Home Hospice

Bear with me.  I’ve just started getting used to how morphine affects me so this post will probably be a disaster. Hopefully I can at least cover the most important things I have to say.  

Me,  brother Ryan, my dad, my mom, and my grandmother, all went downtown to the cancer center yesterday to find out what my doctors saw on my CT scan from Tuesday. Because I have been feeling worse and worse, I was expecting bad news. The news was worse than I was prepared for though. Dr. Gore said the Avastin did not seem to be helping at all as the cancer was growing and spreading at the same rapid rate that it was without Avastin. I guess most of what he said was a blur to me. He and Dr. Barnes agree that at this point that any steps they try to take to control my cancer would be futile. I asked him the question that had been at the back of my mind but that I also felt was something that simply had to work out in my favor: “Will I still be alive and functioning reasonably at Christmas time?” But sadly he responded with, “No.” I had to give up on studying abroad. Then I had to give up on taking a shorter trip to Vegas. And now the newest thing I had chosen to focus my positive energy on (having a fantastic Christmas with my family) had to blow up in my face like an overly filled balloon. 

This is Mary’s mom taking over. She is feeling terrible right now.   

When we were at the doctor’s office yesterday they tapped her belly and removed 3+ liters of ascites (fluid).  That procedure made her feel more comfortable to some degree, but did nothing to help with the pain.  While the procedure was being performed, Dr. Gore’s office was setting up plans for Mary to have home Hospice care immediately. 

The goal of hospice is to make Mary as comfortable and as pain free as possible.  We are using Hope Hospice and they have been wonderful so far.  They called before we left the hospital to make plans to deliver a hospital bed last night.  Mary could not sleep in a bed flat with fluids pressing on her lungs.  A hospice nurse came to the house to assess her pain needs.  She gave Mary oral morphine in incremental doses until a level was reached to hopefully help her sleep more comfortably through the night.  So, the hospital bed and oxygen and other durable medical equipment was all delivered and set up last night, and Mary sleep better than she has in several weeks, although she did wake up several times to take more morphine.

Today hospice came out to set her up on a Morphine pump so she can administer her own morphine as needed with the push of a button.  This provides a steady stream of morphine to better control the pain.  Of course it will not allow her to receive more than a preset dose.  

Mary has eaten very little today, and did not keep all of it down.

We have decided to have an early Christmas because it is so important to Mary and us to enjoy our time together.   Her brother and John are out buying a Christmas tree as I am writing this entry.

Words can’t describe how difficult it is to see Mary going through this agony.  She continues to be unbelievably brave.  I really want to say more, but my way of expressing the way I feel seems to only come out in uncontrollable sobs.  (Reminding myself to be brave for her though).  Mary is my precious, beautiful, brilliant, funny and tough as nails little girl (and she always will be my little girl).   

Please, please keep her in your thoughts and prayers.  Thank you for all the notes and encouragement you’ve written throughout her blog.  They have meant so much to Mary and to her family.

Mary’s mom, Beth

Party Pics

It’s getting more and more difficult to post here. I feel tired most of the time but I think it has a lot to do with the pain medication. So it’s a sort of groggy, doped up kind of tired. I also keep waking up over and over in the middle of the night because I get sick or have a lot of pain. I can’t remember the last night I had a good night’s sleep. 

It seemed unfortunately but obvious that a trip to Vegas would be a terrible idea, so we were able to get my brother Ryan, the Marine, home through the Red Cross. My youngest brother Jake is trying to get back here as soon as he can so we can all spend time together. For now, being at home and able to rest as much as I need to, but still getting to see my family, seems much better than going off to Vegas. 

Tomorrow I go over the results of yesterday’s CT scan with Dr. Gore. I’m not sure what to expect but it’s difficult to be optimistic as I seem to keep feeling worse and worse. I like Dr. Gore but of the doctors I’ve talked to, he the most difficult to listen to when trying to pick out the important facts. He tends to get off track in his speech and will start to tell analogies that I sometimes feel down play the seriousness of my situation. I catch myself zoning out accidentally when he goes off track and then I refocus to realize I probably missed something important. Also, of the doctors I’ve seem, Dr. Gore seems to be the most obviously hopeless about my case. I don’t think there is any way for the doctors to know for sure if it is hopeless or not but it all seems to be one big guessing game at this point. It’s nice when the other doctors balance out Dr. Gore by presenting plans without adding that nothing is going to ultimately work for me.  It might sound strange or silly, but if it’s the absolute most I can hope for, I hope to feel decent and coherent during Christmas time. I’ve already been making a big deal about it and all the family will get together again then, so I really want it to be a special, happy time. 

I don’t know how much more I can muster up to write so I will say that I had a really good time at the party my friends Jessica and Allison threw for me on Monday. These are my favorite picture from the party:

My brother Ryan, my dad, me, and my mom

Clockwise (starting with Stacy in the hat): Stacy, Ashley, Nick, me, Jessica, Allison with her baby Stella, Zack, and Pam

Hospital Stay

This is Mary’s mom Beth again. She hasn’t felt up to writing so she asked me to write a bit here again. 

Dr. Barnes said to call him if Mary was having a lot of trouble with nausea and vomiting, and Thursday morning Mary was in a lot of pain and couldn't stop dry heaving (there was nothing on her stomach.) She was admitted to the hospital that same day.  To manage the pain, Mary was already wearing Fentanyl patches, and was taking Lortabs.  A strong IV pain med was added through her IV; a med that seemed to kick in immediately, but wear off quickly too. The steady stream of pain meds seemed to ease her pain some. 

Mary had an x-ray the night she was admitted. This showed did that she was really constipated in her small intestines.  After dosing out laxatives over a 24 hour period with no movement, Dr. Barnes told us he was planning to keep her until her system kicked in with the goal being to make Mary more comfortable.  However, he told her this on Saturday, the same day her brother was flying in from California after a call to the Red Cross (protocol because he's a Marine) and she really wanted to go home.  Mary begged to be released from the hospital, so Dr. Barnes let us go home. 

While she was thrilled to see Ryan after leaving the hospital, she felt miserable all day Sunday.  Dr. Barnes called in a stronger laxative and she feels better today (after being up all night sick).  Today she's been dehydrated and tired, but her sweet brother went to get her some Pedialyte (which he told us the Marine often drink when they are dehydrated)-- and that seems to help.

Her friends Jessica and Allison are throwing a party for Mary today. "Eat, Drink and See Mary.”  Mary's just so happy she is now feeling well enough to go. Ryan, her dad and I are all going with her.  We'll take lots of photos.

I'm sure Mary will be updating soon. Tomorrow she goes in for the CT scan that will show the doctors whether or not the Avastin in working.

Thank you for your continued thoughts, support and prayers.

This is Mary's mom.

Mary really wanted to post an update today but is feeling too drowsy so she asked me to write a few words.

Yesterday I woke up early to find Mary sick and in a lot of pain. She had not slept well either.  I was really concerned when she asked me to stay home from work because she just does not ask that.  Of course I stayed home and called Dr. Barnes’ office about the pain waking Mary up during the night even though he had just upped her lortab dose.  

Since we had to leave a message with the doctor’s office, and she was feeling a bit better, we made plans to go vote and get something to eat.  On the way, Dr. Barnes office called and wanted Mary to come to the hospital right away for a CT scan.  Dr. Barnes thought all the pain might be caused by a small bowel perforation.  We were at the hospital most of the day. 

After lots of waiting for the CT Scan to be read and to talk with Dr. Gore, we found that there was no indication of a perforation. Dr. Gore had two radiologists look at the scan and one thought cancer was progressing and one did not. However, since the scan was done without a contrast, it was hard to determine any solid information about the progression or lack of.  Mary will receive a CT with contrast next week. In order to ease her pain and help her sleep through the night, Dr. Gore wrote a prescription for a duragesic pain patch. The goal is for it to deliver a more steady release of pain medicine.  Dr. Gore said it would take a while to kick in but hopefully will help her sleep through the night when it does. Each patch stays on for 72 hours before changing to a new patch.  She will continue with her Lortabs as needed.

Despite all this Mary is in good spirits.  A family friend from when I was growing up arranged for her to take painting lessons, and her first session is tentatively set for next Wednesday.  Mary is really excited and taken aback by the generous gesture.   

Mary also called me earlier today because she was very happy with her choice to buy a massage for 60% off from livingsocial.com for Studio Red Organic Salon. She had never had a professional massage before today and was very impressed with her massage therapist, Daniel. He recommended a neuromuscular massage and Mary said she left feeling so relaxed, rejuvenated, and free of tension in her neck, shoulders, and back that she wants to sign up for a monthly program for the massage.  I’m thrilled to see her pamper herself a bit.  Hopefully she’ll go back for massages.  The therapist actually provides some volunteer services to cancer patients. I didn’t get the details, but it was nice to hear.

Now she is just exhausted probably from a combination not being able to sleep well for the past few nights, the new pain patch kicking in, and just the emotional roller coaster ride that she’s been on since January. 

If there were a way to communicate her bravery and amazing focus and wisdom, I would attempt it.   Words fail me here.  She keeps me going and she continues to think of others throughout this whole process.  I could not be more proud of Mary.  Please keep her in your constant thoughts and prayers..

God bless you for your encouragement and support of her through her blog.

Beth, Mary’s mom

Trying to be Brave

I had my third Avastin treatment on Thursday. It only took about 30 minutes, which is so much faster than chemo was. I was a little surprised that Dr. Gore wanted to talk to me, my mom, and my dad in a private room before I got my treatment. It sort of gives me a knot in my stomach to know I will be talking to Dr. Gore lately because he seems to be all doom and gloom, though really I do appreciate his brutal honesty. All the doctors (Gore, Barnes, and Huh) seem to be thinking that the Avastin might not be working, possibly because of the increasing pain and continued fluid buildup in my belly. They all have told me to go ahead and get this third treatment though to really gauge whether or not it is making a difference. I’m scheduled to come back to the hospital on the 13^th for a CT scan and then again on the 15^th to check the status of the tumors with Dr. Gore. I told Dr. Gore that my dad and brothers are taking me to Las Vegas on the 19^th just so I could get out and have a bit of an adventure. He suggested tapping my abdomen to drain fluids again right before the trip, which I thought was a fantastic idea because that helps a lot with my nausea and comfort level (though not the pain). He also said if we find out the Avastin isn’t helping, he won’t start me on a new treatment right before I go to Vegas. I can start when I go back. His suggestion for that situation was to start taking the drug Etoposide (The “E” in BEP chemo) in pill form. I think he said the advantages of taking the pill version instead of an infusion were less side effects and being able to take it continuously instead of with breaks every few weeks. I mentioned to him that all 3 oncologists agree that I've run out of good options and I said, " It's difficult to choose between dying and going through some horrible treatment," and he corrected me by saying, "Well, at this point it's really a choice between dying and going through some horrible treatment and then dying." I don't want to die and I'm scared because the pain seems to be getting worse and worse. Lately I've been waking up in the middle of the night in pain. There is nothing left to do though but wait and see, and try to be brave. If I don't have a lot of time left, I want to make the most of it. I've been desperately trying to find someone to give me art lessons but not one has called back yet. I'm also trying to make a big deal out of Christmas (yes, it's pretty early to start thinking of that). I've been trying to think of thoughtful gifts I could give to people (probably paintings) and I made Christmas cards to mail out with a picture of me and Emma on them. Sorry, I can't post the picture or it won't be a surprise at all for the people who get one. :-)

Different topic: Medicaid. When I applied for social security disability, I was more concerned about getting on some sort of government healthcare (Medicaid or Medicare) than the monthly income I would be sent because being sick with no health insurance is extremely expensive in the United States. It just seems obvious to me that a person applying for disability will probably really need health insurance. I only just found out last week that I do have Medicaid but not with full health coverage. I was put on "Plan 1st" which apparently only covers pap smears and birth control. I'm so frustrated because I was so sure that I would be fully covered somehow. I simply do not understand the system and why I can't be covered. My dad has to shell out almost $400 per month to keep me on COBRA so I can keep the insurance I had before. Amanda, who works at the cancer center and has been so helpful with all this confusing health insurance stuff, is trying to see if she can get the hospital's charity care program to cover these COBRA payments, but she said it is a long shot. She is also going to see if I can get all my medications through the hospital since I have to take so many now. People like her really make going through these shit times easier. My parents do not have a lot of money and I hate to think of them suffering financially because of my medical costs.

Big #3

Today I’m getting my 3^rd Avastin treatment. This is the treatment after which Dr. Gore and Dr. Barnes say they will be able to tell if the treatments are working well enough to continue. I called Dr. Barnes about my stabbing pains and vomiting on Tuesday, and he had me come in to the hospital for a paracentesis (the radiologist drained 2 liters of fluid from my belly). He said that these were all bad signs when it comes to whether or not the Avastin is working. The initial fluid that drained out of me looked like just blood, which concerned me a lot until Dr. Barnes told me that bloody fluid is normal while receiving Avastin treatments and it is good for the chemo sensitivity test that the fluid is so cellular. I’m just worried because it wasn’t long ok that I had random pain that I could tolerate, and now the stabbing pains are so frequent and agonizing that I can’t go without taking a pain pill anymore. 

Dr. Huh called yesterday to check in on me. I told him about the pains, the vomiting, and the paracentesis, and he felt the Avastin was probably not effective. He suggested that I go ahead and get my 3 treatment today, but if I’m not feeling better by the end of next week, I should consider other options. I said something to Dr. Huh that I also said to Dr. Barnes, but both times I felt like I didn’t articulate myself very well. I told them both that at this point, with all the information they’ve given me, I don’t feel very optimistic about my changes of living a lot longer so if there is any procedure or test that can be done to me that might increase knowledge of this rare type of cancer so that someone in the future doesn’t have to go through this same nightmare…. well, that would make me happy. Dr. Huh mentioned a trial at UAB but said I only had about a 10% chance of being accepted. I didn’t ask him any questions about the trial but I’m sure I’ll have a lot if we find out the Avastin.  I’m also going to change my will and fill out some paperwork saying I want my body to be donated to science after I am gone, even though I have no idea how useful it will be. 

I took two steps in creating a foundation/fund. I attempted to set up a web address (not very successful there) and I went to the post office to get a P.O. Box:

Mary Scott Foundation

P.O. Box 9

Margaret, AL 35112

This is not an official non-profit organization yet. My hope is that it can become a scholarship fund for students who survived cancer or students battling cancer, but I’m not there yet.