Day 72

My last post was titled day 67, but I wrote it on day 69. I don't know what was wrong with me.

Lots of news on Day 72, though!

Off the Foscarnet

Top of the list is no Foscarnet today! That's the med that's been bringing me in every day and sometimes twice a day for three or four weeks. It also wipes out my electrolytes, resulting in one to two hours of magnesium infusions almost every day. The CMV level, which is the virus the Foscarnet was treating, was under 200 yesterday, which is considered completely negative. (Apparently, it's impossible to completely eradicate.)

The big news there is that hopefully means I won't be coming into the clinic every day. By now (day 72), they like to have transplant patients coming in 2 or 3 times per week. They've tried with me several times, but something has always come up. I have an antibiotic to receive by IV tomorrow, but it's possible that I won't have to come into the clinic at all this weekend ... Lord willing.

Jerry

Let's see. Jerry, my leukemia buddy, who originally came in the hospital two days before me back in July, got sent home for four weeks! He was thrilled.

Jerry made it over 90 days after transplant without any time in the hospital. Even his transplant was outpatient. Then he got a terrible lung problem that they determined last week was a blood clot. They're treating it with blood thinners, which must be working if they're letting him stay in Grundy, VA, some seven hours from Vanderbilt for four weeks.

I mentioned to a couple of the nurses that know both him and me that he'd had the blood clot in his lung, and their eyes widened noticeably. I could tell that one of them wanted to ask, "Is he still alive?"

We had Jerry over for dinner the other night, and we talked about those things. The doctor said that had that clot hit the stents in his heart rather than the vein in his lung, he would have had a massive heart attack, and there would have been no recovering.

Every day we find reason to give thanks to God for answers to prayer. Last week when Jerry drove 7 hours to come to an appointment, he got here and none of the discounted rooms for cancer patients were available. He ended up at a hotel for over $100. We prayed that there would be something this week, and they got a room that is normally never available during the week, only on weekends.

Floaties and Flashes of Light

A few days ago I got up in the morning, and I noticed that I had a number of "floaties," those things that a lot of us can see in our eye on and off throughout our lives.

These floaties were solid, though, not stringy or cloudy, and there were about ten of them, all in my right eye. When I moved my eyes from right to left or left to right, it looked like a bunch of little bugs were running across the floor at my feet.

The next day, there were more, and the ones from the day before and dissolved a little so that they were no longer so solid. Also, overnight I'd been seeing flashes of light in the peripheral vision of my right eye.

I told the nurse about it on Friday, six days ago, and they said they'd try to get me an appointment with an ophthalmologist. She said all transplant patients see the eye doctor sooner or later, but it sounded like my visit needed to be sooner.

On Saturday, I got up and could see a plume of blood in the peripheral vision of my right eye. It was much bigger than any of the floaties. Over the day, it detached, and it became a big floatie, covering about a third of the total vision area of my right eye. It was not opaque, but it was not very clear, either. It moved around, and when it blocked the vision of my right eye—which was pretty often because this was a huge floatie—it made things very shadowy.

I was also still seeing the flashes of light in my peripheral vision at night, maybe a dozen times a night.

When I told the doctor on Monday, he said he'd try to get me an appointment with the eye doctor this week. It appears to me, however, that when he reached the ophthalmologist, the eye doctor told him I needed an emergency visit, not an appointment. They ended up rushing me from Photopheresis, which ended about 3:30 pm to see the ophthalmologist before 4.

To make a long story short, they knew exactly what it was and exactly what they were looking for. We have a gel in our eyes called the "vitreous humor." It fills the space between our retina and the lens of our eyes. As we get older, it hardens, and it can pull away from the retina. In fact, it happens to everyone if they live long enough, usually between the ages of 50 and 80.

So there was nothing abnormal about what was happening to me. It was pure chance, they said, that the separation of my vitreous happened during the transplant process.

On the other hand, the separation can tear the retina or cause it to separate, and that is why they wanted to see me immediately. They looked down in my eyeball in a dark room, pulling my eyelid out of the way with a tool that looked like a crochet needle. It was somewhat torturous. Between the bright light shining in my eye, and the crochet needle pulling my eyelid around, I couldn't decide what was painful and what was just blinding. At one point, the doctor told me to look up, but my eye was so traumatized I could barely think straight, much less look anywhere. I started laughing, and it took a couple seconds to stop. I apologized, and he went back to staring in my eye.

The end of all that, though, was that my retina is not torn or separated. Everything's just fine, but the process isn't over. He said I'll be seeing the light flashes for a while, which happen as the Vitreous continues to pull away from the retina.

They'll check my retina again in a month just to make sure everything's okay, and then that will be the end of that.

Cardiac Checkup

I went back to the cardiac doctor yesterday. They looked at my last few EKG's, which the stem cell clinic orders regularly for various reasons, and he decided that everything's fine with my heart. They want one last echocardiogram, and if it shows my heart is strong, then there will be no follow-up. I'll just be done with cardiac visits.

Very nice. The echo is tomorrow afternoon.

Richard and Nicola in South Africa

I've asked for prayer before for Richard in South Africa. He is on day 15 of his transplant, and they're sending him home from the hospital. The note I got said that he's had very little side effects so far, and his counts are already coming up. This is really good, as he got a very strong conditioning regimen that even included radiation.

Like every other person in their situation, they have to guard against infection and graft-vs-host disease. They're one more answer to prayer. Please keep praying for them.

It's really encouraging to see them doing so well!

Day 67

My trip through the 100 days post-transplant has involved a lot of clinic time, and it appears it still will.

They're checking my CMV level today, but they told me that if it's under 200, which is what they want, they still want to give me Foscarnet every day for two weeks. This is my second CMV flare-up, so they don't want to take any chances.

By Brendan Fagan, spotted in Selmer, TN

So my clinic visits will continue to be daily, even on weekends, until day 81 or so ... assuming that my CMV level has dropped from 280 or so last week to under 200 this week. Otherwise, even longer.

Better safe than sorry, they say. I happen to agree with that.

On the other hand, my blood counts have been awesome. My red blood cell level, which on a normal person is about 45%, has been at 35 or 36% for four straight days. It hasn't been over 32% since the transplant, so that's a great sign that the red blood cells are kicking in. My platelets are up just a bit at 70, and my white blood cell counts continue to sit in a decent normal range.

Blood system's working! Now we just have to teach it to attack viruses like CMV rather than body parts like my skin and GI tract.

It seems a little like breaking a horse.

Thank you to everyone for the encouraging words from day 65.

I got a note from my friend Richard in South Africa who was on day 11 of his transplant, and he already had a 2.1 white blood cell count. He got adult bone marrow for his transplant, so his count recovery will be faster than mine. I'm excited for him, as he's handling these first few days really well. Please feel free to pray for him. The road in front of him is completely unpredictable, other than that he's going into it with a great attitude, which is the best weapon of all.

It feels neat to be part of this community of people going through bone marrow/stem cell transplant (see tab at top if you don't know what that is). Michael in Ireland sends me advice or encouraging notes almost every day. I dream of getting to go visit him and his family after this is all over.

There's several others. Tamara just gave us an update (see "Our Journey" in my bloglist) and there are a couple other blood cancer blogs. I'm scared to mention any others, lest I leave only a couple unmentioned and offend someone.

It's like a whole separate world that I spend a lot of my time in, then emerge to interact with my old world, old friends, and business needs that press at me here and there. My son's getting married April 29, and I've been promised freedom from the clinic for that, but my daily visits have been extended into April already. So, I have just the slightest worry, but they've assured me they'll set me free for the wedding and the prep for it.

Day 65

I haven't been blogging much because my blogs seem boring. I'm in a place of gradual recovery, but I'll give you an update on how things are going.

My platelets are finally going up regularly. They were 65 today, and they've been steadily rising for a week. Platelets are the cells that let your blood clot, and 135 is the bottom of normal. Under 30 or under 20 can cause some real problems with bleeding, and chemo and transplant patients hover around that level, being infused with platelets every couple days, until counts start recovering. 65 is nowhere near normal, but it does allow blood to clot so you don't have to worry about bleeding or bruising quite so much.

I'm still coming in every day to get Foscarnate, which is a medicine to control CMV, a virus that about 70% of the population has. In most people it just sits dormant, but it can be life-threatening in an immuno-compromised patient. I've been getting the Foscarnate for about two weeks, and my CMV levels have dropped from over 2000 to just over 200. That's a good thing.

My other blood counts have been encouraging, too. My white blood cell counts (that's all the immune system cells) and neutrophil counts(that's only those that fight bacteria) have been steady in the normal range without any booster shots, such as Neupogen.

I've found out that the reason I'm on Photopheresis, where they pull blood from my body, separate the T-cells, and shine UV light through them, is because I had graft-vs-host disease both in my skin and in my gut. They treat GVHD not only with medicines that suppress the immune system, but also with steroids. Steroids have a bunch of side effects, though, and the Photopheresis is an attempt to get me off steroids.

We're weaning off the steroids I'm taking now, and so far, so good. No rashes, and my appetite and taste for foods are increasing, not decreasing. It will take another two weeks at least to wean all the way off the steroids, so we're only about halfway there, but the Photopheresis seems to be working.

In the meantime, I'm not sure if I've mentioned that my son is getting married April 29, but the doctor and the nurses have promised that it will be no problem to get a few days away from the clinic to prepare for and attend that wedding. We're very excited.

My son Noah and his fiance, Dassi

Oh, exercise. I lost a lot of weight in the hospital when I wasn't eating, and a lot of it was muscle weight. I got very weak and looking in the mirror is frightening. Being bald and skinny, I look like I'm from a refugee camp.

The weakness means that exercise is easy, though. A half-mile walk is a long walk, and for upper body exercise, I have a stretch band. The stretch band is nice, as I can roll it up when I want a lot of resistance, or let it out when I just want to move my joints a bit.

It's all working. I'm walking a flight of stairs by our apartment on a repeated basis, and my legs don't wobble near so much as they did. I can even run a few stairs! Yesterday, I managed to get myself in a pushup position, though I could only go down about three inches. So I went down three inches as many times as I could. I am intent on getting some of my muscle mass back and looking somewhat normal.

In this state, you realize how much daily life is exercise. When I get up in the morning, if I shower, make my own breakfast, take my pills, and gather my things, I'm on my feet for 45 minutes straight. It's all walking and moving, so I can feel it in my legs and body, and I usually have to sit for 10 minutes or so before I'm ready to leave the house.

And that, of course, is happening every morning because of the Foscarnate. Normally, I would be coming to the clinic two or three times a week, but I have to come every day to get that Foscarnate infusion. I think there's about one more week of that, though the following week I have other appointments with cardiac doctors and such like.

Despite the daily trips to the clinic, I feel the fact that life is heading towards a new normal. I have some responsibilities, keeping up on the blogs, and especially on the Through the Bible blog. I've got tax issues to help others with back at the business at home, which I can only do by email and phone. Taxes are no fun, but it does feel like I'm back to life rather than laying in a bed without the energy to do anything at all.

Day 60

Well, the last couple days finally showed some improvement in my platelets. They jumped from 32 to 40 on Thursday and then from 40 to 47 on Friday. That's an excellent sign that my bone marrow is settling in.

Spring is starting to settle in!

Unfortunately, today is Saturday, so they didn't do a Complete Blood Count today, so I don't get to see if my platelets jumped a third day in a row. (My white blood cell counts have been staying constant in the low normal range, so once my red blood cell counts start rising, everything will have settled in.)

I'm in again getting Foscarnate, the drug that treats the CMV, a virus that many of us have but only those of us with suppressed immune systems have to worry about. I was getting Foscarnate twice a day until Wednesday, but now it's just once. Of course, that means I'll be here on Saturday and Sunday morning as well as weekdays for two more weeks.

Fortunately, though, the last test says that the Foscarnate has knocked the CMV level from over 2,000 to just over 500. That's a good thing, as CMV is real dangerous if it gets out of control.

Thursday and Friday I also had to do the Photopheresis, which I've already described. It takes about four hours, so I was here all afternoon. I'll do that again Monday and Tuesday afternoon. Then Wednesday through Friday I just have Foscarnate and labs in the morning, so those should be shorter days.

The doctors continue to be real pleased with my progress, but they've been also letting on more and more how concerned they were while I was in the hospital. Apparently, I was more sick than I realized, and the doctors were more concerned than they let on.

We made it to a Bible study last night, which was my first time of really being out in public. I got permission from the nurse practitioner before I went. Not only was it great to be "in fellowship" again, but I got to meet another guy who just got out of the hospital. He used to play for the Pittsburgh Steelers, in the 70's for a couple years, but a couple months ago he had open heart surgery.

Everyone wanted to pray for him and for me, of course. Afterward, I explained to them that praying for patients like us should primarily focus on being able to handle the medication and treatment we're getting. We're already healed from the diseases we've had, but the treatments, and especially the medications, can make life rough afterward.

So I thought I'd pass that on to you, too.

Christian Cancer Blogs

I got an email today from a lady who had Non-Hodgkins Lymphoma, but has been cancer-free since 2009. She told me that she's been using her blog as a sort of center for Christian cancer blogs.

I think a lot of us have been doing that, and if her March 7 post is any indication, then Cyndi's blog is an excellent one.

Day 55

We've had a BUSY last few days. The weekend wasn't too bad, fortunately, but Thursday and Friday were real doozies.

I didn't know where to put this. There is an excellent blog about a little girl with leukemia here. Today's is a tear jerker. It's on my blog list now, too, so you can keep up with it.

On both days, we went in at 7:30 a.m. to get Foscarnate. Once they'd given me the Foscarnate and whatever else I needed—usually Magnesium—we went over to the Photopheresis room for a 4-hour treatment. There, a machine separated my blood into red cells, white cells, and platelets, then exposed the white cells to ultraviolet light to damage the T-cells. Apparently, the T-cells are the cells causing Graft-vs-Host disease.

UV protective glasses are required for 24 hours after Photopheresis treatment

But the treatment doesn't simply destroy the T-cells. They put a medicine in the white blood cells, and when the T-cells go back in the body, they die in such a way—called apoptasis—that they announce to the body that they're supposed to be dying. Anyway, all of this, explained the doctor, helps prevent Graft-vs-Host disease without affecting immune function as much as other treatments do.

Photopheresis is still an experimental treatment, and doctors don't fully understand why it works, but studies show that it does, which is what's important.

Enjoying the glasses

After the 4 hours of Photopheresis, we then wandered over to a different section of the hospital to receive an evening dose of Foscarnate, which takes another 3 hours or so.

The end result was that on Thursday we were at the hospital from 7:30 a.m. to 11:30 p.m. with a break of about two hours around suppertime. Friday we stayed straight through from morning to about 8:30 at night.

Very tiring.

The Photopheresis machine

This week I have three more evening treatments of Foscarnate, so I'll go back tonight, Tuesday evening and Wednesday evening. Thursday and Friday I'll get two more afternoon Photopheresis treatments, but there's no evening Foscarnate infusions. I'll only be getting the Foscarnate once a day in the mornings.

This morning was fun, though. Jerry was in the stem cell clinic to have his blood checked, and it turned out he needed magnesium. We wound up in rooms right next to each other, so I pulled a chair up at his door, letting my IV line run back to my room, and we visited most of the time we were there.

They finally seem to have his lung problems cleared up, though now they say he has a blood clot that needs to be cleared up by some blood-thinning medication. His medication seems pretty awful. It's injected in his belly each day, and every shot leaves a small bruise.

Still, the doctors seem to believe Jerry's well enough that they're going to let him go back home to Virginia for a week. His wife is administering the shots for his blood clot.

Finally, we were very encouraged when the doctor came in today. He commented on how well I was doing after everything I've been through, and he seemed genuinely excited that I've come through all this so healthy. It was a little surprising to hear, but very encouraging.

Oh, for those who are coming along behind, it's 55 days, about 8 weeks, since my transplant, and my white blood cell counts are in the normal range and they seem to be stabilized there without my having to get Neupogen shots to keep them there. My red blood cell counts have sat stable at a really low amount for a long time, and they seem to still be there. Today was the first time that my platelets have gone up on their own, but they didn't go up very much. The count is 38, and normal is 150 or higher.

Day 49-50: Change

Today was supposed to be a day off. So far, since I've gotten out of the hospital, we've managed to maintain a Monday-Wednesday-Friday schedule at the Stem Cell Transplant Clinic. I go in, they check all my blood counts, and then they give me various infusions, depending on what I need.

Several things, however, have come up ... well, two mostly.

The first issue was a rash that seemed to sprout immediately over my back and chest Friday. It then spread to my arms and legs over the weekend.

On Friday, they gave me a steroid cream that has been treating the rash quite effectively.

On Monday (yesterday), when we went back in for our scheduled appointment. The doctor talked to me very briefly about the rash, and then told us about a treatment called Photopheresis.

He didn't stay very long, and it seemed clear to me he'd already talked about my case. There are a team of doctors that handle the transplant patients. One in particular might be assigned to each patient, but the whole team talks about each patient's issues. Photopheresis was something that was already on the doctor's mind. He told us he was thinking about it, and he'd get back to us. Then he left, and we could hear him go directly to the phone to continue talking about it.

We went home, expecting to hear more on Wednesday morning because we haven't been going in on Tuesdays.

They called us in this morning, however, to tell us that my "CMV"e; count is over 2,000. CMV is a virus that about 70% of us have, but it causes no problems unless your immune system becomes compromised. At that point, the CMV can cause some nasty problems, including pneumonia, and is a potential killer. When it jumps over 1,000, then it's time to get some help.

They have several treatments for it, all very successful. For me, they opted for a medicine called Foscarnate. I have to get an infusion of it twice a day for a week before they can back it off to once per day and re-evaluate.

That means today is not off ... not at all. It starts with a 9:30 am trip to the hospital for the first dose and a 9 pm trip for the second dose ...

Jump to the next day. It's now Day 50, The halfway point to the 100-day post transplant treatment. Normally, 100-days means that we can go all the way back home to wherever we're from, and we simply show back up in Nashville every 6 weeks or 3 months for checkups.

Clearly, though, it doesn't always work that way. Jerry picked up pneumonia or a respiratory virus of some sort. He's on day 98, I believe, and he's in the hospital having his lungs treated.

It's good to stay well, so I'm sticking to what they tell me to do.

Day 50

I went in this morning, day 50, a Wednesday, after getting those first two Foscarnate dosages yesterday. I couldn't believe how tired I was, and I went right to sleep while they set up the Foscarnate dosages.

By this morning I'd also found out that the Photopheresis is approved.

Step one for Photopheresis would be removing my PICC line, with its three very narrow ports in my arm and replacing it with another Hickman Catheter, a line in my chest and neck with much larger ports to access my bloodstream. They scheduled the installation of the Hickman at noon today, which is very minor surgery, but minor surgery nonetheless.

The PICC line can have three lumens, but the vein in the arm is smaller, so each lumen is connected to  smaller line than on the hickman:

Here's the Hickman. It attaches to large veins in the neck and chest, so all three lines deliver blood better than the PICC line.

Photopheresis

Photopheresis begins tomorrow. It's done on a dialysis machine. They hook the machine up to one of the "lumens" on my Hickman Catheter and pull blood out.

Somehow, the machine divides the blood into three sections, and the section with the white blood cells, along with some medicine, is run through ultraviolet light (UV radiation, like from the son). The UV radiation kills the T-cells, which are apparently the cells that cause Graft-vs.-Disease. They then return the whole mass of blood to my body through one of the other lumens.

How many times they have to do this for each treatment is based on my size and some other factors.

Like all of these treatments, it can cause side effects. The medicine they put in the white blood cell portion to help make the UV radiation work right apparently stays in the blood. So after each treatment, for 24 hours, I have to wear wraparound glasses keeping all UV light away from my eyes.

Like I said, this treatment will happen twice a week and last about 4 hours each, along with the twice a day infusions of foscarnate and whatever other things I might need to be given, like magnesium, phosphorus, Neupogen, my daily dose of Micofungen, and any platelets or blood I might be needed.

It will be a very busy next few weeks.

I'll keep you updated.

To My Friends

Tamara and Richard, great strength to you as you head down your very similar paths.

I may be repeating this, but I recently read that if God gives you a tough road, he'll give you big boots to walk it with. That means a lot to me since it was Corrie Ten Boom who said it, and her rough road included a Nazi concentration camp.

We're going to make it, grace will be sufficient, and we can go through this with cheer and with friendship with those health care workers that are pouring out all their effort on us. We can win!