Thanks to the transfusion, Christmas was great!
You may remember that Joyce and her nurse practitioner set up a blood transfusion for Dec 22, so she would be in better shape for Christmas, and it worked! We had a great time with family and friends during the holidays and Joyce’s body did well keeping up with what she wanted to do.
She is done with chemo, and next week she will have a C-T scan and another visit with the oncologist to determine what is next. Both of us will be starting PT in January. Both at Methodist Hospital, but in different programs, it will be very interesting to see if we can get them scheduled at the same time, so we can “ride together”.
We look forward to 2010, and many good things. We wish you a happy New Year and good health through the year.
We may see the New Year in on TV in England, but not the New York “ball!”
Doug and Joyce

The last scheduled chemo is coming tomorrow!

Yes, I am slow to get you updated again! Joyce's chemo was rescheduled again, but it is finally tomorrow. She really wanted it a week ago as you know, but her blood was not right. Her last test came out better now, and the Dr did not want to wait til after Christmas. We met with the Nurse Practitioner and we got a transfusion set for Dec 22, so we hope that will help her be OK at Christmas!
My back is much better, not so good in the morning, but much better as the day goes on and I walk more. I even have some "aha" times when I am totally pain free--It is coming!
Talk with you again soon.
Doug

Joyce said “Yahoo, I can walk!” “Praise the Lord for yesterday!”
Doug said “Amen!”
Yesterday morning Joyce was so weak she would get tired out just walking across the room. A couple of weeks ago, Joyce had asked to get a blood work-up. She was scheduled for that yesterday, but didn’t think she could make it. She called the Cancer Center and they said to come in for a saline IV, so we did. We went to the IV and transfusion center about 10:30. After the saline IV Joyce mentioned that we had canceled the blood work, and the nurse said “you should never cancel blood work, they should not have let you do that; let’s get some blood and get it done.”
We went home and just when we were done with lunch, the nurse called back and told us Joyce’s hemoglobin was 5.4 and to come in for a transfusion as soon as possible!
So about 11:45 Joyce was getting 3 units of blood and a unit of platelets! We left the hospital about 8:30 pm, the two nurses had stayed an extra hour for us!
What if Joyce had not scheduled a blood work-up?
What if she had not mentioned it to the Nurse?
What if the two Nurses were not Angels in disguise and had not responded like they did?
How many Angels were with us yesterday?
D and J

Baxter is back…… Thanksgiving……Giving Thanks
Joyce had not been able to keep any food down since Sunday, so yesterday we were at the Cancer Center for an IV for nausea and for dehydration. They really helped Joyce feel better immediately. Just as we were leaving the center, staff and friends were assembling for a Christmas service for the Frauenshuh Cancer Center. We kind of got caught in the flow of people going to the event, so we went also. It was actually the Christmas dedication of a special tree in the garden coupled with lighting of the Christmas Lights. We have often wondered if the people who the center is named after are still alive, and they are, they were sitting right in front of us. Mr. Frauenshuh told us that the tree in the garden was just transplanted recently and is a Swamp Oak, picked especially because it is close to a marsh area, because it can live to over 100 years old and because it grows very tall. It will be a symbol of a long life. There was a short program with an incredible singer who sings with the Minneapolis Orchestra, and also the Hospital choral group. That is probably the only Christmas program we will be attending, so it was perfect.
11/27/09 - HAPPY THANKSGIVING!
Joyce’s daughter had her tonsils out recently and is still recovering, so we will spend some time today with her and her significant other and then come home to rest and relax.
We have many blessings to count, and one of them is our family and friends! We are very thankful for everyone’s support and prayers through all of our health problems. We are both on the way up now and look forward to being home and with friends rather than at the hospital with doctors!
Doug & Joyce

I am finally “back” to give you an update.
Since our last meeting, Joyce has had two more Chemo treatments, so she has had a total of four with two to go November 19 and December 10. She still has not been able to gain any weight, so she is still way under her weight from before the chemo. Her eating habits are just the opposite from her normal diet—high fat, sugar, lots of protein, and eat, eat, eat! Meanwhile her “Chubby Hubby” can’t cut down!
As you may know I have had back problems since Adam and Eve, but PT put me in traction one session, and I ended up in the ER October 18. I had surgery for two protruding discs and a cyst November 6th and home on the 7th. Not a good time for me to be on my back, but if we didn’t do it now we probably would want to wait until January, so we went for it! I am recovering well. Joyce was in the hospital over a month, and I could hardly stand it one night!

It is nice not to have much to say!

Things are going quite well since the second chemo six days ago. Joyce had some nausea, but it is under control now with medications. She gets wiped out during the day, but that is partly because she needs to take some meds like at midnight. We think we have that worked out better now, so it can be earlier and still control the nausea.
Joyce is eating pretty well, small amounts, but has three meals and three coffee breaks each day. Gaining weight is not her strong suit. On the other hand, she does her walking and exercising faithfully to keep her strength up.
We are so thankful for your support!
Joyce and Doug

56 beats 293! Baxter made an appearance (beep) again. But we also have the Muffin Man.

We were at the cancer center by 7:20am. We got checked in and assigned to a room which we stayed in for the lab work and the chemo treatment. This new area is great, individual rooms with a reclining chair to be in for the IV, and there was Baxter, just waiting for us. Also, a TV, DVD, sink, and bathroom shared between adjoining rooms. The windows looked out on a beautiful garden area with a water falls and a labyrinth. The nurse said 4 months ago looking out the big windows, all you would see was orange satellites for the construction workers!
Absolutely the best news of the day was that Joyce’s Ovarian Cancer index, which started at 293 was now, before this treatment of course, at 56! The nurse said normal is between 0 and 30!!
The treatment got started much earlier than we expected so it was done before 2 pm! In the meantime, I went to the “Muffin Man” got us omelet sandwiches for breakfast and a very good sandwich for lunch. Much better than Joyce being in a hospital bed with a hospital meal and me down stairs at the cafeteria with my meal.
Joyce felt good the whole day and is a bit tired now but doing great. We did some walking and exercising today and will do more tomorrow. I will also keep trying to get her to eat more to get her weight back to normal!
Our next (3rd) chemo is October 1st. I will get out some (but not every day) updates before then
Doug

A week of near normalcy

We have had some very nice days weather wise, but also ‘life’ wise since we got home from the hospital. That was 8 days ago. We left at 12:24 pm with Joyce’s comment “The great escape!”
We have been walking quite a bit, we drove to an area close to us with a path, playground, and benches by a small pond. Just a real nice quiet time. Then we came home for a little nap.
Joyce is really gaining back her strength, and that is what we have hoping these days would do. Both of us are ready to get on with the chemo now.
We have enjoyed this time relaxing and cooking and eating, and just being together!
Friday we go to the cancer center for lab work in the morning and 300 minutes of IV chemo later. We plan on taking a bunch of stuff to do while we are there.
We will let you know how it goes!
D and J

The great escape was incomplete!

It was a wonderful escape from the confines of the hospital, but a you can guess we still have all the medications ( and no nurses saying “take these now”), and the home nurses visits, doctor visits, chemo therapy coming up, PT, and the mundane things like shopping and bill paying. I had lots of plans for today, but the only ‘normal’ thing we got done was wash a load of clothes and a load of dishes.
Every day this week has “medical” written all over it.
So this is our ‘new life,’ squeeze in some regular activities and continue the important and necessary activities for getting rid of the cancer!
Our doctor today looked Joyce in the eyes and said that she will be cancer free!
Joyce put it this way ”He looked straight at me with his big blue eyes and said you will be cancer free!”
But we still say it is wonderful to be home!
I probably will not be doing daily blogs now, so when I do, I will go back to sending an email telling you that I did.
Thank you for your love, prayers, tears, notes, and thoughts, we need them all.
Doug

THE GREAT ESCAPE!!!

As we were leaving the blue parking ramp at 12:24 pm on the 30th of August, 2009, Joyce said the above! What a perfect title.
I have to say that checking out of the hospital rivals sitting in a closed airplane for 6 hours! It is an endless parade of medical people giving last minute instructions and asking for a signature. I think Sunday is an OK day to exit because there is a bit less chaos. On the other hand where were fewer of our 4E friends around to say ‘goodbye’ and ‘thanks’ to. The nursing staff rotates most every day and night, but after 38 days and nights we got to know many of them. As you may guess they all just loved Joyce. We hope we won’t be seeing them on duty again!
It was great to get home, we walked around outside so she could see what was left of all flowers that I neglected watering some times. It was fun just to be together at home, but she got very tired.
We came in and just looked at all the mail, etc and decided that stuff would wait.
I just tucked Joyce into bed!
Good night.
Doug

IS SHE OR ISN’T SHE ??

Going home, that is!
This morning on rounds, the doctor said Joyce could probably go home Sunday. Then about 30 minutes later she said maybe today, then later changed back to Sunday. So, now everything seems geared to tomorrow! As you probably can guess, after some other false starts, we are excited, but nervous.
We will still be doing a couple shots and some more pills, but probably will have a home nurse for a while, and we still have the hospital bed at home too.
So now I have the biggest challenge of this episode; I have to pick out what she will wear going home.
I am pretty sure her favorite colors are green, purple and chartruse, so if I can just get the right combination I will survive!
After all of the accessories had been disconnected and we were walking the hall just holding hands, Joyce said “I would much much rather hold your hand than Baxter!!”
Doug

The Joy(???) of eating vs IV nourishment!

Joyce ordered scrambled eggs again for breakfast, but got a very small amount, so I went to the cafeteria down stairs and got some more plus french toast and we had breakfast together. We may be sharing meals like this for a while; the food in the cafeterias is quite a step up from the food going to the patients from the kitchen.
Joyce’s hemoglobin has continued to drop, so today turned out to be blood transfusion day. We had done some walking and she had done some other exercises, so she rested during the transfusion.
Her legs continued to be swollen, so they did an ultra sound of them. They were concerned about blood clots, but thankfully none were found! We felt better that it was done, even though that takes a lot of energy out of Joyce.
Exercise in the chair, PT, walking, drinking lots of water. These are our daily routines that will get us back home. Speaking of which, they are estimating going home soon, probably next week. We have heard that before!
Doug

I must be a mysterious alien!!

(Wednesday and Thursday are together, I slept at the hospital last night.)
Last night her arm got swollen enough that they had to cut off her armband so this was the comment she made when someone tried to check her name and birthday.
Joyce’s sense of humor is coming back—what a great sign!
Every morning is full of medical people checking everything. I don’t know why, but today it felt invasive and seemed to go on for ever.
Her room got a good cleaning and cleaning up, she got a great shower, bed linens were changed, PT gave her more excercises, more blood(of course), and a walk. She ate a couple spoonfuls of cream of wheat. Her breakfast had French toast and a sausage, which she gave me.
For lunch I had some warmed over pizza, and I was going to eat some place else, as usual, but she said why don’t you eat in the room? I did and it really smelled good to her. Probably the first time food didn’t set her back. Her lunch tray was chicken salad and a bun, and she had a little of each.
WEDNESDAY AFTERNOON
How fast things can change.
The scan of Joyce’s arm revealed a blood clot, most probably caused by the pic line! So out comes the pic line and up goes the hepherin. It is a good thing that Joyce is starting to be able to eat because the TPN is being stopped. The good news is just that, Joyce is tolerating food by mouth now, so we believe we are over that bump in the road. Just think, she hasn’t had anything in her mouth except a few ice chips since July 23!
So now Joyce will be on a “soft diet” for some time and we will see how her system reacts to having some food in it. Small amounts are necessary, so she will be eating 5-6 times a day for a while. That is what is next, but as usual, stay tuned!!

Thursday August 27, 2009
Today was weird, no one was around until about 8:00am. Usually there are medical people starting at least by 7:00, and the surgeon team is always first. They made up for it though, it was nonstop until noon.
JOYCE HAD SCRAMBLED EGGS AND HAM FOR BREAKFAST!!
AND MORE IMPORTANT, THEY STAYED DOWN!!
She does not eat very much, but this is looking good. She is going to be getting some of the enriched products to help build her strength and take small amounts 5 or 6 times a day. PT comes most days to work with her, and we do go walking as much as we can.
Her hemoglobin is still not recovering, so tonight she is getting 2 more units of blood.
She doesn’t have the NG tube, nor the TPN, but she still has the heparin and antibiotics and GIRD meds going through the IV!
The blood clot is gone, but she may have a urinary infection!
We get discouraged at times, but we get some positive things that bring us back up. And of course part of that is the encouragement we get from you. All the prayers, cards, email, and thoughts are very important, thank you!
The doctors and nurses and other staff are always very supportive with their thoughts and prayers.
Joyce is one incredible woman!
Unbiasedly,
Doug

Out, Out, Out damn NG Tube!!!!

Once again (number 4, but whose counting) the tube is gone, Joyce can turn her head to talk to people, or her husband!
She started with little sips of water, and then had little sips of decaf coffee, and broth.
“Here comes the food tray.” Is not exactly an event that warms her heart.
Everything is OK tonight. Tomorrow she will continue and may have something like cream of wheat. Her doctor is encouraging her to have only what sounds good to her and not to push it.
Walk, sit, rest. Draw blood. Clear the beep beep. How are you feeling. Walk, sit, rest…..
Another little change in routine, Doug started itching a little early morning. Luckily he was able to get a medical opinion, or 3, quite soon and got some benedryl. He sure got some naps today!
The highlight of the day was about 30 minutes of music therapy. It is very soothing and calming.
Doug

Improvement, Day two

The usual chaotic morning started before 7 am with two of the surgical team doctors visiting us. They were pleased with Joyce’s progress. Enough so that they said tomorrow she could have something more than ice chips. She hasn’t decided what yet, it is a big decision. They also said to “clamp” (disconnect, but not remove) the ever present NG tube. They ask about every hour if she is nauseous and she is not, but that was true with the other times also. It is the intake that causes all the problems!
She has walked twice and spent quite a bit of time sitting up. She still has enough “wiring” that she needs the nurses to get her up and on the journey. Each time she walks she feels and looks better.
Her blood sugar and other vitals are much better, but of course it is the medication doing it’s job.

Joyce & Doug

And on our special gourmet appetizer menu today, our famous “Ice Chip Delight!” Please do not over indulge!

The day started early with a C-T scan at 5:30 am. The hospital Doctor had ordered it in the evening. Then about 7:30 a surgeon team member came to see us and read the scan. He said the surgery was a success, the blockage was gone!

He said Joyce could go back to ice chips. She said “Oh thank you, thank you!”

Yesterday it was all JB wanted, ice chips! And now when she can have them, it is easy for her to ration herself.

Her hemoglobin was low so she got a blood transfusion, and her pulse rate is still high so she is getting a beta blocker to lower that.

PT came in a little later and gave her some more exercises and took her for a walk. Then sitting up for about 3 hours and she was ready for a nap. But of course there is no such thing as a good nap in the hospital.

Joyce has so many attachments to her that she has to have 2 Baxters and it takes about a half an hour to get her all settled in bed. It is about as tiring as another walk.

Tomorrow we hope for improvement in output so we can continue the present progress. We don’t know what is down the road, but we are cautiously optimistic that this time we will keep on that elusive improvement path.

Doug and Joyce
PS This was created by team D & J at the Hospital at about 7 PM!

Doctor was in to see Joyce at 6 am

Well, the doctor made it in before me today. He told her to swallow as little water as possible. No more ice chips for now! Just wet her lips with a swab whenever necessary! See how long you can do this--An hour, or two? We are not sure how long she is going to have to, but you can be sure she will do what is necessary to head us out the door!

Her heart rate was about 135 so he also scheduled a c-t scan. The scan showed a small blood clot in her lung, so they gave her heparin to get rid of the clot and TPA,a blood thinner. Her pulse rate went down to 115, which is about where it has been most of the time in the hospital.

We spent most of the rest of the day recovering from all of that. Joyce was so dry today that I had to do most of the talking. She would swab her mouth and talk a little and so on--Not fun.

By the end of the day we were pooped, but thinking about a short walk. We took one look at the IV - Christmas - Tree and decided she would just sit at the sink and get cleaned up.

The nurse weighed her tonight and, right now, she has regained some of her weight loss. Maybe that is temporary.

Once again, please call before coming to visit. It is hard to maintain your strength, much less increase it when you can't have liquids. The nurses let us know though that they are expecting some walking tomorrow.

Heaven knows you have to obey those wonderful nurses! Or else!

Surgery Day II, 9 PM Joyce was sitting in a chair beside her bed!!

Seven hours after 3 hour surgery, WOW!

The Doctor had predicted adhesions and kinking of the bowels and found more than he expected. He did 3 hours of work on them and expects that the chemo sessions will help also. We will know more next week, but are very hopeful.

We expect the next chemo treatment to start early September (September??). We plan on going to the hospital from HOME!

Of course, how Joyce is able to tolerate real food is another bridge to cross. It has been one month since anything but ice chips have crossed those beautiful lips (food wise speaking).

Joyce was very tired tonight after sitting up, so please touch base with us before coming to visit.

Tired, but happy, hopeful, and confident.
Doug

Goodnight!

Surgery is tomorrow at 10:30 am.
I am sleeping with my sweetheart tonight at the hospital!
Doug

Thank You God!

Every morning I wake up and say thank you God for Doug.
It’s not just the surgeons, we are on a journey with God!
God will not let me down. She never has and she never will!
That’s why I wake up every morning and say thank you God for everything.
It might be just making it through the night or just some little things.
Thank you God that I can eat ice chips, so it isn’t so boring.
Thank you God for clean hair.
Thank you God for surgeons who explain things to us.
Thank you God for neighbors and friends who are taking care of Doug.

Joyce

So....It isn't JUST about Gas!

The morning wasn't very old when some of the sounds we have been waiting so long for,came from the bathroom. GAS! And it came more than once. We were in heaven!
So we are three days before scheduled surgery, and the bowel is starting to work.

Enter the Surgeon. Sorry to tell you, but the C-T scan shows enough of a blockage that we will need to operate. There is too much going on in the "transition point" to be cleared out with just passing some gas.

DEFLATE!

It does give them more confidence that it is not a tumor because that would likely be total blockage. It also gives them more confidence that it will be taken care of relatively easily. Asked again, can it start working without surgery, his answer was less than 1% chance.

So it took us the rest of the day to regroup and rethink, and talk and talk.

And question.

Do we still have faith in the team that we have working for us?

Yes, we agreed that we had confidence in each one of the surgeons on the team.

We will stay the course! Period!

We will get you through this! You will be OK! This is not life threatening!

Mornings at the hospital start early. Today Joyce was preparing for a C-T scan by 7:00 and by 8:00 she was back in the room. Not too long after that the resident Doctor talked to us and then one of the Partner Doctors in the surgery group.

Joyce's white blood count is almost back to normal, and the other indicators say that she has beaten the chemo.

Unfortunately, the bowels are still not responding. The C-T scan shows that there is still a partial blockage. The Doctor said we need to do something and she is scheduling surgery for Friday. There have been so many 'maybes' that it hit us pretty hard. That is when the doctor looked Joyce square in the eyes and said with authority the words in the title!!

So, Joyce can do PT and OT exercises to keep up her strength up. We can go walking and head outside to sit on the boardwalk, and we can hope that the bowels open up!

And we can keep repeating and believing that the Doctors will get us through this and that Joyce will be OK!!!! And it is not life threatening!!!
Doug

On a scale of 10, I would rate today at 6.625

Joyce did get more sleep last night. She got two doses of the medication and slept until 4AM.

She was feeling a little low this morning, we both do at different times, but then--

The Physical Therapy person came and got her up walking. Not very far, but around a couple of times, And she had JB do some exercises. So this helped a lot to get rid of the blues!

Then the Doctor came in with more good news. Her white count was almost back to normal, her hemoglobin was better, and her blood sugar had gone down considerably. She said Joyce is not in danger of infection any more and her body is beating the chemo. So tomorrow she will get a C-T Scan, and will not have to drink the white contract stuff.

Joyce was talking to someone today and used the phrase "so this is our crazy life now." I have to say this helps me change my thinking. It helps me get away from daily expectations and look at a bigger view. This IS our life right now and looking at a day at a time puts us right back on the roller coaster!
Doug

Nights

Every evening when I leave Joyce, I think, maybe this night she will get the rest she needs and deserves!

Every morning turns out to be like this morning. I get there by 6:30 and she is sitting up with her eyes open, (I hesitate to say she is awake), and tired as the devil!

I wonder if anyone who is not drugged can sleep in a hospital bed.

So today she did spend time dozing. I helped with that, whenever I started talking, she fell asleep, how good am I.

Her pulse rate has been high today and blood sugar also, so she got a dose of insulin today. She has a difficult time calming down, partly because her hiccups come every so often and bring the thought that she may vomit. The NG tube is doing the job, and is not as painful as the last one.

She seemed better to me at the end of the day than in the morning, probably because she got some rest.
Tonight she will be getting 1 or 2 doses of a drug that helps with anxiety and sleep.

We asked the doctor today if we are dealing with a lazy intestine, or a partial blockage. She said it is probably a partial blockage. She had not seen the last C-T Scan images so she did not have any new information. She will be talking to us tomorrow.

I think I said in a previous blog that the hope was that the chemo would get things going, and the oncologist thought that could take two treatments. We are unclear on the status of that at this time.

I am looking forward to tomorrow morning and having Joyce feeling rested up, and ready to resume some of our walking!
Doug

Friday, August 14, 2009 2:00 am, Methodist Hospital, ER

Yes we are back again!
All day Thursday Joyce struggled with vomiting and a queasy stomach with a little pain. We talked to the home Nurses and they tried to contact some of the Doctors, with little response. We got the set-up of the TPN done an Joyce went to bed, but every so often she would vomit. Then she had a big one and we headed for the ER. We got there at 2 am and were in a room next to our other room by 4:00 am. We found out her white cell(?) blood count was less than one, so we got a private room.

We both dozed fitfully until about 7:230 when the put in another ( #4 ) NG tube. She immediately felt better and stopped vomiting and the pain almost went away! Through the day she got more liquid out than she had before, and it was still coming when I left about 9:30.

She needs to build herself back up with hydration, sleep, TPN, anti nausea IV, GERD IV, and more sleep! The doctors feel this is the only way to go right now and hope that it finally starts to work. This is basically what the plan was when we went home, so we really are restarting that.

I have to say we were happy to get home and do a few "normal" things, but it did not feel right to either of us. It just was not working right. So when we finally got a room in the Hospital, we both felt relieved!

If you come to visit please keep it short. Remember she is in an infectious room. If you have a cold, or are not feeling well please send a card or email or blog note. And flowers are not allowed in the room.

So, what can we do except keep blogging along, and keep you right with us!!

Doug

Welcome to the Battcher-Malchow Medical Clinic!

It's not too bad now that we are somewhat oranized, but the amount of stuff they bring us for doing the IV is mind-boggling. Plus, we decided we needed a hospital bed, it's much better for Joyce to have her head elevated. But even more crazy is all the stuff that gets used up each day.

Joyce has been very tired again today. Happy to be home, but just pooped out!
Yes, a little movement down there, but no celebration.

A little story. We were suppose to get a nausea medication that dissolved in the mouth, so she wouldn't have to take it with water. We did not get it at check out, so we asked our health care nurse to get it for us. She did her best, but could not get a prescription from the doctor. Joyce was on the phone with the Nurses organization and got promises but no results. About 5:20, as a last resort, I went to Walgreen's and got the right person, she made two phone calls and had the doctor paged, and 2 hours we had our medicine! Fantastic.

We are getting settled in with a different routine than before, and that we hope changes back pretty soon, so I may not be sending a message every day now.
I am also hoping the "happening" happens soon so JB can start eating and get her strength back so she is able t0 have visitors.

When things happen I will let you know.

We continue to need your wonderful words of wisdom and powerful prayers that keep us going every day!

Doug

Moving Day is never fun!

Well, we are home! And we are tired, tired, tired!

It's 11.10pm and JB is asleep, finally. About 2 hours ago I thought it was midnight, so you can imagine how it felt for her. Saying goodbye to people who have cared for you is not so easy. but it is easy to get in the car and drive away.

we were home before 5 pm, but reorganizing things a bit, checking mail that was not a card or letter, and just trying to relax still took it out of us.
Incidentally Baxter turned into a turtle. Instead of a pole, he is a back pack. I think more manageable than the pole. He just sits beside the bed feeding Joyce and night and in the am we can disconnect and Joyce will e free to move around. The only draw back is that Doug has to learn how to rig it up and take it down. The Home Health Nurse was here from about 6:30 to 8:30, checking us in and giving me my first lesson. A nurse will be coming in the morning and one at night until we and they are comfortable with what I am doing.

So keep working on waking up that bowel!

You are all fantastic!

To bed!
Doug

Moving Day is never fun!

C'Mon Baxter, Move it, Wee have places to go and Things to do!

Yes, we will be going home tomorrow!! Holy Moses!

We had visits from 5 doctors (2 before 8) and one social worker as well as some of 'our nurses' but the only that counts is our doctor saying "you need to get out of here!"

Joyce's tummy still isn't working, so she will have to use "Baxter" to get the nutrition, but our doctor thinks a change of scenery will do the trick. Sixteen days in the hospital is driving us crazy too.

They will program the IV so it will all be together and will be connected for 12 hours at night and then disconnected for the day. Joyce will be FREE!

A home health Nurse will get things set for us. After being in the same room as Baxter for 12 hours a day, I think we learned something Beep Beep.

We haven't gotten the schedule for the next chemo treatment, but will be close to the end of August.

We couldn't stop smiling tonight!
Doug

Is Baxter coming home with us?

Joyce had a very good night, she was still sleeping when I got there, so both of us dozed for a while. She did have somewhat of an upset stomach, but not bad. We had two Doctors visits before 8:30. The oncologist asked how her chemo treatment went, which was very good. The gyn-onc was there to talk about her gut. Unfortunately there was nothing to report except a gurgling stomach.

Joyce also got a shower and then we set our goals for walking, puffing, and belly dancing! By puffing, we mean the "Inhalation Sperometer," the thing that helps clear your lungs so you don't get pneumonia and increase lung capacity. Joyce has taken a class in belly dancing, and knows some of the actions are excellent for the body.

The gyn-onc doctor said maybe we need to go to a different environment to get the guts moving. This could be home, but she can't eat yet, so we would have to take the IV tower with us. The IV tower is made by Baxter! So, this is a possibility that may happen this week, unless other things change, of course!

So we walked and puffed and moved the body and she had a Healing Touch" session, and still now gut activity and still n o t h i n g ! Maybe tomorrow!
Doug

The First CHEMO IS down the Tubes (so to speak)!

The day started out lousy! When I got to the Hospital, Joyce was sitting up in bed, awake and hurting. The NG tube was giving her great pain every time she swallowed. She had been awake since 3am holding the tube in the least painful spot. The Doctor was in before 7 and said they would try heat and a throat spray. No answer to our question ( and probably yours) as to why these were not tried during the night. These two did help, but marginally. We went for a walk and then she was able to sleep for a while. The Doctor did promise that chemo would start today.

Joyce told me later that from the beginning of the day she believed it was going to be a very good day!!

At 3 pm the pre-chemo IV started.

We are finally on the road to getting rid of the lousy stuff in her body!!!

At 3:30 the real chemo started.
At 4:30 the NG tube was removed and Joyce got instant relief!!!
At 8:15 the chemo was complete. Through the whole 5 hour process, and especially after removal of the NG tube, Joyce was feeling very good with zero nausea. When I left at 10 pm, she was almost asleep and feeling great!

The only klinker of the day is that her bowels have not decided to wake up yet so she has to stay on IV nutrition until that happens. We hope the chemo helps that process along.
Doug
PS I must have a virus in my computer so I am doing this from Joyce's. Another issue that will be resolved soon, I hope.

My Beautiful Wife with a Beautiful Nose!

Today our Doctor visited us and after a series of questions about "output" he attached the NG pump and turned it on. Little if any liquid came out, indicating that the intestines are doing their job. Then he said, "you can only test the water so long and then you have to jump in." He then pulled out the tube and Joyce's beautiful face appeared. She said "is it really out already? My throat isn't even sore"

So she had a few swallows of something for breakfast and we walked and smiled and said to each person on duty "See anything different on my face?" We had some good laughs.

She had a couple of swallows for lunch and then for dinner had a few bites of graham cracker, softened up of course.

We walked a bunch today and rested in-between. The second time the doctor came in, he said he had stopped by two other times and we were both asleep.

We both enjoyed a laid-back day, walking, resting, laughing and reading your emails!

Toward the end of the day, Joyce's stomach started acting up, but when I left about 10:30, she was almost asleep and everything was still in her stomach.

Doug

1:50 PM we moved into a private room!!

Last night Joyce and her roommate traded trips to the bathroom about every hour. Neither one of them got much sleep, so Joyce was just as tired this morning as when she went to bed. For the umpteenth time I complained to the Nurse, Head Nurse and Doctor. Low-and-behold as we were talking to the doctor, the head nurse said we had a room. Just like buying a house for the first time!! Just think our own bathroom and our own silence! Well, not exactly silence.

The doctor said reconnect the NG tube for 4 hours and check the output. If it is below 100ml, we can try liquids. WOW! The output was low, but given what we had gone through, we opted for just some ice chips tonight so Joyce can get a little caught up on her sleep.

Naturally there were delays to the elusive "Sound asleep" BeepBeepBeep-Occlusion.
BeepBeepBeep-Low battery. You get the picture.

The hero of the night was the IV nurse. Joyce had gotten a new IV site this morning and had pain almost right away. It was looked at and adjusted several times and still hurt. Luckily we mentioned it one more time and the night IV Nurse said it probably hit a nerve and started a new site. Problem solved!

About 11:15 JB schussed me out of there when they were waiting for the IV nurse come and take care of the occlusion. I hope Joyce gets some sleep!
Doug

1:50 PM we moved into a private room!!

1:50 PM we moved into a private room!!

3:30 PM - NG TUBE CLAMPED!

The doctor was in this afternoon and said the fluid collected was low, so she feels Joyce's system is working again. The NG pump got shut off at 3:30, but remains in place. Joyce will still have nothing by mouth pending the results tomorrow morning. If she has a good night with no vomiting, she will start with some liquids and progress from there as the doctor watches the progress!!

So we are nervious and anxious and very hopeful tonight. Joyce was sleeping when I left tonight.

I think we are both getting "hospital syndrome" about now. Everything seems like it doesn't go quite as smoothly, things upset us easily, people including nurses talk too loudly, especially when Joyce is trying to get some rest. Someone else's IV beeps incessantly before someone clears it. Joyce said "Lets just get out of here!"

We decided to go for a walk to try to get away from the hubbub. A nurse's assistant saw us and asked if she could help. She found a family room that we had not seen before that was empty and had a beautiful view of the wooded area East of the hospital. Mostly we just sat, and mellowed out until BeepBeepBeep.....BeepBeepBeep....! Our IV was the problem, so back to the room we went, but it did help!
The NG tube is really an irritant and makes it more tiring to go walking, and that of course gets into the vicious cycle of getting more tired.... After the NG was clamped we were energized and got in quite a bit before bed time.

As is our usual ritual in the morning, we read the cards, emails and comments that keep us going through the day!
Doug

Joyce, did you see that article in the paper today about . . . .

Today was day of waiting! The nasal-gastro tube was put in successfully yesterday and our doctor wanted to see how it goes for a full day.

JOYCE HAD A VERY GOOD NIGHTS SLEEP!!

Doug said: That is the best thing that could happen today!
Joyce said: The best thing to happen today is that Doug is here! (Can you beat that!)

She was only up once during the night and slept until about 8:00. She still has not caught up with what she lost though and she did have a couple of naps today. That NG tube is doing the job (about 800 ml has come out), but it is a lousy thing to have hanging around and irritating her throat!

Some good things--No vomiting, her blood pressure is down, her legs are not as swollen, and her blood sugar is down.

Another really good thing is that she is getting hungry!! Up to now she could hardly stand to see or smell food. That is akin to me not ever wanting ice cream again! (Shutter)

Tomorrow we will see the doctor again and find out what she recommends. If we can disconnect from the NG tube and/or the IV, we can take a nice walk along the boardwalk in back of the hospital. Maybe I better bring a couple of sweaters!

Doug

We are Back, but not so far back! Nights are terrible!

Two of Joyce's' comments today!

And what a day it was.

Joyce has had 7 different roommates in 8 days. The private rooms are reserved for the infectious and hospice patients. The hospital, or for sure 4East, is full. Each time a new patient checks in it is chaos! And that goes into the night, which means very little sleep. Each time a patient checks out there is chaos with the family and the clean-up crew. This can happen at any time.

Today Joyce had juice for breakfast and vomited again. She had a little juice for lunch and vomited. She had hiccups and vomited. She was able to sleep (pass out?) a couple of hours, but we did very little walking because she was dizzy, and tired. In the afternoon the doctor decided she probably had a partial blockage and ordered a C-T Scan. Sure enough!

So tonight she got a Nasal-Gastric (NG) tube through her nose into her stomach to drain it out. Shortly 250 ml of fluid were in the bottle. It was not much fun to get the tube inserted, but after it had been draining for a while, she started feeling much better!

We think we are on the way again!!

She has to be almost sitting up when she has the tube in, so that is how she is sleeping. They did put a sedative in the IV, so she may sleep tonight (also her new roommate had her last visitors leaving before 9:30). The doctor said the tube may have to be in for 2 to 4 days, so I think we will be spending the weekend in our hospital retreat.

Joyce is very fortunate to have an assertive personal Dietitian. She worked with the hospital dietician to get a Total Parental Nutrient IV started along with the saline solution so she will be getting nutrients back into her body. To me that means a quicker recovery!!

The other thing I have mentioned before, is the absence of pain. I think the hospital staff can hardly believe it. It makes it incredibly easier to talk together and communicate wit the medical people. Thanks to Healing Touch!

Doug

PS: Thank you for your comments, either on this blog or her email. We look forward to reading them together every day!

Late news

Joyce just called me from the hospital (11:22pm)--She just vomited.
So we regroup in the morning.
She said she feels much better now and can go to sleep.
Doug

Be sure to leave the light on for us!

Because Joyce will probably be coming home!

Yes, we were kinda in shock too when the Doctor said that to us. Yesterday she had some herbal tea, and today we had some broth and tea in the AM and at noon. Her gut seemed to start back up today also, and the Doctor said that was the key. She has been practically pain free, we do a lot of walking and sitting up, so the Doctor said she could get well faster at home!
Tonight she had a real meal of chicken strips and mashed potato and gravy. She did not eat very much of it, but she felt fine.

We were both very apprehensive about it at first, the last thing we want is to end up coming back in a day, but things went well tonight and we have all day tomorrow to make the decision, so we are just going to wing it tomorrow.

Also Joyce did not sleep well last night so she was very tired today and we are very tired of hospital life!

We didn't play any checkers today, but she did have a Healing Touch session and a hand massage by a Volunteer that she said was wonderful.

She didn't get her meal tonight until about 7:00 and by 8:30 she was snuggled in bed with a warm blanket (and finally warm), ready for a goodnight kiss.

Joyce's niece sent this message today.
We are so thankful for your faith and the faith of your family and friends. It is so comforting to have all those prayer warriors praying extra prayers for you!

What can we say but A________men, A_________men!
Doug

Today started with Herbal tea!!

Yes, we took at least one step forward today!! Just check this out---
Yesterday the Doctor said nothing by mouth, period! Today, with signs of an awaking gut, Joyce sipped some herbal tea, about 1/3 of a styrofoam (hospital crystal) cup, actually. There was no vomiting all day, so tomorrow will be broth.

Of course we had our usual routine today, but we spiced it up with a game of checkers, twice.

We also added a new dimension with a shuttle I-Pod that our friends sent us. It was all set-up and ready to go with almost 200 songs. And one of the first songs that Joyce heard was a Beatles song!!

The next adventure was a shower with no tubes connected, what a deal.

Next we met with one of the hospital dietitians. Joyce thought this was a great meeting, so totally new thinking when she starts chemo-therapy. Doug was there too.

We met with the Oncologist Doctor who will be our Doctor for the chemo treatments. This was our initial conversation about chemo-therapy, so it was another education session. We still have a lot to think about and absorb, but we are very happy that he will be our Doctor.

And finally the last and probably best thing of the day-a warm blanket to snuggle up it.
(and maybe a couple of kisses too!)
Doug

Back on Track ? Maybe, but take it slow!

We are very hopeful that Joyce's body is waking up!! But everyone agrees that we need to go slow and be sure of each step.
It was just tonight that things started to happen, so we will start a bright new day tomorrow.

This morning the Doctors decided needed to have absolutely nothing by mouth, not even a moistened swab on her lips, because that activates the saliva glands and they didn't even want that going down her throat. She is still getting IV nourishment, and really doesn't even want to be around food or the smell of food. She has very little pain, and does not get any pain medication at all.

We have also had the help of a Healing Touch session last night and today.

Most of the day today was spent with the routine--bathroom-walk-sit-use the inhaler -rest-bathroom-walk...

Joyce had a new roommate today. Barb had ovarian cancer surgery four years ago. Doctor Argenta (Joyce's doctor) did the operation and she was in for a chemo treatment. She does not get sick from the chemo treatment and is doing fine.

Thank you for the Hiccup remedies. One of our Nurses Aides told us that Joyce has someone thinking about her every time she hiccup's! How is that for positive thinking. Joyce thinks that someone is saying a blessing for her whenever she hiccups! The power of positive thinking.

Doug

OK But it is only one step back!...Hiccup!

No tubes to get messed up . . .solid food on the menu for the first time . . .sitting up . . . walking.
But not feeling so good. Take a bite of food for breakfast and vomit.
Take a bite of food for lunch and vomit.
Time to get back to the IV tubes, and the Doctor orders an X-ray of the stomach.
The Doctor says there is an obstruction in the small intestine. so no food by mouth!
And still those lousy never ending HICCUPS!!
A peaceful, calming, Healing Touch session tonight and another tomorrow.

OK, but it is only one step back!

And keep the prayers coming.
Doug

Gassed up and celebrating!

Joyce started the day with a liquid diet. Cranberry juice, and jello!
Not just jello, terrible, terrible jello!! Joyce said I can't even talk about it.
BUT the day got much brighter when her body came alive and She got Gas!!
So finally she was able to start on a regular food diet. She was also able to shed all of her tubes, both IV and drug. She no longer is "hooked up."
She gets her pain killers by mouth every four hours and it is working fine.
She also sat in the chair 4 times and walked 4 times. The last two walks were just with two of us at her side for support. Getting back into bed is a little hard, but getting better each time.
Again, I am amazed at her progress!!
We will see the Doctor tomorrow morning and find out more about chemo therapy and when she can come home.
Thank you for your thoughts and prayers, please don't stop!
Doug

Moving Forward...Forward...Forward!!!

Last night was "...a night that would never end..." for Joyce. She woke up several time thinking it was morning and she had to call me because the Doctor was coming, when really it was still the middle of the night.



But, that was last night and today is spelled PROGRESS!

The day started with a healing touch session that may have been the trigger for the rest of the progress that happpened all day.

Doctor D was there in the morning and after examining the reports from Friday and Friday night, recommended a blood transfusion. He believed it would get her body back on track and he was right. Half way through the process, Joyce's blood pressure and pulse rate both came down and she seemed to be less dizzy. He also said she could be on a liquid diet and get started with some meds. Happy day!

Joyce sat up today for up to 2.5 hours and walked four different time, two of the walks over 200 feet! These are unbelievable considering she was in major surgery 40 hours previous! Joyce believes this dramatic turn-a-round was due to the healing touch, and who can argue!

Sometime during the afternoon she said "I must be getting better, I'm cold!"

Doug

A Day of Waiting July 25, 2009

The day had a good start with Joyce getting a Healing Touch session from Carole. Then came removing the oxygen and stomach tube from her nose, sitting up in a chair for 30 minutes and then again for 45 minutes.
Joyce was feeling and looking much better today and was back on the same planet with us. She took frequent "cat naps" all day, but who wouldn't, after starting the surgical procedure yesterday at 6 am and not in recovery until 3 pm!
This is all good progress.
Then we started waiting--
For Joyce's body to say "OK, I am ready to move on." Because without that confirmation, Joyce has to keep the IV that is giving her nourishment, and she cannot take any thing by mouth. The nurses assure us we will know when the body is ready!
We were also waiting for a Doctor from the surgeons group to come talk to us. We knew it wouldn't be Dr Athena, because he was going on vacation, but someone from his group was suppose to see us. We waited and waited and waited. We waited until 10:30pm and finally Joyce said "I am going to sleep!" and Doug said "I am going home!" And that is why I am here at 12:15 writing to you.
With Love,
Doug

Surgery Day July 23, 2009

This morning we woke up before 4 am. We talked for a while about the day ahead, and managed to throw the covers off and get up by 4:30. Plenty of time to water some flowers, take a double cleansing shower and gather some crosswords to take and head for Methodist Hospital. Pastor and friend Don Portwood and Dr. and friend Pam Paulsen soon joined us at the hospital and were with us most of the day. Their support this day was critical for me!
The operation took 5 or 6 hours!
It was more complicated than the gyno-oncologist expected, because of the involvement of the omentum, but he said that the outcome was optimal (which I think means that they did as much as they could and were successful in doing it.)Doctor Argenta removed the cancerous parts of the omentum, the ovaries and a small section of bowel. The good bowel was stitched back together. There are little rice grain-sized bits of cancer scattered about which could not be removed, but those are small enough to respond well to chemo, so she will start chemo once she recovers from surgery.The best news is that Joyce did not have cancer in the liver or kidneys.Joyce will be in the Methodist Hospital over the weekend at least. Tonight she was kind of awake, but very tired, but not in pain, so I hope she gets lots of rest tonight. If you do come to visit this weekend, please think about what she has been through and keep the visits short. You can call my cell phone number to check on how she is doing. That number is 612-616-3724. You can also leave messages on the blog, or Joyce’s email.
Thank you for your continued support and prayers.
Doug

Ready To Go

I am ready for surgery. Doug and I have had two weeks to prepare and we are ready. Each day has been memorable as we have learned more. Our pastor, Don, has helped both of us so much. He is an eight-year survivor of kidney cancer (usually fatal) and he has many insights and tips. About a year ago he told me about Healing Touch and introduced me to Carol, who is a former nun, experienced practitioner, teacher of Healing Touch at St Catherine's University and has started programs at several TC hospitals. I am in good hands! Every time it is a healing and spiritual experience. Today she taught Doug how to help reduce pain and reduce effects of anesthesia in my body. So he will also have an active role in caring for me.

I'm calm, confident in the skill of Dr. Argenta, gynecologist oncologist, who is doing the surgery. I plan to relax and let God's healing power work in me.

We still basically know nothing except that surgery is scheduled for 8:00 a.m tomorrow, July 23. After that we start a new chapter. Thanks for your prayers and positive thoughts. Love, Joyce, Doug, ChanMy and Larisa

to contact us

Just a reminder. To leave a message for Joyce, Doug, and our family please use Doug's or Joyce's regular e-mail address.

Diversion 7-19-09

Where were you 40 years ago on July 20, 1972 when the Apollo space walk, firt landing on the moon took place?(Doug just exclaimed as he read that. Well, it is a diversion!).
I was in Los Banjos, Philippines at the University of Philippines where LeRoy and I were training in tropical agriculture and home economics before going to Laos in International Voluntary Services. We got up early that morning while it was still dark and walked to IRRI (International Rice Research Institute) where we sat with people from all over the world and watched the moon landing on television. Everyone cheered. Pretty exciting!

The beginning

This began July 8 about 4:30 a.m. when I had severe pains in my abdomen. After a call to neighbors, Shelley and Joe, to confirm that I should indeed go to ER. (Shelley is a physician with Health Partners.) The pain decreased, Doug took me to ER. Bottom line: I had a ct-scan, which was read by the ER doctor to be ovarian cancer. She wanted me to stay in the hospital and have surgery within a day. Needless to say that didn't work and I got to go home. Whoopee!Doug and I have had wonderful times together and celebrated our 13th anniversary.

Monday, I met my gynecolgist oncologist, Peter Argenta, MD. He is medical director of Gy Onc at Methodist Hospital in St Louis Park, U of M professor and has credentials a mile long. Best of all, he's personable, caring and Doug and I like and trust him.

We looked at the scans with Dr. Agenta. He said it might not be ovarian cancer but something is going on and he wouldn't know until he could look inside but he would remove my ovaries, the omentum (fatty layer around organs) and anything else that is suspicious.

Surgery is 8:00 a.m. July 23 at Methodist.

Right now I feel great. I have no pain. We walked more than a mile today in South Minneapolis by my former home by the Creek and tomorrow I'll go to aqua aerobics.

Thank you for keeping us in your prayers, praying that the cancer is contained and Dr. Argenta can remove it all. I feel completly surrounded in God's love.

Love, Joyce

The beginning

The start of our first Blog