josigirl13
josigirl13's Cancer Blog
August 13, 2007
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Thanks for checking in! I have not posted for so long because this month has not exactly gone as planned…
I went into the hospital on Wednesday, August 1st for my second round of chemo treatments: Cytarabine and Etoposide. My doctor said that this would be the most brutal of all my chemo treatments, and that once I got home I would have to have somebody with me 24/7. Luckily, my mom was set to move in with me on August 5th because she hadn’t been able to find an apartment (more on shady landlords later). However, this did not make me excited for August. It would not be a “nice break” from the chemo.
I started four days of treatments around 5pm on wednesday evening. The treatments take about 8 hours to go through the IV, but they have to check your vital signs every 15 minutes. They were also giving me eye drops and tylenol to keep my fever down, and needless to say I got no sleep.
By Friday I had begun to feel a little itchy on my neck and chest. This was at 9:30am. It was 5pm before they were able to get me some benadryl, but by then it was too late. I had broken out in a rash literally from head to toe. I looked like a ripe round tomato. Heat was radiating from my skin, and all the nurses are like “oh, do you have a sunburn?” NO, READ THE CHART. (sorry, a little bitterness as I did not enjoy the majority of my nursing staff this time) At least they were starting my treatments earlier in the morning so that they were not keeping me up all night. They started me on IV benadryl over the weekend and that pretty much kept me a knocked-out zombie the whole time. When Dr. Sayegh walked in on Monday morning, I swear light rays were beaming out of him like an angel. He says “we are not putting you in on the weekend anymore.” Thank God. He immediately stops all the ridiculous benadryl, random anti-biotics for an infection that never showed up, and put me back on prednisone to kick the rash. I felt less itchy within the hour. However, I still had a fever on Monday so he wouldn’t let me go home. But by tuesday I had the fever in a choke hold telling it to shut the f*** up, and I was home by noon.
However, I woke up tuesday morning and when mom brought my favorite breakfast to me in the hospital (everything bagel from Noah’s) it was a bit rough going down. I had developed a sore in my throat, not like a sore throat but like an open sore down where the swallowing muscles in your esophagus are. I had a jamba juice for lunch and tried to forget about it, but when I couldn’t eat more than 10 bites Anne’s red beans and rice for dinner, I thought I might be in trouble.
I went to bed pretty early that night with a headache and a low-grade fever, and tried to think happy thoughts. The only thing I could even try to get down in the morning was an Ensure shake. I was feeling pretty good, slurping my shake, watching mom surf the net for apartments. When I was done with breakky, I started to feel tired. I contemplated taking a shower. I contemplated my bed. My bed won. But when I went to lay down, instead of feeling better, my heart started to race and my head felt dizzy. I felt like I had to sit up. Then I had to stand up. Then I thought I might puke (which I really did NOT want to do with this throat sore). I went and sat on the cold bathroom floor (yes, I have been there before in a crazier life) and put my head between my legs. I said mom, call the doctor and tell him we’re coming in early. She makes the call and gets the machine. The nurse calls back and I answer; she says “he can see you at 11:30” and I say, “I have to come now.”
Mom, like a champ (thank goodness I have someone with me 24/7) puts me in the car and gets me to the doc. I think she was a little freaked out though, cuz her piloting of the wheelchair was ticket-worthy. :) The doc took one look at my blood tests and one look at me and said “you’re goin’ back in.”
So, with less than 24 hours out in the free world I am now back in SGH, battling the side effects. I can’t eat because of the mouth sores and they are keeping me hydrated with an IV. I’ve gotten 3 blood transfusions and a couple of platelets. I keep getting fevers in the evenings, some in the range of 102-103, and I think I have had every anti-biotic known to man that does not involve penicillin. On the plus side I have a machine with a button that allows me to inject myself with morphine to deal with the pain, the food isn’t as bad this time cuz I can’t eat anything, I have much better nurses, I finally figured out how to get them to bring me enough water to drink, and I am BOUND to lose some weight!
My personal goal is to get outta here by friday, but my life depends on these mouth sores healing, and there aint nothin’ I can do about it. So, faithful bloggers, meditate, pray, visualize, chant, light a candle, do a rain dance, anything to tell the universe to heal my mouth.
Gotta give a shout out to my brother for helping hook up the internet thing from afar. Love ya.
peace, love, and clean healthy mouths
Josi
06.22.08 - 
Sara 
Lan 
Kasia 
Thanks for your support -
Keep up the fight sweetie. I know you’ve got it in you. I’m thinking about you and praying for you. Sounds like you need some extra prayers right now. When you feel better I have some stuff to give you. Also, tell your mom that I am around this weekend if she wants to go to church or dinner. I love you!
P.S. I have some awesome pictures of me shooting big guns. I know what you’re think, I hate guns. But really you have got to see these. Maybe Robin can put a picture of a big leukemia in front of me. LOVE YOU!
Josi darlin’. I’ve done the rain dance for you b/c I thought it would help with the fever. I’ve danced like a mad woman (really, just the only dance I know “Ice, Ice, Baby”) hoping to send some positive energy your way. You all can laugh at that one :). Really just thinking about you and sending positive engery all the way to Cali.
Ask, believe, receive and I am asking for some healthy vibes to head your way.
Josi,
Ok, here’s the thing, we did a nice little rain dance for you here in Phoenix, and low and behold we had a MAJOR STORM here last night! Power outage and all! However, I am not so sure how that worked out for your throat…We will keep trying—maybe rain dancing isn’t our thing? By the way, have you tried pediapops when you have a fever and your throat sores? They may feel ok on your throat? Sending you our love from AZ…
Lauren and Josh
phew. I was jo anxious for a while… glad that you are on a track to good… stay strong, page through some jamie oliver, and I will talk to you soon. Wishing you loads of ice water..jo
No rain dance here, But a Cool Breeze from the Central Coast of CA. Morro Bay.
Love coming your way.
Sherri
Hello Josi I feel your pain I also had etopiside and got the mouth sores it sucks .Try eating soft foods milk shakes work like a charm.
I also tried to loose weight and they would not let me. I was pissed they had me on steroids to prevent the reaction from the etopiside, bleomycin and cistpaltin. there is a book that might help “everyones guide to cancer suportive care”.It was helpful to me. Did they tell you about the numbness in your hands and feet ? Its great! I wish you sleep and you mouth sores to go away! Love and prayers Kara
Hey lady…
I think we all have developed this weird dependency on your blog – it felt so good so check it today and see your post – but I’m so sorry that this last stretch has been how its been.
Graig just got on the table and did the Saturday Night Fever boogie for you – he said, “screw the rain dance, I’m getting down.” We are praying that you are through the worst of this bout and that you will be home on your couch by Friday like you hope to be.
Oh – and I’m not a doctor or anything, but a nice tall frosty mug of Cisk should cure those sores right up, no? Hang in there…
Love you, Mara & Graig
Mara are you sure you did not spend the night at a Holiday Inn.
Joise,
Thinking about you.
sherri
The force is with you,girl. The good is on its way. We’re mouinting a major attack.
xoxoxoxoxxo
So sorry that you are suffering with side effects. We really do have to be our own advocates and complain like b———to get heard. However, when I got mouth sores my Dr. perscribed BMX. Ii is a Rx put together by a Pharmisist that numbs the sores so that you can eat. Nourshment is vital to healing as well as a good nights sleep. I recommend the Adavan. You do what you have to do to get through this. Stay positive and strong, glad to hear that you have such a good support system. Moms are great!
Love and prayers, Tari
Hey Josi—I am glad to hear what’s been going on with you, but it sounds like it has been really tough and I am praying that you feel better soon. I am also around this weekend if you need anything! Love you!
Jen
Josi!
I also am treated at Sutter Oncology. I love Dr. Sayegh he is so funny and kind. He treated me for a week in the hospital when my doc, Dr. Ong was out of town. He was a dear. All of the Sutter docs are great. I am so sorry you are going through so much. I have many similar stories with my adventures with lung cancer. I am not a smoker, no one in my family has ever had any kind of cancer. This was so unexpected. Keep strong. You have a lot of love and support. Stay busy as much as you can. You have gone through so much. I am thankful that we all have so many options. Just a few years ago we would not have survived and look at all we are doing! Continue to take the treatments and you will have some many wonderful times ahead. I wish love and faith to you and your mom. I am here, talk to me any time. Gaile