Worse Week I Can Remember

My memory is getting so bad, but I'm almost positive I haven't had one as bad as this last week. I can only give you the highlights...or maybe I should call them the low-lights.

Nov. 4th - I honestly can't remember...I know I was hoping to feel well the following day. I wanted to get a "Carmel Latte" (I have maybe 3 a year), and go for a walk holding Jim's hand. November 5th is our wedding anniversary.

Nov. 5th - My simple celebration of 23 years was not as I had hoped. I was very sick. I promised Jim a redo as I just cried. I was so sick of being sick. I'm not sure what time Jim's parents showed up. I woke up to hearing them laughing and enjoying time together. They treated us to dinner (Miguel's take out), and an ice cream cake...Jim's birthday was the following day. We received a beautiful card from Carol & Lee that will allow us to have a special date night at the Mission Inn and enjoy the Festival of Lights in December. I just can't wait! We are so blessed to have such wonderful friends in our lives. All of you have been so good to us in so many ways.

Nov. 6th - We have a tradition that we open birthday presents early in the morning if possible. I was so excited to give Jim his birthday present. I had been planning for months to give it to him (even though just that week I had to order online because of chemo and everything). I had bought Jim a new Bible and of course had his name imprinted on it. I can't remember when but he had put his previous Bible on top of his car and forgot to put it back in the car. He drove on to the 15 FWY and off went the Bible. Well he opened his present and they forgot to imprint his name (I already knew this, but at least I wanted him to have it that day for church). It has taken them 3 shipments of Bibles before they got it correct. This is all I remember about Jim's birthday. Matt and Jim went to church and Katelynn stayed home with me. Sunday was not a good day. I felt like I just couldn't do anything. I knew my counts were dropping because I was having bloody noses all day and my wound had started bleeding - both have happened before as my counts dropped.

Nov. 7th - I was scheduled to have my counts checked and Di was planning on taking me around 10:30. Jim had an early work appointment and because I wasn't feeling well I hadn't gotten up early. He said good-bye and I slowly got up. I quickly realized that my shirt was soaked under my wound. Blurry eyed I ran as fast as I could to see if I could catch Jim. He was just pulling out but I was able to catch him. I scared him to death. I told him I had no idea what was wrong because I didn't check - all I knew was that I needed to catch him so he could help. As soon as I removed my shirt all of my dressings were soaked with blood. Nothing like this had happened before. Even as he was changing the dressing the wound just kept bleeding. I was so out of it. He helped me get ready as much as he could before he left. I just cried. I don't know what I would have done without him. I called Di to let her know what was happening and I felt we needed to go to the cancer center earlier because I feared if I couldn't get a transfusion that day they would admit me into the hospital. I then quickly sent out requests for prayer. I was very scared. Writing this out now still makes me very emotional.

I prepared my chemo/transfusion bag and sat to wait for Di - I felt so weak. All of a sudden there was a knock at the door and it was Deena. She said she felt like she needed to come sit with me until Di came, which she showed up soon after. Di went through the check list of what I should I have. I'm so glad because I had forgotten my arm sleeve which is so important to wear during any kind of IV. My poor arm can't handle the extra fluids. As soon as we got in the car I started to cry (which I told her I couldn't because I had put some make-up on - not being vain this time just trying to look alive). I feel like it's all a nightmare. Di quickly got out her Bible and read Joshua 1:9 to me. "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.” Then she prayed.

When I got to my doctor's office I told them I wasn't doing good and my wound was bleeding. Sure enough my platelets were down to 3. My red count was below 10 so I needed an injection. They called the hospital to see if I could get a STAT transfusion (sometimes it's hard to get the platelets delivered that quickly). I was told to come straight to the hospital for the cross & match. When we got to the hospital they said it would be 1 to 4 hours. Di and I went to get something to eat and then went back to the hospital to wait. We knew once I started it would be 3 hours because I was having 3 bags. My nurse had to change my dressing again before we got started. I was given all of my premeds to prevent a reaction, unfortunately once again I had a reaction. Not as bad, so my nurse quickly got it under control. When we left I still felt very out of it. I got home and crashed. I woke up, had something to eat, Jim changed my dressing again, and I went right back to bed. The bleeding finally stopped in the middle of the night.

Nov. 9th - I was completely wiped out. I couldn't do anything but sleep. It wasn't until 2:00 pm until I felt like I was becoming human again. I think all I did was catch up on opening the mail.

Nov. 10th - Another day to rest. Karen came to visit in the afternoon. I learned that CornerTurn (where I work) is moving their offices. I feel so bad I'm not there to help. I instantly start thinking of what needs to be done. I left in March believing I would be back by June. IT'S SO FRUSTRATING!!

Nov. 11th - I woke up again feeling terrible. My wound was bleeding again, but not as bad. Di was taking me to get my counts checked. I was guessing my counts hadn't come back up yet, but I was hopeful that I wouldn't have to have any transfusions. I was SO wrong. My platelets were now at 2 (140 is low) - it was as if I hadn't had a transfusion. To make it worse was my red count was way low so I would require a blood transfusion too. They ordered 3 bags for each. It would take a minimum of 8 hours, so the transfusions had to be scheduled for the following day. As always I had to go to the hospital for my cross match. Di and I went home and planned for our very long day.L

I was so sick all night. I slept little. I just watched the clock, praying that the transfusion would work. I was sad that Jim couldn't be there with me, but knew I was in excellent hands and company.

Di and I got to the hospital at 8:00 am to begin 8 to 9 hours of transfusion. Di got the DVD player up and working as they prepared me. We figured I would sleep through the first one completely. I was in and out of sleep until lunch. All was going well until I started getting a headache. We finished the platelets and started the 2nd bag of blood then around 2:30 pm I started getting another reaction to the platelet transfusion. I couldn't believe it. I was given the premeds but because it had been over 6 hours since I had previously received them the meds were no longer working. The tears began. It was one of the ware times when I asked why? It feels Ike hours when you wait for them to call the doctors and order anti-reaction meds. Di does everything to keep me calm, warm, and most importantly pray.

Once meds were given they had to decide if the blood transfusion should continue. Once they decided I would continue and got me started up again they realized that I would have to go to a different location in the hospital because the nurse I had couldn't remain late in the infusion center. They were trying to find a private room on the medical floor. When I was told that they didn't have any private rooms available and they wanted to put me in a shared room. Well...It's the first time I put my foot down and said, "No." I told them that I wouldn't share a room on the medical floor. I wouldn't take the chance of coming down sick. This decision brought about more phone calls. I felt bad but I was at the end of my rope emotionally. It was 4:00 and I was just done! Which I'm sure they felt the same. The final decision was that I would return on Monday and complete the last bag of blood. Di was disappointed because she had another commitment on Monday. We assured her I would be in good hands. I also talked Di into going home, and allowing Jim to take me home. We left around 5:30 pm and came home to a deliciously home cooked meal by our amazing daughter. Our day ended with sweet conversation as we just relaxed (finally) the week away.

This last weekend was so nice. I woke up Saturday and felt Ike a new person. I couldn't believe how good it was to have some energy - well at least for a little while. I woke up at 6:00 am and by 7:00L am was exhausted. I had to laugh. I quickly remembered I had to go back to the hospital to get blood drawn for the transfusion on Monday (they continue to check to make sure my body isn't building up anti-bodies). Jim and I had the kids go with us so we could just spend time together and run some errands. We made two additional stops and I was DONE. You would be so surprised how tired I was. I guess it was a good tired. I am blessed to have my daughter, son, and husband. Each of them knew what I needed and were very sensitive to it. My teenage daughter snuggled with me Sunday evening. As always I fell asleep before she did.

A NEW WEEK
Nov. 14th - Another transfusion day. I normally wake up very nervous (because of the reactions) today I woke up fine. Again I believe it's because of the prayers of everyone all over the world. Jim's mom picked me up at 9:00. On Friday they explained they wanted me to get my counts checked before heading to the hospital. We were pleased to find out that my counts had come up. My red count was 9.9 and my platelet count was at 49. If I hadn't been scheduled for the transfusion my count was close enough that I wouldn't have needed a blood transfusion. My platelet count was high enough that no additional transfusion was needed....today. One bag of blood was enough for me.

I was looking forward to visiting with Jim's mom. We talk a lot but I hadn't gotten any time to just having one on one time with her. I quickly learned that wasn't going to happen. Even though I was going to be receiving a blood transfusion and not a platelet transfusion, they were still planning on administering ALL of the premeds. I was disappointed on one end and releaved on the other. All I know is I slept for 90% of the time with no reaction. Finally!

Tomorrow, I met with my oncologist to discuss my future treatments and some concerns I have. I'm concerned with my wound, the anti-bodies I can be building with as many transfusions as I have been having, the loss of the use of my hand/+ lymph edema, and getting back to work. I have some ideas and need to hear how she feels about it. I'm guessing my counts will not be good enough to have chemo this week, which would throw my schedule right into the holidays. We originally discussed this would be the time I would be given to recuperate and heal up for my 2012 roSet of roundsunds of chemo. I hate thinking I will have chemo in 2012 but I realize we haven't killed off the cancer yet. Approximately 30% isn't enough for me, or my family.

I thank you for all the support you have given us, especially this last week. I hope and pray we don't have to remember another week like the last one.



(I started this blog entry Nov. 12th at 8:56 pm and finished with some very blurry eyes on Nov. 14th at 2:05 am. Please forgive the editing.)