The Road Ahead

roadahead

 

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

 

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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

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.