“Merry Christmas from Heaven”

“Merry Christmas from Heaven”
by John Mooney

I still hear the songs
I still see the lights
I still feel your love
On cold winter nights

I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers

I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd

Keep trying each moment
to stay in His grace
I come here before you
to help set your place

You don’t have to be
perfect all the time
He forgives you the slip
if you continue to climb

To my family and friends
please be thankful today
I'm still close beside you
in a new special way

I love you all dearly
now don't shed a tear
cause I’m spending my
Christmas with Jesus this year

You're Still the One

Last Sunday, November 13, was our seventh wedding anniversary. I spent the day with Mike's large family, having dinner at my sister-in-law's place. We tearfully watched our wedding video, and smoked cigars in Mike's honor.
Each day now seems to be getting worse instead of better. I don't know how to live life without my perfect partner. I feel as though part of me has been amputated.
I now wear Mike's wedding band on a silver chain around my neck. You're still the one, baby.

Peace

Mike passed away on the afternoon of Friday, October 14.
I can't even believe I just typed those words.
My only comforts are knowing he is no longer suffering, and that his final concerns were to make sure his family, and me in particular, would go on and find joy in life again. I can't imagine that happening, but I am willing to try, only for him.

Please Join Us Tonight at 9

Today I sent this to those we know and love:

Dear friends and family,
I'm writing to you again to ask for your prayers for Mike. He has been in the hospital since Aug. 30, when he was admitted to try a new five-day chemo regimen. After finishing the chemo, we began the wait for his body to recover and for his body to begin producing new, healthy white blood cells. As of today, that hasn't yet happened.
Mike has been on numerous antibiotics and antifungal medications for weeks, trying to control various bacteria and fevers in his system. So far, the doctors have been able to control things as well as possible with medicine, but ultimately what Mike needs is for his own immune system to return. The doctors performed a bone-marrow biopsy two weeks ago, and found the marrow to be empty -- no sign of leukemia cells, but also no sign of new normal cells. They plan to repeat the bone-marrow biopsy this week.
More than ever, we need your prayers. By all reasonable accounts, Mike's body should have recovered by now. Needless to say, the doctors are quite concerned with the lack of recovery, as well as the persistent fevers and infections. We ask that you add Mike to any prayer lists you may have, and to ask for the prayer support of those you know. The doctors are doing all they know how to do, but we need the power of prayer to pull him through this. Specifically, these are the areas of prayer needed:

-- for Mike's bone marrow to begin producing healthy, normal immune cells (whites and neutrophils) which will pull his body out of its current sickness and extreme vulnerability ******most important******
-- for Mike's infections to be brought under control and that no new infections pop up
-- that Mike's fevers, chills and nausea subside so he is less dependent on symptom-management medication and so that he is able to eat
-- that no more cancer recur in any part of his body, especially the marrow
-- that Mike's state of mind improve and that he feel encouraged in the coming days and weeks
-- that the wonderful hospital staff here continue to do all they can within their abilities to get to the bottom of this situation

I am asking you all to take a few minutes tonight, Monday the 10th at 9PM eastern time, and pray for Mike's improvement. Please encourage those you know to join us at this time as well and stand in agreement for Mike's healing. One thing I've been learning from a dear friend (thank you, Rene') is to not only ask God for Mike's healing, but to expect it. We need people who will stand on God's word and promise of healing and a future for Mike. Please stand with us and believe in this healing.

Love,
Lauren

While I'm Waiting

There have been more ups and downs over the past week. The quick re-cap is a) consistent fevers, b) still no white cells or neutrophils. Each day pretty much feels like the day before. When there is a day, or even an hour, of some "highs," I'm afraid to let myself get too excited because I know the "lows" won't be far behind. Mike spent a lot of the last week on meds for nausea and chills (the Ativan/Dilaudid/Demerol/Benedryl cocktail). There were a few days that he spent either sleeping or completely loopy. He would have hallucinations of people or things that were(n't) in the room, or say the strangest things that made no sense. I finally decided it was best not to correct him, but rather to just agree and go with it. It was almost like having a dementia patient on my hands -- both sad and scary. He would even be in a sleep and suddenly start having a conversation with someone who wasn't there, or reach out for things that didn't exist. The doctors, in conjunction with palliative care, finally decided to seriously cut back a lot of his meds. I don't want him to be uncomfortable, but I don't want him to be somewhere else, either.
The week included repeat CT scans and x-rays, each showing no real changes or new areas of concern. The docs continued to juggle his antibiotics based on the results of the daily blood cultures. They even mentioned that they'd like to do a repeat bone-marrow biopsy this coming week to again check the marrow to see what's going on. Mike is on about day 40 since starting chemo, and by every reasonable standard his body should be recovering by now. It isn't.
On Friday morning, during the doctors' rounds, we pretty much got "the talk." The doctor, while obviously trying to remain gently encouraging, was making it clear that they're very concerned with the fact that Mike's body isn't producing any immune cells. Since the doctor wouldn't be in again until Tuesday morning, it's almost as if he was preparing for Mike to get worse between then and next week. He started talking about what Mike's wishes were should his condition worsen, and it be necessary for him to be moved to ICU and require intubation or a breathing machine. (In situations like that, he said, the chance of recovery is about less than one percent.) He then asked us if we had any questions. Mike didn't, but I knew I had to speak up. I knew I had to go out on limb and make something known. I said, "I don't have a question, and I don't normally talk about this stuff, but I just want to say that even though things may not look so good medically, our faith tells us something different. We still believe in a God who heals." In the room of two doctors and three nurses, I seemed to get the polite, pitied smiles, and Mike's primary nurse -- who just happened to be up in the room for a visit -- even put her hand on me as if to tell me it was OK to believe that. The doctor was polite and didn't really challenge me on it, but he again reiterated the seriousness of the situation, and that with no immune system and multiple infections, we wouldn't have gotten this far (over the past nearly six weeks) on faith alone. I can see the concern in everyone's faces. It's almost as if they don't think he will recover. But I know what I've been learning lately, and I had to put that out there. I had to make it known.
Mike is currently on some oxygen, which he really only seems to need while sleeping, and they have him on a heart monitor since his heartrate has been elevated. He isn't eating much at all, and up until tonight hadn't had a bowel movement in over a week. He's so weak that I have to help him get up each time he needs to pee (which seems like it's every hour and a half). Even overnight I stir at every sound he makes. Neither one of us gets much sleep (though at least he gets drugs). Nights are the worst, when things are less busy and more quiet, with less people around. The eerie calm makes me feel even more uneasy and alone.
Yesterday, I bought a dry-erase marker board for the room and have decided to write a "healing promise of the day" to keep before our eyes. Today's is: "For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope." ~ Jeremiah 29:11
I also found and have adopted another scripture, that I will pray and pray as I believe for Mike's body to begin healing: "Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the LORD, and depart from evil. It shall be health to thy navel, and marrow to thy bones." ~ Proverbs 3:5-8

Still Thinking of Me

Mike just said the sweetest thing to me. He was lying in bed, trying to get the chills to calm down, and I was tucking him in around his chin. He looked at me and said, "I don't want you to feel neglected." I asked him what he meant, and said I wasn't feeling that way. He said, "I just don't want you to feel neglected in all this.... I haven't been able to hold you." Seeing him starting to get emotional and trying not to get misty-eyed myself, I told him there would be plenty of time for that and not to worry.
I do miss my husband.

And So We Wait

Evidently, the only thing that will get Mike out of this hospital and back in our home will be for his white cells and neutrophils to start rising. As yet, they are still zilch.
Fevers are still a regular part of the day, preceded by shaking chills. Overnight last night Mike's temperature peaked at 103. With every fever within a 24-hour period, the nurse has to draw blood cultures. It takes a couple days to get those results -- some show bacteria, others don't. The doctors are still on the hunt for a source of these fevers, especially since Mike is on a variety of broad-spectrum antibiotics that should cover each bacteria they have found. Today they did an ultrasound of Mike's legs and abdomen. They were checking the legs for clots, and checking the liver for any blockages. Mike's bilirubin numbers are now elevated, and though they think it's because of all the meds he's on, they had to rule out bigger things. The ultrasound was clear.
Last evening, we had another "incident," though on a much smaller scale than the ordeal of a week ago. As most other days, Mike had received a variety of sedatives to control the nausea and chills, and the last drug given -- Dilaudid -- proved to be too much. He almost immediately became knocked out, which I guess is the point, but he also started breathing a bit funny and had a blood pressure reading of around 155/100. His oxygen level was around 90 or less (should be mid to high 90s). Mike's nurse, Annie, even thought his pupils looked uneven. She paged the house officer, who came in and started examining Mike and asking him questions to try to see how coherent he was. She asked him where he was, to which he answered the name of our hometown instead of the city of the hospital. She asked him what month it was an he said it was February. He was clearly not with it. They started him on the oxygen, did an EKG and then gave him an injection of something used to reverse some of the effects of the sedatives. Shortly thereafter, he was a bit more alert and the doctor was confident that what happened was just a result of too many meds. The doc then discontinued the administration of Ativan for the time being.
Today they had Mike stay on the oxygen for almost the entire day. He did a lot of sleeping, as usual, but he also spent the second part of the day sitting in the recliner instead of lying in bed. With the football games on TV, it was almost like having a tiny taste of being home. I made known to both the doctor and the nurses my concern for all the meds he's being given. I told them that I obviously don't want Mike to be uncomfortable, but let them know he spends way too much of the day and night in a sedated and confused state. To be fair, Mike is also asking for these meds just about as often as he's allowed to get them, but I don't think he realizes how strung out they make him. And it doesn't help that all this hinders Mike from getting up and moving or walking, as he needs to do. It doesn't help that all this has caused him to lose strength and clarity of mind.
Tomorrow the docs may want to do a repeat bronchoscopy to check on what's still brewing in the lungs. They may also check the heart again with an echocardiogram. I don't think there are many more places they can poke, prod, scan or x-ray him.
Please continue to pray for Mike's swift recovery from this ordeal. Please pray against the fevers and infections, and for Mike's marrow to begin making normal, healthy cells. And please stand with us in believing God's promises of health, healing and new beginnings.

A Break

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....

"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.

In the Closet

A hospital is the worst place in the world to be when you're trying to believe that God wants us all to be healthy.

Yes, Mike had another hospital stay a couple weeks ago. This stay only lasted four days -- one of his shortest ever. He came home from a checkup one Tuesday afternoon (where he received a bag of blood and platelets) and within minutes of getting home, he felt chilly. He took his temperature and it was 101 degrees. Since his neutrophils were extremely low, the doctor wanted him to come right back in, so I immediately left work and brought him back to the hospital where they admitted him until that Friday. Thankfully, the fevers were under control quickly and the tests they ran didn't show any infection. Personally, we think the fever was a reaction to the blood products he received hours earlier, but with low blood counts the doctors couldn't take the chance that it was something more.

Since getting home from the hospital, Mike's counts have gradually come up with the help of nightly injections to stimulate him immune system, but his body doesn't seem to hold platelets well and he continues to need infusions with each checkup. With this past Friday's checkup, Mike's immune system showed it was strong enough that we were able to have lunch out in a restaurant yesterday and spend some time shopping together. It was such a nice change to do "normal" couple things again.

I'm trying. I'm really trying to think positively and believe in a change for the better. I keep waiting for the visible turning point, where I see the tide start turning and I can finally say, "The miracle has come. Thank you, Lord." But mostly I just see miracles and healings as things that happened in an old book, or that happen to other people you see on "The 700 Club" or some other evangelism show. I really don’t know anyone who’s been healed, and I’ve never seen a healing. It’s hard to believe in this stuff when it's not tangible.

I almost forget what life was like before cancer. I almost forget what it feels like to wake up each day and have joy, not fear. This disease is cheating us of our lives – and God is just standing by letting it happen. I have too much faith to walk away from God, but I have too much doubt to lean on Him completely. Growing up, we had a dog -- a beautiful collie named Shep. My brother and I would play tug-of-war with Shep with whatever toy he had (an old doll, a chew toy, a towel, etc.). Being kids who didn't know any better, my brother and I would try to win the tug-of-war game every time until my dad clued us in. He said, "You have to let the dog win once in a while or he'll get frustrated and won't want to play." It may be a bad analogy, but that's how I feel with God. I feel like He and I are in this enormous tug-of-war. I pray and pray and simply ask that the love of my life be spared and allowed to stay here with me so we can build a life together. Yet, every prayer I pray and have prayed for years now seems to go unanswered. I have gotten so frustrated in my prayer life that I don't want to play anymore.

A few weeks ago on a Saturday morning, Mike said to me, "Can I tell you about a dream I had last night without upsetting you?" Sensing my apprehension, he immediately qualified that it had nothing to do with his health (whew). He proceeded to tell me that he had a dream that we were at my grandparents' house, and we were there with a little toddler boy -- our son, who we called "MAC" (these were the initials for his name; Michael after Mike and Alfred after my grandpa). "MAC" was sitting on my grandpa's lap, and Mike said he could see the joy on my grandpa's face, like he was just eating up every second with his first great-grandchild. And my nana was there, gently and playfully scolding little "MAC" for something mischievous he had done. I thought the dream was so sweet, but it did sadden me. I was saddened that Mike was worried about telling me, that he might somehow upset me. Yes, his dream does touch on a particular sadness of mine. As I've said before, one of my greatest hopes and prayers is that my grandparents live to see the birth of my children. I've watched my grandparents age. Generations get older, can’t do the things they used to do, even pass away. New generations help fill these voids. I realize that we don’t have the new generation to brighten our lives and breathe new life into the family. There's no new life to fill that void.

I titled this post "In the Closet." I chose that title because of something that recently happened. A few weeks ago, Mike was having a particularly difficult night emotionally. I forget exactly what set him off, but it was likely due to some physical symptom he was having which was wreaking havoc with his mind. We were sitting in the den watching TV and he got really quiet, which I knew meant he had lots on his mind. Suddenly, he got up and walked back into the bedroom. I didn't know what he went in there for, but I let him alone for about five or 10 minutes. Finally, I got up to go find him to see what he was up to, but as I approached the room I didn't find him lying on the bed or puttering around the room. In the darkness, I called for him and asked where he was. I heard him answer, but not from the place I was expecting. He was in our walk-in closet, sitting alone in the dark on my storage box full of shoes. He just had so much fear and anxiety in him that he didn't know what to do anymore. I turned the light on, crouched down beside him and just let him talk. I tried my best to reassure him that he was OK. But I also know him well enough to recognize when he doesn't need a pep talk, but rather just needs to let out his frustrations. Mike and I both have our "in the closet" moments when we're so frazzled and lost and don't know what to do with ourselves. Now, we sit and wait for someone -- anyone -- to lead us out of this darkness and back into the light.... and life.

Mind Games and Mockery

Today Mike went for an acupuncture appointment, which he really needed since he pulled some back/shoulder muscles on July 4 weekend. The acu/massage also helps treat the leukemia. All was going well until he got up from being face down on the table, and noticed some blood coming from his nose. It wasn't pouring out, but the sight of it shocked and scared him. He already knew that his platelets were dropping last week (probably disease-related), and by starting chemo they would probably drop some more, but it was still a jolt. All day he's been haunted by this. He called one of his nurses and she said that he should be fine as long as the blood wasn't gushing, or he didn't have any other symptoms. Plus, he has a checkup tomorrow anyway. But, thus goes the mind games of cancer.
Add to that the fact that one of our friends just found out she was pregnant -- a surprise pregnancy for her. We are happy for her, as she and her husband have gone through infertility, and had resigned themselves to the notion that their son (conceived through IUI) would be an only child. Still, not the news we really want to hear while we're going through hell.
Another friend (also an infertility grad with a son and daughter conceived through IVF with donor eggs) recently found out she was pregnant with a surprise baby. Last week, just before Mike called to tell me that his platelets were dropping, she texted me with the message, "It's a girl!"
I'm sorry if I'm just not jumping for joy. I know I shouldn't be envious, but our crap just piles higher and higher while everyone else gets their blessings.
If anyone knows the magic words to getting their prayers answered, please let me know.

P.S. I have set up an e-mail address specifically for this blog, so anyone who wants to e-mail me privately can do so. That address is: makingofamommy@yahoo.com

New Regimen

Mike and I took communion at home a few hours ago. We tried to thank God, praise Him and ask Him to take away the sickness. Mike will re-start an out-patient chemo regimen in the morning. I'm not thrilled, but we have little choice. All we can do is see where this goes. I'm exhausted and heading to bed.

To Anna

Anna,
You left some wonderful messages on my last post and I wanted to thank you from the bottom of my heart. I really needed that encouragement from an unexpected place. It doesn't look like you have a blog so I don't know how to reach you, but I hope you check my blog again so you will see this message.
Standing on what I believe are God's promises has been one of the most difficult and frustrating things in this eight-and-a-half-year cancer journey. We're almost at the point where God will have to be our only way out of this -- and hey, maybe that's the whole point.....
Thanks, again.

"God Is Gonna Do This"

Another round of chemo, another stay in the hospital. This past Sunday, Father's Day, Mike returned home after spending two and a half weeks in the hospital. He started a new, different round of chemo before Memorial Day and it hit him very hard. He had a fever of over 102 degrees just 12 hours after the first dose, but which his doctor assured him was a "normal" reaction to the chemo. He only received half of the normal prescribed dose of this drug and it still wrecked him. A few days after Memorial Day, he was getting more fevers, chills and felt totally wiped out. We went into the clinic and they admitted him to the hospital on June 1. What we thought would only be a few days' stay turned into 19 days. It was so hard to know when things would get better, and what the coming days would bring.

During this time, I reached out to a woman named Rene, whose testimony I read in a book about God's protection and deliverance. Rene was diagnosed with late-stage lupus over 10 years ago, and was given only months to live. Through an array of ups and down, hospitalizations and many instances when doctors told her she was dying, she stood on God's promises of healing and was eventually healed of her disease. She now has a ministry, lectures, and is finishing a book about her experiences. We began corresponding and she has been a tremendous sources of strength for me. We finally spoke on the phone last night where she told me more of her story -- her testimony in the book didn't even tell half the story of how bad off she was. Rene encouraged me to stand on God's promises, be bold, and she told me regarding Mike's deliverance from this situation, "God is gonna do this."

Below are the e-mails I sent to friends and family during Mike's hospital stay....

June 7:
Hi, everyone. If you're getting this e-mail it's because I know you are brothers and sisters in Christ and we are asking for your prayers. Mike's been in the hospital since last Wednesday with fevers and infections due to low blood counts following a chemo cycle. They have identified the bacteria in his body, but he continues to get fevers, nausea and vomiting. He does have some pneumonia and a possible fungal infection in his lungs. Some moments he feels well and is up and around, and other moments he feels very washed out. Again, the fevers -- in spite of lots of antibiotics -- are cause for the doctors' concern. That, along with the low blood counts that have yet to rise are a problem.
Please pray for Mike's recovery. Please pray specifically that the fevers permanently break, that the infection(s) clear, that his blood counts rise, and that the doctors and nurses receive wisdom so that this can be figured out.
Please add him to any prayer chains or prayer lists, and please enlist the help of any fellow prayer warriors.
Thanks to everyone.

Love,
Lauren

June 11:
Hi, everyone. I just wanted to pass along the latest about Mike.
A bronchoscopy the other day did show some bacteria in the lungs, which is what the doctors were suspecting. Since they found bacteria there, they didn't feel it was necessary to pull out the port in his chest (which can harbor bacteria, and was the other leading suspect for causing the fevers).
In the past few days, the fevers have come down significantly. I think the highest he's hit in the past 24/48 hours was 100 -- a huge improvement from the 101/102 temps he was getting. The doctors are very happy about the fevers breaking, but Mike's blood counts are still very low. They're not sure why his white cells are taking so long to rejuvenate, and it's very frustrating for us as Mike's never taken this long to rebound from chemo.
So, he's still stuck in the hospital and is getting very antsy and emotionally spent. Please pray specifically that the fevers continue to stay away, and that his blood counts begin to rise. We really need the white cells to start coming up. They were up a tiny tick this morning from yesterday, but we still need a big improvement in numbers to jumpstart the immune system. Please pray for his bone marrow and healthy cell production!
In the midst of this recovery, please also pray that the cancer stays quiet, and that it retreats entirely!
Thank you all, and I'm sorry that I haven't gotten to individually respond to the e-mails some of you have sent me. I appreciate all the kind words!
I'll continue to send updates as things improve.

Love,
Lauren

June 15:
Hi, everyone.
Just wanted to pass along the latest. We're still at the hospital. The fevers have subsided, but the blood counts are still stagnant. They started daily neupogen shots yesterday to stimulate the marrow to produce white blood cells. Today the white count was the same, but the neutrophil count was up. Neutrophils are a component of the white cell count, so seeing that rise is probably a good sign that the overall white count will soon increase as well.
They're in the process of switching Mike's IV antibiotics to pills, so that when his counts rise he'll be ready to go home. We still don't know when that will be -- we're hoping no more than a couple more days.
The doctors still don't know why his counts haven't begun to rise on their own after all this time. They don't think it's disease related, and they said a marrow rejection this long after transplant would be unusual. But, whatever the cause, it looks like there might finally be a little improvement.
Other than being completely stir crazy and frustrated, Mike's doing pretty well overall.
Please continue to pray for those blood counts -- that's the only thing keeping us here and each morning's blood draw brings a lot of stress and frustration waiting to hear what the numbers are. Lots of healthy white cells and a strong immune system are at the very top of our prayer list! I've committed to praying Psalm 91 over Mike's situation throughout this journey. Everyone is welcome to pray it along with me!
I'll continue to keep you all updated.

Love,
Lauren

June 19:
I am thrilled to say that Mike was released from the hospital earlier today and is enjoying the comforts of home! His counts made a very good jump in the last couple days, and the doctor didn't see a reason to keep him any longer. He'll go to the outpatient clinic one day this week for a checkup, but he doesn't mind -- we are home and resting up from a very long, and unexpected, two and half weeks in the hospital. What a great Father's Day gift to both our dads.
Thank you all for the prayers and support. Please continue to pray for continued recovery from the treatments and infection, and that we are finally on the road to divine health.

Love,
Lauren

Back Again

After another long blogging absence, I’m back. I apologize to anyone who regularly follows this blog and isn’t connected with me on Facebook to get my updates.

First of all, Mike is fine. Since my last entry, Mike has completed his radiation and two planned inpatient chemo rounds, each lasting about a week. They gave him high doses of methotrexate, hoping to kill the cancer cells including the ones found in the spinal fluid (methotrexate is one of the chemos that will cross the blood barrier of the spinal column). His liver did take quite a hit, though. His liver function tests spiked after the first round, then gradually came down in the following week. The numbers also spiked with the second round, but they went even higher than the first time. As a result, it doesn’t look like they will want to do a third round of this. Instead, they will likely find an out-patient chemo schedule, followed by a maintenance treatment plan. Alongside the chemo, Mike is diligently taking part in Tong Ren treatments to give this cancer an even bigger kick in the arse.

We’re also praying, but as usual of late, I’m on and off the wagon with it.

Between the two rounds of chemo, we snuck in a long-awaited vacation to Mike’s parents’ house in Florida. What a needed getaway. It did us both a world of good to get down there, especially since we hadn’t been there for three years. The warm, dewy air was the best thing in the world for Mike’s dry eye and sinuses. We didn’t want to leave!

Now, it’s back to reality – doctor visits, waiting to see what this week’s blood counts are, fever watch, germaphobia, etc. I’m also treated to my favorite conversations at work – listening to my co-worker talk incessantly about her daughter’s latest pregnancy, thinking of baby names and whether it’ll be a girl or not according to her Intelligender test. One day I even got to listen to her explain to another co-worker how much different pregnancy is when you’re older, and how hard it can be after age 35 (gee, thanks). Instead of measuring blood counts and liver levels, we should be measuring betas and sonogram progress, shouldn’t we?

But every step of the way, there is Mike, as supportive and loving as ever. A few weeks ago, I actually woke up at 5:50 AM to watch the Royal wedding. Mike e-mailed me at work later and wrote, "Every morning I wake up happy knowing you are the love of my life. I never think I could love you more, but then you do adorable stuff like getting up to see a silly wedding. It means you still have hope in your heart. It means you still can dream. It means you still enjoy life, despite what I've put you through."

Last Saturday night we took my mom out to dinner for Mother's Day. When Mike signed our copy of the debit card receipt, he wrote me this note (whenever he fills out a receipt like that he writes me a little note so I see it when I go to write it in the checkbook):



In a horrible irony, it's a little easier to handle infertility when we're thrust into one of Mike's health-related storms because the latter has our total focus. But when Mike is doing well and feeling better, the emptiness of childlessness becomes more apparent. Naturally, Mike's health is the most important thing in our lives, but it seems one way or another our hearts are being wrenched by something. With each new pregnancy announcement from a friend, with each birthday, with each day my grandparents get older and more frail, I worry about my window for motherhood getting smaller and smaller.

Lord, please don't close that window without opening a door.

A Dangerous Thing

One of our favorite movies, “The Shawshank Redemption,” is on AMC tonight. I’ve always found Andy Dufresne’s statements about hope so simple yet inspiring, so much so that I even use one of his quotes on the sidebar of this blog. Lately, though, I find myself wondering if Andy’s friend, Red, has a more accurate position on the subject. According to Red, “Hope is a dangerous thing. Hope will drive a man insane. It’s got no use on the inside. You better get used to that idea.”

Right now I’m on the inside.

Over the past nearly seven weeks since Mike was released from the hospital, I have taken up residence in the front seat of the emotional roller coaster. I’ve gone from gratitude for the small things, to cautious optimism all the way to obscene anger at God. I’ve tried to be the upbeat wife while dying a little inside with each sign or symptom that things weren’t swiftly getting back to normal. Mike, weakened from the sepsis, chemo side effects and muscle atrophy from two weeks in a hospital bed, would have me as his shadow every time he’d get up from the recliner to go to the bathroom or just stretch his legs. Slowly, his strength did start to come back, but he couldn’t seem to shake a nagging pain in his left sinus. During a mid-January spinal tap, cancer was also found in the central spinal fluid, where it hadn’t been only a month earlier. Finally, on the morning of January 28, Mike woke up with his left eye swollen shut. He looked like Rocky after taking a beating from Apollo Creed. We immediately went to see both his oncologist and his eye doctor. That day was a whirlwind while various doctors conferred to try to determine if this mass in his sinus was the leukemia or a fungal infection. A biopsy that evening showed it was the cancer. In retrospect, a fungal infection would have been a hundred times worse (as the doctors explained later), but hearing about yet another location for the cancer was deflating to say the least. He was admitted to the hospital yet again, and localized radiation to the left sinus was started the following afternoon. Just a couple hours after the first treatment, the swelling already started to go down and the eye began to open. He was kept in the hospital until the following Tuesday, getting the localized radiation each day. They halted chemotherapy during this time so he wasn’t being bombarded with treatments. Since he’s been home, he’s been going in for radiation each weekday and will have his last treatment this Thursday. Then, he and his doctors will re-group to decide what course of chemo to resume and when to begin.

Aside from some fatigue from the radiation, Mike has been feeling pretty well. We’ve been doing some complimentary therapies during this time to make the most of his break from chemo, and to put our best effort into beating this. But the “what ifs” are still overwhelming. Is it healthy to keep hoping that this will all end (for the better) soon? I’ve had to battle some horrible thoughts. I’ve been holding fast to a book about Psalm 91, and have been praying that psalm over and over, begging God for his promise of protection. My anger at God has subsided a lot over the past few weeks, amazingly, but I’ve still had my issues. I still wonder if my prayers are being heard. When reading biblical or modern-day stories of healing, I feel like I should see a disclaimer flash across my eyes, saying, “Results not typical. You should not expect to experience these results.” I have to fight hard against that.

Sometimes I’m so engulfed in survival mode that my hope in previous dreams seems to fade further and further away. Sometimes reality versus fantasy collide though, like when I was giving Mike his nightly shots of Neupogen, and I’d throw the used syringes in the same detergent bottle that still hold my old progesterone needles. Dreams versus reality.

Is it worth hoping that we will get past this and actually have a life beyond cancer? Is it even healthy to keep dreaming when reality just keeps smacking us in the face? Either Andy or Red was right. I just can’t decide who to believe.