Wednesday, July 30, 2008
Just a quickie to tell you that I had my 4th and FINAL Chemo yesterday.
The earthquake was certainly a diversion.
I just got back from the hospital a short while ago to get my final neulasta injection. A big thanks to J and M for the company.
Now I am off to take a nap and munch on some ginger snaps to fight off the nausea.
Monday, July 28, 2008
In my dream it was Tuesday, 7/29 (tomorrow) and I had taken Sully somewhere and at 10:30A I suddenly remembered that I was scheduled for my last Chemo only I had forgotten (up until that moment) and I hadn't taken any of my pre-Chemo meds and I was now a half hour late. I immediately called the office and explained the situation and was told to come back next week or the week after -- I was really upset by all of this and I pleaded with the oncology nurse on the phone that it was my last one.
Thankfully, it was just a dream.
And the truth of the matter is if in fact my counts are really low tomorrow and I am told that I can't have Chemo I know it will happen at the right time when my counts are high enough for my body to handle it. I don't think that will be case. I am feeling pretty good.
My last Chemo is so close. I look forward to saying goodbye to this part of the process. I am ready to focus on regaining my strength and rebuilding my stamina.
And yes, I started taking my pre-Chemo meds this morning!
Saturday, July 26, 2008
I spent some time at weSpark this week attending my support group and creative writing.
In creative writing our facilitator passed out nectarine slices as one of our prompts -- as we took our slice our time to write began. This is what I wrote.
It tastes like summerOur next prompt was "New Shoes" this is what I wrote.
It smells carefree
It looks like a slice of the sun
So what does it mean to me?
Summer is a stress free time
An opportunity to move at an easier pace
Somehow the pressure of spring, winter and fall melt away during the summer
I am not sure why this is --
Conditioning of childhood
Longing of a simpler time
Being tucked in at night
Being read to
I look at the children at play and think don't be in such a rush to grow up
Relish your youth
Like the nectarine slice take small bites to savor it
Maybe that way it will last a little bit longer
There is nothing like a pair of new shoes. The Psychic told me several things when I had my session with him six years ago. He said her hair is long, she is laughing, she is pain-free and she has lots of shoes.I look forward to the new week and celebrate that my last Chemo will be completed.
My Mom always had a tremendous sense of style from head to toe. She passed her love of shoes onto me.
When I finally outgrew having to wear black and white oxfords in a double "A" it was glorious --
I could be like the other kids and get Keds -- Red Keds and Blue Keds. Those simple sneakers became so important to me. I was no longer the skinny kid with the "special" shoes. I was a regular kid.
Monday, July 21, 2008
I want to know how you are doing?
How's your health- in all respects?
Hi,I continue to be truly grateful for all that I am able to accomplish in a day. I know that a huge part of my healing is due to the incredible support, prayers and love that continue to come to all of us.
Great to hear from you.
I have responded well to all treatments thus far and have been using all of this as an opportunity to be very clear about what my wants and needs are...
Physically I feel really strong and Mentally, Emotionally and Spiritually even stronger.
The blog that we started has been extremely cathartic.
I am able to select what I want to share with others...
I am uncertain about the future from a "career" standpoint as I have said farewell to the work I have done for so many years and have no idea where I will land once I am given the all clear that I can return to the workforce.
In the meantime I go to the Cancer support center whenever I can and take a myriad of classes there. My favorites are Tai Chi and Creative Writing. I have yet to take part in the energy work that they offer but will be scheduling that this week. My support group has given me a lot and I have had the opportunity to speak with a couple of women privately who are now at the beginning of their own personal journeys. I was even asked to be part of our local hospitals "breast friends" network (in association with the American Cancer Society) -- so I feel like I am doing something right. :)
Just last week I picked up the guitar and started playing again which has been a tremendous feeling.
It has been close to 10 years since I practiced.
Friday, July 18, 2008
My week included two great visits to weSpark where I participated in what I have found to be my favorite outlets there. My support group of course which I continue to get so much out of as well as Tai Chi and Creative Writing.
It was really nice to see so many familiar faces in creative writing.
Our first prompt was listening to the Matchbox 20 song "Smooth" (Ft. Santana)
"This life ain't good enough..."
Here is what I wrote in response to the music.
Okay, so I am tapping my toes to the beat and feeling the energy of the music but am left with a sense of "Wow, I am older than I think." Not old like put me out to pasture. I like to think I have a lot of good bits remaining albeit I am currently "follically-challenged" and I suppose it right to say in this PC world "Mammary-challenged" but if we look beyond the surface I can say I have a lot to be grateful for and to offer.I think that sums it up quite nicely for the moment.
That notion that 40 is the new 30 --
for me it is the notion that now in my 40's -- I get it.
It's not so serious.
You seek out what makes you happy and makes your own heart sing.
The constant celebration of the small things.
So you don't go around in high heels, hose and full make-up.
Who really gives a f**k.
It's liberating to be comfortable enough in your own skin -- to say
"Hello world. This is who I am -- Hairless, Boobless and ALIVE!"
Wednesday, July 16, 2008
Time for a little medical update.
I had my weekly visit to the oncologist yesterday.
You all will be happy to know that my weight has continued to stay consistent. I fluctuate by 2 pounds weekly -- This has my doctor very pleased since he wants me to maintain my current weight. My counts were very good. White Blood Cells at 10K so the Neulasta injection the day after Chemo really did its job and the bone pain was not as intense this go around. I did still feel the little teeny tiny bones in my ears but only for a short time.
I took several questions to this appointment and received some answers that I want to share with you all.
1) Hysterectomy vs. Ovary & Tube Removal
I am leaning towards having all of my remaining lady bits removed for a myriad of reasons. My ONC is not in disagreement. A few things need to be discussed before a final decision can be reached. There are the results of one more genetic test (CHEK2) that are pending. The idea of what poses less toxicity to my system and a conversation with my OBGYN. Next week I will meet with my OBGYN to discuss toxicity and a few other things. My blood is currently being tested for the CHEK2 gene (results take close to 6 weeks.) Since my cancer is hormone receptor positive I really have to do something to curb the normal hormone producing process in my body and the idea that once off Chemo (which has thrown me into menopause) to only go through menopause again at the "normal" time seems like a twisted joke. But I will patiently await more information.
2) How long after Chemo before starting on Tamoxifen or Aromatase Inhibitor with/without Zometa
My ONC was one of the authors on the recent big study on Zometa and feels it may not be the best option for me. A Bone Density study will be needed before any decisions are made along with the final decision on question 1. If my ovaries remain inside of me (for whatever reason) then I would be on Tamoxifen for the next 5 years (taken like a vitamin) but if I am without them then I would be on an Aromatase Inhibitor.
I DO NOT need radiation -- Yeah!4) Tumor Markers
These will be monitored regularly after my last Chemo forever and ever.The current post Chemo plan of attack is to begin the healing and recovery process for my mind, my body and my spirit and will include:
Port-A-Cath removal -- done in hospital but out patient procedure. I will need DDAVP prior (this is the clotting factor my body does not produce enough of [see earlier post on Von Willebrand's]). This may be done with the following or on its own. Since my body heals a bit slowly from surgery due to the VW my ONC wants to keep things as simple as possible since the end results will be the same.And now for my Chemo Side Effects update. I am continuing to feel good and am grateful for the good days and the ability to go out and about and do things. I am listening to my bodies cues and trying to not overdo it. If I need to rest I rest. The last couple of days I have been experiencing an odd feeling in my lower legs (knees down to feet) -- kind of a heavy feeling as if I am wearing lead ankle weights. No need to worry -- I am checking in with my ONC daily. My ankles are not swollen and I am elevating my legs even as I type this. I will keep you in the loop. I am (with my ONC's blessing) continuing to exercise lightly during this as well.
Lady Bit removal surgery -- pending answers to questions above. I foresee earliest I would be able to do this is in early September.
Reconstruction surgery -- if all goes well I can proceed with this surgery 3 to 6 months following my last Chemo (so I am thinking somewhere between 10/29/08 & 1/29/09) -- If you know someone who had reconstruction surgery and they were happy with their surgeon please let me know.
The buzz cut continues to make me happy.
The hot flashes continue to make me hot and I seem to be waking between 4A and 5:30A daily... only to go back to sleep until the alarm sounds.
That's my medical news thanks for reading.
Monday, July 14, 2008
I went on the treadmill for a good solid thirty minutes this morning and could feel myself getting energized as each minute passed. It felt so great to be able to exercise today. I am definitely feeling tons and tons and tons better since my Chemo last week.
My mission today was to get my hair (what's left of it) buzzed. I was starting to feel like a plucked chicken and that was bothersome -- only to me but bothersome nonetheless.
A lot of folks that have paved the way before me have opted to shave their heads like Mr. Clean the first moment their hair begins to fall out.
Since my chemo literature says that "you may or may not lose all your hair"
I have been more reserved in my approach.
Mike, bless his heart, is constantly telling me that I look cute without hair. He certainly makes this journey a lot easier (that is a huge understatement) and has continued to keep me laughing. Thank G-d I have him as my partner in life.
So here is my latest look compliments of Sully my in house photographer. I am still losing my hair and that will continue until I am done with Chemo and all of the effects of Chemo have passed through my system. So who knows if I will end up looking like Mr. Clean -- for the moment I am happy with my new less plucked chicken like appearance and relishing the energy I have today!
Friday, July 11, 2008
As I have shared before the Friday after my Chemo seems to hit me the hardest. This has been the pattern for the last three rounds. Thankfully I only have one more Friday to feel this WONKY. After getting Sully off to camp and gratefully being able to come home and rest for hours and hours I finally got a change of scenery and hit the couch. I just logged on (my home page is www.greatday.com) and had to share what was awaiting me as it really captured my thoughts and feelings for today.
Friday, July 11, 2008 -- Even though your morning may not have been productive, there is still much you can accomplish in the afternoon. Even though you've suffered some setbacks, there are still plenty of options for moving forward.
Even though you may disagree with what someone has to say, you can benefit greatly from understanding that person's point of view. Even though you find yourself in difficult and challenging circumstances, there is much value for you to create.
Even though you may feel like quitting, you have what it takes to keep going. Even though the goal seems far away, every step brings you closer.
Even though there are plenty of reasons for you to feel sorry for yourself, you can choose instead to renew your determination and enthusiasm. Even though your path is filled with obstacles, you can truly enjoy the sense of accomplishment that comes from successfully moving beyond each one.
Even though darkness may at times surround you, your light can shine more brightly than ever. Even though you may occasionally grow weary, there's always a way to renew and re-energize yourself.
Even though the road has its twists and turns, the journey is worth the effort. Keep going, keep growing, keep learning and loving and living with all the richness your precious life deserves.
-- Ralph Marston
Wednesday, July 9, 2008
Mike was able to take a break from his current work project this afternoon to take me to the hospital for my Neulasta injection. He has been working so hard on this project and doing an amazing job (not that I would expect anything less -- he is such an awesome writer.) Since our return mid afternoon I had a long nap (3+ hours -- clearly needed.)
Can I tell you how much I love rice and black beans -- perfect bland meal.
Followed by a Popsicle. The blander the better for me the next few days.
Your comments continue to put smiles on our faces. I know a number of you have wanted to start your own email network so feel free to email me and I will forward your email to the parties that wanted to reach out (specifically L and A) just make sure I have your email and then I can forward them on.
As always thanks for continuing to keep us all in your thoughts and prayers.
Tuesday, July 8, 2008
My magnificent Mike is under a huge deadline for a Disney Project (that I can't discuss) and feels absolutely terrible about not being able to be with me today -- I assured him I would be fine an he was very happy to hear that my little sis R was able to arrange her schedule and be my chemo buddy. M and I where able to talk a few briefly times during chemo (cell phones are amazing.) I am continually blessed to have M by my side and know that this has been incredibly hard on him and the rest of our family and friends.
Prior to being taken back into the infusion room I met with my Oncologist to make sure my levels were high enough to receive Chemo. Happily my white count was hire then then last week and the week prior but to be on the safe side I will be getting a Neulasta injection at the hospital in the early afternoon tomorrow to boost my white count.
One I got settled in the infusion area it was time to go through my drill. I scoped out the comfy chairs and waiting patiently for one to free up. Once settled I had my port flushed out a final time before I received an injection of Aloxi (ant-emetic) For all the hot flashes of late I certainly felt like my old self with my collection of blankets. Thanks to Beck for continuing to pile them on. We were up to four by the time we were done. And dare I say I could have used a 5th.
Thanks to Deb and Howard I was rocking out with Marla's Warrior Mix and Marla's Quiet Mix. A first opportunity to listen -- great CD's -- my kind of music. I can't wait to listen to the others.
My sis and I had some nice talks and hate a nice lunch and both had a chance to read and rest. And then we were pretty much done 4+ hours seemed to go very quickly today... Chemo was really uneventful. So far no rashes or side effects that need immediate assistance. I am quite tried so it won't be a late night. I have already had one nap and see the need for several others in the future.
I came home and dozed off on the couch and woke up to Sully getting home from another magnificent day of camp. A big thanks to N, N and J from dropping him off. He is ready for Tae Kwon Do and is kicking back and relaxing. So in another hour we will take the short walk up the street and drop him off.
While I am being reminded that I need to live in the "here and the now"or as we said in acting class so many years ago "in the moment" there are a few goals for the remainder of the week that I feel are manageable -- when we talk about healing my mind, my body and my spirit I really feel that these goals come into play:
Tomorrow attend Sully's Mom's Muffins at camp
Attend Physical Therapy session (I think it is my last one)
At 2P I will need to get to the Hospital for the neulasta injection (boosts white blood count)
Attend my weekly support group
Depending on how I fee another weSpark Class
Attend Tae Kwon Do Sully's Belt Test (going from Green to Green Stripe)
Attend our dear friend Molly's "Gotcha" Day celebration
I am so grateful to have Chemo 3 behind me and the treatment phase hopefully winding down. I feel like I am moving that much closer to beginning recovery and healing.
That's our update. As always thank your keeping us in your thoughts and prayers.
Monday, July 7, 2008
Happy Monday. It is the day before my 3rd Chemo and I have begun to take the barrage of meds that help me through the Chemo process. At the advice of my oncologist I have added a new one to the arsenal and I am hopeful it will help out a lot this week.
Last night we went to the mall and I met up with some ladies who are also plagued by Chemo Brain. Not the best photo of myself but the ladies look fabulous!For those that are saying "I don't get it" let me explain. Chemo Brain is a very real side effect where you at times can feel very hmmm let me just say from my personal experience STUPID (like you don't have your head) some other people say they feel as if they are in a fog. A cancer survivor expressed it quite eloquently when she said: "I exhibit signs of ADD and Alzheimer's." In my case I find that I do things that are pretty silly. And it is more than misplacing car keys (Chemo or not we are all guilty of that one!)
My first moment was while making dinner: I burned sweet potatoes, in addition I have forgotten how to turn the shower on, forgotten how to turn the shower off, checked every piece of mail I dropped into the mail box for stamps and still managed to send a letter without one only to have it returned... let's see what other moments of silliness have I had lately oh I like this, washing my hands and reaching for the soap and turning on the garbage disposal instead. I even managed to send a bill back to myself -- that takes talent. Oh and Mike and Sully and I have watched numerous programs lately that I have no recollection of. I insist I have not seen them and they smile and say yes we watched it together. To which I shake my head and say "really?" These moments definitely keep you on your toes and people have been genuinely kind so you really only feel like an idiot to yourself. I am getting in the habit of writing everything down in the hopes I don't miss something.
A friend called me the other day to tell me she had missed her Chemo appointment because she simply forgot which further validates that I am not alone. Thanks to my Cancer101 day planner (a gift from the Providence St. Joseph Breast Center) I am making all my appointments and if I remember to check I am usually on time or early.
We'll see if CB rears its head during my 3rd cycle. I try not to take it all too seriously unless I am cooking.
Thursday, July 3, 2008
Every situation has its ups and downs and dealing with cancer is no different.
I am happily and quite thankfully feeling very up at the moment.
Today was a beautiful day. I went to my support group. B (our magnificent facilitator) had us start off with an exercise that was part relaxation and part guided imagery. As I sat there I had time to quietly reflect on what I wanted to get out of the group today. What question did I have or feeling or thought was I processing that I wanted to share.
I thought about the word that best described how I was feeling at that moment and for the last several days. The word was Fragile.
I was feeling extremely fragile. I was able to share why I was feeling this way and was reminded that healing is an ongoing process that takes time. I really needed to hear this and absorb this today.
Being thrown head first into (Chemo induced) menopause has definitely been filled with ups and downs. The (Chemo induced) PINK EYE that I came down with earlier in the week was a surprise. I am on antibiotics to ward off any other "surprises" as Chemo 3 is right around the corner and my white count is still low. Following Chemo on Tuesday I will have a neulasta injection to boost the white count production.
I stayed at weSpark after my group for Tai Chi -- I was incredibly grateful to be able to take that time for myself for my healing. I felt so much better and could feel the funk lifting.
I don't know what emotions I will be feeling tomorrow -- I simply celebrate how I am feeling right now and that is gratefully up.
- Let us be grateful to people who make us happy:
- They are the charming gardeners who make our souls blossom.
- Marcel Proust
French novelist (1871 - 1922)
Wednesday, July 2, 2008
I received an email in direct response to the blog from a young mom in Burbank who was recently diagnosed with BC. Mike and I have had several conversations with her and her husband to share what we have learned thus far and continue to offer our support. Like us they have a young child and a family history of breast cancer. Tomorrow N will have her surgery and we will keep her, her husband J and daughter J in our thoughts as they take this journey.
Shortly before N reached out I met S at the Cancer Survivor Day that was held a few weeks ago. S went through her surgeries last week and has done amazingly well thus far. She too is part of the BC sisterhood. I enjoy her emails and look forward to connecting with her in person.
This is a difficult unpredictable journey and while the continued support of family and friends is absolutely essential to healing -- there is a connection about being able to share this process with others in a similar situation that is also vitally important.
Prior to my surgery and initial Chemo treatment I was given wonderful advice from several cancer survivors -- Those ladies and one very special gent made a tremendous impact on me. Their care and concern and the knowledge that they shared has helped and continues to help.
Now I feel it is my turn. If I am able to impart something that can help other people going through this then I feel like I have achieved something. It is my way of giving back.
Thank you for continuing to make me (and M and S) feel so blessed.