Angelrose's Journey

[debknight]

I would be cautious about drinking that water you mentioned. How old is it, how has it been stored, and how was it collected? You can always apply it to your body. In the Catholic religion we are "sprinkled" with holy water, as a blessing.

 

[Angelrose]

Thanks debknight. I am Catholic too. The water is in a small plastic container that is sealed. I feel safe drinking this miraculous water from Lourdes. It hasn't done me any harm so far. Hoping for a Miracle.

I went to the radiologist this morning. He did a short exam to see how I was healing so nothing internal. I am doing very well. He didn't know enough about my rare cancer so he contacted doctors in Houston who know about my cancer to see if radiation is feasible. He hadn't heard back from them by the time we left, but said he would call as soon as he heard. So I just have to rely on the immunotherapy to kill these other cancer cells in my lymph nodes.

Now while we were in the waiting room I was reading my Kindle while Kelly and Ryan were on the tv. I didn't notice it much until this boxing instructor came on and showed them some boxing moves to liven up their workouts. Then he took off his shirt. I said, "Oh I'll take one of those". The man next to me broke up completely and said I made his day. I turned to Karen and said, "I said that out loud, didn't I?" Yes Mom. I'm used to talking to my tv at home ALONE. LOL When the man's wife returned he told her and she broke up too and said I made her day too.

Karen took me to Olive Garden for lunch and Chuck met us there so he could take me home and Karen could get back to work. While we were there, the doctor called and told Karen that Houston had said it wasn't feasible without damage to my rectum. So that was the end of that.

Chuck drove me home and I got into my jammies and watched one show I had recorded, then turned on some music and fell asleep for two hours. I get so worked up going to these appointments that when I get home, I am completely exhausted.

I feel better now that I know. I had the feeling that it couldn't be done, but I was hoping. Well, there are new things being discovered every day. I'll keep up my spirits.

 

[minnie56]

Yes Angelrose! New treatments and trials every day ...sending lots of positive vibes and prayers.
Our immune system can be a force to be reckoned with .. and yours will have a hand up!
I’m glad you’ve lots of love and support and keep those good thoughts front and foremost.
Hugs ..

 

[Angelrose]

Thank you minnie56. If plain stubbornness helps in any way I am sure of remission! Karen asked my permission to tell the kids what is going on with me. I told her if she thinks they can handle it, then by all means. I know Jesse has been asking questions on why I have to go to the doctors so much. So when they think the time is right, the will sit both kids down and tell them. I don't think Zoey will understand much other than I get tired very easily and can't be going down the basement and sword fight anymore. Jesse is an old soul and I think he will understand and want to help me in any way. He is quite the little man lately.

 

[minniecarousel]

Ahhh...kids are pretty resilient. I see what you’re saying about their reactions. You know them & that seems like a logical response to your illness. I’m so glad you’re still planning on going to WDW in April with them.

 

[piglet50]

Your wonderful, positive attitude is so important. The children will see that and it will help them, too. Praying for healing and for a wonderful April trip for you all.

 

[Angelrose]

Oh yes I am really looking forward to Disney in April. I have never been there that time of year before. Karen, Zoey and I will have a girls only day and Jesse will have that day with his dad. Sounds like a fun time.

Thank you piglet50. I appreciate the prayers.

 

[hellokitty86]

I’ve been thinking of you, Angelrose! Sending all my love to you. Xoxo

 

[Angelrose]

Thank you hellokitty86. I do feel all the love and prayers everyone is sending. It helps keep my spirits up.

 

[snapppyd]

Hope you are doing well, I think about you even though I don't post often

 

[minnie56]

How are you doing Angelrose?

 

[Minnie&Nana]

Well, all caught up...no idea why the DIS no longer send some email notifications ...

It is going to be quite a year for you, Mary...two Disney trips to buffer all the other challenges. I keep thinking how so many friends kept telling me they were praying for me, sending positive thoughts, and much love ....when I had the uterine cancer surgery ...the cancer did invade the "lymph node space" (whatever that means). I just wanted you know that as I went through that difficult time, one day I realized that I felt I was in a sort of cocoon of love, prayer, and positive thoughts...it made me feel so much better emotionally ...I hope we can give that to you as well. Of course, we're sending LOADS of PD as well...now THAT is special!

I agree, your family is a Blessing...but remember... this because you are such a Blessings to them...and us!

Oh!! You are going to LOVE Disney in April!! Flower and Garden is one of my favorite times ...EPCOT is amazingly beautiful!!! Fingers crossed it will not be hot and humid like it was when I was there my first April visit...but the second time it was perfect weather! Looking forward to hearing your plans!

p.s. Lourdes was beautiful...the candlight processional so moving. I am thankful you have the Lourdes water. If you can get some Holy Water from church bless all the rooms in your house and especially your bedroom, bed, favorite chair etc. heck, old fashioned blessing can't hurt! When I was a nun we blessed everything!

 

[Angelrose]

Thank you snappyd. I am doing well and in good spirits. minnie56, I feel very well thanks. I am going for my first IV tomorrow after an appointment with the cancer doctor. He is a cutie also, so I don't mind seeing him. He is a bit of a downer sometimes, but I did ask the question and I sure didn't want him to lie to me. It's going to be an all day thing what with the early morning appointment with him and then the IV appointment in the afternoon. Then an hour while it goes into my veins. But Karen has said we would go to Cheese Cake Factory for an early dinner. Sounds good to me.

Minnie& Nana, thank you for the encouragement. I feel the same way. I have so many people here praying for me and friends of friends praying for me that I know I will be cured. It just can't happen any other way. My family is so supportive and makes me laugh so much. That is a great idea to get holy water from my church and bless the whole house with it. I am going to send away for more water from Lourdes. I hope it's my time for a miracle.

I can't wait to go to Disney. I had forgotten completely about the Flower and Garden Festival. That will be and added bonus. I think I remember someone saying they have a butterfly garden at Epcot. I will definitely want to see that.

 

[Grumpy's Gal]

The flower and garden festival is amazing. I’ve been twice and it’s just ...... no other word can describe it! AMAZING!

If they haven’t changed it since I saw it last, The butterfly pavilion is so cool. You can go inside and watch. Don’t be shocked when they land on you! I guarantee they can take your mind off anything.

April isn’t that far away!

 

[Angelrose]

Thanks Grumpy's Gal. I am really looking forward to see that butterfly pavilion.

I had my doctor's appointment early this morning. He told me what to look out for with the IV. They usually don't have any side effects the first couple of times but then sometimes you get a rash or the runs or vomiting. If any of those occur I'm to call the triage number immediately.

So after my exam, he looks to see what time he has me scheduled for the IV. UMMMMMMMM He forgot to schedule me! He apologized and said can you come back next Friday. Well, Karen told him she went to a lot of trouble to change her Friday off and couldn't change it back. So he asked one of the ladies in the front to see what she could do. Karen told her she would not have me mistreated this way and the lady told her not to worry, she would fix it. I only had to wait a few minutes and I was in the IV room. First the had a devil of a time getting a vein they could use. I did drink lots of water yesterday but I just have small veins. They finally found one they could use and started the saline to flush out. Then they order the therapy stuff from the pharmacy which they said is very expensive. And each time I come in I have to get permission from my insurance company. That was done, they hooked me up and it took about an hour a 15 minutes. Karen and I read or joked around.

The lady next to us was elderly and her son told us that her drug shrunk her tumor in a couple of weeks. Of course hers was a different kind of tumor than mine, but it gives me hope that mine will do the same. The lady next to her, told Karen that she was a very good daughter in law and that we laughed so much. Karen thanked her and said, if we are quiet, you know we are reading. When we stop we joke around and laugh. That's what we always do. LOL But that was sweet of the woman to tell Karen that.

We left and stopped at a diner to eat lunch. The cheesecake factory wasn't open for lunch and was way down the other way. The diner was very good. We had potato skins for appetizers and corned beef sandwiches with fries and cole slaw. The sandwiches were good, but for some odd reason they didn't toast the bread which became soggy. We just add the corned beef with our forks.

We also got Boston Cream pie to take home. When I got home I changed into my jammies and had that pie, watched one of the shows I had recorded and half of another before I went night night and slept for two hours.

I think eventually I will have to get a port so they don't have such a hard time finding a vein each time. I will get my first blood test in two weeks 3 days before I go back to the doctor. Hopefully it will show no damage.

 

[piglet50]

Way to go Karen! Mistakes happen but every effort should be made to fix them instead of assuming that patients can just "come back next Friday". Glad it could be worked out for you. Also glad that you have someone to go to these appointments with you. Praying for you.

 

[minniecarousel]

Glad you wee able to keep the appointment. Gotta get started!
Keep up the good fight!

 

[minnie56]

Thank god you have a strong advocate by your side , too easy to slip through the cracks in the medical system and she is not having any of that! Good for her , good for you.

Have a relaxing weekend while the medicine does it's job !
Keeping you in my thoughts and prayers

 

[AnnaS]

I also do not get email notifications - weird. Sometimes I do and sometimes I don't.

You are always in my thoughts Mary. I am glad you were able to keep your appointment. It happened to my sister too and boy was she annoyed. They also had a hard time with her veins. I think the port is the way to go.
Keeping you in my thoughts and prayers!!

 

[Angelrose]

Thank you piglet50. You don't mess with my Karen if you value your life. LOL

Thanks minniecarousel. I was glad to get it started. I guess I was thinking I would feel something when it went in but there was nothing to feel. Now I know what to expect.

Thank you minnie56. I'm afraid if it was up to me, I would just accept to come back next week. I'm not a fighter. I never have been. I just cry. Now that is so helpful. LOL

Thank you AnnaS. I appreciate the prayers. I think the port is in my future for sure. That will be kind of weird for me, but then everything this year has been weird.