Meltdowns Occur

To admit to a meltdown is a sign of weakness to me, so I generally avoid them at all cost. However I acknowledge that even the most positive people have fears, guilt, anger etc and we tend to dump all that in a jar and push it the backshelf of the pantry. Every now and then, the jar gets a nudge and it slips over the edge and crashed to the floor where it breaks into a thousand pieces. It can happen for no good reason, no bad news received, it just happens and when the jar breaks you are engulfed with all those emotions you try to hide. My jar broke yesterday, I had no reason to feel down or overwhelmed but suddently I felt guild for having Cancer which controls my life and my families. I felt guilty over having ruined the retirement years for my husband, for intruding into the lives of my children who have families of their own, for being a worry to my elderly father and sister (not so elderly xoxoxo) and for not living up to my Positive self for my supportive friends. I felt the need to be alone, to go through this alone, to get a divorce or separation, to not be a burden to others. I cried uncontrollably the whole damn day and during the night my life passed before me keeping awake till 4:00am. It was debilitating to go through and although saddened by it, shared with my eldest daughter who called at the wrong moment... or perhaps the right moment.  After the storm settled, I realized that all that I wanted was totally wrong.... the worst thing a cancer patient can do is retreat into isolation. I can not, nor will not do that even if my heart breaks at the impact this disease has on so many others in my life. My daughter reminded me that if my husband or anyone did not wish to support me through this crappy road, they were and are free to leave.... they have not and I thank God. So, please note my friends that while generally positive and very much proactive during this journey, I too am humbly human and I break now  and then.   This will pass, feeling better already, and ready to continue the new weed killer regime which is tolerable to far. Thank you all for being there, I do not deserve you.

Happy Mothers Day

Today is beautiful and I wish all you mothers out there a wonderful day. I am so blessed to have two beautiful and successful daughters, who are mothers themselves, who love and support me through this tough road without thoughts of anything except my health and comfort. That you God for blessing me so. 

On another note, my previous post queried a friend to contact me since I lost her phone number. As is the norm, as soon as you claim defeat in finding something, it turns up... so I have the number found in a most conspicuous place. I wonder sometimes if my brain is adversely affect by chemo.... I forget so much anymore.

This new chemo cocktail received over a week ago, is okay I think. The first seven days were miserable with nausea and I have had some discussion with a medical friend who suggests I get a card for legal medical marijuana... to bake into cookies or ? which, according to many, will relieve the nausea. I intend to inquire this coming Thursday when I go in for my second treatment of this series.  The good news is neuropathy is gone, except for that portion which is irreversable, and I look forward to using our pool this summer when temps exceed 110.  I have not lost my hair yet, but keep looking in the shower for signs... lol    and the diarrhea never came as expected this time. So all and all, I am doing pretty good. On day 8 I felt quite normal.

I continue to count my blessings daily for supportive and fabulous friends, loving and wonderful family and a husband who should not have to spend his final years dealing with my crap.... I wish I could change that, but cannot.  I got a "juicer" for mom's day which is to lead me on a healthier path of food intake and may help when I just cannot eat solids. I look forward to learning how to use it. I also received books, and I love to read and a blingy watch which satisfies my desire for something personal since shopping is and has been out of budget for a couple years now. Thank you girls.... and loving roses from my hubby who knows I love fresh flowers especially here in the desert. Thank you all. And remember, to seek only positive pursuits.... it is good for you. Blessings

First leap

Hi, first leap over the provervial log in the road went pretty well. I expected all kinds of new symptoms or side effects and except for a week of mild nausea, it was not bad. We shall see what comes as we plow on with the new chemicals. While this is usually a blog about my journey or information that may be of use, forgive me for making this personal. I need to contact one of my commentors, Therese and I cannot locate her phone number. So, Therese, is you are looking this way, send your number to my email at deborahereth@yahoo.com. Thanks to all of you and your endless support. I could not leap the log nor traverse this road without your support. I am eternally grateful. Thank you.

First log in the road to healing....

Those of us who have cancer try to have positive expectations regarding treatment, however we are all too aware that there will be hurdles, hence my new log in the road. Yesterday I got the result of my most recent PET scan which monitors tumor growth to check on the effectiveness of current chemotherapy treatment. Mine came back pretty bad this time, showing growth in tumors not shrinkage. What this means is this chemo cocktail is no longer working due to my body building up a resistance to the week killer after a year and four months. I have been expecting this log, but it is always a surprise when you come upon it. Now, I shall cross over this impediment and move on. I am on a new chemical cocktail which at its best should keep this at bay another year or two. At this time there is one more regime available when this new one stops working then it is off to clinical trials if any available and adopting the life of a Guinea pig... We will address all these issues as they come. I have also developed a colon hernia at the point of surgery. It is apparently not dangerous but I must curtail lifting anything heaving from now on to avoid pressure there. After a weekend of lifting grandkids, no wonder.... I find it so hard to stop doing normal things... I do not want my life impacted that way, I need to remain active. Perhaps one of those tool belts for guys who lift all the time would help when I see the grandkids. We shall see. While disappointed treatment has met an impasse, I am resolved to adopt whatever lies ahead in the hopes of prolonging my life and maintaining some quality thereof.  On a happy note, I befriended someone at the cancer center yesterday who was experiencing her first day of chemo. She was fraught with fears and I counseled her for over an hour. I also answered many questions about my own health with an elderly patient for some time. Later a woman sat next to me and said I was the most inspirational speaker she had ever eavesddopped.  It made me feel so good that I can pass on a positive attitude to others. Something we all can benefit from in our lives at home or at work. I remain positive and hopeful that all of you folks, healthy or not, take a long look at lifestyle and start protecting and prolonging your life now. Love to all and seek only Positive Pursuits.

Patience, Positive, People, Pickles

Ok, these are a few of my favorite things!  Patience is something I hang on to with everything I've got as my chemotherapy side effects are lingering longer than they used to... hence my good days are getting shorter.  Positive is something I hang on to dearly as there are days when Positive is hard to come by..... today I apologized to God for being pissy... yes pissy all day. I get that way when I allow impatience to get the best of me and since we are traveling tomorrow to our daughter's home in CA for the Easter holiday, I want to feel good and I do not. I will pray for healing tonight and apologize again. This is the time of year I should be on my ever loving knees thanking God for the Resurrection...I know this and the thought humbles me. People, another favorite being... I love people, they are my strength, they make me laugh, they hold me up, they are there for me even when I do not know they are there (thank you all) and I hold people as a precious commodity in my life. And  dill Pickles, sorry but sick or well, they are one food I can taste.... and boy do they taste good. :) So, may the Lord Bless you this Easter, keep you safe on the road or at home and may we all rethink our lives: can we do more for others? the direct road to happiness you know. Can we be more Patient with others, can we  be more Positive about our goals, can we include people in our lives that perhaps we would not normally include? And should you be inclinded.... EAT PICKLES!  ps I think I will start a Card Line entitles Memory Loss is Bliss....I have some good ones tucked away if I can remember them.... lol

After

 I have been dilligent now about staying on top of all provider activity. Resolved the issue with the expired meds given to me and using the wrong medical provider for take home weed killer (chemo)! This mistake, while did not cost me ill health, will cost the Cancer center some dollars as they will pay for the provider contracted in error. Guess that is why they have medical liability insurance! Glad the mistake was not at the expense of my life! That will not happen again.

Today had an opportunity to meet with old (young) friends for whom and with whom I worked in the days of employment. It was a beautiful day and I hope those that attended the brunch event know just how wonderful it was to reconnect live and in person. For those of us with Cancer and unemployment to boot, staying home, dealing 97% of the time with medical providers can drag you down. I know, I am responsible for considering more enlightened activities but just to talk with people is wonderful, especially if you know them! :) Anyway, I had a great time seeing friends and sharing stories and hope they know how much that meant to me. Hugs

With my dark week of chemo side effects effectively gone last Thursday, I am good to go over the weekend and for the next three days. Feel good, look good, life is good.  While I dread chemo on Thursday next, I shall not dwell on that until perhaps the night before... then I really do not dwell but an unspoken pall sort of hovers around my aura which now should look pretty colorful but by then, gray perhaps.

I have considered preparing a "bucket list" of things I wish to see or do before.... well, before... but without an adequate income, the bucket shall remain empty. Not much I wish to do that is zero in cost... so instead I am going to try to stop procrastinating and get back to writing. I love poetry and writing and have a book in mind, but need to pull it out of my head and get it down on paper. Got one childrens book done, need to self publish but the important one in my head remains dormant.... kick start in process. :)

So, I have a Survival DVD to watch regarding eating better.... and three books to read, one to write and dinner to prep. Guess I had better get going. Hope you are all doing your small part in managing your own healthcare, making healthy choices, and staying above all else: POSITIVE.

Trouble in Rivercity

It never fails to amaze me how inept healthcare providers can be. I know we are all human, but come on people....  What I am about to describe only re-affirms that we must be exceptionally dilligent in monitoring our own care... and while I have been dilligent, I too get wrapped up in the muddle and stuff slides.

I received chemotherapy on January 27th using a 5FU Party ball worn home and delivered intranvenously for 44 hours. Provided by in home healthcare Altius Systems.

On February 1, 2011 my healthcare provider changed as did my in home health care provider, nows Critical Care Systems.

Scheduled for chemotherapy on February 10th but skipped this treatment to go to California to assist my father who was in the hospital.

Next chemo scheduled for February 24th, on track and 5FU delivered intravenously for 44 hours and provided by Critical Care Systems.  Was very sick this time and conversed with oncologist and nurses as to why, clarified doseage etc. Discussed a dislike of the pump vs the party ball but understood the reason why it was used.... had to do with party ball size inadequate to deliver prescribed doseage.

So far all okay.

March 10 scheduled for chemotherapy but cancelled as I accidentally burned my foot badly and oncologist did not wish to compromise healing by having chemotherapy so cancelled.

March 17 received chemo as usual. Nurse hooked up "party ball" which I did not inspect as nurses are required to check name and birthdate on armband with the medicine which she did in front of me. I remarked that my doctor must have lowered my dose since I was receiving the party ball and not the pump. The nurse did not comment.

After 44 hours in home healthcare nurse from Critical care came to remove the medicine and noticed that the party ball was from another provider (they are tagged). That provider was my old provider Altius Healthcare who is no longer part of my healthcare network. OOPS   and in addition it had expired one month prior and should have been discarded, not delivered intravenously to me. Well, I got it. It appears that it's effectiveness is doubtful. 

So, now I received an expired medicine from the wrong company, I should not have to pay for it when my insurance refuses....

I received a drug no longer effective: so how will that help shrink my tumors if not good.

The nurse removed it, even if from another company so doubtful he will be paid for his services.

And I am left high and dry as it is a weekend and no one is available to fix all this till Monday.
So what are we going to do? Who knows. I do know that this kind of mistake, if not a one time event, can kill me.... either with lack of meds or a financial burden that should not be my responsibility.

So we are in the dark until Monday.   In the future, whether intravenous meds or RX from your pharmacist, check size, color, mg's, name of med and expiration dates etc. on anything you are about to put into your body. Just because a doctor ordered it and a nurse administers it is no guarantee it is correct. I accept some of the blame for not checking but not all. Hope this gets resolved.

Hard to stay positive, but hanging in.