Reconstruction

I survived my first "pump up" appointment. My sister was here to drive me over. I was very apprehensive. I really don't like needles very much. And this was a very big one! When I walked into the examining room and glanced at it I almost left. Then decided my best course of action was to avoid it so I grabbed a magazine and stuck my face in it. The expanders which were placed between the skin and muscle and the chest wall are made of plastic except for a little round rubber piece. This is about the size of a quarter and is where the doctor injects the saline. There must be some sort of metal in there too. She used a magnet tied to a string to find the spot where the rubber is located. It reminded me of some 2nd grade science experiment. It did work as she could then use her fingers to figure out where to put the needle. I told her she better have a good joke to tell me while I looked away at a picture on the wall. I am kind of like Harrison Ford and snakes but for me it's the needles. She said to start counting the poppies in the picture on the wall. I told she had to do better than that. It takes quite a few minutes to inject the saline. So I got to hear all about her new rescue puppy. I had been told to find a plastic surgeon that I really liked as I was going to be spending lots of time with her. I will be having injections almost weekly. This week she only did one breast. At the time of surgery she had put in some saline but intentionally had not injected as much on the cancer side. So she had to even things out during this appointment. It wasn't as bad as I had imagined. Not fun by any means. But by the time this is over I will know her whole life story.

I took some drugs right after I got in the car (don't worry my sister was in charge of driving) and came home directly to my favorite spot on the couch. It feel like I took a step backward in terms of tenderness and mobility but that should go away in a day or two. She compares it getting your braces tightened. But I don't think you get your braces tightened every week - do you? 

My sister took me on an outing to the market. And then I actually made it to book club last night to talk about "The 19th Wife". They welcomed me with tender hugs, a glass of wine and told me I looked great. Love my book club!

Also went to the PACE office over at Jesuit a few days ago to train them on some of the computer stuff for the auction. They, too, gave me a wonderful welcome. They all know that my schedule is not going to allow me to spend much time, if any, in there to help. They have some very capable women who will do just fine. Everything is right on track so far. I miss being there. It's never a dull moment. 

I don't watch much TV, but of my top 4 shows three are about hospitals. "House", "Grey's Anatomy" and "ER". "Lost" is the only one without needles. I might need to switch things up a bit. My reality is too much about hospitals, medicine and needles. Maybe I will watch "American Idol" this season... or "Project Runway". And catch up on some chick flicks that Mark won't watch with me. Cheers~ and let's all do a rain dance so we don't have a drought.

Scrabble Scribble

TRIVIAL STUFF

I have finished "The 19th Wife", "Cancer on $5 a Day" and "The Middle Place". If you have never seen the author, Kelly Corrigan's You-tube about transitions and transcending follow this link. Although she is younger than most of us, you can relate to pretty much everything that she says. But if you don't want to cry (again) don't watch it now, save it for later. I was first sent this link last fall before all this chaos started, but one of you recently sent it to me again. Kelly Corrigan could be a FIN... she has FINs.

http://www.youtube.com/watch?v=u_4qwVLqt9Q

I am now reading "My Life in France" by Julia Child (did you know that she didn't know a thing about cooking until she was married and moved to Paris?) and another book about Paris "The Elegance of the Hedgehog". I did play Scrabble for the first time in years with my Mother when she was here. She doesn't really play and between the aging mind of a 78 year old and my drug induced ideas of how to spell words we cheated and used the dictionary a lot. But it was still tons of fun and I plan to play again. 

Speaking of FINs my sister was so excited to tell me that there is a restaurant in town called "Fins"... Of course I knew that... but it sparked an idea for a celebration down the road! It took me a long time to go back to figure out where the FINs idea came from. Of course I was heavily sedated when all of your emails where flying back and forth during my surgery. My brother-in-law could not believe how many emails where coming to his blackberry while in the waiting room with Mark. Somehow I left Mark off the distribution list?? But as Todd shared some of your messages with his wife, Clare, and Mark I think it was both amusing and comforting to them. Particularly the part about having a second or third glass of wine... For those of you who missed it here is the history. At some point that night my friend Kathy Shadburn-Butler posed the question about what the group supporting Jaime should be named and here is the reply from Cindy Dunning Jakle. (Cindy I hope you don't mind...)

When a hot flash woke me up in the night, my mind began to ponder Kathy's question "What shall we call ourselves?" It occured to me how very often women step up for one another, especially in times of need. While it is not as fun as when we were making dinners for each other while so many of us were having babies, I know we are all serving on "committees" now for aging neighbors, ailing husbands, and sometimes our own.  I thought of us a GODesses, Girls on Demand. But I liked FINs better, Friends in Need. Fins keep the fish moving forward and help to keep it afloat. Today we are Jaime's fins, and in the course of things we will all need fins. The membership will morph depending on our connections, but right now I feel great comfort in simply being a part of a community of women that rallies when a friend is in need. We really don't need a name, but I did want to say it is comforting to read the list and to be a part of such love and solidarity! Cindy Dunning Jakle

Kathy, Cindy and I were all pregnant with what were Kathy and my first babies and Cindy's third baby at the same time. We sat on Junior League committees together (with our big bellies hitting the conference table) planning ways to help Sacramento's women and children. Now those babies are sophomores in college planning majors and semesters abroad. Here we are, the Moms, years later still planning ways to help... Another positive part of this journey has been reconnecting with friends both here is Sacramento but also from high school and college. I have had wonderful conversations with friends after only exchanging Christmas cards for years. And as you all know, you can just pick up the conversation where you left off, even if you haven't spoken for what seems like eons. What I have discovered over the years is that our lives are very similar, even if you live if Chatham, New Jersey or Pacifica, California. And so thanks to all my FINs. Couldn't do it without you!

Love the rain, we need it so desperately. Don't let it get you down. Just think of how green it will make our California hills and your own backyard come springtime. Cheers!

TRUTHS

When you get right down to it, the truth is that perky breasts, loosing my hair, and the fact that I might miss out on many things over the next few months aren't that important to me. What I want more than anything is to be around for the future. I want to watch my son graduate from college and find a career he is passionate about. I want to be there when he says his vows "to love you in sickness and in health" and to hold my grandchildren. I want to climb big mountains in Italy with Mark, drink margaritas with him while my toes play in the sand, take long walks along the American River with our dog and watch the hawks fly high. I want to share morning cups of coffee and discuss the world news. I want to continue to be there as my nephews and nieces grow up. I want to be there to help my Mom and in-laws as they grow old. I want to go to family reunions in Yosemite and hang out at Donner Lake. I want to celebrate your 80th Birthdays with each of you! I think you get my drift.

And that is what the next phase is all about. It's about keeping the cancer from returning. We met with the Medical Oncologist, Dr. Rohatgi on Thursday. He asked me tons of questions about my health. He was so very patient with both Mark and I as we asked for clarification on just about everything he said. And he even had a sense of humor. Lucky us to have found another doctor we really like! Without too much detail I will try to give you a summary of our meeting. Without doing any further treatments I have about a 25% chance of the cancer reoccurring somewhere else in my body. If I take the chemo pill, Tamoxifen, for 5 years that brings the rate down to about 16%. If I take a course of chemotherapy - four treatments, three weeks apart then it can bring the chance for reoccurance down to around 10-11%. He said that no one every gets it lower than about 5%. So, going from 25% to about 11% sounds really good to me. All these statistics come from a database called Adjuvant. The scientists have been studying the tumors and keeping stats since the 80s. (Yes, I think they keep all those breast tumors stored somewhere indefinitely so they can continue to do different studies on them.) One thing to keep in mind is that the chemo "cocktails" have improved a lot since then so in reality the chances for the cancer returning might be even lower. (Do you think it's fair to describe chemo as a "cocktail"?) And the other silver lining... the side effects are not as bad as they used to be. Yes, he told me I would loose my hair. But most don't feel the nausea and other things so much. I have recently spoken with two friends who have just finished chemo and didn't have such a hard time with it. (Maybe they were lying like my frisbee/tupperware friends.. but I don't think so.) 

So I think that I will be starting chemo in about 3 weeks. BUT there is one more test that the doctor just ordered on my tumors. It is a fairly new test called Onocotype DX. In a nutshell, this test identifies which types of breast cancers benefit from chemo treatment. This test looks at a group of 21 genes of my tumor and based on that gives my tumor a reoccurance score which determines if I will benefit from chemo. If you are curious and want to know more please go to this website. I can't say that I clearly understand it. I do know that you can't have lymph node involvement and need to be estrogen-receptor-positive in order to qualify for the test. I know is that it takes two weeks to get the results back. So, we wait again. But they wouldn't start chemo right now anyway as I still get more time to recover from my surgery.

http://www.oncotypedx.com/PatientCaregiver/OncoOverview.aspx?Sid=1 (This is the page with the overview.)

We also met with the Radiation Oncologist on Wednesday. A friend from my ski club who has recently finished her breast cancer treatments was a patient of Dr. Ryu and told me all about her before our first meeting. Needless to say, we thought she was great. She is also a big skier so we have much in common. She says I am in a bit of a "grey area" when it comes to radiation treatment. I don't fit into any neat little box that says yes or no. Radiation is done to make sure that all the cancer cells were removed from the area during surgery. I had that tumor that grew into the muscle, but they got clean margins. I had another tumor and a "mass of stuff" in between. There could be a few cells floating around in there. Basically she said that she tends to be conservative when ordering radiation. Doesn't do it unless she feels strongly about it. However, she said she would be "offering  me radiation". I said "offering? is that like offering me a cookie or a piece of cheesecake?". She laughed. But she will be "offering" me radiation and I will most likely "accept her offer". It wouldn't happen until after chemo is done. And then it would be every weekday for 5 weeks in a row. No skipping! It doesn't take long to get the zap of radiation. But you have to go every day. Doesn't that sound fun? 

It's a lot to take in. And even though I try to make my blog upbeat, I do cry. And when Mark asks what he can do I say "Please make it go away". And of course that probably makes him feel worse as this one is out of his control. 

I am blessed for the following reasons: 

I have wonderful family and group of FINS!

Modern medicine can do so much for me.

I have such an incredible team of doctors and nurses on my side.

I am healthy (except for this cancer stuff).

I will recover and put this behind me. 

I could go on and on...

By the way, two friends answered my rhetorical question. I am now a Breast Cancer Survivor... over three weeks now. Those two friends are also Breast Cancer Survivors. Get your mammograms! 

Frisbee or Tupperware

There are two blog followers who have had breast reconstructive surgery. One describes it as having a really hard frisbee in your breast and the other said it was like a tupperware lid. Try to imagine this, but the frisbee/tupperware has slid up to the wrong place and there is nothing you can do to get it to feel like it fits right. And it's the wrong size, way too small. What I really think is that although neither of you told me how uncomfortable this was going to be... maybe it's like childbirth and you just forgot. You got great breasts and great babies out of the process so it was worth it. The nurse told me my muscles would be "angry" with these plastic expanders. Angry is not a strong enough adjective... pissed off is better? Why don't some of you word smiths try to come up with some adjectives for me. Let's make a contest out of it. I will think of some silly prize for the winner. I did go to the Plastic Surgeon this week but she will not do the first expansion until next week. I am healing very well and ready to start doing some arm exercises (minimal). She said some patients like to take a little valium before they come in for the "pump up"... that makes me think I am not going to be happy.

In the meantime there has been progress. Katy was really worried about my legs getting hairy, so they have been shaved. But more importantly I was able to wash my own hair today!!! So my arm mobility is definitely improving. The styling didn't look so great but I will get there. I can also get a hair clip in by myself now so I don't need Mark to keep trying to get the scrunchies in. 

Mary took me out to run a few mundane errands like buying printer ink and paper at Office Max, going to the ATM machine and buying a case of Chardonnay (that was the priority). We literally drank every bottle in the house prior to my surgery so we needed to stock up. Not that I feel like drinking much now, but it's nice to have a few sips. But getting out to do something other than go to a doctor's appointment makes me feel like I can face the world again. It was nice to get out and do normal things. 

I really enjoy the jokes, stories and photos that you have all been emailing to me. 

Here is a link to some very artful looking bras... http://www.quiltersofsc.org/artfullbras/artfullbras.htm

Some people are really creative!!

Special Visitor

Although I have loved every visit from every one of my friends and family this one was rather special. Calvin came home for the first time since I was diagnosed with cancer. We have had many conversations (one very tearful) on the phone and have done the video conference thing - Skype - numerous times but a real hug makes all the difference in the world. He and his girlfriend, Molly, made Mark and I a very tasty dinner and I didn't have to do a thing but sit on the couch and chat. It was the best!!! 

Mark, Jaime and Calvin "LIVE STRONG"

Next Challenge

Almost forgot to add this... my next biggest challenge. I haven't shaved my legs in over 2 1/2 weeks. That is going to take me a while. I might have to do it in different shifts!!! Things could be worse. At least it's winter and no one notices.

Slow Afternoons

I am still experiencing more pain and tightness most afternoons. One of the nurses said that sometime the nerve endings are damaged during the surgery. Now they are waking up again and are more efficient at transmitting that pain to me... not a very medical explanation but very feasible. And really not very nice. I am most comfortable on the couch for the second half of the day. I am reading a few different books. Don't usually do that but seems to be working for me. One is for my Book Club "The 19th Wife" and it's an historical/modern day novel about polygamy. Then "Cancer on $5.00 a day". This is written by a comedian who had cancer. There are some very funny parts, some great advise and some serious parts. Definitely am glad to be reading it but sometimes it hits too close to home. Then I have Kelly Corrigan's "The Middle Place" which is another book about cancer. Seems to be the topic these days. Rhetorical question for you all - "Do I still have breast cancer if they cut it all out of me during surgery?"

It's something I think about. 

I watched some of the bike races yesterday from the couch. Mark went down and got to see the time trials close up and loved it. I believe it was great for him to get out and do something fun. We all know this is hard on the caregiver too. With all your help, he seems to be hanging in there. 

My Sister brought her new puppy to visit - Ollie

Doctor Visit

I think it's been a stressful few days. My body felt worse yesterday than it has in a while and really I had been feeling pretty good. I used one of those things you heat up in the microwave to wrap around my neck along with my drugs to finally get comfortable. Getting the drains out was great. 

I spent quite a bit of time over the past few days trying to figure out if the doctors I had been referred to were actually part of my insurance plan. I was assigned a case manager at the insurance company to help me through this illness and I think I knew more about how to get things done than she did. But all turned out fine, the radiologist and oncologist are both in my plan. My surgeon was able to help me get in sooner than March 11th which was wonderful. I now have three appointments next week. On Tuesday my first "pump up" appointment with the plastic surgeon. I think that is self-explanatory. Then Wednesday I see the Radiologist. He will recommend a radiation plan. On Thursday I see the Oncologist. Finally - I might know about what's next. It is driving me crazy not being able to plan. I want to have a plan for  my treatment and I want to make plans for doing other fun things like vacations, etc. 

My appointment yesterday with the cancer surgeon went well. I am healing fine. Still can't drive until I stop taking the drugs. Not ready to wean myself totally yet. We got the final pathology report. We had already been told no cancer in the lymph nodes which was what we had all been praying for and the final report confirms they are clean. The tumors (3 of them) were 2 CM each. On of the tumors grew into the chest  muscle. They got clean margins which is good. The doctor put in markers so that when/if radiation is ordered they know where the tumor was. Growing into the muscle is not really a good thing. Getting it all out with clean margins is a good thing. We shall see what the docs say next week.

Not sure if everyone knew I had a bilateral mastectomy. From the beginning I thought I would do this, it seems to be the trend. On so many different levels it seems to make sense. The chances (according to my doc) are about 20-30% that you will get cancer in the other breast. Up until the day before surgery I was doing both breasts. And then on that Tuesday I started questioning this decision. The MRI and mammogram on my right breast all showed it was fine. I had conversations with a number of my doctors, friends, husband, sister, etc. about what to do. Of course no one will tell you what to do. The doc said I didn't have to decide until they rolled me into surgery. It was rather an agonizing day for me but in the end I was back to my original decision and VERY certain that was what I wanted to do. It turns out that the pathology report we just got back showed pre-cancerous sections of the right breast. I did make the right decision most certainly. The pathology report confirmed it! And of course we all know that now both of my breasts will be perky when I'm 80. Not so perky right now... not much there and very sore but the future looks good!

Love all your prayers, support, emails and love. 

No More Drains

Not much more to say except that the three drains were removed this morning. I no longer feel like an alien. And I don't have them making me look like I have funny growths around my stomach. It didn't hurt a bit. The very small wounds should just close up on their own. Life if good today!

The thin tube drains into this bulb

Status

Just a little update. I walked around the block twice yesterday! Slowly, not setting any records but it felt good to be out. I can fold laundry (very exciting!), empty some of the things out of the dishwasher but still can't reach very high. That's okay Mark is taking on the task of doing dishes with enthusiasm! 

My hair stylist, Casey, washed my hair again. And I can take showers so I almost feel human. However I still have these drains coming out of my armpits which actually make me look kind of like an alien. The thin tubes drain into a big bulb which Dr. Mark empties regularly. Some of you have been curious about the drains so I took a picture. I have three drains which empty into three different bulbs. They are to help get the fluid out from the area of where they removed the lymph nodes. I have an appointment to get them (drains) removed tomorrow... I hope it really happens. The three bulbs hang right around my stomach and make me look like I have a big belly... which I do not have! 

I sleep fairly well at night due to the drugs. I think it was my  Nurse Mary who said "better living through chemistry" is okay and I agree. I have to sleep propped up. I have an elaborate system set up with a reading pillow, then a softer pillow in front, a small roll pillow under my neck and then small pillows to support each arm. Isn't that ridiculous. I barely move except for slipping down a bit. Sometimes the arm pillow falls off and I find my dog using it as a pillow. He is usually very willing to give it back. But before I go to bed I make Mark put yet another pillow on my stomach so that I can prop up a book. It's our big joke. I read for about 3o seconds and then he comes back in and removes the book and pillow as I am usually fast asleep.

Each and every meal you have all delivered has been wonderful and healthy. Mark feels a bit guilty about receiving all this attention. I asked him what he would be cooking for us if our friends weren't doing it ... He no longer feels guilty, just very appreciative. But you are all a hard act to follow. I may have to take some cooking lessons... at a minimum I might have to get a few recipes from you. Thank you! 

Progress

Dr. Mark thinks the mobility in my right arm is really improving. He is probably right. I still can't reach up very far but am making progress. Pam H. told me I am trying to do too much and she is also probably right. I am tired. So I am going to try to lay down  for a bit each afternoon. I know my body needs rest. These expanders that are part of my reconstruction are very bothersome to say the least. But its been a week since my surgery and I have come a long way. I could hardly get out of bed a week ago! 

My sister is here (you remember - the one with the dirty house) and she rubbed my feet for at least an hour last night. Also made her do laundry, dishes, etc. She just started a new job and Sacramento is part of her territory so she is here to work too! This is the first time I have seen her since this whole ordeal began so we needed some quality time. 

Not only have I learned to Blog but I have also learned how to use my iPod. I know I am really behind some of you in this, but I know there are a few of you out there who still don't have iPods. So Calvin gave me an iPod nano in blue for Christmas. Before he returned to school he taught me how to load individual songs. I had 3 songs loaded and then the roller coaster started. A number of friends told me that the iPod saved them in the hospital. So the night before my surgery Calvin talked me through how to load a CD and podcasts. I went to NPR to download some of their programs. No snickering... but Car Talk (which used to be called Click and Clack?) makes me laugh. My Dad used to listen to it religiously. So I downloaded three Car Talk Podcasts. While we had some down time before I went to nuclear medicine, I was laughing to myself as Mark read the newspaper. Of course the good news is now I know how to download to my iPod. The other good news is it really eased the tension that morning, the valium helped too of course! 

Sunshine

It's been a very busy day. I had an appointment with my friend Casey to wash my hair. And we successfully figured out a way to do it with my head bent over into the bathtub while she used the hand sprayer to shampoo and condition. Didn't really know why I need that hand sprayer until now. It worked great. Then Casey set me up in my favorite chair for a blow dry and style. After a week of putting it back in the scrunchie this was a big improvement! Plus, even though Mark has been doing a tremendous job taking care of me, hair styling is not one of his strong points. I have had to talk him through it. Putting in a scrunchie for an attorney is just overwhelming. He will have to keep practicing until I can reach my hands over my head.

Took a slow, short walk down the block ... would have made it to the corner but ran into Karen  so stopped to chat. It felt great to get out. Beautiful day!

I saw Dr. Hackert (plastic surgeon) yesterday. She is in charge of monitoring my wounds. She said everything looks good, almost better than expected. Next week I can have the drains taken out. I have an appointment with Dr. Eaker (cancer surgeon) next week for followup with ... not sure what. Although I have referrals with other doctors no appointments yet. My left side seems to be healing much faster than my right. Doesn't make sense to me as the cancer was in the left so that is where they took out muscle and more lymph nodes. But I am healing lopsidedly (is that a word?). I have to eat with left hand and do more typing with left. Can't reach my arms over my shoulders yet but can lift light objects.

(Side note... to my english major friends... if I don't get all the grammar and spelling right, no criticizing allowed. Remember I am on drugs!)

One story from surgery. I had to go to nuclear medicine before surgery where they put in the radioactive dye which eventually leads to the sentinel

lymph nodes. (A sentinel node is the first lymph a tumor drains into. So, it’s the first place that cancer is likely to spread. And they are different for each of us.) These will be the nodes they remove first during surgery to test for cancer. Anyway, not at all a comfortable procedure, but my friend, Carol Michael, who joined the cancer club three years ago really wanted to be there with me and my wonderful nurse Mary was there too. We excused Mark, he couldn't stand watching them hurt me. But the point is that while this procedure was going on we were all talking about Loretto closing ( for those not in town they announced that this Catholic girls school was closing in May for good). Nurse Mary's daughter had gone through Catholic schools her whole life and of course is connected with this group. It turns out that Mary has a daughter who is a Freshman at USF and her daughter, Jacqueline, knows Calvin's girlfriend Molly. Small world??  

Was also very lucky and so happy to have Winnie Gaines from Trinity Cathedral with me prior to surgery for a prayer, love and support. (Winnie is my sister-in-law Clare's mother and I have known her forever.) Again, you have all been so incredible. It's too hard still for me to respond to all your notes, calls, emails and gifts but I will get there. Hopefully soon.

Love you all!

Dr Dean Edell

We have 8 tickets to see Dr. Dean on Tuesday at 8pm at the Community Center. He can be rather entertaining. 4 seats in row H and 4 in row U. If you want one, two, four or all eight please email me. 

Home Sweet Home

Dr. Mark is doing an incredible job taking care of me. My only complaint is when he won't give me my pain meds soon enough. He has charts to deep track of how much fluid is draining from my wounds, charts to keep track of when I took my last meds and charts to track my every move. I did sleep fairly well considering. I have never been big on taking lots of drugs but the valium is a muscle relaxant and is very helpful. My muscles are "very angry" with me right now. My nurse Mary told me that would be the case. The expanders (they are part of the reconstructive process) create a lot of pressure and they had to remove some muscle to get rid of one of the tumors. They ended up putting in AlloDerm in to replace the muscle they had to remove. Complicated but worth it. I am a bit groggy and don't remember everything but do know the whole staff at Sutter were wonderful to me.   I know it was a very long day for Mark. His brother Todd and wife Clare were there until I finally got to my room at about 11:30. A single room thankfully! Then there was all this stuff about the "fins". I haven't had a chance to read up on that yet... but I have plenty of time - not going anywhere. I do feel better every day. Although not my finest photo, I don't look too bad. I seem to have enough energy to boss both my Mom and Mark around. My right side hurts a lot more than my left - must have overdone it - so am typing with left hand. I hope you are all having fun watching the Super Bowl. I can't wait to see Bruce!