One year

It was one year ago that I was diagnosed with Hodgkin's lymphoma. The Leukemia and Lymphoma Society call it Hodgkin's disease, but my oncologist called it lymphoma, so that's what I call it.

I was just starting at an internship at a public school. My supervisor was out of the room on her lunch break, and I sat alone, as I received a text message from the surgeon to call him. (He was a family friend, so I had his cell phone from other times). When he told me, I was surprisingly calm. I didn't cry. I just felt relieved. I finally had an answer to what I was going through for almost two years. And I knew it was going to get better. That I was going to get better.

One year!

Broadway Lights the Night

I took some time to reflect on the past year and the events of Broadway Lights the Night on July 21. When I was diagnosed with Hodgkin's lymphoma in September 2013, I never imagined it would come full circle at this very special event. I began my journey singing "I Have Confidence" at a church picnic before anyone knew (other than my immediate family) that I had been diagnosed and it was my own special way of telling myself that "I will be okay, I will get through this." Eleven months later, I was honored at Broadway Lights the Night as a survivor and was especially honored to be asked to sing at the event. I chose "A Change in Me" from Broadway's Beauty and the Beast. The lyrics described perfectly what I went through this past year: acceptance of my diagnosis, undergoing tests and treatments, the process of healing, and changing for the better. It was an incredible opportunity for me and the most amazing way to end my journey with lymphoma. 

But actually, the journey will never be over. I will always be fighting to raise awareness and funds for the Leukemia and Lymphoma Society, and other honorable organizations, so that thousands of others diagnosed with cancer will be able to receive assistance and treatments toward a cure, like I did. It's hard work, but it's worth it.

Thank you Leigh, Ashley, Brooke, and the sponsors, especially Krasney Financial, LLC & TD Ameritrade Institutional, for organizing such a wonderful event; your hard work and dedication does not go unnoticed. Thank you Ben, for playing so beautifully for all of us. Thank you to my friends at the LLS who work so hard throughout the year to raise awareness- it has been such a privilege getting to know you and hope we work together for many years. Thank you so much Aaron Lenhart Photography and Matthew Friedman Photography Productions for taking beautiful pictures, so that family and friends who were not able to attend were able to experience it it later and that I can look back and remember my beautiful moments on and off the stage. Thank you to my fellow performers for supporting our cause and for welcoming me to the stage (a novice among all you professionals!) and your support. Thank you to Anita for coaching me (vocally and in life!), Julia, my church family and friends who attended the event, and those who supported from afar.

It was an emotional and heart warming night, one I will always remember, and hope to be part of for many years to come. I hear from people that I am strong and courageous, but to be honest, it is because of my wonderfully supportive team that got me through this year. Frozen meals, movie nights, walking with me at Light the Night, a kind card in the mail, or a text/email/Facebook message to check in on me-- it is because of you that I was able to stay strong this year and push through. "With you, I am more than I am."

Love,
Gillian

Here is the link to my photo album on Facebook:
https://www.facebook.com/media/set/?set=a.1558252291069210.1073741830.1471477149746725&type=1

July

Happy July! (Yes this post is from the beginning of July...I forgot to post it! Whoops!)

I have been very busy, working at my graduate assistantship and as a hostess part time. I've also joined a community band (I play clarinet). I'm loving it, but it is tiring. I am taking a month-long vacation beginning July 22, so I have two weeks left to go until I can finally relax and enjoy the summer. Even throughout my treatments, I continued school and work, so this is one much needed vacation.

I'll be flying to California for the Carmel Bach Festival to meet my boyfriend, then flying to Florida to visit family. One thing I did not consider, was this is the first time I am flying with the port-a-cath in my chest and going through airport security. I have read that it shouldn't set off the metal detector, but that I should tell security about the device just in case. My mom thought of this! (She's the best!)

I am attempting to "train" for a 5K run in the fall for the cancer center where I was treated. Yesterday, at my check-up, my doctor was palpating my stomach and asked "have you been exercising?" That made me laugh! I am trying, but I will have much more time to run when I am on vacation. (Carmel weather is perfect for jogging!)

Update, July 20:

I've been staying motivated with my 5K "training" by using a fun app on my phone. Tomorrow is Broadway Lights the Night, where my interview will be shown on stage. I can't wait!! If you happen to be reading this and still didn't get a ticket, go to www.broadwaylightsthenight.com to learn more!! Your ticket is a donation to the Leukemia and Lymphoma Society and I couldn't be happier to be involved with this organization. Then, the next morning, I am flying to Carmel! wahooooo!!!!

What happened?

The time since I found out I was cancer free and done with treatments two months ago, have been emotional. Reflecting on the past seven months of treatments, I think: 'what happened?'

Where did the time go? People said it would just be a little blip in life, just a few months in the grand scheme of things, and they were right. I can hardly believe I went through 6 cycles/12 sessions of chemotherapy. I worked hard throughout my treatments, trying my best to stay on track with school, stay positive, and keep busy. But now that it's over, I've had a lot more time to reflect on what happened and it can be hard at times.

Yesterday, I helped my best friend sort through her mother's old pictures. She, along with her relatives, have been cleaning out their mother's house since she lost her two-year fight with pancreatic cancer last month. It still hurts me to know that cancer took such a lovely, kind person away from her family and friends. It must be so difficult for them to go through this at a young age. My other best friend's family home caught on fire this week and they lost so much, including their beloved cat. I'm devastated, along with the entire family. My family has experienced hard losses in our lives, yet we remain strong and hopeful.

I care so deeply for my friends and my family. It is heartbreaking to see them in pain. I can't help but wonder if this is how they feel for me. They put so much into helping me get through my treatments. They gave advice, kept me focused on my end goal of finishing treatments, laughed with me, cried with me. I want to give back, I want to help them get through their battles, their "cancers" of life.

My cancer diagnosis didn't break me. It changed me for the better, and I don't mind it at all.

Memorial Day

This Memorial Day, I am not only thankful for all the brave men and women who have served and continue to serve our country, but I am also thinking of the brave men and women who battle with cancer each day. This weekend was the first time I experienced true anger at cancer since being diagnosed with Hodgkin's lymphoma in September.

My dear friend, Kasie, lost her mother to pancreatic cancer last week and this weekend I attended a beautiful memorial service in her honor and memory. As I sat in the congregation, listening to family and friends speak about Nancy and how brave and kind she was her entire life, but even after her terminal diagnosis, I experienced real anger towards this terrible disease, which only seems to become more prevalent as we continue to research and fight for a cure.

I was "blessed" to have Hodgkin's lymphoma. It is very treatable and I had no doubt in my mind that I was going to go through chemotherapy and be okay. I was never mad at cancer, or God, or the universe, or my body, or whatever for giving me cancer. But Saturday afternoon, I was mad. I was mad that cancer took away my best friend's mother. I was mad that Nancy had to go through such a hard battle, when I didn't, and so many others do every day. I read blogs and those little "memes" on Facebook that say no matter what kind of cancer you have, it is still cancer. It still hurts. It still affects you and the people that care about you. Just because you don't look sick, doesn't mean you aren't sick. Just because you don't lose your hair, doesn't mean cancer hasn't affected you in a powerful way. This is all true and I believe it. But for the first time, I was really angry at cancer. At God. At the universe. At bodies for allowing us to get this awful disease, whatever it is and however it happens.

I am grieving for Nancy today. I am grieving for myself and for everyone affected by cancer, hoping there will be a cure in my lifetime. Yet I am thankful for cancer research, for doctors and nurses, for family, for friends, for supporters. Your donation, to the LLS, American Cancer Society, or whichever organization you choose, makes a huge difference in the lives of cancer patients. Thank you.

http://pages.lightthenight.org/nj/Morris14/GVelmer

Doctor Selfie and Graduation

On Monday, I had an appointment with my doctor. Blood work looks good. I'll get another CT scan in July. I'm so grateful for the nurses and doctors everywhere who dedicate their time and efforts to helping people affected with cancer.


And on Tuesday, May 20, I walked at graduation! Master of Arts in Speech Language Pathology :)

Best birthday

Three weeks ago, on my birthday, April 24, I found out I AM CANCER FREE!!!!!

I can't believe three weeks have already gone by! I've been wanting to blog of course, but time has just been flying. The morning of the 24th, I went for a  CT/PET scan, out to breakfast with Tim, got the news that the scan was clean, went for a hike, then out for a very special birthday celebration!

I've just finished all my coursework and finals for the semester (well, with the exception of my entire thesis paper, but I will work on it this summer), directed two singing groups for people with aphasia (which went fabulously well!), and will be walking at graduation on Tuesday, May 20!

Love you all!

Michael

I better blog about this before I forget.

Saturday afternoon, I met up with a friend from college to see The Realistic Joneses on Broadway. The cast is incredible: Tracy Letts, Marisa Tomei, Toni Collette, and Michael C. Hall. If you follow my Facebook page for Team Gillybean, you'll know I posted a while ago that I became a big fan of the TV show Dexter shortly after I started my chemotherapy treatments and would often watch at night to keep my mind off of treatments/side effects/life. It wasn't until I was halfway through the series that I was told that Michael C. Hall (Dexter) had cancer during the filming, and I later found out it was Hodgkin's Lymphoma and that he was an ambassador for Light the Night in 2011. So, I really wanted to see the show so I could see Michael C. Hall perform live.

I don't know if anyone else has gone through an experience like this, but I immediately felt a weird
"connection" with the actor on a different level, knowing that not only did he go through cancer treatments, but he had the same cancer I had. As far as I knew, I had never seen him in any other shows (perhaps bits of Six Feet Under) and knew very little about him. I quickly found out that he survived Hodgkin's Lymphoma, accepted his Golden Globe wearing a cap because he lost his hair during chemotherapy, continued working on Dexter wearing a wig, and became a spokesperson for Light the Night/LLS.

After I finished Dexter the series, I realized he was appearing in NYC and I knew I wanted to see it. I had a crazy idea that I could meet him at the stage door and tell him how appreciative I was that he shared his personal experiences with cancer. In one interview I found online, he said he wanted to share because he thought it might help other people who were also dealing with the disease. I thought, 'why not?! It might be the one chance I'll ever get.'

So, my friend Chris and I met up on sunny Saturday afternoon. I was already very emotional, thinking I might meet Michael C. Hall (can I call him Michael for the rest of this post?), but even themes within the play hit close to home. I laughed, I cried.

My friend knew exactly where the stage door was (I would have never found it without him!), so we waited there with all the other fans. Eventually many more people made their way to the stage door (how do people know where these things are?!).

Michael.....C. Hall (okay, I can't do it without the C. Hall) was the first one out. Chris was nudging me to
get closer to the front and take out my playbill so he could sign, but I was wary of this. I never like being associated with other fans at stage doors, waving camera phones and playbills at the actors. I knew I wanted my talk with him to be special, but I didn't know if it was possible. Some actors are too busy/impatient/arrogant to even take pictures with fans, so I watched him to see if I could figure out what 'kind' of celebrity he was. He was signing autographs and taking pictures with every person (good sign!), but he didn't seem to really be smiling in the pictures (bad sign?), so I thought  'unfriendly/hates taking pictures/no way he will talk to me.'

When he made his way to my side, I waited for him to sign a few autographs, I briefly made eye contact with him, before I made my way to the front. Deep breath. Now was my time to be bold. He was holding a Sharpie pen in his right hand, ready to sign Playbills, but instead of handing him my Playbill, I offered my hand. So, yea, I shook his hand with the Sharpie in it. :-)

I don't remember how I started. I think (I hope...) I said "I admire your work" and very quickly told him "In September, I was diagnosed with Hodgkin's Lymphoma." He said "Oh, you were?" And I continued to tell him how Dexter was my go-to show after chemotherapy, that I didn't know he was also diagnosed with Hodgkin's Lymphoma until halfway through the series and when I found out, watching him on the show had so much more meaning. I told him I did some "Youtube stalking" (exact words, that much I know) and that it was great to watch his interviews and be able to relate to him; that the feelings he was going through are ones that I am going through and it meant everything that he shared his story.

It was mostly quiet all around us. Everyone was looking on and I knew this, but I didn't stop telling him how I felt. Chris told me after the experience, that he could tell that people surrounding us could tell we were having a special moment-- except for one random guy, who pushed his way to the front to take a "selfie" with Michael C. Hall. And that was the only time he ever looked away from me. I know the experience will be blurry to me soon, but the one thing I will not forget are his eyes. He did not look away and was completely engaged in what I was saying. You can tell a lot about a person by the way they look at you and how they listen.

At some point while I was talking, he leaned over the railing, and hugged me. Maybe he said something before that? I think it was a nice hug, but I was so shocked, I can hardly remember it two days later! (I'm shaking as I'm writing this post, by the way. Just thinking and writing about this experience makes me proud, nervous, emotional...shaky).

So clearly, I knew this actor was someone special, so I thought I would be bolder. I asked "can I give you a shirt?" He said yes/of course/yea/sure...one of those words...maybe? So I reached into my purse and took out a Team Gillybean shirt. I brought it along, just in case it ended up being a special experience, which it clearly was. I told him this was my team shirt from Light the Night and we won a contest for best t-shirt design in NJ. I pointed out the cancer ribbons on the jellybeans. I don't know if he responded to that, but I do remember he asked: "Are you Gilly?" I said yes, I'm Gillian. Then I guess I asked him if I could take a picture and I turned around and asked Chris to take the picture. I felt so weird smiling next to him, because I knew he wasn't really smiling in pictures with fans. I almost regretted asking for a picture with him, but ultimately, I'm glad I have it. I knew it was time for him to move on, so as he started making his way to more fans, I thanked him again for sharing his story and he....smiled? Said you're welcome? Said thank you?

It's amazing how I was so concentrated on what I was saying that I barely remember if he said anything back, but I won't forget his eyes.

Thank you Michael C. Hall for taking the time to listen. And thank YOU for reading. Now we all have to be on the lookout for a paparazzi photo of him wearing the Team Gillybean shirt! :-) And, please, please, consider donating if you have read to the end! My birthday is April 24th and I would love nothing more than to receive a donation to the LLS from you! 

With appreciation, 

Gillian

12 of...?

I made it. Yesterday was 12 out of 12. Possibly 16. But hey, I made it! Everyone said six months would fly by and it sure did. On April 24th, I will get a CT/PET scan and find out the results and if I have to continue with 2 more cycles (4 treatments). I know for sure that I will be done by June and that is amazing.

Last night, my biggest fans were over and after a little nap we played Telestrations. So fun!

I have to bring up the hair loss again. Whether you lose your hair completely at the beginning, middle, or end of treatments, or even if you don't, I believe that the hair loss is one of the worst, if not the worst, side effect of chemotherapy (for women and I'm sure men, as well). It has been an interesting, stressful, annoying journey with my hair these past six months. Not a day has gone by that I don't think about my hair: losing it and seeing it all over my clothes and floors, "styling" it so I can cover the thinning areas, and not washing it often, hoping it will prevent it from falling more. If I have to continue treatments, I am uncertain it will stay. Uncertainty has been the worst part of this! But it's hanging on, I'm hanging in. It will all be okay.

April

I have really neglected this blog for almost a month! Sorry about that.

I've been busy with getting my survey thesis sent out-- to directors of choirs for people with aphasia!

This is my poster that will be displayed at the university's research days (April 30th) and at the NJ Speech and Hearing convention (May 1st). Since I've had the poster printed, I've received 8 more results, so that is exciting.

My own "aphasia choirs" are going well. We will be performing at the end of semester party May 12th and May 13th. I've joined a Google plus community with these choirs and it is exciting to be able to collaborate with people living in Australia!

I do still have my hair, although it is getting much thinner. My hairdresser/wig expert suggested using a keratin hair powder, which I've been using to cover up the thinning patches. It really does work. It is just annoying. The hair loss is annoying.

This is from a few weeks ago:

It's like magic. Also, it's magic that I have that much hair towards the end of my treatment. Strong hair roots, I guess. All my unwanted facial hair is still growing. What?!

Crossing fingers that my LAST TREATMENT will be THIS Friday, April 11th!! There is still a chance I have to continue for two more months and if that's the case...I will DEFINITELY be done by JUNE! YEA!

Thinking back to September/October and everyone told me the time would fly by-- well, it sure has. Thanks for taking this trip with me and supporting me the whole way.

Fundraising Ideas #1 and #2

If you're new to this blog, welcome and feel free to say hello!

Last week, I had the privilege of meeting with two New Jersey Light the Night representatives and got some fantastic ideas for fundraising this year. In one month, my team raised over $8,000 for the Leukemia & Lymphoma Society and I hope we will be able to raise just as much--or more--since I am beginning to fund-raise much earlier this year.

I've been posting on Facebook in a new Team Gillybean group I created a couple weeks ago. Here is the link: https://www.facebook.com/pages/Team-Gillybean/1471477149746725?ref=hl

My first ideas for fundraising:

 

Yankee Candle fundraising is new to me, but Team Gillybean/LLS will get 40% of the profit! That is a great deal! I have 10 seller packets, if you would like to help sell IN PERSON, otherwise, please use the link http://tiny.cc/teamgillybeancandles and don't forget to use our 

GROUP NUMBER: 99006317.

In-person fundraising ends April 14th, but it looks like online will continue through July.

Deadlines: Order by March 21st for Easter and April 11th for Mother's Day

 

And for my fundraising idea #3: Would anyone buy Jelly Belly jelly beans for Easter from me? I am thinking of ordering boxes of 10 flavors each, sell for $10 a box. If there is enough interest, I will do it! 

Thanks for your support!

Gillian

To shave or not to shave?

My hair is falling out more and more these days. It is everywhere! It's all over the backs of my shirts and coats, it's on the floor, in the sink, in my food... blech! Surprisingly, though, I still have enough on my head so that the thinning isn't noticeable.

I've read a lot of blogs/websites/articles that say people going through chemotherapy treatments will often cut or shave their hair before it falls out so that they feel "in control." Well, my co-worker said to me last week, "that might be true, but it could also be true that keeping your hair is another way you stay 'in control.'"

So, part of me want to get rid of my hair so I don't have to worry about it (and seeing it) falling out. But mostly, I want to keep it. I have an appointment this week with my wig shop friend and I want to see what she thinks, too.


My friend, Julie, writes a beautiful blog and if you have a moment to check out her thoughts, here is the link: http://juliehappenings.blogspot.com/. She wrote tonight about grief and while I am not strictly talking about grief in my post (or am I? The loss of my hair has surely caused me grief), this quote really stood out to me:

"No one is allowed to tell you what you should feel, ever. Or what you should do next. You get a free pass to make those decisions 100% selfishly." 

I hear opinions from others about what to do with my hair and it's fine, even if I do feel a little insecure or angry (see previous posts). I just have to remember that the decision is up to me and only me. 

But a little voice inside says...help? 

Results

My parents and boyfriend joined me at my appointment before treatment yesterday so we could hear the results of the CT scan from this week.

The results are good, the lymph nodes are still shrinking. We learned that the masses inside the nodes will never completely disappear because of scar tissue. It gets a little confusing here, because while this is good news, it still opens up a chance of having to go through two additional cycles after my next two cycles, when we were all hoping to be done by April. This would mean four additional treatments at the hospital, meaning two extra months. This is not what we were hoping to hear. I had a little cry while I listened to the doctor. 

It seemed odd to hear I could possibly get more treatments if the lymph nodes are still shrinking. But what we really want is to see is that the lymph nodes are unchanged from scan to scan, because it means the drugs have completely destroyed the disease and it can't get any smaller. 

So, if the scan after my next four treatments comes back unchanged from this week's scan, it means there is no more disease that could be killed and I'm done with treatments. If changes are reported, I will need to extend my treatments for two more months. 

It's not what we all wanted to hear, but it's best that my doctor prepared us for what could be! No one goes over 8 cycles (16 treatments), so even if I do have to continue, I will be done by June. 

The first thought that popped into my head was, of course, 'my hair!' I think I have enough to last me for two months, but four?! I guess it's time I go back to the wig shop-- just in case. 

Otherwise I'm feeling pretty good after yesterday's treatment. I felt a little light- headed last night while hanging out with mom, dad, and my friend Joan. I'm hungry this morning, so that's a good thing. Sometimes when I don't have a great appetite or what seems like my taste buds aren't working, I will eat Cheetos for the crunch and the flavor. I had a chocolate donut after dinner last night that tasted so bland! (And I sure do love my chocolate donuts!)

I think I'll find something to eat or just go back to bed for a while. Thanks for your support, blog readers and friends! 

Next treatment: Friday, March 14th. 

Blogging is hard

It is hard to keep up with a blog. I'm currently in an online course, which is about contemporary issues in Speech-Language Pathology (SLP). Everyone in the program has complained about this course, so I've been dreading it for quite some time. I even complain about it every so often because the discussion posts by my fellow classmates are just so dull and repetitive sometimes. However, I just finished my post for this week's lecture, so I feel a sense of accomplishment (although I wish it didn't take me longer than 30 minutes...it usually does). This week's lecture is about marketing for our business/private practice and it's hard work to keep up with promoting for yourself. It's not that I'm promoting myself or this blog, but I do like to update my followers regularly, which just hasn't been happening. I see my blog has been getting quite a bit of views, so I wonder who is reading. 

Everything has been going very well. Classes are good. I finally was able to send in my thesis topic for approval from my university, but I will have to wait a month before I find out if it's approved and I can actually start my study. It will be survey sent out to directors of aphasia choirs around the world. I'll have to present my data in April at my university and in May at the NJ conference for SLPs. I am even interested in starting a new project, involving the general public's knowledge of aphasia.

My graduate assistantship is a way to keep me busy 2-3 days out of the week. My supervisor wants to start writing an article together about voice disorders.

I've been editing a story that my friends and I wrote last summer on a road trip. This story is probably what makes me most "happy," because I'm totally immersed in editing and my mind is completely away from cancer treatments and its effects. I'm hoping one day I can send the story to an editor to be published as a children's picture book. It seems really far-fetched and silly to think I can do something like this, but...."You must do the things you think you cannot do." -Eleanor Roosevelt

Today was the first day I noticed my armpit hair is not growing. I don't mind that at all, but the fact is that my head hair is falling out more than usual and it is really starting to bother me. Everyone gives different advice. Some say to only brush my hair once a day, but I DO NOT WANT TO BRUSH MY HAIR EVER AGAIN! The brush/pick will only pull out more hair and I don't like it. A lot of people, including the nurse practitioner, have said "you won't lose it." And I just want to yell out, "how do YOU know?!?!" I think the best thing you can say to me right now is that "you look great, I can't tell you're losing it, or you will look beautiful no matter what." But saying I won't lose my hair actually makes me angry and anxious. I was very upset with the nurse who said that two months ago, because it just gave me false hope. Even if I don't end up losing it completely, I know that it IS thinning. And if you are one of those people, just know that I still love you very much and appreciate that you're thinking of me. :)

I have only been washing with baby shampoo/hair loss shampoo two times a week, brushing or running my fingers through it only after a shower, and clipping it back with hair clips to avoid  running my hand through it (especially when I'm nervous or doing a mindless task). I think I'll just continue with the clips for as long as I can. It looks terrible, but honestly, I don't care and I don't think anyone else should either. If they knew how I feel every minute of the day because I notice more hairs than usual on my shoulders and clothes and that my fear of being bald creeps into my thoughts every now and then, they would understand and let me keep my new bed head look!

It does make me laugh, though, because mom and I think the reason I've held onto my head hair for so long is the same reason why the unwanted hair on my body has been so stubborn all my life! I've tried professional and home laser treatments, waxing, depilatory creams, shaving.... and they have never worked for me long term. So, I say thank you to whatever weird hairy body genes I have for letting me keep my head hair for long throughout treatments!! :) :)

Next treatment: Friday, February 28th. (9 out of 12)

Port Authority

I thought I would share with you a little information about the port that is used to transfer all the chemotherapy goodies into my body. 

First, here is a picture:

It was hard for me to get a picture that accurately shows what it looks like, but this is close. 

There is a scar above where the needle goes in. There seem to be three little "balls" in triangle form that protrude from under the skin, but it isn't noticeable under my clothes. You can barely make out the catheter that goes up to the round scar on my neck. It looks like a vein. 

Today for the first time, I gently laid my hand over the port and felt it with my palm. I have been very hesitant to touch the area because it feels very strange to me. Sometimes I accidentally brush it with my hand and get startled. 

As I've mentioned before, the nurse sprays a freezing agent on the area (which sometimes burns) before putting in the needle (which does not hurt). 

I'm not actually sure what material the port is made out of, but from the way it looks (those three little balls), I joke that I feel like a robot. :) 

Next treatment (7 out of 12): tomorrow! January 31 around 1pm. 

Chemo brain

Wow I posted about being halfway there yesterday morning and I don't remember a thing. Talk about my first "real" experience with chemo brain!!! LOL :) 

Vocal rest

Shirt by Alyssa Brode Design!

It is day 3 since treatment on Friday (I call Sunday Day 3...) and as usual, this is the day that I have a sore throat and what feels like an empty stomach, although today I did have a good appetite. Also, I have some aches from the Neulasta shot given the day after chemotherapy. Today is a day I just stay in bed or on the couch doing mindless activities. I am reading Life of Pi though, which I'm enjoying. (I just started- no spoilers!) Today is also a day I try not to cry because my larynx feels so high and it hurts when I get choked up, because it literally feels like I'm choking!

But I don't have anything to cry about today. I had a great visit today from Christina and I can't say enough how much I love this girl and treasure our (almost 20 year) friendship. Now that she lives far out in PA, I enjoy every minute I get to spend with her!

My sister went back to college today. I start school on Wednesday, but I have the best schedule ever. Two online half-semester courses, one in-person class half-semester course (done in March) and a full semester PIANO course! I'm so excited! Since I will be finished with my required speech courses, I figured why not pick up a piano elective! I've been wanting to play again and now is my chance. 

Oh also this Tuesday, I am interviewing for my "dream" internship to take place in the fall. I'm going to spend a day observing and interview at the end of the day. 

And two more big things... 1. I am halfway through my treatments!!! 2. I still have my hair!! I never imagined I would hang into it for this long. Crossing fingers it will just thin out and I won't need to wear a wig, but if I do, that's okay too. I've got a great one picked out. 

Thanks for reading and have a great week. 

G

Halfway there!

Yesterday marked the halfway point of my treatments! I have 3 more cycles to go (remember that's 6 rounds of chemotherapy visits). 

And I still have my hair! This part is truly amazing to me. I'm still being very cautious by not brushing or washing often, although the nurse practitioner for two weeks has said I won't lose it (knock on wood). Hair is still growing on my legs, too, which I was also expecting to lose right away. 

Everyone reacts differently to treatment, especially the ABVD treatment I'm receiving, I guess. 

Last night after chemotherapy was rough. My stomach wasn't quite settled. I did not get sick, but didn't have a great appetite. The only "foods" I was in the mood for were cheese doodles, skittles, and oatmeal lovingly made my by mom! 

I slept very well after taking anti-anxiety/nausea medications. Today I was up early and am in the mood for some carbs and protein! Egg on a bagel, maybe. :) My stomach feels much better.

What are your plans for the weekend? I'm thinking I might try to find some motivation to work on leftover homework for the fall semester and respond to emails. I hope my girlfriend Chrissy is feeling better!! She was supposed to come by for a visit, but might have the flu! :( I have to be extra careful around people and friends who are sick.

Whatever you do, I hope it makes you happy and finds you surrounded by good people! 

Next treatments (all around 1pm):

Friday, January 31

Friday, February 14 

Friday, February 28

Thanks for reading!

Love,

Gillian

isn't it ironic?

So after I posted my last blog about being willing to share my experiences with others, but not making any "friends" at chemotherapy, another doctor at the cancer center approached me while I was finishing treatment and said a young woman a few years younger than me was just diagnosed with Hodgkin lymphoma and would be starting the same treatment as I am on. She was just finishing with her bone marrow biopsy and was also interested in talking to me after my treatment. So, considering what I wrote about earlier, I don't know if that's irony, a coincidence, fate?

I went into her examination room after I finished my treatment and she had just finished the biopsy and I couldn't stop thinking about how cancer is hitting so many young people. 

I think I was a little loopy after treatment, but I told her a few things, showed her my port (which she said was much smaller than she expected, so I feel as if I've already helped), and asked if she had questions. Her first question was about the hair loss. I told her that this was my real hair and that I've been really lucky so far, but that it worries me every day. I knows everyone is so different and some people lose their hair much sooner, but that I am still trying to accept life as a person without hair, if or when that happens. It surely is the most difficult part of this process, especially for women.

It wasn't until we exchanged numbers and emails that we found out that we both graduated from the same high school and that she's knows some of my band friends. I texted her later that night with more info and advice, after I had taken another nap.

I didn't think I would meet someone so soon who is my age, with a similar diagnosis, starting the same regimen, and feeling the way I was feeling just a few months ago (and still do feel now). I feel comforted in a way, knowing that I can hopefully help this young woman and let her know that she (we) will be okay and get through this and come out even stronger on the other side.

Chemo small talk

Here I am, sitting for my fifth treatment (which really equals the beginning of my third cycle, but I like counting it out of 12 actual appointments). A woman next to me started to strike up conversation with me about the soap opera playing in the room. We chatted a little bit, she told me where I could find magazines, and just finished with her treatment. She left me with "keep your chin up and take it day by day." 

Friends and family who have gone through chemotherapy or know someone who had, have told me that I would make friends with the people I would be at chemotherapy with, but honestly, I haven't recognized anyone who is here the same time as me (plus the room is usually empty) and don't really know what appropriate "chemotherapy etiquette" is. Is it appropriate to ask where they are in treatments? What kind of cancer they have? How often do they come for treatments? I wouldn't mind if someone asked me those questions, but I am not ready to be the "asker" myself. (I can't think of a better word than "asker"- could be the meds?).

I've been very willing to share my experiences with others, but I'm not sure why it feels different with other patients with cancer. I almost feel like I'm not one of them-  my supervisor at my GA tells me I'm going through this like no one else she's ever seen with cancer. It's a combination of my attitude, general health, and haven't even lost my hair (yet)! I feel lousy the first few days after a treatment, but for the remainder of the week until my next treatment, I feel normal! (With the exception that I've been lazy over winter break- but hey, it is break after all.)

So, this is the beginning of the third cycle and there are six cycles. (AKA fifth treatment out of twelve.) My nurse practitioner said if I haven't lost my hair in clumps, then it won't happen that way. My hair, particularly unwanted facial hair, has always been stubborn, so maybe this is a good sign. 

The results of my CT scan last week are in: Chest looks "considerably improved" and swelling of spleen is "markedly reduced." This is great news! But we continue with the same regimen. 6 cycles, 12 appointments. Almost halfway there. 

And now I will drift off to a happy place...but before I do, I just want to thank everyone who has been following my blog and sending their love and support. Thank you!!! Zzzzz :)

Snow day

Hi everyone. Just a quick post to let you know my fifth treatment has been postponed to Monday due to the snow. 

I had a wonderful holiday with family and friends and I hope you did too. I will post more soon. 

Enjoy the snow!