Wednesday, April 25, 2012

Discussing Cancer with Children

A friend of mine brought this question up to me today and my mind started going a mile a minute and felt it was something that needs to be discussed. I do not have children of my own, but I have children in my life that I feel are mine because they have helped make me who I am today.

Depending on the age of the child I think really determines the depth in which the conversation goes, when I was asked about my hair by my favorite 3 year old I just explained that I was sick and the medicine that I had to take made my hair fall out. I fully understand that her mind could have easily wondered into the fear that her medicine would make her hair fall out but it never did, she was fully satisfied with the answer. I didn't sugar coat anything, I gave her the most simple answer I could come up with on the fly and if she had asked me more I would have told her more truths on the 3 year old level.

I never had to talk to my favorite 8 year old about cancer after I was diagnosed because his mother did and I have to say that she did an excellent job. She was truthful and explained that I was sick but that people with cancer are healed and used the example of his teacher because she is a young adult breast cancer survivor. I find it important not to bring up death until necessary because children need comforting not given more things to worry about when they probably already know something is "off"

Children are delicate and only you know how to talk to your own child or children that you care for or who may ask questions to you. When thinking about writing this post I did a quick online search and I found what I felt was good advice:

No matter what their age, it's important to talk with children about what's going on because:

  • They might sense that something is wrong and wonder if it is their "fault."
  • Their imaginations may create something worse than what is actually happening.
  • They may hear it from someone outside the family and feel disappointed that you withheld this important information from them.
  • Knowing what is happening will prepare them to support you during treatment and to understand that things are not quite "normal" for a while. 
Found here Talking with Children about Cancer

Other Resources for parents with cancer who have children:
Camp Kesem 

Tuesday, March 27, 2012

Phrases that Drive Cancer Patients Insane

...and the responses that roll through our minds as you say them, that we would like to say but really it would be mean if we did.

**Disclaimer I wrote this during a phase where I was very frustrated with the world and having cancer and a relapse within a month of being done with chemo** 

1) "I could never do what you are doing" AHHHHHHHH, yes actually you could, when you aren't given a choice of whether or not you want cancer you do what I am doing. You fight, you accept it, you deal with it and you move on.

2) "I love the hair, I could never cut mine that short" Again, actually yes you could, when you aren't given a choice you deal with whatever hair you have you deal with it and whether you can and cannot "pull it off" you always hold the cancer card and people don't care or you wear a hat and again people don't care.

3) "You're an inspiration" or "You are so brave for going through this" Thanks, but really I wish it weren't for going through chemo and handling it well publicly. I'd rather be an inspiration for teaching or sharing God, not for being a good cancer patient.

4) "I know how you feel" Ummmm not quite, until you've puked continually for 5 hours after someone stabbed you in the chest with a needle and then had a machine pump toxins into your body all while trying to fight the puking so you didn't make all 7 other patients around you puke and try not to get it on your clothes, just to go home have the most gut wrenching feelings across your entire body that make you just want to curl into a small ball in a dark room and not move for days all while not being able to drink normal fluids without them tasting funny for days that only made nausea worse. Or until you've lived a life where productivity is a walk around the neighborhood, a lap around Target or a trip to the grocery store. Or until you don't have a life that you control instead your days are decided by different doctors appointments and there is no telling when they may just put you in the hospital so plans aren't quite feasible to make in advance because who knows the cancer can come back quick and whatever you want to do will not happen because you will have a stem cell transplant. Or until you lose a part of your body so that way you can live. Really you don't know how I feel.

5) "Well, it will all be over soon" Actually no it won't, I'm not planning on dying so it won't be over but for the rest of my life I will have scans, I will have some fear either in the back of mind or in the front that it may be back. I will never be able to feel a lymph node on my neck or any where else on my body and be able to sleep. I will always have to live with this so it won't be over soon unless my life is because I have the scars both physically, mentally and emotionally.

6) "You are handling it all so well" It's because I have to, there are no choices here not handling it well would turn me into a hardcore hermit. You have the fight or flight mentality but the thing is you can't run away or not deal with this, so the only option is fight. Also just because I handle it well publicly doesn't mean it doesn't hurt, that I don't cry or ache or want to scream and have a total breakdown Steel Magnolias style.

7) "I'm so sorry to hear that" Yea me too, it wasn't quite the graduation present I was wanting. I would have been just as happy with an iPad.

8) "We're praying for you" Thank you (that's actually a sincere remark)

9) "Wow you used the bathroom quick and you're already standing up!" This was from a nurse at Emory after my VATS procedure. I'm 23 and yes even though I have a chest tube in at the moment I can drop trowel, pee into a bucket, wipe and get my shorts back on alone and stand up all within 2 minutes. I just can't walk and move this giant chest tube machine along with my IV pole.

**These two are from friends of mine**

10) From my friend who had testicular cancer "Hey bro, did you get to keep your ball after they removed it?" Honestly that one floors me and makes me cringe.

11) "Why are you injecting all sorts of toxins into your body? You should be using holistic medicine." Ohhhh I must have missed when you went to medical school. Really?! You're trying to advise me on what medicines I should be using to kill my cancer?! You work in RETAIL(really I don't know where these people worked but the person that tried told me about holistic medicine did) I have faith in my doctors and internet research that the route I am taking to abolish cancer in my body is going to get the job done better than drinking a lot of water and nothing else ever would, since I was drinking a lot of water when I was diagnosed in the first place.

What are the things that people have told you as a cancer patient that drive you insane?

Tuesday, March 6, 2012

You're now bald, what to do?

I guess during this topic of head coverings I'm about to reveal the many looks of myself. I'm not particularly self centered but I feel in many ways this post needs a lot of picture examples and I would rather use my own photos than borrow from other spots. This blog is by a cancer fighter for cancer fighters or anyone who is trying to learn more about cancer patients and issues they face from a personal experience. I am in no way a taught expert I just write about what cancer has taught me and the options and routes that I have taken to get to the point I am now.

Last week I wrote about hair loss and I consider hair loss a three part subject because you first have the hair loss, then you have the many options of what to do with the bald head and third you have the new growth and how/when will the hair grow back. If I put that all in one blog post it would be huge so I chose to keep them as their own blogs.

So now that your head looks very similar to these two pictures you may be very self conscious and that is understandable, also depending on where you live you need to have something on your head especially when outside to protect your freshly bare scalp from the sun. Everyone is different in their favorite approach and head coverings that they use I'm just going to give an overview of the ones I preferred and really used.

I found my favorite option of a head covering is just a baseball cap. When I shop and live in general I went au natural I got some looks and questions but overall people were very kind. I generally wore a ball cap in and out of stores to protect my head from the sun. I am an avid football fan and enjoy a good tailgate so a ball cap was always perfect and it looked feminine and very much me.

I also learned that once you lose your hair that your head and ears get very cold at times so my favorite colder weather feather are knitted caps. I would be lying if I said I don't own probably 10. These are in my opinion blessings from above especially since many of mine came donated from churches in the area from a grab bag at my treatment center. They also are very reasonably priced and I think are a great fashion feature for guys or gals.Plus even once your hair starts growing back they can be worn with no issues.
Before I realized that I would prefer ball caps or knitted caps I bought some scarfs from the cancer shop at a near by hospital shop. There were a wide variety that I bought over time from the easy to use turban scarf that helps you put it on easily to the normal everyday scarf that I bought from Target and taught myself to tie after attending a class intended on helping ladies with cancer feel better and learn a little bit and get advice from other ladies.
My tie technique used on a Target scarf

The scarf that I bought from the hospital wellness center
Wigs are fun, they make you look more natural and in many ways can make you feel more like you, also you can have fun trying different colors and styles for yourself and not have to worry about it. First bit of advice about wigs is they are expensive so before you buy call your insurance and find out if wigs or "hair prosthesis" are covered under your insurance. You will probably be as surprised as I was to find many times they are, my insurance covered my wigs prices 90% so I paid the full price of the wig but insurance sent me a check back covering all but $13, which is much better than it could have. Second with your wig make sure you really love the cut and it makes you feel like you and looks similar to your natural look especially the roots if your hair didn't have body at the scalp go with a more flat wig. I felt especially uncomfortable in my first wig that a lot of volume up top, plus the color was a little off to me. Third play with hair colors in the shop but get something that looks natural on you and that you like and I(and my mother) think there is high importance on the highlights in the color because they make the wigs look more natural than just a solid color.
The first wig

The second
Again with wig #2

Resources that helped me
TLC Catalog from American Cancer Society This is a good resource for inexpensive options and many head covering varieties
Look Good Feel Better I never attended a meeting but I have friends who did who would recommend it
Chemoflage If you're in Atlanta I would highly recommend this

Closing thought: Not everyone is the same, cover your head to make sure you feel beautiful or handsome and don't let anyone steal your sunshine. Everyone may have their input on what they think you might like/want but YOU have the final say. Also never feel ashamed of your bald head, it is beautiful and never let someone cover it in a way you do not want it is your decision not their's because they are not fighting you are.


Monday, February 27, 2012

Hair Evacuation

How to handle when the hair on your head decides to leave because of chemo honestly it one of the toughest things to do early on in chemo treatments. Not all chemo makes hair fall out but it is a reality that you probably want to think about early on in treatment because it is emotional. Up to this point in my cancer journey my hair has evacuated my head twice.

June 28, 2010 I took a shower and while washing my very thick and curly hair I was brushing out gel and hair products when my brush kept filling up with hair. I usually maybe filled my brush half way up by the end of the shower and that was "normal." On the 28th I filled up my brush twice full and it would have kept coming but I stopped brushing I could not and would not deal with it that day, and at that moment I knew I had to take the bull by the horns and cut it and shave it because if I had woken up with it all on my pillow I knew my level of emotions could not handle calling my mother to come home and get me out of bed.

July 29, 2010 I had decided it was the day for it to come off. I had 10 inches of hair so I was able to donate hair to Pantene Good Lengths which was another reason I felt I needed to take the bull by the horn and cut it off because along with wanting to be in control of the loss I did not want my length to go to waste.

Here are the weekend before picture and the soon after pictures 
I am in the black before my best friend's wedding

A few days after the shave, I still had fuzz since it all hadn't fallen out
I will say I may have over reacted the first go around about my heavy shedding of hair by shaving it but honestly at that point I COULD NOT HANDLE THE EMOTIONS. I cried myself to sleep every night it seemed for a month dreading the possibility of my hair falling out on my pillow in mass one night and waking up to an empty house while my parents worked to find the shock and horror of a pillow covered and bed full of my hair. With ABVD(my first chemo regime) my hair grew back slowly but it continued to grow throughout treatments.

This was my hair 2 1/2 months after I shaved it
Now let me explain to you the second time my hair evacuated my head April, 2011. Once I started intense chemo which mandated 4 days in the hospital to receive I had been warned that my hair would fall it, it was just going to be a matter of when. This go around I decided to be passive and experience my hair falling out on its own and it was definitely an emotional roller coaster.

April 20, 2011 I left the hospital after my 2nd round of ICE chemo and my hair was definitely loose. I told my parents and my mother said to stop touching it because she didn't want it to fall out (this was a bad theory overall and I should have just shaved it but I didn't want to). April 22nd my parents left on a cruise and I had friends staying with me and keeping me company for the weekend until my brother came into town on April 24th to stay with me for the week and he was bringing his beard trimmers to take care of the hair. On April 23rd I took a shower and honestly it was worst shower of my life, my hair was so loose and apparently most had evacuated its roots by then that it was just ready to fall out. I stood in the shower and clump after clump just kept coming as I was trying to wash my hair. Thankfully I had a small plastic bag in my bathroom so I hopped out of the shower soaking wet to grab the bag and I saw myself in the mirror and broke down. I spent probably 30 minutes sitting in my shower with the water flowing and a comb filling the bag with hair and crying.  I then realized some hair was still getting down the drain so I grabbed two paper towels (we don't use hand towels for sanitary purposes) and covered the drain to try to lessen the pipe back up issues and surprisingly it worked. Again this was THE. WORST. SHOWER. EVER. My brother got to town the next afternoon and finished up with the little bit of hair that didn't come out in the shower and I was thankful when it was all gone because I felt so terrible about myself with a few chunks of hair left. It was just awful and so emotional and possibly even worse than the first hair loss. And if my hair falls out again on the chemo I start this week I really don't know how I will handle it a third time. **I also did not photo document this time period very well because of hospital time and what not**

My hair took almost 6 months to grow back after ICE chemo, a SCT, and 3 weeks of radiation. This just proves how all chemos and cancer treatments effect not only hair evacuation but hair growth. My hair has been growing faster though since October and in 4 months than it did for almost 10 after ABVD chemo so the growing back is always an interesting experience.

Hair loss is just terrible, it is so emotional. Honestly there is NO WAY to make hair loss easy I wish there was but it's difficult no matter what you do. My best advice is to deal with it how ever you want. If you want to wear wigs, wear wigs or if you want to wear a hat buy 20, if you want to flaunt your gorgeous bald head go for it, and if you want to wear scarves learn how to tie them. I will have a post on head coverings to follow this up because there are a wide varieties of things that you can do to cover your head but the key is do whatever makes you feel comfortable.


Saturday, February 25, 2012

Fertility Rescue

This post is on the semi-controversial topic but ever so important topic of fertility salvaging before chemo or stem cell transplants. I originally started a post a year ago upon meeting with my fertility specialist the first time but it is so hard to put the entire experience into words everything in my head onto paper blog. Being 23, now 24, and single is just really weird/awkward to be discussing my fertility at all much less in a blog post.

I met with a fertility specialist to rescue and preserve my abilities to have kids with my future husband at some other point in my life and honestly it was probably one of the best and most important decisions I did in my journey to dominate cancer so far. It is so weird to think about and act upon fertility salvaging at such a young age with no prospective beau in sight. But with the chemo and SCT(stem cell transplant) was just that much worse on a body and with being told it renders most sterile my decision was pretty easy. My doctors recommended rescuing of eggs even though we didn't know the state of my eggs just from the cancer and my original 6 months of ABVD chemo. Faith and trust in your fertility specialist is key and during my first meeting with Dr. D he said "we might as well try because we can." and so we did.

After 3 weeks of fertility shots I was able to harvest 29 eggs and of those eggs 28 were viable which I feel has to be a percentile record or something since it was understood typically 1/3 of eggs harvested are not viable. 

The experience of fertility salvaging was one that I hold with extreme emotion still. Fertility salvaging is not for the faint of heart. I had to get over my fear of needles significantly with fertility salvaging. I had gotten over people taking my blood at the age of 21 when I coughed up blood and life started changing forever, but it was another step to have to give myself a shot was something that blew my mind. I mean I looked at the nurse like she had 3 heads when she told me I had to give myself shots. I did it though, I overcame, I conquered and I only gave myself a bruise once in three weeks of shots. One night I ended up on some reality show following alternative conception stories and a nurse was going through fertility shots and she had bruises all over her stomach so I felt much better myself and my shot giving abilities while praying she never gave a patient a needle of any kind.

Fear not though you will survive the daily blood draws, the invasive sonograms, and shots because at the end of the chemo you may be like me and your monthly gift from mother nature may not return. I have not had my fertility checked since the chemo and SCT last summer so I don't "officially" know it's gone for good but when normal natural functions are gone I begin to wonder. Fertility salvaging is a humbling experience because I at least know that when I have to tell my future husband about the side effects that chemo and my SCTs did to me and I have to explain that I may not be able to naturally conceive I have set up a back up plan that can be explored. I also say that to say this I have always believed adoption in my future as well and that was long before cancer and chemo ever came around and messed with my fertility. I am happy I looked at my options and was able to get egg harvesting fit into my tight scheduling windows.



This is the first post of the new blog that I have started to hopefully start a topic based blog on my experiences as a 24 year old cancer patient. My goal is to tell my story on a variety of topics related to cancer and I'm talking good, bad, and ugly I will probably get down right uncomfortable but well that's what happens with cancer and what people really want to know about. Please follow the blog and check back for updates.