Thursday, September 1, 2011

Yes, another quick update

Dear friends,

I wanted to follow up yesterday's post with another quick update.  After consulting with the surgeon about the J tube (feeding tube surgically attached to the lower intestine) we decided that I wasn't ready for this procedure yet.  We really got the impression from the surgeon that I wasn't at that nutritionally needy place yet and of course we didn't have to make decisions right away anyway.  The doctors all called this a minor surgical procedure, but it would still mean a 3-5 day stint in the hospital just for the surgery with a 6-8 time period of recovery and lifting limitations.  To me with no prior surgical experience anything seems major, plus fitting this type of surgery in between chemo treatments would be really tough and a delicate situation.  The procedure only addresses nutrition and has nothing to do with any future nausea and pain that is caused by my chemo and/or cancer so imagine heaving while trying to heal, plus skipping treatments for that long would be really tough and allow the cancer to spread.  Can you say caught between a rock and a hard place?

But for now, the good news is that I am feeling better and continue to feel better as time goes on.  I am keeping a larger proportion of my food down and if all goes well I should be home very soon which all leads you to the question of what happened?

Well, I've been thinking and contemplating what really happened to send me to the hospital again.  I try so hard to maintain at home and I don't like to have to visit the ER to get myself taken care of, but I think I've come to the realization now that I do what I have to do.  It basically comes down to the point where I can't maintain myself anymore or feel like things are out of control.

Last time it was mostly about dehydration and it was a quick visit.  This time it was like a double bonus round.  I think in general, I tend to be dehydrated, I had been consistently nauseated, and I had consistently been in pain.  Putting all those three together, I couldn't maintain any of those by myself and felt overwhelmed.

The other thing I've been thinking about is how all that makes me feel.  Of course I believe its human nature to feel low when we are low and high when we are high... seems simple doesn't it?  It's amazing how grim the future looked when I felt so poorly and yet how hopeful it seems when I feel better.  I remind myself of a yo-yo going from one extreme to the other...  I keep telling myself that I need to remember that so far things do get better and that sometimes it does take longer or even seems like it won't get better at all, but it will.

Thankfully, I have all of you to help me remember, but it is truly hard to feel it in the moment.  One of my friends again reminded me of something we all know... the circle of life... the yin and the yang...

I'm grateful to be feeling better, grateful to be able to go home soon,  grateful for my family and friends, sad to know that I will indeed go through this cycle again and again, and yet grateful to realize that I'm still here.

I also believe we will be looking into some details of hospice care that might help me transition from these swings of feeling so poorly to the times where I do and can maintain and feel better.  Some home care might make things easier for us... I know nothing about hospice other than the care that is given to people at the end of their lives to make them comfortable.  Apparently, hospice is more than that and we will be education ourselves a bit more very soon.

So, my short update turned into a short novel.... thanks for staying up with me.

Until next time.

-Katie

31 comments:

Joan B said...

So glad to see you feeling better and I hope hope hope you get better pain management. constant pain and nausea = misery for anyone. I say take advantage of whatever is out there to help! Hugs.

Robyn said...

Hi Katie! I always look forward to seeing that you have updated your blog. I'm sad if you are feeling bad and happy if you are feeling better. Please know that I often think about you and pray for you even though I live so far away! Hugs Robyn

Gina said...

Glad to hear you sounding more energetic Katie :) I think the hospice thing your talking about sounds like a good idea. I'm guessing it's what we know as Respite care, where people with long term illness/disability go for short breaks to give their families time to do more regular stuff, and are specially adapted to help the guests learn more about their own needs during their illness. It could help with getting stuff straight inside your head(where you do all your worrying), and teach you ways to cope better with the nausia. Lots of love and hugs :D XXX

Margie H said...

See, you are educating me - I didn't know about that part of Hospice care. I hope it's a good option to relieve you of some worries you are carrying. Know that your friends are with you in every step. Healing prayers from this friend in Chicago! xo

~amy~ said...

Glad that you are feeling better and the hospice sounds good...help is always good. hang in there...thinking of you.

Karin said...

So glad that you will be going home soon...Know that you are being prayed for and I cannot say enough good things about Hospice care. They provide great support in so many ways, for you and your family. Cheers for many more happy days!

Bobbi-Lynn said...

I am glad you are feeling better. Hospice may be a really good idea, to help relieve you all of some things that you could use help with. As always, still praying.

Dinahsoar said...

It's hard to eat when you are in pain and feel sick to your stomach. So controlling the pain and nausea is important. Are there any meds that will help with this? And--you might consider medical marijuana if is is offered. I don't drink, hate recreational drug use, but for medical use to me a drug is a drug. I understand it relieves the pain and gives a person an appetite. And there is some evidence that it causes cancer cells to commit suicide, though I'm not sure if it's only one kind of cancer or multiple kinds.

Too--when it comes to pain, fear can cause it to continue. My first year with cancer I hurt my back...and I stayed in pain for months because I was in fear of a metastasis to my spine. My doctor sent me for scans/tests. The minute the radiologist told me he saw no cancer in my spine by pain disappeared. It was then I realized that fear can fuel pain. And I had no pain in my spine after that because of my change in thinking. Told that there was no cancer in my spine the pain disappeared immediately.

It would be natural for you to imagine the worst with your tumor makers rising. And that might contribute to the pain and nausea. Getting relief from the pain and nausea may help in multiple ways.

gramma jacki said...

so happy you are feeling better - you "sound" so much better, too! hope you're home soon and continue to feel better each day. {{{hugs}}}

LaurieJ said...

I am SO happy to hear that you are feeling better, Katie, and that I can hear hope in your voice again. Have you thought about reaching out to a therapist that could help you during the "down" periods? It might be helpful.
I continue to keep you in my thoughts and prayers. Hugs, Laurie

mosaic1 said...

Katie,
Here's another "you don't know me, but" post! My father had hospice care for several (3-4) years. It is absolutely wonderful. They came by once a week to check his vitals and see how he was doing. They were on call for us 24hours a day, handled med orders and so forth with his physician, provided more services than you can possibly image, including the respice care that someone else mentioned, where u can enter hospice house for 3 or 4 days to give everyone a break and then return home. They will send a trained volunteer too sit with you and talk with you if you're low. They celebrate your highs with you. I simply cannot say enough about how wonderful they are, and it is a shame that people don't realize that they are not just end of life care.
Girl........jump on it! If you don't like it, you can drop it. They will customize your care to suit you, YOU are their concern. It just doesn't get any better than that!
Praying for you constantly...hugs.
Mary Samson

Shazza said...

glad you are feeling a bit better x

Whimcees said...

Hi Katie!

Mary Samson said it all - hospice would be such a wonderful support system for you and your family!

I a so happy that you are feeling better and it is always good to hear your strength returning. You stay strong! Sending love and prayers that you continue to have a good weekend and are home soon!

Hugs,

Barbara Diane

Susan said...

Thank you, once again, for sharing your feelings about your journey with us. You are helping to educate us, even though each person's journey is different. I am continually amazed at your ability to bounce back and see the positive, the hope. May God continue to bless you with good days and good friends. Hugs, Sue.

Chef Mama Lori said...

Glad you are starting to feel better. Hope you can get some good in home care to help you stay feeling better!

judy said...

So glad you are feeling better, Katie! It is difficult to have hope
or to manage the day to day when you
feel poorly physically. I hope you
find the help/support that you need
to help make things a little easier.
Thinking of you!

IamDerby said...

Always happy to see when you are feeling better. As always, sending love and hugs.

scraphappy4067 said...

Hi Katie~

I haven't posted before, but have kept up on your posts...I wanted to let you know that your in my thoughts and prayers...

I also wanted to share with you that I have had a J tube myself...I have chronic pancreatitis...among other things...food and I don't always get along...my problems are totally different than yours...but wanted to let you know that the procedure to place the J tube wasn't too terrible...I did have to stay overnight in the hospital...and the pain was controlled before I left...I had the J tube for a year...I'm not going to lie...I hated it...but it did help with my pain issues...It was more bothersome than uncomfortable...I didn't have any pain from the tube being in place...

Hope that helps some!!

Hugs,
Kelly

Tameko said...

Glad that you are feeling better. Hope that you have a lovely weekend.
Prayers & Blessings, Tameko

Amanda R said...

Glad to hear you are feeling better but wanted to let you know that if hospice isn't an option, here in my neck of the woods you can't continue treatment for cancer and go to hospice although maybe it is different where you are, you can still have your doctor arrange for home care where the nurses come in to your home to check on you, could possibly give you IV hydration and perhaps help you manage your care at home more. I do this for a living and wish all the best for you.

Edith said...

Dear Katie, today I wrote you an email with this news and now I found the link. Dr. John Bell, at the Ottawa Hospital Research Institute is working on this. Please do not think I want to intrude on your life, but I desperately wanted something to help and I would feel bad if I do not tell you about this, just in case you still do not know it. Who knows if there is an answer for you here. This is only my desire to help. I continue praying for you and your family...

http://www.nature.com/nature/journal/v477/n7362/full/nature10358.html

Kathy Mc said...

Dehydration, nausea and pain are three very worrisome issues. How is one to relax, right? Too much going on in your body and your mind. Hopefully, you will go home this weekend to spend time with your family. You are one amazing woman, Katie. Not sure I'd even be able to maintain a blog dealing with all you have on your plate right now. Appreciate your blog postings so we know what's happening. Wishing you the best and sending more prayers your way!

Susie said...

Katie, I'm soooo glad that you're feeling better! Your post has brightened my day :)
I'm familiar with both hospice and respite care. I know that most of us want to "handle things" on our own. But there are professionals available to us, that can provide so much care and advice. I'm so glad that someone finally provided you with this information.
Sending you hugs, and prayers from Illinois!

Linda said...

Katie, I am trying to catch up since out of power almost a week (thank you hurricane Irene), and am so sorry to hear the hard time you have been through physically and emotionally.
Home care is a wonderful idea, until my injury I did home care/hospice nursing. They can provide support on every level for the whole family. it can be so very helpful to have an unbiased person to share all your thoughts and fears with. We, your groupies here, are too close to be unbiased, I am thinking!
Please know that love and prayers for you are never far from my heart, and I pray you will find strength in body and in spirit to
have some very good days ahead.. soon. with love, Linda

Suzi said...

Sending virtual hugz and real-time prayers!

Emily Painter-Davis said...

Praying for you and so happy to hear cheer in your "voice".
I agree - medical marijuana might be the key. I hear it helps with nausea, etc.
Honestly Katie - none of us thinks we are ever going to have to use something like that. But if it will help you mama - GETCHA SOME!

love from Texas...

Beth Clark said...

Katie, I've been following your blog for a long time now but have not left a comment before. I am a fellow stamper and scrapbooker as well as a cancer survivor. I am also a registered nurse certified in hospice and palliative care. For some time now I have wanted to suggest hospice services to you. I have hesitated because many people associate hospice care with giving up and I didn't want you to think that I was suggesting that. Hospice care is not about giving up, it is about getting help for not only you but for your entire family. I think you will be pleased with the many benefits that hospice care can offer you.

Anonymous said...

Katie, I think of you daily and pray for you as I think of you. I look so forward to hearing how you are doing.Take advantage of any help that you can get- whether respite care in your home -or hospice care off and on - or medicinal marijauna - whatever works for you and yours, that is what matters.

much love- Deborah F

kathlee said...

Hospice excels in pain management Katie. Use every resource you can find. The American Cancer Society is also a good referral resource should you need it.
You are such an inspiration Katie,and so strong,
In my thoughts and prayers,
Kathie

Ted said...

Katie, I want you to know that I haven't forgotten you in my prayers and I won't.

Your updates always touch me (either positively or negatively) and I wouldn't have it any other way.

Easy for me to say...but remain strong. You are truly an inspiration!

Linda said...

Chocolate! That is the solution. Scientists need to make something that taste like chocolate, feels like chocolate, smells like chocolate and will put the perfect balance in our lives weight vs. health. What a wonderful discovery that would be. But we have to get real here. Drink your water Katie girl and let the Hospice workers do their job and take care of you. Hugs, prayers and smiles for you.

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