First Day of Chemo, Leggy Style

We went over the results of the scans this morning. The good news is there is no other organ involvement; however there is significant lymph node involvement, especially in the area around my lungs. The course of action remains the same: Gemzar treatment. I’ll go through about two rounds of treatment and then have scans to check the progress, if any. The primary goal is to get me as pain-free as possible and to slow the progression.

When we did “chemo teaching” last week, I mentioned to my social worker and nurse Oncologist that the name Gemzar makes me think that the chemo is like royal treatment and I’d sweat glitter or dazzle and sparkle or something. I may have suggested that I might dress up in some sparkly get up. However being as hopped up as I am right now I failed to follow through on my glitter outfit.

Alas, my social worker did NOT forget. She brought me a tiara, rings, a scepter and decorated my chemo bag with gems. Oh and a princess mask. Fortunately we got pictures!

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Overall, the chemo went well. No nausea. No extreme fatigue. So far this afternoon I’m holding together pretty well. We will see how I feel tomorrow.

Yesterday’s post was a long time coming together. I spent the entire day trying to write it, but I kept falling asleep. At one point I woke up to “fffffffffffffffffffffffffffffffff” on the screen. But I am trying to write as I feel motivated. Even if it takes me all day.

Love to you all. If there are any questions you have about cancer, side effects, prognosis, symptoms, or anything else, please ask me. I love to be given a task. You can ask me in the comments here.

Love you all!

xoxo

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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

 

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

About Motherhood

The kid and I stopped to see a friend acquaintance who just had a baby over the weekend. She’s younger than me and this is her second child (her first is four). There was another, much closer friend, visiting already when we arrived. I felt this friend’s judgement as soon as I walked in.

“You an only child?” She asked.

Confused, I replied, “He is.”

“Didn’t break the cycle, Mom?”

I replied, “Oh no, I have a sister, but he’s an only child.”

I’ve heard this response before. The judgement-non-judgement of those who hold disdain for parents of only children. Even when the judger has no children. For a long time, there was part of me that felt ashamed that I haven’t had another child. But then I look back at the last nine years, and I remember the following:

  • Pregnancy was full of anxiety for me. Having been born with a birth defect myself, I spent the majority of my baby-growing wondering if the baby would be healthy.
  • My birth experience was literally a nightmare. I am not exaggerating. Let’s just say the epidural wore off just in time for the c-section.
  • I have chronic depression, so feelings of inadequacy are pretty much standard. Add that I knew nothing about boys … I’ve spent much of motherhood asking my husband, “Is this normal?” Not a huge confidence-builder.
  • We miscarried. All our excitement for a second child was shattered when, at my first check-up, things didn’t look good. I had to wait another two weeks (to analyze blood work, allow for changes in the ultrasound) to learn that I was carrying a dead embryo inside me. And I didn’t miscarry naturally. I had to have a D&C.
  • When we decided to try again, I chose to go off all my meds. No more sleeping pills or antidepressants. I stopped drinking alcohol. After about two months of this, with a three-year-old testing his boundaries, I came to the realization that I would rather be a good mom to one child than a fractured, damaged, and anxiety-ridden mom of two.

When I reflect on the above, my shame melts away. I just take a deep breath, smile, and try to ignore the judgment.  But while I feel no shame, I do feel judged. And I don’t like to feel judged. So I guess I was feeling a little down this evening. Until this:

The Kid: (as I’m taking out my contacts and getting ready for bed). Mommy, are you coming in my room tonight (to read and snuggle)?

Me: Yes.

The Kid: Yes!!! (then singing, intentionally with the speech impediment) I wuv my Mommy. I wuv my Mommy! (over and over again).

And I realized that I am right where I should be, doing exactly what I should be — and can be — doing.  So, in honor of last night’s post, as Taylor Swift so appropriately puts it, “Haters gonna hate hate hate … I’m gonna shake it off shake it off …”

xo

PSA (Public Service Announcement), Lively Style

I’m not sure when I started paying attention to the medication guides that come with my prescriptions. Part of me is afraid it will cause psycho-sematic symptoms, that I will consult Dr. Google or Dr. WebMD and become convinced that I am about to die (seriously, I can’t even watch Dr. Oz anymore because he had me convinced I had heart disease).

But for some reason, I do. Maybe it started when I had my first allergic reaction to an antibiotic. I was a teenager and my lips swelled up to twice their size. Turns out I am allergic to sulfa drugs. Man, I thought it was hilarious (I had Angelina Jolie lips) until my doctor told me that I was fortunate it didn’t lead to anaphylactic shock.

Fast forward a few years to discovering I have an autoimmune disease and taking medication that requires me to get regular bloodwork to ensure that my liver keeps functioning. And that I cope with chronic depression, which has a whole raft of prescription drugs that could have side effects. Needless to say, I have had to learn to self-advocate.

So, for a long time now, I’ve made a habit of pulling out those medication guides and poring over them, so that I am aware of any potential side effects and whether or not they’re serious. Extreme, you say? Possibly. But doing that has saved my life twice. And no, I’m not being dramatic (though I do have a flair for it 😉 ).

Humira was one of the early drugs prescribed to me when I was initially diagnosed with Psoriatic Arthritis. Other than being terrified of the injection, I had no adverse reaction (Terrified, meaning running away from my husband, and eventually needing my father to hold me down so hubs could inject it).  Soon, I became pregnant and experienced complete remission (another reason to have babies!) for a good five years.

One of the things that sucks about Psoriatic Arthritis (and I’m sure other autoimmune diseases) is that when remission ends, it ENDS. With a vengeance, my symptoms returned, along with new ones. But since I had (sort of) successfully been on Humira before, and it is now much easier to inject (with one of those auto-inject pens), my Rheumatologist put me back on it fairly quickly.

I unfolded the medication guide that accompanied my prescription and read through it, until I was familiar with the potential side effects. Therefore, I wasn’t alarmed when I had an injection site reaction, but I was concerned that it appeared a few days later as a large, itchy welt. It was around my fourth injection that I experienced persistent vomiting (not normal) and facial swelling (definitely not normal). I knew, from reading the medication guide, that I was having an allergic reaction and that I needed to seek medical attention immediately.

Fortunately, this only resulted in a brief trip to the emergency room with some IV Benadryl. Needless to say, I stopped taking it, and I called my doctor. When I went in for a visit, he was really shocked. With over 15 years’ experience in Rheumatology, he had never seen this reaction. Evidently, an allergic response happens in less than 1% of patients on Humira. I probably wouldn’t have connected it unless I had read the medication guide.

My more recent mishap with an adverse drug reaction happened a week ago today, and it was one of the scariest things I have ever experienced. Two weeks ago, my Rheumatologist switched me off Paxil and onto Cymbalta, performing what is known as a “hot switch.” In my experience with antidepressants, my doctors have always tapered me down off one medication and then ramped me up to the the new medication. I inquired about this, but my Rheumatologist assured me that I did not need to do this; I could just stop taking Paxil and replace it with Cymbalta.

He explained that the medications were identical, and that Cymbalta would help me with my back pain. I wanted desperately to be rid of the back pain. I wanted to trust my doctor. I have no medical background other than what I have experienced and researched. But I felt like I was betraying my Psychiatrist, who prescribed the Paxil to me.

This time, I didn’t read the medication guide right away. I had some feelings of irritability, but at the same time, I wasn’t quite as exhausted as I had been. But after noticing an unusual symptom, I read the medication guide. It turns out that I had already experienced the sweating, agitation, and increased heart rate associated with Serotonin Syndrome. In and of itself, this wasn’t so serious. But I was still cautious.

Last Tuesday morning, I woke up in an incredible mood. I was elated, but for no reason. At my therapy appointment, my therapist said I looked great, and that I was “glowing.” Unlike my typical appointments, I had no concerns, no issues with self-esteem. I literally felt great! As the day went on, I was thrilled at how much I was accomplishing.

As I was driving to pick my son up from school, I got unreasonably agitated at another driver. I became jittery and easily irrated. I texted my husband, and said, “My level of irritability is increasing and I’m a little bit frightened by it.” As the afternoon went on, I expressed concern that I should have been weaned off the Paxil.I left a message with my Psychiatrist.

By evening, I was so edgy and wired that I had a Manhattan (up, not on the rocks … haha I crack myself up) to calm down. Typically if I have a drink, I mellow out and get sleepy. But this time, I continued to have more energy. My heart was racing. My husband said something I didn’t like, and I was out the door like a shot. Walking around my neighborhood (something I haven’t been able to do because of back pain in I don’t know how long), I felt invincible. Normally cautious, even frightened by being alone on a dark street, I felt courageous, elated … manic? When I got the idea to do something entirely wreckless and which would lead to at least injury if not death, I thought of my son. I walked back home, and I told my husband he needed to take me to the hospital.

I sobbed at the ER. I was scared, and nothing prepared me for what I had to do to get my meds right. I spent two nights in the Psychiatric floor of our local hospital. My diagnosis: Paxil discontinuation syndrome and a manic episode caused by the stimulant Cymbalta. Both the Psychiatrist on staff and my own Psychiatrist agreed that I should never have been prescribed with a “hot switch.”

Clearly, this is a hard thing for me to open up about, and I could just as easily keep my mouth shut. Being on the psychiatric floor was one of the most terrifying experiences of my life. But I was there because I knew things weren’t right and I didn’t want to harm my son, my husband, or myself.

I realized that if I hadn’t self-advocated, if I hadn’t read those medication guides, I may not be here. Granted, both of my experiences involved very rare reactions. While withdrawal syndrome is fairly common, the manic episode is very rare. (Again, my Pyschiatrist told me he had never seen that reaction in Cymbalta. He said that I taught him something.)

So I want to let my weird — but very real — reactions serve as a public service announcement. Self-advocate. Read about your medications. Trust your instincts. Research your symptoms and diagnoses. Have a good support system.

Don’t be afraid to speak up. My husband and my parents are fabulously supportive of me, and they trust my concerns about my health. While my husband tends to be hesitant to go to the ER, my behavior in this most recent situation scared him so badly, he knew that he needed to listen to me and take me.

Remember that doctors, while really smart and really awesome, don’t know everything. You can express your concerns and doubts. In fact, you should. And next time your doctor prescribes medication, read that medication guide. I promise it won’t make you a hypchondriac, but it might save your life.