day 14

this weekend started off pretty awesome. my mom was able to leave and get a few days off because alison usually comes here for the weekend. I was really excited about seeing alison and just spending time with her. it's weird to not spend almost everyday with her, but this is a part of coping. we talked about a lot of personal things and it felt good to be open and honest about things. Saturday I woke up and I was still feeling okay-I needed some transfusions-only platelets, my hemoglobin was great, it was an 11. so we watched a movie and i got my transfusion. Then Alison's parents stopped by, Chris came by forever, Jenna's parents and my dad also stopped by. It was like a parents convention in here. IT was really great that everyone came by. It seemed when almost everyone had left, I started to feel myself get hot. And then my face had been flushed---BOOM, i had a fever--it happened at 2 in the morning-alison and i were up all night-i was shaking chills for such a long time--it was uncontrollable. for a while, i just wanted to sweat but since it had not spked, it was not sweathing. I had all these ice packs on me although I was shivering because I was hot. The next morning-which was Sunday morning, my nurse said my WBC WAS .0, meaning I had NO white blood cells. As my doctor said, from someone who has leukemia in their induction, this mostl likely shows remission, but if you want to be a pilot for the u.s. navy than you might have some problems. Sunday morning, my hemoglobin had dropped from 11 to 8. The fever took a lot of my electrolytes out of me also. I had to get this potassium phosphate iv that dropped in for over 6 hours.

my temperature has gone up as far as 103.8, and it's been non-stop intensive tylenol, ice packs and this other medication.
I woke up this morning-and my counts had dropped quite a bit but a few decisions had been made. Also since Saturday, I have not had much sleep at night. Anyone who has stayed over with me, has been up all night dealing with the shakes, the trips to the bathroom and so on.

day 14 of a chemo round with an induction or my case, a reinduction therapy-day 14 means bone marrow biopsy.

but today was day 14. So first of all, i knew we needed to do a bone marrow biopsy. But it was decided that my triple lumen port would need to be taken out because it could be one of the reasons I was getting these high fevers. But before I needed to get it taken out and something else put back in, I would need two platelet transfusions-but this also would require me to keep my temperature down.
We did the bone marrow biopsy and that went well comparative to the other ones I've had lately.
Then my fever went up to 102.8 so even on all the tylenol they were giving me we still had to wait until it was under 100 degrees.
we got the first one in after about 2 hours but the other one for my temp to come down again took another 2 or 3 hours. We did not do it until 4pm. The nurse had to walk to special procedures with the bag of platelets. erica came by today and went down there with me. we saw melissa, an old nurse in the unit. she hit me and was like "what are you doing here??"
it is 11:15pm and i am getting my blood transfusion finally. because my temperature is low enough for them to do it.
i have had this head ache that i hope is just related to the fevers and the tiredness I'm enduring.
the doctor thinks that I will take 5 more days until my counts start to recover. It does seem so long when you are fevering. I hope removing the triple lumen will help a little bit. well it is almost 11:45 pm and I've had a rough day.
i love y'all.

day 8

today the chemo is really taking hold over me. the pooping and vomiting. i am tired quite a bit. today i needed to get a platelet transfusion-so that was benadryll and tylenol and steroids-i need to take steroids because i have had an allergic reaction to getting platelets...so it's been icky of going to the toilet-and then vomiting-and then needing ativan to help with the nausea. In about 7 days, I will be getting a bone marrow biopsy to see if I am back in remission. which hopefully I will be in.
I want to set up a fund raiser-auction/type fundraiser type thing.
I got news yesterday that I will be able to go in for my transplant-mid-late february. It is a 9 out of 10 match and there is a donor. So after the recovery of this, I will be shortly admitted to Hackensack.
I will get another round of very intensive chemotherapy. And then the transplant-I will be in the hospital for 3-5 weeks.
This is very good news. I am scared-and it will be hard-but I am going to beat this.

chemo,ativan...

it has been a few days since i have posted and that has due to my lack of wanting to be able to be in front of a computer-
i really don't want to talk on the phone either so the only way to see me sometimes is to actually come in and visit me.
i started chemo on tuesday evening-around 445pm. i have one chemo that starts at about 445pm and that goes for about an hour. an then another that goes on right after that and lasts for 6 hours--...then i have a 3 hour break-and the i get one that runs for 15 minutes...today is my fourth night. i have 2 more days. of this-it has been very nauseating-i have thrown up a few times but mostly have kept myself on ativan to keep myself up and to keep myself from throwing up.
i really want people to focus on fundraisers-and such. i need to do more bone marrow drives.
i will be here until my recovery-of my counts-so that will probably be at least three weeks.
i have had a few blood transfusions already-my counts are down...more. my hemoglobin is only around an 8 and my platelets around a 50. my wbc is falling which is typical becuase of the chemo-these counts will be at their lowest in about 10 days form when the chemo ends-so i will probably be getting tranfusions-everyday...for the next few weeks.
i just hope to not get an infection, but we will see what happens. if i avoid infection-i do not need to go on antiobiotics and that is very good-it is usually very difficult to avoid infection with such a low wbc but we will see what happens.

i love you all and thanks for your emails. i hope that people are checking out the blog to see what is going on with me.

thank you

back in the hospital

today was the first day back in the hospital. i was terrified.
it is past midnight right now and i should be trying to sleep but i thought that i would try to write an entry before falling asleep.
today was crazy.
my mom and i arrived at the hospital at 1pm. we had to wait in the admittance room where all the little kids were staring at me with my mask on. After 45 minutes of waiting and getting situated, I was told I would be on the 4th floor, which is great-because it is the bone marrow transplant unit and I know some of the nurses. IT is an intensive care floor and I am checked on quite often. As soon as I got up here, I had to fill out papers-and then I talked to the Dr. who had done a bone marrow biopsy on me before and he said we had all these things to do and might start chemo tonight.
That has not happened, we are starting tomorrow morning.
So then it was filling out papers, consenting blood forms, signing the bone marrow forms...
I had to be checked in by the nurse and also had to check me out. Then I had to get the blood pressure, weight, height, ...done. Then i had to get blood drawn. This was all around 2. Then as soon as all this was done, it was onto the bone marrow biopsy. This was quick but the doctor hit a nerve-and i had tingly-pins and needles like feeling all te way down the back of my leg to my foot-and i was terrified I could not walk. This was how it felt-and I was told I needed to lay on my back for an hour. It slowly started to go away but was still very tingly for a while.
After this, waiting and finishing more paper work-discussion some chemo-
I went down to special procedures to get a triple lumen portacath in my neck. There was talk of it being by my subclavical-but there is more risk in that-there is a possibility of doing something near the lung, and the soreness and pain can be worse. Cosmetically speaking, that might be nicer, because i have some iv looking things coming out of my neck, but it sounded more safe. And being that my counts are so low, I want to go for safety rather than looks. I was down there for about an hour. My mom came down with me but had to wait in the waiting room when I went into the surgery-or whatever it would be called.
SO finally, this was done at about 530pm. I had barelly eaten or drank anything all day. I had an English Muffin in the morning and then half of a bagel with nothing on it between the bone marrow biopsy and the putting in of the port.
I thought I was done because I needed a MUGA test (i think it's called ) and they decided they would wait until tomorrow to start the chemo. This test is to look at my heart and to see how the function is with pumpin because I have had chemo before. The place that does this test closed at 4:30 pm so they decided they would do that in the morning.
So I thought I was done...i was looking through my charts...asked my nurse for a copy of my blood results...and then as I was doing that, the attending physician Dr> harrison entered my room. He is amaazing...funny...and really knowledgeable. We had a really great conversation. I asked him about my doctor for my transplant...and to put it bluntly, he said he was the best doctorfor this in the united states...i was blown away. Dr. Rowley worked with the man that is sometimes credited for the first bone marrow transplant. It made me feel like all the decisions have been right ones.
So after our conversation. My mom was here too...we had a lot of laughs...it was nice...
My mom left to get some food-and I was going to order-and someone comes in and says they can take me for the MUGA. So i was brought down to this kinda weird room with this machine that looks like somewhere you would get like an MRI. and they injected something in me and we had to wait 15-20 minutes...then he put something else-like a dye that would connect to the red blood cells and let them see what was going on in my heart. HE had to inject some radiation into me, but not too much. He said getting an Xray causes more radiation. This lasted until about 8:00pm. I was so hungry and tired...and in pain...
I also have had to take 400 milligrams of diflucan (anti-fungal), another medication for my kidneys, a birth control pill (to stop period), acyclovir (anti-bacterial), percocet (for the pain, 5mg oxycodone/325 tylenol).
So tomorrow morning, I start the chemo-I have three different types-for 6 days. I will most likely be here until I recover my counts-so 3 weeks about...
I need to try to sleep.
My dad came over and hung out with us. Alison is coming tomorrow and then Jenna is coming wednesday...

I need to sleep. Goodnight-

the email i sent out tonight.

hello,
i hope everyone had a great holiday season and a happy new year. i feel that something was allowing me to get through 2005 and january 1st, my body felt so tired-of course i was up until 430 in the morning but it was this "sick" tired. i went to the doctor the following day-and sure enough my counts have dropped down a lot and after looking through a microscope at my blood, there were some cells that were looking leukemic-about 5%. This was enough for my doctor to call me today and after a conversation with my transplant doctor in hackensack and a transplant meeting with all the doctors at the Cancer Institute of New Jersey, they all agreed I should begin treatment. This treatment is a round of chemotherapy. On Monday or Tuesday, depending on when a bed is available, I will be admitted to Robert Wood Johnson in New Brunswick where I will get a 5-7 day treatment of chemotherapy. I will then be in the hospital and I could be in there anywhere from about a week and half to four weeks.
my doctor thinks that it is better to go into a transplant in remission and that is what we hoep to achieve with this. of course this will be very intensive chemotherapy. It is called reinduction.
Then after recovery from this, I will hopefully be ready to get the bone marrow transplant.
This will again require another round of chemo-intensive-as I have discussed before or if up on my blog and then the transplant.
So this news is not shocking but it kinda sucks.
However, i did receive some good news that they have found some donors that are matches. They are not perfect 10 out of 10 HLA typed matches, but 9 out of 10 and they say that is okay. THey have not identified one specific donor yet and said it would take at least four weeks. With the rapidness of leukemia, there is no way I would be able to just go into the chemo and then the transplant. My doctor said that people who are in remission do better with transplant and as much as I hate to agree because it requires me to feel like shit, I have thought this from the beginning. But if what I am looking for is a cure, I just have to fight it and deal.
Many things have been prepared for and I have been able to finish school for the semester. I chose to take a medical leave of absence so I have had about a week and a half off but I have also been waiting to start fighting this. My hemoglobin has dropped and that has been making me feel tired. I feel okay and it will hopefully make it easier to fight this and not the opposite where I feel more awful. But whatever it does, I will knife it.

So in an optimistic view, at least I am going into this chemo round knowing there is a donor for me. So after the recovery, I will be able to do the transplant.

------------------------------------------------------------
FAQS:
Q: I do not understand when you say there is now leukemia in your blood, where was it before?
A; In September, there was no evidence of "blasts" in my blood, there was only evidence, approx. 5% in my molecular structure. It was only during this certain test called FISH (don't ask me what that stands for-ask my doctor) that they were able to detect this. There has only been evidence of actual leukemia looking through a microscope with my blood in the past two weeks.

Q: Why do you feel so tireD? Does leukemia only affect your white blood cells?
A; Leukemia affects the whole bone marrow. Although the leukemia is created through the white cells and affects primarily the white cells, it starts in the bone marrow. Because it starts there, it starts to deter, not only white blood cells to be made to destroy infections, it also decreases my hemoglobin ( red blood cells-Hemoglobin transports oxygen from the lungs to the rest of the body, such as to the muscles, where it releases the oxygen load.) This leads to feeling tired, suppression of appetite, an increased heart rate, etc. A normal hemoglobin is between 12-15. Mine right now is at about a 10. That is okay but it can get a little below 7. And it is extremely tiring-and weak. Another type of cell that is made in the bone marrow are called platelets. Plateletes are minute, nonnucleated, disklike cytoplasmic body found in the blood plasma of mammals that is derived from a megakaryocyte and functions to promote blood clotting. The decrease in platelets lead to taking longer to heal. A normal range is from about 140,00 to 400,000. I have about 60,000-70,000. That is actually okay-right now. But after chemo they can go underneath 10,000, which can be very dangerous. It is very important not to fall or get hurt or cause any bleeding in the gums because my body would not be able to stop it. So the whole bone marrow is affected with leukemia.

Q: what is the process of chemotherapy like?
A: chemotherapy is different for everyone. But in the other times I have been through it, there is the week of getting treatment-Oh this is the process for leukemia. Please know that all cancers have different treatments and what people are able to do. For the type of leukemia I have it is mandatory to stay in the hospital during chemotherapy. After the chemo-it take a few days for my counts to go down. My WBC will usually go to a .2 or .1 which is very low so it is important to stay away from infection. Hemoglobin and platelets will also go down. Even though chemo is trying to kill the bad cells, since it is basically rat poision and doesn't know what it is killing, it also goes after good cells, so those are the cells that will hopefully come back. IN the past after the chemo it has taken about 2-3, even four weeks for the counts to come back to a "normal" place where I do not need blood or platelet transfusions. not needing transfusions at robert wood is when hemoglobin is above a 10 and platelets are above 10,000 or 20,000. I usually make them give me a transfusion unless they are over 20,000.


I want this to be informative for people and to understand what is going on with me, and what I am going through.
I want people to keep doing bone marrow drives-to setting them up.
I am switching over soon to a different type of fund that will actually be tax-deductible and is run through a transplant fund-
if people to send donations to me, they still can but will not be tax-deductible. I am mainly also setting this up to do some fundraising. I have Old Tappan high school who is interested in doing something. I need people to keep being active for me now if you can.
I have faith in the hands that I am in and my doctor -Dr. Schaar is a really amazing doctor. And my nurse practitioner, Laura, the person that I really relied on the first time, came back the time this happened to me and instead of seeing that as bad luck, I see myself as lucky to have her by my side again-I can't say that the administration is great-it needs a lot of work but these people really know what they are doing-and I have faith that they are doing what is right. And I think it's the right move because if I didn't, I would be fighting. It is time.

I love you all.
~jenn

http://www.jfmedicalfund.org

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