I have decided to use a site called CaringBridge to document my health journey. I will still use this blog for perhaps the happier side of life in Germ.
My pirate scarf arrived today and I kind of love it.
www.caringbridge.org/visit/susanfleming
Tuesday, February 12, 2013
Monday, February 11, 2013
...and away we go...
This arrived in today's mail. Normally it is such fun to get a package but somehow this one just strikes me as blahhhhhhh. Hard weekend around here. As much as I do not want to read about cancer you cannot help but have to read about cancer to try to prepare yourself. I think I could have lived without the knowledge that as breast cancers go, I have perhaps the worst kind. Hopefully the small size and lack of spread of my tumors will save me in the end, but for now it sure does not do much for a girl's anxiety. I need Xanax for the first time in my life. And my free, cancer psychologist is on vacation. Welcome Monday.
Saturday, February 9, 2013
Alex, my chemo bear, Uben, and drug help
This is Alex who I've been working for since November. Alex and her husband have jobs that keep them super busy and out of town a lot. I'm her part-time nanny type (Mary Poppins? Loaner grandmother?) and I've been sharing this job with a Germany lady named Ingrid who I like a lot. A good arrangement all the way around. Alex is a busy, fabulous, overworked mom. The kids are at times nothing but absolute fun to hang around with. I'm outnumbered sometimes but I have really liked the challenge of getting them to do their homework when I ask them to do it....and to get the boys to stop trying to kill each other! (Any tips out there?) Mixed success but I was starting to make headway.
Then I go and get cancer. Have to give up the job for now but hope I can go back around the end of the year once I'm all chemo'd and radiated and have a clean bill of health. Nice prize to keep my eye on actually.
Alex is a biochemist who works for a local pharmaceutical company only cancer drugs. She's chemo drug woman. What are the chances? Heaven sent right now. She came today and filled me in with helpful hints and info on what my next few months might be like. Just when absolutely everything seems to be going wrong, along comes someone like Alex to help you with just exactly the information you need in your life. Thanks for taking the time today Alex. I'm going to miss those kids of yours more than you know. xoxo
Friday, February 8, 2013
My head
My upcoming baldness is the absolute least of my problems right now, but it is also the most emotional of issues for me as well. I am visualizing sitting in the chair at my regular salon having one of my regular cutters buzz me off and then shave my head. I see nothing but a lot of tears with this visual. Today at my book club while talking about this I wondered out loud if it would help to take friends. One friend announced that there would be NO way that anyone would be shaving off their hair with me. Hardest laugh I've had in a long time. Tonight I just got an e mail offer from a friend in California offering to do it. Absolutely not but thank you for the thought!
I ordered some head coverings today which I would post here if the server would cooperate. My favorite is a pirate scarf. I am not going to be a wig wearer BUT it occured to me today that I really do kind of love the lavender hair of Katy Perry in California Gurls so hmm maybe. I'm no doubt too old but I'm still pretty silly.
Just to cap off our week the dog is having his 4th knee surgery on Tuesday. Things will improve and until then we are just trying to breathe and remain somewhat calm.
I ordered some head coverings today which I would post here if the server would cooperate. My favorite is a pirate scarf. I am not going to be a wig wearer BUT it occured to me today that I really do kind of love the lavender hair of Katy Perry in California Gurls so hmm maybe. I'm no doubt too old but I'm still pretty silly.
Just to cap off our week the dog is having his 4th knee surgery on Tuesday. Things will improve and until then we are just trying to breathe and remain somewhat calm.
A selection in fashion colors
Basic black jersey
This is a cute arrangement, tested by me, looks decent
Liz sent me this wig. Dear God!
I hope I'll feel well enough to step out in purple!
Pirate. Yes. Will go nicely with the black nails I plan to have in order to try to save my nails from the horrors of chemo part 2 which in part can crack your nails CROSSWAYS. Black polish and ice might help.
Just kind of a cute hat
Wednesday, February 6, 2013
Today's news....
Tough day around here for everyone except the dog, he seems fine. Bernd and I, well we've seen better days for sure.
Oncology meeting:
1. May need a 2nd surgery. There were clips inserted in my tumors during my horrible biopsy and only one was seen after my surgery. If by mammogram they can still see the lost clip in the place where it started then it will have to be removed because it will be a sign that there still could be tumor. I will have another mammo for the clip hunt in a few weeks as soon as my sore boob can take it. They say if the clip has just moved somewhere else then no surgery. They hope it is out and they just did not see it somehow.
2. Lymph node biopsy was negative. Tumor removal except for the above, all good. Bone, liver, lung scans, all good.
3. One of the tumors is an aggressive type. Chemo starts in March. When chemo is over radiation will start. The tumor is a type that could have spread to somewhere else, bone marrow or blood so to not take any chances the chemo has to happen. Chemo x6, 3 weeks apart and then radiation daily for 5 weeks. So bummed.
We are needless to say pretty upset but will rally and do what needs to be done. No one wants to hear that their year will be cancer and a fight for their life. Local friends I need immediate help in the hunt for headgear. I won't be wearing any wigs. I have a few weeks, let's go shopping.
Saturday, February 2, 2013
My hero
My doctor, nicest dude ever. Always smiling, always pleasant, always ready to chuckle. The hospital staff say he makes surgery look easy. I never imagined I'd be so taken with a Polish oncologist, go figure! Dr. McSteamy looks like a movie star but my doctor is nicer. Thanks Dr. K. Wish I could spell your name, maybe someday!
2013 and scoring some life saving
I am a bad bad blogger. I used to be a better blogger but I ran out of steam some time ago in large part after fairly well adjusting to life in Germany. I documented all the craziness I could think of, then moved on to dog posts, and then fizzled out. It is now January 2013 and I've decided to attempt to start again at least for a bit in order to save myself from writing many many many e mails. I'm also doing this for myself since I have no memory anymore and may want to remember this year.
In my adult life I have faithfully gone to every mammogram I've ever been scheduled for. I have exactly zero genetic family history, so to skip preventative anything seemed stupid and potentially reckless. So I went. And passed. Year after year I passed, not only with flying colors but sometimes I would get my notifications 10 days earlier than promised and that can really make a chick feel relieved.
And then I flunked a mammogram. In December 2012. I flunked double. Two somethings were lurking in one breast so I went for more diagnostics. Ouch to some of it, but I had an ultrasound and the radiologist was encouraging, said he thought the spots were not dangerous but I would need to have a biopsy to be sure.
Biopsy. Nightmare. Pain. Horror. Stereotactic biopsies should not be done while women are conscious. I may become an activist for general anesthesia with stereotactic biopsies. I will never be having another one, at least not unless I'm out cold. Google for details if you dare.
The next day we got biopsy results that no one wants to ever hear. Cancer. 2 malignancies. Must come out. Now. This was like being fully awake in a nightmare that no one wants to be in. And I knew it. And said it out loud even.... that I felt sure this was a time period that we would look back on as one of the biggest nightmares of our lives. The tension is incredible and at times I thought I might just vibrate on out of my skin just to get a little relief from the stress.
So we meet with our first 2 oncologists and talk immediately becomes about mastectomy due to the fact of two tumors. I felt I could cope with this but said I would prefer to have a double mastectomy to be done with cancer once and for all, and to also be symmetrical. The boss doctor looked at me like I had just lost my mind. Culturally it must not be done here is all I can figure. I liked both doctors but loved the Polish oberartz. Pleasant. Smiling. Reassuring. Surgery was scheduled and they told us that after a tumor meeting they would be able to tell me what surgery I would be having. That call came and they concluded they would try a lumpectomy. Lucky for me I had enough boob to hopefully handle all of the tissue removal. They did tell me that I would have to have guide wires installed in my breast so that the surgeon could find the way to the tumors without rupturing them. New terror. Great. I was still so traumatized from the biopsy that wires in the breast, ah, no thanks.
Hospital check in day came on January 29th and as scary as this was, I finally felt like I was moving in some positive direction. Room was not ready. So happy we got up at 5:30 a.m. to get there early as instructed. Spent the day going from one procedure to the next. Nuclear medicine x2, ultrasound, chest X-ray, blood work, and my favorite, a nice chat with a psychologist. You get services you never dreamed of with cancer. I cried and cried with the psychologist ONLY out of fear of the wires. From the time I walked into the hosptial everyone who would listen to me heard the words "Wires and total anesthesia AND I MEAN IT" in German. The psychologist went to bat for me instantly with the doctors. My cousin who is a doctor and who has experienced it all had told me the wires were not in the same league as the biopsy, and though I believed her I was still just a big, fat chicken. I was drugged for the process. Major drugged. Threw up drugged. Did not care I threw up drugged. And I'll be danged, the process was nearly painless. I had 2 radiologists. One put his arm around my shaking shoulders and held my hand. Thank you unknown doctor for your incredible kindness.
I was lucky enough to have terrific roommates. One turned out to be a neighbor in my town and all I can say is that I'm just kind of mad that I have not met her until now. Swedish, fluent in English and fabulous. She went home as I was coming in but we had a couple of hours to talk. Helpful. A 21 year old Russian girl, adorable, nose job. Why she was on the gyn floor is a mystery but I was happy to have her there. Luisa. She's going to have a gorgeous new nose. No pain, sweet and helpful. Fluent English too. Then I had two lovely German ladies. The one next to me seemed to have had a big problem with lots of uterine cancer but after her surgery her tumor was found to be the size of a cherry. Relief all around. Her battle is not over but she came back to our room instead of intensive care so this was a plus. Spoke high German so no problem. The other lady in my room, also cancer, spoke only Bairish and though I kept telling her I had no earthly idea what she was saying the dialect never stopped. She was nice anyway.
I love my Polish doctor. His name sounds like Gorilla (but isn't) but this is what I called him. I commented that his mother must be proud of him. He said "I was a very nice boy" which just made me laugh. He was pleasant to a fault, always smiling, confident without being arrogant and other doctors told me that they would be 100% confident with him operating on them...that he's just got the gift of making it all look easy. He's Meredith Grey! He's Dr. Bailey! NO, he's McSteamy! I asked him to call me Susan and in these here parts people do not always easily comply with such American informality. No prob. Surgery went fine he said, though it was a fight to remove one of the tumors near my thorax. He wondered what I thought about how things looked cosmetically. My comment was that my boob was still there, the scars were big, but I'm not 21 years old anymore and the cosmetics are not an issue. These may be scars to ultimately be proud of. I have a pirate boob.
As I was fretting before going into the hospital one night and playing Words with Friends, my friend Sandy King had the wisdom to say to me that as scared as I was (the wires again) that they were trying to save my life and I needed to suck it up. This was my chant the whole time. They are trying to save my life, suck it up. I teared up at times but I kept saying they are trying to save my life, suck it up.
I sometimes feel isolated here in Germany but I have to say that since the chips have been a bit down in my life for the past few weeks I do not think I will ever feel isolated again. Neola, there could be no better friend than you. Christine, you probably prayed enough for us all! All of you who have written and crossed your fingers and prayed and pushed your thumbs, and sent cards and called and visited, thank you from the bottom of my heart.
Step one, sucked up and survived. And good to be home.
In my adult life I have faithfully gone to every mammogram I've ever been scheduled for. I have exactly zero genetic family history, so to skip preventative anything seemed stupid and potentially reckless. So I went. And passed. Year after year I passed, not only with flying colors but sometimes I would get my notifications 10 days earlier than promised and that can really make a chick feel relieved.
And then I flunked a mammogram. In December 2012. I flunked double. Two somethings were lurking in one breast so I went for more diagnostics. Ouch to some of it, but I had an ultrasound and the radiologist was encouraging, said he thought the spots were not dangerous but I would need to have a biopsy to be sure.
Biopsy. Nightmare. Pain. Horror. Stereotactic biopsies should not be done while women are conscious. I may become an activist for general anesthesia with stereotactic biopsies. I will never be having another one, at least not unless I'm out cold. Google for details if you dare.
The next day we got biopsy results that no one wants to ever hear. Cancer. 2 malignancies. Must come out. Now. This was like being fully awake in a nightmare that no one wants to be in. And I knew it. And said it out loud even.... that I felt sure this was a time period that we would look back on as one of the biggest nightmares of our lives. The tension is incredible and at times I thought I might just vibrate on out of my skin just to get a little relief from the stress.
So we meet with our first 2 oncologists and talk immediately becomes about mastectomy due to the fact of two tumors. I felt I could cope with this but said I would prefer to have a double mastectomy to be done with cancer once and for all, and to also be symmetrical. The boss doctor looked at me like I had just lost my mind. Culturally it must not be done here is all I can figure. I liked both doctors but loved the Polish oberartz. Pleasant. Smiling. Reassuring. Surgery was scheduled and they told us that after a tumor meeting they would be able to tell me what surgery I would be having. That call came and they concluded they would try a lumpectomy. Lucky for me I had enough boob to hopefully handle all of the tissue removal. They did tell me that I would have to have guide wires installed in my breast so that the surgeon could find the way to the tumors without rupturing them. New terror. Great. I was still so traumatized from the biopsy that wires in the breast, ah, no thanks.
Hospital check in day came on January 29th and as scary as this was, I finally felt like I was moving in some positive direction. Room was not ready. So happy we got up at 5:30 a.m. to get there early as instructed. Spent the day going from one procedure to the next. Nuclear medicine x2, ultrasound, chest X-ray, blood work, and my favorite, a nice chat with a psychologist. You get services you never dreamed of with cancer. I cried and cried with the psychologist ONLY out of fear of the wires. From the time I walked into the hosptial everyone who would listen to me heard the words "Wires and total anesthesia AND I MEAN IT" in German. The psychologist went to bat for me instantly with the doctors. My cousin who is a doctor and who has experienced it all had told me the wires were not in the same league as the biopsy, and though I believed her I was still just a big, fat chicken. I was drugged for the process. Major drugged. Threw up drugged. Did not care I threw up drugged. And I'll be danged, the process was nearly painless. I had 2 radiologists. One put his arm around my shaking shoulders and held my hand. Thank you unknown doctor for your incredible kindness.
I was lucky enough to have terrific roommates. One turned out to be a neighbor in my town and all I can say is that I'm just kind of mad that I have not met her until now. Swedish, fluent in English and fabulous. She went home as I was coming in but we had a couple of hours to talk. Helpful. A 21 year old Russian girl, adorable, nose job. Why she was on the gyn floor is a mystery but I was happy to have her there. Luisa. She's going to have a gorgeous new nose. No pain, sweet and helpful. Fluent English too. Then I had two lovely German ladies. The one next to me seemed to have had a big problem with lots of uterine cancer but after her surgery her tumor was found to be the size of a cherry. Relief all around. Her battle is not over but she came back to our room instead of intensive care so this was a plus. Spoke high German so no problem. The other lady in my room, also cancer, spoke only Bairish and though I kept telling her I had no earthly idea what she was saying the dialect never stopped. She was nice anyway.
I love my Polish doctor. His name sounds like Gorilla (but isn't) but this is what I called him. I commented that his mother must be proud of him. He said "I was a very nice boy" which just made me laugh. He was pleasant to a fault, always smiling, confident without being arrogant and other doctors told me that they would be 100% confident with him operating on them...that he's just got the gift of making it all look easy. He's Meredith Grey! He's Dr. Bailey! NO, he's McSteamy! I asked him to call me Susan and in these here parts people do not always easily comply with such American informality. No prob. Surgery went fine he said, though it was a fight to remove one of the tumors near my thorax. He wondered what I thought about how things looked cosmetically. My comment was that my boob was still there, the scars were big, but I'm not 21 years old anymore and the cosmetics are not an issue. These may be scars to ultimately be proud of. I have a pirate boob.
As I was fretting before going into the hospital one night and playing Words with Friends, my friend Sandy King had the wisdom to say to me that as scared as I was (the wires again) that they were trying to save my life and I needed to suck it up. This was my chant the whole time. They are trying to save my life, suck it up. I teared up at times but I kept saying they are trying to save my life, suck it up.
I sometimes feel isolated here in Germany but I have to say that since the chips have been a bit down in my life for the past few weeks I do not think I will ever feel isolated again. Neola, there could be no better friend than you. Christine, you probably prayed enough for us all! All of you who have written and crossed your fingers and prayed and pushed your thumbs, and sent cards and called and visited, thank you from the bottom of my heart.
Step one, sucked up and survived. And good to be home.
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