My Hair!!!

So, I met with my oncologist this week, he told me how great my PET looked (thankful) and just like the nurse had mentioned- said he rarely ever sees the word REMARKABLE on a scan. So, that is good news.

Then he gave me a slip to give to the front desk- I'm scheduled to see him again in OCTOBER. It's kind of freaky. I've been going through this since January, then I'm kicked out into the real world. I didn't expect a big goodbye party from my medical team or anything- but geez!

I still have almost three weeks of radiation- but that will end soon. I'm preparing myself for no appointments, no doctors- until October and it's a very emotional, helpless feeling that you'll be doing NOTHING to keep the cancer away like you were before. I just have to trust that it's gone... and I'm fine with that.

This is a very ugly picture of me- playing with Noah two months ago:



This is my hair now:


It's coming back full force! I have to say, several other survivors at the center comment on it every day when I'm there for radiation. "Hi, you don't really know me...but when did your hair start growing back? I still wear scarves and have no eyebrows... how long did THAT take??" Well, I feel fortunate- I've always had a ton of hair and I'm glad it's dark again and...while it looks ridiculous... it covers my head now!

So, baby steps. Radiation tomorrow as usual at 8am. Did I mention the horrible, horrible storms in St. Louis BLEW OUT my radiation equipment so for the last two days I've been scheduled and rescheduled again for treatment? It was pretty nuts. But now I'm onto my 8am every day schedule and all is well. Die cancer cells... die!

Rads

One of the radiation nurses told me last Thursday's appointment was for even MORE preliminary scans and xrays. Well, it was- but they also gave me a treatment and told me I had to be back the next 17 days in a row. Because, it's not like I have a life or anything. On the flip side, because of these treatments I DO have life so I won't complain too much.



The black square looks like some funky futuristic TV and there are neon green lights shooting out of the walls of the actual room. The actual radiation comes from above my head- then the machine (3 inches in front of my face) rotates around the table and radiates me from underneath as well.

Once they line me up by my tatoos (which takes longer than the actual radiation) they get the heck out of there and the green lights shooting out of the walls make a grid in the room they that are viewing from their area. I have to stay very, very still or they will mold one of those horrible face masks for me and bolt me to the table. So, I can't tilt my head or look at these weird lights but I can see their reflection in the machine above my head. It's pretty freaky. The grid on my body made by these lights just helps keep me lined up. The spinning of the machine around me made me a little motion sick the first time because it felt like I was the one moving.

It's painless and quick. I will go in every morning (17 sessions) and put on a robe in a dressing room. Then they remove the robe, and I lie there self conscious and praying a fire doesn't break out...with me in no clothes. They line me up, run out of the room, the futuristic bright green lights come shooting out of the walls and all the buzzing and loudness of the machine begins. Then it rotates around me as I basically hold my breath to lie still. They drew on me again to have a picture of the exact areas being radiated in my file. It's my 'mantle.'

Me looking freaky in a tank top. I went to McDonalds and the car wash like this.


They radiate from under my chin...down my neck and into my chest as you can see. The circle in the middle is simply a tattoo...but it isn't that big. The technician circled the tattoo the first time so she'd be sure not to miss it.

So, my throat is going to get very, very sore. They told me to expect it to be worse than any strep throat Ive had. From the two treatments Ive had it's started burning and I've been forced to chug down ice cream (FORCED I tell you) so I know they aren't messing around. In the next week they'll give me something to help with pain.

I have a very special 'back' entrance that I use each day. I feel so VIP and A-list. :) It actually helps mentally because I don't have to walk through the whole center and pass my chemo room. Yuck.

Have a great weekend everyone!

Stay Cay

We had a bit of a stay-cation last weekend. I don't usually let myself fork out money for things around town every single day, but I figured we won't be traveling for quite a while so what the heck.

One night I took the three kids to see Toy Story 3. Noah still isn't that into movies but he did pretty well. I felt really stupid for crying at the ending of a cartoon movie. Then I looked to my left, and to my right- and two other mothers were sobbing into Kleenex. Yes, it was technically a happy ending but as a parent it was miserably hard to watch.

The next evening we went to a pool/water park in a nearby suburb that charges half off for 5pm and after! This worked well considering Daniel was off work at 5pm and met us there. Then we went to Cheeburger Cheeburger where you get your picture on the wall for eating the GINORMOUS cheeseburger. This time, none of us ordered it although we could have and just split it between the five of us.



This is only a MEDIUM sized burger and it took Daniel three days to eat it


Then on Saturday we swung by the White House where Noah gave a presidential address


And hung out in the Oval Office:


Get me somebody. Anybody.


Then he was on trial... by Judge Kayla


I'm innocent! All the microphones really work and his voice was BOOMING over the large, mock courtroom.


Ok, it wasn't Washington. It was the Magic House...just about the coolest place ever for kids. Kid's Construction Zone


Kayla designing a house.


An entire level of Green exhibits and activities, this one teaching us how to eat healthy and shop at Farmer's Markets for fresh fruit.


Five minutes after arriving Noah sliced his arm open on a conveyor belt showing children how to recycle. Not so healthy.

The three story high Jack and the Beanstalk exhibit.


And we got to dress up as Tom Sawyer and paint the fence




We worked on cars and played in TONS of water inside and out:






Fishing




Making bubble music


There are too many fun things and pictures to post here. A fun and exhausting weekend!

I Got The Call

The cancer center always prepares me to wait several days for test results but then they always have them in 24 hours. Cancer has actually kind of spoiled me.

My phone rang at 8:05am with their number. I thought it was odd and the message stated I needed to schedule an appt. for more preliminary radiation work. Then the chic said "And we have your PET results."

Holy crap. Luckily Daniel went in late today so he was home. I worked up the courage to return the call and put it on speaker. This is how I remember it:

Radiation chic- "Can you come in Wednesday at 1pm to get set up for radiation?"

Me (in a daze)- No, but I can come in any time on Thursday. Is this the start of radiation?

Chic - No, it's more work to get you set but you need to get in soon. Thursday at 1pm will work.

Me - Ok.

Chic - Your PET results are in and I've given a copy to your doctor to review with you. The note from the radiologist that read the scan states "REMARKABLE REGRESSION."

Me, beginning to sob- Is it gone?

Chic - I hope you're crying because you're happy!! Are you there? Are you crying because you're happy?

Daniel - She's here. What does this mean?

Chic - I've never seen a radiologist take the time to write 'remarkable' on a scan before. She's had an extreme response to chemotherapy. Of course she still needs radiation to clean everything up but I hope she's crying because she's happy.

That's all I really remember. I didn't think to ask if I got the NED label, or can officially mark this date as the day I'm considered in remission. Either way I certainly won't forget July 19th. I'll ask when I see them this week, and of course my doctor will go over the scan with me on the 27th when I see him.

So, emotions are running high today. Yes, of course I'm happy; I'm in disbelief and the weight of the past six months has crashed down on me a bit today. This is all good news and I'm processing it, that's all.

I told some of my lymphoma friends online and one of them (my age, similar treatment and diagnosis as mine) responded:

Cathy,
I'm so happy for you! I've read your blog and you've had such a disaster with chemo. I hope rads is a snap for you.

I'm not sure why, and I'm a little loopy today emotionally but this made me laugh quite a bit. A disaster.... I hadn't thought of it that way until I read that! But now that I think of it, this has not been fun!!

For being such a 'good' cancer, I've certainly met my share of people that didn't get this good news. I'm thankful our prayers have been answered and thank all of you for your part in that. I have a zillion questions for my medical team but am 100% thankful for today's news. :)

PET

More testing today. I can do without the constant metal taste in my mouth from the various dyes, contrasts and saline of the past few days but other than that all is good.

I had forgotten how lengthy PET scans are. It took 2.5 hours and my poor stepdaughter was stuck rereading Highlights in the waiting area. She found the toaster in the tree 127 times.

I hope to get results next week, but again I'm not sure my radiation team is really going to take the time to sit down and go over them with me. Pray for NED... NO EVIDENCE OF DISEASE!!!

Tonight a quick McD's dinner and board games. I'm trying a homemade granola recipe from April's site and I hope I don't mess it up!

P.S. I think the Bonsai is still alive. I'm working hard on it. Happy Friday!

Radiation Simulation

Good News- I don't need a face mask!

They will be radiating low enough on my neck that it should not involve the area under my chin or face. I was extremely relieved that I don't have to go through the mask building process, and my team was happy as well!

Today they did several CT scans to see how my cancerous areas look. They used the oh so familiar contrast that leaves a horrible taste in my mouth for 24 hours. They were able to inject this through my port so I'm still getting use out of it. I did NOT enjoy being in the chemo room to have my port accessed, but it was good to hug all the nurses!

They drew all over my torso, chest and arms with a permanent marker. Then they gave me the tatoos. I have four right now and they basically look like moles. They used a needle, then injected the ink on my arms, chest and stomach area. These tattoos will be used to align me correctly for each treatment, but do not designate the radiation field. So, I think I'll be getting more tattoos soon.

I go back first thing tomorrow morning for another PET Scan. They have to get a clear picture of everything to proceed with treatment planning. I hate all these scans of the past six months, but I'm thrilled to get an idea of how chemo worked! The radiation team really only uses the results to plan treatment, so I'll probably have to wait to ask my questions to my oncologist that I see late in the month. IS IT ALL GONE???? I just need to hear it from someone, please!

So, everything I'm doing now is preliminary work for radiation to begin. They told me they will be building my plan into next week so I'm not sure when my treatments will begin. Likely next week or the week after. Daniel and I feel like we're dragging a bit, but this is all needed to get me the best treatment possible.

Now after all the chemo of the past several months, my body starts dragging about 8pm. There are nights I'm in bed the same time as Noah! It will be interesting to see how radiation effects me. Fatigue is common but you never know- I could sail right through!

So, if the weather cooperates we will spend this weekend outdoors! Skin sensitivity is very common- and I can't exactly wear a turtleneck to the pool- so we're trying to get out while we can!

Early scans tomorrow morning and I'm feeling a bit run down. Off to bed!

Radiation Mask

I'm a little nervous about the radiation simulation this week. The doctor told me to 'gear up' and bring my husband if I'm at all claustrophobic because I'm basically nailed to the table for an hour and unable to move. The pictures, scans, body molding and face mask don't help.

I've asked a few of my cancer survivor friends about it and they've all reported it's one of the most miserable parts of treatment. I found this picture through the Mayo Clinic. It's not only the mask they'll place and mark for the simulation, it's what I'll have to wear for treatment every day.

It's bolted to the table!


Not thrilled about that. Some don't have eye and mouth holes, but I'm told I can request them to be cut. This is gonna be great.

Posts

Hello!

I didn't realize it has been so long since I last posted! We had a death in the family and traveled out of town for the services. Daniel's grandma would have been 88 this month and we're sad to lose her.

While out of town my cell phone rang repeatedly from my cancer center so I thought for sure I'd missed an appointment. I couldn't answer it and never thought to call back until it was too late in the evening! I spoke with them today and they were just trying to rearrange my next appointment. I go in this week for the radiation fitting so I'll let you know how it goes! I'm ready to get started....and get this part over with.

I hope everyone is having a great week!

Bonsai!!!

I have to say, the last six months I have received some pretty unique gifts. I've been given extracts and yummy potions to boost immunity, cakes, cookies, clothes, jewelry and gift cards. But today's gift scares me a little.. in a good way.

It's a Juniper Bonsai. I feel like I stepped right into the (original) Karate Kid movie.



How cute is that? Here's the thing. My thumb is so white it glows in the dark.

The directions tell me I need to work on insect control, (mites) fertilizing, pruning and root pruning. I don't know what half those words mean. "A fundamental principle in developing dwarf trees is that the tree branches should be pruned to conform with the limited space available for root growth." I pray I don't kill this thing.

Thank you Charlotte for the adorable tree. I'm going to hone a new skill. And beg my 12 year old agriculturally gifted step daughter to teach me everything she knows.

Speaking of pre-teen girls, I caved and saw Eclipse last night. If you've lived under a rock until now, that's the third movie in the Twilight vampire series. I saw multiple 50 year old women in bedazzled TEAM JACOB and TEAM EDWARD shirts and it wasn't even opening night. Key word- bedazzled. A few of them lit up! Grown adults were bringing in homemade popcorn containers encrusted with I WANT TO BE A CULLEN. And did you hear about the woman that totaled her car two nights ago- claiming she saw a vampire in the middle of the road?? Craziness.

Here's my question- what's so great about Bella and why do all these so-called hot guys want to be with her so badly? I've only seen her pout, sulk and whine habitually. Is that a snapshot of today's youth because I don't see my teenage niece and nephews behaving that way! At least not habitually :)

Why is her father letting her date a (also pouty and sulky) boy that SPARKLES in direct sunlight, and another boy that doesn't own a shirt? My dad would have been on the porch with a gun if I had pulled up with either of them. I must be getting old.