Saturday, January 3, 2009

April

From Tim, her beloved, as she was mine

I am making a decision on Cathy's behalf that I believe she would make herself if she were here to make it.
I am removing her last post, which concerned our daughter April.
April and Cathy have had their fair share of difficulties throughout this journey, maybe more than their share.
There are a myriad of reasons behind these troubles. April has certainly battled many personal demons in recent years, and some of the scars from those battles still surface occasionally. And some of Cathy's own struggles are well documented right here on this blog.
There is no denying that they both have always been very quick to voice their opinions, often without thinking as long as one might wish beforehand.
There is also no denying that the bond between them is strong. Strong enough to have survived any attempt to disolve it, no matter how hard they sometimes tried. Cathy herself actually defended April's actions, even as she felt the hurt they caused, by writing that she believed these actions were a sub-conscious self defense to make the inevitable loss of the one person who has always believed in her easier to bear.
Cathy's last post was a response to a letter she recieved from April. She wrote the response here because she knew how much I hated the conflicts between them, and almost always tried to keep me out of them, but needed to vent her frustration somewhere.
Cathy had no way of knowing that that post would be her last one on this blog, and I believe she would not have wanted it to remain, especially after the beautiful way that they ended their time together in this physical world. Just as with my beloved and me, I know that the seperation is only here in this world. The bond will always exist. I, along with April, Timmy, and Taylor, and our grandchildren as well, will always be connected to Cathy.
I started to simply delete this post, erase all signs of it, but it tells a part of the story that Cathy wanted to tell. And a couple of the comments that follow tell a more important part of the story. When the final chapter was written the bond between Mother and Daughter, even if that bond was not born of blood, was stronger than any force that tried to break it. April was right there with Taylor and myself every moment of Cathy's last few days on this earth and the two of them shared a lifetime's worth of love and reconciliation in that oh-too-short of a time.

Cathy started her post like this -

"I have tried so hard to not let this blog become a forum for anger towards anyone - I even wrote it a few days ago. In several posts I have mentioned April or " April's attacks". I have to say/ shout this out loud and I can't talk about it to anyone in the family."

She ended it with -

"I don't even know if I would want her to be around me as the last weeks and days come to an end - hopefully that won't be for a few more years."

She obviously had a change of heart, even though she did not get the few more years we were so hoping for.
So I have kept the last words she wrote here intact as she wrote them, but I know her better than anyone else could ever dream of, and I think I have done as she would have done herself, given the opportunity.

Her journey here has ended, and it ended as she would have wanted it to. With those she loved surrounding her, including her daughter April

Friday, January 2, 2009

I had another PET Scan today but it was too late in the day to get any results back. Last time I really felt like things would be OK and they were - kind of - the scan looked OK but my numbers were going up. I don't have a clue about this one - I don't want anything to show up but I want to know why I'm having so much trouble breathing, and why I keep loosing wait.

I'm so sick of all this - this constant feeling of someone / something is always just a step or two behind me. This has really bothered me since I got out of the hospital in Aug. I know that that whole experience shook my feeling of control and safety. Of course April's attack didn't help at all.
Also, I have never gotten back to my former energy levels.

If I was on the outside looking in and didn't know about all the physical things going on, I would simply see a very depressed person. So, am I depressed? Am I depressed because I'm so tired of all this crap and tired of not feeling well. Or, is it the other away around - depression is making me feel so bad.

I spend a lot of time feeling guilty - guilty that I don't cook but 1 or 2 night a week, I clean even less. I feel guilty that I can't keep Gage full time without becoming completely overwhelmed. He has been out of school for a while. I feel so bad for Tim - we can count on one hand how many times we have had sex in the past 2 years.

Then there's the shame, am I acting, is all of this really happening, I should be able to control this. Thoughts like " Get over it Cathy and put your big girl panties". "Cathy, why are you doing this to your family, to Tim, get a dam job". All this guilt and shame eventually turn into self hate. Then the thought process changes and sounds like this - "You deserve this, deserve to be treated this way by some family members". " This is you own fault". There are many more voices but they would not make any sense unless I spent about 2 days trying to explain.

Even though it has been several months since I was in the hospital, I have recently gotten new info about some of the things that were happening. First, I remember, vaguely, talking to Jeanine and another nurse about protocols for putting me on a vent. We were in some type procedure room - I never really put in real meaning to their question. Then I found out this week that the Dr's came in to talk to Tim and me about the possibility of placing me on a vent - I don't remember any of that. I also found out that when I woke up and couldn't remember why I was in the hospital - that it was several days before my memory came back. I thought I remembered as soon as some one explained it to me. I ask Jeanine about it on Xmas and she said that she felt that it was due to my declining kidney function.

Wednesday, December 24, 2008

You know, my first few post to my blog stayed on the surface - I didn't know how to get past that superficial layer with out it becoming an outlet for anger towards, dr's, family members etc. So, I quit posting - all families have fights, hurt feeling, and hidden resentments - but I didn't want to write about those things. Those feeling are fleeting but can cause permanent damage to relationships and/ or ones self esteem. The last thing I want when this life is over is for my family to go over my blog to try to somehow stay connected with me and come away feeling as if they weren't good enough, or I blamed them - I want them to feel closer to me when / or if they ever read this



I finally decided that I would use my blog, not so much as a journal of everyday life, but more like a map leading the reader with me as I continue my journey. Of course I have thrown in some personal views about various subjects and some memories that had a special impact on me. I have gone on the occasional rampage but in general I try to keep family stuff out.


By making the commitment to only write about my life, my struggles with cancer, my feeling, and only in general about how my family plays a roll in all of this, has helped, or maybe even caused me to be more reflective about life now and in the past. I have also realized that my anger and fear about finances ( kept me in a constant state of panic) has faded All of the misery I brought on myself and my family is all but gone. The people I needed around me the most were the same people I was pushing away. Now I can let them back in.

Tuesday, December 2, 2008

I am happy to report that my MRI was clear ! Saturday, while filling my med box, I realized that my pharmacy had switched my 20 mg SR Oxycontin to a 40 mg pill - now I only have to take one pill every morning - not two ! Gee, I wonder if overdosing myself with morphine had anything to do with my symptoms, it may even be what started my respiratory distress. At any rate most of the worrisome symptoms have gone away ( except for daily h/a) and the Prilosec seems to have helped my stomach. I'm still not hungry or even very thirsty but I can eat one or 2 small meals a day.

I'm very restless these days, can't sleep - in the past feeling of restlessness has always been followed by sudden change - not always bad - just an unexpected change. I guess the C in cancer stands for Change and maybe that is what I'm feeling or anticipating. You don't have to have special abilities to know that with cancer there will always be change. I keep asking myself if I'm just waiting to die - I really don't think so. The thought is never far from the surface, more so the last few weeks, but that will fade with time. When I turn out the light to sleep, my consciousness is not overwhelmed with thought s of death - I'm more likely to be worrying about money, or planning my next beading or painting project - giving myself a reason to get out of bed in the morning. Speaking of morning, it is almost 4 am, think I will try to sleep - good night

Tuesday, November 25, 2008

nothing important

I keep meaning to post, but I just haven't felt like it. I'm having a lot of digestive problem, in fact it is very hard for me to eat anything. I'm not throwing up, I just feel like I might. What is really strange about this is that as soon as food hits my mouth I start gaging - I have never been a gagger. I have lost about 8 more lbs. Not that I need to worry about loosing weight - I have plenty to get rid of- I do worry about why I am loosing weight. All of my scans as of Oct were clear, my blood work looks good except for a slight drop in hgb.

Other that stomach problems I have been experiencing some neuro symptoms. I find it extremely difficult to focus on any one thing. I have had some trouble speaking and pronouncing certain letters, not to mention that I just plain forget what I am talking about. And then there are the headaches - almost everyday, sometimes it really hurts, other times I feel all the things that go along with a h/a just not the pain. This morning I soaked in the tub and read - I kept seeing light yellow scribbled on the pages. I could move my eyes and make it go away but as soon as I started reading again it came back. Then there is always the possibility that the stomach problems are also neuro. So - do I have mets to the brain - or are all of these symptoms the results of prednisone PO and via inhalation ( thankfully I finished both of them on Sunday) and intense stress over worrying about it? I'm having a MRI of the brain tomorrow.

Of course I prefer the ladder, but I'm so scared that it is brain mets. I don't want to go that way - it never even occurred to me that that could happen. Dying with brain mets is dying before you die - "you" disappears.

Found out earlier this week that Loretta has been given less than a year to live. Now, I knew this, in fact I was sure of it, Lung cancer kills with in 2 years ( almost always). So if I knew all this why was I so shocked and saddened. It really blew me away! I told Tim that I was developing survivors guilt. But, I know that it is more likely because of my own fears about dying and the deep feeling of impending death.

Wednesday, November 12, 2008

just an update

Chemo has stopped for now, but that isn't necessarily a good thing. My markers continue to rise and I think that Dr. Grote was hoping that the chemo was causing the increase, as nothing new showed up on a new PT/CT scan. The only thing that had changed was a decrease in the activity of the tumor at T8 - everything else looked the same. My markers were repeated on Friday and again they had gone up - 25 points this time. They will recheck them monthly until ..........

Physically I feel, well, I'm not sure how I feel. Sort of sad and blue, but I don't feel doomed, but I do feel like my time is running out. I am most likely going through the 5 stages, although I'm not sure which stage I may be experiencing.

I am having more physical symptoms - nausea, no vomiting - an increasing dry cough, but I am breathing better- and back pain, my lower back hurts so bad - it feels so weak and if I stand up for even a few minutes, the pain become unbearable. I'm also having a lot of muscle and joint pain. I have had mets to the sacrum before, maybe it has come back or it could be increasing degeneration, them again, maybe I just pulled something and it will quit hurting in a day or two.

Spiritually I feel very calm and at peace. I'm in a safe place and am able to let go of more fears about what will happen after my death - when ever it is. Tim and I are very close again and I think it is because I have been able to let go of worrying about the house and other bills and have quit looking for someone to blame things on. Tim is Tim, and I wouldn't want it any other way. He always comes through, I just have to trust that everything will be as it is meant to be - let go and let G-d

Sunday, September 28, 2008

Time Flies

I belong to a on line Stage 4 breast Cancer list. There are about 800 people from about 20 different countries that read, post, or just lurk. Is has been a blessing to have this group. It is a place where you really feel you belong, others can understand your feeling, they are right there with you. These folks have been there in the middle of the night when I was paralysised with fear or sobbing because the sadness sometimes goes so deep. Whatever the time of day or the problem - the list is always there.




The list goes through it's stages - we will have weeks when so many new people introduce themselves that breast cancer really does seem like something you get from drinking the water. Then there are the weeks when people die one right after the other - some are fairly new to the list, but lately several deaths have been women that took me under their wings when I was new.



And I go through spells when I don't post much, sometimes I feel overwhelmed and just have to take a break, sometimes I feel to lazy to go through the motions, but lately the question of the newcomers have really troubled me. I have finally taken the time to look at why this may be.





The most FAQ from the new people have been " How long do you live with bone mets only?"That was my first question , my next one was " How long until it spreads?" The answer is easy - there isn't one - no one knows. But there is a lot of comfort from meeting others that have been around for up to 9 years ( they died over the summer), it gives you great hope for the future when you are only 1 to 2 years into mets. But these questions, I have figured out, have brought out my anger.





It was only 3 years ago that I was asking all the same questions, looking for reassurance that I would live another year or survive the newest treatment. Now, 3 years later, I still basically only have bone mets with involvement of the pleura - no spread to any major organs. This means that I should be doing well, no where near the end of chemo choices. Yet here I am,


facing a very uncertain future. I've known from the beginning that it is possible to die with just bone mets but I never expected it to happen to me - some how it doesn't seem fair even though the outcome is the same and the usual time line for living with breast cancer is pretty much the same.





Rationally, I know that I am not going to die tonight or tomorrow ( well, as much as any one does). My difficulty with this is the loss of control - yes I know that my sense of control is all a fantasy that I created for my own comfort................ but damm it - I love fantasies