Wigs and such.

Well...this is it. I feel like this week has a been a countdown of days left that I have feeling "normal". Tomorrow, and for the next 4 months, my body will be pumped full of toxic drugs, otherwise known as chemo. One of these drugs actually has the nickname "the red death" because of it's cranberry color and toxicity. Oh joy. I'm more anxious than anything about tomorrow. I'm ready to see just exactly what I'm up against.

On a lighter note, I went shopping today with Jill. Wig shopping, that is. Wow was that an experience! We went to several different places. One shop we went to was perfect...if I were 60 or older. The majority of them are actually pretty real looking, though. I tried on some horrible wigs, just for fun. Even a platinum blonde one. Though with that one I'd need some really dark sunglasses, a scarf around my head, and be following a cheating husband. Something like this:

I even managed to toss a wig off my head and fling it across the room (with a smooth save by Jill) just by "brushing" it. I'll watch out for that in the future. Or better yet...if you see me with a brush in hand...run. You might get hit. :)

Chemo class

Matt and I went to a chemo class yesterday. While the vast amount of information was useful, it was also a bit overwhelming. When I'm stressed or upset, I turn to baking. Needless to say, I baked muffins and 3 different types of scones last night. From scratch. Reaping those benefits are my brother's work and the office staff at my school (which my mom is a part of...).

While at class, I received an entire packet of information on side effects and watched a video about the side effects. They really, really want you to know about those. I plan on scanning the packet in and putting up a link...sometime. As for now, I'll leave you with a couple of things that are bringing inspiration to me. One is a message that a new friend of mine (from the class) sent. It's long, but well worth the read. That's first and is italicized. The second is a link to a video. Also long (about an hour or so), but also well worth it. Many of you have probably read/seen at least one of these. For those who haven't...enjoy!


Two years ago, television commentator and broadcaster Tony Snow first revealed that he had colon cancer. Following surgery and chemotherapy, he joined the Bush Administration in April 2006 as press secretary, yet unfortunately, on March 23, 2007, Snow, 51, a husband and father of three, announced the cancer had recurred, with tumors found in his abdomen, leading to surgery in April, followed by more chemotherapy. Snow went back to work in the White House Briefing Room on May 30, but has resigned since, for "economic reasons," and to pursue "other interests."

His public statement speaks for itself:

"Blessings arrive in unexpected packages, - in my case, cancer. Those of us with potentially fatal diseases - and there are millions in America today - find ourselves in the odd position of coping with our mortality while trying to fathom God's will. Although it would be the height of presumption to declare with confidence "What It All Means," Scripture provides powerful hints and consolations.

The first is that we shouldn't spend too much time trying to answer the "why" questions: Why me? Why must people suffer? Why can't someone else get sick? We can't answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer. I don't know why I have cancer, and I don't much care. It is what it is, a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out. But despite this, - or because of it- God offers the possibility of salvation and grace. We don't know how the narrative of our lives will end, but we do get to choose how to use the interval between now and the moment we meet our Creator face-to-face.

Second, we need to get past the anxiety. The mere thought of dying can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere. To regain footing, remember that we were born not into death, but into life,- and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many non believing hearts - an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live fully, richly, exuberantly - no matter how their days may be numbered.

Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease,- smooth, even trails as far as the eye can see, - but God likes to go off-road. He provokes us with twists and turns. He places us in predicaments that seem to defy our endurance; and comprehension - and yet don't. By His love and grace, we persevere. The challenges that make our hearts leap and stomach churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise.

'You Have Been Called'. Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet, a loved one holds your hand at the side. "It's cancer," the healer announces. The natural reaction is to turn to God and ask him to serve as a cosmic Santa. "Dear God, make it all go away. Make everything simpler." But another voice whispers: "You have been called." Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter, and has dragged into insignificance the banal concerns that occupy our "normal time."

There's another kind of response, although usually short-lived an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tiny, and placed before us the challenge of important questions. The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing through the known world and contemplating trips to what must have seemed the antipodes (Spain), shaking the dust from his sandals, worrying not about the morrow, but only about the moment. There's nothing wilder than a life of humble virtue, - for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do.

Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf. We get repeated chances to learn that life is not about us, that we acquire purpose and satisfaction by sharing in God's love for others. Sickness gets us part way there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two peoples' worries and fears.

'Learning How to Live'. Most of us have watched friends as they drifted toward God's arms, not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love.

I sat by my best friend's bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was a humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. "I'm going to try to beat [this cancer]," he told me several months before he died. "But if I don't, I'll see you on the other side."

His gift was to remind everyone around him that even though God doesn't promise us tomorrow, he does promise us eternity, - filled with life and love we cannot comprehend, - and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms. Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don't matter so that we might devote our remaining days to things that do?

When our faith flags, he throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it. It is hard to describe, but there are times when suddenly the hairs on the back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know: Others have chosen, when talking to the Author of all creation, to lift us up, - to speak of us! This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God.

What is man that Thou art mindful of him? We don't know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us who believe, each and every day, lies in the same safe and impregnable place, in the hollow of God's hand."

T. Snow (June 1, 1955 – July 12, 2008)

Video: http://www.youtube.com/watch?v=ji5_MqicxSo

I'll relieve you of your suspense.

So...last night...I...cut...all my hair off. :) Figured it would be less traumatic to lose short hair than the 10+ inches we cut off. Jill did it for me. And did a great job! Now I'm almost as sad to lose this cut! I'm donating my hair to Locks of Love. Oh the irony. I've posted video below of the actual cut and some other random stuff and put a link to all the pictures (courtesy of Matt) over there----->.

Hesitant:

With the help (and moral support) of Edlin

and Christine:

Yea!:

Happiest I've been in 2 weeks...

I did something very drastic tonight. Unfortunately for you...I'm tired now and am going to bed. Ha! I'm like a suspense writer. Call me Dean. :)

More info tomorrow. Good night, folks.

Medical mumbo jumbo and other stuff.

Since I didn't have any interesting or graphic testing today (FINALLY), I thought I'd fill you in on the medical aspects of Hodgkin's. One thing I forgot to add yesterday is about my stage. I'm officially classified Stage 2, which means there are two or more lymph node regions on the same side of the diaphragm that are affected. Also, there are different types of Hodgkin's. Mine is Nodular sclerosis (NS). "The lymph nodes in the lower neck, chest and collarbone usually contain normal and reactive lymphocytes and Reed-Sternberg cells separated by bands of scar-like tissues. NS accounts for 60-70% of Hodgkin's cases. NS appears to account for the increase in Hodgkin's cases in recent years." (taken from http://www.lymphomainfo.net/hodgkins/diagnosis.html)

The type of chemo I'll be getting is ABVD. It's one of the most common chemotherapy regimens for Hodgkin's. This will be administered through the Mediport. Yes, there actually is a use for that...not just something for me to complain about. :) You can read all about the drugs and their lovely side effects here: http://www.lymphomainfo.net/therapy/chemotherapy/abvd.html

My plan is to eventually post some pictures. Surgery pics and whatnot for those of you who like that sorta thing. I mean...I don't. I can look down at the actual wounds and cringe. I certainly don't want pictures. But for those of you who do (Dad and Melony...), they'll be up soon.

One last thing for the night...a story about my oncologist's office. One thing about my family is we definitely leave an impression wherever we go. This is not a news flash to most of you. Yesterday at my oncologist's office, the secretary preceded to tell me that after we left the office the first time, she told the whole rest of the office about us. I wrote in one of my blogs that there were about 30 people there. Okay...not literally, but close. She couldn't get over how wonderful that was. What struck a chord with me was what she said after that: "I can't tell you how lucky you are...most people here don't have that." Wow. Talk about a slap in the face. I thought that was normal. You know, for everyone to come and just...be there. I mean, sheesh. Even my family from Colorado wanted to drive down just to be here this week. We had to talk them out of it. I can't imagine doing this without the love and support of my family and friends. I am lucky.

Okay...enough mushy stuff. More gross, turn-your-stomach stuff soon. Check back. Thanks and goodnight.

Done.

We got some bad news today. The results from Monday's PET scan came in. The cancer has spread. There are a couple of spots on the same side of my neck and a spot by my windpipe. Depending on the results from today's test, the chemo could change. Unfortunately though, radiation has been added to the mix. About a month of it or so. Yea. My oncologist also told me I would most definitely lose my hair.

Today I had the bone marrow test. I'll save you the details on that, but basically it looks like this (feel free to cringe):


And I was lying about the details. I live them...you have to hear about them. :)

Matt and I met Mom at the oncologist's office this morning. I had blood drawn (AGAIN! Grrrr...) then we went back to the exam room. My husband went back with me for moral support. The entire process was explained to us and I was then able to take one of my anti-anxiety meds. I changed into the gown and hopped up on the table. I was to lay face down (also very fun with the Mediport) and then start the narcotic lollipop. That looks like this:

Had no specific flavor, just sweet. Well, guess what? About half way through, I start breaking out into hives. Had to stop the lollipop. :( Turns out they were just from nerves. Anyhow...the procedure starts with marking the spot. Basically I could feel a lot of pressure on my hip as she tries to figure out where to take the bone marrow. I'm slathered down with more yellow dye and the numbing process begins. After about 10 little pricks of anesthetic, my hip was completely numb. The needle was injected and all I could feel was pressure. The weird thing is you can actually feel the needle in your bone. It doesn't hurt at all...just a weird sensation. Then she did lots of jiggling and kept complimenting me on how hard my bones are. After about 15 minutes, the marrow was extracted and the wound was cleaned. I had to lay there for a minute on my back to put pressure on it to stop the bleeding. Then I got dressed and was free to go.

I start my first session of chemotherapy next Friday. Shortly after is when I'll lose my hair. She actually gave me a prescription for a wig.

Now it's time for bed. It's been an emotionally draining and exhausting day. And now I can add physically painful to the list. The anesthetic has worn off and the hip (and yes, still the Mediport) hurt. At least there's nothing tomorrow!

5 down...1 to go.

From yesterday's blog, you know I have the Mediport in. Still hurts. I'll post pictures soon. :)

Today I had my MUGA scan and PFT with DLCO. The MUGA scan was fairly easy. Well...I guess "easy" doesn't necessarily describe it. It starts out by taking a sample of blood. I've been trying to ration my veins since every test entails injections of some sort. The bruised veins from last week's fiasco are finally somewhat healed. I used my right arm for the PET scan injection Monday and my hand for the IV for the Mediport surgery yesterday. That left my left arm for today. My tech was very good...she hit the same place as the 2 last week and ran into scar tissue. She ended up having to take it out and do it higher up. Once the blood was drawn, the IV was kept in for 25 minutes while my blood was mixed with radioactive markers.

My Arm:

At least with this test, I was able to wait out in the waiting room with my mom and sister-in-law, Melony (who rearranged her entire schedule to take me today. :) ) After the 25 minutes was up, my blood was injected back in my bloodstream with some other stuff. I was taken to another room to lay down on the scanning machine. That's a fun thing with the Mediport. Takes forever to get adjusted. After about 20 minutes of pictures, my heart shows up on the screen. The tech showed me all the things they're looking for. I also got to see the Mediport. Really cool stuff. And now there's proof I actually have a heart! :)

After that came the PFT with DLCO. That looks like this:


This is a little harder to describe unless you were sitting on the other side of the wall and heard the nurse yell at me. It sounded very comical to them. Basically you sit in this chamber and bite the tube. Your nose is plugged and you breathe through your mouth. Very repetitive. As I suppose breathing is. Anyhow, all at once the nurse yells at you to exhale until you have no breath left and then some. Then you inhale and hold your breath for 10 seconds. This happens about 10 times. Very fun stuff. At least there were no needles involved. I'll take it.

Tomorrow is the bone marrow test. Not looking forward to it. I can't lie...I am looking forward to the narcotic lollipop. I'm very intrigued by this and will let you know how it turns out. 1 MORE TEST TO GO!!!!!!!!!!!!!!

Ugh.

Today I had my Mediport put in. Ouch. The surgery went well, but the aftermath has not been pretty. So far this has been the worst I've felt. Thank goodness for Vicodin.

I like my pets better.

I had my PET scan today. It looks something like this:





One thing they don't warn you about is how unbelievably BORED you'll be there. You're taken back to this huge room with a huge chair. I felt like a dwarf sitting there...which, I suppose, isn't saying much. Though the only other time I can recall this feeling is when my name was Alice and I was in Wonderland. :) Anyhow...once you're injected with the radiotracer, you have to sit for an hour. Just sit. Move only if you have to, no talking and lots of resting. With no cell phone, watch or clock in the room, there's also no concept of time. Every set of footsteps down the hall and past the door brought hope that the waiting was over. I was disappointed more than once.

Finally my tech guy came and the testing was started. It takes about 45 minutes for the entire scan. As far as scans go, this one was by far the most relaxing. Once we left the radiologist's office, we headed to the next appointment, first making a pit stop at Starbucks. Yea! As for the last appointment of the day, I'll just summarize that visit by saying this: in the way of kids in the future, we should have no problem.

Now it's time for dinner. In the past 24 hours, I've only had water (and finally coffee). Better eat now...fasting for tomorrow's procedure starts soon.

The "perks" of Hodgkin's.

To prepare for my PET scan tomorrow, I'm not allowed to have any caffeine or sugar starting today. Those of you who know me best, know the one beverage I have a slight addiction to: COFFEE. (And no...not black and decaf.)

So until 4:00 tomorrow afternoon...let me just say this: this sucks.

(Update: my husband just surprised me with breakfast. My day is looking up already!)

Social calendar is officially full.

If you're a doctor, you're in luck! I'll probably be seeing you sometime next week.

I got all the dates for the other tests today. So...

Monday--PET scan at 1:15 then on to the Medical Clinic of North Texas for a 4:00 appointment. Unfortunately with chemo, another risk is infertility. We'll be going to discuss options.

Tuesday--Mediport surgery at 9:00.

Wednesday--MUGA scan from 12:00-1:00, then on to my PFT with DLCO at 1:30.

Thursday--Bone marrow extraction at 10:30.

Friday--Sleep. :)

Today I went out with one of my best friends, Jill, who just so happens to work in the hairstyling field. I feel more confident about the hair loss thing. We discussed options for every possible scenario and boy do we have some surprises in store for the general public. Think spiky and pink. :)

Reality strikes.

We received good news this morning: my thousand CAT scans from yesterday came back clear. No more noticeable swollen lymph nodes. Everything looked good. Yea! One point for me.

At 1:30, we arrived at the oncologist's office. This is the place I've been dreading. The diagnosis hadn't yet set in until...now. I filled out paperwork, talked to the financial advisor, and had lab work done. Obviously not thinking clearly, I didn't mention to the lab tech that the same arm she was drawing blood from was the same arm the dye was injected in last night. Ouch. Now it's bruised. That turns out to be the least of my worries.

We (mom, dad, Matt and I) go back to the oncologist's office. I had a whole entourage there with me...left in the waiting room was my sister-in-law, Melony, and my mother-in-law. My brother, Bryan, showed up as a surprise later. Sucks to have so many people care for you. :)

Here's what she tells us: I'll have to have chemotherapy for 4 months. Before starting, I have to have 4 more tests and 1 more surgery done. At 9am on Tuesday, the 22nd, I'll be getting a mediport. A mediport is a device that is implanted under your skin so that medications may be delivered directly into your blood system. It looks like this:

On Thursday, the 24th, I'll have a bone marrow test. Fortunately, I'll have what the nurse called a "narcotic lollipop" and another anti-anxiety medication. They'll numb my hip and remove a small sample of tissue. This will detect whether the lymphoma has spread to my bone marrow. And sometime between these two procedures, I'll have 3 more. A MUGA scan, which will assess the function of my heart; a PFT with DLCO, which measures the ability of my lungs to transfer oxygen from the lungs to the blood; and a PET scan, which will be performed for staging info. Chemotherapy has long term side effects including damage to the heart and lungs. The MUGA scan and PFT with DLCO are precautionary steps.

My chemo will be given every 2 weeks through the mediport. Some side effects with chemo are fatigue, nausea and hair loss. I'm not entirely prepared for the last one. My insurance, however, will cover a wig. :) I have 3 prescriptions for nausea. One to take during the chemo, one for the 3 days after chemo, and one for anytime in between. I'll have periodic blood tests to test my white blood count. After every cycle of chemo, I'll be giving myself a shot of Neupogen. This will keep my white blood cells from dropping too low between each treatment.

Now we wait. With more tests and tests results to come, some of this might change. Radiation might be added to the list, which will be given after chemo. A higher dose or longer treatment of chemo might happen. We do know that chemo will start after the next week and a half.

Sigh.....

Here goes...

Today, July 16, 2008, I was diagnosed with Hodgkin's lymphoma.

As many of you know, I found a lump on my neck back in March. My doctor told me it was probably a swollen lymphnode or built up scar tissue from an infection. I was put on an antibiotic and when it didn't go away, I had a couple of CAT scans done...one in April, the next in June. The results for both scans came back the same...the lump had neither gone away nor had it increased in size. My doctor spoke to a radiologist and a surgeon and they all agreed that removing it would be best. So...I had surgery on July 3rd.

The surgery went well and my surgeon said everything looked good...he would be shocked if anything came from it. My "lump" traveled everywhere. Started in Austin, then on to the northeast and to San Francisco. While it was vacationing (as my husband says), we were anxiously awaiting results. After 5 pathologists looked at it, I finally got them: Hodgkin's lymphoma.

I proved to be as difficult and stubborn in my medical history as I am with my personality. I managed to fool both doctors and 2 CAT scans. I had no typical symptoms of lymphoma, including fever, night sweats or significant weight loss. I've had a low grade fever on and off and some weight loss, but neither that would classify in the "significant" category. My lump didn't grow as it should have and it also wasn't necrotic in the middle. Both classical of Hodgkin's. To no fault of them, both my doctor and my surgeon were as shocked as I was.

My doctor called. He broke the news to me and informed me of the next step. I was referred to an oncologist and more CAT scans were ordered. I had a 3:00 appointment today with my surgeon to remove the bandages. My doctor had ordered the CAT scans asap and after leaving the surgeon's office, we went to my next appointment. Arriving at 4:30, I started the first 16 oz. bottle of flavored Readi-Cat 2, Barium Sulfate Suspension. I had to drink two in a 30 minute time period. Let me described these if you've never had one: it has the taste and consistency of Elmer's glue. Even though they're supposedly flavored (one apple, one berry). Yuck. At 6:30, my scans started. I had a head, chest, abdomen, and pelvis scan. First without an injected contrast dye and then again with the dye. I was finally done at 8 pm.

Sheesh. What a day. And this is only the beginning...