Monday, September 28, 2009

Fun! Not Fun. Fun! Not Fun.

We had a great time last weekend when we went to visit the Maynors in North Carolina!  We always have fun with Courtney and Lennie and Annabel is finally old enough to play with their daughters Willow (5) and Laurel (3).  We arrived late on Friday night.  We spent Saturday visiting and the day somehow flew by fast.  The girls did a great job of entertaining each other while we visited and relaxed all weekend long.  They have 5 acres and Annabel enjoyed playing both inside and outside.  The girls took turns driving her all over the place in their Barbie Jeep and she got to meet some chickens and their two pigs and dogs, including Frisco The Taxidermy Dog, pictured here.  Courtney's boss gave her Frisco for the girls and Court suspected that he might be a stuffed real dog.  Suspicions confirmed when his hair started falling out and he was examined closer.  This is definitely the strangest "toy" I've ever seen.  Frisco creeps me out!  I think that Courtney and Lennie were trying to phase him out because when we arrived, he was sitting on a high shelf in their laundry room.  Annabel saw him right away and kept telling me "dog" and pointing up.  He made his way down from the shelf eventually and spent the rest of the weekend lurking in corners and staring.  Shiver!  Anyway, the weather was great, so we spent Sunday morning and into the afternoon lounging outside and watching the girls play together.  I LOVE this picture of them together, even though Annabel is picking her nose.  I think it really captured the moment! 

I was feeling a little worn out on Friday before we left for NC, but I assumed it was because I was so busy trying to get ready to leave.  I felt a little weak all weekend, but again, chalked it up to the excitement of (finally) getting out of the house.  By Sunday, my chest hurt really bad and I was not feeling well at all.  By the time we made it home, I had a fever and felt awful.  I called the doctor on call, who told me to start antibiotics right away and follow up in the morning (Monday).  We called Scott's Mom and asked her to come up because I knew that I wouldn't be feeling great even if I did feel better.  I went to the doctor on Monday morning to get checked.  They weren't able to draw blood from my port, so I had to go to the lab, but there was a misinterpretation of the nurse practitioner's orders for a blood culture and they tagged me for a possible blood transfusion!  (They weren't going to give me a blood transfusion, but let me know it was a possibility...I would have had to go to the hospital, etc.)  Anyway, I texted Scott to let him know what was going on and he was there about 10 minutes later.  Count this rescue #1 for the week!  I was glad he was there when I saw the nurse practitioner though.  She apologized for the mix-up.  My counts were really low, but she felt like I had already hit the low point and that my body was working hard to get better.  She ordered up some IV fluids and the blood culture that I was supposed to have initially and said that she would call me on Tuesday to let me know if I had a bacterial infection.  I spent a few hours in the chemo room getting fluids to rehydrate.  I felt a little bit better after that, but my chest was still hurting.  When I got home, I asked Emily if she would take Annabel home with her to spend the night.  I hate to be without her, but I just really didn't feel like I could do much more than sleep. 

On Tuesday afternoon, the nurse practitioner called to say that I did not have a bacterial infection.  I still had a low fever on and off.  She instructed me to call her on Wednesday if I still didn't feel well.  I called first thing in the morning.  I still had tightness in my chest.  I went in to the doctor and they still couldn't draw blood from my port, so I had to go to the lab to have them get it from my arm again (3 pokes in the arm so far for the week).  My counts were higher, but not good enough for my scheduled chemo on Thursday.  The nurse practitioner was puzzled by my chest pain and ordered a spiral CT scan to make sure that I didn't have a blood clot and also let me know that this would show if I had bronchitis or pneumonia.  Luckily, the scan showed up negative for all 3.  I had a meltdown in between the doctor and the scan, so Scott left work to take me for the scan (rescue #2).  Annabel was still in Lavonia with Emily.  Karen was on her way from Chicago.  I was still scheduled for chemo on Thursday morning.  Scott went to pick Annabel up in the evening and later, I picked Karen up from the airport.  I was feeling better, but......

On Thursday morning, Karen took me to the doctor for my scheduled chemo.  No blood from my port again, so I got my 5th poke in the arm for the week (#4 for the dye at the scan).  Unfortunately, my counts weren't high enough for me to get treatment.  I got an appointment for Friday morning to go to the hospital for a port-a-gram to find out why they can't get blood from my port.  Karen and Annabel and I got to the hospital and waited.  When they called me back for the x-ray, Karen and Annabel went to get a coffee and take a walk.  I had assumed that this was just an x-ray, but I was taken to a room and had to put on a gown and lay on a gurney.  When they came in to wheel me to the x-ray room, Karen and Annabel were standing at the end of the hall.  They went to wait in my room while I had my x-ray.  It turns out that the cath on my port somehow got sucked up into a small vein.  The radiologist came in and explained that this can happen and they fix it by running a cath up through my groin to where the cath is now and "snaring" it and dragging it into its proper place.  They are going to stick a hose in my groin and roto-root!  YIKES.  They planned to do it right then and there, but I asked them to wheel me back to my room so that I could send Karen and Annabel home and call Scott to come to the hospital.  They do this procedure with local anesthetic and versed or something, so it is conscious sedation.  Really, I just thought it was an x-ray!  I had a(nother) meltdown.  I am not about asking "what next", but this is just something that I didn't expect.  So, they were getting ready to prep me for the procedure and Karen and Annabel left.  About 5 minutes later, one of the girls from radiology came in to say that she talked to my doctor and the procedure was off.  She wanted my counts up before I had my port fixed.  It was a rough day, but I was glad to get the heck out of there, even though I have to go back.

I have been relaxing at my Dad's house for the weekend.  Karen is in for 10 days to help and we were planning to visit next weekend before she flies home, but I am going to be recovering from my postponed chemo and will likely not feel like travelling then.  We decided to come here late Friday.  It is a good distraction!  I was worried about being away from the doctor because of the crazy week, but I spoke with the nurse and she said it was ok for me to travel as long as I was taking it easy and not exposing myself to germs.  So I have been roosting in my Dad's chair, visiting and playing games on my iPod while everyone is in and out.  We have had great meals and good times.  I miss Scott when he isn't here!  I am sure he needed a break and I know he enjoyed having friends over to watch football on Saturday.  We are headed back to Greenville this afternoon for a busy week of cancer crap.

This week's schedule is about as fun as last week's, but at least I feel much better!  I have to go to the doctor first thing Tuesday morning to have my blood counts checked to make sure I'm good for the port procedure.  If all is well, I am scheduled to have that done on Wednesday afternoon.  Then I will have chemo on Thursday and the Nuelasta shot on Friday.  After that, I will probably be down for the count for a few days.  Despite the trouble and complications last week, the nurse practitioner has assured me that she expects my last 3 treatments to be uneventful.  We just hit a bump in the road!  She attributes my fever/chest pain to low blood counts.  I am not sure that the port and the chest pain are unrelated, but I doubt anyone will be able to tell me for sure.  I am just glad to be feeling better. 

Unpleasant as it has been, one thing that I will say is that there was not a time this week where I didn't feel like I was getting the best care.  The nurses at the cancer center are wonderful.  My doctor was out on jury duty and I saw the nurse practitioner, who I felt was very thorough and personable.  The interventional radiology team at the hospital was great as well.  I felt like I had about 7 people on my case and they were good from the get go, but were sensitive and reassuring when I got upset over having to have my port "fixed". 

I dread chemo, but at the same time, I will be glad to get back on track.  I'm happy to have Karen here to help out, keep me company and distract me from the bad stuff!  I apologize for unreturned phone calls and emails lately.  I got a little overwhelmed last week, but I hope to catch up on correspondence soon!  As always, I appreciate the thoughts and prayers!

Tuesday, September 15, 2009

Tuesday Update

Here are some pictures from last week of Annabel being silly.  She is trying to lick me in the 2nd one...and notice that she also has me by the neck!  The 3rd picture is of Annabel laughing while eating M&Ms.  She put on quite a show! 
Let's see....last post, I was waiting for Kim to arrive.  She came and spent Saturday through Wednesday with us and we had a nice visit despite chemo.  We did a jigsaw puzzle.  Shockingly, it was only missing 3 or 4 pieces when it was all said and done.  She made me leave it on the coffee table until after she left.  I gave Annabel the task of pulling it apart and putting it back in the box, but I think Scott ended up finishing for her.  Kim dragged me out of the house on Wednesday to go outlet shopping.  I won't say that I was entirely humorless when she was here, but I am sure that I was not the greatest company. 
As far as my last treatment, I can feel the cumulative fatigue for sure, but I had fewer side effects with the A/C than I had with the taxotere.  I am not sure if it was actually a little easier or if I was just so terrified of the new stuff, but I definitely didn't miss all of the aches and pains from my other treatments.  I was mostly just tired and nauseated.  I never threw up, but I had a constant morning sickness feeling for about a week.  I had to take more medicine than I would have liked, but that is usually the case.  My appetite is off.  I am still eating, don't get me wrong!  But I have a hard time deciding what I want and if I choose wrong, I usually pay the price with digestive issues (nice!).  My counselor at the Cancer Society sent me home with some Ensure and Carnation Instant Breakfast and I have been drinking the Instant Breakfast some.  It tastes pretty good I guess and has more nutritional value than all of the noodles I have been eating.
I have been going to the Cancer Society whenever they have group support meetings and am also meeting with the counselor outside of that.  I find it very helpful; it's a nice break for me and the people are great.  The counselor is wonderful.  They also have snacks!  There is a breast cancer support group that meets monthly, but I missed this month because I had chemo that day.  I have gone to the general support group twice now. 
Last week I met with both the genetic counselor and a plastic surgeon.  My appointment with the genetic counselor was just a follow-up to discuss my BRCA1 positive test results.  Kim also had an appointment to have her genetic test.  I think she gets her results next week.  The plastic surgeon was interesting.  He thinks I am a good candidate for a TRAM surgery, but my oncologist has already told me no.  She said that it is too much surgery.  TRAM is when they take a hunk of fat from your stomach and make new boobs.  They also thread some stomach muscles underneath to the boobular (not a medical term!) area.  Please note:  I am not a doctor.  This is what I understand it to be and I was also maybe medicated while I was there and was also maybe feeling really queasy, so this discussion almost made me barf.  If you want to be really grossed out, ask Scott what he said about the bellybutton's role in all of this.  Just thinking about it makes me feel icky!  So, aside from the fact that I was already told that I shouldn't do this by my oncologist, I sort of feel like my stomach muscles belong in my stomach and though I like the idea of getting rid of my belly fat, I do not want to be cut from hip to hip.  Besides, the "bonus" tummy tuck would surely just make my hips, thighs and butt look even bigger!  The other option is implants.  Sign me up!  I can't have immediate reconstruction because I have to have radiation.  When I have my mastectomy, the plastic surgeon will work behind my surgeon and put tissue expanders where my boobs were.  Tissue expanders are like implants, but he said that they are shaped differently.  They start out small and over the course of a few weeks (?), the plastic surgeon will fill them up with saline so that my body can get used to the new ones (sort of like when you get spacers before braces?).  I can keep the tissue expanders indefinitely and will probably have them for quite a while since I can't get my implants until after radiation.  I also have the Avastin treatments, so I'm assuming that I have to wait until after those are done...and then some because I have to be off of that for quite a while before any surgeries.  It's good news because I won't be boobless for the duration.  And the plastic surgeon says that it is good to keep the tissue expanders in for a while so that my radiated skin can soften up some before I get the real implants.  I asked around for recommendations and this guy's name came up every time, so I am going to assume I am in good hands.  I like him and I thought that he was thorough with my consultation.  He also discussed contingency plans if my radiated skin doesn't heal and finishing touches, like nipples.  Yay! 
This past weekend, we were pretty social, which is a change!  Mario and Shannon cooked us dinner on Friday night.  It was awesome and I enjoyed spending time with friends.  On Saturday night, we had Mario and Shannon and Steven and Andrea over for brats and football.  Scott did all of the cooking, but it was really great to visit.  Annabel surprised me by going to bed (even though it took an hour to get her to sleep!), so I was even able to enjoy some time with adults!  It was really strange that we were watching the game and she was playing and pulling all of her toys out (read: making a mess).  I guess it was just another reminder of how fast time flies because last year, she was still a little baby.  She was 21 months old on Sunday! 
I am getting ready to put us in danger of being late for Gymboree, so I need to finish up!  I am looking forward to our weekend trip to visit Courtney, Lennie, Willow and Laurel.  Can't wait to see them and it will be so nice to get out of the house!  Change of scenery!  And next week, Karen is coming back for a visit!  I have plenty of stuff to occupy me and keep me from thinking about my next chemo.  Ugh.
Sorry for the lag between posts.  I never think I have anything to say until I start saying it.  I feel like I spend all of my time in the house lately.

Saturday, September 5, 2009

#5 DONE!

I had my 5th treatment on Thursday, the first of 4 of the A/C combo.  So far, I feel ok.  With my last treatments, I was down for the count by now and while I don't feel great, I feel ok as long as I am sitting still.  Otherwise, I am nauseated and dizzy.  So I am just going to be still until it passes.  I didn't get the Nuelasta shot this round.  That has caused me a lot of pain in the past, so it is one less group of side effects to struggle through.  So as worried as I was about A/C, so far it is not so bad.  My oncologist also said that I was on a very high dose of taxotere, so really, my side effects might be less hellish for these next treatments.  She did point out that I will have cumulative fatigue, but I already knew that.  I am feeling optimistic at the moment.  They put an anti-nausea in my infusion on Thursday called Emend.  It is a 3 day program, so I took a pill yesterday morning and this morning.  No more Emend tomorrow, so I hope the nausea can be controlled with my other prescriptions.  My appetite is not great; I am trying to choke down some bland foods.

My tumor continues to shrink.  This time, it measured the same, but my oncologist said that it is getting smaller and she can feel that the properties are changing.  So that is good news.

On Tuesday, I have a follow-up appointment with the genetic counselor.  I have been putting this off because I know that I will learn about statistics and survival rates and things like might be stuff that I don't want to know, but I am going to go anyway.  I also have a consultation with a plastic surgeon on Tuesday afternoon.  He's probably going to take pictures of my boobs!  Ha, ha.  I have already played out the boobs don't really look like this!  They are all wonky and shrunken because of the breastfeeding!  Ssshhh, don't tell Annabel that she ruined my boobs before I found out about the cancer.  Not that it matters; when it's all said and done (mastectomy), I will be a blank canvas! 

It's football time again!  Scott is off to watch the game with his boys this afternoon.  Annabel is spending the night with her Mimi and Grandaddy.  I miss her terribly already, but I am sure she will have a fun time.  And Kim will be here this evening to keep me company, too.  We are going to do a jigsaw puzzle before Annabel comes home.