Not much new....

I was hoping to head home on the train this afternoon since it didn't seem my blood counts were going anywhere quickly and they aren't open for collection on Saturday. We knew it was a long shot but we bought our refundable tickets and were packed up just in case there was a green light to head out for a few days and be back Monday (or even Sunday if necessary). Unfortunately my platelets fell to 6,000 again so I couldn't go anywhere. They suspect that the transfusions I have received aren't a close enough match so they aren't "sticking" in my blood and instead are passing straight thru me. Today they took a blood sample and will HLA type me in order to find specific donors. In the meantime, my sister Ruth is flying up tomorrow to donate platelets and Mom will donate on Sunday. Hopefully these platelets will work better in my system since they are related donors and should have some genetic similarity. Today I got two units of platelets and was told to come in to the Urgent Care clinic each day this weekend to have my blood checked to see if I need any transfusions.

As you can imagine, it wan't my best day. I've had a splitting head ache that has kept me in bed most of the day. I am worried that things aren't going well, although Mom does remind me that this is "Day 3, Cancer Free". My little pillow that the Maddreys made me is so true these days. It says - "Trust Him - When darkest thoughts assail thee, when thy faith is small, when to simply trust Him, is the hardest thing of all." As most of you know, I do well when there is a plan. Right now I feel like I am barely treading water and not getting anywhere fast. It is definitely a challenging time and I find it hard to be positive. Please pray for me to strengthen my faith that this will all work out even though the "plan" isn't clear to me right now.

Brant has called me no less than three times today and is a great souce of strength. Opening day of baseball for the kids is tomorrow and he knows it is hard for me when I was so sure I would be at their games. But he is keeping things going down there and the kids really do seem happy although I know they miss me. Brant was headed out to the grocery store and Home Depot with them tonight in their "Heelys" Those wheeled shoes really have made the kids more interested in shopping outings!

Groundhog Day

The technician in the Donor Room said that I was reminding her of the movie Groundhog Day where each morning starts over as the same day repeating itself. Today for me was not much different. My WBC did "jump" up to 1.5, but no stem cells yet. And my platelets dropped back to 10,000 so it was off to the clinic for another transfusion. I think the blood bank is going to start charging me extra for hitting them up so hard this week. Since last Thursday I have had 4 units of blood and 3 units of platelets.

At my doctor's appointment Moskowitz did express some concern that my marrow wasn't responding well, although I am creeping back up in the right direction. If I can not begin collection by next Monday he said we will have to "regroup" on how to get stem cells for my transplant. Great..... He also said this will probably mean my transplant recovery will take longer than usual, so prepare myself for a longer hospital stay. Great.....

We walked back home (Mom says I stomped) which was a good energy release and gave me time to think. I have to keep reminding myself that although I feel "trapped" in NY, this will not last forever. And I have a lot of great things to be thankful for.....including a negative PET scan, a flexible place to stay, a great husband that is doing fine with the kids back in VA, and about a kazillion people praying and rooting for me. Walking thru the halls of Sloan Kettering each day I see the faces of so many people struggling with this terrible disease. I am reminded of just how blessed we have been with my situation. Homesickness is a minor problem in the grand scheme of things.

Still Waiting

First of all.......HAPPY 48th ANNIVERSARY MOM & DAD!!!!! I had really hoped to get mom home in time for them to celebrate together, but it didn't work out. They are definitely quite a pair....there is a country song by Tracy Byrd called Keeper of the Stars that makes me think of the two of them. Here are a few of the lyrics:

It was no accident me finding you
Someone had a hand in it
Long before we ever knew
Now I just can't believe you're in my life
Heaven's smilin' down on me
As I look at you tonight.

I tip my hat to the Keeper of the stars
He sure knew what He was doin'
When He joined these two hearts
I hold everything
When I hold you in my arms
I've got all I'll ever need
Thanks to the Keeper of the stars.

CONGRATULATIONS ON 48 GREAT YEARS MOM & DAD!!!!

Now back to the Quest for Stem Cells:
Both of our children were born about 10 days late, so I guess it is no surprise my body is taking extra time to make stem cells......I am just not a fast worker apparently!! My WBC crept up barely today, but was still under 1.o. My platelets were up to 24,000 which was a relief. But my red blood cell count dropped and my hemoglobin fell to 7.8 (normal is about 11.0 - 14.0). I wasn't surprised since I woke up dragging this morning. So it was back to the clinic, this time for two units of blood. It takes about 3 hours to transfuse two units, so I opted for the tranquilizer dart (IV form of Benadryl) and slept thru at least half of the process. The doctor said the reason my platelets and red blood cells are struggling is because the Neupogen tends to focus the bone marrow only on white blood cell production and it kinda forgets about making the other two types of cells.

We will head back to the collection room again tomorrow. At some point, my white blood cell count should shoot up quickly, and this is the best time to collect stem cells. They check daily so they won't miss it. I also have a check up with Dr. Moskowitz tomorrow.

Thanks for all the great emails and comments from my great news yesterday. We are so excited to have "the big picture" to be happy about while I struggle with this delay in getting home!

CANCER FREE!!!

We got the news today while walking in Central Park. David Rice (nurse practioner handling my care with Dr. Moskowitz) called to give me the news. My PET scan report came back with NO ACTIVITY and my CAT scan showed all of my bad lymph node sites decreased in size. I am ecstatic, and Mom and I stopped immediately to offer a prayer of thanks and then called both Brant and Dad.

This is a HUGE milestone in my journey and one that I had been praying would happen. The first two rounds of ICE chemo have wiped out all signs of the cancer. Studies have shown that people who enter the high dose chemo/stem cell tranplant step with no sign of cancer have much higher cure rates or at least much longer periods of remission. This is why we came to Sloan Kettering to be in this Phase II trial. The ICE chemo is a higher intensity than standard and they offer a yet-to-be-approved-for-Hodgkins GND chemo before transplant if your PET scan is still positive after the ICE chemo. I won't have to do the GND chemo because I am already PET negative!!!!

For those of you wondering, a CAT scan is a highly accurate scan of your insides - the pictures are slices, or cross sections, taken just millimeters apart. Imagine looking from your head down thru your body to your toes to get the idea of what a CAT scan picture looks like. They use contrast, iodine dye, to help differentiate tissue and see any abnormalities better. But with my type of Hodgkins, the lymph nodes often have scar tissue and may be enlarged but not cancerous. For a PET scan, they inject you with a radioactively tagged sugar substance after you have fasted for 6 hours. I even got a little card saying "Rachel Cox may emit small amounts of radiation for 24 hours". I guess this comes in handy if you are travelling thru security at an airport! Any active sites in your body absorb the sugar as energy and "glow". A special camera passes slowly (about 20 minutes lying in the tube) over your body and records a front view of your body. It is mostly dark with any "hot spots" lighting up. The PET scan does not have much detail, and can often glow for other things - like infection or inflammation. So the doctors use the anatomical detail of the CAT scan along with the "glowing" of the PET scan to decide if you have a cancerous spot. Although not 100% accurate (is anything??!!), this combo of scans has been very useful in lymphoma cancers.

OK....so back to today. This morning I went to collection and found out there are still no stem cells, but my WBC climbed from 0.4 to 0.8 which is the right direction. However, my platelets fell from 16,000 yesterday down to 6,000 today even though I had a transfusion yesterday. This is pretty critically low and I have started some nose bleeding along with bad bruising at my Neupogen injection sites. So it was back to outpatient clinic (yes, the nurse knows me by name) for another transfusion of platelets this morning. They give you Tylenol and Benadryl in case there is a reaction. Today I took my Benadryl as a tablet instead of thru the IV. The IV version knocks me out like tranquilizer dart and I feel like I could be on Animal Planet. While waiting, Mom took a break from her usual intellectual reading to check out some "high society drivel" magazine. She was glad to learn that it is "vulgar" to pour champagne all the way to the top of the glass. Important stuff to know. We will be back again tomorrow to try for those cells. I know they will show up eventually!

We took public transportation home today (got the all clear since my immunity is rebounding) which required a few blocks of walking. I have lost 10 lbs since my treatment started last month so I was glad to see the guy selling belts 2 for $5 on the sidewalk to help with my jeans. I feel like I have experienced New York now. Maybe tomorrow I will get one of those purses.... We also stopped in Children's Place just to look at clothes for the kids, and then found a nice courtyard bench to share my freebie PB&J box lunch from the clinic. Nothing like some good ol' Brisbin "schloss" dining. After a brief stop at the apt to relax, we headed out in the 78 degree sunshine to enjoy Central Park.....and that is when I got the call that started this whole blog post. The park was gorgeous and I took tons of pictures for my scrapbook "day in the park" spread that I can imagine doing before long. Sorry for the long post, but I hope you can share my excitement of the day. Here is a pic or two from the park:

Sharing the good news on the cell phone!! Are you sick of this hat yet? I am, but it is the only one I have for going out and a slight rash on my head has prevented the use of my wig.

The happy mom/nurse/cheerleader:

Scenes from around the park:

A view that only Richard and Bernadette can truly appreciate:

No Stem Cells Today

Apparently my white blood cells and stem cells haven't been keeping up with my blog. Otherwise, they would have known they were supposed to show up today!!! Aaaarghhh! I have places to go...... I am actually handling it ok. My WBC count was 0.4 and it needs to be above 3.o before collection can start in order to avoid infections. There were no CD34 cells (the stem cells) circulating yet, but I was assured they would show up very soon. I will go back to check tomorrow, but it may be Wednesday before collection can begin. I am still keeping my fingers crossed that I can come home Friday, but it definitely feels like a moving target.

My platelets were very low, and needed a transfusion to boost them back up. The doctor in the blood bank room walked my platelet order over by hand and negotiated a spot for me at the outpatient clinic. That enabled things to go quickly and me to keep my afternoon appointments for a CT scan and PET scan. I am not due to see the doctor until Thursday, so I don't know if I will have any results before then. Ah, the waiting game....

The weather was too cool yesterday to sit in the park. We found a nice little Mexican restaurant and enjoyed a late afternoon lunch (no crowds!) eating and people watching. The food was great and it was nice to be out. My fever has ended and I am feeling much better. So my cell count is definitely on the way back up.

Tick Tock Tick Tock

The days drag on and I think I have memorized the bricks on the building across the street that I see outside our window. So many of you have complimented me on having a great attitude and spirit, so I am ashamed to admit that I have been a bit....errr...grumpy? But I am under strict orders to laugh at least once a day, and Mom definitely enforces that rule and also allows no moping.

I have been struggling with a slight fever and a few other symptoms these last few days of no immunity. Hopefully my counts will start picking up and I will be out of the woods by Monday when they will start collecting my stem cells. I will also have a PET scan and CAT scan that day to see if the two rounds of chemo did their job. We are hoping for a complete remission of the cancer before the final transplant step. The anxiety of what they will see on the film is starting to creep into my head a little. It is hard not to worry as you approach these testing milestones.

Of interest.....my transfusion nurse the other day at the outpatient clinic was a "travel" nurse. This is where you sign up with an agency to spend several months as a contract nurse at locations of your choice around the country. She and her husband decided to take a little time to travel before he started grad school next fall. Manhattan is their first stop and they are going to Arizona next. Nurses are in such demand....they have some really cool programs to recruit them. Here at Sloan, I think they get the best of the best. My one RN on the floor had her BS from Georgetown. And there is a Nurse Practitioner over the regular nurse that you see on a daily basis as well. They do not skimp on staff.

Well, I had a two block walk today to get some air. If the weather cooperates tomorrow we may get a take-out sandwich and have lunch in Central Park. Then before you know it, Monday will be here and I will be busy with appointments and getting ready to come home hopefully by Thursday.

All Juiced Up

I woke up this morning very weak and blah, but excited to have a big outing to my doctor's appointment. We are finding out that despite a kazillion yellow cars driving on the roads, empty taxis aren't always there when you want them.

Dr. Moskowitz was his usual upbeat self. They checked me out and confirmed that my white blood cell count (immunity) is next to nothing. My red blood cells and hemoglobin were also low. Since these are the cells that carry around oxygen to your body, that is the reason I felt so wiped out. He sent me for two units of blood which took a LONG time to get (we got back to the apt. around 8pm) but I feel much better.

So here is my public service announcement - PLEASE DONATE BLOOD whenever you get the chance. I have used 3 units in the last week and it is such a lifesaver. Sure, it is a little inconvenient and the stick is no fun, but I guarantee that the people who receive your blood are enduring much worse. Besides, you get free juice and cookies and they really treat you like a hero!! (Which every blood donor is!)

I also had my dental check today. Because the transplant process will make you so vulnerable to infection, they check out your mouth before you undergo transplant to make sure there isn't any cause for problems. I checked out fine - no need to pull teeth!

I haven't said much about Sloan Kettering in my blog, but I have to tell you how awesome this place is. All of the staff is so well trained and professional. Everyone, from the reception desk thru to the nurses and doctors, treat you like you are the reason they are here. Which is obvious, but how many places can you think of that really have that kind of customer service? All of the processes and procedures here are geared towards treating you like a VIP, even if it isn't the most cost effective or efficient way to do things. It is like they always ask themselves - will this make it better or worse for our patients? I am so thankful we were able to come here. It really feels like the right place to be for my best chance at success.

Warning......Long Post

There isn’t much new to report, but I figured typing a lengthy blog would kill some time for me. And since a few of you may be wondering why I am sitting in an apartment doing nothing in NY, I thought I’d spend a moment explaining the medical side of things for anyone that may be interested.

But first….the news…. I have had some really good days, like yesterday, and some blah days, like Sunday and today. Most days I venture outside at least once to stretch the legs. Today is pretty cold and since I don’t feel good I am staying in. Mom decided to do a little cleaning, and I’ve been kicked out to the lobby until she’s done vacuuming.

I know I say it all the time, but I miss Brant and the kids terribly. Tomorrow is two weeks since I left home and it is by far the longest I have ever been away. I look at the picture of the three of them them constantly (my Valentine's gift from Brant). We talk daily and Brant is doing so awesome, he definitely gets the Superman award this year. He is juggling work and school and two baseball teams - he even helps coaching Chris' team. His mom is a great help and he says the days fly by with so much to do, which is such a blessing for them. He is so positive about this process and manages to lift my spirits every time we talk. I can't wait to get home.

Yesterday we went to the local branch library which was fun. As a non-resident, I couldn’t get a library card without paying $100, so we opted for a several items from the used book sale which were much more reasonable at total of $6.75! Later mom hit a Barnes & Noble (can you believe it!!) and bought Bookopoly (no Park Place Monopoly available) and an interesting book on New York.

Speaking of Mom and her outings, she did get a little cocky the other day and hopped on a bus headed in the wrong direction. Instead of getting off, she figured she would just “loop around” on it. Well, 20 minutes later the driver was saying “Last Stop”. She managed to make a transfer, see the UN, and make her way back home. She just said it was a cheap sightseeing tour!!

So for my Stem Cell 101…..It is frustrating to just be sitting here in NY when I feel like I could recuperate in Chesapeake. But the doctors prefer to keep me close during this recovery phase (in case of fever or complications which would require readmitting), and I would have to be back for stem cell collection next week anyway.

I have now completed two rounds of ICE chemotherapy, one back home and one in New York. The chemo drugs work by killing any cells that are dividing rapidly, which cancer cells typically are doing. Unfortunately, the body also has some regular cells, like hair follicles and the lining of your mouth, that are also dividing rapidly and get killed by the chemo. That is the reason for the unpleasant side effects. But the most important innocent bystanders that get killed are the rapidly dividing cells in your bone marrow that make all of your new blood cells. The amount of chemo given is limited by how much they can “damage” your bone marrow and still have it recover. This is called the toxicity limit.

In an effort to kill more cancer, Stem Cell Transplant was developed as an option to enable giving higher doses of chemo. In this scenario, they have figured out how to “trick” your body into making lots of the stem cells that will eventually become the new bone marrow cells. While these little guys are circulating in the blood for a few days, they can collect them in a process that is very similar to dialysis. They store the harvested stem cells for later use. Then they can give a dose of chemo that is so high that the bone marrow can’t recover. Once the chemo is over, the patient is given back their own stem cells (that were in cold storage) where they find their way back to the bone marrow and start making new blood cells.

Right now I am in the “tricking” my body phase. I finished chemo and it has damaged my bone marrow cells. As the regular blood cells start to die off, there aren’t any new cells to replace them because the bone marrow is still being repaired. This is what I keep referring to as my blood counts are dropping. Instead of just waiting for things to repair on their own, those clever scientists found a way to jump start the process. They isolated the hormone that your body naturally makes when it needs to start making new stem cells. They can genetically manufacture the hormone with some help from E. Coli (yuk!) and give it back to me in shots of Neupogen (the brand name). This shortens the period I will stay with low blood counts and also helps my body to overproduce stem cells.

So mom hits me with two shots each day of Neupogen and my body is working to crank out the new cells. My bones ache (think flu) while all of this is kicking in gear, but Tyelnol helps. Although the counts of white blood cells (and with them, my immunity to germs) are still dropping, the new stem cells that will eventually help make new white cells are ramping up. By Monday I should be able to go to collection and have the stem cells removed from my blood through a special dialysis type machine. The goal is to collect six million of them to save for my future transplant step. My white blood count should also be recovering by then.

Ok, so not that all of you wanted that much detail, but it was in my head and I thought I’d share. Tomorrow I have a doctor’s appointment just to check my blood counts and make sure everything is tracking well. I will post results of that tomorrow night.

More Pics

Not too much new to report from NY. I have felt a little worse the last few days compared to Saturday, but not horrible. I don't need my anti-nausea meds anymore, which is nice. Sleeping is still tough and the catheter is something to get used to, but all and all, not too bad. Mostly just missing home.

Today I went for a 4 block walk to get out. The bulbs peeking thru the snow in front of the building were inspiring - tough enough to hang in there and a reminder that Spring is coming!!!


Mom took a pic of me in the apartment to send to the kids, but since I couldn't get it to go thru the email (dial up issues!), I will post it here for them.

Happy St. Paddy's Day

It is a nice day in NYC, sunny and warmer and the snow is clearing out. I guess you can tell by the frequency of my posts that I am a) feeling better and b)lacking things to do!! Big news today, found out we do have cable (the cord had fallen out on the back of the TV) and so Mom and I can watch some NCAA tournament!

Today Mom switched gears from light duty to skilled nursing - she did my first dressing change on the catheter and gave me my two Neupogen shots. Both done like a seasoned nurse.

I convinced mom that today was a good day for an outing. The NYC St. Patrick's Day parade was only two blocks away. I promised if it was crowded or if I got tired we would go straight back. But the cool air felt great and the short walk to the parade was good exercise. It was easy to catch a view of the bagpipes and the green hair of the parade watchers.

Central Park is just on the other side of the street and it was pretty with snow and sledding kids and dogs (of course). I even bought an Irish hat for myself since I didn't have anything green:

After a little while at the parade we stopped at a cafe to split a corned beef Reuben sandwich - YUMMY!! We felt that we had done our best to honors mom's red-headed Casey heritage and went on back to the apartment. I thoroughly enjoyed my 1-1/2 hour outing and know that they will be more limited next week when my blood counts are lower.

Other than that it has just been hanging at the apartment. Mom did another pharmacy run today. She is quite a pro with the senior fare on the bus and walking the blocks. I'm a little nervous when she is out alone, but she keeps a cell phone and doesn't go far. Back in Virginia, Brant has finished a first work week in single dad style. He is doing great and I hope there is a spot for me when I get back home. :)

Connected!!

It was quite an effort, but like Scrat (squirrel from Ice Age) with his nut, I was not to be denied access to the internet. I looked for wireless near the window, wireless in the lobby, briefly thought about a bluetooth connection with my phone (no bluetooth on laptop) or buying one of those Verizon laptop internet cards (Yikes!! The price and service on that little doo-hicky!). In the end, it was simply my built in modem, a phone cord and the AOL free trial membership that got me to the 'net. Ohhh mmmmyyy gossshhhh, caaannn yyooouu saaay diiiiall uuppp bbbeee sllooow!!! But I'm here!

Well, I think I am doing pretty well for 1-1/2 days post-chemo. I can stay vertical for more than 30 minutes at times and have been eating a little, too. For those of you who don’t know, I crave the most bizarre foods. Dill pickles, grapefruit, and Taco Bell bean burritos to name a few. I've been cut off from the last item due to that little thing with the rats and the Taco Bell restaurant up here…. Mom does keep the good stuff going, too, like chicken noodle soup, jello, baked potatoes, etc. So my weird foods are just a bit here and there. I will probably have 2-3 more ugh days, then a few good, then back down again with the cell counts. But who knows, we are taking it one day at a time and just praying for an uneventful recovery again this time with no fevers or infections!!

Our apt is very cozy, but with no wireless connection or cable today we found ourselves writing letters, reading books and the paper, playing games and CDs on my laptop, and putting together puzzles. Obviously, the quest for internet has kept me occupied and my mind off of chemo. Today it has been snowing and it is fun to watch Manhattan get a fine cover of white from our little window 15 floors up. I miss Brant and the kids, but we talk often and he sounds like several of you are helping him along. This stretch will be closer to three weeks instead of two like I had thought. Good thing he is tough!

I had to start my Neupogen shots today (two a day – yikes!!) that will stimulate my bone marrow to make lots of stem cells. I will continue the shots until I collect enough stem cells, which as of now is scheduled to start on March 25th. I can go home as soon as they collect enough. There was a problem getting the shots delivered to the apartment today (since mom will be giving those). So we had to brave the weather and go Sloan Kettering and get my shots in clinic. It wasn't too bad, and I was excited to get to go out….Mom would have preferred we stayed in with the weather…..oh well!!

Thanks for the emails and comments. I love staying connected to everyone.

Headin' Uptown

I am just about ready to be discharged and thought I would post since I don't know my internet status at the apt. I am very weak and ready to rest while NOT being hooked up to an IV pole. The rounds of chemo went well (no issues) and I have slept mostly since Wednesday. Luckily mom has a huge capacity to read and write letters since she had a lot of time to kill. I look forward to posting when I feel a little better.

Rachel

Hanging in There

I've got about 12 more hours of chemo to go for this second round of ICE and as you might imagine I feel pretty bad. Fortunately the meds keep me pretty well knocked out and I am just trying to sleep thru it. Mom is here to make sure I am comfortable as possible. I get a blood transfusion tonight which may help perk me up some.

Plans are to be discharged in the morning and then go recuperate at the apt nearby. Collection of stem cells will probably happen about 7 dats later.

Back On Track

Just a quick note to say I have been admitted (got back on the transplant floor). It took a while this morning waiting around, but my IV is flowing with fluids and chemo should be along shortly. No word as to whether I will get my catheter today, I may have to wait until tomorrow if radiology is backed up.

This morning mom checked us out of the Helmsley Medical Tower (a guest facility for people in town for medical care), and moved our stuff a few blocks away to a little apt that belongs to the cousin of a friend of mine from back home. I can't believe how fortunate we are to have something like this work out....what are the odds? We are so very grateful for this housing opportunity, it will make my recovery after chemo so much easier by having a nice place for mom and I to stay. I wish I were done and we were there now!! :)

The delay in treatment was frustrating, but we had a nice weekend. We ate at a few restaurants (had to make sure they weren't crowded and looked clean enough to meet with mom's approval). We also had a cup of coffee and people watched in Central Park, the weather was great. We saw every variety of dog and dog sweater imaginable. There were also lots of kids around which made me a little blue. But I talked with Brant and the kids last night and they sounded great - Dad has been keeping them busy having fun and I don't think they are missing me too badly. That is a relief.

Well, I better go and get ready for chemo. Hopefully we'll get this show on the road and I will be outta here before you know it.

Kicked Out

Yes, it is true; I was evicted from the hospital yesterday evening. My day Friday began around 9am at the hospital to get my blood checked in clinic. My platelets were at 51,000 which just barely met the minimum 50,000 mark. I was examined by the NP and a doctor filling in for Moskowitz since he was off site at a meeting. I was sent over to admitting where I got screened again (EKG, vitals, etc). The nurse started my IV then it was up to my room around 1 pm to wait for my turn with the radiology interventionists to install my catheter. While I was waiting I met my two nurses, went for a chest x-ray, and got settled into my room. I was admitted onto the transplant floor which has very strict infection precautions. The staff and room were both AWESOME. I will have to write more on that when I am actually in the hospital again.

So radiology was backed up and I was just sitting around. I had my chemo pre-meds started – a steroid, anti-nausea stuff, and fluids. Then around 5:30 pm, the doctor who is in charge of the floor comes into my room (with a gaggle of staff in tow). He starts checking me out and then begins to ask about Chris’ flu. Mom, being a nurse, knew this was a bad sign, but I was oblivious and happily described our past week at home with Chris being sick and me not coming down with it. Then the doctor said I could not have chemo since I had been around a documented case of flu the day before and it was just too risky. I was upset, frustrated, mad, etc….. You think they could have made this decision a LITTLE bit earlier in the day. But you just can’t argue with someone who is trying to make sure you survive getting blasted with chemo. And it was a blessing that the radiologists were backed up since I never got my catheter installed.

So we were bounced out onto the street (actually went back to the hotel) and will try again Monday to start chemo- assuming I don’t develop flu symptoms and my nasal swabs come back negative. I came back and called Brant in tears. He didn’t miss a beat in reminding me it is only a few extra days and I just needed to “roll with it”. He also pointed out that we have had faith all along that my treatment path would turn out as was best for me, so why now question the reason for this latest twist and turn??

Later that night I was thinking about the Bible passage I have been reading in my attempt to read the Bible in one year (New Years Resolution). It is when the Israelites are fleeing Egypt where they had been slaves. God is guiding their escape route by a pillar of cloud in the day and a pillar of fire at night for light. As they approach the Red Sea they can see the Egyptians with their best chariots pursuing them rapidly. So God moves the cloud to behind the Israelites to create a buffer between them and the Egyptians. Now if I were there, I would probably have been near the front of the line and saying “Great, now what!!?? We’ve got this big sea in front of us and our guide took off!!” Luckily I have Brant to turn me around and see the bigger picture. Sometimes God is there to lead us, sometimes he drops back to protect us. But he never leaves us.

Have a great weekend, we will be watching ACC basketball, taking walks around New York, and dutifully avoiding any germs!!

We Arrived!!

It was a several Kleenex morning leaving Brant and the kids. We survived as we tried to remember that this is but a brief moment in the big picture of our lives. Then it was off to the train station for a pleasant ride to New York. Amtrak was running a little behind, so the end of the trip dragged on...... But it has been a long time since I rode the train and I was impressed with how much room you have (not like an airplane!). They don’t have wireless on board yet, but I hear it is coming. We were stuck outside of Richmond for a little bit and I could pick up signal from some nearby condos. It is so nice of folks to not secure their networks!

It was good spending the day with mom – we will have several more, too. I am so blessed to have my own private duty nurse to bring along for my treatments in NY. It makes me kinda sad for our kids that I didn’t choose a career more useful to them – like being a teacher or a nurse. Oh well, one day they are going to want to buy a house and I can advise them as to whether there is good drainage – ha!

I also want to say thanks to so many people who have sent cards and goodies to us. Last night when I was packing up (very late!), I raided the various baskets and bags. I haven't had time (or been allowed) to get out to a store, but I found everything I needed in those packages. So I was well stocked with with an inspirational bag filled with reading material, note cards, pens, snacks, chocolate (essentials!), socks, kleenex, gum, even a little pillow and a knitted cap to keep my bald head warm (yes, sadly it is all gone.....). It makes me smile and think of you all when I look at each item and know where it came from. THANKS AGAIN!!

The plan is to have my collection catheter installed tomorrow (Friday). This is like a giant IV going into the larger veins in your upper chest area. They will use it to run my chemo in and then later next week to collect my stem cells out. Although I’m not crazy about having tubes hanging out my chest, it will be nice to avoid the IVs in my arm and the damage that is caused when you put chemo into those smaller veins. Hopefully this will mean no sticks during my hospital stay! I will also have labwork done to see if I am ready for Round 2 of ICE. I should start it Friday afternoon or Saturday. I'm not sure what the wireless situation will be at Sloan Kettering, but will post again when I am able.

Hair No More

So yesterday my hair started dropping out en masse. If you have a dog that sheds you might be able to appreciate this analogy.....it wasn't so much the shedding of hairs all over the place as it was the major clumps that you can pull out when a dog loses its undercoat. I know, I know......Yuk!! It kinda freaked me out. Luckily today I already had a friend lined up to cut my hair and give my wig a little trim. Brant almost went ahead and shaved it for me last night, but we decided to wait for the professional. The pics of the big day are below.

On the health side, I had my blood rechecked today, and although my white blood cells are rebounding well, my platelets fell further and I had to get the platelet transfusion today. It wasn't a big deal, it just took forever waiting on the platelets to arrive. They were irradiated which I guess required extra time. I teased with the nurse that I had probably made enough of my own platelets while waiting and should be able to skip the transfusion. No such luck. So it looks like mom and I will take the train to NY on Thurs and start my treatment on Friday.

Brant's friends at work arranged for us to have four catered meals - THANKS!! They arrived today and we had fun sampling them all. Then we put the leftovers in individual containers and now have several meals in the freezer for Brant while he is doing the single dad thing over the next few weeks. I will miss the Brant and kids, but I am so happy that he will be here for the kids. It will be much easier on them in my absence to have Dad running the show. (even though grandparents are great fun, there's nothing like your own parent there to help things feel more normal).

All pictures were taken by Chris:

Before the scissors

Caught in action and the hair that got left behind

..

My new short "do"

The wig - I actually bought it in 2005 but never wore it since my hair just thinned a lot and I wore hats once it got too thin.

Test Reports

Ok...been a while since I posted, but it was an uneventful week holed up in the house trying to avoid germs. I wasn't in a vehicle for six straight days!!!! Very strange....... Thurs thru Sat were pretty "blah" days after feeling so great last Wed. I guess my blood counts dropped as predicted and it leaves you feeling washed out. I just spent my time laying around giving the couch an extra workout. And the new wireless connection in the house is pretty handy! I also had some difficulty sleeping which was aggravating. But on the bright side, we had a constant wave of yummy food flowing into the house, and I still have an appetite. (yes, it takes more than chemo to kill that apparently!). I really enjoyed visiting with some friends on Sat and Sunday. Regan brought by two giant cards from work that were so awesome. Thanks guys!!

On Sunday I woke up feeling MUCH better, and poor Chris woke up with a temperature around 103. We tried to keep our distance, but it was hard, and I figured I must be better since I had so much more energy. Today Grandma took Chris to the doctor who confirmed a case of flu. I went to my doc and found out my counts are still incredibly low - go figure. So it is back to being homebound for a few more days.

Dr. McGaughey wants me to get a platelet transfusion tomorrow, but I think David Rice (nurse practitioner at Sloan Kettering) is going to call in the morning to see if we can hold off another day since a transfusion will interfere with my ability to get chemo at the end of the week. Travel to NY on Wed is not definite now, and I found out I'm not supposed to be flying (oops, missed that little detail). I will get a lab recheck on Wed. and hopefully we can take the train to NY on Thurs. Staying flexible.....

Well, Katie is begging to use the laptop before her bedtime. Our main computer crashed last week so we are sharing tech toys this week..... I'll try to post a little more later.