Hello out there,

 

This last week has been just fabulous.  I continue to be amazed at how much love and caring we are receiving.  So much has been done for us, and it just blows my mind.  As unlucky as we have felt that I was diagnosed with breast cancer a second time, the good fortune we feel to be surrounded by such wonderful friends and family is so much greater.  It doesn't take a crisis to realize that, but it sure does bring it into sharp focus.  Every one of you means so much to us.

 

In an amazing show of solidarity, many have shed their locks in the past few weeks.  Brian is sporting the hairless look quite well.  Right when I was first losing my hair, a couple of our friends Joe and Luke shaved their heads.  This last week, my friend Betsy (AKA the Tit Knitter) cut hers short and donated the rest to Locks of Love.  A friend told me about an Everett Firefighter that I have never met, but who she has kept updated on my story, shaved his head.  One morning a group of Kirkland Firefighters that Brian works with asked that I come to one of the stations to do the honors of shaving their heads.  A couple more of them that couldn't be there have sent pictures of their bald heads along with some funny emails.  And Bellevue hosted a head shaving event that was bigger than we could ever have imagined.  The event honored me as well as Tanya McNeill.  I work with her husband John, and she was diagnosed with breast cancer shortly after I was.  By the time we finished, we had relieved 35-40 guys of their hair.  There were some very nervous guys who sat in the chairs anyways.  There were also lots of smiles and hugs, too.  Guys from all over the department are now bald- a couple of retirees, a Deputy Chief, guys from Fire Prevention, the guy with the most years in the dept (37 years!), a dept chaplain, and so MANY guys from the line......... Hopefully, you have all been able to see the video that was put together.  - I get teary eyed every time I watch it.  One of the senior guys I talked to afterwards said he had never seen such a bonding event in his whole career. 

 

One of the other Bellevue guys that couldn't be at the shaving party waited for his wife to get home with the clippers in his hand.  As she walked through the door, he said "Look honey!" and shaved a big swath across the top of his head.  When she screamed "What the hell are you doing?" he told her why.  As soon as she heard, he said she had fun finishing the job.  A lieutenant from one of the stations couldn't be there Friday, so had shaved his ahead of time and proudly displayed it at a gathering Thurs night.  Yesterday, I was driving down the freeway in Bellevue, and I heard a honk.  I looked over to see a guy in the van next to me pointing at his bald head and giving me the thumbs up.  I think it was a guy that was my acting officer for a short time before I had my surgery.  It was so funny. 

 

Every one of these bald heads looks incredibly handsome to me, especially my sweet hubbie's!  I love to kiss and rub it.  I'm sure I'm partial, but you can only imagine how deeply this has touched me.

 

Right after I was diagnosed, I could not sleep through the night.  After adjusting to the news, I once again was able to sleep.  After starting chemo, I found I was waking up again between 3-4am every night.  I found I was feeling really warm and even very sweaty a couple of times.  It just dawned on me the other morning what is going on.  Chemotherapy is really hard on the ovaries.  During my first round of chemo, I had a temporary menopause that lasted about 6 months.  I think that is what is happening again, but being a bit older now and having gone through chemo twice, it is likely that this may be it.  I did some reading and sleep disturbances even without hot flashes are normal.  I must say it's not that bad because I am able to get back to sleep.  I find I am not needing my warm fleece hat at night these days because I end up pulling it off during the hot flashes.  It's so strange to all of the sudden have this happen.  I can't ever do hormone replacement due to my breast cancer history, so I will see a Naturopath to figure out some natural remedies for the symptoms.

 

I have felt so great this last week.  We went skiing twice, I spent a day at the spa with my group of "hot fire chick" girls, have got some decent workouts in, did some dancing one night an annual departmental event, and of course the head shaving party.  I will have to remember how good I feel now as I go back tomorrow for more chemo. 

 

Thank you all for standing by us through this ordeal.  You make it so much easier us to keep walking down the path we need to take. 

 

 

Things did get better after that miserable night.  Brian continues to experiment with plain food when I am feeling queasy.  Luckily, I have not actually vomited with this, but the queasiness goes on for 5-6 days after each treatment.  I always know I'm feeling better when Mexican or Thai food starts sounding yummy.   We also have Ensure on hand.  It seems that the day I get the treatment, eating really sets off the nausea, so I think I will stick to liquids on those evenings.

 

The chest port is getting more comfortable.  A friend I have met at Group Health who is also being treated for breast cancer told me she named hers Kerbie.  One day Brian told me it looked like a hamster under my chest, so I knew I had to name it Herman after the most precious little hamster I had when I was a young girl. 

I was getting out of the shower the day Brian made the hamster remark, and I thought, here I am - bald, one breast, a hamster in my chest, a rash from having an allergic reaction to the chemo, my eye still bloody from that vessel rupturing.  I asked him "Did you ever think your wife would be sooooo HOT!"  Of course, he loves me just as much now, if not more.  He's so good at taking care of me and showing his love.

 

We went in for the 4th infusion last Thursday this being the second dose of Gemcitabine for this cycle.  Our sweet friend Heather joined us.  Poor girl got car sick on the way to the appointment.  The infusion went well and getting chemo through the chest port is a breeze.  It didn't hurt at all when she accessed it, and I can't feel any pain in that vein at all.  I'm so glad that nurse recommended it. 

 

Brian was sick after that for the next few days, so I think between him and Heather, they took most of my nausea for me.  This treatment has certainly been easier on me than the previous one.

 

My surgery site continues to accumulate fluid.  After it was aspirated over a week ago, it kept slowly building up then going back down, but today I see more fluid.  I had thought maybe I had an infection causing the fluid accumulation, as it started looking a bit red, too.  I was already taking an antibiotic for the infection in the root canal, so I thought that would take care of it.  We will see.....

 

8 years ago when I was on Adriamycin, once my hair started falling out and we shaved it, nothing ever grew in again.  This time, there has been some regrowth in between cycles.  It looks funny as it's a sparse covering over the scalp.  It is starting to itch again, so the follicles that didnt' get whacked with the first dose of Taxol are now being affected.  I will probably need another shave to get rid of those irritating hairs.

 

We picked up our second group of pictures from the photographer we have been working with to document this process.  For those of you who don't know, we were recommended to the most wonderful woman for these pictures.  Our first session took place the day before my mastectomy and we went again right before I lost my hair.  We will continue to do sessions at each stage.  This woman, Lynnette Johnson, is well known for the photos she takes of terminally ill children.  Her foundation is called Soulumination, and you can read about her, read her blog, and look at her photos on http://www.soulumination.org.  She wants to do a project raising money for women's cancers through photography, so I feel we were meant to meet.  She is fabulous.

 

I had never actually been told what my prognosis was, and a friend had asked.  I decided to bring the subject up with my oncologist.  With my first cancer, they gave me about a 90% chance of being disease free at 10 years.  With this cancer, he estimates it to be in the low 80s.  I was disappointed at first as I guess I was hoping to hear in the 90% range, but then I realized that it is only a number.  We are doing everything up front to give me the best opportunity, and beyond that, there is really no reason to dwell on a number.

 

I have applied to take the paramedic test through my department.  If I were to be selected, I'd be in school from October-July this next year.  It will be really good for me.  Though it is a difficult and arduous program, I feel I need to set goals for myself and keep planning for my future.  Wish me luck!

Boy, after yesterday I am so grateful that I was feeling good and had fun last week.  I had a wonderful massage the day before the treatment and then dinner with some great friends.  The next morning it kind of felt like going back to jail after a furlough. 

 

Yesterday was a rough one.  We were there bright and early for the chest port placement.  They gave me an IV antibiotic though I am still on the other one for my tooth infection.  The procedure went fine, and I got some of that Versed ahead of time.  That's pretty weird stuff, though I don't feel like I had the amnesia with it this time.  They fed the catheter into my subclavian vein guided by ultrasound then placed the reservoir under the incision site.  Now I just have a bump under the collarbone.  To access it, it's a needle stick into the skin over the reservoir, and they deliver chemo and can draw blood out of it.  I have a nice bruise and am fairly sore at the site now.  It looks and feels like I got clobbered pretty good.

 

It was back up to the infusion room after that for the fun to begin.  I got all the pre-chemo drugs for nausea and the allergic reaction first, then the chemo next.  They start with Taxol which goes in over an hour then the Gemcitabine which takes 30 minutes. We ended up being there pretty much all day between the chemo and port placement.  With the delivery through the chest port, there was no pain in the veins with the infusion.

 

A couple of our "fire chick" friends joined us (Kris and Nicole).  It was really nice having them there and gave Brian and I both a diversion.  For some unexplained reason during the Taxol infusion, my stomach was cramping horribly.  Kris knows two pressure points in the feet - one for the uterus and one for the GI tract.  She rubbed the point for the uterus first and then moved to the other point.  It was amazing because that point in my foot was quite tender to touch and she could feel that it was knotted up.  After several minutes of her rubbing it, the pain disappeared completely.  Pretty amazing.  There was a reason she knew about that point. 

 

At one point during the day, we heard the nurses singing "Hit the Road Jack" to one of the patients who was there for the last chemo.  It made me cry.  I remember the irony of finishing treatment last time.  I felt happy I would no longer be receiving those toxic drugs in my system.  On the other hand, it's scary being finished.  You are no longer actively fighting the disease.  You all of the sudden feel like you are just playing a waiting game - hoping it will never come back but needing to go in for those regular check-ups.  It took several years before thoughts of cancer didn't frequently occupy my head .  I hope it isn't as difficult this time.

 

After the chemo, I had to go up to the surgeon's office for an aspiration!  Yep, that damn mastectomy site is filling with fluid again.  It has had only very small amounts over the last month which would go away quickly on its own.  Then I woke up the other day and it had ballooned up.  The nurse pulled off 20cc or so.  Maybe it was increasing the difficulty of my workouts that has done it, but you would think over two months after surgery, this would no longer be an issue. Oh well.  I can see today that there is more building up again, so I may need to go back next week for another aspiration.  It's so frustrating, but at least there isn't any pain.  Brian may get to use me for a level when building the deck after all.......

 

When we got home, Brian made me a nice dinner of my favorite comfort food - macaroni and cheese!  It's fairly bland and easy to get down with the nausea.  We watched a movie and I was doing OK until I got up to get ready for bed.  The nausea came over me in really strong waves, and I thought for sure I would get sick.  I hovered over the toilet for awhile invoking memories of the drinking days of my youth!  Though I sat there and slobbered, nothing came up.  Brian brought me some ginger ale and I laid down in bed.  I just had to lie still and after awhile it settled down enough that I was able to get to sleep, but was awake again by 4am.  I am still a bit queasy today, but nothing like it was last night.  It was a pretty miserable night. 

One more down, 5 more to go...........

Hello out there,

 

This last week has been good to me.  I started feeling better Wednesday afternoon (the hair cutting/shaving day).  The timing of this last week being an off week from chemo was perfect as I was feeling up to doing the Columbia Tower Climb.  I just emailed the articles and pictures that were published about it to all of you. It was a great experience for me, and very emotional at the top.  When I arrived at the event and met up with my teammates, they had the stair chair waiting in case I needed it.  I'm sure they were as relieved as I that I could make it up on my own.  I am going to do a write-up on it for our Fire Dept publication, so when it's published, I will send it to you.  A friend of mine from a nearby fire department did the climb with a sign on her helmet that said "Climbing for Camari," and several Kirkland firefighters that work with Brian made the climb with our group, too.  The fire department truly is one big family. 

 

The whole bald thing is going just fine.  I think the anticipation of it is worse than the event.  8 years ago, I was more self-conscious about showing my head, even around Brian, but this time I am more comfortable.  I do sleep in a hat just for warmth.  I have lots of cute hats, so it makes it kind of fun.  It does add to the time it takes me to get ready because I have to coordinate it. 

 

Brian, in solidarity with me, is sporting a slick head, too.  We went into a salon and had the

girl shave it close, then he bought a special head shaving razor to complete the job.  He looks quite handsome!  A guy he works with told him "It's not like your head is that hideous or anything."  Compliment?  We'll never know :-)  A couple other friends have shaved theirs, too, and a bunch of guys from work are having a shaving party at my station later in the month.  The email that went out about it was hilarious. 

 

After the girls cut my hair for donation and shaved it to stubble, my head was started getting quite itchy.  As it continues to fall out, it just irritates the scalp.  Brian shaved it as close as he could with his regular razor.  I know he never imagined he would end up shaving my head twice in a lifetime.  Once he bought the head razor, I used that.  I do have one word of advice - don't ever shave your head in the shower when you are not able to see what you're doing.  I ended up nicking the hell out of my poor scalp and came out of the shower with little bloody spots all over it. 

 

As you can imagine, it's not just the hair on your head that goes during chemo.  I mentioned in a previous update that my sister-in-law had asked why they don't sell "pubes" on the site where I bought my hats and stuff.  Not all of us are keen on that pre-pubescent look.  So, she came up with a great idea for a web-based business that we could call

"Canc-Hairs."  On it, we could sell sets of matching brows, lashes and pubes.  We could sell them pre-dyed, or sell dye kits to go with them for the do-it-yourselfers out there.  Now that I have put this out, I hope none of you beat us to it.  We just need a little time to get it going.  Any willing donors out there?????

 

We got to see Bon Jovi in concert the other night.  As many of you know, I've never quite left the 80s behind, so it was awesome.  They performed for over 2 hours.

 

This chemo is wreaking havoc on my mouth.  I have a couple sores that have been pretty painful, my throat has been sore for over a week now, and the other night I woke up with a bad toothache.  The next day I couldn't stand to chew in that area as the pressure on the tooth really hurt.  I had a root canal in the early 80s on it and have since had a crown.  The dentist x-rayed it and said it looks fine.  She thinks I probably have an infection going in due to my lowered immunity from the chemo.  So now I'm on an antibiotic that can cause nausea.  Just what I need right before starting chemo again.

 

Tomorrow we go in early and I get the chest port put in, then get both of my chemo drugs.  The infusion should go much better with the port.  I am not looking forward to it, but it will be one more down and get me closer to the end.

 

I signed up to do the Danskin Triathlon in August.  If you've never heard of it, it's an all women's event, and the first wave of participants are cancer survivors.  My dear friend, Brenda and I did it together shortly after her treatment for brain cancer five years ago.  We had always talked about doing it again, and this year it just became more important.  6 months I received my second breast cancer diagnosis, she was diagnosed with breast cancer.  She is now finished with her treatment and has been a trooper through it all.  So we will cross that finish line again both being two-time survivors of cancer. 

 

Ladies, continue to be vigilant.  Another friend (I work with her husband) who is 38 is going through this mess, too, and in spite of a difficult course, remains strong and vibrant.  She found her own cancer also.  I hear from so many of you that you have lots of lumps and don't know what you are looking for.  The key is to know what is normal for you and be aware of any changes.  Do your exams a week after your cycle if you still have cycles or at the same time each month if you don't.  And if you have any doubts about anything, get it checked out. 

 

Wish me luck tomorrow......

 

The hair was starting to come out fast, and since I wanted to donate it to Locks of Love, I didn't want to let it go too far before I cut it off.  Yesterday in the shower, I could feel small clumps of it sliding down my back and legs, and had to keep clearing the shower drain.  It was definitely time to get rid of it.  Also, if you let it go on too long, your scalp gets sore because the hairs are not attached and just sit on your head irritating the skin.  So, some of my "fire chick" girlfriends and another couple (I work with him and his wife was diagnosed with breast cancer shortly after me) came over to help.  We had some yummy treats and good wine ahead of time.  I thought I might get emotional, but we made it into a fun, goofy evening.  The girls did a great job getting the hair all bundled up.  They put it into several ponytails to bunch it together, cut the ponytails off close to the head, then bundled them all together.  They then shaved my head so now I have peach fuzz.  In honor of that, we did some shots of Peach Schnapps.  If I rub my head, I can still see the fuzz coming out on my hands, so pretty soon, I'm sure I'll be slick and shiny.

 

I had a pretty low week after that second dose.  I had hoped it wouldn't be as hard because I was just getting the one drug, but I had everything except the muscle and joint aches.  The nausea and malaise went on until yesterday, and my throat has really been hurting.  It woke me up last night it was so painful.  BUT, other than the throat, I feel much, much better today and don't have another dose until the 9th, so I plan on making the most of it.

 

We ended up going into Urgent Care the other night for my eye.  It looked like the shape of my iris was getting distorted, so my oncologist recommended I be seen.  The doc reassured us that everything looks OK, and the blood will clear up over time.  They checked my counts, and my white count was low, but the platelet level still looked OK.  I have some other minor unexplained bleeding, so we are not convinced that this is not chemo related.

 

We are still receiving such a tremendous outpouring of support - emails, calls, visits, hugs, meals, offers to go on walks, flowers, funny stuff, gifts...........  I am the luckiest woman I know to have the best, most supportive husband in the world as well as the greatest friends and family and to work with the best fire department there is.