Thursday, February 26, 2009

Day 30 - The End of the Month

Can you believe that it has been a month since Tyler's transplant? It's gone very quickly from my perspective, but I imagine that Tyler wouldn't exactly agree. It's good to see him starting back towards some of his regular activities though. Andrea says that it gave his nurse heart palpitations when he mentioned that he was golfing again. Thank goodness we had cleared it with the doctors last week! As long as he takes no more than a half swing and avoids grass, dirt, and people, he should be fine.

Today was our last visit with Peter Johnson though. He's been Tyler's provider the majority of the time since October and has done a fabulous job of caring for Ty. When we started with SCCA, we were a little disappointed when the provider would rotate off every month. Peter was Tyler's 3rd provider during our initial visits. But during the time we were at UWMC last fall, he rotated to inpatient care for a month and then rotated back to the outpatient clinic for December through February. It felt like he really made the time to listen to our concerns and experiences and that made me feel more confident in the care that was provided. One of the other providers we had in the clinic always seemed like they had to be somewhere else, which was exceedingly frustrating. I know the doctors have lots to do and many things on their mind, but still want the focus to be on Tyler during the times we meet with them.

Anyways... I'm not sure who our new provider will be, but I do know that Peter will be missed. Many thanks for getting us to our transplant!

Test Results from today are:

WBC: 3.36
HCT: 30
ANC: 2.41
PLT: 71

Wednesday, February 25, 2009

Day 29 - Quick Note

Today was the 1st post transplant bone marrow aspiration and it went really well. I actually took several photos today and hope to share those. However, I forgot my real camera and only took the pictures on my camera. But they were really interesting and show a little bit of what happens and the staff there let me ask a bunch of questions about the process. Even though I've seen several aspirations, I learned a bunch.

Now comes the hard part as we wait for results. We are nervous that there might be some leukemia out there swimming around, but I really hope not!

Lab Results today were:

WBC: 2.77 (normal is 4.3-10)
HCT: 30% (normal is 38-50)
ANC: 1.96 (normal is 1.8-7.0)
PLT: 69 (normal is 150-400)

Monday, February 23, 2009

Anniversaries both Glad and Sad

This is our week of anniversaries... Tuesday is our 2nd wedding anniversary and, while we aren't planning a huge celebration, I must admit to being incredibly thankful to have Tyler in my life. Even as he battles his own cancer, he is thoughtful and loving to others around him. At our rehearsal dinner, I toasted him saying that I knew he was the man for me when I realized that he had no "but". With previous relationships, I had said things like "he's a great guy, but..." With Tyler, I never had to make a statement like that. I'm extremely proud of the man I call husband!

A sadder date for us, February 19th was the 2nd anniversary of Tyler's cancer diagnosis. I'd thought about both anniversaries as the days approached, but then got so busy that his cancerversary actually slipped my mind. That's a good thing, right?

Learning that Tyler had cancer 5 days before the wedding certainly has colored much of our marriage, but I think it has also enriched it in many ways. We were aware from the very start that our time together was precious and that our partnership was truly going to be "for better or for worse". While we had laid a lot of groundwork for this in the years before, I believe that we cemented at our relationship on the day of diagnosis and not at our actual wedding ceremony.

Andrea (Tyler's mother) says that she'll make us an anniversary dinner, so I'm looking forward to a lovely evening at home tomorrow night.

May you be as blessed in love as we are!

Day 27 - Seeing a Golfing Theme

Tyler's father, Scott, chauffered Tyler around today to blood draw and some more golf.

First, the test results from today:

WBC: 2.38
HCT: 29
ANC: 1.6
PLT: 64

They tested the level of tacrolimus in his blood and determined that it was a little bit higher than desired, so they have lowered his dosage for the next few days. He'll have another level taken with the Thursday morning blood draw.

According to Tyler, he and Scott and Gump (Tyler's brother) had to squeeze a little bit of golfing in today as they were all in the same neighborhood at once. They headed to the Pitch and Putt at 128th and played through that course. It sounds like Tyler enjoyed himself, although I imagine he will be pretty sore tomorrow after all of that exercise. I haven't heard how each member of the trio did, but I imagine they were all enjoying the outing. They've had some great times golfing all over the state.

Sunday, February 22, 2009

Day 26 - A Day of Rest

Tyler and I had a pretty low key weekend, which was much needed after the craziness of the last week. Tyler's aunt, Libby, came up for a few hours on Saturday to get a putting lesson from Tyler. It sounds like she picked up a few tips, so I think they are both hoping to get out golfing again soon.

My parents also stopped by (and brought homemade Won Ton soup from my sister) to say "hi" on Saturday evening. My mom's family is planning a week long getaway in August, so we had some fun talking about the golf that the guys planned while in Chelan. I think my father is secretly delighted that Tyler loves to play so much golf. I'm hoping that they can both get over to the golfing place that Tyler found on 128th soon.

I have another busy week at work, so I'll be gone from Tyler for much of the time. But the good news is that my software conversion is going REALLY well and I haven't forgotten everything I'd learned about the software. ;)

As for the week ahead, Tyler has an important bone marrow aspiration and biopsy coming up this week. This test (scheduled for Wednesday) will help measure the success of the transplant. Tyler asked the doctors about when he can say that he is "in remission" and they told him that his bone marrow test would be an important part of that. The goal is for them to see absolutely NO signs of leukemia in his marrow. We likely won't know the results right away, but will be anxiously awaiting the news anyways.

They actually had Tyler start back on his Tasigna last week to make sure that any remaining leukemia in his body will be controlled until the new immune system is fully functional (for about the first year). After that year passes, I'm hopeful that Tyler might get to move off the Tasigna again and have a more normal (translation: less pill intensive) life!

Other than that, Tyler also has his regular blood draws Monday and Thursday and clinic visits on Thursday. Scott (Tyler's dad) is coming to take Tyler to his Monday appointments, so those two will probably go crazy talking sports all day long.

Thursday, February 19, 2009

Day 23 - Putt'ering Around

We are pleased to report a huge success today! Tyler found a nearby location to refresh his putting skills, although I missed that fun myself. I know he was dying to get back on a golf course, so this was a perfect solution for the time until he can be exposed to the grass and dirt of a real golf course. By the way, if you know of a golf course that is exclusively astroturf, we'd like to hear about it!

He had a great night of sleep last night, thanks to some light exercise yesterday. I think that might have been part of the motivation for today's golf outing. He and his mom spent an hour tapping golf balls around, while I was suffering through a hard day at work. ;)

I did, however, get to join Tyler at the doctor's office before going to work. The nutritionist was VERY impressed with Tyler's ability to eat, so she encouraged him to start trying a larger variety of food this week. He really wants fish, which isn't something that I know how to cook, so we've begged his mom to make some seafood on the days that she is here. The goal is to find some succulent and moist and tasty fish for Tyler to enjoy.

Test Results -

WBC: 2.6
HCT: 28%
ANC: 1.63
PLT: 35

He's doing GREAT all around with his recovery. While it is very frustrating to Tyler to still feel so bad, he's doing very well and continuing to improve. I just hope that he experiences some improvement in his foot soon, as that has been one of his biggest difficulties throughout this process.

Tuesday, February 17, 2009

Day 21 - Golf Anyone?

We got a call today with some great news. After looking at today's blood test results, Peter Johnson (our doctor) decided that Tyler gets to drop down to labs twice a week. After going to the doctor's office every day, this will be a welcome change for all of us! So, Tyler has a day of leisure tomorrow and then doctor's appointments on Thursday again.

Tyler's wishing that he could get out for a round of golf, although we don't know how easy it would be right now. He's got a couple of tubes hanging out of his chest, an unresponsive foot, and a general fatigue from all of the trials of the last few months. Despite all of that, he is definitely itching to play.

Test results today:

WBC: 2.94 (going up without the booster shot!!)
HCT: 29%
ANC: 1.91
PLT: 19

As you can see, you can't hold him back now!

Monday, February 16, 2009

Day 20 - Ups and Downs

Tyler had a better day on Sunday, thanks to a good night of sleep. Today (Monday) is a little bit down again. He's taking a nap now, in hopes of feeling a little bit better this afternoon or evening.

Test results from today are:

WBC: 2.56 (Normal 4.3-10.0)
HCT: 28% (Normal 38-50)
ANC: not in yet
PLT: 15 (Normal 150-400)

His schedule for the week looks pretty quiet, so hopefully that proves true. He's got lab draws only Monday, Tuesday, Wednesday, and Friday. Thursday is the day scheduled to see the doctors and the nutritionist.

The nutritionist is an important member of the team, as she helps us to come up with new ways to meet Tyler's needs. Our goal is to eat enough calories and enough protein each day. As it is still difficult to eat some things and he occasionally suffers nausea, Tyler is allowed (and encouraged) to eat the full calorie versions of any food every couple of hours.

Suggested items right now are smoothies (with milk powder and protein powder added in), soups, cottage cheese (which Tyler doesn't really like), ice cream, gravy, and Ensure/Boost supplements. I'm kind of envious sometimes as I make food for Tyler that I wish I had free rein with my calorie intake. Sadly, I'm not exercising nearly enough to eat butter on everything! But it's an interesting shift in thinking to think about getting more calories into every meal I make.

Saturday, February 14, 2009

Day 18 - Happy Valentines Day!

Tyler's blood test results were something to love today!

WBC: 3.68
HCT: 31%
PLT: 13

We hope that his platelet level continues to stay above 10 tomorrow, so that we don't have to stay for a platelet transfusion.

It was nice to have such a quick and easy day at SCCA. We went in for a blood draw and didn't have to wait at all -- there were no others there at the same time. Then we went up to the 6th floor to get the results of the test. The charge nurse said that we could go. Talk about an easy day at the doctor's office.

On the down side, we think Tyler is starting to show some signs of GVHD. We hope that it doesn't get much worse, as it makes his stomach feel unwell. Eating is enough of a challenge, but we could use all of the relief possible from eating related challenges.

We hope that each of you got to spend time with your loved ones today.

Friday, February 13, 2009

Day 17 - You Want Us to What?

Today's lab draw wasn't until 10:45, so we got to have breakfast at home. It's amazing how much easier that makes it to eat healthfully.

After the lab draw, we were supposed to wait around to see if Tyler needed to get his Filgrastim shot. We checked in for the 11:30 appointment and sat around in the waiting room. After about 30 minutes, the staff came to tell us that we didn't need our appointments.

Tyler was thrilled to hear that we didn't have to stay for any more appointments, but we still wanted to get the blood counts for our blog. So we snuck upstairs and one of the charge nurses got Tyler's basic counts for us. It's more good news!

WBC: 3.58 (normal 4-10)
HCT: 30% (normal 37-52)
PLT: 17 (normal 150-400)
ANC: 3.18

Thursday, February 12, 2009

Day 16 - Punchin' the Time Clock

Sometimes Tyler and I talk about how fighting cancer is a full time job. Tyler works every day to eat and exercise and sleep enough for his body to heal. It's definitely a lot for him to worry about, especially if our schedule is disrupted.

Today was one of those days that felt a bit like work. We had our first appointment at SCCA at 9:15 this morning and didn't leave until just after 5pm. There is cause for celebration after today's visit, however.

After our lab appointment we had clinic with our team nurse and team doctor. They schedule these once a week to keep tabs on Tyler and make sure things are still going well. Our nurse, Jackie, checked Tyler's vitals when we first got there. When our doctor, Peter, got there he asked if Jackie had told us the good news. Jackie hadn't said anything about good news, so they got my curiosity up.

Still we had to ask what was up. It turns out that Tyler is doing SO well that they are stopping the IV antibiotic and switching the Tacrolimus to pill form. We were going into the clinic for daily infusions for those two items, which meant at least a few hours there every day. With this schedule change, we think most of our days will be lab draws, once a week clinics, and physical therapy appointments.

In addition, they will be stopping the Filgrastim shots either today or tomorrow. They've warned us that the blood counts will probably drop a little bit once they stop giving Tyler that booster shot, but we can live with that (especially since the shots are painful to get).

So... Are you ready to hear Tyler's blood counts from today?

WBC: 2.11 thousand (normal 4-10)
ANC: 1.79 thousand (normal > 1.0)
HCT: 26 % (normal 37-52%) --> We got red blood transfusions today
PLT: 17 (normal 150-400)

His hematocrit (HCT) was 26% yesterday, so I was pleased to see that had held steady. And his Platelets (PLT) got a good bump from the platelet transfusion yesterday.

Wednesday, February 11, 2009

Day 15 - Batting a Thousand

Tyler was back to his normal ways getting a bag of platelets again today, but the news from the lab was still good. His white blood cell count hit 1000 today. Normal ranges are 4000-10,000 so this was an amazing step. The Neutrophil count was 870 and we are looking to get them over 1000 as well.

Acute GVHD typically rears its head within the first 3-4 weeks after transplant in 2 out of 3 transplants with related donors, so that's the next thing I'm keeping an eye out for. Hopefully the symptoms are mild and treatable, if Tyler is in the unlucky part of that equation.

Thanks for the celebrations via blog comments and e-mails. We can't quite believe that the new marrow has started production and is churning out new blood in such quick quantities.

Tuesday, February 10, 2009

Day 14 - Climbing the Mountain

Tyler posted more increases today -- .39 for his white blood cells and .33 for his neutrophils. The Filgrastim shots that he has been getting have helped boost the percentage of neutrophils in his body, so that is partially responsible for these great boosts.

Another good note for today is that Tyler held on to enough Platelets from yesterday's bag that he didn't have to get a transfusion today for the first time since January 28th.

That's all for tonight, folks...

Monday, February 9, 2009

Day 13 - Lucky Number 13!

Today's blood test showed the first glimmers of White Blood Cells! While our doctor cautioned us that the counts will probably fluctuate up and down for awhile, we are THRILLED to report that Tyler showed .16 WBC's today! AND he had .13 neutrophils mixed in there.

We had our first outpatient clinic, but it really took a backseat to the exciting test results we got. Tyler did get a platelet transfusion and some IV drugs, but it was a pretty quick day at the clinic. I'm hoping that these glimmers of WBC's mean that Tyler will start providing enough healthy blood to stop these transfusions.

They are still playing with the Tacrolimus level in Tyler's blood, but hope to get that settled over this week. Once they've established the correct dose for Tyler, they will probably switch him to the pill form of the drug to cut down on the number of scheduled IV's needed.

Hooray for the great test results today!!

Sunday, February 8, 2009

Day 12 - Heading Home

After the slight delay, Tyler and I are heading home this afternoon. While we were getting some new blood and waiting to go, Tyler's aunt and uncle stopped by to visit. It was fun to hear how their family is doing.

Tyler will have daily clinic visits for a while, but we hope that his new marrow will take over the job of making new (healthy!!) blood for Tyler in the next week or two. If memory serves us correctly, Day 22 was the magic day for new white blood cells after his Induction Therapy in November.

Saturday, February 7, 2009

Day 11 - Date Night

We had a pretty low key day today. Tyler's uncle, Don, surprised us by stopping by to say hi. Tyler's mom, Andrea, also came to visit this afternoon, so we had some fun entertaining.

They've changed Tyler's schedule here, as he is doing so well that he needs less support. He gets about 1 liter of hydration in the morning, but it only runs for about 4 hours. He gets one IV drug and might get some blood transfusions, but those can typically be run at the same time as the hydration. This means that we spend the majority of the day and night unhooked. It's significantly easier to get out for walks, move around the room, and pretend life is normal when you aren't tethered to an IV pole.

This evening, we got caught up in watching a few of the movies on TV. Tyler hadn't seen Apollo 13 and I haven't seen it in a long time, so we sat back to enjoy a movie night together.

We appear to be on track for a departure tomorrow, but we're reluctant to hold our breath this time. Tyler's Tacrolimus level was still at 3 today, so I am concerned that may delay our departure by a few days. They seem to want to bump that number up before they release us. We still stand a chance though, as the attending physicians rotate off duty around the 7th of each month, giving us a new Outpatient Attending to approve or deny our departure.

Good news from friends

We heard on Thursday of this week that two of our friends hit significant milestones in their own battles.

One just completed his 5th year of remission from Lymphoma, which is an important benchmark in cancer recovery. He is the friend who shared with us his experiences of going through a bone marrow transplant and some of what we could expect. We are thrilled to hear that he is doing so well today. Hooray!

Hans also hit his first level of remission for his CML, the hematologic remission. That means no signs of leukemia in his blood. It's great news ahead of schedule.

Congrats to both of them! We're celebrating the victories with both of you!

Friday, February 6, 2009

Gettin' Shaggy With It

You might not be able to see it, but Tyler's hair has been growing back in. I've been teasing him that it will come in grey, since he is such an "old" man, but it looks like the same brown we had before. Tyler says that the new hair makes the back of his head hot as he lays on the pillow, so he kind of misses the baldness.

Mostly this photo just shows the shadow of where it is growing back in, but it's fun to see him healing. As you can see, his facial hair never stopped growing!

The nurse behind Tyler is Kristen and she has been his wonderful caregiver for the past several days. Today was her last day with us, so we'll miss her.

Changed their Minds

The attending physician in the Outpatient Clinic decided she didn't want Tyler is the outpatient clinic yet, so we are set to stay here for 2 more days. Bummer! We weren't thinking about going until the inpatient doctor said something this morning, but now we are very disappointed to have the plans change.

They will be watching the Tacrolimus level for Tyler over the next two days as a benchmark for discharge. They want him to be in the 10-15 range when he is at his lowest point for the medicine in his system. Yesterday morning, he was only at 3.

Day 10 - Surprise

When the doctors came by on rounds this morning, they told us that we can probably go home late this afternoon because Tyler is doing so well! We'll have to go to SCCA every day for monitoring and frequent transfusions, but we'll get to go home at night and sleep in our own bed.


Thursday, February 5, 2009

Day 9 - Surviving the Rough Patches

We've had a few rough days, but Tyler is hanging in there. He just feels generally crappy some days, and that's hard to take. He's been so strong and healthy for 40+ years that to be increasingly sick over the last 6 months has taken a big toll on his spirits. He's having trouble sleeping and eating, but that is to be expected for this period of the transplant and in hospital life. Thankfully his mucousitis is nowhere near the pain that he experienced in the fall and he is still eating lots of different foods.

The doctors have been a little bit concerned because Tyler doesn't sem to be holding on to his platelets right now. Every day he is at about 10 (when normal ranges are 150-400). He gets a bag of platelets and we would expect to see a bump of about 10, but he just isn't getting the expected bump in his counts. Getting transfusions isn't a big deal anymore, but it's just one more thing added to our day.

They tested him for antibodies to Platelets and we are relieved that he still hasn't formed antibodies to them. Apparently, after many transfusions, your body will actually develop a resistance to blood products. This makes it much more difficult for the patient to get a transfusion bump, as their body will kill off the "foreign" cells.

We are hanging in there, but he is starting to crave some new foods. We find that moist foods work best with his sore throat, so he eats a lot of soup and drinks shakes. He mentioned today that he might have me smuggle in some frozen dinners to have some new food options. I'm eating more than my share, but Tyler thinks the food here could be improved.

Sorry for the long delay in posting. I know that several people are waiting to hear the news, especially considering that this is such a big deal in our lives. Thanks for bearing with us and reminding me to post if I go to long. :)

Sunday, February 1, 2009

Day 5 - Superbowl Sunday

We were rooting for Arizona, so we were disapointed to see the Steelers sneak past them again in the last few minutes. But... At least it was a good game to watch, right?

And I forced us to stay awake to watch the Sounders Super Search after the game. I'm thrilled that we finally have an MLS team and can't wait to start watching games for that team. Although neither of our favorite players made it on to the team, I think it was a neat idea to allow an unknown to compete for a roster spot on the Sounders soccer team.

Things continue to be on a pretty even keel here at UWMC, so we're continuing to work on keeping Tyler as healthy as possible. His platelets have not been rising with the platelet transfusions over the past few days, but he is holding steady at 10 (normal range is 150-400). On Monday they are testing to see if he has developed antibodies to blood products.