Update--Coming Home

I am sorry for the delay but Julia asked me to wait. She decided Wednesday night to come home. She should be on a flight en route to Knoxville as I blog. Jan is supposed to pick them up and bring them home. Linda is coming home with her and her dr here is trying to set up an appt with a oncologist and radiologist. There is a lot involved but basically Julie felt like she was not being treated effectively at CTCA. Hopefully this will not be another set back but as we all know time is ticking. She has asked that she have a few days at home to get aclamated before she has calls or visits. I promise to post daily to let you know what is going on. Again, I apologize but I had to do as she asked me.

Please everyone continue to pray, Julie's lack of nutrition has caused her to really go down. She is having to use a wheel chair when she goes any distance at all. I had a wheel chair that I took over this morning when I went to feed the cats. Donna had been feeding them but she is on vacation so I took back over when I arrived home yesterday. She needs prayers for strenghth, wise decisions and healing.

Still no treatment

Julia canceled her therapy this morning. She said she had a rough night and her back was hurting when she got up. She made an appt with the radiologist for tomorrow @ 10:30 to discuss what options she has. At one point it was mentioned that they could put her to sleep but that has not been mentioned since her block was done. She has a list of questions for Dr Patel including why can't she go on and start chemo etc. Beth left this morning and Linda arrived this afternoon. Please pray for Julia's strength to do this. She assures me she wants the treatment and I'm just optimistic enough that I have to believe her. I love her very much and I pray that whatever she decides to do she will be committed to.

Didn't make the treatment but is closer!

Just talked to Julie for about 45 mins. She didn't take treatment today due to recurring pain in her back however every day the pain gets less and less and she said the technician thought she would be able to do it tomorrow. Additionally she is having the treatment at 8:00 A.M. which I think might be a better time for her. We talked about a lot today including some business issues (I'm helping with paying bills etc) and she was more talkative and involved than she has been in weeks. Also, she is eating more...she doesn't eat alot but yesterday they had barbecue at the Guest Quarters and she ate some potato salad, baked beans and pasta salad. Not a tremendous amount but some. She would not have even touched any of that when I was there. Keep up the prayers and hopefully tomorrow is the big day!

Melanie

I don't know what it's like up there, but here in ET on Memorial Day it is GORGEOUS and I hope my most gorgeous Cuz is feeling ok, if not well.

I've got a chickadee nesting in a little birdhouse on my porch , as well as plenty of hummingbirds (your totem) and I think of you at least each morning and evening when they are the most active. I wish you were here with me. That's what I'm going to do. Let's pretend each day that you are sitting with me watching hummingbirds.

Hang in there Blackie, we love you a whole lot.

A Call from Julia

Julia called me yesterday and we talked for 30 mins....that's a record these days. She sounded great and says she continues to feel better every day - even the pain in her side is getting better. She said that she feels like eating etc more now. I told her the appetite enhancer is made from marijuana and that why she's feeling so good...Ha Ha. I asked her what she thought about Tuesday and she said she thought she could do it. So here's to Tuesday. Everyone pray for her safe trip from Oconomoc to Zion and her strength for Tuesday.

We are on our way to St. Petersburg but I will continue to talk and blog.

Another Weekend In Oconomowoc

First, thanks for the comments....it helps to write when you know that people are reading.

I'm thankful to say that I talked with Julia this morning and she said the pain is getting better each day. I talked to my son last night and I had not put it together but Chadley had a similar block when he had his accident. His was a different nerve and for a different reason but it took about a week for us to see results. Chadley was in a coma so he could not tell us anything be we could see results in his hand that had been drawn in a fist. It made me feel so good when she said the pain was easing up a little more each day. Maybe we will see some changes next week.
When I talked with Sandra yesterday she had been eating and drinking like she should. They have given her an appetite enhancer so hopefully that will making eating a little easier.

Her nephew came and picked her up today to go to Oconomowoc for the weekend. I think it always does her good to get away and have a different environment. Her niece, Beth is flying in to Wisconsin tomorrow and is staying til Wednesday when her sister, Linda will be back for a couple of weeks.

Please continue your prayers because I do think we are at least seeing some improvement in the pain. Hopefully, she will regain her strength and can make a commitment to whatever path she chooses to follow. I love Julia like the sister I never had and I truly appreciate every one's continued prayers.

Second Night in Hospital

This is the most difficult blog I have done. The pain is gone in Julia's back but she now has a new pain in her side. Dr. Lindsey (the hospitalist) came in to talk to her today. First of all she was very dehydrated and he also told her the tumor had grown from 3 centimeters to 5.5 centimeters during the time she has been there. The cancer has not invaded other organs BUT it is invading the portal vein which is near the liver and one of the mesenteric vessels is encased with the cancer. The Mesenteric vessels are the arteries and veins that supply the small and large intestines. Also, there are now 4 lymph nodes that have tested positive. He suggested that chemo and radiation begin immediately. Julia said that she was in too much pain. He told her that he would give her a shot of dilaudid to take care of that...which he did. She still refused to begin therapy today or tomorrow. She says that she will start next Tuesday. Julia told me today that she wanted to feel good this weekend and not be sick. I asked her to promise to try to eat and drink so that she could at least get her body in better shape. She said she would and Sandra did say she ate some and drank fluids today. Julia was released from the hospital but while Sandra went to get the car she became too weak and they decided to keep her overnight again. Sandra said that when she stands up her blood pressure is dropping so much that she almost passes out.

Those of us that know Julie well, know that she can be very stubborn and does her own dance. I'm concerned about her willingness to truly fight. I don't know how everyone else feels but I have told her all along that it is her life and I will respect her decisions. Unfortunately I'm not sure of what she has decided to do nor am I convinced that she knows exactly what she wants to do. Please pray that she has the strength to make wise decisions for her well being and that we all have the strength to accept her decisions and support her to the best of our ability.

Home Alone 2

Julia spent the night in the hospital last night which is normal after that procedure. Sandra was home alone suffering in 80+ temperatures since their air conditioner was torn up (it was a blessing that Julia got to stay). She said Julia was doing well and resting. Sandra is pushing to get Julia's treatment started tomorrow. We thought it would be good if Sandra could be with her since she has had radiation. Sandra also said that she got a copy of a scan that was done last week and even though the tumor had increased significantly that there were no signs that it had spread to other organs...thank you God!

Good Night After All

Talked with Sandra a few minutes ago and Julia basically had a good night. At least Sandra was rewarded with getting to see the Julie we know and love for a while. She woke up a little after I talked with Sandra last night, was working puzzles, ate a little, and Sandra said she seemed to feel good enough to walk to the hospital which is about 5 blocks away (that is probably an exaggeration but still sounds good). The pain returned around 4:00 a.m. which is what they expected. From what Sandra is saying they wanted to do the epidural to determine if she could get relief from pain at the site they had determined for the block. Sandra says they are using the terminology of killing the nerve with the alcohol. That doesn't exactly go along with what the John Hopkins website said but they did also say that it should last 3 to 4 mos. So regardless of the technical terms sounds like they have a good plan and Sandra, Beth & Rich may get to see Julia pain free which would make everyone feel really good. I will blog again tonight after the block and we know more but since she seemed so much better later last night...I thought I should share the news.

Hopefully pain free

Julia's procedure went well but the radiologist told Sandra that the tumor had grown significantly. They have decided to go a step futher on the pain management and are doing another procedure Celiac Plexus Block tomorrow at 12:00. You can read about this procedure at http://pathology.jhu.edu/pancreas/TreatmentPain.php. I talked with Julia this afternoon and was so excited, she had no pain and was eating a grilled cheese sandwich. Well...the eating lasted for about 2 bites and a bite or so of a pickle. So as of 9:00 that is all she had eaten all day today. Sandra is going to talk to her care manager tomorrow about the lack of appetite etc. I am even more concerned about the lack of fluids. But like I told Sandra, this is normal and the best thing to do is talk to the Care Manager and maybe the nutrionist for advise on what her role should be and what would be the best way to help. I know Julia and sometimes the more you say the worse it gets. Beth, I'm hoping she will want to impress you and at least try to eat. My candle was lit and a prayer went out for Julia and Sandra at 9:00. Sandra loves Julia and is feeling helpless but I know she is doing a good job. When I talked to Sandra about 9:10, Julia was sleeping and actually laying on her back (it's been a long time since she's done that) so at least it sounds like she is getting some relief from pain and that will probably help her appetite more than anything.

CTCA definitely knows who Sandra Wright is!

The day started with the same old, same old. Linda called, Sandra and I talked and she got her ammunition together and went to the hospital to get some action. After going to Care Management (trying to go thru the proper channels) she went to administration and told them she was tired of seeing her friend in pain and was tired of waiting for a phone call to get the show on the road. By 2:00 Julia was scheduled for an epidural tomorrow at 3:00. The epidural is a catheter into the spinal area that will allow continous delivery of pain medication around the spinal nerves. This mode of pain med admin requires special physician and nursing expertise and needs careful monitoring but hopefully will work. Once the pain is under control the radiation and chemo should start. Julia actually has the chemo pills but she not supposed to start taking them until her radiation is started. Prayer is needed tomorrow for her strength, she has a busy day starting at 9:30 with different appointments until the surgery at 3:00. I can't help but get my hopes up that she will have control of the pain by tomorrow evening.

Changing of the Guard

Linda went home yesterday and Sandra took over. Chadley and I went to the airport to see Sandra off and take some things up for Julie. I wanted to get Sandra's picture and she insisted on having it made with Chadley. She can't get over what a big teddy bear he is. For those of you who don't know, Chadley is my 28 yr old son who had a serious car accident in 2002 and has a traumatic brain injury. Mamaw Jan & Shirley sent Julie a couple of gifts and Jan also sent Sandra a gift. You know Mamaw has to be sure and take care of everyone. She paid for mine & Julia's luggage when we flew up and sent Sandra $'s to do the same for her. Sandra insisted on taking the money and getting Julie a couple of Tennessee Tshirts. She wanted to make sure Julia would let everyone know where home is. She said Julia loved them. We'll have to get photos of Julie modeling her latest wardrobe addition.

I called Julia a few minutes ago and she said she was in terrible pain. I talked to Sandra and we finally convinced her to let Sandra call Pain Mgmt. One of the benefits of being there is you have 24/7 on pain assistance. Julie has never taken advantage of it because she always felt she could bear it til the next day but we thought it was time to do something now. She should not have to suffer this way and I hate to have her drugged but I firmly believe that when someone is hurting this bad additional meds are a necessity. Sandra said she is not eating again which is what happens when she is in severe pain. I'm so glad someone is with her. Julie is a tuff cookie and doesn't always take the initiative to help herself. Keep up the prayers for pain relief...I know you will.

Again...no radiation

I couldn't bring myself to post on the blog last night...I'm really trying to be upbeat and positive. Julie did not have radiation again. The doctors need the input of the intervention radiologist who did her bag and he was in surgery all day yesterday. After reading up on the Internet (my son the MD keeps reminding me that I am not a doctor and not even close to it so I need to be careful with my interpretations) I think I understand the different possibilities. I am sending Julie some info with Sandra so that she will understand more and can ask questions. Of course, I think she is in so much pain that all she wants is relief. I'll post more as I know more. Hopefully, Sandra will be off to Chicago at 3:30 today and I'm planning to meet her at the airport so that she can take some things to Jules.

STILL NO RADIATION

I just talked with Julia and she didn't make it again. For some reason they tried a pill rather than the injection and were not successful. Pain Mgmt and the Radiation Team are getting with the doctors tomorrow to see what they can do. Sounds like twilight sleep is needed. She sounded good but was disappointed...she said the pill did not phase the pain.

The Latest News & An Address for all of you!

Julia had a rough day again today. She was not able to do the radiation due to the pain she has in her back. Tomorrow they are going to give her an injection for pain before the treatment and if that does not work they will put her to sleep to do the treatment. She really got sick today. She has to lay on a hard, flat table for the radiation and her back hurts her so bad it makes her get very sick. Please pray for her...she truly needs all the prayers she can get.

Linda moved her to the Guest Quarters and she has a recliner which I think will help her alot. She will be there for the rest of her time in Zion. Her address is:

Julia Zumstein
C/O Guest Quarters - Room 5
1911 27th St
Zion, IL 60099

The phone no. there is 847-872-3564.

Thanks for everyone's patience as I learn ways to improve the blogspot. I finally figured out how to post showing my name and if you've not noticed please read the details in Change in Comments. Any suggestions are appreciated.

Change on Comment Section

Several people have commented that they tried to leave messages but could not accomplish the setup etc. I've changed the setting and hopefully this will help and not cause too much trouble. You can write your comment then be sure and put your name because your are commenting anonymously and she will not know who it is. After your comment come down to the comment as: and select anonymous and then post comment. I'll watch to see if this seems to work better for everyone.

Just wanted to share photos of some of the beautiful flowers in Julia's yard.

Lois @ Easter with Julie

Lois sent a gift for Julie yesterday along with three photos from Easter. I thought I would share the one with (from left) Linda, Lois, and her niece Carol. From what I understand they had a great time at Easter and looking forward to many more after Julia gives the monster the boot.

Mon.,May 11

Another week started after a quiet,relaxing weekend. It only rained a little Sat. night. The rest of the time was very nice. The flowers and trees are all in bloom. It's very pretty up here this time of year. We've had a full day today. Julie had an appointment at 9:30 to get her dressing changed. Next she had to get her blood drawn. We had a little lunch while waiting for her next appointment. At 12:30 she had to go for an exam and at 1:20 she was supposed to get her first radiation treatment but she forgot to bring her pain medicine with her and by that time she was hurting and couldn't lay down on the table so they rescheduled her for tomorrow at 2:50. We check out of here at 12:00 Wed. and move to the Guest House were Julie will stay the rest of the time she is here. It is only about 5 blocks from the hospital. Julie is taking a nap so I decided this would be a good time to write on the blog. Once she starts the radiation she will get it everyday from Mon.-Fri. She really enjoys reading your email on her blog so keep it up. I'll let everyone know how it goes tomorrow. The radiation treatment only lasts about 10 min.

Off to Oconomowoc


I talked with Julia a couple of times yesterday. Her nephew (Rich) took her and Linda to his home in Oconomowoc, WI for Mother's Day. I am sure Linda enjoyed being with her son...I'd say with him in Wisconsin and her in Mississippi that does not happen for Mother's Day too often. When I talked with Julie; Rich, Doug and Linda had went out shopping and doing the normal Saturday trips to the meat market etc. When I was there we went to the meat market and I had an awesome Brat that one of the Community Clubs was cooking right beside the market. Apparently in the spring and summer the clubs grill etc. to raise money. Well let me tell you, that was the best Brat I had ever had. My husband cooks a good brat but those fresh made ones there in Wisconsin can't be beat. Julia was enjoying relaxing at home with the girls (Shelby & Skyler...the Australian Shepherds)

She had visited the pain mgmt specialist on Friday and they had doubled her dose of the long acting pain medication and of course she has meds she can take every 2 hrs if needed. It sounds like the pain is getting worse but the change in meds seems to be helping....she did sound like she was in pretty good spirits. She also met with the Naturopath Dr on Friday and they have put her on nine supplements...she said most of them looked like horse pills and she would have to get up an hour earlier just to get all of her meds down. I hope the new meds do not have a negative impact on her appetite. She still eat very minimal amounts..the one thing she can almost always eat (but still not a lot at one sitting) is watermelon. She probably will eat about a fourth of what we would think of as a normal slice. She promises me that she is getting down a little bit of food every day.

Keep praying!
Love,
Peggy

I just wanted to share another photo and let everyone know I talked with Julia this morning and she thought she rested a little better last night. I was so glad to hear that since she had to cancel a couple of appointments yesterday because she was so tired.

Photos

I'm trying to add a few photos to the blog. The hospital and hotel's computers did not have the photo card slot. I;ve added some to old post and wanted to add a couple more. I don't think I mentioned in the beginning that Jan & Shirley took us to the airport so we would not have to leave our car for who knows how long (ended up being a very wise decision). I sure am thankful that Shirley went with Jan...I think she needed the moral support and Shirley is excellent with TLC.

When Julia and I were younger (probably pre teenage) we used to buy matching outfits. I'm not sure if we did it on purpose or if the choice in Rockwood was so slim (JCPenney & Bernard's) that we didn't have a choice. But I was shopping before we left and found a pair of pj's for Julia and decided I liked them so much that I wanted a pair also...guess what...JCPenney special. So Linda wanted to take our photo and I promised to put it on the blog. Julia cheated..she still had on makeup but since I liked to get mine off ASAP I was bare faced so sorry for the scare!

Getting Started

At least it's a start. Julie got marked today for radiation. It takes 5 days until they start the treatments s0 it will be next Tues. before she gets started. The treatments last from5-6 weeks. We will be moving to the Guest House the 13th. It is only about 4-5 blocks from the hospital. Julie was given new pain medication so maybe she will be able to rest better now. It has been a long day and she is taking a nap. I am taking this time to put this on the blog. I am not as good at this as Peggy was. Rich is coming down Fri. to get us and take us up for Mother's Day weekend.

Sunday 5-3-09

It is a gorgeous day! Peggy is getting ready to fly home. We miss her already but we know her family will be so glad to have her home. Julie may not be rich in money but she is rich in friends. Julie has had and OK day. She's eaten pretty good today. We have just laid around today. Julie has to be at the hospital tomorrow at 10 am.

Solo Flight

Well Julie didn't make it to Walmart, she sent her admin asst instead so that she could stay home and rest. She was very tired again yesterday. Linda arrived this morning via the stretch limo. It has been a much better day for Julie. She came down and read her comments on the blog (which she has not been able to do since last Sat) and has actually eaten more today than she has since we have been here. Most of the yellow has gone away since she got her bag so hopefully that will make her feel better and perhaps improve her diet. I'm leaving tomorrow and Linda will take over the blog. I will try to add photos either tomorrow or Monday. I took some of Julie Thursday night after she ate and this morning that are really good and I think will show you how much she is beginning to improve.

Oops! Fell off the wagon!

Sorry for not updating the blog yesterday...we had a free day and I got out of my routine. Good news...I actually had a dinner partner last night. Jules got dressed, came downstairs and ate a little salad, orange roughy, and rice....I told my husband that it was a little bit on my eating scale but a lot on Julie's. I was really proud of her. She looked so good yesterday evening, I took a couple of photos which I will try to share when I get home (the computers do not have a slot for the photo card). I even took one with her modeling her new bag! We were very fortunate, there was a cancellation at the resort so she can stay here til at least next Thursday. We went to the hospital this morning to take care of a few administrative issues and Julie got really tired after about 15 mins. Fatigue is a huge issue and seemed to be getting a little better. She has nothing scheduled today (we were back here by 9:00) so we are hoping she can get some rest and we can do a short trip to Walmart. We have a running list and she wants to go but if is not up to it, I will do it myself. The hospital provides a shuttle that runs to Walmart several times in the afternoon. I'll let you know later today how everything goes. Keep your fingers crossed.