Day +14

My counts today:

Platelets - 7K
White - 1110
ANC - 910
Red - 28.7

So they are going to attempt to send me home again today. I need a platelet transfusion; nothing new I have had almost 1 a day in here. They are sending me home with some antibiotics they will teach me how to administer myself so I don't have to hang out here. My doctor is so cool. I said we just need to give her the chance to get out of here! I agree because if not something could always pop up in this place that can make me stay.

I am excited but not getting my hopes up until they change my caps and unhook me from this stupid pump. The kids still don't know and the rule is we say nothing until I am sitting at home.

Wish me luck.

Darn fevers

Well I managed to catch a fever and I am stuck here for at least another 48 hours. Nothing much more to say. I am down, my spirits are broken, and I hate the hospital.

Day +13

So it is official I am leaving. I probably won't actually get out of here until 2-3PM but then I am a free woman.

They are busy preparing my meds, I have to get a blood transfusion, and make my appointment for the in patient out patient center tomorrow. From this point forward I am monitored by the center on a daily basis for about 2 weeks. Although it sucks I have to come back every day at least I get to sleep at home and eat my own food.

After I am cleared from the center I am not sure how often I am seen but by then I should be well underway with radiation treatments and back up here daily.

I am so happy to be going home you can't imagine!

What to bring to the hospital

Since I know of one person reading my blog that is going in for his own transplant I thought I would jot down what is great to have during your stay in the “joint” (what I like to call hospitals):

Tons of PJ’s, socks, and undies. Sometimes your family members can’t get your laundry back to you quick and it sucks to run out of clean undies.

Towels – we all know how much hospital towels suck.

A blanket for your bed.

A pillow from home.

Slippers

Robe

All your usual bathroom gear. The hospital provides it but I have found their toothbrushes flimsy and after a couple of chemo stays they make we want to gag.

Food – as much as we know about hospital towels we all know about shitty hospital food.
I would bring your most benign comfort food that has gotten you through other chemo’s and mouth sores. Mine was yogurt, oatmeal, and cranberry juice.

Another thing about food – meet the dietician/nutritionist (or food police as I like to call them) and request special items be brought with your tray so your family doesn’t have to go shopping for you.

Pictures of your kids, family, dog – whatever to personalize your room.

To pass the time – I had to have my laptop, ipod, books, scrap booking gear, magazines. Whatever your hobby bring it along. I will warn you that anything with too much detail kind of gets difficult to concentrate on. Even though you might be feeling crappy try not to say no to visitors. It really helps pass the time.

To stay in touch with family – we bought web cams so I could see the kids at night. I also have my cell phone with me to keep in touch.

Wish I had flip-flops since the cleaning crew wasn’t always on top of their game.

Day +12

Tommorow should be the day. The doctor said this morning that if I don't get a fever then I am out of here on Monday. Pray for no fevers the rest of the night.

My mom came to see me today. I napped the majority of the day away. If I could just sleep these last 24 hours and wake up and be home I would be a happy camper.

Will hopefully post tommorow that I am home.

Day +11

My counts:

Platelets 13
White 260
Neutro 208
Red 26.8

Good news they are continuing to come up. My fever disappeared and they think it is from the growth factor shots. I have to be fever free for 48 hours and my neutro's up to 500. The doctor thinks I can be out of here on Monday.

We are not telling the kids in case I get another fever and things get delayed.

Dave and Dan stopped by with the kids this afternoon. I am reading a lot to pass the time; tv sucks especially when you get limited access cable.

My dad and Mercy are back at home in Arizona. Dave's mom is next for helping out with the kids.

I wonder when life will ever return to normal.........

Day +10

My counts are up today.

Platelets: 17
White: 120 (all neutrophils)
Red: 27.5

These are awesome and the doctors think I might get out of here on Monday. I did however spike a fever this evening and that might slow me down a bit. I am still not discouraged since this is all a lot sooner than I had anticipated.

All for now - I have the chills and it's hard to type.

Kids

Just a quick note - my dad and step mom brought up Alex today! It has been almost 2 weeks since I have seen him in person since he had a cold. It was a fabulous afternoon.

Dave is bringing Lee and Charlotte up tonight too. It's so great to see the kids - it boosts my spirits so much.

Here are some pictures of the kids Dave took for me the other night.

Day +9

My white counts and platelets dropped again. The doctor yesterday said I should expect the numbers to go under 50 again. He said the test isn't very accurate when the number gets low. If they had run the test 5 times yesterday they would have gotten 5 different results.
Hopefully they will begin to jump up soon. My doctor is only attending for one more week and he thinks we will be leaving around the same time; I sure hope so!

I had another platelet transfusion at 3 AM and broke out with hives. What a lovely start to the day. Had a headache and had to beg for Tylenol. They only want to give out oxycodone (sp?) here but that stuff makes me drowsy. Such a big ordeal for just a headache.

My mouth still sucks and I am living on yogurt and oatmeal.

My dad and stepmom leave tomorrow and then Louise is coming to help take care of the kids. After that my friend Michele helped us find someone to do kid duty on M/W/F. We just need to come up with T/TH. If not I think Dave will just have to go in late those days.

All for now.

Day +8

Something new to report! My counts are coming up a tiny bit.

Platelet: 15K
White: 90
Red: 30.6

It is all becuase of the transfusions and shots but I am still psyched that they are not below 50. I still don't have any neutrophils but they should be showing up soon. I am totally getting my hopes up that maybe I will get out of here a week from now. I shouldn't but I can't help it.

The mouth stuff still sucks and the doctor said once my counts really come back it will disapear. Let's hope so.

More tommorow.

Day +7

My white count is still below 50 so nothing new to report. The last platelet transfusion worked and my count is holding at 16K. If it drops below 10K then they give a transfusion. My reds are a little low and I think I will be getting a blood transfusion today.

I got this nifty new medicated mouth wash that totally numbs my mouth for a little bit. Enough to eat yogurt and have my juice without pain. The nurse this morning said some people get them so bad they can't even drink! I am feeling really lucky that I can still have my mushy food. I guess if could be worse.

Louise is coming up today and my mom tonight. Other than that I am just killing time.

Time keeps dragging on........everyone knows the rest of those lyrics....yep I am comparing this place to prison. Hopefully I will be set free soon. I miss the fresh air.

Day +6

I am posting late since I just didn't have the energy to post earlier today. My platelet count has dropped low and they gave me a platelet transfusion last night. That one did absolutely zip so they did another this afternoon. I am feeling a little better but still worn out.

This entire mouth sore thing is the pits. Anyone with suggestions on soft food that doesn't have to be reheated please send it. I am surviving on juice and yogurt right now. My nauseous is gone so I have an appetite but just can't eat because of these sores.

The new doctor on attending is fabulous. A quick explanation of how the doctor thing works around here. There is an attending (on typically for 1 month), a fellow, and an intern that see me. The attending is the doctor that is most senior and he/she (haven't seen a she yet) is typically a big research guru. The fellow is someone that is going to become an oncologist doctor and the intern is fresh from med school. The interns aren't necessarily going to stay in the oncology field they are just doing a rotation here for experience. They assign the intern to go around to every one's room first to gather the latest info in the morning. Then the entire team does their round and visit me each day. The attending that was assigned to this month is having a baby so I have had a lot filling in for her. I am on my third attending and I think last before I go home but we will see. This guy is great because he comes back after they do the rounds and sits and talks to you personally. The nurses say all the patients love him and I can see why. I asked him if my odds were good to get rid of this cancer with the transplant. He reminded me not to get ahead of myself and focus on getting better and out of here so I can have the radiation. Something Dave reminds me of all the time too.

All for right now. They delivered dinner and I am going to try to eat.

Day + 5

My dad and stepmom are in town this week to take care of the kids. They stopped by the hospital today with Lee and Dave. It was really nice to see them. I love weekends because so many visitors come.

The entire mouth sore thing sucks. The pain comes and goes but it is a lot worse in the middle of the night and in the morning. The pain is screwing with my one good meal of the day; breakfast. I bank of the fact that the food is decent (how can you screw up cereal) but these sores are limiting my menu choices. Yogurt is the best but that only comes if the nutritionist remembers to put in the special order. I need to ask my mom to bring up my own supply for the fridge.

I started the shots to help bring my counts back up. Same shots I had to administer to myself before coming into the hospital and the same ones my oncologist gave me. Nothing new, they sting, they always will, and I just have to grin and bear it. Go figure the shots take a long time to work on me. I guess I need to ask how long I get them for because if they are waiting on a reaction from me this will be a long process.

My counts are still the same so nothing new to report. I am tired....what's new. I often wonder when I will "catch" up on my sleep. I am in such a deficit from the kids, pregnancy, chemo, and now the transplant. I have said to many people if they could just knock me out for the entire experience and wake me up on the end I would sign up instantly.

Day + 4

So today was a busy day.....my mom, Dave, the kids (minus Alex), and Paul & Nikki all came to visit. It was so great to see everyone. I breaks up the boredom of this place like you wouldn't believe.

My counts are as follows

Platelet: 55
White: less than 50
Red: 28.7

To explain the white count; I guess the lab only reports that my counts are below 50 they don't actually give us that they are at 0. My nurse said it's a new thing around here and they used to report lower numbers. So I could be anywhere between 0-49 I suppose.

Also I don't know if I explained the overall process that well but the purpose the the Stem Cell Transplant is to give those very high doses of chemotherapy that I got when I first checked in. That high does of chemo is what hopefully killed my cancer. In the meantime since it is so lethal it kills off everything else in my bone marrow. One of my friends up here says it's like peeing out your bone marrow after the chemo. They give us so much hydration I am constantly peeing.

After the chemo annihilates everything they give me my own stem cells to rescue my immune system. So hitting 0 is kind of like the chemo doing it's job and now hopefully my stem cells will start to kick in and reproduce white blood cells.

I hope that helps explain and it is accurate. There are a ton of sites to look it up if your really into the entire process.

I am still holding a very conservative estimate for my release date. I don't want to get the kids hope up that I will be out of here any sooner. We did that once when I got admitted for a fever back in the fall and it tore them up not knowing when I would be home. I am hoping this way I might get out earlier and pleasantly suprise them.

Thanks to everyone for posting comments - I read them all daily.

Day +3

Good morning everyone. I will start posting my counts daily since I get several questions about them.....

Today my counts are the following:
Platelet 84
White 70
Red 28.7

My white counts still have to hit 0 essentially before I have bottomed out. I imagine 0 will be tomorrow. Then my counts will start to slowly rebuild so I can be discharged. They anticipate it taking until day + 17 or + 20. I will start to get shots on Sunday to assist my white blood count.

To get out of here my neutrophil counts have to be at 500. I think they run the test for them on Mon. & Wed.

I am feeling worn out and sleeping a lot, reading, and watching tv. I need to get out and walk today since I didn't do it yesterday; just too worn out.

I got to see the kids on our new nifty web cam last night. Especially cool to see Alex whom I haven't seen in awhile since he and my sister are hanging onto a cold. We are counting shabbats (Fridays) so the kids can understand how much time needs to pass until I come home. This will be the 2nd shabbat and I am hoping only 2 more to go. Lee wants me home yesterday of course but what can I do.

Day+ 2

Sorry for posting so late. I was sleeping away most the morning. My white blood counts are getting pretty low and I am wiped out.

Enjoyed seeing my mom last night and she brought up my Aunt Linda for a visit.

I am crazy tired and will try to write more tomorrow.

Day +1

So they gave me back my stem cells and it was rather uneventful. Kinda of like just another bag of stuff they are dripping into me. Took only about 30 minutes.

My counts are heading down but slowly. They should drastically drop the next couple of days and then we begin the count upwards so I can get out of this place. They keep warning me about mouth sores and I guess my mouth is showing symptoms of it but I don't feel any pain yet.

I continue to shower, walk, try to eat, stay busy, and sleep every day. Hopefully doing these things will get me out of here faster than the average joe.

The food police stopped buy this morning and said I am not eating enough calories. I think I dropped like 5 lbs. I really don't know what they expect when your diet is filled with hospital food. The hospital near my house I can absolutely not eat at anymore since I was admitted like 4 times. And this place is quickly falling into that category. Thankfully mom is bringing up dinner tonight so I have something good to eat.

Lee and Charlotte visited last night - fabulous! My nurse was so impressed with Lee's fascination and questions about my pump. I need to get him exposed to other things than hospitals. Or maybe he will become a doctor and take care of Dave and I in our old age.

Day 0

So today is the day I get my stem cells back. My nurse thinks around 1-3 PM. I think she also said they have several bags - I think it is good news that they got so much.

A lot of people rename this their new birthday and go through a lot of anticipation around it. I didn't have that much; I thought getting through the chemo was a bigger deal. I think I will hang onto my original birthday. I think my mom deserves the date since she went through 24 hours of labor. But I will remember today and this entire experience forever.

I was remembering our trip to Chincoteague last night right before Alex was born. We had so much fun with the kids. It was a lot more carefree - we didn't even think to really worry about a stem cell transplant and all this crap we are going through. Every part of me wants to return to that more carefree feeling. I want to be back in that spot when all I was worried about was getting too much radiation. I want to have the kids to have their mom back, have fun again, and not have to worry about their mommy getting better.

I will get there again - I am determined to get better.

Day -1

Last day of cytoxin and I am happy to see it go. Hopefully this will be the end of chemo forever for me. Tomorrow I get my stem cells back. They say it's pretty uneventful despite the smell. A mixture of creamed corn and garlic.

My counts are still high but should be dropping in the next couple of days.

I am riding an emotional roller coaster more than anything. The hospital pretty much sucks, I miss Dave, the kids, and my family. Hopefully I can get out of here fast and back home where I belong.

Day-2

So last night was rough and I am just now in the world of the living. I ran a fever, got no sleep, then the chemo came on. I keep getting these crazy sinus problems - which they say are normal. It feels like your sinuses are burning. They finally found the right pain medication and I got a couple hours of sleep this morning.

My doctors are not worried about my fevers. They suspect it is my white blood cells dying. I don't know why mine have to be so melodramatic about it. Whenever you get a fever in the hospital as a chemo patient they have to run blood cultures from my catheter and then poke my arm to make sure it's not an infection in the line of the catheter. This all takes place around 2 AM and I can't get any Tylenol until the nurse is through with the cultures. So I am praying my fever doesn't return this evening.

Good news is tonight is my last night of chemo!!!!!!!!!!!

I don't know how bad it gets after they re infuse my stem cells but I will just be happy to be done with cytoxin.

Also realized I was numbering my days all wrong today is -2. Monday was -8 and you count down to 0; then back up again. Hey I never claimed to be the swiftest with numbers.


Funny - all I asked for for breakfast was Cheerios w/milk. I got a full fledged bacon and egg breakfast with coffee cake and 2 juices. I think the kitchen feels like I should be eating more.
HZ

Day -3

Another round of cytoxin down - 2 more to go and then hopefully I am done with chemo forever. This stuff is getting pretty wicked so I won't write long. I feel like I am moving in a fog and my mind is mush. I also gave me some crazy nightmares.

I doubt I will be up for scrap booking today. Probably watch a lot of mind numbing tv to pass the time.

Day -4

It's funny how the nurses and doctors ask you what you do - a spot on their forms to check off. I always pause now. I feel like being sick and beating this cancer is my full time job these days. I do tell them what I did do and hope to return to but it all seem so far away sometimes. When I sit back and think I will have been dealing with this for almost a year - it blows my mind.

So I began the cytoxin drip today, well actually last night around 3 AM begins all the pre meds then they actually hang the chemo at 6 AM. Next the doctor will come in and remind me to get up and about. I should remind him the nurses had me up half the night peeing and popping pills.

Overall I just feel like a truck ran me over - tired. Most likely all that fun in the early hours with my nurse. Still no puking and I am happy as a clam about that.

Dave, Lee, and Charlotte came up for a quick visit last night. I was wonderful to see them and hug them. They made me some artwork for my wall and I have proudly put it up. It reminds me of home; looking at the fridge.

I just keep praying to god that this transplant works. The little z's need me.

Day -5

So today is the last day of the Busulfan. They will actually give me a 4 hour break in between the two drugs - so nice of them. I haven't had any big side effects. Just sleeping from all the pre meds, I had to get some blood since my red counts are down, and that involves benodryl since I break out in hives when I get a transfusion. I think I passed out right after Dave left with Alex.

It was great seeing Alex. He was in such a good mood smiling and laughing. I think my appearance threw him off a bit since I have to wear a mask but Dave said he could still tell I was mommy.

Tomorrow I start the cytoxin and I am not looking forward to it one bit. This drug was apart of my ICE regiment. I hope it was not the one that made me sick. The part that sucks the most is I will be hooked up to the pump until the day I check out of here. I plan to take a stroll around the hospital today since it's my last day of freedom.

Since the rest of the chemo is pretty intense please call Dave or myself if you plan to visit over the weekend. I wouldn't be much company if I am sick the entire time.


A funny - I ordered cheerios but got rice crispies, asked for milk but got orange juice, wanted a banana but go applesauce. Only the English muffin was right. Every meal is a mystery meal in this place!

The what's next and what if's

So I am praying that this stem cell transplant (SCT) kicks my cancer into remission. However if it doesn't I still do have options. I have found that it's better to keep having options - when those run out that's when you get THE TALK from the doctors.

Once I complete the SCT I will then have radiation treatments. Either up here or at Georgetown. I have not met with the radiation oncologist yet but from what I read online it looks like they typically sign you up for 6 week. Another question is whether or not I will have involved field or full mantel radiation. Since we found out the disease did in fact spread to nodes in my lungs, armpits, and neck I have a feeling they will want to do full mantel.

After both the SCT and radiation is complete then they will do another PET Scan to see if anything esle lights up. I can only hope for the best, pray, and keep a positive attitude that this will be the end of the road for me. Should be sometime in April or May.

If not, and my persistent little disease decides to hang around we do have other options. My oncologist recommends I do a mini transplant. My sister is a half match and could actually harvest her cells and give them to me. It's similar to the SCT but I wouldn't receive my own cells.
If we do have to start looking at the mini option I think we will probably look elsewhere for 2nd opinion just to make sure. Most likely consult with NIH again but probably expand to Sloan in NYC and MD Anderson in TX.

Day -6

Rather uneventful so far. I am still taking the chemo and not experiencing any side effects; thank god. Leland is sick so Dave couldn't bring them up last night for a visit. Hopefully everyone will be really healthy soon so we can see each other. The hospital did give us videophones so we can talk/watch one another whenever we need to. This is going to force us to buy a line at the house so we will publish a home number soon.

The doctors should be around soon. It's just like those medical shows; a group of interns, residents, fellows, and attending walk in, present my case, ask if I have any questions then move on. I really don't have any questions right now so it's a pretty quick visit. I guess once things get a bit more dicey I will be more in tune to what they are saying.

The meals are the funniest. You fill out a menu for the entire day. It gets whisked away somewhere to fill the order. But what comes back is a complete surprise. Yesterday for breakfast I asked for cereal and a muffin but got cereal and Texas French toast. For dinner I got meatloaf and I am positive I didn't order that - too risky.

I will take my walk later, do some scrap booking, nap, and read. Just counting down the days.

Day -7

So they count the days differently from what I can tell. All the chemo days are negative days, my reinfusion of cells is day 0, then I begin to count positively after that. There will be a total of 8 chemo days: 4 days of Busulfan and then 4 days of Cytoxan.

So I am on day - 2 of Busulfan. In conjunction with the chemo, they give me plenty of anti nausea and anti seizure meds (a side effect of Busulfan are seziures). Side note about the actual pills they give you; there are 4 of them at a time but each one is a capsule with like 5 pills in it. So it's like taking 20 pills to get the dose. I have to pop all these pills plus my pre meds every 4-5 hours a day. All in all the medicine makes me tired an a little light headed.

Staff here is great but I can never get used to them coming in around the clock to take blood, give me pills, check my vitals. So much for Dave being jealous of me getting full nights sleep. It isn't happening here.

The food - well let me say I have had two hospital meals and that is already two too many. They are strict about the temperature of food brought in from home....I need to figure it out so I can import my mom's home cooked meals. Good news is they don't automatically put my on the neutropenic diet. I can enjoy fruits and salads!

It is the little things that can just change your entire day- mine is a nice green apple.

Dave plans to bring the kids by tonight for a visit. I am excited to see them and happy they will be able to visualize where mommy is for the next month.

Lee's birthday

I forgot to thank everyone for Lee's wonderful gifts at his big boy 5 year old party. He requested a shark theme and Louise (my mother in law) was gracious enough to go along with the party decor. Here are some pictures othe guests of honor. My sister also suprised Lee with a snake birthday cake in the shape of the number 5.

I think he had a wonderful day and I was so happy to be there for him.

Of course there had to be much talk about Charlotte's upcoming birthday and she has already picked out the cake. Pink castle cake for her barbie party at grandmas pool. I guess she may have inherited my love for planning.

Thanks again to everyone that helped us celebrate Lee's birthday.

Check in day -8

I had a tearful morning saying goodbye to the kids. I realize this is all for the best....so I will have many more years with them but it is still hard and pretty much sucks.

Dave took the day off and is helping me settle in on my first day. He bought me my own broadband card so I am connected during my stay. Life would be hard if I didn't have Internet.

I start my chemo (orally) tonight at 5 PM. Sounds like they do several tests after the first dose to make sure they have it right. I do 4 days of the oral chemo then 4 days of the drip. From what I have read the pills aren't that bad. It is the drip that sucks. However I have had the chemo that they drip in as a part of ICE so hopefully I will fair okay. As long as I can avoid throwing up I am a happy camper.

I will continue to post daily unless I am not feeling well

Fever and night before check in

I went up to Hopkins yesterday (Saturday) for my post operative check up. My surgical sites are fine and I am as sore as to be expected. I was however running a fever and had to stay a bit longer to have some tests. Got home and Charlotte was running a fever too. So we both stayed in bed the rest of the day and kicked our fevers by the end of the night. We are all feeling better today and enjoying hanging out as a family.

Dave and Michele asked if I was nervous. I am not nervous about the procedures or hospital. I am just sad to be away from the kids so long. Lee is out of sorts and will definitely take my departure the hardest. Hopefully Dave and can find time to bring them all up as much as possible.

I am praying this SCT is going to get rid of my mass once and for all.

Bone marrow harvest

I had a successful bone marrow harvest yesterday. They gave me a spinal (twice since the first one wasn't effective) and some twilight meds (also twice). These doctors need to start listening to me when I say it takes a lot of meds to put me out or numb me up. I will say after Alex I thought I would never have to go through a spinal again......never say never.

Good news is the doctor is 99% sure he got everything needed and did it in about an hour; half the normal time for the procedure.

I was very sore last night but doing better today. Thank god for pain killers. I am back to the hospital today for a post operative check. Then I am a free lady for the rest of the weekend.

Have a great weekend!

Schedule

To let everyone know I go up to the hospital today to sign consent forms and have some blood work. Tomorrow I will have the bone marrow biopsy under general anesthesia. Back on Saturday for a post operative check up. Finally I will check into the hospital at 12 noon on Monday.

My doctor said I should plan for a month's stay but I am hoping for 3 weeks. The kids know what's going on and I hope will fair fine during my stay in the hospital. My sister, Aunt Linda, and Dad will be in town these next 3 weeks helping Dave out.

I know a lot of people have asked if they can come visit me while I am in the hospital. All visitors must be 12 + and healthy. Healthy meaning not sick for the past week. I don't think I will be up for visitors the first week or so when they are giving me the chemo then stem cells. I will have my cell phone and suggest anyone call me or Dave first to see if I am up for visitors.

Similar neutropenic rules follow when my counts have been down; no flowers, fresh fruit, fresh veggies......the pits essentially.

Despite the notion of begin sick I am really happy to get this thing going!

Thank god for the New Year

My mom and I are back from the hospital with some good news for a change - my counts are up! This means I am finally ready for the bone marrow harvest (this Friday) and will be admitted on Monday for the high dose chemo. I was really nervous about today's counts and can't thank god enough for the great news. I prayed that I would just have the chance to go to transplant. I can face whatever these next few months bring and just needed the chance to have this treatment; without it my outlook was not that pretty.

So onward to the next step which is one more closer to getting better and beating this thing.

I think 2007 is going to be my year.