I am sorry for the delayed post. I have a lot to cover since my last post on Saturday, May 31. Saturday evening was quite uneventful. After Marissa and my dad arrived, we managed to squeeze in a little family dinner before going to bed. I guess that 13.5 hours on the road is a little tiresome. I am just fortunate that I did not have drive. I do not believe that I would have made the trip.
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.