Goodbye Heather (8/31/09)

Today at 4:29pm Heather Ann Luedtke Chapman passed away at the young age of 32. She will be greatly missed and was loved by so many. It was a very peaceful experience. Unfortunately I had an OB appointment and left for that. My plan was to be gone about one hour then come back. Of course the doctor took forever to get to me and I did not get seen till about 4:30 when my appointment was supposed to have been at 3:40. I called my dad as soon as I was done with my appointment and he told me she had just passed about 15 minutes before. I could not even cry cause I was so mad that I had missed it. But I had been there for the morning to be with her. I just always thought I wouldd be there when it happened. Her funeral will be on Saturday Sept 5th. I think the time is set for 10:00 but I will be posting the official address and time as I get more information. Thank you to all for your love, support, and prayers for the luedtke/chapman families.

More on Heather (8/31/09)

On saturday I had to work up in Hollywood. I got up at 5, and went and picked up a co-worker and then we meet another co-worker at our hospital in Bellflower so we could all three car pool. We had just gotten on the 101 when my phone rang. It was Scott saying Heather was not doing well. I said well I am not driving and I have to do this orientation so I will try and get Tristan to pick me up when he wakes up. Scott said but she is asking for you. I called Tristan who keeps his cell phone on silent when he sleeps and since it was about 7 he was not close to being awake. I called my parents, my dad was on his way out to Heather's. I told my dad to see what was going on and call me and then he may have to come get me. I hung up the phone and my co-worker did not even say anything. She just got off the free way and turned around. She drove me all the way back to my car and then the two girls had to go all the way back to Hollywood and were going to be so late. BUt that is what friends are for. At my new job I am working with several girls I worked with for the 5 years I was at UCI. 3 of them i am extremely close to and what a blessing it has been to work with them again. It is like being back with family, which is something I really need right now.

I drove to Heather's to find she was having some difficutly breathing despite the Oxygen and was very anxious. She would try and talk, but it sounds so mumbly you can't really tell what she says. Sometimes she is clear though. She could not get comfortable, she would not drink much or go to the bathroom. After giving her a cocktail of medications for pain and anxiety, she finally rested and looked comfortable. Jean, her friend and roomate from BYU, came to visit which is a double bonus cause she is a great nurse and was able to help out. I went home and cleaned and grocery shopped. Then on my way back to Heather's my sister in law text me saying Heather is asking for you and crying. I was already on my way and I only live 10 minutes away. We stopped and got gas and when we got there she was asleep. She never woke up the whole time we were there. She is getting weaker, but yesterday my mom was able to get her to drink some of her smoothie and to have soup broth. It is now monday morning and I will go and see her for a little bit today. She tries to tell me things but I can't make out the words sometime. Wish I knew what she wanted to tell me.

My mom was complaining about how we won't tell anyone what name we like for the baby and was saying how that means she won't like it. Heather was lying down with her eyes closed and all of a sudden sat up and pointed at my mom and told her "Mom it is not your baby". She lectured my mom on how it was none of my mmom's business and I can name the baby whatever I want. Then she laid back down and closed her eyes. Thanks Heather for always standing up for me. Even when you are so sick you are still being my big sister. Love you.

Good bye P.P.

I had an ultra sound today. The NP already called me and said that like 90% of the people with Placenta Previa, mine moved. So no more restrictions (like I was following them anyway). I am still going to try and be off my feet as much as possible at work and have others lift and move my patients so I don't throw myself into early labor. Everything else with the baby looked great too. Perfect heart, heart rate, and all structures are perfect. I was kind of sad after she called cause I was getting used to the c section idea. After all there were lots of pros. I would get to pick what date the baby would be born so we could work around Tristan's schedule, I would not have pain/labor, and I would get 2 more weeks off work. I was measuring a few days behind what I am supposed to be. But my belly is small so maybe the baby is just small. Or maybe my date is off. I go to the doc on Monday. Kaiser does not accept anybody elses ultra sounds is what I was told today and they don't accept other doc's due dates they have given you. So I probably will get a whole new due date on Monday. I was just hoping to avoid a december delivery.

Heather

I know people tune into my blog to read about Heather and there has not been much about Heather in the last 5 days. The thing is there is not much to report. It is the same thing each day. Either she sleeps a lot or she is constantly agitated and moving positions and can't get comfortable. She still has her moments of being with it and her moments where she does not even know who you are. I had my first one of those on Tuesday. She said she knew Cherise was her sister but I was not Cherise. It about did me in. It is really hard to watch her get so combative and hallucinate. You want to help her but you can't cause she does not believe you when you tell her those things are not really happening. Then she gets so angry she can get a little mean. Which is so not Heather. Heather has always been the docile one. Shy and quiet and sweet. Tristan keeps reminding me that this is not Heather to not take what she says personally. My parents remind themselves the same. Perhaps that is why they can be with her from the early morning hours until late at night without ever taking a break. Between the meds and the cancer in her brain and her hallucinations none of these horrible things she says are her talking. She has kind of reverted back to a kid. She says she wants to be a good girl. She gets mad if my parents don't let her get out of bed (she would fall if she tried to get up and walk around by herself) and tells them what mean parents they are. My dad just smiles and my mom apologizes and says she was never a good mom. OH PLEASE, she is the best mommy ever.

We have been so fortunate to have so many people help us. Heather's ward is wonderful. Right now Scott is off work for a week and people from the ward come in and help him overnight with Heather. This is nice cause my parents can sleep at night for this week. There ward brings in meals often and are helping the kids to maintain a fun and normal life through all of this. What a blessing to belong to such a great ward. We have also had wonderful family and long time friends who have brought meals to my parents and who have come and sat with Heather and helped my mom bathe her. Stephanie came and helped Scott all weekend. Heather loved having her there and it is nice that the two best friends got to have a little time together again. I was able to spend most of tuesday and wednesday with Heather and my parents. I can't lift Heather so I am not much help. I was singing primary songs with her yesterday when she totally freaked out and asked me to just stop singing. True testimony to what I already new, my voice is horrible and I will stick with my piano playing.

Advice needed

Well I am thinking it may be time to embark on that lengthy task of registering for baby stuff. Everytime I think of walking into babies r us I get a bit anxious. It is so big and there is so much stuff. I have researched products and have an idea of what I need, but being a first time mom I would really like your input. If you have any suggestions, recommendations or things not to waste my time with I would appreciate it. Just leave me a comment saying products you love, or must haves or do nots. Really any input would be wonderful.

Thanks!

Heather

Heather started with hospice care on Wednesday. On Monday Scott talked with the oncology staff and they said there was a slim to none chance the new chemo would work. They said wtihout chemo they thought 2-4 weeks left. This started the ball for hospice care. The next day she had a brain scan since she is having trouble hearing and she can't really see much anymore. The neurosurgeon said it looked ok that there was no reason for those sympotms. But we have had CT scans tell us things are ok before and the MRI showed things were bad. So I am not putting much stock in it. With her recent gamma knife surgery she will probably last longer cause the tumors that were causing a lot of the problems were treated. Heather was started on steroids to help with brain swelling and she has improved a little with that. Able to see a little now and more with it. She won't eat very much, just takes in fluids but that is better than nothing. She has lots of hallucinations and does not make sense a lot,but she has her moments where things make sense. While waiting for the CT scan on Tuesday she had not been with it all day. THen she tells my dad in the car that he has done all he can. I think that is what he needed to hear to let go.

On Wednesday Heather started throwing up again. Luckily it was the first day hospice was there and they were able to give her medicines that she could keep down and she got some rest. The ended up providing 24 hour care since this was a change in status. They won't be doing this until it gets closer to the end. For now they will just be coming by once a day until Heather deteriorates further. The nurse was asking my dad on wednesday night if Heather was his only child. HE told her he had 2 sons and 2 other daughters. Heather had supposedly been asleep or was just lying there silent with her eyes closed. Then she said I am so proud of Cherise. That makes life worth it right there! Nothing better than having your big sis proud of you. Last night Scott and my dad took Heather back out to her house. She has been asking to go back. The hospice has a hospital bed there for her, but Heather did not like that. She felt like she was trapped and in the hospital. Hopefully they will be ok with her being in her bed for now cause she is going to be really anxious if she is stuck in that bed.

Trip to the "cold room"

Ok, so my friends will appreciate this little story (especially you Sarah). My friends know that really random and crazy things happen to me a lot. I think they used to think I made this stuff up but then they experienced some of them with me and realized that these things just happen. So Monday I had one of those experiences and all I could keep thinking was, I have to tell Sarah this when I get home.. Monday was my first day back as a nurse. I have not been a bedside nurse in 18 months. I had to drive all the way up to HOllywood at the crack of dawn for this first day. I was orienting with somebody, but since I am an experienced nurse, I did everything and he taught me the new computer charting. I was to take care of a few week old baby boy who was going to be taken off life support. How great since I will be having my very own baby boy soon. The nurse I was with was a man who has a three week old little one at home too. We both just looked at each other and thought hope we can keep this together.

We took the baby off all the equipment and he went quickly (thank goodness). Then the nurse looks at me and says I have to do a bunch of paper work why don't you go clean up and prepare the body. OH THANKS! I bathed this sweet little boy and wrapped him up and since his parents left right away, I held him and rocked him and sang to him. (please note I would never sing to a living patient cause that would probably kill them). He needed to be loved. Usually parents stay forever, and I felt bad for him that he had nobody. Then the nurse walked in (keep in mind male nurse) and caught me singing and holding the dead baby. He had this freaked out look on his face. Great now at my new job I am going to be the dead baby cuddler/singer. Not how I planned on starting off.

Here is where the story gets good. At all my other jobs the morgue comes and picks up the patient. Oh not at this place. You have to take the body down. It took me forever to find the morgue. Turns out it is called the "cold room". Then I had to get let in by security. My friend brenda went with me. And the guard opened a door and said go on in and get a gurney. We just looked at each other. You mean we have to go in this big fridge? We walked in and there were bodies in there just lying on shelves, luckily bagged. But I almost lost my breakfast. We went back upstairs got the baby and headed back down. Next we had to put the baby in this big fridge. This took more time and I saw lots of yucky things and bumped into some things that I am not really sure what they were. The best was people just kept staring at me the whole way down to the morgue. Here was this pregnant lady pushing this big old thing around, totally lost. But everybody knew where I was trying to go by the big gurney I was pushing covered in sheets. Nobody would help me. I was all over that hospital just trying to get this horrible task over with. I called my dad and when he said how is work I replied, "You will never guess what I just had to do. This new job is nothing like I thought it would be." Over all it was a great first day, at least I had some good laughs out of it.

25 weeks

I have received multiple comments asking how I am doing, how the baby is and the pregnancy is going. Plus people want to know about all my doctor appointments. Well, everything is fine but changing docs and insurances during your pregnancy is not so smooth. I was told that on Aug 7th I would have my first OB appointment with an NP at Kaiser. Tristan and I show up and turns out it is only with a RN and she is just taking a history. this is standard protocol at Kaiser before you see and OB. They get all your history, date of last cycle, fam history and order a ton of labs. Did they not miss my belly when I came in, I am not here for my 6 week appointment. NOne the less I had to jump through the hoops. They ordered all the pregnancy labs again in case they don't get my records in time from my other OB. At that point I was 24 weeks and still had 16 weeks til I deliver so I don't know how long they thought it would take to get them. At the end of the appointment I told the nurse that I felt the baby move once or twice for about 3 days ina row at almost 22 weeks but nothing since then (now 24 weeks). I still am sleeping on my stomach so I was worried I had smashed the little guy. She talked to the NP and they did a quick ultra sound. i just wanted to hear the heart beat, but they insisted on the sonagram. LIke I was going to complain. My litte guy was sucking his thumb when we first saw him on the screen. They got him to move around and the NP kept saying don't you feel that? NO, I did not. He was moving around for 5 minutes and I felt nothing.

Now a week later, I am feeling him again and what a relief to know he is ok each time he kicks me. So they set up an appointment for me for Aug 11th to see an NP and so I can get a referral to a breast surgeon for my three new friends I made in June. I affectionately call them Lumpy, Bumpy, and Frumpy. Then Kaiser called that day of my appointment and cancelled. I luckily was able to get in yesterday (friday aug 14th) due to a cancellation. otherwise I was going to have to wait til the end of hte month. I had my 24 week checkup yesterday at 25 weeks and 1 day pregnant. I have gained 12 pounds. The baby had a really strong heart beat. The NP was really great. what a relief. I have my 28 week check up at the end of the month, at only 27 weeks cause the doctor will be gone for a couple weeks. I will due my glucose test then too. The NP wanted to do a special ultra sound ASAP so I should be hearing from Kaiser next week to set that up. My other doc wanted to wait til 30 weeks to see if my placenta had moved, but this lady said she is afraid I will start bleeding cause I work so much on my feet that she does not want to wait. She also said that they sometimes don't get the records and she would feel more comfortable knowing for herself what is going on.

The policy at Kaiser for placenta previa is a c section at 39 weeks unless you start to spot earlier. I am glad it will be at 39 weeks and not 37, gives me more time to get ready for the baby. She did say that if the cervix is less than 50% covered I can do a trial vaginal delivery and if I start to bleed they will wisk me away for an emergency c section cause both the baby and I could die. HELLO?? Do you really think after you just said that that I would want to even try it. UMMMM NO THANK YOU!. I don't want a trial delivery where I could bleed to death. So we will know in a couple of weeks what is the plan.

As for my three little friends who have taken up residency in my right chest.... I was to see a surgeon in July but she could never fit me in and my insurance ran out before I could get in. Now that I have changed insurance I am starting the whole process over again. At my appointment yesterday, I was telling the NP how my last doc could not feel them until I showed him where they were. She said oh yeah this big one up here. WHAT??? BIG ONE?? WHERE??? NO. I just have these three little ones down over here. Apparently she felt a very large one up towards my right arm pit. After she saw the freaked out look on my face (cause I was thinking cancer spreading to my lymh nodes) she said Oh I am sure it is just your mammary glands getting ready. SURE LADY! Thats what they told my sister, she was the same age as me and had just had a baby. They were sure it was just mastitis when Heather went in.

No, I don't think I have cancer and I am not going to worry until I know what it is. But I can tell with everything that has happened to Heather and how similar the situation is that I have one nervous husband and two very worried parents. I think they will just be benign tumors, as I have had one once before. I will be seeing a surgeon once they call me next week to set it all up. He will likely order an ultra sound and see what is going on. If they are tumors, and just not swollen glands or cysts, then I will have them biopsied and we will know exactly what is going on.

Please nobody worry about me until it is necessary. Right now I am enjoying being pregnant, feeling my little guy move and spending my time with my family.

more on heather (8/14/09)

I realized that since my blog does not put dates on things that I need to if I am going to use this as a journal. Well, lots has been happening and I should have been blogging about it all cause now I can't remmeber everything. I have been so busy finishing up my summer teaching job (YES!!!!) and starting my new job. I have had 4 weeks of over lap and I am exhausted.

Here is the summary on Heather since I can't remember it all. Heather decided she wanted to go to my parents house last weekend. She requires a lot of care and attention. She is in unbearable pain all over her body. Her bones hurt if you just touch her. She is also very anxious still and so she does not sleep. She has hallucinations and comes in and out of reality. So basically whoever is with her gets no rest cause she does not always sleep much at night and when she does it is for short periods of time. She needs lots of consoling and reorienting when she awakens. Last night I was in bed with her and she woke up thinking she was in the hospital. To give Scott a break my parents took her last friday, so a week ago. heather has wanted to stay there. Down fall is my parents are both really old and they need there rest. It is so hard to be up all night with Heather and then take care of the kids all day plus heather. My parents try and do shifts at night so they can each get a few hours of sleep. Lets just say when I say my parents the other day I thought when did they get this old. They aged like 5-7 years in 3 days. I told them I was going to come after them if they did not take her back home or if they don't get some nursing care to come help (preferably at night).

As for heather, last weekend she informed us what she wants at her funeral,that she bought a new temple dress and some other things. My siblings and I have been left some very sad messages in the middle of the night with Heather telling us she loves us in case she does not get to. But if you ask her about dying or what she wants. She still wants to fight. I am not sure if she is really in her right mind, but she told my dad she did not want the home nurses to come and see her cause all they do is talk to you about dying and she does not want to die. Watching her now is not really watching my sister. her personality is so different. It makes it easier to let her go, especially in such pain. I was hoping for hospice care. But this week the neurosurgeon said she has a tumor on her spine and that could be causing most of the pain. Or it can be from the cancer in her bone, but they don't know how in depth that is without a bone scan. So he suggested radiating the tumor to shrink it and help with her pain. She also was put on some new pain medicine which is helping a lot but not enough. Today my dad took her to her radiation appointment. They decided she was in too much pain and too anxious to lie for 3 hours while they did the treatment. But the radiologist did spend lots of time with my dad discussing everything. She wants a more in depth scan to look at all of Heather's bones closely as my dad kept saying the pain is really the worst in her hips and thighs. Finally maybe we can see what is really causing this pain. It is probably a combo of the spinal tumor and all the stuff in her bones. This doctor also gave some different pain meds and instructed my dad in depth on her pain regimen. Radiologists normally don't do all that so it was really nice to get that kind of attention.

What is this coming weeks plan? Tuesday go to oncologist if blood levels are ok then have first dose of new chemo. Thursday have another scan if pain in enough control that heather can lie still for it. Every time I think we are at an end point more stuff is in the works to get done. I am just along for the ride. whatever happens happens. My parents still think they can nurse her back to health. I am afraid they are going to die trying.

Latest on Heather

Writing this post is a tough one to swallow. I have not written about Heather like I should, but it is just too hard. On Monday night we went out for our anniversary. Tristan surprised me by taking me to dinner and to see My Sister's Keeper. Probably not the best choice when you have a sister with cancer who is not doing well. To top it off I spoke with my dad on the way to dinner and he told me about Heather's full body scan results. Not good. I knew we were loosing the battle once again. So of course in the movie I was the only one in the theater heaving and sobbing. I had to keep holding my breath so nobody would here me between sobs. Poor Tristan, probably not the anniversary he was hoping for.

So what are the results? Her full body scan showed the cancer has grown. She just had a CT scan a couple months ago where it had shrunked. The new chemo was working. Apparently not any more. I wanted more info. Is it growing rapidly in her bones? Is that why she is in so much pain? She was already scheduled to have this gamma knife procedure on wed (yesterday). So she went to her procedure where in order to start it they do an MRI to map out all the lesions and tumors they are going to laser off. Remember the Cat Scan she just had on MOnday July 27th? We were told in the Emergency room that it showed three tumors on the right had grown. The doc even said good news is nothing has re-accumulated where the old tumors were removed. Well, not the case afterall. Her MRI yesterday showed that the tumors had reaccumulated in the area where they were removed in February. The neuro surgeon did not know how Heather was able to walk with these tumors in there. He can't believe how aggressive her cancer is. The tumors have not been growing there since February if that was the case it wouldn't be so amazing. She had a MRI 6-7 weeks prior to this one and there were no tumors in that area where they had removed them and all others had shrunk. This was when they decided not to do the gamma knife procedure unless they start to grow. Well in only 6-7 weeks these tumors grew and grew big. Which explains the restart of the seizures.

They did the procedure,but did not even try to get all the tumors just the ones that are new or have grown. Why? Because trying to get all of them could result in the same problem we had in the hospital back in february when she had radiation. It creates so much inflammation and swelling in the brain when you laser, that you block the spinal fluid from flowing and draining. THen you get hydrocephalus and you start to herniate which is what she did before when we almost lost her. The doc said they could just do the procedure twice and get the other ones the second time.
Dr. Louden is so great. He is adding Heather in on his lunch hour on Monday to meet with her. He wants to review every single one of her scans and see how did this grow this fast. Her cancer baffles the best of them. He also wants to look at her full body scan himslef (he usually only just pays attention to the brain since he is a neuro surgeon) and see what is happening in her bones since she is in so much pain. Finally maybe we can get some straight answers about that.

Heather will also be starting a new chemo regimen since the body scan shows the cancer is growing once again. This happens with every chemo. It works for about 3 months. The first scan results are always good, it shrinks. then the chemo stops working or her body stops responding. Her cancer is so aggressive that it finds a way to outsmart the chemo and to keep growing. I fear that this pattern will continue with this new chemo. Everytime it works it is a new hope. We have more time, perhaps we can get this undercontrol. Maybe have a few more years. You forgot about how tenuous her life is, you are happy once again. Then it stops working and each time it is a bigger let down. You have to deal with it all again and accept that this could be the end all over again. It is such a roller coaster, I can not even imagine the emotions Heather must have through all these ups and downs. I have known since February that Heather will not live a long life but I hoped for a few more years with the wonderful progression she made this summer. Now I am back to thinking about that deadline of the end of this year, and wondering if we are all hoping for the wrong thing. I made peace a long time ago with whatever happens, but I have chosen to honor Heather's request to keep fighting.

I saw Heather at her home last night after they returned from the hospital. She is a bit out of it. But what do you expect when you have tumors taken off your brain with lasers. She gets agitated easily as she can't get comfortable due to the pain. That is really hard to watch cause she gets so upset. It has been like that for a couple weeks now. I will update you all on Monday after her doctors appointments. SHe will be seing the neurosurgeon and her oncologist.


Sorry this is so long but I use it as a journal so I don't have to write all this twice.

Happy Anniversary!

August 3rd is our big 2 year anniversary. Well I guess two whole years is not that big of a deal. But when I think of all the things we have done or been through in 2 years it is pretty amazing. Tristan is awesome. I am really blessed to have such a sweet husband who is so patient, understanding, and loving. I never have to wonder if he loves me. He is always telling me or showing me. He is helpful, making dinner if I can't, and he is the official dish washer, dish loader and dish unloader. He is so supportive too. We had so many people tell us that the first year or the first 3 years were learning periods full of adjustments, and struggles. I don't want to jinx myslef, but this marriage thing has been too easy. It is fun and wonderful. Tristan and I just gel so well that we never argue. Sure we have different opinions on things or like furniture in different places. BUt we just calmly discuss it and it never escalates into an arguement or disagreement. Its always akward when we are out with other married friends and they are bickering. So glad we don't have that problem.

The other night we were talking about everything that has happened in our 2 years of marriage. Here is what we came up with:
1. Got married in the temple
2. I could not find a nurse pracitioner job for a while after we were married, very stressful.
3. Tristan looses his job shortly after we were married.
4. I found a teaching job and nurse practitioner job. Both awesome!
5. Paid off my car.
6. Heather's cancer came back (poor Tristan was married to an emotional wreck).
7. Bought our house.
8. Tristan doing well in school, making dean's list twice.
9. Heather's cancer spread to her brain one year after it came back. (again emotional wreck)
10.Pregnant but told the baby was likely already dead. Turns out he is just a little guy and everything is ok.
11. Loosing my nurse practitioner job right after finding out I was pregnant. That was a 2 month ordeal of rumors and worrying.
12. Loosing my teaching job.
13. Diagnosed with placenta previa.
14. Found a job, not a great one but it's a job.
15. Tristan applying for grad school.
16. Found some lumps in my breast. Now I am going through the whole work up and since my insurance changed I have to start it all over again. Selfishly I hope my story ends differently than Heather's.
17. Paid off Tristan's car.
18. Two years of a happy marriage and the upcoming birth of our sweet baby boy.

I am really excited to see what this next year will bring. It will be so exciting with the baby coming and finding out where we will be going to grad school at. I am excited for our adventures together.

Here our some pictures from our Wedding day

Us leaving the wedding reception


Cutting the cake


My cute husband.


The flower girls


Our debut as husband and wife


a few funny pics