I am constantly amazed at how stress has messed with my mind and my memory. I went back to my journals to make sure to get everything in the right order and discovered that I have remembered quite a few things not only out of order, but completely WRONG!! For instance, the stuff with Jesse and the AS diagnosis happened much closer to Ken’s death than I remembered. And we didn’t get to go to TEAM Evaluation as quickly as I had remembered...it was quicker than usual, but we did have to wait a couple of weeks. I was thinking the lady had told me we could come in a couple of days, but truthfully, it was a couple of weeks. It was still sooner than we could have hoped for or expected.
I also didn’t remember that in the midst of all of the scopes, scans and tests for Ken’s new symptoms, he developed shingles. Don’t know how I could have forgotten that. It started with Ken complaining of pain in his back (not the same pain I’ve been talking about) that sort of wrapped around to the front and ached into his groin muscles. With everything else that was going on, I figured it was all part of the same problem. Well, a day or so later, when Ken lifted up his shirt for me to hook him up to “Bill”, I noticed an angry-looking red rash on his back. It had hard blistery-looking things on it and was warm to the touch. Ken didn’t even know it was there until I asked him what it was. I called Jan and she said it sounded like it could be shingles and that we should probably call Dr. Schlabach.
When Ken woke up the next morning, the rash was MUCH worse. It didn’t cover his whole back, but sort of made a huge red swath starting at his mid-back and wrapping around his side and onto his abdomen and down toward his groin. It looked like someone had thrown boiling water on him. He had also started running a temperature. I called Dr. Schlabach’s office. Dr. S. was out of the office for a couple of days, so I spoke with his associate (can’t remember his name) who said he thought from my description that it was probably shingles. Told us to come in and let him have a look at it to be sure. We trotted off toward Erlanger Hospital...AGAIN! The doctor took one look and said, “Yep, it’s shingles alright.” I told him I thought shingles was an “old-person disease”. He said that usually it was, but people with compromised immune systems were prone to get it too. He gave us a prescription for Acyclovir, an antiviral drug. He said Ken would have to take it for two weeks, five times a day. “Why so much medicine and why so long?” I asked. He said that if Ken had been healthy when he got shingles, he would only have to take the Acyclovir for three days. But since Ken had no spleen and his immune system was so depressed, he would need to take it for two solid weeks. Oh boy! One more thing!
Chemotherapy x 3
Early the next morning, Ken and I found ourselves, once again, facing Dr. Schlabach across an all-too-familiar exam room. Dr. S. was wearing pretty much the same look on his face as he had been the first time we ever saw him. And sadly, he was telling us pretty much the same thing he had told us then–nothing much they could do. He did add one thing...that metastatic cancer is MUCH harder to fight than original cancer. I already knew that from my previous research, but hearing the Dr. say it out loud was hurtful and heartbreaking.
“So what do we do now?” was the question that was asked, though I honestly cannot remember if it came from me or Ken. Dr. S. said, “It is really up to you. We can try another round of chemotherapy and see how the cancer responds, but in all honesty, I wouldn’t look for it to help very much.” I looked at Ken and asked him what he wanted to do. He said, “I guess it wouldn’t hurt to try some more chemo”. I knew that is what he would say, because even though he hated the way chemo made him feel, he was NOT about to quit. I nodded my head at him, squeezed his hand, and asked Dr. S. how soon they could schedule the chemotherapy. He said he would write the order while we were there and go ahead and have his assistant schedule the first treatment as soon as possible.
We drove home that day in silence. Neither of us knew what to say. I think we were just so weary – mind, body and soul – the effort it took to talk was just too great. I’m pretty sure we didn’t say anything about it to Jesse and Benjamin that day. In all honesty, I’m not sure we spoke to anyone about these new developments for at least a couple or three days. Probably not until the new chemotherapy started.
The “new” chemo was actually one of the oldest chemotherapy drugs on the market. It had been developed so long ago that it didn’t even have a name – just a number. It had been used for many years on just about every kind of cancer there was. In my mind, I’m thinking...”They have used all of the strongest chemo drugs available to treat Ken’s cancer. I guess now, they are going to just try what’s left.” This protocol called for six to eight treatments. The treatments only lasted about 30 minutes each. Dr. S. said we would do half the treatments, redo the bone scan, and then we could decide whether or not to continue. So...we made preparations for Ken’s THIRD round of chemotherapy. We were still fighting that monster with poison.
“So what do we do now?” was the question that was asked, though I honestly cannot remember if it came from me or Ken. Dr. S. said, “It is really up to you. We can try another round of chemotherapy and see how the cancer responds, but in all honesty, I wouldn’t look for it to help very much.” I looked at Ken and asked him what he wanted to do. He said, “I guess it wouldn’t hurt to try some more chemo”. I knew that is what he would say, because even though he hated the way chemo made him feel, he was NOT about to quit. I nodded my head at him, squeezed his hand, and asked Dr. S. how soon they could schedule the chemotherapy. He said he would write the order while we were there and go ahead and have his assistant schedule the first treatment as soon as possible.
We drove home that day in silence. Neither of us knew what to say. I think we were just so weary – mind, body and soul – the effort it took to talk was just too great. I’m pretty sure we didn’t say anything about it to Jesse and Benjamin that day. In all honesty, I’m not sure we spoke to anyone about these new developments for at least a couple or three days. Probably not until the new chemotherapy started.
The “new” chemo was actually one of the oldest chemotherapy drugs on the market. It had been developed so long ago that it didn’t even have a name – just a number. It had been used for many years on just about every kind of cancer there was. In my mind, I’m thinking...”They have used all of the strongest chemo drugs available to treat Ken’s cancer. I guess now, they are going to just try what’s left.” This protocol called for six to eight treatments. The treatments only lasted about 30 minutes each. Dr. S. said we would do half the treatments, redo the bone scan, and then we could decide whether or not to continue. So...we made preparations for Ken’s THIRD round of chemotherapy. We were still fighting that monster with poison.
Bone Scan -- Broken Heart
Ken had never had a bone scan before, so we weren’t really sure what to expect. We had to go back to the imaging center, but to a different section this time. Instead of pushing the white glop through Ken’s feeding tube again, they were going to inject some kind of dye into his veins. They took us back into a little room and had Ken roll up his sleeve so they could get to his arm. The technician asked some questions while the nurse was injecting the dye. After about the third or so question, she asked, “He has ‘mets’?” (That’s hospital shorthand for cancer that has metastasized or spread to other places in the body.) The question sort of caught me off guard and I stammered, “I guess that’s what we’re here to find out.” Hearing someone say it out loud for the first time sort of squeezed all the air out of my lungs.
After they had injected the dye, they told us to go get some lunch and come back in a couple of hours. I think we ended up at Long John Silver’s or someplace like that. Neither one of us was really hungry and we were both too scared to talk about what this test could mean, so we just sat across the table from each other and held hands. We finally went back to Erlanger and sort of wandered around until it was time to go back for the scan. They took Ken back and sent me out into the waiting room. I’ve often thought that they should change the name from “waiting room” to “worrying room” because that’s mostly what I did–worry. I’m sure it was the same for most of the other “waiters”.
When the scan was over, they told us that it would take two to three days for the results to be read and sent to Dr. Schlabach. We went home and worried some more. On the second day, I waited until about 3:00 p.m. and called to see if Dr. S. had received the scan results yet. They said, “No, not yet. We’ll call you when they come and the Dr. has had a chance to go over them.” I waited in agony until well after 6:00 o’clock before giving up for the day. I knew that Dr. S. usually made his calls after 5:00, but if he hadn’t called by 6:00, he probably didn’t know anything.
The following morning (day three), I paced the floors until about 10:00 o’clock before I called. Told them who I was and what I wanted and she said she didn’t see anything at the front desk, but she would run back to Dr. Schlabach’s office and see if the results were on his desk. The ladies at the cancer center were very good about checking for people and not just letting them “hang”. And if the test results were good, even though they weren’t supposed to tell until the Dr. told them it was okay to call, they would go ahead and “whisper” that the news was good. She came back on the line and said, “Ummmm, yes, the results are here, but I don’t think Dr. Schlabach has had a chance to look at them yet.” I was sort of surprised by her response, because they’d “whispered” results to me before when Dr. S. hadn’t looked at them. “We’ll call you back this afternoon,” she said in that overly-cheerful manner that people have when they don’t want to tell you bad news. “Okay”, I said, “I’ll be by the phone waiting for your call”.
I forced myself to wait until 4:00 o’clock before I called again. This time she said, “Dr. Schlabach is looking at the scan results right now. Give us about 15 minutes and we’ll give you a call!” (still overly-cheerful, I noticed). When the phone rang a little bit later, I took three deep breaths and tried to control my rapidly pounding heartbeat. “Hello?”, I said, with a tremble in my voice. “Mrs. Lunsford? It’s Dr. Schlabach.” I felt my already-broken heart beginning to shatter into even tinier little pieces. I did NOT want it to be the Dr. The Dr. himself never EVER called unless it was bad news!! I think I may have even told him that I didn’t want to talk to him. Dr. S. said, “Well I wanted to call you myself because we have a whole new situation going on”. “What kind of situation?” I whispered. “The scan shows that Ken has cancer in his bones,” he said in that “doctor-ish” tone of voice. “Which bones?” I asked (as if it really even made a difference at that point). “Unfortunately”, he replied, “the scan shows cancer in bones all over Ken’s body. It is in his skull, his ribs, his legs, his pelvis and his spine”. After what seemed like an eternity, I was finally able to ask Dr. S. what we needed to do now. He told me to bring Ken to the office the next morning and we would discuss our “options”.
I hung up the phone and sat there with it in my hand for the longest time. Ken was in the back of the house playing video games or watching TV with Jesse and Benjamin. I asked him to come into the kitchen for a minute. When he came in, I was facing the sink, not able to look at him yet. “Darlin’, what is it?” he said as he turned me around. “It’s back! The cancer is back!” I whispered through tears. He just looked at me with those sweet blue eyes and nodded his head.
After they had injected the dye, they told us to go get some lunch and come back in a couple of hours. I think we ended up at Long John Silver’s or someplace like that. Neither one of us was really hungry and we were both too scared to talk about what this test could mean, so we just sat across the table from each other and held hands. We finally went back to Erlanger and sort of wandered around until it was time to go back for the scan. They took Ken back and sent me out into the waiting room. I’ve often thought that they should change the name from “waiting room” to “worrying room” because that’s mostly what I did–worry. I’m sure it was the same for most of the other “waiters”.
When the scan was over, they told us that it would take two to three days for the results to be read and sent to Dr. Schlabach. We went home and worried some more. On the second day, I waited until about 3:00 p.m. and called to see if Dr. S. had received the scan results yet. They said, “No, not yet. We’ll call you when they come and the Dr. has had a chance to go over them.” I waited in agony until well after 6:00 o’clock before giving up for the day. I knew that Dr. S. usually made his calls after 5:00, but if he hadn’t called by 6:00, he probably didn’t know anything.
The following morning (day three), I paced the floors until about 10:00 o’clock before I called. Told them who I was and what I wanted and she said she didn’t see anything at the front desk, but she would run back to Dr. Schlabach’s office and see if the results were on his desk. The ladies at the cancer center were very good about checking for people and not just letting them “hang”. And if the test results were good, even though they weren’t supposed to tell until the Dr. told them it was okay to call, they would go ahead and “whisper” that the news was good. She came back on the line and said, “Ummmm, yes, the results are here, but I don’t think Dr. Schlabach has had a chance to look at them yet.” I was sort of surprised by her response, because they’d “whispered” results to me before when Dr. S. hadn’t looked at them. “We’ll call you back this afternoon,” she said in that overly-cheerful manner that people have when they don’t want to tell you bad news. “Okay”, I said, “I’ll be by the phone waiting for your call”.
I forced myself to wait until 4:00 o’clock before I called again. This time she said, “Dr. Schlabach is looking at the scan results right now. Give us about 15 minutes and we’ll give you a call!” (still overly-cheerful, I noticed). When the phone rang a little bit later, I took three deep breaths and tried to control my rapidly pounding heartbeat. “Hello?”, I said, with a tremble in my voice. “Mrs. Lunsford? It’s Dr. Schlabach.” I felt my already-broken heart beginning to shatter into even tinier little pieces. I did NOT want it to be the Dr. The Dr. himself never EVER called unless it was bad news!! I think I may have even told him that I didn’t want to talk to him. Dr. S. said, “Well I wanted to call you myself because we have a whole new situation going on”. “What kind of situation?” I whispered. “The scan shows that Ken has cancer in his bones,” he said in that “doctor-ish” tone of voice. “Which bones?” I asked (as if it really even made a difference at that point). “Unfortunately”, he replied, “the scan shows cancer in bones all over Ken’s body. It is in his skull, his ribs, his legs, his pelvis and his spine”. After what seemed like an eternity, I was finally able to ask Dr. S. what we needed to do now. He told me to bring Ken to the office the next morning and we would discuss our “options”.
I hung up the phone and sat there with it in my hand for the longest time. Ken was in the back of the house playing video games or watching TV with Jesse and Benjamin. I asked him to come into the kitchen for a minute. When he came in, I was facing the sink, not able to look at him yet. “Darlin’, what is it?” he said as he turned me around. “It’s back! The cancer is back!” I whispered through tears. He just looked at me with those sweet blue eyes and nodded his head.
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