GOOD NEWS today......clear CT scan! I cannot express the relief after the anxiety-ridden time beforehand.
xoxoxox to whoever still reads this blog!
It is almost beyond belief that it has been six years today since I was diagnosed with cancer. One day I was fine, the next day I had cancer. How could this happen?
The horrible words which I heard that day are never far from my thoughts, because, as anyone who has had cancer can attest, the fears remain all one's life. In fact, cancer is never really "cured" since those evil little cells can lurk in the body for years before returning.
(As an example, my mother's breast cancer surgery was followed by NO treatment. It was 12 years later that cancer re-appeared in her lungs!)
Statistics say that the chance of recurrence is greatest in the first 5 years after treatment ends. My recurrence happened 1.5 years after I finished my first set of treatments. Once one has had a recurrence, nothing is ever certain again. All the stats are skewed. So I try to avoid them....as my friend Rita, a brilliant doctor, said at the beginning...."you are a statistic of one".
I did not fight, there was no battle, I was not brave or "positive", I took no journey. (I really dislike all that jargon --- and do not believe that positivity has anything to do with outcome. It just makes those around you feel better!). I did what I had to do to get through to the other side....not always graciously, I know. I whined and complained, and I cried a lot.
So here I am, living a much-diminished life due to the after-effects of chemo and radiation....but I am alive! I wish I were not so slow, that my balance was not worrisome, that I could DO more, that damage from chemo and radiation did not continue to affect me daily from head to foot. I wish, most of all, that I did not worry all the time.
I cannot imagine what would have happened had I not taken a calculated risk and quit both kinds of treatment midway through in the winter of 2012. I am grateful for the advice of a smart pharmacist at the hospital (the kind of pharmacist that deals with oncology) and some great nurses on the cancer floor.
Treatment success is often measured in terms of eradication or control of tumors, rather than the overall well-being of the patient. But chronic toxicities can arise months and even years after treatment. Cancer information is so scattered and unreliable.
I never thought I would live long enough to have a conversation with Charlie, but I did! He and Clara will sometimes ask me why I am so slow, but they are pretty patient. They look at me and see someone who looks okay (looks are deceiving) and loves them more than anything in the world. That is what I really want them to know.
Mostly, I am thankful for Bob, Laura, Ken, Brendan, and Debbie who have all helped me through the absolute worst of times these last six years.
It has been so long since I have written here. I have friends and family who do not participate in FaceTime and ask why I do not write blog posts any more. I think it is sad that the less writing people have to do, the more popular. Used to be blogs, then people went to FaceBook, then to Twitter (140 characters!) and then to Instagram where one barely needs to write anything. A sad commentary on today's communication, I think. No wonder kids do not know how to write.
Well, here it is!
I was inspired to write tonight because, despite feeling not-so-great a lot of the time, life is pretty good. I could almost say that I am happy! I was able to celebrate Charlie turning 7 last week, something I never thought I would see. Plus, I am able to have conversations with him, something I could only dream about a couple of years ago -----when his speech consisted of a few sounds and when I thought this cancer was going to kill me sooner rather than later. I have lived long enough to experience Clara the fashionista "liking" me instead of running away from me. The difference between them is astounding....she says she "might" come and stay with me sometime while Charlie says he is coming to stay with us for 29 days!
Tonight I cooked dinner (something I try not to do more than 3 times a week, and usually simple recipes), went upstairs and got into my nightgown, and came back downstairs again to watch my "trash TV". Then I went back upstairs to get something that I had forgotten. Not so long ago, cooking a meal was an impossibility and going up and down the steps more than once a day was too exhausting to contemplate.
Coming down the steps, it suddenly hit me exactly WHAT and how much I am able to do. Nothing like what I did "before", but more. I will never be able to travel again; it will remain difficult to do too much in one day; taking care of the grands for an extended period of time will be hard (but I will do it); I will never be as quick-witted as I once was.
I am hopeful that my constant and overwhelming fatigue will be resolved by wearing one of those damn masks for my recently diagnosed sleep apnea. And also when my doctors figure out why I have a slow, irregularly irregular heart beat. It's always something. All of my problems are thanks to the "wonders" of chemotherapy and radiation. My oncologist has decided that I have a condition called Pelvic Radiation Disease, which can appear years after radiology. It affect bodily functions and there is no treatment. There is a lot of research going on in England but pretty much nothing here.
I am "moving" to the beach in about 10 days and am looking forward to getting there (but not all the packing and unpacking!).
Here are my "babies".
Will try to come back sooner!
I have had a good 6 months, relatively speaking. There were a couple of falls (cannot feel my feet) and that pesky gall bladder surgery. Summer at the beach was great, especially when we had little visitors. Overall, I have enjoyed life, especially my grands!
Tomorrow I see my oncologist to get the results of my 6-month CT scan -- which I had today. I have been on edge all week, worse than I usually am while waiting for the scan and the results. It is a looooong 24 hours between the test and the verdict.
I have been unable to focus or concentrate for most of this week. Even watching TV, usually my ace in the hole, has not worked. Should I read stuff on the computer, like North Korea perhaps setting something off, the Zika virus, the Flint water crisis, or the 3 escaped prisoners in CA? I do not think any of those stories will make me less anxious.
I have had a few bouts of anxiety this week --pounding heart and gasping for air. The only thing that stops this, and my awful thoughts, is being asleep --- which is hard to achieve. Last night I never got to sleep, despite taking Ambien.
Watching BLACKLIST tonight, I realized halfway through that I had not absorbed anything, so I had to go back and re-watch.
Then I looked at recipes on the computer, usually a great distraction....well, that did not help either because I like to plan out what to buy and cook and I find myself wondering "why plan ahead?" "What if?"
I have so many errands to do and appointments to make, but cannot seem to think about anything in the future.
I know I should be thankful that I am still here, since my "expiration date" passed long ago.
Thanks for listening. You would not believe how few people want to hear me talk about this stuff.
I should add that I had the BEST CHRISTMAS EVER. Charlie and Clara are at that absolutely perfect age where they are awed by everything. It was just a wonderful, happy day from beginning to end.
I have been very remiss and not written here since August. Nothing too exciting to report, really. Our good summer came to an end much too soon. Clara and Charlie spent a lot of time at the beach with us, along with Laura and Ken. Lots of good memories......both children are a continual source of entertainment and joy.
Ken and Laura went away earlier this month and I stayed with the children in Maryland. I thought it would be okay because they are in school all day and I lined up a sitter to help me in the evenings. Unfortunately school was cancelled for three days, so I was exhausted. But it was still fun.
We all looked forward to Thanksgiving at the beach. Unfortunately, very early on Thursday morning, I had to go to the ER due to another attack of painful pancreatitis. I had my first attack a month ago, then another 2 weeks later (which I rode out at home), but this was the worst. So I missed Thanksgiving and spending time with the kids. They DID sneak into the hospital to see me today -with a million questions!
I am supposed to be released tomorrow and have surgery back home next week. Cannot wait to get rid of this troublemaker!
Will try to post more often.
Thanks for visiting!
Warning - this is not a low-calorie treat, but is soooo good!
I used Ina's recipe but changed it a bit Ina's baked figs
I used 12 figs (that was how they were packaged). Sometimes I use blue cheese, sometimes goat cheese. Sometimes I use (horrors) pre-cooked/microwave bacon. It is soooo easy! I usually have to use a toothpick to hold it all together. This is such an easy recipe
I cannot believe that I had never eaten a fresh fig until last summer (I do not like the dried ones). And the season is so short!
My steps in making these little bundles of deliciousness:
It has been five years today since I got the worst news imaginable....that I had cancer. Bad cancer. Aggressive and in a late stage. It was a moment of total fear and horror that I will never forget.
One thing I did not have was any symptoms.
If you have been reading my blog all along, much of this post will be repetitive, so feel free to skip to the last paragraph.
UPSC or Uterine Papillary Serous Carcinoma is an endometrial cancer, very different than uterine cancer. It is neither uterine cancer nor endometrial cancer, although is often referred to by both names. It is in a category of its own, unfortunately, which means that there is little information, few studies, and no colorful ribbons.
This is what I read when first diagnosed:
UPSC is an aggressive postmenopausal nonendometrioid uterine cancer that is often chemoresistant from onset, with low response rates, short response durations, and a 5-year survival rate of 18%
So in mid-2010, I started chemo, then radiation, and a March 2011 scan showed no evidence of disease (NED). This did NOT mean, however, that I was cured or no longer had cancer. I did and do.
Two other scans, 6 months apart in 2012, followed, both with NED. Four months after the second scan, I got really bad back pain. So I went to doctor after doctor, acupuncture, PT, massage, injections, hypnotherapy.....to no avail. My regularly scheduled scan two months later showed that the cancer was back. How stupid was I, not to have consulted my oncologist about this pain? Pretty stupid, but also very drugged for the pain.
My oncologist at Hopkins wanted to start chemo immediately, but I was hesitant. Didn't I want to get the cancer out of my body if possible? I had another, local gynecological oncologist whom I saw every few months (no, I had not told him about the back pain either!) so I took my scans and went to see him. He recommended that I have him do what he called "surgery with curative intent". Sounded good to me so I had this "big" surgery in fall of 2012. I did not do well afterward.....he had to re-position several organs and my body just was not the same.
Shortly after, I started chemo, sandwiched with radiation. My blood tests were repeatedly poor and I needed transfusions. I was hospitalized 3 times in 3 months for a total of 25 days. Endless vomiting and internal bleeding. I really was certain that I was going to die. But somehow, I pulled through and on one lucid day made two big decisions: to stop chemo and radiation (I had had half of the scheduled treatments at that point) and to change oncologists. If I were going to die from this monster, I wanted someone compassionate. This was in March of 2013.
At this point I could no longer walk, but got into PT for cancer patients and built up my body a little so I was eventually able to walk and resume somewhat of a normal life. The chemo had done something to my body that will never be "fixed" but at least I am here. Every day is a challenge and I am limited as to what I can do on a daily basis. I have learned to pace myself, which is difficult for an A-type personality to do. And I look fine, so people do not really know how much of an effort everything is.
I have another scan in a month, always a tense time. Six times since my last surgery, Bob has been able to text the word "CLEAR" to Laura as soon as the words were out of the doctor's mouth. I hope this time will be the same, but if not, I will deal with it. There have been huge advances in cancer therapy in the last 5 years, including immunotherapy. I am thankful for these years I have had to enjoy my beautiful grandchildren--years I did not think I would have. I may not be the most active Ammy they could have, but I am always here for them and love them unconditionally.