Year End Cost/ Years Recap

Today is the last day of 2010. My journey of discovering that I have breast cancer is not over. Its been a long, tough, emotional , testing year for me and my loving family. And have learned to rely on Jehovah God more than ever before. I spent many evenings listening to the meetings at the Kingdom Hall since I could not be there in person.

Remember back on January 2nd when I went for my mammogram, thinking at the time that I had a cyst that was hurting quite a bit, thinking that maybe I should see about having it drained or removed. And right a way they called me back for a second mammogram to double check what they thought they saw. Now I am glad that they did, at the time, it seemed kind of annoying but scary too.
January 22nd was my appointment for the biopsy and the same day I learned I had breast cancer.
Had surgery to have the lump, and as it turned out had some lymph nodes removed also on February 19th.
On March 23rd, had my chest port put in since my veins were not large enough to use for chemo.
Then on April 1st I went to Longview Kaiser for my first treatment of chemotherapy drugs.
The chemo ended August 26th. and at this point I am still going to Kaiser every three weeks for the Herceptin and this is scheduled until June 16th, 2011. As far as I can tell from the Explanation of Benefits from Kaiser, this drug costs $3347.00 each time. From August when I started taking the Herceptin until December I have had 18 treatments that total $60,246.00. By the time I am done in June of 2011 I will have had a total of 27 treatments that will total $90,450.00

And then after the chemo I went through 33 treatments of radiation and this was Monday through Friday appointments. The amount charged for the radiation was higher than I ever would have imagined.

As for the cost of all this, I am soo glad that I have insurance and feel bad for those that do not. I have called Kaiser so many times, I should have them on speed dial!
Whether its to ask what I owe, to find out what they are charging me for or to discuss my bill, its usually a long phone call that is frustrating. I have also learned that my insurance coverage is pretty good and I cant complain about it.
When you have an appointment, treatment, procedure, etc they send you what they call an Explanation Of Benefits or EOB for short after your appointment. I have learned that  I have not received one for every single visit. Good thing my great friend Kris bought me a little note book that I have carried all over the place and relied on for everything. I wrote down every day that I had an appointment and what it was for.
In looking back at the calendar for this past year, I have had 56 appointments and 102 total appointments that have included phone appointments, lab work done on my lunch hour, days off work for surgery and healing, or days off work when I was sick from the chemo drugs etc.

The following will not make sense or add up due to the fact that I cant figure out some of Kaisers billing but the following is the total for what i have receipts and paper work for:

When I add up the EOB (Explanation of Benefits)  that I have received it totals $65,575.03
The amount I was charged total was $102,763.59
Just the cost of the 33 treatments of radiation totaled $66,098.00
Add in the cost of the wigs I bought $451.88 bringing total out of pocket paid $3659.95
Now that the year is over, I will be back to paying my $250 deductible, and $2000 out of pocket  $25 co pays ever time I go.

And I owe a huge thank you to my husband, my mom, Kris, LeAnn/Missy and Shari for all the help, support, driving to and from appointments, sitting with me while I was sick, allowing me to be sick and to heal etc.  for the last year and all the online comments on this blog and loving comments at meetings and cards and flowers. Along with those that I work with who had fund raisers for me that brought in more funds that I ever would have guessed.

Its been a long emotional year and in the next couple of weeks, I will be going for my yearly mammogram and hope and pray that it comes back without any cancerous growth showing on it.

MUGA Results

Today was my regular visit to Kaiser, my every three weeks visit for the Herceptin.
I was told that before they could hook me up to the IV and get things going, they needed Dr. Richert-Boe to sign off on the Muga heart test results.

They explained it that my first Muga was really high, above average, (I remember the substitute Dr. I had one time told me my heart was very strong)
Anyways, they said the average person starts with a count of 60 (not sure what this number is from or for or how its figured), well mine started at 69, then when i went for the next Muga scan it dropped to 66 and now this time, it was 62.
Since it was down 10% from the first time, the Dr had to OK today's Herceptin. The nurse, Angie told me that when she showed the results to Dr. Richert-Boe, she was like, "ya, so , give her the meds, she is still above average".
so that took a little extra time but  I am glad to know the Herceptin isn't weakening my heart too much.
After today I have 8 more treatments, June 16th is the scheduled end. And I will be seeing Dr. Richert-Boe every other month until June... and the Muga scans are every three months, so I most likely will only have two of them left. Cant believe I am already counting these appointments down!

I will be figuring and posting my years totals for what I have paid and what I have been billed now that the year is over and I have to start all over again with co-pays and out of pocket payments.

Muga Scan

Yesterday December 14th I had another MUGA scan  to check the strength of my heart. Like I have said before, the Herceptin medicine that I am now getting every three weeks at Kaiser using my port and an IV is very heard on the heart. This scan tests the heart muscle and they can see if the heart is holding up.
I should have the results in a few days. This test is done every three months, so I should only have 2 more to do until June.
Again, after laying on the foot wide bed and being completely still while the bed moved into a large circle of a machine, these two large plates come down to where they are almost touching my face. I lay with my left arm over my head and have the wires for an EKG connected to my chest and one on my left side of my body just under my breast. After about 25 minutes, they say I am done, disconnect me and I head strait to the 2nd floor at St. Johns to the Starbucks for my coffee.
My appointments have been at 2pm the last couple of times, and there is no food or drink 4 hours before.. so pretty much its no lunch for day. Not that hurts me by any means, but a good peppermint white mocha from Bucks is always a great treat!

Next Mammogram

I called and made my next appointment for my 2011 mammogram. It will have been one year since this whole thing started. I am nervous they will find something , like they did before and I will have to go through it all again. In reality, the chances of them finding something are pretty great but if they do, from what I have read it usually isn't active, live cancer and might only be scar tissue in the area. Still, it scares me just a little. Just remembering how I felt when they told me they needed a second mammogram and then got me in to for a biopsy soon after.. its all so new and fresh in my mind, as I am still getting treatment for it and healing from the radiation. I guess the need is  still there to tell myself that its going to be OK and that all I have went through, since I had it removed , was all preventative, and so is this mammogram appointment.

Baby Steps to Giant Leaps

Three months , 90  short days ago yesterday,  August 26th was my last treatment of chemo. When I first wore a wig outside the house trying to get used to it, even before my hair started to fall out I felt that first day that even driving through town on our way the Kingdom Hall that rainy Sunday morning, that even the other drivers were looking at me , knowing I had a wig on and  that I looked very different.  Some might say  a little paranoid... yes, but more afraid than anything else. If you have been reading my blog since the beginning, you know the wig fears I have had and the problems, like the time it came off when I was getting a message. Or the times at work I would look in my little mirror at my desk  and realize it was sliding to far back, and I had large forehead from it. Other than when Binnie shaved my hair off;  my mom and Richard are the only two who ever saw me without a wig or hat on the entire time.

Up to this day, I have ALWAYS wore a wig outside the house, no matter how I felt or thought I looked. I always felt that I wanted to blend in with everyone and didn't want to look like I have been battling cancer. Some have even said recently that they wished I would start going without my wigs. Easy for them to say!

Today however...... I am happy to say that I have left the house without my wig and went shopping! A giant leap forward in this cancer battle.


Most places I went today, I could tell people were looking at me, but I must have been having a really good day, since I didn't really care. They have no idea what  I have been through and how  scary this was but at the same time what a huge step  this was for me.
Most of the time, the men I saw had hair longer than mine! ( I was jealous of most of them!) Yes, my ears were really cold!
So here it is:

LAST RADIATION!!!!!!!!!!!!!!!!!!!!!!!!

Today at 5:45pm was my last radiation! YIPEEEEEE.
Having a celebratory martini as I type!

All I have left now is the Herceptin drug every three weeks at Kaiser until June. This I can handle since it doesn't make me sick and I usually go back to work when done. I will be checked every three months with a heart scan to make sure the heart muscle is holding up, since this is the side effect of the drug. And the heart will repair itself once the drug is discontinued should this happen.

This morning Kris texted me and said she was wearing pink today and wearing her wig (Bridgette) since it was my last treatment and did I want to wear pink too. I said yes.
When I got work, I found my desk decorated with pink crepe paper, pink ribbons, pink balloons and a pink boa. As every one came in, all my co-workers were wearing pink too and they all brought food for a food day. There was all kinds of food and even a cake that was pink and white and said congratulations with a pink ribbon on it. I got a basket of flowers/plant and a wine glass that has pink ribbons all over it. My co- workers are amazing, caring, generous, very supportive friends who have been so nice through out this entire process and I say THANK YOU for all they have done!

I have a check up in six weeks with Dr. Kim to check my radiation. I had no sadness in leaving the radiation office today. In fact I wanted to run out of there but I didn't. I did walk right out and say to the receptionist on my way out.. "see in 6 weeks. I didn't stop, I didn't linger.. just wanted out of there! I am sore now and I know in the next few days it will get to be more sore but then it should start to go away.

As Beth put it in an email earlier today:  Woo Hoo!!  Last time hearing the beeps!

Taking It's Toll

With only three treatments, or 15 minutes (5 minutes each time) left, I can really tell that the treatment now is very intense.
When the radiation started, Dr. Kim said that the "fold" under my arm -- or the area where they took out the lymph nodes and seamed the skin together would be the worst. And he is right. My arm in that area is very  sore and red. I can hardly lift my arm strait up over my head. The spot on my neck by my collar bone is doing better since I have been putting bag balm on it a couple times a day and they are not treating that area any more.
I am very ready for this to be over.
what the radiation machine looks like:
The machine at the left and overhead of the person laying down moves around the person, it can go all the way around the person if needed. For me, I have both arms stretched above my head.

radiation end date

November 17th is the end date for radiation!!!

COUNTDOWN: NUMBER 4

Today is going to be treatment number four.!
Yesterday I said I was going to count how many times the machine beeped... well, it was super tough and will have to try again today.
On all my other treatments, up to yesterday, the machine randomly beeped and moved. It moved into 10 different positions around me. Now it moves into 4 positions and the beeps sometimes are long followed by a bunch of really fast smaller beeps ( to clarify if I haven't already, the machine beeps when its administering the radiation). So now that it beeps for a long time in one spot means I am getting a really big dose in that spot. I tried to count,  I think it beebs 70 or 72 times.
Yesterdays treatment was  a lot shorter than before which was nice.
There is lady, I will call her really "talky" that comes in right after me everyday and she has just started her radiation and she is bald as can be and she said she loves it, than turns to me (there was another lady in the waiting room too) and says, " is that a wig? its beautiful. As you can tell, I like not having hair"..
well, what do you say to that? so I just said, "yes, it is a wig, I'm not as brave". and about then I was called to the back, thank goodness. Its not that I don't like talking to people I don't know, but I find some of this treatment kind of personal. I don't care what my friends ask of course and trust me, I have been asked some pretty off the wall questions!

COUNTDOWN: NUMBER 5

Today is the countdown for radiation. Today is number 5... so few left!
When the radiation started, I told myself, "only 33, that's one month", now I know how long it really is!
Today's session, from what I am told, will be directed on the surgery sites and not the overall breast, neck and arm (those area's because there are lymph nodes there). And I am told my time on the table with the machine will be shorter too.
So when I go tonight after work, I will have to re count the irritating sounding beeps!.
I will keep ya'll posted on it, since I know your are just waiting to know !

Arms

Yes my arms always go above my head and each hand holds on to a peg in the table.
the way I lay for the planning session is how I lay for the radiation treatment. That way I am lined up the same way  every single time so the nice colored felt pen markings always line up the same.
There are always two technicians in the room lining me up. They use funny words to each other to make sure I am lined up on both sides and the middle. They will say " Soup", "Ant","Post", "Edge" or sometimes they say "Soup edge"  or "Post Edge". Then once I am lined up with the red lines beaming out of the walls on both sides of me and the machine overhead, they say, "You're all lined up, here we go with treatment" and they leave the room and close the door. (I only know  the door is closed since I can see the reflection in the machine overhead of me, since I can't turn my head to look)

Radiation Planning Session 3

Today my appointment was earlier in the day and was scheduled for at least 45 minutes.
Like the first time I went to radiation, today I laid on the table with the lights out and they marked new places only this time with  green Sharpie pen (last time it was purple) and I got new stickers but mostly they just drew on my skin today. This is in preparation for the last 5 treatments when they zone in on the surgery site. Up until now its been a broad area that they have been treating.
So after the new markings, Dr. Kim comes in and looks and OKs it. I layed there so long I thought my arms were going to fall asleep.(they are stretched above my head holding on to two pegs/handles and its not comfy at all.) Once this was done, I went into the treatment room for my actual radiation treatment. I arrived at 4pm and left at 5:20pm
Today was Thursday, Dr Day; when I met with Dr. Kim I asked him why the treatment is bothering (red, itchy and dry) so far up on my chest. He said that there are lymph nodes up there too so they need to treat them also. I never thought of that. He suggested using a lot of the lotion that is radiation approved that they gave me a while back.
He asked me if I knew how many treatments I had left. I said , " I think its 8" and he said, " I think its 7" so my rely was, " you are the doctor, I'll go with your count".

Estimated Radiation Date

The estimated last day for radiation treatment should be at 6pm on November 18, 2010
Would be sooner, only I am taking a couple days off to go the beach for a long weekend. I will really need it by then! This every day stuff is driving me crazy!

a thought

I found this saying in some cancer information I was reading and really liked it.

"Some days there wont be a song in your heart. Sing anyway"

Update

Today's posting is an update of a few things.
Hair regrowth: still too short to go without my wigs. It doesn't look like I will be making my goal of not wearing one the first weekend of November.
Eyebrows/eyelashes: they are growing back very nicely. Today I went to have my eyebrows waxed (not too thrilled with the shaping job, but it will do. As for the eyelashes, today is about the 3rd day that I have been able to put mascara on.. yippee! I love my mascara! Liked the false lashes, but just felt they never looked right, never sat at the right angle etc so didn't wear them too often.
Kaisers apt today: I had read in my cancer books that the Herceptin med I am getting every three weeks (until June 2011) has to be  mixed. Today the nurse told me that they are not suppose to order, or let the pharmacy know they need  an order of medicine until the patient is there, that they are doing OK, like blood pressure is OK, they are feeling OK and the access, whether it be by a port, an iv etc is connected and ready. But today all the chairs, i think there is 10, were full and the nurses were really busy. So my nurse, Angie told me she was going to fib and tell the pharmacy that I was accessed and ready so they could get going on my meds early. However, for the Herceptin, mixing it means that it starts in a powered form and they mix it with the chemicals, what ever they may be, and it has to set to dissolve and cant be shook to mix it so it takes a while longer than other meds to get from the pharmacy. Nice of her to realize this, since my appt was at 1:30pm and I sat there for a full hour or more before my Herceptin came along. If I have to go back to work, I am usually back by 4pm.. today I didn't leave Kaiser until 4:30pm. Long day! good thing it was my day of and I didn't have to go back to work.
Radiation Dr.  Since today is Thursday, its my Dr. day. I met with Dr. Kim for about 3 minutes today. he asked how everything was going, I said" fine", he asked if my skin was reacting OK, I said "yes", he said  "can I look at it?" I flashed open my burn-your-eye-out-red robe he briefly looked and said,
"you're right, it looks OK, see ya next week" I said, "sounds good". To think I will end up paying him a copay of $25.00 for that! I need to quit the credit union and become a Dr!
I am a little bit red still and it feels like the area is extra sensitive and becomes red and itchy really easy but  using the lotion from them seems to help.
Today was visit 21 I only have 12 left!!

Radiation 1/2 way!!

Out of 33 treatments of daily Monday through Friday radiation at St. Johns Medical.... I am half way done!!!

Since today is Thursday, its "Dr. Day" so I met briefly with Dr. Kim. Told him I was a little red and itchy and that the technicians had given me some wonderful lotion! He said to use the lotion when I need to but preferably right after treatment, before going to bed and in the morning. Our meeting was brief and I was done and out of there by 6:10pm and home by 6:15pm

Radiation Itch

So I started to develop an area that was really really  itchy pretty high up, just under my collar bone. It always itched, so  I put some lotion on it. It itched some more so I found a tube of Neosporin and put that on it. Nothing worked.
So today at my radiation appointment, when I was done, I asked the technician if she thought it had anything to do with the radiation. She said yes and gave me a tube of lotion called Miaderm.
It says it was developed by radiation oncologists for patients receiving radiation therapy as part of their cancer treatment.

The Dr.  from day one told me not to use any lotion or deodorant etc in the area I will be getting the radiation. But this lotion I can use three to four times a day but not 2 hours before my treatment.

I hope it works.!
Today was treatment number 14 out of 33. This itch so far is my only side effect.

Going good

So far the daily radiation has not made me tired, or burned me. I have done 8 of 33 treatments.
Even when I have to work until 5:30pm I can easily make my appointment at 6pm. They ask that I be there about about 5:45pm to get changed in to my robe and be ready. I have not had to take any time off work for these appointments.

As for my hair, its coming and little by little and I can now see where my hairline is and its getting darker. When I run my hand down the back of my head, I can feel its "going with the grain" and is smooth, when I run my hand from my neck to the top of my head, I can feel its "going against the grain".
I have been taking prenatal vitamins to help it grow.. will try just about anything to help it grow! Not too sure I will make my goal of : Not to wear a wig by the November 6th and 7th assembly weekend, but I think it might be close....

The Muga scan results came back and my heart is taking a very small toll on the Herceptin med. The nurse at Kaiser said to be aware of IF I feel out of breath or tired. Its not bad, just a little change in the test results since the last time. But when I did the Muga scan, I was on Herceptin every week. I am now on it every three weeks so that should make a difference too.

I am feeling really good.

240

This is the amount of times that the radiation machine beeps while I am there. I am under the machine between 10 and 15 minutes.
Its a pretty annoying beeping sound, not a nice low, calm beep but a buzzer beep... if that makes any sense at all!!!

Radiation # 3

Today, I decided to ask a couple questions about the machine.
As it rotates around me, it makes sounds. One sound is like a shuffling , card shuffling sound. The other sound it is that it beeps.
So I got to thinking that maybe when it beeps, that's when it administering the radiation. So after it was all over, I asked the technician, if the beeping sounds were when it was giving me the radiation. She said she didn't know what beeping sounds I was hearing since she has not had radiation and can't be in the room when its going, but yes she thought it was. But then I got thinking later, that she told me she can see me and hear me the entire time I am in there during treatment... but she cant hear the beeping sound?... I think over time she had tuned it out. I would, its an irritating sound! Kind of like an old door bell that buzzes.
On Monday I am going to count the times the machine beeps!

So far no effects of radiation! no burns or unusual tiredness! Glad its Friday. This every day stuff is already getting old! Now I have 2 days off!

Robes

Great question Beth, not all the robes are that lovely "burn-your-eye-out" red color. Fortunately, just mine is that color, as I really don't care for that color! No the robe is not mine to keep when done.

There was a high school kid in Kalama who wanted to do a fund raiser, so asked the radiation dept at St Johns if he could donate what he raised for new robes for the patients. He collected enough money to buy just over 100 robes. They are very nice, very soft and plush. So thank you to him and his efforts who ever he is.
Yes I go every day Monday through Friday for a total of 33 times. I asked for the last appointment of the day which happens to be 6pm and  I have to be there by 5:45pm to get checked in and changed. Sometimes I am off work at 5:30 so its a race to get there on time. But with having that late of an appointment, I get to park any where I want as the lot is empty. So I just pull up to the front door, park and go in. That parts kind of nice!

Every Thursday is what they call Dr. Day. Its when you are done with treatment that day, Dr. Choong Kim  (who is a male if you couldn't tell by the name) meets with you to make sure you are doing OK and to answer any questions. Since this was my second time, I didn't have any questions so our meeting was about 2 minutes long!
With my Kaiser insurance, I am only suppose to have to pay for the Dr. Days not every treatment. The hospital bills Kaiser, and they in turn bill me. I am pretty sure when I get the bill, it will be wrong but will deal with that when it happens.

Radiation Planning #2 and Radiation treatment #1 only 32 left

Yesterday Sept 28th was my second planning session with the radiation dept. They did the exact same thing as the last time, only this time they were checking that the marks they made on me lined up again.
I still don't see the need for the very small tattoos since they ended up covering them with a purple felt pen and a piece of clear round tape over each spot. I have one on the left side almost behind my arm pit, one almost on my left nipple, two in the center between my breasts, one on my right breast on the side and another on on the  right side behind my arm like the left side.
They told me not to pick these off and to be very careful in the shower. If these marks get un-done, than I have to do the planning session again so they can re mark me. When they see that the clear band aid/tape stuff starts to come off they will replace it.

Today Sept 29th at 6pm was my first actual treatment. They provided me with a "burn-your-eye-out" red robe, had me undress from the waist up, lay on the table and a machine  that looked identical to the one in the planning sessions slowly moved above me from the right side to the left. It took about 15 minutes total.
I headed back to the dressing room, put my robe in a bag with my name on it and hung it on a rack. I will be the only one to use this robe.
Nothing touched me, nothing hurt, it was fine-- for the first time. I know worst is on the way!

When I got home I said to Richard, " Am I glowing yet? I've been radiated for the first time". His comment to me was, " only 32 left to do!"
I figure I will be done the middle of November. So my way of rationalizing is this: Since Sept is over in 2 days, might as well say is October now. So that means I will be done with radiation next month.
Crazy but it might help me cope with the daily routine of going for treatment!

PS. As for my hair.... imagine a Brillo pad. Richard said he can see a little bit of dark in it. I cant even see the outline of where my hair is suppose to be its so light colored.

Komen Race for the Cure

I have an AMAZING friend who is several years younger than I am and have known all her life --I used to babysit her-- and somehow over the years we have always kept in touch.  She now lives in the Bay area and is married with three adorable children.
Over the past couple years, she and her husband Brian have made some very noticeable changes in their lifestyle. They now love to run & particiape in races. This past weekend, they were in the Race For The Cure in their area- where the weather has been close to or over 100 degrees.

I have a wonderful support team with my friends in California. THANK YOU!! I can not begin to say how much you all mean to me! I wish I could have seen both the run and the great posters in person. I know a lot of work went in to the posters, the outfits, the pink nail polish that makes the girls run faster.
And next year, I plan to be feeling much better and be able to attend the Komen activities for myself.

The following is what she posted on her blog, here are some of the signs they made:
.

...to capture the true feeling of the morning in pictures or words would be impossible.

I spent some time on Saturday talking with the girls about cancer.
As far as knowing how many women's lives will be touched by breast cancer (and men's for that matter), what the treatments are like, why they would be seeing some ladies without hair, what the signs on peoples backs were all about, that breast cancer has a 98% survival rate....those sorts of things we hadn't talked about before. They had a lot of questions about my friend Nancy while making signs for her. How did I know her, where does she live, why is her hair different in every picture, how does she decide which wig to wear everyday.....typical 8 and 6 year old questions.
We talked about these things so that they would understand more about what the event was about, and so that they wouldn't be shocked to see all different types of women, all at different stages in their journey's with cancer. I wanted them to know that every name on someones back was a person, a person who has dealt with cancer, and that all the people running and walking had been touched by those peoples journeys, strength and courage.

One of the moment of the morning that I think effected me the most was the parade of survivors. They started with bringing on stage the women who had been diagnosed under the age of 40, then those who had been in remission for under 1 year, then 5 years, 10, 20, and 30 years. Some had survived breast cancer more than once. Some were much younger then me. Then they played Melissa Ethridge's I Run For Life. This song and I have a history as I had heard it for the first time the day after Komen For the Cure last year. I cannot hear this song without crying, so you can imagine what happened in this setting, looking up at all these amazing women, who were also crying.

Then there was a speaker on stage who was speaking about how it could be any of us, at any point in our life, when we least expect it. This again, got the water works going. While the kids knew we were there as a way of showing support for my friend, they did not know that earlier this month I had my own scare. It was a normal day, we had done our long run, came home, I was about to get in the shower and that is when I found it.Not that it was hiding, it is actually quite large and visible from the outside. Brian came in the room to tell me about something on TV and although I was looking at him, I didn't respond to what he had said, and he knew something was wrong. We have wonderful Dr's here, and I was in the office by 2 the next day, and having a mammogram and ultrasound w/in 5 days of finding it. In what may have been the longest 5 days in history, you have a lot of time to think about things, what could possibly be lying ahead of you, how you will chose to handle it. I have the utmost respect for anyone who has heard anything other than "your scans are clear, I see nothing that looks cancerous or suspicious" after finding a lump and having it looked at.This run will always have a special place in my heart. As I said, there were many moments that stand out.

 




Beth and the kids with their signs of support on their backs:

How do I begin to say thank you? You all mean so much to me!

Muga Scan Results

I was suppose to have my muga heart scan on Sept 15th and meet with Dr. Richert-Boe on Sept 16th. However, that appt on the 15th got moved to the 17th. The day after my Dr appointment. So as of yet, I don't not know the results of it.
The last time, the Dr. said the results were really good and my heart was very strong. I have an appointment to see my regular physician, not the Oncologist on Tuesday so maybe I will find out something then.
I am not too worried about, if it was bad, they would have called me.

Feelings

Time to share my emotions again.
I am struggling with my feelings lately. I know of a few people who I have known my entire life and they too are struggling with some type of cancer. However, they are not winning the battle so much and have been involved with hospice and been in the hospital.
This brings me to the fact that I am feeling guilty. Guilty about my cancer doing OK and me feeling really well after all the chemo treatments.
I know that my cancer can return at any time and that's a scary thought too.
Even though my first thoughts back in January about learning I had cancer were just that, "I have cancer". Then as time went by it turned into " I am a cancer survivor, I can do this".  I have a silicone pink ribbon ring (like the silicone bracelets) that I wear from time to time and every time I wear it , it reminds me that I am survivor. But I still feel bad, sad and guilty, even though I should feel fortunate for my health. I cant say that its Jehovah helping me through this as my friends who also have cancer have Jehovah as their God also and he would never pick and chose one over the other. I do thank Jehovah regularly for my health, that I have been able to endure and ask for his help to endure.
Guilt is a tough emotion.

In one of the emails I sent to Missy I told her my feelings and this is what she wrote back:
You don't depress me when you tell me how you are feeling.  I can't imagine the guilt and fear that you feel in your situation!  I would LOVE to tell you that you shouldn't feel guilty for being a survivor....but, like they said at the convention...your feelings are real.  I WISH you didn't feel that way, and I hope you can work it out eventually.  I'd be scared too.

Email from Dr.

Today I got an email from my primary care physician at Kaiser, Dr. Manzone.
As I said in another posting, I have never met this Dr. my Dr. retired and I had to pick a new one so chose this guy. I am told he is really nice.
Here is the email he sent me:

Dear Mrs. Smith:
I have received the latest report from Dr. Richert-Boe, she has things well in hand. I shall continue my primary care duty of watchful waiting- please let me know if I can be of any service.

Chris Manzone


Today I also had another Muga scan at St. Johns. This scan is for my heart  to make sure the heart muscles are not not weakening from the Herceptin that I have been getting weekly. This scan is done every three months.

Dr. appt

Today was the last of my weekly treatment with Herceptin. I now will be going every three weeks .... until June 2011 for the Herceptin.

After my first planning session for radiation, that night the side of my  breast where I had surgery  hurt and would shoot pain. It seemed to go away later in the day only to return the next night. So today since I was meeting with Dr. Richert-Boe I asked her about it. She did a physical exam of my breast and said it seemed to be OK and that it was most likely from the stretching they had me do at my radiation planning session.

I can reach with that arm and put it over my head, etc. but to put it over my head while laying down in a reaching position, I might have over stretched a muscle a little. But to be aware of it. She was not concerned.

I also asked her if I could start taking prenatal vitamins to help my hair grow and she got a little smirk of a smile and said yes.
What I have is very very fine and mostly very light colored.

My goal is to not to have to wear a wig by the first weekend in November when we have our two day circuit assembly in Puyallup. Now how realistic that is, I am not sure but that's what I really want!!

Radiation Planning Session #1

Today Richard took me to radiation for my 1st planning session.

I laid on a hard foot wide table/bed with nothing on the top half of my body while 2 nurses lined up a machine that had laser beams that they used to mark me by. There was one on each side of me and they each had a purple sharpie pen and were making marks. Then they called in  Dr. Kim and he put some tape stuff all the away around my breast and he did some marking on me too.
Then one nurse took a needle and gave me a very small tattoo the size of a freckle ( i asked for rose or something fun but she said she wasn't any good at that kind of tattoo!) I was marked on the on left side of the breast kind of under my arm, the center between my breast and the same spot on the other side of the breast/ arm area.

Then they gave me hospital gown and took me and my purse on my lap,in a wheel chair with the feet peddles half way up (not real comfy!) to another floor of the hospital for a cat scan. That's when we found out that there was an emergency that came in and they needed the machine and we had to wait. So the nurses left me, in my wheel chair at the side of the hallway to wait our turn.. awkward! but then they decided we could use the machine if we hurried. So we did.
When we were done, got back to radiation dept and I put my top back on and got my next apt date for Sept 27th for my second planning session.

Party Time

My sneaky mom organized a surprise party at our house!!!

She asked me to reserve her about 2 hours on Sunday after the meeting on Sept 12th and said that lunch would also be provided. I sort of reluctantly said OK.. not  sure what she had planned.
Now, I couldn't see my mom driving us too far to do something and it also included lunch. I decided to let her have the couple hours and go with the flow. Richard on the other hand was alot more than just a  little more reserved about it all , only committing 90% and it is for his mother-in -law of all people!

As it turns out, she mailed out invitations to come to our house for a party for me for finishing chemo on August 26th.

When we came around the corner on our way home from meeting as we pulled on to our street,  I saw her car and the Rob and Gayle Barnes' car and knew something was up and it was at our house, and  that it wasn't just mom alone. The first comment I made to Richard was, "our house isn't clean! its a mess!!"

Turns out mom got here in plenty of time, to clean off the dining room table (bills, receipts, the Sunday paper etc), make the bed, put the bathrooms in order, went in the garage and found all our patio chairs and put them outside opened the windows and doors  and than waited for people to show up.

We were not home very long and more and more friends came in the front door, the back door, I couldn't keep up with who was there! Everyone she mailed invites to keep it a secret and under cover! I had no idea.

There was fried chicken,  large bowls of yummy potato salad,  huge bowls of fruit salad, trays of sandwiches, meat and cheese trays, dip, home made peanut butter cookies and home made oatmeal raisin cookies and a cake that was white and pink and said Congratulations Nancy on it with two little pics that were of a pink ribbons.

Our friends and family:
Jerry, Brenda, Tyler, Taleah, Dom (Taleahs study & friend)
Tom, Kris, Stephanie
Jan, Marvin
Chardon, Binnie, Conlan
Mike, Lisa Gerhke
Paul, Shari Birch
Elwyn, Donna Hamilton , Mable Svein
Curtis, Lisa, Risa, Rachel Cooper, Pat Cooper
Linda Erlinbush
Rob, Gayle Barnes
Linda Bowen
Tawnya Tomilla
Jessica VonRock
Jan McCollister
Joyce Agliam

Mike said prayer before we ate and it made me want to cry. Everyone visited, had lunch and mingled. There was nice time had by all!
I was surprised and also surprised that no one leaked the info!

When it was all over, and everyone was gone mom said " I cant believe I pulled it off! It went well!!"
Thanks mom. I love you! What a great surprise.

As I have posted in recently, I am not done completely. I still have to go through radiation and go to Kaiser until my projected end date of June 16, 2011. But I am convinced that even if radiation is bad, it can not be worse than the chemo! The worst part, in my mind, is over with!

Radiation Appointment

Today I met with Dr. Choong Kim the radiation Dr. at St. Johns Medical Center. I have met with him one other time back on March 9th.
This appointment was almost an exact repeat of the last one.
He checked my scars, told me I would be scheduled for 33 treatments and that they would be Monday through Friday.
Can't wear any lotion or deodorant on that side while I am having radiation. The actual radiation appointment is suppose to take 10 to 15 minutes and that waiting my turn in the office will be longer than the actual treatment.
Also asked if I would be working during treatment. I said, "yes , I am going to try to ". He thought that was good. Said that most people who live an active life of working, and running errands, exercising ext. held up better under treatment.
Radiation will have four side effects: 1) Tiredness 2) sunburn/blisters/aches in the area 3)emotional roller coaster 4) possibility of developing Lymphodema. 5 to 10% of patients will develop this.

He did tell me that I most likely will have the a difficult time in the area under my arm where the surgery was to remove the lymph nodes. This part of the surgery they didn't use stitches when they were done, it looked like they glued the pieces of skin back together. He also said that I am just a little bit still swollen from the surgery.
Nothing to much new since the last time I saw him.
My next appointment in radiation is Sept 13th to set up what they call a planning session. To discuss my treatment, payments, make the molds they will use and to mark me with three little tattoos so they can line up the machines exactly where they need to be.

Round 8 side effects

Side effects this time have been a little different. But then, I cant say that it has been the same in the past.
This time,I felt pretty good on Friday and did quite a bit of sleeping  on Saturday, along with some crying. At one point, I went back to bed and Richard came in the room and I was crying. He asked what was wrong and I was bawling, " I am just so tired of being sick".
By Sunday night the leg cramps had started and Sunday and Monday night I spent the entire night, not sleeping, but thrashing around constantly moving my legs as they hurt so bad and had sharp pains. Today on Tuesday, I went to work at noon since I hadn't slept last night and I can feel my legs are getting better. Just a little queasy on the stomach.
I can do this, this is the last time I should have to feel like this! The light at the end of the tunnel might be visible now. I don't know if I could handle knowing doing one more chemo appointment so am glad its over.
On Monday I talked to the radiation dept at St. Johns to confirm my apt on Tuesday Sept 7th. That appointment they said would be with the Dr. so still not sure what day radiation will start but I am scheduled for 33 visits.
I think if I can do the nasty chemo, I can do the radiation.
And I am checking my hair daily for growth! I am so excited to think I will have hair again!

Beth's posting on her blog

Beth,
I cant begin to say how much this blog posting means to me!
Thank you!
Nancy


Thursday, August 26, 2010

Celebrating Nancy's Journey

I was half way through my workout today and I realized what date it was. August 26, 2010. Most of us wont remember today. We wont remember anything special, nothing exciting. Business as usual, just another day.

Not if you are my friend Nancy. Today is her last Chemo treatment. As I said in the beginning of this process, she is an amazingly strong lady. I know she does not feel that way at moments, but she is. She has been so brave. She has shared with her friends and family those moments we may have wondered about. What if one day I have cancer? What does it feel like? What happens? What are the treatments like? Are there glue on eyebrows? How do you go about buying wigs? What is it like to have a port put in? How do the drugs feel as they go in the IV? She has shared her emotions during those amazing moments when friends and family rallied for her. How she felt when her co-workers had numerous cookie sales at work to raise money for her medical expenses. How much it has meant to have her mom by her side at her treatments, and at home. How much her husband has meant to her during this process. How much her congregation has meant to her.

She has posted a glimpse into her next year, what appointments will be looking like, when radiation will begin. She knows she has a ways to go before this is all over with, and will be starting her radiation in September. The projected end date to it all being June 16, 2011.

But with the end of each treatment, the light at the end of the tunnel gets brighter, the end is in sight! It's about 9:30 now, her last treatment will either begin shortly or already has. Today is the last time she'll have to pick out her chair, where she'll be for a few hours, keeping her self busy, no doubt with her mom by her side. And as she said, however bad the side effects, however bad she feels, its the last time she has to do it!

Brian and I ran the Komen for the Cure last year. At the time, it meant a lot to him, as his mom was going through treatment for Breast Cancer. I felt a bit out of place, in a sea of pink. There were women all around us, some were survivors, some were clearly undergoing treatment, some were running in honor of sisters, mothers, friends, and family members who fought with all their heart but lost their battles. It was emotional, but not personal.

This year, my daughters and I will run for Nancy. I don't' think she could ever know how much she has meant to me over the years, especially in my childhood. Her home was a safe place for my sister and I to be. She had no way of knowing what all was going on in my little world, there was a lot she didn't' know and still may not. Her home was the highlight of my life. In those early years, pre elementary school age, I thought she lived in a castle. She had a huge old house, with a huge closet full of shoes for my sister and I to wear around her room. She listened to "real music", not country. One of her fav at the time was George Michael, and her house was the only place we got to listen to him. She would help my sis and I slide down the stairs on whatever slippery objects we could find, while her mom was in the kitchen cooking liver. She taught us how to use the sewing machine and I can't tell you how many needles we broke! We played countless games of Clue, which was the neatest thing at the time. She had cats, which we thought were neat, although the cat litter was in the bathroom under the sink...not so neat. For a while, her grandma lived with them, and I remember thinking she was this neat, older creature. And the patio full of bird seed and birds, the neat old shed full of her dads projects. Her dad wasn't' around a lot that I remember, but I do remember being fascinated by him. He was a gruff teddy bear type, very raspy voice, smelled smokey, had dark mechanic hands, but had a gentleness, and a twinkle in his eyes, and a huge personality. My sis and I would often pretend to be sick so Nancy could come over and watch us. She knew, but never told our secret! She would bring over some project, sometimes laying out quilt squares all over our living room floor. After a day of playing and hanging out with the coolest teenager we knew, I remember about 3:30 she would remind us that we were supposed to be sick....we would settle down and put on our sick faces just in time for mom to get home at 4. She will never really know what an important role in my childhood she played. And she's always been there through out my life. She has always kept in touch, some how remembering anniversaries and sending home made cards, emailing...despite the fact that we haven't' actually seen each other in many years.

I have hated that she has had to go through having cancer, and all the things associated with that. I hate more the feeling that there is nothing I can really do. But I will do the one thing I can do. I consider it an honor and a privileged to run for Nancy. The girls and I will be wearing our pink, and running our hearts out!

Love you, sis!

Round 8 LAST OF THE CHEMO DRUGS!!!!!!!!!!!!!!!!!

Today August 26, 2010 I had round 8 of my chemo drugs.. my LAST chemo treatment!!! Yippee!!!!

Today when I met with Dr. Richert-Boe, she asked me all the usual questions like, sores in your mouth (no), diarrhea(no), constipation(no) numbness or tingling in your fingertips and toes (sort of ,, only my on my heals), eating OK (yes, too much!). Then she proceeded to say that I have made it, I did it, this is over with.

Dr. Richert-Boe is a retired Dr that came back to work for 2 days a week in oncology. She has even spent some time in the research dept studying cancer. She is quiet lady, has long gray hair that is not pulled back. At first she kind of scared me but as time went on, she has gotten nicer and nicer. Today she even got online on the computer in the exam room and showed Richard I pictures of her horses, (she plays polo in Tacoma on the weekends).

The plan for check ups is the following: I will still go to Kaiser for the Herceptin (non chemo drug that I have been going weekly for.) for the next three Thursday's, then I will go for it every three weeks for the next 9 months (projected end date is June 16, 2011)
Will meet with Dr. Richert-Boe every three weeks for 6 months, then every three months for 2 years, then once  every 6 months for a year, then once a year for 5 years.
When I asked how and when they will test me again for cancer to see if its coming back, she said I will still get my yearly mammograms, but its mostly in the Dr's visits that its discovered. By the questions they ask and any symptoms I would tell them I am feeling.

So is still a long road ahead of me.. but winding down!

Now that I have had my last treatment, now I wait for the side effects of the leg pain to show up in the next couple of days.

I did it, I cant believe the tough part of chemo is completely over with! I feel proud and happy, almost giddy about it!!

Side note:
I am done fighting with Kaiser about my bill. They finished their review of my appointments and co pays and  said I owed them $140.00. I had receipts for some of it and my bill ended up being $115.00.
And they gave me a voucher that says I have met my out of pocket and deductible and do not have to pay the co pays any more. So today I showed my voucher  and it worked great!
However, I still deep down disagree with what has been billed but its to my favor! I guess my policy says I am suppose to pay for the visit with the Dr. and not the copay for the infusion visit the same day. I see they have not billed me for most of the visits with the Dr. (today I think she used the voucher for both the Dr's visit and the infusion so today I think was free of co pays!) so until the end of 2010 my Herceptin visits every three weeks will not have a copay.
I do have to pay the $10.00 copay for the lab work I do before every chemo visit.
I figure if they did a research on it, its not my fault what they bill me, if its less money!

Appointment Dates

Yesterday, August 19, 2010 I went to Kaiser for my weekly infusion of the Herceptin drug.

Since my next visit, next week will be the last of the chemo treatments, I asked the nurse "when do I stop going weekly for the Herceptin and start going every three weeks"
She gave me a post it note that shows my next few appointments and they are as follows:
August 26th Taxol and Herceptin (last chemo!!)
Sept 2nd, 9th, 16th than I get two weeks off  - I wont know what to do without an appointment!
then I go back on October 7th and from that date will start on the every three week program until my projected end date of.... June 16, 2011

I also have my first appointment on Sept 7th with the Radiation Oncologist to start my radiation treatments.

I also asked the pharmacist once I am done with the Taxol drug, how long do I have to wait until I can have nice big glass of red wine or a margarita in celebration of the worst part being done. His comment was to wait  3 or 4 days to make sure its out of my system. And then he thew in the comment they they all should have a drink for me. (I don't want to take any chance of mixing chemo drugs with alcohol).

I am so excited for next weeks appointment, even though I know what pain is involved and how I will feel, I wish I could go early -- just to get it over with!

But I have a lot going on between now and then. This weekend is busy with me hosting a Stampin Up party on Saturday afternoon and on Sunday having  a BBQ for the congregation.
I think its things like these that have kept me going all this time, along with, of course prayer to Jehovah to have the endurance and the right attitude and to make the right decisions for my health care.

Round 7 sickness

This time I felt good on Friday and some of Saturday, just really tired feeling. By Saturday night, I was feeling really tired, my legs really sore, my feet -heels mostly, feeling really numb. My legs feel like they weigh a ton, ache and shoot pain.  I am constantly moving and stretching my legs to make the feeling go away. Saturday night Richard talked me into taking some Lorazepam and it helped a little bit, made me sleepy mostly. Sunday I took some more and spent the majority of Sunday sleeping.
Today, Monday, my feet are still really numb and when i stand up, or take a step it feels like my legs are going to buckle under me. So am taking it easy. Will make myself go to work tomorrow on Tuesday.
I think this is better than the other symptoms of having to throw up!

Chemo Round 7

Yesterday August 5th was round 7 of chemo.
Appointments were a little later than usual this time. My appointment with Dr. Richert-Boe was at 10am and it only lasted about 10 minutes. She gave me hug at the end and said I am doing really good. My blood test on the labs from yesterday showed my hemoglobin to be low. The range is 12.0 to 16.0 and mine came back this time as 11.8.When I asked the Dr. about it, she said it wasn't low enough to worry about and that it actually is really good , usually at this point in the chemo process its way lower than that for most people.

Picked out my chemo chair at about 10:15am, there was a lot of people there, it was pretty busy,  got my port accessed and I sat there for what seemed like a long time. They had to order my meds(IV bags of meds) from the pharmacy. The Kaiser phone lines and computers were down most of the day, so they had to figure out by hand the medicine ratio's and that took time.
First they gave me my pre meds, the Pepcid, and the Decadron (this is for anti nausea med). Then about noon I got the benedryl. By this time, Richard was long gone ( he had started his day out at 4:30am and went to work in Portland, made a few deliveries and got home about 9:15am, took me to Kaiser and when my mom showed up about 11am, he left to go home and take a nap) while I got my Benedryl, mom went to get us some lunch, (Subway sandwich for me of course! what would lunch be without a sandwich!!) which worked out good, it gave me a chance to take a little nap/rest since the Benedryl makes me sooo tired for about 20 minutes.

Once the Benedryl was finished I got the Taxol (chemo drug) started about 1pm. Then was that was done, I got about 20 minutes of the saline, this is to clean out the port and flush it. Then I got the Herceptin.
I didn't leave Kaiser until almost 3:45pm. Seemed late, but I got a little later start than normal.

When I first get there, they give me a bracelet with  my name, date of birth and Kaiser number on it. Then when I get any of my meds, two nurses verify the IV bag information with my bracelet and ask me my name and date of birth. This way, they aren't giving meds to the wrong person. Nice they are so careful.

As for my port, not sure if i explained  how it works. Its completely under my skin on my chest and it has three points, like little bumps. Before they put the needle in, they wipe the area with alcohol and another type of cleaning solution, than they put the needle  in the center of those three points, they tape it and put a big bandage over it to keep it connected and safe.That way the needle is connected to the IV tube.

Last time my legs hurt really bad and were really restless. This time, about 8pm I could feel my legs starting to ache. It wasn't too bad last night and I didn't thrash around in bed like I did last time.
This morning I woke up feeling really good. my legs don't hurt at all, my heels always feel numb from the meds but not as bad as last time, and  not sick to my stomach. My cheeks are really flushed and red, but with a little make up, they will look fine! Not sure what tonight will bring.

only one more chemo treatment left!!!!!!!!!!!!!!!

Follow Up with Dr. Chung

This morning was a follow up visit with the surgeon I had who did the lumpectomy in February, Dr. Kelli Chung in Vancouver at the Mill Plain Kaiser.

I was suppose to have a follow up visit at the 3 month mark, which surgery was in February, so that would have made it May for my follow up. However, I didn't know I was suppose to have a follow up visit and never got a call from Kaiser until last week. Its almost at the 6 month mark now!

Appointment was early today, 8:45am. So Richard and I went to Vancouver, my appointment was about 10 minutes long!
All she did was check my scars, asked a few questions, checked my port and that was it.

Dr.Chung said I should have a mammogram in January or early February 2011 and than schedule an appointment with her after that. Than the next visit would be a year later  (2012) when as she put it, " we will have a two year graduation party at that point for you ".

This appointment did give me the chance to ask her about Lymphodema, which can occur in the upper arm once the lymph nodes have been removed. (this is when the other lymph nodes can not drain correctly and the arm swells up, there are exercises to do to help relieve the pressure but once you have it, you cant get rid of it.)  She said if I haven't had any problems with my arm yet, most likely I wouldn't, can't guarantee that , but keep using my arm as normal but keep an eye on it.  After surgery and removing lymph nodes 10 to 15% of patients develop Lymphodema.
So I feel pretty safe knowing that my arm is as normal feeling as it was before the surgery.

Between the chemo appointments, I am feeling really really  good. The Herceptin that I am getting weekly doesn't seem  to make me sick in any way. So the side effects only come after my chemo treatments.

Round 6 Sickness

Just taking it easy.. not trying to be too active and over do it.
However, on Saturday, I talked myself into going to a Stampin Up card making party, and I am pretty sure it was too much. I had fun though, but probably should have stayed home.
Sunday I was down and out, just not feeling quite right, really tired.

But the side effect of the Taxol is what I have been fighting the most. I guess the best way to explain it is like restless leg syndrome.  My legs start to hurt and feel like I have to stretch them but the stretching is never good enough. I thrash around in the bed because they constantly hurt. Sometimes the pain just shoots through my leg or knee. And when I walk, it feels like my legs are going to give out from under me. I guess it feels like a growing pain in my leg. So I haven't been sleeping too well, even with the help of some Lorazepam.
As time goes by, it will work its way out of my system, until its time to go again!

Chemo Round 6

Yesterday, July 15th was round 6 of chemo.

Richard took me this morning. I didn't want to go (I dont think there has been even one time I have wanted to go!). I had told him that they didn't care about me. It was just their job and they were only there because they got paid to be there.. so of course he had to tell them all that!
On my after care page from the Dr. it says, We Love You and a smiley face inside a heart. And on my aftercare page from the infusion nurse it says You know we love you!

I really like my oncologist, Dr. Richert-Boe. She isn't a ball of fire type of person and not much personality but I really like her. After her visit she gave me hug and said they all love me!

My appointment was with the Dr. at 8:30am..a little early for me since I am not a morning person, but it gets the appointment over with earlier! I was in my chemo chair by 9:00am
Today was another loooong day. Not as long as last time. I was out today at 2:45pm.

Before they give me the chemo drug Taxol, they give me by IV Benedryl and Pepcid. The Benedryl almost instantly made me sooo tired I could keep my head up I felt like my head was bobbing around on a wobbly neck. I had to lay back for a little bit. Richard was still there and my mom had showed up too, so they visited while I rested and tried to focus on what was going on for a little bit.
After these meds. I got the Taxol. This is what takes so long, they start out giving it really really slow than increase it amount but it over all takes the majority of the time, and then about a 20 minute rinse of saline to make sure my port is doing OK. Then they gave me the Herceptin, that took 30 minutes than another 15 minute rinse of the saline. It all takes  more time than I want it to take!
Mom sat and visited with me the entire time and than took me home. She didnt have to, but I am glad  she always does.

I got home at 3pm and went directly to bed until 5pm. I was so tired.  After my nap I sat outside on the patio and enjoyed the really nice summer weather.
After Richard went and got us dinner I came inside and took some anti nausea medicine. I took one of the Compozine and before bed a Lorzapan to help me sleep and calm me down.

Today, July 16th,  feel really good. Going a little slow, just a little queasy but not bad. Stayed home from work to take it easy and make sure there weren't any weird side effects. I am wearing my pink Survivor T shirt with the pink ribbon for cancer awarness on it that a friend at work gave me. Reinforce in mind that word Survivor!

I asked Dr. Richert-Boe about follow up treatments since several have asked me when will I be tested again for cancer. This was her comment:
When I am done with the chemo and radiation, I will be checked every three months for 2 years, then every 6 months for 3 to 5 years, then once a year after that for possibly 5 years.

I had my blood lab work done on Wed  July 14th (always the day before my chemo)  and one of the tests called ALT Serum showed my last result on 6/23 as a count of 23, this time it on 7/14 it was a count of 55. The standard range is 10 to 58. So I was worried that by next time, it will be out of the "good" range but the Dr. said no, it was just fine.
This test according to Kaiser is: an alanne aminotransferase (ALT) test measures the amount of this enzyme in the blood. ALT is found mainly in the liver but also in smaller amounts in the kidneys, heart muscles and pancreas.  ALT is measured to see if the liver is damaged or diseased. The low levels of ALT are normally found int the blood. But when the liver is damaged or diseased it releases  ALT into the blood stream, which makes the ALT levels go up. Most ALT levels are caused by liver damage.

So since I had read this before my Dr's appointment I had asked her since this had me worried about liver damage. But the Dr said my range from the blood test was just fine and not to be worried about it. So that took my mind of that little worry.

glad this one is over... only 2 more chemo's to go!!!!!

Herceptin Med 2nd Visit

Yesterday, July 8th I went for my second Herceptin med treatment.

Again, it took a full two hours. I sat there all connected to my port and the IV machine/pole for 40 minutes before I had any medicine. But once the meds showed up, it went pretty fast there.  Doesn't seem to have any side effects yet. I say yet, because this is the med I am on weekly until the end of August and then it will be every three weeks for the next year. 

Now I just have to coordinate  my lunch hour on treatment day.

Herceptin Med

Thursday July 1st was one of my first weekly appointments for the medicine Herceptin.

It took a full 2 hours from the time I got there to the time I left.

This drug is not a chemo drug and until my chemo treatments are done, I will be getting this med every Thursday. I am going to try to go on my lunch hour to cut down on my sick FMLA time away from work for part of the appointment.

I did really well. I was expecting to have some sickness since the most common side effect is flu like symptoms. However, I didn't feel sick at all.
For the timing on this first appointment I was a really watching it since the next day on Friday July 2nd was the beginning of our three day District Convention of Jehovah's Witnesses in Portland which is about an hour drive to get there. And I was leery that I would be sick and not be able to go, or have to leave early. My goal was to make it to my seat and stay put. However, I am not feeling any sickness so have been happy!

Once my chemo that is every three weeks is done (the end of August), than this Herceptin medicine I will get every three weeks for a year.

And I am starting to lose my eyelashes and eyebrows now. I bought some fake eyelashes but haven't tried them yet!
One of the side effects of my new chemo drug, Taxol, is hair loss. So I am pretty sure I will lose the rest of them.

Round 5 sickness

This time has been easier  with the sickness. I have not been as nauseous as before. I only took one med one day for feeling sick. Really tired and going slow but not like before.
In fact I went to work on Tuesday feeling pretty good, and better as the day went on.

So maybe Dr. Richert-Boe was a little bit right about this being the easier part of the chemo..  we'll see with the next treatments. I cant jump in and say for sure yet.

2nd fundraiser

I also have to add that my co-workers had another fund raiser. This one was for salads at lunch time.
Everyone had their choice of what they wanted on their salads. The choices were a lot. Cucumber, tomato, broccoli, cauliflower, sugar snap peas, mushroom, red pepper, red onion, cheese, beets, celery, olives, eggs, bacon bits, croutons, sun flower seeds. Than the dressings: Ranch, thousand island, vinaigrette, Italian.
And if you wanted grilled chicken or turkey/ham
Again, they all amazed me. They raised $744.65. I cant say enough about my work mates, they continue to surprise me with all they do and how much they care. I know some gave, who don't really know me since we work in different depts and different buildings. Thanks goes to everyone who gave and worked on this.
Richard and I don't know how to say thank you enough!
After posting this, I got an new email saying they had more funds come in, one was $6.00 and one for $100.00. So the new total for this is $850.65. ************Absolutely Unbelievable!!********

HER-2 questions

Thanks for the questions!! test me! I feel I know all about this, I have do so much reading about it!


My cancer books explain the HER-2 as this:

The drug Herceptin is a monoclonal antibody directed against HER2. HER2 is a bio marker that is tested on your initial biopsy.  Herceptin is an antibody that targets HER2, a protein on the surface of the cells of certain breast cancers. HER2 is an oncogene, a non-inherited gene mutation.
You have a 20 to 25 percent chance of being HER 2 positive. If this is the case, Herceptin can improve the effectiveness of chemotherapy. Not classified as chemotherapy, Herceptin belongs to a new group of treatments called targeted therapy.  Herceptin is an antibody designed to target HER2 and shut it down.
It is given by IV either once a week (which I am doing) or every three weeks using a triple dose. Either method is equally effective and equally safe.

The down side is a risk with Herceptin. About 5% of patients develop some weakening of the heart muscle, so monitoring of the heart is needed. (why I have the muga scans). Fortunately, if this type of heart problem occurs, it can improve upon discontinuing the drug.

Hope this helps explain it. Its a little confusing I think.

Chemo Round 5

Thursday June 24th, chemo treatment number 5.
This was a stressful day. Richard and I pulled into the parking spot at Kaiser and I started crying. "I don't want to do this. I want to quit." So we sat there for a little bit until I had some composure back.
Even though Dr. Richert-Boe and the nurses say its easier with the two new drugs. I was so sick last time, that that's all I can imagine feeling again.

This time my Dr was on vacation, so I met with Dr. Chandler. He was very nice, looked at my surgery scars,  asked me several questions about how I am feeling, (started crying again) and he was understanding. Suggested some other therapies like yoga, prayer, walking, reading, painting etc and said its OK to feel how ever I feel. If I feel like crying, than cry, if I feel down that's OK too. No one knows what chemo is like unless you have been through it.
He than addressed a few questions to Richard. Being the spouse is hard, watching your loved one not only go through the physical part of chemo but the emotional part too.
Dr. Chandler said the test results from the MUGA scan came back really good. He said it tests the strength of the heart valves. No one is perfect and had 100, mountain climers have about 90 and mine started at the first test with 86 and I am now a 84 which he said is really good. He also suggested another test in about 2 months.

I than went and picked out my chair. Today was a loooooooooong day. My appointment with the Dr. was at 8:30am and I got to my chemo chair at about 9am. that's not unusual. But I left for the day at 5pm. I was there  for 8 1/2 hours this time. They told me it was going to be a long day ... but not this long!

Started the two new drugs. But first they gave me some benadryl and prilosec. Than all of a sudden I got to feeling sick like I was going to puke.  So they pulled the curtains on both sides of my area just so they nurses station could see me which was nice privacy. And I kept them closed the whole time I was there. The nurses were running around looking for a little puke tray. And sure enough  I puked. Once that was over, I was feeling a little better.  I think it was just too stressful in my mind and I was too nervous. I felt more nervous than I did the first couple times I went.

After that, they gave me some Lorazepan for stress. So we had to wait about 30 minutes before they started the  first chemo drug.
Richard brought me a Subway sandwich for lunch which I just nibbled on for while. A little leery to eat the whole thing.

The Pharmacist came by and suggested that I eat foods that are soft and easy to digest. Nothing too spicy, or acidic like spaghetti sauce, Mexican, tomato based. Not sure if I can do that!

The first drug is Taxol. And to make sure my body accepts it OK with out any reactions the IV is really really really slow for the first 30 minutes than a little faster after that.
Once that drug was done, they gave me Herceptin. This is not really a chemo drug, but a synthetic hormone made from the Yew tree. This is because my cancer tested positive for the HER2 hormone.
Once both drugs were done they had me just sit there for about 30 minutes to watch for any reactions.
No pink or blue or green urine with any of these drugs!

Richard brought me this morning and stayed for  a little while. Binnie stopped by for a short time. Than mom and my cousin Tim who is visiting from Minnesota stopped by. Richard came back and he left with Tim. Mom stayed and took me home.
I had a lot of visitors today and I needed it since it was such a long day.

I have been going every three weeks for chemo treatment. I will continue that, but add in a weekly visit every Thursday for the Herceptin. I will do this for the rest of the chemo time, which is less than 12 weeks, since I am more than half way done now, than I will every go every three weeks for a year just to get the Herceptin.
Still a long road ahead of me but getting closer to the end of the chemo.. only 3 treatments left now.
I figure I should be done  the first part of September.

Blood Test

The day before my chemo, I go to Kaiser to have my blood tested. They take two small viles.  Today was that day.  So after my lunch I went to Kaiser. By the time I got back to work my results were already available online. My counts are good. Not too high, not too low.
Last time Dr. Richert-Boe said that was a little uncommon that they are staying so good. Not that anyone is complaining about it!
If the counts would be too low, than they put it off for a week and I would have my blood  tested again, which in turn just prolongs the entire process.
I am glad  my blood is holding up and counts are doing well.

                                                

Muga Scan number 2

Yesterday, Monday June 14th,  I went to St. Johns Medical Center Nuclear Medicine Dept for my second MUGA scan.

I had one of these done I think it was in March.

They give you an IV, and in that IV is a protein that attaches to the red blood cells, send you back to the waiting room for about  20 minutes.

After that, they had me lay on bed, platform is more like it, its about a foot wide, strap in you in with a wide fabric belt, and make you lay extremely still. You move towards the circle of the machine, but not into it. Then these square plates come up from the sides and are so close, they almost touch you. If you are afraid of being enclosed, this would freak you out. They are so close that I tried to look at the markings on them, but it was blurry it was so close to my face. So I just laid their with my eyes closed.  After about 20 minutes, the plates move away and they unstrap you and your are done.

This machine and test, is testing the strength of my heart. The Adriamycian chemo drug that I have been on can be really hard on the heart . So now that I am done with that drug, they wanted to check my heart again.
they said my Dr. should have my results in a couple of days.

On my way out of the hospital, I stopped at the Starbucks on floor 2 and got a coffee. Since the rule was no food or drink 4 hours before hand,(that wasn't too hard) and the fact that I deserved a coffee, I got one!

The appointment was at 1pm, so I left work about 12:35pm, and I left the hospital at about 2:15pm.
This time this appointment seemed to take longer than the last one they did.
I stopped off at the house, had some lunch and went back to work.

Fund raiser at work

To my surprise, my co-workers and friends at work raised $754.00 to help with my medical expenses. I explained to one who helped take the lead, that I have no way of repaying anyone for what they have done. Her comment was that the repayment is for me to get better, to get healthy. It is soooo generous that it made me cry when I was told how much they raised.. To think I have that many friends at Red Canoe Credit Union who care.

The cookies they made by hand were sugar cookies with pink frosting in the shape of the cancer awareness pink ribbon and were  frosted, sprinkled, bagged and sold within the credit union.. The three of them, Sharla, Yolanda and Kris put in a  lot of time, effort and love to do this. Thank you to them. And thank you to all who participated and gave. It means so much.

Feeling Better

I think with the help of the BRAT (Banana's, Rice, Applesauce, Toast) diet, I am going to pull through this time.
Those foods helped me get some food in me that I wouldn't throw up and that has helped.

Now after 10 days of no coffee , I just need a good Starbucks and I will be fine!

Still Home...

Kaiser oncology closes at 5pm. after that if you need them, you are to call the Sunnyside Kaiser and ask for an oncology nurse who is on call.I called Longview at 4pm and never got a call back so had to call Portland.

I had been so sick and not keeping any food down since Monday night so  Richard forced me to call. Of course, they want to know why you are calling Portland and not Longview blah blah blah.(so far, for this entire situation, I am really fed up with Kaiser and how they treat everyone, decent insurance coverage but customer service stinks) So the nurse on the phone goes over a list of questions that takes about 20 minutes, has me take my temperature while on the phone with her and says to eat a little bit of the BRAT diet. Bananas (which I dislike everything about them), Rice, Applesauce and Toast. to try a little of those foods, take a medication I have a little bit left of and to lay on my right side since the stomach empties out better on the right.(never heard of that one before). So I try it. Spent a rough night waking up every hour still feeling bad.

Got up yesterday (Wed) morning and was still puking. So I have Richard call the Longview Kaiser and they were much nicer. Gave some helpful solutions,  like no full strength juice because its too sugary on an empty stomach - I had been drinking orange juice ,the peppermint candies I was eating because the peppermint sounded and felt soothing wasn't the best either, .....as was the pizza  (it sounded really good and tasted really good!) I had for lunch on Monday was probably not the wisest choice of food,so  no greasy foods, no sugary foods and they prescribed some more meds. Had me put one of the meds under my tongue rather than swallow it, that way it can't be thrown up. This was the key. This helped I would say within the hour. For dinner I had some white rice with just a little BBQ pork on it for some protein and a little teryakki sauce.. not the best tasting but it was food. And since I had not had real food, only saltines, some tortilla chips and ginger ale  for almost two days it tasted pretty good.!

Today I am suppose to call them back and let them know how I am doing and how the meds are working.  Today I feel good. Just really really slow moving due to being down for so many days and get tired really easy.
Tomorrow, Friday I will go back to work.
This has been a long sickness from the treatment. According to the Longview Kaiser, not unheard of, but can happen that many days out from chemo. I think I am on the mend!

Melt Down and Sick Today

Last night I had a melt down. Was a crying mess. I want the chemo to be over with. Wish I would have just done the radiation.  Want the feeling sick part to go away. I don't want to walk past a mirror and see either me with a wig on, or me with a hat on or bald. I want my hair back. I want my old life back. I am tired of the Doctors and the appointments. Tired of having to be careful of what eat, who I am around, how much energy is what I am doing going to take, how tired I am.

After my loving husband re-assured me that we are doing really well, a trooper as my mom says I am, and we will make it through this, we are half way with the chemo, he than says its OK to have to cry about it once in a while, it is scary, and it is tough. It could be worse and I know that. I know he is going through this too and must be scared. Its not easy to watch someone you love be sick.

Spent an OK night, but woke up this morning and had to throw up. Richard thinks I might have over did it a little bit yesterday and now I am paying for it. So no work again today. I am afraid to eat anything but yet feel hungry. What a triangle!

Feeling ok

Today is Saturday and I am feeling just OK. Just a little tired so took a 2 hour nap. I feel like I am waiting for the sickness to start.  I don't have much ambition and am afraid to do too much . Nothing like waiting to be sick.

Usually Saturday is one of my worst days, so this is a  little odd that I don't feel sick yet. Not that I am complaining about not being sick!

Half Way Done With Chemo Round 4!!!!!!!!!!!!!

Yesterday June 3rd was my treatment day. I tried getting Richard to drive the opposite direction, I even suggested we go garage saleing  (i don't do garage sales) anything but take me to Kaiser......This is  the fourth of eight treatments.    I am now half way done with chemo.!!!!Yippee.
When I met with Dr. Richert-Boe, we talked about my blood counts. She said I am not even close to having low counts, that its pretty unusual but I am doing really well. Hugged me and told me to go pick out a chair.(the chemo chair I will be sitting in for  the next few hours) Said the next two drugs I take for the next 4 treatments  should be easier on me.
Got around the corner into the infusion room, it was right at 9:30am  and there was only lady at the far end. So I picked the opposite end. Richard was with me and my mom showed up not to much longer, maybe around 10am. Richard left and my mom stayed with me the entire time. Then about 40 minutes before being done, Brenda came to visit. It was the first time she had come to see me there.
It seemed like a long day, got there a little before 9 for my Dr. appt and left just before 1pm.
Got home, and went to bed for a couple hours. As the evening rolled along, I got to feeling really sick to my stomach. Made myself stay up until 9:30. Slept well but woke up a lot feeling like I wanted to puke but never did.
Woke up this morning and felt pretty good. Made breakfast for Richard and I . But than I felt worn out so took a two hour nap, and have been taking it easy today. just watching some TV. The nurses both told me that last time I probably did to much the day after chemo and to take it easy this time. We will see how I feel later in the evening, and tomorrow , usually Saturday has been my worse day.

Lost My Wig!!!

Today I decided to go for a massage after work. I had mentioned to Kris that I was afraid I would be on my front side and my wig would fall off onto the floor. This was the first massage I have ever had. After filling out the paper work, the girl asked me about my cancer. I told her that tomorrow is my half way through chemo.
At one point, Are you ready for this:       I was on my back and the lady was rubbing the back of my neck. All of a sudden I thought I could feel my wig moving up the back of my neck. At that moment, the lady says to me, " um, your hair..."
I didn't know what to say, so just said, " oh let me take it off."!!!!!!!!!!!!!!! and I laid it on my stomach.
How embarrassing is that? I didn't know what else to say or do! And I am pretty sure this was the fist time she had someones wig come off!

Updates

Not much to update.. feeling really well. A little more tired than normal I think.
Still fighting with Kaiser about my co-pays. Chemo is considered a specialty office visit and is $25.00 each time. Since I have met the deductible and the out of pocket amount, I don't have to pay any more co-pays for the year. However, every time I go, Kaiser bills me later for the copay, I call them and we go through this routine. They tell me that it has been coded wrong in the computer and they change it.
I have a call in to two people who work in the billing dept to see why the computer keeps "un" coding my account every time I go. I probably wont hear from them since Kaiser is really bad with returning phone calls.
Today was informed that at work that on June 1st there will be a fundraiser for me. Yo, Sharla and Kris have banded together and will be in charge of selling cookies at the Main branch, the Kelso branch, the 30th ave branch and the call center.
Its nice to know that so many people care. Here is the email that went out:
WE WILL BE HAVING A COOKIE FUNDRAISER FOR NANCY SMITH ON TUESDAY, JUNE 1ST.
COOKIES ARE FROSTED SUGAR COOKIES AND WILL BE $3 EACH.
COOKIES WILL BE AVAILABLE AT 15TH, KELSO, 30TH AVE AND THE CALL CENTER.
DEDUCTION SLIPS WILL BE AVAILABLE.
THANK YOU ALL FOR YOUR SUPPORT
ANY Q’S SEE YOLANDA, SHARLA OR KRIS B.
Richard talked to an old school friend in California tonight and his friend Randy said to tell me that I can do it, hang in there and that he is a cancer survivor also. Its nice to think if survivors and cancer in the same thought.
Still dreading June 3rd for my next treatment.

Sick

So I guess my last report was done a little early. I tried to go to work on Tuesday. I had to be there at 8am. I got there about 7:50am and by 8:05am I think I was in my car going home. The feeling of throwing up was so strong, I didn't know if I could even talk on the phone at work to one member, none the less all day long. I felt horrible, so went home. And I got the feeling from my work mates, that I looked horrible! Called my mom at 11am hoping she would tell me she was on break from being in the door to door ministry work and was at Safeway. ( I wanted lunch and had no food, and Richard was in Portland). My wonderful mom, dropped what she was doing, brought me the lunch I wanted from Safeway (just a turkey sandwich, my all time favorite lunch food) and spent the day with me. While I slept, she did my ironing! What a mom! By about 4:30pm the food I had, one piece of toast for breakfast, half of a little container of applesauce, and half the sandwich I had decided it didn't want to stay in me and I was in the bathroom puking. This is a first for the actual throwing up.I always feel like I can, but haven't until now. Once I did throw up, I felt a little better for a while until the nauseated feeling came back. Spent a rough night in the spare bedroom alone tossing and turning and feeling sick, but close to the bathroom! When I am nauseated, I have difficult time eating. So then I don't know if I am just super hungry or sick to my stomach. They say to eat a little bit when your nauseated, but that's really tough to do. Today, Wednesday, I went to work. Spent most of the morning eating saltines, 7UP and peppermint life savers, with my head down on my desk. But by the time it was going home time rolled around and even now I feel pretty good. I think from here on out to the next appointment should be much better! This time, it seems to have kicked my patootie for several days!

Round 3 sickness

So far the only sickness I have really felt this time is some pretty bad nausea Thursday night. Went to bed feeling sick. But Friday morning, woke up feeling pretty good. Sat outside in the fresh air and took it easy in the afternoon. By Friday evening I was really tired and have been spending most of the days sleeping. Napping every couple of hours. Kris brought over some home made lasagna, french bread, veggies, ice cream and flowers Saturday evening (more for me since Richard doesn't eat lasagna!!) But I haven't had much of an appetite. The only nauseous feeling I have had was Thursday night. So this is a little different, but easier to deal with than the constant having to throw up feeling. I have still been taking my all meds to keep the nauseous feeling down. And tonight is my last 2 pills for this round! One more round of chemo scheduled for June 3rd with the Adrianmyacin and Cytoxan drugs and I will be half way done with my chemo. Thanks for every ones kind words, gifts,phone calls and help so far. Its so appreciated!

Chemo Round 3

Today was my third treatment of chemotherapy. Richard had to work so mom took me to Kaiser. She stayed with me through my Dr's visit and then left for a little while. Dr. Richert-Boe asked how I was feeling? Any mouth sores? Any fevers? and then checked my heart beat, ankles for swelling ( a sign the heart is having problems) and said I was doing good. As she was ready to leave the room and said I was doing good,I am almost half way done, she patted my leg and that set me off. I started to cry and then the Dr. have me a hug and reminded me that crying is good, it relieves stress. I had told Richard this morning that I didn't want to go today. maybe I just wont show up. I hate going there knowing I am doing something that is so terrible to my body and is going to make me sick. In the treatment room, there was only one man there, so I sat at the other end of the room so there was some privacy. By the time I left, there were about 3 other patients that had came in. So my visit was a quiet one. Since I was there by myself, I had the TV on and sat and read. Everything went very smooth this time, no hang ups. I went in at 10am and mom and I were home by 1:30pm. Richard got home right after I did. I was tired so crawled into bed and took a nap until 4pm. Am feeling pretty good so far..... just waiting for the nausea to hit, and I know it will. So I am sitting here at 5:08pm eating cookies and milk!!

Blood Test

Since today is the day before my next scheduled chemo appointment, I went to Kaiser on my lunch hour to have some blood drawn to see if I am healthy for treatment tomorrow. I got right in to Kaiser. However, I was a little disappointed that the lab said they could not use my port to draw blood. I was under the impression that they could and would use my port and save the arm from being stuck with a needle each time. The lab tech called down do triage to see if they could but was told they very rarely use a port to draw blood and its only on Dr.s orders when they do. Tomorrow I will be asking about that. Every thing went fine today. Tomorrows appointment is again scheduled with Dr. Richert-Boe.

Food Cravings

Beth asked if I am craving any certain foods. Thanks for the question!! Lets see... a big bottle of wine, a margarita,home made pomegranate martini, home made sangria, all sound really good!!!! Seriously, I don't seem to be craving anything specific.. During the sick days, I do seem to want tortilla chips.. I think its the salt from them that I want. One night for dinner on a plate I had wheat thins and tortilla chips. Not the healthiest, but it was something. Another night we had grilled cheese and tomato soup.. seems like food during my sick days do not have much flavor and kind of taste like metal-not real appetizing! With the nauseated feeling and not eating much due to this, some times I have a hard time telling the two apart so eating a little of anything during that time is good. The Dr. wants me to be drinking a lot of liquids to flush the drugs through my system. This I have a problem with as I am not a big liquid drinker to begin with. but I try to always have something close to be sipping on. Whether its apple juice, orange juice, water, ginger ale, 7-up or milk. I try to stay away from the soda pops and coffee during these sick days. Apple juice is my favorite.

Feelin' Good

I have included pictures of the two wigs I found on Saturday when mom and I went back to Portland to the Wig Gallery on Broadway.
    I think we were in there for one and a half to two hours!!! I think I tried on 20 wigs. Its harder than one thinks to buy a wig! I wanted something close to my natural color .. everything that is semi dark has a black tone and I don't look good in black hair! Or it has a red/orange tint and I don't look good in that either.

    I was determined I was not leaving with out at least one wig! The guy working in the store was helpful and his mom who owns the store offered to trim the bangs for me if I bought one. I ended up buying two! The long one, is really full feeling and I have wore it twice, both times with some of it pulled back with a barrette. I really like both that I found, and mom was so patient with me. Thanks mom!!
    For those of you wondering how I am feeling, I am feeling really good. If it weren't for the fact that i have no hair and have to wear a wig all the time, I wouldn't know that I have been getting chemo treatments.
My energy level is good, my appetite is good (wish that could change!), my attitude and outlook are good.
So far, its the 4 or 5 days following chemo that I am sick, than it goes away and I feel like my old regular self again.
    I asked my oncologist, Dr. Richert-Boe if as time goes on and the more treatments I have, will the sickness time last longer? She said it shouldn't.
Next time I go back is next week, May 12th to have my blood tested to make sure the white blood cell count is not too low. If its not too low, I go back the next day on the 13th for the chemo. If it is too low, than I go back, I think its a week later.