May 17, 2020 My husband Robert had an unexpected shock when he came home from work one evening around 11:00 p.m. I was lying on the bed, unconcious and bleeding from my right shoulder. He recalls that I was extremely pale and cold to the touch.
I'd had a growth on my shoulder for a while but put it on the back burner of my mind for various reasons. My mistake for not having it checked out...it seemed that there was always something else taking precedence...always just one thing or another. Life. ..'nuff said. As one of my doctors told me later, "Don't look back, just move forward," which seemed like better advice than recrimination and guilt.
What I remember before passing out is sitting on the bed and writing out cards, and suddenly feeling like I was in the vortex of a tornado, with swirling air all around me. Although I'm not a fainter, I thought if I was about to faint I should stay seated with my head down to let the blood flow back to my head. I tried lifting my head up and then felt the same rushing sensation all around me; it was very unsettling and unlike anything I'd ever experienced before. And then...nothing.
Robert called the paramedics who rushed me to the ICU unit at H. Hospital (not my first choice, but you don't make requests when you're unconscious). I was unware of anything whatsoever about my ride and admission to the hospital, the treatments, or anything else.
When I finally came to, I looked around and wondered where the heck I was. I saw a glass door to my left leading to some sort of cement patio or enclosure, and a whiteboard in front of me, but I couldn't read what was written on it because I didn't have my glasses. I figured I was in the middle of some strange dream and decided to go back to sleep. A while later, I woke up again to find I was still in the same place. I felt too weak to move; in fact, I felt somewhat like a lethargic butterfly perched on a rock with no energy to fly away. I looked closer at the whiteboard and saw medical notes - so that was it. I was in a hospital! I wondered if I'd been in an accident or maybe had a severe case of bronchitis, as I'd had a few symptoms as of late.
I drifted off to sleep for a while, and eventually opened my eyes to see one of the night shift nurses looming towards me out of the darkness. She had on huge, dark-rimmed glasses and a mask that seemed to cover most of her face, reminding me of a big owl. She peered closely at me and said she was glad I was finally "coming out of it." She said she was there to suction the mucous out of my throat. I tried to ask her if I had bronchitis but found my voice was very weak, like a whisper, making it quite an effort to speak and be heard. She told me it wasn't bronchitis, but that I would have to speak to the doctor in the morning. I wondered if it could be coronavirus, but was too sleepy to ponder over it right then.
In the morning, several doctors from my "team" came by and said I was lucky to be alive. One commented that I looked SO much better than when I was admitted - I joked that I must have looked pretty bad, then, for I was certainly no beauty queen right now my present condition!
The doctors didn't give me a lot of details, but said that I'd lost a lot of blood and my hemoglobin level had been down to 1.5, requiring a few transfusions and other treatments. Transfusions? I'd never had a blood transfusion in my life! Scary that all this had gone on and I was completely unaware of it. But I didn't have the wherewithall to worry too much...it appeared I was in good hands and frankly, there was nothing I could really do at this point. No strength, no voice, and no glasses! I didn't even have my cellphone. I'd come to the hospital completely unprepared - with nothing whatsoever. How's that for feeling out of control?
I was hooked up to a maze of tubes and wires, and every so often a nurse would come in to check my blood, heart rate, temperature, blood pressure, and other vital signs. I had a slightly elevated temperature, but all my other signs were "stable" and in the normal range. So was it time to be released yet? Evidently not.
A little later two nurses who worked in tandem, Tiffany and Troy (they sound like a country-western duo, don't they?), introduced theselves and said I should let them know if I had any concerns or needed anything. They were the most empathetic persons I had met thus far. They seemed like angels to me in a sea of uncertainty. And they listened, really listened. They took the time to answer my questions carefully. They cared.
Tiffany asked if I had any questions or if anything was hurting me, and I said no, nothing was hurting me. I didn't feel anything, actually, most likely due to whatever meds I had been given. The only thing I felt was hunger, and I asked if I would be getting a lunch.
Tiffany said they wanted to start off with something light, like clear broth or Jello, to make sure my stomach could handle it. I felt pretty sure I was OK in that department. Although I've never been a big fan of Jello, when they brought it later it seemed like manna to me...the best thing I'd ever tasted! I had some problems handling utensils, lifting a spoon or fork to my mouth. So weak! Yet I didn't care to have someone else feeding me, it made me feel so unempowered.
Later that day I was told I had a phone call, and I fumbled to find the hospital phone hidden somewhere among the bedsheets. I finally answered and it was Robert. His first words were, "I can't believe it - I finally am able to talk to you! You're so awesome!"
I didn't feel like I had done anything particularly awesome, just lying around in a hospital bed. I asked him how long he had been trying to get through.
"You've been unconscious for about a week!" he informed me. "I couldn't come visit, and couldn't talk to you until today."
Unreal! I thought I had just been here overnight, but I had been out of commission for a whole week? I just couldn't wrap my head around it.
He went on to tell me how he'd found me and how I was rushed to the ICU. He said he felt better now, knowing that I was all right. "You almost didn't make it," he added.
I never felt I was close to death nor experienced any near-death experiences during this misadventure. No white light, no rising out of my body, no dead relatives. It had just been a black void which sucked me from my home to the hospital, with no recollections in between.
I was in the ICU for another day or so before I was well enough to be moved upstairs. I'm not going to recount every tedious detail here, but I will say I preferred the quality of care downstairs in the ICU over the upstairs rooms and staff. There were many patients asking for help from the nurses for up to an hour before getting a response. And it seems like in any hospital I've been, there is always someone in one of the rooms calling out in a feeble voice, "Help me! Help me!" It made me curious as well as sad for these unfortunate individuals.
I remembered my parents both spending time in this hospital as well as many times in the Emergency Room. I really don't know why they call it an "emergency" room, as most cases aren't treated as emergencies at all. If you're a victim of a gunshot wound or something equally critical, they take you right in, but for everyone else it's basically "hurry up and wait." And wait..and wait.
But I'm digressing here; luckily I didn't have to be detained in the ER. When they wheeled me up to the 4th floor, I first was put in a room with two or three other people...it felt like we were sardines in there with only a thin curtain dividing us. It was also very stuffy. I wasn't sure I'd be very comfortable here, but then, for whatever reason, I was moved to another room on the 5th floor.
This room was more comfortable and it appeared that I was alone here for now. It was quieter and cooler than the other room had been. I had a small dinner of typical hospital food, watched a few things on TV, and prepared to go to sleep (in between nurses popping in to do their usual checking and testing).
I was just drifting off to sleep when I heard an unusual sound from the other side of the curtain in my room. It sounded like a faint whimper of a kitten. I guess I did have a roommate, after all. I listened a while and heard the sound getting louder, as if someone were in extreme discomfort. It sounded like an elderly person, but I couldn't be sure.
Finally I asked, "Are you OK?"
A young, but life-weary voice answered, "Yeah, I'm just having these pains like I get every day. Until they bring my meds I always suffer a while."
We had a little conversation while she waited for her medication. She had grown up in this city and now lived in Bakersfied, and came from a very dysfunctional family where her mother had been in and out of prison for drug counts, prostitution, and other unlawful activities. Due to her drug abuse/addiction, the mother had never been there for her family, leaving them ill-equipped to deal with the world in appropriate ways. Her daughter Marlet, my hospital roomie, had been through her own share of legal issues and turmoil over the years.
I wanted to reach out to her and tell her everything would be all right, but what did I know? It was sad to realize there were many such families in the world, perpetuating a lifestyle of dysfunction over generations because they did not know how how to raise their children in a more effective and caring manner. Absentee parents, abusive parents, addicted parents...where does it end?
Marlet continued to moan and cry in pain, getting louder as time passed. Eventually a nurse came to the bedside and administered her medication, which I assumed were probably heavy-duty opioids of some sort. Once the meds kicked in, Marlet was quieter, and then began calling her father, her husband, and other family members and started badgering them with guilt-inducing complaints. It was hard to listen to.
But back to my own condition...the doctors and nurses who visited me all said I'd made remarkable progress in the time I'd been there. My hemoglobin levels were rising, I was regaining some strength, and had no organ or brain damage as they feared after an ordeal such as mine. I still was in awe that after all that had happened to me and I didn't feel any ill effects to speak of. I wasn't able to sleep very well in the noisy hospital setting, insomniac that I am, but I refused any sleep medication because I knew it would make me more sluggish and weak the next day, and I sincerely wanted to get back on my feet again. The staff assured me that physical therapy would help a great deal with that.
One day I was trying to walk down the hall with assistance and it suddenly became too much for me. I didn't like being a patient; I didn't like feeling like an invalid who might need a walker to get around. I wasn't ready for that yet. I mean, didn't my parents just go through all this not long ago? I wasn't ready... I wasn't ready!! I broke out in uncontrollable sobs just thinking about everything.
A nurse assistant coming out of the next room saw me crying and gave me a little pep talk. "Don't you worry, honey...things will get better as you go along! Just remember that all this is only TEMPORARY."
She was casually dressed in jeans and a medical smock with dogs all over it, and spoke in a crackly, straight-from-the-hip voice that reminded me of my first mother-in-law. She was a little "rough around the edges" but it was obvious that a good heart was her shining quality. Her simple words calmed me down and enabled me to get through my day more confidently.
"Temporary"...how true that was. When you stop and think about it, just about everything in life is temporary, is it not?
Well, H. Hospital had its good qualities and bad, but what I disliked the most was the fact that they gave me strong opioids (morphine) inadvertently, causing vivid waking dreams which I thought were real! I could hear and speak with the persons around me, yet I was in a different environment altogether. (These dreams will be recounted in another blog for anyone so inclined to read them).
The hospital wanted me to stay there a few more days and receive physical therapy and other needed things, but when a nurse roughly yanked me over in the bed, hurting me to some degree, and then gave no sign of empathy or remorse, I knew I did not want to remain in this hospital another minute. I spoke with the caseworker and said I REALLY needed to get home, where I could get more rest and get back to normal. She suggested I try staying one night at the rehabilitation center and receive my physical therapy there, and I agreed to try it one night, knowing I probably would still rest better at home.
Robert came up later to pick me up; the first time they actually bent the covid-19 rules about visitors. I thought I was going home, but in the meantime an opening presented itself at the UC Irvine Medical Center, where their technology was more advanced for cases such as mine. But being under the influence of the opioids, I didn't fully understand WHY I was going to this other medical center. Was it a tour? A research study? Robert didn't really explain it all, he just said I needed to go there and an ambulance would be taking me there. I felt angry and disappointed. I didn't even have any shoes to wear, and no idea what I would be doing and where to go once I arrived! Robert wasn't allowed to go with me, either, adding to my uncertainty. I could hardly speak, I was so upset.
Beautiful bouquet from my family
I had an interesting ride in an ambulance to the UC Irvine Medical Center. Once I recovered from my angry feelings about the whole situation, I decided to sit back (well, lie back) and enjoy the trip while making some conversation with the two paramedics who transported me. They seemed to enjoy their jobs, one of them commenting that "no two days are ever the same."
At last we arrived at the medical center, and I was wheeled into a small room which reminded me of the offices in the old science building at Cal Poly Pomona. I waited there a short while before one of the professors/doctors came in and gave me a brief form to fill out. The way it was worded, I was a little confused as to whether I was applying for a job or agreeing to be part of a research study. He then told me I could put my feet up on the table if I wanted to, which seemed sort of unusual. I felt like I was still experiencing the effects of the opioids, where real life was merging with dreamlike sensations.
Another person, who I thought was a student but turned out to be a doctor, came in afterwards and had a few more forms for me to complete. She also said she had to look through my purse for any "contraband," which most likely included weapons, drugs/medication, and even vitamins (they wanted patients to take their own prescribed supplements). For some reason I didn't care for this doctor; she seemed to have her own agenda. I wondered if she was possibly was working on a research project of some sort. She just didn't seem to have the empathy that I valued as important in the medical field. I felt very guarded around her.
Robert texted me a few times, and finally I was able to answer. I still was not happy that I had to be in yet another hospital, but I know he was hoping I could get better treatment here and be healed. Poor guy, he had been through a lot with this whole misadventure; more than I even realized at the time. Both sides of the family had thought it was the end for me based on feedback from the doctors early on at the other hospital. I had no idea I was creating such turmoil for everyone while I was still unconscious...and had no idea Robert's sister Silvia started a "prayer group" on the phone to share positive thoughts. Family members and friends had given us gifts of things that were much needed, as well as uplifting cards and messages. I'm not going to list them all here, but they know who they are and hopefully know how much they are appreciated. Feel the love! All that good energy must have helped, as I came out of it intact.
UCI Medical Center
It turned out that this "office" was actually my hospital room. It was comfortable enough, and the staff seemed efficient and professional. There were all the usual tests, with the expected poking and prodding. I didn't receive much of a dinner as I was scheduled for an MRI the following morning.
The MRI was painless, but a little disconcerting. The worst part of it, for me, was not being allowed to have any food beforehand. I was bundled up on a gurney, strapped in, and covered with a heavy mat of some sort. I'm not going to explain all the medical and technological aspects of the procedure - this information can easily be obtained via google if one is interested.
The gurney moved slowly through a "tunnel of light," and as I entered the chamber I heard what sounded like crazy drumbeats on all sides of me. It made me feel like I was on an African safari, or perhaps had stepped back in time into a wild disco scene. I had to close my eyes; it made me dizzy and a little queasy to try and experience this scenario on an empty stomach.
After about 45 minutes this adventure was over and I was wheeled back to my hospital room. I couldn't wait for breakfast to be brought to me - I was famished! But I had to wait a bit as it was now lunchtime. Whatever...just bring on the food!
The UCI hospital's cuisine was infinitely better than most hospitals. They have a special food service department that provides a picture menu to the hospital patients, allowing everyone to choose from a variety of taste-tempting dishes, all tailored to the dietary needs of each particular person. A breakdown of sugar, sodium, fat, and all other essential nutritional facts was listed alongside each selection. Such an innovative, yet sensible idea! Patients were bound to have a better appetite when allowed to make a choice, and a choice that was healthy at that. I enjoyed a number of tasty meals, from Mexican to Chinese to a simple turkey sandwich. But the highlight, in my opinion, was their delicious blueberry pancakes. Best I ever had!
Soon I was moved upstairs to another room which I shared with another woman, Mary. She was a dark-haired, somewhat feisty woman in her mid-fifties who had recently lost her husband. But irony of ironies, this was another patient who suffered from extreme pain throughout her body, causing her to cry out at various times around the clock. The nurses were quicker to respond at this hospital, however, but perhaps this was due to our room being right outside the nurse's station.
I talked a little with Mary once I felt she was in the mood for conversation. I told her a little bit about my condition and life, and she shared with me that she had been in and out of the hospital countless times in the past ten years for pain issues they couldn't resolve. She said she felt like a professional patient. She had no children but was raising her sister's child as her own, a three-year-old boy who called her "Mamo." She would cry every time she spoke to the child on the phone, assuring him she would be home soon and they would have ice cream sundaes. In truth, she didn't know when she would be getting out and had a long road ahead of her with physical therapy.
Speaking of physical therapy, I was overjoyed when a physical therapist appeared one morning at my bedside. I still was unable to walk without assistance, and wondered if I would ever get back on my feet again. So the start of physical therapy brought great hope to me. I remembered how my father did all the exercises recommended for him after he broke his hip and the steady progress he made. I kept him in mind as a constant inspiration, although I knew not to expect immediate results.
The therapist, Mike, showed me some simple foot and leg exercises to start out with. To the average person, these exercises would seem to be nothing much, a lightweight drop in the bucket. But after being confined to a hospital bed with little strength in my legs, they were a healthy challenge to begin with. One exercise involved moving the foot back and forth vertically ten times. Then I was to move each foot in outward circles for the same amount of times. Then, lying on my back, I was to raise my legs slowly into the air and then lower them gracefully back down. This last exercise was similar to a yoga move I remembered from long ago. In that yoga exercise, the person would hold the legs for five seconds just above the bed before slowly lowering them, which was great for the calves as well as the lower back.
Mike gave me a few more exercises to try before helping me to my feet. He put a safety belt around himself and me for stability, and then observed how well I could stand in place, which was rather unsteadily. He then had me walk carefully to the hospital room door and back. I was glad my roommate was sleeping, because I felt I was shuffling along uneasily, like the old man Tim Conway used to portray on "The Carol Burnett Show," with comic effect. But in this case, I really didn't want anyone to laugh.
Mike told me I did a good job for my first day, something they undoubtedly told everyone to keep them motivated. He told me to practice the exercises in bed as often as I could, and that he would be back again the nest day to build on what I had learned today. And back he was, before I'd even eaten breakfast or adjusted my attractive hospital gown (Ha! attractive if you like the circus tent look). I told him I thought I'd be more ready for the exercises after I had at least eaten and got myself together, and he agreed to come slightly later the next day.
By Day 5, definite progress had been made! I was able to walk with a walker out of the hospital room, down the hall and back again. I was reminded to keep a steady gait and to not hunch over too much, which wasn't always easy to do. When I felt unsteady walking, I tended to hunch over more, which in turn would make my walking unsteady and on and on in a vicious cycle. But the fact that I could walk with a walker and had more flexibility and strength gave me a world of confidence. I loved being able to see some progress, slow as it was.
I felt bad for my roommate Mary, who refused physical therapy because of her pain. She said she admired me for sticking with it, but didn't feel she was ready for it yet. And perhaps she wasn't. She had swelling throughout her whole body, whereas my swelling was mostly on my arms and hands. They eventually did an ultrasound and found she had numerous clots which were causing the swelling. She wasn't happy to learn about the clots, which untreated may travel and become lodged in the arteries, yet she was grateful to find a possible answer for all the pain she had been encountering. One step towards a healthier life.
As for me, I was apprehensive about the possibility of clots as well. The medical staff didn't seem too concerned about my intermittent swelling, but one doctor finally ordered an ultrasound to "rule out any DVTs" (deep vein thrombosis). Soon after the ultrasound, my nurse, a man of Hawaiian descent with a magestic tattoo of an eagle's wingspan across his arms, informed me that my ultrasound was clear, no clots. Yay! One less thing to worry about at this point in time.
The care I received at UCI was preferable in many ways to that at H. Hospital. Staff was quicker to respond, as I mentioned previously the food was better, and of course this medical center was highly-rated for their leading technology and treatment for cancer and other serious conditions. I had several nurses who went out of their way to make me feel comfortable and at ease. I can't remember all of their names, but the ones who come to mind are Erwin, the tattooed guy originally from Hawaii, and Mary (yes, another Mary), one of the night nurses. Erwin was careful to explain all procedures to me, and also gave progress updates to Robert, who greatly appreciated them since no visitors were allowed. Mary had the empathy to sense when I needed my bed tray brought closer, as I still had weakness in my arms and had trouble moving it by myself. She would bring me a container of ice chips when I needed it most, and was mindful not to yank off my arm dressings too quickly, thus avoiding pain and excessive bleeding. She shared some Bible verses and apps with me, not in a pushy way but rather as a souce of comfort at this sometimes disquieting time. Hats off to the nurses who do so much! They literally put their lives on the line every day, and I can't express my gratitude in words.
I appreciated all the calls and texts from family and friends while I was hospitalized. My sister Susie thought I might be lonely or bored during my sojourn and called frequently, but in truth I was neither. Between nurses checking my vitals, being sent downstairs for various tests, meeting with my care team, having meals, and carrying out my physical therapy, there was no time to feel lonely, let alone bored. I preferred texting over talking on the phone since it was often difficult to hear due to the noise level. One time my other sister, Lynda, called just as lunch was being served. Rather than promise to call her back and later not be able to follow through, I put her on speaker phone and we conversed while I had my lunch. I realized that sometimes people wanted to hear my voice as a way to gauge my strength and recovery.
In retrospect, should have known things were serious when my daughter Tinya called me every day, starting from the day I was first coherent at the other hospital. Under normal circumstances we'd talk once a week, but the current situation was definitely not "normal." She also called the hospital every day for updates on my condition, and she and Robert in turn relayed this information to everyone else. Such teamwork! It's a shame some of the doctors told them that I might not make it, or that if I came out of it I might have brain or organ damage. I know the hospital staff just wanted to be honest, but it seemed off the mark to make that assumption and present it in such a negative light. But what do I know...all the most serious things happened when I was unconscious.
As usual, I had trouble sleeping at night. The hospital bed I had didn't help matters any. As soon as I was comfortably dozing off, it felt like some invisible hand started working the adjustment controls, causing the bed to go up and down and sometimes from side to side. It freaked me out the first time it happened...I thought a nurse or someone else had come in to adjust it. But there was no one there! I called a nurse in to check, but the bed was behaving normally by the time she came in to see. Had I dreamed it? The next day I noticed the bed acting up again and asked Erwin about it when he was on duty. He informed me that it was a "pressure spot bed" and that it adjusted to your body's pressure in an attempt to make things more comfortable. NOT. It obviously had the opposite effect on me, waking me out of sound sleep at times. But there was evidently no other bed currently available, so I agreed to put up with it a couple more days.
The health care team came in the day before my discharge to let me know my status. They didn't mention the "C word" much, maybe so as not to be too upsetting to me. They told me the cells had spread to the bone and they weren't sure which course to take. One doctor, Dr. S, said sometimes a limb might be amputated to prevent further cancer growth, but he didn't feel this was a good option in my case. He said once all the test results were in they'd have a better idea what to do next. In the meantime, I was to eat healthfully and try to gain back some weight so I'd be in a better position if I started chemotherapy, as many people lose weight if they experienced nausea and vomiting. The thought of chemo scared me more than anything else, seriously. I was afraid it would do me in.
But I didn't dwell on any of this as I prepared for discharge. They checked to make sure I'd have someone at home to help me (Robert), and observed to make sure I could perform simple operations, such as dressing myself and brushing my teeth. I had adequate strength and mobility with the walker to get around the house and had a good understanding of the aftercare instrctions. So...time to go!
It was a happy day when the nurse wheeled me downstairs where Robert was waiting with the car. I was so glad to see him! It seemed like it had been an eternity. The world looked fresh and vivid to me, and indeed, this was a fresh start as I began my post-hospital life. I couldn't obsess over the "what-ifs" right now; my main thought was to establish some semblance of normalcy as I returned home. Home! The words to one of the Beatles songs rang through my head: "We're on our way home...we're on our way home..."
There's no place like home!
Aftermath
Perhaps I should have made note of my progress day by day upon my release from the hospital, but I didn't want to bore everyone! There hasn't been a lot of post-hospital drama, and that's a good thing.
Coming home was a joy. Robert took off a week or so to take care of me, which was really helpful when I couldn't walk very well or get up from a chair without assistance. Jody came out and brought a walker which worked better than the one the hospital sent. She also brought some medical supplies they had from Mark's recent convalescence. The new bed and other items from Robert's family were a godsend...THANK YOU!
I received many beautiful cards, but the one pictured above holds a special place in my heart. My little grandson, Indie, created it! It includes some of my favorite things: butterflies, turtles, frogs, and flowers...I just love it.
Before I started my treatment, I had several "at the gate" visitors. Paul, Joanie & Susie on one occasion, and Uncle Paul, Pat, Danny & Sandy on another. It was great to see everyone, and it gave me quite a boost to visit with them, even if rather remotely. Doctor's orders!
I was a little nervous about starting immunotherapy. The oncologist explained how it worked (with the immune system to target the cancer cells and heal from within), and described some of the side effects I might expect. I was especially concerned about nausea and vomiting; I had lost so much weight that I certainly couldn't afford to lose any more. He recommended I take Zofran, an antimetic, one hour before my treatment to avoid stomach upsets. He also suggested eating foods like rice and yogurt.
The immunotherapy medication prescribed for me was called Erivedge (Vismodegib) which has been used since 2012 to treat basal cell carcinoma. I am happy to report that after two months on this medication, my side effects have been minimal. I've lost my taste for certain foods (how I miss pizza!), some joint pain, and just started having some hair loss. But no nausea or vomiting- yay! I still have a healthy appetite, but mostly crave foods like oatmeal and rasberry yogurt. Luckily those foods are good for me. :)
The downside of taking this medication is that I am to stay mostly at home and not see anyone - mask or no mask. During this time of Covid-19, the doctor said I needed to be extra careful as I am especially vulnerable right now. I can go to the drugstore drive-through for things I need but must avoid close contact with people and crowds. We did eat at a couple outdoor dining venues, but only when there were little or no people there. It's not easy sometimes, but what about this whole year has been easy?
Lynda made me these lovely masks, and the pillowcase behind it she made from an old shirt of my dad's. How special is that?
And here I am, able to walk again unassisted. Glad to be alive and taking each day as it comes. Grateful for the love and support of family and friends! And realizing that life is not always a cakewalk, but a person should never give up on hope.
But Wait, There's More! April 2021
Well, it’s been a while. I guess I should’ve known things wouldn’t be that easy.
If this were a regular blog I would have been posting on a weekly or monthly basis, sending out updates, and maybe even generating income. Mine is none of those things, but rather a handy place to chronicle my experiences on the road to recovery.
November, December and most of January were pretty good months. I felt good! My CT scan results in November showed the nodules were disappearing or shrinking, with many down to half their former size. Liver and kidneys, heart and everything else were all fine. I was also fortunate in that my glucose levels, cholesterol, sodium, and other readings were in the normal range, with the exception of iron still being a little low.
Both my doctors were very pleased with the results. “I’m so proud of you!” my oncologist, Dr. M., said at my November appointment. “You’re coming along nicely. We’ll have to figure out what to do afterwards.”
Afterwards! Could it really be I might be getting my normal life back at some point? It was an optimistic glimmer of hope to cling to.
Although I still could not mingle with family or friends over the holidays (due not only to Covid but to my vulnerability while on this medication), I did have some “at the gate” visitors as well as texts, calls and cards from loved ones. I don’t really get sad being alone on Christmas, although sometimes memories of family get-togethers in the past will bring a twinge of wistful nostalgia. I also missed seeing my grandson Indie, who has a way of growing up too fast.
January 1st, New Year’s Day, we actually took Summer for a walk in the park! The park wasn’t crowded and of course masks were worn, as always. It was a beautiful, sunny day and we also took a drive on the outskirts of town, taking photos of orange groves and such. It was SO good to get out and feel halfway human again!
Around this time we managed to get Summer a good bath and then in to the veterinarian’s office for some overdue shots and a check-up. It was a little different experience waiting in the car while the assistant came out to get the pets, one by one, instead of the usual in-person office visit. But whatever works, right?
Sometime In January I started to notice symptoms of the right-side lymphedema which had been troublesome a few months back. Although my arm and hand weren’t swollen right now, my right breast still was (and had been all along, to some degree). It looked a little funny, with the left breast so small after my weight loss, and my right one so HUGE, like an overfilled water-balloon. But the looks of things were the least of my worries. The heaviness on my right side made my back hurt, and slowed me down when I was walking around.
I'd been having other ongoing discomforts, such as numbness and pain in my fingers, and severe muscle spasms in my feet. Ouch! Some of these spasms rivaled labor pains, with a few of them reducing me almost to tears. My sister Susie’s friend Susie, also a cancer patient, said she had good results with Thera-Worx. I’m skeptical about most things that people recommend, because they often don’t work for me or I’ll have some side effect from them. And I also have to be careful of anything that induces bleeding; even aspirin or certain muscle rubs can be problematic. But wow! Just wow! During one severe spasm, Robert brought out the Thera-Worx and the results were IMMEDIATE! The pain was completely gone! I couldn’t believe anything could work so quickly. The active ingredient in this product is magnesium sulfate, and although magnesium can be taken in pill form, I doubt it would have such instant results. I shared this gem of a product with my doctor, who undoubtedly has other patients suffering from the same spasms.
Aside from the expected side effects of the meds, my right arm was starting to hurt more. Also, the tumor site on my right shoulder, which had flattened during the time I had the favorable results, started to “bubble up” again, causing the time it took to change the dressing a little longer. I mentioned these things to the doc at my January appointment and he said he wondered if the immunotherapy had “stopped working.” He ordered another CT scan and a blood panel, and asked that I come back after that.
I wondered what could have caused the Erivedge to suddenly stop working. I certainly was trying to stick to the program. I wondered if missing four days of the meds around Christmas might have thrown things off. I always have to call for this medication on a month-to-month basis, and I especially made an effort to call earlier this time with the holidays coming up. So what happened? The medication was never delivered, with no notice about it forthcoming. I called to follow up on it and they said they "had no record of it.” What? So another one was shipped out. Second shipment...never received! Lather, rinse, repeat! I finally received the third shipment, FOUR DAYS LATE!
Dr. M. said he wasn't sure if missing the four days of treatment would have caused anything to go awry, but he did explain that when immunotherapy was working properly, it set up "roadblocks" or checkpoints to keep the cancer cells from getting through. Sometimes the body turns against itself and allows one of the sneaky cancer cells to push through or around the checkpoints, creating havoc within the system. Then something else must be done.
When I received the results from the scan, I saw that I had indeed been correct about the nodules multiplying and increasing in density. My first thought was, "Why me?" But I really had no time or inclination to fret or cry over it. I really do NOT like a lot of drama, and thus do not post all my personal medical information on social media. I know some people are able to get support from the masses, but I prefer to share such info with a select few. Why? Because people either overreact, as one person did: "Oh, NO! Oh my God, what are you going to DO?" Or they will start giving you tons of advice, mostly pertaining to diet, when often they aren't in any position to do so. "Don't have carbs!" "Don't eat meat! "Never have dairy!" "Avoid all sweets!"
Don't get me wrong. I appreciate information from people who have had cancer and wish to share what worked for them. Their views hold more water for me. Yet we must remember that each case is different. Mine is something of an anomaly...the doctors at H. Hospital said they had "never seen anything like it." An anomaly for sure, in that they did not even expect me to live. But somehow I proved them wrong, with huge kudos to the care I received in the Intensive Care Unit there.
My GP doctor said that I'm a "healthy person with an unhealthy condition" -- that condition being malignant basal cell carcinoma. I didn't eat wrong, smoke, or engage in any known carcinogenic activities. My mistake was most likely getting too much sun in my formative years, and not having the growth checked out early on.
So now what? Dr. M. wants to try another immunotherapy. This one will need to be administered via IV every three weeks. It is the same type of immunotherapy successfully used on Jimmy Carter when he had melanoma in 2015. And he's in his 90s now! I guess if it's good enough for him, it's good enough for me.
That's not to say I don't have some trepidation. Of course I do. But it's necessary to move forward in spite of it.
As always, I am grateful to my family and close friends and confidantes who have been with me on this ride. I appreciate the love, cards, calls, prayers, good vibes, and thoughtful gifts. I appreciate YOU!
Stay tuned...
First Keytruda Infusion - May 17, 2021
Today is a strange anniversary. It was one year ago today that I was rushed unconscious to the hospital and all the fun started. I'm celebrating that anniversary by going to Newport Beach for the first Keytruda infusion.
Before the infusion, we met with the doctor briefly to go over some concerns I had; primarily that I had been experiencing an irregular heartbeat on several occasions.
It wasn’t a pounding heartbeat or a racing one, and didn’t seem to be related to anything I was doing at the time. When lying down before going to sleep, I sometimes put my hand over my heart (don’t ask me why I do this, because I’m not really sure myself). Normally my heart beats steady and true, regular as anything. But one night I noticed my heart beat maybe four times and then missed a beat. What? I kept my hand on my chest and continued to monitor, and then felt one - two - three - four - five - six - seven beats and then another skip. Hmmm! Further monitoring revealed more skipped beats with no apparent pattern. I wasn’t sure what to think.
This happened on several days, with no other health or physical/emotional incidents leading up to it. Could it be a delayed reaction to the Erivedge (which I would be discontinuing when I started the Keytruda)? Of course I looked online for possible answers, and was mostly reassured that heartbeat irregularities were often nothing to worry about.
All the same, Dr. M. ordered an EKG to be done before I proceeded with the infusion. And medical insurance being what it is, we had to wait quite a while before it was approved. “The waiting is the hardest part…” Ain’t that the truth, especially when a person is already apprehensive about a whole new procedure.
But eventually it was approved, the EKG was performed, and the doctor said the readings came out “perfectly normal.” Go figure!
The Infusion Room was much different than I expected. I was expecting maybe a clinical, off-white setting of cubicles containing hospital beds with IV tanks and medical equipment alongside them. Instead, comfortable recliners in cool earth tones with handy tables and other amenities was the setup here. The overall ambiance was one of peaceful relaxation, and the patients did not appear to be stressed or in any discomfort. This caused me to breathe a big mental sigh of relief.
"Everything looks pretty chill," Robert remarked, echoing my thoughts. I was glad he was allowed to come in with me during the treatment; it made me feel much more at ease.
The clinical assistant read me some information about the possible side effects from Keytruda, the most common ones being fatigue, anemia, itching, nausea, rash, decreased appetite, hyperglycemia, hyponatremia, and a host of others. I tried not to focus on these possibilities but rather on my eventual healing.
I was introduced to Rosemarie, my nurse-technician. She seemed a very competent as well as caring person, and answered any questions I had. She also asked if I’d like juice or water or maybe a snack. So hospitable! I felt like I was a passenger on an airplane for some reason. Cocktails, anyone? How about a Mai Tai?
She put a saline rinse in my vein first, and shortly thereafter began the Keytruda. I didn't feel a sudden rush of warmth or really anything much at all, and the whole process actually went very smoothly. Rosemarie was a pro, and I felt confident in her hands. Dr. M. came by a little later to check on things and asked how I was doing.
"Much better than I expected!" I replied, most sincerely. "Rosemarie is great."
"We wouldn't give you any bad stuff," the doctor said, in that inimitable jovial-sounding voice of his. "You'll be just fine."
I wish I could say that I experienced no side effects from the Keytruda infusion, but that wouldn’t be accurate. The first thing noticed was fatigue. If I thought I’d become a lazy slacker previously, that was nothing compared to how I was the first week or two after the infusion. And weak…with little energy whatsoever.
I lost much of my appetite. I didn’t feel really nauseated, thank goodness, but most foods had little appeal to me and it was tiring just trying to eat them. I managed to shovel down some oatmeal with dates and blueberries in the morning but didn’t enjoy it the way I usually did.
Meats or anything greasy tended to turn my stomach. I’ve never been a big meat-eater, but with the low iron count I was supposed to be eating more meat, eggs, dark greens, and other iron-rich foods (don’t send me a list of these; I already have several, thank you). It was difficult to do this right now, and I hoped the iron supplement would help tide me over.
I just wanted to drink a great deal of water and have ice chips throughout the day. I had such a dry mouth! I knew sometimes craving ice was a sign of anemia, and I hoped that wasn’t my situation again.
ITCHING! That was the worst side effect for me. It started on my right arm, which was already swollen and itching from the lymphedema. I also felt extreme itchiness on my back and sometimes scalp. It was maddening! The medical office suggested some over-the-counter remedies which didn’t do that much, really. Instead, I found ice packs and damp washcloths to be more helpful.
It was also an exhausting time because our dog Summer had a recurrence of the vestibular disorder she experienced almost two years ago. She had trouble with balance and walking, and refused to eat her dry food. She also had intermittent incontinence and diarrhea. Very difficult to deal with, but I’m SO grateful Robert was there to carry her outdoors, to encourage her to walk, and to do all the things I couldn’t at this time. He's a godsend!
I was feeling somewhat better by the third week…actually the day I went for my second infusion. The doctor was concerned because my bloodwork showed low iron levels and anemia again, and suggested a blood transfusion. Oh, no! I know I’d had several in the hospital when I was unconscious, but surely I didn’t need one again! Grr…grumble…bumble.
May 17, 2020 My husband Robert had an unexpected shock when he came home from work one evening around 11:00 p.m. I was lying on the bed, unconcious and bleeding from my right shoulder. He recalls that I was extremely pale and cold to the touch.
I drifted off to sleep for a while, and eventually opened my eyes to see one of the night shift nurses looming towards me out of the darkness. She had on huge, dark-rimmed glasses and a mask that seemed to cover most of her face, reminding me of a big owl. She peered closely at me and said she was glad I was finally "coming out of it." She said she was there to suction the mucous out of my throat. I tried to ask her if I had bronchitis but found my voice was very weak, like a whisper, making it quite an effort to speak and be heard. She told me it wasn't bronchitis, but that I would have to speak to the doctor in the morning. I wondered if it could be coronavirus, but was too sleepy to ponder over it right then.
In the morning, several doctors from my "team" came by and said I was lucky to be alive. One commented that I looked SO much better than when I was admitted - I joked that I must have looked pretty bad, then, for I was certainly no beauty queen right now my present condition!
The doctors didn't give me a lot of details, but said that I'd lost a lot of blood and my hemoglobin level had been down to 1.5, requiring a few transfusions and other treatments. Transfusions? I'd never had a blood transfusion in my life! Scary that all this had gone on and I was completely unaware of it. But I didn't have the wherewithall to worry too much...it appeared I was in good hands and frankly, there was nothing I could really do at this point. No strength, no voice, and no glasses! I didn't even have my cellphone. I'd come to the hospital completely unprepared - with nothing whatsoever. How's that for feeling out of control?
I was hooked up to a maze of tubes and wires, and every so often a nurse would come in to check my blood, heart rate, temperature, blood pressure, and other vital signs. I had a slightly elevated temperature, but all my other signs were "stable" and in the normal range. So was it time to be released yet? Evidently not.
A little later two nurses who worked in tandem, Tiffany and Troy (they sound like a country-western duo, don't they?), introduced theselves and said I should let them know if I had any concerns or needed anything. They were the most empathetic persons I had met thus far. They seemed like angels to me in a sea of uncertainty. And they listened, really listened. They took the time to answer my questions carefully. They cared.
Tiffany asked if I had any questions or if anything was hurting me, and I said no, nothing was hurting me. I didn't feel anything, actually, most likely due to whatever meds I had been given. The only thing I felt was hunger, and I asked if I would be getting a lunch.
Tiffany said they wanted to start off with something light, like clear broth or Jello, to make sure my stomach could handle it. I felt pretty sure I was OK in that department. Although I've never been a big fan of Jello, when they brought it later it seemed like manna to me...the best thing I'd ever tasted! I had some problems handling utensils, lifting a spoon or fork to my mouth. So weak! Yet I didn't care to have someone else feeding me, it made me feel so unempowered.
Later that day I was told I had a phone call, and I fumbled to find the hospital phone hidden somewhere among the bedsheets. I finally answered and it was Robert. His first words were, "I can't believe it - I finally am able to talk to you! You're so awesome!"
I didn't feel like I had done anything particularly awesome, just lying around in a hospital bed. I asked him how long he had been trying to get through.
"You've been unconscious for about a week!" he informed me. "I couldn't come visit, and couldn't talk to you until today."
Unreal! I thought I had just been here overnight, but I had been out of commission for a whole week? I just couldn't wrap my head around it.
He went on to tell me how he'd found me and how I was rushed to the ICU. He said he felt better now, knowing that I was all right. "You almost didn't make it," he added.
I never felt I was close to death nor experienced any near-death experiences during this misadventure. No white light, no rising out of my body, no dead relatives. It had just been a black void which sucked me from my home to the hospital, with no recollections in between.
A young, but life-weary voice answered, "Yeah, I'm just having these pains like I get every day. Until they bring my meds I always suffer a while."
We had a little conversation while she waited for her medication. She had grown up in this city and now lived in Bakersfied, and came from a very dysfunctional family where her mother had been in and out of prison for drug counts, prostitution, and other unlawful activities. Due to her drug abuse/addiction, the mother had never been there for her family, leaving them ill-equipped to deal with the world in appropriate ways. Her daughter Marlet, my hospital roomie, had been through her own share of legal issues and turmoil over the years.
I wanted to reach out to her and tell her everything would be all right, but what did I know? It was sad to realize there were many such families in the world, perpetuating a lifestyle of dysfunction over generations because they did not know how how to raise their children in a more effective and caring manner. Absentee parents, abusive parents, addicted parents...where does it end?
Marlet continued to moan and cry in pain, getting louder as time passed. Eventually a nurse came to the bedside and administered her medication, which I assumed were probably heavy-duty opioids of some sort. Once the meds kicked in, Marlet was quieter, and then began calling her father, her husband, and other family members and started badgering them with guilt-inducing complaints. It was hard to listen to.
She was casually dressed in jeans and a medical smock with dogs all over it, and spoke in a crackly, straight-from-the-hip voice that reminded me of my first mother-in-law. She was a little "rough around the edges" but it was obvious that a good heart was her shining quality. Her simple words calmed me down and enabled me to get through my day more confidently.
"Temporary"...how true that was. When you stop and think about it, just about everything in life is temporary, is it not?
Well, H. Hospital had its good qualities and bad, but what I disliked the most was the fact that they gave me strong opioids (morphine) inadvertently, causing vivid waking dreams which I thought were real! I could hear and speak with the persons around me, yet I was in a different environment altogether. (These dreams will be recounted in another blog for anyone so inclined to read them).
The hospital wanted me to stay there a few more days and receive physical therapy and other needed things, but when a nurse roughly yanked me over in the bed, hurting me to some degree, and then gave no sign of empathy or remorse, I knew I did not want to remain in this hospital another minute. I spoke with the caseworker and said I REALLY needed to get home, where I could get more rest and get back to normal. She suggested I try staying one night at the rehabilitation center and receive my physical therapy there, and I agreed to try it one night, knowing I probably would still rest better at home.
Robert came up later to pick me up; the first time they actually bent the covid-19 rules about visitors. I thought I was going home, but in the meantime an opening presented itself at the UC Irvine Medical Center, where their technology was more advanced for cases such as mine. But being under the influence of the opioids, I didn't fully understand WHY I was going to this other medical center. Was it a tour? A research study? Robert didn't really explain it all, he just said I needed to go there and an ambulance would be taking me there. I felt angry and disappointed. I didn't even have any shoes to wear, and no idea what I would be doing and where to go once I arrived! Robert wasn't allowed to go with me, either, adding to my uncertainty. I could hardly speak, I was so upset.
Beautiful bouquet from my family
I had an interesting ride in an ambulance to the UC Irvine Medical Center. Once I recovered from my angry feelings about the whole situation, I decided to sit back (well, lie back) and enjoy the trip while making some conversation with the two paramedics who transported me. They seemed to enjoy their jobs, one of them commenting that "no two days are ever the same."
At last we arrived at the medical center, and I was wheeled into a small room which reminded me of the offices in the old science building at Cal Poly Pomona. I waited there a short while before one of the professors/doctors came in and gave me a brief form to fill out. The way it was worded, I was a little confused as to whether I was applying for a job or agreeing to be part of a research study. He then told me I could put my feet up on the table if I wanted to, which seemed sort of unusual. I felt like I was still experiencing the effects of the opioids, where real life was merging with dreamlike sensations.
Another person, who I thought was a student but turned out to be a doctor, came in afterwards and had a few more forms for me to complete. She also said she had to look through my purse for any "contraband," which most likely included weapons, drugs/medication, and even vitamins (they wanted patients to take their own prescribed supplements). For some reason I didn't care for this doctor; she seemed to have her own agenda. I wondered if she was possibly was working on a research project of some sort. She just didn't seem to have the empathy that I valued as important in the medical field. I felt very guarded around her.
Robert texted me a few times, and finally I was able to answer. I still was not happy that I had to be in yet another hospital, but I know he was hoping I could get better treatment here and be healed. Poor guy, he had been through a lot with this whole misadventure; more than I even realized at the time. Both sides of the family had thought it was the end for me based on feedback from the doctors early on at the other hospital. I had no idea I was creating such turmoil for everyone while I was still unconscious...and had no idea Robert's sister Silvia started a "prayer group" on the phone to share positive thoughts. Family members and friends had given us gifts of things that were much needed, as well as uplifting cards and messages. I'm not going to list them all here, but they know who they are and hopefully know how much they are appreciated. Feel the love! All that good energy must have helped, as I came out of it intact.
Another person, who I thought was a student but turned out to be a doctor, came in afterwards and had a few more forms for me to complete. She also said she had to look through my purse for any "contraband," which most likely included weapons, drugs/medication, and even vitamins (they wanted patients to take their own prescribed supplements). For some reason I didn't care for this doctor; she seemed to have her own agenda. I wondered if she was possibly was working on a research project of some sort. She just didn't seem to have the empathy that I valued as important in the medical field. I felt very guarded around her.
Robert texted me a few times, and finally I was able to answer. I still was not happy that I had to be in yet another hospital, but I know he was hoping I could get better treatment here and be healed. Poor guy, he had been through a lot with this whole misadventure; more than I even realized at the time. Both sides of the family had thought it was the end for me based on feedback from the doctors early on at the other hospital. I had no idea I was creating such turmoil for everyone while I was still unconscious...and had no idea Robert's sister Silvia started a "prayer group" on the phone to share positive thoughts. Family members and friends had given us gifts of things that were much needed, as well as uplifting cards and messages. I'm not going to list them all here, but they know who they are and hopefully know how much they are appreciated. Feel the love! All that good energy must have helped, as I came out of it intact.
UCI Medical Center
It turned out that this "office" was actually my hospital room. It was comfortable enough, and the staff seemed efficient and professional. There were all the usual tests, with the expected poking and prodding. I didn't receive much of a dinner as I was scheduled for an MRI the following morning.
The MRI was painless, but a little disconcerting. The worst part of it, for me, was not being allowed to have any food beforehand. I was bundled up on a gurney, strapped in, and covered with a heavy mat of some sort. I'm not going to explain all the medical and technological aspects of the procedure - this information can easily be obtained via google if one is interested.
The gurney moved slowly through a "tunnel of light," and as I entered the chamber I heard what sounded like crazy drumbeats on all sides of me. It made me feel like I was on an African safari, or perhaps had stepped back in time into a wild disco scene. I had to close my eyes; it made me dizzy and a little queasy to try and experience this scenario on an empty stomach.
After about 45 minutes this adventure was over and I was wheeled back to my hospital room. I couldn't wait for breakfast to be brought to me - I was famished! But I had to wait a bit as it was now lunchtime. Whatever...just bring on the food!
The UCI hospital's cuisine was infinitely better than most hospitals. They have a special food service department that provides a picture menu to the hospital patients, allowing everyone to choose from a variety of taste-tempting dishes, all tailored to the dietary needs of each particular person. A breakdown of sugar, sodium, fat, and all other essential nutritional facts was listed alongside each selection. Such an innovative, yet sensible idea! Patients were bound to have a better appetite when allowed to make a choice, and a choice that was healthy at that. I enjoyed a number of tasty meals, from Mexican to Chinese to a simple turkey sandwich. But the highlight, in my opinion, was their delicious blueberry pancakes. Best I ever had!
Soon I was moved upstairs to another room which I shared with another woman, Mary. She was a dark-haired, somewhat feisty woman in her mid-fifties who had recently lost her husband. But irony of ironies, this was another patient who suffered from extreme pain throughout her body, causing her to cry out at various times around the clock. The nurses were quicker to respond at this hospital, however, but perhaps this was due to our room being right outside the nurse's station.
I talked a little with Mary once I felt she was in the mood for conversation. I told her a little bit about my condition and life, and she shared with me that she had been in and out of the hospital countless times in the past ten years for pain issues they couldn't resolve. She said she felt like a professional patient. She had no children but was raising her sister's child as her own, a three-year-old boy who called her "Mamo." She would cry every time she spoke to the child on the phone, assuring him she would be home soon and they would have ice cream sundaes. In truth, she didn't know when she would be getting out and had a long road ahead of her with physical therapy.
Speaking of physical therapy, I was overjoyed when a physical therapist appeared one morning at my bedside. I still was unable to walk without assistance, and wondered if I would ever get back on my feet again. So the start of physical therapy brought great hope to me. I remembered how my father did all the exercises recommended for him after he broke his hip and the steady progress he made. I kept him in mind as a constant inspiration, although I knew not to expect immediate results.
The therapist, Mike, showed me some simple foot and leg exercises to start out with. To the average person, these exercises would seem to be nothing much, a lightweight drop in the bucket. But after being confined to a hospital bed with little strength in my legs, they were a healthy challenge to begin with. One exercise involved moving the foot back and forth vertically ten times. Then I was to move each foot in outward circles for the same amount of times. Then, lying on my back, I was to raise my legs slowly into the air and then lower them gracefully back down. This last exercise was similar to a yoga move I remembered from long ago. In that yoga exercise, the person would hold the legs for five seconds just above the bed before slowly lowering them, which was great for the calves as well as the lower back.
Mike gave me a few more exercises to try before helping me to my feet. He put a safety belt around himself and me for stability, and then observed how well I could stand in place, which was rather unsteadily. He then had me walk carefully to the hospital room door and back. I was glad my roommate was sleeping, because I felt I was shuffling along uneasily, like the old man Tim Conway used to portray on "The Carol Burnett Show," with comic effect. But in this case, I really didn't want anyone to laugh.
Mike told me I did a good job for my first day, something they undoubtedly told everyone to keep them motivated. He told me to practice the exercises in bed as often as I could, and that he would be back again the nest day to build on what I had learned today. And back he was, before I'd even eaten breakfast or adjusted my attractive hospital gown (Ha! attractive if you like the circus tent look). I told him I thought I'd be more ready for the exercises after I had at least eaten and got myself together, and he agreed to come slightly later the next day.
By Day 5, definite progress had been made! I was able to walk with a walker out of the hospital room, down the hall and back again. I was reminded to keep a steady gait and to not hunch over too much, which wasn't always easy to do. When I felt unsteady walking, I tended to hunch over more, which in turn would make my walking unsteady and on and on in a vicious cycle. But the fact that I could walk with a walker and had more flexibility and strength gave me a world of confidence. I loved being able to see some progress, slow as it was.
I felt bad for my roommate Mary, who refused physical therapy because of her pain. She said she admired me for sticking with it, but didn't feel she was ready for it yet. And perhaps she wasn't. She had swelling throughout her whole body, whereas my swelling was mostly on my arms and hands. They eventually did an ultrasound and found she had numerous clots which were causing the swelling. She wasn't happy to learn about the clots, which untreated may travel and become lodged in the arteries, yet she was grateful to find a possible answer for all the pain she had been encountering. One step towards a healthier life.
As for me, I was apprehensive about the possibility of clots as well. The medical staff didn't seem too concerned about my intermittent swelling, but one doctor finally ordered an ultrasound to "rule out any DVTs" (deep vein thrombosis). Soon after the ultrasound, my nurse, a man of Hawaiian descent with a magestic tattoo of an eagle's wingspan across his arms, informed me that my ultrasound was clear, no clots. Yay! One less thing to worry about at this point in time.
The care I received at UCI was preferable in many ways to that at H. Hospital. Staff was quicker to respond, as I mentioned previously the food was better, and of course this medical center was highly-rated for their leading technology and treatment for cancer and other serious conditions. I had several nurses who went out of their way to make me feel comfortable and at ease. I can't remember all of their names, but the ones who come to mind are Erwin, the tattooed guy originally from Hawaii, and Mary (yes, another Mary), one of the night nurses. Erwin was careful to explain all procedures to me, and also gave progress updates to Robert, who greatly appreciated them since no visitors were allowed. Mary had the empathy to sense when I needed my bed tray brought closer, as I still had weakness in my arms and had trouble moving it by myself. She would bring me a container of ice chips when I needed it most, and was mindful not to yank off my arm dressings too quickly, thus avoiding pain and excessive bleeding. She shared some Bible verses and apps with me, not in a pushy way but rather as a souce of comfort at this sometimes disquieting time. Hats off to the nurses who do so much! They literally put their lives on the line every day, and I can't express my gratitude in words.
I appreciated all the calls and texts from family and friends while I was hospitalized. My sister Susie thought I might be lonely or bored during my sojourn and called frequently, but in truth I was neither. Between nurses checking my vitals, being sent downstairs for various tests, meeting with my care team, having meals, and carrying out my physical therapy, there was no time to feel lonely, let alone bored. I preferred texting over talking on the phone since it was often difficult to hear due to the noise level. One time my other sister, Lynda, called just as lunch was being served. Rather than promise to call her back and later not be able to follow through, I put her on speaker phone and we conversed while I had my lunch. I realized that sometimes people wanted to hear my voice as a way to gauge my strength and recovery.
In retrospect, should have known things were serious when my daughter Tinya called me every day, starting from the day I was first coherent at the other hospital. Under normal circumstances we'd talk once a week, but the current situation was definitely not "normal." She also called the hospital every day for updates on my condition, and she and Robert in turn relayed this information to everyone else. Such teamwork! It's a shame some of the doctors told them that I might not make it, or that if I came out of it I might have brain or organ damage. I know the hospital staff just wanted to be honest, but it seemed off the mark to make that assumption and present it in such a negative light. But what do I know...all the most serious things happened when I was unconscious.
As usual, I had trouble sleeping at night. The hospital bed I had didn't help matters any. As soon as I was comfortably dozing off, it felt like some invisible hand started working the adjustment controls, causing the bed to go up and down and sometimes from side to side. It freaked me out the first time it happened...I thought a nurse or someone else had come in to adjust it. But there was no one there! I called a nurse in to check, but the bed was behaving normally by the time she came in to see. Had I dreamed it? The next day I noticed the bed acting up again and asked Erwin about it when he was on duty. He informed me that it was a "pressure spot bed" and that it adjusted to your body's pressure in an attempt to make things more comfortable. NOT. It obviously had the opposite effect on me, waking me out of sound sleep at times. But there was evidently no other bed currently available, so I agreed to put up with it a couple more days.
The health care team came in the day before my discharge to let me know my status. They didn't mention the "C word" much, maybe so as not to be too upsetting to me. They told me the cells had spread to the bone and they weren't sure which course to take. One doctor, Dr. S, said sometimes a limb might be amputated to prevent further cancer growth, but he didn't feel this was a good option in my case. He said once all the test results were in they'd have a better idea what to do next. In the meantime, I was to eat healthfully and try to gain back some weight so I'd be in a better position if I started chemotherapy, as many people lose weight if they experienced nausea and vomiting. The thought of chemo scared me more than anything else, seriously. I was afraid it would do me in.
But I didn't dwell on any of this as I prepared for discharge. They checked to make sure I'd have someone at home to help me (Robert), and observed to make sure I could perform simple operations, such as dressing myself and brushing my teeth. I had adequate strength and mobility with the walker to get around the house and had a good understanding of the aftercare instrctions. So...time to go!
It was a happy day when the nurse wheeled me downstairs where Robert was waiting with the car. I was so glad to see him! It seemed like it had been an eternity. The world looked fresh and vivid to me, and indeed, this was a fresh start as I began my post-hospital life. I couldn't obsess over the "what-ifs" right now; my main thought was to establish some semblance of normalcy as I returned home. Home! The words to one of the Beatles songs rang through my head: "We're on our way home...we're on our way home..."
There's no place like home!
Aftermath
Perhaps I should have made note of my progress day by day upon my release from the hospital, but I didn't want to bore everyone! There hasn't been a lot of post-hospital drama, and that's a good thing.
Coming home was a joy. Robert took off a week or so to take care of me, which was really helpful when I couldn't walk very well or get up from a chair without assistance. Jody came out and brought a walker which worked better than the one the hospital sent. She also brought some medical supplies they had from Mark's recent convalescence. The new bed and other items from Robert's family were a godsend...THANK YOU!
I received many beautiful cards, but the one pictured above holds a special place in my heart. My little grandson, Indie, created it! It includes some of my favorite things: butterflies, turtles, frogs, and flowers...I just love it.
Before I started my treatment, I had several "at the gate" visitors. Paul, Joanie & Susie on one occasion, and Uncle Paul, Pat, Danny & Sandy on another. It was great to see everyone, and it gave me quite a boost to visit with them, even if rather remotely. Doctor's orders!
I was a little nervous about starting immunotherapy. The oncologist explained how it worked (with the immune system to target the cancer cells and heal from within), and described some of the side effects I might expect. I was especially concerned about nausea and vomiting; I had lost so much weight that I certainly couldn't afford to lose any more. He recommended I take Zofran, an antimetic, one hour before my treatment to avoid stomach upsets. He also suggested eating foods like rice and yogurt.
The immunotherapy medication prescribed for me was called Erivedge (Vismodegib) which has been used since 2012 to treat basal cell carcinoma. I am happy to report that after two months on this medication, my side effects have been minimal. I've lost my taste for certain foods (how I miss pizza!), some joint pain, and just started having some hair loss. But no nausea or vomiting- yay! I still have a healthy appetite, but mostly crave foods like oatmeal and rasberry yogurt. Luckily those foods are good for me. :)
The downside of taking this medication is that I am to stay mostly at home and not see anyone - mask or no mask. During this time of Covid-19, the doctor said I needed to be extra careful as I am especially vulnerable right now. I can go to the drugstore drive-through for things I need but must avoid close contact with people and crowds. We did eat at a couple outdoor dining venues, but only when there were little or no people there. It's not easy sometimes, but what about this whole year has been easy?
Lynda made me these lovely masks, and the pillowcase behind it she made from an old shirt of my dad's. How special is that?
But Wait, There's More! April 2021
Well, it’s been a while. I guess I should’ve known things wouldn’t be that easy.
If this were a regular blog I would have been posting on a weekly or monthly basis, sending out updates, and maybe even generating income. Mine is none of those things, but rather a handy place to chronicle my experiences on the road to recovery.
November, December and most of January were pretty good months. I felt good! My CT scan results in November showed the nodules were disappearing or shrinking, with many down to half their former size. Liver and kidneys, heart and everything else were all fine. I was also fortunate in that my glucose levels, cholesterol, sodium, and other readings were in the normal range, with the exception of iron still being a little low.
Both my doctors were very pleased with the results. “I’m so proud of you!” my oncologist, Dr. M., said at my November appointment. “You’re coming along nicely. We’ll have to figure out what to do afterwards.”
Afterwards! Could it really be I might be getting my normal life back at some point? It was an optimistic glimmer of hope to cling to.
Although I still could not mingle with family or friends over the holidays (due not only to Covid but to my vulnerability while on this medication), I did have some “at the gate” visitors as well as texts, calls and cards from loved ones. I don’t really get sad being alone on Christmas, although sometimes memories of family get-togethers in the past will bring a twinge of wistful nostalgia. I also missed seeing my grandson Indie, who has a way of growing up too fast.
January 1st, New Year’s Day, we actually took Summer for a walk in the park! The park wasn’t crowded and of course masks were worn, as always. It was a beautiful, sunny day and we also took a drive on the outskirts of town, taking photos of orange groves and such. It was SO good to get out and feel halfway human again!
Around this time we managed to get Summer a good bath and then in to the veterinarian’s office for some overdue shots and a check-up. It was a little different experience waiting in the car while the assistant came out to get the pets, one by one, instead of the usual in-person office visit. But whatever works, right?
Sometime In January I started to notice symptoms of the right-side lymphedema which had been troublesome a few months back. Although my arm and hand weren’t swollen right now, my right breast still was (and had been all along, to some degree). It looked a little funny, with the left breast so small after my weight loss, and my right one so HUGE, like an overfilled water-balloon. But the looks of things were the least of my worries. The heaviness on my right side made my back hurt, and slowed me down when I was walking around.
I'd been having other ongoing discomforts, such as numbness and pain in my fingers, and severe muscle spasms in my feet. Ouch! Some of these spasms rivaled labor pains, with a few of them reducing me almost to tears. My sister Susie’s friend Susie, also a cancer patient, said she had good results with Thera-Worx. I’m skeptical about most things that people recommend, because they often don’t work for me or I’ll have some side effect from them. And I also have to be careful of anything that induces bleeding; even aspirin or certain muscle rubs can be problematic. But wow! Just wow! During one severe spasm, Robert brought out the Thera-Worx and the results were IMMEDIATE! The pain was completely gone! I couldn’t believe anything could work so quickly. The active ingredient in this product is magnesium sulfate, and although magnesium can be taken in pill form, I doubt it would have such instant results. I shared this gem of a product with my doctor, who undoubtedly has other patients suffering from the same spasms.
Aside from the expected side effects of the meds, my right arm was starting to hurt more. Also, the tumor site on my right shoulder, which had flattened during the time I had the favorable results, started to “bubble up” again, causing the time it took to change the dressing a little longer. I mentioned these things to the doc at my January appointment and he said he wondered if the immunotherapy had “stopped working.” He ordered another CT scan and a blood panel, and asked that I come back after that.
I wondered what could have caused the Erivedge to suddenly stop working. I certainly was trying to stick to the program. I wondered if missing four days of the meds around Christmas might have thrown things off. I always have to call for this medication on a month-to-month basis, and I especially made an effort to call earlier this time with the holidays coming up. So what happened? The medication was never delivered, with no notice about it forthcoming. I called to follow up on it and they said they "had no record of it.” What? So another one was shipped out. Second shipment...never received! Lather, rinse, repeat! I finally received the third shipment, FOUR DAYS LATE!
Dr. M. said he wasn't sure if missing the four days of treatment would have caused anything to go awry, but he did explain that when immunotherapy was working properly, it set up "roadblocks" or checkpoints to keep the cancer cells from getting through. Sometimes the body turns against itself and allows one of the sneaky cancer cells to push through or around the checkpoints, creating havoc within the system. Then something else must be done.
When I received the results from the scan, I saw that I had indeed been correct about the nodules multiplying and increasing in density. My first thought was, "Why me?" But I really had no time or inclination to fret or cry over it. I really do NOT like a lot of drama, and thus do not post all my personal medical information on social media. I know some people are able to get support from the masses, but I prefer to share such info with a select few. Why? Because people either overreact, as one person did: "Oh, NO! Oh my God, what are you going to DO?" Or they will start giving you tons of advice, mostly pertaining to diet, when often they aren't in any position to do so. "Don't have carbs!" "Don't eat meat! "Never have dairy!" "Avoid all sweets!"
Don't get me wrong. I appreciate information from people who have had cancer and wish to share what worked for them. Their views hold more water for me. Yet we must remember that each case is different. Mine is something of an anomaly...the doctors at H. Hospital said they had "never seen anything like it." An anomaly for sure, in that they did not even expect me to live. But somehow I proved them wrong, with huge kudos to the care I received in the Intensive Care Unit there.
My GP doctor said that I'm a "healthy person with an unhealthy condition" -- that condition being malignant basal cell carcinoma. I didn't eat wrong, smoke, or engage in any known carcinogenic activities. My mistake was most likely getting too much sun in my formative years, and not having the growth checked out early on.
So now what? Dr. M. wants to try another immunotherapy. This one will need to be administered via IV every three weeks. It is the same type of immunotherapy successfully used on Jimmy Carter when he had melanoma in 2015. And he's in his 90s now! I guess if it's good enough for him, it's good enough for me.
That's not to say I don't have some trepidation. Of course I do. But it's necessary to move forward in spite of it.
As always, I am grateful to my family and close friends and confidantes who have been with me on this ride. I appreciate the love, cards, calls, prayers, good vibes, and thoughtful gifts. I appreciate YOU!
Stay tuned...
First Keytruda Infusion - May 17, 2021
Today is a strange anniversary. It was one year ago today that I was rushed unconscious to the hospital and all the fun started. I'm celebrating that anniversary by going to Newport Beach for the first Keytruda infusion.
Before the infusion, we met with the doctor briefly to go over some concerns I had; primarily that I had been experiencing an irregular heartbeat on several occasions.
It wasn’t a pounding heartbeat or a racing one, and didn’t seem to be related to anything I was doing at the time. When lying down before going to sleep, I sometimes put my hand over my heart (don’t ask me why I do this, because I’m not really sure myself). Normally my heart beats steady and true, regular as anything. But one night I noticed my heart beat maybe four times and then missed a beat. What? I kept my hand on my chest and continued to monitor, and then felt one - two - three - four - five - six - seven beats and then another skip. Hmmm! Further monitoring revealed more skipped beats with no apparent pattern. I wasn’t sure what to think.
This happened on several days, with no other health or physical/emotional incidents leading up to it. Could it be a delayed reaction to the Erivedge (which I would be discontinuing when I started the Keytruda)? Of course I looked online for possible answers, and was mostly reassured that heartbeat irregularities were often nothing to worry about.
All the same, Dr. M. ordered an EKG to be done before I proceeded with the infusion. And medical insurance being what it is, we had to wait quite a while before it was approved. “The waiting is the hardest part…” Ain’t that the truth, especially when a person is already apprehensive about a whole new procedure.
But eventually it was approved, the EKG was performed, and the doctor said the readings came out “perfectly normal.” Go figure!
The Infusion Room was much different than I expected. I was expecting maybe a clinical, off-white setting of cubicles containing hospital beds with IV tanks and medical equipment alongside them. Instead, comfortable recliners in cool earth tones with handy tables and other amenities was the setup here. The overall ambiance was one of peaceful relaxation, and the patients did not appear to be stressed or in any discomfort. This caused me to breathe a big mental sigh of relief.
"Everything looks pretty chill," Robert remarked, echoing my thoughts. I was glad he was allowed to come in with me during the treatment; it made me feel much more at ease.
The clinical assistant read me some information about the possible side effects from Keytruda, the most common ones being fatigue, anemia, itching, nausea, rash, decreased appetite, hyperglycemia, hyponatremia, and a host of others. I tried not to focus on these possibilities but rather on my eventual healing.
I was introduced to Rosemarie, my nurse-technician. She seemed a very competent as well as caring person, and answered any questions I had. She also asked if I’d like juice or water or maybe a snack. So hospitable! I felt like I was a passenger on an airplane for some reason. Cocktails, anyone? How about a Mai Tai?
She put a saline rinse in my vein first, and shortly thereafter began the Keytruda. I didn't feel a sudden rush of warmth or really anything much at all, and the whole process actually went very smoothly. Rosemarie was a pro, and I felt confident in her hands. Dr. M. came by a little later to check on things and asked how I was doing.
"Much better than I expected!" I replied, most sincerely. "Rosemarie is great."
"We wouldn't give you any bad stuff," the doctor said, in that inimitable jovial-sounding voice of his. "You'll be just fine."
I wish I could say that I experienced no side effects from the Keytruda infusion, but that wouldn’t be accurate. The first thing noticed was fatigue. If I thought I’d become a lazy slacker previously, that was nothing compared to how I was the first week or two after the infusion. And weak…with little energy whatsoever.
I lost much of my appetite. I didn’t feel really nauseated, thank goodness, but most foods had little appeal to me and it was tiring just trying to eat them. I managed to shovel down some oatmeal with dates and blueberries in the morning but didn’t enjoy it the way I usually did.
Meats or anything greasy tended to turn my stomach. I’ve never been a big meat-eater, but with the low iron count I was supposed to be eating more meat, eggs, dark greens, and other iron-rich foods (don’t send me a list of these; I already have several, thank you). It was difficult to do this right now, and I hoped the iron supplement would help tide me over.
I just wanted to drink a great deal of water and have ice chips throughout the day. I had such a dry mouth! I knew sometimes craving ice was a sign of anemia, and I hoped that wasn’t my situation again.
ITCHING! That was the worst side effect for me. It started on my right arm, which was already swollen and itching from the lymphedema. I also felt extreme itchiness on my back and sometimes scalp. It was maddening! The medical office suggested some over-the-counter remedies which didn’t do that much, really. Instead, I found ice packs and damp washcloths to be more helpful.
It was also an exhausting time because our dog Summer had a recurrence of the vestibular disorder she experienced almost two years ago. She had trouble with balance and walking, and refused to eat her dry food. She also had intermittent incontinence and diarrhea. Very difficult to deal with, but I’m SO grateful Robert was there to carry her outdoors, to encourage her to walk, and to do all the things I couldn’t at this time. He's a godsend!
I was feeling somewhat better by the third week…actually the day I went for my second infusion. The doctor was concerned because my bloodwork showed low iron levels and anemia again, and suggested a blood transfusion. Oh, no! I know I’d had several in the hospital when I was unconscious, but surely I didn’t need one again! Grr…grumble…bumble.
