Me and My Family

Me and My Family

19 April, 2014

Guest Post by Susan

I visited with Dani a few days ago and she asked me to do a guest post about our time together that day.  First, by way of minor introduction- Dani and I met about 10 or 11 years ago.  We served in young women's together and that is when we got to know each other.  Neither one of us grew up going to young women's so we just figured things out together.  I helped her with her wedding preparations and then she and John moved away to start their married life.  We were out of touch for a few years and then reconnected several years ago.  One thing we both have in common is that we are tell it like it is kind of girls and are not afraid to ask and answer the tough question that come up in our conversations:)

When I went to visit Dani she already had two visitors one of whom rubbed oils on her hands and feet hoping to provide her some relief- it was a very tender and sweet moment to watch.  After her other friends left we had our time to chat- and chat we did.  I saw a peace in her eyes and told her about my observations during this journey.  We don't see each other much so when we do any differences are so noticeable.  I've seen her as a fighter, I've seen her angry, I've seen her hopeful about different treatments, I've seen her feel guilty thinking she should be better or do better, and finally I've seen her at peaceful acceptance.

We talked about hope and how as people we tend to focus on the exception- the 1 or 2% that something works for and then if it doesn't happen to us we feel less than somehow.  How when we do this it robs us of hope, joy, and peace.  We talked about a healthy kind of hope that looks for the good during the journey.  I've seen her have both kinds and can assure you the second resonates in her whole being.

We talked about prayers and how we often are praying for the wrong thing- the miracle we think we want or should have and then when that isn't answered we ask why me, what did I do wrong?  We talked about the power of prayers of strength, prayers of comfort, prayers for understanding, prayers for peace-

We talked about miracles and how she has had so many by way of time to prepare, people met during the journey, a faith deeper than she expected, the uncertain knowledge of what really matters in this life, truly knowing how much she means to people, the gift of her family and the care they have given her- really it goes on and on.

I asked her if she was afraid- she answered honestly and said a little but not in an overwhelming or scary way.

It was hard for me to leave that day but I found comfort in what I saw in my friends eyes- a certain peace and love that left me knowing in my bones she is ready for whatever is to come- she is at peace with all of it and I cling to that- the peace that is there for all of us to have if only we open ourselves up to ask and receive it-

To close I will share her one request- that is that we- her friends and family do not forget about her husband,son, and daughter.  That when time is passing and we are all moving forward with life we will stop and make time for play dates, dinners, phone calls, and whatever else we are inspired to do. I assured her that we will:)

I love you- my sweet, funny, loud, and courageous friend!









25 March, 2014

In case you are wondering. (caution: contents may not be as happy as you want)

Caution: The contents of this post may not be as positive as you want.


I got back from Mexico in one piece and am home with my family and friends. A week after I got home, John returned from work on the slope. The week after that we had our fundraiser. I feel so blessed by all the friends, family and even strangers who helped by showing up, helping out, and donating. Everyone who was assigned specific jobs really did great!!!! I definitely was feeling the love for me and my family. We made somewhere between $6,000 and $8,500. Just for that night, not including donations given to go fund me account.
I did have a CT scan two weeks after returning and the results were that there was growth since the last scan. The Doc gave me his little lecture on what his suggestions are, assuring me, that as always I am the boss and if I choose to not go with Chemo it's up to me. We then talked about pain relief. I came home and started a new pain relief medicine and that hit me about a week later with bad stomach pains (constipation)…despite my best efforts to avoid this.
I returned today for a follow up and asked about more options for pain relief, ones that might not have side effects of more pain. He also talked about chemo again..I told him in no uncertain terms that if I tried it again at all it would only be the one that is my last resort. The Irinotecan I will NOT take again.
Ok, we got that settled.
In between all this, my mom spoke with a surgeon on the phone ( a friend of hers who was my stepdad's surgeon for years) and he told her that no one would touch the mass in my abdomen. Abdominal surgery is risky, and with the cancer in so many different places it just did not make sense to try and tackle only that. He also stated it wouldn't buy me any more time, and would probably shorten it. This is basically what my oncologist has said, but we wanted to hear it from the surgeon. Not a good prognosis.
Another thing my doc said today was that if I wasn't going to return for treatment then I should get Hospice on board to manage my pain. This way I wouldn't have to keep returning to the doc's office for bloodwork and checkups. He never gave me a timeline, but I don't need or want him to. I have my own impressions and inclinations.
I have been praying a lot lately to God and I think I am as much at peace as can be expected at this time. Even though I have no doubt it will be hard on my son, he seems to be coming to peace also. At least his prayers reflect that. I know this could change in a heartbeat, and it's a far cry from the actual event. At this point though, I am trying to teach him that we may want this or that, we may pray for this or that, but the bottom line is, it's all in God's hands and we want His will to be done. If that means taking me, then He will find a way for my son and rest of my family to carry on and move forward as time passes.
I have been trying to be as tasteful as possible,, without being too blunt…but the point I am trying to convey here is that, if the 11th hour miracle doesn't come, my belief is that I don't have a lot of time left here on this earth. This all leaves me feeling pressed for time to wrap up my loose ends.
One loose end, maybe not mine, but I have to share if you don't already know….my beautiful, precious, sweet, wonderful, loving, helpful daughter got married!!!!!! She tied that knot right up for me. lol And her husband is a wonderful, sweet, wonderful, loving, and helpful man. They are so happy together. They are so good for each other. I am so happy that she now has Timothy to help hold her up and share his strength with her when she will be needing it most. Not only that, but he will be able to be there for John and Damon as well. I pray the four of them will take turns buoying each other as the need arises.
Well, I have rambled long enough. Since I have always been so honest in my posts I felt it only fair to continue that honesty, even though it hurts and you may not want to read it. I love you all!!!!
Danielle

22 February, 2014

Home stretch

I am on the home stretch.
 I would be getting my "gripper" (the needle in my port with tube for infusions) out right now, but they talked me into one last infusion of Vit. C tonight. They wanted to do it in the morning, but I said no. Tonight or not at all. 
I did my last lymphatic massage therapy a bit ago. It was nice and warm. 
Now I just have today to get through. Lunch, maybe a shower, pack, sit outside if the sun comes out from behind the clouds, and then the last infusion tonight right after supper. 
I have to make sure my phone and Kindle are charged up for the trip. I have been reading so much, I have already charged my Kindle about 3 times. Maybe 4, I can't even remember anymore. 
I will see the Doc one last time in the morning, he will make sure the staff pack up my vaccines in dry ice and are ready for me. Then I take the Doc's shuttle service to the airport. Hopefully Sundays at the border, in the medical lane, are quick. 
I can't wait to get all checked in and settled at my gate so I can return to using my iPhone to talk to my family. And, of course I can't wait to board and begin my journey home. Tomorrow will probably be a long day for my family, taking care of business as usual, and then they won't even leave home until about 9:40pm to come get me. WE might get home by midnight. I think Monday will be a low key day. Maybe? I can hope.....? 
Well, I will catch up when I get settled at home. 
love and blessings, 
Danielle

19 February, 2014

Making sense.......or not!

One of each treatment left. Four nights on a bed that isn't mine. Four and a half days until I see my Littleman, my Kaili girl, and my mom. Will have to wait another week to see my John. I am so grateful for the time I have had here. I am grateful for the treatments that are available to me here. I am grateful that I have a loving Heavenly Father who has been with me through this whole time and is always with me. I am grateful for a family, and friends who support my decision to persue alternative treatments.  
For all these things I am grateful for, I still feel torn. I sometimes feel lost. Like I mentioned in my last post, I feel like a prisoner who got life without parole. 
Another way I can explain it is a sense of feeling torn. Torn between picking up and chugging forward like a train on the tracks, oblivious to the landscape being left behind. Pretending that life is normal and just living with what I have been given....which I KNOW we all make a choice to do or not do...live  with what we have been given. I won't ever "forget" I have cancer, but should I move forward like I have my whole life ahead of me? 
OR, should I just accept that I am very sick, chemo isn't working, my cancer is progressing and presume that God's will is for me to let go? Let nature take it's course? It would be so much easier of God could just tell me what His will for me is, so I can plan accordingly! lol I know that isn't how it works, but I can wish. 
Here is where the title comes in, am I making any sense at all? Or not? It makes sense to me. I always feel so clear about the feelings and thoughts that run through my mind and heart, but when I go to put them on the blog they sometimes don't come out the same. 
In the end I know I didn't come all the way here to come and and give up. I acknowledge that there are many people out there praying for me and my family. 
I just get scared sometimes because I know how fast things can go downhill. In the last year, three people I know and cared about, died from their cancer. I fear getting sick with something else that could drag me down, something I would have trouble coming back from. 
So in the end, I will come home, do my best to keep a positive attitude, keep moving forward, and continue to do what I can to fight this. I will continue making memories with my family, and for my son. 
In the mean time, I appreciate your constant prayers and positive thoughts. 
love, 
Danielle

16 February, 2014

Life, with no parole

I have been mulling over this entry for a few days. I wasn't sure what I wanted to say, or if I wanted to say it. 
Here goes. 
I feel like a prisoner. 
A psychological prisoner. 
My psyche is dependent on the warden. 
LEt me explain;
The warden is my Doctor(s), and I feel that my psychological wellbeing is dependent on news they give me. If it's good news, I feel more hopeful, more happy, more optimistic. If it's not so great news I feel less of all of those, and more like a prisoner. A prisoner of them, and of this cancer. 
My Doc down here felt my tummy the other day and said it was his opinion that the "mass" in my abdomen was a bit bigger. Well, I took it hard. That day I spent all day in my room. I read, rested, read, and watched T.V. 
That night I didn't sleep well at all. I tossed and turned and my back muscles started hurting really bad. From around my right shoulder blade all the way up to my neck was screaming. Then I got a headache. During the next day it got worse. Pain meds didn't really help a lot. Then the nurse rubbed some stuff on my back like icy hot, and gave me a tylenol. At about 10pm he came in and gave me something he said would help me sleep and was for pain too. At midnight I was still awake. 
But let me back up here a moment to the morning...I was feeling so lousy about what the Doctor had told me, I was weepy and in total honesty, I thought maybe it's time to give up my fight so that my dear, sweet son can go on with his life. He can stop having to feel worried and afraid every day about when his mom might die. He could just grieve and move forward. 
I confessed these feelings to my husband and my mom and cried a little. Then my headache grew because I really had a lot more crying to do, but I hold back here because there are always people knocking on my door. I don't want them to walk in on my weak self crying. 
I spent a little time outside and it didn't do much to help my psyche. 
Anyway, I will still awake at midnight. Then at some point fell asleep for a few hours at a time, till I finally made it through the night. 
Awake at 6 a.m. My back is a little better, but my whole neck hurts! Just so much tension I think. 
Maybe this week I will start to find my old "strong" self as I look forward to coming home soon and holding my kids, and crawling into my own bed. Seeing my mom and getting a nice, strong, loving hug from her. Unfortunately I will still have a week before seeing my John as he will have left for work already. 
I have plans to follow up with my oncologist when I get home to request a PET scan to determine exactly what is going on with this "mass" in my abdomen. I also have plans to follow up with my naturopathic doc to come up with a maintenance plan. And I will still have 6 months worth of "my" vaccine to take. 
Today I will look forward with more strength and try not to feel like such a prisoner. A prisoner with a life sentence. If I think about it, that's how my son could feel too. Not that he knows what a prisoner with a life sentence is, but he probably feels trapped in his fear with no way out. It's like a life sentence, without hope of parole. I know it doesn't have to be, or feel that way. My faith can make me stronger. Faith can help my family and my son get through this, moving forward every day...with or without me. 
Today I pray for all who feel the way I do, that they might find their "parole" and be released from feeling like a prisoner. 
Danielle

11 February, 2014

More than half....

Hi all!
I haven't written in a few days. I couldn't think of what to say. I had a few days of feeling pretty down. This past Sunday was my halfway mark for being here at the clinic, though today is 2 weeks until I come home.
I thought getting half through would feel wonderful, but I just didn't get that feeling. I have been the only patient here the whole time and spend most of every day in my room. Alone, with two beds, four pillows, a TV where I can occasionally find something in English, my Kindle, some crocheting, and every meal is brought to me here.
Some days the treatments take longer so I am out of my room longer, but the only other thing that gets my out of my room is the sun.
The first week I was REALLY homesick, and the second week I was really homesick, and feeling like maybe I made a bad choice coming here. I was feeling afraid that I made this huge choice to spend a month away from my family and what if it wasn't helpful anyway? Then I have just spent too much time away, when I could be spending it with my family. I just couldn't write when I was immersed in those feelings. I had to get a handle on them first. I wasn't even sure I wanted to share them with anyone, but here you are. It's all out there. The truth only.
I can't really say if I am feeling better or not. I haven't gotten any exercise, until today when I actually walked 20 minutes on their treadmill. It's hard, being cooped up in the room.
I pray every day, most of the day for Heavenly Father to work miracles with these treatments! All things are possible. I just pray He has a purpose for me to stay on this earth longer. With the end of tomorrow, this third week will be half over for me....and maybe then I will start to cheer up. I know it's important to keep positive as much as possible, it's just so hard when  you are homesick, lonely, bored, etc...
Here are a few pictures.
getting Hyperthermia

Getting ready, see I am still smiling...lol now imagine laying under all that for hours, sweating!


2010 Spa, Heat therapy/Lymphatic massage, table vibrates gently and it gets warm, not hot, warm.                                

Like this! It's usually very relaxing. (1hour)