Frequently Asked Questions

One of the biggest blessings throughout my cancer journey was that we were located in the Austin, Texas area when my diagnosis happened. Austin is a notoriously high young adult population area and is also home to the LIVESTRONG Foundation and several other great oncology treatment, research  and advocacy organizations. I really found that I had a lot of age appropriate resources and information available to me, that many of my counterparts in other areas did not. Access to fertility preservation resources is probably one of the most important issues that differentiates the young adult cancer community from everyone else. For those that do not know, many types of chemotherapy and radiation treatment can negatively affect the body’s reproductive organs in both men and women. Ever since I announced that I was having twins, I received a lot of questions from people about how I got pregnant, how long it took me, whether my twins were fraternal, whether they were “natural,” whether twins run in the family, etc. While a lot of these questions come with the territory of having twins, because I am a cancer survivor and discussed my fertility journey publicly I think it attracts even more questions. Which is why I thought it was the time to revisit the topic of fertility and pregnancy from a cancer survivor’s perspective. I personally do not mind these questions (depending on the setting, use common sense people) because I made a choice to discuss these issues very publicly when I was going through cancer. I also know that people’s intentions are usually not malicious and I also want to make sure people who are going through infertility issues feel like they talk to me and ask me questions if they need to. However, I will preface this by saying most parents of multiples do not feel the same way, so I don’t encourage anyone to bring this up with others unless they have expressed a willingness to discuss it (and there are about 5 million blog posts out there about why you shouldn’t.)

I have discussed my fertility preservation experience quite a bit on my blog, and also spoke about it at a Leukemia & Lymphoma Society fertility forum a couple of years ago (see June 2012 and March 2013.) To recap, I underwent embryo preservation through invitro-fertilization prior to having chemo in June 2013. I also took lupron shots for the remainder of my chemotherapy and radiation treatment, which shut down my ovaries during that time period. Although originally designed for men undergoing treatment for prostate cancer, lupron use in women undergoing cancer treatments actually can help preserve ovarian function. I actually would like to segue here and just say one of the reasons I don’t get into the whole “which disease deserves the most research funding debate” is because of things like this. Many therapies designed for one purpose, can actually have unintended benefits for other purposes as well. The human body is extremely complex and amazing and I won’t pretend like I know better than someone else by saying what research we should and should not support.

Anyway, long story short, lupron worked for me. I was given the “green light” to start trying for a child six months after I ended radiation treatment. From what my oncologists told me, this was a pretty short time-frame and that one year is a more standard recommendation for people in remission from Hodgkin’s Lymphoma to wait before trying to conceive. I was very blessed my diagnosis was caught early, so I had much lower chemotherapy and radiation exposure than the average Hodgkin’s patient, which is why we were able to start trying sooner. However, many people are advised to wait much longer, or even forever, before trying to conceive. How treatment affects fertility is really very dependent on the diagnosis, the treatment received, the length of treatment or even just how that particular individual responds. Also, the damage done to the body during treatment can be so extreme that they physical cannot conceive and even if they are able to conceive, they are advised not to due to a variety of possible health concerns. And some of it is still a mystery, there’s just not a ton of research in this area yet.

I found out I was pregnant about six months after receiving the “green light,” which was just long enough for me to get extremely anxious and concerned. I think its common for survivors to feel like they are waiting for “the other shoe to drop” and I would think to myself that maybe this was it. I wouldn’t be able to get pregnant. The month I found out I was pregnant I went in for a check-up with my fertility specialist who insisted everything looked great. A few days later I found out I was pregnant. When I found out it was twins 10 weeks into my pregnancy, I was incredibly happy but also extremely shocked. As I mentioned in my blog previously, a psychic I went to at Voodoo Fest in 2006 predicted I would have twins and I would occasionally joke about having twins after that, particularly after we went through IVF, but I never genuinely believed it would happen for us. It truly was one of the happiest days of my life. However, I will say amid the joy, there was also a lot of anxiety. One of my first thoughts was “Oh my gosh, now I have two of them to worry about!” You don’t have to be a cancer survivor to know that there is a lot of fear that comes with being pregnant. With twins they pretty much tell you upfront you are at higher risk for almost every possible complication. As a cancer survivor, I was at higher risk for even more complications. Whether it is statistically true or not, I felt like my chances of something going wrong were  infinitely higher than average, and I was extremely scared that something would happen to one or both of my babies, that we would find out my body was unexpectedly damaged from chemo and  wouldn’t be able to handle the stress, and about a thousand other doomsday scenarios ran through my head.

I also felt like I didn’t deserve so many amazing blessings, especially in such a short time period. I really look back on those early months and realize there was a lot of survivor guilt at play. Why am I still alive and others aren’t? Why was I fortunate enough to have great health insurance when others are hundreds of thousands of dollars in debt with medical bills? Why was I blessed enough to pay for IVF AND get pregnant without assistance? How is it fair I got pregnant so soon when others can’t? Why am I so lucky to have TWO healthy babies when so many people can’t have one? How is it fair I am already out of treatment and PREGNANT when people who were diagnosed before me are still in the middle of their fight? Why is it fair that I have a job? And benefits? etc.  There was also anger AT THE GUILT. I just want unadulterated happiness DAMMIT, why do I have to have all of these OTHER FEELINGS swirling around. So many paradoxical emotions existed and its really just hard to explain to someone unless they have been there too. All I can say is I gave it to God, and I got through it. I accepted that this was my journey whether it was fair or not.

At the end of the day, it is the way it is. I had an amazing twin pregnancy. My kids were full-term, healthy, had no nicu-time and I am still healthy. I did not have a stroke, I did not have a heart attack, I did not have a blood clot or preeclampsia or any other thing I was convinced would happen. I was lucky. I was blessed. And I am extremely happy.

So to answer some of those FAQs:

Are they identical or fraternal?

Fraternal.

Are they boys or girls?

Boys.

Did we use fertility assistance?

Obviously this whole post is the answer, but the short answer is no. However, I would not be surprised if the fact that I had been on lupron did  cause me to hyperovulate (release more than one egg) when my ovaries came back online. According to my doctors, my past treatment should not have played into affect, but its one of those things that not a lot of research exists for. My body went through a LOT in a short period of time, and there’s no telling how those experiences may have affected my ovaries. I have run into a lot of people who have had twins without assistance after prior fertility treatments, so it does happen, but current research says there is not a cause and effect relationship.

Do twins run in the family?

For the record, identical twins (according to current research) just happen randomly and do not run in the family. Since I have fraternal twins and they are cause by hyperovulations which can be passed down through the mother’s side of the family, it is possible there is a family connection. At the time I got pregnant, I actually thought that twins did not run in my family. However, recently we found out there were quite a few twins on my great-grandmother’s side of the family and for whatever reason, two other cousins from that branch have also had fraternal twins recently, even though twins haven’t occurred for several generations prior to our’s. So it is possible they “run in the family,” and I would have hyperovulated even if I never had cancer.

What are you going to do with the embryos?

I don’t get this question often, but it is the hardest one to answer. It’s honestly not something I can discuss at this point because we just don’t know yet, and honestly I might never want to discuss it publicly. Will we want more kids, will we not? Will I be able to get pregnant again? All these things remain to be seen. However, for anyone else who is in a similar situation, there is a great blog post on Twiniversity.com that discusses what the typical options are for people who no longer want to use embryos from IVF.

Finally, do you wish you had never done IVF prior to treatment since you got pregnant without assistance?

This is another tough question. Would it be nice to have that money back? Of course, it was a life-changing amount of money. Would it have been better to avoid daily shots, hormone therapy, surgery, etc. Of course. But the answer is no. I do not regret having IVF. For whatever reason, these were the kids I was meant to have at this point in my life, and I probably wouldn’t have had these specific kids if I had not gone through cancer and if I had not done IVF. We had to make a lot of difficult choices in a short amount of time and we did the best we could. I will never regret those choices. I have two amazing kids because of those experiences and I wouldn’t trade them in for the world.

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Six Months Cancer Free!!!

I wanted to let everyone know that I had my official follow-up with my oncologist yesterday and received the results from my PT scan, and I’m still cancer free!!! I’m so relieved, I can’t even express it. I know I seemed like a cool character last week, but I had pretty much convinced myself that every little itch/random pain was a direct result of returning cancer. Whew!

In even more good news, the PT scan detected “activity” in my left ovary that is “consistent” with ovulation. I didn’t even know PT scan could pick up on that, the more you know! As you might have read in my earlier entries, I went through fertility treatment leading up to my cancer treatment because there was concern that chemo/radiation would leave me infertile. Although we won’t know until we actually start trying to have kids how everything is operating in that department, at least there’s a good indication that things are on the right track!

Which brings me to another topic. I won’t be blogging for a a few days since I will be traveling to New Orleans for a good friend’s wedding. Coincidentally, I happened to be invited to speak at a Fertility Forum hosted by the Leukemia & Lymphoma Society and Stupid Cancer in New Orleans on Thursday as well. I will discuss my journey through fertility and IVF treatments in order to help other young adult cancer patients, parents and healthcare providers understand some of the problems young adults face when facing these choices. I’m super excited/nervous to have this opportunity to tell my story and help educate others. Wish me luck!

Lassie Love

To say I was involved in college, doesn’t even begin to scrape the surface. I held leadership positions in at least four student organizations (that I can think of), memberships in several others, wrote for the student newspaper for awhile, worked as a resident assistant for three years and held a variety of internships. I also, of course, managed to make time for tailgating and football on Saturdays in the fall, and did my fair share of partying. Though there was definitely room for improvement in my GPA, I was still accepted into the #1 advertising school in the country (which I chose not to go to for some reason) and also received assistantships/scholarships to several other graduate programs. You’re probably thinking, “Man, this chick is really bragging on herself.” However, I have a point and I’m about to get to it.

Though this is really a topic for another blog post, my advice to anyone about to start college is to 1) live on campus at least a year, and 2) get involved with student organizations. Not only are these tips statistically proven to increase graduation rates and GPA, but they also provide students with the opportunity to learn essential professional and relationship building/managing skills that will be used the rest of their lives. I can also trace back roughly 2/3 of my relationships and extended network back to these two tips.

I spoke a lot about the friendships I made through the Manship School of Mass Communication in an interview a few months back. However, before we get to today’s guest blog post, I really need to spotlight one of the student organizations I was in. I pledged the Army Scotch Guard, a non-greek sisterhood and service organization, my first semester at LSU. I can’t even begin to cover the importance of which my experiences with Scotch Guard have played in my life. Scotch Guard was founded by a Scottish man, which explains why our mascot was the Scottish terrier, we wore plaid uniforms and we called ourselves “lassies.” I became obsessed with all-things Scotty-related and eventually got my adorable fur-baby, Frasier, as a consequence.

The photo below was taken the day Rene & I picked Frasier up from the breeder in Oklahoma, Thanksgiving Weekend 2010. Note the Scotch Guard sweatshirt I’m wearing.

puppy frasier 2

Rene & I were also married by a Scotch Guard alumna as well. Several of my best friends are people I met through Scotch Guard (I’m even serving as a bridesmaid in one’s wedding in March.) Since Scotch Guard is affiliated with the ROTC, many Scotch Guard lassies are also either in the military or are military spouses, so I often find myself turning to them for military-related support and advice. Another lassie, Britni, coincidentally moved to Austin around the same time as me and was a tremendous support throughout my cancer journey. She even walked on my Light the Night team in November.

I can really spend all day talking about how the relationships I forged through Scotch Guard have benefited my life. However, the point is that relationships are important and you never know what role people will play in your life when you first meet them. My advice to other cancer fighters/survivors is not to be afraid to reach out to those old friends, friends of friends, acquaintances, or anyone else you think might be able to help you… no matter how long its been since you last spoke or saw each other (or even if you have never met). Support is everything. And they will most likely be happy to help.

Which brings me to another fellow lassie– Megan. Megan and I met in 2005 when I first joined Scotch Guard. She was a few years ahead of me, so we didn’t get to know each other extremely well before she graduated. However, one thing I always remembered was that she was a passionate volunteer for the Leukemia & Lymphoma Society. I had a vague recollection that she may have been some type of cancer survivor, but I honestly was foggy on the details. When I found out I had Hodgkin’s Lymphoma in May, I immediately thought of Megan. Luckily, we had remained Facebook friends in the six years or so since we had last seen each other (gotta love social media!) So I sent her a Facebook message that went sort of like this, “Hi Megan, I know I haven’t seen you in many years, but I think you might have had some sort of blood cancer (maybe?) and I just found out I have Hodgkin’s. Please help! P.S. Congrats on the marriage! Lassie Love!”

It turned out that Megan had actually also been diagnosed with Stage IIB Hodgkin’s Lymphoma about 10 years before at age 17. From that very first Facebook message, Megan gave me amazing information and advice. Among many many things, she gave me some insight on what to expect from the ABVD chemotherapy we both had (constipation anyone?) and also referred me to a great program with the American Cancer Society called Look Good/Feel Better. One of Megan’s sage pieces of wisdom is very fitting for this blog entry:

“It’s so so so important to have as many resources in your back pocket as you can when you go through something like this. Take hold of all of the supportive people in your life and make sure you are still doing some things that bring you a little joy each day.”

She’s still playing an amazing role in my life today, and even arranged an opportunity for me to speak at the New Orleans’ LLS chapter’s Fertility Forum for cancer patients & medical professionals in March.

Fertility Forum Save the Date 2013

Megan is now a 27-year-old clinical psychologist and very graciously agreed to do this guest blog post for me. Hopefully others will benefit from her experience like I did!

Q&A With Dr. Megan:

Megan Armstrong

Please give me a timeline of when you started suspecting something was wrong, receiving the diagnosis and treatment.
I started to suspect that something was wrong around Christmas-time in 2002. I just felt “weird.” I had a fever and a dizzy spell that came without explanation. Not too long after that, I started to notice that there was a lump on my neck. It wasn’t very large and really could have been mistaken for swollen lymph nodes due to an infection. First step was to see my primary care doc. I believe I tried two rounds of antibiotics to get rid of the “infection.” That didn’t work so I was sent to an ENT. He wanted to just wait, so we watched and waited for quite a while. I honestly can’t remember how long it was, but I do know that looking back, my parents were infuriated that he wasn’t aggressive enough. I eventually saw another ENT (same hospital) and had a needle biopsy in early March. We received a call that the results were “suspicious,” so I was scheduled for surgery.  I underwent surgical biopsy of the lymph node and by that time, it had grown in size, and was noticeably larger. I was diagnosed a few days later.
What were your initial feelings/reactions to receiving the diagnosis?
Honestly, when my family and I got the call that it was cancer, I really think we felt relieved. It was, of course, a somber moment. I remember my mom answering the phone, me running around the corner to watch her expression, and her telling me the answer just by the look on her face. I never thought I could feel devastated and relieved at the same time, but it’s possible. When I say relieved, it was a feeling that, “FINALLY, we know what it is!” It had been almost THREE months of waiting. More than anyone, 17 year olds really hate waiting because we’re all about immediate gratification! Now that we knew what it was, we could figure out a plan of attack. I became the most outwardly upset at my first visit with the oncologist. The chemo process sounded so scary, though I was very intrigued to hear that I could EAT while getting chemo! The worst part was hearing that I would indeed lose my hair. Hands. down. the. worst. part. I knew that it would likely happen, but having it confirmed was awful. I cried and cried. I cried so much that the nurses let me use the internal staff elevators to go throughout the hospital for my various tests so that I wouldn’t have to see anyone. For their kindness and patience, I am so thankful!
Has being a cancer survivor guided your life choices in any way? If so, how?
100% yes. You know, I’m a fortunate person because I’ve always been bright and motivated. I knew that one day I would do good things, but now I feel that I do and will continue to do GREAT things. Leaving high school, my intention was to study nursing at LSU. After a semester, I realized it wasn’t what I really wanted, so I had to do some soul-searching. I thought long and hard about what I really loved and what I’d be good at. I started to remember how much I loved my Psychology class in high school and it went from there. Throughout graduate school and beyond, I made the decision to become a psychologist who provides care to cancer patients and their loved ones. It has been an amazing and incredibly fulfilling. To be completely candid, sometimes I feel like I endured cancer so that I could serve a purpose on this earth – to improve the lives of those who are suffering from similar illnesses. That may not be completely true, but it’s at least my way of thinking about it. Perception is everything. 🙂
Do you assist oncology fighters/survivors in your profession? How so?
Currently, I do not in my paid profession. I had the unique opportunity to take a research position working with patients who have HIV/AIDS. I believe that while there are some differences between the diseases, there are some significant similarities. I absolutely love what I’m doing and I’m happy to have expanded my practice to other chronic illness groups. I do volunteer quite a bit with Leukemia and Lymphoma Society, so I am able to maintain a presence in the cancer community in that way.
What type of challenges do you think are unique to young adult cancer survivors?
I think living with cancer at a young age is unique because it occurs at such a pivotal developmental time point. At times, young adults fall into an unfortunate gap. On one hand, you are no longer a child, and while you get support from your parents, you don’t want to rely too much on them because you are at the stage of wanting to differentiate yourself and become autonomous. On the other hand, you don’t feel completely like an adult either. You’re just at the point of trying to figure out who you are. Cancer gets in the way of that process. Ultimately, that can be a good thing, but in the moment, it is NOT pleasant!
What is your biggest piece of advice to young adults that are first diagnosed, in treatment, and in recovery? (You can separate these out if you need to!)
The first thing I’d say to young adults at first diagnosis is – It CAN be done. I was treated in a hospital for adults and was by far the youngest patient there. I never saw ANY examples of young patients and didn’t know of any young adult survivors. For those who may have a similar experience, I want them to know that you CAN get through this. Throughout this process, be mindful. When I say be mindful, pay attention – make the choice to pay attention to the small pieces of light and goodness that are happening. At times, it won’t feel like much is good. I look back and realize how many people sent cards/flowers or said prayers. I was/am so loved. Much like everyone who is caught up in the day to day, I have to remind myself to be mindful of those things. Oftentimes, when we are thrust into a difficult situation, it’s easy to only focus on what’s going wrong. I am in no way saying that cancer is great and fun – NO WAY!! I just want to point out that there is potential for a great personal growth. Having cancer as a young adult means you are an ordinary person faced with extraordinary circumstances – just try your best. You will never be perfect at coping with it, so accept that.
Please describe any challenge you might still have 9-10 years out of treatment.
My answer for this would be the same as it is for 20, 30, 50, 70 years out of treatment. I’ve learned that if you are diagnosed with cancer, cancer will forever be a part of your life.  Some days I think about my cancer experience and some days, I don’t. I tend to think about it more if I have an follow up appointment approaching soon. I struggled quite a bit the first 5 years out because I was hyper-vigilant about any little body ache/pain I felt. If this is you, you’re not alone! I can say that it gets better over time, but it will never go completely away. I’ve accepted that. The farther you get away from it, the easier it becomes. Overall, I’ve embraced that I’m a cancer survivor and I”m proud of it!!!!

Inspirational Individuals on the Ides (ish) of November

So I had this whole idea for a regular monthly blog topic called Inspirational Individuals on the Ides (I^3). I totally thought the 15th was the “ides” of every month and apparently that’s not quite the case. You can find a neat little history lesson on how the ides of months are determined here. (And yes, I do know I sound like a dork. And no, I don’t care.)

I was being interviewed for the Manship School of Mass Communication’s (my alma mater) website a few days ago and one of the questions was “why did you decide to start the blog.” Part of it was to keep my friends & family in others state updated on what was happening regarding my cancer diagnosis. But I had already established a private blog that I could use for that purpose. I really just had this inner drive to document what was happening to me because I know as someone waiting to be (or newly) diagnosed, I was scoring the internet for any information of what other people in my situation had been through. For example, I wanted to make sure that any other army spouses out there trying to get TRICARE to pay for a wig could learn from my experience and avoid some of the pitfalls I encountered. For another, I really had no idea what to expect from radiation. No one told me I was going to have to be tattooed ahead of time, or that I’d have to wear a mask and stay absolutely stationary for long periods of time. I knew all of that because of the blogosphere and other people’s experiences, so I was prepared, but those issues easily could have thrown me through a loop. Knowing how much I benefitted from blogs in the days leading up to my diagnosis, made the decision to blog very natural.

I think another major influence is the fact that I have grown up and come of age in a time when so many inspiring individuals have bravely discussed their illnesses or disabilities very publicly in order to raise awareness and research funds, and to empower and educate others. I’ve already talked about quite of few of these individuals: Robin Roberts, Scott Hamilton, Lance Armstrong, Michael Douglas, Shannon Miller, etc. I’m sure I’ll spotlight quite a few of these characters and other well-known people in the future. But this month I want to take a few minutes to spotlight someone who did not grow up in a time when people were very vocal about their illnesses. When people couldn’t find information through a Google search. Survivorship issues didn’t really exist because most people didn’t survive. She was not wealthy or famous. In fact, her real name wasn’t even known for many years. She was instead referred to by the first two letters of her first and last name.

Image

November’s Inspirational Individual on the Ides is Henrietta Lacks. I first heard about Henrietta Lacks at the September meeting of BAG (Books are Glorious) Ladies, my monthly book club. We were trying to decide what books to read in the upcoming months and someone suggested “The Immortal Life of Henrietta Lacks” by Rebecca Sloot for November. As she was explaining the book to me I was immediately hooked.

Henrietta Lacks was a 30 year old African American woman and mother of five who was diagnosed with cervical cancer in 1951. She received medical care at a free clinic at Johns Hopkins. While she was unconscious for a procedure, they took two samples of her cervix, from both the healthy and affected areas. A physician at Johns Hopkins, George Otto Gey, used samples from the people that were brought into the free clinic regularly for medical research. It was not legally necessary at that time to ask living patients for their consent for these procedures, and it is unknown whether Henrietta ever knew the samples were taken. What is known, is that Henrietta forever changed the medical community.

Although Henrietta died from her cancer a mere eight months after this procedure, many of her cervical cancer cells are still alive today in the form of HeLa, the first ever line of immortal human cells. Since then, her cells have helped cure polio, create new cancer treatments, determine the number of human chromosomes, and countless other medical advancements. They even went into space to test the effects of zero gravity on human cells before any human made the journey. Before HeLa, scientists had no way to safely test human tissue. Her contribution to medicine and science is truly invaluable. And yet she lived in a time when African Americans were segregated in hospitals. When she had only one hospital to go to period, because it was the only one that served African Americans in her area. When even blood donations were segregated by race. Her surviving family never received any financial compensation for HeLa from the medical community. They couldn’t even afford the medical advancements the HeLa cell’s generated.

Just recently, Rebecca Skloot author of “The Immortal Life of Henrietta Lacks” has set up The Henrietta Lacks Foundation to help Henrietta’s descendants and others who have made contributions to medical research without financial gain of their own.

Henrietta, I want to say “thank you!” Thank you so much for your contribution to science. I have personally benefitted from it tremendously. Your cells helped develop and improve effective chemotherapy and radiation therapy treatments which saved my life. They also helped develop invitro fertilization, which has created four embryos that might one day be my children. Thank you thank you thank you from the bottom of my heart. I can’t imagine how scary things were for you. I’m so sorry that you were not fortunate enough to live in 2012 and benefit from the resources and research that I do because of you and others like you. I truly owe you my life.

You have given so many people the happy ending you so rightfully deserved.

Dance dance wherever you may be

Today was such a wonderful day, I just felt so alive, energetic and blessed! I really feel like today was such a gift. I’ve felt better than I think I have since before I went into the ER back in April. I just thank God for all the happiness in my life and pray to hold on to this feeling for the days that aren’t so great. When I got home from work I also received a message from a friend of mine who is a Hodgkin’s survivor telling me about a potential speaking opportunity this fall in New Orleans to discuss fertility in young cancer patients. Everywhere I look I see signs that I’m exactly where I need to be right now and that everything is as it should be, with or without cancer.

I’ve been humming my favorite hymn since I got home from work:

The Lord of the Dance

I danced in the morning when the world was begun

And I danced in the moon and the stars and the sun

I came down from heaven and I danced on the earth

At Bethlehem I had my birth

 

Dance dance wherever you may be

I am the Lord of the dance said He

And I’ll lead you all wherever you may be

And I’ll lead you all in the dance said He

 

I danced for the scribe and the Pharisee

But they would not dance and they wouldn’t follow me

I danced for the fishermen for James and John

They came with me and the dance went on

 

Dance dance wherever you may be

I am the Lord of the dance said He

And I’ll lead you all wherever you may be

And I’ll lead you all in the dance said He

 

I danced on the Sabbath and I cured the lame

The holy people said it was a shame

They whipped and they stripped and they hung me high

They left me there on a cross to die

 

I danced on a Friday when the sky turned black

It’s hard to dance with the devil on your back

They buried my body and they thought I’d gone

But I am the Dance and I still go on

 

Dance dance wherever you may be

I am the Lord of the dance said He

And I’ll lead you all wherever you may be

And I’ll lead you all in the dance said He

 

They cut me down but I leapt up high

I am the life that will never never die

I’ll live in you if you live in me

I am the Lord of the dance said He

 

Dance dance wherever you may be

I am the Lord of the dance said He

And I’ll lead you all wherever you may be

And I’ll lead you all in the dance said He

 

 

IVF with Cancer

Since my port placement, I haven’t had a lot of specifically “cancer stuff” happening. Rene and I enjoyed a nice, long weekend for Memorial Day last week. We did our fair share of laying around the house, and Rene’s parents also came down from Waco and we went to the zoo, played Fact or Crap, made a frozen yogurt trip, and ate at a German restaurant (the land of Rene’s & his mother’s births). I was able to go back to work on Tuesday for most of the week, and I have to say I was ready! Although I do enjoy my “cancer uniform” of sweats and over-sized button downs, it was nice to feel well enough to go to work and have somewhat of a routine for a few days.

What brings me to the topic of this post is that while I haven’t had any cancer-specific appointments since my port placement, I have been undergoing fertility treatments. Since I chose to blog so publicly, I waited awhile to make this entry because its such a sensitive topic to so many people, I wasn’t sure if/how I wanted to approach it. I also wanted to have as much information as possible to share with you, in case this blog turns into an early resource for someone who just found out their own diagnosis. Unfortunately, possible infertility is just one of the many harsh realities that both male and female patients have to deal with, and my goal with this blog is to be as open and honest about the experience as possible.

I was extremely fortunate that the possibility of infertility was brought up with me early on. From what I understand, not everyone is given that information beforehand and have since struggled to have children. The pulmonologist was the first doctor I saw after my diagnosis and he made sure to put it on my list of things to ask the oncologist about. The oncologist also made an appointment for me with a fertility specialist the same week I saw her. Fortunately, the fertility outlook for the form of chemo I’ll be taking is fairly positive, however, the chance was still high enough to be a concern. Rene and I always wanted to be parents, and although I’m open to adoption, having biological children isn’t a door I want to risk closing just yet. In addition to chemo, I’ll also be doing radiation during my treatment which also has its own set of risks. Since we can’t predict how well I’ll respond to the initial treatment, it’s always possible they could try something that might be less friendly to fertility as well.

Being in our mid-20s and only having been married about 2 years, Rene & I had never attempted to conceive before. My knowledge of ultrasounds was based on one surface ultrasound I had a couple years ago when someone suspected I had ovarian cysts, and I was told to have a full bladder so they could more easily read the ultrasound. So I went to my first fertility consultation appointment thus, and quickly discovered I would be having a vaginal ultrasound and a full-bladder is actually not a good thing to have. It was uncomfortable for me and the doctors kept complaining that my bladder was “in the way.” Just a head’s up for anyone going in for fertility counseling, but I digress…

Once they determined I was otherwise healthy and fertile, the doctor explained to me that there’s several options:

Egg harvesting: I take hormone shots that encouraged my body to release a large quantity of eggs and then the doctors go in and get them. Afterward they cryofreeze them until Rene & I are ready to have a baby, and then they thaw them, fertilize them and implant them.

In vitro fertilization (IVF): Egg harvesting + using sperm to actually fertilize the eggs and create embryos. The embryos are then frozen until we’re ready for them and then they’re implanted.

Lupron: A monthly shot that basically shuts down the ovaries. Studies indicate that women who are on lupron during treatment have a higher chance of fertility afterward.

My doctor recommended IVF because its the most reliable method, and also using lupron throughout my treatment. If any other Grey’s Anatomy fans recall, Izzy & Alex did IVF a couple of seasons ago for the same reason. (Maybe they’ll bring Izzy back for this potential plot line for the future?) Although egg harvesting and storage is now becoming more available, there’s just not a lot of research on how well those eggs fertilize after being cryofrozen for a time. A lot of women are in the process of freezing eggs, but not a lot of women have retrieved them yet. The research they do have indicates that embryos are more likely to result in viable  pregnancies than the eggs being fertilized after being frozen. However, a lot of people do choose egg harvesting because its more affordable and because many women are single and would rather save their egg’s for Prince Charming’s sperm rather than donor sperm. Whatever the situation, people choose different methods for different reasons.

I’d love to say we did a lot of research, soul searching and praying before making our decision, but that just wasn’t the case. Given the fact that I a) have cancer, and b) was about to start my menstrual cycle, we had to make a decision extremely quickly and we opted for IVF. It just felt like the “right” path for us. To allude to Hunger Games, the odds have NOT been in my favor thus far in the sense that I’ve been diagnosed with cancer at 25 period. We always wanted to be parents and I wanted to increase our odds at having little Rene’s and Laura’s in the future as much as possible. Unfortunately, IVF is not a cheap route to take and right now most American insurance companies don’t cover it– including TRICARE– which is the military insurance that I have because Rene is active-duty. IVF is generally between $10-15K per treatment, and our experience has fallen into that. Luckily, TRICARE will cover everything else related to my cancer treatment and we decided it was a cost that was worth it for us.

The nurse did refer me to several charity programs out there for people who are undergoing fertility treatments due to cancer though, so I definitely recommend anyone in a similar situation to check them out. Lance Armstrong’s LiveStrong Foundation (which happens to be based locally in Austin, TX) has a whole program dedicated to fertility called FertileHope.org. FertileHope works by offering a list of participating clinics that offer discounted fertility services. In addition to the FertileHope discount, we also qualified for a military discount, and the estimate we received for IVF at the Austin-area clinic was around $7,500. Coincidentally, my friend (Jersey City) Amy had connected me with her friend Victoria St. Martin who went through IVF last year due to breast cancer. She did IVF through another charitable program, the Sher Institute (HaveABaby.com) and referred me to their participating clinic in Dallas (about 3.5 hours away). If you’re interested in learning more about her journey, you can visit her website at breastcancerat30.com. She’s been an amazing resource for me throughout this experience.

The quote we received from the Dallas clinic was about $5,500. Unfortunately, the charitable programs weren’t able to offer long-term storage of the embryos and future implantation was going to be at least $3,000. In the end, we opted to stay with our physician at our current healthcare system since we already had a relationship built with them and they were able to offer us a payment plan on a package that included harvesting, storage and future implantation for about the same total price. We also were not up to driving to and from Dallas due to cost and time constraints. So although it was more money upfront, it will probably pay off for us in the future and be more convenient since we won’t have to travel as far. We still have to travel about 45 minutes north to our healthcare system’s headquarters. Again, this is just the route Rene & I chose, it’s really specific to the situation. I would say that if I had been single or didn’t have TRICARE to cover my additional expenses, or lived in Dallas, etc. I probably would have gone with the charitable organizations. I think it also was a great option for those interested in egg harvesting, which was around $1,000 or less. The additional resources page on FertileHope was also a tremendous help, http://www.fertilehope.org/financial-assistance/additional-programs.cfm. They also offer information about options for men going through cancer treatment as well.

Before I even left the office at my first consultation, we started the IVF process. They decided to go ahead and give me my first lupron shot. As mentioned earlier, women can receive this shot to help preserve fertility. Lupron also serves a purpose in IVF because it prevents early ovulation. The doctor decided to go ahead and give me the lupron shot because even if we opted against IVF, it would be good to have a lupron shot in my system for when I started chemo. The second step was my doctor personally wrote a letter himself to my husband’s commanding officer. The essential message of the letter was, “I need Rene’s sperm!” Not a topic your doctor usually has to discuss with your husband’s boss, but there’s the Army life for you. Rene was still in Kuwait at the time, and his leadership had been waiting for a treatment plan for my cancer before they decided if/when to send Rene home from deployment early. Luckily, the letter worked its magic and Rene was back home within 48 hours! I don’t think I’ve expressed enough gratitude to the Army for this, so thank you thank you thank you!

The next step was waiting for my period to start which was a couple days later (TMI, I know). They had my fertility meds shipped to me the next day. The meds really have been an adventure unto themselves. The primary med is Bravelle. Bravelle comes in a powder form that we then have to mix together with sodium chloride and administer the shot ourselves. Upon learning this, our first thought was, “Uhh…… are we qualified to do this?” FreedomPharmacy also sent us a how-to video that we watched the night before (and rewatched the day of the first shot) to help calm our nerves. Luckily I had Victoria as a resource to give me tips. We also called the nurse twice for reassurance that small air bubbles wouldn’t kill me, etc. The Bravelle comes in boxes with five vials to take a day. Fortunately, the nurse informed that I didn’t have to take five separate shots a day, but can mix the vials together for two shots a day. I take 150 iu (two vials) in the morning, and 225 iu (three vials) in the evening for a period of 10 days. They can either go in the fatty tissue of the stomach, or the thighs. My friend Victoria swears by the thigh, but I found that the tummy was easier. So again, it’s just a situational thing. Victoria found it easier to do the mixing herself and have her boyfriend do the shot. Since Rene felt qualified given his experience of administering a grand total of one IV for deployment training, we had initially planned to take this route as well. However, when push came to shove I preferred to do the shot myself. I liked having control of where it was going and when! I started last Thursday and today is my last day. Tonight at exactly 8 p.m. I have to give myself a shot of Novarel (HCG), which basically will tell my body its time to ovulate. I’m pretty intimidated by it as the needle is quite a bit longer, and I’ll have to use more solution, which means it’ll take longer to inject. Those milliseconds really seem like a long time when you’re giving yourself a shot!

My egg retrieval will be Monday morning. I’ll know that day how many eggs they’re able to retrieve, and by the end of the week we’ll know how many fertilized. Unfortunately, IVF is not an exact science. They might not be able to get every egg that is released, and not every egg will fertilize, and not every embryo will implant, etc. There’s also the tragic situation that I’ll ovulate early and they won’t be able to get any eggs. As my doctor explains, ovulation is one of mother nature’s greatest instincts and she doesn’t always like it when we try to mess around with her. However, all my tests and ultrasounds (of which I’ve had many the past two weeks), have been positive, so I’m very hopeful by this time next week I’ll be able to tell you how many embryos we have. We also made the decision that any embryos that we have that go unused will be donated to other couples. Although it will be weird to have biological children out there that we don’t even know about, I’d be happy knowing we may have been able to help another couple have a family. Again, it’s a personal decision people going through IVF might have to consider.

Interestingly. when I went to Voodoo Fest in New Orleans in 2006, a psychic told me I would have a set of fraternal boy/girl twins. At the time I rolled my eyes because no one in my family has ever had twins to my knowledge, but now I’m seeing how it might be a possibility since IVF increases the chance of multiples.

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Thanks to Facebook, I still have a photo of my 19-year-old self paying apt attention to the psychic who told me I would one day have twins at the 2006 Voodoo Festival in New Orleans.

Victoria was also told she would have twins by a different psychic. Maybe this is a go-to prediction psychics give young women? Who knows. The odds of that prediction being correct for most women are certainly not in their favor! Only time will tell I guess!

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…