Sunday, March 27, 2011

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.

Saturday, March 19, 2011

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.

Friday, March 4, 2011

Thanks be to God

When the dust settles and the complications become less complicated; when the sun sets in Glorious color of the Heavens and then rises once again to give me another day, another chance to be thankful for life, another opportunity to lend a hand to someone who needs one more than I; to wake knowing you are a good friend to some, a mother blessed with wonderful children, a grandmother awed by the new life in her family, a wife loved as no other and a mom-in-law actually loved by her sons in law..... thank you Lord for all these blessings and more. Were it not for You, I would not have the strength to perservere... you are my Rock!

Thursday, March 3, 2011

You are a Cancer Survivor When

1. Your alarm clock goes off at 6 a.m. and you're glad to hear it.

2. April 15th is still a great day.

3. You're back in the family rotation to take out the garbage.

4. When you no longer have an urge to choke the person who says, "All you need to beat cancer is the right attitude."

5. When your dental floss runs out and you buy 1000 yards.

6. When you use your toothbrush to brush your teeth and not comb your hair.

7. You have a chance to buy additional life insurance but you buy a convertible instead.

8. Your doctor tells you to lose weight and do something about your cholesterol and you actually listen.

9. When your biggest annual celebration is again your birthday, not the day you were diagnosed.

10. When you use your Visa card more than your insurance card. Amen

Sometimes what is really is not.....

Okay,  I have reconciled some issues with my oncologist, or at least the nurses triage which in most cases is much more effective than the doctor. Thank God for all you nurses out there, you are a gift from God and I appreciate you so much. Meds were changed, but not recent, in fact they were changed in January. While I understand the reason, I do not especially agree with it, hence my visit next week with the doctor will address the issue. I have found though, that my horrid health experience over the past weekend after chemo was most likely due to internal neuropathy of the esophagus, stomach and intestines. I have most likely reached a place where I am becoming intolerant to one of my meds and the neuropathy sort of puts those three organs to sleep, causing them to malfunction and resulting in pain and discomfort. As a result we are addressing the meds, whether to lower the dose and track effectiveness or eliminate and try others.  It is a reminder that my life is precarious, it can shatter when we least expect and it is a reminder that I need to make every day count as they could end at any time.  I hope, if you are a caregiver for someone with cancer, that you recognize the need for that patient to function as normally as possible. I will not break, at least not easily, and I believe I am conscientious enough to know when the work I wish to do, in the house, the yard or wherever is enough and I need to stop. If I am forced to spend the rest of my life in a recliner, or at this computer, or resting, I will die of inactivity.....that is not my style. My caregiver is my husband, and I acknowledge the depth of his love and concern, but he needs to let me fly a bit, even if I stumble, he needs to let me live while I can. It is hard, I am working on this with him, but it is hard, so hard.  So..... my task is to rectify and amend treatment as needed, his task is to love me even when I wish to vacuum or pull a weed....so that the time we have together is happy. For those of you too busy to stop and take a look at your lifestyle, I ask that you please do just that. Stop and check the food you eat, stop and be concerned about the plastics in your life, stop and check the pollutants you put on your body or breathe in your home. Take a moment to make sure your life is long, healthy and happy. I pray you are spared this disease and that those close to your are spared. You must do your part.... seek only positive pursuits in the name of life.