Wednesday, December 17, 2008
We arrived in Houston on Tuesday, December 2. This visit we actually had someone to greet us when we arrived. Marissa’s mom’s husband, Gary, is in Houston working for FEMA. He gave us his hotel room for several nights, it was only about a block away from MD Anderson, and we all went out to dinner a couple of times during our stay. This made our stay in Houston go by much quicker, and we enjoyed being able to visit with Gary.
Wednesday, December 3 my lab work and scans were performed. Thursday, December 4 we met with Dr. Trent. Dr. Trent told us that the chemotherapy was still working well and shrinking my masses. Of course Marissa and I were happy and very grateful for this news. We then decided to stay in Houston for my 9th round of chemo, as it was a new regimen and required me to be inpatient for 5 days. We decided we were more comfortable receiving this treatment at MD Anderson. I was scheduled to be admitted right after my appointment with Dr. Trent. However, we were sent back to the hotel as no rooms were available. So, Gary gave up his hotel room for another night, and Friday, December 5 I would be admitted.
Friday, December 5 I finally received a phone call from MD Anderson at 5 p.m. telling me my room would be ready around 6:30 p.m. So Friday evening Marissa and I settled in, and I prepared to start my 9th round of chemotherapy. This regimen consists of high dose Ifosfamide only. It is given inpatient because of all of the fluids that must accompany it, as well as monitoring my kidneys daily. There are many pre-medications to receive before the Ifosfamide. The Ifosfamide runs every 12 hours for 2 hours for a total of 7 courses. My first course of Ifosfamide began at 2 a.m. Over the next couple of days I experienced some nausea, but discovered I preferred to be inpatient. Before with my outpatient chemotherapy I had to bring home back packs with infusion pumps that gave me continuous chemo and fluids, and I did not enjoy lugging those heavy packs around. Tuesday, December 9 I received my last dose of Ifosfamide at 2 a.m. All of my lab work was coming back great so I was on track to be released Wednesday, December 10.
Wednesday, December 10 I was told I could be discharged, but there was a catch. I had been receiving over 6 liters of fluids a day and to be released I would have to be able to drink over 2 liters on my own. I was having a hard time drinking as I was feeling nauseous, so Marissa and I discussed it and we decided the best thing to do was to stay in the hospital 1 more day. We were concerned about such a long trip home and we wanted to play it safe. The rest of Wednesday I received fluids, and the next day I would be released. All in all my inpatient experience was very pleasant, and the nurses were really great.
Thursday, December 11 I was released as promised at about noon. Marissa had the car all packed, and we left for home straight from the hospital. We decided to make the drive all in one day so I would be back at home in case I needed fluids. We arrived at home in GA at about 4 a.m. Friday morning. Driving straight through made one really long ride for me and one really long drive for Marissa. Needless to say, we were very glad to be home. Friday, December 12 we were relaxing at home with our dogs, who were delivered that afternoon.
Saturday, December 12 I had a sudden fever. Later that evening it was only getting higher so Marissa and I headed for the ER at Emory Crawford Long. They took several blood cultures to send off, took some lab work, a chest x-ray and gave me fluids. When my lab results came back we learned that my white blood cells were only at 0.2. On Thursday before we left Houston they were at 16. We did not anticipate them falling so quickly, but then again with this new chemo we did not really know what to expect. My fever was due to my low white blood cell count (neutropenic fever), just as I had experienced my first round of chemo. The doctor on call wanted to admit me and give me IV antibiotics until my blood cultures came back. This would take between 24-72 hours. As I am already on preventative antibiotics I decided with my low white blood cell count I would probably be better off at home. From Saturday until Tuesday, December 16 I had a high fever and had to take Tylenol almost around the clock. My blood cultures did come back during this time and were negative for infection.
That brings us up to today, Wednesday, December 17. My fever is gone, but my lab work today showed that my hemoglobin is low (7.5). While all of my other counts (white blood cells, platelets) have started to come back up my hemoglobin is falling. Tomorrow, Thursday, December 18 I will go in for an outpatient blood transfusion. This will be my second transfusion. The first time they did not catch my low hemoglobin until it was 6.6, this made me have to receive the transfusion inpatient as it was necessary to get it that same day. That time I received 3 units of packed red blood cells, tomorrow I will receive 2. This should be enough to boost my hemoglobin to above 9 and prevent me from needing blood over the holidays (hopefully). Despite the fever and blood transfusion I have not felt as bad after the chemo with this new regimen. Hopefully this continues to be the case, and that the next round I will not have the fever and low hemoglobin to deal with.
As far as Christmas celebrations go, Marissa’s family got together this past Sunday while her mom and grandmother were in town. With my fever I was not able to go, but Marissa did bring me home a plate of dinner which I did get to enjoy. My family is planning on coming to Georgia to visit and celebrate Christmas the Saturday after Christmas. I am very excited about this as my siblings have not ever even seen our home in Georgia. We have decided again to travel to Houston for my next round of chemo, we are more comfortable with my care and treatment there. We will be leaving on December 31 with my chemo being scheduled inpatient to begin on Friday, January 2.
Marissa and I wish you all a very Merry Christmas filled with family and loved ones and a safe, happy, healthy New Year.
Saturday, November 8, 2008
When Sharon, our nurse, called us with my lab report she told me that my hemoglobin was only 6.6 which was very low. She said she was calling Dr. D’Amato because she felt I needed a blood transfusion. Sure enough, about an hour later Marissa and I got the phone call to go to Emory Crawford Long for a 23 hour admission and blood transfusion. Upon arrival the doctor told us that they normally administer transfusions at 7.0, and that if I had been older and my hemoglobin was that low I would not have even been able to walk. We felt this explained why I was still feeling so weak and so tired. The doctor was also very impressed that I had not ever had a blood transfusion prior to this, and she told us this would make me feel better within hours. I was definitely looking forward to that.
We checked into the hospital at around 2:30 pm on Tuesday 11/4/08. I was typed and cross matched and it was confirmed that my blood type is A+. At around 9 pm I was given my first of three units that each take 3-4 hours to run. I was given each unit back to back throughout the night. It was a long night as the nurses were in taking my vitals and changing out my IV often. This was also election night and as soon as Obama was elected President people came out of the woodwork to celebrate, scream, and honk their horns in downtown Atlanta. This began at 11 pm and lasted until 3 am when police finally arrived and soon after the streets were quiet. The next morning my labs were drawn again, and I would be discharged based upon the results. At 11 am my results came back. My hemoglobin increased to 9.5, but unfortunately I wasn’t feeling much better as promised. My lab work revealed that my potassium was only 2.7. The low end of normal for potassium is 3.5 so 2.7 is low, and it had dropped from the day before. This most likely explained why I still was not feeling very well, as well as my poor night’s sleep. I was going to have to stay in the hospital for another 4 hours to receive potassium through IV fluids. I told the doctor that my home health nurse could come and administer the potassium, so the orders were faxed, and I escaped staying prisoner in the hospital. I was discharged around noon on 11/5/08.
Thursday, 11/6 I felt some better but not much. I received potassium at home and my blood work showed my potassium was up to 3.1. Friday, 11/7 I was given more potassium at home which should have been enough to bring my levels up to 3.5. I finally began feeling significantly better on Friday and was able to get out, for more or less the first time in 2 ½ weeks, with exception of my hospital adventure.
This was the hardest round I have had, and I hope it is better this coming round. I had a fever higher than normal, my white blood cells did not return to normal as quickly as usual, of course my low hemoglobin, and my low potassium all added to my “routine” symptoms. As a side note I received my results from the MUGA scan (the heart test I had 3 weeks ago), and my heart is functioning just fine. We are definitely thankful for this news. I begin my 8th round of chemotherapy on Monday, November 10. I had very few “good” days this time and chemo time has come all too soon. This round I will speak to the doctor about altering some of my precautionary antibiotics as with our research we have found I should not be taking Levoquin with low potassium, as it may contribute to that, as well as having a low white blood cell count. Too bad we are just now figuring this out. We will see if a new antibiotic alleviates any of my post chemo symptoms. It is hard to predict as my chemo and my antibiotics, as well as several other factors, all result in the same symptoms. This is my last round of this chemo regimen, next round I begin one that is not supposed to be so hard on me. I really hope this is the case, and as far as round 8 goes we are praying it is not nearly as hard as the last.
Monday, October 20, 2008
The plan for now is to continue with two more cycles of the same chemotherapy (Adriamycin and Ifosfamide). The Adriamycin can be hard on the heart so it is usually stopped after 6 rounds. However, Dr. Trent feels confident that it will be fine to continue another 2 rounds of this regimen. A heart scan is scheduled just to be completely sure it has not had a negative effect on my heart. After those next 2 rounds I will do 4 rounds of only high dose Ifosfamide. This can still be done at Emory Crawford Long in Atlanta, but it will have to be done inpatient. I am not looking forward to a week hospital stay every 3 weeks, but thankfully this will only last 4 rounds. Then I will do another 4 rounds of chemotherapy that consists of a daily injection for 5 days every 2 weeks. This can also be done in Atlanta and is not supposed to have as many side effects as the other chemo drugs. We will continue to travel to Houston every 6 weeks for tests.
As for now, I have started my 7th round of chemotherapy today, October 20. With each new round my symptoms seem a little more persistent and they linger a little bit longer. I am excited to be moving on to chemo that may not take such a physical toll on me.
We thank everyone for their constant prayers. We firmly believe I keep getting such great reports because of everyone’s prayers. It is very important that the chemotherapy continue to work and that my masses do not become resistant to the chemotherapy. We ask everyone for their continued prayers, praying that the chemotherapy continues to work and remove the cancer from my body, as well as continued blessings into the future. Again, we are grateful for our wonderful news, and also the support of family, friends, and even kind strangers.
Tuesday, September 30, 2008
Thursday, September 4 began my long battery of tests. Around 11am I started the tests with lab work and a chest x-ray to follow. At 4:40pm my abdominal and pelvic cat scans were scheduled to begin. Last time I had to have a cat scan it was a ten hour day so I was definitely dreading all of the wait time. However, this cat scan was scheduled at a MD Anderson building across from the hospital and when we arrived we were 1 of 4 people waiting. Marissa and I left there by 6pm which was much better than the previous time.
Friday, September 5 we were to meet with Dr. Trent at 11am. After two long hours of waiting for him, we received the news that we had been praying for. The chemotherapy was working even better my 3rd and 4th rounds of chemotherapy than it did my 1st and 2nd. Overall my masses had shrunk by 30%. Marissa and I were so excited, as was Dr. Trent. He also told us that I would be continuing the chemotherapy for as long as it continued to work so well. This was not the exact news that I wanted to hear, but I still felt tremendously excited that all was working so well, which makes enduring all of the chemotherapy a little easier and definitely worth it.
We left to return home immediately after our doctor’s appointment. This time however, we decided to stop sooner to find a hotel. We arrived home on Saturday, September 6. We used the rest of the weekend to run errands and prepare before my 5th round of chemotherapy, which was scheduled for Monday, September 8.
My 5th round of chemotherapy was not an easy one, and the following week was even worse. On my “good” week Marissa and I celebrated our 4th wedding anniversary, and I just enjoyed feeling so well. My one “good” week goes by entirely too fast, and before I know it, it is time to start my chemotherapy again.
That leads us up to this week. I am on my second day (Tuesday, September 30) of my 6th round of chemotherapy. I have begun feeling worse sooner this time. After this round of treatment we are scheduled to return to Houston yet again, for more tests. We will be traveling the week of October 13, and hopefully will be able to return home as quickly as we did last month, especially after this last hurricane, “Ike”, we are not sure what shape we will find Houston to be in.
We are rejoicing in the wonderful news I received. We thank everyone for their continued prayers, and we pray for continued blessings this next visit to Houston as well as into the future.
Friday, August 22, 2008
Monday August 11, 2008 we met with my new doctor in Georgia, Dr. D’Amato at Emory Crawford Long. She came to Atlanta from Tampa to start up a Sarcoma Department at the hospital. Dr. D’Amato was very informative and very personable, and Marissa and I both really liked her. My chemotherapy was scheduled to start on Monday August 18, 2008.
The rest of the week we spent unpacking, settling back into our house, and getting reacquainted with our dogs. I went to work to visit everyone and catch up on all that had been happening, and Marissa went and watched Jack a couple of days. Saturday we had everyone over to hang out and have pizza before chemo began again, it is so nice being home and having visitors.
Monday August 18, 2008 we left for Emory Crawford Long at 7am. We didn’t get home that night until 7pm, and we were both exhausted. The day was filled with my usual chemo regimen but the staff had to familiarize themselves with my orders and medications. It took a little longer because typically a patient receiving my chemo at this hospital is admitted all week as an inpatient. Since I preferred to remain outpatient the typical little kinks had to be worked out. Marissa and I also had to get used to the way Emory Crawford Long does things-everywhere is different.
Round 4 has not been as bad as Round 3, and I am thankful for that. I have experienced some nausea and definite fatigue. As soon as we get home at the end of the day I eat dinner and go right to bed. It is great being back in my own bed. The days are very long and the commute is tiresome, but I would still rather deal with that than be confined to the hospital for 5 days. Also, the nurses are quite nice and since it is a small facility I see the same nurses daily, and they already know me.
We have a week and a half at home to rest and then we leave again for Houston. We are praying everything is still working as it should be and we will only have to stay there for 4 days. As of right now we do not have internet at home, so I will just continue to post when internet is available and as I am able.
I also wanted to thank everybody back in West Tennessee for all of their hard work in planning and hosting such a successful spaghetti supper in my honor. The turnout was huge and it sounds like it was a great time. I wish we could have been there. I know there are a couple of other benefits in the works and coming up soon and I just want to thank everybody involved, please know how truly appreciated everything is, thank you all again.
Monday, July 28, 2008
Marissa's mom came on Sunday, July 20, and I was feeling good enough to get out and go places with her and Marissa. On Monday, July 21, we received a call that our name was taken from the free apartment list and that a free apartment was available for us to move into. Fortunately Marissa's mom was here to help Marissa pack, load and unload the car. We moved into our new, "free" apartment on Tuesday July, 22. It is nice and new but very small, much like an oversized hospital room with the same tile flooring. But, we were just happy to be there and save some money on rent. We are still enjoying everyone's cards but we ask that they are no longer sent to our old address on Brompton Rd. as we will no longer receive them.
My parents came on Tuesday, July 22 to be here for my testing and results. They were able to stay at our old apartment as the rent was paid up until Monday, July 28. Wednesday, July 23 began my 10 hour day of testing. It started with blood work, then I had a chest x-ray, and lastly I had a cat scan of the abdomen and pelvis, which involved a 4 hour wait.
Thursday, July 24 I had an appointment with my oncologist, Dr. Trent. He was to discuss my test results with me. My appointment was scheduled for 4 pm. Dr. Trent was running 2 hours behind which of course meant more waiting. We had high hopes that the chemotherapy is working and two doctors hinted that they thought that it was, however we were still a little anxious as we had no concrete results. When we finally met with Dr. Trent we were told the wonderful news that the chemotherapy has shrunk my tumors significantly. I asked Dr. Trent if they were smaller even than he would have thought and he said that yes, it was shrinking the tumors more than he expected. We could not be happier or feel more blessed by this news. We decided to start Round 3 of chemotherapy in Houston since we are already here, but we are planning on returning home for my next round of chemotherapy. We hope to leave for Georgia around August 8 as long as my white blood cell counts are normal. Then I would start chemotherapy there around the 14 of August, and then we would return to Houston the first week of September for another round of testing including a cat scan and then meet with the doctor for those results.
Well, that about sums up the last couple of weeks. We are delighted by my fantastic news, and I could not have asked for a better birthday present. I am on my third day of my third round of chemotherapy. I am feeling pretty good, just very tired. We are looking forward to returning home and seeing our home makeover, getting our dogs back, and of course seeing family and friends. Thank you so much for all of the prayers which we continue to ask for.
At the rate at which I make posts, hopefully next time I write I will be writing from home in Georgia.
Wednesday, July 9, 2008
On Saturday June 28, I was feeling so much better that we decided to venture out. After looking up “101 Things to Do in Houston” which included on their list a tour of MD Anderson Hospital and scouring the hospital waiting rooms for celebrities, we knew we had to look outside of Houston for our entertainment. The one item on the list that actually caught our eye was a visit to Old Town Spring, a small town outside of Houston with “over 150 eclectic shops.” We had a good time and true to its description Spring had tons of little boutiques in old houses and cottages. We had bar-b-que on an old caboose, and we enjoyed being tourists for the day.
Sunday June 29, we enjoyed a day of rest while we waited for my brother Frankie and his wife Doris to arrive from West Tennessee. Frankie and Doris arrived around 10 pm. As excited as we were for their arrival we had only a brief visit and we quickly retired.
Late Monday morning, June 30, after catching up on rest and missing breakfast, Frankie and Doris picked us up and we went to lunch at a local bar-b-que restaurant. Although I was feeling better with each passing day my poor appetite was the one thing that really lingered. Lunch was fantastic, but I ended up taking most of it home with me. Despite the fact that we all slept in, we decided that an afternoon nap was just what we needed. Frankie and Doris came back over around 6 pm, and we opted for another Astros game. We did learn something from our previous Astros experience that it is okay to buy tickets at the gate. Houston Astros’ games never sell out, unlike the Atlanta Braves.
Tuesday July 1, Frankie and Doris were planning to leave around 9 am, and my parents decided to leave and ride back with them to give us a little space and take care of things at home. They told me they would come back at the drop of a hat if I needed them to.
So now Marissa and I are on our own with all of our families on standby. Wednesday July 2, we had an appointment with an occupational therapist to go over my wheel chair assessment, that we had requested a month before when my pain was at its worst. MD Anderson actually measured me to fit me for a new wheel chair that is rented on a month to month basis. It can be kept as long or as little as I want, and it can also be picked up and returned even if I go back home to Atlanta for treatment. Wednesday was also a day of errands as I was scheduled to start chemotherapy again on Thursday. This way we would have anything and everything I could possibly need so Marissa would not have to leave me alone during my treatment. We saved the best errand for last, to go to the Social Security Administration Office and enroll for Social Security Disability. While we thought this would be a nightmarish task, it actually turned out to not be so bad. A couple of nice gentlemen helped us, and we were out of there in about two hours.
Thursday July 3, I had routine blood work in the morning as well as a chest x-ray. I had an afternoon appointment with Dr. Trent just for a check-up and question/ answer session before I began my second round of chemotherapy. He said that my blood work came back normal and that my chest x-ray was clear. This in itself was great news because had these tests not come back normal I would not have been able to start my second round of chemotherapy. Dr. Trent was interested in how I tolerated round one of chemotherapy. Since my nausea began on day 3 last time and lasted until after it was over, he added a long lasting nausea medicine to my daily chemo regimen. He also prescribed Diflucan, an anti-fungal medicine, to prevent me from getting thrush again this round. I was also prescribed Levoquin, an antibiotic that will prevent infections. This will hopefully prevent me from ending up in the Emergency Center with another fever. He followed up with a physical exam. After feeling the mass in my abdomen he said that it appeared to be softening. He commented, “That’s encouraging,” which we hope we did not take out of context because most doctors, and especially Dr. Trent, are not into making comments for the sake of encouragement. Overall we were thrilled with the news, and we proceeded to check in for chemotherapy after 5 pm.
Friday the 4th of July we reported to the Cancer Center for day two of chemotherapy. During the chemo treatment all I could think about was being in the Cancer Center on the 4th of July. I had to see some fireworks to liven my spirits. I asked the nurse where we could catch the best show of fireworks and she said without a doubt, Clear Lake City. Clear Lake City turned out to be about a thirty minute drive, and my IV drip was scheduled to end at 7:50 pm. We knew the schedule was tight as we rushed out of the Cancer Center. The fireworks were scheduled to begin at 9:30 pm, and I couldn’t miss the show. We drove into Clear Lake City around 9:15 pm, just in time to sit in a traffic jam on the bay bridge. As it turned out that traffic jam ended up not moving for the entire duration of the fireworks, giving us a perfect view of the show over the water.
Saturday and Sunday, July 5 and 6, were both uneventful days. Life as a cancer patient on chemotherapy becomes a cycle of 21 days, with day 1 being the first day of chemotherapy. Saturday, Sunday, and Monday (days 3, 4, and 5) I felt much better than I did on days 3, 4, and 5 of the first cycle. I did not experience the nausea as I did previously, but on days 6, and 7 (Tuesday and Wednesday) I felt worse than last time.
Today, Wednesday July 9, I am still feeling incredibly fatigued, but fortunately that is really my only complaint. As the chemo works its magic it takes some “good” cells with the “bad” ones. They warned me about “chemo brain,” the effect the chemotherapy would have on my mental capacity. I have noticed that my thoughts are not as clear, and that my attention is not as devoted. This has shown an effect on my blog posts. The solution may be to blog more often so that I do not have to remember as much, we’ll see how that goes over. Special thank you to Marissa for helping me remember past days and typing my posts as I lay here and dictate.
"The Card Wall" in our Houston Apartment (which has now turned he corner)
The best picture we took of Old Town Spring - June 28, 2008
Saturday, June 28, 2008
From Left: Christine, Gary, Ashleigh, Maison, Owen (top), Jack, Meaghan, Nathan, Marissa, Me
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Houston Astros vs. Milwaukee Brewers June 10, 2008
From Left: Hunter, Dawson, Me, Marissa
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Mom and Dad at the Astros Game
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IMAX movie at the Houston Museum of Natural Science June 22, 2008
From Left: Chris, Me, Chad
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Wednesday, June 25, 2008
As you know, as of late Friday night, I really hadn’t felt any effects of chemotherapy. When I woke on Saturday morning, it was a different story altogether. I had come down with flu-like symptoms, nausea, vomiting, lightheadedness, fatigue, etc. You name the symptom, I had it. Needless to say, the next few days were little more than a blur. I really thought at the time that I was conscious and coherent. I realized later, maybe around Wednesday or Thursday that I was not. I spent most of Thursday and Friday catching up on the few days of my life that I had just missed. I returned telephone calls that I had missed, reread all of the blog comments, reread emails, and reviewed all of the mail that I had received. The mailbox at the apartment is full of cards every day. I must tell you, nothing lifts my spirits more than reading all of your cards, blog comments, and emails. I really wish that there was some way for me to acknowledge each one. Please know that each one is greatly appreciated.
Late Friday afternoon, June 20, I had developed a low grade fever. Fever, of course, is bad news for a chemo patient. Tylenol is off limits, because as a fever reducer, it masks the signs of infection. I have strict instructions with regard to monitoring fever, if it reaches 101˚F I must go straight to the Emergency Center. Friday evening, I was nearing 100˚F. Marissa stepped out for a moment to “make a phone call”, and returned to the apartment with a group of my friends from Tennessee. Chad Dunivant and his wife Jessica, and Chris Chandler and his wife Amanda had made the 13 hour drive to visit. The whole weekend had been planned without me. I was completely caught off guard when they walked through the door. It could not have been a better surprise. Over the next few hours my fever had dropped. I even felt good enough later in the evening to go to their hotel room and visit for a couple hours.
After returning back to the apartment for my nightly medicine regimen, I turned in around midnight. I managed to get a couple hours of uninterrupted sleep. Around 3:30 am I woke with a fever. It had returned, this time a little more severe. I lied in bed for a while, wondering what to do, wanting to go back to sleep. I decided that I should wake Marissa and check it out. The thermometer read 101.3˚F. I guess this meant another trip to the Emergency Center. At least this time I wasn’t going in for unbearable pain. We ended up staying in the EC for about 8 hours. During my EC stay, my fever reached nearly 103˚F. They got my fever under control with Tylenol, gave me a few antibiotics through my IV, and prescribed me a whole host of new medications to take home to treat any infections I may have as well as to treat the thrush I was also diagnosed with. Thrush is an infection that lives in the mouth and throat and that is painful all the way down the chest into the esophagus. It can be caused by oral antibiotics, which of course for me at this time are plentiful. They also took some blood and urine cultures to check for infection. The cultures, they said, would take 48 hours for results. The antibiotics were precautionary.
After getting out of the EC around lunch on Saturday, I spent the rest of the day sweating out my fever. My visitors were able to come to the apartment Saturday evening and watch a movie. I just didn’t feel up to doing much more. Sunday morning turned out to be a different story. I woke up feeling good. I had a few appointments to make at MDA in the morning, but I was able to meet my friends around lunch and spend the rest of the day exploring Houston. We ate lunch at Chili’s, where I decided to splurge and order a kid’s ribs and fries meal. This was the most I had been able to eat since the chemo. After lunch, we went to Houston’s Museum of Natural Science. We saw exhibits on geology, dinosaurs, and Leonardo da Vinci. We also were able to catch an IMAX movie on the Grand Canyon. I was definitely feeling good on Sunday, and I was able to take advantage. The day ended with an Italian dinner at Prima Pasta around 10pm. I was completely exhausted, but in a good way.
My friends left Monday morning around 9:30 am after meeting me at the hospital for a quick tour and breakfast. Having them come and visit was definitely medicine for my soul and a terrific surprise. They did not get home until midnight on Monday, and they all had to be up bright and early Tuesday morning to get back to work. I cannot express to them how much their visit meant to me. The rest of the day I had a quick follow up appointment in the EC where I was told my white blood cells were back to normal. On Saturday they were at 0.6, Sunday they were slightly higher at 2.3 and on Monday they were at 10.2. The normal white blood cell count is 10, so everything is back on track with me regaining my strength and immune system, much quicker than expected. I guess that is just the healthy 25 year old in me making that rebound.
Tuesday was another great day for me. I did not have any appointments so the entire day was mine to enjoy. The nurse practitioner called me for a follow up consultation on the phone. My blood and urine cultures came back, and they were both normal with no signs of infection. I count my blessings and rejoice for each good day I have and all the good news I receive.
That brings us to today, Wednesday, June 25. I had an early appointment for lab work this morning, but we did not quite make it there on time. I woke up and took my shower with a full head of hair only to step out and notice that in that span of twenty minutes most of my hair had fallen out. Rather than leave the house with only small patches of hair I had my mom shave my head quickly before my appointment. I knew losing my hair was part of the process, and I suspect in a few days the rest will be gone. After my lab work I was met at the apartment door by the FedEx delivery man. Again, I found myself surprised. My coworkers at Gwinnett Sprinkler all pitched in to replace my IPOD after reading that it had been stolen out of our car. So not only do I have an IPOD again, but this new one is even better than the one that was stolen. This afternoon I have another follow up call with the nurse practitioner in the ER. Friday is my last follow up appointment with the Emergency Center for my neutropenic pathway (this is MD Anderson’s special program for monitoring patients with low blood counts). I am feeling well enough to get out and enjoy my free time. This is the best I have felt in a long time as I am pain free and able to walk on my own without my wheelchair. Walking is great exercise for me. The weather is so hot here that we usually try to avoid outdoor activities and today I think we will visit the local mall for the first time.
I have received countless calls inquiring on the status of my posts. I am astounded by the number of people who check my blog numerous times throughout the day and I apologize for the delays, but as always I remain grateful for the prayers and support.
***Happy Birthday to Meaghan, June 25, we wish we could be there to celebrate with you, but we hope you have an awesome day and we love and miss you!!
Friday, June 13, 2008
As we were leaving the apartment Thursday morning to go to our appointment, my dad went to pull the car around and noticed it would not start. After further inspection he also discovered the side window was broken out. I assume that the alarm system worked because the hood was up and the battery disconnected. Someone had broken into our car and stolen our IPOD and FM tuner out of the glove box, as well as our GPS power cord and mounting bracket. Probably much to their disappointment we had the actual GPS unit with us. We did not have time to evaluate further damage as we still had an appointment that wasn’t going to wait. We had just missed the shuttle bus from our apartment to the hospital by ten minutes. The bus, however, doesn’t include provisions for my wheelchair. Our car insurance has a deductible, so there probably wasn’t even enough damage to claim. Much of this apartment complex is dedicated to cancer patients. Also, my wheelchair was in the car, untouched. But, in my opinion, that is one desperate thief to steal from a cancer patient’s vehicle. God bless him/her. It appears that the earliest appointment for the window replacement is Wednesday, June 18. The internal contents taken from the car must go on homeowners insurance, which is of course filed under a separate deductible.
The first appointment on Thursday was with Dr. Lalani, a pain management specialist. This was a follow-up appointment that had been scheduled last week when I was discharged from internal medicine (inpatient). I was glad to have this appointment set up because over the last three days my pain symptoms have gotten worse. The nerve pain seems less and less responsive to the medications prescribed to treat it. The major downside to it all though is that the side effects (e.g., drowsiness! etc.) are showing up stronger than ever. I have discovered that chronic drowsiness is the most debilitating feeling that I have ever experienced. Dr. Lalani decided to add a few new additions but took none away from the regimen. Obviously, I was a little concerned that adding more narcotics was going to make me drowsier. Dr. Lalani said that it takes my body about a week to acclimate. He promised me that in a few days I would see a 70% - 80% decrease in drowsiness.
After a quick appointment with Dr. Lalani, Marissa and I set off for the Infusion Therapy clinic. For our 11:00am appointment we arrived at 11:05am. We were taken from the lobby waiting area around 11:45am. They started with vitals, and then placed me in a room very similar to an inpatient room but a little more lavish. The drugs were all explained again by the nurse, but it was all a little too much to absorb in one sitting. I have 3 main chemotherapy drugs: Ifosfamide, Vincristine, and Doxorubicin. There are a couple of others that are administered along with these three main ones for side effects. I do not know all of the details on these. The Ifosfamide is given at the first of the appointment. It is set up for a 30 minutes drip time. The Vincristine is set up simultaneously with the Ifosfamide and set up for a 4 hour drip time. The Doxorubicin is set up late in the appointment. It is set up for a 24 hour drip time along with a 24 hour drip of mesna, some type of side effect medicine. So far all is going great with the chemotherapy. I have not seen any effect of nausea, fatigue, vomiting, etc. The only thing that I have noticed is a slight aversion to my dinner tonight. My tastes seemed a little off and nothing seemed appetizing. After four hours in the chemo treatment, the nurse says a simple, “You’re done! I’ll see you tomorrow…” The treatment doesn’t feel any different than receiving a standard saline solution.
After chemo treatment on Thursday night, we all came home to an apartment with no cable. When we signed the lease on the apartment last Friday, we were told that cable was turned on in the room but billed under the previous tenant’s name. They said when the cable month expired we would need to transfer it into our name. The previous tenant did in fact have TV service but did not have internet. We decided to call Comcast to see if we could just add internet. Comcast said that they did not show record of any type of service since December, 2007. We spoke with a Comcast rep Saturday morning outside the apartment who was nice enough to handle the whole situation for us. He gave us a package deal on the internet and TV, changed the service to our name, and personally came back on Sunday to connect the service. He also said that since we had alerted Comcast of service in the apartment, they would schedule someone to disconnect it. Thursday night, June 12, we arrived and had no internet and no TV service. It quickly became apparent what had just happened. The rep took care of our service hook-up quickly over the weekend and Comcast had scheduled our “Free Cable” to be disconnected during the day on Thursday. My dad quickly scheduled a service call for Friday to reconnect the service. We were assured that no one needed to be home for the service call. Friday evening we arrived home to find once again that the cable was still down. A call to Comcast revealed that, “the tech knocked on the door, no one answered, and he postponed.” The next available appointment is Wednesday, June 18.
To top off the Friday the 13TH story, we also arrived home Friday evening to not only find that the cable was still down, but now the air-conditioner was down and there was no hot water. A quick call to the after-hours line at the apartment complex saw a repairman in about 30 minutes to address both of these problems. If only Comcast had this type of customer service.
Back to medical topics for a moment, I had a follow-up appointment with Dr. Lalani Friday morning. He had scheduled a pain block steroid injection in my spine. The two shots were located between the L4 and L5 vertebrae. The injections came with a little bit of local anesthesia. The Doctor said the anesthesia would block my pain for approximately 6 hours. After 6 hours, the pain would return for about two days until the steroids started to take effect. The half-life of the steroids is approximately 3 weeks. Having this long-term pain relief should allow me to stop taking the fast-acting Dilaudid pain pills. I think these are the ones causing the bulk of my drowsiness. Also, Dr. Trent thinks that the Chemo, if effective, could shrink that tumor enough in as little as 3 weeks to relieve that nerve pain permanently. I could not be more excited at the idea of permanently relieving this hip pain.
In summary, we have had mixed emotions over the last two days. Always mentioning the positive first, my first chemo treatment is well on its way, and my hip pain is seeing some much needed relief. On the other hand, we were victims of theft from our unattended vehicle, we lost our cable, internet, air-conditioning, and hot water. Fortunately, the latter two have already been addressed.
Wednesday, June 11, 2008
Sunday morning, after a decent night’s sleep, we decided that we needed to run some errands. I was able to get out a little and see Houston. We went to Target to pick up some things that we forgot to pack, then went to the Holocaust museum of Houston. We also ran a couple of other errands, trying to fill the day, as we were all anxious for Monday morning to come.
In late afternoon we got back to the hotel to enjoy the much needed air conditioning. Houston is setting record high temperatures that make simple tasks exhausting. After trying to get some rest I could not get my pain to subside. The pain is a little different than what you would expect, it actually worsens while lying down trying to rest and is better while being active and moving around. Of course you cannot be active 24 hours a day. Because of this I have increased anxiety about the nights and the pain that comes along with them. The pain medicines that I have been prescribed allow for extra dosages as needed. I regulate my medicine saving the extra dosages for the nighttime. Sunday night at 10pm I took my extra dosages. At 11:30pm the pain I was experiencing was worse than ever. The decision was made to go to MD Anderson’s Emergency Center. I arrived around 11:45pm and fifteen minutes later was with the doctor. The doctor decided to start an IV and a course of Dilaudid. One hour later, I had no relief. They started another round of Dilaudid. One hour later, still no relief. They then decided to supplement my Dilaudid IV with very strong Percocet tablet. Again, one hour later, still no relief. At this point I am getting a little concerned that the doctors cannot come up with a solution to relieve my pain. However, they seemed unconcerned, and tried yet another round of Dilaudid. This time, though, they gave me double dose, which finally brought relief. This relief finally came around 5am and I was able to catch an hour or two of sleep. Around 7am, I was discharged from the Emergency Center and sent home.
When we left the Emergency Center, we headed straight for the Sarcoma Center admissions desk. We had been speaking with the people at this center all during the previous week, so they knew who we were and were familiar with our case. They were, however, very surprised to see us show up in person. We have learned the hard way that there is a lot of red tape to cut through before receiving care at MDA.
We were told by Dr. Sharma that MDA had received everything that they had requested with regard to medical records, pathology slides, scan and x-ray films, etc. Tamara, our assigned case worker with MDA, told us that she had not received this information. She also told us that we could not just show up at the front door and receive care. I think she misunderstood our intentions. As we explained our situation, she began to sympathize and reluctantly help us gather information. She reluctantly agreed to try to expedite our pathology report. She also began running down all of our insurance coverage details. She said that she would let us know when she had either a question or an update. Our day ended much like it began, with a clear objective…hurry up and wait.
The rest of Monday was quite uneventful. I was feeling the effects of a night full of intravenous pain killers. I was able to obtain some much needed sleep, as I hadn’t slept but roughly 6 hours in the last 48 hours. I woke up in late afternoon to the sound of rumbling stomachs. Marissa, my mom, and my dad were discussing dinner plans. We drove around searching for the one meal upon which everyone agreed, Taco Bell. And not just Taco Bell, we decided on 4 Taco Bell kid’s meals. Also, while I had slept, Marissa had discussed my inability to manage my pain with Dr. Sharma. The pain medications that were prescribed were becoming less effective with each dose. At the time, I was taking Percocet 10mg/650mg, Neurontin 600mg. Dr. Sharma said that she could write a prescription for a tablet Morphine (MSContin 20mg). She tried to call in the prescription to a Texas Walgreens, but apparently MSContin has strict governmental regulation and could not be called in to Texas. The work-around: Marissa’s sister Meaghan volunteered to go to Dr. Sharma’s office in Georgia pick up the prescription, have it filled at our local Walgreen’s, then Fed-Ex the package to me early morning overnight delivery.
Monday night, as I expected, was another sleepless one. I think I took 8 showers throughout the night, both as a pain reliever and as a way to pass the time, alone, as everyone slept. The package containing my morphine was scheduled for delivery around 7:30 to the hotel front desk. It arrived promptly, as I was sitting in the lobby, anxious for the arrival of the truck. I made my way back to the hotel room for a glass of water to wash down the pill. I was surprised to see that the maximum prescription I could receive was only 9 – 20mg pills. The number of pills in the bottom of the small pill bottle did not even cover the bottom.
Tuesday morning we were informed by the hotel front desk that we had not made adequate reservations for our room. We were told the hotel no longer had any vacancy and that our room was no longer available. After getting a little pain relief from the morphine tablets, we set out to find a new room. The only hotels with room vacancies were not fit to stay in, so we had to stay in a hotel twenty miles out of town. Our hotel reservations later became irrelevant because shortly after check in my pain returned. I again made the decision to return to the Emergency Center at MD Anderson.
The doctor on staff at the EC happened to be the same doctor from Sunday night. Fortunately I was able to skip the description of my pain and I was immediately administered the effective doses of pain medication. I had however one new pain symptom-in the right side of my chest, shoulder and neck. The doctor was worried I may have a blood clot causing the new pain so a chest CT scan was ordered as well as an x-ray of my left leg to ensure the cancer had not metastasized into my leg. The tests came back clear but consumed the night, and everyone ended up sleeping at the EC waiting area. Thankfully the hotel was kind enough to not charge us for the night.
Wednesday morning I was admitted as an inpatient at MD Anderson via Internal Medicine for the purpose of “pain management.” I was admitted to Internal Medicine Department as my pathology report was still incomplete. Had the pathology report been completed and reviewed I would have been admitted to the Sarcoma Department and monitored by Sarcoma specialists. At this point we were all excited to be admitted not only to manage my pain, but we were also hopeful that this would instill a sense of urgency in the Sarcoma Department. We were told upon admission that this would likely be a three or four day stay.
Over the next few days our reasons for excitement were realized. We began to see one doctor after another seemingly hour by hour. As an inpatient the first priority was to get my pain under control. With the pain management doctors came many new medications and dosages, and by the end of my stay my pain seemed to be managed. Also during the inpatient stay the doctors began running additional diagnostic tests for the purpose of verifying and locating my tumor. These tests revealed a possible misdiagnosis in Atlanta, not in the diagnosis of sarcoma, but the fact that there were multiple abdominal and pelvic tumors rather than a single large tumor. The tests also confirmed the malignancy of the spot seen on my liver and revealed additional malignant spots on my lungs. They told me that a large portion of my pain was the result of bone lesions.
On Thursday the pathology report was finalized. A meeting with my new sarcoma oncologist, Dr. Trent, on Friday revealed the results of the report. My official diagnosis was Desmoplastic Soft Round Cell Tumor, which is an incredibly rare variety of soft tissue sarcoma. We have since learned from the oncologist that only about twenty people are diagnosed with this type of sarcoma in the U.S. a year. M.D. Anderson sees about six of these patients a year, as does Sloan Kettering in New York and the rest of the cases are with various oncologists across the U.S. Dr. Trent told me that I was no longer a candidate for surgery because the cancer had spread. He wanted to start chemotherapy as soon as possible. He said that radiation was not an option because of the proximity of the cancer to my vital organs. We made the decision to start chemotherapy on Wednesday, June 11. He said that the first cycle of chemotherapy would last six weeks. At that point all of the diagnostic tests would be performed again to determine the effectiveness of the first cycle of chemotherapy. I was advised to seek more permanent housing for this period of time near the medical center.
Friday, June 6, I was discharged from inpatient services. My pain medications had transitioned from intravenous to oral medications. I was now able to maintain comfortable levels of pain without being an inpatient. We had placed a call earlier in the week seeking an apartment anticipating a long term stay. Our name was added to the waiting list and not knowing when we would get an apartment we were headed back to a hotel. Just as we were completing the discharge paperwork we received the news that we had received an apartment, and we all knew that this was Providence. As we left the treatment center we had an overwhelming sense of relief. My pain was under control, my cancer was diagnosed, a treatment plan was outlined, and we were on our way to our new apartment.
Saturday was the first day any family had visited. My sister Lori and her husband Steve made the drive from Dyersburg, Tennessee, arriving around 10pm. Sunday morning we decided to drive out to the beach at Galveston. The forty five mile drive passed quickly, but unfortunately Galveston Island is not the beach lover’s dream. We had a nice lunch, drove along the ocean front, and returned home late afternoon. Sunday evening was spent as family time in the apartment. Monday morning as Steve and Lori started off for Tennessee Marissa and I returned to MDA for yet another round of testing prior to chemotherapy.
Tuesday brought more visitors. My other sister Tina, my nephews Dawson and Hunter, and family friends Ashley Roberts and Andy Grills arrived early Tuesday morning. They too made the long trek from Tennessee throughout Monday night. As they settled in and rested Marissa and I were off to MDA, this time for my subclavian catheter insertion. This line allows all medications and chemotherapy to be administered without having to get a separate IV for each hospital visit.
We had the idea that since Dawson and Hunter were visiting that they would thoroughly enjoy, as would I, a Houston Astros baseball game at Minute Maid Park. The Brewers were in town from Milwaukee and we were able to snag last minute tickets in the upper deck behind home plate. The Astros had a high scoring night that made the game a thriller. The game could not have lasted long enough as our visitors were returning back home to Tennessee Wednesday morning.
As our guests were heading out Marissa and I again went to MDA. This time for a pre-chemo blood work up. Afterwards we met with Dr. Trent to discuss any last minute questions or concerns regarding the treatment plan. The meeting ran longer than expected, into early afternoon. The nurse explained that the chemo treatments last 4 to 5 hours and that starting today would affect the schedule of the entire treatment plan. Rather than starting at 3pm and ending at 7pm every night they decided to postpone the start of chemo until Thursday morning. An appointment was scheduled for 11am Thursday, June 12. We were disappointed at the delayed schedule, but now all pre-chemo items have been addressed. Tomorrow begins our journey on the road to wellness.
Thank you for being patient. This post has been difficult to produce with all that has been happening, but now is that much more rewarding. Thank you very much for everyone’s continued response. Each and every comment has been so personally dear to me. I have really enjoyed all of my family’s visits so far and I look forward to future visits being planned with Marissa’s family and my brother. I also really appreciate all of the cards, care packages, and donations I have been receiving. The most important thing is continued prayers. Please pray for the chemotherapy to be a success and my healing to begin. Until next post, sooner rather than later.
Tuesday, June 10, 2008
We have also received many requests for information on financial donations. We have opened an account that will be receiving charitable donations for my healthcare and living expenses during my stay in Houston. We have been told by my Oncologist that we need to make arrangements to live in Houston for at least 6 weeks. After 6 weeks of treatment, I will have all of my diagnostic tests performed again to determine the effect of the first round of chemotherapy. If the treatment is considered successful, I will be evaluated to see if my treatment may be continued in Atlanta, and monitored by MD Anderson. If the treatment is unsuccessful, I will start again at square one with a lengthy stay in Houston. For those who would like to help with our financial burdens, the addresses are as follows:
First Citizens National Bank
C/O Diane Warren
104 North Monroe
Newbern, TN 38059
Please make checks payable to Bradley Dycus.
You will receive a receipt for your contributions. Please provide a return address for this.
Our home address:
638 Nottingham Drive
Lawrenceville, GA 30045
Apartment Address: ***As of 7/26/08 we are no longer receiving mail at this address***
7500 Brompton Road
Apt. # 557
Houston, TX 77025
Thank you for your prayers and your generosity.
Saturday, May 31, 2008
Marissa and I spent hours gathering records from every doctor’s office and clinic that I have seen in the last year. We were able to collect everything from dictation notes to microscope slides for our pending journey to Houston. On the last errand, which I wasn’t able to make, Marissa received a call from Dr. Sharma. She said that the documentation that we were gathering had already been sent to M.D. Anderson. She had personally gathered those documents and sent them ahead of us. She also said that she had spoken again with Dr. Sarma about the pathology report. Dr. Sarma made the comment that Emory would not be able to provide the care that I was going to need for the type of cancer that I had. The recommendation of both doctors was to cancel any remaining appointments that were scheduled locally and go to Houston immediately.
Marissa immediately came home, woke me up, and gave me the news. This news, of course, is something that we eventually wanted to hear, but it made me a little anxious to hear it the way that I did. We received confirmation from Dr. Sharma that this was not necessarily an emergency situation; it was just the fact that there was little doubt now where I would end up. Why waste time, right? Also, because of the severe pain that I have been having, should I need to go to the Emergency Room, I could do so at M.D. Anderson. The obvious benefit to that would be any treatment I would receive would be reviewed by an oncologist, so as to avoid anything that would have an adverse affect on my cancer treatment. I had debated several times going to the ER at Emory, but I was afraid that my cancer would be ignored in my emergency treatment.
Regardless the reasoning, we made plans to travel. The plan that we had laid out for this occasion seemed to work out flawlessly. Our dogs, Paddington and Yogi, were to go to Knoxville and stay with Marissa’s mother Christine, and her husband Gary. They happened to be in town visiting and planning to return home today. Marissa’s sister Meaghan and husband Nathan have volunteered to watch the house, as well as our neighbor Babbette. With regard to traveling, my parents Bill and Paula drove to Atlanta last night from Tennessee to travel with Marissa and me. My mom and I booked tickets to fly and Marissa and my dad decided to make the drive. With this arrangement, I did not have to make a 12 hour car ride from Atlanta to Houston, but it also prevents us from paying for a rental car for the entire stay as well. The flight left Atlanta around noon, arriving about two hours later. Marissa and my dad dropped us off on their way out and arrived in Houston around 8 p.m.
The admissions off does not open until Monday morning, so hopefully there will be no new news until then. If I do need emergency medical attention before then, however, I can check in to the emergency department. Until Monday, we will do our best to enjoy the new city, as winning the battle with cancer is 80% mental.
Thanks, as always, for checking in on the blog. Keep the prayers coming, and thanks for all your support.
Friday, May 30, 2008
As anyone who has spoken with me since I received this diagnosis will attest, I could not have a more positive outlook on my future. Clearly, with such a positive outlook, I believe that my doctors can and will provide me with the best treatment that is available.
Dr. Sharma, my family care physician, has been absolutely wonderful. She personally calls me or Marissa 3 or 4 times per day, just to see how I am feeling or to see if there is anything that she can do. I have never had this kind of attention from anyone in the healthcare industry, and I absolutely cannot thank her enough for all that she has done.
I received a comment from “Mary” on my previous post with some incredibly helpful information. Mary, if you are reading this, would you please send me an email so that I may ask some questions? Thank you.
Just as an update, we are still waiting to hear from MD Anderson Cancer Center. They are supposed to call me or Dr. Sharma sometime today. Dr. Sharma submitted all of the necessary forms for referral on Tuesday, May 27. Marissa also completed the documents for “self-referral” just in case. Both referral forms said that we should get a phone call within 72 hours to schedule an appointment. Dr. Sharma said that she would call today to check the status, as we are obviously very anxious to hear from them. I will make a post about this as soon as I receive that telephone call.
I had my PET scan performed this morning. I assume that everything went well. The radiologist will need time to interpret the results, and then hopefully Dr. Sharma will call me to discuss the results. If she doesn’t, I will have to wait until my next oncology appointment with Dr. Sarma on June 9. The MRI’s are still scheduled for Monday morning, and of course, if I receive any results from these tests, they will be posted.
Thanks again for checking in on the blog. And thank you for all of your prayers.
Thursday, May 29, 2008
I think that I need to take a moment to add a little background. I am 25 years old, otherwise healthy, and just lucky enough to snag the most beautiful girl in the world, my wife of nearly 4 years. Marissa has been at my side every step of the way and without her I would be fighting an uphill battle. As it is, with Marissa by my side, and with your help, I truly believe that there is nothing that I cannot beat.
Back to the background, I started showing some symptoms around 1 year ago. I would occasionally complain of some pain in my stomach. The pain would linger for a couple of days, but it was nothing that I couldn’t tolerate. And just as it came, it would go. I would feel great for a month or two, and then it would return. This occurred with some regularity over the next few months until I became concerned. In late December, 2007 I decided that I should have the doctor take a look.
Marissa had been seeing a Family Practitioner that she seemed to like, Dr. Sangita Sharma, so I decided to let her take a look. I visited with her just after Christmas, explained my symptoms and she seemed to be at a loss. She thought that perhaps it was bladder related, but wasn’t sure. She ordered a CT scan to further investigate her hunch.
After checking with my insurance company about the coverage of the CT scan, I was surprised to see that it was not covered at all. The out of pocket cost would be in the range of $3,000. At that point I really began to feel better, physically. The pain just seemed to melt away, as the thought of parting with $3,000 for a test that may or may not yield results concerned me. Dr. Sharma was outraged (at the healthcare system, not me) that my health care coverage seemed to be controlling my decisions about my health. She was sympathetic, and agreed to help me pursue other avenues.
Since the first hunch was bladder related, I was referred to Dr. Stark at Georgia Urology. My visit with Dr. Stark a few days later was quite uneventful. I received very little care from Dr. Stark in that visit, but rather had to listen to him rant about Dr. Sharma’s hunch that it was even Urology related. He ordered a CT scan as well and sent me on my way.
Well, of course, if I am not willing to pay for a CT scan for Dr. Sharma, then Dr. Stark is just out of luck as well. Obviously, it was discussed that I would not be having the scan performed, but he ordered the test anyway. I believe that I have relieved all doubt that I will no longer be receiving care from Dr. Stark.
After the horrible visit with Dr. Stark, I received a follow-up phone call from Dr. Sharma. We discussed the visit and that Dr. Stark seemed certain that it was not urinary related and decided that the next best place to visit would be the gastroenterologist.
A few days later, now early January, I went for a visit with Dr. Talapaneni at Atlanta Gastroenterology. After a short and, again, uneventful visit, Dr. Talapaneni seemed certain that it was not GI related, but would like a CT scan to verify. She also ordered a colonoscopy.
At this point, I am really getting the feeling that we are grasping at straws, and each time we are getting the short straw. Dr. Talapaneni said that she wasn’t sure what was going on either. Every doctor that I have seen wants a CT scan that I am not willing to have, and one doctor wants a colonoscopy. My Urologist thinks that I have a GI related problem, my GI doctor thinks that I have urinary symptoms, and my family care doctor is stuck in the middle. My decision seems easy. I have only a mild pain, which comes and goes at random. I decide to wait for insurance open enrollment with my employer.
Over the next few months, the symptoms began to become more persistent. As I mentioned earlier, the pain in my abdomen would come and go. As time went by, however, each “wave” of pain became more intense and stayed for a longer duration. The pain began to hang around for a week or two, whereas in the beginning it would last a day or two. Of course, as anyone else would, Marissa and I would research my symptoms on the internet. But with relatively few symptoms, we would always come up empty handed. It wasn’t until late one night, maybe early April, that I began to press on my abdomen and noticed a firm “mass”. I could press on it and really not feel any pain. I could, however, create pain with it. For instance, if I pressed on the left side of my abdomen, I would feel pain on my right side, and vice versa. At that point I began to put the pieces of the puzzle together. I had self-diagnosed a mass in my abdomen, that seemed to have no sensation of pain itself, but rather caused pain by pressing into the other organs in my abdomen and pelvis.
Fast forward to May 1, 2008. I reviewed the health insurance options with my employer, and opted for the best of the group. I now have a $1,000 deductible and 100% in-network healthcare coverage. I knew that I needed to have this checked as soon as possible, and had a hunch that it might require some type of surgery for its removal.
So……back to Dr. Sharma’s. I scheduled the CT scan for the first available appointment, May 9, 2008. I haad a CT scan performed with and without intravenous contrast. I was told to expect results by Tuesday, May 13.
I was working on Tuesday morning when I received a telephone call from Dr. Sharma regarding the results of my CT scan. She said that the results were in and that she would like to meet with me to discuss. I was asked to report to her office within one hour. Luckily, Marissa was not working on this day, so I invited her to come along.
As Dr. Sharma entered the office, she seemed anxious. As she began to read the radiology report, she became nervous and asked Marissa to stand by my side. The one thing that you never want to see from your doctor is emotion. Her anxiety was obvious as she read the report. The report said that a there was a mass in my abdomen, later described to be the size of a “nerf football”. At this point, I think Dr. Sharma was expecting me to show some emotion, but the emotion that she received was unexpected. Maybe I should have been a little more upset than I was, but sometimes naivety can work in your favor. My thoughts: I was actually a little bit excited at the diagnosis. I have basically self-diagnosed myself as having a benign mass in my abdomen and I was excited that I was at least partially correct. So, now it is confirmed, I have a mass in my abdomen that is causing all of my pain. Removing this mass should be a simple procedure, as the abdomen is easy to get at for surgery. Once the mass is removed, I will be pain free. And because this tumor is actually new growth that is being removed, it seems clear that all of my other organs are in great shape, if only a little crowded.
Dr. Sharma seemed relieved at my reaction, but did not seem nearly as confident that the mass was benign. The radiology report included a section at the bottom entitled “Impression:” which said that the mass appeared to be lymphoma or a long-standing sarcoma. It was recommended that a tissue biopsy confirm the “impression.”
Dr. Sharma referred me to a General Surgeon, Dr. Kramer, who was able to work me into his schedule the following morning for consultation. At this appointment, we discussed the radiology report and he looked at the images from the CT scan that I had brought with me. He explained that I basically had four options in proceeding with my diagnosis. 1). We could do a CT guided needle biopsy. 2). We could do a surgical tissue biopsy 3). We could remove the entire mass completely or 4). Start chemotherapy and radiation to shrink this “extremely large” abdominal mass. The benefits to numbers 1 and 2 are that you get a confirmed diagnosis, with minimal invasion. The downfall of numbers 1 and 2 are that if cancer is confirmed, that a “trail” will have been left to (although extremely rare) spread cancer cells to other parts of my body. Number 3, while obviously being the most invasive would be the best option if the cancer was confirmed to be contained within the mass. And number 4, would simply be a long process (maybe months) that could not be justified without a diagnosis of cancer.
Dr Kramer, being a general surgeon and not a cancer specialist, decided that he needed the help of his radiology team and oncology team at Emory Eastside to assist him in making this decision. Dr. Kramer then met privately with the “team” and called me later in the morning.
The decision turned out to be number 1, a CT guided needle biopsy. I was scheduled for the biopsy procedure on Monday, May 19 at Emory Eastside day surgery. It was a 45 minute procedure that turned out to be quite painless. A needle was placed into my abdomen, and then with the needle still in my abdomen, a CT scan performed, showing the exact location of the needle. Once the needle was confirmed to be in the center of the mass, a core tissue sample was drawn into the needle. One common flaw with this needle biopsy is that the pathologist frequently receives a sample that is too small to conduct extensive pathology. To make sure this was not the case the pathologist actually reviewed the sample while I was on the table to confirm that the quantity was sufficient. I was told after the biopsy to expect results in 2 or 3 days.
After a few anxious nights, I received a telephone call from Dr. Kramer at noon on Friday, May 23. The conversation was short, but direct. The full pathology report was not yet complete, but they had confirmed that the tumor was malignant. He had spoken with the pathologist and confirmed malignancy, but the exact type, and staging were not yet complete. So that was it. In a simple telephone call, I have cancer.
Dr. Kramer, again, being a general surgeon, implied during our short conversation that I was being released from his care and that I should handle all further concerns with Dr. Allan Freedman at Suburban Hematology – Oncology. I was given a name and telephone number, and very little support. I was really expecting to receive devastating news such as this in the doctor’s office, but then again, it was noon on the Friday before Memorial Day weekend.
After contacting Dr. Freedman’s office, I was told that the first available appointment with Dr. Freedman was June 12. If I would like to see an associate of Dr. Freedman, Dr. Singh was available on June 3, and Dr. Sarma (not to be confused with my family doctor, Dr. Sharma) was available June 9. The receptionist actually told me that these appointment dates were unacceptable but that there was nothing that she could do to help. She recommended that I call Dr. Kramer and have him speak directly to Dr. Freedman to request an earlier appointment. Multiple attempts to reach Dr. Kramer came up empty handed, and I actually have still not received his return call today, 6 days later. Thank you, Dr. Kramer. My only option was to speak with Dr. Sharma about the appointment scheduling. As it turned out, she actually knew the doctors and gladly called and scheduled the appointment on my behalf. My appointment was scheduled with Dr. Sarma on Tuesday, May 27.
Meeting with Dr. Sarma on May 27 yielded little information. He had contacted the pathology department at Emory University regarding the pathology report that was scheduled for completion 6 days prior. The report was still not complete, but they had a few more comments to add to Dr. Kramer’s assessment on Friday, May 23. The most significant of these comments was that my cancer had been diagnosed as an undetermined variety of soft tissue sarcoma. Dr. Sarma told us that there are around 5,000 cases of sarcoma diagnosed each year in the U.S. Further research has told us that there are over 50 types of sarcomas. These factors combined, according to Dr. Sarma, make this type of cancer rare. He said that if you take that number of annual sarcomas, divided by the number of oncologists in the U.S., that most oncologists have never seen any type of sarcoma. He also noted that sarcomas in general are notorious for spreading to other organs very easily.
Dr. Sarma also noted that there was a 1 centimeter spot on my liver which has aroused suspicion. He said that he wanted some tests run over the next couple of weeks to investigate. A PET scan was scheduled for Friday, May 30, and two MRI’s were scheduled for Monday, June 2. The PET scan would show any cancer that has spread into my bones as well as other major organs. The MRI’s will consist of two different scans. One scan will be of the brain to check for brain tumors, the other scan is of the pelvis. The pelvis scan will address a relatively new symptom that has presented itself in the past two weeks. I am experienced severe pain in my lower back and left leg that feels like a pinched nerve. Dr. Sarma thinks that my tumor has actually become entangled in my Sciatic nerve, causing the symptoms of a pinched nerve. The pelvic MRI will determine the extent of this problem.
A follow up appointment was scheduled to review the results of this test on Monday, June 9. Now hopefully you just caught the same ironic clue that I caught. When I was trying to make an appointment with Dr. Sarma on Friday, his next available appointment was Monday, June 9.
I spoke with Dr. Sharma today, Thursday, May 29 and was told that the pathology report was still not completed, 1 week and 3 days after the biopsy was conducted. The original time estimate for the release of the pathology report was 2 or 3 days. I expressed my concern with Dr. Sharma that I was worried about the delays in the diagnosis. To me, it appears that they do not have an answer. They cannot determine the type of sarcoma. Dr. Sharma agreed.
Basically, I am losing hope in the health care system at Emory. I feel as though I am not getting the attention that my case deserves. The doctors lack any sense of urgency.
Internet research has turned up a few possible solutions, the most promising of which is MD Anderson Cancer Center, University of Texas, Houston. Our research has lead us to this facility, ranked #1 in the nation for cancer treatment. MD Anderson has a department that is dedicated to the treatment of sarcoma cancers. We have since discussed this facility with Dr. Sharma, family, friends, and those who have personally been to the center. Everyone agrees that seeking treatment at this location gives me the best possible chance to beat this cancer.
If you have made it this far into the blog, there is no doubt that you are sincere in your efforts to help Marissa and me get through this tough time. I am sorry for such a long and wordy background, but hopefully now I can begin to make brief posts of the day’s news without extensive explanation. The beautiful thing about this blog is that if you lose interest, you do not have to continue reading.
Please check back frequently for updates, which should be daily now. Thanks for reading.