I'm Home

Discharge went as planned yesterday and I was home by late afternoon.  I am working with the visiting nurse to figure out a new schedule for the pain medicine and and figuring out how to get comfortable in my new bed.  I did have a good night last night which was my goal, so I'm happy about that.  I spent the evening visiting with family.

Happy Sad

I am happy to say that I am going home today baring any unforeseen circumstances that prevent me from being discharged around 1:00 PM today.  I can't wait to be home, even though I will not be sleeping in my own bed.  Hospice has delivered a bed for me.  Our plan is to have an honest talk with our children this weekend, or in the near future, and that will be the most difficult thing.  

On Wednesday they drained 2.5 liters and put in a semi permanent drain. Thursday I had the  Celiac Plexus Block procedure.  They do not use general anesthisa for either procedures so I was awake the whole time.   Both procedures were very painful, and I won't be doing that again.

The goal is to keep me comfortable, which doesn't sound like a bad one, does it?  I feel like my pain is under control, whether that is attributed to the drugs or the procedures, I will take it.

Update February 18th

Today at 5:00 I will have paracentesis, draining of the fluid, and they will put in a PleurX drain if they believe that will be helpful.  I am on the list for the Celiac Plexus Block tomorrow.  My pain has increased even with the increase in IV pain medication they have used to try to manage it.  I am hoping these procedures will help alleviate some of the pain.

It is very difficult for me to make blog entries between the pain, and the effects of the pain medication.  My mom will be helping me make the entries for now.  I am hopeful we will get the pain under control and I will be home by this weekend with my family.  Thank you for all your supportive messages on my blog, texts, and emails.  My mom reads them to me when I can't read them myself.

procedures and pain management

after being drained one since Ive been here, and it not being the most pleasant of experiences they were going to try to minimize the pain by the idea of my next drainage being involved with a semi permanent procedure where they would install a semi permanent drain to allow for me to drain myself when needed instead of coming to the  hospital every time for the procedure of being stuck with a needle.  

The other procedure they are considering is the Celiac Plexus Block.  It would block the nerve messages going into the liver.  Much of the pain I am experiencing is from referred pain from my liver to other parts of my body such as my back.  If I am a candidate for this procedure, it could reduce my pain and therefore I would be able to decrease the IV and oral pain medications that make me so  drowzy.  If I am a candidate, they will do this procedure on Wednesday.  

Over the past week while I have been here in the hospital I have met with the oncologist team on staff here, the trial team doctor and nurse, and the palliative care team.  The oncologists have offered treatment, it would be a combination of the two chemo treatments I have had in the past.  Because I have had such severe side effects to both treatments, they would expect me to be hospitalized for a week after each treatment.  They also admitted in my compromised condition, the treatment may do me more harm than good, and I may not get out of the hospital and come home again.  All of the medical team members involved support my decision to get the pain under control and go home and spend time with my family.  They all support that chemo is not the best option and to see if we can do the above procedures and make me comfortable at home.  The earliest I think I would be going home is Thursday best case scenario.

Thanks for all of your texts, emails, and support.  It means a great deal to me especially at this time.

I beleive in you, Leah

Hi Everyone,

I'm Leah's friend Kim. I don’t mean to take away from Leah’s post below (please read that first), but I need to advocate for her while she’s processing this difficult news and going through so much. She needs an outpouring of love and support right now, and I know it will mean so much to her if you are able to show your support in a way that you feel comfortable.

I think it takes a lot of guts for Leah to write personal news and emotions so publicly on this blog for all to read. I couldn’t do that – even commenting a sentence or two on her blog so publicly can be difficult, as I know it is for some. So I got permission to share her email address: leahinnewport@hotmail.com and mailing address: 151 Carriage Drive, Portsmouth, RI 02871

If you find it on your heart to reach out to her, I hope you do in some way. Whenever you feel that pull is the right time. Though she will be able to read everything that is sent to her, she will almost certainly be unable to respond because she will be heavily medicated and cannot focus to write (writing her blog post was extremely difficult for this reason). But please know that each sign of positive support will work it’s way to filling her heart and will be much appreciated.

So I’m going to take a page from Leah’s brave book and post part of an email I wrote to her 2 days ago:

There's nothing I can do to change the news, but I want to remind you of my support and love for you.
I don't ever want you to feel despair, so that's why I want to write you and tell you wonderful things because you are wonderful and deserve to hear and feel lots and lots of good things.

You are an amazing person. You have a positive effect on anyone you meet. Sharing your story has touched so many people - I know you know this.
I can't hear the word "grace" and not think of you. You are the most thoughtful person I've ever met.
You are a fantastic mother. You are the best of best friends. I know from seeing the love in the eyes of those who love you that they got lucky because you are their daughter, sister, cousin, wife, etc.
 
It's not a coincidence that you are so remarkable at all these things. I think it's because you have a strong inner core. Perhaps another word for inner core is "soul". I'm sure you’ve had to call upon this inner strength many times during your life. I imagine through each hardship (though you may not have realized it) you built upon your inner core and made a strong foundation. This has made you the wonderful amazing person you are today. I think people see this shining through and can't help but admire.
I want you to know I am one of the admirers and I believe in you. Let your soul guide you, because it is very wise and good.

heavy heart

I was admitted to Mass General Hospital Monday by ambulance, from Newport.  It was believed to be a heart attack of some sort, caused by the trial drugs, but that since has been all  resolved and they are back to focusing on the cancer.  Scans they did focusing on the mild heart attach revealed significat growth in my liver which is very enlarged and increased tumors growth, and is causing me a great deal of pain.  They finally drarined off 1 liter of fluid from my adomen which did not prove to be of much increased comfort.

This is all after spending 24 hours in the ER at Mass General, before being admitted to a very nice room.  At this point I still need to have one more meeting with my oncologist but it is my understanding, that I have very limited options.  I have been kicked off the trial due to the tumors growth.  Of course chemo always seems to be something they offer but nothing is changing, the fight is still the same.  The fight for me is to enjoy quality of life.

At this time they are working on pain management, as I am in a lot of pain.  I will not be released from the hospital until they believe my pain can be managed at home.  The goal at this time is to focus on being comfortable one day at a time.

Not doing good

Since I've been home from Tucson I haven't been feeling good.  I have a bloated belly which makes me think fluid although I don't have those symptoms but I'm realizing perhaps the fluid is just located higher and therefore giving me different symptoms like pressure on my chest and back to the point where I can't lay down or sleep.  It doesn't go away when I'm standing it's just worse laying down.

I have my treatment Wednesday but would like to see someone before then.

Sun finally

They had some unusual weather here in Tucson, it rained for 2 days but now the sun is out!  I need to be careful of my rash on my face being exposed but plan to spend some time in the sun.  I hadn't felt very good the past couple of days but I'm hoping that's behind me and I'm just glad I'm not in the snow storm they are getting back in RI!