Radioactivity and My “Super” Power Port

It wasn’t long after Rene’s homecoming that we launched into further battle with my cancer stuff. The day after he came home (Monday), we spent about three hours in the hospital, the majority of which was spent waiting for radioactive dye for my MUGA scan to fully circulate in my body (Spiderman and I have something in common.) The MUGA has about the same radiation level as a chest x-ray. The experience is pretty similar to the pet scan I had done last week, except a pet scan exposes you to about three years worth of natural environment radiation.

There was also the usual amount of waiting room time (or HGTV time — as Rene & I have learned) and the scan itself took about 30 minutes. It’s kind of like a somewhat uncomfortable spa experience where you get to lay down and zone out for half an hour. They even had music playing. The med techs were rocking out to some early 90s love/power ballads. I think they forget that the patients and spouses can hear them… but I digress.

They took very detailed “pictures” of my heart while I laid down in 4 or so different positions for about  7 minutes each. The MUGA scan essentially provides my doctors with a baseline of how my heart is operating. The medical technicians inject radioactive dye into my veins using an IV in order to monitor oxygen inflow and outflow (among others things) from my heart. At some point, I will have to go back for another MUGA so they can keep tabs on my heart during and/or after chemo. Unfortunately, this is necessary because one of the many possible side effects of chemo is heart damage.

Similarly, chemo can also be really hard on your veins. Outside of chemo, cancer in general requires many many tests and procedures before and after diagnosis. In the last six weeks, I’ve probably had somewhere in the vicinity of 7 IVs and countless blood tests. So along with the super powers the lime green cookies bestowed upon me last week (courtesy of my Bateman friends), I was also given a PowerPort on Tuesday. The port will be used to administer chemo and also provides a spot where they can take blood and also administer other drugs I might need so they don’t have to create an IV every time I have a procedure.

Compared to my three biopsies, the power port placement actually went pretty smooth. To recap, I woke up in the middle of my bronchoscopy and proceeded to cough while they still had some tubes down my throat and were rinsing out my lungs. I bounced back very quickly from that procedure though,  and bravely had Taco Bell right after with no nausea issues at all, and went back to work the next day. Before the fine needle aspiration, I was a emotional wreck and then became infamous at the hospital because I passed out in the recovery room and proceeded to vomit all over the place. The x-ray tech was in my room taking a chest x-ray at the time and accidentally pressed the code button instead of the nurse call button, causing a very dramatic scene in which 20 people ended up in my room ready to bring me back to life. The bone marrow biopsy was just traumatizing in general since I wasn’t sedated at all and they had to drill into my hip (I don’t think further explanation is needed.)

In contrast, during my port placement I  felt more emotionally prepared and barely felt any pain. Also, I convinced the nurse to give me an IV through the arm instead of the hand since I still had a bruise from the hand IV from the fine needle aspiration. The nurse happens to be from Louisiana, which I think makes her more inclined to like me 🙂 Although I stayed conscious despite an ample amount of happy drugs, I was really relaxed and also had an enjoyable Queen soundtrack playing per my request. They also learned their lesson and gave me a ton of anti-nausea meds before and after the procedure.

Ironically though, the recovery time on the port placement has been a lot longer. It’s taken a good three days to really get the mobility back in my neck and I’m still a bit sore from it. I’m also not supposed to lift anything heavier than three pounds for two weeks, and five pounds for the following two weeks. I find this pretty unreasonable since what  woman’s purse is lighter than five pounds? I’m also bummed I can’t pick up  my cat and dog. However, this has come in as a handy excuse when it comes to household chores though. Poor Rene. He probably expected a peaceful, luxurious homecoming and instead is tasked with pretty much every chore I don’t want to can’t do (which is all of them.)

It also looks like I’m growing a parasitic twin above my right boob.

I like to think that it will be the source of my new super power. I will keep you posted. Maybe all this radioactivity will have unexpected benefits 😉

They also gave me a nifty card to carry around in my wallet and on my key chain, so in case there’s ever an emergency, medical professionals will know that I have a port

One thing about cancer that you never hear people talk about is how much it frickin’ ITCHES! Not only do I have the general itchiness from Hodgkin’s, but the adhesive on these bandages is intense! And they don’t really keep any alternatives in stock, at least not at my hospital. Unfortunately, for both the port and the bone marrow biopsy, I had to keep the bandages on for at least two days. We’re talking some torture level itchiness here. I don’t know how kids make it through this stuff, because it took all my self-control at age 25 to keep from peeling them off early. I will also sadly admit that I’m still the eight-year-old who scratches her mosquito bites raw. Let’s just say I won’t be wearing any bikini’s anytime soon due to the scabs developing around the adhesive spots. Thankfully, I have found that the spray-on Benadryl and CVS-brand knock off works wonders for this issue. I highly recommend them to if anyone is having the same problem.

Team Laura

I am so so happy to have my husband home. He’s currently passed out and readjusting to American time, so I decided to take this opportunity to blog. My sister, Sarah, is a photographer and took some amazing photos of his homecoming, so I will wait to make a special blog post about the event once the photos are ready. If you’re interested, you can check out her Facebook page K Photography to see some of her stuff. In the meantime, my mother-in-law snapped this photo on the way back from the airport on Sunday.

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As my brother-in-law said, Player two has joined the fight!

In the few days that I’ve been blogging I have received so many encouraging messages from so many people! I’ve loved reconnecting with people I haven’t talked to in ages and some I haven’t met at all. It’s so cool to know I have people on Team Laura from around the country and even a few in other countries.

So many people have sent me messages saying that I have a positive attitude, and that I’m brave and strong. Honestly, I’m fighting this battle because I have to and don’t have a choice! The people I really see as strong, brave, selfless, generous, you name it are all of the people that have been supporting me through this! Many of them have absolutely no obligation to. They have been extremely selfless and gone well above and beyond the call of duty.

My mom and sister for example have been living with me for the past six weeks until Rene came home so I’d have someone around in case emergencies popped up, if I needed a driver to appointments, etc. People have been coming out of the wood work offering to give my family a break if they needed, take me out to get my mind off things, bring me to appointments, etc. My friend Meagan and her entire family (including extended) have pretty much the whole New Orleans archdiocese praying for me. My brother-in-law’s coworkers have asked where they could donate to help with my medical bills (I’ve never even met them), my friend College Station Amy made me a Facebook page to connect with other young adults with cancer, the list goes on. I truly believe the people who make up the support system are the true heroes in this whole cancer thing, and they are so often unsung.

My church made me a prayer shawl and my Bible study group prayed over it. My pastor friend, Amy, said she could actually feel the prayers and it is true!

I have some pretty nasty sores on my neck from the port-a-cath placement earlier today and I swear the shawl has made them feel 10 times better.

I went public about my lymphoma diagnosis maybe a few hours before a spouse’s meeting for Rene’s unit, and somehow they had time to make me a giant poster card and buy a beautiful plant for my patio. They also want to get a Team Laura together for the Leukemia & Lymphoma Society’s Light the Night Walk this fall.

A group of my friends from LSU and I participated in a public relations case study competition called Bateman. We’re all still besties to this day, and I was absolutely stoked when I saw this basket in front of my house the week after my diagnosis. They had special ordered lime green cancer awareness cookies just for me.

For each cookie, $1 is donated to the American Cancer Society. Or as Parker says, For every cookie I eat I get a new super hero power.

The same group of friends also made me an internet sensation over the weekend. My friend Parker created a Facebook cover page for Team Laura that quickly caught on with most of our Mass Comm friends and a few others.

It was so bizarre seeing my face pop up on everyone’s news feed the past couple days!

My journalist friend Amy (there’s a lot of Amy’s in my life so I have to qualify them) probably shocked me the most. The day after I told her about my lymphoma she sent me a message that said, “I just did something drastic.” A million things popped into my head. Did she get a tattoo? Quit her job? Shave her head? No. What she did was completely awesome. She signed up for a half-marathon in Philadelphia to raise money for the Leukemia & Lymphoma Society. Seriously. That’s 13.1 miles. Of running. That is such an amazing thing to do for someone and I am so proud to call her my friend. If you’re interested in donating or monitoring Amy’s progress you can check out her fundraising page here. Her page went public yesterday and she has already reached 39% of her goal!

These are just a few of the 5 million amazing ways people have supported me. I can literally write a novel on this topic. I feel so incredibly blessed to have a Team Laura.

Answered Prayers

Thanks so much for the outpouring of love and support over the last couple of days. The blog’s impact so far has far exceeded my dreams. Yesterday was probably the most emotionally and physically draining day I’ve had throughout this experience so far, and being able to distract myself with the words of support that poured out of this blog and Facebook was a God send.

I had to go to the doctor’s office early yesterday morning for a chemo consultation and then (cringe) my bone marrow biopsy. This was the procedure I  dreaded most. Just hearing about it freaks people out, so I will spare you the full play by play. But let’s just say its not very pleasant at all. However, I will say that it probably wasn’t *quite* as bad as I anticipated. But its a mental game for sure. The anticipation drags on and on and on. First, there was already scheduled downtime between the chemo consultation and the biopsy so the drugs could kick in. Then, the doctor was running a few appointments behind due to a wreck on I-35 (big surprise), and once she was in my room it literally took 10 minutes for her and the oncology nurse to unwrap the drill and needles. Seriously. Is there not a more efficient way to do this? I will also say, I do not get why they don’t put people out for this. You’re literally in the regular doctors office, on the regular appointment table. I really put this procedure right up there with my bronchoscopy and fine needle biopsies, and I was on some nice intravenous drugs for those. With the bone marrow biopsy they usually only give someone a local on the hip where the drill goes in and call it a day. However, after observing my panicked state, the doctor and oncology nurse agreed to give me two atavins. They initially only gave me one, which 30 minutes later had zero effect on me. The second one made me pretty darn sleepy, but how much they really helped, I can’t really say.

I’m not ashamed to say that I completely lost it during the procedure. It had been an emotional roller coaster of a week, and having a drill in my hip just put me over the edge. Thankfully the oncology nurse plays a good mom and held my hand, stroked my hair and let me weep. For a little while. After a few moments I was sobbing too hard for the doctor to do her job and let’s just say no one in that room wanted to prolong the procedure unnecessarily. So we did several count to 10s while I got myself under control.

You might be wondering why an entry about a bone marrow biopsy has such a positive title. Right before the appointment I got very good news. First, yesterday morning Rene g-chatted the three words every Army wife cherishes, “I’m coming home.” My heart skipped a beat. I wasn’t able to talk to him much at all yesterday, because he was busy packing and I was busy getting drilled (that’s what she said.. heh heh.) But those three words were enough. He estimated he would be back in 4-5 days, so roughly the upcoming Monday or Tuesday. The second set of good news was from my doctor right before the bone marrow biopsy began. My pet scan results were back and my cancer is only in the one area in my chest we already knew about, which means I’m stage one! Hallelujah! My doctor told me that the stage one prognosis for my form of Hodgkin’s is a 98 percent 8-year survival rate. I cannot express to you the relief I felt. I pretty much had a brief horizontal dance party on the appointment table while I was being prepped, a short lived dance party due to the pending bone marrow extraction, but a dance party nonetheless.

After the biopsy is pretty much a blur. Although there was lots of excitement from everyone about the two great blessings we were given. I, however, mainly stayed in bed and slept. When I wasn’t sleeping I was mostly on the bed reading encouraging messages on Facebook and the blog. I got a few texts and phone calls as well. I couldn’t eat much yesterday, but now I’m feeling much better. I also squeeze in some TV time. Seriously: Did Shonda Rimes have to kill off you-know-who on Grey’s?

One of the gross parts of this procedure is I can’t bathe for two days due to this:

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Attractive, yes?

Luckily I’ll be able to remove it and shower just in time for Rene to come home, because he told me this morning he’ll be home within the next 48 hours! This has far exceeded either of our wildest dreams. I cannot wait to have him back in my arms again.

Since its a weekend, I have a couple days reprieve before my tests start again, so I’m looking forward to making banners, getting the house ready for his return and actually spending time with him!

God is good!

When life hands you limes…

As many of you know and some might suspect, I’ve recently been diagnosed with Hodgkin Lymphoma (I knew you were going to Wikipedia it so I made it easy for you). In short, it is a blood cancer found in certain white blood cells called lymphocytes, specifically the Reed-Sternberg cells. The type I have is called Nodular Sclerosis. I’ll preface this by saying that I feel fine, and it’s a very treatable form of cancer and can even be cured.

Your next question might be… so if you feel so great, how did you find out you had cancer?

Well, it was a process. At the beginning of April I very fortuitously switched primary care managers and chose a physician at a large healthcare system in Central Texas. I had gone to the same health care system when I lived in Killeen near Fort Hood, Texas in 2010-2011 and really missed the level of care I received there. The primary care manager I chose when I moved closer to Austin, Texas just couldn’t provide the same level of care and I was tired of having to get referrals constantly. Every six months I have blood work done to monitor my cholesterol level, which coincidentally was the lowest it’s ever been! When she ran the test, however, she found some mildly concerning things: I was anemic and my white blood cell count was high. It’s not uncommon for young women to be anemic, and I’ve pretty much lived with a sinus infection since moving to Central Texas in November 2010, so neither one of those factors concerned me. However, being the great physician she is, she ordered follow up blood work two weeks later.

Earlier the same week as my follow-up blood work, I had been itching like crazy and had also had sporadic pain in my left arm. I coincidentally had just been to Barton Springs and the Zilker Park Botanic Gardens the weekend before, so the itch I could explain away as allergies. I had also been doing Crossfit for about a month at that point, so any body aches I had were easily explained as well. On Thursday, I went in for my follow-up blood work and the next morning I woke up with severe chest pain. The pain wasn’t debilitating and I had even gotten dressed to go to work thinking it was something mild like heart burn. However, in light of my mounting list of symptoms my mom and dad (thankfully) suggested I go to the ER. Luckily the health care system my PCM belongs to has a hospital in Round Rock, Texas about five minutes down the road from my house. They were able to pull up my labs from the day before very quickly and see that my white blood cell count had increased significantly.

After eliminating heart attack, they pretty much assumed it was pneumonia and ordered a chest X-ray– which I supposed looked fishy, so they ordered a CT scan which determined I had a mass and not pneumonia. They referred me to a pulmonologist the following Monday (coincidentally my 25th birthday) and I had a bronchoscopy that Tuesday. So after a week’s worth of obsession, that Friday they told me that the bronchoscopy samples were inconclusive. I was referred to a radiologist next for a more guided biopsy called fine needle aspiration which was performed last Tuesday. Last Friday I received the diagnosis– Hodgkin’s.

So many people ask how I took the news. I was honestly relieved. There was relief at finally having a diagnosis and being able to move forward to the next step. Also, after three weeks of obsessive Googling I had become extremely concerned about various forms of cancer. Not that any cancer is good, but many other cancers even at early stages have worse prognoses than Hodgkin’s does at even later stages. So when I heard Hodgkin’s, knowing it had positive prognosis rates and could even be cured, you can understand my relief.

So what’s going on now? I was referred to an oncologist who has ordered lots of tests this week. So far I’ve had a pet scan, fertility counseling with a bone marrow biopsy and MUGA awaiting me tomorrow and Monday respectively. I’ll also have to get a port-a-cath placement done next week as well, which will be used during my chemo sessions at some point in the future.

I don’t have a treatment plan yet for a few reasons. The first is we’re still in the process of staging, meaning they’re running tests to determine how long I have had lymphoma and if I have any other affected areas besides the mass in my chest. The second is that chemotherapy and radiation do a number on the reproductive system. In order to preserve the ability to have children in the future, I’m in the process of fertility counseling. The added challenge to this is that my husband is  active duty and currently deployed to Kuwait. This saga deserves its own blog entry in the future, but in short it’s a process that is time consuming under the best of circumstances. Adding the element that my husband is in a foreign country– frustrating and infuriating are two words that come to mind. That’s just what cancer patients don’t really have– time. I never thought I would say I hate weekends, but when you’re waiting to get results and trying to determine future treatment, weekends can be a pain in the ass for sure.

However, other than some soreness (which mainly results from the tests), I really don’t have any major symptoms. The chest pain pops up occasionally, but is almost nonexistent now. My only persistent symptom is the itching, which I’ve since found out is called pruritus. My mom and one of my sister’s (Sarah) have also blessedly and selflessly moved in with me for the time being until we can get my husband (Rene) home. They are pretty amazing, doing essentially all the house work, keeping me entertained and taking me to and from appointments when I’m too drugged up to do it myself. I also have an amazing support group of friends in the area which is a delightful mix of Louisiana folk (I’m a Louisiana native and LSU alum), church people, Army spouses and others. I also have a lot of support from afar. One of the “good” things about cancer is it really brings you closer to everyone that cares about you. Despite the bombshell I had to drop on my supporters this week, it gave me motivation to touch base with some of my loved ones that time and distance had separated me from. And I will say that I even enjoyed those conversations, because it allowed me to catch up with many of them. It also helped me rally my spirits knowing how many people were supporting me– what I’ve been referring to as “Team Laura.”

I’m hoping this blog will help me continue to bridge that gap as well and also help me connect with others that can help me through this journey through their own experience. I also want to help those that can benefit from mine.

The lime theme is in reference to the color ribbon associated with lymphomas– lime green. Hodgkin’s also claims violet, so I’m sure in time I will incorporate that as well.

My message to cancer today was…