Chemo Round 2 (14)

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Oh boy. There’s a lot to say here, I think. Due to my upcoming class schedule this semester, I go to and will be going to the hospital to get my labs drawn and talk to my Oncologist on Monday. Unfortunately, labs take about two minutes and then the Doctor’s appointment isn’t for another hour because they have to process the labs. Yes, I get that that makes sense. It’s still that whole hurry-up-and-wait kind of thing, which is just…splendid.

Well, my labs came out “great,” so that’s always good to hear. My albumin level was really low originally, likely for a number of reasons. When I was first on the outs, the last thing I wanted to do was eat and especially eat protein, which are both extremely unusual me.  I guess I had an excuse. Also, I had some major inflammatory responses going on down in that belly of mine, thanks to the abscess. There were lots of days were it was a struggle to get more than 200-300 calories, some days there were none. I like to think of it as “intermittent fasting” – ha. I think the lack of protein, and calories in general, played a major role in my hair starting to fall out. My body was just like, sorry man, but I’m going to focus on keeping you alive instead of those luscious locks. Which, I completely appreciate. Thanks, body.  The albumin is back to the acceptable range now (up to 3.8 from 2.1). They never ran the prealbumin.

Dr. Kingsley (My hem-onc doc) didn’t have much to say really, everything looked good and he just wanted to know if I had any side effects or any questions. The only real side effects were that my back molars were really sensitive for about 48 hours when I was eating, I had one little bout of neuropathy in my hands, and I felt generally crappy on Friday. The strange thing about the teeth issue was that it would go away after the first bite…so not a huge deal. I just proceeded to keep on truckin’. Daddy’s got to eat!

Every other Tuesday for the next 22 weeks will be chemo day. Woohoo. The ladies at the front desk and the nurses are the best part. They’re always in good spirits and have a smile on their face. Then, you get to go back into the “chemo ward” (that’s just what I call it). It can be a chilling site depending on when you go back there. It’s exactly what you would think it is. A lot of sick people receiving chemo treatments and they are all at various stages in the process. A lot of them look…exhausted. I try to do my best to say hi to everyone and ask how they’re doing. I don’t think they realize I’m an actual patient until they finally make me sit down in the chair and they access my port and put the IV in. They access my port my essentially jamming a ¾ inch needle into the skin and into the port which, feels kind of like a pin cushion. Luckily, I don’t mind needles at all.

I have been and will continue to get there at 1230. It takes a while before the chemo gets started. They give me a bunch of pre-medicines. I didn’t even know that was a thing. They give me Aloxi, Dexamethasone, and emend (aprepitant). Aloxi and emend are both anti-nausea medicines and dexamethasone is a steroid. Basically, they are to keep me from getting nauseous or having a reaction to the chemo. The steroids are the only ones that are taken orally. They’re this alien blood greenish color and taste like fishy chalk, it’s not ideal.

My favorite part though, they get into their little biohazard suits before they give you the chemo. WHAT ARE YOU PUTTING IN ME THAT YOU NEED A BIOHAZARD SUIT?  I don’t need Ebola too. Nope, it’s just chemo. That stuff is that toxic. No wonder people feel like poop from it. It disrupts the function of all fast-growing cells in your body, which is like…all cells. The “biohazard suit” is really just a gown and a mask; I was trying to be dramatic.

Once they start the chemo, it takes about three hours for it to finish. They give me the Leucovorin and Oxaliplatin at the same time. The lovely 5-Fluoururacil gets to come home with me in this little pump thing that stays connected and pumping its little heart out for 46 hours. Once it’s done, I go back and get it unhooked and the port de-accessed…meaning yank that ¾ inch needle back out. I’m hoping for Scooby Doo band-aids next time. After that, I’m good to go for another 12 days until the next treatment.

I still have the 5-FU pump hooked up as of right now. I’ll get it off about 2:30 tomorrow. I had A LOT more side effects this time than last time. I hope it doesn’t increase at the same pace as last time or I’ll be in trouble. The biggest issue, the only issue really, is neuropathy in my hands. Essentially, when they get cold they feel like your feet do when they fall asleep. They get all tingly and it makes typing/texting a hassle. It’s like tiny pins and needles at the end of your fingertips. However, I was so pumped last night from the response that I just didn’t really care and powered through so I could respond to everyone’s messages! Though, I did decide to go see The Revenant during the worst part of it all.

The neuropathy lasted about 24 hours and was fairly consistent. The first treatment…it happened one isolated time. So, not the type of escalation I’m looking for. I went out and bought some of those gloves that you can wear and still use your phone and type with and stuff so I’ll see how that goes. I already know I’m going to hate wearing gloves everywhere, but if my hands stay warm enough, there’s no neuropathy. We’ll see which is more obnoxious after the next treatment.

Anyway, I’m feeling pretty great! I’m ready to get unplugged tomorrow and I’m really curious if Friday will be the day that it hits me hard again. I’ll keep you guys posted.

Cancer is just a word, not a story. It does not define me or anyone else who has it.

P.S. I can’t believe the Rams are really leaving. WTH Kroenke.

10 thoughts on “Chemo Round 2 (14)

  1. “intermittent fasting” Great term dude, sense of humor, love it. You also did very well on being dramatic with the “biohazard suit”. Keep this going & you will have beat this stuff before you know it. My prayers are always with you my man.

  2. I learned of you, your diagnosis and blog through an old high school classmate, Johnny Sullivan’s FB post. I wanted to share a bit of encouragement. My son, now 37, was diagnosed with non-Hodgkin’s lymphoma at age 32. He had eight rounds, one every three weeks, of chemotherapy and then 28 days of radiation. This July will mark his five year cancer free anniversary. The doctors told him at the start if he made it cancer free for five years after the end of treatment, he would be considered “cured” and have no higher chance of having cancer again than anyone else, so needless to say we are praying that July arrives uneventfully. As I read your blog, I saw so many parallels to my son’s journey – from the Google self-diagnosing, the hurry up and wait process of getting a real diagnosis, the port insertion to the actual start of chemo. I’m praying that you do as well as my son did and you will be celebrating your five year anniversary before you know it. I will be keeping up with you through your blog and if you are ever interested in reading my son’s blog, feel free to let me know and I’ll tell you how to find it. I don’t know if it helps to see how someone else close to your age felt physically and emotionally through their treatment or not, I just thought I’d give you the option. Many, many prayers for you and your family because it does affect everyone. After the initial shock, we accepted it as our “new normal” and continued on with our lives as best as possible. I know you all will do the same. God bless you all.

  3. Thanks for keeping us all up to date Mr. Zach! You know I’m doing that God thing and constantly praying for you! 😊

  4. I have so much to share. For now I will just hit some random thoughts. I was in Fargo, North Dakota on June 13, almost 30 years ago. It was my 35th birthday and I was there with my flying club to visit a SAC base. At least I think I was in Fargo. That was a long time ago. I had a telephone “appointment” to call my gastroenterologist, Dr. Butt. (I am NOT making that up.) I found a pay phone and used my calling card to call him. I told you it was a long time ago.
    Dr. Butt told me I had colon cancer and he made arrangements for me to go to London for surgery since no one on this continent knew how to do the surgery he wanted for me: Total colectomy with an ileo-anal anastamosis with a Koch pouch also called a “pull through.” By the time I got back to Columbia, Dr. Butt found that this doc was now at the Cleveland Clinic. I kind of wanted to go to London. Who wants to go to Cleveland, anyway?
    Julia, a nurse and my wife, and I hit the medical school library. We learned a couple of important things. First, since I am 6’2″, the pull through may not be possible. Second, there was a 25% chance of impotency. Dying of cancer, for some twisted reason, did not concern me as much as that 25% thing. That first issue became less of an issue when we found that Dr. Fazio at the Cleveland Clinic could also create a continent stoma and connect that to the pouch. This was a very good plan “B.” At this stage in the process, there was no grief or despair. Like Zach, we were too busy researching, learning and making plans and decisions.
    There is more to this story that I plan to share another day. Spoiler alter: I am still alive to write about this 30 years later and I have grandchildren. Zach, there is life after cancer.

  5. My Christmas present Dec. 2012 was a colon cancer diagnosis. I had surgery Jan 7th, they took about a foot of my colon. If it had been any lower I would had a colostomy bag. I started taking chemo in Feb. got my port one day started chemo the next. Every other Tuesday for 6 months, and I had a pump I wore for the next 48 hours. I think that is what I disliked the most, actually I think it was the beep every time it pumped. I was so full of steroids I was pumped, about the time I would get the pump remover I would crash for like 3 days. What I wouldn’t give for a glass of ice water, about the time I could drink it guess what time for my next round. About half way through my treatments my legs got real sentive they hurt, side effect of the treatment. I was diagnosed stage 3a they removed 13 lymph nodes also 1 had a trace of cancer. Nothing better than the count down to the final treatment. I go to Columbia MO next month for a cat scan, talk about stress, I do great until time for the ct scan. It’s always in the back of your mind, then someone else you know is diagnosed…… I feel lucky,so far so good, it is what it is if it returns I’m ready to fight again, never give up. I lost my dad to lymphoma, he was a fighter and so am I. I have really bad neurophy in my feet and some in my legs below the knees. I know I have rambled forgive me, keep your spirits up and never give up, take 1 day at a time.

  6. Zach,

    My 87 year old father, who was diagnosed 17 months ago with Stage 4 colon cancer (I believe I mentioned it in an email to you yesterday), is on the same chemotherapy drugs as you are, plus one more. He has good days and bad days, depending on where he is in the chemo cycle. He makes the most of the good days and grits and bears it on the bad ones. We try to do what we can on the bad days by encouraging fluids so he won’t get dehydrated, reminding him to take his nausea meds, fixing tummy soothing foods, and pampering him more than usual. Recently, he started attending a cancer support group; he doesn’t talk too much about it, which is fine, but he keeps going, so that is good.

    Debbie Lee put it well in her comment when she said that eventually, you will settle into a “new normal”. This will happen in its own time; it doesn’t mean that you will like this “new normal”, but the unsettled shock to your psyche will abate some.

    Take care of yourself; positive thinking is an amazing thing, but give yourself time to grieve, be angry, be sad, or to experience negative emotion. It is normal to feel depressed and down as you go through this. When you are not nauseated, eat as much high quality, nutritious food as you can (as a CrossFit guy it sounds like you know a lot about nutrition). Take your nausea medication, even if it makes you sleepy. (I just had to say that because my dad was so resistant to taking his, “he didn’t wan to sleep all the time”. )Better to sleep than be miserable with nausea.)
    And finally, if you aren’t already doing this, take a notebook to all your doctor’s appointments to write down what they say. If you have surgery, have your family or someone write down what is said post-op/post-procedure. If you are hospitalized, take the notebook with you. Keep a log of the dates of all your chemo treatments. You are probably doing all of this, but I have to say, the notekeeping was really helpful for our family. OK, enough advice which is probably redundant to what others have told you or you have read.

    I’ve rambled enough. I”ll be following your blog. For now, wishing you fair winds and following seas.

    Carol

  7. Thanks for sharing, Zach. I do hope you are feeling well today and will be tomorrow. Love, Grandpa

  8. At this time Julia and I were DINKs (Double Income No Kids). We knew we wanted children someday but we were in no hurry. We were having the kind of fun that for which kids would have been a hinderance . Now we were faced with the choice to have kids the old fashioned way being taken away from us. We asked Dr. Butt about freezing some of my baby making stuff before I went in for surgery, now scheduled for July 3. We were told that the maintenance medication I had been on for ulcerative colitis rendered my swim team unable to do their job and that it takes three months to get a new team together. I figured some may have wondered about this so I thought I would go ahead and address it.
    Diagnosis on June 13. Surgery on July 3. We checked into the very fancy hotel attached to the Clinic several days early for labs and appointments. I knew that the delightful pre-surgery prep was going to happen, so I took full advantage of the dining available. I ordered eggs benedict for breakfast. There was so much Hollandaise sauce that it was served in a bowl. The waitress sat the bowl in front of me and said, “They have the cure for that across the street.” ( The Cleveland Clinic is famous for its heart program. ) That was my last indulgence for a while.
    I finally had my appointment with Dr. Fazio, an Aussie with a charming accent and huge hands. A very intense individual. He went over the informed consent, explaining about two dozen negative results, giving me the percentages for everyone doing this procedure and the percentages under his care. Going in I knew the general percentages but I did not know his. His were always much lower. He got to the impotency thing and told me that there was a 25% chance of that for everyone else. “In my care, zero.” I asked him to repeat that.
    Thing were hazy after that. Drugs may have been involved. I remember that I was not worried or afraid. I remember kissing my wife. I remember being told be move over to a metal table from my comfortable bed on wheels. That seemed somewhat daunting but I managed. All this happened surprisingly late in the day. I found out later that the surgery took about eight hours and was finished around midnight. The only other thing I remember before sometime on July 5 was being told to move myself off of the operating table to the bed on wheels. Are you kidding me? I had just been hit by a truck that backed up and hit me again. I screamed as I made the effort. I heard some smart mouthed person say, “Well his lungs work.” What happened to the Fourth of July, I have no idea.
    I had a tube up my nose. I had a tube in my arm. I had a bundle of tubes coming out of my belly. I had a tube coming out of my favorite organ. That was the most annoying tube and of course it was the last one they eventually took out.
    I also had a tube coming out of my stoma. Dr. Fazio had constructed the pull through but while I was opened up he decided he had stretched things too far, so he went to plan “B”, the continent stoma. This explained a few of those hours I spent in the O.R.. Deciding on a surgeon who knew how to do both procedures turned out to be a good decision.
    The next few days, as anyone who has had gut surgery remembers so well, involved pain management and being forced to move. Just getting to the point where I could sit on the edge of the bed was excruciating. If I knew any government secrets, I would have told them. I was weak from loss of blood and in pain. They made me to cough. They made me blow into some plastic torture device. I wish I had known secrets.
    After about six days the pain was about gone. The weakness persisted. I was bored. The food was, well, hospital food. I couldn’t sleep. The morphine and I were not getting along so I refused anymore narcotics. I knew there was a king size bed in a plush hotel room with 24 hour room service and was attached to where I was by an enclosed bridge. I convinced the care team to discharge me to the care of my wife as long as I came to see them every day until they cleared me to travel home. I pointed out more than once that Julia is a BSN and worked on a surgery floor that handled gut surgery people. Julia had gained the respect of the care team during my stay. At first her experience made them nervous as they knew she would spot any little mistake or departure from accepted practices. However she was kind and helpful and even helped out by keeping an eye on my roommates. Not every patient has their own nurse or even a family member who can be with them 24/7. Julia spent most night sleeping in a chair by my bed even though we had a hotel room nearby. Also she bought pizzas for each shift. If you are in the hospital for more than a couple of days, be sure to do this!
    Finally discharged along with the tube coming out of my stoma that drained into a bag. This arrangement was to remain for six weeks and until my return to Cleveland. This was not exactly a good arrangement for traveling in a commercial airliner. Besides, I was weak and while out of pain, I was sore and sitting was not comfortable. I called my friends at Central Missouri Aviation to come fetch me. Julia, my mother, who had come to Cleveland to check on me, and I came home in a Cherokee Lance outfitted with a stretcher in the back.
    My trusted airplane partner met us on the tarmac to drive us home. Finally at home in my own bed and on my own figuring out how to work with all the poop apparatus. Still weak. Brushing my teeth took two trips to the bathroom, resting between uppers and lowers. It was a month before I walked to the mailbox.
    Gut surgery is not for pussies.
    I do not recall exactly when I saw the op notes, but I will never forget the words, “Mr. Faber is cured of cancer.” Next time I write, I have a few loose ends to tie up.

  9. One would think that I get enough of this on a daily basis – being I work at the Cancer Center in Kirksville, MO. Part of Missouri Cancer Associates in Columbia, MO – but I am really enjoying reading your blog! Your attitude is what I love to see, we always have a smiling face, always willing to help – We go above and beyond – anything to make this easier for our patients and their families….. We love to have fun, chat, eat and keep our patients laughing and making a difficult time into one that is brighter, which seems to make it a bit easier to handle (we’ve had patients come in every day because they wanted to).
    I admire you, I admire all patients with that “word”, you are correct – it doesn’t define you, it is a battle that must and will be defeated! Keep up the positive attitude and stay strong.

    PS: if you were at our clinic and I had read the “scooby doo bandaids” – you would totally have them the next time you came in! 😉 Because that’s how we roll! Good Luck!

  10. Loose ends. Soon after a very nervous student nurse removed my catheter, I HAD to make sure I still had lead in my pencil. I did. Dr. Fazio ‘s 0% track record of this surgery resulting in impotency was intact, as was I. Dr. Butt had told me it would take three months to train a new swim team. Do the math. Ben was born roughly 12 months after my surgery. I had written that I was weak when I got home, but I found the strength I needed.
    The words “hero” and “heroic” are tossed around when people talk about people fighting cancer, especially when the battle is lost. I never felt like a hero. When I walked my first survivor lap at the Boone County Relay for Life, about 20 years post op, the cheering and clapping embarrassed me. During the second lap, the lap during which the survivors are joined by those who supported us , I started to cry. These people are the real heroes.
    Dr. Butt is another hero. Knowing that my history of ulcerative colitis made me a strong candidate for cancer, he had me in for frequent colonoscopies. Thus my cancer was detected early. Dr. Fazio pulled 127 lymph nodes and a few of some other doctor-word things (my momma and papa sent me to lawyering school, not doctoring school) and all were negative. No chemo. No radiation. Early detection rocks.
    Dr. Butt took vacation time to go to Cleveland. While there, he went to the Cleveland Clinic and reviewed all of the pathology slides himself. Did I mention he was a hero? I dragged him to several organizations to talk about the benefits of medical care. When I introduced him, I said that another Boone County attorney was diagnosed with colon cancer about the same time as I. “I am here. He is not. Dr. Butt will talk about why I am still here.”
    The 30th anniversary of my surgery is coming up this July 3. I will be 65. I have gotten old enough that prostate cancer is now a concern. I wonder if I can find a surgeon for whom the outcome of this surgery is zero percent for impotency.

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