Tuesday, June 26, 2012

Only smart people get cancer

Today I went to see Dr. Brockenbrough, my ENT for a follow up appointment on my neck surgery.

This is Dr. Brockenbrough in action:

                                                   hehe! I have a doctor that sings!

 It seems to be healing really well and I was cleared to start going to the gym again, which is great. I missed working out this past week.

When Dr. Brockenbrough came in he was being shadowed by a general practitioner doctor. He asked for my story about how I first realized something was wrong. I explained I had felt the swollen lymph node on my neck and went in to see my general practitioner who did blood tests and a chest x-ray. Those simple tests led me to my diagnosis and I am very grateful that my doctor was on top of things and didn't put off my symptoms.

Dr. Brockenbrough explained to me as well as the other doctor that Hodgkin's Lymphoma was a very treatable cancer and can almost be cured for most people. He then told me that Hodgkin's patients are smart and successful people. I laughed, but he went on very seriously explaining that it seemed to focus on people who were living life to the fullest and were successful in their professions.

Well.   How bout that?

Here I was venting about how stressed and overwhelmed I was, but really I am just smart and successful! ;)
But seriously, it was quite a nice thing to say, and from the other Lymphoma blogs I have read and the other people I have met who have had Lymphoma it seems pretty true actually. So bonus for me!

I get to give myself my Lupron shot tonight since Dan is at band rehearsal. I am already pumping myself up to do it. We go tomorrow to learn how to do the multiple drugs Dan has to start giving me on Friday. I guess we will have bigger needles and more syringes. Fun!

Only 12 more days left of grad school!

Monday, June 25, 2012

Right now

Right now I have to say I am feeling a little overwhelmed.

Right now my thoughts bounce around in my brain from one thought to another.

My brain right now:
                                                     Again I show off my mad MS Paint skilz
                                                        (side profiles are hard to draw!)

Grad school is hard guys! It's what I thought college was going to be like, but then college was a lot like high school without adult supervision. I probably would do better at grad school if I had done it first instead of undergrad.

So that is what is on my brain right now. It's nice to vent to the interwebz, even if it can't talk back.

Back to homework!

Thursday, June 21, 2012

Well I still have cancer.

We met with our oncologist today to go over the test results that have been collected over the past 2 weeks (has it only been 2 weeks?!) and what our future game plan is going to look like.

He stated when we walked in that he had some good news and some bad news. The good news was that I had Hodgkin's Lymphoma and the bad news was that I had Hodgkin's Lymphoma. So this is good, because Lymphoma is very treatable but bad because it's still cancer.

Well I really didn't doubt I had cancer though I know Dan still had a little hope that they had gotten it all wrong. So we were just relieved to know it was definitely Hodgkin's Lymphoma and that I was considered Stage II-A which means I have cancer in multiple lymph nodes, but nothing below the diaphragm or in my organs and no external symptoms like night sweats or weight loss.

So that was all a review from last time. We got to see more PET scan pictures which looked horribly scary at first, and then he explained that the radioactive sugar stuff they injected me with got pumped through my heart as well as in my bladder, so just ignore those big black holes of scariness. The cancer is covering my upper body however. I meant to ask for a picture of the PET scan but I forgot, so here is an (my) artist's rendition:
Do not mock the awesomeness that is MS Paint

So that is what my PET scan looked like. We are a little worried about the sizable lymph nodes around my heart, so those will probably take radiation as well as chemotherapy to get rid of. The one in my chest has also grown 2 cm since my diagnosis in May so we will keep an eye on that one.

I will need 4 cycles of chemo which is 8 weeks long. I go in every 14 days for a round of chemo and then recover. When we are halfway through chemo we will do another PET scan to make sure the cancer is shrinking. If it is we will do the 2 more rounds of chemo and then do the RTI therapy (radiation).

I am still recovering well from my surgery, there is barely any redness or bruising anymore except for my arms where they were poking around looking for a vein. I am getting some feeling back in my neck too which is nice. It's weird to not be able to feel half your neck!

My sister and my mom sent me some nice new scarves to cover up my scar until it heals better (thank you!) and I have gotten some great texts and emails from people with some great encouragement for me. I really appreciate it! 

Next up on the docket is more IVF tests and shots and a bone marrow biopsy on July 12th. Our oncologist was very honest with me today and said that the biopsy would hurt and I would cry.  I am grateful for the honesty. I am starting to realize that in the world of medicine it never "just stings", it hurts!

On a happy note, I am getting A's in all my grad school classes. For the first time in my life I could get straight A's this semester!!

Tuesday, June 19, 2012

Surgery Day

Today is the first day I have ever had surgery.  That is, if you don't count my wisdom teeth being removed.  I don't. Mostly because that happened three days before Thanksgiving my freshman year of college and I just don't like to think about it. Let's have a moment of silence for all that food I didn't get to eat. 


Ok, so today I got to go to the hospital bright and early at 7:30. The surgery was scheduled for 9:30. I was actually feeling pretty calm this morning, so I need to thank you all for thinking of me and sending good vibrations my way. So thank you!

They brought me back to the pre-op room, asked me tons of questions and got the IV in. It only took 4 tries. Sigh. My veins really suck. They started using a numbing agent so they could dig around more to try and find veins after they went in. They also used very big needles. So unfortunately I look like a crack addict.  For reference, it was bigger than this:

After they got the IV in and the anesthesiologist (thank you google for helping me spell this correctly) came in to check me out, they gave me the "good stuff". The "good stuff" didn't really do much though and since I was missing grad school to be at the surgery today I decided to pull out some homework while I waited.
Nothing is going to hold me back from reading dense articles and answering equally dense questions about them!

It was a nice distraction for Dan and I to talk about my homework while I was waiting to be called back into surgery. I made sure he checked it  just in case the "happy juice" was doing more than I thought!

Dr. Brockenbrough (we love saying his name really fast) came in and discussed the surgery with us. It wasn't going to be very long and he would talk to Dan after it was over. We expressed concern that my lymph node on my neck had gotten considerable bigger last week and was now easy to see. He stated he would still only take out one since that was all he needed and not to worry about the size.

After that, I was ready to go!

They wheeled me into surgery after I kissed Dan goodbye and I realized that maybe the "happy juice" was working some. If I hadn't been on the juice I probably would have run screaming in to the night! The surgery room looked just like they did in TV shows with big lights, a tiny bed and machines everywhere! It was scary looking. Luckily the juice was keeping me calm and I started focusing on a tough question I had to answer for my grad school homework and tried figuring it out as they hooked me up to all these machines and gave me oxygen.

Then a nice man said he would put me to sleep now, and he did just that! I woke up an hour later in the recovery room with a nice nurse asking if I wanted ice chips. I remembered I had a dream I really wanted to remember but after she asked me about ice chips I immediately forgot what it was about. Oh well.

I moved out of recovery back to my room and they got Dan. I was pretty alert and not nauseous so we were out of there within the hour which was nice.
They gave me Vicodin which was very nice too, but after taking one on the way home I was not impressed. It just made me too sleepy and loopy so I'll stick with Ibuprofen for now.

All the nurses and even Dan told me how good the cut look on my neck. They used glue to close the incision since it will heal easier and cleaner than stitches. Since everyone told me it looked so good, I believed them....until I looked in the mirror....

I guess it looks ok, but man what does BAD look like then??? I will be wearing some scarves this week and fancy wardrobe choices to avoid any weird looks. Besides the lovely scar memento for the day I also got one of these:

I love to get new bracelets

All in all a lot better than we thought it would be. Easy peasy really. Not that I am looking forward to another surgery, but it wasn't that bad.

By Thursday we are hoping for the results when we see the oncologist. For now it is back to grad school!

Sunday, June 17, 2012

More needles! Oh fun!

Yesterday we went to see the fertility Dr.'s nurse (cousin's brother's sister) to get a run down on the injectables I will need to start taking. I brought Dan with me since I knew I wouldn't want to give myself shots to begin with, but maybe I could handle it down the road.

The first shot I am starting with is a drug called Lupron. We were able to get the drug with syringes and the little medicine vial all sent to our house. It even came with a little needle trash can (complete with rockin' biohazard sticker-only relevant if you were in to early 90's punk rock)! I can't believe they can just send this stuff to you.  This is very medical-like-stuff and to us, who have no medical training whatsoever, its just sharp stuff and drugs! All the stuff you aren't supposed to mess with and here it is in a box by my front door.

So the nurse is very nice and patient with us giving us the run down of the shots I will be taking. By the beginning of July, I will need 3 shots a day of fertility drugs so we can go through the IVF surgery the next week. That's A LOT of needles. I know though that women go through this all the time. IVF procedures seem to have become more and more popular over the past decade. We even have friends who have gone through the process. 

So on Saturday night Dan gets the first needle ready.  I told him to get it ready before he came over to me so I wouldn't have to sit and look at it for long. He brought everything over to me, however, and filled up the needle right in front of me. Le sigh. I showed him where I thought he should inject me and turned away waiting for him to say "go" or "1,2,3" or "you are going to feel a little prick". 

HE. SAID. NOTHING. I was completely unprepared!!!

I proceeded to yelp out of surprise and Dan just sits there with a "What?!" look on his face.


So tonight we decided on the 1,2,3 approach and it went a lot better. Silly boy.

Tomorrow is my first day of grad school and Tuesday is my surgery. Thursday we meet with the oncologist again so busy week ahead!

Thursday, June 14, 2012

You down with ENT? Yeah you know me!

Today we went to see the ENT surgeon. For those of you not "in the know" ENT stands for Ear, Nose and Throat. They sent me there since they do surgeries all the time on necks and faces.  Dr. Brockenbrough was very nice and we were even able to see my PET scan for the first time.

The PET scan shows where the cancer is by lighting up the cancer cells with a radioactive sugar. It showed us a lot of what we already knew, that I have cancer in the lymph nodes on both sides of my neck, one under my arm and a big one in my chest.

Luckily the one on my neck that he wants to take out is in an easy location for surgery. It will be an outpatient surgery and should not take very long. I will be put under general anesthesia and they will make a small incision and take it out. They will then do a biopsy on it to see what kind of cancer I have. They are pretty sure it is Hodgkins but wanted to do a full biopsy to make sure.

I will just be happy to get this thing out of my neck. It has been swollen since May and if you look at me closely you can see where it is at the base of my neck. It is full of cancer and I just want it out of my body!! 

I go in on Tuesday morning, so calming thoughts my way during that time. I am pretty nervous about all those needles and being knocked out. Hopefully we will be back to work on Wednesday and I will hopefully only miss one day of grad school. Oh yeah, did I mention I start grad school  next week too?!

Just a fun crazy summer to be had!

I fix the comments now so it should be easier to post one.

If you want to know when I put up a new post you can subscribe to the blog in the upper right hand corner. 

Monday, June 11, 2012

Finally! Some good news!

Today the doctor called about the PET scan. The actual doctor, not a nurse. 

I immediately thought the worst.  My heart stopped when I picked up the phone.

Dr. Zhang quickly quelled my fears though. He stated that the swollen lymph nodes in my  neck, under my arm and in my chest were cancerous. However, there aren't any concerns of the cancer being on my organs or in any lymph nodes below my diaphragm.

Image found here: http://lymphomation.org/stage.htm

This means in medical terms that I am in Stage 2 of Lymphoma. This is good news!

Stage 1 and 2 from what we have been told and have read are VERY treatable and don't necessarily take an aggressive form of chemo to beat. What we were worried about was that the cancer had gotten into my liver or my spleen which would cause more chemo and surgery to be done.

So all in all, this is the best news we have received since finding out I had cancer. 

The doctor also said he had received a memo from my infertility doctor about the steps we were taking to get embryos frozen before chemo. He was perfectly fine with the game plan as well as waiting to start chemo till we were done with it since I was at Stage 2. Also great news!

We now meet with the ENT surgeon on Thursday to discuss when we can have surgery for the removal of the lymph node in my neck. Hopefully we can fit it in between work and grad school which starts next week, so I don't have to miss anything!

All in all it was a good day.

Thursday, June 7, 2012

PET scans can suck it!

So I went in for my first PET scan today. For those keeping track at home this test will show where the cancer is and how far it has progressed. So needless to say I was already nervous since this is a big test. Have I mentioned I also don't care for small spaces??

So they injected me with radioactive sugar (sounds bad, but it just lights up where the cancer is) and I waited for an hour while drinking this lovely day-glow stuff.

It wasn't too bad. It tasted like a bitter lemonade crystal light. So there I was waiting for the radioactive sugars to light up my cancer while the lovely neon drink did something or other. I was feeling pretty good.

Then I saw the machine.

So I am not a fan of small spaces, but what makes it worse for me is I can't move while I am in this small space. I can't fidget, I can't tap my foot, I can't whistle, NOTHING.

So there I was looking down the barrel of this huge machine. Ok, I can do this. I can do this. I can do this!

Nope. Didn't do it.

I lasted about 3/4 of the way and then I couldn't take it anymore. I was sweating, I was shaking, I felt like I was going to throw up from the lovely meds they gave me. I yelled out a desperate "Hello? Anyone there?" and the radiologist came out to save me.

I took a break, walked around, got a drink of water and hopped back in and finished it. 
THANK GOD! Next time I have to do this I am bringing my iPod and some headphones and getting lost in some This American Life. Did I mention I am going to have to do this ALOT?! They scan me halfway through chemo, at the end of chemo and then every 3 months after that to make sure the cancer hasn't come back. ::sigh::

So we have learned I have become a huge wuss in my old age, and next time I will hopefully remember my iPod and my dignity and make it through!

*this post was edited by Dan.  
editor's note:  Julia isn't a wuss.  She isn't old.  Ira Glass rules!

Wednesday, June 6, 2012

Fertility + Cancer = Headache

Today we met with the infertility specialist.

WARNING! WARNING! This post contains words such as eggs and ovaries. If this is not the post for you no hard feelings, just skip it, the next one will be normal cancer stuff again! 

Thank you and goodbye forever. Or till tomorrow.

I just need to let you know, when we first started talking about getting pregnant. Way back when we first got married, I told Dan and a few close friends that I would NEVER do IVF. I wasn't interested in all of that intervention just to get pregnant. I didn't want all those needles and procedures when there are a ton of kids looking for a good home. I told Dan we would adopt if I couldn't get pregnant without IVF and that would be that.

Amazing what happens to your opinion when all your options are taken away.

I was already diagnosed with PCOS the same day I found out about the Lymphoma. PCOS is very treatable and usually women have no trouble getting pregnant if they have it. 

When we talked to our oncologist about pregnancy after chemotherapy he recommended getting some embryos frozen so that if the chemo caused early menopause I could still get pregnant later.  We talked to our fertility specialist today about what that process would look like. 

Dan made this for me to explain what I can expect now for my summer.

It looks crazy. Absolutely crazy.

Instead of doing everything gradually they are putting me on the fast track. I will start hormones next week. Two shots a day for 15 days. I go in for ultrasounds and blood tests every 3 days to check that everything is going well. The week of July 9th I head over to Indy where they will do the procedure. They will put me under using Propofol (Yay, Michael Jackson!) and do a simple procedure to extract the eggs. Then they will fertilize and put them on ice till we need them again. 

Luckily insurance covers this, so even though I am going to be shooting myself up and going to Indianapolis for a procedure with lots of needles and more drugs, I don't have to pay for it! 

And at the end, when I am all done. When the cancer is gone and the chemotherapy is over we can have our own little Hartman.

There is nothing I want more.

Tomorrow is the PET scan. I am a little nervous since I know so much is riding on it, but I will focus on not freaking out in the little tube.

Wish me luck.

Monday, June 4, 2012

Introducing your Oncologist

Who would have guessed at age 29 that I would have an Oncologist?

I wouldn't have until a week ago. 

Dr. Zhang is great though. Tons of positive energy and a quirky sense of humor. 
We liked him immensely.  He was very positive about Lymphoma (high success rate of remission), though we are no longer calling it Hodgkin's until he has done a biopsy on the lymph node in my neck.

It will be removed within the next 2 weeks and he will use it as a basis on what exactly the cancer is.  On Thursday of this week I go in for a CT/PET scan which will show if the cancer has moved to any other lymph nodes or organs.

As of right now since we don't have a "Phase" for my cancer (1-4) we are not sure of what type of chemotherapy I will need. 

I will need some form of chemotherapy though. 

That sucks.

I think both Dan and I were hoping the Dr. would think that there could be a possibility that I wouldn't need chemo at all, but as Dr. Zhang said "I am from China and I believe in alternative medicine, but not for cancer. When you have cancer you don't mess around."

So we are not messing around and we are going with chemo.

Since that can cause fertility issues and we already have fertility issues, we are back to talking to our fertility specialist about our options for embryo/egg freezing so that after I am done with chemo I can still get pregnant.

So for those keeping track: Next step is PET/CT scan this Thursday, then surgery consult with ENT specialist to remove lymph node next week and then removal of lymph node sometime next week (TBD). Meeting with Dr. Zhang on June 21st to go over results for all the tests.

We'll know more soon, but as of right now we won't have to start chemotherapy until July at least.

Sunday, June 3, 2012

I wanted a baby and all I got was cancer!

So I was sick for awhile. Ok, a long ass time. Pretty much the whole month of April. 
I had a fever.
Crazy fevers. Fevers of 103, if I stopped taking Tylenol. I took a lot of cold baths. Woke up every night shivering uncontrollably. Dan would hold me and try and warm me up since I felt like I was so cold I was going to freeze in our bed. Couldn't eat. Had an absolute hatred of any kind of food. Which if you know me is not normal.

I lost 15 pounds (yay!) but missed a bunch of work (boo!). I went to convenient care a lot where the Dr. just told me I had a bad case of the flu and I wasn't taking enough Tylenol.
 I finally went to my general practitioner and she ran a whole blood check up. Things looked weird at first but it was all put up to malnutrition due to me not eating for 3 weeks. Though I did find out I had Mono at some point in my life, but didn't have it now. I had a Vitamin D deficiency (that's what happens when you work 2 jobs, never see the sun) and they thought I had Lupus for about 5 seconds.

Finally May came and I began to feel more like myself.

I noticed though the lymph nodes in my neck were swollen. That was new. I finally called my general practitioner to see if I could get some tests done again.
We did more bloodwork and then had a chest X-ray done. The bloodwork came back fine but the chest X-ray showed more swollen lymph nodes. The Dr. called for a CT scan this time. 

At the same time this was going on I had a pelvic ultrasound and blood tests done due to some fertility issues I've been having. I received a phone call from my fertility Dr. that I had PCOS the same day I got a call from my GP saying I needed to come in that day to talk about my CT scan. Needless to say I was worried about both, but everyone was saying that everything was fine.

When we went to talk to my GP she said it could be lymphoma but was probably an infection leftover from when I was sick. Something viral that hadn't gone away.

I had a needle biopsy on my lymph node in my neck.

The next day the Dr.'s office called and and told me I had Hodgkin's Lymphoma. They actually told me on the phone! The nurse did apologize for doing so, but said the Dr. had to leave town and wouldn't be in the next day to meet with me. She said to make an appointment with an oncologist.

Tomorrow we go to the oncologist.