Mixed Bag
The beautiful sunset this evening – as viewed from my backyard.
First of all, I have to give big shout outs to all my friends and family in New York & Massachusetts weathering the storm of Hurricane Sandy. Fingers crossed that the damage will be minimal.
Secondly, I have to send out big sincere THANK YOUS to everyone in the blogging community, all my friends, and my family for all your support, insightful comments, and reassurances after my last post. This blog is such a gift. A beautiful gathering of folks from all walks of life. You guys are amazing. And you play a big role in the many successes of my cancer journey. Thank you.
I have to say that things were definitely on the up & up in the days following my last blog entry.
The act of pouring out my feelings on the blog definitely brought on some serious healing. As did the arrival of my in-laws from Brazil. And the beautiful summer-like weather we had in Ohio last week (it actually reached 81 degrees). As well as the celebration of my 38th birthday (thanks to everyone for the fabulous text messages, emails, phone calls, and facebook notes. I felt the birthday love BIG TIME). Even Miss M seemed to be turning a corner and was back to being her silly old self.
Plus, the local NBC affiliate (WDTN in Dayton) aired a segment about me and the blog on the nightly news. How cool! You can check it out on their site.
And I was filmed again this past Saturday at a fundraising event for Pink Ribbon Girls. Which is this amazing organization started up by two young fiery women in the Dayton/Cincinnati area who provide FREE meals, house cleaning, childcare, and transportation to & from treatment to women battling breast cancer. What a total god-send!
At the fundraiser event I was also lucky enough to meet fellow blogger Tami Boehmer and her husband Mike. I have been following Tami’s blog since I was diagnosed and have written about her before. Her book From Incurable to Incredible has become like a bible to me. It confirms that you can beat the odds. Exceed expectations. Be the miracle. Whenever my hope starts to wane, I pick up her book and am reminded that anything is possible. Thanks Tami!
I also got the good news that my INR blood clotting levels finally stabilized at 2.1 where they need to be. Meaning no more needles in my belly. Hooray! I only have to take the blood thinner pills now. Way easier!
Of course, life is never all sunshiny days, rainbows, and happy endings…
It turns out that as a result of all the Heparin blood thinner shots I took, my white and red blood count levels have dropped. Lovely. The side effect even has a formal name, “Heparin-Induced Thrombocytopenia”. And happens to 1-2% of people taking Heparin. It can lead to both excessive bleeding AND excessive clotting (how they both happen at the same time is something I’m still not clear on). I just love how the blood thinners I’m taking to prevent a blood clot can actually cause blood clots.
I’ve also packed on close to 10 lbs since I started taking blood thinners 3 weeks ago. According to my internet research, this is a common side effect. Great. And isn’t it funny that when I inquired about side effects of these new drugs I was assured there were none. I should have known better. There always is. Oh – the wonderful world of pharmaceuticals!
This got me thinking about how often I end up being the 1-5% that experience horrible side effects from medications. And renewed my interest in pursuing a more natural healing pathway. My oncologist is talking about having my ovaries removed, taking more hormone drugs, and continuing with the Herceptin. But I’m not so sure I want to do these things.
I know in the end, I have to go with what feels right to me. These are my decisions to live with. No one else’s. And ultimately, we all want the same thing (I hope) – For me to live as long as possible and enjoy this life.
But still, I’m having lots of anxiety about going against the grain. Saying no. Refusing my oncologist’s suggestions and charting a different path. I plan to meet with a naturopath in the upcoming weeks, as well as another woman who went against the grain and is still here to talk about it decades later. Hopefully this will help me make some decisions.
This week has definitely shown me what a mixed bag life can be. Full of beautiful moments, joy, and new adventures – as well as unexpected hiccups and unwanted consequences. I guess the key is to enjoy the heck out of those beautiful moments when you got them and learn to weather the storms. It can’t be all good or all bad forever. Somehow you’ll always end up with a mixed bag.
Life goes on. Today I feel good. Tomorrow is a blank canvas.
Here’s to hoping we can all pull a few more goodies out of the bag.
Love to all. – T
wow everything about you and your grace is my inspiration, we love you T.
kat
“Pure Hindi dance, tempt no choirboy” — “A bitchy moron poet: a pride unchained”
I couldn’t think *what* to make of “Heparin-Induced Thrombocytopenia” — so I stuck it into an anagram generator, and two of the phrases it produced are offered above for your entertainment. Good to hear of the media interest — and even better to have the re-affirmation that you are clear on making your own decisions and following your own path. Keeping you and your whole family — and for this entry especially Heron and your in-laws — in my thoughts and prayers as the autumn winds whip around us — Much love to all — John
i have problems with pharmaceuticals too. when this happens it is because our detox pathways (phase 1 and 2 this is hard science not alternative) are blocked my genetic mutations. have a genetic test done. it checks for molymorphisms and 0nce you do that you can figure our which class of drugs it is that you can’t tolerate and what things trigger their toxicity and their slower than normal detox form your body, bad reactions or sometimes no reaction because you don’t even metabolise it all and pointless to take. this is the test i had done with my doctor http://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf this was done at genovations, but there are many places who do even more extensive testing. http://www.gdx.net/tests/search now remember this is functional medicine(i sent you links about it earlier remember) so to find a doctor who does it is hard, to find a doctor who really understands it is even harder, but worth the effort. there are cancer specialists who do this and can help you better understand what medications you should and should not be taken given your genetic mutations. i worked with autistic children and the parents are full on into this stuff and super experts, they will provide a lot of info….dr amy yasko seems to be the most educated one for autism, but it is really complicated stuff…………..get out of that 1-5%! the great thing is a lot of these doctors can work with you by phone or by email, and there are a lot of forums where people share information. it is a proven hard science in it’s infancy stage so doctors and patients alike share in blogs and forums………….good luck!
Great info. Thanks Alyssa. I did read up on functional medicine per your earlier comments. And it sounds Like something that is totally up my alley. I will look into this blood test as well. Much appreciated. – T
*polymorphisms not molymorphisms……….oops
If I may be so bold? You’re right to do your research and do what your gut tells you….just don’t fall into the trap of rejecting ALL modern/western medicine for simply BEING modern/western medicine.
(Although MY gut tells me you’re way too intelligent to fall into that trap.)
Keep up the good work!
Thanks Doe. And no, I would never totally reject what western medicine has to offer. I said yes to chemo, surgery, Herceptin and other meds. Just feeling like it’s time to let my body regroup and do a little fighting of its own now. All the best, – T
Terri, I’ve been following your blog for a few months, and I just want to tell you what an inspiration you have been to me. With everything you and your family has had to go through in the last few years, you still carry yourself with grace and dignity. My prayers go out to you and your family, and also my deepest appreciation for being such a positive role model for others that may be struggling with cancer!
“And isn’t it funny that I when I inquired about side effects of these new drugs I was assured there were none.”
Well, no. It isn’t funny at all. We all should be paying LOTS MORE ATTENTION to what drugs we are taking via doctor’s recommendations.
As example, I have been having HUGE difficulties for roughly six years breathing.
Just breathing. I’ve been told several times that I’m only getting about 1/3 the oxygen I need to live toward the end of this time.
A doctor I know personally insisted that I look up the drugs I’m taking on the computer. I didn’t want to, but I finally did. TWO of them shorten breathing ability. The third one causes me to cough severely and frequently. It now feels like I’ve been close to death for a long time because of LEGAL drugs.
We should ALL be alert to this sort of thing. DOCTORS have high faith in drugs. I no longer have any faith in drugs and less every day in doctors. That “there are no side effects” is getting to be a ridiculously common statement.
Terri, I’m quite glad you are striving for happiness again. The “pity pot” isn’t in tthe slightest progressive. It just makes coming back to reality a longer trip.
Stick to this new policy and you WILL win.
I expect you will.
Lee
Absolute craziness isn’t it?!!? I’m feeling the same way lately. All these side effects are driving me crazy! So what did you decide to do? Are you still taking the meds? Are there any alternatives? Six years is a LONG TIME to be having breathing problems. Hope you can figure something out.
Thanks, really for facing the reality that it’s seriously difficult to not breathe well for so long. Once they began talking about putting me on oxygen, I really got scared. Instead, I cooperated by taking TWO MORE drugs, both inhalants. Now I see that I’m taking even more drugs to compensate for the bad ones. But they do make breathing a small amount better. One of those gives me a humungous rash, but hey…I can breathe a little better . (Progress!)
My doctor-friend suggested I cut the one drug out entirely. I did that about 6 weeks ago. Change is slow because I’ve been on those medications for so long.
The 2nd drug, the other breathing-cutter, I broke down to half a pill. I stopped the one about 3 weeks ago when I called Social Security and the woman (from SS) said “Ah! You must be taking L*********!” I was really shocked, and I stopped immediately. I still cough hard but less often.
I’m now on an OTC (Over The Counter) drug called VANA TRACE PLUS, which my friend’s friend, a diabetic specialist, says will help INCREASE my oxygen intake, and eventually eliminate my category 2 diabetes. I think I may live a bit longer. (For anyone interested in this OTC drug, the name of the company is PRIORITY ONE: http://www.priorityonevitamins.com) I do NOT know if this will solve all my problems, but it sure would be nice if it helps SOME of them.
Sincere thanks for your concern, Terri. It implies you are well on your way back from depression, so it’s double-good-news to me! (One must look PAST the tip of one’s nose to get past the “pity pot.” And it works!)
BEST TO ALL US FIGHTERS! (That is, everyone here!)
Lee
Amen Lee! So glad to hear things are looking up. Keep on fighting! – T
If a medical person told you that the drugs you take don’t have any side effects, this is the international sign that they are incompetent or insane, or both, runaway runaway!! Please please please find an oncologist that will work with your alternative search and not against it. The doctor I have now is the first one in my life to treat me as a research assistant instead of cattle, he will actual listen and doesn’t have a problem with suggestions and questions about alternative treatments. We are actually curing health problems instead of saying “oh well that is a reoccurring syndrome you have to live with”. So these types of Doctors do exist.=) You might look for recent graduates with a couple years experience, still close enough for their medical training to be fresh, leavened with some real world experience. Good Luck, Blessed Be, and may the Bona Dea Bless and Keep you.
So glad to hear there are good Oncologists out there – And that you’ve got one. I do genuinely like my guy. He’s on the older side – but has a fantastic bedside manner and seems to genuinely care. He’s more open to the “natural” stuff I’ve been doing than the doctors I saw at Memorial Sloan Kettering in NY. But he still (like most doctors out there) believes that traditional treatment methods are the way to go. I do have an appointment with another oncologist set up for next month. He’s in NY though. That’s the other tricky part… Living in small farming towns in Ohio doesn’t leave me with too many doctors to choose from. But I will continue to travel wherever I need to go to get the best treatment. This is my life we’re talking about here 🙂 Sending blessing back at ya and good luck on your own journey! – T
I love how you’re working your way through this, deciding what way is best for you. I mean, I know how anxiety-inducing it can be. You’re making big decisions, and going against the grain of the experts, and maybe even going against their advice. But in the end, it’s your life to live. You need to understand the situation as best you can, understand what they want, and understand what you want, and then move forward with it.
You’re a living example that a life is not just the chemical soup and meat machine that is a body – it’s an ongoing process involving that and the mind and spirit, too.