Friday, October 29, 2010

Here come the side effects

Extremely difficult to wake up today. Had to call Dr Litton’s office to see if I could come in late for the Neulasta shot. This would be my last shot to help protect against infection because of the chemotherapy I’m receiving. Sometime closer to noon I finally ate a bowl of oatmeal with blueberries and a glass of milk. Then I went straight back to bed. I found it hard to even take my morning medicines, which includes anti-nausea drugs for the next several days while the chemo exits my body. It took all my strength to get motivated, up, dressed, and in the car heading toward Murray, Utah. Arriving shortly after 4 pm, as I signed in at the front desk I saw a group of people dressed up as the Wizard of Oz cast there to entertain the cancer patients who were in the infusion center that day. Apparently they were making their rounds to other hospitals. They looked really good. I waited just a few minutes then got called back by a staff member who was also dressed up for the Halloween weekend. She gave me the quick and painless Neulasta shot in the back of the arm and then it was back to the car. Craving red meat (which is rare for me - no pun intended - I like my meat burnt!) Leslie Kay, Autumn Barker and myself went to the OutBack Steakhouse for dinner. Throughout the day I could feel the side effects of the chemo beginning. The chills, the mouth sores, and general weary fatigue. I can’t believe that they are beginning on day 3, but then these things do compound with every treatment. I came home and settled straight into bed, taking my nightly medicines, and hoping to sleep the entire night away. This usually does not happen though. Waking up a few times throughout the night has become common for me. Chris and Norene Jensen stopped by to say hello right before a Halloween party. It is always good to see faces from good old Payson, Utah. Fed the dogs, and got back into bed. I’m thinking another 10-20 days and things will be looking much better. Looking forward to better energy levels with no side effects. Tomorrow I will be dressing up the dogs and will stay in bed and let them bark at the people who pass on the street from their favorite window spot in the living room. If the doorbell rings I will emerge from bed and we will give the ghouls or goblins a treat. The dogs love it, and the kids love seeing the dogs. I will be resting and thinking of many better days ahead. I’m so ready for it!

Thursday, October 28, 2010

Last 2 days of chemo - Part 2

Struggled to awake from lack of sleep; too anxious. Breakfast was oatmeal with blueberries. Attended to lost dogs who were eating the neighbors walnuts. Leslie Kay went to buy Shirley’s Bakery sweet rolls for me to take to my last treatment. Got cleaned up. Put on more makeup than I had been doing in many months. Most days it is none. Felt pretty good. Found a hat with a scarf that ties around it and loops into a bow out of the side that I had never worn after purchasing it. I guess I couldn’t find anything to wear it with or couldn’t decide if I even liked it. I put it on along with my clothes and jewelry for it was another special day. A day to look my very best, no matter how I felt, and a day of celebration. My father and mother showed up. My friend Leslie was already at the house. And we were to meet my sister Natalie at Dr Litton’s office. These people unarguably have given me a lot of support during this year and I wanted to have them with me on this momentous and important occasion. We rode together up to Murray, Utah for the start of my final chemo treatment! A nurse took my vital signs, then took us into the infusion room and told us to look for a seat if we could find one. They were indeed busy. We found a great spot off in the corner though. I took the sweet rolls over to the kitchen area so people could help themselves. Little by little throughout the day one person here and there would stop me and tell me what a cute hat I was wearing. I had to thank them, and then laugh because I was so unsure of it in the beginning. Last count got to somewhere around 10 people who complimented me on the hat. It’s always a good day when you get compliments right? We should never hold in a nice thought, kind word, or good deed, because we may never remember it again but it may mean the world to the receiver. While wandering a bit we ran right into a few of my favorite people, Bruce Bolonesi, Shirley Bleak, and Mike Gaffney who work directly with Dr Litton as PA's and NP's. We chatted a bit and took our picture together. I told them to go eat a sweet roll. We took more pictures of things I’d want to remember. My sister then arrived and a nurse brought her a mask at her request. She looked awesome! She had just gotten over a cough and did not want to risk breathing on any cancer patients. After returning to my seat it was time to be hooked up to the anti nausea drugs, fluids, and finally the adriamycin. The very last adriamycin! It is interesting because I cannot usually sit and watch the chemo go up the very small tube and then into my veins. But today I felt very confident, very empowered. And ready to move on. “Deuce” was my nurse today. I have had her before. She’s real nice. I asked if someone would bring me the usual cup of ice to chew on during the administration of the chemo. I am not certain it has helped prevent mouth sores for me. I still get them. But I am always will to try anything, even if it only means decreasing side effects. Suddenly we were done and my port was taken out of my chest for the last time (for chemo anyway). We gathered up the bags, my crutch, our purses and headed down the hallway for the grand finale’. All the way down the nurses station each one said, “You are going to ring the bell right?” Of course I would! So we gathered around the bell up on the wall and I rang it several times. It felt good. Everyone in the room, including patients clapped for me. We snapped a few pictures with the bell and headed out for a celebration lunch. We ended up eating at Ruby River Steakhouse, where I ordered a halibut encrusted in something (parmesan?) while most others got a steak. We left feeling very full. I gave Natalie a big hug goodbye and we started our journey back to Provo. I invited everyone in because Oprah had the entire von Trapp family from the original filming of The Sound Of Music on her show and I am a big fan. We only watched the last half but it was very good. People started leaving and I noticed notes and hearts on my bedroom door. I believe the culprit of the heart attacking was my roommate Sara Stauffer. It was very thoughtful and cute. It was only five or six pm when I started feeling tired for my bed for the rest of the evening. One of my prescriptions, an important one for the next couple of days too, needed to be picked up. Leslie saved the day. I sure have a hard time grasping that 2010 has even started let alone it is at the tail end. If things were on the original schedule I’d be getting admitted to the hospital sometime this weekend for a round of chemo. I would still be going until the end of the year or early into 2011. But with some mixed emotions. I am here. And I am done. Now follow up, and much more. But elated to be done with the hardest part.

Wednesday, October 27, 2010

Last 2 days of chemo - Part 1

Awoke. Breakfast. Eggs. Bagel and cream cheese. Attend to dogs. Get dressed. Put on hat; the one Jenn at the hospital made for me. Lip gloss and jewelry because today is a special day. Put on scarf my roommate Ann Hicken brought me back from Jordan. Gathered items. Mom came. She drove. Actually had a sense of relief on the car ride home that this was over. Finally over. Arrived at IMC and the Cancer Center. Checked in. A nurse took my vital signs and asked if this would be my last day. I let her know that tomorrow would be my official last day of chemo. I was taken into the infusion room and found a seat. A nurse came to access my port and get me started. She drew blood for the tests they would need to run prior to administering anything. I couldn't help but think how glad I was that this could possibly be the last time my port would be accessed for any kind of chemotherapy ever again. Crossing fingers. Crossing toes. Hoping and praying. My mom and I waited. Today was a rather busy day in the infusion room. It seemed alive. Often times in the past, people were sad, asleep, or just kept to themselves in a very quiet and somber way. But today I felt laughter. It made me happy. Happy to be alive. Happy to have such pleasant people and nursing staff to be around. I see an older couple bidding farewell to a younger man on their way out; wishing him well. Their faces were genuine, happy, alive, they were laughing, sincere about one another. These things all have healing powers. We met with Dr Litton in the middle of all of this, who said that I would indeed have this last cycle of adriamycin. I have had all clean chest x-rays this far, but would continue to be monitored for recurrence in bone and any metastasis in the lungs. X-rays, and MRI's every few months and watching for any side effects that seem unusual. Most of our meeting was kind of "chatty." But then, I've enjoyed getting to know him. All of my practitioners have helped save me this year. Literally. We walked back to the infusion room where I heard him whisper to one of the nurses that this was my last cycle. I sat back in my seat after making some hot cocoa with peppermint. The fluids, and anti-nausea were started into my port. And last but not least came the adriamycin. Ann Calder, who is my Sister in Law Stephanie's aunt, was my nurse today. There are some very nice nurses who I've had the privilege of getting to know there. After chewing on some ice chips during the adriamycin push (to supposedly prevent mouth sores) we were all through! We decided on a hamburger since it was close to 5 pm and I had not eaten since breakfast. We packed up the car and left the hospital for I-15 southbound to Provo only stopping once for a hamburger and fry at JCW's. When I returned, I actually felt a little excited for the next day. The last day. The final day. Wow. I really can't even begin to believe it. I am now extremely exhausted. These days wipe me out and I can sleep many hours. With warm peach cobbler in my stomach that Leslie Kay made, hopefully I can wind down now. Tomorrow is a very important day for me. I need my rest. Just took my nightly meds, including anti-nausea. Good night.

Tuesday, October 26, 2010

Chemotherapy Eve

Nervous, excited, sick, anxious, scared, and yet happy. Oh so extremely happy. In 2010, my life has been all about hospitals, operations, blood tests, needles, transfusions, overnight hospital stays, chemotherapy, MRI's and other scans, x-rays, pills, and a whole lot of worrying. I've developed anxiety attacks, and felt depression. Chemotherapy is really dreadful but I have gotten myself through it somehow. Believe it or not I have felt an outpouring of love, support and encouragement from so many. This is how I have been able to get through this; constant reminders that I am not alone, that I am loved, and to keep going strong. It is easy...when you know the kind of people I do.

Monday, October 25, 2010

To be done, or not to be... that is the question

It has been a long month. Over the past 30 days or a little more, I have received good news and bad news. The good news is that I am nearly done with chemo. The bad news is that I am nearly done with chemo. I have mixed feelings about this new set of information. It is a hard thing to understand, unless you have been through this.

During the middle of September I entered the hospital in Murray to complete a cycle of high dose methotrexate. This kind of chemotherapy is given in the hospital, and requires a stay of about 4-6 days each time. The cycle consists of two back-to-back treatments, which meant that once I was released from one treatment there would be a break of just a few days at home before I would return for the second one. It was during the second treatment of this past cycle that my liver tests started coming back elevated. Liver function tests are something that are monitored very closely throughout treatment. During the year my body has been put through some intensive chemotherapy and there have been side effects and tests needed, which have been as a result of the treatments. My white blood count as well as liver functions have been able to regenerate nicely during the cycles. The problem now was the results being elevated and not coming down soon enough. Long-term liver damage is not something my practitioners wish for me to have. When I returned to the hospital for the second treatment, it was then that I started finding out the seriousness of this. I arrived on a Friday night for check-in to prepare for chemo the next morning. I have followed this same pattern the entire year. It is what works for me. Saturday morning, then afternoon, and finally late afternoon came and went. The liver function tests were delaying the chemo. The treatment from the previous week had apparently not gotten things back down to normal levels yet. And this was a problem. I couldn’t do anything except wait. Sunday morning the pharmacy brought the prepared chemo to my room on the 9th floor and the nurses connected me. My liver had regenerated enough overnight. By Monday however, I had a nice visit from Bruce Bolonesi, PA-C, who showed me the blood work from that day. It had dramatically jumped and I was told that my oncologist may want to omit the last two cycles of methotrexate altogether. Many thoughts crossed my mind. Will the cycles I had done so far be enough if I stop? Is that the right decision to stop? In the years to come will I regret not having done all of the cycles? Did I do them for nothing? Did just a few cycles help or contribute? What about the side effects; will there be any permanent damage? What if the doctor gives me the option to make the choice, what should I do? What if this is my last stay in the hospital and I do not return to the place I have known during this whole year; the people I have grown to trust with my life, and who I’ve bonded with? There were many questions and emotions once I found out it could be the end of the high dose methotrexate. Don’t get me wrong. I also thought it was some of the best news I had received in a long time. Within just a couple of weeks things were confirmed that I would not be doing the last two cycles and would instead focus on the last two treatments of adriamycin. That was that. It was still a decision met with mixed feelings, however I could see the logic of looking at the harm being caused versus the benefits. This pushed everything forward on the schedule. Dr Litton said that without the other chemo drug, the last two cycles would be only 21 days apart and not 36. With the cancellation of the methotrexate, and having less days between the last 2 cycles I would be done before Christmas! In fact, I would be done before Thanksgiving! My last treatments of adriamycin would be October 5th, 6th, and 7th. Then the last and final treatment would be on October 27th, 28th, and 29th. This felt exciting to get it over with sooner than expected, yet it felt rushed and I felt afraid of having one of the very strongest chemo drugs so close together. Adriamycin is commonly referred to as the “red devil of death” among some people and practitioners.

Several days into the month of October, after the adriamycin, I developed a numbness and tingling in my feet that got a little bit worse by the day. It eventually went to my hands, but only just slightly. This is a condition called peripheral neuropathy and is a nerve damage that can be caused by some chemo drugs. It can be short term, long term or permanent. The recovery can be long term and there are things that can be done to treat it such as massage, acupuncture, physical therapy, over the counter vitamins and amino acids, as well as prescription medication. The neuropathy can become a very serious condition where a person cannot feel their hands and feet, and start having trouble with the simplest of tasks such as buttoning a shirt. So far, my neuropathy has been mostly in my feet, and was only bad for about a week. The platin chemo drugs have been known to cause this neuropathy, and one of the drugs I had during the first 4 cycles was called cisplatin. I have not had any of this kind for about 2 months though. During my 10-day follow up appointment with Shirley Bleak, D.N.P., F.N.P., we discussed the possibility that because of the neuropathy I may not have my final chemo treatment at all. Mostly we talked about shoes and exchanged our favorite websites, places to shop and brands to buy. But we talked about the real possibility that Dr Litton may meet with me on October 27th and say that I am done. Period. I will likely have the final treatment, because I do not believe that the adriamycin causes any neuropathy. So there is a chance that I will have my very final treatment in just a few days from now. If so, hopefully this will be the last treatment ever for the rest of my life. There is also a chance that I am already done and just do not know it yet. Both of them frighten me just a little for some of the same reasons quitting the methotrexate was hard. Most of it is just not knowing; the unknown.

I should mention that my hair started growing back just in time for it to start falling out again; eyelashes, brows, and a whole set of tiny head hairs. I am not sure how they were able to grow because I did not stop any treatments throughout the past months. The little bit of new growth will fall out and I will start the process all over again during the holidays; slowly but surely. I am looking forward to Thanksgiving; eating, being finished with chemo, feeling better and better each day, feeling the holiday spirit around me, and being able to give thanks and continue to watch the amazing blessings unfolding before me… about my life.