Anyway, he said he wanted to stop by because he had mentioned to his wife that he hadn't seen me clomping around in my boots, ripping up the yard, (such a lovely picture, I am such a feminine woman) and heard I "hadn't been feeling well". I replied, "I'm feeling great! I just wish I didn't have to do chemo..."
So anyway, I'm not kidding that I'm feeling great. I hauled around probably about 2 yards of mulch myself yesterday (except this time I'm not only wearing boots, hauling things, but also I have man hair, too! according to Katie); the other day I went for a walk while Emma was at soccer practice and ended up running for lots of that walk. (That's the beauty of having only one breast, and having it be entirely fake - if you aren't wearing a sports bra, it may never matter, ever again. There is absolutely no movement! So the opportunity for turning anything into a chance to go running is always there, except that I haven't done much running in the past 6 months and so am in horrible shape in that way.)
I also have taken to reminding people (well, ok, only Katie) that I don't have breast cancer anymore. She is always asking me, "Is that because you have breast cancer?" or offering me pretend cakes "because you have breast cancer". Then I tell her, "I don't have breast cancer anymore, remember? It is all gone and now I am just taking the special medicine, just to make sure." Then she said something totally adorable which I wish I remembered...she was going to give me a cake because of the chemotherapy, but she didn't know the word and called it something like "chino-ippy". I just love that girl, and hope she really is as cool about this whole thing as she seems.
So the latest is that I feel totally adjusted to my crazy short hair, whereas I was not so happy about 24 hours ago. How can a woman live her life with such dramatic transitions? I don't know! I think I am starting to see myself in a way that people have been maybe been seeing me for a long time - as an essentially positive person. Whenever anyone tells me "You are so positive! You are always smiling!" I think to myself, "That is SO not me! I'm totally negative and always frowning!" Well, I might be a bit of a contrarian, but this whole ordeal has really shown me how much I just move forward, how much I don't dwell, how much I really just want things to be good, happy, and fun.
And here's a little unrelated cute story about Nathan (the old playgroup friends might appreciate this!)...he's talking so much these days, and I'm so in love with it....yes I've mentioned that before. But today I was playing my iTunes library, and "Who Let the Dogs Out" came on, sending me back all the way to when Emma was much littler and our playgroup friends Mariah and Mikayla had a crazy stuffed animal dog that played that song...many, many times during playgroup! Anyway, the song came on, and I didn't know Nathan was even listening to it until he came up to me and said "So funny, Mom!" (Except the way he says it, it sounds like "Dough Bunny, Mom!") Apparently the song has universal appeal for 2 year olds - and this one told me why, today! I'm so proud of my little talker.
Thank you and happy pizza-eating!
*How to print it: right click on the form, and it will say "print iPaper". Click on print and it will send it to your printer.
We played "beauty shop" yesterday afternoon...I gave the girls each a pair of hair-cutting scissors and they went to town on my head! I told them that it was a once-in-a-lifetime opportunity to use scissors on someone's hair (especially their mom's) until they had kids of their own and could do whatever they want with all that hair in the house. They were excited, but afterward Emma said, "Mom, I don't think I'll be a hairdresser. We wrecked your hair!" I assured her that it is coming out anyway in a few days...and when Bill came home he used his clippers to even the whole thing out.
I was so happy that Nathan didn't even bat an eye at the whole scenario...he usually asks "Why, Mom?" for everything, and he didn't even ask it when they cut off all my hair! Katie also seemed very at ease with the whole situation...it's amazing how some little things can drive that girl nuts but then she just rolls with the bigger stuff like it is nothing! Emma is a little upset and uncomfortable, but we've talked it through (ad nauseum, almost) and I'm hoping she'll adjust.
I'm hoping I'll adjust, too! I know lots of people who have or had this haircut and it looks adorable on them, but I'm not crazy about the look for me at all. I find it mildly entertaining that I barely need to wash it at this length, that there is no styling (like I did that anyway), and I'm embracing the opportunity to see my hair like this...but once it grows past this length (it is 3/4 inch long) I won't look back! I'm glad that instead of shaving my head bald we had beauty shop day, that I have a few days to see it like this before there is nothing left....and hoping it will help the family get used to the whole thing.
Thinking about it, I've done a lot of preparation (mental and otherwise) to get rid of this hair! Look at all these steps:
- Found a wig
- Got a shorter haircut
- Had about 1 thousand conversations with the kids
- Got hats
- Got more hats
- Wore them around
- After chemo, chopped own hair again
- Started wearing baseball hat all the time
- Had beauty shop day, shorter shave
I had tried to prepare myself for a spring and summer when I wouldn't even recognize myself, but now it looks like I'll only not recognize myself because I'll be bald...but at least I'll still be able to do just about every single thing I like to do. I'm so glad - if it is less than 6 weeks before I feel cozy in my body again I'm no longer afraid of having another expander put in when it comes time to do that in the fall. And if chemo is misery for a few days but for the other days I can do whatever I want, then I think I can handle that also. SO this year won't be a totally bad year - I will just have more hard days than usual but they aren't even the majority of the days. It seems much more possible when you know you aren't giving up everything - just maybe 25 more bad days and a head of hair.
Regarding the hair, maybe our family should go camping this summer. With this stringy blond hair of mine, I always want a shower so it doesn't feel greasy...but this summer I won't have any hair so I'll not have that to worry about. I should call Bill and tell him to schedule all the back-country camping trips he wants for this summer, fall, and next spring before my stringy hair is back!
I'm such a happy and active participant in my daily life, it is crazy. I cried when I got to pick up Emma from school the other day! I was so happy to be normal! (A lovely person who is also going through breast cancer and chemo summed it up in an email to me earlier today - it is just so hard to feel like you can' t even take care of your own family.) I'm totally in love with every minute of Nathan, and it is hard not to be in love, because he is finally talking all of the time and even singing in the car along to his Thomas the Train DVD! And I'm terribly indulgent of Katie wearing high heeled shoes and pink robes (and whatever she wants) as she plays outside - like she is an old-fashioned movie star waiting off-set to be filmed.
Speaking of movie stars of old, I have been thinking of them and the scarves they'd wear on their heads, the way they had their hair covered, etc. I've got a few scarves and caps to copy them, now! I also saw a picture of a retro swim cap that looks like you have a host of blue flowers on your head. Maybe being bald will be a very glamorous look, if I accessorize well. Glamorous will be a new look for me, too, but thanks to my Aunt Donna's wonderful friend Sally (and my Uncle Kevin who drove the gift over today) I have a great pink baseball hat which I love, too.
So there is nothing exciting to report, except that I love my family, I love my life in this crazy nature preserve I have here (I defy anyone to look at everything I planted last year which is now coming up, and see all these crazy animals and tell me I didn't really go to town in creating a nature preserve), and even if I am losing my hair in days I am still going to try to be so in love with everything as I am right now.
(About the only thing that would make me happier would be if I could have a giant farm like this one which I read about in Hour Magazine: http://www.sashafarm.org ... but my suburban nature preserve will do for now. We live much closer to the necessities of life here - Costco, Westborn Market, Trader Joe's and Target - very important. I do hope all the people at Westborn will be just as nice to me next week when I am bald...)
Second of all, I am really thinking about the mind-body connection today. I know I had all of those side effects, but I am wondering if it was despair that was really bringing me down. That first treatment was probably the first time I felt like I really did have cancer, I think. I know that for all purposes I most likely don't have any little cancer cell in me since the surgery, but going to chemo and feeling everything made it seem more real than checking into a hospital and having parts taken away. After all, I've done that to have children before! I think part of the misery was coming to terms with the fact that I had cancer, and why me, even if it is two months after the fact.
I have to also mention that I do find myself to be exceedingly stupid sometimes (I may have mentioned this). I almost always have to actually make a mistake before I learn from something. When I first started driving I think I had almost every type of car accident before I learned all the different ways there are of being careful. Yes, most people are more highly evolved and don't learn almost exclusively from experience, like me! So, despite all the good advice, I did go into chemo without every single little thing put in order, and then I went through everything I did as I always do - just try to get through it, blindly, and hope I'll have a chance to try better next time. Now you can see why I made a list after the fact!
So, now we have two reasons why it might have not gone so well (aside from the fact that I was being poisoned as much as was possible) - despair and improper preparation. I'm preparing, but also I had a long talk with myself this morning. I told myself that yes, I did have cancer, dumb ass! Yes, it is supposed to be hard! (and here is an important part) Yes, it is ok if I'm not an A+ chemo patient, going through with flying colors and no problems and begging for more! (I went through it crying and wishing it wasn't me...not very graceful.) So I had a talk and told myself that I can and am choosing to think what I do. I can count the days until this is all over (over 5% until I'm all done), or I can work harder to find happiness each day. I'm hoping I'll do more of the latter than of the former!
- Nausea (have drugs)...also, ginger ale, ginger tea, Healing Touch, maybe acupuncture? Walking helped once it was more under control and not as omnipresent.
- Chest/mastectomy pain (felt like swelling) ??? What was that? Should I use Motrin (plastic surgeon recommends) or Tylenol (oncologist/nurse recommends for bone pain)?
- Bone pain (have Tylenol)...walking either helped or made me forget the pain
- Depression...should I start anti-depressants and what kind?
- Throbbing Headache (see Tylenol/Motrin discussion, and keep noise down on bad days)
- Hot flashes - can deal
- Constipation (got laxative)
- Indigestion - eat smaller amounts more frequently
Other things to remember - drink even more fluids, eat yogurt (don't know why, it's just a tip).
Also, I should have activities planned for the family so that the kids aren't around as much when I am feeling badly (something fun). It really bothers Emma to see me in any sort of discomfort, but if she is busy she doesn't notice as much. It was great to have Julie, Tyler and Natalie for a diversion...
First of all, how could it be that I've made a life where I am constantly needing to do something more? In my normal life, even a walk had several layers of agenda to it - I should be exercising myself, the dog and/or my kids, I should go places where I could look at pretty gardens or houses to get ideas for more work I could do on my own, and I should be supplementing the amount of Vitamin D I receive via sunshine. How different a walk for just a walk was yesterday!
Secondly, how crazy was I to feel that walking down my street was boring and I had seen everything on it! Yesterday I probably found 10 things I had not seen before on any run, walk, or drive down my street. I actually saw birds sing - could tell that robin was making that sound, that cardinal was making that sound.
Third, was I ever going to realize that Dagny (my dog) was 11 years old and slowing down? She had a great time sniffing things as long as she liked. Then I thought of my children...just the other day as I emerged from a side effect fog I looked at Katie and felt like she had grown about a year in the past month! Would I have kept going on and moving forward forever until I totally missed all of these moments?
So last night, when I returned, I sat with Katie and read her extra stories about pirates. And later, when she was supposed to be asleep already and asked, "Another book?" with her little smile as if she was trying but already knew the answer (no), I said, "Yes, another book". And today Nathan and I sat for a long time at the table and had snacks - I left the dishes in the sink and did not wash the floor or make another phone call. Perhaps there is something good about the chemo slowing me down, after all...I may just come out of this a gentler, more present person.
I am so thankful for my sisters! Julie, Tyler and Natalie came in on Friday, and I was feeling too badly to even see them after their cross-country flight from San Francisco, which tells me how bad it all was. Normally nothing would keep me from seeing them, first thing. They were here through all the badness of Saturday and Sunday, bringing sunshine and smiles to all three of my children...and were here all day yesterday as well. Thanks to my dear sister Amy as well for listening to me as I just sobbed on the phone! Now that I am feeling a little better J, T, and N will take a little trip to Evanston to visit A, C, and M - the cousins will meet for the first time!
I am also so thankful for all of the rides for the Lucken children, and for the dinners. You have no idea how nice it is to have something good to feed your family when you are either too nauseous or tired to prepare food yourself!
If things go the same next time (as they normally would), at least I know it is only about 3 really bad days and 2 days of in-and-out badness. I have also scheduled some healing touch therapy for the day following chemo, and am going to look into acupuncture as well. Overall, though, I am so thankful and relieved that the misery doesn't go on forever! I think I can even handle doing it again, just knowing that the misery is finite. (Good thing, as I have 5 rounds to go!)
I have even more respect for all of the people who have gone through this before me, because I am so not coping as well as I am sure they must have coped. I'm terrified of the next treatment, and then the 4 after that. Before, I was at least interested in what was going to happen as if I could observe from a distance; now, I'm having a harder time separating myself from what I am going through. I'm not at all interested in any of it, anymore. I feel like going to bed for the next 118 days and waking up when it is all over.
I remember, just a week ago, feeling sort of upbeat about things and wondering why there were t-shirts with slogans like "f*** cancer". Well, now I really know why there is anger embedded in those slogans. This treatment is horrible.
The only bright light I can see in any of this is my beautiful family...but I can't understand why this has to happen to all of them!
Just a quick update, for my own records:
- Thursday started to feel pretty queasy, and became exhausted and went to bed early.
- Friday, woke up better but still queasy (no vomiting due to good anti-nausea drugs), took a good nap and felt passably well...went to bed early, had more pain at night. The Neulasta injection (to help with white blood cells) burned and took a long time to inject, but it wasn't so bad as I thought.
- Saturday - not a fun day! My chest hurts and I woke up sure my infection was coming on the left (non-cancer side), went to the plastic surgeon who said it looks ok. It still feels bad, like it did before my infection went out of control, but I'm just going to hope it is ok. Supposedly chemo can make things hurt again, though. I'm sore, still don't feel like eating, did a lot of sleeping and watching tv (more sleeping). I'm cranky and feeling sorry for myself.
I have another very heartfelt thank you for all those who signed up for activities over the next week at the Lotsa Helping Hands website. You are all making the life of my family so much more easy, and enjoyable for the kids...you have no idea what a difference it makes!
Lastly, my sister Amy and little adorable baby nephew Matthew are on their way back home tomorrow (they've been staying at my parents' house so I said goodbye tonight). Emma is bereft, and I also have that empty feeling I get when either of my sisters starts that journey home. I can't even believe that she came, watched all of my children with her 7 week old baby, and so effectively took my mind off of what was going to happen today...except for when we talked about it. She is a nurse who administers chemotherapy to children, so professionally she is also a very well-equipped support person. Thank you, Amy! I love you so much, and hope I'll be able to help you as much someday (just not in this same situation, of course)!
From what I've heard what happens after this round of chemo will probably be very similar to what happens following the 5 subsequent rounds...so it should be useful and fun to keep track! Putting the IV into my port was not cozy at all, but who would think jamming a large needle into one's chest would be cozy? Luckily it worked for both the infusion AND my blood draw, so that was my only poke of the day. AND the woman who did my blood draw and IV hookup was a person who ADORES Nancy McIntyre (and Nancy likes her a lot, too), so through the whole thing we were just discussing how wonderful Nancy is and pretty soon the poke was done! (Nancy, you are her favorite patient!)
Then I saw my rock star oncologist, and he was lovely, as usual, with lots of information and plenty of jokes. He prescribed my infusion and also all of my anti-nausea drugs, and then I went to my seat and got cozy for the next 3 hours or so. Almost the whole first hour was taken up with the infusion of my anti-nausea medications, and I have some pills to take for the next two days. I didn't have any side effects during the infusion at all (as long as I didn't worry about the feel of the needle), except it did get a little chilly. Bill went to fill my prescriptions and brought back lunch (yum) and my stepmother Nancy came along to keep me company.
The minute I sat down the woman next to me started talking to me - she knew it was my first chemo and she was reassuring me that my hair would come back (I wasn't worried, but it was nice to see her beautiful hair - since she is much older it came back the most beautiful silvery gray and is very short and stunning). She and her friend were adorable and very sweet. After that, I only got through 2 People magazines before it was over! I was chatting with Nancy and a sad 82-year old woman, too, though, and Bill kept handing me sheets with information to read as well. SO MUCH FOR MY FUN TEST BOOKLET! I have the receipt for it, of course.
Afterwards, I felt like I couldn't quite get my thoughts out or I would forget what I was about to say a little...a fellow breast cancer survivor I ran into later in the day said it perfectly - "Do you feel a little spacey?" YES! Of course I had already had some conversations with other moms/friends at Beverly so hopefully they don't fault me for whatever I said that was inappropriate or dumb! But other than that and a feeling like I don't want to eat so much (of course I did, because I am an excellent eater), and just a little tiredness, I'm fine today. We stopped by the bake sale and book fair at Beverly today and picked up Emma (thank you Angela for bringing Emma! She had a great time!), went to Whole Foods and Trader Joe's for juicing/boosting immunity supplies, and came home to a delicious dinner by Laura Curran. We visited with Amy and Matthew and recounted the day, our neighbors stopped by which is always fun...and now I am going to bed.
So that is a good recap...don't feel like you have to read it but if I really am going to be spacey it will be good for me to read and compare next time!
- I'm feeling good again! except for the burning in my chest which is apparently just my nerves coming back...and the port which annoys me constantly. My mileage on the treadmill came back up, just in time for it to plummet again (which is ok, I know).
- I've had awesome quality time with the kids - especially Nathan who seems like he has suddenly learned how to say everything during this recovery month. The girls' conferences went well, they are clean, happy, and settled again...just in time for more upheaval!
- I ate enough cheesecake in the last week (residual from the 1st communion party) to make up for all the weight I lost during the infection week...not that I needed to do that but an enormous amounts of cheesecake is always comforting.
- We had a delicious and thrilling picnic dinner outside tonight from Qdoba - our family favorite. Katie suggested we always eat picnic dinners outside on Wednesdays, unless it is very cold, and I thought to myself that it might be a very fun tradition for the night before chemo.
- I've got activities for tomorrow! I have magazines, and I bought (will you guess this - probably not!) a GRE test booklet for fun! Yes, I love to waste money, apparently, but I also love to take standardized tests! Doing challenging work during chemo *may* help protect against "chemo brain"...but even if it doesn't I think it will be a fun way to spend time. Maybe next session I should study for the GMAT, and then the following session, the LSAT, and then after that I'll spend a few sessions on the MCAT. I'll come out of chemo very refreshed, academically!
- Bill is putting together my rebounder...good for the immune system which is about to be obliterated.
- I got my juice recipes together, finally, and we'll pick up ingredients tomorrow. (Nancy, I never emailed you back - we have The Juicing Bible, and something else, but I am trying The Juicing Bible right now...as previously mentioned, I was specializing in cheesecake over this past week so not into juicing for health as I should have been!)
- My garden is coming up! I've been weeding, which is another love of mine. Even if I am not feeling well enough to garden over the next week or so, I'll have little presents coming up everyday.
- I've saved up lots of Jane Austen movies on Masterpiece Theater (favorites) and all of this week's Dancing with the Stars.
- My sister Amy has been here to keep my mind off of chemo coming, and when she leaves my sister Julie (and brother-in-law Tyler, and darling niece Natalie) will be coming in to take my mind off of feeling badly from chemo!!!!!!!
I feel a little like that with the hair, though we'll see how things go when everything comes out. I'm glad I bought the wig, because I know I'll be glad to be closer to fitting in on some occasions. BUT, looking at myself in the wig I feel like I could look good, but that's not really me. I would never have hair that thick and fancy! I see myself with the bandanas and hats and recognize myself more, somehow.
I was worried to go to the appointment yesterday - nervous I would hear something I didn't want to hear but ready to ask every question I had. I left feeling like Dr. Dekhne had passed along some of her strong female characteristics to me, and sad that I won't see her again for almost a year. (I will be watched by my oncologist now over the next 5 months, and then see him again 3 months after chemo...I see Dr. Dekhne 3 months after that 3 month check up.) It probably helped that she kept telling me, "You had a Stage 1 breast cancer. The chance that it would return is very low."
She also gave me advice about some other upcoming things. Regarding plastic surgery, she suggested I wait longer than the plastic surgeon suggests before trying again with an expander - more like 6-8 weeks post-chemo so that I have enough time for my immune system to bounce back. That would give me a better chance of fighting infection. She also said something that totally turned the whole failed-expander situation around - since I don't have an expander in my right side, I can use that side however I want! I don't know why I didn't think of that, but it is totally great for this spring and summer - I can play more with Nathan, even use that arm to pick him up, etc. Regarding my oophorectomy (ovary removal) she gave me the name of a surgeon, told me to meet with my own GYN, told me to have it done laparscopically, and explained why I wouldn't want to have a hysterectomy.
I also went to Susan's Special Needs yesterday...and I take everything back about Susan (typical). She was not crying this time, and she was the perfect person to help me yesterday. She showed me prosthetic breasts that were incredible - I've never looked so good in a bra before! I'll get one for the summer after I've been expanded more on my left side. I also picked up some things for when my hair comes out, and made my appointment to get my head shaved and my wig cut.
My children all went to my aunt's house where they had a great time! My darling sister Amy and darling nephew Matthew went over, too, to help with the onslaught that is the Lucken children and just to spend time. After Amy and Matthew left, I kept finding Emma walking around forlornly saying, "I miss Aunt Amy and Matthew! It is just so lonely here without them!" I kept mentioning that she normally she lives with just the 5 of us and all thousand of our pets, but it didn't help. She is in love and was bereft without them.
It is the most wonderful thing to see my children with all of my family members - I just can never get enough of seeing the family bonds grow and develop!!!!!! My children are so comfortable with the whole family that they don't hold back with anything - Nathan was jumping all over Uncle Jim, Emma can sass and joke with my Dad or my uncles and Katie can perform in all of her fanciness the same as they do when we are all at home by ourselves. Sometimes I wish they had more restraint and were more polite, but I also love seeing them be so at ease with my beloved family members - like they know they are really loved. What more can you ask for your children?
You can see more pictures of our day if you click on our family slideshow (to the right, in the links).
Here is more information...
Cans for A Cure
The Beverly Student Council along with the Beverly 3-Day Walk Team will be collecting returnable bottles/cans in the Multi-Purpose Room. Please stop by!
Bake Sale for Breast Cancer
Before or after your conferences, please stop by the Girl Scouts (Troop 3751 and 6698) bake sale in the main lobby. All proceeds to benefit the Beverly 3-Day Walk Team.
Child Care for A Cause
While attending conferences with one of your children, please drop your other children off in the Beverly Multi-Purpose Room for fun and games with qualified babysitters.
A donation to the 3-Day Team requested.
***We are also still looking for volunteers to help with child care and the bottles and cans - adults and teens. If you are available, please contact Kathy with your availability - firstname.lastname@example.org.*** (I'm sad I can't help on Thursday as I will be having my first chemo treatment...)
(Beverly Elementary is located on Beverly Road, which is halfway between 13 and 14 mile roads, and is west of Southfield Road.)
I'm also back to feeling better, emotionally...I guess I should not retract all the sentiments of fear I was experiencing earlier, but I am back to feeling more positively. There is really so much to enjoy and experience, and so many examples of people who have gone through breast cancer beautifully and went on to live wonderful lives. To be perfectly honest, I have to credit some of my turn of heart to Dancing with the Stars (so silly of me)...but those people are leaping around that stage and putting silly little moves in and it just touched me that there is so much fun to have, so many fun things to do with one's body. And how weird is it that the last two musical guests (last week and this week) were both breast cancer survivors - Kylie Minogue and Sheryl Crow? It was nice to be able to show these beautiful women to the girls and say, "She had breast cancer, and look at how amazing she is now!" - especially Kylie because she also went through chemo and lost all her hair...my next frontier.
As you can see, she is no beauty. She was even less beautiful when I first saw her (one of her finest attributes is her luxurious fluffiness, but due to illness she was decidedly un-fluffy). It was early February, 1996...I was living in Chicago and spending my Saturdays volunteering at the Anti-Cruelty Society. I loved volunteering there, even though it could be heartbreaking work - some days I was the volunteer who walked the animals to the room where they would be euthanized. I spent their last minutes with them before they were dispatched to another world due to something as simple as a cold (upper respiratory infections spread through an animal shelter quickly, are difficult to resolve with such a large number of animals, and sick animals are unadoptable). I liked to think that the extra affection I spent on them in their last minutes made a difference, but I don't really know. It made a difference to me, though - those were formative moments in my view of life and death.
This Saturday, I was working in the clinic, force-feeding animals who weren't feeling well enough to eat on their own. I was engaged in the task, but not engaged enough to be able to ignore the frisky and very vocal feline across the room - she was extremely vociferous! I stopped to visit her, upon which she promptly rolled on her back and started writhing around with happiness. I was moved by the intense display of affection, though I didn't know then that this is her signature move - she does it with everyone, all day long, no matter the circumstance (dog chasing her? kid pulling her tail?). When I asked about her, I heard that she had come in with her litter of kittens and had been adopted, but was subsequently returned once she developed an upper respiratory infection (now you see why animals with colds are unadoptable...new owners don't want a sick pet). Amazingly, the veterinarian decided she was too good to euthanize and found room for her in quarantine! Annie was set up in a cage, and there she was that day. Also amazingly, no one else had spoken for her.
I already had a cat, and a very small one-bedroom apartment which I shared with the most wonderful and kind roommate in the world...what business did I have fostering this cat and bringing her into this terribly small apartment? But I was crazed and had lost my mind over this cat. Soon, she was mine for keeps.
Bill and I named her Annie, for his favorite author, Ayn Rand...though she now goes only by nicknames, like Nan, Nanners, or Nannie (Nathan thinks the word for cat is Nannie). She was irrepressible from the beginning. I was told to keep her away from my other cat for two weeks so the cats could acclimate to the idea of each other. In less than 1/2 hour she burst out of the bedroom, ran straight up to my other cat, and sniffed her. Madeline hissed and ran away, but Annie was undaunted, had decided she liked Madeline and they were friends shortly thereafter.
This cat has lived in 7 different places. She's been around for the birth of 3 children. She's met countless other animals that I've watched or adopted over the years. I ran over her tail with my rowing machine one day, and she came right back to me and purred. Katie slammed the door on her tail, and amputated a good inch of it, and when I found the cat, she purred at me. She's been chased and petted and carried around by the friends of my children for years now, and she still purrs at me and writhes on the ground. She is still irrepressibly herself!
So anyway, though it sounds crazy, I am hoping I will get through this year like this cat would. She just never even notices if there is a problem - not when she was sick at the Anti-Cruelty Society, not right after she was spayed, not right after her tail was cut off and bleeding, not after people chase her and pull on her hair and crush her with hugs and kisses. I imagine she was this way when she was found on the streets of Chicago, that she was this way right after she had those kittens. She is just how she is, and you could probably amputate anything from her and she would still be that way. She is just as crazy and vocal and writhing as she ever was, and though she is now over 13 years old she's never been different for a day in her life.
Now, of course people may say that Annie is just a cat. She can't read about how she might die on the internet. Her worrying faculties might be less developed than mine might be...but, I may also have some faculties that she may not which could outweigh the fact that I can read and worry. I can direct my thinking away from the negative information if I choose. So Annie is "just" a cat, but here is another important fact: I have known lots of cats. I've seen them react in different circumstances. The fact that Annie does not freak out, that she is herself, DOES make her special, and that is precisely my point.
It's been hard to stay positive or to feel like myself when I can't do everything I can normally do, but I've got a great role model in my crazy cat. Who cares if parts of me are amputated? I didn't need them anyway! And who cares if I'm no beauty? Hopefully my sparkling personality (ha) will prove to be my best selling point. (And I hope not too many people read this post, because I am outing myself as even crazier than I normally will admit to being.)
I feel a little uncomfortable or out of my element because I am and always have been so UN-fancy, and un-girly. Yes, I like the looks of me with hair as much as anyone would, but my hair is certainly no work of art that I spend hours looking at each day. Before this short haircut I was walking around with wet, just-out-of-the-shower hair every morning for most of my life (after 8th grade, that is...I've never managed to achieve the level of fanciness I aspired to in 8th grade, and going to an all-girls' school where I never felt pressure to be beautiful was wonderful for me). If I looked at myself in the mirror after waking up it was to throw my hair into some sort of conglomeration that looked more like a nest than anything. So I have little in common with most women in the world who spend lots of time and money to look their very best and to assure that their hair complies with their desires. I'm sure I'll mourn the loss of my hair, but maybe mostly because I won't be able to pass for normal anymore, or be invisible. People will see me and know I am going through chemo.
I also am so unattached to my chest I think it is scary. I am upset about the expander because I won't match all spring and summer, and I think it will be gross to be sweating against a yucky turkey cutlet/prosthesis, and I don't want to have to bother. Other than that, I really, really think I could just take out this other one and be fine. My plastic surgeon mentioned something about how it will be good to keep getting filled because I'll see progress and see how good I will look, and I was thinking, "Huh? Do you see me coming in here with my sweatpants and my stretch mark belly and my hair which is barely done and think I'm all that interested in having ONE gorgeous breast?" Bill is even fascinated with the fact that I can choose my size, and I am thinking I'd like to be totally flat. ("It is such a clean, sporty look," I think to myself as he envisions pretty, nicer breasts than I started out with.)
There are makeup tips for going through chemo (apparently it helps to wear more than just clumpy mascara if you want to mask the fact that you feel like total garbage). Some of these writers have marched into chemo in their fabulous suits and Manolo Blahnik heels, and marched right out and to work with their kick-ass wigs on. That is so not me - I have lived in sweatpants for so much of my life that I don't even think I owned a pair of JEANS for much of high school! I was wracking my brain trying to think of what I wore when I went out with boyfriends and I was stumped. I moved to Boston to row with a competitive team after college and I didn't even have any clothes to interview for jobs with...any kind of job! It was all rowing clothes and casual clothes for me.
So I can't think of anything inspirational I would add to someone going through this stuff for the first time if I were writing a book- I have no tips on how to remain gorgeous and vibrant and fancy and fashionable as I was never those things in the first place! I'm curious to see if I'll have any tips of my own that will be different.
So far I've only taught myself that I can comfort a 2.5 year old without picking him up just as well as I could have by scooping him up as I did in the past. I've learned that if you can't put a child into his car seat you can put a stool into the car for him to step up himself! I've learned that if I am tired, I can rest without sending my little one away by watching Dora with him, playing Webkinz (he's a maniac for Cash Cow, one of the games where a cow drives a car away...he is a slave driver making me play it again and again), reading books, walking around our yard, and just talking. So see, no beauty tips, yet!
So on to the fear - the infection really has made me more nervous about everything to do with cancer and the recovery process. It opened up all the possibilities of things that can go wrong from here on out. There are so many opportunities for infection in the upcoming months, and after my most recent experience I am terrified...but there are obviously other, more dramatic and serious things that could go wrong as well. I've been pretty optimistic that I have a best-case scenario, but sometimes I feel around that best-case scenario and realize how close that scenario lies to sad endings.
The floodgates of fear that opened when the infection came led me to venture into the land of reading about cancer - also I know I have chemo coming up so I needed to read a little to be prepared. So NOW I am encountering all of those stories of death and metastasis that I had avoided thus far. Lovely! But I am growing through this and needed to see these stories sometime if I am going to evolve into a stronger, braver person.
Add to that the fact that I received my BRCA results last Thursday, and did test positive for a mutation on my BRCA-1 gene. I suppose it is something to know WHY I developed a breast cancer at 34...but now I also have the fear that other family members carry this mutation, and the fear that I'm going to develop a tumor in my ovaries. I was not looking forward to having my ovaries removed, but every day since I found out about the mutation, I am more and more ready to have that surgery. I think I'll go in tomorrow! Ha ha - it will wait until after chemo, of course. I'm also horribly worried for my sisters to take the genetic tests, as well...and my daughters! (It is not even suggested until my daughters are over 18, and the counselor suggested closer to 24 years old.)
As an aside, for those who might not be familiar, here is a brief explanation of the BRCA mutation: the BRCA genes monitor and protect against tumor development in the breasts, and also the ovaries. If a person has a mutation in that gene, it means that you have the possibility that a tumor will develop and go on unchecked by normal cell processes that stop tumor growth.
Today I got my drain (now my 3rd drain) out...I hope everything will go well. I also had my first fill on the left side, which was basically like getting a needle inserted into your skin, and now tightness. Basically I wonder if my chest will ever feel the same because something is always uncomfortable or not quite right! (I'm sure it will someday.) The plastic surgeon re-assured me that I did nothing to cause the infection that led to my expander needing to come out, and hopes that my second try at an expander will go well (after chemo). Of course I am afraid it won't, but I'm afraid of everything these days, as I have mentioned!
This leads me to the point of this rambling, fear-filled post...I am coming to the realization that I can deal with this, but it is going to take much braver living than I have ever lived before. It was easy to say I could live and enjoy life when I was purposefully living in the face of my diagnosis BUT avoiding the most scary scenarios that might come. Now I realize I'm going to be living and enjoying life in the face of all of these horrifying, scary scenarios. I'm getting there, but I would not be telling the truth if I said I was there already!
I've been really sad over the past week - the infection scared me way more than the cancer even did, because it happened so quickly and was such a surprise. I really thought that I had things under control, and suddenly I SO did not...suddenly I was not looking at everything getting better but everything spiraling down, and fast. I also really, really felt that I failed, and no one is harder on myself than me if I think I've done something wrong. Now, I probably did not do anything wrong - I was so careful and followed all the instructions that I received without fail, but the fact that I could get an infection where others do not get an infection seemed like a failing to me, like I must have done something to make it happen. And then, I might as well have gotten out the whip and started lashing my own back, I was so mad at myself. I am coming to terms with the fact that these things just happen - maybe that side was just open so long during surgery (I did have the 3 nodes out, the tumor wasn't teeny, the fascia had to come out, and then I had to get sewn back up) that I got something then. In any case, I'm trying my hardest to only look forward. But then I get mad that looking forward means another surgery to get the expander put back in! And more recovery! And more lying around! And I might go insane!
Luckily, I had some good thoughts at the start of this and I need to just double back to them. I had thought I would have to develop other talents and hobbies during this year, but then I was feeling so great I was excited if I wouldn't have to develop them. I had thought I would watch more TV. Plenty of people watch Regis and Kelly, Good Morning America, Oprah, Martha Stewart, and whatever is on from 12:30- 2:00am and it doesn't cause an identity crisis. It has just been a lot for me to watch ALL of those shows, FOR THE FIRST TIME EVER, this past week. Oh, and the View, where the hosts were asking the question, " What would you do if you couldn't watch TV for 3 months?" and were all flabbergasted...and I was trying to count up the number of times I've gone 3 months without watching TV in my lifetime and LOST COUNT.
What do you do if you no longer recognize yourself in the person you have become? I suppose you try to find yourself in new things, if you are smart like that. I personally have been spending too much time during the past week mourning all the things I can't be doing instead of doing things I can do and just haven't ever done before, and enjoying them. I had promised myself to try to be good and enjoy those new things, but I also think it is all well and good to make those promises when you are feeling healthy and great!, and another to fulfill those promises when your body is failing you, you can't move without something hurting, and you are afraid.
So, it is time to try a little bit harder to rein my thoughts back in and to enjoy life even when things aren't great. I don't appreciate people telling me to think positively, but I know I should be doing that. Here are some extra little ideas I learned in this week for myself for the next bad time - which I am sure is just around the corner -
- Instead of saying I can't absolutely do the things I really enjoy, maybe I can just do them to smaller extents. For example, I may not be able dig out and create a bunch of new gardens this year, but there are little gardening tasks that I can do - all the little picking and sorting and plucking and journaling doesn't take much muscle. Before this week, I thought I would rather just not engage at all in some things until I could do them the way I wanted to do them, but now I think I will just take what I can get.
- I have to remember that there are so many worse things to have and people deal with them so much better than I have dealt with this disease this week. I am lucky that I was genetically programmed to get this disease and not something worse. Here is a disease that can be cut out of some organs I no longer need, and has a very real possibility of going away...and a disease that is not unheard of. It might be harder to be brave if I felt like there was no plan, no good survivor stories to hear, and I had to plot my own path.
- Lastly, adjustment is a good word...it implies pushing forward, pulling back, and finally getting to the new position and settling in. Sometimes it is easy to forget the pulling back part, or to resist against it, but it is all part of the process. I'm still adjusting to my diagnosis...maybe since I pulled back a little last week I am making progress.
- I'm thinking of a pumpkin seed I started this January, which is currently growing in my kitchen. The plant is not in it's optimal growing situation - a pot in a kitchen is nothing like full sun, good garden soil and nature - but that plant is just stretching itself further to get to the sun. I need to stretch just a little bit further, too.
Pam had surgery this morning around 8:30 that lasted for 30 minutes. The site was infected and the tissue expander/ temporary implant was removed during surgery. She is home now and resting (feeling better that the pressure and pain from the infection is gone). The surgical pain is less than the infection pain.
The expander can be put back in a few months (even potentially during chemo). This is not the optimal route but one that is often taken. For instance, UM's protocol is to do the reconstruction after the mastectomy (not during). So, this is a setback physically and emotionally. But, this is not a cancer issue which is the the positive news on which to focus. It also means that there is one less thing to worry about during chemo (no need to fill the expander now until they are both in place). There is always a worry about filling the expanders during chemo as again this is an infection risk.
This is also a reminder that during the next months we should be especially vigilant on optimizing Pam's recovery during chemo. This is also a time for lowered immunity. The urge to do too much when you feel better is hard to suppress. Plus Pam never sits down normally! (As I said, if this was me, I would be laying in bed helpless for weeks - typical lazy male response to any problem).
In terms of the different scenarios throughout this whole cancer process, it is the "best of the bad luck" options. We just pray that the infection is stopped and contained and we don't need to be managing this further.
The surgeon believes that the chemo can still start on time as well.
So, if it is not too much to ask, I could use some prayers that they don't find me riddled with infection tomorrow, and some prayers that everything will be easily cleaned up, put back together, and I will heal better this time.
We are blessed to have such great parents, siblings, aunts and uncles. Sybil took Nathan today to David's office (where he had to change a poopy diaper!), Nancy came over and Katie was able to rest at home, Angela got right on the helping hands website, my sisters have been so kind and reassuring, my Dad stopped by after work, my Aunt Perry brought more flowers, and Bill spoke with Aunt Donna on the phone. Tonight the kids are at Grandma Sybil's for a sleepover - an event which has been rare in the past, because their dumb parents never want to give them up for an evening! But you will see that they all look comfortable and happy (and cousin Shane is feeling peaceful):
Pam was doing great, feeling great, starting to be a little more active and then a setback. There is a complication with the healing process in the reconstruction on her right side which emerged on Tuesday. Pam also had some flu virus/ aches, chills, etc. at the same time, so she has not been feeling so well the last few days.
The problem may be just additional fluid that is not draining properly or fluid and plus an infection. The result of this is more antibiotics and another surgery tomorrow morning (Friday). This ~30 minute surgery will clean up any problems and re-set the reconstruction process. I told Pam this is a mulligan in the golf world. A do-over that we hope is a short-term setback.
I don't mean to downplay this setback - Pam is in more pain now than after surgery (probably 80% physical and 20% emotional). She was hoping the next hurdle was the first chemo in 2 weeks, not another surgery. Plus, things had been going so well. Lots of positive news, feeling better, etc. The combination of the pain plus the disappointment. She should be able to come home the same afternoon and start the recovery again.
Good news: This setback is a risk of immediate breast reconstruction and is not related to any cancer issues.
Thanks so much to everyone. All of the kind words, notes, rides, meals, and prayers. A few more prayers would be appreciated.
Just for a little diversion in your day, I'm putting it here...if you do read this, see note below...
I was so displeased to read a recent article featured in Metro Parent, "Moms get a lift: nipping and tucking the signs of childbirth". I do strongly feel, as mentioned in the article, that "In our society, there is a lot of pressure for women to look good." I do NOT believe that women need to respond to that pressure; in fact, I feel that it is our duty as mothers to go against society, to change society, and to prove ourselves as role models to our young children. Women are NOT their bodies, women should not be judged based on their bodies, and it is wrong to hold the contempory "ideal" female body as a goal in one's mind. That ideal is often very far from the natural body that a woman was born with or could ever naturally aspire to have - even the women who have those bodies may not be maintaining them in a natural way.
I find Missy Daniels' bathing suit concerns to be nearly ridiculous, though I can understand them, to an extent. One month ago, at age 34, I was diagnosed with breast cancer. I was at home, recovering from my double mastectomy, when I encountered the article. I did elect to have immediate reconstruction (as was suggested to me), but I am not expecting to come away from this experience with impressive breasts. My first goal is that I can see my 3 very young children grow up, and then after that, my goal is to be able to lead as full a life with them as is possible. I had the reconstruction so that I might be able to go swimming on a moment's notice without fumbling around for a prosthesis to fill out a bathing suit, and with the hope that one day I can wear a mother-of-the-bride dress at their weddings. I can understand Missy Daniels' concern with looking normal - I feel that too, now more than ever as I am about to lose all of my hair due to chemotherapy - but it is what this "normal" is that bothers me. Normal, for a mother of five, should not be the same normal that it might be for a 20 year old woman who has never been pregnant. It is expected that pregnancy should have an effect on our bodies. I don't even discredit Mrs. Daniels for having breast enhancement surgery, if that is what she needed to have to make herself feel better. I do blame Metro Parent for showcasing this "nip and tuck" of "the signs of childbirth", for buying into society's views on the perfect female body. Metro Parent is not relieving the pressure that women feel to have perfect bodies, it is adding to the pressure by printing this article.
Please, do not forget that there are women with such far greater concerns than how their bodies look (not even perform - because Missy Daniels' body has performed beautifully in bringing 5 children into the world, quite a bodily feat). Young women, each day, are diagnosed with life threatening diseases, disfiguring illnesses, and they manage to handle it better and more gracefully than those who fret about some saggy, small breasts. I can only hope that I might do the same.
Metro Parent is such a unique publication, and often showcases the better part of humanity and the human spirit. It encourages us to do well by our children, to inspire them, and to lead them to adulthood with care and grace. I feel sorry that this article found its way into this magazine, and into the hands of so many women who are really wishing to do a good job of mothering. This is NOT how we should mother. We should look higher and try better, as Metro Parent often urges parents to do.
*This is the note below: I firmly believe that there is nothing wrong with a woman's choice to enhance or augment her body in whatever way she sees fit. I just really felt it was inappropriate to discuss this in a parenting magazine, and took offense with the little headline on the cover also: "Mummy Tucks - Cosmetic Surgery to erase the signs of motherhood". I think it is fine to discuss cosmetic surgery with friends, I think it is fine to do - but I think that underneath all of this, women should be trying to be bigger than their appearances (I've always felt that way, too). I think people should look upon the life-giving experience of childbirth with happiness and not regret that it changes our bodies...and I think aging should be honorable. It would be an honor to be given life long enough that there is a chance to age.