Delightful evening

Saturday evening Arthur and I were invited to a wonderful friend's daughter's wedding (yes, we're getting that old - and in light of things I should add, thankfully!) Anyway, I was concerned as the weeks drew nearer that the timing may not be good due to having had chemo on the Monday of the week of the wedding, but all went well. (Everytime I say this, I get a jolt of nerves due to the fact that I am scared to jinx myself, although I should just give the irrational superstitions a rest!)

Anyway, in addition to being nervous about the effects of chemo on the wedding day, I was also very concerned about what I was going to wear. As I have written, and hopefully expressed, I am very self-conscious about being bald. I feel very anxious and stressed about it most of the time - expect, maybe when I am at home. You know how I feel about the wig situation, so I have just been wearing bandanas every day. Obviously that wouldn't do at a wedding! Luckily, while Arthur and I were at the dr. last week, I found a cute little knit hat. I may have written about this already.

Anyway, I got dressed, put on make-up ("too much" in the words of Skylar), and put on my hat. I was not a happy girl when I 1st looked in the mirror - which I typically avoid at all cost. So I was a little weiner-ish on the way to the wedding. Trying to keep it together, but on the verge of tears. Arrived at the beautiful setting for the wedding and all my friends were so nice to me, "oh you look great" etc, etc. I truly had a very difficult time accepting these sweet, and I feel, heartfelt comments. I just can't believe I feel so emotional about this baldness business!!!! My whole life I have tried to live as if it was the inner beauty that mattered the most. Hair, make-up, clothes, plastic surgery, etc. didn't matter. Have I been a hypocrite all my life???? What lessons am I unknowingly teaching the girls?? This is all very concerning for me and one that I will need to continue to ponder.

But as the evening wore on, as I listened to the beautiful wedding ceremony - and cried and held Arthur's hand - then was a part of a lovely cocktail hour, then a truly amazing reception, dinner, toasts, dancing, flowers, cake, good company of wonderful friends, I started to feel better. And finally, on my last trip to the bathroom, on the way out, I was actually able to look in the mirror and think maybe I didn't look so bad. It was not a thought full of confidence, but it was a thought that crossed my mind, and although it is sad, it also made me a little happy.

(Afterword: - as soon as I got in the car, I ripped that little crocheted hat off because my bald, fat, beginning to be grey head was sweating!!)

much peace,

m

Friday afternoon

Home from work and a little down.

I really love working - it's amazing how much work takes my mind off things. I am thankful that I'm able to keep working, and I'm hoping I will be able to continue along this path. The busyness at work really keeps me focused. And I feel so productive. I know how to feel busy and stay busy which is the blessing of work. At home there is not quite as much to do. That might make some balk, and I know there are so many things to do at home, but home is where I should be relaxing and sleeping, and resting - and it is soooo much more difficult than one would think. My doll house has seen some work, and I've picked up reading again - Freedom by Jonathan Franzen, and my new quilt has motivated me to pick up the girls' quilts again. (I'll explain that in another post for those that don't know about the quilts I'm making for the girls). But mostly I feel like I should be up doing all the normal home and family things. But the resting needs to take priority.

Skylar and Emma each have two friends spending the night, so it's fun to hear them all down stairs. It's so much easier as they get older - with regards to having friends over to our house! Lots of junk food and they should be good to go!

peace,

m

Wig shop & chemo

1st let me tell you about the wig shop. Arthur and I went to the nice wig shop to which we had been recommended. It was fine - it had the synthetic machine sewn, synthetic hand sewn, and the real hair wigs. These ranged in price from $325 to $1200. I tried on 2 of the hand stitched synthetic wigs ($399 - which insurance would reimburse - I have a prescription :) ) Anyway, they looked more real than I was expecting. My fear has always been that I didn't want to look like a poor cancer patient with a bad wig. I guess I never really knew there were good wigs because you don't know they are wigs! Now, all that in mind, as depressed as I am about my baldness, the wigs did not make me feel one tiny bit better! Reality is, everyone who knows me, knows I'm bald, and those that don't why would I care?? To quote myself from college (remember, Sharin?) "I don't have to impress jack shit!" So there you have it - no wig form me. At a completely different place, I found a cute little hat to wear to a wedding this weekend, as my bandanas just won't do! So I feel really good about that!

Next Chemo was yesterday. Port accessed at 9:45 ish, labs drawn, chemo - only for 1 1/2hours. Arthur and Chris both came to keep me company. Then we went to lunch and back up to see Dr. Shah. My echocardiagram that I had a couple weeks ago was just to get a baseline. All looks fine. The drug I am on - adrymicin - can cause heart problems immediately and/or can cause congenital heart problems down the road. But....those things happened much more frequently in the past, the drug has been tweaked and the doses have been much better adjusted, so I'm OK with it all.

Finally, today I went to have my Neulasta shot - the one that increases white blood cell production. It was a little more painful than the last time, but I made it through. I'm feeling better about the management of it this time, too, so I should be good to go.

That's all for now, except I'n still reeling in my new quilt! I've carried it everywhere for the last 2 days, hospital, school, home to bed, back to school, to the hospital, back to my room! I LOVE IT!!

peace & love,

m

My Quilt!

Thursday

Thursday went very well. I was expanded - which means Dr. Lee's nurse, Hallie, injected a huge syringe full of saline in each "breast." If I haven't explained it before, I will now - the expanders I have in each "breast" are the large pancake shaped things (but thicker) made of something like plastic - but not. Anyway, each expander has an access point made of metal. To expand me, they use this little tool with a magnet on it to find where the access point is - once they find it, they press down and it makes a little x, so they insert the needle into the middle of the x. And, since there is no feeling in my breasts, it doesn't even hurt.

Hallie thinks I am about as full as I need to be based on the amount of tummy fat (aka flab) I have. I will see Dr. Lee the 1st week of Dec. Some of you may know I was wanting to do the reconstruction surgery during Thanksgiving break, then recover through the 1st weeks of Dec and winter break. But...I have come to terms with the fact that this is not to be. I'm not even done with chemo until Nov. 29, and I probably should give my body some time to heal and recover. So it looks like - if all goes well - I will have reconstruction surgery the 1st week of June, then have the summer to recover. This week Hallie will be looking for June dates for me. Originally I wanted everything done and over with in 2010, but the reality is that doctors, tests, keeping an eye out for cancer will all continue to be a part of my life for the next few years. I am beginning to accept that. I can actually sit here and think about it and type it and not be depressed about it - that's a good thing and that's progress!

After my appt. I waited around the hospital (ate dinner, read, etc ) for the breast cancer support group that night. It went fine. There were only 4 of us there plus the counselor who led the group, but it was good. I was able to verbalize the fact that - and I know this is sad - I don't like to look in the mirror, I don't even like to walk past one. It makes me sad. Being bald has been so much harder than I ever thought it would be. I feel like I look like a Holocaust survivor. That may be in poor taste to compare, but that's what I see when I look in the mirror. ( I know I should see GI Jane - but that is not where I am at about my hair yet!!) Not to mention that my head is not smooth and it does not have baby fuzz! It is prickly!! The final insult is that it all looks grey and silver. And thinking about it all coming back grey thrusts me into a dilemma of principles: do I let my hair take its natural course and embrace what life has presented to me ? OR do I color it as soon as possible since I'm only 43? This is just me thinking aloud - please don't feel like you have to weigh in on the matter. I still have quite a while anyway to ponder it.

So tonight is Sunday and I just got back from dinner with a group of my friends. We are all moms and have been going out to dinner together for about 10 years now! When we talk about going out, we call it Mom's Night Out (MNO). This group of wonderful women presented me with the most beautiful quilt. I'm going to try to add a photo here in a minute. It is simply beautiful!! Each woman designed, cut, pieced, and pressed a square. Each square has a specific meaning to us as a group and to me personally. The quilt was finished and quilted by one of the women's (Sarah) mom - who is an expert quilter. I can only attempt to express my gratitude, appreciation, and love to this amazing group of women - Sarah, Lindsey, Kristine, Dianne, Serie, Carolyn, Jeanette, Liz, Kyle, Chris, and Rhissa. THANK YOU. I am truly touched by this amazing gesture! And, by the way, I LOVE THE QUILT!!

Tomorrow is chemo # 3 and all should go well. Arthur will be coming with me and Chris may meet us there. I plan on going back to work afterward. As I mentioned in an earlier post, I should feel fine tomorrow and Tuesday, then it will be down hill from there until early next week. But I have all my meds set and ready to go, so I'll be fine!

I'll let you know how it goes tomorrow!

Much love and peace to you all,

m

Feeling good

I may be getting the hang of this chemo regime. I am feeling just great, and I did over the weekend, too. My only issue are the couple of sores left in my mouth. Things taste a little strange, but overall it was much worse a last week. I am anticipating a good rest of the week. Keep your fingers crossed. Then, my next treatment will be next Monday. Based on last time, I hope to feel OK on Monday and Tuesday, then, I am guessing, the rest of the week will be down hill through that weekend, then, hopefully I feel an upswing again.

I went to see the social worker at the hospital tonight and I had some big "a-ha moments" and it felt great. It is amazing how much I learned in 50 minutes! I guess all my years of counseling have paid off. :) I was very encouraged by what she told me about the girls. After I shared with her what was going on with them (how they were doing in school - great, how they were sleeping - normal, how they are when it comes to chores - a pain, how they react to me - the same as before my diagnosis) she said they sounded like regular pre-teens with hormones starting to show themselves, and that I shouldn't be too worried about the cancer and its effects on them. That was a load off my mind and heart. She also gave me a really cool journal with guided questions, and it was written by a survivor. I'm excited to get started in it.

Thursday of this week I have an appt. with Dr. Lee to get expanded, and then that night I am going to my 1st breast cancer support group at the hospital. I'll let you all know how it goes.

Finally I want to thank you all for all your kinds thoughts, guestures, prayers and good energy!! I really do feel it.
love and peace,
m

Another good day

I slept great again last night. And again I woke up to fresh air and blue skies! It was fantastic! But...Skylar came in this morning saying her tummy hurt. I didn't press her for the particulars, instead I just told her to get in bed and we'd stay home. Honestly, I think she just needed a mental health day even though I'm not sure this 12 yr. old can express that. She and I have not been getting along so well since Sunday, so I think we both needed to reconnect and have some stress free time together. And that's exactly what kind of day we had. We had a fantastic morning, no TV, we looked at books, cuddled (a little), played a game, talked. Just had a great time!!

Then Rhissa and Chris showed up (un-beknowest to me - but pre-arranged with Arthur, although he didn't know we were home) to straighten up the house, provide us dinner, bringing lots of fresh fruit, which is easy for me to eat, and beautiful fresh flowers! What a wonderful surprise! I love my friends!!

As for me physically, I'm doing great. I'm off most to the chemo-time meds, just down to my few regulars. My mouth doesn't taste too bad. Overall, a wonderful day - and it was much needed!!

peace and love to you all,

m

A better day

OK, everyone stop worrying - I'm fine. I think, judging by the phone calls, that I freaked everyone out by my last post.

I had a really good day today. I woke up to my curtains open and fresh air blowing around my room. That was a treat! We have had the windows open for 2 days now, and hopefully we can keep them open for the rest of the week. The weather has been perfect at night! I love it!
Oh and I slept very well last night!! Those 2 things combined made for a great day!

Once I get home from work, I all of a sudden feel exhausted, but I guess that's just fine. I'll take it.

Please don't worry. I KNOW I'm going to be fine.
peace & love,
m

I had no idea...

I was thinking back to this summer when I was all gung ho and positive. I thought the depression I felt then was the worst it could get. I thought I could kick chemotherapy's ass! I was convinced that I was invincible. I thought losing my breasts and my hair were no big deal compared with staying alive.

I had no idea what I was talking about!!!! My friends who have survived breast cancer were so kindly supportive during the summer months. Yes, they told me it was hard, but I had no idea! I guess it's like being pregnant or giving birth, until you do it, you have no idea. My depression is pretty overwhelming. That combined with the tiredness is almost too much. And I know it's going to get worse. I have 3 more treatments left, and I am so ready to be past all this. All the side effects of all, I I mean all, the drugs I am taking are crazy. Maybe alone, each would be manageable, but together, well it's just hard. And losing my hair has been so much more difficult than I thought. It's hard to look in the mirror. Now my breasts being gone, as I have mentioned before, does not feel like a big deal to me right now, but I'm guessing when I am recovering from the next surgery, I'll be pretty bitter.

I know there are positives - the best of which is I am going to be fine! This does have a finite end, I'll have a flat tummy, we'll have all learned something, yadda, yadda, yadda

love,

m

An update

Holy cow, I just re-read my last post, I made a million errors!!

Anyway, Thursday went well - Rhissa met me at the Dr. Lee's office and for my Neulasta shot.

The shot went great!!!!!! I was able to rub some of the prescription cream (emula) on to the site where I was getting the shot, and what a miracle that was!! I had already teared up in anticipation (which made Rhissa none too happy =) ) and then next thing you know it was done!!

Then I head over to Dr. Lee and get the good news that my infection is getting better!! Yippee! No expansion, but I just need to finish the antibiotics and he'll expand me next Thursday. The expansion (s) aren't that incredibly important since the skin is well saved, but he just wants me to get to the size I want to be before surgery - which who knows when that'll be. I'm beginning to wrap my brain around it maybe being next summer. I met a parent at school who has had the same surgery I will have but it was performed by Lee's partner, Dr. Klein. She is very happy with it.

As for some of the chemo/Neulasta side effects this week - luckily, no "bone pain" so far!! I've taken a couple of advil (which I'm not supposed to be taking on a regular basis unless I'm in major pain or want to prevent it) here and there as preventative, but all in all it has been great! Keep your fingers crossed! But let me tell you, the nasty taste in my mouth is, well, I'm over it!! It's like the worst bad breath you ever had times 10! It's not metallic, it's just gross! So for the last 4 days, I've been trying to eat to get rid of the taste, which sucks, because I'm not really that hungry and very little is appealing to me and my tummy right now. I'm not nauseous, I am just really food sensitive right now - like when I was pregnant (which I AM NOT), I couldn't look at or think about certain foods. It's weird. As for my bald head, I'm not real happy about that either - it feels prickly and pokey, not soft and fuzzy like baby hair!! And, how's this for strange, the back of my head and neck get so hot at night, I actually sweat to the point where my pillow is damp!! I can't sleep on my belly (the "boobs" hurt), and my sides are only so-so comfortable. But on the up side, I think I have shaved my legs for the last time for a long while! It's been 5 days and still smooth as a baby's butt! And, in that same vein, I may have had my last period, ever. Maybe. I need to ask Dr. Shah, but I'm guessing since the cancer was estrogen positive that the chemo may be starting to put me into menopause already. I was thinking all that wouldn't happen until she put me on tamoxifin (sp?) after all the treatment, but who knows??

AS for my emotional/mental health right now - it could be better. Work has been a saving grace - really, my link to my sanity right now. The weekends are hard because I don't have much to distract me from my own mind. Then there is the wanting to do things but getting tired. Arthur had to go out of town this weekend and I can't believe what a hard time I have had being here alone with the girls, the house, the dogs, etc. I was a mess earlier tonight!! I'm used to being very independent, and I feel so the opposite of that right now. I used to love the chance to have a weekend with the girls and me alone, but now, everything is different. Let's hope I can get back to the old me when all of this is done! Does it really happen, the old me will come back?

Speaking of done, I guess that has been my biggest mental challenge (I know there is room for many comments here) this week, is already getting frustrated and wanting all this to be DONE!!!!! But, I know, I know, patience patience!

I have an echocardiogram scheduled for today to check my heart. This won't be a big deal, I just hope my heart is in good shape!! I will try to think positive while I try to fall asleep.

As you can tell from the last couple of entries, I'm pretty down. I know I shouldn't apologize to you out there for that, but I can't help myself - I am sorry you've only been reading negative lately. I am truly having a hard time rallying a positive attitude. I know a positive outlook will help me, etc, etc, But from there, I get sucked into this crazy cycle of "I need to be positive, I'm not positive, oh no I'm not going to get better because I don't have a positive attitude, I need to be positive, ..." Maybe I should join a group, huh?? Not sure why I haven't done it yet.

much love and peace,

m