Loonybin Lovegood

Dr. Marcus (Luna Lovegood) said that I will now be starting radiation on January 11th.   After discussions with doctors at the University of Michigan, she has decided I will need a special machine that needs to be callibrated and tested over a weekend before I can start.    This machine will be able to distribute different levels of radiation to different parts of my abdomen at the same time.   That way I will get the maximum dose where needed and lower doses on important organs. 

On Wednesday I went in to Brigham and Womens Hospital in Boston for "planning."   During planning they scanned the area of my body that will get radiation.   They also gave me 4 small tattoos that will enable them to line up the machine in the same place every time I am treated (every M-F for 5-6 weeks.)   I got me some fine-lookin' tats. But no, they're not tigers or cupcakes. They are more like freckles.  

I'm told that each radiation session will just take 15-20 minutes.   I will lie down on an uncomfortable table, they will line up the machine with my tats, and then radiate.  

The results of my scans from Tuesday (MRI and CATscans) showed that I have no new growth in my abdomen, but I do have some new tumor growth in both of my lungs.    I now have 2 tumors in my right lung and 4 in my left.   They are all still relatively small.   The radiation will only help my abdomen, so after 5-6 weeks of that treatment I will need to go on chemotherapy stat to slow down growth in my lungs.  

Leaving on a positive note, I had some time to clean my room and it looks beautiful! 

Everyone be safe tonight.   Happy New Year!   

Instructions: Microwave Until Properly Radiated

Wednesday we met with Dr. Edgar Ben-Josef, an oncology radiologist that works with ACC patients. I got this question the other day so I'm just going to clarify the difference between radiation and chemotherapy. Radiation is killing cells in a particular spot of your body (there is machinery that can target a section of your body to kill those cells, both good and bad.) Whichever cells are radiated are killed. Chemotherapy, on the other hand, is poison that kills fast growing cells, not only tumor cells but also cells such as hair, nails, and white blood cells (suppressing one's immune system.)

Anyhow! Dr. Ben-Josef has had success radiating tumor beds of those with ACC to kill any microscopic tumor cells that may be left behind after surgery. A tumor bed is the area where one's tumor was before surgery. He also reccommended radiation on the three nodules, small tumors, in my lungs. He said that radiation could kill those tumors without having to go through another surgery, although anyone who knows me knows I love surgery because anesthesia is the best thing everrrrr.

The doctors don't want me to have many more surgeries because they suspect I have a lot of scar tissue as it is, which is a problem. They described the scar tissue as bubblegum that my surgeon (of whom I believe to be God himself) would be cutting through and not know where the gum ended. In conclusion they don't want God, aka Dr. Weldon, to pop my lung. That would be a bummer.

PLANS FOR NEXT WEEK:

Tuesday - Meeting with Dr. Weldon to see how well I'm healing since the last surgery. I'm also having an MRI and a CT scan to have a baseline before radiation begins on the 29th. They use these baseline scans to compare them to scans they will do later on during my treatment to see if the tumors have decreased in size or stayed the same size. That would mean radiation is working.

Wednesday - Planning session with radiology (It'll be a blast. My radiologist is like a grown-up version of Luna Lovegood.) I'll be getting three tattoos to line up the radiation machines so the radiologists can make sure they're radiating the same spot every time. My very first, and last, tats, WOO!

Thursday - Radiation begins! This radiation will be Monday thru Friday every week for five weeks straight. The side effects of radiation aren't quite as bad as chemo, but I'll progressively become sleepier with every treatment so I am apologizing in advance for not talking or texting or typing as much as I usually do.

We flew home from Michy today and it's so nice to not be in a hotel room, even though I think it was nice to get a break from my boring daily routine. I'm looking forward to the holidays because I got everyone really funny gifts. :o)

Happy 4th night of Hannukah, & Merry Christmas Eve's Eve!

Welcome to Michigan

I am officially in Michigan! My parents and I went to the University of Michigan in Ann Arbor and met with the famous Gary Hammer, world renowned specialist in Adrenocortical Carcinoma. In fact, a team of doctors met to review my case specifically in what they called a "Tumor Board Meeting." It was really nice (and relieving) to hear opinions on my case coming from people who have seen many similar patients with my disease (to hear from people who knew what they were talking about.) I was happy that Gary had strong feelings about my treatment plan moving forward.

Place and Janeway had originally suggested the radiation plus 5FU, then Gemcitabine and Capecitabine. Gary dismissed the 5FU right away, explaining that it wasn't used with ACC patients. He also felt that, instead of Capecitabine, Taxotere would be a more reliable chemotherapy used with Gemcitabine to fight my cancer. Another treatment possibility would be Streptozocin, but we weren't able to talk about this chemotherapy specifically as it is given in many different ways. As far as radiation goes, he wants me to recieve Stereotactic radiation. This method of radiation allows the doctors to radiate a certain area of my body without killing all of the cells in other areas that the radiation would go through.

Dr. Hammer found it curious that I am taking Dexamethasone, a generic cortisol, when my tumors are already overproducing cortisol. (Dexamethasone is one of my many daily medications at the moment.) Too much cortisol in the body is called Cushing's disease, and has bad side effects. Right now I am only experiencing roundness of the face, increased appetite, and bad migraines that have been lasting for 5+ days.) He wants to take me off of any generic cortisols and give me a cortisol suppressant called Metyrapone. If I do need cortisol, Gary recommends a medication called Hydrocortisone. It is the very same steroid our bodies produce, and the dosage would be easier to adjust than the dosage of Dexamethasone is.

Tomorrow I will meet with another oncologist, Frank Wardon, and a radiologist, Edgar Ben-Joseph, of whom are both on Hammer's team. We will discuss more of the specifics with these doctors, especially Frank Wardon because I would like to know how the Streptozocin is administered. Overall we had some great meetings today and I feel much more relaxed knowing Dr. Hammer will be fighting with my team in Boston and I for as long as this lasts. He did, like Place and Janeway, refrain from using the word "cure" and stick to the idea of "prolonging" my lifespan... but I'm still optimistic. I'm not a statistic, and hey my body likes to fight under pressure. :) I'm looking forward to tomorrow's meeting.

A Little Last-Minute Preparation

I met yesterday with my oncologists, Andy and Janeway, for the last time before I leave for Michigan to sign off on a chemotherapy plan. The plan says that I will begin radiation on December 29th, and while I am on radiation I will be on a chemotherapy they're calling 5FU (great name, right?) I will have my port accessed on Monday, and be given a tiny pump that I will carry around for five days that will continuously give me chemotherapy through Saturday. On Saturday my home nurse will de-access me. This is nifty - I won't need to be admitted to the hospy to get treatment!

In short, I'm getting tattoos for my radiation accuracy on the 28th. This is called "planning." Then radiation will begin the following day, the 29th! Chemotherapy #1 starts January 3rd. That's all we know right now!

I'll be in Michigan next week. Hopefully the doctors there will agree with the treatment plan we have come up with in Boston. I'll be able to post more information then. :)

Ho Ho Home!

One thing I've learned about being discharged from the hospital: If the nurses tell you they'll have your paperwork ready to go at 11:00 AM, they really mean 1:00 at the earliest so you might as well take your time packing up.

Discharge day is a pretty normal day in the hospital - the nurse draws my labs, takes my temperature and blood pressure regularly, monitors the oxygen saturation in my blood, records the exact amount of food I've eaten and water I've had to drink, and of course supplies me with my daily medications.

When it was time to go the nurse came into my room with my paperwork, of which is essentially a list confirming what medications I am on and which medications I will need prescriptions filled for at CVS. Then I sign this list and we can officially leave the hospy! We got home yesterday around 4:30. I was so happy to be home, it still feels like I haven't been here in ages! I know I should rest or something, but I really want to bake. Resting...baking... yup my decision is clear, holiday baking begins today! 13 days til Christmas!

Our New Holiday Plans

Today I met with my oncology team to discuss what to do from here on out.   My team is composed of two main people, Dr. Katie Janeway and Dr. Andy Place.     Katie is the head-honcho, my attending oncology doctor and Andy, medically referrered to as the "Fellow" is my personal guru.  Both of my parents came in today and the five of us found a big conference room to talk privately in.  I was able to take a shower today and wash my hair so I decided to sit at the head of the table, because who wouldn't want to check out these lovely locks? I mean let's be honest here.  

Anyhow, Katie and Andy brought in two things for us to look at:  their recommendations for treatment and a possible clinical trial.    The treatment would include radiation therapy and chemotherapy.   My understanding of radiation is you lay on a metal table and they point some machines at the diseased sections of your body.  There will be side effects to the radiation that will probably include nausea and skin irritations, etc.  The radiation therapy would be every day, Monday through Friday, and would last 4-6 weeks. I've never undergone radiation before, so this'll be a treat!

Chemotherapy is typically given in cycles.    A "cycle" is a period of time in which the chemotherapy is given.   This new chemotherapy treatment will be given in 21-day cycles.   The chemo will be given intravenously and also orally, in pill form.   The IV (intravenous) chemo is given through my port.   The port is an IV line that is surgically placed in my chest. It was placed last Friday during my surgery.  My port allows me to recieve transfusions of platelets and red blood cells as well as my chemotherapy without the worry of my veins collapsing. I also only have to be pricked, or accessed, once every week.  I will recieve the IV chemo on days 1 and 8 of each cycle and will take the oral chemo medication every day.   One of the oral chemos is called mitotane, of which I've already been taking every day for somewhere around 18 months now. 

The clinical trial presented to us was called the "Seneca Valley Virus" and is a phase 1 trial.  Clinical trials are used to test and approve new drugs.  There are four phases of clinical trials.   In a phase 1 trial,  doctors are trying to figure out what dose of medication a patient can handle and what the side effects might be.    This trial seems promising for adrenocortical carcinoma, but I can't be in the trial and treatment at the same time, so I need to choose which one I will start with.   

We've booked flights to travel to the University of Michigan Cancer Center to meet with Dr. Gary Hammer later this month.   We'll check my treatment plan with him as well as gather new information.   After that I will decide what my treatment plan will be and probably start it right after Christmas.   What a wonderful present!

Last week this was all up in the air so I'm relieved we have a plan now!   I think it is safe to say that today's meeting was a success. :)

Fortunately, Unfortunately

I was hoping this morning to finally be cleared to drink liquids, but I was only approved for 1/2 ounce/hour.    My mom brought in my favorite watermelon ices and put them in the hospital freezer.   This morning we went to get one and someone had taken them all.  I haven't had anything to eat or drink since last Wednesday!   I'm getting very frustrated as the days in the hospital become longer.   Time for a jail break.  

On the positive side, I had physical therapy today and walked a few laps around the hospital floor.   Tomorrow they will remove my epidural, which is working so well, and I will have to adjust to new pain medications.  For those not familiar with an epidural, it is a needle placed in one's spine that delivers medication to control pain during child birth and abdominal surgeries.   And yes, they will take this out while I am awake!   A pleasant image, right?

Unlike breast cancer, or leukemia, not many people have heard of adrenocortical carcinoma.   It is very rare and there are not many experts.   The only two I know of are one that focuses on children in Boston and another that focuses on adults in Michigan.   We'd like to travel to the University of Michigan to get a second opinion on my next treatment.   However, I probably won't be released from the hospital until next week, and I won't feel well enough to fly to Michigan right away.   This causes a dilemma -  I need to start treatment as soon as possible so the cancer doesn't grow right back.  In fact, I've been wondering about that third (suprise) tumor they found during surgery on Friday.  Was it hidden by the other tumors on the scans, or did it grow within the two weeks since my last scan.  If so, it's growing quickly.  

I have been very agitated.   I know this is partly because of my circumstances, but also largely because of the change in my body's chemistries and hormones.   Because I have adrenal cancer, my adrenal glands are no longer working and they produce steroids that control my hormones and adrenalin.   So the doctors are giving me steroids to keep my body balanced.  On top of that, my tumors were producing a ton of steroids and now that they are gone everything needs to be rebalanced.   This affects my moods and patience.   Mom bought me a funny magnet that sums this all up: "if you mess with the kitty, you'll get the claws!"  

I miss you all!  Meow.

Relapse

During my Junior year of high school I was diagnosed with Adrenocortical Carcinoma, cancer of the adrenal gland. After over a year and a half in the Intensive Care Unit, recieving chemotherapy both orally and intravenously, and going through multiple surgeries I was finally decleared N.E.D. (No Evidence of Disease) and graduated with my class Senior year. :)

This year I've been at Quinnipiac University in Hamden, Connecticut, majoring in psychology. On Nomember 22nd I went into Children's Hospital Boston for my routine three-month MRI and CT scans. These ensure that my Adrenocortical Carcinoma hasn't returned. Before college I had my scans done in August and we had seen "spots" on my lungs, but weren't quite sure of what they were. Obviously I was hoping they were just pieces of scar tissue from one of my previous eleven surgeries. Apparently not!

Three tumors were found where those spots had been - two on my right lung, one on my left; and two new tumors had shown up in my abdomin. My cancer had originally grown in my right adrenal gland, hence the name Adrenocortical Carcinoma. One of the new tumors was right there on the location of where my right adrenal should be (it was removed my Junior year). This tumor was approx. the size of a cantelope. The other tumor was found wrapped around and inside my right kidney, so my right kidney was removed. This most recent surgery was on Friday, December 2nd, and was 12 hours long.

Tonight I am headed out of the ICU and onto one of my favorite floors, 10 South! Hopefully I'll only be in the hospital another week or so before I get to go home and start some online Christmas shopping.