Reality Check

This may sound a bit strange after all that has transpired, but on Wednesday, March 17, 2010, although my diagnosis has been out in the open now for 2 months and 15 days…It hit me…and I realized, I mean truly realized that I have Cancer. How is it possible that I have been through all of the steps and just now can admit to myself, that I have Cancer?

After undergoing a painful biopsy and the 8 grueling days awaiting the results, receiving “the call”, scheduling appointments for and completing a CT Scan and an EKG; meeting with the first Head & Neck Oncologist to determine a plan, going under anesthesia for a pre-op exploratory procedure, taking a leave of absence from work, moving from one end of the state to the other to move back in with my parents while undergoing treatment; sitting in on 2 more consults to find the right surgeon, a blood draw to check my cell count, a chest x-ray, 2 more blood draws to ensure the correct blood type in case a blood transfusion was needed during surgery, traveling to the Bay area for the surgery, spending the last evening with my family before the big day, arriving at the hospital at 6 a.m. to prepare for surgery, undergoing 2 hours of preparation for the surgery, walking the endless hall to the operating room, laying down on the ice cold table, going to sleep for 7 1/2 hours, feeding tube, 5 days in the hospital, a liquid diet due to the inability to chew and fully swallow, the long sleepless nights, the damaged speech, the endless telephone calls, texts, cards and gifts; one follow-up appointment with my surgeon and now this…my first meeting with the radiation doctor.

It’s amazing to think that God has designed our bodies to protect our brain, our emotions and our hearts during a stressful time by slowly dispensing truth at a rate that we can more appropriately digest the news. Can you imagine having to deal with all of the emotions at one time? In 2005, I earned a Masters Degree in Counseling Psychology, so it’s pretty obvious to me that I am working my way through the stages of grief. The stages include denial, anger, bargaining, depression and finally acceptance of the situation. In school, we learned all about it as applied to a person when there is a death of someone close to them. In my experience, grief surrounds us more often than we realize, and we have to learn to cope with all types of changes; changes in the form of a job loss, the end of a relationship, moving, empty nest, etc…these are all forms of loss with which we deal on a daily basis.

What astounds me; however, is the fact that for the majority of the past 2 1/2 months, I have spent floating in the “denial stage.” It’s not that I haven’t felt the pain or allowed myself to experience the feelings, it’s just that up until now, I haven’t really felt anything but a “let’s get in there and get’er done” attitude. I’ve been so caught up in doing and fixing that I haven’t fully felt sad or angry or depressed or a need to curl up in a ball and never leave my room.

But there I was on Wednesday, sitting in a room with a doctor who specializes in radiation, explaining all of the potential side effects of further treatment; the disturbance of my taste buds, developing sores in my mouth, the destruction of my salivary glands, potenial dental problems in the future, another feeding tube, a need for a morphine drip because of the level of pain, and possible secondary cancer down the road…when it hit me…I was pissed off and scared beyond belief! And I was immediately overcome with a deep sadness and an immense feeling of loneliness. The tiny room was filled with the doctor, myself and my parents, but it felt as if there was not a person in the world who could understand the agony of my situation. This obviously is not true as everyone on my online support group can testify to their own personal struggles with this unpredictable disease, but it felt that way, nonetheless.

The confusing thing about my current situation is that from the pathology reports, there is no evidence of any further cancer, which we’re all grateful for; however, the reason the doctors are debating the need for radiation is that the tumor was situated directly on top of a nerve. The tumor was invading the branches of that nerve which apparently makes it a very aggressive cancer, and the nerve can act as a highway to other areas, including through my mouth, up my jaw and finally, into my brain. So, while there is no clear cut reason to do further treatment, by completing the radiation, the doctor is saying that it’s a more definite way to make sure that particular nerve has been cleared. The difficulty lies in coupling the side effects with my young age, and we’re receiving no absolute consensus, either way, from all of the physicians associated with my case. In addition, I have a fear that if I don’t pursue further treatment, it’s just a matter of time before it comes back, but I’m also concerned that if I choose to complete the radiation that I will not have that as an option if the cancer does re-appear.

So many questions, endless emotions and not enough answers, and at this point, there’s not really anyone who can make the decision but me.

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From the Inside, Part III

So, to recap my five days and four nights in the hospital, minus the awkward wardrobe malfunction, I was moved to a regular room for the second evening. It was a rather large, private room complete with a recliner that pulls out into a makeshift bed, so they allowed my mom to spend the night by my side.

Each morning, a group of residents would stop by to check out my tongue and to look at the two drains they had put in my neck. We would discuss my pain level and they would encourage as much movement as possible in order to decrease recovery time. It got to where I would look forward to their daily visits, because by Day 3, they had removed one of my neck drains and gave me hope that by the time I left the hospital, the other drain would be gone as well as the feeding tube. Their visits often felt like a scene from the hit television show, “Grey’s Anatomy” as each day, a new group of residents would join the head resident to check out the young patient who underwent surgery for tongue cancer and a neck dissection. They would hmmm and awww, and if the lead resident requested a light, they would all scramble to be the first one to offer their own special tool. My mom and I would crack up after they left, but I always felt I was in good hands.

The most interesting part of the day would always come during shift change. Without fail, the new nurse would come in and start bombarding me with all of these questions without realizing that I couldn’t say a word in response. It was the same thing every day…my mom would have to explain that I wasn’t speaking or eating through my mouth and would tell the nurse I am using a whiteboard to communicate. The nurse would then look at me and assess whether or not this was actually the case and then acknowledge that they had never used the feeding system that I was on and would have to get training. They would check my vitals, ask about my level of pain and then for some odd reason, they would pick up the room telephone and place it next to me on my bed, just in case I needed to make a call. The first few times it happened I felt extremely annoyed by their lack of analytical processing, but then it became funny to me and when they left the room, my mom and I would always laugh.

We quickly moved into a routine. Wait for the residents to make their morning appearance and then get down to the business of bathing. Prior to my surgery, I found a no rinse shampoo that ultimately saved my hygenic life! I’m the type of person who rarely goes a day without a shower, so the thought of spending 5 days in the hospital without being able to wash my hair or brush my teeth was almost worse than preparing mentally for the actual procedure! By day 3; however, even the no rinse shampoo wasn’t cutting it, so my parents and I worked together to wash my hair with real shampoo, careful not to soak my wound or make a mess on the floor. I sat in a chair while my mom poured the water from a pitcher and my dad caught it in a wash bin. Both my parents were amazing during this time, and in her usual fashion, my mom quickly learned the secret hiding places for the towels and the bedding, known only to the hospital staff, and she would make sure I was ready to face the day with a clean body and fresh linens.

After my bath, my parents and I would take a walk around the unit. My room had two doors. One opened to the busy chaos of the nurses station and the other opened on the opposite side of my room into a long hallway that was surrounded by large, floor to ceiling windows with an amazing view of downtown Oakland and a long distance peak of the Golden Gate Bridge. During the day it was too warm to walk the hallway, so we would venture out into the nurses station. At night, when it was cool, we enjoyed the fresh air and the beautiful view of the city lights.

Nights, for some reason, were always more difficult, and I rarely slept more than an hour before the pain would kick in or I would have to readjust my position (no more visits from Nurse Hottie & Orderly GQ, I was on my own!) Every 6 hours, I was fed a nutritious protein drink through my nose and then they would follow that with regular water. On one particular night, I had sent my mom back to the hotel because I was feeling better than normal and knew she needed to get some sleep in an actual bed. It figures that this would be the night they chose to switch me from morphine to a lower pain medication. I had a bad reaction to the medication. I tried to sleep, but I was sweating so badly that within a couple of hours, my entire gown and bedding were soaked through. The nurse, who was my least favorite of all, decided I was just hot and brought a small fan to cool me down. I had to beg them to change my sheets and clothing, but as usual I was unable to speak, so all I could do was write in big letters and tap the whiteboard to show her that I was serious. It did me no good, as she passed it off as poor air circulation in the room and went about her business. 8 hours from my last feeding, the nurse finally came in to give me my drink and patted my head and said I was all better. Needless to say, that was the last night my mom spent away from me. You can be assured that when the next evening rolled around and the same nurse was back, my mother was on her about my pain medication and made sure that I was fed on time!

Because the doctor wasn’t sure if I would be able to take the feeding tube out before my discharge, my parents had to learn how to feed me through the tube. They received two visits from an education specialist, and my father became quite the pro, but it was quite clear (to all of us) that we would rather not have to experience that outside of the hospital walls. Praise God, when Monday morning came, the doctor removed the second drain and reported that if I could swallow a liquid diet, they would remove the feeding tube. It took me nearly an hour to eat 3/4 of a 3.5 ounce cup of cherry jello, but I did it and they finally removed the tube! The removal…now that’s a treat I will refrain from describing, but let’s just say, I have a newfound sympathy for feeding tube survivors! With each step, I knew I was that much closer to going home! Finally, around 1:00p.m., the nurse called for a transport and a kind woman arrived with a wheelchair to take me to the car. I have never been so thankful to see the light of day!

While it was a rough journey, the men and women who took care of me every day were fantastic! My surgeons and the follow-up residents were beyond amazing, and I know without a doubt that God led me and my family to my physicians! Each time we have met with them, they act as if they have nowhere else to be and take all of the time necessary to answer our questions and calm our fears. Their hands were well prayed over, and I have all of you to thank for that! People who have never met me have been sending well wishes and kind words my way, and I will forever be grateful for that! When I arrived home, I had a package of books in the mail from a woman I have never physically met but who felt it important to send me some love. In addition, that first night, a UPS truck arrived with a beautiful delivery of tulips and a “Get Well” balloon from a close friend! A week later, another gorgeous bouquet of flowers from family in Mississippi was waiting on my doorstep following my check up appointment with the doctor. So, again, thank you for your endless support and prayers! The journey is not quite over yet, but I think I’ll save that for a different post…

From the Inside, Part II

Prior to the surgery, people would send me well wishes for a restful time in the hospital and a quick recovery. I often found myself chuckling at their statement, because for anyone who has spent even a minute in a hospital room, as a patient or visitor, you understand what I find so funny. Hollywood has done a great job of painting a hospital world where the patient is always “resting comfortably” without any problems. This is actually my 7th major surgery in 20 years so my family and I are well adjusted to the chaos and unrest found during the hospital stay. This trip was no different and that first night in the TCU was quite the experience.

As mentioned in Part I, no one was allowed to stay overnight with me while I was in TCU. My mom was devastated as she has been by my side through each hospital stay in the past, coining it “tradition.” The reality is, unless you have someone in your corner willing to be your advocate, often times, quiet patients aren’t always as well cared for as those with well oiled lungs. It’s not a dig on medical staff, because the care I received was excellent, it’s just how life works…you know, the squeaky wheel and all? Anyhow, knowing I wouldn’t be able to speak for myself brought my family some unease, but Kaiser had little sympathy for our unspoken family tradition and at 8:00 p.m. sharp, all visitors were asked to leave the unit. My parents had purchased a small white board for me to write down things I needed to communicate, so with that and the nurse call button close by on my bedside tray table, I was equipped to handle the long night ahead.

The first question you learn to answer in the hospital is, “On a scale of 1-10, how is your pain level?” My first nurse in TCU told me to never let my pain level get to a 5 without requesting pain relief as it takes longer for your body to fight the injury when you’re in pain. In addition, I had to personally ask for the medication as Kaiser’s policy is to not pass it out unless first asked. I also learned to up my pain level 1 number, mostly during the 4 p.m.-12:00 a.m. shift as it always took way too long to get the medication so by the time it was finally administered, I was generally well beyond the original number with which I started.

So here I am, attempting to get some sleep, but because it’s the TCU and I had just arrived, they would not close my room door. In between the loud machine beeps wailing from other patient rooms, the nurses chatted about nurse so and so with doctor “Oh no he didn’t”, so with the door wide open and nurses in and out on an hourly basis, checking my blood pressure, temperature, pulse rate and fixing my oxygen mask, sleep was non-existent.

Have you ever had one of those moments where you look back and you know it should hands down be the most embarassing thing you’ve ever dealt with? Well, that happend for me, night #1 in TCU, Kaiser Oakland. The funny thing is, for me it’s just funny. A little humorous event in the middle of a nasty situation. Sometime in the middle of the night, I remember the nurse entered my room. He was halfway through his shift and had explained that he was normally stationed on the 9th floor but had been asked to help out in TCU for the night. He was the same nurse from earlier when my parents and sister had been in to visit and my sister didn’t have to hear me verbalize anything to know that I was thinking, “Great, send in the most attractive male nurse you can find while I’m looking like a hot mess straight out of the latest Science Fiction Flick and can’t even use humor to talk my way out of it!” I had made eye contact with my sister and gave her one of those, “Fabulous! Just what I need!” looks as she connected the dots.

As his shift progressed, I quickly forgot his good looks, although I was praying my slightly elevated blood pressure wasn’t giving me away and allowed him to go about his business. At some point in the night, Nurse Hottie walks in the room, followed by a male orderly, who of course looked like he had just posed for GQ magazine and decided he would mingle among the common folk by doing some good will work at the local hospital.

Anywho…I digress. So, Nurse Hottie asked if I would like to be re-positioned on the bed as it was difficult for me to move myself. Through their conversation, I learned that this was Orderly GQ’s job to go around and help the patients shift when they were unable to do it for themselves. I hesitated at first, but the gnawing ache in my back screamed at me to just say yes. I agreed with a grateful nod. As Nurse Hottie tells me to relax and explains he’s going to roll me towards him, Orderly GQ looks on, waiting for the signal. All of a sudden, Nurse Hottie reaches up and says, “Excuse me miss, let me help you out there.” Completely unaware of what he was helping me out with, I realized a little too late as he gently pulled up my lovely hospital-issued gown, a gown that had apparently escaped its proper position somewhere during the course of the “patient shift” giving Nurse Hottie and Orderly GQ just enough of a peek of my womanly charm! Apparently Janet Jackson isn’t the only one who can pull off a “wardrobe malfunction!” Had I been able to talk, I’m sure I would have used sarcasm to pass the awkward silence of the moment and asked them for donations, in the form of a dollar bill, and yes, I do take 20’s! Needless to say, Nurse Hottie received more than he bargained for when agreeing to work elsewhere…there ya go, Nurse Hottie! Take that back to the 9th Floor! This is how we do it down in TCU! ūüôā

Nurse Hottie, his real name, Matthew, was gracious and beyond professional in an otherwise very vulnerable situation for me. And in a true poetic ending, Nurse Matthew, before exiting the room, turns and asks, “On a scale of 1-10, how is your pain?” Oh it’s a 10, Matthew…a 10! ūüôā

Keepin It Real

This blog was started almost 2 weeks ago, but I’m just now able to get it published….

From an early age I was taught to give all of my effort and energy to those with whom I come into contact and to give 100% of my best to my commitments. ¬†Because of that, I’m¬†used to doing a lot and I’m used to going at a fast pace. ¬†Up until a few months ago, when I was laid off as a Social Worker from Sacramento County Child Protective Services, my life consisted of non-stop chaos and never-ending thrills where the drama was constant and the stress was way beyond a healthy amount for even the most highly trained professional. On top of my career, I was actively involved in my church and several nights each week were spent either planning the next big event or meeting up with friends to share the realities of life with one another. ¬†Because I am such a people person, I find no greater joy than in building relationships with others and going beyond the surface of what is first presented to create long lasting connections. ¬†I crave that intimate contact and it brings such fulfillment to my life when my time is shared with those who are important to me.

From the time of my diagnosis, I have been physically exhausted, and this week, if we’re keepin it real, my emotions have fallen into step with the rest of my body. ¬†Some have asked me if I felt that way prior to learning the news or if it’s merely psychological. ¬†In all honesty, I have no idea. ¬†I’ve been tired since I started working as a social worker over 5 years ago and I don’t think it ever went away, so it’s hard to judge when or if things have changed. ¬†Nowadays, it feels like I wear out at an even greater pace which has severely affected the way I am able to “go” and “do.” ¬†It has been a difficult transition for me to understand that I have and will be experiencing even greater limitations in the near future. ¬†To make matters worse, the person that I used to be to others is no longer something I am able to offer and it is tearing at the core of who I am…shaking my entire identity.

It would be much easier for me to write something spiritually uplifting here or to “fake the funk” as my pastor so often says, but sometimes the truth isn’t neatly packaged into a quaint bumper sticker and it sure isn’t always easy to hear. ¬†The truth is, that this week sucked…and it sucked the big one! ¬†Emotions are running high, the original positivity that myself and those close to me shared early on is starting to crack under the fear of what could be…and with it, tempers are flaring, expectations aren’t always being met and feelings are getting hurt. ¬†The selfish child within me is screaming that this is the last thing I should be worrying about right now, that I need to save my strength for the battle to come, but my normal, grown up self realizes that my reactions and own fears are playing a part into how some of this conflict is going down. ¬†My normal, healthy, psychologically grounded self, is able to take a step back from the situation, look at the players and offer grace for what they might be going through during this ordeal. ¬†And then my selfish child rears its ugly head again, complete with the protruding lip and my adult self has to tell her to knock it off and go find some Tinker Toys to play with!

Then there’s the part of me that wonders if this is even an appropriate blog to reveal to the world. ¬†Afterall, perhaps it’s a bit “too real” for some to digest. ¬†Isn’t it so much nicer to click on a person’s link and be met with words flowing with flowers and sweet perfume, surrounded by an upbeat song about banana pancakes by Jack Johnson? ¬†Well, life isn’t always covered in syrup and at some point the roses stop blooming, and sometimes by hiding that reality we do an injustice to others struggling to deal with the circumstances they themselves are doing their best to survive. ¬†The truth of the matter is most of the time, the majority of us are hanging on by a thread, but somehow we manage to plant a lopsided grin on our face and meander through life as if we haven’t a care in the world. ¬†It’s as if by unveiling the truth, we will then have to acknowledge to ourselves that it does in fact exist. ¬†Well, my friends, Cancer is a reality and it very much does exist in my current world.

So, here I am, today…unveiling and acknowledging. ¬†I am imperfect. ¬†I can be self-focused. ¬†I am scared of what life will look like in less than a week. ¬†I am afraid that I will wake up one day during the midst of my treatment and the people I thought would be there will no longer deem me a worthy object of their attention. ¬†I am afraid that my selfish child within will say something incorrect in the heat of the moment and my adult self will have to deal with the consequences. I am afraid that after the surgeons finish what they need to do, that my smile and my eyes will no longer be the first thing that catches a persons attention.

But oddly enough, if we’re “keepin it real” I also find myself surrounded by a serious sense of peace. One that surpasses the fears and the what ifs and focuses me back on the journey ahead. In the midst of writing this blog, I heard a sermon this weekend talking about trials and the purpose behind them. Sometimes life is just what it is. There are going to be times that the questions outweigh the answers and the reasons why just don’t feel quite adequate enough to remedy the current situation, but there is hope. If I look around those in my life who have made it to the inner circle, there is not one person there who has not had to deal with some type of serious calamity. The hard truth is it’s easier to trust a person who has been through something of significance and has proven that they will remain someone of integrity through it all than someone who can only guess at what they would do in a certain situation. And oddly enough, It is somehow comforting to look at the crooked path of the person next to us and say, “If they can do it, I can get through this too!” So, on the days that the emotions of the “C” word are kicking my butt, all I am really able to do right now is throw up my hands in surrender and just know that God has a plan for every ounce of hurt that I am going through and every moment in the future when it seems like too much. And if one person can take a peak into my life and see that I can survive and find peace through the Lord’s grace, then I’ve decided, this journey will have to be worth it.

From the Inside, Part I

I am home. I am thankful. I am quite exhausted. Now the real work begins…Surgery on the 3rd of March, discharged on the 8th and a whole lot of uggghh throughout.

To bring it back, my parent’s and I drove to Oakland the day before the surgery in order to get some final blood work completed for the doctor. Just in case, I was to take a sample for the blood bank so that they could prepare me to receive a transfusion the next day if needed. My big sis, Lori-Lynn, aka, my mighty supportive force, my confidant, my biggest protector and greatest fan…flew into San Francisco International Airport that afternoon to meet us for the big event. We picked her up, and against my father’s greatest desires (he’s really a country boy at heart, he hates crowds and it was raining pretty heavily), but because he loves me even more than he dislikes the big city, we headed to the assumed crowded Fisherman’s Wharf for what was to be a quick stop for (the last meal before tongue is severely changed) clam chowder bowls but turned into an afternoon that was restful, rejuvenating and a whole lot of hilarious in between!

What I have always loved about my family is our ability to make good of every situation. That, and we have perfected the art of laughter..at anything…at anyone…mostly ourselves and each other. So as we journeyed to the wharf that day, we laughed at everything. We commented endlessly on what a beautiful day it turned out to be…the clouds parted for the remainder of the day and we were blessed with sunshine and a rare but beautifully clear view of the Golden Gate Bridge. And the crowds were non-existent, making the day actually tolerable for my father, some would look back and say he even found himself having fun! ūüôā We enjoyed clam chowder bowls from Boudini’s and then ventured out for ice cream at Ghirardelli Square, all the while taking in the sites and typical sounds of San Fran. We ran across the “bush man” a street performer (street sitter) who hides behind a large branch and screams at those passing by in an effort to make some quick cash because of his great ability to strike fear into the hearts of others. Of course, my family couldn’t just let that go…my parent’s decided, why should the bush man have all the fun? As he prepared for his next victim walking by, they walked up behind him and growled ferociously, causing him to jump back and laugh, knowing that he in fact now owed them a dollar. We looked on as a crazy person decided to swim in the bay, debating about whether or not he had a wetsuit on and then to my excitement fell upon the filming site of the show “Trauma” which just happens to be one of my favorites to watch! The rest of the afternoon, I kept praying, “God, if you wanna bring some paramedics into my life at this moment, I would not mind if it were the cast of Trauma. Amen.” I had to clarify paramedics from the show, otherwise, with my current luck, things could have gotten out of hand in a big way! Well, the paramedics never came, but the day was amazing and exactly what we needed. That evening, we met my grandparents at the hotel (4 nights paid for by my church family at the lovely Courtyard Marriott), who had traveled from Reno, NV to be there for the surgery. There was more laughter and even some tears, but more than anything, there was a whole lot of lovin and I went to bed ready to tackle what was to come. Sleep was futile that night, but the bed was comfy as I watched the minutes tick by, waiting for our early wake up call.

6 a.m. hospital arrival as it took 2 hours to prepare my body for the upcoming journey. The nurses were incredible as they poked and secured the IV’s and walked me through the next steps. My family took turns coming into the room and we shared last minute words of encouragement as I modeled my lovely hospital gown, my tan sock/booties and my powder blue hair cap. Shortly after 8 a.m. the nurse walked me to the operating room where they had me lay down on an extremely cold table as the surgeons went through their final check list and plan of attack. The next thing I knew, I was awake in recovery. Then I was transported to TCU, one level lower than ICU. Then I was waiting for my family to show up. I think we finally connected at 7 p.m. that night. And as they surveyed the damage (feeding tube, oxygen mask, drains hanging from my neck, large bandages around my chin and the left side of my neck), they also gave me the good news that the surgery had been a success and the doctor’s couldn’t have asked for a smoother procedure. They weren’t able to stay long as visiting hours were almost over and no one was allowed overnight, so I began my first hours of waiting, alone, but with a comfort from my God that I have never felt before in my 30 years of life.

Sunday Update #2

Just talked to my mom and dad. Kelli had a pretty rough night. They switched her medication and it made her really sick throughout the night. Then they were giving her tylenol for pain, which wasn’t really working to help the pain. This morning they switched her back to morphine. Please pray that they can send her home tomorrow with pain meds that will keep her pain to a minimum, and not make her sick.

Sunday Update on Kelli

The doctors have decided to keep Kelli in the hospital until Monday. They didn’t have the proper machinery available to send home with her, that she would need for the feeding tube. Kelli seemed relieved that her hospital stay was extended. She still has several tubes and drains that they will hopefully remove before they send her home. They will remove her stitches, as well. She has been pushing herself to walk the halls several times a day, even though this makes her pretty tired. She is working hard to recover!

Please pray for continual healing. Please pray that Kelli gets the rest she needs. Please pray for the results of the pathology report that she will receive hopefully on Monday, but as late as Friday. Please pray that they are able to remove the feeding tube and drain from her neck before she leaves the hospital on Monday.

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