Right around my 30th birthday (January 5th) just after the holidays, I received a letter from John stating that he had actually received the letter days before Christmas but was scared to open it, as he feared (rightfully, I could add) that it would contain bad news. I’ll admit, this was endearing and I felt myself softening to his words. I started to believe that he had changed in his retired years (he is 69, afterall), and that perhaps the most evil action a person can take is deprivation of love and attention—something I was very familiar with from him. Two wrongs don’t make a right and, perhaps, it is my job to teach him an appropriate response to conflict (yes, yes I know--how completely narcissistic of me). He further stated that he is delighted that we are back in touch and that there “is hope” for a reunion. I’m not carved from Stonehenge and was therefore touched by his rare ability to emote--touched, but cautious and very, very leery. He told me that he would call me soon to discuss a visit. And, friends, by “visit” I’m thinking he means “lengthy phone discussion” since I’m not down with the face-to-face just yet after 10+ years of non-communication and a previous 10+ years of very strained contact (strained = traumatic, and I am talking in terms of lighthearted euphemisms, folks) during childhood. Give me a year of regular, healthy interaction, ask me again, and perhaps my tone will have changed with regard to a standard meeting but not just yet. Still, I accepted the letter and mentally prepared myself for the impending phone call. I then took the envelope in which the letter arrived, turned it upside down, and waited for the nonexistent check to flutter out. It never did. I was partially nonplussed since he owns three homes (one along a river embankment), two horses, prize-winning showdogs, and several luxury cars, but also completely unimpressed by his lack of generosity given his avaricious tendencies with money. Gifts from John, just as with any official loans (such as those for grad school which, despite desperate urging from friends years ago, I would never have acceptd had I even been granted the opportunity) come with serious, iron-clad strings attached.
Instead, I opted for the easy way out, explaining that I am in no physical condition to travel. He said he understood and the conversation quickly veered toward discussions of blood counts, familial cancer history (none), and other harmless, somewhat mutual topics given my condition and profession and the fact that he is a retired pediatric cardiologist. I was glad to engage him in non-sentimental matters seeing as I didn’t find him personally concerned with my health issues whatsoever and yet, as a doctor, we could easily connect on this benign (pun intended)--albeit morbid--level. I absolutely do not deny how weird that is. Finally, as I was silently musing to myself that this a conversation worthy of psychiatric examination based on this dynamic duo’s curious social behavior and emotional history, the worst came forth.
“So what’s next for you after you are deemed cancer free with the completion of treatment?” John asked.
“Well,” I answered as a compete ignoramus who believed everything I was saying, “I plan on everything being better. I mean, I had a great life before I was diagnosed (despite your absense, I didn't say). I live in a place that I love, am blessed with incredibly supportive friends, and had a fantastic job. I’ll have all that and more because I’ll be able to work again and I’ll have my health. It’s going to be better than b
efore: It will be totally AWESOME!!!” I gushed (with the aid and warm fuzzy afforded to me by wine).
“Whoa! Well, uh….wow….that is quite the aspiration,” he said. Did I detect a note of sarcasm and/or disbelief on his part? Naaahhhh…
“Not really,” I countered. “I mean, I loved the way things were going for me before and now I have such amazing perspective. Life means more to me than ever before and I intend to make full use of it. Plus, I don’t take things for granted like I used to and I definitely don’t sweat the small stuff.”
“Well, I mean, how do you think you’ll find a job, Sarah? You’ll need to tell them that you have an illness and that will be a problem. How do you get past that?” This is when I told him that my cancer is really none of anyone’s business. It’s called the HIPAA Privacy Law (and in silent contemplation I added: DUH—you’re a doctor, you should know this!).
“That’s really unethical,” he said. “You need to tell them that you have or have had Hodgkins Disease. If you don’t, you’re being amoral and they have every right to be angry with you. They need to know this before hiring you.” At that point I realized that my illness would have absolutely barred him from hiring me as a manager in his privat practice heyday. I have the credentials, the drive, and the personalability, but not the DNA.
Not being able to resist a good argument about which I know—legally, morally, and personally—that I’m right, I said, “Okay, this is my decision. If the hiring authority already knows me based on the fact that it’s a limited industry here in San Antonio, I will say something or acknowledge a concern. Otherwise, it is MY. CHOICE. MINE! I don’t have to tell anyone anything unless I feel it’s necessary. I probably will say something, but, again, that’s totally up to me. Period.”
We ended things on an increasingly awkward note whereupon I gave him permission to call me every few weeks to "check in." Still, he felt the need to offer some solid, completely inappropriate and usolicited paternal advice: “You should either move to a different city or choose a different career. I say this because no one will want to hire you where you are. You might want to consider alternatives….and quickly.”
What a guy.....My Daddi-O.
Can I just say that, by this point, I was completely intoxicated and still shocked by the turn of events that occurred during this relatively short conversation? I mean, really….. We hung up and I was rocked to sleep with the lullaby of drunken slumber, but not without first making wee-hours-of-the-morning slurred phone calls to various friends in an attempt to decompress. I am not lying when I say that, the next morning, I was shocked to discover the numbers I’d dialed the night before, and even more shocked later to learn that I had had TWO conversations with Nancy of which I still have absolutely no recollection. I woke up on Tuesday morning VERY hungover and constantly reminded of the previous night’s copious amounts of wine, conflict, and vulnerability. I started the day with extra–strength Tylenol and several liters of water. I also placated myself by assuming that the amount of intoxicants I’d consumed had to have homicidal effects on my tumors.
Luckily for me, Tuesday, January 20th was Inauguration Day. I am a sucker for pomp and circumstance, regalia, and tradition so, in my hangover-induced stupor, my eyes were glued to the TV as I propped myself up in bed (3 pillows behind my back, 1 under my knees) with my laptop and phone next to me. Aside from the nausea and pounding head, life just doesn’t get better. Yet, whenever I’m hungover (and it doesn’t
happen often considering my tolerance these days) I get emotional. I worry, lament, and cry over life’s smallest challenges and idiosyncrasies. I ask myself WHY WHY WHY about every detail of my life that isn’t in perfect alignment with my grand plans, and swear to never drink again. Ever. (I write these words as I sip on a glass of cabernet/shiraz blend). As I was talking to Judy on the phone while approving Michelle Obama's yellow frock (Judy is my Denver-residing best friend and sanity during these emotionally straining, ridiculously self-loathing and guilt-ridden times), I took the opportunity to take Lola outside for a quick pee. Standing on the grass awaiting her big finish, a familiar stabbing pain hit me fast and hard in the back. This was it: the unexpected, sudden Neulasta effects from late last week. Based on last month’s events, I anticipated said grueling pains around Wednesday or Thursday, so I was surprised when it hit a day early. I can only assume that standing up and walking the few steps to the grass triggered certain nerves, because just walking back inside and resuming my position in bed left me in severe agony and, by now, most of the hangover had faded into a dull headache. It was 3:00 PM when I reached for the Darvocet and waited for it to kick in. Mom called to check on me and heard the distress in my voice as I tried to carry on a conversation--frequently punctuated with cries of pain--at which point she finally convinced me to call the clinic and ask if I can increase my dose. After leaving a message, one of the murses (male nurse) called
back and said that I could absolutely double it. A few minutes later, the phone rang again but this time it was the Doctor--General Wilksie--herself. “I heard your message,” she said. “Are you okay? You sound awful and I want you to be pain-free. Double the dose, stay home, sleep it off, and try to get through this. Remember, this means it’s working.” Done and DONE.
|Sarah's Perspective of Life with Cancer |
While on Darvocet
Later that night, back in bed, the phone rang but the caller was unidentified and, unlike the night before, I opted not to answer. The cryptic message stated: “Hey, It’s Kat, I need to talk to you soon so call me back!” Kat is a sorority sister from back in the heyday of reckless innocence—a member of a group of women who have collectively become a huge source of support these days. “This is really exciting….” she said when I called her back. Then she proceeded to tell me that she spontaneously signed up for a Leukemia & Lymphoma Society Team in Training ½ marathon and wants to raise money and complete it in my name. WOWZA!!! I was overcome with emotion—feeling completely unworthy and inadequate to be honored in such a way—but obviously agreed to it. After all, this is for an amazing cause and I was one of LLS’s regular beneficiaries. GO KAT!!! TNT set her up with resources to track her progress. Her goal is $1,800 and, at last check, she had attained $1,460. I am humbled and honored that she wants me to be an active part of this process and therefore ask for your assistance if you have it to give. To the many of you who have contributed: Thank you!!! It has not gone unnoticed. Please view her progress at:http://pages.teamintraining.org/ntx/ntrails09/kcurtisqxy.
|A personal fave: Silpada stacking rings |
that Mama Jackie bought me for
Christmas during Heidi's benefit
that I was barely awake and unable to hold a conversation, she insisted: "No you HAVE to call me!" I declined. She persisted: "But you HAVE toooooo!!!" I declined. She finally said, “Well, to hell with it. I’ll just tell you: Heidi is throwing you a benefit through her jewelry business!” Ummm……come again? After tossing around basic details, Nancy explained that our friend Heidi, who sells an exclusive line of jewelry called Silpada (http://www.silpada.com/ --sold only in private homes), is having a fundraising party in my honor at the end of February. Since I’m basically…..well…..I can say this now because my lips are loose with wine and the truth always comes out…..broke, I can publically, shamelessly acknowledge that this will fill an immense void in my pocketbook. I am so blessed and honored and cannot believe the generosity of humankind. Many thanks to you, Heidi, and many thanks to Nancy for hosting at your home! I do know that the party will be here in San Antonio on Saturday, February 28th from 5:00-8:00 pm as an open house but is also open to out-of-town guests by mail and via the web. Please contact me if you want some seriously fabulous and funky jewelry ;) Honestly, my cup overfloweth….
I spent Tuesday, January 27th alternately cleaning up and resting as I prepared for my girls’ night in with Heidi and Nancy. They arrived around 6:30 and we ate pizza and drank wine. Well, actually, Nancy had Tuaca-laced Hot Apple Pies and, since I am responsible for turning her on to this sugary alcoholic greatness, I do declare that I’ve created a monster. Our trio--nay, triumvirate--debated about and ruled on boys, babies, and booze--exactly what each of us needed. The next day, however, Mom arrived in order to reclaim her status as Regent Caretaker. She is so selfless and beloved by all who know her that I cannot begin to thank her enough for her willingness to give of herself wholeheartedly and unquestionably to her fully-grown, adult child. Thank you, Mama.
Shortly after she arrived, we headed to County Line BBQ for dinner, first stopping to get the mail along the way. I was astonished to have pulled out several envelopes containing checks and cash from anonymous donors (literally—no return addresses or signatures) telling me to “keep up the fight” and “hang in there.” I don’t know what—or WHO--provoked this but someone or something kicked off the “Save Sarah’s Sanity” campaign. I joke, but this was really no laughing matter. My bank account was in dire straits and I was terrified of what was to come, but, on the advice of experts, I chose not to dwell on that which cannot be immediately changed. And now--what happened? And why? I may never know, but I am speechless and grateful. The few thank-you notes that I could send out involved the following statement: I don’t know that having cancer automatically designates this generosity, but I accept with humility and gratitude. Finally, if this applies to you (and you know who you are): Thank you.
I had chemo on Thursday and General Wilksie was once again very concerned with my blood counts. She rolled her stool up to me, gently placed her hands on my knees, and said: “Have we talked transfusions?” No, but I suspect we’re about to….. After a short discussion about the need to drastically increase my red count versus the associated risks of infection, I agreed to be admitted to NE Baptist for a blood transfusion. Oh, and she would have the paperwork ready for me after chemo. Wait....what? Ex-cuh-yuse me???? You mean I still have to have that SHIT???? She also insisted that I allow the clinic to make an appointment with a neurologist to determine whether or not I’ve had lasting, permanent nerve damage from the Vinblastine (“V” of ABVD), based on the post office incident and array of other symptoms I’ve reported. It was at that moment I realized that this gives a whole new meaning to "going postal." I reluctantly agreed to the neuro consult but later dropped the notion with the theory that, if my nerve damage is THAT bad, the neurologist will catch wind of it, demand my contact information, call, and INSIST that I see him immediately. Cuz that’s the way it works…. So, I’ll just wait……
Given my symptoms and side effects of late, and especially given this most recent development, I asked her a question that I had been putting off for weeks.“I need to raise a really morbid issue,” I said. My Mom noticeably shifted in her seat, possibly fearful at what I might say or irritated hat she had not yet been consulted on this dialogue.
“When I struggle through the hard days—and getting through them is feeling more and more impossible and pointless--I need to know that there’s a reason behind it. So, can you answer something totally out there?” I asked this while averting my gaze from my mother to avoid backing out. This needed to be asked.
“What…..why 12 chemo cycles?” Dr. Wilks asked.
“No. I get that--efficacy and proven protocol, blah blah blah. What I need to know is that, had I ignored the symptoms and not gotten treatment, how long would I have?”
Wilksie didn't blink and didn't move. “If you didn’t seek help, your life expectancy would have been 6-12 months.”
|Passing the boredom during my |
Mom left on Sunday and, later that night, I received a text message from my neighbor stating that my right front tire is going flat and I need to have it filled ASAP. Grateful as I was for her vigilance, I was still totally annoyed at my 2002 sputtering, problematic college graduation-gifted Trailblazer. Talking “car” is like speaking German to me. I just don’t "get it" and I’m very aware that the car salesperson speaking in his native tongue could just as well be calling me a stupid American . . . .or swindling me for a few hundred bucks. I’m not naïve to this fact: just too ignorant about the Culture of Car to do anything about it. Here goes nothing…..
On Tuesday I put on my big girl panties and a really rough, mean, completely intimidating exterior, and braved the Wal-Mart tire and lube center for what I hoped against all odds would surely be a “quick fix.” Having arrived at 11:00 exactly, I was surprised when they told me that it would take a full hour and 45 minutes before they were through. That meant that I had until 12:45 to peruse the hell that is Wal-Mart-on-Chemo before returning for the piece de resistance. I wanted—but did not absolutely, positively need—the following items: Ink for my computer; bathroom trash can; sage green bath rug (let's not get into that again), and bathroom tray to accommodate perfumes and lotions. I did something that I NEVER do: purchased those unnecessary items realizing that they would likely adhere to neither my high personal decorating standards nor my puny bank account. I think I was desperate for amusement and, more importantly, desperate to feel like a solid member of Society—shopping the day away like my affluent housewife compatriates. Side note: I can safely say that, over the last six months, I have literally never purchased anything for myself with cash (although I have received random gift cards) but, at the mercy of the automotive center, felt compelled to browse and, later, experience serious buyer’s remorse over my unnecessary purchases. I returned to the center at 12:45 exactly, stating that I was on-time and ready to pick up my car.
“Ummm……yeah…..your vehicle is…uhhhh….next in line,” said Ralph. “Shouldn’t be but 30 minutes.”
“What? I’ve been waiting for almost two hours and you haven’t even LOOKED at my car?”
“Right…but you’re next,” he rationalized, and then instructed me to have a seat in the waiting room where I could pay $1.00 for a can of soda and watch Madagascar on DVD. Reluctantly, (and with what choice did I have?) I acquiesced. At EXACTLY 1:20 I informed Ralph that my car should be ready.
“Right,” he said. “They’ll be in shortly to talk to you.”
Ten minutes later, I get a tap on the shoulder. “Sarah?” (allow the Prednisone to take over at this moment and ask in its haughty self-righteousness: Since when am I on a first-name basis with the Wal-Mart mechanic???) “You need a whole tire replacement. We’re not allowed to fix the leak based on state law that your levels are so low…..” blah blah blah…..
Unhealthy rage building inside me, I breathed slowly and gently harangued the guy for taking 2 ½ hours to look at my car and determine that it needs a tire replacement. Did that really necessitate 150 minutes mid-week/midday AND a $160 shopping trip??? And yet I presume that it is, indeed, part of the grandmaster Wal-Mart plan. By now it is 1:30 and I am both physically and mentally exhausted with a cart of bathroom supplies, skim milk, juice, and shaving cream at my disposal. Don’t make me use it, man.
I read the entire February 9th issue of Us Weekly before getting another tap on the shoulder. “We just found out that we don’t have your tire in stock. How about we just put on your spare and fill the rest of the tires?”
Taking a deep breath, I contained aforementioned rage and did something I swore that I would never, EVER do. That is to say: I used my illness to my own advantage and I am honestly ashamed. “Do you realize that I’ve been here since 11:00? That’s three hours of waiting for you to examine the vehicle and determine that it needs a new tire but that you don’t actually have it in stock. I am clearly NOT well
It should come as no surprise that I woke up on Wednesday with a sore throat, swollen and tender glands, and body aches. Why, why, why am I always sick???? But I know why….. Between chemo sessions my counts drop so precipitously that I just can’t defend myself against germs. In the words of Miranda on The Devil Wears Prada: I am an incubus of viral plague. As I freely say, however, I am a veritable vessel of nastiness. I was barely able to walk Lola, brush my teeth, wash my face, and change into different pajamas before falling into a 12-hour period of semi-consciousness. My only nourishment, aside from water, was a homemade fruit smoothie that I sipped throughout the day. Thursday was an exact replica of Wednesday, and Friday reflected a moderate improvement whereupon I was able to walk to the mailbox, respond to e-mails, and take a much-needed shower. Wal-Mart returns and tire stores would have to wait until next week as I regained my strength…..
On a side note: I’ve promised my girlfriends that I would update you on my hair growth progress since we ALL want to know. Hey….I GET it. I’m a girly-girl and want all the dirty details as well. I’m nosy as hell and have a morbid curiosity about those things in life normally gone unreported and/or unnoticed. Since I had last shaved my head in mid-December and Mama Jackie took photos at the hospital during my transfusion, what you see reflects a 6-week hair growth. I’ve decided to meander into any given salon stating that my hair is getting too long and that I want “just a little off the top.” Whaddya think????
|6 weeks--January 30th--of hair growth|
Next week brings my SECOND-to-LAST chemo treatment!!! I’ll report more soon!!!