One Last Post

So where do I begin? I want to say thanks to everyone for all of the prayers, thoughts and support for myself and our families over the past week and a half. I have talked to most of Carrie's family and we are still adjusting to her not physically being here.

Carrie's visitation and funeral were how Carrie would have wanted them and thanks to everyone who came by the funral home and church.

On a personal note, I want to say thank you to all of friends and family from outside of Auburn for all of the prayers, cards, phone calls, Facebook messages and visits over the past two years. To our Auburn friends and family thank you for hanging out with us, traveling with us and praying with us. Thank you to the College of Veterinary Medicine, faculty, staff and students. You have put up with me on good days, bad days and everyday in between. Thank you for letting me be off whenever I needed to be with Carrie. You all have made working at the Vet school the best job I could ask for.

If I have forgotten anyone, please forgive me. To everyone, thank you for everything. That should cover it. :)

Some have asked about my plans for the future. So here is the rundown. I plan on staying in Auburn for the time being. My job has been so good here, I can't see myself walking away and I really like the Auburn area. I am returning to work next week to try and get back to some type of normacy. My parents have been here the past week helping me with odd jobs around the house.

Please continue to pray for us during this very tough adjustment.

With that, I finish this final blog post. As Carrie would say, thank you to everyone for all that you have done for us.

Jason

Remembering Carrie

As most of you have already heard, Carrie went home to be with Lord Tuesday night around 9pm. She was surrounded by family. We are saddened at loosing her but at the same time we rejoice that she is no longer suffering and is cancer free. Visitation will be Thursday from 6pm - 8pm at Frederick's Funeral Home  (1801 Frederick Road, Opelika). The service will be Friday at 11am at Lakeview Baptist Church (1600 East Glenn Avenue, Auburn). Burial will be at Memorial park Cemetery.

Thank you to everyone that has taken care of us and supported us for the past two years. We love each and everyone of you.

Carrie Chavers
October 12, 1984 - October 25, 2011

Jason

Another day with Carrie

Not a whole lot to report in this post. Carrie's status has not really changed since yesterday. She had one burst of energy today and she spent most of it asking why she felt like she could get up and walk around when she knew that she shouldn't be able to. She seemed to be resting more peacefully than the last couple of days. We have not had to increase any of the morphine dosages. They seem to be enough to keep her comfortable for the time being. This was day 4 that she hasn't had anything to eat or drink. She wonders sometimes why she is still here, even though mentally she is ready to go be with the Lord. We tell her that he wants her to be here with us a little longer and we are taking advantage of every moment that we get.

Thanks to everyone that has posted your favorite stories of Carrie on the blog. I read them to Carrie tonight and each one brought a smile to her face.

As always please pray us and our family.

Jason & Carrie

Almost Home

Today has been better than yesterday emotionally. Even with the amount of morphine that she has in her system, she has been pretty coherent. Since yesterday afternoon, Carrie hasn't really been able to talk where you could hear unless she was talking right into your ear. This morning, my parents were sitting in the room with her when they called me back to the room. When I got there she was wide awake and moving her left arm as is she was leading a band.  My dad asked if she was leading the choir and she said yes. For about 15 -20 minutes Carrie was back to her old self, talking just as clear as she could and cracking jokes with us. After that she seemed to have lost that burst of energy. Later this afternoon the burst returned for about 10 minutes. This time though she said she was trying to figure out what was real and what wasn't. So she appears to be in limbo. Also, her uncle asked what her favorite popular song was. She said the theme from Dirty Dancing was very appropriate. Title of the song...I've Had the Time of My Life. Being the music entusiaist that I am :) I just so happened to have it on my iPod. So we played the song for her and she bobbed her head and mouthed the lyrics. Needless to say it was very touching.

So all in all it has been a good day here at the Chavers' house. We really enjoyed the few minutes when we got to have the old Carrie back even if for a short time. We know that eternity is coming.

I will let you know if anything changes.

Jason

Favorite Carrie Stories

Ashley Burt had a great idea of your favorite stories of Carrie. Leave the story as a comment.

Thanks,

Jason

Toughest Day So Far

The post title just about says it all. Carrie is currently resting as peaceful as possible. This day two that she has not eaten or had anything to drink. The hospice nurse came by this morning and checked on her and Carrie asked what she is going to do since she can't eat or drink anything. Sadly the answer is nothing. The mass is pressing on her stomach so much that she cannot get anything down. Her current pain medicine schedule was 60MG morphine pill every 8 hours and she could take .5ML of the liquid morphine every 1 to 2 hours as needed for pain. While the nurse was she said that she was not comfortable and the one thing that she kept saying was the she didn't want to be miserable. Unfortunately the only way to get her comfortable is to put enough pain medicine in to keep her mentally "out of it". She said that would be fine and she has been able to talk to all of her family in the last couple of days. At 2:30 pm this afternoon we increased her liquid morphine to 1ML every two hours and that has seemed to make comfortable. She has lost the energy to be able to move any parts of her body. If you ask her a yes or no question, she is still able to comprehend and answer by nodding or shaking her head. Her speech is very weak and we have to listen very closely if she says anything. Our families are taking turns sitting with her.

It has been comforting for us to be able to sit around here at the house and talk about all of the fun times that everyone has had with Carrie. Probably the most talked about story is our 17 hour drive from Columbia, TN to Miami, FL just to get on a cruise ship. It could be a movie by itself. Comedy of course.

As always, please remember us and our families in your prayers. It has been a tough day with the toughest yet to come. We rejoice that Carrie is just waiting on the Lord to call her home. We expect that to be in the next couple of days given how her health has declined. But she is one tough cookie.

I am trying to keep the blog updated daily. I know that a lot of people use this and I appologize for the updates coming so late at night.

We love you all and appreaciate everything that you all have done for us,

Jason & Carrie

Still Declining

I was planning on updating the blog daily considering how things have been going, but I just didn't get a chance yesterday. Carrie's health is still declining. She had some coke yesterday and it didn't stay down very long. She then was able to eat very small portions of mashed potatoes and cream corn. Her strength has greatly decreased and she is no longer able to get out of bed even with assistance from me. This morning she woke around 5am and said that her mouth was very dry. I gave her a little water and it didn't stay down as long as the coke did. We called the hospice nurse and she came by around 7:30am this morning. Carrie is still taking 60 milligrams of Morphine 3 times a day and now I am giving her .5 milliliters of liquid morphine every 1 to 2 hours as she needs it for pain. The liquid absorbs quicker and gives a quicker relief to the pain. Since she is not able to get out of bed she now has a catheter. Her oxygen level dropped a little bit to the low 90s and so Hospice ordered her an oxygen machine.

As I stated in the previous post Carrie is mentally and emotionally ready to go home to be the Lord. We are just waiting on His timing. I estimate that given her current physical condition that she has a couple of days to a couple of weeks left. Again this my estimation, and I have been known to be wrong on a couple of occasions. HA HA.

I am doing as good as can be expected given the circumstances. I had planned on starting a leave of absence on Monday but actually started yesterday. Both sets of Carrie's parents are here as well as my parents. So yes I have two sets of in-laws and my parents as well, the best way to describe it is like the family from National Lampoon's Christmas Vacation without the Christmas decorations. I am just kidding. I am glad that they are all here.

Please continue to pray for us and our families. The next few days are going to be tough. Thank all of you for your continuous support. We will never be able to thank everyone for all that you have done.

Jason & Carrie

Reality

Well it has been while since I have posted on the blog. Carrie has been handling most of the updates. Carrie asked me to write this update. So a lot has went on since the last one. This past weekend was pretty tough for us. Carrie had a couple of friends come in from Nashville and allowed me to go the Auburn/Florida game (War Eagle) and while I was at the game she texted me and told me that she was feeling pretty bad. She said on a scale of 1 to 10 with 1 being the best and 10 being the worst, she felt like a 12. The bloating that she has been having has become consistant and got a little worse. She said that she felt like if she swallowed a pill she would throw it back up. She called Hospice and the nurse came out and talked to her. Carrie has been taking 60mg of Morphine every eight hours and now she is taking it every two to four hours as needed. She has been getting a sharp pain in her right leg if she stays on it for too long. It has gotten to the point where she is confined to her bed and her portable toilet. This afternoon she was getting up to use the toilet and her legs gave out from under her and she fell next to the bed. This fall is nothing compared to the fall that she had earlier. No bumps or bruises but she was unable to get up off the floor. Carrie's mom and my mom were here but they were not able to get Carrie up. I left work and came home and get Carrie back in bed. I was planning on taking an extended leave starting Monday but I am going to start it tomorrow.

Please continue to pray for us. Saturday night Carrie and I were talking and she is beginning to wonder how much longer she has. The constant bloating is causing her to be pretty miserable and that is the one thing that she didn't want; to be miserable. She said that she is getting tired of fighting. We have some really rough times ahead. Her mom, dad and step mom are here now. Yes, most of my inlaws are here under my roof. :) Right now, we don't know exactly how much longer she has ( only the Lord knows that). And we don't expect it to be in the next couple days.

I wish I could have written a better update but we wanted to update everyone on everything that is going on. I will try to update the blog every couple of days to let everyone know how she is doing.

Thanks for all of the prayers, thoughts and support.

Jason & Carrie

Sorry so long to give update....

You'd think with all the spare time I've had lately would make it EASIER to keep the blog updated... wrong. So let's see - since last weekend's post, nothing too much has changed (I don't think). I did double up on my Lasix for about 3 days and that actually seemed to helped some. It drew some of the Lasix off my feet and lower ankles, and actually helped some. My upper thighs and pelvic areas still got somewhat swollen but not quite as bad . I emailed Dr. Johnson Monday morning and he said that was great news! He said from now on, weight myself in the morning and if I've gained a few lbs. I can double my Lasix every other day, or even just every other day.

So on one hand, that has improved somewhat. On the other hand, Its been a struggle (you guessed it) getting any strength back. The last few days I've had problems with a little vertigo, either my body wanting to fall backwards or forwards. I've lost some strength in my upper arms and back, making it harder to to use them to support myself (but no falls so far!!!). As a result, I've gotten a simple fold up walker to help stabilize myself and get around when needed. In addition, Alacare has given me a raised seat and bed side commode just in case I need either one to assist me.

Overall, not too much has changed. I pretty much have someone here with me at all times in case I need them. Since my scare at the ER, my breathing has been fine. I'm losing some water weight it seems. I'm still having the same bloating feeling in my abdomen/pelvic area, but I seem to be able to eat a little more, which is good.

On a side note, both of our birthdays were this past Wednesday (the 12Th) and they ended up being a really good day for both of us!! We had a really relaxing day, which is just what we needed :) Thank you for all the prayers you've sent our ways the last few days and please keep them coming - we can certainly feel their presence! We love you all and will try and do a better job keeping you updated! Oops!!

Local Oncologist

We finally have an established oncologist here in Auburn I can go to without having to go to UAB should something come up last minute. Its Dr. Brandon Johnson at the hospital and its the doctor who gave me the shots when I was traveling between here and Houston. He had already gotten some data from UAB so he knew about my case. Regarding my leg swelling and replenishing my albumen (the protein that's seeping into my tissues keeping my kidneys from allowing my kidneys from draining off the fluid), they could try that but the only effective way to do that is to take my OWN albumen and re-inject it into myself, which kind of defeats the purpose. He said the best way to build it up is to eat the junkiest, cheesiest, bad for you food :-) There's not really a way to actually drain off the fluid. The other suggestion he had was to increase my Lasix (basically double it) like we tried before but for longer and if need be add another diuretic to the Lasix and see if together they can push the fluid off.

He knew about my trip to the ER and he was able to check my blood counts, all of which were fine except my albumen.. he said I didn't need to make a follow up appt, just call him if something came up. Overall we liked him and felt comfortable. Even though we didn't get great answers we left feeling good we have a doctor here should something arise.

That's about all for now. I'm sure I forgot something, so when I remember or have something new to report, you know where to find it! And once again thanks for all your neverending prayers-we know without you guys and our love for Jesus Christ we couldn't have made it this far! We love you all and will keep you updated!

Sorry for the late update :(

Not much has happened over the weekend so I apologize for the late update. After the surprisingly short ER trip I tried to rest as much as possible. My mom left Saturday morning and I stayed in bed until AU played s. Carolina (War Eagle!) At 2:30. Somehow, I must have twisted my back and pulled a muscle on my lower right back. Nothing sever, but I did get a heating pad and pretty much slept the rest of the night. I woke up Sunday feeling much better. Ill use it maybe once a day if I feel it flaring up but it seems fine for the most part.

A nurse, Gladys, came by to check on my Saturday afternoon and helped clarify a few things for us. I am actually considered a hospice patient, not home health,simply because I'm not expected to improve. That doesn't mean I won't, but the criteria they follow classifies me that way.

I've been (of course) trying to build up strength and drinking Ensure drinks so get some nutrients in me. My nurse Joey will try and see me 3 tines a week for now. And we finally heard from Dr. Johnson (oncologist here in Auburn) so I'll meet with him Thursday afternoon and hopefully get things going!!

No Procedure

SO........After our visit to the ER last night, we paid another visit to the hospital this morning in hopes that we would get the fluid from last night drained off. They did an ultrasound and found that there was really not enough fluid to warrant doing the procedure. So we are back home and the Hospice nurse is here now checking on Carrie and we are working with our social worker on getting established with a local oncologist. As of right now we don't expect to have an appointment with one today but hopefully we will on Monday or Tuesday. We will update the blog during the weekend to let everyone know how we are doing.

New Record

Another exciting night at the Chavers' house. After I got home from work Carrie said that she had some pain when she took some deep breaths. When she stood up the pain increased and didn't ease when she laid back down. I called the home health nurse and we were told to go the ER. We were only at the ER for two hours. :) After talking to the doctor we found out that the fluid in her abdomen and the swelling she has had is two separate issues. We are going first thing in the morning to have the fluid in her abdomen drained off. It will be an outpatient procedure and hopefully not take too long. As for the swelling, Carrie has a low chemical protein in her blood stream that is allowing the fluid in the blood stream to move into her tissues in her legs and hips causing the swelling. I will be working tomorrow morning to get Carrie established here in Auburn with a local oncologist and hopefully get an appointment to get an IV treatment of the chemical protein. Hopefully this will allow the fluid in the tissues to move back into her blood stream and then to kidneys and flushed out I will update the blog to let everyone know how the procedure went and what we find out about the local oncologist and what we are going to do about the swelling in her legs. Please continue to pray for us.

Jason & Carrie

Still Fighting

We just wanted to give everyone a quick update on how I've been doing over the last few days since Home Health started coming out to see me. I met Joey, who will be my primary nurse, Monday afternoon. He basically went over the notes from the on-call nurse I met over the weekend (Amanda) to make sure he was up to speed with everything and clarify any questions we may have.

I'm still having the leg swelling and we told him Amanda had told me to double my Lasix over the weekend and wrap my feet and legs to try and push the fluid upward. That seems to have helped relieve some of the swelling/water retention in my feet and lower legs, but now it feels like all that fluid has collected in my thighs and lower abdomen. But the Lasix doesn't seem to be flushing that fluid out. As of right now, Joey is supposed to be coordinating with Amamda to see if they want to increase my dosage of Lasix or leave it where it previously was.

Other than that, no NEW problems have come up. I'm still having trouble regaining any strength/energy and it seems like every day becomes a little more of a struggle. I'm having to rely on other people more to help me - I'm still getting around okay, I just sometimes need that extra assistance. Luckily, we've been blessed with great family that have graciously taken turns doing just that.

Part of the services provided as a new Alacare Home Health patient includes a meeting with a social worker and chaplain, and they are supposed to schedule a visit with me today (Wednesday), and Joey is scheduled to see me again tomorrow (Thursday). I'm hoping tomorrow Joey will have some insight or suggestion or SOMETHING we can do to get the swelling under control, but we will of course keep you updated on anything we find out. Until then, please continue to pray for us and our families (as I know you will) and we will keep you posted. We love you all!

Latest Update, New Developments...

A few things have changed since our latest update this past Thursday... As you know, these last few weeks have been somewhat difficult and I've had trouble regaining my strength and energy. We've been becoming concerned obviously, but it was getting to the point where we were worried about me having the ability to make dr appts in UAB physically and getting around in general. Earlier this week they increased my Morphine to 60mg every 8 hours, and Friday afternoon my pain dr called to see how that was working and also see how everything else was going. I told him the pain dosage was good, but then I expressed our other concerns-lack of energy, not being able to eat much because of the bloating sensation, the leg swelling, etc. He immediately became concerned because it sounded like I'd developed a lot more severe problems since I'd last seen him and he was worried about me having to wait until October 5 to see them to address these issues. (BTW: I had emailed my UAB oncologist Thursday evening about our concerns and was waiting to hear back from her). After talking to the pain doctor for 30 minutes, we came to the conclusion that we needed to address things sooner and here in Auburn instead of Bham if possible.

As a result of our conversation, we decided it would be a good idea to look into Home Health to assist me here at home, especially since right now I don't feel comfortable being home by myself and being so weak. He helped me get in contact with a home health company here in Auburn, called Alacare. They contacted me Friday afternoon and set up an appt for Friday evening. A nurse came out and talked to me and Jason about what they do and how they can help us. Basically, they will have a nurse come to our house twice a week (more often if we feel we need it) to check my vital signs, medications, or anything that would involve needing assistance with here at home. They would help with any problems regarding pain management, nutrition, appetite, sleep, etc. In addition, if something were to happen (I.e. falling or fever) and we didn't know whether to go to the doctor or ER, we would call them first and they will send someone out first to assess the situation and help first.

After talking to the nurse for a little over an hour, we felt it was definitely in our best interest to do Home Health, especially with the way the last few weeks have gone. They will come out to the house twice a week to check on me and see how things are going. Right now, the biggest focus is my leg swelling, which has progressively gotten worse. I was told to double my Lasix dosage for 2 days (Saturday and Sunday) and wrap my ankles and lower legs off and on to try and relieve the water I'm retaining. When the HH nurse comes this week, they'll reassess the swelling and see if the wrapping/lasix is helping and go from there.

Other than that, it looks like I'll always have someone here with me at home for now, not because I need around the clock care, but in case something were to happen or I need assistance. My parents and in-laws have all graciously worked out a schedule with us to help stay with me. We are also going to establish a local oncologist here in Auburn so I don't have to rely solely on the one at UAB if I can't make that trip. We are still keeping a positive outlook on everything and are blessed with every passing day! These past few weeks have definitely been the hardest and most trying thus far, but thanks to all of your prayers and support, we can feel the Lord lifting us up and getting us through! We will keep you updated over the next few days and expect the HH nurse to come Monday or Tuesday, so we'll let you know what we find out then. We love you all!

Recovering still...

Well, it has been a week since my fall, but thankfully my body is recovering from that incident pretty well. My knee is still blue and purple, and the swelling has stopped. I can put most of my weight on it so it's getting stronger. And my shoulder is healing too-it's still a little sore, but much better in general.

Other than that, I seem to be doing okay. I'm still having a lot of swelling in my feet, ankles, and legs but I'm pretty sure that's just water retention. I hadn't been taking my Lasix (water pill) like I should have been, primarily from fear of becoming dehydrated. But I started taking it again these last few days so hopefully that will help with that fullness in my legs. I'm still trying to regain my strength, which seems to be the biggest struggle right now. But I'm feeling a little stronger every day so hopefully I'll start feeling more like myself soon!

I am scheduled to check up with my oncologist in Bham on Wednesday October 5, as well as my pain doctor. Until then, I plan on resting & regaining my strength. Thank you all for your continued thoughts and prayers and we will of course keep you updated! We love you all!

Slowly gettin there

Since my slight mishap Thursday evening, nothing else has happened Praise the Lord! Jason stayed home Friday to take care of me and he did a terrific job!! The swelling on my right knee didn't progress too far-icing it helped tremendously. Its still 50 shades of purple and blue, but other than that it looks like it'll be okay :) My left shoulder actually looks like it got hit the worst. It has progressively gotten a little more bruising & is extremely sore, but nothing was broken, sprained, or even dislocated from what we can assess. I'm still very tired & weak, but I'm resting as much as I can and like I said, Jason has done a great job of taking care of me & making sure I don't have another slip.

We will call my dr in Bham Monday morning to inform her of what happened (I know, should've called last Friday), and we'll let you know what she has to say. But we did want to keep you updated & reassure y'all that I'm indeed recovering from last week thanks in large part to all your prayers & thoughts sent our way. God is good!!

Little incident last night...

We had a little bit of an incident last night (Thursday night), but it appears everything is A-OK. As you know, I've been very worn down and simply lacking energy all week and yesterday was no exception. But I managed to rest most of the day so I didn't overdo anything. Yesterday evening, however, it somehow got the best of me... Jason came home from work and was headed back out to meet with some co-workers for about an hour or so. I was home with the dogs and went to get off the couch, which wasn't a problem. I got up off the couch just fine, but my legs must have just gave out from under me because the next thing I know, I'd fallen and almost all my body weight landed on my right kneecap. The rest happened so fast, I really can't say what happened. I scrambled to get up off the floor but I was so weak and somewhat hysterical by this point I didn't have the strength. I somehow tried, but lost my footing again and this time when I tried to stand up I instead hit my left collar-bone/shoulder on the corner of our wall. By this time, I'm just trying to get to my phone to call Jason which is on the couch. By the grace of God I find the strength to get my phone and call him-luckily he was only 3 minutes or so away. By the time he gets home, I've managed to get off the floor and onto my feet. He helped me lay back on the couch and luckily nothing appeared/felt broken or out of socket. My right knee was already swollen and all shades of blue & my left shoulder was scraped pretty good and sore, but that appeared to be it. I finally calm down and realize I'll be okay.

So, this morning everything still seems okay, thank the Lord. I'm definitely banged up and will have several nasty bruises, but nothing else appears to have been injured. I still don't know exactly what happened last night, if I may have simply blacked out for a milli-second from being so weak or just lost my footing... it all happened so fast and it mainly just scared us. But as scary as it was, it could have been a lot worse. The Lord definitely had His hand over me last night. Jason will stay home with me today to help me out & we'll see how the weekend goes regarding if he'll stay home some of next week too. For now, please continue to pray for restored energy and that these injuries don't progress. We will update everyone this weekend on my "recovery". Until then, I will take it easy and do my best to stay on my own 2 feet. Thanks again for all your pray and support. We love you all!!

Better but still weak...

Since this last weekend, I've improved significantly. I haven't had a fever since Sunday morning and the pain has pretty much returned to its' normal level (normal for me at least). I still, however, can't seem to regain much energy and feel very worn out and tired. I've been resting and trying to (for lack of better words) do absolutely nothing, but nothing seems to help. I'm eating small portions throughout the day so I'm getting some nutrients. I have contacted my oncologist at UAB about this past weekend and how things have changed/progressed throughout the week-I'm just waiting to hear back from her to see if there's anything to be concerned about (hopefully not).

We just wanted to give a quick update about how I've been feeling this week. I know a lot of you have been praying for strength for me to regain some of the energy I've lost and I ask that you continue to pray for that strength to return. I will update you again if anything comes up or changes, but for now, thank you all for thinking of us yet again. We love you all!!

Back and Forth....

There seems to be a pretty steady pattern of good days and bad days, going back and forth over the past several weeks. Last week was a considerably good week, without too many bad days. The trip to UAB last Wednesday wasn't even as bad as I had anticipated - it made me tired, but that was about it! SO... after a seemingly good week, I decided to try and spend a few days with some old friends this past weekend, relax and do nothing but enjoy their company. And that's exactly what I did - absolutely nothing but lie around, talk, and enjoy their company! Unfortunately, Saturday afternoon I started experiencing some pain and discomfort that gradually progressed throughout the day. By Saturday evening, the pain had started to radiate around to my back, particularly my upper back. It started out as just a bloated, full type feeling (which is nothing new), but it had progressed to a level that was actually painful and no longer just a "discomfort". I took some additional Oxycodone, but that honestly didn't seem to give me any relief. I checked my temperature and I had a fever of 99.8. By this point, I decided to go to bed and hopefully wake up feeling better.

Sunday morning I woke up feeling about the same. The pain wasn't any worse, but it definitely had not gotten any better. I checked my temperature and this time ran a fever of 100.2 - 30 minutes later, I took it again and it was 100.8. I took some Extra Strength Tylenol and put a wet cloth on my head/neck and when I checked my temp again 30-45 minutes later, it had come down to 99.2. Needless to say, between the fever and the pain, I hadn't really eaten very much in the past 24 hours, nor drank much because it only added to the bloating/discomfort. Sunday night I was able to eat something small and drink a little more, hoping to prevent me from getting weaker and dehydrated. I didn't run a fever for the rest of the evening and went to bed last night feeling slightly better.

When I woke up this morning (Monday, September 12), I felt considerably better compared to the last couple of days. The pain in my upper back had significantly improved. I'm still experiencing some pain from the bloating/discomfort, but I was able to eat a little for breakfast, hoping that will give me some nutrients and strength. Overall, today has been an improvement over the last few days, but I'm still feeling very weak and in a fair amount of pain so I plan on relaxing and hopefully regaining strength and just feeling better overall.

I will keep you updated on how I'm feeling. We know many of you have continued to keep us in your prayers and for that, we thank you from the bottom of our hearts. We love you all and are so blessed to have you in our lives!!

Easy Check-up

I went to UAB today for a check-up with my oncologist, and as expected, it was a fairly quick and easy appointment. My blood work all looked good - white blood counts, platelets, etc were all in normal ranges. My kidney and liver functions were good also. The urologist I met with a few weeks ago (on that painful day...) did talk to her and they both agreed to wait to change the stint when problems started to arise and since everything is good as of right now, we've all agreed to monitor my lab work and kidney function before changing it. I did mention to her the experience I had with the urologist and she said she will probably not be referring any more of her patients to him in the future. There is actually a urology oncologist that is a great doctor that she will try and refer me to when they do change my stint. Out of curiosity, I asked what my Mitotane level was (they had drawn blood for it before they stopped this last treatment)and she said it was only 5.7, which is actually lower than it was the time before. So that shows that even by increasing the Mitotane dosage, it still wasn't reaching the therapeutic level. Other than that, everything checked out fine. I will plan on seeing her again in 4-5 weeks for another checkup, unless something comes up between now and then. Thanks again for all your prayers over the past several weeks!

Spoke too soon...

Looks like I spoke a little too soon in my last post. Early Tuesday afternoon, I started having slight pain in my lower pelvic area, which I've had before so this wasn't a new pain. It's usually pretty mild and subsides within a day so I figured it would be the same this time. Well, throughout the rest of the afternoon, the pain got gradually worse. Jason ran me up to Walgreens to pick up some prescriptions and by the time we returned home, the pain had gotten much worse, to the point where it was actually sharp, shooting pain. I couldn't get comfortable and even laying completely still, I still had pain. I checked my temperature and it was 99.7, which is high for me. By this point, it was about 9PM and I really didn't know what to do - but I really didn't want to go to the ER. The only thing I could think of was to page the urologist on call at UAB, thinking maybe the stent was causing the pain. The doctor called back pretty quick (a different urologist than my usual one) and I told him what was going on. He said based on the symptoms I told him, he didn't see any need for me to go to the ER. He said to obviously keep an eye on everything, but if I could wait until morning and then see if the pain had subsided or fever came down he didn't see any reason to go to the ER.

Wednesday morning (yesterday) I woke up feeling much better. My fever was gone and the pain was MUCH MUCH better. It was still there, but nothing like the night before. I layed around all day (which is actually not anything new for me) and took it easy. Throughout the day, the pain returned somewhat, but it was very mild. I did however have a fever yesterday evening of 99.2, but that came down within a short period. (I also had a fever of 99.2 a little while ago - I took some medicine and will check it again soon to see if it comes down). I'm not sure why I've been running a fever off and on, but I will probably call my doctor and see if it's something to really worry about.

I've been a little more tired than usual, but I think that's partly due to whatever is causing the fever. I'm resting and relying on Jason for a lot of things, but we will update everyone soon and let you know how I'm doing. Thank you all for all your prayers. We know God is in control and continue to place everything in His hands!

Nothing new, just a quick update

As the title of this post suggests, there isn't anything new to report since my last post. I apologize for my small rant about the urologist last wednesday - it was just a very long day and I used the blog as a way to vent and get my feelings out. UAB is still an amazing hospital, and we really can't complain about one bad day out of two years of great doctors and wonderful hospitality. So anyways... since last wednesday, things have been about the same. I have my good days and bad days, but for the most part I've been relaxing and trying to take it easy so I don't wear myself out. I haven't really increased my pain medicines since my last appointment with the pain doctor. I may take an extra Oxycodone here or there if I feel I need it, but that's about it. I've been having a little more of the bloated, full feeling in my stomach over the past few days, but that comes and goes as well. My blood pressure is still staying normal so that's good!! My next doctor's appointment is next Wednesday, September 7 with my oncologist and it's just a check-up. Unless something comes up before then, we'll let you know what the doctor has to say next wednesday!

Jason has been an absolutely WONDERFUL husband and has really stepped up in helping around the house more. It's been difficult for me to ask for help doing things I used to be able to do so easily without assistance, but he's helped me realize I need him and I'm slowwwwlllly (haha) learning to rely on him more.

On a side note, Auburn football starts this Saturday and we couldn't be more excited!! The first few games are mid-day games so we don't plan on attending them, but we're ready to cheer on our Tigers from the living room couch just as loudly as if we were in the stadium!! War Eagle!!

Long day at UAB...

After all the positive things we had to say about UAB these last few years, today was definitely the exception. Don't get me wrong, we still think UAB is a great hospital and would recommend it to anyone, today was just a different experience than we've dealt with before. I had my appointment this afternoon with the urologist to discuss when/if to change my stint yet since it's been close to 3 months since it was first put in place. After waiting on the doctor for over 2 hours, I was (needless to say) starting to get pretty uncomfortable sitting in their chairs, and the pain was gradually getting worse just from having to sit upright for so long without much support. After waiting those 2, uncomfortable hours, the doctor finally came in to see us and talked to us for a total of maybe 5 minutes, to basically tell us that as of right now, he didn't see the need to change the stint yet, that they can go as long as 6 months before needing to be changed. He said he would talk to my oncologist and when she thought it was time to change it (whether due to urinary related symptoms or abnormal blood work), THEN they would look at scheduling a procedure to replace it. Then, the urologist asked if I would be able to lie back on the exam room table so he could examine my stomach. I told him yes, but I was in a lot of pain so it would be difficult. He still asked if I would lie down so I sat on the table and went to go lie back, but I was in so much pain I couldn't do it by myself. The doctor offered me his hand to assist me, but it was still too painful. I started to tear up and looked at Jason, who immediately rushed up and basically laid me back on the table. Once I was laid down, the doctor started pressing on my abdomen (and NOT lightly I might add), causing even more pain and more tears. And that was about it. The doctor didn't say anything or make any comments after pressing on my stomach, and Jason had to help me back into a sitting position to get off the table (the doctor simply offered his hand). He signed my check out papers and said he would get with my oncologist, and when needed, schedule to replace the stint. And then we were done...



So... although it's somewhat nice to know I don't have to get that changed anytime really soon (I wasn't looking forward to that), today felt like a wasted trip and the rest of the evening I've felt very exhausted and cannot seem to control the pain. I was running a slight fever earlier this evening, but we're keeping an eye on it and hoping it's just from exhaustion and a long day. We'll of course check it again in the morning, but we're hoping if I get a good nights' rest it will subside and I'll feel better in general. We will of course keep you posted if anything arises, but we're praying for a restful night and better day tomorrow!

Quick update, as promised

Nothing new to report, but I promised an update after the weekend so here it is... I increased my Morphine a little bit (as discussed Friday) and that seems to have helped. I don't have to currently take any pain meds in the middle of the night like I was before. As long as I take my pain medicine regularly, that seems to prevent it from escalating and becoming intolerable.

Other than that, nothing else has changed. I am having some swelling in my feet and ankles, primarily my right foot. I'm still taking the diuretic and my blood pressure has been staying normal so I'm not sure why the swelling is occurring, but it's gradually improving.

We will let everyone know what we find out tomorrow after my follow-up with the urologist.

Just a check-up

We went up to Birmingham last night for an early appointment with my oncologist this morning. It was just a follow up to see how my counts and other aspects for my blood work were. My liver and kidney functions were good and my white blood counts were fine, and everything else was at a good level. When I asked her about the ureteral stent they put in a few months ago, she said it does need to be changed every 3 months or so if it appears to be beneficial to me. I have an appointment next Wednesday with the urologist, and he will be the one to make that call, but since it appears to be helping it will more than likely need to be changed in the upcoming weeks. Other than that, she said there won't really be any need for CT scans, unless I just want one for my own reasons. So unless something comes up between now and then, I will follow up with her in 3 weeks on Wednesday, September 7.

I also met with my pain doctor this afternoon, and there is nothing new to report there either. We decided to increase my Morphine just a little at night because I've been waking up at night having to take more Oxycodone and I've had to increase the Oxy slightly during the day as well. We will try the increase in morphine for a few days and see how that works and go from there. Radiation is definitely still an option, but for now we're going to wait because it does have its' risks and don't want to involve them unless needed.

So unless something comes up, we're really just going to play it by ear and try to control the pain as much as possible. I have my good days and my bad days, which is of course expected, but we are just taking it one day at a time! Thank you all for your continued thoughts and prayers and we will let everyone know how the weekend goes. We love you all!!

No change in Pain Meds for now...

I talked to my pain doctor late Wednesday afternoon, and basically we've decided to stay on the current regiment of pain meds. It seems to help keep the pain much more tolerable and under control. If it becomes less tolerable or doesn't seem to be working anymore, I'll let him know and decide then whether we can alter the meds or if we need to try something else. If it becomes bad enough, I can still look into being admitted to the hospital for pain management assessment, which is more of a last option. So for now, we're just going to wait and see how this goes. I'm scheduled for a check up with my oncologist next Friday, August 19, and then with my urologist Wednesday, August 24, to check and see how the uretal stent seems to be doing. I'll give an update first part of next week about the pain, unless something comes up. Thanks again for all your prayers!!

Pain Update

My doctor from the pain clinic called me Monday to see how my weekend went painwise. I had increased my Morphine pills as instructed (2 at bedtime, then once in the morning and once in the afternoon) and took the Oxycodone as needed for breakthrough pain. Increasing the pain meds did seem to help some over the weekend. The pain never went away, but it did seem somewhat more tolerable. After telling him all of this, he suggested increasing the Morphine once again - 2 at bedtime, 2 in the morning, and 2 in the afternoon, essentially tripling the dose. If needed, I could still take Oxy for breakthrough pain if needed. We decided to try this for a few days and see how that helped and he would check in with me again Wednesday. He said this would be better than getting admitted for pain management - that's still an option, but if we can control it enough with the pills, that's a much easier option. I did increase my pills yesterday and today and it does seem to help, although still doesnt take away the pain completely, but I really dont know that anything will. Luckily, there is no risk of metabolising the meds - this dose won't effect my liver or anything like the Lortab had a risk of.

Other than that, not much new to report. The pain doctor will check in with me tomorrow and if anything changes, I will report the latest! I know a lot of you have been diligently praying for us and we appreciate that more than we can say. We will continue to keep you updated!

Newest Update

After a long day at UAB today, unfortunately we don’t have much good news to report. We met with Carrie’s endocrinologist first thing this morning and he didn’t have too much to say. Carrie’s blood pressure seems to have finally stabilized and has been good for several weeks now. It was actually pretty low today (91/64), which is VERY low for her. But since it’s stabilized, the endocrinologist said to stop taking one of the 4 BP meds Carrie has been on to see if it still stays controlled. He also said to increase her Prednisone (steroid) to see if that gives her more energy. That was about the extent of the “good news”…

Carrie also had her CT scan this morning and met with her oncologist a few hours later for the results. And the scans show that the treatment is not working. The mass on her left adrenal gland has increased from about 4 cms to over 11 cms since the beginning of June. Combining that with the masses on the right side of her abdomen, they’re basically overcrowding her stomach/abdomen area causing her so much pain. The treatment isn’t working and her doctor actually feels like treatment is causing most of her problems, like fatigue, dizziness, and lack of energy. (Carrie was up to 11 Mitotane per day, which is a VERY high dose). Unfortunately, we’ve run out of options and her doctors want to concentrate more on making Carrie as comfortable as possible and basically giving her the best quality of life they can and taking her off treatment will hopefully do that. Her oncologist called the surgeon that did her surgery 2 years ago to ask his opinion, but after looking at her scans, he said he would absolutely not recommend surgery because she would more than likely bleed out on the OR table. Based on where the masses are and the blood vessels surrounding them, surgery is way too risky and Carrie more than likely would not survive surgery. Radiation is an option to help maintain her pain level-her doctor called the radiologist and is waiting to hear back from him. For now, we are talking about possibly admitting Carrie to the pain management unit of the hospital at UAB for 24-48 hours and basically try different pain regiments to see which one works the best. For the weekend, they told Carrie she can increase both her Morphine and Oxycodone as much as she needs, and he would check in with her Monday and see how she was doing, and if need be, put her on the waiting list for admission to the hospital.

This was obviously not the news we were hoping for today, but we’ll take things day by day for now until we figure everything out. We appreciate all of your continued thoughts and prayers and we especially need them now. The Lord has blessed us beyond belief up until now and we have faith that He will continue to guide us through this. We will keep you updated and let you know how Carrie’s feeling early next week.

Round 3 of Chemo Completed

I finished my third round of chemotherapy this past friday, July 22. My counts were good enough to receive chemo - they did, however, give me a shot to increase my white blood cells as a preventative. So I will be off from chemo this week (YAY!!!!) and will return to UAB Friday August 5 for a CT scan and an appt with my oncologist. Pending the results from the scan, I'm then scheduled to receive chemo that friday as well. Until then, I will probably be doing as little as possible, considering my energy level is pretty much zero. I am up to 11 tablets (5.5 grams) of Mitotane. They checked my Mitotane levels July 1 and I was at a 5.8, which my doctor said was the highest she's seen this quickly (the level will be checked again on August 5). I've had a lot more fatigue and dizziness the last couple of weeks, most likely attributed to the mitotane and probably the chemo. I haven't fallen, but I have to steady myself alot and it's harder for me to drive, partly because I'm on pain medication and I'm not supposed to drive while taking them. This past weekend was a little rough, concerning abdominal pain, but today seems to be better. But unless something comes up between now and August 5, we'll update everyone then and go from there! Thank you all once again for your prayers. Please continue to pray for us as we wait these last few weeks to see how these drugs are helping (hopefully).

chemo continued

I started my 3rd round of treatment this past Friday June 15. I spent the week in Tennessee with my parents, which was great, and headed to UAB on friday. My counts were good enough for me to receive treatment and everything went fine. Jason's dad drove up to meet us and after treatment I had an appt with my pain doctor. It was basically just a checkup to make sure the meds he'd prescribed were working. He gave me an RX for some refills on the oxycodone and ritalin and I'm scheduled to see him in 6 weeks unless something comes up.

I returned home to auburn friday and spent the weekend recovering from treatment. It wasn't too bad of a weekend, I was just exhausted and spent a lot of it resting and taking it easy. I felt a little nauseous a few times. It was not enough to actually make me sick, but luckily I had some nausea meds left from last year that helped. My stomach has been bothering me off and on but nothing more than usual.

As long as my counts stay up I'll receive treatment this upcoming Friday June 22 and then I'll be off until august 5th, when I also get scanned again. We will update everyone if something changes or something comes up. Thanks again for your prayers!! Love to all!!

July 1st Update and Upcoming Schedule

Carrie met with her doctor this morning and we have made some adjustments to her medicine. The Tylenol in Lortab has decreased her liver function slightly. It is nothing to be concerned about now. The doctor is switching her over to a low dosage of Oxycodone to help get her liver function back up. Carrie asked about the swelling in her feet and legs and it is a side effect of the Mitotane and will probably get worse as Carrie increases the amount of Mitotane that she is taking. (She is currently up to 8 tablets of Mitotane per day - her doctor did do blood work today to check her Mitotane level, but it takes a week to 10 days to get those labs back.) Dr. DeShazo prescribed Lasix to see if she can reduce the amount of fluid causing the swelling. This can cause her to become dehydrated, which the chemo can do anyways, so they were leery to put her on a diuretic before. But the doctor consulted with Carrie's endocrinologist and they both agreed to try the Lasix to reduce the leg swelling. She will take it as needed, just not on days that she has treatment. They will also put her on a potassium supplement, since the Lasix will naturally deplete her potassium. Carrie's counts were good. Her white count was a little low but not enough to keep her from getting treatment today. As a precaution, they gave her a shot of Neulasta after her treatment today to help boost her counts. As for her schedule for the next month, she is off next week and then will be back for treatment on the 15th and 22nd of July. She will be off the week after that and then have treatment again on the 5th of August when she will also have a CT Scan and meet with her oncologist again.

As always, thanks for all your thought and prayers. Have a wonderful 4th of July weekend!

Counts were good!

Sounds kinda weird to be excited about this, but my blood counts were good yesterday so I was able to receive treatment! I received the full treatment yesterday (Friday June 24) and I am currently scheduled for another treatment next Friday, July 1. As it looks now, I will have infusion for 2 weeks, then have a week off. This will hopefully keep my counts from falling too low and prevent me from receiving any of them. I am feeling okay, just really worn out, but I've been trying to take it easy and relax. In addition to infusion on July 1, I'm also scheduled to have a check-up with my oncologist that morning as well. I've had a lot of swelling in my legs and feet, particularly my ankles and tops of my feet, which I will ask about. I still have the uncomfortable, bloated, pressure feeling in my stomach that doesn't seem to get any better, but I'm not sure they want to do anything about that yet. Unless something happens between now and Friday, we will update everyone after the doctor's appt and infusion at the end of the week.

No More Hair :(

Well, after a years worth of hard work, Carrie has lost her hair again. The new chemotherapy regiment has finally caught up with her hair growth and it started falling out this past weekend. By yesterday, Tuesday, it was coming out in pretty good sized patches. So last night, Carrie decided she wanted to go ahead and cut it off. She asked me to do it for her... so I did. She was somewhat prepared for it so she handled it pretty well. The hardest part was that it had just gotten to the point where it was starting to get long again. But we know it will grow back just as dark and beautiful as before! And she's beautiful inside and out, with or without hair. Luckily, she saved all of her scarves and hats from last time so she's pulled those back out to rock :) Other than that, she's doing okay. She's trying to rest up for infusion Friday morning and hopefully her counts will be okay!

Counts too low... treatment postponed

After a fun week spent with my mom in Auburn, we went up to UAB today for chemotherapy only to find out my white blood count was too low so they cancelled treatment for today. They have scheduled me to come back next friday instead for the third round. Until then, they told me to make sure I wash my hands and stuff like that and stay away from anyone sick or large crowds. I've had a pretty decent week otherwise. I'm still in a fair amount of discomfort but the pain meds seem to help somewhat if I stay on top of them. The Ritalin they prescribed seems to give me a little more energy-not enough to run a marathon, but enough to be up and about more. My blood pressure is still elevated and we cant seem to keep it down so my endocrinologist is running some additional blood tests to check hormone levels and see if something else could be contributing to it. Jason comes home from Orlando today so I'm looking forward to seeing him - he always makes me feel better :) I'm not sure if the delay in treatment today will affect my chemo schedule over the next couple of weeks, but I will email my doctor first thing next week to check. Until then, we appreciate all your prayers and will continue to keep you updated.

~Carrie

Round 2 Complete and New Meds Prescribed

After another long day spent in Birmingham, we are finally home in Auburn. We had to be at UAB around 8 AM this morning so we headed to Bham last night and spent the night so we wouldn't have to get up early and drive. Carrie had infusion therapy scheduled at 8:30 this morning. After she had blood work done, her blood counts were pretty good. Her kidney function had actually increased quite a bit since last week and her doctor attributed that to the stent she had put in last week. Carrie was scheduled to meet with her oncologist at 12:40, but infusion was taking longer than expected so her doctor actually met with us while she was completing her treatment. There really wasn't any new information. As long as Carrie's counts are good next friday, she will get the 3rd round of chemo, then take the following week off. She will then start again the following week for 3 more weekly rounds (so basically she'll be getting chemo 3 out of every 4 weeks for now). They plan on doing another CT scan about 8 weeks after the last one, then depending on those results, re-evaluate the infusion schedule. Regarding the Mitotane, Carrie is to increase to 6 pills this weekend and if she tolerates that okay, increase it by another pill by next weekend. She is scheduled to meet with her oncologist in 2 weeks, on July 1st.

Carrie also met with the staff at Palliative Care about her pain management. She is still considering a fair amount of pain/discomfort in her lower abdomen and pelvic area. The pelvic pain is more than likely attributed to the stent surgery so hopefully that will subside as she continues to heal from that. The biggest concern with the abdomen pain is the fact that it interferes with her eating and appetite. She feels bloated and full all the time, which gets worse when she eats. She's been on the pain patches, which are supposed to provide continuous relief, but she's still taking supplemental pain pills pretty much around the clock. This led them to think the pain patches are really working that well for Carrie. They've decided to discontinue the patches for now and try a low dose of morphine in a pill form that she will initially take at bedtime. She can still take the other pain pills she's been taking throughout the day. In addition, they've prescribed Reglan, which is basically used to regulate the gastrointestinal system. Based on the scans, it appears that one of the tumors is pressing up against her stomach, which could be the cause for all the discomfort. The hope is that the Reglan will help her GI flow naturally and hopefully relieve some of that pressure. The doctors said if that's the case, she should notice a difference within a few days. The only other thing they addressed is her fatigue and lack of energy. Even though some of the meds Carrie is on cause drowsiness and fatigue, they've decided to try her on Ritalin. It's typically used for children with ADD, but can also serve as a stimulant in adults to make them more alert and increase energy levels, which is our hope for Carrie. Unless something happens or changes between now and than, Carrie will follow up with Palliative Care the first week of July.

I will be headed to Orland this upcoming Sunday through Friday for a conference for work so Carrie's mom will be headed to Auburn to stay with her while I'm away and accompany her to UAB next friday for round 3 of treatment. My parents will then pick Carrie up from treatment friday and drive her to Brewton, where I will meet them on my way home to spend the weekend with my parents. Unless something happens between now and then, we will let everyone know how round 3 goes next friday. Until then, thank you all for your support and prayers. We love you all!!

End of a Long Week

Carrie had her ureteral stent put in Thursday morning at UAB and everything went fine. We got to the hospital at 8AM to get her checked in and they started prepping her around 8:30. We (myself, and Carrie's parents) got to see her just before they called her back, and she was sent back to surgery just after 10AM. The urologist who did the procedure called me around 10:45 to let us know that everything went fine and that Carrie was in recovery, waking up from anesthesia. She stayed in recovery for about an hour and we were then able to go see her and help her get ready to go. She was feeling pretty good for the most part - a little sore, but mainly just wore out from the medicines and last couple of days. They gave her a prescription for an antibiotic for 3 days, as well as pain meds in case she needed them. We left the hospital around 1PM and checked into a hotel for the night. Carrie was feeling good and even had a good enough appetite to eat lunch, and luckily, didn't have any nausea. I drove back to Auburn around 4PM and Carrie's parents stayed with her in Birmingham Thursday evening.

Friday morning, Carrie started her new chemotherapy regimen. She's been through several chemos before so there really wasn't anything new. She was informed she will more than likely lose her hair, but she's already prepared for that. And who knows, maybe she won't!! They gave her some anti-nausea medicine with the chemo and luckily she hasn't been nauseous from the chemo. It lasted about 3 hours total and then she returned home to Auburn Friday afternoon. She is feeling pretty good, mainly just tired and worn out, but we think that's from a hectic last several days and the procedure Thursday. We will return to UAB next Friday, June 10, for the 2ND round of chemo, to meet with her oncologist, and also to meet with palliative care about Carrie's pain management. Thank you once again for all the prayers! We can definitely feel them working in our lives!

Here we go again...

So our one day visit to get a CT Scan and see the doctor has turned into a three day adventure. The scans only showed a small amount(1cm) of growth since her last scan. This growth has been causing Carrie some pain and discomfort for the last few weeks. The scan showed that one of the tumors is pressing on the tube that connects her kidney to her bladder on her right side. This could cause a blockage that could in turn cause kidney failure. Right now all of her tests show that her kidney is functioning fine. As a precaution they have decided to insert an urinary stint. This will relieve the pressure on the kidney. The procedure will be tomorrow(Thursday) morning at UAB at 10am. It will be an out patient procedure that shouldn't take longer than 30 minutes if everything goes well. Now on to Friday. They are going to start Carrie on another infusion chemo regimen of Taxol and carboplatin Friday morning. They are typically well tolerated but she will probably lose her hair once again. Silver lining I get to shave my head again :) Chemo treatment will be every Friday for the next 3 weeks. If she doesn't have any major side effects, treatment could change to one treatment every 3 weeks. Dr. DeShazo( our Oncologist) is contacting the radiologist to see if they can do radiation again to treat the pain that Carrie is having. For now she has been prescribed pain patches. She is scheduling an appointment to meet with Pallative Care for pain management. Even the idea of Acupuncture has been mentioned. There have been talks of surgery and we got that clarified today. Surgery is not an option as a form of treatment of the cancer. They did say that surgery is an option if all other pain treatment doesn't work but only as a last resort. As of right now, Carrie will meet with her doctor again next Friday (6/10) and hopefully the Pallative Care doctor. OH, major upside all of this will be done in Birmingham, not MD Anderson. I will update the blog tomorrow afternoon to let everyone how the procedure goes.

PET scan denied

We were supposed to go to UAB today for a PET scan and CT scan, but they called Carrie a few days ago and told her the insurance denied the PET scan, for whatever reason. And since they cancelled the PET, we called and changed her CT to next wednesday morning before she meets with her doctor that afternoon. This way, it saves us a trip to Birmingham. So we won't have any new information until next wednesday, June 1, when we will of course let you know what the doctor says.

Post Yardsale Update

May 21, 2011 will be a day that Carrie and I will never forget. We will never be able to say thank you enough to everyone that donated merchandise, bought merchandise, and worked the yard sale. We would like to say a special thank you to Sharon Bailey, Karie Dalton, Teri Dunaway, Dr. Merrilee Holland and Leanne Greene for putting it all together. Thank you to Pangea for coming out and playing. The music was great. The Lord has blessed Carrie and I beyond measure. We have the most wonderful friends. Thanks for coming out and spending your Saturday working the sale and supporting us. To the College of Veterinary Medicine, I can honestly say that I work with and for the best faculty, staff and students in the world.

Starting Mitotane... again

I met with both my oncologist and endocrinologist at UAB yesterday, and after consulting with both of them, I have started the Mitotane treatment. My endocrinologist will primarily be monitoring my blood pressure, cholesterol, and thyroid. My cholesterol and thryoid seem to be under control, but he said it was a good idea to continue taking the medicine for them just as a precaution. My blood pressure is still running slightly high so he increased the dosage (he said the dose MDA put me on was "wimpy") and said to email him a few times a week with readings I take at home and he can adjust the dosage accordingly. In addition, he has started me on Prednisone. which is a hormone replacement since my body will stop making it on its own once the Mitotane gets in my system and suppresses the adrenal function.

My oncologist has started me on the Mitotane again as well. She's started me on a slightly lower dose than MDA recommended, but I will increase the dose every 3 or 4 days as long as my body seems to be handling the medicine. I am scheduled to see her in two weeks, on June 1. She will do blood work and check my levels, and basically see how everything is going. In addtion, I am scheduled to get both a PET scan and CT scan done next friday, May 27. I haven't had a PET scan since January 2010 when they discovered the cancer had returned. She's not looking for anything specific, but my last CT scan was at the beginning of April so she wants a fresh scan that she can also use as a baseline for this treatment.

As weird as it sounds, we're excited to get this treatment started. We are praying that my body tolerates the medicine well and that there are miraculous results!! Thank you once again to all of you that have kept us in your prayers and as usual, we will keep you updated!

UAB Doctors appts scheduled

Carrie finally got in touch with her oncologist at UAB... sort of. Carrie called today to see if her doctor got the email from last week about the treatment plan, and this evening her doctor finally emailed back. She hadn't received the email from Carrie's doctor at MDA about the treatment plan, but was able to squeeze Carrie in to see her at UAB this upcoming wednesday. Carrie was able to explain enough of the new plan through emails to inform her doctor of everything and she seemed to be in agreement. So Carrie will meet with the oncologist, as well as her old endocrinologist, at UAB this wednesday, May 18. Hopefully, they will be able to figure out the exact schedule for this treatment and get everything started! We will keep you updated wednesday evening about what happens wednesday.

FINALLY!! Some promising news!!

Well, it looks like this trip to Texas may not have been a wasted trip after all. I met with the gastrointestinal doctor this morning and liked her immediately. And the first thing she said to me after she introduced herself was "Why haven't you been sent to see me before now?!?!" Apparently, she is and "expert" in ACC and is pretty much the doctor to see at MD Anderson for ACC. She has seen over 300 ACC patients in the past few years, and said that on her clinic days, there are usually 2 or 3 patients in the waiting room with ACC. (Now why NOBODY has referred me to her in the past year and a half since I first came to MDA is beyond me, but we're just glad we finally got in contact with her). She spend about 45 minutes talking to us and went over all of the regular protocols for treatment of ACC, in order of most effective. She agreed with the treatments I had previously had for the most part. However, Mitotane is still considered the standard of care. She explained that patients typically take 3 grams of Mitotane when the disease is not evident (i.e. after it has been removed surgically, which was my case when I initially started the mitotane). After the cancer returns, however, the dosage of mitotane is supposed to be titrated upwards until it reaches a level of 14-20 in the body. At that level, she has seen stablization of tumors and in a few instances, some shrinkage. When I was on the mitotane initially and the cancer returned, we didn't increase my dosage, which could be why we didn't see good results.

That being said, the GI doctor recommends we try the Mitotane again, this time starting at 3 grams/day, and increasing my dosage every week until the mitotane level in my blood reaches 14-20. She said depending on how my body absorbs the medicine and how bad the side effects get, it could take UP TO 3 months to reach that level.

In addition, she told me about 5 different chemo regimens that could be used in conjunction with the mitotane. This step would only be taken if there was a delay in getting my mitotane level up - they would essentially use the chemo to buy me some additional time to allow the mitotane to get to the desired level.

Needless to say, we were very pleased with this news. We found out we still have some options to try and there is still hope! And this would allow me to do treatment at home in Alabama!! The GI doctor seemed very willing to collaborate with my oncologist at UAB in helping monitor and conducting this course of treatment. And I can still come out here for check ups in the meantime if need be. I've emailed my UAB doctor and hope to get in touch with her in the next few days and hopefully start next week.

Obviously, we hope this treatment works. The doctor did emphasize that this is not a cure for ACC. But the hope is that the mitotane turns this from a life-threatening disease into a chronic, manageable disease that I can live with. If this treatment doesn't work, she did say I could still potentially participate in the clinical trial that's currently on hold if/when it becomes available in the future. In addition, she was aware of the Phase III trial that's being conducted at Vanderbilt (the one I didn't qualify for) and said they were making quicker progress than initially expected. Apparently, they've had more participants join faster than expected and showing good results, which is great news because that means it's close to potentially being available as a standard of care!!!

Overall, we were VERY pleased with the doctors today and the news they gave us. It's very upsetting that we weren't put in touch with the GI doctor sooner, but feel very blessed to see her now. (BTW I also met with the endocrinologist and he basically agreed with this treatment plan). The most important thing is now we have hope - we have something to try that seems promising and we know that we aren't at the end of the road. We were starting to get discouraged from running out of options, but now we have options! So thank you to everyone who said a prayer for us these last few weeks. They really do make a difference!! As long as my oncologist at UAB agrees with this treatment (which I have no reason to think she won't), hopefully things will start going within the next week. I will keep everyone updated as soon as I hear something!!

Oh quick side note... because my blood pressure is so elevated and my ankles swollen, the doctor today decided to draw blood to check my hormone levels to see if that could be causing either of those symptoms. It will take about a week to get all the results back so I should know by the end of next week about that. I'll of course keep you updated!!

Tuesday, May 10, 2011

I met with my regular doctor out here at MD Anderson yesterday (monday) and he told me that the clinical trial they wanted me to participate in is still in the process of being approved for the changes so that's still on hold. Unfortunately, he doesn't know of any other trials currently available for me to try. He has referred me to an endocrinologist and gastrointerologist(sp?), both of which have experience with ACC. I will meet with both doctors tomorrow (wednesday May 11) to see if they have any treatment options for me to try. We're praying they do... if not, we're going to really have to figure out what steps to take next. I will be flying home tomorrow night.

My blood pressure is still staying high, even on the blood pressure medicine. In addition, my legs, particularly my feet and ankles, have been swelling a lot, which is apparently caused by the high blood pressure. They have switched my blood pressure medicine in hopes of lowering it some more and helping with the swelling. I'm still having pain in my abdomen, and it's gotten slightly worse over the last few days. I'm still taking a mild pain medication for it, but it makes me drowsy so I don't take it all the time. The doctors said to monitor my pain level and if it gets worse, let them know and we'll see what else we can do.

We will let you know what we find out from the doctors tomorrow, so you can look for an update wednesday evening, thursday morning at the latest. Please continue to pray something opens up for me to try!

MD Anderson... again

Sorry for all the back and forth, but Carrie found out Tuesday morning that her doctor at MD Anderson would like to see her at the beginning of next week for a consult. His administrative assistant called Carrie to set up appointments. Carrie asked her if the doctor found some other trials she can try, but all the assistant really knew was that the doctor wanted to consult with her about her options. So we don't know what exactly that means. That being said, Carrie will meet with her regular doctor out there Monday, May 9. She then has a follow-up appt with her pain med doctor Tuesday, May 10. Finally, she has 2 appointments Wednesday May 11 - one with a gastrointerologist and one with an endocrinologist that "specializes" in patients with ACC. All we really know right now is that these are just consults-we aren't sure what information they have for us. So Carrie will be flying out to Texas (I will not be going with her) Sunday afternoon, and flying back home late Wednesday night. We are hoping after these appts next week, we'll have a better idea of what our options are, and finally begin to look toward what the next step will be. We will keep everyone updated next week as we get information. Thank you all for your diligent prayers!!

And back to square one...

Carrie may not be going back to Texas after all... at least not immediately. She emailed her doctor at MD Anderson today since she had not heard anything since last week. Shortly thereafter, she received a phone call from the trial coordinator and was given some new developments with the new clinical trial Carrie was going to participate it. Apparently, the drug company sponsoring the trial has decided to increase the dosage of the medication (for whatever reason, which we don't know), as well as change a few things, such as different tests they want to run and the amount of blood they would draw. As a result, all of these changes have to be approved by some board and these changes usually take at least a month to be approved, if not longer. That being said, there is no way of knowing when Carrie would be able to start this trial. She still has a spot in the trial and once the changes are approved, she would be able to start. Her doctor, however, is concerned about Carrie possibly going for an indeterminable amount of time without ANY type of treatment in the meantime. And unfortunately, Carrie's doctor doesn't know of any other current trials that she could participate in. He suggested Carrie get in contact with her oncologist from UAB and see if there were any other options there.

So it seems we really are back to square one. We were optimistic about this new trial, but we are concerned about going without treatment for what could turn out to be weeks or even months. The only other option would be to start taking the Mitotane again. Carrie emailed her doctor at UAB this afternoon and will hopefully hear back from her early next week. Until then, we're just going to pray something opens up and we can get back on track. We will update everyone as soon as we hear something.

Back to Texas we go...

Well, it looks like Carrie will be participating in the new clinical trial at MD Anderson sometime in the next coming weeks. After looking into the trial at Vanderbilt, she doesn't qualify to participate because she has had too many prior treatment protocols. So we've decided to give this new trial at MDA a shot. She has to contact the trial coordinator and figure out scheduling and all the other details, which we hope to have figured out by middle of next week. If everything goes as we're suspecting, she will start around the 2nd week of May. It will be very similar to the trial she just came off of, with once weekly infusions. She'll meet with her doctor every 3 weeks and get scanned every 6 weeks to see what kind of progress she is making.

She has been home since last Thursday and has really enjoyed spending that time here in Auburn without having to travel. The pain she was having last week seems to have subsided. She's still experiencing some mild to moderate stomach discomfort, but the medicine they gave her last week seems to help somewhat. The doctors said from the scans it appears a tumor is pressing up against something, causing the discomfort, but hopefully it won't get any worse. We are still monitoring her blood pressure - it's come down a little bit, but it's still running high so they'll keep her on the medicine for now. Other than that, she's feeling a little more tired and run down than usual, but she's still being as active as possible. We're trying to keep our spirits up and pray that this new trial brings miraculous results!

We will of course keep everyone up to date once we get more details regarding the trial. And as always, thank you all for your continuous thoughts and prayers.

Last update from Houston (for now)

Carrie met with Dr. Naing today and the last treatment that Carrie had (last Wednesday) was her last treatment for this trial since the tumors are still growing. We found out today that Carrie has been accepted into the new trial that just started at MD Anderson. We also mentioned to the doctor about a trial that is currently going on at Vanderbilt( Thanks LeAnne). He said that it would be a good idea to look into that trial. I will discuss the two trials in a second but first, Carrie and I will be driving back to Auburn tomorrow and will be there for at least 3 weeks. The three weeks will allow her body to get rid of the current chemotherapy.

So now for the trials:

Vanderbilt - Phase 3 trial double blind placebo controlled and is given orally. It is targeted specifically for ACC. That is all we know about it at this time. We will be getting more information about it in the next couple of days and I will update the blog when get the details of the trial.

MD Anderson - Another phase 1 trial. It will be given through IV. Drug is not targeted toward a certain cancer. We do know that one patient at MD Anderson had ACC and after the first cycle showed that the cancer cells appeared to be dying. They were taken off of the trial due to a side effect that may or may not be related to the chemo. So far there have not been any side effects that are usually associated with chemotherapy (hair loss, nausea, vomiting). The drug will be given once a week for six weeks and then Carrie will get a CT scan. If we decide to do this trial, Carrie would start treatment no earlier than the first week of May.

Side notes - Carrie has had elevated blood pressure for the last couple of weeks and was perscribed high blood pressure medicine (Norvasc) to help stablize it. They were not TOO concerned but want to keep it under control. Carrie experienced some pain in the right side of her abdomen starting yesterday (Tuesday) and lasted through the night. She felt better this morning and the doctor thinks that it caused from the tumor being up against a nerve. They gave her a perscription for a high dose of Lortab.

That is all of the information that we have right now and will let everyone know once we get more info. Thanks for everyone's thoughts and prayers through this trial.

Stay tuned......

Hematologist Results

I met with the hematologist at MD Anderson Tuesday to address the blood clot my doctor saw from my last scan. And the good news is that I do NOT have a blood clot! He pulled up the images and although it appears to look like a small clot, the hematologist said it was part of the tumor that has worked it's way into my blood vessel. He called it a tumor thrombus, and that small pieces of the tumor have sort of congregated together. So they are obviously not going to put me on blood thinners since there is no clot to worry about!

On a quick side note, I had treatment #3 of this cycle this week and my blood counts were great once again! I haven't had to get neupogen injections in 3 weeks now!! :)

A little more info...

Not much to report, but I just wanted to give a little more info about the next few upcoming weeks. We only have 2 more treatments of this cycle before I get scanned again. Treatment #3 will be this wednesday, March 30 and the last one will be the following wednesday, April 6. I will then get scanned the following Monday, April 11. Jason and I will be flying out to Texas the morning of the 11th and will be staying through Wednesday April 13, where we will meet with my doctor to get the results. If these last 4 treatments show continued growth, our understanding is I will no longer continue with this trial. We still don't have any information on the other trial they hope to involve me in, but hopefully we'll get some soon. As of right now, we are tentatively planning on returning to Auburn after the 13th for at least the 28 day "washout period" required between trials.

Also, we failed to mention after the results last time that the scan showed what appears to be a small blood clot in one of my blood vessels. If I remember correctly, I believe it was in my superior vena cava. The doctor said it was very small and doesn't appear to be causing any problems. He is, however, referring me to a hematologist there at MD Anderson to determine if they will put me on blood thinners to try and dissolve it. I will meet with that doctor tomorrow, Tuesday 3/29, and let everyone know what we find out.

We are doing pretty well overall and trying to keep our spirits up! We still aren't sure what we're going to do about this other clinical trial, but we're hoping to get some more information on it soon so we can figure everything out. In the mean time, I am REALLY looking forward to being able to spend 4 weeks at home in Auburn... there's no place like home :)

Cycle 6 results

We met with the doctor today and wish we could have gotten better news. The growth this cycle was 8% which brings the total to 16% since she started the trial. We were told the trial has only slowed the growth but that it is not stopping it. He suggested that we do one more cycle (4 weeks) and then we will do another scan and if nothing changes this will be the end of this trial. There is a possibility that there might be another trial opening up in a couple of months that Carrie might could get into but not to get our hopes up as it is a brand new trial. After this next cycle Carrie will be back in Auburn for at least 28 days and then we will decide whether or not to continue with the next trial (if it available).

Results Coming Soon

Well, we are nearing the end of this cycle. We took a week off from treatment this past wednesday and instead spent the week in the Smokey Mountains with Carrie's parents and brother. And it was such a great break from the usual routine of traveling back and forth to Texas. It was a much needed break and hopefully will rejuvenate us for a while.

Now it's back to the grind... Carrie will fly back to Texas this Tuesday and have her last treatment of this cycle on Wednesday, March 9. She will then have her CT scan done Thursday morning, March 10. I will then be flying out to Houston the following week on Tuesday, March 15. We will meet with Carrie's doctor for the results of the scan on Wednesday, March 16, and pending a good report, she will start the next cycle of 8 rounds that afternoon.

We have been doing this trial for 6 months now and it's really starting to take it's toll on us. We've been very fortunate that Carrie has been able to travel back and forth as much as she has. The only side effects she's had have been decreasing white blood counts. Thank you all for your continuous thoughts and prayers. Unless something happens, we will let everyone know the results next Wednesday, March 16.

"Counts" Roller Coaster

Well, once again, my counts are down. My white and red blood counts are low, but they've been steady over the past several weeks. My platelets have dropped significantly to 87 (they had been in the 120s up until now) and my neutrophiles are once again below 1. Last week they were at 1.07, which was barely safe, but they did the full chemo treatment and apparently knocked my neutrophiles down even further. As a result, they (once again) held part of my treatment wednesday, making this the 3rd time in the past 2 months. I received the investigational drug, but they did not give me the Temsirolimus. Next week, I will meet with the doctor before I receive treatment to make sure my counts are safe. If they are, they will once again lower the dosage of the Temsirolimus before they give it to me. In the meantime, I am once again receiving the 3 day shot of Neupogen to increase my neutrophiles. Hopefully my doctor can figure out a dose he can safely give me without causing my counts to drop and cancel treatments!! I will keep everyone posted when I see the doctor next wednesday.

Counts are back up!!

I met with my doctor today before chemotherapy and my neutrophile counts have bounced back to a healthy level. They have decided, however, to lower the amount of drug I receive in hopes that my neutrophiles won't drop again. They will of course monitor my counts every week and if they drop again, they'll have to consider lowering the dosage again. Until then, treatment will continue as scheduled for the next 5 weeks, then I'll get scanned again around the beginning of March. We will keep everyone updated on anything that happens between now and then. Otherwise, we'll let you know what March brings!!

Low Blood Counts... Again...

After a good report last week and increased blood counts, they once again have fallen into the low range. My neutrophile absolute count (aka white blood cells that fight infections) was even lower than it was 2 weeks ago when they had to alter my chemotherapy treatment. It was 0.66 and the normal level is at least 1.7. The nurse talked to my doctor, who initially said to cancel the entire treatment on Wednesday, but then decided to just give me the investigational drug and skip the other one. And, once again, I was told I would have to receive a shot over the next 3 days to increase my neutrophiles. Luckily, I was able to get in touch with an oncologist in Auburn to receive the last 2 shots so I could still come home to Auburn for the weekend. As a result of low blood counts twice in the last couple of weeks, I am now scheduled to meet with my doctor this wednesday to see what he plans to do. More than likely, they will have to adjust the dosage on the FDA regulated chemo drug, since that's what appears to be causing the problem. Until then, I've been told to stay away from large crowds and especially anyone coughing or appearing to be sick... not the easiest thing in the world to do, especially since I'm flying so much. But hopefully wednesday will give us some answers and the doctor can fix the problem!

Live from MD Anderson....it's Wednesday's Results

Just met with the doctor and the scans show that Carrie's tumor has another 4% growth for a total of 8% since she started the trial in September. 8% is still lower than 20% so we are scheduled to start round 3 this afternoon. On the upper side of things we were told that Carrie could take a week off if she wanted to, just to get a break from having to travel and getting treatment. The doctor said that it would only push the treatment back one week but would not effect her results. So now we are looking forward to taking a vacation sometime in the near future. Carrie's cholesterol appears to have leveled out and is back to normal but will continue taking medicine for it. White blood count is back up to where it is supposed to be. Her thyroid stimulating hormone is high (aka Hypothyroidism) so they are prescribing her medicine for that.

We asked how the trial was going in general and the doctor said that he had 6 patients that were all in the stable state (less than 20%), one of which has been on the trial since March 2010. The doctor said once they have 5 more patients join this trial, then they can look towards sending the data and results from the trial to some medical board (who exactly, I don't know). Then, they can look towards possibly starting Phase II of this trial, which potentially means other hospitals may be able to start administering this treatment (and hopefully UAB would be one of them!!). The doctor did, however, say that it would probably be at least 8 to 10 months until the got those 5 additional patients and could send the data in. But we're optimistic!! :)

And finally, I would like to say WAR EAGLE to our guys for winning the national championship. I am not a huge fan of Facebook but it was nice to celebrate with friends through it since no one in Houston Texas cared who won. We cannot wait to get back to Auburn and celebrate the right way even if we are a few days behind. We will be driving back to Auburn tomorrow and Carrie will be in town through Tuesday.

Almost postponed...

I was supposed to have my 8th (and last) treatment for this cycle Wednesday Jan. 5. But when my lab work came back, they discovered that my Neutrophile Absolute Count (aka ANC and has to do with my white blood count which helps fight infection) was below 1 and it has to be at least 1 in order to receive chemo. The nurse paged my doctor so see if I could receive chemo and they finally decided they would go ahead and give me the investigational drug, but would skip the other chemo since my counts were so low. In addition, they decided to give me a 3 day dose of an injection called Neupogen, which will hopefully increase my white blood count. I received the first shot Wednesday, the second one yesterday (Thursday), and the 3rd one will be given today. I'm feeling fine for the most part - just really tired and worn down, but that's probably because my counts are down. I just need to be careful not to be around anyone that's sick because I am much more susceptible to getting sick with my counts so low. I will still meet with my doctor next Wednesday Jan. 12 for the results, as well as see how my counts are. Thank you all for the prayers and we will let you know Wednesday what we find out!!