My Journal
August - 2000
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I got lucky today, the house is done and I had 5 gallons left over, unused and was able to return it for cash. Robert got the lawns mowed for me and weed eated too. Mom is in a great mood again today. We stayed up late last night so I wondered if she would be or not. We might go to the Demolition Derby tonight, out county fair started today, but I'm not sure. Mom wants to go but the noise might be too much for her, ah what the heck we'll go. Gosh a decision made online, HUH.
Well, mom decided she didn't want to go to the fair so we stayed home. I spent today cleaning up the yard and putting things back where they belong since the house is done. It looks so nice around here now, I even took pictures to send to the people I am buying the house from, they will really be surprised. My grand-daughters came this afternoon too, they are so much help with little errands and chores. Jaide helped get granny dressed and said she would help when I start my chemo too, Kali finished the dishes, vaccumed and dusted and didn't want their regular allowances for it either. SMILE. They are such sweethearts.
Mom had a very messy night, she potty all over herself, the bed etc. so off to the shower she went. She was so embarrased and shameful for what had happened. I let her stay in the shower until the water got too cold for her and she loved it. Now to wait for it to heat up again so I can do laundry.
I am going out tonight, my offical last night out for awhile. It is Roberts f-i-l b'day so I am going to the Chinese Village (I used to work there too) for drinks, music and dancing? Mom is fine although she wants to go dancing too. I am not taking her because I want tonight to be for me, last time was for her.
WHoooooooooa nellie, did I go out last night. Everyone there was buying me drinks and dancing with me, it was really fun. I do know why I quit drinking years agao though. SMILE. I takes even longer now to recover. I did get up this morning to go to the giant garage sale I had planned to go to, it wasn't worth it though, I only bought a changing table for the baby, nothing else interested me. I spent the rest of the day in bed waiting for mom to decide to get up.
Betty came today so I had time to do
some internal cleaning of the house. I have to be at the hospital at 8:00 a.m. for my biopsy so I want the house clean, while I can do it.
I'm back and still kicking. The biopsy went so smooth, the Doctor that did it was so nice and made me feel so comfortable and I got to have my regular Technicians also. The procedure lasted about 1 1/2 hours, the doctor first numbed the skin near the left side of my spine, then began inserting a small needle with lidocain in it and slowly progressed to a depth of 10 1/2 cm, deadening the entire area, he then inserted a much larger needle that was used as a passageway for the biopsy needles, he was able to get four biopsies which were then sent to pathology to determine if he had gotten enough material and if it was in a good location to make a diagnosis, they were, so I was cleaned up and sent to recovery for two hours and sent home. It was neat because I got to watch a lot of it on camera and they kept sending me back through the CTScaner to make sure the trajectory of the needles was correct. It didn't hurt at all until now, just slight flank pain and occasional sharp pains in the front. My brother was here watching mom for me and Robert and Crystal were with me. Mom thinks I have a backache, as usual, so she wants me sitting down and taking it easy, God Love her.
I went to the doctor today, my brother stayed with mom. I do have Extensive Stage Small Cell Cancer again, which came as no surprise to me or the Doc. What did surprise me is the treatment she is trying to get me into. It is " Tandem autologous stem cell transplantation," in New York at the New York Presbyterian Hospital, they pay for everything execpt airfare and lodging. I had my brain scan (MRI) done this afternoon and my bone scan tomorrow, these both HAVE to be negative in order for me to fit the protocol of the trial and I know they will be O.K. My doctor is tring to get me into it right away but said if there is a wait she will begin chemo Monday if it is allowable with the trial folks, so ?? Still waiting. Mom is doing very good. I got my hair cut so I could wear my wig and she didn't even notice it, SMILE. She got herself up today but I heard her so I went to see what was happening, there she was bare naked looking for her clothes to put on. I got them together for her and she dressed herself ! except for her pad. She made me tell her everything from the my doctor visit too. I now have so many decisions to make about mom, my dogs, my place etc. if I do go to NY. WOW, talk about stress.
My doctor called this morning to let me know she had talked to both NY and Seattle BMT Centers and found that the Fred Hutchinson Cancer Research Center in Seattle does do the BMT that I need but wasn't listed because they haven't had any people that meet the protocol in so long but I do so I am scheduled to go up to Seattle on the 12th of September to get started. I started my chemo today also, Carbo & VP16 again, I go again for the next two days then off for three weeks and back again until I get the BMT done. They left the butterfly in so I don't have to get poked again. I am glad I don't have to go all the way to NY for treatment, it would have been so scary being there all alone through this so far away from home. Mom is doing good today, she saw the butterfly and I told her what it was and she says I must make sure to keep it clean so I don't get infection going.
Boy did I get sick last night, this chemo really kicked my butt and I wasn't able to get my Rx's filled either so. I had to reschedule my bone scan for Monday then on Thursday I go to Portland for a PETScan, but now that I have my meds. it will be different, I had my second treatment today and third tomorrow then a break for three weeks. YIPPEE
Yesterday was my last treatment for three weeks, it went pretty good, although I did get somewhat nauseated I didn't vomit. When I got home I was very surprised, my brother had taken charge of the BBQ we were going to have so I didn't know what was happening. As I approached my house I was greeted to 150 helium and mylar balloons scattered throughout my yard and house, there were about 30 people that came to the BBQ. They brought various different dishes to go along with ours, there was so much food, so many people and children it was wonderful. The day was warm so all the kids got to go swimming and everyone, well almost all, wanted to stay outside some others wanted the benefit of air conditioning so they came inside. Mom was real excited with the turn-out, she thought it was so nice for everyone to come over to show their support of me, she doesn't exactly know that I am going to be gone for awhile, I'll deal with telling her that later. They are all planning some sort of fund raising event also, to help me with lodging and household expenses while I am in Seattle. I am so happy I was able to join in all the festivities and not feel sick during it. My brother did such a nice job of getting things together, so did David, Robert and Crystal and Maria (my brothers lady friend). They helped for several days, all with me in an ignorant state of bliss. SMILE
I haven't written in a few days because I haven't felt real well. Seems I also got bit by a 'Hobo Spider' and have to take antibiotics for it which are also upsetting my tummy. The PetScan I was to have, had to be rescheduled since Medicaid won't pay for it without some other type of 'red tape papers' being filled out so I wait until next week. I found out I'll most likely be in Seattle for 4 months, 2 in the hospital and 2 as outpatient but I have to stay there, within 30 minutes of the hospital. We are having a 'RIBFEST' on the 17th of September for a fund raiser, several friends have pulled together to get this done. I am still working on getting someone to live in to help care for mom since I won't be here to do it. I just don't want to have to place her again.
I have not updated recently because everything here
has been pretty crazy, stressful, I've been sick and I wasn’t coping very well. As I said earlier, my brother
came up from California to help out around here and ended up screwing everything up. He took off last Friday night and was to be back Saturday afternoon, he never showed back up, hasn’t called or anything. I finally called him at Maria's house and he had her telling me he wasn’t there. He wanted to stay with her and the hell with me and my mom so I packed his crap and put it outside. I can’t believe he would do this to me. He knows I am not suppose to be doing much for mom, especially changing her or
washing her up, I have a very high risk of infection now because my blood bottomed out Friday (the day he left) and I am getting the white cell shots in my tummy now, everyday. He has been praising himself for being here this time since he wasn’t last time but I’d rather he would never of come around. He was suppose to do the fund raising, which isn’t going to get done now. I don’t know what to do with the house if I do go, no one to watch it or pay the bills etc. OH SHIT!
Today was the Baby Shower, it was sure fun. Not everyone showed up but it didn’t matter, we all liked it and laughed like crazy. I didn’t take mom because she hasn’t been feeling well for a couple days and felt going out would make it worse. Crystal got a lot of things for the baby which really helps them out. I can’t believe I won’t be here for the birth, but David is going to video tape most of it for me. I
went to Portland last Friday for my PETScan, I found out that they use a glucose base medium because abnormal cells race to the glucose where normal cells don’t, they then show up as red marks on the film, even the tiniest cells, I get the results Wednesday when I see the doctor. I also will start my second round of chemo Wednesday if my blood is O.K. This past Wednesday I questioned the nurse about some small red blotches I had on
my legs, she said it was PATIKIA (sp) as a result of low platelets so they did a CBC and found my platelet level to be only 6 and 20 is critical so I had to have four bags transfused
then Thursday when I went in for my last Nupapine shot they were up to 27. My brother came back Tuesday and really got it from me and the boys. He was oh so sorry for acting so stupid. I told him he could stay here until he made other plans, soon, but so far he hasn’t said anything about leaving again. He has been taking care of mom completely, he even had to give her a bath for the first time Friday, she was poopy. I don’t know how
things will turn out now, if I do start chemo Wednesday I will most likely stay in my room, especially if I get sick again, my hair is already falling out and I am always nauseous. We’ll see.
Not much has been going on around here. My hair has all fallen out and what didn't fall out got cut. I had my mom help me with the clippers and shaved it all the way down. I tried on the wigs I had gotten, to see which one mom liked best but she said she liked me bald better, so. My brother and I are getting along good. After having time to think about everything and not being mad and hurt anymore, I understand why he did what he did. Having eveything dumped in hands all at once like that is enough make anyone run. I know last year I wanted to run, so did the kids. David did run in away, he had to distance himself from me in order to handle it, poor Robert and Crystal had no where to run since they were living here. I don't excuse him from not calling or taking my calls but I do understand him.
I went to get the chemo and couldn't, my blood levels were down too much so I have to wait until I get back from Seattle on the 12th. The results from my PETScan were in and nothing abnormal showed up, RELIEF. I cancelled my Earthlink account so my email address has changed again. Since I am not going to be home for awhile I decided to try one of those 'free internet' hook-ups and cut down on costs so, my new address is
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