Tuesday, December 26, 2006
Chemo Sucks
December 26, 2006
Hi Everyone,
You know why people are afraid of chemo? Because they should be. I had my first chemo on the 19th and honest to God if I never had to go back again I wouldn’t. As a matter of fact, J.R. might just have to knock me out, throw me in the car and drag my unconscious body into the Dr.’s office for the second cycle. Breaking my neck was a cake walk compared to anything I have endured during this ordeal.
If you are queasy or do not want to know what chemo is like, you should probably stop reading this installment. Or if you’ve had chemo and do not want to relive it, stop reading. We have set up a blog, the address is http://jensbreastcancerfight.blogspot.com/. It’s a work in progress but we will add things every few days.
Lastly, for those who are reading on, I apologize for the lengthy e-mail and for those who are not, thank you for your support and love; it means the world to me.
Alright, here goes. I had chemo on the 19th of this month. We showed up at the office and everyone is just really nice there, so that was helpful. I was so very emotional and numb at the same time because I just wasn’t sure how I felt about this whole experience. I was scared, I was pissed, I was sad, I was in total disbelief that I still had the hardest part of my battle to deal with and that made me very angry.
Tracy was my nurse, she has been very helpful to us even before chemo started. She got J.R. squared away with my schedule, my meds and any questions we had before I started. Again, J.R. has been taking care of everything for me, pretty much I show up some where when he tells me to, everything else he has already done for me.
So I go back to the room and there must be 10 – 15 lounge chairs lined up. There are a couple of beds for the really, really sick and a desk for the nurses. The room is kind of a semi circle in shape. Each chair has a curtain that can be pulled around it for privacy and there is a little kitchen area for snacks. I sit in my chair and Tracy pretty much gets to work on me. As you know, I had a port placed in my chest so I can receive chemo without damaging my veins. It’s in my upper left chest and is under the skin. You can’t see it but you can see the bump. It’s basically a big rubber stopper of sorts that leads into a vein in my heart. My heart then pumps the chemo through my body. I had a heart test to gauge a base line so that during chemo they can assess how much, if any, damage will be to the artery. I will get 2 or 3 more heart tests throughout chemo.
Tracy starts getting my IV started through the port, as you know I hate needles and again, here we go with the needles and I’m not even there 5 minutes. She takes my first round of “Labs”, which is blood work and then flushes the IV with saline. I hate the saline, it’s gross. After that I met with my Dr. and we reviewed my pathology report from the mastectomy. I can’t tell you how it feels to look at a report with your name in bold at the top. I cried as soon as I saw it, even though the report was favorable. This can’t be happening, it’s so surreal.
My physician, Dr. Bowers, is a nice lady and gave me a hug when she came in the room. We like her for that. She said that the first day is always the hardest. I find that hard to believe, I think they will all be hard. We reviewed the report and she let me know that I will be having 8 cycles of chemo, 4 cycles of two drugs and 4 cycles of another. I’ll get to the drugs in a moment. That news made me sadder than I already was. After that, we moved back into the chair room. There was a part of me that wanted to run out of there and another that just wanted to get this shit over with.
Tracy reviewed the whole process, the drugs and the side effects with us and answered questions before we got started. So here goes. You will not believe the amount of drugs they pump into my body.
Through the IV, I get a mixed cocktail of anti nausea drugs which consist of Kytril, Corticosteroids (Prednisone, Decadron and Cortisone) and Cimetidine. What does this stuff do?
Kytril – prevents and treats nausea and vomiting.
Corticosteroids – reduce inflammation, swelling, treats allergic reactions, and controls nausea.
Cimetidine – treats duodenal and gastric ulcers, acid reflux disease, heart burn and is a histamine H2 blocker. Whatever the hell that means.
Listen to the fabulous side effects from these drugs. And this is the stuff before chemo even starts!
0. Headaches, weakness, constipation or diarrhea. Or? Can someone please give me an indication of which one of these I may experience? Dizziness, drowsiness and fever. But wait that’s just the side effects of Kytril.
0. Insomnia, increased energy, fluid retention, weight gain, increased appetite, stomach irritation, mood swings and irregular menstrual cycles, which is BS because that sucker showed up right on time. That’s the effects of Corticosteroids.
0. Itching or hives, swelling of the face and hands, (because looking like the lion lady is just what I was looking for this week), swelling or tingling in the mouth or throat, bloody or black tarry stool, vomiting blood or material that looks like coffee grounds. Are they kidding me with the coffee grounds? Yellowing of the skin, fabulous, and unusual bruising. So if I look like I’ve had an ass kicking lately don’t worry, it’s the Cimetidine that’s the culprit.
This terrific cocktail is in an IV drip which I get throughout the whole chemo injection process. During the first 4 cycles of chemo I get 2 different drugs. Adriamycin and Cytoxan. Each takes about 30 minutes to administer. What do these drugs do?
Adriamycin – is an anti cancer drug that stops cell growth and division. A little vague I know.
Cytoxan – is an anti cancer drug that stops cell growth and division. ????? I don’t get it. Same description, I want this to say something different but it just won’t. I want one of these to sound meaner like it’s going to really kick cancers ass.
And here are the side effects of these drugs.
0. Nausea, vomiting, loss of appetite, hair loss, red urine, mouth sores and lowered white blood cell count. Due to various medications, I have had some funky colors of urine, bright yellow, green, orange, and blue, but never red. Red is weird because it is really red. These are the effects of Adriamycin.
0. Nausea, vomiting, loss of appetite, hair loss, lowered white blood cell count, metallic taste / odor and nasal congestion during treatment. This is the grossest part, the smell. It lasts for days and I don’t care what they tell you. I smell it even today and that’s because that smell will be burned into my memory forever. And the “nasal congestion during treatment”, that’s bullshit; it’s more like nasal burning during treatment. This I also get water retention, mouth sores, darkening of the skin or nails and a cough. These are the effects of Cytoxan.
Sounds pleasant so far huh? All this I find out before I’m even injected. I was about to walk out the door and take my chances that surgery did the job. So Tracy comes back with 3 huge syringes with red liquid in them, and actually says the sentence “See, they look just like red Kool Aid.” J.R. followed that up with, “Yeah, that’s what Jim Jones said.” If I wasn’t in such a foul mood I would have thought that pretty damn funny. In any case, apparently Adriamycin can not be given via IV bag, it has to be slowly injected into the IV by the nurse. I just couldn’t look, I wrote in my journal instead. After that I got the Cytoxan IV bag. At the end my nose was really burning and I just wanted to get out of there. I felt fine and wanted to leave. Tracy had reviewed with us what to do with the anti nausea drugs after the fact and we went and had lunch. I felt pretty good except for the metallic taste from the Cytoxan.
When we got home I went right back to work, I felt fine and was in a pretty good mood. We were told that I should not have any reaction to the chemo for about a day or so. That was not the case. About 6:30 pm I started to feel worse than I have ever felt in my whole life. Imagine the worst hangover you’ve ever had, the “I drank crappy booze or had too many shots” kind of hangover, the kind that lasts all day hangover. Make gravity 10 times stronger, add the flu with a fever and that awful metallic taste and smell. This is where you start praying to die. Now, just so you can truly appreciate my misery, you feel like total crap, nothing has ever prepared you for this, you don’t want to move but you have to pee, a lot. I have never peed so many times in my whole life, but at least I didn’t feel like getting up. And, as if that’s not bad enough, my surgery and expanders prevents me from curling up in the fetal position, I have to lie on my back. This is pure hell, in every sense. I just re-read my description and I just can’t give you an accurate enough picture of what chemo feels like. I honestly hope none of you ever have to experience it. It really is worse than what I describe.
By morning I felt much better, so much so that I was up, had breakfast and was back at work by 8:30. But for about 12 hours I have never felt worse in my life.
The anti nausea drugs that I take are as follows: Kytril, Compazine and Ativan. Kytril is the main drug and I take that for 3 days straight. This stuff is expensive. Target messed up on our insurance and when we went to pick up 10 Kytril pills, they cost $700. For 10 pills. Does anyone else think that’s bullshit? In any case they got it squared away and we paid our co-pay instead. Our instructions for managing the nausea were as follows, and I quote, “Take Kytril twice a day 12 hours apart. If you feel nauseous, then take the Compazine every 3- 6 hours, if that isn’t managing the nausea, take 1-2 Ativan every 3 hours or as needed.” And when asked about the Percocet that I take once or twice a day for pain, they said no problem, take what you need. I swear I am going to need a 12 step program to dry out from all of the drugs.
And as if all of that is not enough for you, the day after chemo I had to go back to the place that made me feel so crappy and get another shot. This time it was for Neulasta. It’s a drug that helps the bone marrow make new white blood cells to prevent infections if my resistance to infection is low due to chemo. Oh, for those who do not know, don’t be offended if we ask you if you are sick before we visit, I can not be around any one who is or has been around other sick people until this is over. If I get sick my chemo can and will be postponed until I can fight off infection and I do not want to drag this out any longer than it needs to be. So bear with me.
Anyway, we pulled into the parking lot and I swear I bust into tears. I could barely make myself get out of the car and go get that damn shot. J.R. had to give me a pep talk just to open the car door. When we went into the chair room, Mary, another nurse, very nice by the way, asked me how I did. We told her how bad I felt the night before and she was sad for me because I shouldn’t have felt that bad. I asked her if I could get up and walk out and never come back and she said yes. I almost did.
So the Neulasta shot, get this, it is an injection and you will never guess where they give it to you. The port? Don’t I wish. They give it to you in the back of the upper arm. Are you kidding me? They can’t come up with a spot better than that? But wait, it gets even better if you can imagine that, first they grab and squeeze a spot in the back of your upper arm and then they inject you. And it burns. But at least the major side effect is pain in the bones, specifically if you have arthritis, previously broken bones or degenerative disks. Hey great! I have all of those! So now I get to add Ibuprofen to the drug mix. J.R. had to make up an Excel spreadsheet to keep track of the drugs.
I am feeling better now; the nausea after the second day was very manageable but still unpleasant. As a matter of fact, nothing about this whole experience has been pleasant in any way shape or form. Please do not reply back for me to look on the bright side of things and tell me that I get to live. I get that. I get to live, for that I am very grateful to live in a world where modern medicine is so good and that we live in a country where it is so readily available, it’s just that everything getting me to the “I’m going to live” part really sucks. Sorry, was all that out loud?
On the bright side, we had a wonderful Christmas and as I am typing this I am enjoying a glass of red wine, God does it taste good too. So that’s my story. I have 7 more chemo sessions to go. My last scheduled cycle, pending any illness or really low white blood cell count is March 29th. Mark it down because that will be a day of celebration for me. Sorry again for the lengthy e-mail, there was just a lot of info this time. Thank you for listening and for your prayers and support.
Love to you all,
Jen
December 17, 2006 Jen Update - Post Mastectomy
12/17/06
Hi Everyone,
Let me just start out thanking you for the outpouring of warm wishes, prayers, cards and get well gifts, I really appreciate your efforts to keep my spirits high. I just love you all for that. J.R. has been taking such good care of me I think I may be getting spoiled. He has not left my side and has taken care of everything for me. I’m claiming greatest husband on the planet status for him. Honestly I could type up three pages of “above and beyond” stories just in the last two weeks.
I am doing really well these days. Obviously I’d prefer to not have to go through any of this but in the grand scheme of things I couldn’t ask for a better result. J.R. did a great job of getting everyone up to speed on my hospital stay so I won’t bore you with any additional details from that, other than asking if anyone happened to get the license plate number of the truck that mowed me over. Anyone? No? Oh well, it was worth a shot.
I have not been this flat since the 5th grade and oddly enough I am not entirely hating it. The bra thing is over rated so I am not missing that one bit. 12 hours in an under wire bra is about a toss up to this. I am still in a bit of pain, as you can imagine, this does not heal over night, and just when you get used to it, it’s time for a fill up.
So what have I been doing the last two weeks? Well I’ve taken quite a few pain pills, and those who know me well know that I can’t stand pain pills. They make me slobber. That and Starburst candy, I’m a slobbering idiot. But I have to say in this case they have been my best friends. I blew right through the Oxycodone and am now taking Percocet, which is the same thing but with Tylenol. I didn’t know that before. I’m taking one maybe two pills a day now, which is good. God knows I have enough issues without adding drug addiction to the mix. I have been sleeping quite well, which my body really needs. The cats love it because I am an easy target to snuggle with. J.R. likes it too for the same reason. : )
I’ve been eating a lot of soft foods too, again the pain pills make that necessary for me. It coats my stomach and helps with the nausea they cause me. I realize that I will make a really good elderly person because I like soft foods, I don’t mind eating at 4 pm and I can be entertained by game shows and HGTV for hours. So I am not so afraid of getting old now.
This week was pretty interesting, I went in for my first “fill up” on Weds. I was scared at first because they inject the solution through a needle through the chest muscle. Again I really, really, really hate needles. So I walk into the room and on a table is a big syringe with a long tube and a needle on the end. There are some bandages and a device that looked like something from a Harry Potter movie. This device was a stick about 8” long, had two circles on the end and a little moving bobber deal in the middle. So a stick with a circle in a circle and a bobber in the middle, and they swiveled within each other. Can you picture it? Oh, and it was black plastic. Plastic? ???
Anyway, if you remember from my past e-mail that there are magnetic discs in my expanders, then this will make sense. So the Harry Potter dealio gets moved back and forth over my breast and the bobber thing points right to the magnet in the expander. It is the weirdest thing to watch, it’s like the metal detector of breast implants. Once this point is found the Dr. marks me with a Sharpie. Then I close my eyes, squeeze J.R.’s hand and pray it doesn’t hurt. It wasn’t so bad, but it felt really strange. The goal is to add 50 cc’s to each side every 1 ½ - 2 weeks, whatever I can handle. So I got the 50 cc’s in the left side and then she did the right. It was way tighter on the right so she took out 10 cc’s. Again, it felt really strange because I could feel it get less tight.
So for all the smart asses out there, which cover most of you, yes, my boobs are two different sizes right now. Just in case anyone is wondering, expanders are very uncomfortable. They are hard as hell, ride high and are slightly under the arm pit so it feels very unnatural. Ladies, you know when you’re wearing really cute but uncomfortable shoes and you can’t wait to get home and take them off? It feels the same uncomfortable way on my chest but I can’t get them off. So that’s frustrating. And they hurt. It’s like when someone is rubbing your arm while watching t.v. and all of a sudden you realize it doesn’t feel good anymore and your skin feels raw. It feels like that on the underside of the muscle, so there isn’t anything you can do about it.
I’ve been having more issues on the right side than the left which I can’t quite understand. My range of motion on the right is not as good as the left and it’s tighter and more sore on the right. Go figure. I started physical therapy on Friday. Basically I was sent home with a pulley deal which I attach to a door and raise and lower my arms. It has helped and my range is getting better. My P.T., Jason, told me to cut my self a break, I guess people don’t go in for P.T. for several more weeks or months after a mastectomy. I don’t think the medical staff quite appreciates how limited my patience level for this kind of thing is. I want to heal faster and get my range of motion back.
After the physical therapy session we went to visit my oncologist and I saw where I will be taking chemo. There were so many women in there it was heart breaking. Oddly enough everyone seemed to be in a good mood. I guess we looked like the new kids at school because I had two women give me their numbers and told me to call them with questions. I start chemo on Tuesday and am scheduled for 4 cycles so far. They will each be two weeks apart. I am not sure what to expect from chemo but don’t worry, you will find out as soon as I do what it’s like.
I am going back to work tomorrow, Monday the 18th and am really excited to get 2007 business rolling. 2006 has gone by so quickly that I can not believe it. We have started a blog but it’s still a work in progress so when we are ready to publish, we’ll get you the info. In the meantime, my e-mail account is the best way to communicate with me.
Well that’s it for now, thank you again for everyone’s support, I am so lucky to have you all in my life.
Love to you all!
Jen
Wednesday, December 6, 2006
First Entry and the whole story so far.
Since we started this Blog two months into Jen's fight, this first posting will be rather long. If you are new to Jen's fight, this will catch you up.
Jen has been updating our many friends and family via e-mail, but we thought this might be an alternative for people to keep updated and in touch. - J.R.
Jen was diagnosed with Breast Cancer on October 8, 2006
Here is her story so far:
October 11, 2006 Cancer news
Hi Everyone,
OK, most of you know that I have recently been diagnosed with breast cancer, fortunately we caught it at an early stage and the prognosis looks very good. I am sending out a mass e-mail so I can keep everyone on the same page at the same time. If you reply back to this, and I would love to hear from you at any time, please do not reply to all, that will just be annoying to everyone else on the list.
OK, here goes. I had the mammograms, ultra sounds and more mammograms on the 5th of this month which led the physicians to look at a mass a bit closer. At first they thought it was a cyst and did the needle test, which was not fun I can guarantee you. Unfortunately they did not get the result they were looking for, which was fluid. So next we did the core test. Let me just say that the core test really sucks and if you have to have one, get your iPod out and take a Friend because you are going to need someone’s hand to hold and will want to be anywhere else on the planet. Without going into a bunch of gory details, they essentially took 6 samples of the mass through what looked like a McDonald's drinking straw.
So we waited over the weekend, thankfully, thanks to those who were around by the way, it was a fun weekend, when the call we were dreading came during the Steeler's game. The game was going to hell anyway so I was already in a crummy mood. Let me say, there is no way to prepare yourself for the words, "The tests results are back and you have tested positive for breast cancer." You can't even imagine how many questions come to mind, including, what is the next step?
So the next step is meeting with a general surgeon and an oncologist. And fortunately the medical facility has a role of Clinical Nurse Specialist Patient Care Coordinator. Trust me, you want this person to call you as soon as possible. Margaret is her name and she has been great, reviewing test results and what they mean and getting me set up with the best physician's Dictaphone's insurance can buy. And she said I can call if I need a shoulder to cry on, this woman was sent straight from heaven.
So we met with both physician's today and here is what I know for certain:
The mass is 1.2 cm, more than likely I am in Stage 1 and it is grade 2, which is a slow growing cancer. You don't want grade 3, that is fast growing. The type of cancer is Invasive Ductile with Lobbular traits. This means that it is a solid mass that may have little cancer fingers spraying outside of the original mass, but they won't know for certain until surgery. They feel very positive that it is still contained. I am Estrogen and progesterone receptor positive, which sounds bad but is actually a good thing according to everyone I've talked to. What that means is that the cancer is fed by the estrogen in my body. Since that is the case, they can use hormone therapy to fight cancer cells that may still be present and just waiting to turn into a pain in the ass later.
I am scheduled for surgery on Oct. 27th at Ridges hospital at 10:30am. They are planning a wire localized lumpectomy and sentinel node biopsy with possible axillary node dissection. What the hell does that mean? Well, they are going to take the mass and a couple of lymph nodes that the breast drains into. If there is no cancer in the lymph nodes, then that is great, they leave the rest alone. If you can believe it, this is an out patient operation. If they take all of the nodes, then I get to stay over night. I will be tested beforehand by MRI, chest x-ray, bone scan, blood work and tumor markers to see if there may be cancer any where else in my body.
What can I expect after surgery? Well, the recovery time is practically nothing, which is why I'm doing it on a Friday. I'll be back to work on Monday and total recovery time should be about 3 weeks. Based on what the results are from surgery, I may either go into chemo or radiation. The only reason for chemo is this, the size of the mass, over 1 cm, and my age, 40, so they would want to treat this fairly aggressively since I am considered young. And I know that I am because I got carded at the Cheesecake Factory when I ordered a glass of wine last night. If they decide that chemo is unnecessary, then I would have 6 1/2 weeks of radiation therapy. In either case, chemo or no chemo, radiation therapy will be necessary. After that, I get to go on hormone therapy for 5 years. Lucky JR, we may get to save money on feminine products but at least we'll be washing sweaty clothes more often. And apparently Mary won't be visiting me at our house in the wintertime.
So that is what I know so far, I probably gave you all way more info than you needed or wanted but hey, I'd rather write it all down and then when I get to see you all later, we can talk about something other than cancer.
Thank you all for your warm comments, thoughts, prayers and offers for help, I appreciate it all and would not be able to get through any of this without you all. I feel really good about the prognosis and short of not getting cancer at all, I guess this is the one to get if you're going to get it. So, since it is breast cancer awareness month, girls, go get checked out. If you need mammogram practice, ask your honey's to drive the car over your breasts while laying on the garage floor, it's about the same thing.
So thank you all for listening, I love you all and hope that you are having a great day today! Don't go changing on me!
Jen
PS. if you see that I have forgotten someone on the list, please forward this message to them and ask them to reply to me so I can include them on future messages and add them to my address book.
October 16, 2006 MRI Story
Hi Everyone,
This isn’t so much an update but a story that I think will entertain you. As you know from my last e-mail, I was to have an MRI to see if there was any more cancer lingering in places that we do not want it. My appointment was on Monday morning, we’re still waiting for results but I just have to tell you about the experience.
Now let me preface the story that J.R. was out of town, otherwise I would not have done this myself. But, since girls can do anything, I thought it was a good idea to lift the kitty litter bucket and take it down stairs. Not so much. I pulled my back out when I was setting it down. Now most of you have seen me after I’ve thrown my back out and know that it makes my butt stick out. So I’m walking around the house like Mrs. Wiggins from the Carroll Burnett Show, and I’m in a fair amount of pain. So on Monday morning I took my usual dose of Advil but I also took a muscle relaxer thinking that I would head to the chiropractor afterwards.
Somehow I managed to get myself in the car and made it to the hospital. As I was checking in and filling out my paperwork, the muscle relaxer finally kicked in. So I’m looking at the pen in my hand and I was thinking, “What a pretty flower they’ve taped to this pen!” The guy sitting across from me must have thought I was a mental patient because he moved over to the furthest row of chairs from me, which made me laugh and probably didn’t help his assessment of me.
So I go back, get in my “robes” and get an IV in my arm for something they call “contrast”. They take pictures without contrast and then with, so they can get a better picture of the mass. It’s some blue liquid deal and no, it does not turn your pee blue. The nurse and I go into the MRI room and she has to stick some yellow things on my boobs so they can keep the left / right pictures straight. The yellow things look like one of those new dishwasher liquid packets with the yellow liquid thing from a construction level in the middle of it. Kinda puffy like with the level in the middle. Are you with me? K. So they look good and are rather comfy.
So we go over to the machine, and she tells me that I have to lay face down for the MRI. I look at this contraption and I see a place for my face to rest, like when you get a massage, only smaller, a place for my arms to lie, above my head and something that looks like two 7-11 Big Gulp cup holders, and I realize that’s where my boobs with the levels are going.
So she tells me to climb aboard and I’m thinking to myself, “Is she kidding me? My back is killing me and I can’t bend my arms to hoist myself up because of the IV and I’m a little messed up from the muscle relaxer.” But what the hell, I’m up for the challenge.
Somehow we managed to get me in position and I am thanking God that neither J.R. nor Sue are there because they’d be laughing their asses off at me. So to get a mental picture of my position I’m laying face down, on an angle. My arms are straight over my head like when you teach kids to first dive in the pool, they make the V shape with their arms, and my face is in the circle deal, thankfully with a sheet that keeps my eyes closed to keep from seeing the horror of it all, and my knees are bent and my boobs are hanging down into the cup holders.
As if my dignity wasn’t already in jeopardy, she tells me that she needs to put ear plugs in my ears because it gets loud in there. OK. So I can’t see anything but she tells me she’s going to put them in and all of a sudden she just sticks them in there. Rather aggressively. Just so you know what it’s like, when you get home tonight, sit down, close your eyes and ask someone in your house to stick something in your ear. It’s pretty creepy. So then she starts saying more stuff but since I have the earplugs in, I can’t hear a damn thing she is saying. Maybe she should have finished the instructions beforehand. I thought I heard something like, “And I’m just going to make a couple of adjustments.” Next thing I know, she’s reaching underneath the cup holders and starts fiddling with my boobs. To say I was surprised is an understatement and even though you know it’s coming, you’re never truly prepared for this one. Especially when you’re in such a vulnerable position.
After the fiddling, she sticks some squeeze ball in my hand in case I freak out and need to stop the procedure; I almost squeezed it right then. Then she hooked me up to the “contrast” and wraps the cord around my finger. Next thing I know, me, the levels and the cup holders head feet first into the MRI. So I’m in the MRI and she’s talking to me through this speaker, which oddly enough sounds like Charlie Brown’s teacher. All I hear is blah blah blah, blah blah, blah blah blah.
In case you have not been in an MRI recently, there are some new sounds you should be aware of. We start out with a little drumming, specifically John Bonham playing the bongos during his solo on Moby Dick. So I’m cool with that, I can hang with the bongos. There is some clicking and then I get this sound that I thought someone was saying something to me. Play along with me, in a low monotone voice say out loud DOT DOT DOT DOT DOT DOT DOT DOT DOT real fast. If you go for about 2 minutes and follow it up with the bongos again, it’s actually pretty catchy. If I were more creative I think I could have come up with a top 40 hit. There are more bongos, clicking and banging and then a totally new voice introduces it’s self. In a higher tone I hear, Do It Do It Do It Do It Do It Do It Do It. If I were suicidal I WOULD DO IT! Who at the MRI manufacturer approved that one?
After about 20 minutes in this embarrassing position my arms finally fall asleep. Terrific. That bulb I’m supposed to squeeze if I want to stop the MRI, not so much, I can’t feel it, nor do I have the strength to squeeze it. I’m finally getting into the DOT DOT DOT Do It Do It Do It bongo medley when I hear Blah, blah, blah, contrast, blah, blah, blah.
You know when you go on a roller coaster ride and you get to the top of a really big hill and as you go over you think, “Holy shit! I don’t think I can do thiiiiiiisssss!” Well, inject contrast into your system and it’s a lot like that. Apparently "contrast” doesn’t like muscle relaxers very much. I’m thinking to myself, “What if I faint! I may roll out of the cup holders and get jammed into the MRI with my levels? Don’t faint! Don’t faint! Don’t faint!” I didn’t faint. “Don’t puke either!” I didn’t, I think I slobbered though. Not sure if it was the “contrast” or the muscle relaxers, oh well, I think we’ve established that my dignity was already gone. A few more bongos, clicking and DOT DOT DOT’s and I was done. Thank God this humiliation is coming to an end.
Not by a long shot. Getting out of the MRI with arms you can’t feel or use and a bad back is a whole new level of humiliation. Floppy arms, red ringed face, “I’m gonna faint” drool and exposed boobs with yellow levels for all the world to see, was a lovely scene. I’m glad they didn’t have mirrors in there or I would have been truly horrifed. The only thing that would have made it worse is if I was incontinent too. I’m sure I looked like a drugged up beached whale as she was trying to roll me out of the cup holders and onto the gurney. Although I would have preferred my dignity I was satisfied to get my circulation back. I went back to the room to change and realized that I still had to take the levels off. Let me just say that 3M did not provide Post It Note glue for the levels, Super Glue did. I’m now on the waiting list for a skin graft.
So that’s my story, I hope you all had a good laugh at my expense and I apologize for the lengthy e-mail. I will let you know if anything significant comes from the MRI, but please keep your fingers crossed that this is it. If anyone wants to share some embarrassing medical stories with me, I’d be happy to listen. Again, please don’t reply to all if you have any comments and I thank you for your thoughts, prayers and cards. I love you all and thank you from the bottom of my heart for your support.
Jen
October 23, 2006 MRI Results Update:
Hi Everyone,
OK I promise this will be short. The MRI results came back and there was another mass found in the same breast and they wanted to look closer at it. Now some may think that's not so bad but with two lumps, my lumpectomy turns into a mastectomy, which does not make for a happy Jen. To say I had some freak out moments this weekend is an understatement.
So on Friday, I went for a second round of ultra sound and core tests. Thankfully Nicky went with me and held my hand and manned the iPod controls beautifully. I had a pre op apt. with my physician today and he gave me the results of that second round of biopsies - non malignant! I am so happy I feel like spinning on my head and spitting nickles. Honestly if you had asked me a month ago if I would be happy with a lumpectomy I'd say no, but perspective does change and I am thrilled with a lumpectomy.
My surgery is scheduled for Friday and we have heard many times that my surgeon is the best in the business so now I can almost not wait until Friday gets here so we can just get this over with, I have trips to book, customers to see, friends and family to celebrate with! Life must go on!
Thank you again for all of your prayers, letters, cards and thoughts, I really appreciate the support and thank you again from the bottom of my heart for being here for me.
Love to all!
Jen
October 29, 2006 Surgery Update
Hi Everyone,
I’m going to try this again. I wrote this whole thing yesterday in an e-mail and it failed to send and to save so I am re writing it again today. So if I’m not funny it’s because I’m a little miffed at myself. OK, I’m splitting this up into two stories, one is sort of fast and furious for those who either don’t have time or don’t want all the details from the surgery, the other is going to be more detail about the surgery and my fun day before. If you are going to be the detail person, please read both sections because there will be some information that I won’t repeat.
Fast and Furious:
I had my surgery on Friday, it went really well. The surgery started later than scheduled because there was a back up in radiology. Not that it was a big deal since we were a little late ourselves. On the way to the hospital we took a little detour to Liam’s house, which was about 8 miles out of our way. Now Liam does not do breast surgeries, although he has been accused of being surgeon like on the ice with his skates, but clearly not qualified to take care of my issue. So we got to the hospital and our surgeon, Dr. Guttormson, who is qualified to do surgery, was looking bright eyed and bushy tailed. She got a big kick out of my hospital attire, which consisted of comfy sweats, my Steelers blanket wrapped around my shoulders like a cape and my Grinch slippers. I have the cancer and I can wear whatever I want to the hospital. In any case, after my trip to radiology and the necessary preparation taken care of, off to surgery I went. It took about and hour and 40 minutes, they took the lump and (2) lymph nodes, which tested negative for cancer – Yeah! That means that I got to keep the rest of my nodes, which I like very much. I recovered in about 90 minutes and was wheeled back to my room where I had a little snack and my first blue bathroom break, (dye to determine which nodes were fed by the breast tissue).
When I got home, Steph brought me Chicken noodle soup from Panera Bread, delicious if you have not enjoyed it yet, and some ginger ale. I watched “Over the Hedge” because it’s cute and funny and perfect for post surgery brains, and I took a nap. After that I didn’t really need a pain pill until I went to bed and I slept well through the night. I still have some pain under my arm but in the grand scheme of things, I feel really good. Clearly I have the best home care that love can buy. JR, my mom and Steph have been great.
Pathology will be running more tests on the mass and we should have results by Tuesday for anything unusual or confirming what we already think we know. After that the oncologist will come up with a treatment plan and we’ll take the next step in my fight, which clearly I’m going to win. : )
That’s it for those who don’t want additional detail. I just want to thank you all once again for the support, cards, flowers, gifts and prayers that keep coming my way. I don’t know what I did to deserve all of you in my life but I sure am thankful and grateful to call you friends and family. Thank you from the bottom of my heart for everything.
Love to all!
Jen
Detail:
OK, for those who do want more detail I have to go back to the day before my surgery because it was a glorious day. It started out having a great lunch with my fabulous husband at Champp’s , followed up by picking my mom up at the airport. She and I then went to the Day Spa, where we had full body massages, reflexology and facials. And why wouldn’t I go get a massage the day before surgery? I can’t think of one good reason not to. Then I ran over to the chiropractor and got a fabulous adjustment and hugs from the staff. I’ve got to get my immune system firing at maximum efficiency ya know.
Then we came home to a beautifully decorated table. JR had the linens, china and crystal set up with flowers from Sherry and Mike in the middle of the table, it was really beautiful. And as if that wasn’t enough, JR made me dinner which had crab cakes, the best in all the land, filets wrapped with bacon, spiced potatoes topped with goat cheese and veggies. Yummy! The only thing that would have made dinner better for me is if I could have had a glass of wine too. I had to drink water because of that pesky surgery the next day.
We had a nice relaxing evening after that, at least I did. I think my mom and JR were worrying that I was not worrying. Actually I’m pretty sure they had enough worrying going on for the 3 of us, and I could clearly feel the worrying coming from Mary all the way in Eagan, so I was totally covered in the worrying department. I slept really well the night before and since I wasn’t allowed any food or liquids after midnight, I drank about a liter of water at 11:34 pm.
We got to the hospital, and as you all know, there is a lot of waiting going on. Check in, wait, go back to your room, wait, go to radiology, wait. I was OK with the waiting at this point because I was getting a little nervous; not for the surgery but for all the stuff they had to do to me in radiology. I had to have a wire local inserted into the mass, yes I was awake for this but you do want one of these. It’s a wire that directs the surgeon to the target area. It’s really thin and I did have my eyes closed but you can still feel it going in. I don’t care if they do numb it up, your mind fills the blanks in for you. Thank you! And when they’re done, there is about 10” of wire sticking straight out of the breast. Now I know how the Borg feel in Star Trek Next Generation. After that, they inject a blue dye, isotopes, under the nipple. This is where the breast drains into the lymph system and will tell the Dr. which nodes to pull out for testing. Not so bad this one, they did numb the area here too, the isotopes sting a little bit though. And as if all this wasn’t enough, I still had to have another mammogram. How on earth do you get a mammogram with a wire in your breast you ask? I had the same question. They do not compress as much as a regular test and you’re still numbed up from the procedure. I still didn’t like it. The purpose of this test is to give the Dr. a 3 dimensional picture of the surgical area. What ever this woman needs is fine with me; take as many precautions, tests and pictures as you want, if you need to whip out the sketch pad for some additional direction, go for it.
Oh, just in case you were wondering, JR was with me this whole time except during the radiology procedures, but he was right out side the door, thank God, so I got hugged and kissed a lot between procedures. He’s going straight to heaven.
JR and I got back to my room and my Mom and Steph joined us. The anesthesiologist came in and he was a total riot. When JR asked him if he had his “A” game going he said, “No, but I did stay at a Holiday Inn Express last night.”, so we liked him immediately. He hooked me up to an IV and it didn’t hurt. I hate needles, a lot, and they always hurt, but this one didn’t so we like him even more now. He pumped some feel good into the IV and I was in “Relaxationville” pretty quickly. Hey now! So I kissed everyone good –bye and was wheeled into surgery. You know its always weird getting wheeled around on a gurney and all you can see are the ceilings. That happens to me kind of a lot and it’s still strange. In any case, I moved over onto the table and I swear that’s the last thing I remember. It’s like they all look at each other, wink, and turn the hose on, good night everybody!
I started to come around in the recovery room and the guy to my left was snoring real loud and the baby to my right was crying. When you’re groggy it’s a very strange sound combination. And I was thirsty, really thirsty. The nurse came over with ice chips and I’m telling you these were the greatest ice chips in the history of ice chips. I finished those and she brought me more, clearly she is going straight to heaven too. When I got back to my room I was woozy but had to pee really badly. So the nurse helped me to the bathroom, and I had my first blue pee. I laughed when I saw it because I forgot it was going to be blue. I then had a snack, which JR helped me eat and got dressed. When we pulled into the drive way I looked at the front door and there was a cheery yellow package there sitting on the “go away” mat. What a nice surprise! Paul and Jill, thank you!
And you all know the rest. I am feeling really good today and am going to take my first shower when JR gets back with bandages and tape. We kind of forgot that we’d need those items eventually so he’s off to Walgreen’s right now. Again, thank you for all of your support and prayers; I am the luckiest girl in the world to have you all on my side. Thanks for listening.
Love to all!
Jen
November 1, 2006 Pathology Update
Hi Everyone,
OK, this is not going to be a good e-mail. Sorry this is coming so quick after the success story of my surgery, you’re probably sick of hearing about cancer, I know I certainly am. OK. I think I told you that we were still waiting for results from the removed lymph nodes and mass to either confirm what we knew (clear lymph system and cancer contained in the mass) or give us more information. Well we received the results from pathology late yesterday and none of the news is good.
If you recall from past e-mails, the mass was believed to be a 1.2 cm mass with lobular traits (little cancer fingers into the surrounding tissue), Grade 2, which is slow growing, and the lymph system was clear. When they took the lymph nodes during surgery they tested negative for cancer but told us that there was a 10% chance that those nodes could still be cancerous. As it turns out I hit the jackpot on those odds.
They found micro metastasis and isolated tumor cells in those nodes and they measure 0.9mm and 0.2mm each. What does that mean? It means that cancer has made its way into my lymph system. They also analyzed the tumor and the surrounding tissue and found even more disturbing news. The tumor was bigger, at 1.4 cm, and is a Grade 3 cancer, the fast growing cancer. The mass has extensive angio lymphatic invasion, which means that the blood/lymph vessels are compromised and possibly feeding cancerous cells to other parts of my body outside of the lymph system, for sure into the lymph system. Also, the superior margin of lumpectomy, the surrounding tissue, has invasive carcinoma throughout. There is also a thick band of breast tissue surrounding the area that the tumor was removed from that is showing signs of carcinoma. And that is still inside my body. We were told that this is a fairly rare type of cancer and that the findings do not show up on any mammogram or normal biopsy tests to date. Doesn’t that just figure?
What does this all mean for me? Well it means that I am drinking heavily right now. Because there is a higher risk of local reoccurrence in the breast, (remember there is still the mass that tested negative for cancer and the surrounding tissue that is cancerous), they are recommending that I have a modified radical mastectomy with node dissection. And that means that they will take my entire breast as well as the remaining lymph nodes. Oh God you have no idea how hard it is to write down those words.
Anyway, my surgeon, who did the lumpectomy and reluctantly delivered this bad news to us, made time for an emergency apt. this afternoon. She also recommended a plastic surgeon to discuss reconstructive surgery options. We met with both surgeons today and we discussed and mapped out a plan for me.
Since I am not willing to go through this a second time and I am still young and really wanting to live past 2007, it is my decision and the recommendation of the physicians to have a bilateral mastectomy and node dissection with reconstructive surgery. So that means that I am going to have both breasts removed; all of the lymph nodes from my right arm removed and several nodes under my left arm. During the double mastectomy they will start the process for reconstructive surgery which may take as long as a year to complete. Since cancer has compromised my lymph system, I will also have to go through chemo and possibly radiation. Pretty much I’ve got a real shitty year ahead of me.
I’m sure some of you are wondering how I’m writing this e-mail; Bacardi helps of course but so does talking about it. I’m absolutely devastated that I have to walk down this path; I am not looking forward to even one second of the next 12months. To say the wind has been knocked out of my sails is an understatement. But I know that God has a purpose for me and that I am living His plan and I have complete and total trust that He will take care of me during this unbearable journey.
So that’s it for now. I don’t know what else to say other than thank you for listening and being here for me. I hope you are all well and love to all of you.
Jen
November 8, 2006 New surgery date
Hi Everyone,
Let me just say thank you for the overwhelming numbers of responses to my last e-mail, I appreciate the thoughts and prayers coming from literally all over the country, thank you from the bottom of my heart, I am so fortunate to call you family and friends. We have received a bunch of inquiries as to my surgery date so I wanted to bring you all up to speed on the latest info as we know it. Sorry for the lengthy e-mail.
I recently had a chest x-ray, bone scan and PET CT. The chest x-ray was uneventful, “stand, hold your breath, turn, stop, hold your breath, OK you can go now” type of stuff. The bone scan was a little more interesting since I had to go get some stuff injected into my veins and come back 3 hours later for the scan. The scanner literally took up the whole room. The cool thing about the bone scan was that I could listen to my iPod while being scanned, so I wasn't bored. I was laying on this tongue depressor looking thing and the machine moved back and forth in the room. It didn’t hurt or make funny sounds but it did come pretty close to my nose during the cranial scan. All in all it wasn’t too bad.
The PET CT was way more interesting but not funny like the MRI. I had some radioactive glucose injected into my veins, yes, I am starting to look like a junkie, and then sat in a leather Lazy Boy for 45 minutes listening to music. Of course I had to play The Firm’s “Radioactive” song while I waited, because I am funny. Basically the radioactive glucose is attracted to the cancerous cells so they go right there.
When they injected it into my veins it smelled and tasted like what I can only describe as soapy, metallic chocolate chip cookies. And the saline solution that goes in first was cold so that was a little freaky. The PET CT is a combo machine, CT scan and the PET part which I can’t remember what it stands for. Basically the report that comes out when I am done looks like an outline of a person with everything a different color except the cancer which shows up black. Cool huh? The machine itself looks like an 8 ft. square marshmallow with a hole through it and the piece that I lay on looks like a Pilates machine, which moves you into the hole. I was scanned from head to mid thigh.
Thank God we do not have little kids at home because I would have had to stay away from them for 4-8 hours while my body rid itself of the radioactive material. Some of you are contemplating getting a radioactive injection now for just that reason aren’t you? Apparently adults and pets are OK to be around but as a joke JR built up a fence between us when I told him. Of course that just made me touch everything around him, because I’m a pain in the ass that way. : )
I am pleased to announce that all 3 tests came back negative for anything else cancerous growing in my body. Honestly with the way things have gone so far, we’re pretty sure they are looking at someone else’s results. But we’ll keep the faith that these are really mine. Actually the PET CT does show the cancer in my breast and lymph system so I guess they really are my results.
In any case, my surgery date is scheduled for November 30th. We were given another date, November 13th , but it wasn’t at the hospital I wanted and quite frankly I didn’t think I could talk myself into the surgery by then. That mixed with not wanting to feel crummy during Thanksgiving and the Bob Seger concert made the 30th an easy date to choose. That and I get to keep my breasts a little bit longer.
I will be going to Fairview Southdale hospital around 9:00 am and staying for no longer than 2 nights. Amazing isn’t it? Here is what kind of surgery I am going to have. A left sentinel node dissection (a sample of nodes from the left to make sure they are not cancerous too) with auxiliary node right dissection (the rest of the nodes that are infected under the right arm) bilateral mastectomy with reconstructive surgery (All breast tissue removed). They will also place a portacath (sp?) in my upper left chest to later receive chemo and save my veins. The operation takes about 4 ½ hours. My surgeons are both excellent and highly regarded in their perspective fields and they work together on a regular basis. I am in very good hands.
Disclaimer: For those of you who do not want more specific information about the reconstructive process or get queasy in any way, you should probably sign off here. Thank you again for listening and your support. For those who are curious or want more info read on.
The reconstructive process looks something like this. After they remove the breast tissue, the plastic surgeon will step in and place expanders under the chest muscle. They do this because it will look more natural. Normally they would place implants on top of the chest muscle and under the breast tissue but since there won’t be any breast tissue left, they would look like really, really fake boobs. So they go under the muscle instead. The expanders look like a thicker, textured skinned saline implant with a magnetic cylinder inside. They will be filled with saline so I will have what looks like breast mounds when I leave. God I hope they don’t swish when I walk. Ha! How funny would that be?
Each week I will have more saline injected into the expanders. How do they do that you ask? Well, they will fill them by injection. Those magnetic cylinders I mentioned, they guide the needle to the right spot in the expanders. They will go through the skin and muscle tissue and fill them up a little more each week. When they pull the needle out of the expander they seal back up again, hence the different material than other implants.
Once I get expanded to the size that I want, or in some cases as far as they can be expanded, (Some people’s skin does not stretch as far as they’d like because the skin is not as elastic or thick as needed) then I get my implants.
Apparently the expander process is no picnic as they are much more firm than the implants I will end up with. This sounds funny but once fully expanded they look like a really bad boob job, kinda squareish and are a little higher than normal breasts and are under the arm a bit. So clearly my golf game will go to hell and those boxing lessons I’ve always wanted will be completely out of the question. Oh wait a minute, my golf game is already crappy so no one will even notice. Apparently the square boobs get in the way of the golf swing. Don’t worry Fireside Open participants, the implants will be in by then and I will be happy to make our golf foursome score just as crappy as all the other years I’ve played.
After that I will go back in for surgery and get my implants. One thing I haven’t mentioned until now is that I will not have any nipples. They will be removed during the mastectomy, A. because they are part of the breast and they feed fluid from the breast to the lymph system and 2. if I did keep them then I’d still have to have mammograms and could still get breast cancer. I have to say, I am a little freaked out by this no nipple thing because, let’s face it, I’ve always had them, I'm kinda fond of mine and even the boys get to have nipples, so I will feel a bit like a freak job. On the upside though, I won’t have to worry about wearing a white bathing suit top in the pool or being in a cold room, so I have those two things going for me. Work with me here people, I need to hang on to any benefits I can think of. Feel free to make other suggestions.
After I get the implants, they need time to get settled in. Not really sure what that means but they’ll be settling. After that, then I go in for another operation to get nipples put on, if you can believe it, this is an out patient procedure. And finally I will get the areolas tattooed on. No, I do not go down to the local tattoo parlor and have Axe tattoo them on, apparently there is a lady near by that does this for the surgeons who do not do tattoos themselves.
During this time I will be going through chemo and possibly radiation. If you could all pray for no radiation I sure would appreciate it. Here’s why. Radiation will shrink the skin and tissue. Why is that an important fact? Well, since I have already had surgery for the lumpectomy, they will have to take more skin on the right than the left, so I will already be limited there for expansion. Also, if I have radiation, they will have to over expand my right breast so that if I do have radiation and the tissue shrinks, both breasts will be the same size. Now I think I have been a pretty good sport up to this point but even I will struggle with finding the humor in having two different sized breasts for 6 1/2 weeks. Oh who am I kidding? It would be a total riot but I’d rather not find out how funny it actually is.
In any case, the total reconstruction time from the November 30th surgery date will be about one year. I’d also like to mention that my employer Envision is doing everything they can to help me through this difficult time and I am so grateful to them for taking away the added stress of typical employment issues that others may face. I am very lucky indeed. Again, thank you all for your love, support and prayers, I am so thankful to have you on my side and hope that this e-mail finds you all well.
Love to all,
Jen
December 5, 2006
Jen Mastectomy Update
Guest e-mail author: J.R.
Hello everyone. I am going to take a swag at updating you on Jen’s condition, and offer details of her procedure. I am sure I will not replicate Jen’s efforts, but we do want to get an update out, and Jen is not up to it yet.
First let me say thank you to everyone for your ongoing support, thoughts and prayers. We are truly blessed to have so much love from our friends and family.
Jen had her surgery on November 30th, and the short version is that everything went great, and Jen is doing well!
Ok, now in the Jen tradition…….the longer, more detailed version. As most of you know, we chose November 30 for the surgery date so Jen would be healthy for the Thanksgiving weekend, and the Bob Seger Concert. This was a great decision! The girls were all home for Thanksgiving, and each learned how to make a key part of the Thanksgiving dinner. On Saturday we bought our Christmas tree and decorated the house for the Holidays. Saturday night we went to see Grease at the Chanhassen Dinner Theatre. It was a great family weekend with much laughter and fun.
Monday was a very rough night, as the reality of the pending surgery set in for Jen. She was very scared and sad. Lot’s of tears, and very little sleep. Tuesday was a better day with the Bob Seger concert with our friends Dave and Lisa. The concert was great, and a good distraction. On Wednesday, Jen’s dad arrived to be with Jen for the surgery. He gave Jen a lot of strength when she needed it.
We arrived at Fairview Hospital at 9am for the 12:45pm surgery. Jen was wearing her standard surgery outfit of a Jack Lambert Steelers Jersey, Steelers sweats, Steelers socks, Steelers blanket that Steph made for her, and of course her Grinch slippers. We happened to sit in the waiting room next to someone who was 14 months into the process Jen was about to begin. Her name was Julie, and she must have had flashbacks to when she was in the same situation as Jen 14 months earlier. Julie even has the same plastic surgeon and the same oncologist. She was sent straight from heaven. She answered a few questions, offered up some words of encouragement, and then asked if she could give Jen a hug. That is the first time Jen, and everyone else began to cry.
Jen got called into the “care suites” for the usual pre-op prep. Jen had a very different look on her face than when she went in for her lumpectomy. More determined, scared and sad all at the same time. Big alligator tears rolled down her face as the nurse asked all the standard questions about allergies and family history etc. Jen would then make a joke or two. I swear, Jen is the strongest person I have ever known. Jen slipped into her hospital gown and robe…..very attractive I must say, and we were off to the breast center.
Jen’s dad joined us again for the long walk to the breast center. This is where radioactive isotopes where injected under Jen’s left nipple to identify the sentinel node which would be taken as part of the procedure. When they did this on the right side prior to Jen’s lumpectomy, Jen was numbed up. This time she was not, and she said the pain of the isotopes entering her breast was horrible. Apparently they are looking into new medications that would allow the Dr. to inject that after the patient has been put under right before the surgery which Jen thinks is a great idea.
We were then taken to the surgery pre-op area. The surgery scheduled was a left sentinel node biopsy with left mastectomy and a right modified mastectomy with auxiliary node dissection. Modified means they would also remove all of the auxiliary nodes in the right breast. We learned that the number of lymph nodes in a breast varies from woman to woman. Some have 16, while other may have as many as 36. Who knew? Dr. Guttormson would also put in a port in Jen’s left chest above her breast area. This port will be used for the Chemo treatments later.
Jen would also begin the reconstruction process by having expanders implanted beneath her chest muscles. They would save as much skin as possible during the surgery in prep for the reconstruction process. Dr. Luong, the plastic surgeon, arrived to ‘mark’ Jen for surgery. She used a black pen that I was sure to be a special ‘surgery marking’ pen. Turns out it was a Sharpie! She marked the bottom and tops of Jen’s breasts as well as the incision areas which were around the nipples and then towards the sides in a teardrop shape. They mark the breast area so they have a base line for reconstruction. Easy to find the tops and bottoms of breast’s when you have them……not so much when they are gone. Dr. Guttormson arrived to visit with Jen. She was in street clothes as it was her day off. She told us to expect about five hours of surgery and she was off to get into her scrubs.
As the surgery team prepped Jen, we could hear all the other patients around us getting prepped. It was then that Jen chose to listen to her iPod. Blue October and Led Zeppelin Physical Graffiti were her pre-op music choices. Reality really began to set in for both of us, and Jen was very emotional. I have never felt so helpless or inadequate in my life. What to say to your wife at this moment is simply not in the husband handbook. Somehow, “it’s going to be ok” just does not cut it. All I could do was hold Jen’s hand, tell her I love her, and hope and pray she finds some kind of comfort. It was now close to 12:45pm, and I am sure all of your prayers were pouring in to God for Jen. Jen smiled when I reminded her that Tom Mitchell told us to picture the Verizon phone commercial with the Network of people behind her. “Hi, we are here for our surgery!” We are so thankful for our friends and family.
They came to get Jen. A final kiss, I love you, and a squeeze of the hand, and she was on her way down the hall. I watched until she disappeared around a corner. I just stood there for about two minutes as all the activity of the pre-op area buzzed around me. I gathered Jen’s bag and joined her dad in the waiting room.
At about 4:30pm Dr. Guttormson found us and let us know that her part of the surgery went very well. She said the ‘flaps’ looked great and she anticipated Dr. Luong would have a great result too. Our friend Kerry Chase arrived with a box of cookies for the Nurses in the station Jen would be recovering in. The box had a great note on top to the Nurses thanking them in advance for taking such good care of her friend, and telling them a little bit about Jen. It was very thoughtful. And the advance nurse sucking up didn’t hurt when we moved Jen into a private room later! Our oldest daughter Nicky arrived with a blanket and an envelope of jokes that her 4th grade class wrote to cheer Jen up. This just in……4th grade jokes, not so funny. They did crack us up though.
At about 6:15pm Dr. Luong found us in the waiting room and said she was delighted with the result of her portion of the surgery. Jen was in recovery until about 8pm when we joined her in her room.
Jen was still very drugged up, but was awake enough to say she felt like she had been hit by a truck. Nicky drove Jen’s dad back to our house at about 8:45pm. I spent the night in a chair next to Jen. She was alert at about 11pm and confirmed this was the most pain she had ever been in. This coming from a woman who has broken her neck and has constant back pain from degenerative discs. Jen went in and out of sleep, but we were both mostly awake throughout the night.
Friday was a great day for Jen. She was in a lot of pain, but she looked and felt good all things considered. She was alert, talkative, and funny. Jen has drain tubes below where her breasts were which will be in place for about a week. (hopefully out on December 6) Friday Jen was moved to a private room and I spent the night again. This time there was a chair that rolled out into a cot. Nicky, Stephanie, and Jen’s dad were still in the room at about 10:30pm, and Jen was getting very tired. I pulled out the old Steve Molin line: “Oh honey, we should go to bed so our company can leave.”
Jen had taken the max of her meds by 11pm. She was in a lot of pain, so the nurse gave a shot of morphine at about 2:30am. Other than that, I think Jen slept pretty well…..we both did. On Saturday morning Jen was in terrible pain throughout her chest area. The nurse called the doctor to change to a pain solution Jen could take more often if needed. The oxycodone has helped a great deal. Saturday was a bad day for Jen. She was very loopy, and in much pain throughout the day. She rallied in the afternoon, and was discharged at about 5pm.
Jen chose our very comfortable couch with the reclining section in our family room as her home care center. It allows her to sleep sitting up a bit, and change positions when needed for comfort. I have joined her there each night so I may help with bathroom visits and meds.
Each day Jen is feeling better, and doing more ‘laps’ around our main floor area of the house. We have been waiting for the pathology results on the nodes and the margins of the area of the tumor. The results will determine if radiation is necessary after chemo. Since Jen has already had two positive nodes, two more would qualify her for radiation. Or if the margins of cancer were too close to her chest or skin, she would require radiation. Radiation would begin after Chemo and be every day M-F for six weeks. Radiation also affects the reconstruction in that it ‘shrinks’ the skin. They would then have to over expand the right breast in anticipation of this shrinkage. The doctors are good at this, but with so many variables the result is less desirable then if one does not have radiation.
GOOD NEWS! As I am typing this at 3:30pm on Tuesday, Dr. Guttormson called with the Pathology results. The scare is that they found another small mass about .6cm….about ½ of an inch in size. They had not seen this before in any of the mammograms, ultrasounds etc. If Jen had not done the Mastectomy, this mass would have been a recurrence, or defined as a new cancer. It is now out of her body. The GOOD NEWS is that all the nodes came back negative, and the margins were of a favorable measurement. Together this means that the Doctor and the Pathologist agree to NOT recommend radiation!!!! Dr. Guttormson also prescribed a bottle of champagne to celebrate. Who are we to not follow doctor’s orders!
Jen cried, in a very good way, when we heard the news together. Jen’s mom arrived today to help through Sunday. Jen’s sister arrives on Sunday so I am sure there will be much laughter around the house over the next couple of weeks. Next steps are about three more weeks of recovery. Jen will return to work during this time. Chemo will begin late December or very early in January
By the way, Jen looks cute as hell in her two piece man jammies with the button fly in front. Jen is an amazing woman.
Thank you again for all of your thoughts, calls, e-mails, gifts and cards. Jen loves them all. You will never know how much we appreciate your friendship and love.
J.R. and Jen
Jen has been updating our many friends and family via e-mail, but we thought this might be an alternative for people to keep updated and in touch. - J.R.
Jen was diagnosed with Breast Cancer on October 8, 2006
Here is her story so far:
October 11, 2006 Cancer news
Hi Everyone,
OK, most of you know that I have recently been diagnosed with breast cancer, fortunately we caught it at an early stage and the prognosis looks very good. I am sending out a mass e-mail so I can keep everyone on the same page at the same time. If you reply back to this, and I would love to hear from you at any time, please do not reply to all, that will just be annoying to everyone else on the list.
OK, here goes. I had the mammograms, ultra sounds and more mammograms on the 5th of this month which led the physicians to look at a mass a bit closer. At first they thought it was a cyst and did the needle test, which was not fun I can guarantee you. Unfortunately they did not get the result they were looking for, which was fluid. So next we did the core test. Let me just say that the core test really sucks and if you have to have one, get your iPod out and take a Friend because you are going to need someone’s hand to hold and will want to be anywhere else on the planet. Without going into a bunch of gory details, they essentially took 6 samples of the mass through what looked like a McDonald's drinking straw.
So we waited over the weekend, thankfully, thanks to those who were around by the way, it was a fun weekend, when the call we were dreading came during the Steeler's game. The game was going to hell anyway so I was already in a crummy mood. Let me say, there is no way to prepare yourself for the words, "The tests results are back and you have tested positive for breast cancer." You can't even imagine how many questions come to mind, including, what is the next step?
So the next step is meeting with a general surgeon and an oncologist. And fortunately the medical facility has a role of Clinical Nurse Specialist Patient Care Coordinator. Trust me, you want this person to call you as soon as possible. Margaret is her name and she has been great, reviewing test results and what they mean and getting me set up with the best physician's Dictaphone's insurance can buy. And she said I can call if I need a shoulder to cry on, this woman was sent straight from heaven.
So we met with both physician's today and here is what I know for certain:
The mass is 1.2 cm, more than likely I am in Stage 1 and it is grade 2, which is a slow growing cancer. You don't want grade 3, that is fast growing. The type of cancer is Invasive Ductile with Lobbular traits. This means that it is a solid mass that may have little cancer fingers spraying outside of the original mass, but they won't know for certain until surgery. They feel very positive that it is still contained. I am Estrogen and progesterone receptor positive, which sounds bad but is actually a good thing according to everyone I've talked to. What that means is that the cancer is fed by the estrogen in my body. Since that is the case, they can use hormone therapy to fight cancer cells that may still be present and just waiting to turn into a pain in the ass later.
I am scheduled for surgery on Oct. 27th at Ridges hospital at 10:30am. They are planning a wire localized lumpectomy and sentinel node biopsy with possible axillary node dissection. What the hell does that mean? Well, they are going to take the mass and a couple of lymph nodes that the breast drains into. If there is no cancer in the lymph nodes, then that is great, they leave the rest alone. If you can believe it, this is an out patient operation. If they take all of the nodes, then I get to stay over night. I will be tested beforehand by MRI, chest x-ray, bone scan, blood work and tumor markers to see if there may be cancer any where else in my body.
What can I expect after surgery? Well, the recovery time is practically nothing, which is why I'm doing it on a Friday. I'll be back to work on Monday and total recovery time should be about 3 weeks. Based on what the results are from surgery, I may either go into chemo or radiation. The only reason for chemo is this, the size of the mass, over 1 cm, and my age, 40, so they would want to treat this fairly aggressively since I am considered young. And I know that I am because I got carded at the Cheesecake Factory when I ordered a glass of wine last night. If they decide that chemo is unnecessary, then I would have 6 1/2 weeks of radiation therapy. In either case, chemo or no chemo, radiation therapy will be necessary. After that, I get to go on hormone therapy for 5 years. Lucky JR, we may get to save money on feminine products but at least we'll be washing sweaty clothes more often. And apparently Mary won't be visiting me at our house in the wintertime.
So that is what I know so far, I probably gave you all way more info than you needed or wanted but hey, I'd rather write it all down and then when I get to see you all later, we can talk about something other than cancer.
Thank you all for your warm comments, thoughts, prayers and offers for help, I appreciate it all and would not be able to get through any of this without you all. I feel really good about the prognosis and short of not getting cancer at all, I guess this is the one to get if you're going to get it. So, since it is breast cancer awareness month, girls, go get checked out. If you need mammogram practice, ask your honey's to drive the car over your breasts while laying on the garage floor, it's about the same thing.
So thank you all for listening, I love you all and hope that you are having a great day today! Don't go changing on me!
Jen
PS. if you see that I have forgotten someone on the list, please forward this message to them and ask them to reply to me so I can include them on future messages and add them to my address book.
October 16, 2006 MRI Story
Hi Everyone,
This isn’t so much an update but a story that I think will entertain you. As you know from my last e-mail, I was to have an MRI to see if there was any more cancer lingering in places that we do not want it. My appointment was on Monday morning, we’re still waiting for results but I just have to tell you about the experience.
Now let me preface the story that J.R. was out of town, otherwise I would not have done this myself. But, since girls can do anything, I thought it was a good idea to lift the kitty litter bucket and take it down stairs. Not so much. I pulled my back out when I was setting it down. Now most of you have seen me after I’ve thrown my back out and know that it makes my butt stick out. So I’m walking around the house like Mrs. Wiggins from the Carroll Burnett Show, and I’m in a fair amount of pain. So on Monday morning I took my usual dose of Advil but I also took a muscle relaxer thinking that I would head to the chiropractor afterwards.
Somehow I managed to get myself in the car and made it to the hospital. As I was checking in and filling out my paperwork, the muscle relaxer finally kicked in. So I’m looking at the pen in my hand and I was thinking, “What a pretty flower they’ve taped to this pen!” The guy sitting across from me must have thought I was a mental patient because he moved over to the furthest row of chairs from me, which made me laugh and probably didn’t help his assessment of me.
So I go back, get in my “robes” and get an IV in my arm for something they call “contrast”. They take pictures without contrast and then with, so they can get a better picture of the mass. It’s some blue liquid deal and no, it does not turn your pee blue. The nurse and I go into the MRI room and she has to stick some yellow things on my boobs so they can keep the left / right pictures straight. The yellow things look like one of those new dishwasher liquid packets with the yellow liquid thing from a construction level in the middle of it. Kinda puffy like with the level in the middle. Are you with me? K. So they look good and are rather comfy.
So we go over to the machine, and she tells me that I have to lay face down for the MRI. I look at this contraption and I see a place for my face to rest, like when you get a massage, only smaller, a place for my arms to lie, above my head and something that looks like two 7-11 Big Gulp cup holders, and I realize that’s where my boobs with the levels are going.
So she tells me to climb aboard and I’m thinking to myself, “Is she kidding me? My back is killing me and I can’t bend my arms to hoist myself up because of the IV and I’m a little messed up from the muscle relaxer.” But what the hell, I’m up for the challenge.
Somehow we managed to get me in position and I am thanking God that neither J.R. nor Sue are there because they’d be laughing their asses off at me. So to get a mental picture of my position I’m laying face down, on an angle. My arms are straight over my head like when you teach kids to first dive in the pool, they make the V shape with their arms, and my face is in the circle deal, thankfully with a sheet that keeps my eyes closed to keep from seeing the horror of it all, and my knees are bent and my boobs are hanging down into the cup holders.
As if my dignity wasn’t already in jeopardy, she tells me that she needs to put ear plugs in my ears because it gets loud in there. OK. So I can’t see anything but she tells me she’s going to put them in and all of a sudden she just sticks them in there. Rather aggressively. Just so you know what it’s like, when you get home tonight, sit down, close your eyes and ask someone in your house to stick something in your ear. It’s pretty creepy. So then she starts saying more stuff but since I have the earplugs in, I can’t hear a damn thing she is saying. Maybe she should have finished the instructions beforehand. I thought I heard something like, “And I’m just going to make a couple of adjustments.” Next thing I know, she’s reaching underneath the cup holders and starts fiddling with my boobs. To say I was surprised is an understatement and even though you know it’s coming, you’re never truly prepared for this one. Especially when you’re in such a vulnerable position.
After the fiddling, she sticks some squeeze ball in my hand in case I freak out and need to stop the procedure; I almost squeezed it right then. Then she hooked me up to the “contrast” and wraps the cord around my finger. Next thing I know, me, the levels and the cup holders head feet first into the MRI. So I’m in the MRI and she’s talking to me through this speaker, which oddly enough sounds like Charlie Brown’s teacher. All I hear is blah blah blah, blah blah, blah blah blah.
In case you have not been in an MRI recently, there are some new sounds you should be aware of. We start out with a little drumming, specifically John Bonham playing the bongos during his solo on Moby Dick. So I’m cool with that, I can hang with the bongos. There is some clicking and then I get this sound that I thought someone was saying something to me. Play along with me, in a low monotone voice say out loud DOT DOT DOT DOT DOT DOT DOT DOT DOT real fast. If you go for about 2 minutes and follow it up with the bongos again, it’s actually pretty catchy. If I were more creative I think I could have come up with a top 40 hit. There are more bongos, clicking and banging and then a totally new voice introduces it’s self. In a higher tone I hear, Do It Do It Do It Do It Do It Do It Do It. If I were suicidal I WOULD DO IT! Who at the MRI manufacturer approved that one?
After about 20 minutes in this embarrassing position my arms finally fall asleep. Terrific. That bulb I’m supposed to squeeze if I want to stop the MRI, not so much, I can’t feel it, nor do I have the strength to squeeze it. I’m finally getting into the DOT DOT DOT Do It Do It Do It bongo medley when I hear Blah, blah, blah, contrast, blah, blah, blah.
You know when you go on a roller coaster ride and you get to the top of a really big hill and as you go over you think, “Holy shit! I don’t think I can do thiiiiiiisssss!” Well, inject contrast into your system and it’s a lot like that. Apparently "contrast” doesn’t like muscle relaxers very much. I’m thinking to myself, “What if I faint! I may roll out of the cup holders and get jammed into the MRI with my levels? Don’t faint! Don’t faint! Don’t faint!” I didn’t faint. “Don’t puke either!” I didn’t, I think I slobbered though. Not sure if it was the “contrast” or the muscle relaxers, oh well, I think we’ve established that my dignity was already gone. A few more bongos, clicking and DOT DOT DOT’s and I was done. Thank God this humiliation is coming to an end.
Not by a long shot. Getting out of the MRI with arms you can’t feel or use and a bad back is a whole new level of humiliation. Floppy arms, red ringed face, “I’m gonna faint” drool and exposed boobs with yellow levels for all the world to see, was a lovely scene. I’m glad they didn’t have mirrors in there or I would have been truly horrifed. The only thing that would have made it worse is if I was incontinent too. I’m sure I looked like a drugged up beached whale as she was trying to roll me out of the cup holders and onto the gurney. Although I would have preferred my dignity I was satisfied to get my circulation back. I went back to the room to change and realized that I still had to take the levels off. Let me just say that 3M did not provide Post It Note glue for the levels, Super Glue did. I’m now on the waiting list for a skin graft.
So that’s my story, I hope you all had a good laugh at my expense and I apologize for the lengthy e-mail. I will let you know if anything significant comes from the MRI, but please keep your fingers crossed that this is it. If anyone wants to share some embarrassing medical stories with me, I’d be happy to listen. Again, please don’t reply to all if you have any comments and I thank you for your thoughts, prayers and cards. I love you all and thank you from the bottom of my heart for your support.
Jen
October 23, 2006 MRI Results Update:
Hi Everyone,
OK I promise this will be short. The MRI results came back and there was another mass found in the same breast and they wanted to look closer at it. Now some may think that's not so bad but with two lumps, my lumpectomy turns into a mastectomy, which does not make for a happy Jen. To say I had some freak out moments this weekend is an understatement.
So on Friday, I went for a second round of ultra sound and core tests. Thankfully Nicky went with me and held my hand and manned the iPod controls beautifully. I had a pre op apt. with my physician today and he gave me the results of that second round of biopsies - non malignant! I am so happy I feel like spinning on my head and spitting nickles. Honestly if you had asked me a month ago if I would be happy with a lumpectomy I'd say no, but perspective does change and I am thrilled with a lumpectomy.
My surgery is scheduled for Friday and we have heard many times that my surgeon is the best in the business so now I can almost not wait until Friday gets here so we can just get this over with, I have trips to book, customers to see, friends and family to celebrate with! Life must go on!
Thank you again for all of your prayers, letters, cards and thoughts, I really appreciate the support and thank you again from the bottom of my heart for being here for me.
Love to all!
Jen
October 29, 2006 Surgery Update
Hi Everyone,
I’m going to try this again. I wrote this whole thing yesterday in an e-mail and it failed to send and to save so I am re writing it again today. So if I’m not funny it’s because I’m a little miffed at myself. OK, I’m splitting this up into two stories, one is sort of fast and furious for those who either don’t have time or don’t want all the details from the surgery, the other is going to be more detail about the surgery and my fun day before. If you are going to be the detail person, please read both sections because there will be some information that I won’t repeat.
Fast and Furious:
I had my surgery on Friday, it went really well. The surgery started later than scheduled because there was a back up in radiology. Not that it was a big deal since we were a little late ourselves. On the way to the hospital we took a little detour to Liam’s house, which was about 8 miles out of our way. Now Liam does not do breast surgeries, although he has been accused of being surgeon like on the ice with his skates, but clearly not qualified to take care of my issue. So we got to the hospital and our surgeon, Dr. Guttormson, who is qualified to do surgery, was looking bright eyed and bushy tailed. She got a big kick out of my hospital attire, which consisted of comfy sweats, my Steelers blanket wrapped around my shoulders like a cape and my Grinch slippers. I have the cancer and I can wear whatever I want to the hospital. In any case, after my trip to radiology and the necessary preparation taken care of, off to surgery I went. It took about and hour and 40 minutes, they took the lump and (2) lymph nodes, which tested negative for cancer – Yeah! That means that I got to keep the rest of my nodes, which I like very much. I recovered in about 90 minutes and was wheeled back to my room where I had a little snack and my first blue bathroom break, (dye to determine which nodes were fed by the breast tissue).
When I got home, Steph brought me Chicken noodle soup from Panera Bread, delicious if you have not enjoyed it yet, and some ginger ale. I watched “Over the Hedge” because it’s cute and funny and perfect for post surgery brains, and I took a nap. After that I didn’t really need a pain pill until I went to bed and I slept well through the night. I still have some pain under my arm but in the grand scheme of things, I feel really good. Clearly I have the best home care that love can buy. JR, my mom and Steph have been great.
Pathology will be running more tests on the mass and we should have results by Tuesday for anything unusual or confirming what we already think we know. After that the oncologist will come up with a treatment plan and we’ll take the next step in my fight, which clearly I’m going to win. : )
That’s it for those who don’t want additional detail. I just want to thank you all once again for the support, cards, flowers, gifts and prayers that keep coming my way. I don’t know what I did to deserve all of you in my life but I sure am thankful and grateful to call you friends and family. Thank you from the bottom of my heart for everything.
Love to all!
Jen
Detail:
OK, for those who do want more detail I have to go back to the day before my surgery because it was a glorious day. It started out having a great lunch with my fabulous husband at Champp’s , followed up by picking my mom up at the airport. She and I then went to the Day Spa, where we had full body massages, reflexology and facials. And why wouldn’t I go get a massage the day before surgery? I can’t think of one good reason not to. Then I ran over to the chiropractor and got a fabulous adjustment and hugs from the staff. I’ve got to get my immune system firing at maximum efficiency ya know.
Then we came home to a beautifully decorated table. JR had the linens, china and crystal set up with flowers from Sherry and Mike in the middle of the table, it was really beautiful. And as if that wasn’t enough, JR made me dinner which had crab cakes, the best in all the land, filets wrapped with bacon, spiced potatoes topped with goat cheese and veggies. Yummy! The only thing that would have made dinner better for me is if I could have had a glass of wine too. I had to drink water because of that pesky surgery the next day.
We had a nice relaxing evening after that, at least I did. I think my mom and JR were worrying that I was not worrying. Actually I’m pretty sure they had enough worrying going on for the 3 of us, and I could clearly feel the worrying coming from Mary all the way in Eagan, so I was totally covered in the worrying department. I slept really well the night before and since I wasn’t allowed any food or liquids after midnight, I drank about a liter of water at 11:34 pm.
We got to the hospital, and as you all know, there is a lot of waiting going on. Check in, wait, go back to your room, wait, go to radiology, wait. I was OK with the waiting at this point because I was getting a little nervous; not for the surgery but for all the stuff they had to do to me in radiology. I had to have a wire local inserted into the mass, yes I was awake for this but you do want one of these. It’s a wire that directs the surgeon to the target area. It’s really thin and I did have my eyes closed but you can still feel it going in. I don’t care if they do numb it up, your mind fills the blanks in for you. Thank you! And when they’re done, there is about 10” of wire sticking straight out of the breast. Now I know how the Borg feel in Star Trek Next Generation. After that, they inject a blue dye, isotopes, under the nipple. This is where the breast drains into the lymph system and will tell the Dr. which nodes to pull out for testing. Not so bad this one, they did numb the area here too, the isotopes sting a little bit though. And as if all this wasn’t enough, I still had to have another mammogram. How on earth do you get a mammogram with a wire in your breast you ask? I had the same question. They do not compress as much as a regular test and you’re still numbed up from the procedure. I still didn’t like it. The purpose of this test is to give the Dr. a 3 dimensional picture of the surgical area. What ever this woman needs is fine with me; take as many precautions, tests and pictures as you want, if you need to whip out the sketch pad for some additional direction, go for it.
Oh, just in case you were wondering, JR was with me this whole time except during the radiology procedures, but he was right out side the door, thank God, so I got hugged and kissed a lot between procedures. He’s going straight to heaven.
JR and I got back to my room and my Mom and Steph joined us. The anesthesiologist came in and he was a total riot. When JR asked him if he had his “A” game going he said, “No, but I did stay at a Holiday Inn Express last night.”, so we liked him immediately. He hooked me up to an IV and it didn’t hurt. I hate needles, a lot, and they always hurt, but this one didn’t so we like him even more now. He pumped some feel good into the IV and I was in “Relaxationville” pretty quickly. Hey now! So I kissed everyone good –bye and was wheeled into surgery. You know its always weird getting wheeled around on a gurney and all you can see are the ceilings. That happens to me kind of a lot and it’s still strange. In any case, I moved over onto the table and I swear that’s the last thing I remember. It’s like they all look at each other, wink, and turn the hose on, good night everybody!
I started to come around in the recovery room and the guy to my left was snoring real loud and the baby to my right was crying. When you’re groggy it’s a very strange sound combination. And I was thirsty, really thirsty. The nurse came over with ice chips and I’m telling you these were the greatest ice chips in the history of ice chips. I finished those and she brought me more, clearly she is going straight to heaven too. When I got back to my room I was woozy but had to pee really badly. So the nurse helped me to the bathroom, and I had my first blue pee. I laughed when I saw it because I forgot it was going to be blue. I then had a snack, which JR helped me eat and got dressed. When we pulled into the drive way I looked at the front door and there was a cheery yellow package there sitting on the “go away” mat. What a nice surprise! Paul and Jill, thank you!
And you all know the rest. I am feeling really good today and am going to take my first shower when JR gets back with bandages and tape. We kind of forgot that we’d need those items eventually so he’s off to Walgreen’s right now. Again, thank you for all of your support and prayers; I am the luckiest girl in the world to have you all on my side. Thanks for listening.
Love to all!
Jen
November 1, 2006 Pathology Update
Hi Everyone,
OK, this is not going to be a good e-mail. Sorry this is coming so quick after the success story of my surgery, you’re probably sick of hearing about cancer, I know I certainly am. OK. I think I told you that we were still waiting for results from the removed lymph nodes and mass to either confirm what we knew (clear lymph system and cancer contained in the mass) or give us more information. Well we received the results from pathology late yesterday and none of the news is good.
If you recall from past e-mails, the mass was believed to be a 1.2 cm mass with lobular traits (little cancer fingers into the surrounding tissue), Grade 2, which is slow growing, and the lymph system was clear. When they took the lymph nodes during surgery they tested negative for cancer but told us that there was a 10% chance that those nodes could still be cancerous. As it turns out I hit the jackpot on those odds.
They found micro metastasis and isolated tumor cells in those nodes and they measure 0.9mm and 0.2mm each. What does that mean? It means that cancer has made its way into my lymph system. They also analyzed the tumor and the surrounding tissue and found even more disturbing news. The tumor was bigger, at 1.4 cm, and is a Grade 3 cancer, the fast growing cancer. The mass has extensive angio lymphatic invasion, which means that the blood/lymph vessels are compromised and possibly feeding cancerous cells to other parts of my body outside of the lymph system, for sure into the lymph system. Also, the superior margin of lumpectomy, the surrounding tissue, has invasive carcinoma throughout. There is also a thick band of breast tissue surrounding the area that the tumor was removed from that is showing signs of carcinoma. And that is still inside my body. We were told that this is a fairly rare type of cancer and that the findings do not show up on any mammogram or normal biopsy tests to date. Doesn’t that just figure?
What does this all mean for me? Well it means that I am drinking heavily right now. Because there is a higher risk of local reoccurrence in the breast, (remember there is still the mass that tested negative for cancer and the surrounding tissue that is cancerous), they are recommending that I have a modified radical mastectomy with node dissection. And that means that they will take my entire breast as well as the remaining lymph nodes. Oh God you have no idea how hard it is to write down those words.
Anyway, my surgeon, who did the lumpectomy and reluctantly delivered this bad news to us, made time for an emergency apt. this afternoon. She also recommended a plastic surgeon to discuss reconstructive surgery options. We met with both surgeons today and we discussed and mapped out a plan for me.
Since I am not willing to go through this a second time and I am still young and really wanting to live past 2007, it is my decision and the recommendation of the physicians to have a bilateral mastectomy and node dissection with reconstructive surgery. So that means that I am going to have both breasts removed; all of the lymph nodes from my right arm removed and several nodes under my left arm. During the double mastectomy they will start the process for reconstructive surgery which may take as long as a year to complete. Since cancer has compromised my lymph system, I will also have to go through chemo and possibly radiation. Pretty much I’ve got a real shitty year ahead of me.
I’m sure some of you are wondering how I’m writing this e-mail; Bacardi helps of course but so does talking about it. I’m absolutely devastated that I have to walk down this path; I am not looking forward to even one second of the next 12months. To say the wind has been knocked out of my sails is an understatement. But I know that God has a purpose for me and that I am living His plan and I have complete and total trust that He will take care of me during this unbearable journey.
So that’s it for now. I don’t know what else to say other than thank you for listening and being here for me. I hope you are all well and love to all of you.
Jen
November 8, 2006 New surgery date
Hi Everyone,
Let me just say thank you for the overwhelming numbers of responses to my last e-mail, I appreciate the thoughts and prayers coming from literally all over the country, thank you from the bottom of my heart, I am so fortunate to call you family and friends. We have received a bunch of inquiries as to my surgery date so I wanted to bring you all up to speed on the latest info as we know it. Sorry for the lengthy e-mail.
I recently had a chest x-ray, bone scan and PET CT. The chest x-ray was uneventful, “stand, hold your breath, turn, stop, hold your breath, OK you can go now” type of stuff. The bone scan was a little more interesting since I had to go get some stuff injected into my veins and come back 3 hours later for the scan. The scanner literally took up the whole room. The cool thing about the bone scan was that I could listen to my iPod while being scanned, so I wasn't bored. I was laying on this tongue depressor looking thing and the machine moved back and forth in the room. It didn’t hurt or make funny sounds but it did come pretty close to my nose during the cranial scan. All in all it wasn’t too bad.
The PET CT was way more interesting but not funny like the MRI. I had some radioactive glucose injected into my veins, yes, I am starting to look like a junkie, and then sat in a leather Lazy Boy for 45 minutes listening to music. Of course I had to play The Firm’s “Radioactive” song while I waited, because I am funny. Basically the radioactive glucose is attracted to the cancerous cells so they go right there.
When they injected it into my veins it smelled and tasted like what I can only describe as soapy, metallic chocolate chip cookies. And the saline solution that goes in first was cold so that was a little freaky. The PET CT is a combo machine, CT scan and the PET part which I can’t remember what it stands for. Basically the report that comes out when I am done looks like an outline of a person with everything a different color except the cancer which shows up black. Cool huh? The machine itself looks like an 8 ft. square marshmallow with a hole through it and the piece that I lay on looks like a Pilates machine, which moves you into the hole. I was scanned from head to mid thigh.
Thank God we do not have little kids at home because I would have had to stay away from them for 4-8 hours while my body rid itself of the radioactive material. Some of you are contemplating getting a radioactive injection now for just that reason aren’t you? Apparently adults and pets are OK to be around but as a joke JR built up a fence between us when I told him. Of course that just made me touch everything around him, because I’m a pain in the ass that way. : )
I am pleased to announce that all 3 tests came back negative for anything else cancerous growing in my body. Honestly with the way things have gone so far, we’re pretty sure they are looking at someone else’s results. But we’ll keep the faith that these are really mine. Actually the PET CT does show the cancer in my breast and lymph system so I guess they really are my results.
In any case, my surgery date is scheduled for November 30th. We were given another date, November 13th , but it wasn’t at the hospital I wanted and quite frankly I didn’t think I could talk myself into the surgery by then. That mixed with not wanting to feel crummy during Thanksgiving and the Bob Seger concert made the 30th an easy date to choose. That and I get to keep my breasts a little bit longer.
I will be going to Fairview Southdale hospital around 9:00 am and staying for no longer than 2 nights. Amazing isn’t it? Here is what kind of surgery I am going to have. A left sentinel node dissection (a sample of nodes from the left to make sure they are not cancerous too) with auxiliary node right dissection (the rest of the nodes that are infected under the right arm) bilateral mastectomy with reconstructive surgery (All breast tissue removed). They will also place a portacath (sp?) in my upper left chest to later receive chemo and save my veins. The operation takes about 4 ½ hours. My surgeons are both excellent and highly regarded in their perspective fields and they work together on a regular basis. I am in very good hands.
Disclaimer: For those of you who do not want more specific information about the reconstructive process or get queasy in any way, you should probably sign off here. Thank you again for listening and your support. For those who are curious or want more info read on.
The reconstructive process looks something like this. After they remove the breast tissue, the plastic surgeon will step in and place expanders under the chest muscle. They do this because it will look more natural. Normally they would place implants on top of the chest muscle and under the breast tissue but since there won’t be any breast tissue left, they would look like really, really fake boobs. So they go under the muscle instead. The expanders look like a thicker, textured skinned saline implant with a magnetic cylinder inside. They will be filled with saline so I will have what looks like breast mounds when I leave. God I hope they don’t swish when I walk. Ha! How funny would that be?
Each week I will have more saline injected into the expanders. How do they do that you ask? Well, they will fill them by injection. Those magnetic cylinders I mentioned, they guide the needle to the right spot in the expanders. They will go through the skin and muscle tissue and fill them up a little more each week. When they pull the needle out of the expander they seal back up again, hence the different material than other implants.
Once I get expanded to the size that I want, or in some cases as far as they can be expanded, (Some people’s skin does not stretch as far as they’d like because the skin is not as elastic or thick as needed) then I get my implants.
Apparently the expander process is no picnic as they are much more firm than the implants I will end up with. This sounds funny but once fully expanded they look like a really bad boob job, kinda squareish and are a little higher than normal breasts and are under the arm a bit. So clearly my golf game will go to hell and those boxing lessons I’ve always wanted will be completely out of the question. Oh wait a minute, my golf game is already crappy so no one will even notice. Apparently the square boobs get in the way of the golf swing. Don’t worry Fireside Open participants, the implants will be in by then and I will be happy to make our golf foursome score just as crappy as all the other years I’ve played.
After that I will go back in for surgery and get my implants. One thing I haven’t mentioned until now is that I will not have any nipples. They will be removed during the mastectomy, A. because they are part of the breast and they feed fluid from the breast to the lymph system and 2. if I did keep them then I’d still have to have mammograms and could still get breast cancer. I have to say, I am a little freaked out by this no nipple thing because, let’s face it, I’ve always had them, I'm kinda fond of mine and even the boys get to have nipples, so I will feel a bit like a freak job. On the upside though, I won’t have to worry about wearing a white bathing suit top in the pool or being in a cold room, so I have those two things going for me. Work with me here people, I need to hang on to any benefits I can think of. Feel free to make other suggestions.
After I get the implants, they need time to get settled in. Not really sure what that means but they’ll be settling. After that, then I go in for another operation to get nipples put on, if you can believe it, this is an out patient procedure. And finally I will get the areolas tattooed on. No, I do not go down to the local tattoo parlor and have Axe tattoo them on, apparently there is a lady near by that does this for the surgeons who do not do tattoos themselves.
During this time I will be going through chemo and possibly radiation. If you could all pray for no radiation I sure would appreciate it. Here’s why. Radiation will shrink the skin and tissue. Why is that an important fact? Well, since I have already had surgery for the lumpectomy, they will have to take more skin on the right than the left, so I will already be limited there for expansion. Also, if I have radiation, they will have to over expand my right breast so that if I do have radiation and the tissue shrinks, both breasts will be the same size. Now I think I have been a pretty good sport up to this point but even I will struggle with finding the humor in having two different sized breasts for 6 1/2 weeks. Oh who am I kidding? It would be a total riot but I’d rather not find out how funny it actually is.
In any case, the total reconstruction time from the November 30th surgery date will be about one year. I’d also like to mention that my employer Envision is doing everything they can to help me through this difficult time and I am so grateful to them for taking away the added stress of typical employment issues that others may face. I am very lucky indeed. Again, thank you all for your love, support and prayers, I am so thankful to have you on my side and hope that this e-mail finds you all well.
Love to all,
Jen
December 5, 2006
Jen Mastectomy Update
Guest e-mail author: J.R.
Hello everyone. I am going to take a swag at updating you on Jen’s condition, and offer details of her procedure. I am sure I will not replicate Jen’s efforts, but we do want to get an update out, and Jen is not up to it yet.
First let me say thank you to everyone for your ongoing support, thoughts and prayers. We are truly blessed to have so much love from our friends and family.
Jen had her surgery on November 30th, and the short version is that everything went great, and Jen is doing well!
Ok, now in the Jen tradition…….the longer, more detailed version. As most of you know, we chose November 30 for the surgery date so Jen would be healthy for the Thanksgiving weekend, and the Bob Seger Concert. This was a great decision! The girls were all home for Thanksgiving, and each learned how to make a key part of the Thanksgiving dinner. On Saturday we bought our Christmas tree and decorated the house for the Holidays. Saturday night we went to see Grease at the Chanhassen Dinner Theatre. It was a great family weekend with much laughter and fun.
Monday was a very rough night, as the reality of the pending surgery set in for Jen. She was very scared and sad. Lot’s of tears, and very little sleep. Tuesday was a better day with the Bob Seger concert with our friends Dave and Lisa. The concert was great, and a good distraction. On Wednesday, Jen’s dad arrived to be with Jen for the surgery. He gave Jen a lot of strength when she needed it.
We arrived at Fairview Hospital at 9am for the 12:45pm surgery. Jen was wearing her standard surgery outfit of a Jack Lambert Steelers Jersey, Steelers sweats, Steelers socks, Steelers blanket that Steph made for her, and of course her Grinch slippers. We happened to sit in the waiting room next to someone who was 14 months into the process Jen was about to begin. Her name was Julie, and she must have had flashbacks to when she was in the same situation as Jen 14 months earlier. Julie even has the same plastic surgeon and the same oncologist. She was sent straight from heaven. She answered a few questions, offered up some words of encouragement, and then asked if she could give Jen a hug. That is the first time Jen, and everyone else began to cry.
Jen got called into the “care suites” for the usual pre-op prep. Jen had a very different look on her face than when she went in for her lumpectomy. More determined, scared and sad all at the same time. Big alligator tears rolled down her face as the nurse asked all the standard questions about allergies and family history etc. Jen would then make a joke or two. I swear, Jen is the strongest person I have ever known. Jen slipped into her hospital gown and robe…..very attractive I must say, and we were off to the breast center.
Jen’s dad joined us again for the long walk to the breast center. This is where radioactive isotopes where injected under Jen’s left nipple to identify the sentinel node which would be taken as part of the procedure. When they did this on the right side prior to Jen’s lumpectomy, Jen was numbed up. This time she was not, and she said the pain of the isotopes entering her breast was horrible. Apparently they are looking into new medications that would allow the Dr. to inject that after the patient has been put under right before the surgery which Jen thinks is a great idea.
We were then taken to the surgery pre-op area. The surgery scheduled was a left sentinel node biopsy with left mastectomy and a right modified mastectomy with auxiliary node dissection. Modified means they would also remove all of the auxiliary nodes in the right breast. We learned that the number of lymph nodes in a breast varies from woman to woman. Some have 16, while other may have as many as 36. Who knew? Dr. Guttormson would also put in a port in Jen’s left chest above her breast area. This port will be used for the Chemo treatments later.
Jen would also begin the reconstruction process by having expanders implanted beneath her chest muscles. They would save as much skin as possible during the surgery in prep for the reconstruction process. Dr. Luong, the plastic surgeon, arrived to ‘mark’ Jen for surgery. She used a black pen that I was sure to be a special ‘surgery marking’ pen. Turns out it was a Sharpie! She marked the bottom and tops of Jen’s breasts as well as the incision areas which were around the nipples and then towards the sides in a teardrop shape. They mark the breast area so they have a base line for reconstruction. Easy to find the tops and bottoms of breast’s when you have them……not so much when they are gone. Dr. Guttormson arrived to visit with Jen. She was in street clothes as it was her day off. She told us to expect about five hours of surgery and she was off to get into her scrubs.
As the surgery team prepped Jen, we could hear all the other patients around us getting prepped. It was then that Jen chose to listen to her iPod. Blue October and Led Zeppelin Physical Graffiti were her pre-op music choices. Reality really began to set in for both of us, and Jen was very emotional. I have never felt so helpless or inadequate in my life. What to say to your wife at this moment is simply not in the husband handbook. Somehow, “it’s going to be ok” just does not cut it. All I could do was hold Jen’s hand, tell her I love her, and hope and pray she finds some kind of comfort. It was now close to 12:45pm, and I am sure all of your prayers were pouring in to God for Jen. Jen smiled when I reminded her that Tom Mitchell told us to picture the Verizon phone commercial with the Network of people behind her. “Hi, we are here for our surgery!” We are so thankful for our friends and family.
They came to get Jen. A final kiss, I love you, and a squeeze of the hand, and she was on her way down the hall. I watched until she disappeared around a corner. I just stood there for about two minutes as all the activity of the pre-op area buzzed around me. I gathered Jen’s bag and joined her dad in the waiting room.
At about 4:30pm Dr. Guttormson found us and let us know that her part of the surgery went very well. She said the ‘flaps’ looked great and she anticipated Dr. Luong would have a great result too. Our friend Kerry Chase arrived with a box of cookies for the Nurses in the station Jen would be recovering in. The box had a great note on top to the Nurses thanking them in advance for taking such good care of her friend, and telling them a little bit about Jen. It was very thoughtful. And the advance nurse sucking up didn’t hurt when we moved Jen into a private room later! Our oldest daughter Nicky arrived with a blanket and an envelope of jokes that her 4th grade class wrote to cheer Jen up. This just in……4th grade jokes, not so funny. They did crack us up though.
At about 6:15pm Dr. Luong found us in the waiting room and said she was delighted with the result of her portion of the surgery. Jen was in recovery until about 8pm when we joined her in her room.
Jen was still very drugged up, but was awake enough to say she felt like she had been hit by a truck. Nicky drove Jen’s dad back to our house at about 8:45pm. I spent the night in a chair next to Jen. She was alert at about 11pm and confirmed this was the most pain she had ever been in. This coming from a woman who has broken her neck and has constant back pain from degenerative discs. Jen went in and out of sleep, but we were both mostly awake throughout the night.
Friday was a great day for Jen. She was in a lot of pain, but she looked and felt good all things considered. She was alert, talkative, and funny. Jen has drain tubes below where her breasts were which will be in place for about a week. (hopefully out on December 6) Friday Jen was moved to a private room and I spent the night again. This time there was a chair that rolled out into a cot. Nicky, Stephanie, and Jen’s dad were still in the room at about 10:30pm, and Jen was getting very tired. I pulled out the old Steve Molin line: “Oh honey, we should go to bed so our company can leave.”
Jen had taken the max of her meds by 11pm. She was in a lot of pain, so the nurse gave a shot of morphine at about 2:30am. Other than that, I think Jen slept pretty well…..we both did. On Saturday morning Jen was in terrible pain throughout her chest area. The nurse called the doctor to change to a pain solution Jen could take more often if needed. The oxycodone has helped a great deal. Saturday was a bad day for Jen. She was very loopy, and in much pain throughout the day. She rallied in the afternoon, and was discharged at about 5pm.
Jen chose our very comfortable couch with the reclining section in our family room as her home care center. It allows her to sleep sitting up a bit, and change positions when needed for comfort. I have joined her there each night so I may help with bathroom visits and meds.
Each day Jen is feeling better, and doing more ‘laps’ around our main floor area of the house. We have been waiting for the pathology results on the nodes and the margins of the area of the tumor. The results will determine if radiation is necessary after chemo. Since Jen has already had two positive nodes, two more would qualify her for radiation. Or if the margins of cancer were too close to her chest or skin, she would require radiation. Radiation would begin after Chemo and be every day M-F for six weeks. Radiation also affects the reconstruction in that it ‘shrinks’ the skin. They would then have to over expand the right breast in anticipation of this shrinkage. The doctors are good at this, but with so many variables the result is less desirable then if one does not have radiation.
GOOD NEWS! As I am typing this at 3:30pm on Tuesday, Dr. Guttormson called with the Pathology results. The scare is that they found another small mass about .6cm….about ½ of an inch in size. They had not seen this before in any of the mammograms, ultrasounds etc. If Jen had not done the Mastectomy, this mass would have been a recurrence, or defined as a new cancer. It is now out of her body. The GOOD NEWS is that all the nodes came back negative, and the margins were of a favorable measurement. Together this means that the Doctor and the Pathologist agree to NOT recommend radiation!!!! Dr. Guttormson also prescribed a bottle of champagne to celebrate. Who are we to not follow doctor’s orders!
Jen cried, in a very good way, when we heard the news together. Jen’s mom arrived today to help through Sunday. Jen’s sister arrives on Sunday so I am sure there will be much laughter around the house over the next couple of weeks. Next steps are about three more weeks of recovery. Jen will return to work during this time. Chemo will begin late December or very early in January
By the way, Jen looks cute as hell in her two piece man jammies with the button fly in front. Jen is an amazing woman.
Thank you again for all of your thoughts, calls, e-mails, gifts and cards. Jen loves them all. You will never know how much we appreciate your friendship and love.
J.R. and Jen
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