Breathing Easier

Firstly, we had a good reason to be thankful and to praise God this morning. Michael was able to sleep better than he had in many, many nights. Previously, Michael had only been able to sleep for an hour at a time before waking up to cough and spit up fluid. Last night he was able to sleep twice as long. That may not seem like a good night's sleep to most of us, but to him it was a huge improvement.

Today's appointment went well. The pulmonologist listened carefully to our concerns and thoughtfully responded with a treatment plan. The first thing he had Michael do was remove the borrowed portable oxygen tank for a few minutes so that they could get an accurate pulse-ox reading. With the oxygen, Michael's pulse-ox had been 93. Ninety-six to one hundred is considered normal. Our insurance company wouldn't pay for any oxygen system unless the pulse-ox was 88 or lower. Well, once he was off the oxygen for a few minutes, his pulse-ox bounced back and forth between 88 and 89. The nurse called it a 88, and the doctor prescribed a portable oxygen system for Michael. This will come in handy whenever he has to leave the house.

After quite a bit of discussion, the doctor decided to keep Michael on the low-dose steroid he's been on since his hospital stay last month. He said it was such a low dose that it's probably not doing much for him inasmuch as increasing the elasticity of the lungs as intended, but we agreed that it was helping Michael's appetite and the doctor thought that was reason enough to continue taking it. He also prescribed an oral medication for Michael's cough that can be taken up to three times per day.

It was his opinion that Michael did not need to take a pulmonary function test, and he couldn't understand why the pulmonologist we'd first been referred to would require that before seeing Michael. He reviewed Michael's most recent CT scan taken last month, and determined that now was not a good time to drain any of the fluid in Michael's lungs. However, he did say that the next CT scan may show something different and perhaps draining off the fluid at that point would make sense.

Michael was very happy that the doctor did not require any further tests, and that we were able to get home by lunchtime. Me, too!

Dear Readers,

I think I need to clarify something here based on some of the emails and comments I've received about my last post. Yes, Michael is very sick at this point, but he is still in treatment. There will be no hospice care until/unless treatment is discontinued. Michael has an aversion to hospitals, medicine, and to some extent doctors. So, he has concerns that if he returns to the hospital that his desire to die at home (one day, in the future, hopefully a long time from now) will not be respected. I had to help him understand the role of the hospital versus the role of the hospice care.

I have no reason to think that this week upcoming will be the week in which treatment is discontinued. In fact, I do believe that the pulmonologist will have some ideas as to how best make Michael more comfortable. That is the outcome I am hoping and praying for.

Be that as it may, we have had many discussions about life and death matters. He is in a fight for his life, and he is in the underdog position. But he is not fighting this fight alone. The verse I taught him last week was Philippians 4:13 - I can do all things through Christ who strengthens me. And we are learning more and more about the healing nature of God, and it's powerful and encouraging. Today we talked about casting our doubts aside and putting our complete faith in the Lord for h/His healing. At this point we really have nothing to lose by doing so.

Breathing Matters

Michael's index finger has become infected once again, and so he called his GP yesterday and got an appointment in the afternoon. When he let me know, I was willing to get a sub for the half-day and come home to take him, but my sister was with him and she willing to take him. His mom ended up going with them, too. I had confidence in them to take good care of him.

I told my sister on the phone that she needed to be Michael's advocate, and that I thought the GP needed to know how bad Michael's breathing issues have become. I was hopeful that he could do something for Michael as we have been waiting for two weeks for our insurance company to give us all the referrals we need to see the pulmonologist. Actually, they approved our request to see the pulmonologist, but they denied the doctor's request for several tests he wanted Michael to have before the appointment. I'm sure our insurance company wanted him to see the doctor, then have the tests, then see the doctor again. That's the way they like things to go.

Anyway, his GP said his infected finger is secondary to his breathing issues. But, he did prescribe him some antibiotics for the finger, and referred him to a dermatologist for additional treatment. Then he said that Michael either needed to get an appointment by Monday or Tuesday with a pulmonologist, or he was going to have to go to the ER again where he could have all the tests needed right away and begin treatment. My sister was able to get him an appointment with a pulmonologist at Santa Monica/UCLA Hospital for Monday morning next week. Michael does not want to go back to the hospital again at all, but I have a feeling that on Monday the pulmonologist will send him to the ER so he can have all those tests that day and begin treatment.

I told Michael that he's going to have to go with the flow and that we'll do what the doctor recommends. I thought he had a pretty good experience at the hospital recently, and he definitely benefitted from the treatment he received there. But, he does not want to die in a hospital, and I respect that. I've tried to point out that they (the doctors) don't want him to die in the hospital either. They want to do what they can to improve on his condition, and that if there's nothing they can do for him they will send us home and tell us to contact hospice care. It seems that all the blood draws they did in the hospital were really bothersome to him. That's something he's brought up more than once. After all the needles I endured for IVF, I have little sympathy for that reasoning.

But I do sympathize with what he's going through. He can't really sleep at night because of the way the fluid builds up in his lungs and constricts his breathing. Then he has a coughing fit. It seems like he sleeps for about an hour at a time before he needs to wake up and clear everything out again. So, he makes up for the lost sleep during the day as he sits on the couch and takes cat naps. He's taking one as I type this.

His appetite has been good, but he hasn't been able to put on weight. At least he's maintaining his weight. I don't see how he could lose anymore really. He's just a wisp of a thing now.

We keep waiting for him to turn the corner, gain weight, and get stronger. Thank you for continuing to pray with us for those things and complete healing.

On Needles and Looking Back

After school today I had to stop by the district office to get a TB test. It's something we're required to do every four years. Anyway, one of the teachers ahead of me was complaining about needles, and another teacher replied that she didn't mind them. In fact, she said she was on her way to an acupuncture appointment. The nurse asked her what she was doing acupuncture for, and she said it was for fertility.

That brought back a lot of memories for me, and I found myself missing not only acupuncture sessions, but also our fertility treatments. Not that it's enjoyable to get up at four o'clock in the morning to make an appointment before the sun rises, but rather the excitement of the possibility the whole experience contains.

It was this month last year that we began our IVF cycle. What a difference a year can make. Hopefully this time next year we'll be in a better place.

Meltdown

Last night was really rough for me and I lost it. I haven't cried that hard in I don't know how long. As I mentioned yesterday, I just feel pressed and stressed about so many things at home and at work. I cannot adequately express how trying this month has been for me.

I guess what put me over the edge last night was trying to get Michael settled into bed, and he just couldn't get comfortable. After two hours or more of restlessness and coughing, we both decided that we needed to sleep in separate rooms. That's when I lost it. It just seems so unfair that we can't enjoy the closeness of sleeping in the same bed at the end of the day. Michael rallied his strength to comfort me, and I was able to relax and fall asleep. But when the alarm went off, I did not have it in me to go to work. Instead I arranged for a substitute and went back to sleep.

Once my friend Teresa arrived to care for Michael for the day, I headed off for some pampering. It was very therapeutic, and during my massage I was able to let go of a lot of the tension I was carrying in my body. Unfortunately, I wasn't able to turn off the chatter in my mind. If anyone has the secret to that, please let me know! As the afternoon has worn on, I can feel the stress creeping back into my body. I wish the tranquility of the day spa had followed me home.

Thankfully tomorrow is Friday and we have no plans for the weekend. If someone would like to come be with Michael on Saturday evening or Sunday morning so that I can go to church, give me a call. I haven't been since November and I need to worship and hear the Word. I'm hoping that what the massage did for my body, time in church will do for my emotional state.

It's just a very difficult season of life that I find myself in.

Midweek Blues

I'm just feeling so pressed and stressed this afternoon. Turns out the online "application" I completed at the end of November for Social Security Disability Insurance was not the actual application. No, it was the medical survey. It took me hours and hours to complete during Thanksgiving week. Michael called Social Security again today, and was told they had never received his application. So I did a little research and realized what we needed to do, and then I did it. I think there's more paperwork to submit, but at least we're in the pipeline now.

This sort of thing just makes me crazy. So does looking at all the paperwork I need to sort through to prepare our taxes. Michael's got a banker's box full of 2009 receipts, and I've got an Ann Taylor Loft shopping bag full. Nice...

Anyway, I'm just feeling overwhelmed by stuff like this. I just wish the world would slow down a little bit while I deal with Michael's health, and I'll get back to things like taxes, going to work, pruning my roses, and so on later.

Yesterday Michael received this pillow I ordered for him. He is unable to lay down to sleep anymore because of his acid reflux. The pillow worked out really well - he hardly coughed at all last night - but his tailbone was sore from sitting all night. Thankfully, my mom picked up a special doughnut-shaped cushion for him to sit on tonight. It seems like whenever we solve one problem, another one pops up - kind of like playing Whack-a-Mole.

Michael said the fertility clinic called today to ask if we wanted to keep the swimmers we'd frozen this time last year. I think he would have told them to throw them out, but I wasn't willing to do so. Soon we'll be getting a bill for them to stay in storage another year. I like the idea of having them just in case. I don't allow myself to spend much time thinking about that part of our lives, but I still want to keep our options open.

Sorry to be a complainer. I'm just in a little funk today. It'll pass.

A Good Report

We returned to UCLA today for a check up. First up was blood work in the morning, and then we saw one of Dr. K's colleagues in the afternoon. I don't know why we didn't see Dr. K, but the person we did see is the director of clinical trials for the entire kidney cancer program - she seemed to know what she was talking about. She said all of Michael's blood work looked good, and she was extremely pleased that he has had no side effects from the Afinitor so far. Apparently, many patients have experienced unpleasant side effects due to this medication. We thank God that it hasn't been a problem for Michael so far.

While we were still in the waiting room, Dr. K's assistant came by to ask us if we had any questions she could relay to the doctor on our behalf. We asked if we should be seeing a pulmonologist to manage the issues Michael is experiencing due to the cancer in his lungs. In a few moments she returned with a referral to an "excellent" pulmonologist who "specializes in patients like Michael". Once the referral is approved, she will make an appointment for us. Hopefully we will be able to see him next week. I will have to say that I really like how Dr. K's assistant keeps track of referrals for us, and makes appointments for us. We did not have that kind of care with our previous medical group. No wonder UCLA is so highly regarded.

Michael was blessed to have many friends and family members visit him over the last few days. He really loves seeing old friends, and is overwhelmed by the love that has been shown to him. However, all that visiting really tired him out, and I've had to put a moratorium on visits for a while. We talked about this after he was simply exhausted last night and couldn't stop coughing. As if the coughing isn't hard enough on him, it often leads to a GERD attack which is so awful for him. So for this week, he will not be seeing friends and he will not be taking phone calls either. We have seen how much the cough is aggravated by talking - thus the no visits and no phone calls for the time being. We both agree that Michael just needs to focus on rest and nutrition right now. We encourage friends to shoot him an email or post to his Facebook wall any words of encouragement you may have for him instead. Thank you so much for understanding.

Unless something changes, Michael will return to UCLA in five weeks for another CT scan, and we'll follow up with Dr. K about a week later. We are waiting for and expecting good news. Thank you so much for continuing to pray for Michael's healing.