Day -9

Today is K's first day of BMT. I am out in the waiting room while she's getting her first TBI. They wouldn't let me in. After that, she gets a new Hickman Central Line, which surprisingly she's looking forward to. Today is Day -9 because Day 0 is the day she gets the stem cells. I can say that she's in great spirits and happy to finally be moving forward with her treatment.

K says TBI was no big deal, she didn't feel a thing. 15 minutes of buzzing was the only annoyance. Now she waits in full patient regalia for the hickman.

So, she's checked in now. It's not bad at all. Everyone's very nice and she'll get lots of attention; it's very nearly one to one here. Below is the view from her window.

Here we go

It's Monday, early afternoon, and Joe and I are sitting in the BMT clinic at Huntsman. I've just gotten an IV and some blood drawn, both of which barely hurt! I love the nurses in this clinic, they all know everything about me, and it's much more personal than the oncology clinic that I was going to before. But that means that I'm officially a BMT patient, so I won't be going to my hematologist oncologist until the BMT people are done with me, which will probably be 6 months or more. It's a little strange changing hands like that, but like I said, the people here are wonderful.

So the schedule of events starts out today with a bone marrow biopsy and a "lumbar puncture" which is a spinal tap. Wow. I'll let you know how that goes, but based on the talk of the nurses, they are really concerned about pain, so I'm not too worried. Then, tomorrow morning at 8am I go in for the first day of radiation. After that I'll get checked into the BMT unit at the University Hospital and at 1 I get a new central line placed. I'm definately looking forward to the line, since I'm sick of being poked! Overall I'm not too nervous, I think things will go good, and I'm looking forward to getting this behind me!

[joe says] The image to the left is three vials of K's CSF. It was interesting, and I now understand why they call it a "tap". It was a bit like milking a maple tree to make syrup.

She's home!

Kristi's Neutrophil counts hit 1K today, which is more than enough to get her home. She's got one week to enjoy life on the outside before she goes in for a solid six weeks. We will be making the best of it for sure. For now, "making the best of it" is a nap in her own bed. My main objective this week is getting her recovered; slept, fed, and exercised.

Every little bit

Well, it's Sunday, and I'm still here in Huntsman, but, my counts are going up. We are waiting for my nutrifill counts to get above 500. Yesterday they were at 200, today we're at 380, so that's a marked improvement, and finally during rounds they could actually say my counts are getting better. I was getting a little disheartened for a day or two, but it's mostly cause I wanna get the heck outta here! So, there is a chance that I can leave tomorrow after another Ultrasound of the blood clot in my arm, but of course, that depends on counts.

Happy Friday!

Well, today was another day of education, but first I got a CT scan of my abdomen and pelvis which meant a big hearty breakfast of contrast. I really take advantage of the anti-nausea drugs, since that stuff is pretty dang gross. However, the drugs make me really sleepy, as Liz and Miriah can attest to - thanks for visiting, sorry I couldn't stay awake! Finally I got up at 1pm and had some lunch and then went downstairs for the TBI consult. More side/after/long term effects, but all in all it doesn't sound too bad. It will be tiring, but it won't hurt. So that starts 8am Tues the 31st. I'm starting to feel better about this whole thing.

My other news is that I had to get another IV today. I don't know if I told ya'll I got a new one last night, they only should be in 4 days, and my first one had to go. Last night's insertion wasn't too bad, but by the end of today it started to leak as in fluid was coming out of the hole the needle went in -YUCK. So, I got a new one from an Airmed Nurse, which is a better bet that they can get one in me. It hurt, but now it's quite comfortable. I now think that the lovanox shots are not as bad as IV's, but they still are pretty lame. Well, I'm about to head to bed. I've finally got prescribed sleeping pills, rather than having to take pain pills for sleep, so that's really great. Tomorrow should be pretty quite, hopefully I'll get some work done!

Sorry I don't have pictures, but all they would be of is the thousands of prick marks on my arms and tummy, and you wouldn't want to see that!

Meetings, Meetings, and a Slightly Higher Count

So today was filled with Bone Marrow Transplant (BMT) education. I had a visit from a nurse who gave us a full overview of the process, a pharmacist, dietitian, social worker, and financial guy. It's great to get all of this information, but MAN is it overwhelming. All of the stats and possible side-effects, any thing bad that could happen. I'm a little freaked out by the whole thing. Of course, there were the same things with the induction and consolidation chemo, and I did really well. As Han Solo said, "Never tell me the odds." Anyway, the treatment regimen is going to be 6 days of total body irradiation (TBI) and two days of chemo therapy which is just a one-hour drip each day. Then a day a of rest and I'll be infused with the new cells. Then, it's recovery for the rest of the time. When they decide to release me, it'll be based on my blood counts as well as my ability to eat, I guess it's common to have eating problems like nausea and mouth sores.

In present news, I'm feeling good, and haven't had a fever in a a couple days now. My sore throat is also almost gone, and my arm doesn't hurt any more, but I can still tell there is some clot there. My white blood count has risen to .68, once it goes above 1.000 I can go home! The doc thinks that might be Monday. I'm hoping it's sooner! Wish me blood cells!

I have a SCHEDULE!

Well, I just talked to my BMT coordinator and it looks like things have actually settled into specific dates, crazy! So I am planned to be admitted for my bone marrow transplant on July 31st. Then, my donor cells will be hand-delivered to my pole (octopus as Joe calls it) on August 9th. So before then, I have to 1)get my white blood count up and get the heck outta huntsman
2)try to figure out my transplant wardrobe 3)go to dozens of doctor's appointments 4)knock off all my other to-do lists and 5) have lots and lots of fun, which will include a visit from Gordon and Kim and Xavier's wedding! Well, I'm off to grow some white blood cells.

It's Raining

So, the weather outside is crazy, and one nice thing about being up here is that I get a really good view of it. So here it is. On another note, I'll let you know what my days up here have been like!

My day starts off between 6 and 7 with a blood draw. I'm starting not to mind these as much, depending on the phlebotomist and the type of needle they use, it can be pretty close to painless. Plus, if it does hurt, it's over in just a couple minutes. Next, I get a visit from the new nurse on duty, answer the same old questions about pain and bm's and any other complaints, and then get the chest/heart/lung/tummy exam with the stethoscope. The aide takes vitals at various times throughout the morning. Then around 9am it's time for meds, my anitfungal (by mouth) and the really stingy, bruisy, I'm complaining now, blood thinner shot. My folks have been nice enough to get up early and arrive here around this time too. Of course I'm not out of bed or anything, it's still 9 in the morning! So I lounge and eat some breakfast and lounge until the doctor's do their rounds anytime before 11. About this time I'm feeling gross enough to get out of bed and into the shower. Next is the nuepogen shot, which, like the blood drawing I'm starting to not mind. It can sting a little if the nurse pushes too hard, but it goes away instantly. The blood thinner stings for like 5 more minutes! Anyway, I get another blood thinner shot around 9 and an anti-fungal, and they are also drawing blood at night to check on my platelet levels. They are giving me antibiotics too through the IV, but since I don't get poked, I don't really pay attention to their scheduling. So there it is, 5 pokes a day, the 1st, 3rd and 5th which aren't so bad, and the other two which seem to have become the rant of this post. I hope you like the photo.

Finally! An update

Ok, so Joe has added me (KP) as a blogger so that I can keep everyone up-to-date while he's busy being a professor, and hopefully between the two of us we can keep ya'll informed on what's going on, which in the next few weeks will be alot.

So, since the last post you know that I went through a "consolidation" round of chemo, and was released to go home. Since then I've had a few complications, the first being the prednisolone eye drops I was given to protect my eye from the chemo. I was starting to get blurry vision, and the doc said I could stop the drops. Well, the next day I could barely open my eyes, and I went to the Moran Eye Center Triage. There, they gave me a full eye exam, learned about the effects of cytarabine on the eyes and diagnosed me with extremely dry eyes. So, I am now on a constant regimen of eye drops (like once an hour). But my eyes are feeling much better now and my vision seems to be clearing up.

Unfortunately this eye issue overshadowed another, more serious complication, that of my arm hurting where they had put in the midline. It had hurt in the hospital, and since it's removal has hurt less and less, but I noticed that my veins were popping out when I used the arm. Well, I didn't stress over it until 9pm Friday night (good timing) and so Joe and I went into the ER for 3 hours, but they didn't have an ultrasound tech on-call, so long story short, I went back with my parents on Saturday (another 6 hours) and finally got an ultrasound that showed a blot clot from basically the point of insertion up to the sub-clavical vein (like the whole length of the midline). So, that means I need to go on blood thinners, but because of the chemo, I have low platelets levels which means I now have to navigate a tight rope between getting the blood thinners and maintaining platelet levels.

So, after all of that time spent in the ER, Sunday morning I wake up with a fever and get checked back into Huntsman. It's a bit of a bummer, but now they can manage the whole blood thinner/platelet level issue without much trouble. My platelet level is being checked twice a day, and I get a couple of lovanox shots (blood thinners) each day in the tummy fat which are stingy and make big bruises. I actually managed to give myself the injection before we came into Huntsman on Sunday, and have been self-administering daily shots of nuepogen (stimulates white blood cells), something that I never thought I would be able to do (and it's not so horrible). Though it is nicer to have a nurse do it so I can look away and cringe.

They have me on antibiotics, but my fevers seem to come and go, however I'm feeling better than I did yesterday. I'll be staying here until my white blood count is high enough to let me leave with some sort of immune system. My room # is 4509 and my cell phone actually works in this room!

The Icky

Kristi lives in a neat converted warehouse run by Artspace. It has one major problem: pigeons (a.k.a. sky-rats). They simply love the very high, dark rafters of the common courtyard interior. The courtyards have some nice, open skylights which they use as doors. The management of the complex is well aware of the problem, but simply refuse to do anything about it. Save one instance, when they put up spikey things on the outside patio so that the business located here can have catered parties (sans pigeon droppings in the cake). I have been very diligent about discouraging the pigeons using a squirt gun loaded with cayenne peppered water. This works but as soon as you let up for even a day, they are back. Needless to say, the entire interior of her building is covered in guano. I drafted a nice letter to the management about he problem, but haven't heard a thing. Last weekend, I gained access to the roof and put up plastic chicken wire around the seven 2.5ft by 50ft openings that the pigeons use to get into the courtyard. Today, I ran into our security guy, Jonah, who said that the building manager, Mandy (364-1019 whom I have never been able to get a hold of), told him, "You can't do that, take it down." Needless to say, I am livid. Tomorrow, I will be calling the Salt Lake Valley Health Department, hiring a lawyer, and doing my very best to find out who Mandy Beeler's superior is. I feel strongly that this situation is very unsanitary, even for a healthy person. John, our next door neighbor, won't let his dog walk across the courtyard floor. I also think that Kristi's trip to the hospital last month was due to the pigeon crap. You can imagine this is going to be a problem now that K is nearly neutropenic and about to enter the bone marrow transplant, which will leave her even more compromised. The picture above is what a typical hand-rail looks like inside the building. The picture below is the floor underneath one of their nests. The great thing happens when the tenants of the art studios hose the pigeon poo off the catwalk onto our resident patio space below [sic], makes a lovely sludge for us to walk through on our way to garage and garbage dumpster.

Home again, home again

We brought K home yesterday (Sunday) at noon. The whole day was pretty miserable for her. She was beat from the chemo and her arm hurt from the line. They took it out before she left, but I think that only enraged her arm. We did everything we could think of to make her comfortable. Once she got through the night, however, things got right back to normal. She woke up early feeling good and a bit restless. We have tons of doctors appointments to keep us busy, don't worry.

Pokey Things

It took some convincing, but earlier this morning Kristi's Oncology Fellow talked her into getting another midline installed. After the trauma of the Hickman removal, she was not interested in any line. The negotiation included morphine, Valium, and lidocaine. She had the same techs install it as the last one, they did a great job. The only painful bit was the lidocaine. The main rationale for getting the line is the risk of vein rupture using a "peripheral line" (traditional IV). Apparently the fine veins in the wrist and upper arm aren't strong enough to endure the non-stop drips that she's on. Anyway, she's far more comfortable now without a metal needle in her arm.

Consolidation

Kristi got the call that a bed was available a the Huntsman today at 3pm. They wanted her there by 3:45. It's 4:00 and we are checked in. She will have 3 rounds of high-dose AraC over 5 days. Because of the infection a month ago, she will be an in-patient for the whole thing.

K also got a call from her BMT coordinator today. She's been fully approved for the transplant and a marrow/stem cell order has been placed for 5 weeks from now. This means that she will probably go in for the Transplant on August 1. She has agreed to be part of a study to which she may randomize to have only the stem cells, rather than the raw/filtered marrow. The information we have read about this study has been very positive.