Chemo 3 updates, immune system, progress, and nerves

It has been a bit since I last updated, so I thought I would update now before my next chemo session tomorrow. Chemo 3 went about as well as one could expect. I met with my oncologist, who examined me and said that Bob has shrunken to a point that he can't actually tell if what he is feeling is still a mass or is just scar tissue!

Left side is Bob and his friends, right side is a recent picture

My blood work showed that my iron deficiency has gotten worse, and that my white blood cell count has dropped so significantly that I have to receive Neulasta shots for the rest of my treatment. Basically, as I mentioned before, the chemo destroys the good with the bad, including my white blood cells. The white blood cells primary job is to help defend the body against infectious diseases, etc. so, with a greatly decreased number, I have a very high chance of getting sick, and not being able to fight the sickness off at this point. Neulasta is a shot that I receive the day after chemo that forces my body to produce a ton more white blood cells. Side effects are bone pain, especially in the chest, where the largest number of white blood cells are made. I experienced this last week, and at times it felt like when I moved the wrong way I had resonating pain at my very core. Weird, a bit unpleasant, but I have definitely had worse.

Tomorrow is chemo 4, and when I am done I can say that I am half way through my treatment. I'm excited to reach that milestone, even though my stomach is a little sick with trepidation.  It is never as bad as I build it up to be in my head, in fact the treatment itself is fairly easy. It's the way I feel after that makes me so nervous, the tiredness and the weakness. I know that it is tough for anyone going through this, but for someone like me, who is usually able to push my body to do what I want it to do, it is pretty frustrating. I guess the prime example is what happened this past Friday. I have been struggling with watching the number rise higher and higher on the scale. I know I have bigger fish to fry right now, but frankly, I have worked incredibly hard on myself physically, and it irks me to see that hard work float away. So, for the first time in 3 months, I decided I was going for a run. I had absolutely no stamina, and was having an awful time of it, but pushed through anyway so I could complete 2 miles. About an hour later, I went in to have my port flushed and my blood drawn. My favorite nurse came and got me, and began diagnostics, when she noted that my pulse was quite a bit higher than normal.

Nurse: Allie, your heart rate is pretty elevated compared to your usual

Me: uhhh.... *mumbles*

Nurse: did you just say you went for a run about an hour ago?

Me: uh, yeah.

Nurse: when is the last time you ran?

Me: about three months ago?

Nurse: *long pause then big sigh* only you, Allie, would start running again while you're midway through chemotherapy. I'm not going to tell you not to run, but at least slow down please. The adriamycin has bad effects on you. *walks away shaking her head*

P.S. This is my post run face:

I wasn't thrilled

I've started putting things together for post treatment to look forward to, all of which I am super excited about. 1 thing in particular, you all may find a little crazy. For a number of years, my amazing friend Rachelanne has been doing Spartan races, which are these incredible races that vary in length, and include tons of awesome obstacles. I have always wanted to do one, so as a celebration of being back in control over my body, we are doing the Malibu Spartan sprint. Buuuut, because that obviously isn't intense enough, we are doing the hurricane heat. What that means is, we will be there at 6 am Saturday, doing the course in teams, in a way different from everyone else. We won't know how until we get there, but it could be something like backwards, or carrying another team member on our back! If you're interested in checking it out, or possibly doing it with us, this is the link: http://www.spartan.com/events/?event_id=146/malibu-sprint

I will try to update again sooner than last time... I just get swept up in finally feeling better on my good week, and I try and squeeze the most out of my days. Thank you all for your support as usual. Lots of love,

Allie

Chemo 2, and an open letter to my cancer.

It is absolutely insane how fast time will fly by, regardless of anything you do to try and stop it. This week started with chemo 2, and that was a hell of an experience on its own. I was very very lucky to have Marsha (my amazing mother in law) come with me to my chemo appointment. We spent time that could have been a really crappy experience together, and had fun instead.

After chemo 1, I described the nausea that had me curled up in a ball on my bed. I talked to my nurses on Monday when I went in for my next appointment and got a bit of a talking to for not calling them when I was going through this. Because I had such a strong reaction on the first night --the night that should have been the best for me with the amount of anti-nausea they had pumped into me earlier in the day-- they decided to double my steroids and beef up my at home medications as well. Things seemed to be business as usual, they sprayed my port with the freezing spray and hooked me up as usual, then pulled back to check the amount of blood return they were getting, which is where the problems started. Apparently my port was not going to cooperate. On Friday, when I had gone in for my port flush and blood draw there had not been an issue, but now when they pulled back on the syringe they were not getting a decent flow of blood. As I've mentioned before, chemo drugs are incredibly toxic, and in fact if they are not properly administered can destroy all tissue that they come into contact with. My nurse, Josie, tried flushing my port with saline (blech), and still minimal return. Josie said that likely my catheter was pushed up against a blood vessel, so she had me turn my head all the way to the left and tilted my chair back so that my head was actually lower than the rest of my body, which made the blood flow properly. Go figure!

So, after the initial premeds, (anti nausea and double steroids) I was tilted back and had one nurse holding my chair so my head was lower than my body, while Josie pushed in the first 3 chemo drugs. All in all, I spent close to 45 minutes that way. Talk about a head rush. My blood return went back to normal by the end of it, and I was allowed to sit normally for the dacarbazine drip.

I took an Ativan when I got home (per nurses orders) to counter the steroids, and to prevent nausea. I honestly don't remember much more of the evening, other than that I slept a loooong time! The next few days I spent in a similar fashion, exhausted beyond what I have ever really experienced before, but thankfully nausea free. The new symptom that I'm dealing with now is that I constantly feel like I've been beaten with an aluminum bat. Every part of my upper body is extremely tender to the touch, and I can't seem to get comfortable. Add to it that we had a crazy weather change (pouring rain out of nowhere, yesterday!) and I'm sick too. Fun times.........

Here's hoping the next few days are better, so that I'm not starting at a crazy low point for chemo 3.

I'm gonna switch to a different line of thinking now, mainly because I don't have much more to say about this round of chemo that isn't complaining, and I just don't feel like doing that. If you have any questions, as always, ask away!

Warning! The following is an open letter to Bob and all of his friends. I don't intend to make peace with him, and I'm probably going to curse. I will try to keep the whining to a minimum. You've been warned.

Dear Bob,

First of all, from the bottom of my heart, screw you. Here I am, minding my own business, and you decide to come barreling into my life? I have had enough. I suppose the warning signs were there that something like you was coming.... Life seemed to be falling into place. Wonderful husband, beautiful child, on the path for a career I can be proud of.... The list of blessings is endless. And then there you came, more apparent with each pound I sweat away, daring me to be happy.

I'm tired, and I'm sick, and I hate you. Today, when I lacked the strength to drag myself out of bed, I cursed you so so many times. I can't wait until you're gone from my life for good.

If there is one thing that I am thankful for, as far as you are concerned, it is that you are my burden. I couldn't bear to see my husband, my family, G-d forbid my daughter dealing with you. It is a thought that makes me feel physically ill. But right now, I don't want to be thankful. I want to be angry. GET OUT!

When you're gone, I'm going to have a party, that everyone but you is invited to. Maybe I will even make a cake and say rude things about you on it.

I know I will beat you. If my past has shown me anything, it is that I have a strength that shines strongest when I have obstacles to overcome. I will never forget the tears I shed when I crossed the finish line of my first marathon, soaking wet, after 8 hours in rain and a body "too big" for marathons. I won't cry when you're gone. I might run another marathon though.

I'd keep going, but for tonight I refuse to dedicate even one more minute to you.

Hair today, gone tomorrow.

Well.. It's almost chemo #2 time. Monday, assuming I am well enough, I will be having my second treatment. I'm fighting off some sort of sickness right now, likely a cold. I'm sniffly, my throat is sore and scratchy, and I have green phlegm. Joy! If I am still sick-ish, or any worse tomorrow I have to call my cancer center. Chemotherapy is incredibly harsh on my immune system, it's a poison that goes through my body destroying everything in its path, good (like my red and white blood cells) and bad (Bob and his friends). It is running my body down and making it more susceptible to all sorts of fun sickness, which is seriously dangerous to me -- with a weakened immune system, any sickness can turn into something worse very quickly. But.... It's also saving my life, so I will roll with the punches on this one.

I wanted to talk about two things in this post, which are intertwined. First, the title of this post.

When my oncologist sat me down during my first visit with him he said a lot of things, but one (which wasn't unexpected, but I still didn't want to hear) was "you're going to lose your hair". He didn't say may. He didn't say some. He just said it, like it was a simple fact. Now, I never particularly thought that I was super attached to my hair... It was just a thing that kept my head warm, and I occasionally tried to do something with. But, suddenly, the idea of not having it made me feel physically ill. Of all of the things to worry about, I chose my hair. I read article after article, and personal accounts of people with Hodgkin's, and ultimately, each one of them lost some or all of their hair depending on how many treatments they had. That night, I was laying in bed worrying about what I would look like bald, when it hit me like a ton of bricks. Who cares??? It's hair. It will grow back, right? I'd rather lose my hair than lose my life. So, with that resolve firmly in my mind, I decided that at the first signs of hair loss, I was going to shave my head. I wouldn't wake up to clumps of hair on my pillow each morning, or face handfuls of it while showering.

I had the incredible and amazing fortune of having my best friend, Danielle, fly in from Canada on the 10th. She came to support me, and help me through the beginning of one of the toughest fights of my life. The week flew by with us constantly laughing, talking, and eating our way through some of the best food I've had in years. (Don't judge!). The whole week I battled the nausea, tiredness and dizziness that comes with the chemo, and my scalp started developing sore tender spots. I knew hair loss was on its way. Now, though, I wasn't scared. I had my strongest parts of my support system nearby.... My husband (who is my rock and my strength), my mother in law (who I may as well call mom, because that's how it feels to me), and my best friend.  I also had the rest of my support system (namely each and every one of you that takes the time to follow my journey and offer your love, support, and even a kind word). You all mean so so much to me, so thank you -- before I forget to say it! On the last day before I took Danielle home, we sat down with a set of clippers. Danielle had me shave her head in solidarity, and I've gotta say, she is a brave woman. I wouldn't have let me do it! I made it through (slowly) without cutting her, though. Then, she did mine. We did a video of the beginning of the hair coming off. I expected to feel sad, or nervous, or maybe even some regret. What I didn't expect was that I didn't feel any of those things... Instead I felt incredibly empowered! And, I had a hell of a lot of fun too. Here's the before and after:

The thing is, being bald as a woman is kind of a big deal, right? People definitely look at you - a lot. In the few days since I've done this, I've gotten tons of comments, including "what, did you lose a bet?"

This leads me to my second talking point. Beauty and self-image while going through this process. 

I'm not going to lie. In the month while waiting for diagnosis, I stress-ate like food was my air. I stopped working out, partly because I wasn't allowed to with the procedures I was going through, but mostly because I felt like sitting on my butt and eating and cuddling with my daughter. I gained somewhere around 20 lbs. For someone like me who has struggled with my weight my entire life, and was at the lowest weight I had ever been, this felt kind of like the end of the world. I've really tried to maintain a positive outlook, and I really am lucky, but with everything crashing down in our world at the same time it sort of felt inevitable that this would fall apart too. 

Yesterday, I looked in the mirror and I sat there feeling incredibly unhappy. It had nothing to do with the bald head or the extra 20 lbs. it had EVERYTHING to do with the things that I started saying to myself. I caught myself picking myself apart and negatively self talking. And, the truth is, I don't deserve that. So, I'm putting this out there, because the truth is -- extra weight and all -- I am beautiful. I'm strong, and 6 months from now, when (G-d willing) this is all over, I will look back at this process and I will not shake my head at the fact that I ate a piece (or 4) of cake, but I will be thankful that I made it through,  and am stronger than ever. 

On that note, I think I will wrap it up for tonight. If you have any questions, feel free to give me a shout. 

As always, sending my love. 

<3

Staging, chemo 1, and aftermath

Well, it has been a heck of a week. Monday, I met with a nurse for new patient chemo orientation. She gave me a stack of material to read, a ton of information about what to expect, and accessed my port for the first time to do a blood draw. Basically, she used a freezing spray to completely numb the area, and then stuck a needle through and into the port itself.

This is essentially what happens when they access the port.

My port being accessed for the first time.

It wasn't a big deal at all.... and I definitely prefer them being able to access my port this way rather than having to constantly stick me to draw blood and administer the chemo.

On Tuesday I went in and met with my oncologist. We went through all of the test results that we have gotten to point. The lung and heart function test came back normal, and cleared me to have chemotherapy. My PET scan came back showing 4 masses all along the same lymph node chain, but fortunately no spread anywhere on the other side of the diaphragm, so I am classified as Stage 2a. Our current course of treatment will be 8 sessions of chemotherapy, which breaks down to 1 session every other week for 4 months, and then radiation afterwards. Dr. Spillane answered a few more questions, and then I was taken for my first round of chemotherapy. 

The chemotherapy area is not very big, but it is comfortable. There were lots of squishy reclining chairs, and I settled into one while my nurse went to go grab my own personal chemo cocktail. 

 Our squishy chairs.

Maybe it is weird to say this, but the chemo areas themselves are nice, for what they are. All of the nurses are friendly, the other patients will smile or occasionally say something to you, but ultimately it is fairly depressing, when you really take the time to think about why everyone is there. I tried not to focus on that too hard, and they set me up to get ready to administer my treatment. Before they actually pump the drugs in, they access the port, the same way that they had on Monday, (sanitize, freeze, access) and then they dripped a steroid and a couple of anti nausea medications into me. When we were all ready to go, they brought out my chemo drugs. Each type of cancer is treated with different type of chemotherapy drugs/radiation or both in conjunction. For Hodgkin's, the standard treatment is called A/B/V/D. It is four different drugs - Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. http://en.wikipedia.org/wiki/ABVD 

My drug bags.

Three of the drugs are what are called "push drugs", which means that they're administered by a nurse who pushes them slowly in through my port with a large syringe. 

Getting my Adriamycin. It's a dark orange color drug, that turns my pee bright red. Fun, right?

Then they dripped the Dacarbazine in, which is a slow drip that took another hour and 45 minutes. The whole process only took about 3 hours, and wasn't horrible. They flushed my port with heparin (ew.. horrible taste) and then I was free to go.

I picked up some prescriptions from the pharmacy, mostly anti-nausea medications, and headed back home. The anti nausea meds that they had pumped into me before my chemotherapy began to wear off after about 6 hours, so I took one of my meds and tried to rest. At one point, I had about 2 hours left until I was allowed to take my next anti-nausea pill and things were so bad that I curled up in a ball in bed and just sobbed. Not my best moment....

Things were a little bit better the next day, after I had gotten some rest. I found that if I let my stomach get too empty, I tend to get very sick to my stomach and not be able to eat. I was still bone tired on Wednesday (my birthday), and I was scheduled for 3 appointments on top of it. I had a consultation with the radiologist, who will meet with me again after I have my 4th chemotherapy session, to talk about my progress and discuss how much radiation treatment I will go through after I complete my chemo. I then met with my nurse navigator, and a cancer nutritionist to talk about what to expect for the next 6 months or so. 

I feel like I am leaving a lot of things out, but this week has been a bit of a blur. As far as side effects from the chemo -- I am trying not to push myself too hard, because I will suddenly feel extremely exhausted out of nowhere at times. I had pretty weird radiating mouth pain for a couple of days, and my scalp is tingling and sore in spots, and my hair is now (slowly) starting to fall out. According to everything that I have read, I will really start to see my hair come out in clumps about 13-15 days post chemo. When I have that happen, I'm probably going to just shave it off, rather than facing a hair all over my pillow each morning. 

I think that is it for now, I will post more about this past week tomorrow, when today slows down. Love to you all!

PET scan, pulmonary function test and echocardiogram

Well. It seems like these past two days have been jam packed. Yesterday was my PET scan and my pulmonary function test, today my echocardiogram and -as a nice break- my amazing mother in law's birthday.

The PET scan was fairly boring. I had to have an IV again, even though my port is in place. They injected me with a radioactive isotope and then I had to sit completely still for an hour. Fortunately, they reclined me in a comfy chair, and I dozed off listening to music. After an hour, I was moved into another room and had to lay still on a machine for another half an hour while they ran me through a tube and took detailed scans. It was painless, though my hands were in a very awkward angle and ended up falling asleep. Not my favorite feeling! I wasn't allowed to take any pictures unfortunately, but the machine looked a lot like the one pictured in this link. Ben asked me if I was going to develop super powers, now that I have been injected with a radioactive substance. I told him to lay off the Spider-Man comics. 

I won't have results for my PETscan until I see my doctor Tuesday, but this one was a big one... From here we will find out what stage Hodgkin's I have.


After a quick lunch I went to my lung function test. I was put into a booth where I did a series of breathing tests. Essentially I had to breathe in and out on cue and against resistance. Easy enough.

This morning I had an echocardiogram to check out my heart function. It was an ultrasound with cables hooked up to my chest to monitor my heart. It took about 15 minutes total, but the tech was awesome and he said (off the record) that everything looked favorable.

I finished up the night in a fun way, with dinner with my inlaws to celebrate Marsha's (Ben's mom) birthday. It was a very welcome distraction... Good food, great company, and I made a purple cake from scratch. It seemed to be a hit. I'm seriously so incredibly fortunate to have Marsha in my life. Ben's whole family is amazing, but Marsha is the glue that holds everything together. I could spend a long time listing all of the things that she means to me, but I will just say that I can't think of a better way to spend my first chemo session next week, than hanging out playing scrabble with her.

Speaking of which, it looks like next week's schedule is finally set. Monday I have my new patient chemo teaching session, Tuesday is my first chemo session. Wednesday I will meet with my nurse navigator (who handles resources I may need for my journey and coordinating my care. ) and my cancer dietician. And then class, assuming I am up to it! (It also happens to be my 28th birthday... Happy birthday to me?) Thursday is my 7th oral exam for anatomy, and Friday will begin girls weekend with my Canadian bestie who is flying out from Thunder Bay, Ontario to hang out with me, and my amazing close mama friend, Sarah :) Fewf!

I will leave you all for now with a few pictures, and will post again soon!

No bandage - not too bad 

This is seriously how it feels every time I go to a doctors office lately. Danielle says it's too soon for cancer jokes, but it find this hilarious because it is so true. 

Annnnnd purple cake. It looks sad because I didn't take a picture until after we started demolishing it, but it was goood!

Port surgery and appointments

This morning I had my port implanted. A port is basically a medical device that is implanted in the body that provides direct access to a vein without having to constantly put in IVs. In my case, my port was placed in my upper right chest area, and will be used for blood draws and to administer chemotherapy without burning up the veins in my arms. When they want to access it, they will just stick a needle into the triangular portion of my port, through the skin. (Check out what that looks like, below)

It wasn't an awful procedure, the anticipation was the worst part. I was awake for the whole thing, but numbed and sedated. It felt like a ton of tugging and pressure after the initial pain from the numbing shot (which also wasn't terrible, but it was prolonged). Now I am bandaged and have to keep it dry and bandaged until my chemo appointment next week. It's definitely sore, and it hurts to even turn my head at the moment, but my pain will get better over the next few days, according to my doctor.

Tomorrow is a big day, I have my PET scan, which will determine what stage Hodgkin's I have, and my pulmonary function test. I'm very happy to finally be having that done, though a teeny bit bummed, because I had to stop eating at 8pm and couldn't have carbs for dinner, and all I wanted after today's procedure was a big bowl of pasta! Oh well, tomorrow! All in all, things seem to be moving quickly now.

Here are a few pictures from today. Will post again after my PET and pulmonary function test tomorrow.

Hopefully my last IV for a while!

Post surgery bandaged mess. 

Power port, the type of port I had implanted. 

First meeting with my oncologist, tests, and what's coming.

So, I met with my oncologist yesterday for the first time yesterday. I really like the guy... He's warm, reassuring and didn't talk down to me. He ordered a battery of tests (no surprise there) which we are waiting for insurance to approve, and will be scheduled for next week. Our first step will be a PET scan ( http://en.wikipedia.org/wiki/Positron_emission_tomography ) which will be used to figure out what stage of cancer I have. I will also have to have both heart and lung function tests to ensure that I am ok for chemotherapy, as it tends to damage those organs. Tuesday morning I will be having a surgical procedure to place a port in my chest, that can be accessed to draw blood and deliver chemo without having to constantly treat me like a pin cushion or burn up all of the veins in my arms. The following Monday (April 7th) I am scheduled for my new patient chemotherapy orientation, which will be an hour session telling me what to expect. I will be starting chemo that week. Somewhere in between I am being referred to a fertility specialist, as chemo tends to have a negative effect on fertility, and my doctor would like me to discuss options there, just in case. Seems like things are so many things to get together in a short amount of time, but I am glad that the long wait times seem to be over, and we can get down to the business of sending Bob packing.

When I was waiting for my diagnosis, I spent a lot of time on Dr. Google, and read a lot about people's experiences with Hodgkin's. I was scared to death of one of the diagnostic tests that they mentioned -- the bone marrow biopsy. Essentially, this test is performed while you're awake, laying face down on a table, while a doctor numbs you, then goes deeper and numbs you further, then does it again until they can reach the bone, then they take and essentially core out a piece of your bone to get at the marrow, so that they can tell if the cancer has gotten to the bone marrow. Sounds awesome, right? Well, while talking to my oncologist yesterday, I asked about that test, and he said that I will NOT have to have it done! Essentially the treatment wouldn't change if it did reach the bone marrow, as chemo will reach it there as well, so the only reason I'd have to have a bone marrow biopsy would be if I needed a bone marrow transplant. Woo hoo, good news!

I got a mini tour of the facility where I will be spending quite a bit of my time over the next few months having chemo. My doctor also mentioned that there were FOUR other women, all right around the same age as me, that all have Hodgkin's now and are going through treatment. So, I may be making some new friends.

I think that's it for now. I will update next week as the testing goes along. Now, who wants to come keep me company for my chemo?

Meet Bob

This is Bob.

I'd like you all to meet him now, while he's still around. Hi Bob!

Looking forward to getting rid of you!

Symptoms and diagnosis.

First, thank you you for coming to visit my blog. I decided that I would put this together for my family and friends so that I could update everyone in one place about what's going on, what we have done so far, and what's next. Also, maybe someone else that is just starting their journey with Hodgkin's may find my experiences helpful. I'm just starting myself, but I find it cathartic to write it all out. 

Before we delve in, I just wanted to say that I am extremely fortunate. Hodgkin's lymphoma is one of the most curable types of cancer. If I had to have any type at all, I am extraordinarily thankful that it is this one. 

A few months ago, I noticed a lump on the left side of my neck. I figured that it was likely just a swollen lymph node, and didn't think too much of it, but decided to keep an eye on it -- just in case. I mostly forgot about it, but occasionally I would do something or move in a certain way and my hands would brush against the lump, and I would think about it again. As I continued to work out and lose weight, and it became more and more visible. I finally decided that it was time to get it looked at. 

Bright and early on February 20th I made my way to my appointment with my primary care doctor. He went through my chart, and examined me, asking me tons of questions. He decided to send me for blood work and a chest X-ray, and referred me to an ENT doctor. 

The following Friday I met with my ENT. She examined me, felt the mass, scheduled me for a CT scan, and said that there were a few different possibilities for what it could be, including a brachial cleft cyst, an infection or lymphoma. I filled with dread when she said lymphoma. My primary care doctor had mentioned it as well, but only as a small possibility.  

The wait between each appointment began to feel like an eternity... I waited another week for my CT scan, the results came back that my lymph nodes were involved and it wasn't a cyst. I had a needle biopsy done 4 days later, but the results came back as non diagnostic (not enough tissue to determine what it was) and I was scheduled for an open biopsy to remove a tissue sample for diagnosis. Then they were sent out for a second opinion. I was pretty sure when I came in the following Thursday, March 20th, that I wasn't getting good news.

I can't really describe the feeling of having your doctor tell you that you have cancer. It didn't matter that I had been mentally preparing myself for it, researching it every day obsessively and staying up every night consumed with anxiety. I was still floored. In the back of my head, a small part of me was just thankful to finally know what it is, but mostly I just sat and listened to my ENT telling me about Hodgkin's lymphoma, and referring me to my new oncologist. 

I met with my oncologist yesterday, and will post all about that in a little while. In the mean time,  though all of this is a bit overwhelming, I am positive that I have the strength to beat this and come through stronger than ever. Oh, and in reference to the name of this page -- A close friend mentioned earlier that the word cancer is scary and taboo... So in an effort to minimize some of that I have decided that my mass has a name, and it is Bob. How can Bob be scary?