Today, for the third time in a week, we caught a break with a biopsy. Mike's bone-marrow biopsy from Tuesday afternoon was clear of cancer.
The past couple days, and the past 24 hours in particular, have been torture. Slow death. We have waited out countless biopsies in recent years, but they never get any easier. And with so much riding on the current situation, this biopsy was absolutely critical. I knew when they decided to perform the biopsy on Tuesday that they were looking for only one thing -- leukemia. By all accounts, Mike's blood counts should have shown signs of recovery by this point since the current chemo ended on Sept. 4. Mike's primary oncologist didn't seem to be too worried about the sluggish recovery time, but the current attending oncologist on the floor, Dr. A, seemed very bothered by the prolonged nadir. I tried not to let my mind go there, but I knew that if the marrow had cancerous cells, and it was these cells that were preventing normal healthy cells from rejuvenating, Mike would be in serious trouble.
Last night at this time I knew we'd most likely have the results today, and my uneasiness was setting in. It didn't help matters that Mike had another fever overnight around 4AM. By around 9AM when the attending came for his morning rounds, there was no news. I breathed a little sigh of relief, but knew we were possibly just avoiding the inevitable. As the morning and early afternoon wore on, I just prayed and waited. Finally a little after 3PM, I saw the attending outside the door, talking with Mike's nurse. My heart sank. I knew there was only one reason he was paying us a second visit in one day. I tried to read his expressions, and I did notice he seemed to be smiling as he and the nurse talked -- of course, that didn't mean necessarily that they were talking about Mike.
Dr. A came in and Mike stirred from his nap. I just stared waiting for the verdict. I should note that Dr. A is by all accounts a very intelligent doctor, but he doesn't always seem at ease with patients. It's almost as if he has a social awkwardness about him, and I find him impossible to read or relate to. He proceeded to say, "So, we have the results of the bone-marrow biopsy. The marrow is 'empty.' We didn't find any leukemia cells." While he spoke straight-faced, I looked behind him at Mike's nurse who was grinning from ear to ear. Dr. A continued that even in the flow cytometry (where they measure the sample at the microscopic level), they didn't find any leukemia. It was music to my ears, and some tears began to fall from my eyes. Dr. A almost looked as if he didn't know how to react to that, and I could tell I wasn't going to draw much of a response from him, but I didn't care -- I heard what I'd been longing to hear for the past 48 hours.
Dr. A explained that while they didn't find leukemic cells, they didn't find any healthy cells either. So, the marrow hasn't begun producing anything yet -- hence the low blood counts and the almost daily need for transfusions. He said it might be another week or more before we see recovery begin. I know Mike wasn't happy about that part of it, but I know that extra time will be easier to handle now that we know the marrow is healthy and we're not left wondering what's going on inside the body. Dr. A also went on to say that if they had found leukemic cells in the marrow, it would not have been good (duh). He said if that were the case there wouldn't be much they could do, and that Mike probably wouldn't be in any condition to handle treatment at this time anyway. I really could have done without this "what if" scenario. We didn't need that image put into our heads -- we should just be rejoicing at what is!
As for the fevers, Mike is well covered on a variety of anti-biotics and anti-fungal medicines. Getting his immune system to repair and help out is key, and we hope that will happen in the coming week. As for right now, I think I might actually have half a chance at getting some sleep tonight.
Sweet dreams....
Thursday, September 29, 2011
Monday, September 26, 2011
"Deep Waters"
If there is anyone who started reading this site as an infertility blog and continues to follow it, I appreciate their continued interest and concern for Mike. I never imagined this would become more of a play-by-play of Mike's health struggles, but evidently it has.
Once again, I write this from a hospital room on day 28 of Mike's latest hospitalization. I can't even believe I'm writing this. Since his admission, the summer has ended and the foliage is beginning to change, Labor Day weekend came and went, kids went back to school, and Mike even turned 40 -- complete with a birthday spinal tap on day two of chemo. If there's a purpose in all this, I must be legally blind because I simply fail to see it.
A few days after my last entry, Mike's bloodwork seemed to be getting more and more curious. His liver function tests were rising, his platelets and hematocrit were still low, blasts (immature cells) were showing in his blood and his white cell count was rising above normal levels. His LDH, which can measure tissue breakdown, was rapidly increasing. By Friday, Aug. 26, he even started getting some bone pain in the hips and back. The following day we were supposed to celebrate his 40th birthday at our house with his family and some friends, but he woke up in such pain that we told his friends not to come. He spent the entire day trying to play down the pain to his family, and started taking Dilaudid along with higher levels of prednisone. After his family left that evening, the pain got so excruciating that he was walking around the house nearly gasping for breath. He called the doctor on call and got permission to increase his pain meds. By Sunday, Hurricane Irene was upon us and to top things off we lost power. Mike made it to Monday's checkup, where his labs were even worse than they were the previous week. The nurse practitioner, C.P., who examined him (she was filling in for Mike's primary oncologist, Dr. B, while she was on vacation) cautioned us that when we returned the following day for his regularly scheduled appointment with Dr. B that we should bring a bag -- he would likely be admitted to the hospital. Later that afternoon, I went to the ladies' room while Mike was receiving an infusion and I bumped into C.P. as I was leaving. She looked at me with a consoling look and asked how I was doing. I think I said I was fine and probably had somewhat of a calm look on my face because she then replied to me, "You know we're treading in deep waters here, right?"
The following day we returned to the hospital and finally met with Dr. B. Mike was still in a ton of pain, but was managing it with pain meds enough that he could function. By this time, Mike's white cell count -- which should be anywhere from about 4.5 to 10 -- was over 50. He had a ton of blasts in his blood, his LDH (which should be around 200) was over 8,000. His leukemia had never presented in such an aggressive and consuming manner. Dr. B came in to speak to us and proceeded to say, "I'm going to say some things you're probably not going to want to hear...." She told us what a tight spot we were in, and gave us several options. She said Mike could go back to the out-patient maintenance chemo he's been doing (but was temporarily off of because of its effect on his blood counts and liver), try a new chemo called chlofarabine (mainly used in children and is out of St. Jude's Research Hospital), or he could decide he's had enough treatment, do nothing and go back home where he'd be "made comfortable." If he chose the last option, she said, things would progress rapidly and he might only have a couple weeks left. It was surreal -- after eight-and-a-half years of fighting this pestilence, for the first time Mike was actually given a number on how much time he might have left to live. It was a blow we weren't expecting. Dr. B and Mike's nurse, Karen, left the room so we could discuss things. Mike, in addition to being in physical pain, now welled up and showed the emotional terror he was feeling. I felt so helpless. I knew I had to be strong and encouraging for him no matter what. I tried to comfort him and reassure him that he would be OK, but my words weren't enough. I never saw him so backed up emotionally. Soon, Dr. B and Karen came back into the room and we told them Mike still had fight left in him -- he would try the chlofarabine. After it was just us and Karen in the room, Mike started to break down some more. I could see the pain in Karen's face as well. Karen has been his nurse since the beginning, and she's become a friend to us as well as being a phenomenal nurse.
We had some time before Mike's room was available, so we went out to the courtyard and sat outside for a short while. We didn't say much to each other. What could we say? We knew we were playing what might be our last medical card, and it terrified us.
A couple hours later Mike was officially admitted. His emotions were still shot, while I tried to remain positive and supportive. The following day, the first infusion of the five-day course of treatment began. By the next day, his blood counts were already dropping. The white cell count that was nearly 60 was down to five. A day later (Mike's 40th birthday), Mike was borderline neutropenic (when your neutrophils -- infection-fighting cells -- are so low you are susceptible to fevers and infections). It looked like the chlofarabine was working, even though they were giving him a bit of a reduced dose in order to protect his liver. The bone pain began to subside enough that he didn't need the pain meds anymore. The nurses even threw him a little surprise birthday party down in the lounge on the floor. Once the chemo cycle ended that Sunday, the waiting began. Antibiotics were started to protect him from the infections and fevers that usually come with having no immune system. By week two we were even part of the the official move of the oncology unit to the brand-new building next door. After that, we settled in here and continued to wait for the blood-count recovery.
In the weeks since, Mike's had fevers along with positive blood cultures. They found six different bacteria in his system and periodically shuffled around his antibiotics to give him the best coverage. He had chest x-rays and CT scans and several other tests to try to find a specific source of the infections. Finally, they even removed the IV port in his chest (which he's had for almost two years) since they thought it might be holding bacteria in his system, and they replaced it with a temporary picc line in his arm. However, the fevers still persisted even after the port removal. Mike seemed to have a turning point nearly two weeks ago when he got through the night without spiking a fever. We seemed to have turned the corner, but the following night the fevers were back. Usually the fevers brought mild chills and sometimes terrible shakes, and Mike would keep asking for blanket after blanket. A few times I even had to rub his arms and back over the blankets to create heat until the fever started to break. I remember freaking out when one of his temps hit 103.5, wondering why they couldn't get these infections under control.
Then about a week and a half ago, Mike happened to mention that he would get occasional pain or discomfort in his left sinus. Since the doctors were still on the hunt for a source of the fevers (and since the left sinus was where a tumor had grown in January, requiring radiation treatment), they immediately began looking into it. They did a head CT scan, an MRI, and the ear, nose and throat (ENT) doctors began coming to the room to examine him. They would use a long scope to go up into the left nostril and look for inflammation or any other signs of damage or infection. They also wanted to see what he could feel during the examination, as loss of sensation could indicate an invasive fungal infection. The eye doctors and infectious disease (ID) docs were also in and out examining him. The poor thing was poked and prodded more than anyone should be expected to endure. As usual, he did it amicably.
The day after ENT first scoped the left sinus, Mike's left eye began to look a little puffy and the skin around it began to appear pink. Over the next few days ENT continued to come back and examine him, and each day the eye became more puffy and bruise-like. This began to concern the oncology team, as well as the ENT and ID docs. They were beginning to suspect either invasive fungus or tumor recurrence. I began to panic. Meanwhile, I also mentioned to anyone who would listen that I noticed the change to Mike's eye only after ENT began to poke around up in the maxillary sinus. The ENT docs assured me that scoping wouldn't cause swelling or bruising around the eye. In my mind though, I could see a clear cause and effect, and I felt especially sure the exams had something to do with this because of Mike's extremely low platelets. Still, I was told it was "just a coincidence." Due to the low platelets, however, Mike's oncology team was reluctant to give ENT the go-ahead to biopsy the sinus area. So, we just watched and waited through most of last week, and Mike became increasingly anxious and upset each time a doctor or nurse would ask him about the eye.
By this time, Mike's fevers continued, and he routinely needed some combination of Ativan, Dilaudid, Zofran and Demerol to deal with nausea, shaking chills and anxiety. Last Thursday morning, after dealing with some fevers through the night, he started having shaking chills and I had to begin piling blankets on him. At that point, his temperature was only in the high 99s, but as we have learned, the chills usually precede a fever spike. After the nurse took his vital signs, she gave him some meds to calm the chills. He was shaking so uncontrollably and was so miserable though that he asked for two milligrams of Dilaudid, where he was usually only getting one. He also had hot packs under the blankets in a futile attempt to warm him up. I tried to rub him to keep him warm and soon he was knocked out from the meds. I sat over on the couch watching him and praying as much as I could. I didn't like the way he looked or how this fever and chills episode seemed worse than usual. I sat with my Bible and went back and forth between Psalms 91 and 103, just praying for Mike's protection and healing. I kept looking over at him though, and didn't like the deliberate and strange way he was breathing. I sat on his bed and would wipe away the beads of sweat on his forehead. I softly ask him how he was doing, but wouldn't even get a response out of him. The Dilaudid had him so knocked out that I don't think he even heard me. Then, I reached over and touched his arm. I was startled. He felt hotter than I ever felt him to be. I immediately got up and poked my head out of his room. I didn't see his nurse at the nursing station, so I got the attention of one of the other nurses who was coming out of the room next door. I told her that Mike felt really hot and asked if she could come check on him. She came in and took his temperature. It was 105 degrees. From that moment, everything changed. The nurse started taking his other vital signs while another nurse joined her in the room. Blood pressure was 80ish/50ish. Heart rate was 175. Mike was going into septic shock. He was still semi out of it from all the drugs, so he wasn't feeling the panic I was feeling, but I knew it was bad. Within minutes, other nurses as well as doctors on the floor started entering the room. It wasn't exactly a "code blue" situation, but it sure felt like it. There was a collective calm urgency among the staff as they talked and worked. At times it seemed as if there were close to a dozen staff members in and around the room, with nurses and nurse managers standing by outside the door. His attending oncologist was even paged. They started several different bags of fluids going into him at a rapid rate. They put ice packs on him and a cold cloth on his head. They put a nasal cannula on him to administer oxygen. The t-shirt he was wearing was 100% soaked, as if he had worn it in the pool. I just stood there in my pajamas, trying to stay out of everyone's way, and trying to stay calm. I tried to de-code all the "doctor-speak" that was going on, and a couple of the nurses would take turns standing next to me and explaining what was being said and done as they worked. They put him on a monitor so they could keep a constant eye on his vitals, and they began taking his blood pressure and temperature every five minutes or so. They immediately started him on a very strong IV antibiotic to try to get whatever infection was in him under control. They got another IV ready that would be used to raise his blood pressure. The staff then started talking and making plans to move him to the intensive care unit where they could give him medicines that couldn't be administered on the oncology floor, and to get him stabilized. In all the chaos, you tend to lose track of time, but I'd say within a half hour to 45 minutes of this all starting, he started to respond to all the efforts. Soon the temperature readings began to drop -- 104s, 103s, 102s.... The heart rate began to drop -- 160s, 150s, 140s.... The blood pressure slowly began to rise. He was beginning to stabilize. I could start to see the relief in the faces of the nurses and gradually the number of people in the room began to dwindle, until just one or two of the doctors were keeping an eye on things along with several nurses. I could breathe again. I stepped out and went down to the lounge where I called my in-laws and, in the calmest way possible, told them what was going on. They immediately left the house to make the 26-mile drive to the hospital. Shortly thereafter, Mike's youngest sister came walking hurriedly down the hall as she had gotten the news from her mom. Visibly shaken, she welled up with tears as she saw me and we just hugged outside Mike's room. By that time, he was in a lot better shape. I told her his temperature was now normal, and his vitals were much better than just an hour before. It was at that point that the staff decided he was well enough to remain on the floor and would not need to be transferred to the ICU.
In the following hours of that afternoon, I sat with my Mike's parents and sister in the room and were just happy to be there with him, even as groggy as he was. My in-laws went out and got me some lunch, and I was able to step away briefly to get a shower. Mike was in and out of naps and joined in some conversations when he was able, but that was fine -- he was in a much better place than he was just several hours earlier and that was more than enough for us. One of Mike's other sisters, Mary, stopped by around dinnertime and she kept me company for a few more hours after the others headed back home. Now, one would think the morning's episode was enough drama for the day, but there was more to come. By late evening, the ENT doctor was back. She came to once again examine Mike and scope the sinus, but also to reiterate her growing concern that the unrelenting fevers and worsening of the eye could speak to a fungal infection. If this was fungus, they had to move quickly. For this reason, she strongly recommended doing a bedside biopsy of the sinus. At this point, Mike was so wiped out from the day's events that he asked her why this couldn't wait until morning, where it could be done in the operating room under a light sedation. After all, various docs had been poring over his head CT/MRI results for days -- what was the rush? She was pretty firm in her response -- if this was an invasive fungal infection, it could spread very rapidly and in no time at all this could become an extremely serious situation. Her colleague also went into details about what they would have to do in the case of fungus -- very serious talks with the doctors about surgery to remove the affected tissue, how aggressive they would want to be, etc. It was not a pretty picture, and we knew this was true because we were warned of the same possible scenario back in January when he had the first scare with the sinus (which turned out to be tumor). All Mike could focus on was how painful the sinus biopsy was in January. For reasons I will never know, they didn't numb him nearly enough and he felt every bit of that first biopsy. These docs assured him that he would be numbed locally, and would be given systemic pain killers as well. Either way, it was made clear -- the doctors needed a definitive answer on what was going on in the sinus/eye, whether it was fungus, tumor or a combination of the two. Mike agreed to the biopsy.
Mary stayed with me until the biopsy was about to begin, then she left so as not to get in the way. I gave a quick call to my friend Rene, who prayed for Mike and talked me through my anxiety. The two ENT docs began to pre-medicate Mike around 10PM and soon after began the biopsy while he was also given a bag of platelets. I was a wreck. I didn't think I could be more frightened than I was that morning, but I was beyond scared. I sat on the couch as they worked, not being able to even watch them. I sat there with my Bible, re-reading the same psalms I read earlier in the day. I just kept repeating them over and over, and rocked myself back and forth, as if in a trance. As much as I tried, I couldn't get my mind off what could be headed Mike's way if he had a fungal infection. Would they have to get him in for surgery the next morning? Would he need facial reconstruction? Would he lose an eye? It was all very possible. I was so uncomfortable in my own body that I wanted to jump out of it and run away. By 11PM, the biopsy was done and all went well. I texted Mike's family to let them know it was done. The ENT doctor sent off the sample, and said they should know within about 45 minutes or so if any fungus was seen in the specimen. She then left to go see another patient and I was all alone while Mike rested. It felt like the longest 45 minutes of my life. I was so consumed with fear that I didn't know what to do with myself. I tried everything I knew to do -- read my Bible, prayed, rebuked any negative thoughts or reports. I tried it all. I just kept asking God for a miracle, because that's exactly what we needed. A little while later, Mike's nurse, Annie, came back into the room to do a few things. While in the room, she was beeped that she had a call out at the nurse's station. Moments later, she came back in the room. Annie, in her mother-hennish way, smiled at me and said, "That was the ENT doctor. It's not fungus." I couldn't believe it and had to hear it again. I think I asked her twice, as I welled up with tears, "It's not fungus? It's definitely not fungus??" I just started to cry and asked her for a hug. The weight of the past few hours had been stripped from me. I could breathe again. We had gotten the first part of our miracle. I just went over to Mike and kept telling him how much I loved him. I again texted Mike's family with the news and they were elated. I knew we still had to wait out the rest of the biopsy to see if it was tumor, but at least we made it over our first big hurdle. I was soon able to settle in for the night (well past midnight by this point) and get some rest. The ENT doc returned an hour or two later to retrieve the rest of her tools, and she came into the room to tell me herself that they didn't see any fungus on the preliminary biopsy. I thanked her for making the call over to us as soon as she got the news and she said, "You're welcome. I would have wanted to know if it was me."
Over the next few days, Mike had some small fevers that came and went. He rested a lot and both the physical therapist and nurses tried to encourage him to get out of bed and walk a bit. Since his recent bronchoscopy did show some fungal markers, they wanted to keep the lungs active. The antibioics and antifungal medicines continue, as they keep him covered for a variety of bugs they've found in his system. Yesterday, Mike's doctor even told him he should go outside for a bit and enjoy the nice weather. We were surprised he would be allowed to do that, so it was a wonderful treat! His nurse wheeled him outside and for about 45 minutes we just sat and talked and enjoyed a change of scenery. I think it did him a world of good to rejoin the land of the living for a while. And earlier today, we received more good news -- the final pathology of the sinus biopsy showed no cancer either. Praise God.
Now we continue to wait for the fevers to fully subside. We wait for Mike's white cell and neutrophil counts to come up (they're still basically zero). We wait for things to turn around in our favor. We need rest -- mentally and physically. Most nights are not restful at all, between the nurses coming in to take vitals, or the resident bombing in the room at 7AM to do his exam. There was one night when Mike had a nosebleed for almost four hours (from 11PM to 3AM); another night when his port bled nearly every hour through the night (just before they decided to take it out). This hospitalization has been way longer and more mentally gruelling than we ever anticipated. I am afraid to leave Mike's side for any length of time in case he needs me. During the night I stir at the slightest noise as he usually needs me for an extra blanket or to call the nurse. The entire experience has been a series of one step forward and three steps back. We now wait to see if a bone-marrow biopsy can show why Mike's blood counts haven't yet recovered. We need serious prayers that it's not because of the leukemia.
Yes, we are treading in deep waters, but I am holding onto my belief that God will lead us to shore.
Once again, I write this from a hospital room on day 28 of Mike's latest hospitalization. I can't even believe I'm writing this. Since his admission, the summer has ended and the foliage is beginning to change, Labor Day weekend came and went, kids went back to school, and Mike even turned 40 -- complete with a birthday spinal tap on day two of chemo. If there's a purpose in all this, I must be legally blind because I simply fail to see it.
A few days after my last entry, Mike's bloodwork seemed to be getting more and more curious. His liver function tests were rising, his platelets and hematocrit were still low, blasts (immature cells) were showing in his blood and his white cell count was rising above normal levels. His LDH, which can measure tissue breakdown, was rapidly increasing. By Friday, Aug. 26, he even started getting some bone pain in the hips and back. The following day we were supposed to celebrate his 40th birthday at our house with his family and some friends, but he woke up in such pain that we told his friends not to come. He spent the entire day trying to play down the pain to his family, and started taking Dilaudid along with higher levels of prednisone. After his family left that evening, the pain got so excruciating that he was walking around the house nearly gasping for breath. He called the doctor on call and got permission to increase his pain meds. By Sunday, Hurricane Irene was upon us and to top things off we lost power. Mike made it to Monday's checkup, where his labs were even worse than they were the previous week. The nurse practitioner, C.P., who examined him (she was filling in for Mike's primary oncologist, Dr. B, while she was on vacation) cautioned us that when we returned the following day for his regularly scheduled appointment with Dr. B that we should bring a bag -- he would likely be admitted to the hospital. Later that afternoon, I went to the ladies' room while Mike was receiving an infusion and I bumped into C.P. as I was leaving. She looked at me with a consoling look and asked how I was doing. I think I said I was fine and probably had somewhat of a calm look on my face because she then replied to me, "You know we're treading in deep waters here, right?"
The following day we returned to the hospital and finally met with Dr. B. Mike was still in a ton of pain, but was managing it with pain meds enough that he could function. By this time, Mike's white cell count -- which should be anywhere from about 4.5 to 10 -- was over 50. He had a ton of blasts in his blood, his LDH (which should be around 200) was over 8,000. His leukemia had never presented in such an aggressive and consuming manner. Dr. B came in to speak to us and proceeded to say, "I'm going to say some things you're probably not going to want to hear...." She told us what a tight spot we were in, and gave us several options. She said Mike could go back to the out-patient maintenance chemo he's been doing (but was temporarily off of because of its effect on his blood counts and liver), try a new chemo called chlofarabine (mainly used in children and is out of St. Jude's Research Hospital), or he could decide he's had enough treatment, do nothing and go back home where he'd be "made comfortable." If he chose the last option, she said, things would progress rapidly and he might only have a couple weeks left. It was surreal -- after eight-and-a-half years of fighting this pestilence, for the first time Mike was actually given a number on how much time he might have left to live. It was a blow we weren't expecting. Dr. B and Mike's nurse, Karen, left the room so we could discuss things. Mike, in addition to being in physical pain, now welled up and showed the emotional terror he was feeling. I felt so helpless. I knew I had to be strong and encouraging for him no matter what. I tried to comfort him and reassure him that he would be OK, but my words weren't enough. I never saw him so backed up emotionally. Soon, Dr. B and Karen came back into the room and we told them Mike still had fight left in him -- he would try the chlofarabine. After it was just us and Karen in the room, Mike started to break down some more. I could see the pain in Karen's face as well. Karen has been his nurse since the beginning, and she's become a friend to us as well as being a phenomenal nurse.
We had some time before Mike's room was available, so we went out to the courtyard and sat outside for a short while. We didn't say much to each other. What could we say? We knew we were playing what might be our last medical card, and it terrified us.
A couple hours later Mike was officially admitted. His emotions were still shot, while I tried to remain positive and supportive. The following day, the first infusion of the five-day course of treatment began. By the next day, his blood counts were already dropping. The white cell count that was nearly 60 was down to five. A day later (Mike's 40th birthday), Mike was borderline neutropenic (when your neutrophils -- infection-fighting cells -- are so low you are susceptible to fevers and infections). It looked like the chlofarabine was working, even though they were giving him a bit of a reduced dose in order to protect his liver. The bone pain began to subside enough that he didn't need the pain meds anymore. The nurses even threw him a little surprise birthday party down in the lounge on the floor. Once the chemo cycle ended that Sunday, the waiting began. Antibiotics were started to protect him from the infections and fevers that usually come with having no immune system. By week two we were even part of the the official move of the oncology unit to the brand-new building next door. After that, we settled in here and continued to wait for the blood-count recovery.
In the weeks since, Mike's had fevers along with positive blood cultures. They found six different bacteria in his system and periodically shuffled around his antibiotics to give him the best coverage. He had chest x-rays and CT scans and several other tests to try to find a specific source of the infections. Finally, they even removed the IV port in his chest (which he's had for almost two years) since they thought it might be holding bacteria in his system, and they replaced it with a temporary picc line in his arm. However, the fevers still persisted even after the port removal. Mike seemed to have a turning point nearly two weeks ago when he got through the night without spiking a fever. We seemed to have turned the corner, but the following night the fevers were back. Usually the fevers brought mild chills and sometimes terrible shakes, and Mike would keep asking for blanket after blanket. A few times I even had to rub his arms and back over the blankets to create heat until the fever started to break. I remember freaking out when one of his temps hit 103.5, wondering why they couldn't get these infections under control.
Then about a week and a half ago, Mike happened to mention that he would get occasional pain or discomfort in his left sinus. Since the doctors were still on the hunt for a source of the fevers (and since the left sinus was where a tumor had grown in January, requiring radiation treatment), they immediately began looking into it. They did a head CT scan, an MRI, and the ear, nose and throat (ENT) doctors began coming to the room to examine him. They would use a long scope to go up into the left nostril and look for inflammation or any other signs of damage or infection. They also wanted to see what he could feel during the examination, as loss of sensation could indicate an invasive fungal infection. The eye doctors and infectious disease (ID) docs were also in and out examining him. The poor thing was poked and prodded more than anyone should be expected to endure. As usual, he did it amicably.
The day after ENT first scoped the left sinus, Mike's left eye began to look a little puffy and the skin around it began to appear pink. Over the next few days ENT continued to come back and examine him, and each day the eye became more puffy and bruise-like. This began to concern the oncology team, as well as the ENT and ID docs. They were beginning to suspect either invasive fungus or tumor recurrence. I began to panic. Meanwhile, I also mentioned to anyone who would listen that I noticed the change to Mike's eye only after ENT began to poke around up in the maxillary sinus. The ENT docs assured me that scoping wouldn't cause swelling or bruising around the eye. In my mind though, I could see a clear cause and effect, and I felt especially sure the exams had something to do with this because of Mike's extremely low platelets. Still, I was told it was "just a coincidence." Due to the low platelets, however, Mike's oncology team was reluctant to give ENT the go-ahead to biopsy the sinus area. So, we just watched and waited through most of last week, and Mike became increasingly anxious and upset each time a doctor or nurse would ask him about the eye.
By this time, Mike's fevers continued, and he routinely needed some combination of Ativan, Dilaudid, Zofran and Demerol to deal with nausea, shaking chills and anxiety. Last Thursday morning, after dealing with some fevers through the night, he started having shaking chills and I had to begin piling blankets on him. At that point, his temperature was only in the high 99s, but as we have learned, the chills usually precede a fever spike. After the nurse took his vital signs, she gave him some meds to calm the chills. He was shaking so uncontrollably and was so miserable though that he asked for two milligrams of Dilaudid, where he was usually only getting one. He also had hot packs under the blankets in a futile attempt to warm him up. I tried to rub him to keep him warm and soon he was knocked out from the meds. I sat over on the couch watching him and praying as much as I could. I didn't like the way he looked or how this fever and chills episode seemed worse than usual. I sat with my Bible and went back and forth between Psalms 91 and 103, just praying for Mike's protection and healing. I kept looking over at him though, and didn't like the deliberate and strange way he was breathing. I sat on his bed and would wipe away the beads of sweat on his forehead. I softly ask him how he was doing, but wouldn't even get a response out of him. The Dilaudid had him so knocked out that I don't think he even heard me. Then, I reached over and touched his arm. I was startled. He felt hotter than I ever felt him to be. I immediately got up and poked my head out of his room. I didn't see his nurse at the nursing station, so I got the attention of one of the other nurses who was coming out of the room next door. I told her that Mike felt really hot and asked if she could come check on him. She came in and took his temperature. It was 105 degrees. From that moment, everything changed. The nurse started taking his other vital signs while another nurse joined her in the room. Blood pressure was 80ish/50ish. Heart rate was 175. Mike was going into septic shock. He was still semi out of it from all the drugs, so he wasn't feeling the panic I was feeling, but I knew it was bad. Within minutes, other nurses as well as doctors on the floor started entering the room. It wasn't exactly a "code blue" situation, but it sure felt like it. There was a collective calm urgency among the staff as they talked and worked. At times it seemed as if there were close to a dozen staff members in and around the room, with nurses and nurse managers standing by outside the door. His attending oncologist was even paged. They started several different bags of fluids going into him at a rapid rate. They put ice packs on him and a cold cloth on his head. They put a nasal cannula on him to administer oxygen. The t-shirt he was wearing was 100% soaked, as if he had worn it in the pool. I just stood there in my pajamas, trying to stay out of everyone's way, and trying to stay calm. I tried to de-code all the "doctor-speak" that was going on, and a couple of the nurses would take turns standing next to me and explaining what was being said and done as they worked. They put him on a monitor so they could keep a constant eye on his vitals, and they began taking his blood pressure and temperature every five minutes or so. They immediately started him on a very strong IV antibiotic to try to get whatever infection was in him under control. They got another IV ready that would be used to raise his blood pressure. The staff then started talking and making plans to move him to the intensive care unit where they could give him medicines that couldn't be administered on the oncology floor, and to get him stabilized. In all the chaos, you tend to lose track of time, but I'd say within a half hour to 45 minutes of this all starting, he started to respond to all the efforts. Soon the temperature readings began to drop -- 104s, 103s, 102s.... The heart rate began to drop -- 160s, 150s, 140s.... The blood pressure slowly began to rise. He was beginning to stabilize. I could start to see the relief in the faces of the nurses and gradually the number of people in the room began to dwindle, until just one or two of the doctors were keeping an eye on things along with several nurses. I could breathe again. I stepped out and went down to the lounge where I called my in-laws and, in the calmest way possible, told them what was going on. They immediately left the house to make the 26-mile drive to the hospital. Shortly thereafter, Mike's youngest sister came walking hurriedly down the hall as she had gotten the news from her mom. Visibly shaken, she welled up with tears as she saw me and we just hugged outside Mike's room. By that time, he was in a lot better shape. I told her his temperature was now normal, and his vitals were much better than just an hour before. It was at that point that the staff decided he was well enough to remain on the floor and would not need to be transferred to the ICU.
In the following hours of that afternoon, I sat with my Mike's parents and sister in the room and were just happy to be there with him, even as groggy as he was. My in-laws went out and got me some lunch, and I was able to step away briefly to get a shower. Mike was in and out of naps and joined in some conversations when he was able, but that was fine -- he was in a much better place than he was just several hours earlier and that was more than enough for us. One of Mike's other sisters, Mary, stopped by around dinnertime and she kept me company for a few more hours after the others headed back home. Now, one would think the morning's episode was enough drama for the day, but there was more to come. By late evening, the ENT doctor was back. She came to once again examine Mike and scope the sinus, but also to reiterate her growing concern that the unrelenting fevers and worsening of the eye could speak to a fungal infection. If this was fungus, they had to move quickly. For this reason, she strongly recommended doing a bedside biopsy of the sinus. At this point, Mike was so wiped out from the day's events that he asked her why this couldn't wait until morning, where it could be done in the operating room under a light sedation. After all, various docs had been poring over his head CT/MRI results for days -- what was the rush? She was pretty firm in her response -- if this was an invasive fungal infection, it could spread very rapidly and in no time at all this could become an extremely serious situation. Her colleague also went into details about what they would have to do in the case of fungus -- very serious talks with the doctors about surgery to remove the affected tissue, how aggressive they would want to be, etc. It was not a pretty picture, and we knew this was true because we were warned of the same possible scenario back in January when he had the first scare with the sinus (which turned out to be tumor). All Mike could focus on was how painful the sinus biopsy was in January. For reasons I will never know, they didn't numb him nearly enough and he felt every bit of that first biopsy. These docs assured him that he would be numbed locally, and would be given systemic pain killers as well. Either way, it was made clear -- the doctors needed a definitive answer on what was going on in the sinus/eye, whether it was fungus, tumor or a combination of the two. Mike agreed to the biopsy.
Mary stayed with me until the biopsy was about to begin, then she left so as not to get in the way. I gave a quick call to my friend Rene, who prayed for Mike and talked me through my anxiety. The two ENT docs began to pre-medicate Mike around 10PM and soon after began the biopsy while he was also given a bag of platelets. I was a wreck. I didn't think I could be more frightened than I was that morning, but I was beyond scared. I sat on the couch as they worked, not being able to even watch them. I sat there with my Bible, re-reading the same psalms I read earlier in the day. I just kept repeating them over and over, and rocked myself back and forth, as if in a trance. As much as I tried, I couldn't get my mind off what could be headed Mike's way if he had a fungal infection. Would they have to get him in for surgery the next morning? Would he need facial reconstruction? Would he lose an eye? It was all very possible. I was so uncomfortable in my own body that I wanted to jump out of it and run away. By 11PM, the biopsy was done and all went well. I texted Mike's family to let them know it was done. The ENT doctor sent off the sample, and said they should know within about 45 minutes or so if any fungus was seen in the specimen. She then left to go see another patient and I was all alone while Mike rested. It felt like the longest 45 minutes of my life. I was so consumed with fear that I didn't know what to do with myself. I tried everything I knew to do -- read my Bible, prayed, rebuked any negative thoughts or reports. I tried it all. I just kept asking God for a miracle, because that's exactly what we needed. A little while later, Mike's nurse, Annie, came back into the room to do a few things. While in the room, she was beeped that she had a call out at the nurse's station. Moments later, she came back in the room. Annie, in her mother-hennish way, smiled at me and said, "That was the ENT doctor. It's not fungus." I couldn't believe it and had to hear it again. I think I asked her twice, as I welled up with tears, "It's not fungus? It's definitely not fungus??" I just started to cry and asked her for a hug. The weight of the past few hours had been stripped from me. I could breathe again. We had gotten the first part of our miracle. I just went over to Mike and kept telling him how much I loved him. I again texted Mike's family with the news and they were elated. I knew we still had to wait out the rest of the biopsy to see if it was tumor, but at least we made it over our first big hurdle. I was soon able to settle in for the night (well past midnight by this point) and get some rest. The ENT doc returned an hour or two later to retrieve the rest of her tools, and she came into the room to tell me herself that they didn't see any fungus on the preliminary biopsy. I thanked her for making the call over to us as soon as she got the news and she said, "You're welcome. I would have wanted to know if it was me."
Over the next few days, Mike had some small fevers that came and went. He rested a lot and both the physical therapist and nurses tried to encourage him to get out of bed and walk a bit. Since his recent bronchoscopy did show some fungal markers, they wanted to keep the lungs active. The antibioics and antifungal medicines continue, as they keep him covered for a variety of bugs they've found in his system. Yesterday, Mike's doctor even told him he should go outside for a bit and enjoy the nice weather. We were surprised he would be allowed to do that, so it was a wonderful treat! His nurse wheeled him outside and for about 45 minutes we just sat and talked and enjoyed a change of scenery. I think it did him a world of good to rejoin the land of the living for a while. And earlier today, we received more good news -- the final pathology of the sinus biopsy showed no cancer either. Praise God.
Now we continue to wait for the fevers to fully subside. We wait for Mike's white cell and neutrophil counts to come up (they're still basically zero). We wait for things to turn around in our favor. We need rest -- mentally and physically. Most nights are not restful at all, between the nurses coming in to take vitals, or the resident bombing in the room at 7AM to do his exam. There was one night when Mike had a nosebleed for almost four hours (from 11PM to 3AM); another night when his port bled nearly every hour through the night (just before they decided to take it out). This hospitalization has been way longer and more mentally gruelling than we ever anticipated. I am afraid to leave Mike's side for any length of time in case he needs me. During the night I stir at the slightest noise as he usually needs me for an extra blanket or to call the nurse. The entire experience has been a series of one step forward and three steps back. We now wait to see if a bone-marrow biopsy can show why Mike's blood counts haven't yet recovered. We need serious prayers that it's not because of the leukemia.
Yes, we are treading in deep waters, but I am holding onto my belief that God will lead us to shore.
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