I had—not "do" I have more questions, a little difference that means so much. She spent two full hours with me, was compassionate without being sappy, professional without being cold. 

And she was thorough. Whereas the other doctor didn't even look at my CT films, Dr. Gaeke did, and made a realization. My neck is showing enlarged lymph nodes on both sides, not just the right side, the one causing me pain. In fact, the lymph nodes on the left side of my neck are even more enlarged than the ones on my right side, leading Dr. Gaeke to suspect I'm in stage 3, at least stage 2. 

But the test results to come will tell us more. Bone marrow biopsy tomorrow. Ugh. That one is gonna hurt. Big giant needle into my hip bone to see if the cancer's reached marrow. Friday, CT scan of the pelvic region and a test of my lungs to be sure I can handle the chemical in chemo known to be hard on the lungs. Tuesday, a PET scan, where they'll inject radioactive glucose into my blood, let me sit and radiate an hour, then scan as the cancer sucks up the sugar—this gives a very precise idea of what's cancer, what's not. Wednesday is my MUGA test, where they measure the volume of blood pumped by my heart's left ventricle. This is a good indication of heart strength, which they need to know since one chemical administered in chemo is tough on the heart.

By this time next week I'll have had it, I'm sure. Please keep me in prayer, and pray for those poor souls about to administer all these tests. (When I had my wisdom teeth out, I actually told my dentist, "No offense, but I pretty much hate you!" That's what he deserved for not putting me under.)

I'll let you know how my bone marrow biopsy goes tomorrow, if I can hobble up to my office to type afterward. Love you all!

Tara

Monday, May 19, 2008

Hello, Hodgkin's.

About a month ago I noticed a painful lump near my collarbone. It felt like an olive underneath my skin, on the right side of my neck. It ached like a deep bruise. Fast forward four doctor's visits, three misguided weeks of antibiotics, two biopsies, and one CT scan. Add that the lump throbbed when I drank alcohol, and that I woke a few mornings damp all over with sweat. I got the call at work. Hodgkin's lymphoma. Cancer.

So much is going through my head right now. So many questions. Today was my first meeting with an oncologist, and still so much left unanswered. This coming week will involve more CT scans, a P.E.T. scan, a bone marrow biopsy, a meeting with a fertility specialist to learn how to defend my 28-year-old body against sterility, and tests of my heart and lungs to make sure they're strong enough to stand up to the chemical cocktail coming my way.

I'm so scared. Since finding out last week I have Hodgkin's, I've gone from avoiding the computer for fear of what I'll learn to devouring all the info I can get my hands on. I've gone from depressed and alone to overwhelmed by how many people have contacted me with loving words. I've bitten Graham's head off out of stress and frustration and then've climbed into his arms for comfort, silence, safety.

By this time next week, I'll know what stage I'm in. 1A? 2B? Please, God, not 3 or 4. Hodgkin's does have a high survival rate, but this will be no picnic.

Thank you for reading my first post. I'm starting this blog to help me sort out my thoughts, document my progress, and provide a place for family, friends, and strangers to keep up with my treatments and communicate their thoughts and questions. I've already benefitted greatly from reading blogs posted by Hodgkin's survivors, and I pray if anything positive comes from this mess, it's hope and help for someone else.

Love you all.

Tara