Radiation Mask Fitting & CT Scan

This morning I had my planning appointment with my radiation team.   I was fitted with the mask that I'll wear at each treatment and had a CT scan with contrast dye.

This isn't a video of me, but it's pretty much exactly what happened during my appointment today - watch it!



Just as the video shows, they placed the plastic mask in hot water to warm it up and then pulled it down  to fit over my face.  It was warm and wet and felt really, really weird.  The technicians then used a permanent marker to place a few marks on the mask - these marks will help them line up the radiation machine so it targets the same place each time.  Then they injected me with the contrast dye (the stuff that makes you feel like you peed your pants) and sent me in and out of the CT scanner a few times.

The mask wasn't as bad as I had feared.  I could breathe through it without feeling like I was suffocating, which was my fear.  It was a little uncomfortable since it held my head down pretty tight against the table.  I couldn't move my head at all and I almost panicked, but I did ok.  I don't want to sound like a baby, but I may end up taking some anxiety medicine for my first treatment since I'll have the mask on for longer at that appointment and since I should have a ride that day (I think my dad is coming with me).

This isn't mine, but mine looks just like this.  I'll try to get a picture of my mask at my next appointment!

At today's appointment, the technicians also showed me where I'll go every day for my treatments.  Each day I'll go to the radiation waiting room, change into a hospital gown, and wait.  Each treatment should only take about 15 minutes.

Now that my planning appointment is done, the radiation oncologist and technicians will finish planning my treatment (which should take a few days) and then they'll call me to schedule out all of my treatments.  My first appointment (which will hopefully be next week) will take longer than the rest since they'll make sure I'm positioned correctly and make a few more marks on the mask.  Many patients have permanent tattoo marks placed on their bodies - the technician says they may not have to do that with me - they may be able to place all marks on the mask.  We'll find out at my first treatment.

That's about it for today!  In other news, Josh and I have just booked our vacation for December as a celebration for completing all my treatment!  We're planning on staying in Clearwater Beach, Florida for a long weekend and spending a day at Universal Studios in Orlando.  We are so excited!!

Until next time!

Love,
Melissa

Meeting With My Radiation Oncologist

This morning I met with my Radiation Oncologist for the first time.  His name is Dr. Dugan and he's very nice!

I'm planning on a more detailed post on what radiation is, how it's given, why it's used, what it feels like, etc.  So stay tuned for that in the next few days!

I have an appointment on Wednesday morning for what they call planning.  At my planning appointment, I'll have another CT scan (with contrast dye) of my neck.  The radiation will be focused on the part of my neck where the tumors used to be.  So the doctor will overlay the new CT scan with the CT scan done before treatment to see where those tumors used to be and therefore where the radiation needs to be positioned.

I'll also be fitted with a mask similar to this (but will only cover my face - not the neck):

It'll be custom fitted to my face.  The purpose is so that my head is in the same position for each treatment and stays there during treatment.  Honestly, I'm having a teeny bit of anxiety about this mask. I don't like things covering face and I'm nervous it'll make me feel like I can't breathe.

After this appointment (which should last a couple of hours), the doctor works with a dosimetrist (radiation planner) to create a 3-D computer model of the treatment area and plan out the treatments.  This typically takes 3-7 days.  Once complete, they'll call me to schedule my treatments.  The hope is that my first treatment will be at some point next week, likely mid-week.

My first treatment should last 45 minutes or so.  The doctor will make sure everything is fitted and lined up correctly.  They'll give me "treatment markings" at this time as well, which will help them line me up so the radiation is done in the same exact spot every time.  Many of these markings will be done on the mask, some will be done on my skin.  I'm not sure yet if I'll have to have permanent tattoo markings, or just with a sharpie.  More on that later this week.

The first treatment will be the longest, each treatment afterwards should only take about 20 minutes.  The radiation itself is only given for about a minute - most of the appointment time is spent preparing me for treatment.  I should learn a little more about this on Wednesday and I'll be able to share more once I actually have a treatment!

Side effects should be fairly mild and include skin irritation similar to a sunburn and fatigue.  Radiation (like chemotherapy) kills all cells - both good and bad - so my body will be working overtime to rebuild these cells.  So fatigue will stick around for awhile.  There's a chance I'll have some soreness in the throat on the left side (where radiation will be).  Otherwise, the doc says I shouldn't experience many other side effects.

Secondary cancer is a risk of both chemo and radiation.  Doc says it's not common, but still a risk.  Thankfully I only had four chemo treatments and will have a fairly low dose of radiation, so the risk for me will be small.

That's it for today.  I'll update again after my planning appointment on Wednesday!

Love,
Melissa

Nose Hair

Fun fact... when you lose your hair as a result of chemotherapy, you also lose your nose hair.

Fun fact... you have no idea how much your nose hair does until you don't have any.

Word of caution... do not Google "nose hair" to try to find a funny picture to add to your blog.  It's disturbing.

My nose is like a leaky faucet lately.  And I sneeze a lot more than usual.  Unfortunately I've caught a little bit of a cold, which only makes the problem worse.  I carry kleenex with me everywhere.

Speaking of catching a cold, the doc says I need to watch out.  Bleomycin (the B in the ABVD chemo regimen I received) is very hard on your lungs.  Having a cold could cause inflammation of the lungs or even an infection in the lungs.  It's not likely, but I need to let the doctor know if I have a cough that lasts more than two weeks.  If you recall, I had a pulmonary function test (lung test) before I started treatment and my lungs measured at 107% strength.  Considering I only had 4 chemo treatments, I'm pretty sure I won't have any issues with my lungs, but the doctors are being cautious.

My mother- and father-in-law are coming in to visit this weekend!  Should be a fun weekend of catching up and celebrating Wednesday's good news!

With Josh's parents on our wedding day - May 21, 2011

I'll meet with my Radiation Oncologist on Monday morning, so I'll give you all an update after I meet with him!

Love,
Melissa

PET Scan Results

Cue Destiny's Child 'cause I'm a Survivor!!

My PET scan showed that all my tumors are gone!! I'll meet with my Radiation Oncologist on Monday to schedule out my radiation treatments. I'll do daily radiation treatments for 2-4 weeks to kill any residual cancer cells that may still be lingering.

I'll get my port removed before the end of the year. I'll follow up with my oncologist in 3 months just to check in. Then I'll have another scan (probably just a CT scan) 3 months after that (so, 6 months from now).

We are super excited and are ready to celebrate!! Thanks for everyone who sent messages and prayers today!

Love,
Melissa

PET Scan and Dreaming About Vacation

PET scans are boring.  Really boring.

I had one today.  Here's how it went.  After I arrive and check in at the Cancer Center, I am taken back to a small private room with a reclining chair.  I'm stuck with an IV and injected with radioactive sugar.  And then I sit.... For 90 minutes....  Without moving.....  Apparently cancer loves sugar, so cancer cells will suck up as much of the sugar as it can.  Since the sugar is radioactive, the PET scan will highlight where the cancer cells are (if there are any).  Unfortunately muscle use can attract this sugar as well, so if I was to, say, wiggle my leg during that 90 minutes, those leg muscles could attract the sugar and show a "false positive" on the scan.  So I have to sit as still as possible.
Thankfully I'm allowed to use my iPad and phone during the wait, so I played a LOT of Candy Crush :)

Ok, so after 90 boring minutes they take me into the scan room.  I lay down on a hard table and they literally strap me in.  There's a strap that's about 12 inches wide that goes across my body and over my arms and one strap across my forehead.  Once I'm strapped to the table, the scan begins.  The PET scan machine is basically a 4 foot long tube.  They send me into the tube until about half of my body comes out the other side.  Then every 4 minutes, they pull me back into the tube a few inches until my whole body has been scanned.  The machine is actually pretty quiet, it just makes a humming noise.

The scan takes about 45 minutes.  No iPad, no music, just me and my thoughts.  So today I was day dreaming about vacation during my scan.

Josh and I are saving money to take a mini-vacation in December when I'm officially cancer-free and all my treatment is complete.  Our original plan was to spend a long weekend in Key West (our favorite vacation spot), but flights are crazy expensive in December (over $500 a piece!).  So I think we're going to try Marco Island or Fort Myers - or some other southern Florida city.  Still working out the details :)

Over the last several months, we've been saving up and stashing away as much money as possible so we can take this trip.  We each got small bonuses at work, so we put that money aside.  Josh has been working overtime and has also been packing his lunch instead of eating out.  We have been working very hard to make sure this trip can happen.  We also have a few hundred dollars in Cash Back from our Discover credit card that should be able to pay for a majority of a car rental and hotel room.

Is this the best use of our money?  You may not think so, but to us it definitely is.  We're a young, newly married couple who's been dealing with a crappy situation.  While this ordeal has definitely strengthened our marriage, we desperately need the time away!  We need to get away, forget about cancer, have fun, and be a married couple again.  This trip is important to us and we're very excited about it.

On Wednesday, we have an appointment with my oncologist to get the results of today's PET scan.  Assuming the scan shows my tumors are gone (which we fully expect!), I'll be officially done with chemo!  I'll meet my radiation oncologist next week to determine the amount of radiation needed, which should be between 2 and 4 weeks worth.  So if all goes as planned, I'll be done with treatment by late November and Josh and I will be on a nice little vacation in mid-December!

I appreciate all the kind words, positive thoughts, and prayers.  It'll be a LONG couple of days waiting on those results.  I hope Wednesday gets here soon!!  Our appointment is at 2:45 p.m. on Wednesday, so check back that evening for the results.

Love,
Melissa

Open Letter to Sephora

Dear Sephora,

Yesterday I visited your Keystone store in Indianapolis, IN for a makeup consultation.  I don't usually wear much makeup and I've been fortunate to have always had decent skin, so I never felt that I really needed it.  I have just finished up receiving chemotherapy to treat Hodgkin's Lymphoma.  Over the last several months, the chemo has really taken its toll on my skin, so I decided to visit your store for some help.

I'm sorry to say I can't remember the name of the associate who helped me, but she was amazing!  She took her time with me and was so sweet and kind!   After months of feeling (and looking) sick, it was so nice to be pampered and to actually feel good about my appearance again.

Cancer treatment is very expensive, so I didn't have a big budget to work with.  The associate did such a great job of helping me decide which products were the best investment for me.  There were a few products that I loved but were out of my budget - she helped me find comparable products that were more in my price range.  She also wrote down all of the products she showed me so I can come back another time (when my budget's been replenished!) and purchase them.

I am so grateful for the kind folks at the Keystone store.  Everyone was so nice to me and made me feel so wonderful.  It's been a long time since I've felt that good about myself and for the first time in months I felt beautiful.

Melissa

Last Week

I completely forgot to give an update last week after my doctor's appointment!  I was so distracted (and excited!) for the Light the Night Walk, that I completely spaced it.  Sorry!

So, last week I had blood work done on Tuesday then followed up with the Nurse Practitioner at my oncologist's office on Wednesday.  As expected, my white blood cell count was really low as was my red blood cell count.  The good news was that my white cells weren't as low as they've been in the past and I didn't have to get the Neupogen shots.

Having low white blood cells means my body can't fight off infections as well - meaning I can get sick easier and could end up in the hospital since my body can't fight the infection.  I have to take my temperature several times a day while my white cells are low.  A temperature at or above 100.5 degrees would land me in the hospital.  Thankfully this never happened!  The main side effect I had was fatigue.  I only ended up working a few days last week because I was so worn out.

My red blood cells were only a little low, resulting in slight anemia.  Anemia causes fatigue and headaches primarily - both of which I experienced last week.

Your body makes new white and red blood cells every 24 hours, so by now my counts should be up quite a bit and will continue to get better every day.

As for the other side effects last week - it wasn't TOO bad.  I definitely had some digestive issues as I've had in the past.  As a result, I had a lot of pain last week.  The Nurse Practitioner gave me some prescriptions and some advice, which helped tremendously!  It's now Tuesday morning (a week after my last blood work and 2 weeks after my last chemo) and I'm still feeling some fatigue, but nothing like last week!  I felt pretty good all weekend and even felt good enough to have a couple glasses of wine last night!

Aside from fatigue, I think most of my chemo side effects are gone!  I've already been feeling better and I should continue to feel better and better as the week goes on.  Unfortunately my doc says the fatigue will last another couple of weeks.  My body is still recovering from the toxic chemotherapy and is working to heal itself from the cancer - so I'll feel tired for awhile.  And then I'll start radiation, which causes fatigue as well... so I guess I'll just be getting used to being tired all the time!  Thankfully I have an amazing employer PLUS another several weeks of short-term disability, so if I need to take a day or two off to relax and rest, I'm able to.  One day at a time.....  Almost to the end of all this madness!

Love,
Melissa

Light the Night... Success!!

Last night our team - The Holy Walkamolies - walked in the Light the Night walk to support the Leukemia and Lymphoma Society of Indiana.

The Walkamolies contributed $1,355 to the $649,500 raised to help fund cancer research and support patients and survivors of blood cancers.  The walk started and ended at Victory Field in downtown Indianapolis.

Our team picture isn't up on the LLS website yet, but here are some pictures from the walk:

Outfield message board at Victory Field

Josh and I before the walk

Sarah is really happy!

Me, Bri, and Sarah - love these girls!

Walkers leaving Victory Field

Walkers Lighting the Night!

Downtown Indianapolis

They had a star on the walk in my honor

The most amazing support I could ever ask for :)

Thanks again to those who walked and donated!

Love,

Melissa

Hair Update

Many of you have noticed that I've been wearing a lot of hats in public lately...  Well, I'm to the point where I've lost quite a bit of hair and I'm becoming self conscious about it.

More on that in a minute....  It's been several days since I've posted, so I'll first start with a quick update on how I've been feeling this week!

The word of the week has been tired.  Holy moly, I feel like I've slept away most of the week!  Doc says that's to be expected as the longer you get chemo the more it wears on your body.  That coupled with the fact that my white blood cells are likely really low means lots of sleepy time for Melissa.  The irony is that I don't typically sleep through the night.  I nap a little throughout the day (not really by choice - sometimes I just fall asleep unintentionally) and I find it hard to stay awake past 9 p.m.  But then I'm usually awake around 3 a.m.  Sometimes I'm awake for several hours, sometimes I can fall back asleep after an hour or so.  Zzzquil is my friend and I'll take it every few days just to get a full night's sleep.

Aside from superfatigue, I've not felt too bad this week.  I've had the typical nausea and lack of appetite.  Constipation hasn't been quite as bad this time around, but it's still there.  I just can't seem to stay hydrated enough, which makes me have stomach cramps and hard, painful poops (sorry for sharing).  Overall it's been an ok week.  I think it's easier knowing that this is the last time and that in a matter of days I'll be mostly back to feeling normal again.

Ok, onto the hair...  Thankfully I started this whole ordeal with a whole lotta hair!  I've always had really thick hair (which I used to complain about) so although I've lost quite a bit of it, it's not super obvious.  Here's a picture:

You can tell it's pretty sparse, especially at the part, but it's not too terrible.  Unfortunately it's coming out like gangbusters right now.  My house is covered with hair!  We got a cover for the drain so I don't clog the shower.

My hope is that the hair loss will slow down over the next several days and by this time next week be just about done coming out.  Just wishful thinking, I'm not really sure :)  Good news is that the radiation shouldn't cause much hair loss except maybe just a little bit where the radiation rays will hit on the nape of my neck.  I *should* be able to get away with not shaving my head, so if I'm wearing a hat I'll look normal.

To be honest I'm not that concerned about looking like a cancer patient with a shaved head.  I'm more concerned about the 12-24 months of it growing back in and looking awkward.  So if I can keep some of it and not shave it all, I will.

So for now I'm buying hats and making the best of it :)  Oh, and I'll NEVER complain about my thick hair again.  Or about having to blow dry it, or about a bad hair day.  I'm looking forward to long, thick, beautiful hair again!

I've got a bunch of stuff I'll be sharing this week, so stay tuned!

Love,
Melissa