How fortunate we are to have access to the medical resources we have

During this whole process it has been very educational about what the medical community is able to determine. What is most impressive is how rapidly tests for additional information are being developed. I have had tests that determine if I carry a genetic gene of cancer. Mine was negative. This test would have played an important part in my children's lives if positive. Ive had tests that can determine how fast the cancer cells grow. Mine are grade 1, slow growing. Ive had tests to determine if my cancer will respond to hormone treatments to help kill or lessen the cancer cells ability to grow. My cells are hormone responsive. I've had tests to determine if there were cancer cells in my blood stream. Mine were negative. I've had tests that can determine the size of my tumor and lymph node involvement. This one was not quite as accurate since it missed the size of my tumor and lymph node involvement. I've had tests that determine which of my lymph nodes was the primary filter of the toxins near my tumor which allowed the Dr.'s to take less lymph nodes then in prior years. This has allowed me to have less of a stress on my body since the lymph nodes are your gate keepers of allowing toxins into your body. With these lymph nodes, the Dr.'s can determine thru various tests cancer cell involvement that are so tiny they can only be picked up through a special dye. They can also tell with the involved lymph node (about the size of a grain of rice) where the cancer cells are inside it. There is a "front door" where you come in and a " back door" where you exit. The Dr.s can determine if the cells are near the front door, in your familyrm or heading out the back door. Mine were near the front door and in the center of my lymph node but not near my back door. I'm waiting for a test that will tell me from my cancer cells the chance of cancer reoccurring in my body elsewhere. This test is typically used for node negative people but I have insisted on this test. Why do some Dr.'s not request this when the node is positive? Because your going to have chemotherapy so the outcome of this test is a non issue. This is the side of medicine that decisions are based on facts, the cold harsh, black/white of making medical decisions. For me this test will help reassure me if my score is low, my long term survival will be greater with or without additional treatment. If my score is higher, it is a reassurance I need to fight this beast with everything the medical world has to offer. This is the emotional side to medicine which has been proven to have a huge effect on people's outcomes. I am awaiting another test that can determine if there are cancer hotspots in my body now. More then likely not since the cells in my body had not reached the back door of the lymph node But because breast cancer has some correlation with your reproductive area, this could be another area of concern for me.
The way I look at all these tests all within the past ten years has brought cancer treatment and survival rates that much higher. What we need to remember is there are treatments that are ongoing right now that are concluding after 5 or 10 years that can influence me going forward, that this information wasn't available at the beginning of these women's fight that I am now able to benefit from. And the same will be said for me, ten years from now if I have a reoccurrence, the medical world will have advanced and will be able to help me deal with this. Truly incredible. For anyone involved in research, I am truly thankful for what you have done. Their research is allowing people to live longer after being diagnosed with cancer either cancer free or allowing people to keep the beast under control. These people are allowing me to meet my long terms goals I tell myself every morning and night. Celebrate my 50th wedding anniversary and to hold every one of my newborn grandchildren. My odds are very good if not excellent because of their research.

So, my tubes are out! Did it hurt? Not really. The first one was out as quickly as I realized it was being taken out. The 2Nd one had the split second of here we go...but then it was out quickly. I'm still taking it easy since I don't want to risk any swelling. I finally will be able to take a shower without a plastic bag. Wash my pits since I am smelling very ripe. I'm looking like my cousin counterparts in Europe...haven't shaved since the 9th and it's the 29th. Can't say I remember ever going that long without shaving. I've moved into my bed but move back into my chair about 3am. I get my first in office fill of my expanded thursday. Meet with the chemotherapy teacher Friday-yikes. I can drive starting tonight-freedom! I will finally be able to go see Alex run and Grant swim at the high school. As for my oncologist, doing some research to determine if we stay. You know me and my research! Things are good and I'm happy. A positive in a negative...Mr. ComCast guy I am forever grateful for your positive look on a negative.

Comcast Cable guy from my 1st blog, you are still in my thoughts-finding a postive in a negative

There must be some type of path people follow with their emotions. Last week was not a good week for me...at all. Last week I wanted to find information about ILC. I was warned by Dr. Gottlieb before to stay on certain websites to gain information about breast cancer, well I've never been a good listener. I went into forums, other hospital websites, clinical trail result web pages, alternative medicine websites, you name it, I was there reading, researching. What was I looking for? Someone like me who had the same diagnosis. I wanted to see what they did for treatment and more importantly how long out from their original diagnosis they were. What did I succeed in doing? Scaring the crap out of myself and probably you as well! So my apologies to you. I don't want to scare you away from my blog but I want you to be my companion as I move thru this. I need your vibes to help me....your vibes must have worked because I have calmed down and I am again in control of myself.
As I did read thru the forums I did find some people like me but really no one except 1 person. Interesting enough, she has chosen the path of no treatments what so ever other then alternative medicine i.e nutrition, meditation, exercise, etc. I found it interesting reading her blog but I did gain insight into an oncologist she consulted with here in the bay area that I might be in touch with that concurred with her decision. Absolutely incredible and brave. I am not that brave or some people might say about her decision, stupid.
As I read thru the forums what became clear to me was I was lucky, very lucky. I had breast cancer in my body twice now and at this writing, prior to any further tests,  it is not in any internal organs, bones, blood, etc. This is my positive in a negative. Some of these women had the same type of cancer as me but aggressive grade, or 6 positive nodes out of 10, or non hormone receptive....what ever the case was, I realized after reading about these other women was, if I am going to have breast cancer I was better off then the next gal. I think you have to look at your diagnosis like that. I am better off then the other person. There will be someone who will be diagnosed with DCIS stage 0, 0 node involvement, hormone receptive who will look at my info that I registered for the forums and think the same, thank goodness I'm better off then she is. Please don't think of me as being selfish but I think it's simply a fact. Any form of cancer is awful and you wouldn't wish it on anyone because of the baggage that comes with it. You have to find a positive in a negative to keep going and keep your spirits up.
Sometimes it is difficult keeping positive especially when you have been handed a sheet of paper that shows your mortality percentage. Ya I know, I'm looking at with the "glass half empty" perspective instead of the "half full" perspective of an 83% over 10 years of a non reoccurence. Well, I want a big ass glass that is over flowing with 99.9%. Again it's a matter of taking my health care into my hands to find my big ass glass that is over flowing. I think I am going to find it but it is going to take time since everyone else is making appointments with the same Dr.'s looking for the same big ass glass as me.

I finally am getting my drains out today. I had to move my appt from 8:00am to 4:15. The ladies in the office are sick and couldn't be around patients so now I have to wait until the Dr. is in later in the day. I have been doing nothing to make sure the drain levels remain low. I made the mistake of doing alot of walking yesterday and it showed last night when Frank wrote my levels down.
I am working on a check list for people who are going to have a mastectomy. I figure I can help others by doing this list since I have made it thru and found out what was helpful thu this process. I will be posting it on my blog or email me if you want a copy.
I have to say, it has not been as bad as I thought it was going to be. My expanders are in place and I think I'm ahead of the process since I already have slight cleavage, very small, but at least something. I had implants before which created the space behind my muscle. The Dr. placed the expander in and has already filled it slightly. There is pressure and some pain in my arm pits. I get a sensation across my chest sometimes similar to the feeling when you sit on your leg wrong and it goes numb. My hands and arms will go numb as well but only for a few seconds. I haven't raised my hands over my head yet but I can use my hands easily to brush my hair, use the blow dryer, etc. I once again looked at myself in the mirror last night. It is not an attractive sight but I know once I get thru this I will be done and relatively whole again. A sexy lacy bra can hide anything and once your in the middle of having fun, it really is not the only thing that counts ;-)

The oncologist-15 minutes to determine my life,

Well, I'm numb. That's a fact. Met with the oncologist. What did I get out of this meeting, simply fear. Somehow it just did not feel like his suggestions were directly to me, for me but rather because you fit in this category you should do this. Being in a grey area with some of this stuff makes me wonder. You think you would automatically go with the most aggressive treatment just to be sure to get the cancer but the side effects could proof to be greater. Ya, these guys have all the fancy educations but do they really look at each individual case for more then the 15 minutes they stand outside your door reading the file before they walk in to see you? It's not reassuring when the doc says, I don't know why they scheduled you for 15 min when this should have been an hour appt...ya gee doc, I don't know why either? So, I'm going to head back in to politely demand more time. This is my life and I'm not going for a 15 min consult to lead me.
His odds for me are not what I like. Some would say very good if not excellent if I followed the most aggressive path, 83% chance in 10 years of not having a reoccurrence of cancer in my body. As the time moves forward, the percentage drops. If I don't follow all prescribed treatments the percentage can go as low as 50%. just downright scary. That 83% is not a good enough number for me so I continue searching for my answers. The doc said we have approx 3 months before not starting chemotherapy will begin to have a detrimental effect of my outcome. So the clock is ticking. I will be doing a CAT scan to see if there is cancer elsewhere in my body, so hoping that is negative. My case goes before the tumor board but then again, when my oncologist says, this is pretty much the treatment path since I'm the smartest one on the board, doesn't add to my feelings of reassurance. We have been in contact with UCSF and will meet with them as well. I will be calling to make sure plenty of time is scheduled for our questions.
As for reconstruction doc, tubes come out Friday.. I've been told I need to sit and do nothing for the next 24/36 hours. The draining has to slow down. Will be relieved to get them out. The nurse removed the bandages. I looked down but only saw black surgical incisions so I looked up and have kinda vowed not to look down again. I'm not looking forward to my first shower where I see myself in the mirror.
My feelings right now? Scared and filled with doubt as to the right choice. I still can't believe this is happening to me...maybe this is just the path people go down during this time, I don't know. I do know I need help. I will be contacting a support group.

Update: maybe it just takes time to absorb everything but doing better. Taken control of my healthcare again. Called UCSF to speak to my breast Dr. about my concerns. Called Dr. Gottlieb and will be having an appt to really go over results and what it means to my future. I again expressed my uncertainty of what my huge parameters mean to me and treatment going forward.
Bummer, the drains might have to stay in until Monday. The doc is out of town for the weekend and did not want to leave me without help if something went wrong while he was gone. So maybe tomorrow but most likely not.

My apologies and whats next.

My apologies to how I ended my blog from yesterday. I am not in a hell hole. I am far from that. There are many others that are facing a much worse scenario then I am. I simply was overcome with frustration and disappointment. I have tested positive or negative in the tests that could offer the best outcome. I've worked my way thru this map very well but to have, finally at the end or near end I receive a test result that was so important and I tested positive (which is a bad thing) with ever the smallest possible trace of cancer. What's also upsetting is that now there is not a clear path of treatment. These test results, depending on the oncologist, can be considered positive or negative nodes. It is not black and white.
So, I've done my crying and I'm back on my journey to be an active participant in my cancer fight as anyone else who is fighting this disease should be.
So, yesterday I called UCSF to get moving with our 2nd opinion as to what next. I spoke directly with our Dr.'s nurse and gave her the details. She was what a person in this journey needs, confident and knowledgable with regard to what I am to do with UCSF. She agreed on all my accounts from yesterday; Invasive Lobular Carcinoma is tricky and it is not uncommon for the tumor to be much larger then the actual size first thought. 2nd I am in a grey zone for treatment options going forward because of the negative/positive node. What did she say to me that I greatly appreciated? This cancer is very curable. She also took the lead and said I want your Dr.'s contact so we can get your pathology report. She was familiar with Dr. Gottlieb and said many patients from the East Bay were pleased with his level of care and knowledge. Very reassuring.
Before UCSF begins, they want the tumor board from here to meet and the onco test results to come back as well which usually takes 2 weeks. So here we go again, waiting.
My stage of breast cancer has now changed as well. I was so upset during my call I forgot to ask. By reading all the definitions I think I am now Stage 3 breast cancer but until I speak to the Dr. I will not have a confirmation. Scary thought isn't it?
Recovery is going well. I had what i think is the drain tube end shift inside of me because now it is poking up under my breast on a nerve or bone. I've had to jump back on the heavy duty pain killers because it hurts so bad. I did find out that the drains in me actually wrap under my skin and create a U shape under my breast to collect the fluid...think French Drain. Whats really wierd is that the tubes just enter into my body from a hole on the side of my chest-freaky!My drainage is slowing down considerably so I am hoping on Monday when I go in to have the Dr. See what is causing this pain he will take them out. By jumping back on the heavy duty pain killers it has also ruined my chances of driving starting Monday. Frank goes back to work so my companion will not be here either.
I have heard from 2 friends who have gained knowledge from my blog about breast cancer. That is great to know! I am no Dr. But if someone can gain knowledge to make an informed decision or ask a pertinent question from what I have written, fantastic!
Again my apologies on my " hell hole". I'm kicking and fighting to get away from anything close to that.

So much for the good news.

Received a call from my breast Dr with the final results or the more specialized pathology testing on the tissue and lymph nodes.
With my lymph nodes the initial testing showed negative or clear sentinel nodes. This is the typical test that is done during a mastectomy that gives a pretty reliable indication if there are cancer cells in the node. I can't remember exactly what its called. I had a sentinal node and 5 auxiliary nodes taken and tested-all negative by the path lab during the surgery.
After surgery all the nodes and tissue is sent to the pathology lab for more specialized testing. It was here that one of my centinel lymph nodes tested positive with micromastetic clusters of cancer cells. These are normally not detected unless viewed by using a procedure called immunohistochemistry My other nodes were clear. Alarming to say the least. I now fall into a highly controversial area of uncertainty of what to do next for my cancer treatment. What is remarkable is that many people would have had the first lymph node test done and that was that- your determent of your treatment was decided. This 2nd testing of the lymph nodes using the immunohistochemistry is relatively new and my results, initial negative result but now positive has thrown me into a controversial grey area in cancer treatment options.
The other bad news is and I have to say I am numb typing this, my initial indications through MRIs and ultrasounds was that my tumor was anywhere from 2.5 cm to 3cm. This was confirmed thru UCSF as well. After the pathology department finished with examining my tissue, my tumor is really 11cm. Yea, shocking.
Invasive lobular carcinoma really is the hidden breast cancer. It develops as a singular line of cancer cells then branches out like fingers and continues to spread this way. It never creates a mass so it is rarely detected my mammogram and sometimes is underestimated in size with an ultrasound and MRI. Well I'm living proof of that.
So these 2 factors have really thrown me into a grey area of cancer treatment. A tumor this size is considered huge by breast cancer standards but that there is only micromastetic cells present is even more shocking that not more nodes are involved.
I am awaiting results from another test that will determine the likely hood of cancer appearing in my body else where. This score will also guide me in my next treatment options. I might be facing a bone scan and CT scan to confirm the cancer has not spread to other parts of my body as well.
As for my reconstruction, all looks good. Had the ace bandages taken off and I'm now in the mother of all athletic bras. Still have my drains in but hoping they come out next week. The incisions did not look bad. I have the expander in already and I have cleavage. Visually it is a good thing to see.
Next week is filled with more Dr. appts and more results.
I can't describe how disappointed I am in all this news but what ya gonna do? Get educated and move forward to get out of this hell hole.

And the days of recovery roll on

Things are going well. I'm still on pain killers at night but I have moved to over the counter strength Tylenol during the day. With the painkillers, Oxcodone, I've been having some really weird dreams at night, so weird that I can't figure out if I'm in a dream or not and have found myself standing disoriented in my room. Then the dreams started happening during the day when I was napping, weird. What I've found really strange is that I'll doze off holding stuff in my hands and then I wake up still holding the stuff. It also seems as if I've been asleep for hours but I check the clock and I've been asleep maybe 10 minutes. Someone mentioned maybe it throws me into a deep REM sleep, short but deep. Don't know but odd.
I've been living in my recliner chair. It has become a love hate relationship. I look at it with contemp but after I've walked or tried laying in my bed, the feeling of being uncomfortable comes over me and I retreat to my chair. So I spend my day and my nights sitting/reclining in this chair.
When friends visit they get to visit me in my bedroom. We had the chair downstairs and there was just too much going on. I found myself getting up more often, twisting and turning to look at whichever child and simply it was loud. So I can doze off, watch TV, look at magazines in peace upstairs. It's odd for people to walk in here but once we are seated and chatting away, it doesn't matter.

The dinners and driving help we have been receiving have been a godsend. The dinners especially for Grant are important. He comes home from swim practice about 9:15pm and he has a warm hearty meal awaiting him. We all have enjoyed tasting the dinners that are not from our usual menu.I have my spread sheet on the front door so everyone can check who is driving who and what time dinner is coming and by who. I have reminders around the house "don't forget Bode" so the kids remember to let Bode of the garage in the mornings. their greatest incentive is that I am not cleaning up the garage if he has an accident, they get too!
All in all, things are going well. The ace bandages wrapped around me are more of a discomfort of being tight then hurting me otherwise. My swelling has gone down and I don't hear the liquid moving around the top of my chest area. My drainage vessels are constant and remain pinkish. I have been doing nothing but sitting, keeping arms by the side but I'm afraid I won't be getting the drains out anytime soon. I'm supposed to be down to 20cc for a 24 hour period but I'm still around 80cc per side. If the drainage is removed early, I run the risk of enema of the breast, which is swelling of this discharge fluid since it has no way of leaving my body.
I have my 1st Dr.'s appt today with my reconstruction Dr. . I might get to have the drains taken out but I do think I get my ace bandage off and will need to have a soft front opening bra with me. This will also give me my first look at what is left. Frank and I have been through a lot the last week and we have made it thru laughing and crying together. I have a feeling this may be one of our challenges seeing what is left with all the surgery incisions. As my Dr. said so straightforward, "don't be shocked by what you see" is an indication of what to expect so we are ready.

Pain management

I need to get the pain management figured out. I've done this now 3 times where things are feeling good so i try to spread the time between my Oxycondone. Not good. I must be thinking I'm more of an optimist in my recovery because I've been wrong in my judgement. The pain relief is what is holding me together. Maybe its just me (as confirmed when Frank rolls his eyes at me)that I worry about the pain pill dependency that you hear happens to people so I want to be off of them as soon as possible.
One thing is clear that to have a speedy recovery, pain management is vital. Last night was a confirmation of this thought. I took my pain relief at about 5pm. My scheduled next dose was to be at 11. I woke up at 12 after sleeping from 9pm. I felt good and thought maybe I'll just wait and see how I'm doing. 1:00 am came, still doing well. About 1:30am is when I realized I made a mistake. There was no specific spot of pain other then my entire upper body felt an intensified ache that started to make me queasy as well. Once I took my pain relief I waited the 45 min that it takes for it to kick in. My mental state at this point broke down as well. So all these points; mental stability and physical stability are tied together. Once I realized the pain was subsiding, I was able to calm down again. So, I will wait a couple more days before I try to see my pain level again because it is more important for me to stay well rested and have a sense of calm to aid me at this point.
Everything else is going well...I'm almost scared to write this! Thursday will be my followup appt to change dressings. I really have no curiosity as to what I look like. I can tell it's not going to be pretty but I'll keep thinking positive.

Sunday am follow up

Things are continuing to improve. Frank has been helping drain my vessels. My body is continuously producing liquid inside from the surgery. I am swollen and tender from up near the top of my left breast near my collar bone and all the way to the center of my chest- on both sides. Left side they removed a couple centinnel lymph nodes to check for cancer- they were negative.
Frank has been vigilant writing down the times I have take the pain killers, antibiotics, and drainage fluid levels. This is very important to do. It allows me a written record to reference since i am not all with it because of the pain killers. We stripped both tubes of the drains by slightly compressing the tubes clearing build up blockage. What a relief! I could feel the fluid building up in my chest to drain and by doing this it allowed the flow to move clearly, much relief! I am very sore in my groin area for some reason and hoping for somerelief. Doing my deep breathing exercises to keep my lungs clear. I was able to do a sponge bath on my lower body but really need to wash my hair-yuck!Once I wash my hair I know everything will be much better.
So looking down on myself there is swelling but my chest is flat-weird. The dr. warned me, don't be upset by what you see. There are still a number of appts ahead of me. He seems very pleased with his work-almost amusing listening to him complimenting himself on what great boobs he is creating! I would rather have a guy who boosts about how great his work is then some guy who is indifferent.
So still thinking positive as the body heals. Truly incredible
.

5 hours can make a big difference

So I wrote my last update 5 hours ago. Simply amazing how the human body wants te heal itself. Wasn't too sure about heading home before but I'm ready. Pain is now manageable. Usually when there is 45 min before I can take my pain killer, I'm usually in severe pain but now I'm doing ok. It will be a slow moving week of recovery but I'm so happy knowing things are going right and soon enough I'll be back to normal.

The days after

I type my blog using 1 finger since I only have access with my iPhone. The morphine after the surgery is some very strong stuff. I actually did not feel bad. Ive been texting with friends but that has now all changed. I have moved from morphine to hydrocodone in pill form. It takes longer to get pain relief now since it is not an iv drip. This is more rough then I thought. My drains are working great but I am squeesy swollen above my ace bandages. I am wrapped so right I feel like a corset. I've been urged to walk. I did and almost passed out. At night I keep the auto compression cuffs around my lower legs to keep the blood circulated. I drink lots of water and I have to practice deep breathing. Although I get to go home today it is mixed emotion and fear.
Geez how could I forget to say my lymph sentinel nodes were clear! No cancer. Maybe that's why this is all tolerable. Simply put I feel rotten.

The pink elephant and I are doing OK

I am out. I made it. Doing OK. I do seem to have a problem with the pink elephant in my room that is wearing a striped tu-tu. I might need to lower the dosage of pain meds. ;-) or not...hehehe
Talk soon.

The night before.

Well, everything is done or at least as best that I can say is done. No food or liquids after midnight tonight. I have given all my kids a kiss on the forehead and told them I love them. I gave them an extra squeezy hug too. I am about to head to bed and give my love of my life a good night kiss as well. I think I will sleep good tonight knowing that I might be escorting my uninvited guest out the door never to be seen again. Let's hope so because I have alot of other parties to attend that will not have this guest on the invite list.

Count down has started...

Today I met with the pre-op admitting at San Ramon Regional. Nothing real exciting other then the nurse showed me what the drain tubes look like, what the drainage vessels look like, and showed how they are drained-yuck! She also showed me a pain dispensing fanny pack I will wear for the first week. It will automatically dispense pain medicine. It will be hooked up to me by a tube into my surgical area. This is to help with me not using pain medicines but rather providing pain relief directly to the site. Kinda weird thinking I have tubes leading to inside my body. I will have to use extreme caution so as not to transfer bacteria into these tubes when I drain the vessels. This should all be in place up to 5-7 days after my surgery so I am aiming to have them taken out by the end of next week...cross my fingers.
I have started getting the house and kids on autopilot. Sign ups complete, bought the essentials for a household of 4 kids; toilet paper, paper towels, paper plates, and to make sure the animals don't starve, dog/cat food. I have also purchased a few clothing items to help...do you know how difficult it is to find clothing that opens in the front, that is loose, and doesn't look like something my mother would wear? Let me assure you, it is hard to find. I also need to find a support bra to wear after the bandages come off. It needs to have no underwire and must open in the front. This is proving to be very difficult to find-who knew?
Tomorrow I meet with my reconstruction surgeon for our magic marker session. I have scheduled a hair appt after to wash my hair and probably will do this again a few days after the surgery since I can not get my upper body wet. I'll pack up my overnight bag for my trip to the hospital tomorrow. The gal at check in said just pretend your going away for the weekend....I have a feeling I should probably leave my negligee and scented candle at home? Check in is at 6:00am Thursday, Surgery to start at 7:30am. Finish 6 hours later.
So, the count down begins.

My 2nd opinion at UCSF-My assurance of the right decision.

After having my 2nd opinion from UCSF I am now more convinced the treatment option I have decided upon is the right one for me. Frank and I met with a Dr. Hwang. She reviewed my files, examined my MRI and Ultrasound images, examined me and listened to our questions. After reviewing everything, her conclusion was she completely agreed on the left side mastectomy. There was a question prior to her examining my MRI about why I was not doing nipple and aerola sparing surgery-which alarmed me. After viewing the images, she agreed with my Dr.'s suggestion. The tumor as well as other areas of concern that appeared on my image, were too close to the nipple area. This confirmed my Dr.'s suggested treatment. She confirmed the size of my tumor is close to 3cm. right in there with my Dr.'s guess.
Her only question was, why do the the right side? No questionable areas present, treatment from radiation was excellent and this area would be closely monitored going forward. A healthy breast so why remove it?
Even after listening to her, I still am going to go forward with a bi lateral mastectomy. I know I do not want to live with the worry of maybe again something will appear then I have to go thru this process over again. Deep down I am a conservative person...not one to take risks and this is not a risk I am willing to take. Many women have gone thru a bilateral mastectomy and have done fine. I can do the same and be assured my risk is lowered more.
As for a confirmation of my cancer tissue she assured me after reading the lab reports that the possibility of the test being incorrect were just about nil, especially after viewing the images and such. So, no need for a confirmation on the tissue sample.
Another appt to check off the list-done.

So, tomorrow the hospital for pre-admitting.

Good for the body. Good for the soul.

Good for the body. Good for the soul. Two sentences I have said to my kids thru out their lives when making decisions.  I said look at it this way, pretend "good for the body" and "good for the soul" are on a scale, one at each end, of equal weight. The decisions you make in your life should try to keep the scale level.  Sometimes, the scale will tip when one phrase will weigh heavier against the other, but either way it is something good for you. This mess I'm in has made we realize just how important my scale is. At this point my scale has tipped heavy to the "good for the soul" with my group of friends and their support for me.

My tipped scale has made me also realize I have taken for granted friendships that I have built thru the years. When the kids were young all of us girlfriends connected every day because we needed the support of one another to get thru our day of work, crying toddlers, and other obligations. As the kids became older, we as friends met less frequent. We stopped depending on each other for help, and that's probably where I started to take my friendships for granted. Things within life started to speed up and became more consuming with my kids activities/sports. My kids and my husband were all I needed to keep me going. I started to distance myself purely by accident by not going to the morning coffees or not attending girls night out simply because I was tired or I wanted to spend time with my family. I did not make the effort.
This mess has made me realize how important these friendships are. My support system of friends and family are tipping the scale but in a good way. They are helping calm me with offers of bringing meals, carpooling my kids, walking my dog, running errands and who know's what else will come up in the next few weeks.

Having support during this time is so important. There are local support groups that help people with dealing with their cancer, the fears, impacts on their life and families. One group is the Cancer Support Group of the Bay Area. They have offices in Walnut Creek and offer programs for various subjects. I have not used their services but if my treatment options bring me to chemotherapy, I probably will.  My group of friends are my support group and have helped my soul stay calm thru this mess. However after my surgery I will need to bring my scale back to the center since some of the things I have been partaking in with my girlfriends are not good for the body,i.e. lots of wine and decadent food! I am sure there will be a balance once again with all my friends but I will never again begin to take for granted my friendships. What I also have learned thru this negative is that when the time comes that one of my friends needs help, it will help my soul to be able to offer my help and comfort them like they have done to me.

So I have less then one week left, finals pre op tests are going to be done, our chair has been delivered for me to live in for the next 2 weeks. It's so ugly modern but it grows on you. Meal and ride sign ups have been completed on a great web site called Sign Up Genius. It allows you to create a chart of days you need help, meals, rides, grocery's, or what ever else you can think of. People then enter your website and sign up for a slot. It sends them reminders too! I still need to get shirts that open in the front for sitting around. Frank suggested men's P.J. tops, roomy and comfy.  I still need to get the household set up so it kinda runs on autopilot. I am getting close to my goal but the getting Grant to the 5:45am swim/dry land workouts  will be a tricky one to figure out! If he doesn't make it, he doesn't make it. I had the best intentions but it just may not happen.

I head to UCSF today with Frank. No one has called me to observe even though it is a service that is offered. They are confirming the pathologist report so I will have answers on that as well. I have been sleeping well which I am surprised. Maybe it is just my body telling me it is exhausted and ready to get this over with. Who knows.

What I do know is there is a pastry from this absolutely luscious bakery Frank and I were at yesterday in Sonoma that is waiting for me downstairs hidden in the back of my pantry away from my kid's eyes. A cup of black coffee in my beautiful new coffee cup from my girlfriends and this pastry will be good for my soul but not exactly good for my body...but at this point it can't do any harm. What's important to me the next couple days is simply, what's good for my soul.

My 2 week window and my 6 month chocolate bar.

I'm in my 2 week window of surgery. The last time I was aware of a 2 week window was when I was pregnant! In this 2 week time period before my surgery I need to watch what I consume since some vitamins and foods ( Vitamin E, Advil, Ginko for a few) can cause problems ranging from blood thinning to who knows what else.   The 2 week time period after the surgery, I need to use caution moving around. I am not able to drive and will need to rely on others.

Yesterday I had my final Dr.'s appt. with Dr. Gottlieb. Next week I meet with Dr. Wotowic. I will have to be preadmitted to San Ramon Regional where they will do a number of blood tests and whatever else they do to get me ready for the surgery. In my appt with Dr. Gottlieb he covered exactly what to expect before, during, and after the surgery. Dr. Wotowic will meet with me the day before surgery and use his magic marker to draw on me marking the areas to help him reconstruct.

We had hoped to have been able to get into UCSF for our 2nd opinion but it is proving to be more difficult then we thought. At first the consignor service was a great concept having someone walk me thru this 2nd opinion process to make sure my files and tissue were brought to the right area and to help me move forward in this process. Our goals were simple, a confirmation of the tissue samples, confirmation of the Dr.'s diagnosis, and finally if there was something UCSF could give us insight into what was causing cancer in me and if there are any more tests we should have ordered in addition to what I have had done. The consignor person and I had a hard time catching each other by message.  Once more info was collected she referred me to another person who was to try and schedule my appt with a Dr. What we discovered was a communication breakdown. As my file was  passed down the line, not all the verbal information was given. I then received another email from someone else in the breast center at UCSF offering information videos on various types of breast cancer and treatment options. They made it clear they did not have access to my medical files so their call was simply a follow thru procedure they do with new patients. On top on that, I received another email asking for my medical background but I have no idea what office  or who this orginated with.
A couple days ago the 2nd contact person told me my tissue samples will not be sent to the pathologist unless I have been seen by a Dr. at UCSF first. This was never told to me. A confirmation of the samples was one of our goals. It also was not made clear to the 2nd contact person, that I am coming for a 2nd opinion.  Maybe this a reaffirmation that my local hospital might have better control over my files then a huge hospital and the various levels I need to go thru to get an answer. Needless to say, I'm hoping our meeting on March 7th will provide some new answers and confirmation of the diagnosis. UCSF offers a service that I am going to take advantage of. You can ask to have an observer, usually an intern who will talk with you before the meeting and type up questions I have. They will meet with me and the Dr. and keep notes as well as record our conversation. This person is there to help me keep clear and concise records of what was said to help me after the appt, keep the info correct. I think this is a great idea since I usually write medical terms down by their sound then I can't find even the slightest match when I look it up later!

So in my appt with Dr. Gottlieb he confirmed my decision, bilateral mastectomy. He mentioned the time to check in (6:30am/surgery 7:30am). No food or drink after midnight. He went into more detail of how the surgery will be performed. He will make an horizontal incision line across each breast and around the aerola and nipple. He will remove the aerola and nipple. He then explained there are 4 layers he is working with; skin, fat tissue, breast tissue, muscle tissue liner. He explained he will separate the fat tissue from the breast tissue-kinda like separating 2 slices of sandwich meet apart. As he separates, he will will be cauterizing the veins to minimize the bleeding. He explained that if he finds the right separation point the 2 tissues separate rather easily-lets hope he finds that quickly. He will remove all the breast tissue, aerola, and nipple. He will also remove a thin layer of tissue that covers my pec muscle. He explained it is similar looking to the white paper thin layer you see on pieces of meat. Again another area that cancer cells could hide.
I had asked about my scar from my lumpectomy. It possibly will be removed mainly for aesthetic reasons. Because I have no cancer on the right side, there is no possibly of cancer cells in my tissue, however people who have been diagnosed should ask about scare removal.
So, all that will be left is my skin (like an empty pocket) and this fat layer. As I explained he will also be taking lymph nodes and will be testing them for cancerous cells. If it becomes positive he will take a few more lymph nodes beyond the primary lymph nodes. He will not take all the lymph nodes out in my arm pit area like they used to do.
During the surgery I will have compression "socks" around my legs. This is to keep the blood circulating and lessen the risk of blood clotting since I will be out for about 6 hours during this surgery. I also will have begun taking antibiotics to lessen my chance of infection. I will have 2 types of antibiotics, one is a regular one they use and another one that is used for people who may have or been exposed to MRSA . After our trip last summer both Brock and Maren contracted this staph infection. MRSA is resistant to antibiotics but luckily, they responded well but the entire family had to have antibiotic soap downs with the orange liquid that you rub on wounds for over a week and we had to take antibiotic pills too! So, this is all precautionary that the Dr. has ordered this additional drug for me. I will be outfitted with some tubes that have drain vessels that will come out from each side of me. These will be in for at least a week maybe more.

After Dr. Gottlieb is done, it is Dr. Wotiwic's turn for reconstruction. I meet with him next week for the magic marker session.

So as I head to the grocery store I am more aware of the expiration dates on the things I am buying. I used to do that when I was pregnant. I would think I will have my new baby by the time this carton of milk expires-yea! Now I look at the expiration dates on items and the date is at or beyond my surgery,  a mixed sense of dread and relief come over me. I am ready to get this over with and move on.

The other day I purchased a chocolate bar that had an expiration date of 6 months from now. I'm saving it so on the expiration date, I will open it and savor it since it will mean I pasted my 6 month mark. Then I will have to find something again that expires after 6 months and start over, waiting. I think more then likely it will be chocolate because I can always wait for chocolate.