Day +24

Oh, hello, folks. I'm alive and well.

It's been a long few weeks. The wifi in the hospital was spotty, and I ended up not being able to access my blog for the rest of my time there. I was released on Monday, Day +18.

3 weeks, 4 days inpatient.

This has been the hardest thing I've ever done. The first week or so was the worst. The last week or so, I felt like there was a light at the end of the tunnel. In between is a blur of 4-hour vitals, daily labs, beeping infusion pumps, walking laps around the unit, measured urine, hospital meals, countless cups of ice water, and the taste of saline in my nose and throat. My counts dropped very late in the game (Day +14) so they finally gave me a shot of neupogen, that, while insanely painful, worked very well. It continued to work for three days. Once my White Blood Cell (WBC) count was high enough, I was discharged.

It felt like Brandon hugged me for an hour outside the hospital door. When I got in the car, Jazz pretended to be asleep, but once we got to the hotel, he had plenty to say. The first thing he did we show me his new ninja turtle shoes, and told me the character's names. Too cool. I cried, holding Jazz that evening, smelling his hair. I felt like I could finally sleep, now that I was back next to my husband, no midnight vitals and 4 am labs, no tubes connecting me to an IV pole.

Now, don't get me wrong. Physically, this was not as bad as my last transplant. It was a "reduced intensity chemo" because it didn't need to devastate my bone marrow this time. Also, being inpatient meant that I had food, medication, and life-saving help at the press of a button.

The biggest part was mental. Being isolated. Being away from my friends, being away the family that makes me whole. You can tell yourself a million times that your going away for a month to buy yourself years or even decades. (I did.) But once you're there.... once I was there... The sadness and longing is indescribable.

So. Tomorrow, we will be drawing some extra blood, checking to see how well Laura's cells are taking over my immune system. We will have results in 7-10 days. Until then, I go to the outpatient BMT clinic every other day for labs and transfusions. I always get two bags of magnesium when I go in, and it turns out I'm very sensitive to it. They have to run it for three hours instead of the regular two, and I still feel terrible for the rest of the day.

But there is still so much to be thankful for. I keep reminding myself of that. I don't feel tumors climbing up my throat. I can breathe. I am getting stronger every week.

Living in a tiny hotel room with two other people, one being a particularly sensitive and defiant toddler, in a busy and expensive city, away from the place we made home, is very very hard. It's so wonderful to be together again, but it's still so hard. But I'm so thankful to feel the wind again, to be with my family, to walk without lugging around an IV pole. It's hard. But I'm thankful.

60 some days to go.

Day -3

We arrived at 7:30 am Friday morning (day -6). I got my first round of chemo, Fludarabine, and after many long hours without food or drink later, I finally had the trifusion catheter placed in my chest. There was some vomiting, and pain pills over night, and more vomiting, but by the next day, I felt alright. I'm given Klonopin at regular intervals as an anti-seizure precaution, so that keeps me sleepy and/or loopy for good parts of the day. On Saturday, (day -5) I received another dose of Fludarabine, and another chemo called Busulfan. Same thing, Fludarabine and Busulfan, on Sunday (day -4). Now it's Monday, day -3, and I've had my Fludarabine, stool softeners, Klonopins, blood-thinner shots to the tummy, and Lazix to drain off the many pounds of fluids my body's accumulated. Feeling much lighter now, for sure!

So. Some pros I've found to doing this chunk of the journey inpatient:

*Super nice nurses and aides that come to help at the push of a button. This includes bringing chocolate pudding. Happy Sara.
*Food that is ordered by phone and delivered to your bed. Awesome.
*And the best part? A kindly female aide comes and covers my boob/trifusion catheter with tagaderm adhesive,  so I don't have to awkwardly tape saran wrap to my chest every day!

Tomorrow is more chemo, the next day is the "rest day," and then Thursday, April 10th, is day zero, when I receive Laura's stem cells, and we all think happy thoughts of engraftment and new healthy immune systems and sloths and a cancer-free future.

Sorry folks. Klonopin's kicking in.

Bonus day

A few changes in the schedule, for those still following along. I will be checking in on Friday, April 4th, moving the rest of our schedule forward one day. So my "re-birthday" will be April 10th. The consent conference is tomorrow morning, where we'll go over everything and sign papers and whatnot. I also decided to go ahead and get my catheter put in my chest again, instead of getting a PICC line in my arm. As annoying as it is to shower, and as creepy and uncomfortable as a central line is, it seems to be the easier to hide and the sturdier of the choices. Both good ideas when eventually dealing with a snuggly and energetic toddler. So, you know. Ugh. Anyhoo.

Jazz and I had one last play date with my best friend Kelsey and her son. She's due to have her second baby any day now, and I'm sad that I won't be here for her. But I know she'll send pictures and text me randomly. I'll miss our play dates so much.

So I have tomorrow afternoon and all of Thursday with my boys. A bonus day! Maybe we'll go to the zoo if the weather is nice, or maybe we'll just snuggle up on the couch and eat snacks and watch Curious George. I'll cherish my time, and as usual, try not to think too much of the future.

See you in  few days, folks.

It begins one week from today.

Two days full of scans, x-rays, lab work, evaluations, work-ups, and meet-ups with doctors, ending in a bone marrow biopsy, have brought us to the precipice of transplant.

I will be checked in to KU Med at 8:00am, Thursday, April 3rd. (This will be known as day -6 as we count down to the day of the transplant.) We will have our consent conference, where we go over all of the information one more time, risks and possible complications, and I sign at the line. I will then have a trifusion catheter put in, and start chemo. This begins my 3-6 weeks of inpatient stuff. I will continue to receive chemo until day -1, which will be a rest day. Then, on Wednesday, April 9th, I will be given Laura's stem cells. It will be my new re-birthday. My re-re-birthday?

Anyhoo. After that, it's feeling like crap and waiting and watching. Anti-emetics, anti-viral, anti-bacterial, anti-rejection, and immunosuppressive drugs will be fed into me one way or another. Careful monitoring for infection, rejection, and Graft-Versus-Host-Disease. Counting down the days to engraftment, counting down the days until I can see my boys again. I keep telling myself that it's trading a small time away for a long life with my family. If this gives me more time with my husband and son, I can make it through a month without them.

After I'm discharged, It's off to an extended stay hotel in KC for the next two months, or until we hit 100 days post-transplant. (In transplant-speak, that's Day 100+) At first I'll go to the clinic for labs every day, then every other day, then once a week. At Day 100+ we do another bone marrow biopsy (ugh) and check to see if my cells are 100% Laura's. They will be. I know it. But if it's not at 100%, then we have to gather more stem cells from Laura and "top it off" (my doctor's words.)

So for the next week, I'm wrapping up loose ends, putting in my last day at work, doing some shopping, preparing, and packing. Mentally preparing while trying to ignore the inevitable.

But mostly, I'm taking in every minute I can with Jazz. Playing and snuggling and breathing him in.


I'm scared and I'm hopeful. I guess that's all there is to say.

The Game Plan

The appointment at the BMT clinic yesterday was hopeful. We were able to develop a bit of a timeline.

Tomorrow, I get my last dose of (this type of) chemo. Then, on the 25th, it's off to KU Med for a PET scan to get a good idea of what we're dealing with at this point. We will have an appointment a few hours later with one of my doctors to discuss the scan, and where we go from there depends on what we see. If we see a lot of disease still, then we will plan on a high dose chemo to prepare for the transplant. If I'm mostly in remission, it will be a lower dose chemo. If there is no evidence of disease, it will be a very low dose chemo. Either way, it will be 6-8 days of chemo, and a total of 4-6 weeks inpatient at KU Med.

That's right. The first month of this one is all in the hospital.

Which is kind of a relief, actually. I won't have to go back to Hope Lodge, which was a really wonderful place to stay, but I just have too many bad memories there. Also, I feel safe knowing that if I have a problem or a reaction, I have nurses and doctors right there to help.

So, anyhoo. On the 26th, it will be tons of tests and appointments with various medical professionals. Labs, EKG, X-rays, bone marrow biopsy (ugh). Nutritionist, Psychiatrist, etc. Then, on the the week of the 31st, we'll have the consent conference. That's where I sign all of the paperwork to consent to the procedure, and we go through everything one more time. Then we'll get me checked in to KU Med, get another tri-fusion catheter put in my chest, and start chemo. Meanwhile, my sister will start getting Neupogen injections to rev up her white blood cell production. After a few days of injections, they'll collect her stem cells through apheresis, and in the same day, give them to me. It doesn't get fresher than that!

Then, we wait. And check. And wait. For my white blood cell count to rise. They'll monitor my labs, and look for engraftment, watch for rejection and Graft-Versus-Host Disease. I will be, once again, without an immune system. Eventually, my sister's stem cells will replace mine completely, replacing weak for strong, and I will have her bone marrow. I'll even have her blood type. I hope I get her hair.

Once the stem cells have engrafted, it's daily lab work ups, and while I'll still have to be in KC, I'll be discharged from the hospital. My immune system will still be very compromised.

Then, at a hundred days, we'll do another bone marrow biopsy (ugh). And if my understanding is correct, what we want to see is that my bone marrow is 100% Laura's cells.

So that's the plan.

Now, if you'll excuse me, a very cute little dude just woke up from his nap, and we have a play date in the park with Henry.

3/9/14

Jazz's birthday was nice. We had pizza, which he was thrilled about. (He yells "Peets! Peets!") His favorite toy was three helium balloons, that he carried around the house until they deflated. We haven't really gotten to play outside this last week, but it's looking like this afternoon we'll finally get out in the sunshine! I'm certainly looking forward to it, now that I'm starting to feel a little better after Thursday's chemo.

I have an appointment at the BMT clinic on Wednesday afternoon. This should be the one where we start to schedule scans and tests. Hopefully we'll get some sort of game plan or time line. I'm very interested to know more about what happens with an allogenic transplant. I find that the more details I know, the less anxiety I have about it all. And I have, as you may imagine, been very anxious. Panic sets in when my mind wanders in the evening.

I'm definitely getting nervous, but as my doctor said on Thursday, "we have to strike while the iron's hot." The chemo regimen we've been using seems to be doing a good job at shrinking the tumors, or at least keeping them at bay. So we have to get this transplant started soon.

I don't think I'll ever be ready. But I know that it will all just be an unpleasant memory soon.

The dude

Thankfully, there's not a lot to report on the treatment front. This is my "off week", so on Friday it was just an office visit, blood work and a Neupogen injection. My doctor here in town asked me to go ahead and schedule a visit for the week after next with the BMT clinic in KC to start scheduling scans and get this thing going. So despite the fatigue, despite the weakness, I'm enjoying feeling pretty okay and just spending time with my family.

Which brings me to the important news: My little dude turns TWO on Tuesday! I can barely believe it. He's doing such a great job. This kid. Jasper. God, he's just the coolest. He's easy to laugh and will dance to any music, he's tough and strong, he's stubborn and emotional and full of fire and spirit. He has a great sense of humor. He's playful and loving and so skinny and tall. And now he's almost two years old and I'm just so proud of him. So many people lament their children growing up, and I can't wrap my mind around that mindset. It's what they're meant to do. And they do it so well if we let them. Each stage of of childhood has it's more enjoyable and less enjoyable aspects, but each stage is so neat to watch unfold. His communication, understanding, and curiosity are so fun to watch blossom. But with all of that comes the melt-downs and big emotions of a human trying to let you know what they want, but not understanding why they can't always have it.

So we'll have a little family get together tomorrow. Low-key, a couple presents to unwrap, a cake with Curious George on it. Ice cream. Then we'll have a play date with his best baby buddy Henry (My best friend Kelsey's little boy) on Tuesday. And I'll keep breathing in his smell and kissing his cheeks even though he growls and turns away with a smile. And I will take every moment with him in. Because soon, I'll be going a month without him, and I need all of the playtime and giggles and wonderful memories I can get.