Gearing Up For Chemo #2

Chemo day number 2 finds me awake super early. Which is better than chemo day number 1 which found me awake all freaking night. So..did I get some sleep because I am better prepared for what to expect or did I get some sleep because the Decadron dose was decreased by half? Who knows. What concerns me now is that with the decreased Decadron dose my side effects this round will be worse. Different too. As the Decadron did it’s duty last time in keeping some nasty side effects at bay, but now with the dose cut in half I wonder if those nasty side effects will increase. I suppose by Thurs/Fri I will know which is the lesser of 2 evils.

I am truly trying to find my inner peace today. I do not want to do this again (and again and again and again and again) but I know it’s what I must do. I am lucky to have such wonderful support, my husband, my parents, my friends, all willing to do whatever it takes to get me thru this, willingly, unselfishly, expecting nothing but my return to health in return. Which is good, because I could never adequately repay anyone for the help they have given me and my family.

So…today I go to chemo solo. My chemo buddy is sick so she has no business being around me right now.  I had considered putting out an SOS on facebook yesterday but the truth is…chemo infusions are boring…nothing to do…very little privacy as the rooms are separated by curtains, not doors. IV’s are beeping all over the place…nurses keep coming in. I suppose tho that if I go solo I will not be allowed to close the curtain between me and the nurses’ station. I don’t want to be looked at all the time as people pass. It’s like my backyard, a fishbowl.

And I figured out a way to stop watching my hair fall out. Sunday night Alan and Michelle shaved it again. Now it is <1/8 inches long…except for the places that are completely bald due to the chemo. But at least it’s too short for me to grasp and tug! On a good note…other hair is gone too..legs, armpits. On a bad note…other hair is falling out too…eyelashes, eyebrows. Mom says it looks like I just got a good eyebrow wax…but yeah… that’s not what happened.

Mom….love my mom…she stopped by yesterday and as she left I had a “woe is me moment” and she told me “Leah, you really need to truly believe, like I do, that the cancer is 100% gone from your body and will never come back”. I love my mom.

And I do believe it is gone, really I do…I am just having, and will have for the rest of my life, a hard time believing it will never come back.

My friends, I appreciated the text/phone calls/emails/FB messages I recieved last time around, keep them coming...just don't be surprised if I don't respond. If extra prayers are needed beyond the ones already being lifted, I or Alan will let you know.

Sunday Morning Rambllings.

In two days I will head back in to the infusion center for my second round of chemo. I cannot stress enough how much I do not want to do this. The memories of the first one are still fresh in my mind, and even tho I have had a nice 2 weeks (out of 3) since the first dose, I still have some constant physical reminders of how sucky it was. Sometimes I find it hard to imagine doing this 5 more times. If you have ever done it once, then you can understand that. I am trying hard to “put on my big girl bra and get over it” but man oh man, it is not easy to do. Even the thought of swallowing that Decadron pill twice tomorrow is enough to make me cry.

I think my problem right now is that it has been a bad week in cancerland. One of my cyber friends just finished everything I am just starting. Her last Herceptin infusion was the day my chemo started. She did it all. Surgery. Reconstruction. Chemo. Rads. A full year of Herceptin. And now she finds out it mets to her brain. Oh. My. God. And a good friend just told me his sister was diagnosed with triple negative breast cancer. Oh. My. God. Again. And standing in front of Michelle’s day camp I randomly meet a woman with breast cancer who has a daughter the same age as Michelle. Oh. My. God. Again. It’s a freaking epidemic.

To make matters worse for my morale, my hair is actively falling out. Seriously. All I have to do is run my hand across my head and a bunch of tiny little hairs float down like some warped out snowflakes. Remember when I said that I would shave my head before it fell out, because I felt that emotionally I couldn’t bear it, the falling out part? Well, guess what folks…it is falling out, I only shaved it to a buzz cut so I still get to witness it falling out. Shit. This I did not want to see. And I thank the few folks who have actually seen my buzzed head, who have told me I can pull off the look, but trust me; this totally bald look is not so nice. And while I am not totally bald yet, I do have spots of total baldness and it ain’t pretty.

Someone told me the other day that even tho I wear a head scarf I don’t “look” like a cancer/chemo person because I still have eyebrows/eyelashes, and I don’t have that “grey pallor” that cancer/chemo people often have. Hmmmm…..something else to look forward to as I continue down my road to survivorhood.

Yes, I know. I know I need to keep saying that to myself. Survivorhood. Survivorhood. Survivorhood. I need to survive. I know, I know.

I really do know. But for now I will take a moment to feel sorry for myself and for the women I mentioned above. And I will get better acquainted with what my Onc’s nurse says is my new best friend: Ativan.

Sisters In Pink

Since moving into cancerland I have made a lot of new friends, some local like Melanie and Stephanie and some cyber friends, woman walking the same path as me that I have met online and been in touch with, sharing our journeys thru email, text and phone calls. Each woman is different, each treatment, each stage, each feeling is different. But what we all have in common is breast cancer. We are all sisters in pink and we all hold each other up, lift each other up. Friendships and bonds form quickly when you are wearing pink, quicker than any other friendship I have has ever formed. And I like to think that had I met these women under different circumstances, we would still be friends.

Today something happened, something I thought may happen and at times feared would happen (feared because I wasn’t sure how I would respond to it). Today someone approached me. Out of the clear blue. I was standing in front of Michelle’s day camp getting ready to bring her and her friend inside when a woman approached and asked me how I tied my head scarf on so nicely. Because she had recently had her 2^nd chemo and her hair was starting to fall out.

How she knew I had breast cancer and had no hair is beyond me. Actually, maybe she didn’t know, maybe she just liked the way my scarf was tied. Yeah, that’s possible.

I was dumbfounded by her question and while it took me only a moment to respond it felt like an eternity. My first thought was “I have no idea how to tie these things on well” and my second thought was “Here is a new sister in pink”.

We went out then for coffee and to chat. Spent about an hour together as we shared our stories, our treatments, our fears and our future plans. She has a daughter Michelle’s age and we spent a long time discussing the girls and their reactions. We discussed getting the girls together so that they could share their thoughts and get some play time in too. Both of the girls want a friend that is walking their same path too.

What an amazingly small world. I resent the way all these new friends have come into my life, but I am so thankful for each and every one of them. I look forward to many, many years of friendship with these women.

As a side note…to anyone who thought I was jumping the gun by shaving my hair last Wednesday… I have this to say to you: This past Monday, 13 days after my first chemo, what little hair I have left started to fall out at an alarmingly fast rate. You would do well to remember not to judge. It would be better if you just kept those thoughts to yourself.

Bad Head Day

Today I made my first appearance in public wearing the dreaded “Hey! Look at me! I’m the cancer lady!” head scarf….I don’t really think anyone noticed/cared/treated me different. What a relief.

It was a very odd moment I had this morning standing before my bathroom mirror trying to decide what to do with my head. In the past I would think thoughts like “Ponytail? Headband? Down? Up? Bun?". But today my thoughts were “Wig? Scarf? Hat?”. Such decisions. The wig, of course, is my first choice. It’s hair. And it looks like hair. It feels like hair. If you didn’t know me and know how my hair looked a few days ago you wouldn’t know it was a wig (at least, that’s my story and I’m sticking to it). But, the wig is hot. And itchy. And hot. Michelle wants me to wear it, of course she does. But it’s hot. And itchy. Have I mentioned that? And I think it needs bangs because it hangs over my face and if you know me, you know I don’t like that. I would always at the very least tuck my hair behind my ears. You can’t do that with a wig tho, because then it will look like a wig. And since we were heading to an outdoor event, and the wig is hot and itchy I chose not to wear it.

So how about the skull cap/baseball hat combo? By far my favorite. Easy to put on and take off and put back on again. Lightweight, manageable, not hot, not itchy. But….that really shows that I am bald…well, not quite bald yet…but you get the idea. I like to wear the skull cap around the house. Throw on the baseball cap when getting the mail, watering the plants, sitting in the back yard, etc but I don’t know yet about going out in public like that…

So that leaves the scarf (the head-huggers people have made for me are being saved for the colder days). I have about 10 to choose from now. But I still don’t know any fancy tying them on methods (that situation will be rectified on Friday tho, thanks to my good friends at jmorgan salon(.com). But whatever, I wrap one around my head and off I go. Completely afraid of how I will be perceived once out and about at a local festival…will some people I know who don’t know be there? Will some stranger come up to me and tell me she knows what I’m going thru because her mother/sister/aunt/cousin/self went thru it? Will little kids stare at me? Will Michelle be embarrassed? Will I?

No one seemed to care. One nice old lady sitting near us at the food tent gave us half her funnel cake, but I think that’s because it was huge and she was tiny, not because my head covering screamed “cancer lady!”. And one little boy did give me a weird look but then he smiled at me so I don’t think I scared him.

Let me re-phrase that…no one, other than me, seemed to care.

I care. I miss my hair. And I hate what the scarf and all the other head covering represent.

My Hair Day

Today I took control of the one thing I have a bit of control over and shaved my head. More accurately, Martino Cartier founder of www.friendsarebyyourside.com shaved my head. He made it fun too. Michelle went nuts with the colored hairspray and when she was done with that she helped him shave it off. AND I DIDN’T CRY! I wanted to, but I didn’t.

And my friend Steph tagged along too, with her daughters, and she left with a wig also. So a good day was had by all.

I will tell the rest of the story in pictures:

Side Effects

I am sure by now most of you have seen enough movies, read enough books, to have some sort of understanding about the side effects of chemo. I know I sure did educate myself as much as I could before I started chemo to have a good understanding of what to expect and I can tell you this: put away your movies, put away your books, close “Google”, you can’t understand it, unless you have done it, there is no way to understand it. Having been thru just one round of chemo, having experienced the side effects of that one round, I can tell you that I can’t explain it. I can’t explain it in a way that you could understand.

It just sucked. I could say to you “well, on day one (two, three, four) I felt…” but really, that doesn’t do it justice either. Remember I said the effects are cumulative? Well, if that is true, then it really sucks. So I am not going to bore you with the details…

I will say tho that I am lucky. Lucky to have a husband who will make me milk shakes and massage my legs any time I ask him too. (used to drive me nuts that he worked from home. I will never complain about that again). I am lucky to have parents who are willing to take Michelle to their house until I “get thru the worst of it” (I am ready for her to come home today). Lucky to have friends who send short, loving emails/texts with no expectation that I will actually respond. Lucky to have sisters in pink who can say “yes, that’s normal”.

These last few days have not been handled with much dignity or grace. Or sarcasm. They have just been handled. And now they are part of the past. I don’t feel great today, but I am better and so tomorrow and the day after that and the day after that, well, they have to be better too.

So I have to change my way of thinking right now. Yes, chemo is going to bring me down, way down. It brought me to a place I didn’t like, a place of such discomfort and wild emotions I thought for sure it would kill me. But it didn’t. And it won’t. And now I can expect that too. And know that it is temporary. And know that, come Sat. mornings after chemo, I should be feeling better.

And I need to always keep in my mind the one good side effect of chemo:

Chemo is going to save my life.

And when I look at it like that…then I know I can get thru it.

First Chemo

Going into an infusion center to get chemo infused into a port below your clavicle has a bad reputation. The infusion is all bark and no bite. The worst part was when they accessed the port, and then again when they removed the needle from the port. Even tho I had applied Lidocaine Cream it was still not comfortable. Oh…and having all that fluid running into your body does make you need to use the bathroom. A lot. They denied my request for a foley catheter.

But the morning started with a visit with Dr. Sh. I discussed with him the horrendous night I had because of the Decadron. I told him I had not taken it this morning as ordered but I did have it with me. But would he please lower the dose or something because even tho I only need to take this med for 3 days out of 21, I can’t imagine being awake for those 3 days. He kindly pointed out another side effect of the Decadron that apparently I display….a slight flushing to the skin…and there I was this AM looking in the mirror wondering when I got a sunburn! No wonder my skin feels so hot. Anyway…he did reduce my total Decadron dose for today and infused it thru my port all at once. Tomorrow tho I have to take what I took yesterday. Like I said, this isn’t your ordinary steroid, and if it helps stave off any nasty side effects then maybe, just maybe, if he will infuse one of the doses I can get thru it. He just told me to take more Ativan and throw in a few Benadryl for good measure.

So I started off with the Taxotere infused first. That took an hour. It will always take an hour. This is the chemo with the nasty hair loss, bone pain side effects. After that was infused they flushed the port and cath and hung the Carboplatin. That took 30 min. It will always take 30 min. This is the chemo with the nasty GI side effects. But boy oh boy do I have my bases covered in this department. 2 prescription anti nausea meds,  one that I am to take every 8 hours starting tomorrow morning and ending in three days. Whether I feel nauseous or not. If I can’t “go” I got meds for that, if I “go” too much, I got meds for that too. Pretty much, my bathroom is turning in to a pharmacy. Once the Carbo was done, the port and cath flushed they began to infuse my life saving medicine. The medicine I have been anxiously waiting for since Ap. 25 when I found out I was HER2+++. Herceptin. I just closed my eyes during the 90 min it took to infuse it and imagined it spreading throughout my body, killing all those nasty little HER2+++ cells. In the future tho, this med will infuse in 30 min. This is not chemo (have I mentioned that before?) and while it does have side effects they aren’t so nasty. In fact, the infusion nurse gave me two Tylenol 325mg tablets to swallow before the Herceptin was infused to ward off any “side effects”. I will get Herceptin every Tues between now and Oct 23, and every three weeks after that till next July.

And I look forward to each and every dose.

Tomorrow, and every third Wed between now and Oct 24 I will go back in for a shot of Neulasta which will help increase my good white blood cells. And also can cause some nasty bone pains. Someone once told me it was like having a migraine in each of her bones.

I was also told that the side effects were cumulative. So after each treatment the side effects will be worse than the treatments before.

And while I have been told these things, I am going to try to maintain a positive attitude and hope for the best. And I am now going to be v-e-r-y gentle with my hair.

One down, five more to go.

Restless!

Is it surprising that at 0330 on the day of my first chemo I am awake? Actually, to me it is a bit surprising as I had a long day and night. But I have a theory as to why I can’t sleep, and a culprit too. Let me tell you about my long and fun day and night.

But first I have to tell you about Stephanie. Stephanie is the local woman I met at the “what to expect when you are expecting a mastectomy” class. She was the only other woman there and her surgery was the next day. Remember? I had mentioned that a while ago. And she and I have been in touch lately. She had her first chemo on June 28, the day I “should” have started mine. She is young, like me, with children, a husband and a career.

 So today we got together and went to a Feel Good, Look Better class that is sponsored by the American Cancer Society. It was fun, in a way, weird in others. Fun to be there with Stephanie playing with makeup and making an ass out of myself by constantly asking “what it this?” and then giving away the products I knew I would never use. But I have to say, I did look pretty good when I left. But what Steph and I both wanted was some time to learn how to tie on our head scarves. Which we got about 10 minutes of, with her as the hair model so what could she see? The two hour class was basically about applying makeup but she and I agree we would have preferred some more scarf time. And I don’t think we were the only ones. And the woman who showed us was a class participant too, not the instructor. So that was the weird part. All is not lost tho! As we have rec’d a book on how to tie scarves on our heads all different ways in 1, 2, 8 easy steps. And since we will soon both be bald, we figure we can practice on each other. I have more to say about Steph too, exciting stuff, but I will save that for another time.

I left the class and headed up to see Dr. S to get the girls filled. I decided that for this fill up (my fourth, not counting the fill up he did at the time of surgery) I would not be wimpy and would fill up with 120ml of saline instead of my usual 60ml. Sorta didn’t happen, I made it to 80ml and then the pressure became too much and as I had plans for a fun night I decided to stop there so that I could have relatively pain free night. He and I also spent some time discussing rads. I was right. Doing rads will push back my change over surgery by about 6 months. Which will lead me right to the beginning of summer, 2013. I expressed my concern over another dry/kayakless/rock climbingless/repellingless summer and he said the recovery for the surgery would be about two weeks. And so for those two weeks I would need to refrain from the above activities. That’s if all heals well, and one of my current incisions didn’t heal well. I should have had a 2 week window right before chemo where I could have at least gotten wet in my folks nice clean pool, but the unhealing incision made that impossible. And if that were to happen again…grrrr……that would not be good. I have resigned myself to that fact that I will not participate in any of my usual and favorite summer time activities this year (and last summer wasn’t so great either with the elbow problem) but I absolutely refuse (at this point anyway, I reserve the right to change my mind later) to allow next summer to even be possibly ruined because of a boob job. So I asked “if you say we could do the surgery on June 6, 2013 and I say, no, let’s wait till Sept 2013 would that be ok?” And he said yes. It’s up to me. Just means a few extra months of these whacky expanders. But after a year, what’s 3 more months? Oh…and this is fun….because rads will most likely burn my skin and make it tight we have decided to “over-expand” me between now and then. Then right before rads starts he will remove some saline so my skin is nice and loose and ready to get burned. And tight. And I guess shrink. So, I think 3 more visits of 60ml each, with the last 60ml to be removed before rads. Sounds good to me. I’m gonna be sporting a killer rack for a while! I’m already bigger (rounder?) then I was before surgery. Looking good in some slinky tops, that’s for sure.

Like tonight. When Alan and I went out to our new favorite Italian place. This was our first visit and our next one is already planned for the end of the month to celebrate our 9^th anniversary. The food was divine, the atmosphere casually elegant, the prices reasonable and the staff very accommodating. It was exactly what I needed to do on the night before my first chemo. I felt good, relaxed, pretty. We had a great time sharing our meals and a bottle of vino. We came home and had a bit more vino (good-bye booze, see you in Nov) and sat outside for a while just chatting.

But when it came time to go to sleep, I couldn’t do it. Still can’t. Still typing (well, I stopped for a bit to chat with Wanda, I love having night shift friends), still awake. So here is my theory: I am not sleeping because of this new med I have to take. Decadron. This is not your ordinary steroid friends, you won’t get this for seasonal allergy relief. This is some heavy duty stuff! And the new rule is I take 4mg twice a day on the day before, the day of, and the day after chemo. Uh huh. Ummmm….but it’s keeping me up. And my apical pulse is a steady 90-96, which I’m sure is increasing my BP, which is making me shake. And pee. I took 0.5mg of Ativan at about 11:30, and a Percocet at about 1:30, some warm milk about 2:30. Watched last nights episode of the Bachelorette…man was I shocked at who she sent home…I have dozed on and off at times, but no more than 20, maybe 30 min. So…..I see Dr. Sh at 9:20 this AM and I will bring the Decadron with me and I will explain to him the situation and see what he says before I take anymore. I will also bring my Ativan and ask if I can take 2, which means the whole first chemo thing will be anti-climatic as I will then, hopefully, go to sleep. I will also bring the two anti-nausea meds they ordered me because it seems if I need one I am to take my own. Guess a co-pay for 30 of them from CVS is cheaper than how much one would cost if they gave it to me. Oh…and need to bring my Lidocaine cream so I can apply it to my port site at 9:45.

In anticipation of receiving my first round of chemo. Which starts at 10:30, and because it’s my first one, it will last approx 4.5 hrs. After this each infusion will be approx 3.5 hrs. Except the Herceptin only days, that will be approx 1.5 hrs.

This is starting to confuse me too. I’m rambling, and it’s hard with these shaky hands as I keep having to press “backspace”. Besides, one blog entry should not be this long. Maybe I will try to sleep for an hour or two.

I hear you sending me positive and healing thoughts. I love you.

Strong? Brave?

As soon as I was diagnosed with breast cancer I have been listening to people tell me how “strong” I am, how “brave” I am. And I never know what to say to that. I usually just smile and nod, say thanks and try to change the subject but in the back of my head I am thinking “is this person nuts? I am not strong. I am not brave. It’s not as if I woke up on the morning of Ap 20 and thought, ‘well this is a good day to decide to have breast cancer. I think I will now go and have a double mastectomy, followed my chemo, and then radiation, and in the midst of all that I will also subject myself to a long and sort of painful breast reconstruction process’ just because I am BRAVE and STRONG”. I just didn’t understand why someone would want to say that to me. It made no sense at all.

So finally over the last week I have shared this thought with Alan and a few friends and they have each told me the same thing. And collectively they have helped me to see that my thought process was wrong and that all those people who tell me I am strong/brave aren’t nuts. So my apologies to you.

Now I know what you meant when you said it. You meant in the way I was handling this diagnosis! Aha! Now it all makes sense. So not only do I apologize to you, I thank you too.

I am glad that when you look at me you see a woman who is handling cancer with grace and dignity. And with my usual heavy doses of snarkiness and sarcasm. I am glad you see a woman who is still concerned about you and what is happening in your life. I am glad you see a woman who is still maintaining her home  and her child (albeit I have had a lot of help with that lately).

Which leads me to this….when you would tell me that I looked “great” that would throw me for a loop too. Don’t I look the same? A little less busty maybe but still the same? Didn’t I look “great” before Ap 20? But again, through the wise words of Alan and some dear friends I now know what you mean when you say that. It goes hand in hand with the “strong” and “brave”. Because I still smile, and laugh, and wear V-necked strappy shirts while proudly displaying my port and nodes scars.

I am still “me”, sometimes it takes a little more effort that other times, but I am still “me”. And I am glad that that is who you see. I am glad you don’t see the other “me”. The one who cries at random times. The one who wants to curl up in a ball in a dark room and wait for God to intervene so that I don’t have to subject my body to any more pain. I don’t like that other “me” and I refuse to let her out, well, I do let her cry at random times, but other than that I force her to stay hidden because I just don’t have the energy to deal with her.

And I have many people to thank for helping keep the other “me” at bay. My husband, my family, my friends, the strangers who have heard about me thru mutual friends, the people who randomly read this blog, my new sisters in pink, the prayers that are lifted up in my name, the cards, the gifts, the meals. I feel a bubble of love surrounding me that was most likely always there but that I took for granted for the first 39 years of my life.

I will not take it, or you, for granted in the next 39 years. I thank you all for the love and support you have shown me. I ask that you all continue to be great over these next few months. I still need you, my family still needs you. The next phase of my journey to survivorhood is fast approaching and I am so glad I don’t have to travel down this road alone!

Radiation Oncology

So far the longest consultation I have had was today, with Radiation Oncology. And that is because Alan and I kept pressing her for more answers then she could give us. Here is what I know (or understand):

1.       Radiation will increase my chances of a progression free life by 10%

2.        They will radiate my entire right chest wall, the lymph nodes under my right arm and the lymph nodes above my collar bone on my right side.

3.       The only way they would say “no, you don’t need radiation” is if I have surgery to remove all my remaining lymph nodes and have them studied in the lab. If no cancer shows up in them they wouldn’t do radiation.

4.       My 0.35mm micromets is bigger (by how much I forgot to ask) then they would consider a micromets to be “not worrisome”.

5.       I am too young to die.

Here is my take on the above:

1.       I will take any increase I can get for a progression free life.

2.       Well, that sucks as I have these expanders and was hoping they would only radiate my under arm and not the area where the expander is. I seriously think this will push back my surgery to switch the expanders for the implants back by months and months. And I absolutely refuse to have another surgery in the summer time. I will just keep the damn expanders until next Sept. if I have too. They will have to radiate that whole area “just in case”. As a matter fact, radiation will be completely “just in case”, see #3 below.

3.       No way in hell am I going to allow them to remove all my lymph nodes and then face a possible life time of lymphademic side effects; elephant arms, compression sleeves, etc. Look at it this way; they could remove ALL my remaining lymph nodes, find no cancer, decide I don’t need rads and I have a life time of possible lymphadema problems OR they do find cancer, radiate because of it AND I still have a life time of lymphadema problems. You know my lifestyle is active; lymphadema problems would KILL me, really. Just kill me.

4.       Everything is worrisome, to me.

5.       I am too young to die.

So even tho I don’t know if rads is right for me or not, I will do it. I will throw the kitchen sink at this cancer, and then I will use that sink to wash my hands of this whole stinking mess.

Stupid cancer.

About Getting My Hair Shaved Off...

There has been a lot of talk lately about my hair in its eminent (albeit temporary) demise. Some of my more snarky friends have made a few comical suggestions; pink Mohawk, buzz cut with gangbanger designs shaved into it…..A few of my more practical minded friends have suggested that I now start to cut it short, then cut it shorter…and so on and so on until it is all cut off. The theory behind this is that I can practice with shorter styles now so that I will know what I like and what looks good once I am done chemo and my hair grows back.

All of these suggestions have merit to them. Personally, I would love a pink Mohawk, and yes, experimenting now with a shorter hair-do would be a smart move. But I am not going to do any of these things. The pink Mohawk is, in theory, quite funny and would certainly make a statement but really, it’s just not me. And cutting my hair and experimenting with shorter do’s is, in theory, a smart move and could quite possibly come in handy as I ring in 2013. But I’m not going to do that either. And here is why:

1)      Now is not the time to spend money on hair that is going to eventually fall out

2)      I do not, under any circumstances, want my hair to fall out.

And I do have a choice here folks. One of a few choices that I actually have. Yes, I am going to lose my hair. No, it does not have to fall out. I can shave it off. Or, more correctly, I can have someone else shave it off.

It is very possible that waking up one morning to a handful of hair on my pillow would be my complete emotional undoing.

Now, you know I hate/love my hair. And you know I am really not vain about it. It doesn’t define me the way it defines some other women. I’m not ‘in love’ with my hair the way some women are. But it is my hair and I have been fighting with it for 39 years, so yeah, I kinda want to keep it where it is. But I can’t. no choice here….oh sure…I could be one of the “lucky” women who don’t actually lose all their hair, it could just…you know…thin out by like…oh, I don’t know…75% or so….yeah….I’d rather be bald.

So I am getting my head shaved. On July 10 I start chemo and soon after that I will have my head shaved. Yep, before it has a chance to fall out I will shave it off. It might grow back some, sure, I know that. And then it will fall out. But at least I won’t have 12+ inches of hair falling out all at once. And I can easily shave off any regrowth at home.

To my sisters in pink that allow their hair to fall out naturally: I salute you. You are braver then me.

Lakeside!

Alan, Michelle and I were lucky enough to have spent this past weekend lakeside. I had truly thought our lakeside plans for this summer wouldn’t come to pass, but through the gracious generosity of his friends we were able to spend some time in the fresh mountain air without having to do much work ourselves.

The past few years we have rented a place on Lake Arrowhead for a week. We would pack up everything we needed to stay there, sheets, towels, food, kayaks, more food, more towels, some cooking utensils, plastic plates, more food, drinks, ice…everything a family of three would need plus enough extra to have friends and family visit one day for a BBQ. We would bring so much we would have to take both the van and the car up as it wouldn’t all fit in the van. We look forward to it, plan it meticulously and have an awesome time.

And this year we just knew it wouldn’t happen. I didn’t have the stamina for it. Nor the strength to shop for and pack up all the necessary items. Nor could I drive. Or paddle my kayak. Or submerge myself in the lake water. It was a real sad day when we decided to cancel our plans to head up there at the end of June. We briefly considered going later in the summer when I had fully recovered from surgery but then there was the chemo and the weekly Herceptin infusions. And the whole “don’t go in lake water while on chemo” and “stay out of the sun while on chemo” debacle. So in the end we decided to just skip it.

But Alan has a friend who owns a house on another lake in the Pocono’s and when he said “if there is anything we can do for you and your family….” We said “well, you have that lake house in the Pocono’s” and they very graciously invited us up for a long weekend. Their home was gorgeous, the kind of home I could live in year round. I saw multiple deer while I was there but unfortunately I missed the black bear that walked across the yard early one morning. The lake was serene, quiet, hidden and tucked away. Our hosts and their children couldn’t have been kinder, more accommodating or more understanding. The weather was perfect and I feel renewed.

Those of you who know me know I am a water person. I love lakes, rivers and pools. I like to get wet. Soaked. Head to toe. I’m not yet one of those women who say “Don’t get my hair wet”. I can play and splash as well as any 7 year old. I just love it. Hot weather, cool water. That is a perfect combination. And yet here I am this summer, post op and on my way to chemo, and I have been told to NOT GET WET. Dam. Or, as my mom says, Damn.

So on Sunday our friends suggested we go to Lake Wallenpaupak and rent a boat. We readily agreed because the only thing better than a kayak is a boat with an actual motor that you can cruise around in. But to be perfectly honest with you I was a bit terrified of going. I have had a hard time lately being jostled around while sitting in a car, so how would I feel being jostled around on a boat? Turns out, I felt great. It was just what the Doctor ordered!! The wind in my hair, the spray of the lake on my face, the sun shining, the open lake and the speed!! Man…there really isn’t much that is better than that. Yeah, I got jostled around, and at times I hurt a bit…but so what?? I was in my element.

Something happened to me during those hours on the boat Sunday afternoon. I left “cancerland” for a few hours and became a normal person again. The only thing that could have made the day better was if I could have actually jumped into the lake. But since no one did that, it really didn’t bother me too much. And there was one direction that we went where we just go sprayed. Soaked. All of us. Just smiling and laughing and heading into the wind.

That boat ride did something to me. Healed me completely post op. Before heading out I had thought “it’s a nap day for sure” but once we were done I was…I don’t know…rejuvenated? Yeah, I was sore, but not intolerably so…I wasn’t up for an adventure but I didn’t feel the need to sleep, sit yes, but not sleep. I felt…good…honestly good…not saying I felt good just so I didn’t have to say I felt bad…but truly and honestly good. And I have our hosts to thank for that. Thank you. You helped me. I appreciate your kindness more than you can imagine. Thank you.

I even drove the last 7 miles home.

Next up…lifting a gallon of milk.

One week from today my chemo starts…and I am going to do my best to have a good week, and starting the week off on a boat is the perfect way to start a week. So thank you again.