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.