Monday, October 6, 2014

Hurry Up And Wait

      Thursday October 30th. That is the next big date for us. Becca will have reconstruction done on her breast. All looks really good and the plastic surgeon has high hopes for a very nice outcome. The other breast augmentation to match the reconstructed one won't happen until next year after the other one heals and settles into the shape it will be. If that makes sense lol. Since chemo has been over there really hasn't been much to tell you all. Becca's hair is coming in more and more and her eyebrows are finally there. She's more platinum now than blonde but I think it looks great. It will be interesting to see what it looks like after it grows out.
      I thought I'd catch you up on the financial aspect of this year. Yes it's taken it's toll and as long as the hospitals are willing to except payments then all will be fine in about 10 years lol. In all seriousness though I wanted to thank everyone who has helped. We really do have a lot of wonderful people in our lives and we can't wait to be able to pay it forward and help others. The turn out for the Brat Pit was wonderful however profits were lower than expected. I believe that was because of the last days derby format but I won't get into that. Still the proceeds will make a dent and we are very grateful!
      I bring this up because it is the last time I am. We will leave the fundraiser going and see what happens but I had a hard enough time starting it and now it seems to have stalled and that's OK! Right now we are looking forward to the future and next summer when Becca will be healed, looking and feeling good. We are getting on with life, making plans, you know, normal stuff. I know there will be long periods of no posts but I promise anything of note I will be on here writing to let you all know.
      Who knows, I may just keep this going. Letting anyone who wishes to peek into our lives in on what's going on. Xander started high school so I'm sure I'll have tons of stories to tell you over the next 4 years.
      I think that in the end it's those whose lives you have touched that defines who you are and what you have accomplished in he short time we have here. All of you have touched our lives. No matter how small or how large of a way we thank you. And we look forward to continuing to define who we are by helping others. Take care of yourselves and those around you. Cherish the time you have and make the most of it. Till next time...

Sunday, September 14, 2014

We'll Stay On 19

      Becca and I have made a decision about radiation. This post is about that and in her words because how can I express the thoughts in her head better than her. I have been her sounding board and have given my opinions on this but let's face it, it's her life and her body. Whatever she decided I would back her 100%. I am thrilled with the decision she made though :)

      We got a second opinion from another radiation oncologist on Thursday who had basically the same opinion as the first radiation oncologist we saw:  I'm in the grey zone; because of my age would like to overtreat instead of undertreat; I'm one of those cases where they just don't know if radiation is truly necessary after chemo was done first, and I went node positive to node negative (they don't even take pathology results into consideration because at this point they still treat based on initial diagnosis, but I could be part of a clinical trial that is trying to answer this very question.  Same thing.  About the same numbers.

Here's what it boils down to:
Right now, my chance of getting cancer again ranges between 10%-15% (one of the docs said closer to 20%, but I trust the one who was holding a medical book with actual numbers and graphs)
If I were to have radiation the number would decrease to about 5% or so.
On the other hand, if I had radiation, my chances of getting lymphedema ranges around 20%-30%.  (One doc kind of poo-pooed it off, the other was pretty serious about it.  "Radiation comes at a cost" is how she put it.)  There are also major skin issues that could pop up, my reconstruction would not only be postponed to next summer, but the scar tissue created by the radiation could make the reconstruction more difficult and look less natural.  Not to mention chances of developing other cancers, heart and lung issues, etc.

So, do the risks outweigh the benefits?  What would you do?

Chris and I have been dwelling on this decision for weeks now.  I think we've shed just as may tears over making the "right" choice as we did when I first found out about the carcinoma.  Here's what we've decided.

No.

I'm done.  No more.

Going from a 15% to a 5% chance just isn't enough for me to risk all of those side effects.  If I had a 30% chance and it dropped down to 10%, then yes, by all means.  This just isn't enough for me.  I want to get on with my life!  Chris equated it to blackjack and I can't remember exactly how he put it, but things have been going so well so far, we don't want to take the chance with the odds they are that the one last treatment that was supposed to make me better makes the rest of my life miserable.

I could be a part of the study, sure.  It would help women in my situation in the future and I love that, but I want to make my own decision about what I do here.  The outcome could be in my favor, but I also have an equal chance of having to go through radiation.  Those are odds I don't like.

We don't know if cancer will rear it's ugly head again.  I would have that chance whether I had the radiation or not, but in the meantime I know I'm feeling good, I'm happy and healthy.  I'm going to be on hormonal therapy for the next 5-10 years to help suppress any possibly dormant cells from waking up, and I'm going to be taking such good care of myself and doing everything possible to try to prevent it - but who knows.  And if it does come back, treatments advance in that field so quickly that perhaps they'll know more and have a better way to treat it.

Anyway, that's what we finally decided.  Now I just have to grow the balls to call the doctor and say no thanks.  I hope you all can understand this decision, but to us, the odds just aren't worth it.

Now, we can all move on, I can start my hormone therapy and schedule the completed reconstruction.

      The blackjack reference has to do with the title of this post. She was dealt a 19 after chemo and surgery and unless you are 100% positive you can get a 2 on that next card odds are you're going to bust. We don't want her busting now do we?

Thursday, September 4, 2014

No Longer Borg. Now a Water Balloon.

      Hello there my little gumdrops! Been awhile huh? Sorry about that but it's been no news is good news around here. Time to catch you up on the little milestones and any news we may have for you. Ready....Set....
      Drains! They are out. First one was out a week out after surgery. Second one took a little longer but was finally removed around the 19th. The second one was like foot long! I will say I won't miss emptying those. PT started on the 12th and After a lot of pain and a few frustrated tears shed I can now say she has almost full range of motion and is feeling tons better. Planning on going back to the office next week. She has been working from home but now she is confident driving and the docs have given her the ok. She still has a weight restriction but I think that will be lifted sooner rather than later.
      We worked the Brat Pit at the walworth county fair and although Becca had to skip the last day I think she did really well. After sitting around for a month and then be up and working like that I was surprised she lasted the two days she did. Overdid it though and welcome back recliner heating pad and good ole Mr. Valium. This week we finally saw the Radiation Oncologist. I'm going to try my best to explain everything to you here but I'm sure I'll miss something.
      Again she has the option to enter a trial. Created for people in her situation (the grey area) who could have radiation or not in the effort to ascertain if radiation after mastectomy should be the standard of care anymore. So she can participate in the trial and be randomized again.Then she would either have radiation or she wouldn't. She can just choose to have radiation or choose not to outside of the trial. There is an increased risk of lymphedema with radiation. Something like 15-20%. But with her type of cancer, and the fact that she is at the higher end of basically saying YES you NEED radiation, the recurrence rate is 12-15% after chemo.
      Still he was impressed with her outcome from chemo and surgery. I could tell he was. And I think he should take this into account. She's 95.5% cured here. There is ALWAYS going to be a chance or the cancer returning because it's cancer. It's always going to be in the back of our minds. What we still want to know is IF she has radiation and takes on all the small risks as well as a bigger risk of lymphedema how much does that 12-15% drop? In my opinion if it's not down to less than 5% I'd say no way. But that's me. There is a reason they are doing this study in the first place. They have found that women like her don't necessarily NEED radiation and now they want to back that up. And they should. I just don't want her to risk it.
      Add in the fact that she wants this over with. Radiation would postpone her reconstruction for as much as a year! Superficial I know. This is small potatoes when comparing the risk of death I know that too. But with where she is at I can't say I'd blame her. By the way for all you wondering the size will remain the same lol. Not for a lack of trying on my part mind you. I mean come on a free boob job? They can't charge us anymore this year so if she ever wanted bigger or smaller now would be the time to do it right? RIGHT? Help me out here!! Nah it's all good it's fine :) (seriously call and tell her bigger is better).
      We have more literature to go through and will be talking with another oncologist today for a second opinion so we'll see where we are at the end of this week. If she decides on no radiation she will start taking her tamoxifen, a couple more fill ups and then then surgery. Oh yeah. The water balloon part of the title. Bet you thought I'd forgotten you silly gumdrop. I did. Sue me we gots nothin lol.
      She had a tissue expander put in and filled initially with 150 CC's of fluid. Every week starting a few weeks back we going and they filler' up. Like a water balloon in her chest. They add CC's of saline to the point that the skin has stretched enough to accommodate the implant. Each fill up is 75-100 CC's depending on how the skin looks. Last one was 75 CC's. When the desired size is reached surgery would be scheduled.
      Till next time er'body. Hope to have an answer on radiation with the next post and I will try to make it quick.

Friday, August 8, 2014

She Is Borg?

      The title may catch a few (or more than a few) of you off guard saying "huh"? You'll understand in a minute. Continuing from my last post I got a call from her around 10am the next morning saying that she was visited by three ghosts, the first, arriving at midnight,er, wait wrong story. She was visited throughout the night by doctors and students. The nursing staff was awesome and she was so relieved (pardon the pun) to get the catheter out around 3am. Walking was a tad uncomfortable to say the least. She told me that she was able to leave sometime between 11:30 and 1PM. So naturally I was there at exactly 11:30. If you'll remember I am anything if not punctual. It's a curse. She was just about to get a visit from the pharmacy tech to go over medications she would be taking. We were shown how to take care of her drains and her IV was removed. She was dressed and we were out of there by 12:30. Now the drains reminded me of borg implants from Star Trek. Non biological equipment surgically attached or implanted in ones body. And I was going to have to handle the drains on a daily basis.
      Honestly there are just 2 tubes coming out of her left side connected to drainage bulbs that look like transparent grenades which are seated in a special camisole which has pockets on the inside. But this is the first thing I thought of. I like Star Trek. Can you tell? Especially the episode when Picard was assimilated by the borg and became Locutus...sorry off topic. It's hard to describe emptying the drains.  After emptying the grenade into the measured container CAREFULLY pinch the tube near the insertion point and with your other hand pinch the tube and slide your fingers down the length of tubing to expel the fluid in the tube all while not tugging on the tube itself otherwise screaming and punching will occur. Once done squeeze the grenade and recap it so that suction will again take place. Replace the grenade into the pocket of the camisole and repeat with the other grenade. 2-3 times daily and record the output. To have the drains removed her daily output should be between 10 and 20 cc's. Here is a helpful graphic for you :)
      We got her home after a somewhat bumpy construction laden car ride which she tolerated rather well. Drugs are wonderful things. I got her setup in the recliner and prepped the apartment. TV tray next to her chair with her kindle, phone, water (lots of water) and you know the little cups that you get with NyQuil for measuring dosage? Yeah I used that for medication dispersal. List of meds on the fridge and times taken. I was set and organised. First two nights she slept in the recliner and then tried the bed. Nope, back to the recliner. Then her back started hurting in the mornings. Back to the bed with a different pillow configuration. Better but still back issues. To the recliner which I fear will be here sleeping partner for the time being. 
Need one of these...anyone??

      The dogs, who LOVE to cuddle up with her in the recliner on a normal day have been a challenge. Xander has been helpful keeping them at bay but sometimes Belle finds a way to jump up there before you can stop her. Here new middle name is DOWN. Molly is too big but has in the past jumped up to try and pretend she is a lapdog. Usually puttle a paw on the arm of the chair as if to ask permission. She hasn't been a problem thus far.
But I'm comfy

      Becca has been off her pain meds basically since Saturday. But I have a chart on the fridge, with numbers, all organised and neat. I said this in my head. I knew it wouldn't be long before she resorted to just Tylenol for her pain needs. Always been like that. She's been up and walking probably more than she should be but you can't keep this woman down I tell you. I have stopped asking how she is doing because she hates that. We went to see the plastic surgeon yesterday and the nurse removed the first drain. Yay!! One down and one to go. Probably next week when we see the surgeon. He wasn't there this last time. We are cautiously optimistic that if she doesn't require radiation that she might have her reconstruction sometime in September which would be fine with her. 
      Oh forgot to mention. Was helping her wash her back the day after she came home and found this little word on her right shoulder. Not sure what this was from but we had a good chuckle over it. I mean it's on her BACK. Still trying to figure out why. You'd think it would say NO as in don't cut on this side.

      She desperately wants to be fully healed so she can get back in shape. She's hating how big she's feeling. Knowing her she'll shed like 30 pounds by December. Today she is insisting we go to the movies. Guardians of the Galaxy. She was afraid she wouldn't be able to see it in the theater but she's feeling so good and little to no pain so off we go. Speaking of it's time to get ready. Till next time my little gumdrops.




Monday, August 4, 2014

Honestly It's Not Too Bad

      Oh where to begin. Let's rewind to the day of surgery. Left the house in good spirits around 6:30 and because of traffic got there about 7:45. Only had to wait a few minutes and we were brought back to her day surgery room where she changed and vitals were taken. She was put into a nifty gown that was hooked up to a personal AC/heating unit. How awesome is that? She got to regulate her temp so when she had a hot flash she could lower the temp. She now wants one at home.
      Xander and I went off to have a bite to eat while she was being prepped. She went to radiology to get her nodes mapped and was back in about an hour. She wasn't in the room for 10 minutes and a nurse walks in. "They are ready for you." she says. This was about 10:30. Her surgery was scheduled for 12:25. No time for meaningful goodbyes. In comes the anesthetic team for consent forms to sign. A quick kiss and away she goes. I had this feeling like I've given you our money and you have taken my wife...somewhere. I swear officer I did not hire them to kidnap my wife.

      So begins the hours of waiting. I decided to take Xander out to McDonalds for a little normalcy during this time and upon our return I get a call from the hospital. So soon? Did they have to stop for some reason? Is she hemorrhaging? A million other scenarios frashed through my head in a second. The nurse told me that Dr. Kong had removed 4 nodes and that the biopsies were negative. NEGATIVE for cancer!! I was so happy I couldn't think straight. Not good when driving. Composed again I said thank you and hung up. I told Xander the news and he smiled. I was a bit teary eyed but wanted to get back asap. At some point I got turned around and we were heading away from the hospital. Remember couldn't think straight? So I turned around and headed back to...wait.

      It was around 2 that Dr. Kong came out and said everything went perfect! The skin and tissue looks great and that the pathology on the tissue would be done with results on Monday and she is very hopeful about those results. She didn't come right out and say it but I could tell she really wanted to say that with a negative result from the breast tissue that radiation would not be necessary. This is extremely good news to me. Becca not to so much because for her, if she didn't get radiation, she would always wonder in the back of her head if she should have. Especially if it comes back. Got some more thinking to do. Can't do this right now.

      Now it's a waiting game again with the plastic surgeon. Now I was told that it shouldn't take more than an hour and he had been in there before Kong came out so I'm figuring around 3ish. He came out around 4 and for anyone who knows me knows I am a planner and I keep to schedules. Becca hates it but it's what I do. So that extra hour was pissing me off and making me worry. He finally came out and said it couldn't have gone better! Yes! Of course he followed that up with a big ole "but". Crap! No fair. Can't follow up something like this with a "but". How about I try that with "But... you're beginning to damage my calm!" Apparently there was a slip of the scissors when cutting the adhesive around her other breast and a small inch long or so cut was made. That was it. he felt so bad about it and I was like "That's it???" I'm kinda OK with that. Seriously with all the things that could have gone wrong and you make a boo boo like that? No problemo dude!

      Now we wait again being told that we should have a room assignment in about 20 minutes and she would be in recovery for about an hour and brought up to her room. People need to stop giving me times. An hour and a half later I ask about the room and the woman says "oh right, yes, she will be in room 13 (Really? 13th floor too?) 7th floor north tower. Still wondering what was going on with her we head over and after buying a bunch of balloons that I was told I HAD to get (thanks facebook) we got to her room about 2 minutes before she did. She looked ok. Drugged with a droopy left eye but OK! We spent some time catching up with all that had been done. Results and how she's feeling and left around 7 to let her get some rest.
      In the exciting conclusion...our trip home and sleeping arrangements, drains (gross) and how we are feeling about the change in her body. More to come. :) Right now we are just so very happy!!




Friday, July 25, 2014

The Road Ahead

      Yesterday we traveled once more to Froederdt and met with a couple nurses to explain EVERYTHING that will happen next Wednesday and beyond. Had voices coming at us seemingly from every direction explaining the timeline, restrictions after, what to do before and something about flying but it's not important and that's why they don't explain the problems with flying anymore. (?) All I know right now is that she has 3 days before she has to be a good girl. So anything she wants to do or have before Tuesday night I'm making it happen.
      Wednesday morning at 5 am we will be getting up and ready. Her bag will already be packed with her essentials (Kindle, charger, phone etc ;)) along with the fashionable camisole they provided for comfort and to hold the drains. We have to be there at 7 so Becca can get the sentinel nodes identified through mapping using a radioactive dye and the surgery is at 12:25. Should take about 3-4 hours. During the surgery the surgical oncologist will locate the sentinel nodes and remove 2-3. These will be sent to pathology while the mastectomy is done. Once the lab results come back hopefully negative that will be that and the plastic surgeon will step in and place the tissue expander. If the results come back positive the axillary nodes will be removed. This would increase her chances of getting lymphedema.
      Plenty of restrictions after her hospital stay of 1-2 nights. Pain management is a big part of her coming home. She's the kind of person who won't speak up about pain so I've been reinforcing the fact that she will need to VERY honest about her pain. No playing the tough chic. The drains (2-3 of them) will be in for a few weeks and I get to drain and record the volume 4 times a day. FUN! It's actually quite easy so no worries. The reconstruction won't be till some time after radiation after she is fully healed from it's effects. This could be a year or more. Until then she will have the expander in place to hold the shape of the breast. A couple weeks after surgery we'll go back and the plastic surgeon will inject saline into it to get the right size. We'll go and do this a few times because they can't inflate it all at once.
      Oh yeah she can't drive for the first few weeks and has lifting and arm restrictions. I am the cook for awhile so I hope they can get used to take out lol. In other family news I am happy to report that Xander has received about 65 or so cards for the card shower! He still has no idea what is going on and we have only given him about 15 over the course of the last week. We're saving the bulk for his birthday. Everyone who has sent one has been so wonderful and have written so many nice comments about him and the type of man he's becoming. Thank you to everyone who has sent one and if you know someone who hasn't please question them about it lol. It's not too late to be apart of this!
      I'll be providing updates on FB the day of surgery but probably won't be making another blog post for about a week after. Let you all in on how things are going with Becca and her road to recovery. Keep thinking NEGATIVE thoughts (you know what I mean) and keep her in your thoughts. Thanks again for reading and keeping up with us. Much love to all of you! Until next time my little gumdrops...

Thursday, July 17, 2014

13 Days Till The Great Boob-Off!

      I shouldn't say boob-off as she will still have it. I guess they take like a larger version of a classic ice cream scoop and just scoop out all the tissue. The expander will go in and she will have to go back every week or so and have it filled more until it's the size she wants (no not bigger unfortunately ;) ). She will be in the hospital 1-2 nights depending on how she feels. I told her take the extra day if she wants to but of course she's thinking about Xander and doesn't want to come home ON his birthday. Isn't she a peach? Much like her head I guess but the hair is a bit longer and darker now.
      Radiation will take place probably the end of August or first week in September. After that, well, not too sure but what we do now know thanks to her wonderful plastic surgeon is that the actual reconstruction will be a year to a year and a half from now. This news SUCKED!! I felt so bad for her. All we knew before this was her oncologist saying she should be all done by thanksgiving. We assumed all done ment ALL DONE. Talk about a bummer. She'll get used to the idea in time, just like her head and the hair loss.
      Now it's a sit and wait kinda thing. We are going to try and do some stuff the next couple weekends to make up for her losing the rest of the summer. Chicago this weekend and next weekend we're still deciding on. We are throwing Xander a card shower for his birthday since she won't be up to celebrate. 18 cards so far! We are excited to be doing this for him. He's been amazing throughout this whole year. If you haven't heard about this and would like to send him a birthday card the address is 1706 Birchwood st. #6 Delavan WI 53115.
      Sorry for not getting a post in for awhile. I'm sure with all the new things happening with the surgery and her being home for a month I will have more material to work with. Thinking I might get her a bell to ring when she needs something. That experience could be a post on it's own! Be well and stay safe! Until next time America. (Points to whomever can name who coined that phrase)