still waiting...an update

my plastic surgeon's nurse finally called me this week. ( that is the good news). the other news, i will not call it bad, just disappointing, is that my surgery is scheduled for may 22nd. i have another appointment, a pre-op of sorts, scheduled with the plastic surgeon on may 12th. he has already gone over all the information with me, but he says that he likes to go over things again and make sure that the patient does  not have any questions. i am taking my husband, jeff, with me on may 12th. another pair of ears is always good, especially when people, me included, tend to block out things that we do not want to hear.

i remember when i was talking to the radiologist about my thyroid cancer treatment dose. he was talking about how i had two different kinds of thyroid cancer, and how it had spilled out into my neck and lymph node area. also, he was telling me why this had justified a larger than normal dose of the radioactive I-131 as treatment. i almost turned around and looked behind me. surely he must have been talking to someone else! he could not be talking about me, but of course, he was. it was a surreal experience. sometimes your mind shuts down a little to protect you. i am one who needs to know everything so that i can be prepared- it helps me cope and not be as afraid. but even me, and those people who are like me, sometimes can not exactly bear to hear all of the details. that is why it is good, even necessary to have someone else with you when you get disturbing information.

so, i have gone back to work. yesterday was my first day back since my cancer journey began. it was a hard day. i was bone tired when i got home, and not just from the work that i did, but also  the emotional ups and downs of the day. my coworkers were concerned and asked questions, which i was happy to answer. also, some of my customers knew and wanted to talk to me,too. i think talking is good, but it can be emotionally draining. do not get me wrong- i was grateful that people were concerned, but towards the end of the day, i was wondering if i would be able to make the drive home!

one person told me, " wow, you have really lost weight!". normally, i would be so pleased to hear this. i have lost about 15 to 20 pounds, and gone down a clothes size or two. jeff and i were watching television today, and a morning show was advertising a product that could cause you to " lose weight without diet or exercise ". i looked over at my husband and said, " cancer??. do you think that is what they are talking about?". we had a good laugh. laughing is good- i am making a conscious effort to do so every day. as i have said, i had rather laugh than cry if possible.

i am working up to the surgery date. my last day at work , for a while, will be may 21st. i am taking two days off on my long week. i just can not work 6 days straight now! i think that as long as i do not wear myself out, working will help keep my mind off things. i do like my job-i love helping people, so that will be good for me. i do not like waiting, though, and being patient will be hard. i will not know the staging of my cancer, or if i will need chemotherapy until after the surgery. the surgeon said that they will know as soon as the biopsy on the lymph nodes comes back. there is so much to think about and so much to wonder about in this journey. my road map is incomplete, to be filled in later.

" oh, the W-A-I-T-I-N-G is the hardest part" i believe tom petty said this. waiting is the AWFUL part. i said that.

today i went to see my plastic surgeon. i drove myself, and was a little nervous about driving in hickory. you would think that living about an hour away from hickory  all these years, i would be used to the crazy street names there, but i am not. my surgeon's office was on 50 13th ave. ne. of course, there is a 13th street, and a 13th avenue place, which might be near 13th avenue circle, or miles away! coming back, i had to find 5th avenue. there is a 3rd avenue, but no 4th avenue. perhaps the street planner had something again the number four?  still, i had a hand drawn map, that jeff made for me, so i got there no problem. i have a problem with most nav systems. it seems that they do not want to go the same way that i do. all that i hear from them is " re-directing, re-directing," and it drives me crazy.

the plastic  surgeon explained the reconstruction part of the surgery to me, and gave me a few options. it is more complicated than i had first thought , and will involve another surgery in about 2 months from now. but i am sure that it is much improved from just a few years ago, and for that i am thankful. i was not sure that i wanted to have this done. it is a personal decision, but my general surgeon highly recommended me having the reconstruction. i thought perhaps i was too old to have this done, but the surgeon assured me that i was not too old, and that it would make things a lot easier clothes wise.

of course, nothing about this whole thing is simple. the plastic surgeon will be there for the surgery, but if my general surgeon " finds something", and decides that i will need radiation, then it is a no go for the reconstruction. if i have to have chemotherapy,  the plastic surgeon can proceed. but radiation therapy changes the tissues, so i would have to wait until much later for the reconstruction.

i wondered about the term " finds something". this has been used a lot during my journey with breast cancer. i mean, they found cancer, all right. what else is there to find? loose change? a set of car keys that i lost one time? i am trying to stay optimistic about this, though. i am hoping that the general surgeon would not have the plastic surgeon come on board unless he felt that i have a good chance of having the reconstruction done at this point.

so, the two surgeons are still trying to coordinate their schedules. i have no surgery date at this time. the plastic surgeon's nurse is supposed to call me when they can get the surgery scheduled. i am hoping it will be next week, but it might be the week after. i am planning on working two days next week so that i can save up as much time as possible for after the surgery, and perhaps for my chemotherapy, should i need it. it is just a guess, but i am thinking that i will need some chemotherapy. i will just have to wait and see what my doctors think about that when the time comes. in the meantime, i am just playing the waiting game.....

"...sometimes the light's all shining on me. other times, i can barely see. lately, it occurs to me, what a long, strange trip it's been." lyrics from "truckin' " by the grateful dead

if you are one who has followed by thyroid cancer blog, you will recognize this title from one of my earlier posts on having thyroid cancer. i hate to repeat, but really, there is no other title that fits this post as well as this one.

i met with my surgeon today, and thought that i was going to have to make a case for having a double mastectomy. he surprised me. he said that because of the type of cancer that i have, invasive lobular, and because i have a mass in one breast, along with some cancerous calcifications , that he definitely recommended having both breasts removed. my surgeon told me that with this type of cancer, i would most likely have a return cancer in the other breast within one or two years. NO THANK YOU! i sure do not want to go through this again. and the constant worry, mammograms, maybe more testing,etc is not to my liking, either.

i was not sure about breast reconstruction until i talked to my surgeon. he convinced me, and i hope that i am making the right decision, to have it done at the same time as my mastectomies. he recommended a plastic surgeon, who would be in the operating room with him, and i am to see him in the next day or so. the plastic surgeon will be doing a fairly new procedure. i do not know all of the details yet, but basically he inserts a " pad" that has a port for saline injections. the saline is injected gradually, during several office visits later,  so that the skin is stretched gradually, ie, less pain.( that is always a  good thing ). i am looking at what the surgeon called a " minor surgical procedure", to remove the temporary " pad" and insert the permanent one when the surgeon and i decide the time is right. it will not be too long, because although i like dolly parton, well, you know....

i had a fever today, and asked my surgeon to look at the places where i had the core biopsies done. he made a face, and not a happy one. when a surgeon winces, i am thinking it must look a little bad. i do not have an infection, but the fever was from the trauma caused by the biopsy. that said, the radiologist who did the biopsy is my hero, as i mentioned. even the surgeon was impressed by her actions- stopping my lumpectomy right before it was to be done, and doing the core biopsy instead. she not only saved me from having two surgeries, but i personally think that she saved my life.

my surgeon has me on the fast track for my surgery. even so, it will be a couple of weeks or so. my general surgeon has to coordinate his schedule with the plastic surgeon's schedule . i told my surgeon that i would prefer to be at frye, but that i would take either hospital. i would like the first available, of course. i have waited about a month since my first mammogram sent me on this unexpected cancer journey. i really want to get this behind me and move on!

some of my friends and family have asked me about staging. i do not know, nor does my surgeon know at this point, what stage  cancer that i have. he said that it would all come down to if it was in my lymph nodes or not. i will not know about these until after my surgery. i will also not know if or what kind of chemotherapy/radiation that i will need. i guess another doctor- the oncologist- gets to decide this after my surgery.

i am off for the weekend. but i am planning on working a couple of days next week, unless my " spot" becomes available before then. i am trying to save most of my leave of absence from work for my "recovery days". i was pretty depressed yesterday, but today i have more information, and i feel better. this has been a roller coaster ride, or as the grateful dead so eloquently put it, a " long, strange trip,"

perhaps i should have named this blog " a series of unfortunate events" instead...

yesterday was SUPPOSED to be my surgery day. no, i did not go to the beach instead, although i will admit that i thought about doing just that. i showed up at the hospital on time, and started the pre-op procedures. the first one, of course, involved my check book.

i then went to radiology and was getting ready for the " pin placement" so that the surgeon would be able to see exactly where that darn cancerous mass is located. to my great surprise, the radiologist popped her head in the door and basically said, not so fast! she had reviewed my previous biopsy films and was very concerned about some calcifications that looked suspicious to her. the first radiologist that i had, who did the biopsy on the suspicious mass, noticed these calcifications, but he did not seem to think that they were important. (!)

my " new" radiologist told me that " she had to be able to sleep at night, and that she treated her patients as family".  she had the guts to stop the lumpectomy procedure, and she ended up doing a sterotactic biopsy instead. she took 8 samples, and she made it as painless as she could for me. up to now, i thought that a thyroid biopsy was the most painful procedure that i have ever had. this one tops that. that being said, i literally thank God that i was fortunate enough to have this particular radiologist yesterday.

my surgeon called me this morning and told me that the calcifications were indeed cancerous, and that now i have to have a mastectomy. my treatment plan is now changed, as he put it. i have an appointment with him on tuesday to go over the details. my surgery will hopefully be next week- probably on thursday. my surgeon told me that he was very happy that my radiologist had questioned the results, and acted accordingly. i know that the radiologist saved me from having to have two surgeries, but i think that she may have also saved my life.

i called the hospital because i wanted to thank the radiologist personally. she was off today, they said, but they gave me their mailing address, and i wrote her a thank you note. she must have gotten the word that i wanted to talk to her, because she called me shortly afterwards. i got to thank her over the phone, but i also sent her the note. when someone sticks their neck out for you, and i am sure that she took a little flack for calling off the surgery, that is noteworthy.

the" take away" from my story, is that patients should not be afraid to get a second opinion.i will admit that the " suspicious calcifications" was worrying me. i have had quite a bit to deal with, and i was afraid, i guess. i just thought that the first radiologist would have done what he thought was appropriate, if he felt something was wrong. i was mistaken. trust your instincts- if something feels wrong, then it probably is. get second opinions. if you do not like/trust your doctor, get another one. i know that sounds easy and i almost made a terrible mistake. if i can help someone learn from my mistake, or almost mistake, then i will be happy.

so my journey continues. i am hoping that i have no more surprises or unfortunate events ahead, but one never knows. i have wonderful support from my family and friends, and for that i am forever grateful.

for every new journey there is a beginning... mine begins today.

technically, i suppose my beginning was when i got the call back from my gynecologist's office that i needed another mammogram. the message was that they had not gotten a "good look," and needed for me to go to a diagnostic center for a 3D mammogram. wow, my breast in 3D- pretty amazing. i have gotten two other call backs, over the years,  for further studies, so i was not worried. i have dense breast tissue and calcifications, so i have to be sure to keep up with the testing. after my 3D experience, i was told i needed an ultrasound. uh-oh. i was getting worried now. the radiologist showed me the films- something looked suspicious to me, and i do not even read these for a living! irregular edges, dark shading,etc. the radiologist told me that the next  step was a biopsy. i could tell that he was worried,though, and he stopped just short of telling me that it was cancer.

i had  never had a breast biopsy before. when i had my thyroid cancer diagnosed, almost 5 years ago, i had a thyroid biopsy. it was one of the more painful things that i have had to have. instead of any numbing medication, my doctor just told me to "hold on." because of this, i guess, i was nervous and did not know what to expect. i am going to describe the breast biopsy process, as it was for me, so if anyone is about to have one done, they might know a little bit of what to expect.

first, the radiologist marked the place with a pen. everything was sterile, and he scrubbed and wore a mask and gown. there was an ultrasound technician in there and she helped guide the needles as he was doing the biopsy. the radiologist injected numbing medication, and when that took effect, he made a small incision over where he thought that my breast mass was. i was not prepared for the popping noise that the instrument used to collect the tissue made. my legs automatically jumped off of the table! although there was also a nurse in there to comfort me, and hand the radiologist his instruments, they called in another nurse to basically hold my legs down! he asked me if i needed more numbing medication and i accepted. it was mostly the noise that spooked me, but i decided pain is not my friend, and if he wanted to give me more numbing medication, bring it on. i managed to keep my legs on the table after that, and he got several samples. oh, and he also inserted a clip that will show the surgeon exactly where the cancer is. i told my son, who was rather freaked out about the whole thing, that the clip is like the micro-chip the vet inserts into your dog. if i get lost, well, they can scan me and call home! just kidding.

the area where the biopsy was taken is about the size of a nickle. o.k., maybe a quarter. it was closed up with a liquid bandage called durabond. i had durabond when i had my thyroid removed. it is a flexible bandage, way better than stitches, and it comes off in 5-7 days. if it does not come off on its own, you can remove it with vitamin e oil, or something like polysporin ointment. it will soften up and just sort of peel off. i was then given a cotton bra that fastens in the front. i had to wear it the rest of the day and night. i could shower the next day, but had to be careful not to get lotions or soaps on the biopsy site. the special bra that they gave me has been my friend. i ordered two more, similar to that one, on amazon. they are mostly cotton and snap in the front. i figure they will come in handy later. another friend of mine has been an ice pack. i had an instant ice pack for the ride home, and then i used one- 30 minutes on, 30 minutes off, for the next couple of days. the only pain medicine that i needed has been ibuprofen. some doctors only recommend tylenol. be sure to check with your doctor on which one is o.k. for you to take.

my biopsy was on this past monday. on wednesday, my husband and i met with the surgeon and he told me that i have breast cancer. i had already prepared myself for this news. i have invasive lobular breast cancer, and the mass is one centimeter in size. that is fairly small, as i understand it, for breast cancer. if the surgeon gets clear edges, and there are no lymph nodes involved ( he will biopsy those during my surgery), then i will have six weeks of five days per week radiation treatments. i will not need chemotherapy if all goes well. if i do need chemo, then i will just deal with it. lots of other people have, and i will do whatever i need to do in order to be healthy.

this is what i want women to know: I HAD NO RISK FACTORS!!. i have never smoked, breast fed both of my children, did not drink more that the occasional glass of wine, am not overweight, and have no history of breast cancer in my family ANYWHERE. my daughter told me she read that 76% of all cases have no known cause. so the important message here is that women get yearly mammograms, and keep up with the testing. do not skip a year or two and think that just because you have no risk factors you will be o.k. my surgery is going to be this coming thursday, april 16th. it is an all day adventure, but i will be going home that night. ( i told my husband that someday soon brain surgery will be same day surgery).

so i have begun my journey. i will write another blog just as soon as i am able, and relate my experiences. if you have read this, thank you for your interest. i hope i have not provided TMI, but i for one like to be informed. it like having a map when you are taking a journey. everyone needs to know where you are going. for me, that is forward.