Question and answer session

• Appointment with Dr. MM at Barnes West County

Today I had an appointment with Dr. MM to go over the specific details and preparation for surgery. This time we met at his west county office, only minutes from home, and he is the only person in the room with me and Hector. No fellows nor students nor nurses, just Dr. MM.

I've prepared (and printed out!) my list of questions and we go through them all. There's not a lot of new news but instead it's confirmation of many details. Based on all available information so far, the surgery is expected to take 3 hours and my hospital stay is expected to be around 5 days. But there are a lot of what-ifs that could change that timeline, starting with CT/MRI scans next week that could determine if Dr. C will be doing anything on my liver during the surgery.

Bring a book

• Appointment with Dr. T

Hector, Laura, Sharon, and I all met at Siteman in the afternoon for what we had been warned might be a long wait. It's a busy time of the year with the holidays and when the nurse called to confirm my appointment a few days ago, she told me that I "might want to bring a book along to entertain myself." I explained to her that I was bringing my husband and two sisters and we'd likely keep ourselves entertained. (And I was right! I'm not sure that exam room has ever heard that much laughter.)

About an hour passed before we were called back to a room but soon after that Dr. T came in. Intelligent and soft-spoken, Dr. T went over the details of my history with us and talked about some additional testing that he would suggest. He agreed that right now would be a good time for surgery as I have tolerated treatment well and we have kicked the cancer back a bit (my words, not his exactly, I do love a good sports analogy). We discuss that I'll meet up with him about 2 weeks after surgery to see how we will proceed with treatment. 

Compliment

"You look like a hug waiting to happen."

Counting sheep

Being home for the past three days with the flu + starting to feel a little better + a How I Met Your Mother marathon on Netflix = being wide awake at 2 a.m. And sheep don't really do it for me.

Cancer Olympics

I just started a new book yesterday afternoon called Cancer Olympics. One of things that has struck me the most so far is that the author created a one-page typed summary about her case, important dates and details, that she basically handed to every new doctor that she came across. I suppose it cuts out repeating the story 100 times. And it puts the dates and details in writing, which, in the case of the author might have helped her case from the very beginning, as there was a severe lack of communication between doctors. For me, the topic of communication of dates and details becomes immediately important as I seek out a second opinion. Creating this summary or timeline seems like a lot of work but really, it's what I've been living for the past 6 months, it's my life, it's my story, it can't be that hard to get all of that on to one page, right?

Good results

• Appointment with Dr. R for bone scan results and follow-up on flu symptoms

The results of the bone scan are good! There is no sign that the cancer has spread to my bones. That doesn't help to explain the hip pain, however, it has improved since Tuesday (to be noted, I stopped the Xeloda on Tuesday). Dr. R doesn't think the hip pain is related to the Xeloda though, as it might cause all over pain but not pain specific to a particular joint. If the hip pain comes back strong, she suggests an MRI to look for muscle or tendon problems. Other good news is that my fever, chills, and body aches are improving. I have a pretty painful sore throat and cough but it seems that this flu could be on it's way out. She suggests that I continue to hold off on the Xeloda until after surgery. Today is the conclusion of a long week of appointments and phone calls.

Freaking freaky

• Bone scan

So I went to the nuclear medicine department at the hospital first thing this morning for the start of the bone scan process. I'm injected with a tracer and I'll have to come back to the hospital 3 hours later for the scan. Thank goodness it's such a nice day outside and I'll have time to run errands and... oh wait, it's snowing and cold and miserable. (Thank you St. Louis.) The actual scan itself takes 25 minutes once it starts. Similar but different than a CT or MRI machine, the closeness of the machine to my face is a little scary but the openness on the sides helps to keep me from freaking out.

Both times when I entered the hospital, I took one of the masks that they offer next to the hand sanitizing gel upon entering the hospital. Next to the masks, the instructions say, "if you haven't gotten your flu shot, please take a mask to help prevent the spread of the flu." What about when your doctor thinks that you actually HAVE the flu? Waiting down in the nuclear medicine department, I feel like every person that walks by is giving me a strange look. I'm thinking, "hello people, I'm doing my part to prevent the spread of the flu, embrace the mask!" I wonder if the doctors and nurses all think the masks aren't really helpful or if they think I'm one of the loonies who thinks that she always needs one. Anyway, I decide to take it off to inspect it, maybe it is on backwards or something. And oopsie, blood from my nose has been dripping down on to the mask and it really is quite freaky looking. For me, the sight of a bit of blood on the mask isn't scary, because having a dry and constantly a little bit bloody nose has been one of the side effects of chemo. But to these other folks that just walked past me, I get it now, you win, the strange looks might have been warranted. Get off my case though, it's a hospital. If my life was all rainbows and butterflies (or cartwheels and cupcakes), I would not be sitting in the waiting room of a nuclear medicine department at a hospital. Okie dokie?

Company

As usual, I have good company today.

I don't think I've ever had the flu, well...

• Appointment with Dr. R for flu symptoms

Dr. R thinks I could have the flu (she's been seeing a lot of it in her patients, um, maybe I caught it when I was there on Monday!) or possibly something like strep throat. She prescribes Tamiflu and a Z-pack to throw everything at it and see what sticks. (My words there, not hers exactly.) Also, she tells me that I shouldn't take any more Xeloda until at least I see her again in two days. We don't want these symptoms to escalate into something more serious and we certainly don't want to have to be admitted to the hospital. Being at home to recover sounds much more appealing to me.

Sick sick sick

• Evening phone call to Dr. R's exchange

Within an hour of being home from work, I am miserable. Again... whoa, where is this coming from? I have a high fever, chills, body aches, a sore throat, and a cough. It's after office hours, so I decide to place a call into Dr. R's after hours exchange. Dr. F returns my call and he speaks so quickly and abruptly that I feel like the fast-forward button is on. He suggests taking Advil for pain, not taking the evening's dose of Xeloda, and calling in the morning to see Dr. R. He asks me a few questions that make me pretty confident that he hasn't looked at my medical records. It doesn't exactly give me the warm fuzzies but at this point, I'm feeling too sick to really care.

This hip pain is no joke

• Phone conversation with Dr. R's office

My left hip starts bothering me. First, only a little bit, and then, it's overwhelming. I'm having trouble walking around my office and I'm noticeably limping. And it hurts, a lot. Um... whoa, where is this coming from? It becomes unbearable and I make a call to Dr. R's office. They place an order with the hospital for a bone scan that I'll need to call and schedule. Upon leaving work, I first have a bit of a breakdown on the phone with one of my sisters (I later decide to place some of the blame of this on the flu about to hit me), I'm upset about this hip pain and the hundreds of what-ifs that are now running through my brain. Luckily, the breakdown finishes slightly before 5 so I am able to call and schedule the bone scan for Thursday morning.

Clinically not significant

• Appointment with M at Dr. R's office

I went in to see M at Dr. Rodger's office today to get the results of my genetic testing. Which might sound like nothing to be too frightened about, but it is. While my family history shows no basis for finding any of the number of genetic abnormalities and syndromes that this testing is looking for, a positive result is possible, especially based on my young age of diagnosis with no other known risk factors. The good news is that the results are negative. "No clinically significant mutation identified." 

Car Stickers

A fun wedding gift, these stickers will likely never make it to the rear windows of our cars. But they are still cute on the window at home. Happy 3.5 months to us!

Cards and Thank Yous

Bad news travels fast. And this morning I learned that the father of one of my long-time soccer friends passed away from lung cancer earlier today. I can't get my brain to figure out how long I've known her, but I would guess around 15 years. I haven't seen her in person since this summer, as I have been battling my own battle, but I have received many team Get Well Soon cards with her signature and notes. "Miss your happy spirit on the field. Get well and come back soon." I wonder if all my friends and teammates understand how uplifting and powerful their cards and messages have been to me. I've said "thank you" hundreds of times since June, and I've written thank you cards, and I've sent thank you e-mails. So much so that two friends told me, upon delivering a meal and many thoughtful items, "no thank you card." But, but, but... okay, thank you.

The first thing I think of when I think of my friend, is the images and sounds of her three foster kids singing and dancing to the Frozen songs on our sideline. As someone who always wanted a family but who isn't married and doesn't have biological children of her own yet, my teammate took in three children to create her very own foster family. From what I understand, she is undergoing the process to adopt them as well. And they are related, two sisters and a brother. She has kept them all together. All in the same year that her Dad has been struggling with lung cancer. How great a gift has she given those three kids, I hope they say thank you to her everyday.

"Maintenance" chemo, day 1

• First day of Xeloda

This morning began a new treatment. Having read through countless blogs and on-line resources about the side effects and what has/has not worked for people... I felt ready. I got up early and took my nausea med, I made breakfast an hour later, and then 30 minutes after that I took my Capecitabine (otherwise known as Xeloda). I lathered up my hands and feet with Udderly Smooth. I've had a light mid-morning snack and I'm on my second bottle of water. And I hope to make my way to the gym after lunch for some treadmill walking.

If it's a timely and prepared routine that might help me get through this, then a timely and prepared routine it shall be.

Conversation

• Attended an evening group meeting called What Are You Afraid Of at the St. Louis Cancer Support Center for young adult cancer survivors

Tonight we attended our first "conversation", it was specifically for young adults with cancer. I'm still young for 2 more years! I should preface this post with the fact that I had been introduced to the evening's lead speaker by my boss this past summer right after my diagnosis. We had only exchanged e-mails up to this point but he is a fellow cancer survivor and has started a charity organization, and he is somebody who is rooting for me.

So, oops, we arrived 10 minutes late (who knew that conversations start promptly on time!). But over the next hour or two, the group of around 20 cancer survivors, loved ones, and members of the cancer support center (the location of the event) engaged in a mostly light conversation about our fears. I say light because I only cried once. And these days, that's light in my book. And I also say light because there was talk of bananas going down/coming back up and farts. What's lighter than that?

The evening ended with a cooking demonstration by a chef who has classes at this cancer center. It was a dessert (a cookie!) made with dates, oats, and allspice, although this evening she added chocolate chips for fun. I accidentally forgot to grab one when the tray was passed around.

Big day

• Appointment with Dr. R M at Dr. R's office

When I woke up, today felt like a big day. I could probably say that most days, but today, I mean it really felt like a big day. Point made. Today marks the day that my treatment was expected to really change and Laura, Hector, and I were loaded up with questions for Dr. R. Checked in for blood work, samples taken, checked in for appointment, called back to room, vitals taken, waiting... for... surprise it's the NP. Dr. R just went home sick. Thankfully, I've just met with M a couple of weeks ago for the genetic testing appointment so I'm familiar with her. We hit her with all of our questions and concerns and we receive satisfying answers. We head to the treatment room but only for Neupogen, nothing else today! We head down to the pharmacy to pick up the Xeloda. Another surprise! My insurance requires that it be ordered on-line and delivered to my home directly, so there's a number for me to call for... Wednesday afternoon delivery.

A full day at Big Barnes

• Second opinion appointments with surgeons Dr. Cha and Dr. MM

On Tuesday evening of this week, I met with my friend Teri to talk through some things that were on my mind since my appointments with Drs. R and G last week. She reinforced my concerns that if *I* don't feel 100% confident, then it was within my full rights as a patient to seek another surgical opinion elsewhere. It's not that I wasn't confident in Dr. G. because I have a lot of love and respect for her. I think it was her kindness during my June hospital stay that kept me from going to the dark side. She performed my colonoscopy and implanted my super port, and I never had any concerns or complaints about either. But talk of an upcoming colon surgery and possibly liver surgery had upped the ante. I need the very best available colon surgeon and the very best available liver surgeon to hopefully get the very best possible outcome. The certified Comprehensive Cancer Center in St. Louis is Siteman, the location where Teri had her surgery and treatment. She provided me with a few numbers to call on Wednesday about getting surgical consults there. Little did I know, that I would be able to get in the very next day.

First up is my appointment with Dr. Cha (not his full name). My friend Brenda, who works in the Advanced Medicine building where my appointments are today, comes with me to this appointment. First I meet with his NP to go over my history and after she meets with him, Dr. Cha comes in. He gives off a confident vibe but seems slightly annoyed that I might be there only to get a second opinion (as I did back in June before my first surgery). He seems to mention it a few times "iiiifff you decide to transfer your care here". I provide them with a copy of my latest pet scan, that I went and got yesterday from the hospital on a cd, and my medical records have been faxed over, but Dr. Cha thinks that it would be more useful to have copies of all my scans on cds. The appointment is pretty brief, he's not sure that there would be anything for him to do with the liver at this time, based on the latest pet scan, but he's willing to be surgically available if needed.

So it's back in my car to run to the hospital to get copies of the rest of my scans. I call on my way and the cds are ready when I arrive. Then it's back in my car to go back to the Advanced Medicine building for my next appointment. I meet up with Brenda again, drop the new cds off in the surgical office, and soon Hector and Laura join us for a quick lunch before my appointment with Dr. MM.

This appointment starts much the same as the first. This time it is Dr. MM's surgical fellow who comes in to go over my history. She's read through the faxed information and seen my latest PET scan, and from Hector's computer, we share the colonoscopy report. She's smart and knowledgeable about my information and I feel comfortable talking through it all with her. She leaves and fills Dr. MM in on my story and they come in. Dr. MM questions a bit why my chemo was recently changed, since it was shown to be working. He feels that I am a surgical candidate but wonders if this is the right time. We touch on the fact that if I transfer my care, I'll likely need/want to transfer to an oncologist in their network as well. Dr. MM thinks that I should meet with this new oncologist before we put surgery on the schedule. That's the short version, it is a long and worthwhile appointment. In total, I've spent about 4 hours at the Advanced Medicine building today. Afterwards, I'm exhausted, but headed back to work for a few hours.