15 Down, 15 To Go!!

Hello everybody. I hope this update finds you warm and dry. It seems like it's feast or famine with the rain this year. I guess I shouldn't complain as much as we needed it, but it sure would be nice to receive it in smaller, more frequent increments. I had radiation this afternoon here in Greenville, and have it again in the morning; so it didn't make sense to drive to Bear Grass in this nasty weather, just to turn around and drive back in the morning. So,........I'm here in my townhouse....trying to get some work done before SVU comes on. I have just over two hours.......

Congratulations to me: I just completed my fifteenth radiation treatment today! Woo! Hoo! I am doing well so far. I'm a little pink, and I have some itching in that area, but, overall, I am doing okay. I'm trying to take it one day at a time in order to keep my anxiety to a minimum. My radiologist is telling me she's going to "burn me good". I keep telling her that if she burns me too much, I'll just take a few days off.

I went to see my oncologist on Friday the 24th, and received my Herceptin treatment. I got a copy of my echo report, and it looks fine. No problems there. My labs are a little concerning to me though. My white cell count never went below 3.0 during chemotherapy. That was August the 13th. September 3rd, they increased to 3.4. On Friday, they had dropped to 2.68. My radiologist said they should drop no more than 0.4, but obviously, mine dropped more than that.
They are going to check them again on October the 18th. So, for now, I'm supposed to wash my hands a lot, stay away from sick people, and just use good judgement. I asked her if I could continue going to PCMH to see Kellie, and she said yes.

Speaking of Kellie, she continues to hold her own. Having the trach has stabilized her, and her vitals are good now. She has a feeding tube now, so she no longer has a tube in her nose. She has continued to improve in her appearance: her face is no longer puffy and swollen, the rash continues to improve, her coloring has improved. She looks like her old self now. She continues to get stronger, and she has said that she has even been able to swallow her own saliva some. She had a muscle biopsy done last Friday, and the results should take about two weeks. She still has no diagnosis. It is extremely frustrating that all of the tests are showing up negative, but it helps to see Kellie more comfortable and able to mouth her words. I showed her my hair again, and told her it was coming back in mostly gray. She smiled and mouthed the word "blonde". I thanked her for her optimism.......

That's about all I have to report for right now. I hope it makes sense. I'm a little distracted tonight, and I'm having trouble concentrating. Maybe next time I write I'll be a little more relaxed. As always, thank you for tuning in....

Until next time,
cindy

Update/Prayer Request for Kellie Hagen

Good morning. As many of you already know, I have a friend who is very sick right now. And, as you already know, when someone you love is hurting, you hurt too. My friend, Kellie, is hurting right now. Over the past several months, and even recently, people continue to ask me what they can do to help me. Again and again I have responded, "I don't need anything, but thank you for caring enough to ask." I know that a lot of people, family members, and friends read this blog. Today is the day that I need you to do something for me.........I need you to stop what you are doing and pray for my friend, Kellie.......

I have just come from seeing her at the hospital. I have been almost every day since finding out that she was there. Today was the first time that I was able to talk to her. Usually when I get an update, I have several people that I notify so that everyone can stay as informed as possible. I am unable to call anybody at this time. I can't even reflect on my visit with Kellie without crying, and I don't think I could talk about it on the phone.

To give you a little background, Kellie went into respiratory distress over two weeks ago, and she is now on a ventilator. Doctors still do not know what caused this to happen, therefore they are unable to do anything except to keep running tests and treat her symptoms. However, Kellie is oriented and knows what is going on. She is extremely weak, though, and it is hard for her to stay awake very long or hold her eyes open.

When I arrived at Kellie's room this morning, she had two nurses in with her, and her daddy asked me to wait in the waiting room. After about ten minutes, he came out and gave me an update. He said that she had rested well last night and was having a good day today. He reported that her coloring was better, the rash on her neck (of unknown origin) was better, her grip was stronger, and that she was showing more strength in her legs as well. The only thing that was bothering her was that they were having some trouble suctioning her. While he was in the waiting room talking to me, they were changing out her trach. I told him I would wait awhile and let them get her settled again. After waiting about an hour, I was told I could go back and see her.

Her daddy had just finished giving her a foot rub, and when I rubbed her foot, she moved her hand closer to the side of the bed, and I squeezed it. She turned her head towards me, and I said, "Good morning, my friend." She smiled ever so slightly. I told her that her daddy had informed me that she was having a good morning, and I asked her if there was anything that I could do for her. She let go of my hand, and slowly brought her hands together over her chest as if she was praying. I said, "Every day." I also told her that it was Thursday, and that tomorrow at noon, all of her friends were going to lift her up in prayer together. Her daddy had asked me to keep my visit brief, so I leaned in close to her. Kellie has always been a pillar of support to me even if we never get to see each other, and I wanted her to know I was going to do the same. I said, "Kellie,......when you get home......." When she heard those words, she gave my hand another little squeeze and looked up at me. "...I'm going to be there." She slowly opened her eyes, and we looked at each other with the closeness that good friends share. She nodded, as if saying, "I know you will", and a tear ran down her cheek. I wiped it away, told her I loved her, and left the room.

As you can imagine, it was heartwrenching to see my friend in that condition. And to know that there is nothing I can physically do to help her is even more painful. All I can do is pray and ask you to pray. As far as my condition, I am fine. I had my sixth of thirty radiation treatments this morning before going to the hospital. I do not need anything at this time. Instead of praying for me right now, please pray for Kellie instead. This is the biggest thing you can do to help me right now.

Thank you so very much

Cindy

Followed up with surgeon today.

Good morning, everybody. I went back to see my surgeon, Dr. Habal, today. He examined me and was very pleased with what he saw. I was a little concerned about some soreness and tenderness I was developing, but he doesn't seem to be worried about it. I didn't think it was a result of the radiation, because I was beginning to feel it before I started radiation. He seems to think that some of the nerves are trying to regenerate themselves. He encouraged me to come back if I had any more questions or concerns. I will not see him again until March. I will have a mammogram then on the left side, and will go back to him to get the results.

I'm scheduled to receive my third radiation treatment today at 1:30. So far, so good. Sometimes the stickers they have on me itch a little. No skin irritation at this time. It's not very comfortable lying on that table, but by the time I'm really starting to get uncomfortable, it's time to get up.

I also just stopped by the hospital to see my friend, Kellie. She has a trach now, is resting better, and seems to be getting stronger every day. Her vitals have stabilized, and she has gone from barely being able to open her eyes to having her eyes open and being able to mouth words. She still does not have a diagnosis, so no one knows what triggered this. Please continue to lift her, as well as her family, up in prayer. Thank you for your concern for her.

I'm here hanging out at my townhouse while Mama runs a few errands. Hopefully, we'll get some lunch, some radiation, and be on our way back to Bear Grass soon.........

Cindy

First radiation treatment done, 29 to go.....

I just wanted to post a quick update while I'm in Greenville. I've been at the hospital sitting with Kellie's family, and now I need to get home and get to bed........

Right now, without looking back, I'm not sure what I've posted; but I received a call at work Tuesday telling me that the radiologist was ready to check my markings and get started with radiation. I was off on Wednesday and went and had my markings checked, and they added some more. I was supposed to work 7a to 4p today, but the latest appointment they had was 3:45. I got up at 5:00, left home at 5:45, worked 6:30 until 3:15, and was there at 3:40. It went really smooth, but I had a hard time getting comfortable today. By the time it was over, I was really starting to get anxious. Honestly, I'm not sure if it was because of my back, or the fact that I was going to the hospital when I was done. My radiologist wasn't there, so I saw another one who just checked my skin really quick to make sure I was not having a reaction. They have given me a cream to apply three times a day, and I used it after my shower this morning and again before I left the office. Tomorrow will be the same as today.

So far, I've not noticed much of anything as far as a reaction, pain, burning, etc. They told me that the first two weeks are pretty uneventful.

When I left the office, I went over and sat with Kellie's family for a while. Her parents were there and her husband arrived before I left. Kellie was supposed to receive a trach tonight around five, but I what I expected happened. The OR got backed up. They are going to try and do it tomorrow. Kellie has had a rough day and is extremely weak. She was intubated again today, and I hope she will get some rest tonight. While I was there, most of her family stayed in the waiting room while she rested.

Please continue to pray for my friend. I don't know what's worse for me.......not being able to see her, or seeing her and not being able to handle it. I just sat there and tried to offer my support. I know that she knows I am coming and going. Her family is extremely tired and has another crisis going on as well. Please lift up all of them in prayer. As far as I know, Kellie still does not have a diagnosis........

Thank you,
Cindy

Please pray for my friend, Kellie.......

Hello everybody. I have someone, a very dear friend, weighing heavy on my heart today. Her name is Kellie Hagen, and I'm asking you to take a moment and lift her, as well as her family, up in prayer. Kellie just turned thirty in June, is married to Alan Hagen, and has a son, Brett, who is four years old. Kellie has been having some mysterious medical problems lately, and this has resulted in numerous tests, labs, and frustration. She finally received a diagnosis of Lyme's Disease, and recently, she told me that the Lyme's is a result of having Celiac Disease. I haven't had the time to research either one of them, but we were all hoping that she could finally get the answers she needed, as well as the treatment.

Kellie and I have had a hard time finding the time to see each other for numerous reasons. She works full-time, is married, and has a small child. I work full-time (at least I'm trying to), am staying with my parents in Bear Grass, and am in the middle of my treatment. The other day Kellie was supposed to stop by and see me after leaving work, but she never showed. I didn't call her right away because I didn't want to make her feel bad. Come to find out, she was in ICU at PCMH on a ventilator. Evidently, she went into respiratory distress.

I went to the hospital today even though I knew they were only allowing her immediate family in. I just needed to feel a little closer to her, and I took her some things that I thought she could use. As expected, I didn't get to see my friend, but I was able to obtain right much information on her condition.

There was a test performed today that revealed that Kellie's diaphragm (the muscle that helps us breathe) is paralyzed. They are debating whether or not to put in a trach, and there will be a family meeting this afternoon. She is extremely weak, and there is talk of starting some physical therapy so that her muscles won't atrophy while she remains in bed. At this time, the doctors still do not know what has caused this to happen.

As you can imagine, this is terrifying to Kellie and her family. And if that isn't enough, her mother was diagnosed with cancer the day before she was admitted. Please pray for Kellie and her family. Pray for a diagnosis so the doctors can know what they're up against. Pray for Kellie.......that she will be able to breathe without having to have a trach performed, that no other problems arise from being in a bed for such a long period of time, that no mistakes are made in her treatment, that God will give her peace so she won't be so anxious and worried..... And pray for her husband, Alan, that God will give him physical strength while he tries to work some and spend nights in the hospital with Kellie, that he'll have mental and emotional strength to be the rock that she needs right now, and that God will give him the right words when his young son asks why he can't see his mommy.....

Thank you for praying for Kellie. I was going to post an update about me, but I couldn't get my mind off of her enough to concentrate. I have been reminded today, that as usual, when we think we have it bad, there's always someone out there who has it worse. Thank you for tuning in, thank you for praying for me, and thank you for praying for my friend........

Love,
Cindy

Just a quick update.......

Hello everybody. I hope this posting finds you doing well and enjoying this beautiful weather. I know I am. Friday made three weeks since my final chemo treatment, and I really am beginning to feel better. I don't have much stamina, and I easily fall asleep when I get still, but I don't have any nausea, gi upset, or queasiness anymore. That, in itself, is worth getting excited about. I had several appointments on Friday, so let me give you an update........

I had to be at Physician's East at 0845 to have blood drawn. According to my labs, my immune system is still compromised, but the values are beginning to climb a little. My platelets, red blood cells, hematocrit, and hemoglobin remain below normal, so I continue to be anemic. I don't know how long it takes for your labs to return to normal, but at least I can see some progress. I then met with my oncologist, Dr. White. I was anxious to speak with her, because, since my last update, I had developed 2+ pitting edema in my ankles. (Edema meaning swelling, 2+ on a scale of 1-4.) Being a nurse, my first thought was that the Herceptin was damaging my heart muscle. This is one of its side effects, and you have to have routine echocardiograms while receiving it. She didn't seem to be surprised, and said that she thought it was coming from the steroid that I was receiving as a premedication before every chemo treatment. She said that it should resolve on its own, but that she was going to be repeating my echo within the next two weeks anyway. When I asked her if we could get it scheduled on a Monday or a Friday due to my work schedule, she had it ordered stat for that afternoon at 1:45. I also asked her about repeating my scans. She had said when she saw me next that she would be ordering them. She said that she was going to wait and repeat them after I finished with radiation. The reason for this is that radiation causes inflammation, and she wanted the scans to be as clear as possible. I don't quite understand her reasoning for postponing them; since I haven't started radiation yet, I thought now would be the perfect time. Anyway, at some point, I have to trust her for knowing what's she doing, so I didn't question her anymore about it.

After seeing her, I went to the chemo room and received my Herceptin infusion. I don't have to receive any premedications for this, it's a 30 minute infusion, and I was in and out of there pretty quickly. We left at 1115 and arrived at my 1145 appointment at 1130.

My 1145 appointment was with Peak Performance, the therapist that Dr. Ballenger wanted me to start seeing. I filled out a bunch of paperwork, was interviewed and examined, and he performed a short amount of therapy on me due to me having to be back at Physician's East at 1:45 for my echo. He wrapped my arm in a sleeve, some cushiony stuff, and ace wraps. We left at 1:15 and made it to my echo appointment at 1:30. It was about 3pm by the time we left, and we headed straight to Cracker Barrel. By that time, my fingers on my right hand were double in size and my arm was throbbing. We had to go by Avila, my first therapist, to pick up some mastectomy bras that she had ordered for me. She took one look at my fingers and removed the wrappings on my arm. She said that if I had gone to bed like that, I would not have been able to move my fingers by the next morning. She rewrapped it for me, and I put my sleeve on when I got home. After this experience, I have decided to keep going to Avila. Allyson is a certified lymphedema specialist, and I trust her. Come to find out, the reason that she had not done any therapy on my arm was because it was almost the same size as my other one. It has to be 10% larger than the unaffected extremity to qualify for therapy.

I went back to see her again today. She took measurements again, comparing my right arm to my left. My arm had increased, some measurements being 2cm bigger than my left arm. She did therapy to drain the fluid, and I put my compression sleeve on before I left. In her opinion, if I do my exercises like I should, and wear my compression sleeve, I should not need anymore therapy. I had her make me a copy of the sheet with the measurements recorded on it. She also gave me one of her tape measures. We agreed that I would get my mama to take routine measurements and report back to her if I can see the swelling increasing during radiation.

At this time, I have not heard back from Dr. Ballenger's office. I was told that they would contact me when they had everything ready. I'm sure they will be calling me this week, but I'm not sure if I'll start radiation this week. Dr. Ballenger is on vacation. My guess is that I'll go back at some point this week to confirm that everything is ready and probably start next Monday. I also go back to see Dr. Habal, my surgeon, on Monday. I like it when I can kill two birds with one stone.......

And that's it. I can't think of anything else to report. Oh! How could I forget?? Today, I saw the beginnings of my eyebrows growing back! Yee haw!!!!! I can't really tell yet that my hair is growing in length, but I can certainly tell that it's getting thicker. I can't wait for the day that I can stop wearing baseball caps. I wonder if I'll ever wear one again after all of this?? Hmmmmmmmm..........

Okay, over and out. I probably won't post anything else until I go back and see Dr. Ballenger. Have a good week!

Cindy