The side effects from the latest round of chemo have really been taking their toll. My decline started even earlier this time around. I started going downhill Thursday evening and began vomiting that night. Nausea continued off and on throughout the weekend, which up to this point hadn’t been much of a problem at all. I took a ginger pill before each meal and that helped quite a bit to relive the nausea. During my previous treatments I was able to stay up for a good part of the day in my chair at home. However, this time I found myself crawling into bed more often and feeling very, very drained. I’ve also been experiencing terrible constipation followed by diarrhea. I feel like I’ve been through the wringer this time around and I’m really glad there are only two more treatments remaining.
My name is John McGinley and I'm a research associate in the Cancer Prevention Laboratory at Colorado State University. I was diagnosed with colorectal cancer at 47 and I'm sharing my personal experience in the hope that it will encourage others to seek help before it's too late. Disclaimer: The information presented in this blog is personal observation and may not represent the views of the Cancer Prevention Laboratory or Colorado State University.
Wednesday, October 5, 2011
Saturday, October 1, 2011
The falling leaves
The family headed to Estes Park this afternoon to see the fall colors in Rocky Mountain national park. I didn’t know how well I would do at the increased altitude, but I was far enough along in recovery that I made it just fine. It felt great driving through the mountains and gazing at the wonderful scenery. Definitely the best medicine I’ve had in a long time.
Wednesday, September 14, 2011
Chemo 8
My decline from treatment started even earlier this time on Friday morning before the portable IV was disconnected. I felt so bad afterward that I wasn’t able to return to work and was homebound until mid morning the following Wednesday.
Monday, September 12, 2011
Numb
I met with my oncologist this morning and we talked about the numbness in my feet.
I mostly noticed it when my feet were cold and it started to fade during the recovery period. He said that he would continue to monitor the problem, but that treatment would remain unchanged for the time being.
Wednesday, August 24, 2011
Chemo 7
The cumulative effects of treatment are starting to kick in. Recovery appears to be taking a little longer than usual. In the past I would have treatment on Wednesday morning and wouldn’t start to decline until Friday evening. This time I started feeling bad Friday morning shortly after the nurse removed my portable IV pump. I had to come home and rest for a while before returning to work that day. Typically, I would be down for the weekend and Monday, but would start to rebound on Tuesday. This time I didn’t rebound until Wednesday morning. I also noticed a numbness in both of my feet extending from the ball of the foot to the toes. I was wondering if this could be the beginning of neuropathy.
Friday, August 19, 2011
Hair today, gone tomorrow
My hair had been thinning quite a bit during the course of treatment. I got it cut the week before, but it just wouldn’t lay right and I didn’t want to be one of those guys with the dreaded comb-over. I mentioned to my wife a few days before that I was think about shaving it all off. I went to Supercuts on Friday and got it high and tight. I got home that evening and my wife was in shock. I wasn’t real happy with the remaining stubble on top so I decided to shave the rest of it off. My wife kept staring at my bald head the entire evening, but the new look eventually grew on her. All I needed now was a lollipop…”who loves ya baby”?
Wednesday, August 3, 2011
Chemo 6
I saw the oncologist on Monday and he said that I’m doing great and that we could probably reduce the number of treatments from 12 down to 11 and I should be finished up around the 18th of November. He also informed me that the genetic testing for mutations in DNA mismatch repair genes came back negative, so good news for the family.
Wednesday, July 13, 2011
Chemo 5
Having that extra week of recovery made a huge difference not only in my physical health, but my mental health as well. I’m confident that I’ll be able to power through the remaining treatments. It probably won’t be easy, especially toward the end, but I feel like I can handle it knowing that I’ll have a few days of feeling like a human being between treatments.
Wednesday, June 22, 2011
Chemo 4
I saw my oncologist this morning during my chemo session and we discussed the problems I had been experiencing with extreme fatigue and I was starting to show signs of depression. My platelet counts were low and I began experiencing spontaneous nose bleeds over the past week. Cold sensitivity from the Oxialplatin lingered and the recovery window from chemo, days when I felt halfway descent was down to about 3 days between treatments. This was especially, disturbing since Oxilaplatin can cause neuropathy in the feet and hands and being diabetic already increases my risk of neuropathy. He changed my treatment schedule from that point on from every 2 weeks to every 3 weeks. Allowing me a little more recovery time. He also wanted to get some genetic testing done to rule out problems with DNA mismatch repair.
Thursday, June 16, 2011
Downward spiral
Chemo has really been kicking me this week. I was able stick it out on Monday and work the whole day, but I had to go home Tuesday at noon. I had to stay home yesterday morning, except for a oncology visit and I wasn’t able to make it to work until 10:30 AM this morning. When I saw the PA at the oncologist’s office yesterday my blood pressure was still low, e.g. 102/60. She said low BP is typical with chemo and recommended that I cut my BP med dose in half, which I did last night. Three things are dragging me down, chemo, low BP and high blood glucose from steroids, which are given prior to chemo infusion. If it’s this bad now I can’t image what it’s going to be like 5 months from now.
Wednesday, June 8, 2011
Chemo 3
Cold sensitivity kicked in right away and I’ll be dealing with that for the next week. Felt pretty good yesterday, but wasn’t able to sleep well last night because of the steroids. Today has been going well so far, but I’m sure fatigue will begin to set in tomorrow after they remove the portable pump. I’ll probably be feeling drained this weekend, but such is life when you’re on treatment. I’m still drinking a lot of water and trying to walk as much as I can, which has been helping.
Thursday, June 2, 2011
Dr. Oz’s cancer scare
Here’s a link to a Time magazine article regarding Dr. Oz and his personal colonoscopy experience. They say that doctors make the worst patients and Dr. Oz was no exception. He didn’t perform the colon prep adequately making it more difficult to perform the examination. However, a polyp was found during the procedure. He was supposed to have a follow up colonoscopy performed a few months later, but kept procrastinating even though as a doctor he knew better. It’s a interesting read.
Wednesday, May 25, 2011
Chemo 2
Chemo went well yesterday and I felt pretty good the rest of the day and today has been good too. I’ve been drinking a lot more water before and after treatment, which has really helped along with walking as much as I can. No nausea so far, but I didn’t notice any problems the first time until after the bag came off. We’ll see how it goes this time around. Right now my biggest problem is sensitivity to cold from the Oxaliplatin. My hands are especially sensitive and anything cold I touch feels like a hundred needles jabbing into my skin. I can’t wash my hands unless the water is warm, otherwise the pain is just too intense. Sometimes it feel like needles and other times it feel like big shock similar to grabbing an exposed electrical wire. Either way, it’s not very pleasant. As long as I stay warm and eat/drink things that are room temp or warmer there’s no problem. I’m thankful that the weather is warmer now. I can’t imagine going through this during the winter months. My cell counts have started to drop a little bit, but nothing too serious yet. Hopefully, I can squeak by without having to take Neulasta (bone marrow stimulant) as I hear this can cause the bones to ache. That’s two treatments down and ten to go.
Tuesday, May 17, 2011
Aftermath
Nausea and extreme fatigue had kicked in over the weekend and continued through Monday, but I was able to make it back to work this morning. Having been on 5-FU earlier in the year I didn’t expect the side effects to hit me so soon, but combined with Oxaliplatin it’s like a double whammy.
Thursday, May 12, 2011
Chemo 1 - back in black
Treatment started at 8:00 AM this morning. The nurse accessed my port and started administering premeds, which included a steroid called decadron (dexamethasone), a powerful anti-inflammatory agent and aloxi (palonosetron), which is used as an anti-emetic. Next, an IV consisting of Oxaliplatin and Leukovorin along with 5% dextrose (D5) was administered over a two hour period. I got a bolus injection of 5-FU over a 2 minute period. Afterwards the nurse connected my portable 5-FU pump. This time I got the basic black European carryall instead of the burgundy colored bag I carried earlier in the year. Treatment lasted just under 4 hours and I would need to report back at 10:00 AM on Friday to disconnect the portable pump. The first treatment went pretty well, but I felt very tired afterwards and wondered if I was going to be able to work that afternoon, but I powered through it.
Friday, April 22, 2011
Post surgical gameplan
I met with oncologist to discuss follow up treatment. He wanted to do some additional testing on the tumor that was removed at surgery. Specifically, he wanted to test for microsatellite instability (MSI), which is involved in DNA mismatch repair. He said there’s a population of patients with colorectal cancer patients, about 15% that are high MSI and these patients do not respond well to follow up chemo with FOLFOX. However, neoadjuvant treatment shrunk the tumor so much that there may not be enough tissue left to do additional testing. He put a call into the pathologist who read my slides to see if indeed there was enough tissue remaining to test for MSI and was waiting to hear back from him. In the meantime, treatment would proceed
The upshot is that that I have an appointment on May 9th. Hopefully, there will be enough tissue remaining that the test can be performed and we can get the results back before the 9th. As is stands now we will be moving forward with the standard 6 month FOLOFOX chemo regimen (12 cycles), e.g. every 2 weeks I go into the office for a 4-6 hour infusion of Oxaliplatin, Leukovorin and 5-FU in the chair followed by a 46 hour infusion of 5-FU (European carryall). He said that patients may experience problems with neuropathy around the 7th or 8th cycle and since I’m diabetic we’ll need to watch this closely and may need to stop chemo at that point. I’m not sure when I will be starting chemo. All I know is that it will be sometime after May 9th.
Wednesday, April 13, 2011
Back to work
I retuned to work this morning just three weeks to the day from surgery. Everyone was happy to see me and it felt great getting back to work and being able to work with such a great group of people.
Thursday, April 7, 2011
Follow up with surgeon
I had a post-surgical follow up appointment with my surgeon this afternoon. He said my incision was healing nicely and that I could go back to work next week if I was ready. My rash had faded, but my skin was still darkened. We discussed the problem and we concluded that it must have been contact dermatitis from the compression sleeves.
Friday, April 1, 2011
Rash saga continues
The rash was really getting bad on both legs today and my wife took me to the ER to get it checked out. They ran some blood work and everything came back fine. The ER doc thought it looked like contact dermatitis and said to continue taking Benadryl and that it should clear up in a few days. It itched like crazy and I couldn’t stand anything clothing touching that part of my skin.
Monday, March 28, 2011
Rash
I woke up this morning and my lower right leg felt like it was on fire. I looked down and a rash had formed directly around the area where the compression sleeves had been placed on my legs to prevent blood clots during my stay in the hospital. I wondered if I was having an allergic reaction to some of the meds that had been given to me in the hospital or if it was just contact dermatitis from the sleeves. My surgeon had prescribed vicodin to help with any post surgical pain, but I was afraid that I might be causing the allergic reaction and so I stopped all pain meds immediately.
Sunday, March 27, 2011
Homeward bound
I was discharged from the hospital this afternoon and I was able to walk out of the hospital unassisted. It felt good to be outside again, but it felt even better to be home. My mother-in-law had been holding down the fort at home taking care of our daughter so that my wife could be with me in the hospital. I was very appreciative of her taking the time and effort to fly up from Oklahoma to help me in my time of need.
Saturday, March 26, 2011
Hangin’ at hospital with the fam
I was finally able to take a shower this morning and it felt great to get cleaned up. Two of my sisters, Margaret and Libby drove up from Denver and came for a visit this morning. We made lap around the entire wing and visited for a while back in my room. It was great seeing them and we were all looking forward getting together again after I returned home from the hospital. My blood pressure was elevated this evening for some reason and I had to be placed on an IV blood pressure medication in order for it to come down to a reasonable level.
Friday, March 25, 2011
Now and Zen
Two colleagues from work came to visit me in the hospital this afternoon. The lab pitched in and bought me some flowers; a beautiful arrangement including bird of paradise. We had a great visit and it was nice to see some familiar faces. Liz and Jarrod, you guys rock!
Thursday, March 24, 2011
Silence! I kill you!
It’s hard to get a descent night sleep in the hospital when staff are coming in at all hours of the night taking vital signs, etc., but I will have to say the staff did a good job of keeping interruptions to a minimum. My IV pump on the other hand always seemed to be alarming for some reason or another. I soon began to refer to it as Achmed wake the dead. My wife left early that morning to go home and get a few hours of sleep. Not long afterwards my surgeon arrived to see how I was doing. He said that surgery took a little longer than expected because I had a small pelvis and it was difficult to maneuver. He was glad that we had opted to do neoadjuvant therapy to shrink the tumor prior to surgery, which made the procedure easier that it would have been otherwise. He upgraded my diet from ice chips and IVs to broth and clear fluids and it felt good to get a little something in my stomach. I was up and moving around a few times during the day. My wife returned later that day and we settled in for another night.
Wednesday, March 23, 2011
Cut along the dotted line…
I spent the day before surgery day fasting, only broth and clear liquids in preparation for surgery. I started my first dose of antibiotics in the morning and continued in the afternoon and evening. I started the McMargarita (magnesium citrate) late in afternoon and it wasn’t long before I was dancing the quick step to the bathroom. The prep was similar to colonoscopy prep except for the antibiotics. However later in the evening I began vomiting and it continued throughout the night. I got to the hospital about 8:00 AM and surgery was scheduled for 10:30 AM, which according to Dr. Oz turns out to be the optimal time of day for having surgery. The idea being that the surgeon has been awake for a while, has already preformed a procedure or two and is starting to hit their stride.
I mentioned to the admitting nurse that I had been vomiting all night and she wasn’t surprised since taking metronidazole on an empty stomach frequently causes nausea and vomiting. Now you tell me, I said. Apparently they don’t like to tell patients about the side effects out of concern that they won’t take the antibiotics prior to surgery. While the bowel prep was successful it still wasn’t as clear and pristine as the colonoscopy prep and I was concerned about peritonitis. I mentioned this to my surgeon and he wasn’t alarmed at all. He said not to worry and that all would be well. They rolled me into the surgical room and all I could see was a bright white room with an array of large surgical lights above. I had to scoot from the gurney to the adjacent narrow operating table. The anesthesia began to flow and that was the last thing I recall before waking up in recovery.
Tuesday, March 15, 2011
Tell me somethin’ good
I got the results of my PET scan this afternoon and I was amazed at the results. My oncologist said that the tumor had shrunk about 60-70% from its original size. Neoadjuvant treatment was a great success! The original scan is displayed in the top pane and the tumor is depicted as a bright yellow/orange mass near the center of the image (circled). The follow up scan is displayed in the bottom pane and shows a dramatic reduction in size. The two bright areas in the top portion of the image are considered physiologic.
Monday, March 14, 2011
Can you see the real me?
I received some terrible news this morning. A colleague of mine had taken his own life. He was a good man, married with two wonderful, healthy children. He had a great sense of humor, was well liked by all who knew him and he seemed to be happy. However, outward appearances can be deceiving and no one knows for sure what another person is really thinking. As news of his death began to sink in I was struck by irony of the situation. Here I was going through months of treatment, fighting for my life while someone else was willing to throw their life away. Many people experience depression at one point or another during their lives, but what drives a person to the point where they honestly believe that their family, friends and the world as a whole will be better off without them?
Everyone has their breaking point, but we need to remember that all of us have an ally in common…change. It’s the one thing that we humans can depend on in life. No matter how bad things appear to be now they will most certainly change in the future. However, when a person is in the throes of depression it can be difficult, almost impossible to see beyond what is happening right now. Societal attitudes and the perceived stigma associated depression and other mental health disorders need to change. People shouldn’t hesitate to ask for help, especially when they need it most. It’s not a sign of weakness. It’ a sign that says I’m going through a difficult period in my life and I can’t do it alone; I need the help and support of others to get me through this difficult time.
Friday, March 11, 2011
PET scan
The follow up PET scan was this morning, but I came prepared this time with flexeril and vicodin in hand, which really helped my bad back. As I laid there on the table I kept wondering about the results and couldn’t wait to see them next week.
Friday, March 4, 2011
DEXA scan
My oncologist was concerned about my chronic lower back pain and ordered a bone density or DEXA scan to rule out any structural problems. These scans are typically done on older women to look for signs of osteoporosis. That being the case the scan tables are pretty short and I had a little trouble getting positioned correctly, but all ended well. I got the results a few days later and everything looked fine, structural problems or evidence of osteoporosis. In fact my bone density was above average. My chronic back pain was probably a neuromuscular problem.
Wednesday, March 2, 2011
Port flush
I had to go to make a quick trip to the oncology office this afternoon for a port flush.
My port has to be flushed with heparin about every 4 weeks to prevent any blood clots from forming and obstructing flow. It’s a simple in and out procedure. Slap on the blood wings, followed by a syringe of saline or two and then one syringe of heparin.
Tuesday, March 1, 2011
National Colorectal Cancer Awareness Month
In honor of national colorectal cancer awareness month I thought I would post a link to humorist, Dave Barry's hilarious article detailing his personal colonoscopy experience, entitled "a journey into my colon -- and yours".
Friday, February 25, 2011
It’s more of a gray area
I met with my radiation oncologist and we talked about my progress. The problem I had been experiencing with painful urination went away just a couple of days prior to my appointment. He said that painful urination is a typical side effect from radiation treatment to the pelvis and that most of the time it’s only temporary and just lasts a few days/weeks. He said that most of the apoptosis (cell death) within the tumor should take place in the few weeks following treatment. He wanted to schedule another PET scan about a week or so prior to surgery to see just how much of the tumor was left. He thought that I would have very good response and would not be surprised if the tumor had shrunk by half. I asked him how rads I received with each dose of radiation. He said that the scale was measured in grays (gy) instead rads and that I had been receiving a dose of 1.8 gy with each treatment and the form of radiation was just below that of gamma waves on the spectrum.
Thursday, February 10, 2011
Setting the date
I met with my surgeon this this morning to schedule a date for surgery and March 23rd would be the big day. We talked about the laparoscopic procedure and he said that I would be in the hospital for 3-5 days following surgery. He wanted me to stay home for at least two weeks after surgery and said it would take about 6 weeks before I was completely healed. He gave me a prep kit containing a McMargarita (bottle of magnesium citrate) several doses antibiotics (erythromycin and metronidazole) and a set of instructions. Now it was time to hurry up and wait.
Monday, February 7, 2011
Go with the flow
A few days after my last radiation treatment I began to experience a fair amount of pain while urinating and wondered if I had a bladder infection. I felt like Tom Hanks in the Green Mile and I was wishing John Coffey would appear to help “take it back”. Finally, I asked my oncologist to run a urinalysis and some cultures to see if it was indeed a bladder infection. The results were negative. It turned out that the painful burning sensation was a side effect of the radiation treatments. I had experienced some mild discomfort toward the end of my treatments, but nothing quite like this. Oddly enough, when I had to empty a full bladder it didn’t hurt as bad as when the volume was low. Using any abdominal muscles only made matters worse. I had to totally relax and just go with the flow.
Saturday, February 5, 2011
All in the family
My sister, Patti had her first colonoscopy on MLK day and a sizable polyp was found during the procedure. It was now official; polyps had been found in all four siblings.
Wednesday, February 2, 2011
Last day of neoadjuvant therapy
This afternoon I went to the oncology office to have my portable IV pump, a.k.a. European carry-all disconnected The nursing staff gathered round to congratulate me on making it through treatment and gave me a bottle of sparkling cider to celebrate. I thanked them, left the office and it felt wonderful to finally be free after being tethered to the portable IV, 24/7 for 7 weeks.
Tuesday, January 25, 2011
Chemo week 6 – uno mas
I saw my oncologist this morning and he remarked about how well I was tolerating chemo. My white cell count had dropped a little from the previous week, but nothing to worry about. I had been feeling more fatigued during the past week especially the past weekend. I spent most of Saturday either sleeping in bed or dozing in my recliner. Sunday morning wasn’t much better, but I started feeling better later that afternoon. Yesterday started out okay at work. However, around 11:00 AM things started to deteriorate quickly. I continued working a couple of more hours, but I had to throw in the towel around 1:30 PM and went home. That’s the odd thing about being on treatment; you never know when fatigue is going to hit you.
I hadn’t experienced shortness of breath until this week. It just happened a couple of times, once on Thursday and again on Saturday and only last a few moments. My oncologist wasn’t too concerned as I didn’t have any chest pain and the episodes were very short. Shortness of breath can be a concern if the episodes are frequent and or prolonged, which can result in hypoxia (low oxygen). It’s important that the tumor tissue does not become hypoxic because it could cause up regulation of hypoxia inducible factors, e.g. HIF-1 alpha, which in turn can stimulate vascular endothelial cell growth factor (VEGF), thus triggering angiogenesis, i.e. formation of new blood vessels. This must be avoided, as it will interfere with success of treatment. The idea is to fly under the radar and kill tumor cells slowly using radiation and a continuous low dose chemotherapeutic agent, e.g. 5-FU. Placing the tumor in a hypoxic state would cause it to mount a strong defense by triggering angiogenesis, which could increase the risk of metastasis. So the upshot is tumor hypoxia es no bueno.
This afternoon I went back to the oncology office for my last chemo exchange. I have to wear my European carry-all just one more week and then I’ll be done with neoadjuvant therapy. My last day of radiation is tomorrow and it will be so nice to put that part of the treatment behind me.
Monday, January 17, 2011
Chemo week 5 - Free at last? Not so fast.
I didn’t receive my weekly chemogram from Coram on Friday and thought my oncologist had decided to stick to the original 5 week plan. However, when I went into the oncology office this afternoon they apologized and said that there was a miscommunication and that my oncologist did want me to continue chemo for two more weeks, but the instructions were never communicated to Coram. They removed my IV line for the evening, but I needed to come back tomorrow at 1:30 PM so they could hook me up again, which was fine with me. I was so happy to get rid of that boat anchor around my neck even if it was just overnight. It felt great walking out of the office without my European carry-all and I was really looking forward to taking a long hot shower!
Monday, January 10, 2011
Chemo week 4
My oncologist is pleased with how well I’ve been able to tolerate chemo. Many people on 5-FU have problems with nausea, appetite or taste change, severe diarrhea, etc. I hadn’t exhibited any signs of nausea to speak of, my appetite was still good and the only taste change I had noticed was coffee tasted bitter and I had to switch to tea (Celestial Cinnamon Apple Spice is now my fav), but that was it. He said that if I continued doing well he might consider extending chemo out another week or so beyond the typical 5 week period.
Monday, January 3, 2011
Chemo week 3 - dancing the quick step
I really began to feel the effects of chemo and radiation by the third week of treatment. Up to this point I had just been dealing with chronic fatigue and intermittent dry mouth. The opiate in the Vicodin I was taking to help get me through the radiation treatments during the week was also slowing down my GI tract, which helped to counteract diarrhea caused from chemo. However, when I stopped taking Vicodin on the weekend let’s just say I got pretty good at dancing the quick step. I modified my diet right away by abandoning the high fiber content and replacing it with a low fiber alternatives, e.g. bananas, applesauce, white rice, white bread, etc. I had been eating whole wheat bread for years and was amazed at how tasteless my sandwich was with Wonder white. It was light, white and just not right. While changing my diet helped to slow things down a bit I was battling yet another problem. The simple starches in the low fiber diet caused my blood sugar to skyrocket, which exacerbated the fatigue I had been feeling. It wasn’t long before I had to switch back to my higher fiber diet of beans, brown rice and whole wheat. Imodium was a big help especially on the weekends when I wasn’t taking Vicodin.
Saturday, January 1, 2011
Dick Clark’s Snoozin’ Eve
While I had every intention of staying awake until midnight to bring in the New Year, the effects of chemo and radiation conspired against me. I slept through the last hour or so of 2010 in my recliner and woke up in 2011 after the ball had been dropped and there was nothing left except confetti to clean up. How pathetic is that? It’s just as well, I was ready to put 2010 behind me and frankly I’m wanting to put the treatment of 2011 behind me too so I can get on with my life. I’m hopeful that 2012 will be a better year and that the Mayan calendar is wrong.
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