Surgery scoop...and a new development...7/30 post

Okay so here goes:
On Wednesday, I went to Dr. Dreisbach's office to check my status on blood. My red counts were low again, so they gave me a procrit shot to help with that. I generally have to be tested weekly on this. After that appointment, I went to see probably the best local surgeon for breast who everyone I know highly recommended and she was great (Dr. Ihde). I had some time in between appointments and opened up my package of mammograms that I had received back from City of Hope on Monday. I had wanted to put them in order before my visit to Dr. Ihde.
Inside, I found a report generated by the doctor who reviewed my mammograms at COH and it stated that they felt there were two more areas of suspicion that were microcalcifications (literally areas of calcium in a milk duct, of which I have a malignant area of this currently in the right breast adjacent to the tumor). There was one new area of suspicion in each breast. Okay...this was new information and came as quite a surprise because I thought that I had been looked at quite thoroughly. So...given that bit of revelatory information, it really kind of rocked my world before the doctor appointment with Dr. Ihde, and actually it was probably a God thing that I found that report when I did because it then became part of the conversation of surgery in that appointment. In sum, there are a few ways of looking at the possibilities:
First, if these new suspicious areas are benign, then I could possibly still have a lumpectomy on the right side and as well as the axillary dissection. However, I would still have to have about six weeks of radiation to that breast and there would be a significant dent-not due to the tumor but due to the fact that they would have to excise a wide area to remove the calcifications that currently exist next to the tumor. Relative to my breast size that means that In the long run, however, I would still have to have mammograms and ultrasounds likely every six months-and if I have a propensity to generate these kinds of calicifications, which are difficult to discern in my dense breast tissue, I'm not sure that it's really worth the level of concern that would persist in that case. I think I would just want to have peace of mind that the tissue was removed, i.e. double mastectomy. It's a pretty major surgery though and that's a bit daunting, and of course I'd want to do immediate reconstruction, but I don't know if I' a candidate for that since I have a lymph node involved....I need to see someone who lives eats breathes and sleeps breast to find out more specifics. Immediate reconstruction is a much longer and can be tricky surgery so it's not really done often as I understand it. It is more common to wait for a few reasons: time for tissue to heal, doctors have to coordinate with eachother, but most importantly if there are four or more lymph nodes that they find were involved after they do the axillary dissection, they I would have to have radiation in addition to the double mastectomy, and you really can't radiate successfully with an implant in place. You also have to wait for the tissue to heal so that you can do the reconstructive surgery later.
Secondly, if the new suspicious area in the right breast is malignant then there is little doubt that I have to have a mastectomy on the right. In my mind, I would elect to remove both in this case because I would want to be balanced.
Thirdly, if the calcifications in the left breast are positive, I'm not sure that lumpectomy on both sides is really a good choice. I would probably still elect a double mastectomy in this case. Though that is a big surgery-yikes. I just think it would be so nice to wake up from surgery and at least have something in place of what they're going to take. I mean, I didn't think they were that important to me until now. That being said, I want to the have the information that I need to make the best decision, and I can totally see that God is guiding me in the process of seeing different doctors to work it out. He's showing me what to do by showing me what not to do, or what direction not to go in at the moment.
That Wednesday proved to be a major shift in my thinking because I was hoping for a lumpectomy with radiation, especially since the chemo has shrunk the tumor and positive lymph node to about half of their original sizes. Dr. Ihde confirmed that each are about 1 cm at present rather than the 2 cm they were at the beginning of chemo. Hey, maybe since I'm only halfway through chemo, at that rate, they will be almost gone or hopefully all gone and just a bunch of necrosis (dead cells) at the end!!
The bummer is that, if they are virtually eliminated, I still have the issue of the DCIS (cancerous calcifications) which are unaffected by chemo. Chemo doesn't work on that kind of cancer. So, I was kind of reeling from reading that report on the way to Dr. Ihde's office wondering what the impact would be and what my next steps should be.
So, what are my next steps?

A. I have to go for a special 360 degree ultrasound called a U2 next week that will closely look at both breasts
B. I will have to have a biopsy of each of these two new sites
C. Several folks incluing my uncle have been assisting me to get in to see a surgeon at USC Norris/Lee Breast center. One of these surgeons happens to be like the godfather of breast surgery, Dr. Mel Silverstein, who has been doin this for a long time. Dr. Ihde, who is the local surgeon I saw this week recommended him as well. So, I’ll make an appointment on Monday to get into USC for a surgical consultation if I can (prayerfully....)


Speaking of surgery.....
I had surgery Friday to put in a port to make the infusions easier. It is an implant that they put in below my left collar bone and feels somewhat like a thick bobbin beneath my skin. It has a connection directly to my vein so that blood draws can be taken and drugs can be infused without the needles hurting me so much every time. Since I'll have to have infusions (the herceptin mainly which is a non chemo drug but one that fights the cancer) for a year it just seemed like the right thing to do. I was really tired of getting my hands and arms beat up every week for whatever was needed and it was pretty uncomfortable.
Anyway, they put me out and a couple of hours later or so on Friday it was in, and it hurt. I was pretty uncomfortable after I woke up and into that evening. So, they gave me some vicodin which I’ve only taken 1/2 s of when I’ve needed to. I was kind of out of it that day. Saturday I still had pain but it's less today. I have a much better range of motion, so I an tell it's getting better. Lou Sexson from school took me and picked me up and then brought me home and really took good care of me while I basically slept in the afternoon. She’s also going to be my contact person for the next week since Glynis and her kids will be in Georgia. Oh, I also found out in a roundabout way that I have to take 1 mg of coumadin every day while I have the port so that it reduces the risk of clotting. Nice. They didn't tell me that, and in fact, the nurses didn't say anything about taking the coumadin at all. It wasn't until I saw Rick Jervis this weekend that I even knew what it was...oy vey. I'm so glad I saw Rick becuase I called the surgeon that night to inquire about it and he said yes indeed I was supposed to take it. I'll add it to the list...

Speaking of Glynis, she had to come and pick me up on Saturday with my keyboard for church because I wasn't supposed to life anything over 10 lbs until I got clearance from the doctor. I also had to have her carry it in and put it on the stage, then have someone else set it up and tear it down and put it in my car for me. I probably shoudn't have done this, but I thought I could get it out of the car with my right side and I figured that if it didn't hurt, I was in good shape. Well, I managed to get itout of the car and into the house, though I'm not sure that was totally wise. Oh well.

So, thanks to Glynis I could get to church in time for rehearsals on Saturday and then I was able to drive myself on Sunday. I had a great time singing playing and serving with everyone. It was truly great. I loved what Dan spoke on this weekend, too. It was challenging.

I have chemo tomorrow and Joy is going to go with me. My sister got sick and I told her that I didn't want her to be around if she had some kind of viral infection, so she'll come for the next round on 8/21. I'm not sure what the effects will be from this other type of chemo drug. We'll see...I'll keep you "posted." Ha ha....I love puns

Any input you have for me about the decision to "double" or not to "double" you are welcome to email me at: jbloch@dc.rr.com
or just post a comment.

Blessings,
Julie

Update 7/24

Hi all,
Well yesterday I was feeling great so I went to the gym. While I was there, I saw Elli Tourje and that was great to talk to her. Later on in the day, someone had gifted me with a massage at Spa Las Palmas so I went and it was fantastic! Afterwards my body was mush so I picked up something to eat, dropped by Lou and Dave Sexson's house to pick up some things that they graciously offered to get for me at Costco, and headed home to crash. It's kind of funny becuase at first the spa said that they wouldn't work on me without a doctor's note. Their logic was that they didn't want to stir up the cancer cells. That, to me, sounded totally crazy. I mean, I'm going through chemo, so let's flush them out of their hiding place so they can be killed. Get 'em! So, I procured a prescription from my doc last week so that I was good to go. I did feel a bit chemo-ey after the massage which surprised me, and wasn't so fun. Perhaps along with the cancer cells being stirred up, all of the toxins from the chemo were as well. Anyway, I had planned nothing after the massage so that allowed me to just come home and read a bit then crash. I am a bit tired today, so I didn't go to the gym like I did yesterday but that's okay..I'll go tomorrow.
Tomorrow I'll also go to get bloodwork done to check on my red counts. I have to go weekly now to check these levels since they were so low last time. They gave me a procrit shot to help boost them but it doesn't kick in for 2-3 weeks. So, I'm taking iron daily to try to help that somewhat.
Tomorrow I will also see a surgeon in the valley to consult about the type of surgery I might have after I'm finished with chemo in October. I'm interested in hearing the input. At this point, I'm not pursuing the surgical option at City of Hope because I don't feel that the surgeon I consulted with there is specialized enough in breast. In addition, he didn't return any of my follow up questions from my original visit. Thus, I'd like to find someone who lives breathes eats and sleeps breast for consultation. I will likely check out the Revlon Breast Center at UCLA, as Dr. Peter Schulz recommended, for a second opinion. I'll let you all know what the surgeon I see tomorrow says. I've heard very good things about this local doc, but as analytical as I am, I want to know the pros and cons of all of the options so that I can weigh them to come up with the best decision. It will likely prove helpful for me to talk to people my age who have chosen a double mastectomy with reconstruction to hear about their decision making process (since everyone's cancer is a bit different scenario) and about the reconstruction process. If I were to go this route, I'd like to do immediate reconstruction rather than waiting. Of course, that depends upon whether or not they feel that radiation is necessarily going to be a part of the therapy if I do decided on the "double." If so, then you have to wait until the tissue heals, etc. Even without the radiation factor, some docs still like the tissue to heal before doing reconstruction. Thus, the necessity of seeking a place of surgery where they do this often and have seen all different permutations of this kind of an operation in younger women as opposed to older women, since age is a factor in recurrence and recovery.

I'm good to go for the port surgery on Friday. Lou is going to take me and pick me up since I'll be out of it. I'm glad she's going to do this :-)

Last week was really great because, for those of you who live out of the area, it was around 125-125 on Thursday or Friday of last week = yuk. I had a chance to go to Orange County for a couple of days and it was great. Even went to California Adventure and Disneyland. So much fun!!! It was even warm there, though.

The next round of chemo is the 31st, this coming Monday. My sister Jenni is coming this Sunday night and will be here until Wed or Thurs. morning :-)
That's all for now :-)
Bless you,
Julie

Update for 7/20-the rest of chemo #4/port and other

Well, contrary to my last post, the second day of chemo proved to be really tough. Despite the mega anti nausea cocktail I had going, it was my worst bout of nausea yet on day #2 and #3. My mom told me later I actually looked green but she didn't tell me that at the time (thank God). By day #4 however I wasn't feeling nauseated anymore, just fatigued, so I didn't participate in Saturday night worship that night. The funny thing is that last Saturday night I woke up about 3am and could not go back to sleep. After three or four days of sleeping you can imagine this, right? Anyway, Dan had asked me to sing that Sunday morning and I was amping to do something so sure enough I showed up, even though I had called him on Saturday saying that I didn't think I could do it. What a joy it was to worship on Sunday morning and serve in that way. It was really great to sing with Elli and Andrea and Dan and Scott since I haven't sung with them in a while. It was nice just to be together. Jenna, Elli's daughter really helped me out, too, since that morning I left to go to church without my vitamins or thyroid medication (I'm hypo a bit so I have to take it). She went to my house and brought it-twice- the first time my mom had put only half the dosage in this cute little plastic bag rather than giving me the whole bottle. It was funny and I am so grateful to Jenna. Otherwise I definitely wouldn't have had the stamina to do even one service. Lisa Hughes also blessed me since she had this incredible spread of food for us on Sunday morning and that really saved me as well. After three days of not really eating, and finally being really hungry and just knowing I had to eat to survive it was so great to have some wonderful and nutritious stuff for us that morning. Wow. Bless you all!!
I met with Dr. Luke on Monday and discusssed with him that I'd like to get a port put in so that I don't have to get stuck so many times. I really really have a problem with those 1 inch needels being put in my veins for chemo and I'll have to do it for a year on Herceptin, not to mention the blood draws that I have to have done regularly, too. He was supportive. So, Tuesday I went to see Dr. Peter Shulz and he agreed to put a port in even though I haven't decided what I'm going to do about surgery. This is fairly remarkable because I didn't think he would do it since I don't have a surgeon or surgical procedure decided upon yet. He did tell me he thought that wa sa bit unusual. I'll take that as a compliment. I am going to start looking at surgeons again: one in the valley and one out of the valley. At this point, I'm not happy with City of Hope becuase I've asked some follow up questions regarding some of the surgical variables and they haven't gotten back to me. In addition, Dr. Wagman who I saw there is not a breast specialist, even though he has done a lot of breast surgeries. I really want to see someone who is immersed in the breast world for thier opinion given my age and situation. Really the tricky part is whether or not they can actually do a lumpectomy on me because the two cancerous sites are adjacent to one another, so breast conservation, even if the tumor is significantly reduced or altogether blasted by the chemo to only be scar tissue, may not be an option. I need time, however to consider the ramifications personally of either doing a lumpectomy versus a single or double mastectomy with reconstruction as well as chew through the data and studies on everything. My analytical nature is this way, so I'm grateful that I have the time of chemo to do this.
So, I have a pre-op appointment this morning at Eisenhower for the port surgery, which will be next Friday, the 28th.
Meanwhile, this week, I've had to take naps every day in the middle of the day just to survive becuase as my labe results revealed yesterday, my red blood cell counts were all low. Boy do I feel it. It's kind of a strange feeling really. Your body just doesn't get up and go like it normally does, and no wonder since I've been blasting it with poison every other week for the last eight weeks. So, they gave me a procrit shot which really won't kick in for about two to three weeks. Bummer. So, in the meantime I'm taking some iron supplements to help as well as my vitamins etc., and sleeping when I need to. I guess I'm not superwoman. Oh well. I'll have to have bloodwork every week to check up and see how I'm doing (another reason to get the port-yes!!). I'm a little nervouse about the port surgery even though it's minor becuase I've never really had surgery before, so I don't know what it's like. I'm told they'll give me some "happy" medication and a local before they insert the port implant. In a nutshell, the port is a line into a vein so that they blood can be easily accessible. I'd rather thave a small scar subclavically than veins that are trashed from being poked. So there.
Oh there was a funny ordeal with my mom's departure that I'll talk about in my next post (thanks Debbi!!) and a I saw Rick Jervis this past Monday to remove a suspicious nevi from the palm of my hand. Excitement!

That's all for now.
Love you,
Julie

Update for 7/12 Chemo #4 today /BRCA test results/church last Sunday

Well, I've tried a new anti-nausea medication on this round of adriamycin/cytoxin. It's called emend and I also have to take decadron with it. These two are in addition to the Aloxyi that they put in my IV before they pumped in the chemo. So far, it seems to be working pretty well, so I'm glad about that. Each one of these drugs works on a different brain receptor so it's like using the full army of anti-nausea drugs on my body. I was hesitant to do it for fear of dealing with other side effects that might be unkown. At this point, I'm soooo glad that I did it and I have Tim Tyler to thank hugely for the suggestion that I do it. The result is, it's now about three hours after the infusion and I don't feel that bad. I wouldn't say that I'm totally operational, but at least this time I don't feel like my head weighs 30 pounds and I can actually just veg in front of the tv for a bit. I'm so glad! I even ate some pizza for dinner. I'll continue to take it for the next three days with hopefully the same or better results!

In other news...the BRCA mutation testing that I had done showed that is was NEGATIVE- YES!!! Thank you all so much for praying. What's funny is that I sort of just knew it would be. You know how you just know things in your "knower?" Well, sometimes that just happens with me, so I attribute that to God who searches all things. So, let me explain this breifly for those of you that aren't acquainted with what it is and what the result indicates. BRCA stands for breast cancer mutation. There are two genes that have been isolated and found to be highly correlated with the incidence of breast cancer. Furthermore, the mutation is noticeably more present in those with Ashkenazi Jewish background (1 in 40). Since my genetic pedigree if you will is 75% Ashkenazi Jew, and having an incidence of breast cancer so young, I wanted to do it in order to see if I would need to remove both breasts and also have my ovaries and uterus removed (high correlation between breast and ovarian cancer that is also heightened by being BRCA positive). So, the fact that I do not have the mutation means less risk for my family members and surgery-wise for me, means that I'll probably have only a lumpectomy. The surgical choices are still a little up in the air only because I need to have an additional consult and see if it's possible since the tumor site is more or less adjacent to the site of DCIS (slightly different cancer that will not be affected by the chemo) in the breast. The big question is can the chemo shrink the tumor to the point where the surgeon can just do a lumpectomy, or relative to the size of my breast do they have to do a mastectomy. So, that will be the next variable to determine at this point. I'll have to provide more info about this when I talk to both the surgeon and a radiation oncologist. It is possible that, even if I elected to do a mastectomy or double mastectomy I would still need radiation due to the aggressive nature of the cancer, but I'll wait to see what s/he says. Of course, it would be great if surgery wasn't necessary, even for the lymph node dissection. Eric is believing that I won't need surgery. I hope so, and that would be truly amazing.

My mom (Marti) is here for a week so that's great to have her help, especially while I'm sitting in the chair for the poking and infusion. It really helps to have a distraction during that time where they're pushing red stuff into your veins (sorry to be so graphic, but that's the way it is) or have a hand to squeeze while they're inserting the needle into your hand. Ouch. I really really don't like that part. So.....I'm thinking seriously about having a "port" put in so that it's much easier to draw blood and infuse drugs without poking me every time for blood draws. Since I'll have to take herceptin every three weeks for a year (virtually no side effects from that) and I'll begin that with my next chemo. I was talking with the nurses and it just seems like that's a good idea-especailly since I really don't like the needle insertion process. It is a big needle and it really hurts. It's not like your regular blood draw kind of thing. Okay, maybe I'm a wimp but thinking about being stuck for infusions alone at least 17 times in the next year seems compelling enough to do that. Basically the port is a line into a vein that they surgically plant sub-cutaneously (under the skin) that provides easy access to your blood supply. I'd have to go in for a small surgical procedure, but I think with drugs that would be fine. At this point, being poked is not something I want to be doing that many times. It may have a little bump under the skin, but I'm fine with that-especially if it avoids the ouch factor. So, I'll probably go to see Dr. Shulz (Peter) since he was the one I saw initially for a surgical consult before I even had all of the data in, so he has some familiarity with the case and he is also at Eisnhower. I also like that he takes out the stitches himself, very proprietary. I like that in a surgeon. Anyway, having only wisdom tooth surgery in the past, I'm not too excited about it but if it avoids the "pick a winner" vein approach, I'm up for it!

In other news...Some of you might not have known this but I had a lock box in my flower bed so that friends could come and go and I wouldn't have to get up to get the door if I couldn't on my bad chemo days, etc., but for some reason pooof! It disappeared....after a little freakishness about this in my head, Debbie suggested she just come over and spend the night and we asked IPD to drive by as well. So she did, and they did and the next day, I got the locks changed, so I'm good now :-). Weird. I just thank God for his protection and for great friends.

This past weekend I loved being able to sing and play with my band, Surrender, at Video Cafe and even Siren. Scotty joined us, too for VC. I wasn't sure how I would do with singing Saturday night, and then serving in worship sunday morning and evening but God sustained me and gave me such great joy and inspiration becuase people were sharing how it was inspiring them. Wow the joy of the Lord truly is our strength! Plus, it's a way that I can still give back during this time and it feels good to give like that and just sense the Holy spirit working in it. It was great to be together and serve. I also was grateful for the opportunity to sing Joy Williams' "The Love of the Lord Endures" (from her "By surprise" CD-great song) at the end of the service although I missed my cue for the 11 oclock service at the end and accidentally kept Rick waiting...he was gracious :-). It was really a privilege. It always is a privilege and at the same time a weighty responsibility to serve others in worship becuase you want a help and not a hindrance. I love those times where you sense that everyone in the santuary is one team togeher and there is that sense of all of us together instead of some of us on the stage and some in the congregation because that's what it truly is-all of us together pressing on towards the prize :-)
Sunday night at Siren I wore a scarf on my head rather than my wig and it was fun becuase James DiBari also wore a do-rag. He also happens to be a cancer survivor and continues to percuss despite a shoulder that plagues him. The funny part was that we could have been called the three bald guys and two mexicans...I love those guys!

Hope this finds you well! Bless you all!
Julie

Update for 7/6

Well, today I went in for a blood draw to make sure that I was okay in that department. My red blood cells, hemoglobin were low, but they didn't give me a procrit shot becuase they feel that it will bounce back up by next Wednesday when I have my chemo again. I definitely felt more sluggish today and now I know why. Guess I'll have to get back into the steak routine I was in. I had a big plate of sauteed spinach this afternoon and just picked up some iron pills. That ought to do it. One other strange thing is that the inside of my mouth feels really funny, like the top layer of skin isn't a part of me or something. It's just odd. It's also a little awkward to swallow. This is called mucositis anyway, and it just means that the cells are not replenishing fast enough because I'm doing this dose dense approach to chemo, so I'm not allowing my body to rejuvinate at its normal rate-which also attacks any fast growing cancer cells. So, I'll deal with it. It's a small price to pay :-)

I spoke with Tim Tyler on Saturday night this past week at church and he told me about another anti-nausea drug called emend that they use at Desert with patients who have problems with nausea due to chemo. So, I asked about it today when I was there and they said that I have to take decadron (a steroid that keeps you awake) with it. These two would be on top of the Iloxy that they gave me last time and the compozine that I'll take as needed. I really feel reluctant to take all of this high powered stuff. I mean, each one works on a different brain receptor for nausea but it makes me a little nervous to be taking all of that and have to deal with the chemo, too. I'm thinking that I might be okay dealing with a little bit of nausea and just having two drugs in my system rather than four plus the chemo. Yikes.
I think I'm going to call Tim and talk it over with him a little bit before and also talk to Rick. If any of you have experience with this, please let me know. I want to make a good decision, but I have to get the decadron prescription filled before I go on Wednesday. So, let me know before then.

I went out of town for a few days and it was great to get away and to be out of the heat. It even rained. I went to a ball game and saw a fireworks display and it was really fun. I also got to see my brother and Eric :-). One of the funny things wass that, Skip and Linda Osgood picked me up from the airport and I just had to crack up becuase each one of us had some kind of medical condition, yet they were carrying my luggage. Incredible. Luckily, they have handicapped parking privileges so that was nice. Then, I came home and my house had been cleaned by Amy Haven and Kristin and Debbie Geyer and it was sooo nice to come home to a clean house. You can't imagine what a blessing that was! Wow! I basically ate lunch and then crashed for a bit, then worked on a chart for church and then had to rush off to band practice which was really a lot of fun for all of us. I'm looking forward to Sunday Video Cafe service for sure. Saturday, too. I'm so glad that I can still do all ofthis. Unfortunately I won't be able to do the worship for Jacob's Well on Monday, but Elli Tourje is going to be able to do it, so that's great.

Today, all I did was relax, catch up on some e-mails, do some laundry, go to the doctor and take a nap. That was it. Oh, I almost forgot, I stopped by the McIntrye's on the way back from the doctor and she had this bag of goodies from Bath & body works. So, thanks to she and Dee James, I'm now going to be smelling some great candles at home and using some nice smelling moisturizer. During this time, it's just nice to have some uplifting fragrant stuff. That was so sweet. I'm looking forward to it :-)

It felt good but almost a little guilty to do practically nothing today, but I honestly didn't have the energy to do anything else...Oh well, just took an iron pill so tomorrow I should be back in the game I hope...

Hope this update finds all of you doing very well!
Julie