Friends

"The only way to have a friend is to be one."

- Ralph Waldo Emerson

Today was a great day. Why was it so great you ask? It was great simply because I was able to have lunch with my brother Bradley and my dear friend Nicole. They both work as Pool Managers for the City of San Diego and today they teamed up to visit several pools. I called Bradley just to say hi and to my surprise he told me that he was driving around with Nicole running errands. I hadn't had lunch yet and it was getting to be about that time that my stomach starts to grumble in anticipation. After exchanging the typical "well I don't know where do you want to go", I finally suggested Corner Bakery in Mission Valley. I was craving their delicious Baked Potato Soup and I was sure that Bradley and Nicole could find something that they would enjoy.

I really enjoyed their company and it seemed to make the food taste even that much better. When we weren't putting the next bite into our mouths we were laughing. Laughter they say is the best medicine, but when it’s shared over a good meal amongst friends that is truly priceless. As we were walking towards the door Nicole and I spotted another friend and coworker of ours. Ariell had just sat down and the three of us stood there in shock for a moment at the serendipitous reunion of the three amigos. After exchanging hugs and snapping a quick picture for Facebook, we said our goodbyes and promised to bump into each other again soon. I walked out of the restaurant smiling ear to ear and thinking about how wonderful unexpected reunions between friends can be.

Completely stuffed from lunch I came home and decided that my next course of action should be a nap. I knew that I would be thankful I got in a little nap even if it was shorter than I might have liked it to be. I had about an hour to sleep before I needed to wake up, shower and head over to another friend’s house. This wonderful friend Lizzie lost her father about a week ago and her mother Karen was hosting a celebration of life for her late husband. The Scanlon's have been friends of mine for many years and I couldn't possibly look back at my youth without thinking of them and many fond memories. There was not a snowball's chance in hell that I was not going to be there for them. They had always been there for me so I knew it was the right thing to do.

When I arrived there weren’t too many people I recognized besides the family. A few people from our church and the nursery school where Karen taught, but most of the people were friends, neighbors, and relatives whom I didn't recognize. I walked up thinking about what I was going to say, but before I could finish my thoughts Karen spotted me out of the corner of her eye. For a split second she froze trying to figure out which twin I was. Before I could even get out a few words of sympathy she grabbed me and hugged me with tears in her eyes. I am a sensitive guy, okay fine I will admit that I am a crier. An undeniable sympathetic crier I could feel warm tears well up in my own eyes as she told me how happy she was that I was able to come to support her and her children.

I'm not always a good friend, but I try to be. Sometimes I can be a little phone-a-phobic, and scheduling time for friends sometimes gets lost in my chaotic life, but I try to be there for my friends when they need me. I like what Oprah Winfrey said when she said "Everybody has a friend who will ride in the limo with you, but a real friend is someone who will take the bus with you after your limo breaks down." These friends are there with you for the good times, but when it gets tough and I mean really tough, they are nowhere to be found. I really make an effort to not be one of those friends. I want my friends to know and I hope most of them do already that I will be there for them. Come what may I will be there. 

In closing, thank you Bradley, Nicole, Scanlon's, and all my friends for picking me up when I am down and for being there for me when I have needed someone in my corner. I wish I had the time and space to mention each one of you individually, but you know who you are and of the special place you have in my heart. From the words of a song I learned a long time ago at Curie Elementary School...

"A circle is round that has no end, and that's how long I want to be your friend." 

Be well friends. Cheers!                                                                                       

Crazy Does Not Even Come Close. My Week in Review

This past weekend was a rollercoaster of events that left me exhausted, on edge and emotionally drained. With everything that is going on inside of me and not knowing what will happen next, I am anxious and afraid. Saturday was a complete loss and Sunday wasn't much better. Monday brought on a new week and a new chance to start over again. Most people dread Monday mornings and I know that I too have had some rather gnarly cases of the "Mondays". This last Monday however, I wanted to be different. I was hoping that things would be easier or at least not as exhausting. When it rains it pours and unfortunately I would have no such luck.


Last Wednesday I did my weekly blood draw at the lab. Usually I get the results back the next morning or afternoon at the latest. This time it took until Monday to come back. I knew something must be up, and my suspicions came true when the Oncology nurse called me to give me the results. My WBC fell back down to 1.0 from 12.0 the previous week. Normal range is 4.0 to 11.0 and to do chemotherapy I have to keep it 4.0 or higher. The other number that is important to look at in the lab report is the Absolute Neutrophil Count or ANC. A neutrophil is a specific type of white blood cell that is responsible for fighting off infections and the higher your ANC count is the better chance you have of not getting the secondary infections common to patients undergoing chemo. My Oncologist has wanted my ANC to be 1.5 or higher in order to be high enough to be able to withstand the harsh toxicity of chemotherapy. My ANC value on Monday was 0.1 meaning I had less than 100 of these cells in my blood when you are supposed to have 1500 or more. The nurse on the phone knew how frustrated I would feel and I could tell that she was trying to muster as much encouragement as possible with her voice. She told me to continue to take my Neupogen shots that I have to give myself daily in my stomach. This helps to boost my WBC levels including the ANC. I told her I would continue taking the shot even though it’s one of the most uncomfortable things I have to do. I was stunned and still in shock mode as I said goodbye and hung up the phone. Just (expletive) great! I had hoped that I would be able to keep going with chemo this week because it is the only treatment that has brought results and relief from the pain. I knew I would have to share the news with Eric and my family, but I really didn't want to. It really sucks having to call them and give them bad news. Lately I have been calling with bad news more often than with good news. So that was Monday's events- not the quick, painless events I had hoped for.
 

Tuesday brought more challenges. As you are probably aware I have had a rather large tumor growing out of my left thigh. I have named it Billy to keep things light and humorous. While Billy continues to shrink from the chemotherapy treatments I noticed that there was additional swelling, redness, and pain not with Billy, but just to the left a few centimeters. I quickly realized that the tegaderm I had been using to cover and seal in any leakage was beginning to cause in grown hairs. I began to worry that the now infected ingrown hairs were not only infected, but infected with MRSA. I have had MRSA a handful of times and these spots started to look and feel exactly like the MRSA spots I had dealt with in the past. I knew what would be required to get rid this- a trip to the ER, possible debriding, and IV antibiotics. The only positive I imagined would be the dose of IV pain killers. Fun for a short while, but the relief would only be temporary. I knew it would only be a matter of time- minutes and hours, not days or weeks; until I was back in the Emergency Room and dreading what would come next.
 

I was able to manage the pain for a day and a half until finally it became unbearable. I had not had the typical fever associated with MRSA infection like I had during previous bouts with the infection. Until now. Drs have told me at 100.3 that I must go to ER and by 100.4 I had better be at the ER. I had taken my temperature during the night and had spiked to 100.9. I took some aspirin to break the fever, drank a glass of water and went back to sleep knowing that when I woke up next I would immediately have to get ready and go.

 
When I awoke to the sun shining through the slightly opened blinds it was all I could do to keep from pulling the blankets back over my head and hiding from the world. As easy as that would be, I knew that I had to get up and get moving. Morning person I am not, but bed head and all, I did exactly that. Actually my stomach needed my immediate attention, but I promised everyone that I was headed in the direction of the hospital. I wasn't going to sit in the ER hungry so I forced Eric into getting lunch. He chose Chipotle against the other close fast food joints we like to frequent around Mission Valley. His choice was just fine with me because of my ever-growing addiction to good, authentic Mexican food. I can honestly say that I have never met a burrito that I didn't like. After eating until we were both stuffed, we made our way over to UCSD ER and spent the next two hours in the waiting room. I will spare you the details of my visit, but nine hours later I was released. The Drs said that I could be released only if I went home and hooked myself up to the IV Vancomycin 3 times a day until the infection healed. I had hoped that this would be the case, but honestly didn't expect it because usually they find something obscure that doesn't look right or is a little off that requires me to be admitted into the main hospital. Another positive was that I had all of this medicine at home that was going to expire if I didn't use it. Being able to use it up and regain precious refrigerator space was in my mind a win-win.


So I have been doing the IV Vancomycin like instructed. Honestly, as much as it is a burden having to hook myself up three times a day for two hours each time, the antibiotic really does well against the MRSA infection. In only two days since going to the ER, my thigh is doing much better. I was feeling less pain, less swelling, less redness and no fevers to report. Hallelujah! I was going to follow up with the Home Healthcare Nurse through my UCSD chart online, but my unread lab results stole my attention. And when I finished looking over the results I felt so discouraged because my values were high enough to do chemo had I not had MRSA. The values were not anything to write home about, but the WBC and ANC levels were both within the normal range. This was terribly upsetting because I had wanted to have chemo because of how it helps the KS, but MRSA got in the way of my plans. Now I have to wait another week as the pain returns and my legs begin to swell again. At least there is some small consolation- this weekend is a three day weekend because of the Memorial Day holiday. I plan on honoring the brave men and women who fight to protect our liberties and our freedoms as American citizens. Enjoy the long weekend friends and be well.

 

 

Beth Appleton Brown

Beth Brown, the wise and wonderful mother of Eric (his words and mine), has an amazing ability. She has many abilities in fact; one in particular though has become evident in our conversations as of late. As close to the wizard from the movie classic "The Wizard of Oz" as one can be, she is my cheerleader, confidante, and friend. A cancer survivor herself and former caretaker for an elderly cancer patient, Beth has invaluable experiences and empathetic advice that one can only get from a person who has been there before.

Her ability to be completely honest and open about her own cancer battles has helped me process and share mine. What really amazes me though is the fact that she can say "You just don’t know...There isn't a universal timeline for cancer and at times you can die as easily as you can live." At first her words echo my feelings of helplessness and vulnerability. Feelings that are common to most cancer patients from time to time during their fight. Her wonderful gift allows her to disseminate a harsh reality while at the same time making me feel better. I am able to worry less, and I can hope more knowing that she has been where I stand and she came out on top.

I quietly told her today that I had made my decision to shave my head before the next cycle of chemo destroys it completely. I confessed my nervous apprehension towards the whole thing. She simply acknowledged how I felt and told me that it was "normal". She said I would not be "normal" if I didn't feel scared and vulnerable with everything that is going on. Now I don't know if I would go as far as calling myself "normal", but I understood what she meant. It was her way of acknowledging and honoring my experience.

As we said our goodbyes over the telephone I thought about what she said. She conveyed such empathy and grace. I concluded that these characteristics definitely spring from her faith through her words. Honest words of painful personal emotion that I had needed to hear. Her calming advice helped me feel like everything can be healed, but more importantly- I will be okay. Peace of mind during these trying times is certainly a gift if you are lucky enough to receive it. I got a little piece of mine back from her and it has made all the difference.

Thank you. Thank you, Beth for bravely sharing your experiences with me. Your invaluable advice has calmed and guided me through these uncharted waters. You will never know how grateful I am or how lucky I feel to have you in my corner.
 

Not Today, Carleton. Not Today.

My previous posting came shortly after my second dose of chemotherapy. Since then I have been up and down, in and out, and just emotionally drained. I was admitted into the hospital a couple days after this last chemo session. My doctor had come by the apartment to see how I was doing and to take some cultures of three lesions that had recently become painful and what I assumed to be some kind of infection. My doctor said that he thought they were infections and that I needed to go over to UCSD hospital and have an extensive blood work up to see if my counts would be high enough to fight these new infections or whether or not I would need to be admitted back into the hospital for IV antibiotics and care.

Unfortunately, the lab where I went to have my blood taken does not access ports and the technician had to take blood from my veins. I am not an easy stick and this poor woman had to stick me four times to get enough for testing. She missed veins in my elbows and on the back of my hand, and finally was able to get into the vein on the backside of my arm and shoulder. Ouch. My mother had taken me to the hospital and patiently waited in the car while I was inside being massacred by "Shakey" the lab technician. Nothing worse then a shakey, newly certified or less than confident phlebotomist.
When I came out to the car with my arms all bandaged with that flesh colored tape and gauze, Mom could see on my face the agony of the experience. She offered a smoothie or a shake, but uncharacteristic of my usual self I declined. We made plans so that she would take me to my next chemo treatment, but as things turned out she would not be able to share with me in that emotional experience.

My doctor called later that afternoon with some bad news. My blood counts were terrible (my WBC was 0.4 and normal range is 4.0-11) and around 4:30pm he insisted that I go back over to the hospital for admission as an inpatient. The repercussions of what he said resonated in my head and I quickly came up with a million excuses why I needed more time at home before heading back. Luckily, Eric while being a pit bull at times is deep down an empathetic and compassionate care giver. He said that I was going, but he gave me some time to pack a bag and to make myself a PB&J in case I didn't get dinner at the hospital.

We arrived back at UCSD and were triaged quickly and before I knew it I was back in a private room in the Emergency Department. I had been running a slight 100.0 fever, but while in ER it spiked to 103.2. Now, I hope that you have never had a fever this high, but if you have then you know what I mean when I say that I literally felt like my insides were melting. I was given medicine to break the fever and some extremely strong narcotic pain medicines. Just as I was starting to feel better a handful of doctors came into my room and gave me quite a scare. This is what Eric heard and I was asked. "Mr. Cannon we do not anticipate your heart stopping this evening, but in the event that this does happen, what are your wishes?"

Huh? What? My wishes? 

With tears starting to fall I was barely able to say that I needed to talk to my family first before I gave them an answer. The doctors said that would be fine, but I could tell by the pain and worry written across Eric's face that this was serious. More serious than I think either one of us had anticipated.  This was going to be rough... really rough on everyone.

Here is an abridged synopsis of my stay at Hotel del UCSD: Waking up to not one or two, but eight doctors rushing into my room because my blood pressure had fallen to a dangerously low level; a myriad of pills, IV's and reasons for doctors to generally make you ask yourself one important question.... Am I still alive?  Sometimes I didn't know. This made it hellish for those who came to see me, well that might be a huge understatement. With my relentless requests to get me the hell out of there, I begged, cried, pleaded, bribed, and ultimately it was to no avail. Eric quietly said, "Not today." That was all he had to say to shut me up, calm me down, and drop me into one of the few peaceful rests I was able to have while there.

After six days, and five really long nights, I was able to make an escape from hell and come home. Hallelujah! There is nothing like a hot shower and your own toilet. Enough said. For now I won't be going back to the hospital any time soon, but like Eric said "Not today."  I have been set up to receive IV antibiotics at home through a home health nurse (who by the way is a *expletive*.  He has been late, arrived without all of the right equipment, and no call/no showed. I have asked for a switch to another nurse provider who I am familiar and comfortable with, but I haven't been able to make that happen as of yet.

It has been rather emotional to have to get into the routine of three times a day, eight hours apart to hook myself up to my medicines. With a tube dangling out of my chest and a rush of cold liquid painfully entering my veins, my body, my being. When put in those kind of terms, who wouldn't be overwhelmed? I stall as much as I can, but inevitably my conscience or Eric quickly reminds me that I need these medicines to heal and to recover. Like it or not, I have to do it. Just sit down, shut up Carleton, and get it done.

So here I sit writing this post hooked up to my IV and doing as best I can to fight off this gloomy sadness and angst I feel. I remind myself two simple words that someone much wiser than I once told me........

Not Today.

Not Today, Carleton.

Chemotherapy will resume next Thursday and until then I am enjoying feel better, feeling energy and reserves that haven't been within me in a long, long time. That is good, even hooked up to this pole and in slight discomfort, life is good. I am thankful and very blessed to be here, be alive, and be home. Til next time be well my friends.

CJ

Jerry, KitKat Bars, and the Beauty of Hope

I had chemotherapy yesterday and took it like a champ. Actually, I slept through most of the awful part thanks to the "pre-meds" I received. The cocktail of Benadryl, Pepcid, and Zofran is greatly appreciated by most patients including myself, in UCSD's oncology infusion center. 

Yesterday I was excited to see my new friend, I will call him Jerry to protect his privacy, again this week with his signature possession, chocolate candy bars. You see Jerry has been fighting Multiple Myelomma for 13 years undergoing many of the same treatments and procedures that i have had to. This is also the same cancer that my grandfather, Roy B. Cannon Jr., courageously battled for 8 years. Even though grandpa is gone, you would not believe how good it makes me feel to see Jerry fighting and beating Myelomma's horrific destruction. Jerry and I have become an odd friendship, he is a mid-sixties, choc-a-holic, Harley-Davidson riding hippie. However,  our friendship stems from something much deeper than what appears on the surface. We both like, um, well fine, we both LOVE KitKat bars. 

(Geez! I'm going through hell here. At least Let me enjoy my damn candy bar!)

More importantly though is that we both have an inner strength that comes from going through the terror and tragedy cancer brings. I am still finding mine and figuring out how in the heck to positively use it, but Jerry is a good friend and a good example to follow.

It was not a great night last night. I have had a new reaction to the chemo medications arise and that is a terrible metallic taste in my mouth that will not go away. Imagine sucking on a quarter or a few quarters and I'm guessing that is pretty close to the taste I experienced. Not the most pleasant sensory experience, but it could be worse. Much worse I suppose.

Diarrhea and hot flashes have already started while I remain hungrier than ever. Sometimes I just need some comfort food at 3 am to help me get back to sleep, even if only for an hour. I had a bowl of Raisin Bran cereal  (bad idea for someone with the runs) and a PB&J. Now that its light out I crawl out of bed to make myself some breakfast. I am having macaroni & cheese (to combat my runs) and another delicious PB&J. 

Oh thank goodness for PB&J's. 

Well I will not bore you or gross you out with more details of my wacky bodily functions, but I did want to leave you with these final thoughts. My hair has started to fall out. Not all at once, but slowly a few strands at a time as if to torture me even more than I already am. I am greatly saddened by this, but with "sad" there is always a "happy". My "happy" was looking down at my legs, the tumors, and the ugly reality of cancer and seeing the first glimpses of improvement. Nothing drastic yet, but enough to give me the hope that my cancer has taken away from me. I know it has only been two doses of chemotherapy, but then again it has ONLY been two doses. Who knows how much better things will be after four, six, or eight doses? This hope is what I desperately hold onto (besides Eric of course!) and think about when the chemo side effects become too intense.

HOPE, that amazing gift from God, sure is a WONDERFUL thing.

Facebook status update: Port-a-cath

I am recovering well after having a port-a-cath placed in my chest this afternoon. I am definitely sore, but glad that having ivs started, blood drawn and chemo infused will not be the painful experience its has been lately. I need to thank Eric Brown who rescheduled his whole day at the request of my doctor so that i could have this procedure before thursdays next chemo infusion. Thank you for your sacrifices. I also must thank Beth Brown, eric's mother and my cancer cheerleader, for her calming words and guidance through out my treatments and procedures. To my own family, thank you for understanding and for answering my frantic calls and worried text messages. Lastly, friends i want to say thank you to you. If i could put you all in here specifically i would, but since i can not please know that i am deeply grateful for your compassion, your humor, and your help. It is these gifts that help me get up and fight everyday. I Love you all and each of you remain in my prayers.
CJ

A great gift from Michiyo

Yesterday I got the best gift, but it didnt come with shiny paper or a bow. It was a friend, a dear friend who showed up at my doorstep. She simply wanted to help me however she could knowing there was probably laundry to do or a kitchen that had not been cleaned in awhile. She was right, but the gift I received was not just a clean kitchen. It was knowing that when life sucks (I think we'd all agree dealing with cancer and chemotherapy sucks) friends will be there to lighten the load and lessen the burdens we carry. What an amazing gift! Michiyo Okamoto you're an amazing friend and im blessed to have you in my life. Thank you for your help yesterday and for being there for me. I hope you know how much that means to me.