Monday, May 16, 2011

A Sweet Note, Hope, and Hopes Dashed

ok, so I am not sure how this works, commenting on a blog you posted so many months ago. Will you even know that I did? I had to start reading your blog from the beginning. The very beginning. Because that is where my cancer journey begins. At the beginning. Your humor, honestly, musing, poingnant (I give up on the spelling but not on the use of the word) insights, medical information, tips, heartaches, joys are all so heart felt. You are helping me so much. thank you. Desertpirate


Hello Desertpirate.  Yes, I see all the comments, even when a reader comments on an old post. I am acknowledging you here, because I wasn't sure if you would go back to the post again.

Welcome Sister.  Welcome.  Big hug to you.  Please come again.

I had an appointment with The Good Witch on Friday, my regularly scheduled 3 month check up with CBC (complete blood count).  It was so great to see her, always is, and of course all the staff I am so fond of.  Hello Vonda.  Love you girl.

It was the first time The Good Witch had seen me since I acquired fake boobies, and she thought they looked great, and couldn't believe all my hair!  All my blood counts were excellent - red blood cell, white blood cell, kidneys lookin good, and tumor markers excellent.

We talked about my return to work, and I gave her the good, the bad, and the ugly.  The good is how great it feels to be back among my coworkers and all the lovely guests I wait on in the glorious Napa Valley.  The walkway into the restaurant is so beautiful this time of year, with apricot roses blooming and white wisteria hanging from multiple arbors trimmed with white lights.  I love coming in to work, hearing the specials of the day, and preparing to meet all kinds of characters from all over the world.

The bad and the ugly is how this body of mine is feeling on the job and after work.  Lemme tell you folks, it is brutal.  I push and push and push and by the time I make it out to my car at the end of each shift, I feel like I could bawl my eyes out for the aches and pains, and stiffness in my hands and arms and chest.  Thursday night was the worst, after three consecutive nights of work.  I told The Good Witch how laying in bed that night, I realized I was all curled up in the fetal position, my hands stiff as claws.  I've been downing ibuprofen like M&M's.

I told her I was ready to try something for the neuropathy, cause somethin's gotta give.  She promptly wrote me a prescription for Neurontin, generically known as gabapentin.  It's actually an anti-seizure drug they found had the collateral benefit of helping with peripheral neuropathy.  My Duncle Dody is on it, with great success.  Hello Duncle.

I caught up The Good Witch on all my stuff, including my hysterical-oscopy, and she cringed when I told her about the scene from Psycho with the IV in my neck while awake.  I cried when I told her how traumatized I was, and she understood how after this last year and soldiering through, it caught me by surprise and knocked me down.

She agreed that there are still a lot of misconceptions and misinformation out there, even among medical professionals, regarding lymphedema.  She said I did the right thing by not using that arm.  She asked if I was experiencing any side effects from Tamoxifen, and how often I miss a dose?  I told her I don't miss any, I'm good about that, and so far, I have only occasional nausea.

As she examined flattened Flopsy and Mopsy, she asked if I had any other physical concerns, any bone pain?  We discussed it might be good for me to continue with physical therapy visits here and there.  I asked her "Since I won't be having mammograms, but still have my nipples and breast skin, how will we know if cancer returns there?  How will I know the difference between hard spots that are radiation scar tissue and something new?"

"You won't.  We'll just have to do exams and we'll establish a new standard for how things look and feel.  If we notice anything suspicious or out of the ordinary, we'll check it out."

She was running late with a very booked schedule, but it didn't keep her from giving me more than my fair share of attentive listening, discussion and empathy.

She always makes me feel better.

They called in my new prescription, and refilled Ativan for me.  Since returning to work, I've needed the occasional "Vitamin A" to help with some anxiousness I've been having.  After spending much of the last year at home, I get a little unsettled out of the nest.

After seeing the Good Witch, I met with KarBear, the oncology nurse navigator, so we could talk about my upcoming speech, and do more brainstorming for the writing workshop we are going to give together at the Cancer Center.  We always have a great time, and creatively spark each other.

I got all kinds of needed TLC on Friday, and was very excited and hopeful to start the new medicine.

Fast forward to Sunday morning, when I woke up with an extremely dry mouth, and a very swollen tongue and some blistering.  Oh dear.  It took me a minute to realize, oh no, is this a reaction to the new med?  Husband said I shouldn't take any more, and I called the pharmacist.

Pharmacist asked lots of questions, concurred that it was an allergic reaction, and seemed to be urging me to go to the ER.  I reassured her I was not having trouble breathing or swallowing.  She said I should be very diligent to monitor myself over the next 24 hours, and do not hesitate to go to the ER if anything changed, and be sure to check in with my doctor, and of course, discontinue the medication.

Aw geez.

I emailed The Good Witch, giving her the update, and she said "oh my" and agreed with the pharmacist, additionally suggesting I take some Benedryl to help with the "allergic" reaction.  She suggested we try Lyrica next, and said she'd call in a new prescription on Monday.

Sunday evening I still had a swollen tongue, and my skin felt very creepy crawly, like I was going to get hives.  I did take the Benedryl, which knocked me out, and took more again today, which knocked me out again.  Tongue is still sore, but much better, although extreme dry mouth, like during chemo, continues.

I didn't go pick up the Lyrica.  I don't even want to think about trying it until my mouth feels better.

Sheesh.  I guess my reign as Queen of the Glitch ain't over.

3 comments:

Anonymous said...

Wow....what an update. However, you are not Queen of the Glitch! You are Queen of the Gift! The gift of being able to put into words and tell it like it is in the trenches. You are helping many people through this! Bless You again & again! Keep the Faith....
Prayers for you getting this straightened out. - Faith & Hope

Anonymous said...

I cannot wait until the details are set regarding the writing/journaling class are finalized. I promise to be one of the first to sign up. I keep hearing from different sources how helpful it is in coming to a place of peace in dealing with all the stuff we go through. Or at least how to seize moments of peace. I agree with the other poster, you ARE the Queen of the Gift. You are a powerful writer. Ever think about publishing?
Loves,
Desertpirate

Anonymous said...

I hate it that you are having to deal with drug side effects now on top of all that has gone on before.

There's not a thing that I can say that would be helpful at all, but I am still here . . . holding you up when you have a really rotten day. Still praying for your healing.

Hugs,
Pat

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