Sparky's Place

April

2009-01-03T00:09:00.006-05:00

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

2009-01-02T22:33:00.007-05:00

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.

2008-12-24T13:12:00.004-05:00

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.

2008-12-02T03:18:00.002-05:00

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

nothing important

2008-11-25T22:30:00.006-05:00

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.

just an update

2008-11-12T23:26:00.004-05:00

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

Time Flies

2008-09-28T22:06:00.006-04:00

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

The signs may be beginning to emerge

2008-09-26T03:09:00.008-04:00

I don't know if I ever stated it here, in my blog, but in my journal about this time last year I wrote that I did not think I would make it through the winter of 09. That feeling, vision, knowing, or what ever you want to call it didn't make since - for two reasons: First, I was really doing pretty well, my markers were hanging around normal, still didn't have any mets to major organs, and as far as anyone could tell, the chemos seemed to be working - very hard on my immune system, but working. Now this will sound very trival, but to me it is a more important reason to not understand my feeling of death. 2 maybe 3 years ago I had an awareness, what I call a knowing, anyway I came to know that I would die during a huge snowfall. I love the snow!

Now, we haven't had a snow storm in at least 15 years, we had not had more that 2 or 3 inches of snow in the past 10 year, and the kids have not missed a day of school because of snow in 5 years. One thing you have to understand about Winston Salem NC, is that in years past we would get 5 to 6 inches 2 to 3 times a year and every few years we would get big beautiful snowfalls sometimes reaching 12 to 20 inches - the last time that happened my 30 y.o. son was a toddler.

The past 5 or 6 years have been the warmest on record here - temps staying in the low 100's for as long 7 to 10 days without a break, and a break was temps dropping into the high 90's. These temps started as early as May the past few years and went all the way through Sept, except this summer. May stated off really hot, but I don't think we had any days in the 100's, somedays in the high 90's, but most of the summer was right where it was suppose to be. We got plenty of rain - a first for the past 5 years and on Sept 22, the first day of fall, the temps were in the mid 70's where they have remained. I have given you this lesson in our weather as evidence of thing that may yet come.

When I came to know that I would die during a big snowfall, I figured that I had several years left as there were no signs of our weather changing anytime soon. But now the signs seem to be falling into place. My breathing has continued to worsen, fluid continues to build around my lung - even when they drained 1500 cc off one day, 3 days later it was back. That was Aug 4th - I was admitted to the hospital for what was suppose to be a simple procedure to stop the build up of fluid and would only be there a few days. That few days turned into month - shy 4 days. While there, they found a new tumors on my spine, a rib and 2 lymph nodes near areas where they good cause problem. It was also concluded that my pleural membrane was one big tumor - oh yes - my chemo had obviously quit working.

Now I have started a new chemo, the last one before we have to go back to the seriously toxic drugs, and there seems to be signs that this new chemo is not working. I know from my experience as an oncology nurse that thing can look fine one week and fall all to hell the next. Again I tell you that the signs seem to be falling into place. And as for the weather - this is first time in years that there is even a reasonable possibility that we could have a really good snowfall. I hope I am wrong - I would really like to stay around for a few more years, but if I could choose my time to go, it indeed would be during a big beautiful, silent snowfall - I can't think of anything more peaceful.

Even if I am wrong about it being this year, I do realize that my time is running out. When this chemo fails, be next it month or next year, I do not want to go through what I went through when I was first dx. At least then I knew I only had to endure 4 treatment - I could count down the months of misery. This time it will be until it works no more or the chemo it's self kills me.

Plain & Simple

2008-09-14T19:00:00.007-04:00

I sat in the tub last night feeling the effects of a potential new problem - compression fraction at T8 - I didn't cry, didn't think of any insightful meaning from this new set of problems, I could only keep repeating to myself, " I just can't believe this is happening to me, I never expected to have cancer! " I just can't believe this!" " Why me?"

Sometimes, for all the thought, faith, prayer, and analysis that you but into understanding this dammed disease and the life it will over come, it all come back to 'Why me?" Plain and simple

The Need to Belong

2008-09-12T01:10:00.007-04:00

The last time I can remember feeling like I belonged was when I lived with Dee (my grandmother). I was only six when I left her and even if I was living with mom in Highlands it somehow never felt right, somehow I knew I was the 5th wheel. It didn’t seem to matter if mom was dating someone, living with a man, or crying over one - somehow I felt/knew that I wasn’t the important one in her life.

As I got older and especially if I was living anywhere but Highlands, the feeling of not belonging grew and grew. Even in Highlands I never had more than one friend at a time, sometimes two. Beth Edwards and Herbie Potts. They had been there longer than us by 20 years or more. Then there was Brenda and Kathy Henry, they were native to the land - literally, the dad was Cherokee. The point of this is to say - that for all the years I spent in Highlands, every summer until I was 10, plus the first 6 years of my life and several full years afterwards, those are the only names of children that I remember. Part of this is to be expected as Highlands was a tourist town and the population exploded by 30 or 40 thousand during the summer. Still, there were enough kids to build a school and even though the school went from 1st grade to 12th all of the lower grade had enough kids to make two classes.

I remember 3rd and 5th grade being OH so lonely, ( I don’t remember 4th grade at all) I really can’t recall even one friend in 3rd grade. Midway through 5th grade a Girl, Brenda, moved into the apt. right behind us - we were back yard neighbors and fast friends. We shared so much in common - children of divorced parents which meant working moms, poor, we both felt like misfits and were treat as such, and though we didn’t realize it then, both of us had past molestations if not continuing, but most importantly - we both knew everyone of our peer thought we were ugly - we thought we were ugly. I can’t remember anyone ever telling me I was beautiful, cute, anything of the such with the exception of Dee. Anyway Brenda was my age but a year ahead of me in school so we went to different schools. That didn’t matter we still found plenty of trouble to get into ( more on this later). All gppd things come to an end - she moved away, mom married and we moved here- to Winston Salem- but not before we met long haired freaky people. Hippies - we finally belonged and felt right at home.

My teenage years didn’t get any better on the inside, but on the outside I was having a blast. I was one of only a few “hippies” in the whole of middle school, other kids looked up to me, some were afraid of me - they thought I may have some kind of disease, but secretly, some of them thought I cool. I quickly fell and fit into a much older group. By the time I reached 14 I had overdosed on LSD, hitchhiked to LA, been in training school , begged to be placed in the Children’s home, almost given up on life completely, and had made several suicide attempts. Somehow, for some still unknown reason, I held on.

Life as it most often does went own and own as did the pain, fear, sadness, and molestation - different men same old shit. And the anger, it got deeper, meaner, and more uncontrollable. Even after I married I continued to be psychologically abused by my mother. I married had children, failed at motherhood for the first 7 years, maybe longer. Still only had one, maybe 2 friends at a time, hated going to parties if I didn’t know most people there, didn’t want to be around groups of adults like Sunday school or even Tim’s family ( somehow our friends didn’t count as adults). I was absolutely terrified of sounding dumb, saying the wrong thing, or embarrassing myself in some other horrible way. And now another even more devastating emotion was creeping in - self hatred .

Windmills and Pinwheels

2008-09-12T00:19:00.006-04:00

My mind is ever on, sometimes like a child’s pinwheel held out the car window on the way home from the grocery store. Alternating moments of color and brilliance - like the silver shinny side of the pinwheel. Other times my mind moves at a slower pace, reminding me of old photos I’ve seen of Dutch windmills. Either way my mind is ever spinning.

As long as I can remember this has been true. As a young child it spun slowly with play, wonderment, and fantasy . A little older and the pinwheel effect was turned on when fantasy and fun turned to fear and sadness as I was removed from my home, my childhood, my Dee, and made to live with my mom. ( A whole other story ) In my 20’s my mind just spun it’s wheel, spinning faster and faster trying to figure out my past - the abuses of body, mind and spirit I had tolerated most of my life. Finally in my 30’s, with the help of intensive therapy my mind began to slow. It slowed enough to so that things could fall in to place, into appropriate places. I was finally at a place and pace in my own mind that I could not only survive I could thrive.

Thrive I did. Layer by layer the old moldy past was peeled away, examined, and filed justly - at least for the moment. Over the years some of those layers have been looked at again and again, each time with a fresh eye, new strengths, new insight, new understanding, and plain and simple - each time I had grown up a little bit more.

It is most certain that conclusions reached in the past and even my most recent conclusions will change the next time they are looked at. However, because of my medical problems, it is not likely that I will continue to have the energy, nor the time to revisit many more layers. Because of this I wanted to get on paper some type of record of me and how I viewed my life in my own words.

Breaking Thuough Writers Block

2008-09-11T23:43:00.005-04:00

I haven’t done a very good job at keeping up with my blog or even my journal. Often, I feel most like writing when I’m angry with someone or the whole world. If I only write during those times, then my life appears to be filled with anger and self pity. But most importantly, those words, those simple symbols we use to convey information, thoughts and feelings can be so devastating when read out of context or without explanation.

I want to share myself, my story, my life - all of it, not just the angry painful times. My story is more about survival than death and grief, more about adventure than the everyday routine, and more about self discovery and hopefully the accumulation of wisdom.
The emotional expense, relief, or revelation of the many stories, thoughts, and observation are so brilliantly clear to me. I know exactly what I want to say, but once I touch pen to paper, the process of sharing information comes to a halt. My idea suddenly seem blurred, unimportant, silly, dumb or foolish. I become afraid of sharing , of being seen as immature or just plain stupid.

So………… I have become aware of “writers block” and now am finally, little by little, hammering through it’s wall.

Moments of Insight

2008-06-04T23:41:00.005-04:00

This week has been filled with somber observations. On Saturday night Tim, Timmy, Gage, Tim's sister and her 2 girls went down to Trade street to hear the music. Of course Gage had a blast with Amelia and Chloe and it was a breezy evening so the heat was tolerable. Tim & Jeanine were sitting beside each other. Then the kids had there chairs bunch up in a circle - sort of between but also in front of Jeanine and my chair then came Timmy's chair. Timmy spent most of the evening playing with and keeping an eye on the kid while us three sat, talked and listen to the music.

About half way through the night I noticed that Jeanine and Tim were just talking away. Because of the 3 chairs between me and Jeanine I was far enough away that I really could not hear what was going on. Now this was OK - I was enjoying the music and watching the kids play. The I saw it, this is what the future would look like without me. It wasn't a sad observation, in fact it gave me comfort - Tim would be OK without me - he would still enjoy life, my children and grandchildren would still be able to laugh, and play, once I was gone. Life really would go on.

The second observation happened today at burger king. I know that having cancer and going through the treatments have put years on me. I look at least my age if not older - I say that because I was one of the lucky ones as I did not age as fast as most of my friends - I always looked younger. Tim was Tim and after the 2nd degree burns to his face last year he looked like a baby. Except for his silver hair he had never looked really old.

But today, sitting across from him at lunch, I could see the age creeping in on him. His cheeks were beginning to sag and his throat looked like that of his 85 year old mom. I guess cancer hasn't just aged me.

Quick Catch Up

2008-05-25T23:23:00.003-04:00

Well it has been a long time since I have written but there is good reason for that.

Two days after I last posted I ended up in the hospital with port infection that quickly went systemic and but my life on the fence. Obviously I survived, but only after 2 weeks of IV antibiotics. After I had been home a week I broke out with shingles - my GP said it was the worse case he had seen in a very long time. Let me tell you - it was some of the worse pain I have ever had to endure. Even on a total of 80mg of oxycodone the pain was only at a tolerable level. Now the lesion are healed and most of the pain is gone, but it has left me with severe back pain. Actually, the pain in my back had been increasing for a while, so I really don't know if it is related.

Day 9 - my how things can change

2008-04-15T20:08:00.002-04:00

I have continued to feel pretty good. Had my second dose of Abraxane yesterday - but, and a big but, my labs came back all messed up. My white cell were ok, but my Hgm was down from normal to 8.7, plts down 103, the whole red blood line was way off. So, I went back today to get 2 units of blood.

Other than the above, the runny nose, dry cough, diarrhea has started back, and I do feel a little more run down. From this I have concluded that the Avastin must be causing the worse of the symptoms. I will have to wait until I have a build up Avastin to confirm my theory - may next Monday, then I am off a week, so it could be as long as 3 weeks beforeI know.
Till then I am going to enjoy feeling better.

Day 4

2008-04-11T00:21:00.005-04:00

So far so good. Food still taste good and as long as I remember to take my pain meds I feel pretty good. My pain meds keep me from sleeping well but as long as I get some sleep I think I will be OK. Oh, my nose started bleeding Wednesday morning - no biggy

I keep thinking that maybe I won't get so bad this time, or " wow this is a piece of cake". I so want to believe that it will not get any worse - maybe it won't.

Someone on the list brought up wishing her mom was still alive. That reminded me of some unwritten feelings. One of my greatest sadness's is that I had no parents to hold me, love me. So many times I just wanted to be a little girl, if only for a few min. Not having their love was bad enough - but they weren't dead. In fact they lived right down the street from me but as usual, they were to absorbed in themselves to be concerned with what others were going through.

Tim's parents care deeply about me but our religious differences are so vast, I just wasn't comfortable leaning on them. Thank G-d for Tim, a few really good friends and my children. The kids are helpful to varying degrees and then only sometimes. I know this is hard on them and am sure they find it difficult to deal with me on any level but mom. I think I am afraid to allow them in to my illness also. Since Timmy lives with us he has to face the facts more than the other kids.

Day 2

2008-04-08T22:32:00.003-04:00

As planned, I had chemo yesterday. Got there at 11am, they didn't have a bed for me yet so they told me to come back in 30 min. So I go back at 11:30, they access my port, draw my blood work and hook me up to a normal saline drip - I would say that all of this is done by noon.

Now it takes 30 min for each of my chemos to run in - I don't have any premeds or post med or hydration, just 2 drug, each taking 30 min to infuse.

My labs came back OK around 2pm, my chemo did not come up till 4pm - I did not leave there until 5pm - that is ridiculous.

Last night I was nauseated - didn't vomit, just nauseous. That was gone by this morning. My sense of taste has not gotten any worse and I felt pretty good until this afternoon. I tried to help my son and a friend shovel off a load of leaf mold - I was of very little help and was totally exhausted after what little I did. But all in all I can't really complain yet. I am having a lot more pain in my hip and back - that would not be caused by chemo ( explanation: chemo and the hormone prohibitors both can and often do cause a great deal of bone and joint pain) the reason I say that this is not r/t the chemo is because in both areas where I am having pain, I have also had cancer.

To chemo or not to chemo

2008-04-06T22:03:00.006-04:00

When you have metastatic cancer you learn that the meaning of the term “normal” is always changing. As soon as you get used to one way of spending your days, taking your meds, working, resting, etc, - “normal” changes and you have to figure it out all over again. And, if you’re on chemo “normal” changes almost daily.
I have been 4 weeks without Avastin (due to some problems) and 1 1/2 with out Abraxane. Tomorrow I start my 7th cycle with the normal regiment of drugs ( Abraxane every week for 3 weeks and Avastin on the first and third week, then I get a week off). Well maybe, You see, I have felt so good for the last 5 days and I don’t want it to go away. My norm will take a drastic turn for the worse by this time next week. And by the time I finish this cycle I will have spent the previous week & half and most of the week after in bed.
The reason I said “Maybe” is because I am seriously considering stopping chemo. I want to feel good, I want to have energy to work in my garden, play with my grandchildren, and all the other things that I want to do. To help me make my decision I am going to try and post to my blog everyday or 2 for my next 2 cycles of chemo. I am hoping that at the end I will be able to read back over my journaling and see something about myself, my journey that I haven’t realized before

Facing the fear and anger

2008-03-17T17:14:00.002-04:00

Four years ago when I was first became aware that I may have cancer, I wrote a great deal in my journal.
I wrote about how I hoped I would be remembered - really rather sappy stuff. I even wrote about how I felt a certain excitement about seeing what was on the other side. In my early writing I never talked about being angry or even afraid of dying. I did write about feeling of deep sadness that the little ones in my life - the ones that I feared would need me so badly as they grew up, wouldn’t - well, I just wouldn’t be them for me.
Now, 4 years later, 4 years this month - I know beyond a doubt that I have cancer and that I will die from it.
I can honestly say that many of my early writing still hold true. But now I can see the denial in my reported lack of fear and anger. I by no means dwell in sadness, fear, or anger - I can just look back and see those emotions - more in my action than in my written word. For instance, I can remember telling everyone about my cancer, it didn’t matter who else was around. If I saw someone I knew, I was going to tell them, if there were a few people between us I would just talk louder. I always replayed these instances in my mind and eventually I recognized my actions as shear panic. Because of past histories, I have spent the last 25 years trying to control my emotions. So, Since I could not allow myself to shout, scream, or cry about my dx -( I guess I didn’t and still don’t allow myself to really have an emotional connection to the truth of my being, ) anyway, the outburst of loud talking were my way of screaming. When I would replay it, I could viscerally feel the panic in my voice - I could feel it building to ever higher vibration. Those days have pasted me and I have realized that now days I seldom mention my dx / px to someone unless they ask. I do feel much calmer, and maybe a little sadder.
I now feel the fear of impending death, but only occasionally. Something will happen, maybe I will see something on TV, hear something on the radio, read something on the list, or and most often, I just suddenly
feel the reality of my own death. It is a gut wrenching all absorbing fear. Fortunately, theses frozen moments in time are few and far between.

How do you pled ? - Guilty, Sir

2008-02-25T20:56:00.006-05:00

I have been feeling so guilty about complaining about feeling so bad. After all, my orignal chemo was so much worse!

Then it dawned on me, last time around I was really sick for about 4 days every other week, and I could count down the treatments. In fact I often likened it to being pregnant - it is a long time not to feel well, but the end results is wonderful.

This time my chemo doesn't make me feel as sick as last time, but I aways feel bad. I may feel some better the day before and after chemo, but then it starts all over. And - it is on going, and going and going. It will go until it stops working, then I just move to something else. I may get lucky and get to go on an oral medication but from previous experience, I know that those cause just as much pain and fatigue - sometimes more.

My husband looks at me and feel so bad for me - he really wants to make me feel better but can't. I don't know how to make it ok for him - I guess I can't, so I feel guilty about that. Then there is my grandson - he's 4 and so cute. He and Timmy usually live with us and I pick him up from preschool and watch him till dad gets home. Timmy is really good about taking care of him and Gage does spend sometime with his mom and other g'mother. Right now he is not with us but will be back with in a month. I feel so much less stress knowing that I don't have to take care of him. I really don't know why, he isn't a problem and it is only for about 5 hours. More guilt

Now the guilt is really setting in. I shouldn't complain - after all I am still alive, not in immediate danger of dying, and not having the uncontrollably pain I witnessed while working for Hospice. Nor am I alone in all of this - I don't have small children I am leaving behind. Guilt, human emotion, human nature, my constant companion.

More on Health Care

2008-02-23T22:02:00.005-05:00

My last post talked a lot about my situation - this isn't about me!

No matter what your view on the war is, I think that every American would agree, with out question, that the men & women that protect our freedoms should receive the best health care this country has to offer - free. You know, like our men and women in Washington, I hear that can be a very hazardous - you might trip getting on the elevator.

A single person has to make less than $500 a month to get medicare. I don't know where others live, but here in NC you can't rent a small apartment for under $600 or $700 a month. So if you make say $1000 or even $1500/month, can you really afford to pay insurance premiums, especially if you have children . Speaking of NC, our mim. wage just went from $5.15/hour to about $6.15/hour. Hummmmmmm 6.15x40 = $248/week

We have been conditioned through out the generations to take care of our own, to pull up our boot straps, to be strong and proud. That is all well and fine, the problem is that along the way we have also come to believe that those that can't "take care of their own" are weak, lazy, uneducated, unmotivated - they are "THOSE PEOPLE" and they deserve what comes their way. How totally humiliating to need asst., to have to ask for help. I have to fight these feelings constantly. People just don't realize that all of us are "those people", just one serious illness or job loss away.

Totally off topic - but why am paying $3.09 for gas and Exxon made over $40 billion last year,
why are any of us ?

Political or Human Rights Issue

2008-02-22T23:39:00.005-05:00

Another Friday, another chemo treatment. Actually I got two treatments today - Abaxrane & Avastin. I got there at noon, hour & half later my labs are back - but there is a problem. I had too much protein in my urine so they have to call the Dr. Now this is where the fact that I don't have insurance really causes problems. You see, I have to get my treatment somewhere other than my Dr's. office, like most folks. Instead , I have to go to the out patient dept. of my local hospital. It really isn't a bad place and I like the nurses better, but when a problem arises it is really hard to get in touch with a Dr. It took two hours to get in touch with someone and it wasn't even my Doc. Each of my treatments takes 30" - I didn't leave there until 5:45 pm. At least I am off next week. To clarify - I do have medicare and it pays 20% of most things, but just one of my drugs is $15,000.00 every other week !

But the real issue is the state of health care in this`country. Like I said - where I get my treatments is not a bad place. It always takes about an hour longer and much longer if there is a problem. But my real issue is that I have been told I can't go over here, I have to go over there. I feel that I have a right to the exact same care as anyone else regardless of ability to pay. I belong to a list for stageIV Breast Cancer, and health care is an on going topic. Unfourtunately many people don't want to talk about it for fear of ridicule from the few people on the list that can't understand how we could not have insurance.

But I feel that we are the ones that can change the rules about health care, we are the ones going through this nightmare, we are the ones that are constantly worried about whether or not our insurance is going to pay for the next new med, or if they will stop paying for meds that are working. How many times have I read a question from the list that went something like this.....My spouse got a great job offer, but it would cause a change of insurance, or we would have to move to another state - would my medicaid lapse and for how long. How many of us have had long periods of time, because of chemo or disease process, that we just felt terrible. But we still had to make countless phone calls, send out endless email, or sit in long lines at a medicare office trying to figure out how to live for another month or two. Not only did we not feel good, most likely our brains could not comprehend or effectively sort it all out. All of this while some of us work, others have children, and some of us work and have children.We have to share our stories, we have to talk about them to everyone that will listen .

We, the patients, give a face and soul to the cold hard facts of health care in this country. Most people are only concerned with how much their premiums & co-payment will go up, as they should be - and they complain about it. But until they (or a loved one) have to make a choice between food and drugs, living or sending their kids to college, or feeling that they are holding their spouse back from the future they always wanted, they can't possibly understand what it is really like.I have heard from several on this list that my/our poor planning has left us in this situation. Somehow we have been lazy about finding ways to get coverage. But let's get real - how many of us ever thought that we would be in this situation, how many of us thought we had planned for everything, how many of us are wealthy enough not to have to worry about it.Please don't let this issue fade from your mind, please don't feel so embarrassed that you can't bring yourself to share your story.And if that isn't enough to convince you to shout to the world, then think about this. How much will health insurance cost our children and grandchildren.

A new journey and where it all began

2008-02-21T23:04:00.003-05:00

I have been trying to leave a record of my journey with breast cancer, in fact, I have left bits and pieces of it in many places. Some of it hand written, in different journals, some on the computer, just here and there. I hope with this blog to bring it all back together, gathering all of my thoughts together in one place.

In the fall of 02 I was laying in bed one night and felt a very definite small eggs shaped lump. I knew right then that I had breast cancer. I saw Dr. Jackson the next day, he also felt it, sent me for a mammogram - which came back “ nothing found”. I knew they were wrong, I tried to get them to feel it, but the Dr. wouldn’t touch me. Because it was such an obvious abnormality I should have been sent to a surgeon for a consult. I didn't have insurance so my Dr. decided that it was probably nothing.

A few weeks later Chris(my girlfriend) and I were going somewhere, anyhow - we were almost arguing about the state of health care in this country. I all of a sudden became teary eyed and told her that I would die from breast cancer because I did not have ins. There was an instant moment of complete silence, Chris and I looked at each other, didn’t say a word, but heard the truth in what I had just said - we didn't talk about it again for over a year.

The next year after minor car accident, I suddenly felt very odd so Tim took me to the hospital. My blood pressure was 196/140, they didn't treat it - again, I had no insurance, just told me to see Dr. Jackson ASAP. I Saw him the next day - a Monday. It had been about a year since I had seen him and that visit was for the lump in my breast. By now it was bigger than my fist. Again I had a mammogram, again it did not show anything and I was sent away - no consult, no nothing.

A day or 2 later Alice(another friend) was here helping me get ready for a show(my husband and I traveled to high end gift shows to sale Soap Du Jour. We were watching TV as we wrapped bars of soap and the news ran a story about the latest findings about the effectiveness of mammogram. The jest of it - Mammograms are not an effective dx. tool in women that are premenopausal and /or have fibrocystic breast disease. I looked at Alice and said something like “ This isn’t making me feel very good since I am both."

New Year’s eve I got a call form the Breast Screening Clinic at Baptist Hospital - said they had made a mistake and they needed me to come back in so they could recheck me. Of course they now did a bx. They said that the mammogram showed a 2mm tumor, that’s about an inch, much smaller than the fist sized tumor that I and my Dr. could feel - that is how poorly mammograms to for premenopausal and/ or fibrocystic breast disease.

For two weeks I waited in a constant state of high anxiety - I really didn't care that I had Breast Cancer - I just wanted to get to the next step. Finely, one day at the shop, the phone rang and it was Dr. Jackson.............the bx was negative! Alice was there, she was so happy to hear the news. She was hugging me and saying all the things people say to you under those circumstances. All the time Alice was hugging me, the only thought that went through my mind was " Don't get excited - this is far from over". You can't express that emotion to someone - they just don't understand how you can be anything but relieved, grateful, and happy. I played the part as well as I could and tried to sort things out in my on mind.

I was finally scheduled to see a surgeon, although it wasn't cancerous, they told me it was a fast growing benign growth that need to be removed. In two weeks I would see the
Breast Specialist and be scheduled for surgery to remove this - what ever it is.

When I was a child , a teenage and even a very young adult I wanted to be sick - I needed to be sick. That’s the only way I could get love and attention - at least that is what I witnessed with my mother. And when I was older, that is what all the medical shows on TV showed. Oh to have someone care as much as Dr. Gannon or Welby. I later realized that illness was a means to get what I wanted, it also meant that I didn’t have to be responsible for anything - I could just blame it on being sick, not feeling well - I had been taught well. As an adult I have had to fight tooth and nail to not be that little girl - it is so easy to fall back into old patterns of behavior.

Ever since I felt the first lump my intuition has always been that I would die from breast cancer. Now as I wait for the results form the pathology reports from the 5mm x 7mm x 3mm tumor that was removed, everything seems so chaotic. I couldn’t sort my intuitive feelings from my emotional feelings. I found myself going back and forth between no cancer, to not dying from cancer, and back to my original intuition that I will indeed die from this. Sometimes it is hard to know where defense mechanisms starts/ends and truth begins.

Last night I had my first dream about it, it was one of those dreams, the kind that is meant solely to give me info. All I got was the radiologist saying “ well, I’m a little more concerned now that I was” and another Dr. explaining the cell differentiation to me.Two weeks later ( something about a 2 weeks waiting period) all the reports were in - Stage IIIB, high grade, progesterone +, estrogen -, poorly differentiated. Prognosis - moderate to poor.

Now that is 2004 to present day all rolled into a few paragraphs. I wish I had started this in the very beginning, it would much easier to record my true emotions at the onset. But, I guess I will start from today.