Day 30

I’ve been feeling OK for the past few days.

On saturday my kids came over and we all watched the Soccer game. The U.S. lost, they are out of the world cup.  It was great, it was my birthday. They gave me the world’s most thoughtful birthday cards each one of them. My little one brought me one dozen pink roses. I almost fainted.  This is the kid who never calls to ask how I am doing.

We took it easy on sunday- no different than most days. We made ribs and chicken wings on the grill with corn on the cob.

Today, monday, I didn’t do much. Stayed and walked around the house. Took a nap around 4 pm. It is tiring doing nothing. I am expected to feel tired, so it’s OK.

After dinner every night I make myself either walk around the yard for 25 minutes, or walk around the house. It is quite hot so Sometimes it’s a mixture of in and out.

I am off the antibiotics since saturday. I haven’t had any milk or chocolate,lunchmeat, or cheese since I started the antibiotics. I have to wait a few more days.

Moni

Day 26

Woke up after 7 hours sleeep.  I made bacon, eggs, bagel with cream cheese, orange juice, and hot tea.  The antibiotic that I am taking does not allow me to have milk or chocolate, so I have hot tea instead.  I cannot have aged cheese, soy sauce or lunchmeat. 

Felt pretty good all day. Didn’t have to go anywhere. Did some housework and quite a bit of paperwork.

I got tired at 3 pm and had to lie down for about 2 hours.

I made dinner and we ate, then  Acyclovir pill.

Antibiotic at 11:30 pm and bed.

Moni

Day 25

Went to my Doctor’s appointment at 9:20 am. I had asked the Doctor yesterday if I should go and he said yes. They asked why I was there and I felt like telling them to buzz off because there was no need for me to be there, but they do make money when I go, so really that is the reason.

My numbers were OK.  11.7 hemoglobin, 4.0 red blood cells and 80,000 platelets. My white is a little low.

I have much more energy although around 3 pm I got real tired and had to lie down for an hour.

Will have dinner. I will take my pills at 9 pm and midnight.

Moni

Day 24 Hospital then Out

I didn’t get punctured until after midnight. The nurse didn’t do it, some other person did. Then I was ready for the IV antibiotics, but the nurse was nowhere around. Finally at 12:45 he came.   It was a very slow drip so as not to blow my vein.    It lasted until almost 4 am. I slept through most of it. Then the vitals Tech came in.

I slept until 7:30 am, got out of bed at 8.

Ate breakfast at 9, got my pill – Acyclovir.

I was feeling tired all morning. Ate lunch from the hospital or else I wouldn’t have eaten anything. Of couse while I am chewing, that’s when the Physician’s assistant came in. She informed me that I would not be leaving today. I was not happy. Reason? A sort of muddled story about I need the IV antibiotics and they could only be given in the Hospital room because there was no pill form. She also said the Infectious disease doctor would be stopping by to assess me.

I figured it would be soon. He didn’t come by until 4:30 pm to tell me there MIGHT be a pill form of antibiotic I could take at home but that he didn’t see any reason for me to remain in the hospital. I agreed. About that time I heard a bunch of people talking outside in the nurse’s area and recognized my Doctor’s voice. I took him 20 minutes to come in. He said that they were working on a way to mabe get me out if my insurance would cooperate in me purchasing the “expensive and rare” antibiotics. I waited and then the pharmacy lady came in and said it had been approved but that I had to pay now for the pills. I got my VISA number from my husband, signed the form and she came back with my pills.

Finally, I was leaving. But of course it took another 2 hours between the nurse getting the discharge papers in order and the transportation team arriving to the room.

You know, the nurse knew at 4 pm that my IV was swollen and a little red, she said she would be right back to take it out, but she didn’t remove it until 6:50 pm. She sure had time for all that chit chat between 4 and 7 though. Believe me she could have taken it out but just didn’t feel like it. As a matter of fact, I had 2 nurses assigned to me that day. It just urks me.

Needless to say, I was elated to be home. I got to sleep by midnight after taking my antibiotic. 

 Moni

I was still not happy. At  

I took a nap around 2 pm.

Day 23 – Still in the Hospital

Happy Father’s Day!

Got to bed by 11:00 last night. At 12:15 they came for blood draw and vital signs. They also hung another bag of antibiotics.

I went back to sleep.

At 4:30 am the Tech came in for vital signs. I was so tired.

I went back to sleep.

At 7:30 am they came back for vital signs. I slept on and of until 8.

Ordered brakfast at 8, but didn’t get it until 9.  Blueberry muffin, banana, orange juice and hot chocolate.

At lunchtime my husband came and brought me a bacon sandwich and chips, very fattening, but good.

A litttle while later, the doctor came by and decided that the 2 bacteria cultures that were growing were coming from the PICC line. He ordered it to come out as soon as possible, and an IV line be put it right before.

My nurse tried to hit a vein, but couldn’t.    The Picc line nurse came and did it. Also, she then took out the contaminated PICC line. It didn’t hurt one bit.

My younger son came by after work for a little while, then my older son showed up and spent the rest of the day with my husband and I. It was great. I am feeling better today with much more energy. 

More chinese for dinner.

They left around 7:00. I got a shower and will watch a little TV, then bed. I will be punctured at midnight for blood, then they will give me more antibiotics through the IV line.

Moni

Day 22 – Back to the hospital

Well at 2:30 am up to pee. At 4:30 am up to pee and diarrhea. At 8 am up to eat a big tasty breakfast of 2 eggs, bacon, toast with cream cheese, orange juice and hot chocolate.

The kids (they are grown) and my husband were going to meet at a lake to go skiing and boating.  Just when my husband was about to leave at 9:30 am, I got a call from the Doctor. He informed me that my blood cultures had come back positive and that as soon as I could I had to be admitted into the Hospital for IV antibiotics and observation.

I tried to get out of it but to no avail.  Well the truth is I was kind of dizzy.

I got to the Hospital about an hour later and they were waiting for me. I got all my hookups.

They started some antibiotics and now I an here dizzy and not happy. I finally got some food at 2 pm.  The Doctor says I will be here for at least 2 nights.  Make that 2 sleepless nights.

The guy in the next room has the TV so loud, he must be deaf. Oh when he talks, he is even louder.

Husband brought some dinner Chinese. Everything tasted a little off, but my husband said it was good.

I will get a shower soon. I will go to bed before 11:30 I hope.

Day 21

Got to sleep until 6:45 am.

I got ready to go to the Doctor and off we went.  I ate a sausage Mc Muffin and brought some hot chocolate from home for the ride.

When the PA started asking about how I was doing, she found out about my fevers and I got a scolding for not calling the Doctor’s office. She immediately ordered blood cultures and she told me there may be a possibility of someone calling me over the weekend to come to the hospital to get antibiotics.

Got home, still no fever. Got a little nap in at 3pm.

At night still no fever. Bed at 11pm.

Day 20

I got 8 hours of sleep! I woke up at 7:30 but I had a fever of 99.7. I was sweating. My husband is out of town, so I am alone. I can’t get rid of the fever.

Finally I got out of bed at 8:30 and had a little breakfast.

All day I have had a ever of between 99.3 and 100. Another waisted day. It’s hard to walk even to the kitchen and back.

I finally took 625 of Tylenol at 5pm so I could function tonight.

I am going to the doctor tomorrow. I have not called them about the fever because I don’t have a ride, and I was hoping the fever would go away.

The fever went away at 8 pm and never came back.   Husband came home at 9.

We went to bed at midnight.

Day 7 – Stem Cell Collection

Day seven since I received the Cytoxan (chemotherapy) in preparation for the stem cell collection.

Everything has gone pretty much according to the plan, as far as I can tell. The only exception that I’ve been aware of is that the central line was installed in the jugular vein, not the subclavical vein. Not sure why, no one really bother to tell me. I imagine it had something to do with the location or size of the subclavical vein.

The other bit of information that I misunderstood is that I “would be feel better by Monday”. Now, I’m guessing that was referring to any potential nausea. Which really wasn’t a problem at all because of the good anti-nausea drugs that they gave me for the first four days. But, the ‘feeling better’ part didn’t include the fatigue and wiped-out feeling. It wasn’t until Day 6 (yesterday) that I started to feel like I could probably manage on my own. And then, that has just been for parts of the day. At least I feel like eating now.

Currently I am getting two shots every morning to stimulate the production of stem cells. Probably around day 12 (Monday) or 13, I should be producing enough extra stem cells that they overflow into the blood system and they can be collected. The shots are no big deal. It helps to have “a little” around the midsection. I guess those fat cells don’t have any nerve endings — thats pretty cool.

Just one more big event coming up in the next few days — no more hair. I think this will be more of an issue then I originally planned for. I’ll keep you posted. I may need some emotional support.

Day -1 – Stem Cell Collection

I will be going in to Group Health Central clinic nice and early tomorrow, Thursday morning (Day 1). The plan is to install a central line. This is a direct port to a large vein above the heart, the subclavian vein. The central line is a device that allows blood samples to be withdrawn and drugs and blood products to be given. The procedure for installing the central line usually only requires local anesthesia.

Then I will go to the infusion center and get my first dose of high-dose chemotherapy, called Cytoxin. They will keep me there all day and overnight. This so they can keep pumping saline into my system. Its important that the Cytoxin doesn’t get a chance to sit in the bladder. If it does it can “burn” the bladder and cause complications.

On Day 2 (Friday) I will get a second does of the Cytoxin. And then later that day I will be sent home. Hopefully the anti-nausea medicine will be working and I won’t get sick. But, in any case I am planning on being home all weekend while I recover from the chemotherapy infusion.

So, my next update will likely not be until Saturday or Sunday, after I return home. At that time I will be able give an update on what my experience actually was.

I posted another link (on the right hand side) of a story about another persons perspective of the Stem Cell Transplant (STC) experience. I think it is a nice informative story.