Saturday, February 23, 2013

Auto Transplant: Day 1

Goals for the day:
- Shave and shower - check
- Get up and go on walks around my unit - two down, one or two to go.
- Reduce or eliminate nausea - Adavan and Compazine are being employed for that.
- Increase my appetite - Merinol is the choice there.
- Decrease water retention - I've been retaining water like crazy since getting here on Tuesday, to the point that I've added about 8 pounds in weight.For now, they've decided to take me off of my "maintenance" saline solution that they have constantly had dripping into me since getting here.
- Bump up my immune system. I've spoken about IVIG in previous posts, and they'll be giving me some of that in the next few minutes.

I'm constantly tired and that's a bummer, cause I don't like to just sit or lay around all day long. But it's expected, because I was just reborn yesterday. I have a great team of doctors, nurses, aides family and friends who will come and lift my spirits and force me out of bed to go on walks and play games, etc. Anyway, they've put some Benadryl in me for my IVIG infusion, and it makes me groggy. I can't think straight, so I'll end this now.

Friday, February 22, 2013

Auto Transplant: Day 0

Happy rebirth-day to me! This morning a little after 11 a.m., I received my first stem cell transplant. I'm exhausted, and the worst is yet to come. I still have to walk a bit into the valley of the shadow of death over the next several days before I can come back to where I want and need to be.

Oh! Yesterday, I received a plant - well, actually a cactus arrangement - from Onset Financial, who has been my employer for the past 13 months. It came with a nice note that says, "We are thinking of you and wishing you the best. - The Onset Financial Family" I thought that was a very nice and unexpected gift. Unfortunately, I can't have plants in my room, but it's at the nurses' station so every time I do laps around East Eight, I see it and am reminded that they care.

Well, that's about it for me for now. Like I said, I'm pretty exhausted. More later.

Thursday, February 21, 2013

Autologous Transplant, Days -3, -2 and -1

The day of my actual transplant (tomorrow) is considered "Day 0" so the three days leading up to it are Days -3, -2 and -1.

Tuesday, February 19: Day -3
I got settled into my room and hung out with Noelle for the day. I took some time getting the staff up to date on the levels of meds I've been taking and the schedule I've been on. For example, I have a medicine I've been taking for my neuropathy that has to be ramped up at the rate of one pill every three days until relief is found. I had gotten up to two in the morning, two in the afternoon and three in the evening. My PA, Dan, explained to me on Tuesday that that medicine works best when all three doses are the same quantity, He has remedied that situation for me. The problem is, they can make you sleepy until your body adjusts to the new dosage. And, he decided to up my dosage by two pills a day right away as opposed to one and then another 3 days later. I've been feeling it today in particular. My chemo began at around 4:00 on Tuesday. It's about a 20 minute IV drip, and it's been found that sucking on ice or popsicles for about 5 minutes before the chemo, all during it, and for about 30 minutes after reduces the chances for GI tract sores, which has been my greatest concern with this chemo. Bad sores in my mouth and throat, stomach, intestines...the whole shebang  The reason the cold stuff can help reduce the chances for sores is because the cold causes the cells in the mouth to close up a bit so the chemo med can't soak into them as much. Anyway, I went through 3 Italian ice cups, 2 popsicles, an ice cream cup and some ice pellets. By the time those 55 minutes were over, I was sick to my stomach with all the sugar and ice, and vowed to come up with a different plan for the following day. Other than that, the day was pretty uneventful.

Wednesday, February 20: Day -2
Hiccups. Lots and lots of hiccups. One of the meds they're giving me is a steroid called Dexamethazone (or "Dex). It was a part of the 4 cycles of chemo I did from October to January, and it almost always gave me hiccups in the evening, after having taken them in the morning. Well, I got the Dex on Tuesday afternoon, and the hiccups began at around 10:20 in the morning on Wednesday. I asked for Baclofen, a pill that has helped to get my hiccups to subside a little in the past. Well, this time it didn't work. Maybe it's because they gave me the Dex in liquid form in stead of the solid form I would take at home. Maybe it was a larger dosage. Maybe it's because it's been a month and a half since I last had any Dex in my system. Whatever the cause, the hiccups stayed with me for 5 or 6 hours! Crazy! That's a record for me. I think the longest bout I've ever had was about an hour, so this was pretty crazy. They ended up giving me a different med for my hiccups called Thorazine (I think). That helped. Also, I met with Dr. Miller Wednesday. He specialized in rehab and has prescribed a new medicine to help me with my neuropathy, in conjunction with the med I've been taking since January. I've already gotten some good results from it, which I'm VERY excited about. Here's hoping it continues to help, because he explained to me that damaged nerves heal at the rate of about one inch per month. Of course, my feet are further away from my spine, which is where the regeneration and healing of the nerves begin. He figures it'll take about 2 years or so for the healing to reach my feet. Like I said, here's hoping the new medicine continues to help. I got more chemo at 4:00, and put down a Jamba Juice Noelle had picked up for me on her way in expressly for that purpose. So, Jamba Juice, one popsicle, and grape juice poured over ice pellets. Still a lot of sugar like the day before, but not as sugary, and still cold enough to help...we hope. A dietitian met with us yesterday as well. She's asked me to consume at least 2200 calories a day with a lot of protein. That's a tall order, when I have a bad sense of taste and not much of an appetite. Also, a bit of nausea set in yesterday, making it all the more difficult to get up the gumption to eat. It settled down, though, and Noelle and I were able to play a game of cribbage before she left for the day. Overall, it was an OK day, untill...

Thursday, February 21: Day -1
After getting to sleep some time around midnight, I woke up at 3:05 and had to pee. They also draw blood for labs every morning between 3 a.m. and 5 a.m. (I know...what an AWFUL time choice, huh?), so I figured that I would call my nurses (one LDSH employee and one nursing student from Utah State University) in to get that taken care of while I was awake. So after peeing, I came beck to lay back down. As soon as I sat down on the edge of my bed, I knew I was in trouble. I went right back to the bathroom and threw up. I hate throwing up...with an absolute passion. Granted, I don't know of anyone who really enjoys it, but I hate, hate, HATE IT! And this was awful. So, I get back to bed and call the nurses' station to let them know I wanted my blood drawn and some anti-nausea medicine that they could shoot into the tube running into my central line. They came, they did what I had requested, and left. I sipped from my water pitcher for a while, and then out of the blue, I felt another wave come over me. I ran the four feet to the bathroom and still made a mess of it...didn't quite get to the toilet in time to keep the floor clean. after I was done, they brought in housekeeping to clean up for me. What a horrible job! I can only imagine the messes they have to clean up around a hospital. This morning, after waking up around 8 a.m., I threw up again. Yes, it was a tough morning. They've loaded me up with a lot of anti-nausea meds today, and I've been able to eat a bit, but not a ton. Noelle and I played Skip-Bo (why the heck would they choose that name for a game? I mean, really, what the heck is "Skip-Bo" even supposed to mean?) I won, not that it matters. We also watched the first three episodes of season 1 of LOST. It's been a long time since we've watched it, so it's good to get to know the characters again. It's definitely one of our all-time favorite shows we've watched together. Mad About You, Chuck and Modern Family are others. Anyway, I'm really tired from the combination of meds they've given me for the nausea, so I'm going to wrap this up. I'm going to try to blog more regularly while I'm here in the hospital, as the days tend to run into each other and the lines get blurred.

Sunday, February 17, 2013

Tandem Transplant

A couple weeks ago, on January 31, Noelle and I met with Dr. Asch, who is one of the doctors in the BMT program. The primary purpose of the meeting (as far as we knew going into it) was to discuss the stem cell collection process. We only discussed that briefly, and then she told us there was something else we needed to talk about. Then she asked if we had ever heard of a "tandem" transplant. Noelle and I had read an article a friend had sent us a few months ago about a man with Plasma Cell Leukemia who had had a tandem transplant, though we couldn't recall all of the particulars about it. We've known all along that I would ultimately need two transplants. The plan has been to go through this first (autologous or "auto") transplant next week, wait until the cancer comes back, and then start the chemo process over again and do the donor (allogeneic or "allo") transplant. Dr. Asch said that for a few key reasons, she and the other doctors on East Eight have decided to recommend that we change the plan and do a tandem transplant. The tandem transplant process is basically doing the two transplants much closer together, and not waiting for the cancer to rear its ugly head again. Ideally, the allo transplant would be done 30 to 60 days after the auto transplant.

Now, as for the reasons they advise this...
  • Waiting for the cancer to come back requires going through some chemotherapy cycles again in preparation for the allo transplant. Every time chemotherapy is introduced to a person's body, the body learns about how that chemo works and has a chance to learn how to resist it's effects on the cancer. That means that going through the chemo process again may or may not be as effective as it was the first time through. On the other hand, with the tandem transplant, the need to go through a cycle or cycles of chemotherapy before the allo transplant is eliminated, and we can go straight into the hospital, have the high-dose chemo to wipe out my marrow and move ahead full-bore.
  • Another big reason to move forward with the allo transplant quickly is that we avoid the need for what is called "maintenance chemotherapy." Maintenance chemo is lower doses of one or more chemo drugs given after recovery from the transplant to help keep the cancer in remission. In my case, the drug used for Multiple Myeloma patients is Velcade. Velcade is the chemo drug that has caused the neuropathy in my feet. My doctors are still hopeful that I will be able to enjoy a full recovery from my neuropathy symptoms over time. On the other hand, those chances decrease dramatically with the administration of any more Velcade.
  • Lastly, my chances for long-term survival increase with the tandem transplant. My cancer is very aggressive and carries with it a very low survival rate. Any increase in survival rate is welcome and adds a measure of hope and comfort.
I do not want to go through chemotherapy again if I can avoid it. I do not want my neuropathy to increase or get to the point of becoming incurable. I do want the best possible chance of adding as many years to my life as possible. The way I look at it is this: I died the day I received my diagnosis. Every day since October 4, 2012 is a day added to my life. Chemotherapy has added these past four and a half months to my life, but without the stem cell transplants, I will die. The auto transplant has the capacity to add a couple years to my life, but not to provide a cure of the cancer. The allo transplant, whether done sooner or later, may kill me, but it's a chance I'm willing to take for the capacity it has to provide a cure of the cancer and add several years, or perhaps even decades to my life. If receiving the auto and allo transplants close together increases my chances of reaching into the realm of decades, then it's worth giving up the possibility of having a year or two of remission with a high quality of life between transplants to get those decades. 

The decision to accept our doctors' recommendation did not come easily. Noelle and I fasted and prayed about it for over a week before feeling the Holy Ghost confirm to our hearts that it's the right thing to do. With the confidence the Lord has given us, we are moving forward in faith on this revised path. Nothing has changed with the course of action for the next several weeks. I'll still be in the hospital for 3 weeks or so, then convalesce at home for several weeks to regain my immune system and my strength. Then, likely in the second half of April, I'll go in for the second transplant. That process will be very similar to this one, with a couple days of chemo to (again) clear out all of my bone marrow, then a day of rest, then the transplant and recovery. There is a big difference in the amount of time required for the recovery, however. I'll probably need 4 to 6 weeks in the hospital, then about a year to recover sufficiently to return to work.

Yes, you read that right. I won't be able to work for the next year or so. This past Thursday, February 14th, was my last day of work for the foreseeable future. Resigning from my job was a difficult thing to do without another job waiting in the wings. I've resigned from other positions before, but it's always been for the sake of a better job. Now it's for the sake of taking care of myself. I've never before made plans to be without an income for a year. Noelle and I are working through things to make that possible. We receive a monthly stipend from Sacramento County for the four children we adopted, but we've never been in a position to have to live off of it. We thank Heaven we have it, of course. But to make things work, we'll have to cut WAY back on our monthly expenses. We paid off Noelle's Suburban with our tax return, so that will save us a good chunk of change on our monthly expenses without that car payment. Also, and this hurt...I sold my car on Friday night. After discussing it together, it made so much sense. I won't need a car for work for at least a year, and I won't really have the strength or energy to drive for the majority of that time anyway. We were only 9 months away from paying it off, but it makes no sense to pay the extra money every month for the car payment for 9 months, and the extra money or car insurance indefinitely. In addition to saving that money every month, the money we earned from the sale of the car will go a long way toward paying off some credit card accounts and eliminating those monthly payments, as well. In all, we've gone a long way this week in preparing ourselves to live without my income. There's more work to be done, but we've made a HUGE dent in our deficit.

So, that's what you need to know for now about the tandem transplant plan. As we get closer to the allo transplant, I'll write more about it, but I've found it's best to just focus on the step immediately in front of me.

Saturday, February 16, 2013

Stem Cell Collection - Part Two

And now, for the exciting conclusion of our story of John's stem cell collection...

Tuesday, February 5
Tuesday morning, I didn't feel right when I got up. Granted, I had to be up by 6:15 to be ready to go when my brother Jeff came to pick me up to go to the hospital at 6:45. He's an attorney downtown, and can benefit from going in early, so he said he'd be willing to take me in for my 7:15 appointments throughout the week until I was done with the collection. That way, Noelle could go through her usual morning routine with the kids, and then come to the hospital after getting them off to school. Anyway, like I said, I didn't feel great. I was only able to get a few bites of cereal down, and the apple juice with which I took my morning pills didn't taste right. Unfortunately, things not tasting right is a side effect I've grown used to over the past four months, but not one I expected to come back three weeks after finishing my last round of chemotherapy. I guess Mozobil can have that effect on patients, too.

I got to the BMT clinic at the hospital and had labs drawn, then went down to what I call "the Red Cross Collection Room." The Red Cross actually oversees the collection, storage and transfusion of whole and part blood products for LDS Hospital. We had to wait about 1/2 an hour or so before we could get going on the collection. There's some number they look at in a person's blood work to determine to what degree stem cells are circulating in the blood stream, and therefore, their readiness to have stem cells collected. Whatever the number empirically represents, they want it above 10, as a minimum. The reason they collected my stem cells on Monday is because that number was at 117. On Tuesday, I was at 248. They hooked me up and set right to work on cycling through 20 liters of blood. When Noelle got there, she brought snacks and DVDs of the 3rd season of Modern Family.

Things went along OK, aside from the fact that I felt nauseous and I wasn't able to produce any saliva. Consequently, when I tried a Ritz cracker from Noelle's stash of snacks, it was like ash in my mouth. I was able to drink a little, but I remained parched. Noelle hung out with me until she had to go early in the afternoon to be with our sickies. A couple of our kids were sick and had been taken care of by a friend, but she had somewhere she had to go in the afternoon. A short time after Noelle left, I threw up. The all-day nausea had reached its climax and I was done. About 1/2 an hour later, we finished with the collection with a whopping 16 million stem cells to add to the 5 million I produced on Monday. I'm now known as Superman around East Eight. It's not quite a two-day record, but very, very close. =0) After I was done, I hung out and waited for Noelle to return to take me home. That afternoon and evening, I couldn't find the gumption to eat anything. I still felt nauseous, nothing sounded good to me, and I was absolutely wiped out physically.

Wednesday, February 6 - Friday, February 8
The next few days were rough. To start with, I had a horrible time eating, which led to tremendous lethargy and frustration. I tried so many things, and everything tasted awful and made me feel nauseous. Sometimes, just the suggestion of a particular food made me feel like throwing up. Foods I typically love were some of my least favorite things to even think about. I was able to choke down some noodles a couple times, but if they were seasoned too much they made me sick. It was really hard on Noelle to see me have such a difficult time eating. I'm the guy who has a history of having difficulty knowing when to STOP eating. I had a marathon dentist appointment on Thursday afternoon to take care of some dental work that my doctors said HAD to be done before the transplant. When I got home from that, I saw my family sitting down to a dinner of shepherd's pie that someone from church had brought for us. It looked so good. I actually ate a small serving of it, and I didn't feel like puking. It was amazing. Noelle started to cry and told me she had prayed that I would be able to eat it. Unfortunately, later that night I was hungry, but nothing - and I mean NOTHING - sounded good to me. By Friday, I was beginning to really worry that I would never feel like eating again. I forced down some spaghetti noodles with salt, pepper and parmesan cheese, but didn't enjoy it at all and couldn't finish the small portion I had prepared for myself. Friday night, I was really concerned about regaining my strength in time to return to work by Monday. Before going to bed, I had a very serious talk with my Father in Heaven. I was worried. On Tuesday, I had thrown up the little bit that I had eaten that morning, and since then had consumed only 1000 calories or so. Noelle thinks It might be as much as 2000 calories, but I think that's a bit high. Anyway, I told my Father that I really, really needed His help to be able to start eating again.

Saturday and Sunday, February 9 - 10
I began to feel a little better and was able to force myself to eat a few times on Saturday without feeling nauseous. My energy began to return, but I was still quite far from feeling anything close to "normal." Sunday was even better, and my appetite had actually returned, though my ability to find things I liked was still a little lacking. before going off to church, Noelle put a few big potatoes in the oven, and when they were finally done around 11:15 or so, I ate one and actually enjoyed my food. What a welcome change! That said, however, I knew I had a long way to go to regain my energy. Finally, though, my worries about whether or not I'd be able to return to work on Monday had subsided. I was going, whether my body felt like it or not.

Saturday, February 9, 2013

Stem Cell Collection - Part One

So, in order for a blood and marrow cancer patient to have a stem cell transplant, the stem cells have to be collected from the patient or from someone else. In the case of an autologous transplant, they're collected from the patient (see me raising my hand for the purpose of identification). While only 3 to 5 million stem cells are required for the transplant, my doctors wanted to play it safe and collect between 10 and 15 million cells, enough for a few autologous transplants. In order to be fully prepared for the transplant and all that goes with it and follows it, the patient also needs to have a "central line" put into his or her chest. So, here's what the past week has been like for me...

Friday, February 1
At about 8:00 a.m., I got out of the shower and felt a mild twinge of pain in my lower back. It lasted about 5 or 10 seconds then went away. I said something like, "What the heck?", and then I forgot about it.

At 9:00 a.m., I received my first injections of Neupogen, a drug designed to cause the stem cells in a person's body to proliferate, or reproduce faster than normal. The most common side effects are mild flu-like symptoms and bone pain. The bone pain is caused by the marrow in the bones working extra hard to produce the extra stem cells.

During my day at work, my lower back pain came and went, but every time it came, it lasted longer and became more severe. I tried to stretch it out, as one would typically do with back pain, but it didn't help. By the time I got home, the back pain was almost unbearable, and there was nothing Noelle or I could do to determine its cause or find a position for my body that relieved it. While it continued to come and go, additional pain began in my sternum. I called and spoke with the charge nurse at the hospital, and we determined that with the pain beginning before even starting the Neupogen that morning, the two were not related. She told me that if the pain was still there in the morning, I should come in to see if we could determine its cause and find a good treatment for it.

Saturday, February 2
After a fitful night of "sleep," I gave up on the idea at about 6:30 a.m. I called the BMT Clinic around 8:00 and was given an appointment at 10:30. By this point, the bone pain from the Neupogen had begun in my pelvis and hips, adding to the discomfort in my back and sternum. In order to give Shar, the PA we met with, as accurate a description of the pain and its whereabouts, I didn't take any Oxycodone or any other pain killer that morning, though I really, really wanted to. Unfortunately, Shar couldn't figure out the cause of the pain in my back, though she did let me know that the pain in my sternum was related to the Neupogen, and not to the back pain. After three hours of attempting to figure out what was giving me the back pain with blood work, tests and medication, Shar ultimately gave up and prescribed a stronger pain med (Oxycontin) than the Oxycodone I had and said it should help with my back pain as well as the bone pain from the Neupogen. The Oxycontin helped a lot and by Sunday the mysterious back pain went away and I was left only with the bone pain from the Neupogen.

Sunday, February 3
Bone pain, bone pain, bone pain. I walked around like an old man on Sunday, as I was really feeling it in my hips. Although they made the second half interesting, my 49ers lost the Super Bowl to the Ravens, who looked like the team of destiny all through the playoffs. That's about all I have to say about Sunday.

Monday, February 4
Monday was the day to remove the "peripheral" or "PICC" line from my arm and replace it with the central line in my chest. I came to the hospital at 7:15, having not eaten since Sunday evening, as they had requested that I come fasting since midnight with the exception of water to take my pills. No problem. The surgery was scheduled for 8 a.m., and would only last about 30 to 45 minutes under conscious sedation. Then after a little time in recovery, I should be able to eat and go home. After drawing some blood work on East Eight, Noelle and I went down to the Angio Prep/Recovery room. My surgery was delayed for about 3 hours because there was an emergency with another patient that took doctors away from my unit, as I understand. I hope that whoever it was is OK and recovering well.

Here's a picture of me waiting to go in for my surgery.


So, finally, a few minutes before 11:00, I was finally taken into the operating room, given some "happy juice" through my PICC line and the next thing I knew, the operation was over, and they were pulling the PICC line out of my arm and dropping it in a trash can. When I got into recovery, Noelle told me that East Eight called down and said that my labs came back and my numbers looked so good that they wanted to begin stem cell collection that day...as soon as we could get back up to the BMT Clinic.

So, up we go to get me hooked up to the apheresis machine. For about three hours, blood flowed out of my body and into the machine. It spun and separated my blood, pulled out the stem cells, and then returned the rest of my blood to my body. We cycled through 15 liters of my blood in those three hours, hoping to get a few million stem cells out of it. That would get us off to a good start before even receiving my first injection of Mozobil, which is the drug designed to cause the newly generated stem cells to be released from my marrow into my blood stream. Well, obviously the Neupogen had caused so many stem cells to be generated that a lot had already released into my blood stream with nowhere left to go inside the bones, as indicated by the 5.04 million stem cells we ended up collecting on Monday. It took a while for the count to come back from the Red Cross labs, and we had to wait for the number before I received my Mozobil injection. Obviously, if we had somehow collected over 10 million stem cells Monday, I wouldn't need the injection. Though it was a long shot, we had to wait. Then after receiving my shot, they still had to "observe" me for 1/2 an hour to ensure I didn't have an adverse reaction to it. I finally left the hospital around 9:15 p.m., 14 hours after getting there and 10 hours before I had to be back in the morning.

Stay tuned for the exciting conclusion of the story. (That means this post is long enough already and I'm too tired to write any more.)