Tuesday, October 27, 2009

Cheeseburgers, Pizza & Pot Pie... Oh My!

Danny is continuing to improve every day! This past weekend we felt more like a family than we have in months. We traveled to out of town together - YES all of us. Summer had a softball tournament in Kinston and Danny was able to join us. This was a fun time for all of us. Summer's ball team played very well and they had a great time with a HUGE trunk or treat event.

We packed Danny's medicine in a cooler but left the TPN behind. We decided that we would skip the feeding just for one night. This weekend he was able to eat some real food... he started out with a baked potato and all went well so Danny decided he would try to eat more of a variety of food. He was able to eat a Subway sandwich, a waffle, a portion of a personal pizza and a chicken pot pie. He is so excited!

He is still taking the medicine on the same schedule as when we left the hospital. A couple of times he has tried to stretch out the time in between or just do without a medicine completely only to realize how much each of them are helping him. We have only had to use the Phenergan about 5 times so that is pretty good. He has reached a milestone... no more "do rag" or "pinky". He has been able to give up the wet cloth on his head and the pink puke basin that was a form of security.

Yesterday Danny was not feeling great so he did take the Phenergan and slept most of the day away. But today was a good day. Danny had his follow up appointment with Dr. Anagnost today. Because Danny is doing so good the PA asked him to cut back on the Marinol dosage and spread out the dosage on the Reglan to take it only 3 times a day instead of the 4. Otherwise, all other meds will remain the same including the IV Zophran. The greatest news today... no more TPN!!!! Hallelujah!!! Because Danny is eating so well the PA felt it was a good idea to stop the TPN feeding. Wow, what an improvement.

Danny was supposed to have his first scan the first part of December but they decided to move it up. He will have his first scan sometime within the next two weeks because he has started having chest pain again. Unfortunately, it is the same kind of pain that started this whole journey. It is not severe but it does hurt to breathe in, cough, sneeze and sometimes when he is laying down. Naturally we are concerned. The PA was pretty concerned too so she and Dr. A made the decision not to wait for the test. Of course, we started thinking maybe we shouldn't have dropped the last treatment. Hopefully, the results of the tests will be good. We ask that you continue to pray for Danny for complete healing. The thought of possibly having to go through more treatment is very daunting. However, we are going to keep a positive mindset until we know what to expect.

When we left the doctors office today we stopped at Merritts Burger house for lunch. I love their cheeseburgers and crinkle fries... throw in a cold Sun-drop and you have the perfect meal! Danny was able to eat a cheeseburger with chili and some fries, what a milestone. We are enjoying these wonderful days... and are looking forward to many more to come.

Thanks to everyone for taking the time to pray, for sending your notes of encouragement, your phone calls, emails, & visits. Many of you have sacrificed so much on behalf of our family - we are so very grateful for each of you! Thank you for loving our family during this tough time.

Thursday, October 22, 2009

Time Flies When You're Having Fun

The past couple of days have been the best I have had in a while! I have added mac & cheese to my diet. If you are not crazy about mac and cheese you should go without food for a couple of months. Man it was good. I seem to be getting better and better as time goes on. It is obviously going slower than I would like but it’s going.

It is amazing to me how quickly the last few months have gone. Sometimes when I was sick and in the hospital time would crawl. I would lose track of the days and even the month. The first week of October I was in the hospital and thought it was the first week of September. Anyway the time I was sick I was pretty miserable but God has been gracious and I came through it. I am not completely without issue now but I am so much better than I was. The nausea that I am dealing with now is bearable and I thank God for bringing me through the worst of it. In hind sight it doesn’t seem like I was sick that long.

Regina has done a fantastic job keeping up the blog. When I was sick I just couldn’t do it. I am a little intimidated now trying to follow her. I am not as gifted writing as she is and I am not so much a detail person like her but I will do my best. Speaking of Regina I don’t know how many of you have noticed but she is pretty awesome. I spent a total of 5 weeks in the hospital and the only time she was not right there with me my mother was. I am pretty sure that being mothered by such a wonderful woman growing up had a lot to do with me setting the bar so high for a wife. Anyway I am proud to have them both in my life!

I go back to the doctor next Tuesday. My hope is that I will be well enough to lobby for ending the TPN. I cannot get rid of the PIC line they have in me until I quit the TPN and I cannot go back to work with the PIC line. Hopefully after next Tuesday I will have a better idea of the future. I know I have to have some scans and they may want them before they remove the PIC line just in case they need to do something else. My hope is that I am near getting back to normal. I am eager to get back to work and choir and the ball park and all the other things I love about my life.

The encouragement I have received since this all began has been phenomenal! You all know who you are but I have continually gotten cards, donations, phone calls and have had hundreds of people praying. I feel as though I am indebted to everyone I know. I am not sure why so many people have been so kind but I do recognize how fortunate I am. It has really changed my outlook on life and people in general. People in some cases that I barely know have sent money and cards. It is extremely humbling that so many have done so much.

Well I just reviewed my post and I was right. I didn’t do as well as Regina! Maybe it at least gives you an idea of where we are.

Thursday, October 15, 2009

Missing Hairs Are Numbered

Yesterday was a pretty good day for Danny. He was not feeling great in the morning but after a small dose of Phenergan his stomach settled and he fell asleep. He actually slept most of the day. Unfortunately, that is one of the side effects of this medicine. He was pretty disappointed when he realized most of the day was gone but I was quick to remind him "it is better than vomiting". Of course, he agreed and dozed off again.

We have been able to drop a couple of medications. For the past few months Danny has been taking Ativan, Phenergan, Reglan, Marinol, Protonix, Zofran and using a Scopolamine patch to keep his nausea & vomiting under control. We have been able to drop the Ativan completely and only use the Phenergan as needed (which has only been once in the last 4 or 5 days). Baby steps for sure but we are making progress!

Danny was able to eat a small amount of soup... YES, he was able to keep it on his stomach!! Yeah! Everyday he can eat is another day closer to being able to drop the TPN feeding. It really isn't that bad, it is just inconvenient. He is hooked up for 12 hours so he has to carry a back pack style bag around with him. Which really is okay because we are at home but he is a little pitiful when he has to go to the bathroom in a hurry and drag his bag with him. Just a small price to pay for a short time in exchange for the blessing of life!

His spirits seem to be getting better too. Sometimes it is hard to tell because the medicines cause him to be in a daze so he doesn't talk much or get engaged in what is going on very often. But I know he is happy to be home.

I think his hair is starting to grow just a little. We are curious what it will look like when it comes back in. Many people have told us it usually comes back in a different color and texture so they jokingly tell him it might be gray and curly. I don't see the gray in the small amount of growth but it is too early to tell. It would be funny if he had to deal with curly hair for once... then he might have a slight idea of what I deal with trying to tame my mane everyday. That could be fun!

He has been able to maintain his weight with the TPN feeding. He has only lost 35 pounds total. He lost that early when he first started getting sick so the fact he has not lost any more weight is wonderful and thanks to the TPN.

I am amazed me with the medical miracles we have today. I often think about the people who actually have the ideas & intelligence to study, invent and create the medical wonders we have available to keep our loved ones alive. Who would have ever thought of pouring poison in your body to kill cells, knowing all along you were walking a fine line between killing the person and saving their life... chemotherapy is pretty amazing!

Our bodies are such a complex work of our Creator... to think about all the intricate workings is mind blowing! 'Indeed, the very hairs of your head are all numbered. Don't be afraid; your are worth more than many sparrows' Luke 12:6-7 To think that the Lord knows the number of hairs (that are missing) on Danny's head brings peace in knowing He loves Danny and knows his body so much greater than do the doctors. He is the great Healer in whom we put our trust!

Wednesday, October 14, 2009

Kicked Out... with options :)

Danny is doing much better. He has been able to eat small amounts of bland food and keep it on his stomach. Grits, chicken broth, & chicken soup have been the foods of choice so far this week at the hospital. He has been getting up and walking the hall a couple of times each day. So we are making progress.

Monday morning the doctor began weaning Danny off of one of his IV meds and changed it so he will be taking it by mouth. I think they wanted to be able to slowly wean him off of the IV meds and make the change a little at a time so that we would not be sure he is going to do well at home BUT we have friends in Alabama that had different plans.

We came home yesterday! Of course, we are excited to be home for obvious reasons. We really had no choice. The insurance company gave us a couple of options. Since he was still in need of nursing care & IV medications we could go home and I could continue to give Danny his meds through his IV along with the TPN or he could go to a skilled facility. Well, as you can imagine a nursing home was out of the question. Not only for personal reasons but also we didn’t feel the environment would be very conducive for a healthy recovery. We naturally took the option of coming home. I have to admit I have mixed feelings. Even though I am thankful to be home with the children and in the comfort of our own home, I am a little nervous about all of my nursing responsibilities. Let us not forget I am an accountant turned real estate agent…. Yeah that is pretty far from nursing so I am a very unskilled, quickly trained, stand in nurse.

My sister made me laugh yesterday. She reminded me of the statistics they share about women and all the roles they manage at home. You know the reports that show the monetary value of each role as if they were paid on a professional level. She said “Wow your portfolio just fattened… with the jobs you already have of accountant, social planner, domestic engineer, counselor, fashion consultant, transportation, lawn maintenance, chef, not to mention mother & wife and now nurse… too bad you can’t collect the pay!”. I think the fact the insurance company was “OK” with me handling this responsibility was a shock. They even offered to teach my 15 year old if I thought I would be overwhelmed. Pretty soon we will be performing surgery at home with training manuals printed from the internet! Hey, you never know!

So far I have done okay in administering the medications and the TPN was already familiar territory from before. It has not been too bad… maybe I missed my calling…. I could still go back to school. Funny huh, 38 years old and I am still considering what I want to be when I grow up. Just kidding! I am trusting the Lord… I know He has given me peace & equipped me to handle this situation. Danny is handling it pretty good too… he only asks me “what is that you are giving me?” and “what is that, is it time, are you sure?” every single time I have to do something. But in fairness to him, he did that to the hospital nurses too. I am sure we will have some fun stories to share when this is all over.

Danny has done really well since we come home. He has not vomited… YEAH! He has only eaten some potato soup but that is a great start. He was outside a lot yesterday once we came home. He sat on the back porch and slept a while in the warm sunshine. Later in the evening, he took a walk across the street to the lake (I guess he was hoping he would “see” some fish) and sat for a while on the front porch and watched Summer play with my nieces. He is definitely getting better & we are so thankful. The Lord has been so merciful & gracious to us during this time.

Danny did have a good night. He slept well after we were hooked up to the TPN and finished his last meds for the day. However, He was feeling pretty bad this morning but we have IV Phenergan we can use for times when the nausea is really strong or he vomits. Fortunately, we were able to get everything under control & he didn’t get sick. Maybe everything will all work out and the timing of our hospital eviction will be perfect so we can stay home permanently. I think we will be okay even if he gets sick. Last time at home we didn’t have a medication strong enough or that worked fast enough to get everything under control and it didn’t take long for Danny to get dehydrated. Hopefully, we are well equipped to stay ahead of the sickness so it no longer gets away from us.

We are very thankful the light at the end of the tunnel is getting brighter and brighter. We are on the home stretch of the race and the excitement continues to build. I am so looking forward to Danny feeling much better and being able to enjoy each & every day.

Thank you everyone for your continued prayers & encouragement!

Saturday, October 10, 2009

Still Dancing....

Well…. We are still dancing… two steps forward, one step back… turn around, 3 steps forward, 2 steps back. It seems that we have taken a few steps in the wrong direction.

Yesterday, they began giving Danny most of his meds by mouth with the exception of Phenergan. It is on standby as needed to help calm down the vomiting or nausea. This is a huge step towards home. We must be okay with taking meds by mouth before they will feel comfortable sending us home.

Danny wants to eat! He had a small amount of grits yesterday morning and did so well when it came time for lunch he was looking forward to eating something really good. Well… really good from the hospital menu is a stretch… he was actually looking forward to beef broth. They delivered cream of mushroom soup. He was so disgusted he didn’t even try it. Fortunately, his mother brought some good old faithful Campbells. He was able to eat a small amount of potato soup. Then he had a few bites of some chocolate pudding for dinner. The fact he is eating is great news!

All was going well until about 1:00 am when he was scheduled for some medicine. Shortly after swallowing the pills we started to dance, we took a few steps back… he became very sick & began vomiting. We were able to get it under control fairly shortly because of the IV Phenergan. This medicine makes him sleep so he was out of it for a while. I finally got back to sleep around 4:30 this morning only to wake at 7:30 with him vomiting again because he had just taken some medicine. This is the same song we danced to at home when he began going backwards to the point we needed to come to the ER. This morning we had to wait about an hour before they could give the IV magic this time. But fortunately, they finally gave it to him a little early… he is still resting.

The doctor decided they would go back to making most of his meds IV today and see if he gains his footing again. Yes, we are finished with the chemo this is a direct result of the chemo treatment he had 3 weeks ago. We are so hopeful this will begin to subside soon. We know that he needs to at least be able to take his medicines by mouth consistently for us to go home. Everyone is still trying to figure out why Danny is having such a hard time with the chemo meds. We knew it would be bad but had no idea it would be this tough for this long. This has totally taken the doctors by surprise too.

Danny’s mom asked the doctor could his age have something to do with how poorly he is handling the chemo. Remember this is a young man’s cancer. Usually this cancer is found in men 15 – 25 or 30. Even though the treatment is the same a body of a 41 year old is going to take it harder than a younger man. So Dr. A thought that she was right and agreed that his age did have a lot to do with it, but he is still perplexed with how tough it has been regardless of his age.

Our prayer is that the Lord will see fit to lift some of the sickness and allow Danny to begin to recover soon. I can tell it is really starting to take a toll on him emotionally as well. This is a hard place to be when you are receiving treatment but I think it is harder for him since he is over the treatments and he (and everyone else) thought he should start to feel so much better since the blood transfusion and the fact that time is passing since the last of the drugs. I think it is harder to deal with the steps backwards since the expectations are we should be moving forward. He is so ready to go home and be with the Daniel & Summer. He just wants to feel better. We know he will begin to feel better but it is getting harder waiting for that day. It is very hard to watch him be this sick for so long.

However, all I have to do is walk the halls of this hospital and then my heart begins to change… I am so thankful for our situation because it could be so much worse! We CAN & DO look forward to happier, healither days!

Thank you for all of the encouragement we have been receiving from everyone. It is very uplifting. Being here isolated from life as we normally know it makes it hard to keep your spirits up so each one of you play a vitally important role in supporting Danny and helping to keep him keep his head up and ready to face the next day. THANK YOU!!!! We are so blessed to have such a huge family of supporters!

Friday, October 9, 2009

Penthouse Suite

The Lord has been gracious… Danny has definitely improved over the past few days. The IV medications work so much better suppressing his nausea & vomiting. In the beginning of the week he did have a few rough vomiting episodes but the past couple of days he has only been fighting the severe nausea. Thankfully he has been able to call the nurse for a shot of Phenergan. This medication is not scheduled but can be administered as needed within reason. This extra medication seems to work well and get everything under control… At least for a while.

Danny’s white blood count is climbing back up to a more acceptable range. The last they checked it was back up to 2.4 and that is a wonderful answer to prayer. We need it to be in the range of 4-6 when we leave so that he is not susceptible to infections.

The doctors decided they needed to take another look at his stomach, esophagus, gall bladder, kidneys & liver just to be sure there wasn’t something else going on that was contributing to the nausea. They ran another EGD (I think) and also took a biopsy of the stomach & esophagus. They did not find anything new but found that both his stomach and esophagus were severely irritated. The test showed pretty bad lesions from the vomiting including an ulcer in his esophagus. The ultrasound showed all the organs are fine. This is good news in that we are still only dealing with the repercussions of the chemo drugs. However, it is proving to be a hurdle we must overcome in finding something he can eat. The GI doctors want him stay away from broths, fruits, basically anything acidic that will agitate the damaged areas. But he needs to start off with those types of food for his stomach and nausea.

Popsicles have been the food of choice the past couple of days. Danny has been able to eat about ½ of a popsicle and keep it on his stomach. Some of the thicker soups have been tough so he has taken only a few bites. I have to give him credit though, he is trying to eat. I look forward to the day when he can actually sit down to enjoy a meal… I know he does.

Friends have made comments like “I know you are disappointed you are back in the hospital” or “I hate you are back in the hospital, I know you would much rather be at home”. Yes, I am disappointed because I was hoping Danny would be doing better and not feel so bad. Yes, I would rather be at home BUT it is so much easier for me with him being here. I do not have to stress about keeping his meds on schedule, about whether or not he is dehydrating, about preparing his TPN feedings and most of all I don’t have to stress about his well being. The nurses take care of all that, thank the Lord. We do miss our children, especially now since they are not allowed in the hospital with the H1N1 restrictions. We would rather be in the comfort of our own home but his being here is for the best.

The accommodations are not too bad either… we have moved to the penthouse suite! We have a large room with 2 windows, 2 TVs and lots of room. Our pastor asked “are you being rewarded for frequent flyer miles?” It is funny that we were here for a month in the smallest room on the floor and this trip we are blessed with a large room. We might get to go home over the weekend or the first of the week if he continues to improve.

We are so thankful for the many blessings we have experienced through this tough time. So many friends & family members have come along side us to help in so many ways. You have met our needs in so many areas of our lives. We know there is no way we can repay you but please know that we are so grateful. To Danny’s friends & co-workers at GE… thank you so much for your compassionate generosity! Your thinking of our family touched our hearts and means so much. Danny misses seeing everyone… I know that he is looking forward to the day when he can return to work.

It is amazing how small things that you take for granted everyday can turn out to be great blessings that you are thankful for when you go through something that allows your perspective to change.

Monday, October 5, 2009

A few steps backward....

Wow! This week has really gone by very fast. It has been pretty eventful for us. Tuesday Danny has his last chemo treatment. During that visit his lab work indicated his red blood cell count was very low so they wanted him to have a blood transfusion on Wednesday.

Our appointment was scheduled for 2:00 on Wednesday. We finally made it to a “cube room” in the Chest Pain Center by about 5:00. You know the hospital is always on time and totally concerned about operating efficiently… yeah right. And NO, he did not have chest pain, they help out when the other units are full or too busy. They were super nice and very attentive. They began the transfusion around 5:30 and finished up the 2nd bag or unit of blood around 11:30 pm. Everything went very well. When we got home we started the TPN feeding and finished it up around lunch time on Thursday. However, Danny started feeling worse through the night and on into Thursday. He began getting sick more often and had some difficulty taking his meds by mouth. This continued on into the night Thursday & Friday.

Saturday morning Summer had a scrimmage tournament in Shallotte. Since I was going to be with her Danny went to his mothers for the day. It was necessary he not be alone because he was continually getting worse. He was so sick we called the doctor on call. Dr. Testori ordered the Home Health Nurse to come and give an IV cocktail in hopes this would get his stomach to settle and allow him to take his meds by mouth. Unfortunately, it took about 4 hours before he actually received the shot from the time the order was placed. By this time he was going backwards pretty badly. The nurse left the same series of shots for me to give Danny in 24 hours if necessary. Well, we didn’t make it that long. We knew he was getting worse and so our only option was the emergency room again.

It is amazing how the Lord makes provisions for us even when we don’t expect it or ask. He totally worked out everything in the ER. We drove up the front desk lady came out with a wheel chair to help him Danny into the building. He then got registered, his temperature taken & a mask on by the time I was able to park and catch up with him. They then took us to a private waiting room where we stayed about 5 minutes before they called him to Triage where they collected our long history and moved us immediately to a room. Wow… we were shocked! We waited about an hour to see the doctor but at least he was able to lay down. The test results showed his white blood count is very low. It is .09 and normal should be around 4-6. The ER nurse freaked out and put masks on both of us and wouldn’t let us leave the room.

The Lord once again worked everything in our favor…... when the ER nurse called to give report to our new nurse on the 10th floor she recognized our name and immediately knew that the room they had assigned to us didn’t have accommodations for me to stay with him. She said she had a room she would have cleaned STAT and then they would be able to move us up to that room. The ER nurse was quite shocked when she didn’t have to give report to the nurse. She was completely aware of our case and didn’t need any new info. That was so nice because after a long night in the ER it was nice to know that everything was going to work out fine. We made it to our room about 12:30 and just as we were settling in Danny got sick again. This time it was as bad as it has ever been. He was sick pretty much all night. He did rest from about 4:45 – 8:00. Of course the vomiting started again. They are doing everything they can to get his stomach under control.

Danny is really doing very well considering. He is such a good patient. I know that if I had been through a fraction of what he has I would be in a very bad state… crying, whining, & creating difficulty for those caring for me. He is so humble and considerate even in the midst of being so sick.

I have to be honest… I am pretty disappointed. I was hoping and honestly, expecting him to be getting better not worse. We know that the chemo stays and works in his body for 30 – 45 days but it has been 14 days since he received the cisplatin which is what is making him so sick. Naturally, we thought with each day he would be feeling better… especially since they told us he would be a new person after the blood transfusion. We didn’t know it would be the turning point for the worse.

Even though we are discouraged now we know that everything is going to be fine… we just have to get through this time… and WE WILL!!!