Wednesday NOON

Dear Ones,
Things went well at the radiation treatment and x-ray appointment today. Dr. Hitchcock told Marty he is doing great. She noted outloud that he has ONLY lost 1/2 pound this week. Marty pointed out to her it was actually 4 1/2 since last Wednesday. There was no threat of a feeding tube. Her comment is that weight loss during radiation is very normal. He told her his throat is bleeding and he removed a clot from his tongue the size of the tip of his thumb this morning. Her comment after her painful exam of his mouth was that she sees no bleeding and the fungal infection is still there. Our trip to the pharmacy was a little more spendy today-----two new meds. I am hopeful that the Fentanyl transdermal patch will work some magic on him ....and he is to still take the pain meds 2 every four hours, if needed. So, at best, he will have no complaints and will get better rest OR ..........(oh, let's don't go there!----the possibilities are endless.)
He really tried both Monday and Tuesday to increase his intake and the total both days would just make you cry. He is so far off the mark on just the fluids he needs. I can only encourage and make it available , but I cannot MAKE him drink it or keep it down.
Well, on the bright side: only 12 treatments to go!!!!!!!! That is fun to think about.
Well, again, our email addresses are: glcb@dcdi.net and martybaker@dcdi.net and if you want to write directly to us instead of make a public comment, feel free to. Thanks for keeping us in your thoughts and prayers.
Love, Mom, Grandma Ree, Aunt LaRee, LaRee and of course, Marty

October 23, 2007 Tuesday morning
Dear Family & Friends,
Without going into GREAT detail of how frustrating Monday, yesterday was, I will just say that even though Marty said he needed the feeding tube, the only option they had for him was to have the nasal/throat type of feeding tube until the surgery could be scheduled for the stomach tube on Thursday! NO to that idea. His throat is so 10 PLUS PLUS on the 1.10 scale of pain that he did NOT see that as possibility and I fought FOR him on that decision. Then, the only option was to admit him as an inpatient and the surgery would possibly be done sooner with IVs on board until it was done. Jane, his nurse & Dr Hitchcock and her visiting colleage were called in to talk with him. I was so relieved he was going to get some much needed help. However, as Marty now puts it, he had a "panic attack" and refused that option.
So, we returned to the room and he tried to do the best he could---actually getting 3 cans of STUFF and one glass of water in ---for the whole day, but NOT having to be and inpatient patient. He only had one nurse and that was me and I was mad. Poor Marty!!
I was speechless (that is the only kind word I can say online, because there are many other adjectives that go in there). He has lost another 4 pounds so I do not even know what to guess will happen tomorrow----the day Dr. Hitchcock officially makes rounds on him. We know he needs more pain meds and numbing gargle, as he is being more generous with himself as suggested by Jane and Dr. Hitchcock.
Treatment went ok today and we will work on topping yesterday's intake and being grateful that we have each other and the nice accommadations and lots of family and friends rooting for him.
Love to all, LaRee, and of course, Marty

Dad is getting worse

I probably should not post this until I get word from mom on what the radiologist oncologist wants to do but as some of you already know each week dad has been getting worse as far as dry throat, mouth, bleeding in his throat and the fungal infection but this weekend when he came home he lost his voice. That is how dry his throat has gotten and he could not eat or drink. I think that he maybe drank 3 carnation instant breakfast which he threw some of that up. His appointment was supposed to be today at 4 and mom was going to work until noon and then they would head down but last night she thought that they ought to get him down to SLC so that this morning they could go ahead with putting a feeding tube in his stomach. I haven't heard from mom yet today and so I don't know what the plan is. I hope that if he does get the tube in that it will ease his hunger pains and I hope that he won't be throwing up. He is just so miserable and things are just going to continue to get worse until the treatments are done. Keep him in your prayers. He has 3 more weeks until the healing process can begin.
Thank you for all of your love and support.
Deidra

Tincture of Torture and Time

Dear Family and Friends,
Getting back to Salt Lake to be with Marty yesterday felt good. After attending the Sun Valley Convention and working just one day at Dialysis, I headed back. Though very glad to see him, I am so saddened to see how much more miserable he is. The bleeding after Tuesday's treatment was alarming to him and on Wednesday, he was informed that he is now dealing with a fungal infection throughout his mouth. It has bumped his mouth and throat pain and irritation up a notch and he is just in so much misery. He dumped another 6 pounds on the official weigh in for the week, so now the feeding tube issue is back on the table. ATTENSION: It is not up for discussion as far as our "strong" patient is concerned---not going to happen! I was prepared to find it would already have been placed by the time I got here, but it has not. He worked most of the night on getting fluids down and getting all his "new" meds for the infection and his other meds down. I wish I could take away some of this for him.
I want to go on record as saying that I WILL be on the doctor's side to get the tube back in, but IN THE STOMACH------not his nose. His throat cannot take anything else right now. And, by being on the doctor's side, I am being on Marty's side because I know that will be best FOR him. He could just drink to keep things most and not worry about the nutrition aspect at all. It will be interesting.
On a more positive note, I am thrilled with how the new sleeping med is working for him. With his long standing sleep difficulty and his extreme exhaustion and pain, he was still not getting any real rest. Last night was the best I have seen him sleep in ages. The only thing that woke him (several times) was the pain in his throat which got him right to the sink to use the special mouth preparation that has been ordered.
He was still sleeping and our appointment is not until 10:00, so I came to the lobby to eat and get on the blog. Love to all. Remember him in your prayers,
Love LaRee, and of course, Marty

Benefit For Dad

First of all let me say that dad is hanging in there. He came home this weekend and we all went to visit him. He was pretty tired and really sore. With the radiation going he is having trouble swallowing and is a great deal of pain again. His throat is swollen and it is hard to swallow and eat. Hang in there dad.......like you said 1 week down 5 to go. I know this is feeling like an eternity, our hearts ache for the pain that you are feeling...........but we are so glad that you are still with us. Love you!

On Saturday November 10th from 10am-5pm at Jolara Lanes Bowling Alley in Montpelier, Smokey Canyon Simplot Mine is hosting a benefit for dad to help raise money for medical expenses. There will be bowling through out the day, and a lunch at 1pm. I am not sure what the charge is going to be for bowling but I know that they are going to charge per plate for lunch. In addition I have asked the local businesses to participate in donating things to raffle off. Tickets will be $1.00 each and you will not have to be present at the benefit to win. I haven't got the tickets yet but as soon as I do they will be sold by me and at a few businesses in town, like the Hospital, Ireland Bank, and Thimble Wood so far. I will post another blog and let everyone know if there is anywhere else, and when the tickets are ready to sell. Our family thanks you for all of your love and support. If anyone has any questions on the benefit please don't hesitate to call me or send me an e-mail deidrajo@dcdi.net
With Love, Deidra

Saturday October 6th Update

Dear Family and Friends,

I wish you could have read the great blog I posted last night. I really did spend 45 minutes writing a fabulous, entertaining and informative note and then--- poof-----it disappeared and I did NOT know how to retrieve it. So, you just get this short, awful one. The meetings and accommadations here at the Sun Valley Inn are wonderful. No news from home bad or good. I hope all who can will call or visit Marty today or tomorrow before he heads back the SLC. I love you all, LaRee

The Trailing of the SHEEP

Dear Family and Friends,

Yes, it's true! I have arrived in SunValley, which , at this time of year, always involves passing under the big banner announcing that it is the annual Trailing of the Sheep. It is a very interesting story---someone else can tell you. ( You all know how I hate) to tell stories. No matter how many times I have the privilege of coming to SV, I never ceased to be amazed at the beauty, peacefulness and elegance of the Sun Valley Inn and Lodge. I did make a stop at the Flying J just off the freeway to walk and stretch a bit and get some fresh air. It was fresh, cold and snowy air. I also stopped at Kings in Hailey----I knew the few basics I was needing would be much more reasonable there and I was right. I love that the staff here are mostly young folks from foriegn countries. They all have darling accents and bend over backwards to be of service. I didn't really mean to, but ended up getting Valet parking as I checked in. I joked with my helper that he could tell I was planning to stay the remainder of the year at SV and he nodded in acknowledgement. He did NOT know I was joking. I know, I have GOT to get packing lessons from SunDee and Terri SOON. IN THIS LIFETIME, AS IT WILL BE UNNECCESARY IN THE NEXT !!! I am staying in Room 32 of the INN and I as very lucky as I am just doors from the heated pool. So.....of course that was the first event of the day. I have drank a quart of herbal tea (the calming, camomile type) that I love and I thought that was a great supper of me. I have unpacked and just had a nice relaxing night. I am so sorry to be missing some very important visitors in Bennington this weekend, but I cannot be everywhere. Marty made it home safely, as I knew he would, but he sounded very miserable when we talked tonight. He is tired and I pray he gets the night's sleep that he so needs. We are so grateful for the kind and thoughtful things people keep doing for us. I am making a list and it is getting longer and longer all the time. Keep Marty in your prayers and know we love you,

LaRee, and of course, Marty

The end of a very INTERESTING week!

Dear Family and Friends,

Marty and I part company this morning after treatment. He is coming home for the weekend and I am going to SunValley for IHC meetings. It was an honor to be asked to go, though I know I am only going by default-----my heart aches about the "why" I was asked to go. But, it may be a very big blessing for me to have a break from things and the kids and other family can be Marty's helpers for a few days. It may seem selfish of me to go, but I am really looking forward to it and the meetings and atmosphere are always wonderful there. It is one way I can help and I have not been very much help for work lately.

I hope the Baker clan down this way will touch bases with him at the first of next week when he will be on his own.

We both slept well, for us.....and woke up excited to get a break for RADIATION for the weekend. Marty is feeling pretty strong this morning.

Pray for Marty's safe arrival home and mine at Sun Valley. I am so sad to miss a visit with Aunt Nilace, Colleen, Nancy and Amy Kay, but hopefully they will be welcomed and have a wonderful time with the family there. I would very much love to see them all.

We have really love the University Guest house. I would highly recommend it to others who need treatment down here.

Love to all, LaRee, and of course, Marty

October 4th, Thursday

Dear Family and Friends,
Hello to all. Well, the pain meds have helped, but now I"M for sure the driver---which always seems strange for me. Sick or not, I am used to Marty wanting to drive. But since Wednesday morning, he has relinquished that to me.
Wednesday treatment and weekly visit with Dr. Hitchcock went well and then we went directly out to see Mom before Marty got too tired. I think we may have stayed too long because he was really miserable by the time we got back to our room. It was a nice visit and she was awfully glad to lay eyes on him. We learned a bit about the cruise and saw her pictures and heard how things went. Her apartment is very nice and in a very nice part of town.
Marty got about 5 hours of sleep last night which felt like heaven and we both slept until 8 am. We tried the shuttle today instead of driving, You know me, I like to know of and try out all the options! The trip up was a piece of cake and we were dropped off just feet from where he checks in. The trip back involved a bit of a wait which was aggitating to him, but I thought it was nice to just be passengers with no decisions to make. He has now had his applesauce and instant breakfast and is now napping. I'm really glad we came right back to the room today and did not go on any adventure. I came down to the lobby so I won't be noisy and can make some calls and mail some insurance forms out and perhaps get a little sun on the deck. It is a beautiful Indian Summer day here. Hope it is for all of you wherever you may be.
I see so many physical changes happening to Marty in just these 4 days. He has gone backwards in the healing process and it has become harder and harder for him to get the nutrition he needs and I am being a major nag because he does not even think about food. We brought a huge stash of foods that were working for him with us, so its just a matter of reminding him to eat and opening something up for him. I keep thinking of new things to try and it just makes him mad, so I will stop doing that. His mouth is so sore inside and his face and jaw hurt constantly. Dr. Hitchcock was pleased with everything at yesterday's weekly visit, but does want him to shave before treatments!!! Easier said than done! That was really bad news for him. He has only shaved once since the 2nd surgery and it was torture and pain. But, he minded her and though he did need a bit of help from me, mostly did it on his own. He kept taking breaks from it so the whole thing took about an hour. Who knew just a simple thing such as shaving could be such a PAIN. ???? I really hope the whole nerve thing that is going on there will be temporary and that this is not how his face is going to feel for the rest of his life. All I can say , for now is "Kiss him gently and be really careful where you touch him" -----the slightest tap on the shoulder or back even hurts. For someone who has always been so tough, it is hard for me to see. Pray for his comfort and his ability to sleep.
I am grateful for his strong nature and his need for independence. I feel most days I am here mostly for moral support and not so much to be his nurse, but I do know that he appreciates that I CAN be his nurse if he needs me to be and can just be his wife if he needs me to be. My biggest challenge right now is to BE QUIET. It hurts for him to talk and he has become so deaf that it's am effort just to listen. I know this will come as a HUGE shock to those who know him best. The TV stays off a lot of the day !!! No, I am not lying.
As always, I have my cell on me and will try to communicate as much as I can with email and with this BLOG. For those of you who do not know, my email is glcb@dcdi.net ---short and sweet and easy to remember.
Thanks to all who still have Marty in your thoughts and prayers. Thanks to all who are covering our "real life" at both our work and home. Love,
LaRee and , of course, Marty

Wednesday News from Salt Lake City

Dear Family & Friends,
Tuesday's treatment was difficult. There had been so much swelling in Marty's jaw and face from Monday to Tuesday that the mask did not fit right and a few minutes into the treatment, he could not breath. The treatment had to be stopped and they acutally cut off the lower part of the mask that had so carefully made to fit his face!!! It was quite traumatic for Marty and he looked a bit shaken when he came out into the waiting area to me. Who knew this could even happen. It was nothing he had been warned about or is common. Well, the good news is that fianlly, Marty got some much needed sleep last night so today is bound to go better. Jane, Dr. Hitchcock's nurse made sure that we left yesterday with prescriptions for pain & sleep meds, Marty mostly rested and worked on eating and drinking and I worked on medical bills and insurance issues and calls. The day flew by for me and seemed LONG for him. In the evening, Michelle and Gordon came for a visit which was nice. We are grateful to be this far down the road to recovery with much of the hard stuff behind him. We know there is still plenty ahead for him. We are hoping for treatment to go smoothly today and for our weekly visit with Dr. Ying Hitchcock to happen today. She told us that the technicians will be delivering the treatments each day and she will see and evaluate him only once per week and that will be on Wednesdays. Love to all, LaRee, and of course, Marty

Monday News from Salt Lake City

Dear Family and Friends,

Well, Marty was a trooper through his first radiation treatment. It took a long time (and we were planning on a short time) because they had to take a series of X-rays prior to starting -----just to make sure the mask and everything was lined up properly. We did a few errands and grabbed a few more items while we were out and about and had very little rest time for him before the appointment with Dr. Sharma in a different part of town. That appointment required quite a wait for a restless and hurting patient, but it was well worth it because when we finally got in, six of the sutures under this tongue, that were bugging him big time were removed. Dr. Sharma thinks the arm donor site looks good and cauterized it a bit with silver nitrate to dry things up a bit. Though Marty let the doctor know he is getting precious little sleep and is still hurting very much (6 to 8 on a 1-10 scale) most of the time, I guess he did not whine enough---- still no further pain or sleeping meds ordered. I'm sure he will bring it up tomorrow with Dr. Hitchcock or her nurse, Jane, to get some help. It may be another l o n g night. Yesterday, his main problem was a headache, but today it is just head pain. He said laying on the table with the mask on exaggerated the pain and it has been a problem most of the day. His hearing is very crazy because he is SO deaf in the left ear and yet is hypersensitive to some sounds. Weird. Well, happy FHE night to all of you and thank you for checking in on us. Love and goodnight, LaRee, and of course, Marty

PS Hope you enjoy the beautiful picture of home. It has been sort of windy and cloudy today. We have seen LIFE FLIGHT come in twice today.