It Was Not So Bad Yet So Much Worse

My first round of my new chemo has been completed. I think the title gives it away. Once again, I apologize for taking three weeks to blog. I know this is your only way of knowing what is happening. You care so much. I think once I share what has been happening I will be forgiven. I desire to blog. It just took me 2 ½ weeks to get the strength to pick up my computer.

Starting chemo again made me very nervous. I really had no idea what was in store for me.

My dear friend Theressa brought Golden Spoon over the night before and we laughed through a few episodes of Gilmore Girls. It was just what I needed. I think times with friends or family is exactly what the doctor needs to order. I’ve learned it’s the best medicine for me.

Typical me, the morning of my first chemo, I had a list of questions for my doctor. I'm not sure why but my doctor was not anticipating all of my questions. All she kept telling me was, “We need to get you to the backroom (which is the chemo room). I kept telling her, “I have a lot of questions and want to understand everything.” She said," You have a very long day ahead of you and you need to get the backroom.”

I left the patients room and headed to the chemo room with tears in my eyes. When I sat down and Jim's mom asked me if I needed anything I sarcastically said, “Yes. I need a new doctor.” My chemo nurse came up to me and wanted to know why I looked upset. I cannot remember what I answered her now and I know she tried to comfort me. She quickly got me all hooked up and began the poison they label chemo. I was then told that I would be there for five hours. I immediately felt so bad for Jim's mom. When they got the chemo going I quickly felt sleepy and within minutes I was asleep. I woke up three hours later. If you've come to know me at all well you know my first concern was getting to the restroom. If Jim's mom hadn't been there I don't know how I would've succeeded in doing that. I just was completely out of it. Once we got back to my recliner mom told me that there was food waiting for me. The cancer unit had ordered food for everyone in the facility. I was so glad that mom had got lunch because I would not have wanted her to go out in that area by herself. Once I got something in my stomach I quickly felt sleepy again and was out for another hour. I don't remember the drive home or much of that first evening. I'm a great chemo date.

Kellie came out the next day to make sure I was doing okay. We ran a few errands. On Thursday I really felt fine. It wasn't until Friday afternoon that the chemo fog started to hit. My precious friend Di (who treats me as her daughter) took me to see my primary doctor. I updated her with all the changes my oncology doctor had made, and the frustration I felt regarding how she handled my questions. She said she would talk to her and see if she could find out why she was acting that way. We both were concerned that she had gotten her feelings upset because I had received a second opinion. My doctor also requested that I get blood drawn to check my blood counts which would verify if I needed to continue taking one of my medicines. Di also took me for my daily therapy treatment. Our quick appointment ended up being a full day.

By the time we got home the chemo fog was in full effect. I remember that evening feeling very emotional and weeping here and there. Jim reminded me that I just had chemo two days ago. What we learned the following week was that I was receiving steroids for nausea and so I was feeling the side effects of the medications that are given with the chemo.

My primary doctor had also ordered Palliative care which is a specialized care focused on the pain, symptoms and stress of a serious illness. She was especially concerned of them taking care of the wound under my arm. She didn't feel going to the Wound Care Center once a week would be enough. I anticipated that this would take days or even weeks to set up. I was surprised when I got a call on Saturday that they wanted to come by and assess the wound and any needs I might have. I was very pleased with the nurse that had been assigned to take care of me. Of course with any medical situation there is a ton of paperwork to go through. I was in so much pain that it was hard to think clearly. I just wanted her to see the wound and let me go lay down. I was trying to be as nice as possible. She informed me that she would work with the Wound Care Center. Whatever they decided I needed to care for my wound would be ordered by the Palliative care and brought to the home. I was very nervous because it felt like Hospice.

I was very surprised on how bad I felt on Saturday. I knew that in February of 09 the chemo I received was one of the strongest a patient could go through. I anticipated that this new chemo would be a breeze to go through. I guess I was afraid to tell anybody how sick I was feeling because I would think they would feel poorly about me. Why I don't know? I just wanted my family to have positive feelings about me or maybe even about the chemo. I remember on Sunday feeling wiped out and very nauseated. I wanted to go to church but obviously that was not to be. On Monday all I could do was sleep. By Tuesday I was filling back to myself. Di had volunteered once again to take me to the Wound Care Center. I was glad because one of the requirements for the Palliative care is that you shouldn't drive. I was not happy learning about this, but felt we would get the wound healed quickly, and I would be back to driving shortly.

The wound within one week had progressively gotten bad due to chemo. They informed me that there was no chance of it healing while going through chemo. I guess this was something I should have known or remembered. They told me all they could do was keep me comfortable. They discussed several possibilities and wrote what they had agreed upon for Palliative care. They also took a couple more samples of the skin to check before bandaging me up.

The next day was my second dose of chemo. I asked to talk to my doctor so I could get through the questions from the previous week. She admitted to strong arming me the previous week because she was afraid I was going to change my mind and not go through chemo. I guess I wasn’t hiding that very well. I felt a little better going to the chemo room but I was still dealing with a lot of anxiousness. I feel very claustrophobic in the chemo room too. Once again the nurse commented that she felt I wasn’t dealing with this well. I quietly answered no as tears flowed down my face. I wanted to ask her, “Does anyone really deal with this well?”

Mom and I felt this chemo session would be much shorter because it was only one medication. Within minutes after receiving the medication my veins started burning. My nurse had to slow the med down and wrap my arm with a heating pad. I had just eaten something so I could take my pain meds. Instead I quickly got sleepy and was out. Two hours later I woke up in a lot of pain in my left arm. I immediately went to take my pain meds realizing I hadn’t refilled my med bottle. My nurse told me I would be done shortly. All in all I was not feeling well. I explained to the nurse how bad my left arm was feeling. She explained how the fluid must have built up in the arm and couldn’t be released. The session had taken 4 hours.

I was so miserable. The pain was so intense. Jim was convinced he would be taking me to the hospital. It wasn’t until 4:30 am the next morning that the pain subsided. It seemed made the chemo round very hard to recuperate from.

That same day the nurse came by to deliver supplies that we would need for changing the dressing on the wound. She also changed the dressing when she was here. It went very smoothly. We discussed in detail what the Wound Center had put on. It seemed the same. The next day I was very tired. I’m not sure why I felt so guilty to rest. I guess it’s because I thought I would do good through the process and it seemed to be much harder than I expected. As soon as Jim got home and settled from work I asked him if he could change my dressing. It went smoothly the day before and I wasn’t prepared in any way for what was about to happen.

When Jim removed the bandages I immediately began to cry because I experienced unimaginable pain. Poor Jim. Somehow the oil cloth that was put on was not the same as the Wound Center had used and it had dried within the skin, so when Jim removed the bandages it removed a layer of skin with it. I thought I was going to be sick. All I could do was cry as I sat on the bathroom floor with a trash can in front of me. We tried everything we could to get my nausea under control. Jim finally had me lay sideways on our recliner chair with the ceiling fan blowing on the wound. Once my stomach settled I called Palliative care to see if I could get a hold of my nurse to figure out what we needed to do. Of course my nurse wasn’t available, so in the midst of pain, I had to explain my medical history and then what had occurred with the badges. Overall it was an awful experience.

Each and every day when my dressing has to be changed I feel like I’m being tortured. Can you imagine how Jim must feel? Kellie was over two days later and we wanted her to help us to make sure we were handling it properly. I mean she is an ER nurse and she had helped me with the wound when we were in Stanford. Thinking about it know makes me laugh. Seeing the wound and helping us get it bandaged almost made her pass out. She kept asking me if I needed to sit down. I told her I was a little shaky but I would be ok. She was telling me it was really hot in the bathroom. She kept fanning me with a towel. I finally realized she was the one not looking good and told her to go put her feet up. When I came out she was lying on the couch. She said dealing with family is so much different. I’m not sure I could get her to help me again. Jim is my official nurse. He has it figured out so it doesn’t cause too much pain. Some nights are better than others. I’m so grateful for his help and thank God for him. I’m actually finishing this paragraph right after he just helped one more night. What would I do without his help?

Last week turned out to be very interesting. It was my week off of chemo so I expected I would be feeling much better. I knew my counts on Friday were low but they expected without chemo they would naturally build themselves up. On Wednesday there was great excitement because Matt would be graduating high school. Of course I still had a doctor’s appointment with my primary doctor. Once again I had my list. Di was taking me again to help me through the whole process. I also asked if she could help me curl my hair for Matt’s graduation. I have lost the ability to do this because of my left arm and hand. At my doctor we discussed that I had began noticing some strange dots on my face. She believed they were a result of my platelet count being low. She also discussed ordering a hospital bed so I would get better rest (I can’t lay flat due to the arm and wound). At first I agreed to it but the more I thought about it I felt like I was being treated like a hospice patient.

Right before leaving for Matt’s graduation I made two phone calls. First, I called and cancelled the bed explaining we would come up with a different solution. Second, I called to make an appointment to see my oncologist for the following day. All of a sudden I felt I had concerns that needed to be addressed.

Matt’s graduation turned out great. Except for having to arrive an hour and 45 minutes early just to get a seat. Oh well we made the best of it. We are so happy for him. At the end we all hugged and said, “See you again tomorrow" – at the exact same location – for Katelynn’s Jr. High graduation that was being held at the same stadium 18 hours later. This time we would only have to get there an hour and 15 minutes early. I know my family members were there for the kids but having them around me during this very scary time meant so much to me. It was a hedge of support I needed.

My appointment to see my oncologist ended up being more important than I realized. I was so thankful it was early enough for Jim to come before going to work. As soon as I saw my doctor I showed her the dots that were now on my feet and legs. She immediately said they needed to draw blood to check my blood counts. When she opened the door and I saw her face I knew it wasn’t good. My platelet count was at 3 – low is 140. My white count was at 1.5 and my hemoglobin was at 8.9. She wanted to schedule me immediately for a platelet transfusion. I explained that I had to go to my daughter’s graduation that afternoon. When she learned it was outside she said it was ok. I was so relieved because Katelynn would have been heartbroken if I wasn’t there to see her ceremony. She needed her mom there.

The day went perfect. We were so proud of her. She was given the Gold Seal Presidential Award for Academic Excellence. Her best friend Alyssa spent hours curling her hair so she looked beautiful too. We couldn’t go to her favorite restaurant for lunch due to the long wait. We also had to pick a restaurant that had outside seating to accommodate me. We found the perfect place and really enjoyed our time. I keep saying special moments are the most important. They lift my spirits.

Right after lunch Jim had to take me to the hospital to get a cross & match of my blood for the platelet transfusion the following day. There was a mix up and the orders were not there. It meant I would have to come back the following morning early and my scheduled time of the transfusion would be changed. It from 9 am to 11 am to finally 1 pm. They were having a difficult time getting my match. I was given 3 bags (30 units) but the final bag didn’t get there until right as I was completing the 2nd bag. It taught me how important it is to give blood and you can specifically donate platelets. Each bag I was given was $1,500.00 so the total cost of my transfusion was $4,500.00 – unbelievable. They checked my fitals every 15 minutes during the transfusion. I couldn't believe I could actually fall asleep in between. At least this time I talked mom into bringing her portable TV. My gut told me I wouldn't be much company again. I was completely out of it that night. I remember very little.

The next morning I woke up to severe spinal pain and a fever of 103.8. It went up and down all day. Sometime in the afternoon I spoke to Jim’s mom and she said I needed to call my doctor. I knew she was on call but I was so hesitant. I finally did and once the exchange put me through she didn’t even say hello or ask me any questions. She just said, “You need to go to ER.” I argued and explained to her why that wasn’t a good idea. I finally promised her I would go. I felt like I was putting a sword in Jim’s side. We got there at 9 pm and I told Jim if they didn’t call me back by 9:30 then we would leave. I think they called me back by 9:10…bummer. At midnight my fever finally broke and my WBC was at 2.1. She said she wouldn’t admit me if it was at 2.5 or higher. I begged the ER doctor to tell her I needed to go home. I was so happy when I heard the words, “You get to go home.”

On Monday I had to go see her and get my blood counts. I told her the ER experience taught me one thing – never call my doctor. She laughed at me but she doesn’t realize I’m totally serious. I rejoiced to learn that two of my counts are up. My WBC is at 7.3 and my platelet count is at 330. My hemoglobin is at 8.8. On Saturday it was 8.7. They give transfusions at 8 or below. I will get another injection tomorrow to help in raising the count (hopefully). I just didn’t expect all of this.

You could pray for my strength – I feel so weak. I’m also concerned about my veins. My doctor said she will put me through one more round of chemo and then I will have to have a port put in. I think it’s a good thing but she doesn’t want to put it in my chest because of the problems I had before so it will go in my arm. Jim and I are really concerned because I only have the use of one arm (and one hand). What would I do if there are any complications?

All I’ve been doing is resting. I’m not a big TV person. I only put it on in the evenings. I love to read but find it hard to do. I can’t do my cross-stitch anymore because I can’t hold it with my left hand. I’ve been listening to podcasts or audio books but still have trouble focusing through it all. It’s very frustrating. I know this is for a time and season. I do not like this season very much.

We were told this would be nothing like I went through before. Boy, were they right. We were hoping it would be for the better not for the worse. I’m not even sure what they were promising?

The scripture that has given me great encouragement is the one on top of the blog – Isaiah 41:10 and its how I got the blog address because I know I’m in His hands. Recently I read the following verse. Isaiah 33:2 (ESV) – O, LORD, be gracious to us, we wait for you. Be our arm every morning, our salvation in the time of trouble. Okay, so in this season I’m not just holding His hands – I’m hanging on with everything I have to His arm every morning. If you need His arm right now I know He is big enough for us all.

I want to give a special thank you for the meals we have been receiving through Theressa and Nancy creating Traci’s Helping Hands. My friend Corine tried to get meals set up through the meal ministry at church and I kept saying no. I had my reasons but Theressa wouldn’t accept it. Another thank you for the cards I’ve received…especially from women who have never met me, but know and love my Aunt Sherrie. I’ve lost count of the number cards. It was so sweet of you to encourage me because you know how much my situation matters to my aunt. I continue to learn about love (even through texts).

All I can say is the last three weeks have been extremely hard. It has taken me three days to type this blog. Did I say how hard this has been? Ha, ha! Chemo isn’t scheduled until 6/17 – one more week to rest.

If I start tomorrow I might have another blog before Thursday.