Day +3

Things are moving along up here. I am incredibly sleepy and find it hard to do anything but shut my eyes. As tempting as it would be to sleep this one off, the doctors have said that staying in bed will just slow things down.

The lining issues are worsening as expected. My morphine was upped to keep a constant amount in my system and that has helped. I pretty much don't eat anymore - a little applesauce or pudding and sips of Gatorade. Again, this is very typical for transplant patients.

Yesterday I spiked my first fever so I was sent for chest xray (I got to leave my room!!!) and they drew blood for cultures. It seemed to break during the night. I had blood and platelet transfusions yesterday, but only platelets today.

Mom and Brant will be switching places a week from Tuesday. Hopefully I will be a different person by then and starting to make my own blood cells. It will be nice to hang out with him for a week. Mom went to the local Baptist church for services today and has been keeping busy with reading and writing. I feel badly that this is so hard on her, too, but I know she'd rather be here than in Virginia.

Day +1 Yuk!

Gotta tell you that I feel horrible. The nurses are so cheerful saying "yep! that's exactly where you are supposed to be." I can't think about more than one day at a time or I may jump from the windows. I try to remind myself it is cancer I am trying to get rid of and it won't be a walk in the park.

Today I got a morphine pump to help with the general pain and the pain caused by losing the lining in my mouth and esophagus. It is a small dose and shouldn't leave me with pink elephants in the room. I am hoping it will allow some good sleep tonight.

We have a few more hours to kill before bedtime. We're going to try Grey's Anatomy as a new show (I've never seen it). I'm also taking suggestions on a good day time soap.

Thanks for the comments and emails. They help brighten these long days.

DAY 0 - TRANSPLANT!

This was it, the big day, the day which all other days are counted from. My wayward stem cells were sent home after a brief vacation at the -180 degrees Club Kettering Lab. They arrived in my room in that same little igloo cooler that had transported them during collection. The lab technician warmed them in a bath and then sucked them from the bag up into a giant syringe. The cells were pushed into the port of my catheter just like any other medication I have received.

It wasn't supposed to be a very big deal, but I did feel like I was gagging and having to cough all at once. I thought I would get sick, but it passed. The odor from the preservative is pretty nappy, so the nurse held cut lemons under my nose. I don't think that helped much since I mostly tasted it and not smelled it. But I survived. I rested for a few hours afterwards while some abdominal cramps subsided. They also gave me a blood transfusion since my hemoglobin was low.

I am glad the process is over and I have my little guys back on board. It will take at least 10 days for them to kick into gear. Until then, it is just a matter of managing any issues related to having no immunity.

Day -1 and CHEMO IS DONE

Today is my day of rest. I finished my BCNU chemo last night around 7:30pm. This chemical is sorta related to mustard gas....nice..... It got a little rough towards the end but luckily it was time for Idol and then some sleeping meds. I had a long night of potty breaks (these are sooooo old) and one time woke up scared that there was an evil scarecrow blocking my way to the bathroom. It took a few minutes to realize it was my IV pole that I needed to tote with me.

Today I feel much better and was able to eat a little breaksfast. My white blood cells and neutrophils (the special WBCs that fight infections) are well under 0.5 on their way down to zero!! So my diet has changed to neutropenic and as of tomorrow the door to my room will close and no more walks in the hall. My platelets and red blood cells have been hanging in there, so no transfusions yet, but probably in another day or two.

Mom is out today getting her "therapy".....doing laundry at a little spot she found around the corner. All in all we are doing well. I am so grateful to have made it thru chemo and am praying my low count symptoms will be mild.

Day -2.5 and Hanging On

I had a rough Sunday and did not post. The main thing yesterday is that is that the pharmacy put all of my chemo med in a 12 hour bag instead of a 24 hour bag. By the time we figured it out, I had already been slammed with most of it at the higher rate....which was apparently no problem from a toxicology standpoint, but it did increase the side affects significantly. I was nauseous and unable to focus on much. My eye sight is off so even typing can be rough. But the good news is that today (Monday), the effects have started to wear off and am making it back around the floor for a few laps.

I also found out that my last chemo (BCNU) must be given on its own day which will be tomorrow. Then I get a full day of rest (YEAH!) and my transplant will now be on Thursday. So that is why I labelled today -2.5. Although this adds a day to my treatment, I will gladly take it to have the extra day before the transplant begins.

This is definitely a challenge. Being confined to a small room except for a few laps while feeling like total cr*8 is no fun. But I had the best phone call with Brant today who reminded me to focus on the little steps. I am almost done with chemo - that is step one. I don't need to focus on the whole process. Speaking of home, sounds like things are in full swing and that Brant's mom Pat is doing as wonderful job down there helping out as my mom is up here. THANK GOD FOR MOTHERS (and the rest of our friends and family, too!!!)

Day -4 A little bit better

I am over halfway thru my two big chemos of the CBV cocktail I am on. The "B" chemo is a one day dose given by itself on the last day...so I am just ignoring that for now. After my rough day yesterday, they slowed down the infusion of one of the drugs and it made a big difference. Plus they got my electrolytes and fluids back to normal and I think that helped. I was in better spirits today, but it is still hard to make the time pass when it is dificult to focus on anything like reading or TV or stuff you would normally do if you were given say.....18 hours a day to yourself. We do walk the halls about four times a day, and I did a little more scrapbooking.

I have read in short spurts today and came across this passage today in Psalms that made me smile: Ps. 50:15 - "Trust me in your times of trouble, and I will rescue you, and you will give me glory". There is always a plan.

Day -5 .... A little bit rough

I think I can say this has been one of the slowest, longest days that I can remember. My chemo consists of a huge bag of Etoposide that drips in for a 24 hour period. It started last night and is about to finish up. Then I have three more days of these bags. Also, I get a little bag of Cytoxan every twelve hours for four days (eight bags) and am about to start bag three. It has hit me a little harder and faster than I expected and I find myself wondering how I will make it to next week. It is definitely a mental struggle of "how will I get thru this??" When it was only three days of chemo it was a little easier to push thru.

I have mostly layed around as the minutes tick by. We watched a movie together (well, I dozed thru it), read a little, and have walked the "loop" a few times. I even pulled out my pictures and did one page in my album. Focusing on anything for very long is tough. All of the extra fluids are bloating me up and so they did give me some lasix to help flush it out. Me and the little potty are quite good friends. The nausea is manageable, but I have stopped eating much of anything after getting sick once earlier today.

Well, this has been a pretty boring post, but thought you all might want to know I am ok. My maternal cheerleader is doing great and reminds me this won't last forever!!

Here we go.....

It is that time again...chemo time. It is so much fun, I got a headache just thinking about it. But on the bright side....I'm praying it is the last cycle I get! So it is 3:00 pm and I am in my hospital room with the pre-chemo IV fluids flowing. It is hard to believe that a little over eight hours ago I was in Virginia kissing Brant and the kiddos good-bye. Katie gave me one of her favorite stuffed animals to keep me from being lonely and Chris gave me a giant hug that didn't seem to end!

Travel and hospital admitting went smoothly this morning and I am in my new home at Sloan Kettering for the next 4-5 weeks. How long depends on how quickly my blood counts recover......hmmmm......I think we had this issue last time..... But I have decided to try having less expectations about how the treatment will feel or how long it will last. Instead, I'll just take it each day as it comes. Speaking of days, today is Day -6. Everything is counted from the day I get my stem cells transfused which will be Day 0. So if my chemo stays on track, I will get stem cells next Wednesday.

We are getting unpacked and settled into my room. It is a large room with a nice view to the east. There is a convertible sofa for mom or Brant to sleep on and lots of built in shelving and cabinet space. Most things, including the flooring, are done in wood which makes the room feel friendlier than your average hospital room. I have a computer with internet as well as a TV w/DVD & VCR. They just remodeled this floor less than two years ago, and they did it knowing that patients are here (often confined to their rooms) for long strecthes of time. We will try to make the most of it.

Thanks for taking the time to read my blog. This site has been very helpful for me as I go thru this process. I love feeling connected to everyone, and it really helps me stay positive.

PS - It took over two hours to get this posted because I kept having to do my patient history and be examined by each group of staff - the nurse, the doctor, the nurse practioner. They all ask and do about the same thing so I am feeling like a broken record!!! But it is now about 5pm and I have been cleared to start chemo....my cocktail should be arriving any minute now!

Time Flies

I can't believe I am heading back to New York tomorrow. It would be nice to stick around a few more weeks, but we might as well get on with it! Plus, we don't want to give the cancer any time to show back up before blasting my system with high dose chemo and the stem cell transplant. I'd like to make sure it is gone for a long, long, long time (say - forever!). I had a weird pain in my neck over the weekend and went to see Dr. McGaughey Monday. He sent me on Tuesday for an evaluation of my catheter - they inject dye into the catheter and take an x-ray type picture. There was some concern that a small clot had formed or else the catheter tube was out of position. Everything checked out fine, so my catheter did not need to be removed. I have a real love-hate relationship with the thing, but I am definitely glad that it is in place and ready to be used tomorrow. No IV sticks!!!

The time at home has been great, but the last few days have been so very sad as we watched the horrible events unfold at Virginia Tech. Since Brant and I are both alumni, it hurts deeply to see this happen to the wonderful students and faculty at our alma mater. There just aren't words to express the sadness. Please keep all of the Hokie community, especially the families who lost loved ones, in your prayers. We ask God to help guide the healing process so that it may eventually leave all those impacted stronger in their living and their faith. And if you would like, this Friday is Orange and Maroon Day, please wear one of these Virginia Tech colors to show your support.

Our flight leaves tomorrow morning and I will need to make it to the clinic to see Dr. Moskowitz before noon. Let's hope the weather and air traffic controllers cooperate! I still have quite a bit left on my "to-do" list around here, not to mention packing. So it will be my typical last minute, late night scramble. The kids are much sadder to say good-bye this time - they know better what it means. We are focusing on the summer and having fun once it is all over. Please pray that the time goes quickly for them so they don't miss mommy too much. Hopefully school and baseball will keep them busy!

Thanks for all of the continued support. I will try to check in tomorrow evening - hopefully from my hospital room after being admitted.

Fun on R&R

Just wanted to check in and let you all know that I am enjoying my time at home. The kids are on Spring Break and Brant took the week off so we are having a great time together. I am still getting lots of rest (hitting the couch every few hours or so!) and Brant has been doing all of the Spring yard work. It really makes me tired to watch him :) We've been to the movies and library, but mostly we are just hanging out around the house which is sooooo nice!!

We had a wonderful Easter together. It was a real blessing to be home for the holiday and be able to go to churh together. We certainly had a lot of blessings to celebrate. Here is a rare picture of the four of us together.

I will head back to NY with mom next Thursday the 19th. I will see the doctor that morning and hopefully be admitted that afternoon to start chemo. It is hard not thinking about going thru 5 days of chemo, but I have a whole week left at home to enjoy first. This trip to NY will probably be at least five weeks long. Brant is planning to spend one of the weeks up there with me this time around. I will be in the hospital almost the whole time, which won't be as nice as the apartment I'm sure. I'll have nurses instead of doormen!

Thanks for all of the love and support we have received. I was greeted home with cards and care packages that were all so nice. And Brant really appreciated the meals that were dropped off while I was gone. This has all meant so much to our family!!!

Home Sweet Home!!

I can't believe I am finally home and having fun around the house with the kids. Brant greeted me with roses late last night at the train station and the kids brought me a candy bar tied to a balloon - it doesn't get any better than that!!!

I made it thru 5 days of collection and managed to get a total of 5.9 million stem cells (another 1.8 Thurs and 1.4 Friday). I thought about demanding a recount since I really wanted to make the 6.0 million target, but instead I’m trying to remember how awesome it is to get as many as I did. This time last week I was concerned about being in the 10% of folks that just don’t seem to be able to produce stem cells in their blood stream for collection. I did not want my cells collected thru a bone marrow procedure – painful!!!

We had reservations yesterday for the 2pm Amtrak train leaving New York, and it was so sweet how all of the staff members in the donor room were intent on us making that train. I had to get a blood transfusion due to low red blood cell count, and that added an hour to the procedure. But we made it to Penn Station with time to spare. Here's a big THANK–YOU to Joan, Kelly, Bernadette, Jane, Eilleen, Dr. Reich and everyone else there rooting for us!!!

Have a great holiday weekend everyone! I know that we will enjoy our time together. Of course, watching the snow cover our patio furniture isn't exactly normal for Easter weekend, but we will still have fun indoors!

More Stem Cells....

For those of you counting back at home......I collected another 800,000 yesterday and 1.2 million today, for a running total of 2.7 million cells!! I realize I will be here collecting thru Friday and still probably won't hit the 6.0 million target, but my hope is that I will produce enough cells that they let me go home for a week and then proceed to the transplant step. The other good news is that my platelets are up into the 40,000 range now and I have not had any transfusions since Sunday.

Not much else to report otherwise. We spend a big chunk of each day in the donor room where we are greeted like staff members since we have been there so much. Just like everywhere else in the hospital, the donor room doctor, nurses, and other staff are great to be around - friendly, attentive, and very efficient. Mom has been out on a few "outings" while I have been on the collection machine. She really enjoys getting around on those buses and people watching!

700,000

Yes, that is how many of those little stem cells they found today. It wasn't as high as I had hoped, but I am SOOO happy that we have gotten started. The actual collection process is done by hooking my two catheter tubes up to a leukopheresis machine. The blood goes out one tube, goes thru the machine, and then back into me thru the other tube. The machine spins my blood and separates out the white cells into a collection bag. The actual machine didn't look as high tech as I would have thought. It had manual knobs, lots of visible tubing, and at times whirred like a pinball machine getting ready to tilt. But I was assured it was a very reliable piece of equipment that works like a charm. At the end of the process, a lady arrived with her igloo cooler to carry my precious cargo up to lab where the stem cells were separated and counted.

I did ok on the machine. The four hour process left me a little tingly and weak, but nothing a nap back at the apartment couldn't fix. The process pulls lots of calcium out of your bloodstream so I am eating my cheese and drinking milk in preparation for tomorrow. They give you Tums during the process to control any tingling and chills....I'd prefer to eat a Stomboli tonight and have a little ice cream for dessert!

I will go back for a maximum of four more days unless I get to six million stem cells first. Over/under on that bet anyone?? My white blood cell count rose to around 9.0 today (I never saw the final count). And my platelets jumped to 27,000, so no transfusions. Yeah! David Rice and Dr. Reich (donor room doctor) decided to hold off on giving me Ruth's platelets since my platelets had improved so much. If I take Ruth's platelets, she will not be able to be a stem cell donor should I ever need her in the future. So they don't want to take that option away from me unless it is an absolute necessity.

As for the platelet issue, they confirmed today that I have HLA antibodies in my system, which basically means I am rejecting the "foreign" platelets from the transfusions. I developed these antibodies either as a reaction to a previous transfusion or from being pregnant with one of the kids. It sounds like they will use the results of my HLA type to find a donor that is a close enough match that my system won't reject the platelets. They have a few weeks before my transplant to figure it all out. But it sounds like my bloodwork is coming out of the woods from this last chemo round which is very encouraging!

Thanks once again for all of the continued prayers. I know that they have made a difference.

Sister, Sister......

.....to the rescue. It was certainly a nice pick-us-up to have Ruth in town for a quick visit this weekend after not being able to travel home ourselves. She arrived with an IPOD shuffle on loan to me, pre-loaded with upbeat and inspirational music. It has been nice during my long hours in the transfusion chair. We had a couple of good meals together and Ruth was able to make a brief sightseeing tour (she had to go see the Apple store on 5th Ave) while Mom and I were at the hospital today for what has become my daily transfusion of platelets.

Ruth was able to donate platelets yesterday, but Mom could not because she has been to Honduras within the last year and it is considered a 3rd world country. It will take a few days to process Ruth's platelets and to find out if I can use them. It appears that my body is resistant to platelet transfusions - it just spits them back out of my system and my counts do not go up. Platelets are the cells that cause clotting and not having enough can result is serious bleeding. The platelet issue will certainly be a topic of discussion with the medical team this week, especially in terms of how it will be handled during the high dose chemo for my transplant.

On the bright side, my platelets rose from 8,000 yesterday to 12,000 today. I still have to get transfusions below 20,000 but at least I made it above 10,000. And my white blood cells have started to ramp up - they went from 2.3 Fri, to 3.3 Sat, and 6.0 today! Woo hoo! Maybe tomorrow I will hit 10! Normal range for white cells is 4.0 - 10.0, but it is common for people getting Neupogen to get up into the 70's! Hopefully I will be able to go on the collection machine tomorrow and there will be some stem cells floating around in the mix. I am so thankful for this positive movement after how bleak things felt on Friday.

I'll leave you with a picture of us women and the tulips that Ruth got me while out walking today (fresh flowers are for sale EVERYWHERE in New York). Since my white count is in normal range again, the infection patrol agent (Mom) has been able to simmer down and fresh flowers were allowed into the apartment.