Surviving Cancer

I have one friend who is facing a new diagnosis of lung cancer while another friend is nearing the end of her fight with ovarian cancer. It seems to be all around me. And I’m struggling with survivor’s guilt.

Wikipedia defines survivor’s guilt as “a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not.” Typically this refers to survivors of combat, terrorist attack, and natural disasters; and it can be a symptom of Post Traumatic Stress Disorder (PTSD). But it is also a common feeling that cancer survivors face.

While I consider myself a fighter and not a survivor per se, I, too, am struggling with this issue. Since I have been re-diagnosed, I’ve had three friends pass away from their cancer battles. One was five years younger than me. I continue to see her mother regularly, and feel guilty every time I do. I was diagnosed with cancer the first time before her, had it come back, and yet still outlived her.

Fortunately I’m not alone in this struggle. A simple Google search for “cancer patients and survivor’s guilt” brings up a number of articles on the topic, and how it can be mitigated. In fact, when I brought it up with my social worker, she reassured me that it is a very common feeling. She also encouraged me to do/remember several things to ease the guilt:

  • Acknowledge the feeling by writing it down; but then write down why feeling is unrealistic and why those feelings don’t help those grieving the loss of their loved ones.
  • Think of those who would be devastated by my loss.
  • My survival is a gift. Share it with my loved ones.
  • Live in honor of those whose lives were taken by cancer. I deserve every moment of my life, just as they did.

As I mentioned in my last post, my social worker also gave me a list of suggestions of things to do with my family in the time I have left. Some ideas include:

  • Schedule a day long photo shoot in our favorite spots around town or any other family favorite destination.  These photos would be used in a photobook/scrapbook that could be a beautiful dedication to my family. Include letters to each other in the book, nick names, funny stories, etc.
  • Ask each family member and friend to choose an activity or fun place they want to go with me alone and set dates for these things.
  • Write down all of the things I feel like I want/need to see in the world.
  • Think of my ultimate family vacation (there are organizations willing to cover some or all of the costs associated with this).
  • Record lots of videos — pictures are amazing, but hearing voices is so incredibly soothing when you are missing someone.
  • Make a quilt/scrap blanket together as a family.  It will be memories made while making it and then it will keep everyone warm physically and emotionally for years to come.
  • Make a Family Recipe Book. Cook family dishes together, or find new dishes and cook them as a family. Take pictures and write-up the recipes. It can be passed on to my son’s wife someday.

These are all amazing suggestions, and I plan on carrying out most — if not all — of them. It will keep me busy and focused on my family and dear friends, which is what makes me happiest. Will I still feel survivor’s guilt? Probably. I know myself and my depression, and this is likely something my depression would eat up like candy. But I’ll continue to fight against it as I make memories with my family and friends.

So tell me, if you had the opportunity to spend time with me, what would you want to do?

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Good Day, Sunshine

I got the results of my biopsy today. For those of you just tuning in, I have been having some pain in my groin and it was determined that the lymph nodes there were swollen and enlarged. It appeared that the cancer had spread to them; however to make sure, I got a biopsy of the nodes.

They’re NOT cancerous!

Can you believe it?! Everyone was happily surprised (cue the above song in my head). It had really seemed as though the biopsy was a formality and that they must be cancerous, but they’re not!

So what does this mean?

A few things:

  1. The cancer has not spread. I already have the mass in my pancreas and significant lymph node involvement. These have responded dramatically to the chemotherapy. If the lymph nodes in my groin had turned out to be cancer, then the chemo drug I’m on wouldn’t have worked as well as we thought, and we would have to worry about continuous spreading of the disease.
  2. I don’t have to alter or add anything to my chemotherapy regimen. Since they’re not cancer, it means that my chemo drug IS working as well as we want it to, and I don’t need to change a thing about my routine. Adding another chemotherapy drug could have meant additional side effects like losing my hair, lower blood counts, more pain, etc.
  3. I get to stay in my chemo routine. I mentioned this above, but to explain in more detail, we chemo patients learn our routines once we get into a chemo regimen. We learn what days are good, what days are bad, and what side effects to expect. If a new chemo drug is added, it’s like starting over again. We have new good and bad days to adjust to and new side effects to learn and to navigate. Being able to stay in my current routine is much easier on me.
  4. Going forward, I will continue the Gemzar (chemo drug) schedule — three weeks on, one week off. Scans (PET and CT) will be every three months. This will continue until a) the Gemzar stops working, or b) the Gemzar becomes toxic to my body. The end date of this chemo cannot be predicted; we just watch and see what happens.
  5. As far as what caused the lymph nodes to be painful and swollen, we don’t know. And quite honestly, we don’t care because it’s NOT CANCER.

But God is faithful, and he will not let you be tempted beyond what you can bear, but along with the temptation he will also make the way out so that you may be able to endure it.

1 Corinthians 10:13 (NWT)

I am so grateful that God knows our limitations and provides us with what we need to endure different trials. I’m so thankful for this news. It feels like someone just added more time to my timer — took one big spin backwards on the dial.

This is the most optimistic I’ve felt since my re-diagnosis. It’s the first time I’ve breathed a sigh of relief, that I’ve thought of my expiration date as possibly being years away instead of months away. Researching and planning our big trip in June fills me with excitement instead of trepidation.

Today is a Good Day, Sunshine.

xoxo

The Girls are Coming Back

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Let me begin by talking about this girl — Irma. We are in the path. We are evacuating to Tennessee, renting a house in the mountains. We were in Matthew’s path last year and were evacuated for about a full week. Matthew was a category 2. Irma is projected to be a 3. We saw damage with Matthew, and we expect damage with Irma, too.  Last year, I wasn’t as concerned … our home wasn’t near water or trees, and it was a townhouse. This time around, it’s different. We bought a home this April — a single family home with lots of trees and marsh across the street. I’m trying not to freak out.

Irma is not one of the “girls” I am referring to in the post title. But since many of my readers know my general location, I thought I’d go ahead and let y’all know that we are planning to evacuate and where. If you’re reading this and thinking, “Tennessee! That seems awfully far,” Tennessee was as close as we could get. If you consider that pretty much the entire state of Florida must evacuate, plus coastal Georgia, and coastal South Carolina, it seems easier to comprehend

Anyway, to explain the “girls” that are coming back …

I am getting my DIEP Flap surgery on November 28th! 

That’s right! I’m getting the breast reconstruction that I have really always wanted to get! Initially, we went with the simpler implant reconstruction because the recovery is easier, but I was very unhappy with the results. Once the left implant had been removed, I decided to pursue the DIEP flap procedure.

We all know that health insurance can be a blessing and a curse, and this case was no different. I qualified for a Medicaid program which meant low copays and very little out-of-pocket. It also meant that surgeons who perform this procedure don’t work with Medicaid (surgery cost far outweighs Medicaid’s payout). In the meantime, my husband received a significant raise which bumped us out of the income qualifications for Medicaid. Long story short, I’m now on a BCBS plan that will cover the surgery (but means more out-of-pocket cost for us).

With the new insurance in place, I immediately called the surgical practice and got in on Tuesday. Fortunately, it looks like I am an excellent candidate! The earliest availability is the date of my surgery. I am over the moon.

Some of you may be wondering what the DIEP Flap procedure is. I’ll explain as much as I understand. Don’t ask me what DIEP stands for, though, because I can’t remember. Basically, they take the fat and tissue from my tummy and use it to form new breast mounds. It is at least a two-part surgery. The first one is the major one. The second (and any others) are to fine-tune and smooth out my breasts and stomach.

Some things you might be thinking:

  • Hey, I’ve got some fat I could donate! Thank you, but that’s not the way it works. Plus, I have plenty of my own.
  • Does this mean you get a tummy tuck? Yeah, pretty much!
  • How long will you be in the hospital? Four nights
  • Why is this surgery better? Um, see points one and two. Plus they will look more natural and be closer to my original size. I may even regain some feeling that I lost with the initial reconstruction.
  • What is recovery like? I’ll be up walking the day after surgery. I will probably be a little stooped over at first. The most difficult thing will probably be “T-Rex” arms. I will not be allowed to reach for anything or lift my arms higher than 45 degrees for a while. I will have drains, but only about a week up top and three weeks in my tummy. I can drive after all the drains are out.

Feel free to ask me any other questions about it! Also if you have had similar surgeries, please give me any tips and suggestions you might have.

In the coming months, I will be trying to strengthen my core, lose some weight, and get into an exercise routine. These things will help with my recovery and my post-surgical appearance. With the “forced vacation” evacuation, I hope to work on a healthier routine.

I am happy to report that 40 is treating me well so far. I was able to add some medications to my antidepressant regimen, and the difference is fairly dramatic. I have more energy and less anxiety. Everyday activities and chores no longer feel like mountainous treks; rather I find myself regularly checking off my to-dos with a sense of accomplishment and satisfaction. It is a huge relief to me to be feeling more like myself.

Work is fun and exciting. My self-esteem is still suffering, but with the knowledge of my surgery coming up, I am feeling a little less self-conscious. And also more motivated to get some exercise in and to eat better.

Thanks so much for sticking with me and continuing to read. I’m sure I’ll have more to write about soon!

xoxo

The Road Ahead

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I apologize for the absence. Honestly, I’ve been feeling a little down lately, and I haven’t known how to properly recognize/express my feelings until recently. Let me back up …

During my recovery through May and June my Oncologist informed me that he wanted me to start on an oral chemo medication in conjunction with my radiation. Needless to say that was disappointing to me. Actually, it was more than disappointing. I was pretty upset and depressed about it. I won’t bore you with the details of the reasoning behind this, but it’s a pretty much a “better safe than sorry” precaution.

I began feeling like myself again by the middle of June (as far as surgery), and we even went away at the end of the month (to Atlanta to see my favorite band, The Cure.) However, now that I was off pain meds, my arthritis pain has consistently been getting worse. For those of you living with chronic pain, I know you understand how exhausting that is.

Chronic pain hasn’t helped the depression. But I’m able to take some pain meds as needed, and I am getting ready to start a non-drug therapy to help block pain signals. Add to that the start of Chemo and Radiation, and, well, I am one exhausted chickie!

I am happy to report, though, that I am mostly tolerating the chemo well (as in the past). I’m experiencing some nausea/food aversion and it disrupts my sleep, but things could be much worse. Radiation is purely a nuisance to me at this point, for which I’m grateful. I need a little bit of time to readjust my self-expectations and schedule before the pain/irritation sets in.

Once again, I am struggling with whether my lack of interest/motivation is from chemo/radiation fatigue or depression or both. Tonight I plan on an early bedtime with a little extra Trazadone to help me stay asleep longer (I typically only take one because I sleep really late when I take two; but at this point I’m feeling like a walking dishrag, so I probably need to catch up a bit).

My plastic surgeon told me/warned me that all I’d feel like doing in the first weeks after surgery was watching TV/Netflix and shopping online. Much to hubs’ chagrin, I’m still shopping online. Mostly filling my carts and abandoning them, but occasionally I take on all the way through, a brief wave of excitement washes over me upon arrival, and then I’m once again paralyzed by both mental an physical fatigue.

I do feel confident, though, that my mood is nothing that can’t be fixed by some sleep, some prayer, and some realistic exceptions of myself. In the meantime, I remind myself that I could be having more severe side effects; and all of this is better than being dead.

Over the next few weeks, I will try to update more regularly. In the meantime, I would love your tips on getting out of this mood!

xo

 

Last Chemo

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Yesterday was my last chemo. We celebrated big time. With boob cupcakes and Wonder Woman attire. With my Batman by my side. And some of the most important people in my life in my corner.

I was greeted at the front desk with a special delivery from my kindred spirit, J. Her card made me choke up. Once I got hooked up, I handed out gifts to my amazing chemo nurses. They kept saying that I didn’t need to give them anything. My response, voice cracking, “You kinda helped save my life, so yeah I do.” I didn’t realize how emotional I would feel.

Once I finished up, the family and friends arrived so we could celebrate properly — with cupcakes decorated like boobs and Prosecco. We posed with the cupcakes and laughed with my nursing staff and my Oncology Nurse Practitioner. My Oncologist stopped in (he loved my Wonder Woman costume).

It was a great day. But it was more emotional than I thought it would be. While I will still see my social worker and Oncologist and Oncology Nurse Practitioner pretty regularly, I won’t see the amazing chemo nursing staff as much. These women took the scariest time in my life and made me feel safe. They made me laugh. They tolerated me as I rambled on weekly in a steroid-induced frenzy. They listened to my stories, and patiently answered my random questions. They made me feel brave by asking me to talk to a new chemo patient. They complimented my makeup and fashion hits (and probably some misses too). Several times they stayed and let me talk or joke with them when I’m sure they were ready to go home. They were educators, caregivers, therapists, and they became my friends. I will miss them. I am already coming up with “reasons” to visit.

Chemo has been an interesting road. The last five months have been filled with fatigue, random food cravings and aversions, some of the worst heartburn and indigestion I’ve ever faced, sleepless nights, steroid-mania, and increasing forgetfulness and inability to pay attention. But overall, I came through it mostly unscathed (shingles and cellulitis aside). My youngish and mostly healthy body withstood chemo with tremendous strength. I’m proud of this chubby body that absorbed this medicine without vomiting, high fevers, or illnesses.

I look forward to a few weeks of feeling less fatigued. But I am ready for the next phase of this journey. I hope to get my surgery scheduled next week when I meet with my surgeons. I’d like for it to be scheduled for the last week of this month, but we will see. In the meantime, I hope to enjoy the next few weeks being chemo free!

Thanks for reading, and being patient as the frequency of my posts has slowed. I appreciate all the comments, likes, and follows. Thank you for sharing this journey with me.

xo

 

Ugly Truths

Note: I wrote this last night. I am feeling much better today, but I think it is important to share the post anyway. To share that my attitude isn’t always Sunshine and Rainbows. That I have bad days. Plus, I’d love some feedback on what you do when you feel down like this.

Hi there readers. Guess what! Tuesday marks my half-way point through this second phase of treatment. Thank you, my sister, for helping me realize that! And, I’m sorry that I wasn’t up for talking. I was hungry, and this blog post will explain a little more.

I am glad to be halfway through this phase. But you know what? I’m pretty much over this whole cancer treatment thing. I’m tired. I am experiencing aches and pains and stomach issues and fatigue. It seems that I cannot get physically comfortable, and I’m having more trouble getting distracted with the things that have intrigued me thus far.

If cancer was a person, I would want want to beat the crap out of it. It makes me angry. It’s like this really annoying person who I tried to be nice to, and it just took advantage of me and my good nature. It needs to go. To get out of my life. To never contact me again. I need to change my number. Move, maybe. Get rid of this stalker.

Up until now, I’ve found things that make me happy. Planning my day-to-day schedule. Using essential oils. Always having my nails done with Jamberry. Blogging. Doing my makeup. Now these things aren’t bringing me as much joy as they were. Why? I’m not entirely sure. I assume that the fatigue is a big part of it. Increasingly, lately, the idea of spending the day in bed is more appealing than putting forth the effort to shower and put on my make-up and “look good.” As I plan my week, I see the how the need to adjust for my fatigue level lessens my productivity. Blogging about positive things gets harder by the day because I’m feeling less positive and less productive. And my concentration is poor, so organizing my thoughts and ideas to actually execute a project becomes increasingly difficult.

It’s not to say that I have no positive thinking. Overall, I am so grateful to my God that He has helped me endure this experience. My prognosis is good, and I am handling Chemo (for the most part) like a champ, so I don’t really have much about which to complain. My family and friends are as supportive as they were at my initial diagnosis, if not more so.

It’s just that cancer sucks. It really does. Treatment is rough. I have it far better than many, but I’m over it. And it does get harder, the more it builds up in one’s system. Discomfort increases and fatigue increases. Right now I have a constantly bloody nose because the Chemo aggravates the irritation in my sinus and nose from the dry heat needed this time of year.

Ugh! I have such a bad attitude, which annoys me. I know I will get over it. And I’ve allowed myself this weekend to acknowledge and feel these feelings. My nearest and dearest have allowed me to vent … nodding in sympathy and laughing in solidarity. This already makes me feel a bit better. And I know that I have a full week ahead that will make me feel productive and accomplished.

Tell me, readers, what do you find helps when you experience times like these? Not specific to cancer, but to feeling in a rut or like nothing is bringing you the joy it once was? Any words of encouragement, empathy, or advice is greatly appreciated.

xoxo

Road Trip

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Road Trip Stop at South of the Border

We went on a road trip this past weekend — my parents and the three of us. It was a sad occasion. A dear friend to all of us lost his brief battle with an aggressive form of Leukemia. He was a doting uncle to my husband and me and a beloved PapaX to our son.

I will always remember his smile and his hand shakes. His hats and his mustache. But mostly the affection and patience he had with the kid. He would sit side by side with him and teach him how to play solitaire. He was a good egg.

He and his wife served as an example to me of faith and endurance. Strength through physical and emotional pain. Reliance on our Heavenly Father, above all else. She survives him — with most children scattered up and down the east coast — and one of them living close by. I know, from watching her cope with emotional loss, that she will rely on the God of hope until she sees her husband again. But she’s in my heart and on my mind these days.

This weekend is the first time I’ve traveled since my diagnosis. I felt a bit numb the whole weekend — almost like I was watching myself go through all the motions. The emotions weren’t there. Because I don’t think I was ready to process them. This happens to me sometimes … my head comprehends the facts before my heart can accept them.

I was emotional this morning, subconsciously allowing my heart to accept that I’ve lost a close friend. To the same overall disease I am currently fighting. Different ages and different types, I know, but it saddens me the difference in our prognoses.

Until we see him again, we will laugh over our happy memories and our plans for when we are all reunited.

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We took our time with our little road trip and took advantage of stopping in at a couple stores we don’t have near us at home. Of course, we needed to stop at Toys R Us for the kid. How in the world do so many toys exist?! And I needed to stop at Michael’s to stock up on stickers for my latest obsession: my Erin Condren planner.

Did you know that there is an event in May just for planners? It’s like this weird, worldwide club! Instagram has hash tags for it. People take pictures of their planners and share it with the “Planner Community.”

I had to go to Michael’s to pick up some stickers. Then I trolled Etsy for hours on the way home until I finally had a sufficient yet not excessive shopping cart total (this has really taken me more like 10 days … stickers get expensive, and once you start, it’s easy to think you need ALL of them. Including the poop ones. I am proud to say that I spend under $50. And I didn’t get the poop ones).

Today I realized why this is so important to me. It is something I am in control of. On a good day, we don’t have much control over our lives. When you throw cancer and chemotherapy into the mix, there is significantly less. But I can plan my days, and I can make it look pretty.

We stopped at the (in)famous South of the Border on the way home (yes, I took that picture up there). As I took the picture, I felt a bit of Wanderlust. The last time we were there was on the first trip my husband I took after we were married. We were set to fly to Florida from Pennsylvania to celebrate our anniversary at the end of September 2001. And then 9/11 happened, so we set off on our first (of many) road trip.

It makes me think of one of my bucket list items — to drive across country. I’ve wanted to do that ever since I read Meet the Austins by Madeleine L’Engle when I was a teenager. Hubs and I want to take the kid when he’s a bit older and will appreciate it. I’ve always had a bit of Wander in me, and I hope to take that great adventure some day.

Thank you, readers, for reading each post. I look forward to your comments below. And tell me, please, what’s on your Bucket List? An epic road trip? An exotic vacation? Let me know in the comments.

xoxo