Hospital Days 5&6

Tuesday 2/10: Heather was asleep when I went to visit her on my breakfast break but she awoke when her nurse came in and seemed alert and in good spirits. The neurosurgeon came in and explained to Heather that she had so many lesions that he could not remove all of them. He started talking about the big tumor pushing on her brain stem and how he could easily remove that one, but that it would not change her outcome and cure her. After that he turned to me and asked if I had any questions. I told him that I had been discussing this with Scott and wanted to know why they still could not remove the tumor. I explained that she could not walk well, use her hands anymore, hold her head up straight, and stop vomitting. I asked him if we removed the tumor would it improve these symptoms. He was very receptive and explained that removing that tumor would be simple and low risk and it would help to give heather the quality of life she would want in her last days. He said if she had less than 3 months to live it would not be worth it. I told him she had til the end of the year. He even said that if it was his sister he would do it and heather could go home and be able to use a walker and get to the bathroom and see and talk to her children. I explained all of this to heather and it was the first time i really saw her smile wtihout showing a front for a visitor.

When i returned later Heather asked me to tell Scott about the surgery. Later that night Scott and Heather talked with the oncologist and told him they would like the surgery done. He asked Heather if she was ready to fight? And if she wanted to he would fight too. He told Heather to think about it and she told him there really was nothing to think about. That she wanted to do it. I have mixed feelings. I really do think that the surgery is a good idea. Heather will never get home or get around if she does not have her tumor removed that is causing most of these problems. If she will live till the end of the year, then she deserves to have a good quality of life and not be nauseated 24 hours a day and to be dizzy and weak all day long. I know people may not agree with that as some of my extended family have raised questions. It is not a choice to prolong life, just make what is left tolerable. The tumor is very superficial and it will be a very easy procedure where they won't even take or touch any brain tissue. I have taken care of kids who have had this done and they go home in 2 days. Heather will continue her radiation after that. I just don't know if chemo is the way to go as it will then make her so sick and she may be miserable. But is guess you don't know how sick or bad you will feel until you try it and Heather has lived with chemo for pretty much her last 2.5 years of life.

Wednesday 2/11: Went to see Heather today. My sister Heidi was at her bedside while Scott went home to shower and play with their little boy. Heather was asleep within a few minutes she awoke thorwing up. It was a lot of emesis. she then had to go to the bathroom but said she could not walk today. I had to grab someone to get a bedpan. I then put heather on that myself and cleaned her all up. Heidi was so glad that I am a nurse cause she said she had no idea what to do. Heather could not use her legs today. She is not walking at all today. She slept the whole day. She would wake up and say hi to her visitors and have about 2 lines with them and fall asleep while they answered one of her questions. Not sure if it is all the anti nausea meds making her groggy or the radiation catching up with her now that it has been 3 treatments. Her heart started to have irregular beats. That can also be due to the tumor on the brainstem or her electrolytes. She is to have an echocardiogram of her heart tonight. She is on IV nutrition now instead of just IV fluids. She looked today like she did the day she came to the hospital. She has been doing so good and was so excited about the possiblity of feeling better after this surgery that it was heartbreaking to see her like this today. I felt so good yesterday and today and at peace with the decision for surgery and now so bummed she is not doing well.

Hospital Days 2-4

So excuse the greasy hair (hence why i am wearing the hat) and my adult onset acne and non make up face. Heather has a good style going on too. I asked her if she stuck her finger in a light socket when she got up this morning. Too cute I love it!

I am sure that after the post on Saturday people are curious to get caught up. I am proud to say there is not much to say. On Saturday Heather was a new person. Still weak, but had color in her face and her spirits were up. She was able to get to the bathroom in her hospital room with the walker. That is about as much physical activity as she can endure. She did not get radiation over the weekend so maybe that helped her feel stronger. However, she did have an MRI on saturday so the neuro-surgeon can take a better look at her brain. A cat scan is like a polaroid it shows you an image quick and id's big tumors or masses. The MRI allows you to see more of a 360 view and you can see all parts of the brain. The MRI ended up showing that instead of 4 lesions that are on the original cat scan, that Heather actually has 10. It does not change the current plan as she is still going to get radiation. But of course must i say it again, can we just get a break from constant bad news???

Heather is having difficulty holding her spoon or cup to feed her self, but not giving up. I told her it is ok to be a little sloppy to maintain some autonomy and still do some stuff for herself. She can not hold a pen well to write and her soduku (don't know how to spell it) puzzle was a bunch of scribbles instead of numbers. She had a bad Saturday night with some vomiting and nausea. She does not get good sleep either at night. She has been doing better with the vomitting yesterday and today and they are going to give her some sleeping meds tonight.

We don't know when she will be getting home. Her condo is on the second level and it would be so hard to carry her up and down those stairs daily to get her to and from radiation. She still needs to be in the hospital as she cannot eat much. So the next step will be what to do for nutrition. Iv fulids is electrolytes and sugar, but not nutritional. There is some IV stuff you can get called total parenteral nutrition that has all kinds of vitamins and stuff in it. So she will either need that or a tube in her nose to feed her. I hope not that. Plus i still think that will make her barf.

Today the neurosurgeon came and told heather the results of her scan. After he left she pretty much put it together that her life would be short. Later when her friend came to visit she sat there brave and told her friend she would be dying and thanked her for being a good friend. That is my Heather gracious and kind even in a moment like this. Thanks to everyone who has emailed or commnented on this blog. The memories and love you have shared for Heather with me are precious. People we have not seen or spoken to in years have some how found this blog and some even have shown up to the hospital. It is amazing how wonderful our network is as members of the church.

Address

Some people have wanted to send cards to heather which i think will be wonderful. Even if she does not end up coming home as soon as we hope, we can bring them to her in the hospital and i know that will cheer her up. I am hesitant to just post her address right here on the blog. So if you would like her address please email me at cheriseluedtke@hotmail.com and i can send it to you.

A turn for the worse

Well as if the last blog was not depressing enough. Here is the latest news. For about one week now Heather has been very sick. SHe has been throwing everything up not eating, and can hardly walk. For about a month my sister Heidi and i have been commenting on how mentally slow Heather has been. She takes sometime to process info and to respond to you. It seems like sometimes she does not even remember she was talking to you. On Wednesday night i went to Heather's house and there i had to help her get into the bath tub and i had to bathe her and wash her hair. Nobody should have to do this to there 31 year old sister. It was all i could do to not ball my eyes out. It was extremely hard because she is so disfigured from her double masectomy. While i was getting Heather out of the tub she had to sit on the floor because her left leg would not work. I begged her to go to the emergency room but she said if she was still sick in the morning she would. Well she did go to her oncologist the next day and they rehydrated her. I was pretty upset that they did not give her as much fluid as i thought she should get. She was to go back to the doctor on friday (yesterday) and get more fluid and an ultrasound of her stomach to see if there was fluid in it causing her to throw up.

I have been sick so i slept in yesterday and turned my phone off, something i never do. I awoke to here that at 0800 in the morning on friday heather had a huge seizure and was taken by ambulance to the ED. She was sitting in bed getting ready to go to the doctor and my mom handed her her toothbrush and she could not hold it. SHe then started screaming she was dying and had a good seizure. My mother called 911 and Scott (Heather's husband)kept trying to keep heather breathing while my father gave her a blessing. When the ambulance got there she had just stopped seizing and all she could say was she wanted her daddy to hold her. So my father who is petrified of hospitals bit the bullet for his baby girl and rode in the ambulance. At the E.D. they did a cat scan of her brain and found that she has four tumors in her brain. The largest one is 4 cm and is pressing right on her brain stem. Hense why she has had memory problems recently, not able to move her leg very well, and all her throwing up.

I was extremely upset by this as she just had a scan which we got the results only 4 days prior. THey did not mention any problems in her brain. As i probed for answers to this i found that her last scan two weeks ago only took pictures from her neck down which is why they did not know this. I just don't understand how come the doctor did not scan her brain after he knew her cancer was in her bones. Being a medical professional i know that once it is in the bones, the next place it takes up as residency is the brain. Heather already had radiation therapy on her brain yesterday, and will for the next 12 days or so. However, they are coming to talk to her on Monday after she gets and MRI to discuss if surgery is an option and if heather even wants to do chem or radiation. The oncologist met with Scott cause Heather was so mad at him she did not want to talk to him. He told Scott that heather's days are numbered on this earth and if everything was done to treat her the longest she would live is to the end of this year. I don't think she will make it that long. My guess is 3-6 months, and quicker if she does not get any treatment.

I don't know how to keep going on at this point. Obviously life will and others have done it when there loved ones pass, but right now i am so angry and upset and feeling guilty that i did not push harder to get her to the specialists at UCLA. She chose to get a second opinion here in orange county rather than there and i felt i had pushed enough. I now realize that is not true. I failed my promise to do all that i could to cure her. I just wanted to update everyone as i know Heather's friends and family read my blog since she does not update hers often. I feel so much for my parents who have to loose a child and for Scott who will loose a wife at the age of 32 after only almost 7 years of marriage. I am grateful that Tristan and i moved so close to them so that i can be here for Heather at this time and that I can be there for her children for the rest of my life. I have promised her to help raise them as my own children, that is the least i can do for her.

Much thanks and love for all who have our family in their thoughts and prayers and to my husband who held me til 0400 this morning when i finally stopped crying and fell asleep.

Latest Heather Update

Well the Terry/Luedtkes have all been sick. I think Heather's kids started it and unfortunately she got it really bad too. Both my parents were sick and now Tristan and i have it. It is the worse cold i have had and the longest. Due to our illness I did not get to update my blog about heather's latest scan and some people have been calling me to ask how it went. It looks like her bones are improving with this new chemo and bone strengthener, and the tumors she has in her liver and lungs shrunk. However, there are now more tumors in both the liver and lungs. Can we just get a break here???? So the new plan is to do some very strong IV chemo. IT is the same IV chemo her previous doctor wanted to do, but this new doctor felt it is very strong and dangerous and should only be tried if the oral chemo failed. Well it looks like we are back to where we were a couple of months ago. The oncologist has talked to over 15 other doctors and they all say heathers case is baffling. How can it shrink some and yet new ones grow. Everyone is trying to put their heads together in the oncological world and figure this out.

Heather has been very sick on this oral chemo she has lost 15 pounds in the last 2 weeks and she throws up all the time even on her week off chemo. She is very weak, pale and frail. She can't keep anything down so she is so dehydrated. She can hardly walk around the apartment and she has to have help to get up and down the stairs to there condo. I hope this new iv chemo will be like the last where she is so sick for a week but then has a couple good weeks. Thanks for everyones thoughts and prayers. I will keep you posted.

On a side note. Heather's daughter Hannah just loves her uncle Tristan. THey were playing in her room the other day and of course Hannah wanted to play pretend as always. She has quite the imagination. She told Tristan that he was a boy from school and he wanted to play with Hannah cause he thinks she is also a boy. But Tristan is to act surprised when he finds out that Hannah is a girl. She just looks like a boy cause her head is bald from her cancer. Ok does that not break your heart that a 5 year old is role playing this all out. She also told me that she thinks a boy in her kindergarten class has cancer cause he has funny looking hair that Hannah thinks is a wig. I cant believe a 5 year old knows so much about this.

What have the Terry's been up to?

Answer is a whole lotta nothing. We have been keeping busy, but not doing anything exciting. Right now i am trying to catch up on "Lost" for this season while people are pounding and ripping out our kitchen lights. Yes our ugly panels of light surrounded by nasty wood will be gone today. We are getting recessed lighting today and crown molding in the little box that is cut out of our celing where our old lights were. It should look really nice and with this bad economy we got it all for half off. This is our last home improvement for a while (years). Over Tristan's christmas break we installed 2 bathroom fixture lights which we got for free from our citibank points. We also got some toilet paper holders with a wedding gift card we just got. Then with our christmas money we bought new door handles for all the doors and painted all the doors and door jams (actually my dad did the painting). It all looks so nice. And of course i love it cause we did not really have to spend any money to do it. I am a saver, so it was really hard to spend the money on the lights and not save it. However, we had to take advantage of this economy and get this kitchen spruced up. We have decided to post pone getting new windows and painting the outside of the house. Our goal is to save enough money to pay for most of Tristans grad school. A lofty goal, but if we can realistically pay for half of it that will be wonderful. Besides, once we got the new garage door, the house looked so good it doesn't need to be painted yet.

Tristan passed his EMT class he took over Christmas break. It was a challenge and there were weeks we did not know if it was going to turn out well. Yet Tristan stepped it up and on the last test he got a 96% and then he passed the final with 80.6%. YEAH!!! Now he is preparing for the national test to be an EMT. He takes it on Monday Feb 2nd.

As for me, I got another job. Yes that is three jobs on the tally sheet. My friend Sarah text me while I was on the way to the interview. I told her I was interviewing for a job and she wrote back asking me how many jobs a girl needs. Well in this economy it is more than one. In november we found out that my CHOC job was cutting our night call for the nurse practitioners. I was to start in november taking call from home one night a week for 300 bucks a night. We were counting on that money as our savings but they cut that program due to the debt the hospital is in. The month we bought our house, they cut my hours from 40 a week to 36 which cut our income and left us with no savings. THat is why we were counting on the night call money so much. To make up for this I am continuing to teach for Cal State Long Beach one day a week, but that will end in May. I needed to find a job for the summer so we can keep saving for Tristan's schooling. I called up Cal State Fullerton and they are looking for peds teachers for this summer. YEAH AGAIN! I went and interviewed and I will be teaching two summer sessions to total 11 weeks this summer. I am really excited to have this search out of the way.

I still have Christmas pictures to post and hope to do so this weekend. Sorry it has taken so long to write. I will also be updating about Heather as she just had a scan this week and we will find out on monday feb 2nd how it turned out. She had been very sick lately with the chemo and is loosing weight now from it so the doctors stopped increasing her medicine. HOpefully the scan will show that the cancer has not spread any further. It would be nice to have it show it improving, but i won't hold my breath.

Happy New Year!

Well, I have a bunch of pictures i need to post about our December adventures. There were not many due to Tristan's busy schedule, but we had some great times. I know how to post them if they are already loaded on the computer, but of coarse Tristan has not had time to and i don't dare try on my own. So those pictures will have to be on my next post. For now you will be stuck with the usual writing only posts. One of my friends Heidi B. did a really cute post where she listed all the months and put a few highlights from 2008 under each one. I thought about doing that, but was not sure that i had more than a few highlights for the whole year. But i do want to share some of the funny things i have learned in 2008.

1)Never tell anyone you play the piano, not even if it is the Bishop asking, or this will be your calling for life. (I was able to avoid this until i sat in the Bishop's office and couldn't lie to his face, but next time perhaps I will have the strength to do so...OK probably NOT).

2)If you think some of the people in your ward are strange that are inviting you over, they probably are. We have had some very interesting experiences with this.

3)Surely my parents must have bought Tristan and I our house, or atleast I am finding out that lots of people think we were helped out. This is really funny cause if you know my parents this is so far from the truth.

4)My favorite hospital story of the year is : There was a patient name La-ah. Everyone was making bets on how to pronounce it. Most decided it was lauh or laay but nay nay. Mother informed the doctors that you "pronounce the dash", it is pronounced ladashah. I laughed so hard i was crying. Who would do that. Oh yes, a fifteen year old having a baby that is who.

5)Top favorite quote of 2008: One of my friends i made from when i worked at UCI always says this. Her children moved to virginia at the beginning of 08. It was quite a shock to them at how backwards and hickish people were in the area they moved to. To comfort themsleves that they were not so badly off and that it could be worse, they made up the following slogan: "Virginia, its better than Bakersfield." Ok lets face it folks, what isn't better than bakersfield its pretty much the armpit of california. I have some great friends from there that i love dearly ,but i can't help a good laugh eveytime i hear this saying.

Well, that is just a few of my random thoughts on 2008.