Struggling Through the Late Stages of Chemo
I spent Saturday and most of Sunday in bed but was a little annoyed and more than aware that I had an appointment on Sunday afternoon with Molly, my newly assigned Stephen Minister. I had no idea what the Stephen Ministry was all about but I did know that my church offered to help me in any way they could, namely by hooking me up with a lay minister to talk me through the difficult times, whatever they may be. In my case I could barely handle one-on-one contact, so that’s exactly what we established. We met for the first time on Sunday, whereupon Molly came to my home at 3:30 after I’d spent the day sleeping and doing little else. Not being privy to my past, barely knowing my present circumstances, and willing to stick by me through whatever the future brings, Molly was such a refreshing resource. She is a licensed counselor by trade and opts to counsel other church members in her free time. I cannot imagine the emotional sacrifice that may require on her part. We spoke for just over an hour as she perched on one side of my couch and I remained curled up, blanket and pillow to boot, on the other. She left at 4:45 and I recall finding myself back in bed by 6:30, asleep by 9:00. I was seemingly on the mend from the virus, but not at all at 100%.
And yet, even given my counseling, it was no surprise that I woke up Monday morning exhausted having suffered a night from hell. As per usual the last few days, I had no trouble falling into a blissful sleep and drifting into bizarro dreamland, replete with mocking badgers and grotesquely overgrown toenails; yet, hours into my Sunday night sleep, I awakened in a slick coat of sweat, aching from head to toe. A quick midnight trip to the bathroom afforded me the opportunity to change into a different t-shirt and 3 AM would result in another sweat-induced clothing change. 4:15 found me wiping myself down with a washcloth, and 5:00 would usher in hellacious Tazmanian Devil-like, unfortunately-non-sexual activity between the sheets after which I would realize that my usual side of the queen-sized bed was literally drenched with my own sweat and I would have to scoot to the opposite side. This proved to be a challenge seeing as my body naturally migrates back toward its original habitat and, thus, at 7:00 a.m, I would find me so disgusted to once again be coated in my own nasty filth. I woke up on Monday morning, 9:00, exhausted from apparent round-house karate kicks and long-forgotten college Tai-Bo moves.
I had an 11:00 appointment with H&R Block on Monday for some TAX PAYMENT EXCITEMENT!!! Having worked my full-time job in 2008 as healthcare manager, as well as some side work for my former Dallas boss doing basic recruiting work in my free time, I would typically not require the services of a professional tax preparer as I’m really not that sophisticated. Yet I knew that I could deduct expenses incurred from a catastrophic illness but had no idea how to finesse the figures, so to speak. Fatigue rendered me barely able to drive myself the two blocks to the tax place. Fortunately, I thrust my HUGE PINK CANCER FOLDER at the tax preparer and she took over. I should mention that my HUGE PINK CANCER FOLDER contains the following: EOBs (Explanation of Benefits) from 2,584 appointments and procedures, medical bills (both paid in full and those under payment for the next 150 years), prescription receipts, and any other documentation I’ve been loath to find in my mailbox. Marion, my tax preparer, spent over an hour calculating everything—including medical-related mileage—and tallied a pretty decent refund on my behalf.
And here’s where it gets awesome: In my first impression of her, I instantly noted that sweet, sweet, clueless, analytic Marion has…..how do I put this?.....an interesting means of presenting herself to the general public. Her distracting, garish makeup consisted of bright red blush, harsh black eyeliner, and frosted pink lipstick accented with dark lipliner—early 90s style. Oh how I wished I could work on her (altruistically, of course). A little makeup remover and some updated techniques would have worked wonders (in my selfless opinion). As I was preparing to leave her office a satisfied customer, Marion--now clearly aware of my biophysical condition--said the following: “When you’re done with all of this, I want you to get your makeup done.”
Ummmm….come again? I was wearing makeup, thankyouverymuch. Seriously, I have never had anyone tell me I needed professional help in THAT particular area of my life and I was QUITE offended. Makeup is my artistic outlet! I would never criticize Ansel Adams’s photography or Da Vinci’s Sistine Chapel, would I? Exaaaactly…..
“Thanks,” I scoffed. “I’ll consider it.”
“I had mine done. I’ll give you the name of the person who does it. She’s great. She’ll tattoo it just right, just like mine.”
After record-speed goodbyes, I promptly gathered my papers and left, then laughed the entire way home. Mental note: First, recover from cancer; second, have facial makeup tattooed with the intention of frightening small children and, with any luck, mortifying--TO DEATH I SAY--any remaining malignancies.
I returned home with about 40% energy that was clearly fading fast, then paid bills and completed other mundane tasks before reading the final chapter of my weird 12th century book. Upon drifting into a deep mid-afternoon sleep, I felt tired but otherwise adequate. I woke up from that nap struggling to physically pry my eyelids open but knowing that I had an anxious dog to walk who was doing her very best to cross her back legs while performing the soon-to-be debuted on So You Think You Can Dance Pee-pee Number. As a very devoted dog-mom I had a job to do, but getting out of bed would involve a full ten minutes of planning the tedious maneuvers required to accomplish this first task: Pull back sheets, swing legs over right side of bed, lift self using nonexistent upper body strength, find shoes, etc….. I was starting to realize just how sick and tired I was. I had body aches, raging headache, nausea, fatigue….the works. They said it would get hellacious toward the end of chemo, and this was it. I felt like life couldn’t get worse and that I would just have to struggle through it with only two treatments left.
So, I walked Lola (or, rather, she walked me as I tried to stop the trees from spinning), washed my face, brushed my teeth, made a smoothie (barely; that blasted blender makes too much noise), and got back into bed, taking a highly coveted and hoarded muscle relaxer to help get me through the night. Thankfully, the Tizanidine took effect and knocked me out completely, all the while still wondering how anyone could feel this way and still be alive. I say that not to be facetious, but with complete sincerity: How was I still alive? For the entirety of the day and even more so at night, glancing from side-to-side would cause me to get so dizzy that I’d black out, I could stand up slowly from a sitting position but my vision would turn fuzzy, and I would frequently need to grasp the couch, table or countertops for support as I stood and walked with extreme care. I returned to bed and felt the weight of the world on me as body aches, vertigo, and frequent shots of numbness and tremors intensified throughout my body, despite the dulling effects of Tylenol. I’d close my eyes and feel my body giving out….and I’d get scared. Nay, terrified.
CAVEAT: PREPARE FOR DRAMA…..
I’m dying, I thought. I need help. I figured that it was too late in the night to call a friend for something that may—or may NOT be—fatal, but I also knew that I was seriously ill. If I die, I suppose it’s my time, I remember thinking, ready to write my last rites. Because I’m not an alarmist and was too embarrassed to call 911 for fear that the paramedics would rush me into a trauma bay for a serious case of A COLD (yes, the threat of embarrassment of minor illness overshadows the fear of mortality in my world), I wussed out and called my mom instead. I told her that I was going to call the clinic first thing in the morning. At first, she didn’t understand why I was calling with this information (A: she gets scared to hear from me during the post-5 PM hours and B: I tried, unsuccessfully to convince her that I had palliated my symptoms). Finally, as the tears poured forth, I said, “Mom, I just feel like when I go to sleep tonight I won’t wake up in the morning.” Then, quickly so as to abate an overreaction from Mama Jackie, I added, “But I know I will. I just feel like I know what it feels like to die. My body just cannot handle any more and it just feels ready to give out.”
As a former hospice volunteer, I fearfully felt that I could identify with what it feels like to slowly die and I was absolutely not exaggerating: I was terrified. That night, I hallucinated that someone was in my home looking for me and the only way to escape safely was to pull the covers over my head and fight them off from underneath the coverage of 600 thread count sheets. I emerged from my hallucination face-down, wrenching the top of the sheet tightly around my face.
I woke up on Tuesday morning, February 10th, feeling much better but certainly not 100%. Still, I thanked God for letting me get through the night and arise to experience the early morning stagger to the coffee maker, opening of windows (San Antonio in February can be lovely), and a delightful, sunny morning Lola walk. It was going to be a GREAT day come hell or high water. Mom called and said that she was coming a day early based on last night’s fatalistic call, but first I had a vet appointment for Lola. Before leaving, I came across my thermometer as I was sorting through my Massive Medication Bin. Considering that I happened to be there at the same time that IT happened to be there, I decided to swab it with alcohol and take my temperature for the hell of it. The verdict: 100.3. I must have boiled some brain cells during my recent illness because it is absolutely astounding that I very likely had a high fever for days and it never once occurred to me to take my temperature. In my defense, past illnesses have always presented with extreme nausea which, in this case, was absent. Still, I can respect that neglecting to consider the possibility that I had a temperature is a doozy…even for me. I popped some Tylenol--which eliminated the fever altogether--and continued about my morning. After my elderly canine child was vaccinated and deemed completely healthy minus the wee stages of cataracts, I returned home to sleep…..and sleep and sleep and sleep.
At around 2:00, Mama arrived at my doorstep, ready to play my much-needed personal Florence Nightingale. Earlier that morning I had explained to her that I felt much better --particularly after realizing that the cause of my “dying” was fever and I could now arm myself with Tylenol to fend it off--but she was ready and determined to make the trip that day no matter what. I was her baby girl and she was going to take care of me, my stubborn protests be damned. Even as she arrived (she has her own key, as she—to this day—reminds me), I resumed my all-day nap. I finally emerged around 4:00 feeling slightly worse--in fact declining a glass of wine for the third consecutive night. My trusty thermometer said that my fever was back and I opened a new bottle of Tylenol, the other 100-count bottle having been opened and emptied within the last few months.
Since last week’s errands were interrupted by this nasty virus that seems to come and go at will, Mom elected to have my tire changed, pick up some prescriptions, and do my other bidding on Wednesday. I apparently hadn’t slept enough in the previous days and miraculously managed to sleep all day yet again but, this time, sans fever thanks to stomach-lining-eroding Tylenol. NON-INSIDER TRADING SIDE NOTE: On my recommendation alone I suggest buying stock in McNeil, the makers of this OTC wonder drug.
Just before chemo on Thursday, I told Dr. Wilks about the virus I had just recovered from, assuming she’d reaffirm that it was par for the course at this late stage in the game. Instead, she harangued me: “It was very likely an infection and you could have DIED from that fever. I’d wager that we almost LOST you! Leave it to me to determine if you DO or do NOT need to come in to the clinic. You really could have DIED. We could have LOST you” (I abbreviated that conversation for the sake of time).
I hung my head in shame and admitted that it was probably more serious than I gave it credit for. When she was finally satisfied that my neurons transmitted the message loud and clear, we discussed what would happen after my last chemo which was in a mere two weeks. She instructed me to schedule a CT scan and then arranged to have me see the radiation oncologist the same week of my final treatment. Dr. Wilks mentioned that she didn’t really want me to go through radiation, given my young age and its possible long-term side effects, but that Dr. Gagnon would make that final determination. That day’s second-to-last chemo was delightfully un-newsworthy and I made sure all the nurses knew that my last one was coming up. They had two full weeks to prepare for the clapping, bubbles, and confetti I’d seen bestowed upon so many others as the congratulatory gateway unto fully-restored health.
On Friday I agreed to muster my energy in order to run errands with Mom for a change of pace and scenery. I mean, really, who can refuse Best Buy, Target, and World Market? My point. . . . . .exactly. A few errands and several hours later rendered me exhausted, although I obsessed and focused over the fact that, if I could manage to hold on a few more weeks, I’d start to regain my energy. So instead of complaining, I chose to fantasize about all the ways my life would change when I was healthy again: Freedom to go where I wanted, when I wanted unencumbered by nausea and fatigue, the ability to work again—healthy for both my sanity and bank account alike, and resuming the use of hair products (yay!). Mom left on Saturday and I spent the day doing my weekly chores--only very, very, pathetically slowly. By nightfall I managed to do three loads of laundry, load and unload the dishwasher, water the plants, and other odds and ends that commanded my attention. Even though I didn’t need a nap and I did sleep well that night, I woke up on Sunday once again drained. I pushed through the fatigue with the aid of coffee and went to church but was humbled to discover that I was in no position to be in public seeing as I was among the elderly sitting down instead of standing during various parts of the service. The bulletin indicates to “stand if able” and I, apparently, was among the disabled.
Feeling sick again on Monday, I stayed in bed all day wondering if I’d ever be well again (poor, poor pitiful me), then once again regained enough energy to feel decent on Tuesday. Realizing that “good days” are becoming the exception rather than the rule, I took that as a sign that I needed to accomplish all pending errands while I had the strength. I took my computer to the shop for a repair, picked up paperwork from the drag queen at H&R Block, then went to the bank and post office (where I swear the Crazies all gather because I have never NOT been harassed or “educated” by one Crazy or another; example: This particular trip taught me the history of the cotton gin). I must have been gone for 90 minutes max, but I felt like I had just driven cross-country.
It was a fortunate call for me to get those things done when I could, as I woke up on Wednesday feeling too tired to do much more than shower and walk Lola. I took a nap and woke up not to my internal alarm but to Lola yipping at the side of my bed. It was after 5:00 and she was hungry. Moreover, I had just slept for four hours without so much as rustling the sheets and I had no desire to move. I tried to get out of bed but felt weighted down with nausea, dizziness, and extreme fatigue. This time I knew enough to take my temperature and wasn’t at all surprised at this point to see that it was 101.2. I called Dr. Wilks after business hours and she told me to monitor it with Tylenol; if it doesn’t subside I’d needed to go to the clinic for an exam tomorrow. Two Tylenol every five hours staved off the fever through Sunday, although that initial Wednesday night I started to develop a dry, shallow cough upon laying down which worsened through the weekend.
Mom arrived on Sunday and she was dismayed to find that I was still completely reliant on regular doses of Tylenol to get me through the day so that I felt merely “bad” instead of “awful.” I went to bed very early while she was still watching TV in the living room (Reminder that this is the woman who retires to her boudoir at 8:00 on an ideal night, indicating that this particular bedtime was ridiculously early). That night I formally introduced her to my coughing spells, which were now leading to borderline convulsions and hyperventilation. I awoke on Monday to a fever of 101.8 and called the clinic before my feet hit the floor. At 12:30 I had labs drawn and vitals taken (no fever at the time thanks to Tylenol) and eventually saw Dr. Wilks. She asserted that my symptoms may require hospitalization, that I would likely not have chemo on Wednesday, and that I would be heading to the infusion room for three hours of heavy-duty antibiotics and fluids. My white cell count, previously a 4.4, was back down to a 1.2 so I would be getting another nasty Neulasta shot, despite the bone-crushingly painful side effects. More importantly, the low count corroborated her theory that I was dealing with an infection based on the fever’s stubborn persistence and as I clearly had no immune system to fight it off. She said this was potentially serious but that we’d reserve judgment until we give the antibiotics a chance to work.
That night in bed my cough became debilitating. I had a spell that lasted about three minutes and I gasped for air between hacks. When it was over, I sat on the edge of my bed waiting desperately to catch my breath but I could not stop gasping, feeling as though I was being forced to breathe through a straw. I put my hand on the bedroom doorknob to tell my mom that I needed to go to the hospital but thought twice and instead decided to give it a little more time even though I was most likely turning into a lovely shade of cerulean (again….my I’m not sick enough to bother EMS issue gets me every time). Eventually, I propped myself up on four pillows; I’m a stomach sleeper so you can imagine how uncomfortable that was. Throughout the night, both awake and asleep, the coughing spells persisted.
My fever on Tuesday was 101.2 but I managed to feel somewhat decent with my 3,000th dose of Tylenol. I was also determined not to cancel my CT scan scheduled for 10:00 as it would be interpreted by the radiologist and sent to the radiation oncologist before the next day’s appointment. I desperately wanted to know if I needed radiation and if I was, indeed, absolutely cancer-free. My cough progressed even into an upright AND daytime hours rather than just lying down at night, but I somehow got through the 20 minute CT scan process without moving….I attribute that to my will to see an end to this shithole battle.
I woke up on Wednesday morning alternately coughing and gasping for air and persistently covered in sweat. The thermometer read 103.2 and together Mom and I decided that I should pack a bag in the (very likely) event that Dr. Wilks would admit me to the hospital. We weren’t surprised when she said definitively that I would not be getting chemo and that she would, in all likelihood, have to admit me. She wanted to first confer with the doctors she’d be referring to treat me, so we agreed that, while she was making calls, I would still attend the appointment with the Dr. Gagnon down the hall for the final word on the possibility of radiation.
Dr. Gagnon is a real-life replica of Phillip Seymour Hoffman. He was torn about treating me because I was so unbelievably young as compared to the larger CCCST population he sees. He produced two articles stating that five days a week/three weeks of radiation is standard protocol with Hodgkins Lymphoma and offers the best chance at non-relapse. Besides that, there are still spots on my scan in the mediastinal (upper heart/aorta) area. In all likelihood those spots are scar tissue, but there is certainly no guarantee. The radiologist hadn’t yet dictated his interpretation of my scan, though, so the final report was still out. On the other hand, radiation presents an entirely different set of issues. While the immediate side effects are minimal (mostly fatigue and dry skin) as compared to chemo, the long-term effects are potentially devastating. Radiation is best for older adults as many of those calamitous issues don’t arise for 10-20 years, yet they hesitate to expose me at only 30 (which, two months after my 30th birthday, made me feel young and spritely again).
Specifically for me, since the radiation would blast directly at my aorta, my chances of future heart disease and breast cancer would increase exponentially. Since the doctor seemed to be hemming while I was hawing, I told him that I’m not comfortable making that final decision and that I’d do what he and Dr. Wilks jointly decide, as has been my approach through this whole process. They are the knowledgeable docs while I am the dutiful patient. We decided to meet again in three weeks, at which time he will have received the CT report and interpretation, and will have had time to consult with Dr. Wilks.
A little dismayed at the lack of a ringing endorsement for being cancer-free (which I had imagined would be conveyed through my doctor with a “Congratulations!” and hug, followed by happy exhalations of relief from my sappy, tear-proned sweet mother), we trudged down the hallway into another exam room to await Dr. Wilks’s final judgment. After about five minutes I heard her anxiously call out, “Where is Sarah? I need to talk to Sarah!” I heard one of the nurses murmer something to the effect of “In there,” and she exploded in and explained that the CT scan from yesterday revealed a significant haze in both lungs that was likely pneumonia. She had already spoken with both an infectious disease specialist and pulmonologist—both of whom would treat me in the hospital—and handed me the admission orders. As a previously healthy individual without so much as even broken a bone, I had never before been hospitalized and was very apprehensive about what was in store. Little did I know just how complicated things were about to get…..
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