Friday, October 30, 2009

An Emotional Day

A week full of ups and downs, mentally and physically. You know, as I have tried to relay in this blog from the beginning, I know God has a purpose in everything He is working in my life. I know His ways are higher than anything I could imagine or even desire for myself. His grace from the beginning has been sufficient. When I have been overwhelmed He has shown through. Sometimes just opening my eyes and letting me see, sometimes through the words or gifts of a friend or family member, sometimes by just glancing at a stranger in their own situation. But one way or another His grace has been sufficient. Our lives can change so drastically, without notice, without warning, without choice. Years of "normal" are no longer the "real normal". Life, or at least my out look on life, has changed over the last year, never, I'm sure, to go back to the "old outlook". Once again at the end of the day today I can stand and say God is sooo good to me. I am not alone. He has cared for me.
This blog entry may seem a little strange today, today has been kind of a strange day for me. Emotionally this journey has been long at times. I have known all along My God is in control and whether my desires are being met does not mean the very best God has is not being done for me. His ways are higher than mine, even though in my finite mind I sometimes question, But oh how faithful He has been!!!
I have been experiencing bad night sweats for several weeks now that make for pretty restless, sleepless nights. I got up twice in the middle of the night last night and took a shower!!! I think they might be a result of the strong antibiotics I have been on. I am through with them now so maybe the sweats will go also!!!! I had a check up appointment with Dr. Boppanna, the radiation oncologist, yesterday. Everything is going fine from his perspective. He will schedule a PET scan in a few weeks just to make sure....no cancer....
I don't know what was going on with my hormones...emotions...today. Whew!!! My poor family. I honestly don't feel I have been that emotional on this journey until the last few weeks and something has happened!!! The flood gates were opened and the stop gate is hard to find!!!! I really believe it has a lot to do with the strong medications I have been on and the result of coming off them!!!! At least I hope so!!! Boy this would be a BAD new normal!!!!HAHA
Wendell had gone to work today, Kiah was at school, and Jess and Punky had the great privilege of being here with me today. As I sit here tonight, feeling ok, I can't help but grin just a little at the absurdity of the day today and how totally at a loss Jess and Punky must have felt at my babbling!!!! Like I said before, I think it has a lot to do with the medications at least I hope so!!!! I was an emotional wreck for most of the day today. The flood gates opened and I was ill-controlled to stop them. Physically I just felt miserable, Mentally I was way past physco!!!! I, now in a perfectly normal state, (for me anyway), can see myself laying in bed unable to control my emotions, (translation = crying like a baby), and Jess and Punky standing at my bedside ready, waiting, eager, desiring to do anything and everything that would help restore my sanity!!!! My poor family!!! They are sooo precious!!!! They have been through so much!!!! I am soooooo Blesssed to have them. Finally, after more meds I was able to sleep most of the day and feel fine tonight, other than the guilt of my making them feel so helpless today. Sorry girls!!! I Love you sooo much. Thank you for taking such good care of me.

Sunday, October 25, 2009

Things Are Going Well

The home health nurses came and set up Wendell with the antibiotics I need. Everything has been going well with them. I have today's dose and tomorrows and then I will be finished with them. I have an IV pole here and my port has been accessed since I was in the hospital so all Wendell has to do is sterilize everything and screw the ends of the antibiotic tubes onto the ends of the port lines and I'm good to go!!! I am taking two different antibiotics that take about 45 min. to an hour to administer, each.
Dr. Seifker, the ENT from Florida, has been a real blessing. We feel the Lord sent us to him. He has called Wendell's cell phone everyday since we returned home to check on me and order meds he thinks I need. He has started me on a steroid to loosen up my neck, It has been so hard and stiff for months now. It makes my throat feel constricted, which in turn makes it hard for me to swallow. After Dr. Seifker cleaned out the infection and started me on the antibiotics my jaw and neck loosened up some, and my mouth even opened more than it has in the past. After one day of taking the steroids my neck already feels more mobile. I will be taking them three times a day for five days so we will see what transpires!!!!
Our visit to Dr. Netterville went well. He took a metal probe and stuck it about two inches into the hole in my neck and searched for infection, he asked "Are you OK?" To which I replied "I'm fine" To which he said, "I wasn't asking you, I am worried about your husband!!!!" Wendell said the whole experience was pretty gruesome!!! Luckily I could barely feel it. All went well, Wendell stayed conscious and Dr. Netterville could find no infection. If all goes well, I will not go back to Dr. Netterville for another check up until January.
I have a visit with Dr. Bopanna, the radiologist, sometime the end of this month, I'll have to double check this one. And then in about another month I will go for the PET scan.
I am eating pretty good now, it still has to be pretty moist but swallowing is slooowly getting easier. As far as my taste buds go... if the flavor is real strong I can taste it some, otherwise food is still pretty bland.
James and Glenda cooked lunch and brought to us this week. We insisted that they stay and eat with us!!! We really enjoyed the company and the food was great. They made salad and Lasagna and bread, and a wonderful cream cheese desert, (which I finished off for breakfast this morning!!!!) Thanks!!!!
The Girls have all left for church this morning. I really miss going. My energy level is not real good yet but seems to be getting a little better the last few days. I am also alittle afraid of all the "stuff" going around. So maybe in a few more weeks. Wendell is trying to get my antibiotics administered so he can maybe make it in time for the morning worship service. I hope so.

Wednesday, October 21, 2009

Back Home

We arrived back home in TN. Sunday night. The home health nurse came Monday and taught Wendell how to administer my antibiotics, I will be taking for the next ten days. My neck is starting to get stiff again and I am wondering if the infection is starting up again. I have an appointment in Nashville with Dr. Netterville tomorrow. I am anxious for this appointment. I have been feeling pretty rough and am in the hopes he will be able to get me on the mend again. I'm just not convinced this infection is still under control. I cancelled the appointment for the feeding tube that was scheduled for yesterday. I am waiting to see what Dr. Netterville thinks on the matter. I have been able to eat a little better lately and think I might not have to have it after all. I am really concerned over this infection, since being discharged from the hospital, I don't feel as if I am getting any better. I actually feel as if I am getting worse. I guess I will find out tomorrow. Thanks for your prayers.

Saturday, October 17, 2009

Sobering Words

I had my second surgery yesterday. It was scheduled for 4:00 p.m. so I was elated when they came and got me at 9:00 a.m. It was such a relief to get it going. They did it under local anestesia again although this time it didn't go as well. I woke up in the middle of it!!!!! The pain is indescribable!!!! This is the second time I have woke up in the middle of a surgery. The first time was about 10 years ago when I had a hystorectomy. It is something I will not forget. Anyway, he cleaned out the paritoid gland and the infection again and removed the drainage tube. They allowed me to be discharged and come back to the condo last night. I had to go today to the Infectious Diesease Doctors office and again tomorrow before we start back to TN to get antibiotics and fluids. I felt worse this morning than I have felt in a long time but am starting to feel a little better now. The infectious disease doctor informed Wendell & I yesterday that this was a very serious "life threatening" infection. But it is now under control. Boy those were sobering words. "Life Threatening". I know as always God has a purpose for everything but sometimes I start to question what it is. Sometimes He sheds light on it for me and sometimes I just continue to trust. I was having problems understanding why I had felt on the mend before we left home and then get here on a much desired vacation only to be miserably sick. My neck has been swollen for quite some time and has been getting stiffer and stiffer. When I mentioned it to my regular doctors they said it was normal and just to exercise it. We now know this infection has been there for quite some time and really believe the Lord led us to these doctors here to get the treatment I needed before it was too late. God is so Good. Why do I ever question? We will go for more treatments tomorrow before heading home and then Monday they have it set up for me to recieve home health to finish ten more days of treatments. The ENT here has also arranged for me to get a feeding tube placed Tuesday evening in Knoxville. He said he has never had anyone survive this head and neck cancer without one, I am unable to get enough nutrition to fight off infections. At this point I am resigned to do what ever is needed. Thanks for your faithful prayers for me and my family. Poor Wendell has stood beside me every step of this journey, never leaving my side. He takes care of everything I have needed. I am soooo blessed.

Thursday, October 15, 2009

NOT CANCER!!!

The surgery went as planned Tuesday evening, although at first it was a little hairy. My mouth will not open much at all, so they were debating on how to put me to sleep, finally they decided on local anesthesia. It worked and everything went fine. The doctor put in a draining tube and the infection is draining good. The swelling is going down and they are keeping the pain under control. At first they were treating me for a staff infection, but when the biopsy came back it showed a severe strep infection so they changed my antibiotics.
THERE WAS NO CANCER showing in the biopsy!!!!
Thanks so much for your prayers!!! Although I don't know why this is all happening I still know God is in control and has a purpose in this. He has been merciful to me.
I have to have another surgery tomorrow to clean out the Partoid gland . I don't know how long I have to be in here. The infectious disease doctor said 7 to 10 days, which is highly discouraging!!! The ENT came in this morning and he said he will try and set it up for me to continue treatment in Knoxville. He says I really need to get a feeding tube. I am not getting enough nutrition. My mouth won't open much and my swallow mucsles don't work right so swallowing is very dificult. He said my body is unable to get the nutrition it needs to fight off the infections. He said he was going to send the nutritionist in to talk to me today.
Please pray for us to know God's will in what we need to do.
Thank you in advance for your prayers.

Tuesday, October 13, 2009

We're In The Hospital

We went back to the ENT here today. He told me he was so glad to see I had came back. He said he deals with head and neck cancers and has a lot of experience. He said I really didn't have 12 hours to wait, I need to get this took care of now because the swelling is spreading and he said it could have resulted in another trach if I waited too long!!! He said it is a bad infection and needs to be gotten out of my body. We still don't know for sure about the biopsy, we should find out later today. He has admitted me here into the hospital and has scheduled surgery to cut this open, clean it out, and drain it, for 5:00 this afternoon. He will leave in drainage tubes and start me on high doses of antibiotics. If all goes well he seems to think I can get out on Thursday. We are feeling very confident in this Doctors abilities. Please continue to pray for us and the results of the biopsy.

Our Delima

Well, with fall break here there were choices to be made....go on our annual fall break camping trip to Townsend with several other families, where the weather was forecast to be rainy and cool.... or head to Destin with some other friends, where sunshine and warm sand was in the forecast. We thought about it a lot and weighed the pros and cons and finally decided Sunshine and Warm Sand might just lift our spirits!!!! We normally make the trip to Destin every May but this year because of all that was going on we just couldn't do it. We have made the trip with our friends for the last eight or ten years, and it is one of my favorite vacations ever!!! We left home on Friday afternoon. It seemed to take us forever just to get out of Roane County because of all the last minute errands we had to make. We had only traveled for about an hour when hunger pangs took over and Wendell found a little "Mom & Pop" restaurant to get something for me to eat that I could swallow. Open faced roast beef sandwich at a little restaurant in Spring City (I think) called Bimbos. It was great. That was the first bread I have ate in months, covered in gravy I was able to swallow it. Then we were off again. We had a good time just being together with the girls, talking and laughing. We drove to Louverne Alabama, to a little Hotel we usually stay at if we break the drive down, which we new we would need to do this time because of me. This ended up being my weekly "insomnia" night, I did not sleep at all that night!!! Saturday morning about five o'clock I could stand it no longer and had to turn on the light to look at the phone book. This action just happened to wake the rest of the family up one by one. They all woke up in great spirits but refused to go in search of an IHOP at that hour!!! We laughed a lot and had a great time. They all finally went back to sleep and I went in search of the hotel's continental breakfast.
We got back on the road about eleven that Saturday morning. I complained to Wendell that my neck was really hurting, even after several pain pills. He informed me it was really swollen and started calling my Radiation Oncologist to see what to do. When we got to Destin he called us in a prescription for antibiotics that he said should work within twelve hours. Well they didn't. The pain and swelling only got worse. So yesterday after a sleepless night we went to the emergency room here in Destin. They did blood work and a CT scan. My blood count is fine but the CT scan showed a mass. They don't know for sure if it is infection or something more. They sent me to an ENT who did a needle biopsy and drew some of it out to be tested. We should find out this afternoon what it is. The ENT said I either need to come back to him today or head for home to be admitted into the hospital for IV antibiotics. It will not be a quick fix. He said I would have to be there for several days. Please pray for us. This is a pretty stressful time right now, waiting. I know God is in control and can and will supply the grace we need to deal with this. I haven't gave in to start home or go to the hospital here yet. I am really anxious to know the outcome of the biopsy, and would like to have that information before making the decision to stay here or come home to be admitted. I guess it goes without saying the feeling in the pit of my stomache when I here the word mass. Please help us to pray and I will update as soon as I can. Thank You!!!

Thursday, October 8, 2009

Kiah's Party Pics.

I have been forgetting to upload these pictures of Kiah's "Sweet Sixteen" party. I was not a very good photographer that day and only took a few pictures.























Sunday, October 4, 2009

Another Night Of Insomnia

Another night of insomnia, it happens often, at least two or three times a week!!! I am able to get some things acomplished during these overnight hours, but I find my self wore out and sleeping all the next day. Oh well, I guess as long as things are getting done....
This week started out a little rough. I wasn't feeling well physically or mentaly. I still have no taste buds and can only swallow liquids or "runny" foods. I am practically deaf in my left ear again, which rings constantly. My neck becomes so stiff overnight that I wake crying untill I can get some meds in and they take effect. My neck, jaw and cheeck hurt constantly. My mouth is very dry but it could be and has been worse in the past, I still have some of my saliva glands, which is a real blessing. My energy level is at a lifetime low!!! I got very discouraged the first of the week over not having any energy, sleeping all day. But as the week went on it did get better!!! I know now that the treatments are over I want to be "well" and back to normal imediately and it just is not going to be that way, probably not for a long, long time. I also find myself morning the loss of my Mother more now that I am not so druged up. I don't think I have ever really started the morning process.
The Chemo doctor's office called and changed my appointment this week, I don't go until week after next. The Doctor was going to be out. I really didn't care though, because I believe this will be just a routine appointment. The radiation Doctor said I would not be needing any more chemo!!!!YEAH!!!! I don't go back to the radiation doctor for a month, for a check up. Then he will schedule a PET scan to take place two months from now. They have to wait for all the inflamation caused by the radiation to heal before doing the PET scan otherwise they could get false results. The PET scan will be done to see if I am cancer free.
I am going to try to sleep now, I hope to be well enough to attend Church today!!! I was able to go to two nights of our revival this past week. It was so good to be able to go and see my church family that I haven't been able to see for a couple of months. Dr. Gibbs from the Christian Law Association will be there today. He is always such a blessing to hear.
Well, nighty night for now!!!!