Brotherly Love

My brother is a rock. He is my three minute older identical twin & someone who I don't always agree with, but respect more than he knows. Along with being a great Dad, and he is also an athlete (pool lifeguard & manager 10 plus years) and a gentleman...well he can be. when he wrars a belt i suppose. Ha! Just kidding B because in twin talk "Bradley" simply to big of a word to say so I abbteviated it to first initial and it stuck. B and C. There have been moments that have tested our friendship, communication, but these are moments and I love my brother very much. Who else can you call for a late night for a burrito and a beer but if not your brother? Are you with me? Brother is a loose term and does not imply blood relation as a brother is a friend, a helper, a confidante, a wingman or someone who simply watches out for you and has your back always. 

He has seen me on my best days and on my worst. He cried when I first showed him the Billy on my leg after I tearfully pulled up my shorts to show the ugly tumor.  He was there when in the hospital the morning my blood pressure crashed. Despite eight or nine white coated doctors all grabbing at me; it was my brother's hand that reached through the throngs of doctors to comfort me and let me know I was not alone.

We are close. I mean for goodness sake the guy did as I asked when I asked him to push as hard as he could on my groin and bladder to help me urinate when I was unable to make it happen on my own accord. That is love. That is my broham, Big B.

He spends the first and worst night with me in the hospital while: I restlessly toss and turn, the IV beeps its alarm unreasonably to loud to anyone in the vicinity and a rock hard chair as  bed. He had nurses walking past him all night, the bathroom light shining in his face all night, and yet as he snored I felt a peace and calm that I was not expecting. Maybe the knowledge that someone, my brother could and would help me if I should immediately require it.

I have missed a multitude of family gatherings, birthdays, parties, lunches due to cancer getting the best of me..  well actually it is those damn secondary infections and fevers forcing me into the hospital or out of large crowds. I was not to be kept me away, by anyone even a doctor, from my brother.

I make it a priority to see him as much as I can.  I call him daily to check in and say hello.  More importantly, it is my chance to say thank you and to remind him of how much I love him. Other twins can understand and appreciate the kind of bond we share.  Most people don't understand it is so much more than a built in playmate or sounding board luxury. Switching classes, being in the same class, and fooling even our closest friends by changing into each others outfit are some great memories I will always hold close & cherish. Friends for life as long as it is for either one of us. What I miss the most is his laugh from the bottom bunk-bed we shared for 19 years. Contagious and inviting as his outspoken personality his laughter could make me laugh for hours and have my sides aching before you would be able to control it. We fought too, brutal conflicts where neither one of us would give or back down. However, simple square footage and time healed many scars and cooled many hot tempers. Ultimately, it was an everlasting love and hope that there was absolutely nothing or no one that could break up our friendship. Love you B.

New chemo regimen and more thoughts

I am home from the hospital and doing much better. About time, eh?

Last Friday, my Oncologist, Dr. Reid and I decided to try me on a different chemotherapy regimen because of the side effects I was having to the Taxol infusions. Dr. Reid explained that the medicine, whose pharmaceutical name starts with a "B" (I can't remember exactly what it was called), was currently in the last stage of its clinical trial. It is generally prescribed to patients with a specific type of lymphoma and those with Multiple Myeloma. Like many of you are aware my Grandfather battled Multiple Myeloma courageously so when she told me this I immediately thought of him and started to cry. I wanted nothing less than one more visit with him, one more phone call, one more chance to tell him how much I love him and to thank him for watching over me and helping me fight through all of this "sickness stuff".

 

Cancer is unbelievably cruel in the most unexpected moments- like today when I struggled to reach a medicine bottle from up in one of the highest kitchen cabinets. I was able to touch the outside of the bottle, but without a chair I was not going to be able to reach it. With the amount of foolish pride I have, it quickly became evident that what I was reaching for would have to wait. I needed to come up with a better plan. I realized that the solution was to look for and find a better tool to grasp that damn bottle not climb up on a shaky chair. Enough about that damn bottle, it wasn't worth it anyways. Another cruel moment is when I have to carry things from one room to another. I have only one hand now to carry things as my other one carries the cane I must walk with. Think about it for a moment. What if you only had one hand to carry things with? It’s pathetic to me that now I always make sure my shorts or pants have pockets just in case I cannot grab or carry everything. It is these moments of hardship and struggle that I feel the urge to yell out my frustrations. Thankfully most of the time it stays inside the confines of my own head, but I will admit that these thoughts are generally proceeded by an expletive or two.

Like the coin has two sides, there is also other ways to think about cancer and what it entails. For example, this fight against KS has been really overwhelming both positively and negatively. I have been humbled by those who have taken time out of their busy days and schedules to help Eric and me out. Family and friends who bring over dinner when we are too exhausted to cook after our energies are depleted. The brave souls who have volunteered to do household chores like laundry and cleaning have humbled me with their compassion. Their willingness to do whatever is needed no matter how rudimentary or unpleasant is not lost on me. For instance, I have one friend who comes over to visit and for the last few visits she has brought her own yellow kitchen cleaning gloves. I have told her that she doesn't need to clean up every time she visits and that her company is just as cherished as her amazing ability to beautify a kitchen. These moments are just a few of the wonderfully humbling experiences I have had. It is in these moments that while my eyes may be filling up with tears, my heart dares to hope again for recovery and a cure.

 

Getting back to the new regimen and how I am responding to it, I believe that the shot makes me more nauseated than the infusions did and the length of time I feel crappy is longer. Conversely, it has not given me one neutropenic fever or secondary infection requiring hospitalization. So for now I will follow the advice of a doctor who knows far more than I do about cancer and specifically KS. If in a few months there are not significant and noticeable improvements in my condition I can always return to the Taxol infusions despite the volatile ramifications that it has on my health.

 

I don't believe I mentioned earlier when I will be receiving this powerful shot. Every Friday for three consecutive weeks I must get the shot. The fourth week of the 28 day cycle, I get a much needed recoup and recover week. Unfortunately for my poor stomach, the effects of the medicine are cumulative meaning that the third week of every cycle will be the roughest. Yippee!

 

Tonight I am feeling hot, tired and backed up. Sorry if that's too much information, but it’s the truth. Tonight as I say my prayers I will remember to thank God for the good things in my life and for the many angels he sends my way. Hope you all have a pleasant evening and the remainder of your week goes quickly and painlessly. Be well friends. Good night.

Another visit to the hospital and another scary close call

Friday July, 19th, my father brought me into UCSD Emergency because of a spiking fever around 102 degrees. I was also having quite a bit of trouble breathing due to the amount of swelling in my chest cavity.  To say i was feeling scared would be a gross understatement. I was terrified that this was it- my last and final trip to the hospital. After being triaged and having more vials than i could count drained from the port in my chest, i was moved into rm 24. Room 24 is a private room and one of the more spacious rooms in the ER. I was grateful to finally be in a room with just eric and my dad. After what seemed like an eternity pain medicine, specifically Dilaudid, was brought in and administered. Finally I felt some relief from the pain and suffering I had been feeling all morning. I could tell by the looks I was getting from both my dad and Eric that they were just as scared as I was although they would never show it.

I spent the next ten days having a myriad of tests, examinations and procedures. Two of the more notable procedures were the thoracentesis and my first ever blood transfusion.  The first required that a needle be inserted into the plueral space between the inside of my thoracic cavity and my lungs. Then the needle was used to draw out fluid. The doctor doing the procedure was a very nice woman who calmly and sweetly asked if I would like to see what they had extracted. I said yes and she showed me a bag full of what looked to me like cherry 7UP. The doctor said it was 1.1 liters of fluid. Thats a lot when think about it and no wonder i was having difficulty breathing. As soon as it was over i was breathing easier and feeling a lot better. The blood transfusion was also quite helpful. When my team of doctors said that my hemoglobin, red blood cells, hemocrit, and white blood cells were all too low I wasn't prepared to hear what they were going to suggest. A blood transfusion. I thought to myself isn't that for really sick people and I'm not one of them. After crying with Dad and with Eric over the phone both men were finally able to calm my apprehension and fears. Having the transfusion was no big deal especially after going through chemotherapy infusions. I was surprised at how successful it was and how much better I felt afterwards. Whoever donated that blood type A positive... Thank you. You helped me feel better and for that I am grateful.

I started a new chemotherapy medicine on Friday night. I could not tell you the name other than it starts with a B. The difference between this new medication and the old one is that the new medication is administered buy a shot under my skin instead of the long two and a half hour infusion through my port. So far the only side effect from the chemo that I have felt is some pretty powerful nausea.  I am not sure whether that was from the chemo or the Del Taco I had for dinner that night, but I'm pretty sure it was the chemo medicine because the burrito was the best tasting burrito I have ever had. I am really hopeful that we have finally found the right medicine. This shot is also used to treat multiple myeloma which is the cancer that my grandfather so courageously fought.  While I wish this chemotherapy treatment has been around while he was fighting I know that he is watching from above and smiling down because he knows this new medication is helping me kick cancer's ass  like he was never able to completely accomplish. My fight is for you Grandpa.

I finally was able to make my escape from the hospital eleven days after going in. Doctors, nurses, and my family all said I looked much better then when I came to the hospital. Those hardcore antibiotics, early morning pokes and prods, and invasive tests were worth it. I feel much better. Now I plan on working on getting stronger, doing the stretching exercises the physical therapist recommended, and regaining my mobility. I am being sent home with a hospital bed (one of the cool ones that goes up, down, and every which way) and a wheelchair. In my mind, the bed is no big deal, but the wheelchair I struggle with immensely. I can not help crying when I think of my years as a City of San Diego lifeguard or running with friends in college. Where is that Carleton? This new wheelchair bound Carleton isn't the same and dare I say a bit pathetic at controlling his chair.

I will get better at the chair, just as I will get better overall with my health. It will just take time and definitely a lot of love and support. Im at times completely overwhelmed by my current situation but today I am not. I am hopeful and happy that I have such wonderful friends, family, a loving partner, and the best team of doctors working on my behalf. Thank you all. As always take care of one another and be well friends.

The rollercoaster continues: surgery, hospitalization and the slow process of recovering

Much has happened since my last blog posting. I will try and give you a brief recount of the important stuff then I will let you know where things are today and what I have to look forward to in the future……..

 

So two Wednesdays ago seemed like any other day. I quickly tire after a morning full of errands and chores and decide that what I really need the most is a nap. So I stripped down and laid down for a nap. When I awoke I was in the most unbelievably excruciating pain in my right groin/hip area (basically right where your leg meets your groin). The pain was so intense I could barely move around in the bed let alone stand up and walk to the living room. With tears streaming down my face I struggled to make it into the living room. I had no idea what this pain was at this point. I thought it might be a really bad Charlie horse, but I have had those in the past and they go away after some time and this was definitely not going away. Thankfully Eric arrived home from work shortly here after and told me to drink a glass of juice and tonic water in case it was a charley horse. So I did, and took some of my prescribed pain medication (morphine) and tried to sit comfortably on the sofa. Neither the tonic water nor the morphine had any effect on the increasing pain I was feeling. Eric took one more look at me and said you're either calling an ambulance or you’re getting in the car and we are going to the hospital. I was in so much pain there was no argument from me which I think surprised him a little too because he realized that this was serious.

It wouldn't be normal if I didn't leave something I needed at home and sure enough I left my id in my wallet at the apartment and poor Eric had to drive all the way back home and get it. I called my Dad and then made the longest five steps of my life up the driveway into the entrance to UCSD Emergency. I was triaged and taken right away to one of the beds in the hallway. I have seen people in these beds before, the homeless, the burned, and the really sick ones who just lay there screaming for someone to help them or put them out of their misery. I never thought that I would be one of those people, but I found myself in so much pain that all I could do was yelling for someone to please help me. I finally got a doctor to see me and some pain medicine in my system before I was moved into a private room. After lots of blood had been taken and all kinds of tests sent off for analysis, one doctor whose name I can't recall, came into the small hospital room in ER to talk with myself, Eric, and my father. He said that they were worried about a specific kind of tissue infection and that I would need to have emergency surgery that evening.

 

What? Come again?             Are you freaking kidding me?

 

I looked at Eric whose eyes were different than normal. They weren't as bright blue as they normally are, but rather a grayish blue that registered in my mind as him being scared. My Dad had a similar look and the silence spoke volumes to me. I began to plead that I did not want or need the surgery, but was quickly silenced and explained that I didn't have a choice- I was going to have the surgery. Scared, hurting, and uncertain of what they might find I had the surgery. My mom told me I was brave, but I told her I didn’t think I was because everyone else told me I had to.

 

Moving forward in time, I woke up in ICU on Thursday, but honestly I don't remember much from the next couple days because of the amount of pain I was in and the amount of strong medications I was taking. I had the enjoyable experience of a Foley Catheter and three central IV lines coming out of my neck. In short, I looked pretty sick, but pretty badass at the same time. For the first time in my life I needed someone to literally wipe my ass after using a bedpan in my hospital bed. Correction, after using two bedpans (filled the first one and needed another one). I spent a week in ICU recovering with wonderful nurses taking care of me and fantastic friends and family who came to sit with me and cheer me up. I was discharged from the hospital 9 days after going in and just in time to be home for the Fourth of July holiday.

 

Since coming home I have been slowly recovering from surgery and the blockage in my lymphatic system that has caused the most unbelievable swelling. I am not a doctor, but I believe what has happened is that one of the tumors from my KS has grown inward rather than outward from the skin. This tumor is then either completely blocking or pressing on lymphatic draining channels causing this tremendous buildup of fluid and swelling. I hate to be graphic and gross, but I really didn't think it was possible for one's private parts to be so swollen. I mean I have seen shows on National Geographic, but I never thought something like that could or would happen to me. The only relief comes from the bath tub or heating pad and both are only temporary. The morphine pain killer I have been prescribed barely touches it and it makes me feel quite under the influence. I take it before bed with an Ativan and my Gabapentin (deadens nerve synapses in my legs to relieve pain). The combination knocks me out so at least for a few hours I can rest and be in peace.

 

Today I have an appointment with the oncologist Dr. Reid. I have many things that I want to discuss with her as I am sure that she has many things to go over with me. After talking things through with myself, Eric and my Mom and Dad; we all have agreed that getting chemo is the number one priority because of how it helps the swelling and KS. I am planning on just going in there and looking her straight in the eyes and saying that I understand the risks of doing chemo if my blood work isn't high enough and I also understand the risks of secondary infections such as neutropenic fever should I have the chemo, but for me the risk is worth is because I don't know if I can endure another week or two weeks suffering in this much pain and discomfort.

My appointment is at 3:20pm this afternoon so until then its hurry up and wait. I will keep you all posted on what happens, but please keep your prayers and your love coming my way. I really could use it today. Thanks again friends and until next time, be healthy and happy.

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.

Chemotherapy Foul Starts

Hello Friends and Family, 

Unfortunately, I was unable to start chemotherapy treatments last Wednesday because my lab workup showed that my white blood cell count (and others) was too low. So after four needle sticks to start the iv and an hour to draw blood; I was told to come back on Monday and we would try this all over again. Unbelievable! I mean come on now. How many times do i have to pump myself up and then run into a wall?? You can not even come close to understanding how bummed I was... And to make things worse my oncologist relayed orders over the phone to the nurse that I need to have a port put in so I will not have to go through all of the needle sticks each time. But there is more.. she also ordered another bone marrow biopsy- my third in less than six months. I wept. With a room full of people and Eric sitting next to me, I turned to look out the ninth story window of UCSD hospital and cried. I couldn't hold it in any longer and like a raging river breaking the damn, my spirit broke and my emotions streamed down my face. It took me a long time to pull myself together just to walk out of the hospital, but I did.

Four days later I'm still recovering from effects of not having received the chemo treatment. The pain is unbearable at times, the physical tumors continue to grow, but I'm still here fighting through and trying to fix my spirit that has been broken too many times. So this afternoon I guess Eric was bumming just like I was and he decided to go grocery shopping. While he was at the store having his best shopping trip ever (brownies, ice cream, and my favorite kind of root beer just to name a few items that ended up in our fridge), there was a knock at the door. It was just who I needed to see- my doctor, Dr. Caperna. After a brief physical exam and going over my medicine list, he looked me in the eye and told me to keep going, to keep fighting. I'm not courageous like my grandfather, but with you- my friends and family I keep moving. Its not always a graceful movement or even one that goes forward, but I keep on.

I apologize for the emotional dumping, but I told everyone that I would update as much as I could and I am trying to keep my promise. I am also having to swallow my pride and ask for help with things that I never in my wildest dreams thought that I would need help with. So to those who have shown up, offered their help, and bear the brunt of my burdens- You are the reason I keep getting up, keep fighting, and keep going. Thank you. If it wasn't for you I would be in a much worse place than I am now. I will let you know how it goes tomorrow and say a prayer for me because I can use all the help I can get. Love you guys.

-C

Finally Some Good News!

Good news to report, the oncologist called this evening and gave me the results of my PET and CT scans. For the most part it was a good report- The couple of concerning issues in her mind only merited "watching and waiting" rather than biopsies. She has ordered the chemotherapy medicines for next Wednesday, but with scheduling being less than ideal at the infusion center it might not be until Thursday or Friday. I can't begin to express my relief and how very grateful I am for your prayers, love, and continued support. I'm nervous to start chemo, but mostly I look forward to some relief from the pain and suffering I have increasingly endured. I know there will be some pretty sick and "bad days" ahead, but the thought of having many more good days is wonderful. What an amazing feeling to have as I head to bed this evening. Thank you, love you, and good night everyone.

CT scan/PETscan: Today @ 2pm

Today I have my petscan at 2pm. No, its not for my pets. Its a diagnostic imaging exam that shows where cancer might be hiding in the cells of a person's body. Fun, right? Ugh. Between you and me I am feeling pretty nervous about it. I have had a few of these exams before and it really is no big deal. Lay in a loud, confining tunnel for about an hour while contrast is injected and images are taken. Its what these images might show that frighten me the most. I am apprehensive to start chemotherapy again knowing that its going to make me feel like... well, shit- sorry mom. You wouldnt step into the ring to fight against someone who you knew was going to beat you senseless would you? Thats kind of how chemo takes on your body. It beats you senseless and destroys not only the bad, but some of the good as well.

In life you never get the answers before the big test so I don't know why i'm expecting that to be the case now. Nothing I can do about it & whatever will be, will be. I'm just going to pretend like I am not scared and who knows... maybe by 2 o'clock I won't be anymore. ;-) #scaredshitless #thiscancerthingsuxs #keepingthefaith

Move Along: Music Video and Words to Live By

A long weekend of moving complete and now a long week of doctors appts, exams, and workups. A song to motivate myself- All American Rejects....
"When all u got to be is strong move along, move along like i know you do."


Here is the music video:

Enjoy and Goodnight.

Grandpa's Cane and Grandma's Wisdom

Cancer sucks. The fight is full of moments that smack you upside the head and make you think that there is no hope. I had one of these moments yesterday. Ironically, it was my birthday and this moment both figuratively and literally brought me to my knees. 

I went to visit Grandma before the evening’s activities and she opened her garage so that I could just park in the driveway and walk inside. However this time was different. I struggled and struggled to get out of my car. I must have tried 15 or so times before I was finally able to get out and stand up. Grandma could tell right away that I wasn’t walking as well as I had the last time that she had seen me. My cancer has swollen my feet, ankles, and legs to the point where I can barely dress myself or put on shoes. I slowly made my way inside so we could visit and I could snack on the delicious ice cream sandwiches she keeps in stock for Bradley and me.

I usually don’t admit that I am struggling or that I am not able to do what I once was capable of doing. Grandma could see that needed help and there was no way I was going to be able to let my pride deny my struggles. I broke down and told her that I needed help. I didn’t know what that help would be, but I knew deep down that I needed help. She knew exactly what I needed though and told me to wait a second as she went upstairs and got it. As she came around the kitchen and I could see what she was thinking, my eyes began to fill with tears. It was a cane. Not just any cane, but my Grandfather’s cane. I realized that she was right and that like it or not a cane would greatly help.

As many of you know my grandfather passed away in 2007 and that I have missed him every day since. So you can imagine my hesitation of using something that he had used because of the emotions that flooded into my conscience. My grandmother told me not to cry and to be happy. What? Be happy that I have to use a cane- no less Grandpa’s cane? Had she gone crazy? What she said to me next I never will forget. She told me that there really was no reason to be sad because now Grandpa would be walking with me all the time. He’d be right there in stride, step for step with me once again. This was something that I had longed for ever since he passed. She was right. It is comforting to have the security of the cane, but it is even better to have my Grandfather by my side again.

Despite the pain and difficulty my cancer has burdened me with, this visit with Grandma was one I know I will never forget. She was able to give me strength and a tool to help fight against this destructive disease. For this I am forever grateful. Today I am still struggling to walk and incredibly swollen, yet I am comforted in a way I haven’t been during my entire fight against cancer. Grandpa is right here at my side and he will help me beat cancer into remission. I had no idea a simple wooden cane could do so much. Thank you Grandma & Grandpa for always knowing what I need and for always being there for me. I love you both.

Tatyana's Gift to Me

My 2012 in Status updates