This all started when I found a lump on my left breast on January 14, 2007. I am not one to do regular self exams. I happened to find it when I was rinsing off in the shower. I am like every woman I know, we all mean to do exams but don't. We know how, but our breasts are so dense, cystic, whatever, that we don't know what to feel for. It all fees lumpy. I always wondered, how would I know if it was cancer? It felt just like all the other lumpy breast tissue. the only difference was that this lump was higher than most of my breast tissue. I knew I would have to have it checked out. I took comfort in the fact that in May I had my first mammogram, which came back clear. I was too young, pre-menopausal, no family history, I reasoned. None of that meant a thing over the next 6 weeks. This log begins as a series of emails I sent to friends and family to keep me off the phone and them informed. It worked. I added some notes I was taking for myself. I hope that my experience will enlighten you as well.
Before all of this I was struggling for clarity…
Chronology, notes….
Initial Appointment with Dr. O, January 30th, to check on a lump I found around the second week of January. Living in the town I do is a wonderful thing. The trail system throughout the county makes it possible to ride my bike anywhere I need to go and do errands. So when I had to go to the Dr. on a prematurely beautiful spring day, I hooked up the Burley Trailer, attached Maizy to her pole and took off downtown. When I was in a store she was napping in the trailer. She LOVES to run and was so much fun to do errands with. People at stop lights would smile at me, tell me she was such a lucky dog. I felt like the lucky one.
After all my errands were complete I headed over to Dr. O’s office. I settled Maizy in the trailer with her water and blanket, locked my bike and headed up the stairs to her office, quite the picture of health, I thought to myself. During the course of the examination she found a second lump in the same breast and sent me to get a mammogram and ultrasound. I really thought it was just going to be another cyst, like I have all over my right side, and I felt a little like a hypochondriac going to see Dr. O. I even used some self deprecating remarks to that effect. She assured me that it was nothing to take lightly and that we should always check these suspicions out.
February 13th, Ultrasound and mammogram.
I had the most extensive mammogram ever! After being squeezed into every position imaginable and getting a serious cramp in my left arm, they sent me over to another room for an ultrasound. But before I leave the mammography tech says the radiologist may request another view after the ultrasound. I asked her if I was sent back for more mammogram pix if that meant that I was doomed. She looked at me kind of horrified but chuckled and said “no”. That is exactly what happened and I was sent for another mammogram after the ultrasound. I told her it was a good thing I asked her that question previously, otherwise I would be concerned. Turns out I should have been.
During my ultrasound nothing looked like anything to me…not even cysts. The techs disappeared and said they’d be back after showing the films to the radiologist. They were gone a long time. I had a thought while lying on the table in that darkened room that it wouldn’t be a good sign if the radiologist came back to talk to me. Unfortunately, about the same time, I heard the two female techs coming back down the hallway, talking with a male voice…I knew this was a bad sign. His exact words were “I can’t tell what this is, so I want you to call your doctor when you leave here.” My cell phone rang less than 30 minutes later. She got a hold of me before I had a chance to call her. Their efficiency made me nervous. This was one of those times when if my doctor could have waited until the next day to call me I would have been thrilled. She referred me to Dr. G, the surgeon. Dr. G was out of town and couldn’t see me until Feb. 27th. More waiting….little did I know that this was going to be the theme of the next month.
Core Biopsy February 27th.
I had no idea what a stroke of luck it would be to have volunteered to pick up my films in the hospital after my appointment with Dr. G. I was tracked down in the diagnostic imaging department and told that they could take me that afternoon for my biopsy. I said great! Even though Adam was not there…which didn’t make a difference to me, except that Donna in Dr. G’s office thought I needed him for emotional support. Dr. G recommended having a core biopsy. I asked why not take out the lumps? She explained that removing the lumps was considered surgery and she didn’t want to put me thought that twice if it turns out that this is “bad news, because I think that one of these is going to be bad news”. I was stunned. How could a doctor say that when they don’t have all the information? How unethical! However, she was the professional, and wouldn’t make such an outrageous statement without some degree of certainty and she was more than qualified to be able to make such a statement based on her experience. That realization made me shudder. Walking over to the hospital with my films under my arm I called Adam and cried for the first time. How dare she say something so callous like that…how horrifying it could be true was more like it. Rain unexpectedly began to fall, hard. I had only my leather jacket on. That would do nothing to protect the huge manila folder containing my films. What if some drops of rain got on the films. Would that look like cancer to the radiologist? What was I to do? I had to walk a couple of blocks yet. I felt like the biggest looser and there was nothing I could do to change any of it.
At the biopsy it was all straight faces and talking about our kids. Then at the end, the tech started mentioning that if I needed anything or had any questions or concerns that I should feel free to call the breast center. She went on to tell me how wonderful the nurses are and what a great center it is. I was struck by her comments, because wasn’t she jumping the gun? We had only just taken a biopsy…could she see what it was on the screen? I thought the pictures weren’t clear, hence the biopsy…what did she know that others didn’t? Or was Dr. G trying to soften the blow? I tested the waters by telling this tech that Dr. G had said she expected at least one of the lumps to be bad news. The tech’s reaction…a grimace on her face and a nod of agreement. I guess I should have known then…but I still grabbed hold of my denial and thought they were each being rather unprofessional.
Diagnosed February 28th , 1:13pm.
I didn’t think it could be the results already. I was prepared for after 5pm, or even the next morning. I answered the phone
Me: Hello
Dr. G: Is this Rachelle
Me. Yes
Dr. G: Are you driving? (I knew I was in trouble now)
Me: No
Dr. G. We got the results back and it is cancer. Can you come in tomorrow so we can talk about what is next?
Me: Sure
Dr. G. Bring your husband (then you know it is bad!) and a tape recorder because you are not going to remember half of what we talk about.
March 1st. Dr. G's visit is on my Ipod.
Was I now somehow different? I didn’t feel like it. I had to start acting like it. Such as making zillions of appointments, showing no fear in front of my kids, continue to make dinner each night. Could I still ride my bike with Mia’s brand new Trailer bike attached? Would it be irresponsible of me to rollerblade all around? Did I even know what my feelings were? I had no space in my life to answer that. Thank you Tracy for taking away my guilt for wanting my kids to stop talking for just a little bit so that I could hear my own thoughts. I am not even sure I had any yet.
I was told to get informed, buy this book, “call my friend who just went through this”. I wanted to look at all these loving well meaning friends as if they were crazy. I even tried to read a book by an old classmate from high school who also went through breast cancer. How could I get past the first chapter of her book when I was just starting to live out my own experience? Then I asked, how do I get informed? But the real question was what do I get informed about? They didn’t know what kind of cancer I had, they didn’t know exactly where it was, they didn’t know the size or how long it had been there….so what exactly was it that I should look into, all of these “what ifs”? I am not a what if kind of person. I like to deal in facts. I tell this to Hani all the time. “Mommy, what if they don’t have red glitter paint at the store tomorrow, what will we do? “ “I don’t know, I tell her. I don’t do what if’s. Let’s wait until we know what we are dealing with and then we will work it out.” I wanted to do the same thing here. I mean, why read Dr. Love’s Breast Book latest version, when there were so many chapters that my not apply to me. I would rather bake triple chocolate cookies with the girls instead. That to me made was more sense if you were looking for a way to feel better. At that moment I didn’t need to be in control of breast cancer. I couldn’t anyway. Triple chocolate chip cookies made much more sense to me in feeding what our souls needed most in that moment. I could forget about being a patient and continue to be a mother. I needed to stave off that transformations as long as possible and this was the most fun way to do it.
I knew I needed to start telling people but had no idea how. I actually apologized to everyone after dropping the bomb as I would call it because I was truly sorry for how they felt about me having cancer. “I am so sorry to have to tell you this” is what I would say, which now seems so strange since I was the one with the disease. I slowed down telling people because couldn’t stand the tears or pity I was getting more and more often. I wasn’t crying or feeling sorry for myself, so the last thing I wanted to do was take care of other people’s feeling about what I was going through. I knew I needed my strength for other things to come.
I have always admired those who cut their hair for “Locks of Love”. I remember watching Anne Curry on the today show grow hers out in support of one of her relatives. They talked about it on the show for about a year. I however was too selfish with my hair. It had always drawn such attention. Thick, curly, brown, dramatic. It was a double edged sword for me. I sometimes liked the attention and sometimes wanted to just have regular hair. It was hot in the summer and took all day to dry. I spent almost 6 years flat ironing it and it looked great straight and was so much easier to manage, that is unless part of if got accidentally wet and then I was the half frizz, half straight girl, which was just ridiculous!. I got engaged while I was still straitening my hair and one day I let it dry naturally. My husband, with a look of confusion on his face, asked, “What did you do to your hair?” “Nothing”, I replied, “this IS my hair”. Poor guy, he thought he married a woman with straight hair.
So, here is another thing about this experience that is really bothering me. Each time I call some office to make an appointment they ask about what insurance I have. I have one of those big companies, PPO, the whole deal. I get right through to whomever I need to speak with or get an appointment to see. What happens to everyone else? If you have an HMO, you must stay within their campus….however, what if you don’t have any insurance? I sure hope there are wonderful doctors like mine who have large hearts that work at County. Otherwise I many have to get over this ordeal myself and go find out what they need because without the resources so easily at my own fingertips I would be in much worse shape. No one should have anything less than everything they need when it come to their health. Money being the least of the barriers we should have to face.
Isn’t it ironic that I was just starting the process of looking into what it would take to get into the field of oncology as a nurse/care manager. Wondering how I would start to make contacts to get prepared educationally and then get a job. Well, I am getting all the information I need now. And believe me, when I am well, I am going to turn around and say, “OK, now I want to work here!!”
March 4,
Hi All
Sorry for the impersonal email...this is the only way I can keep up with all of my current responsibilities and keep you up to date. I know how it feels to be left in the dark without information, as I just went through this last year with my cousin. I certainly don't mean to ignore any of your calls and warm wishes. I have been going through a lot of testing these last few days, meeting new doctors, and scheduling more tests for the week to come. I don't expect to have a lot of time to get on the phone, especially since I won't talk about this in front of the girls, and by the time they are in bed at night, I am ready to go to bed too.
Sorry to those of you who have no idea what I am talking about. This past Wednesday, after weeks of tests and waiting, I found out that I have breast cancer. It is only on my left side, yet I am having an MRI this week to see if it is also on the Right. So far, the PET scan and ultrasounds have been clear. No other cancer has been detected in any other part of my body. Phew!
I am going to find out this Thursday when my surgery will be. I met my Oncologist on Friday and he seems great. I have a meeting with the Nurse Practitioner in his office on Tuesday to learn all about the chemotherapy schedule, which I will have to undergo every other week for four months. Yes I will loose my hair, be tired, etc. But otherwise I expect to live a normal life. I even found out that the IV access port will be subcutaneous, which is very important since we spend the summer in the pool up here. I can't really say I will miss having my hair in this heat...I just can't imagine not having any hair...anywhere. However, that means a free pass from shaving for the summer...not bad!
The surgery will have to be a mastectomy since there are two tumors and, as we all know, I am very minimally endowed. On the bright side, I will get my B cups back, which I haven't had since nursing my darling daughters. I also get a tummy tuck out of the deal, as that is what they use to create my new B cups. I can't complain about such a consolation prize!
I still have a few hurdles to get over, like the MRI this week and hearing if the cancer is bilateral, and after the surgery finding out if I have one large tumor or two small ones (we are rooting for two small ones, as there is a better outcome if there is not one large tumor. )
I will start chemo about three weeks after my surgery, which will most likely be done sometime the week of March 12th. I won't know for sure until I see the reconstruction surgeon this Thursday.
So, that is all I know so far. THANK YOU ALL for all of your thoughts and kind words.
By the way. I had my hair cut off yesterday in San Francisco. I figure it will be easier to have short hair while I am in the hospital and in bed at home post-mastectomy. I have about 6 weeks until it all falls out anyway, so what the heck. I have been advised to buzz cut the rest off after my first chemo treatment, as the slow loss of hair is supposedly physically and emotionally disturbing and messy. I guess I will take the dog clippers and pull a Brittany Spears (sans the tattoos). I'll be sure to send photos as they become available! They say I can't work anymore in Hani's classroom at school, as it is a germ magnet and not a good place for a chemo patient to be. I thought of asking if I could still do it if I wore a mask, but then I thought that having a bald masked lady helping in a first grade classroom might be more frightening than helpful for the poor kids.
March 9
There was a lot to digest from last week. I met with the Nurse Practitioner in the (can't quite say "my" yet) oncologist office and went over the chemo regimen. After avoiding all kinds of chemical additives my entire life, it seems to have been all for naught after getting this list of drugs I will be tangoing with all summer.
I learned on Thursday on my date with the Reconstruction Surgeon (a fancy way of saying Plastic Surgeon so that medical insurance will cover the procedure) that my breasts will be replaced by "breast mounds" and that all the other little things that I will be loosing will become "optical illusions" or "surgical incisions". Nice.
I have to admit, with all of this information and the seemingly long wait for this whole event to begin, my sunny disposition has begun to set. I am trying to distract myself anyway I can...without dipping into the new prescriptions I now have for any off label purposes.
On a better note...I am getting used to my new haircut, finally.
Thank you to all of you for helping me make life as simple as possible right now. I do so appreciate the playdates for the girls so I can take care of pre-op appointments and all of the efforts being coordinated to help get them to school, classes, summer plans, and just help take care of my family in general over the next several months. You have no idea what wonderful medicine this has already been.
We have a date....March 28th
(My writing)
I have cancer…nope, it didn’t help. I thought that if I could write it, it would feel real. God knows that I have said it enough times in the past two weeks and it still hasn’t sunk in. I know something is up though, because slowly my world is very different. Mia needs new spring jammies and I haven’t gotten them yet. And all of the appointments I make are for me. That positive, humorous attitude I relayed all this horror to everyone with is now completely gone. I am so detached from my state of mind that I rely on the mangled scraps of paper I have been finding in my jacket pockets to reveal to me my angst. So do the frantic doodles in the margins of the notebook paper I use to write down the reports of my state of health.
When I first got my diagnosis I felt certain that this wasn’t going to change me, that perhaps I would be a more spiritual, centered person after all was said and done, but in my day to day existence while going through this trial I would remain the same person I always have been. I felt certain that, just by looking at me, you would never know anything was different. Now, at t-8 days until surgery, I am certain that this will never be true.
After spending about 20 minutes on the web yesterday, researching what T, N, M, means (a formula to assist in the staging process), I calculated my possible stage using what little information I have and found that in the best case scenario I am Stage 2A. This sunk me deeper into disbelief. I immediately saw the 5 year survival rate for this stage was 92%, not 100% as for Stage 0 or Stage 1. Noticing the time, I rounded up the girls for gymnastics and headed out the door and into the car. To help snap me back into reality, I quickly surmised that the 5 year survival rate for the average 41 year old driver is probably around 70%. That helped me regain some perspective.
After discovering the drama with Dr. S, the oncologist (thanks to a well placed friend) and completely loosing faith in my ability to know what is best, I have been on a rollercoaster. Dr. O was my saint last week in providing me with the reassurance I needed that I would find a new doctor and with plenty of time. I met my new oncologist, Dr. R, last Friday. He seemed nice enough, smart enough…but so did the other guy. The one with such a warm and wonderful persona that Adam and I called him “The Rabbi”. Boy do I feel let down by that experience. So, now I am skeptical of everyone. I checked them all out with the medical licensing boards, of course. My rosy glasses are smudged and I walk around feeling skeptical about the whole process. Vulnerable is more like it. I REALLY liked my surgeon, and trusted her. That is until it was confirmed that she did know about Dr. S’s revoked privileges at the hospital, (since 2005!), when she referred me to him. Why would she do that? Trust factor down several notches for that one. Then, Dr. R mentions that my tumors are 98% hormone receptive and that hormone therapy is a likely alternative, and just about as effective, to chemotherapy. Adam and I did the happy dance about this news! The only bummer being that I already cut off my hair! Then on Monday I learn that this is only the case when the tumor size is less than 2.5cm, and we already know that mine is at least 3.1cm. Did he not read this information on my reports? Dr. S didn’t mention this as an alternative…did he not consider this? Or did he consider this and not like it as an option? See where this gets messy? See why I want the earth to stop spinning, just for a second…or a day?!
Wed, Mar 7, 2007 8:22 PM
HI Guys...
I am starting to feel like a patient. I had yet another scan at the
hospital today. Tomorrow is the reconstruction surgeon and she will
probably have a list of things for me to do as well. Every single new
person I have met in the last week has felt me up! Enough already! The
weird part is, they aren't even going to be my boobs anymore, so I sort of
feel like, with all of the attention they are getting, they belong to
everyone now...everyone in a white coat that is.
The surgery is starting to freak me out a little now. It is beginning to
feel real. Just the thought of getting all cut up and remade is such a huge
thing for me to wrap my head around. I will be a one nipple woman for a
while...what is with that? Some of this is just too weird. And how one of
the chemo drugs is bright red and that for a while my pee will be
orange...yellow and red make orange, after all...ok, whoa, too much
information...
I am going to bed now. I hope you are all well. I will let you know about
the surgery date asap. Perhaps you could give Adam a call sometime and see
how he is doing.
Night,
R.
--------------------------------
Date: Fri, Mar 9, 2007 at 12:45 PM
Subject: Who wants to go for sushi?!!!!
So, to make the time go a little less painfully...who wants to go to sushi, and whatever else, on the 17th? Book your sitters now...
Also, the pre-chemo head shearing party will be held at my house, April 8th, (tentative date) (right Angela?!!! Ha!). Be there or be square!
Tue, Mar 20, 2007 at 6:23 PM
Stepping Out to Celebrate Life Fashion Show
So, a new friend told me about this organization right after I was diagnosed. I decided to check it out and she mentioned that they need models for a fashion show fundraiser for breast cancer. All the models have to have had breast cancer or presently being treated for it. The show is in September, right at the end of my chemo, so I am sure to be quite a looker.
Let's tally it up so far...tummy tuck, boob job, and now a modeling gig. So far, so good.
The event is in Marin... so I will let ya'll know when the tix go on sale! ;)
Surgery is on March 28th...
April 8th.
Jesus supposedly was resurrected today…being a jew, I am fuzzy on the details. I could also blame it on the Vicodin. By the way, I LOVE Vicodin., Not in an “I have got to get to a Narcotics Anonymous Meeting ASAP” sort of way, but when I wake up every morning and feel like the bed I slept on is now resting on top of my abdomen, Vicodin makes everything better. Sort of like Ice Cream did when I was pregnant. Chubby Hubby that is…thanks Ben, thanks Jerry. I digress.
From April 7th email
Perhaps YO would be an easier greeting at this time. I have been home since Wednesday...or was it Tuesday. I am pretty much thrashed. All that exercise and healthy living and for what?! I look like I got into a fight with a very sadistic recent escapee from Atascadero State Prison (the one where they send all the sexual predators in California). Good news is that I had enough of a tummy to make something resembling a female chest, however, all bets are off for the B cup. Oh well. I know ya all love me anyway.
I am very happy to report that I have my original belly button, just in a much different location...at least at this point. I hear that with all the bruising and swelling, things are going to settle in all the right places.
I will make this quick because the Vicodin is beginning to kick in. Things get messy at that point. The progress is that I have already had two of my drains taken out. Two more to go and there is such a small amount of fluid that I am sure they will be gone by Monday. Also, I have begun to take the regular strength Vicodin...which is kind of a victory, but truth be told, I was resentful that my surgical oncologist wouldn't renew the extra strength stuff. She said Advil should take care of the breakthrough pain...what, is she kidding?
I have learned what "fighting" breast cancer means. To me at least. Calling all the places that I have had scans, biopsies, MRIs, blood draws, making appointments with doctors, tumor boards at UCSF, having wonderful friends pick up pathology reports and fax all such info to whoever needs it. Arranging playdates, taking meds on time, figuring out chemo schedules and vacation plans. Enrolling in summer activities way early so that the girls have a life too. Dusting the crumbs out of bed that I had to eat at 3am so as to not get sick from the meds. Asking for help to do EVERYTHING...lifting a glass of water to take a drink, completely leaning on Adam to get me to the bathroom to dispense of said water...I think you get the picture.
Fighting for me means sustaining my life. Not that I think I am going to die of this disease, but soliciting every ounce of my energy to be who I am and not just the latest person diagnosed with breast cancer. God knows I am sadly not unique in that way. I won a major battle last night when I made it to Passover Seder at the Shanes. Vicodin and Valium on board with a stash of Advil in Adam’s pocket gave me the extra umph I needed. Walking into that wonderfully warm home filled with the smells of love and chicken soup bolstered both my body and especially my sprit. A couch was arranged for me to stay in repose, chairs were assembled in such a way that I could visit with whom ever I chose or who chose to sit with me. I was loved and I could accept it with grace. This is the accomplishment I speak of. Tomorrow my battle will be to make it to UCSF for my tumor board extravaganza. For 4 or 5 hours I will be examined, questioned and discussed so that in week I will have a full and complete report on which treatments their experts recommend. Then, I head back to the burbs to the plastic surgeon because my drains are getting so low on fluid that I am sure either one or both are ready to come out. This fight for my body to return to its regularly useful state compels me to push myself so hard as to make this very long day happen.
I know it will be exhausting to the point of unimaginable how we are going to get up in time to cross the Bay Bridge during rush hour to get across the city, find parking, deliver all the new patient forms to the correct places, then go through the exam process, meeting all new docs, change into a gown, change into my clothes, back in the car, back over the bay bridge, again trying to surpass rush hour traffic, then head down the 680 (yes, I am from southern California) to see Regina and get my drains removed, then head back up the 680 with absolutely NO chance of avoiding traffic at this point, to get home.
I am now in the phase where treatment plans are discussed and decided on. It is decided that I will for sure have at least one 16 week course of chemo and the hormone therapy that follows. As for radiation, second round of chemo or Herceptin...the jury is still deliberating.
I have had the blessing of so many angels and I want to thank you all. I get all of your messages but just can't return them yet. I truly feel all of your prayers and good thoughts. All of the cards, flowers, playdates, dog walks, visits (you brave souls!) and chocolate and everything else your kindness has showered upon me has been the best medicine imaginable. THANK YOU!
I do believe that a portion of my brain has become inoperable at this time. I will sign off for now. I will keep you posted as I can.
Shell
Date: Fri, Apr 13, 2007 at 12:24 PM
Subject: hi
Hi Everyone,
I know it has been a long time since hearing from me. There isn't much to report as of yet. I am anxiously awaiting the results of my meeting at UCSF last Monday. Once all the stains are in and the bits and pieces they removed from me have been thoroughly sliced, diced and played with they will be making their recommendations and speaking directly with my oncologist. Once we have a game plan I will feel much better. At least until that is when they start pumping me with all these exotic chemicals...then we will just have to see how great I feel.
So, I am waiting...that's all folks
Fri, Apr 13, 2007 at 1:36 PM
Subject: Oye Vey!
Well stop the presses!
Ineptitude has set in...slides have not reached UCSF from the local hospital.
I will not now make the tumor review board for this Monday and have been rescheduled for April 23rd.
I guess this is consistent with my whole experience with this cancer. Hurry up and wait...and wait, and wait.... Anybody have any good suggestions for DVDs, preferably comedies? HELP!!!!!!!!!!!!!!!!!!!!!!
---------------------------
Date: Sat, Apr 14, 2007 at 11:24 AM
Subject: Check this out!
One of the things that has been truly astonishing to me is the things that are missing from this equation regarding screening and legislation, awareness of what the truth behind this disease is and how we are all supposed to know anything.
Here is a website that I think you might find some answers from and way to create even more...
http://www.youngsurvival.org/affiliates/
Please take a sec and check it out!
Date: Sat, Apr 14, 2007 at 11:45 AM
Subject: check this one out too!
http://www.lbbc.org/
April 15
I want two oncologists to say the same thing. I get two totally different opinions. One is so sure, no choice at all. The other says we have options since I am 98% estrogen and progesterone receptor positive. Perhaps NO CHEMO! My first thought was OH SHIT! I already cut off all my hair. My second thought, how does he know it will work? My third thought "how lame am I to be the slightest bit disappointed that I may not have to have chemo because I already cut my hair! My hair has always defined me-attracted lots of attention. I have the hair of two and a half people! I wouldn't wish this on anyone and my favorite part of getting my hair cut is when they pull out the thinning shears at the end. I did and didn't enjoy the attention my hair brought me. It all depended on my desire to be noticed or not. If it was yes, I'd wash it, let it dry, encourage the long full curls to become even more dramatic by using some product or another. If I was feeling practical or hurried, up it went, into the alost eternal ponytail. My favorite was I wore it long enough to put up in a twist with the crazy ends creating a sort of peacock feather crown on tip of my head. It felt free or the weight of my hair yet also spunky and fun. The funniest comment I received after my first hair cut post diagnosis was "why did you do that?" Definitely not a compliment. Since hair cut one was described by most as "shocking", or as Adam described it "you look like June Cleaver" sans cool 50's dress.
A few days later I went to a Great Clips and got it cut shorter. I thought it would look spunkier, smarter. It didn't. A week later I went back and to get it cut the shortest it could go. They said it would spike up. I went for it. Spikes were everywhere. Oops. I rationalized it would be practical since I was going to be in bed for the next couple of weeks.
Before my first big outing, a wedding reception, since being diagnosed and cutting my hair and having surgery I got out our dog's clippers and tried to spruce up my do. It has already grown so much and with me taking off a snip here and there, I looked pretty ragged. I was still too sore and tired to get to the salon, which is what I should have done. Adam was in the next room. I knew he would hear the buzz of the clippers and I was afraid he'd come in and try to stop me, or even just give me his opinion. He didn't do either. He knows me so well that I am sure it occured to him that whatever he said would have no effect on what I was going to do. He gets frustrated when we are getting ready to go out for the evening and I try on three or four outfits, each time asking his opinion and each time disregarding it and picking something else to wear.
I really did a number on my hair! I learned the hard way never to take a clippers to my own head. By the time I was done I had patches of skin showing! I was horrified and completely stricken that in 20 minutes I had to leave for a party were many many family members would be. No hiding in my seat at the table! The horrible gaffes I made covered up nicely with the clumpy mascara sitting in my make-up drawer. After a few minutes I was all covered, but would I get away with it? Whatever, it was all going to fall out anyway.
At the party I got lots of attention for my hair, but this time it was for lack of it. I felt spunky in my closely shorn do. I even liked it when Cousin Steve rubbed my short, spiky hair. That is until I remembered the mascara! I was petrified that the make-up would turn his hand black! I tried to smile through my nervousness...afraid I would be found out...but nothing happened! I was so relieved, and it was also terribly funny. I had to keep this joke to myself though.
April 17th
Subject: Fw: Urgent Recruitment Message from the Sister Study
If any of you could help with this, please do so! Please read this message!
Date: Tue, Apr 17, 2007 at 6:58 PM
Subject: The latest
While UCSF toils away looking at every detail of every slide of each piece of flesh taken from my body, the folks out here have taken a much more straightforward approach. I guess it's the local hospital vs. the big research university way of doing things. Out here, they just care about getting rid of the cancer and to that I say GO BABY GO! But at UCSF, they are all for the advancement of any and all knowledge related to everything that happens to do with every single detail of my cancer. They are a major medical school, afterall. The bottom line is, I will be having the big guns on my side, regardless of what the UCSF information comes back saying. My oncologist was concerned that my lymph node was positive. UCSF wants to know to what degree, how many cells, etc. The treatment is the same regardless, so I will start next Thursday with my first Chemotherapy treatment. They want me to have a couple of rounds, so we'll have to see what comes next. The first one lasts 8 weeks. I will go every other Thursday for 8 weeks. Then I will have another round of a different cocktail for another 8 weeks. The first cocktail makes all my scalp hair fall out (in the first two weeks). The second one takes care of all of the hair on my body...so, yea for no shaving, but creepy for not having any eyebrows...I will be quite a site at the family reunion in August!
It looks like because I had a positive node and a tumor in such close proximity to my chest wall that I will be having to have radiation at the end of chemo. That is a long way off and not something I know much about at this time.
OK, so now the show gets on the road. FINALLY! Or as Kari said today, "Now get cracking!" Hey, thanks Frieda for the hat from Disneyland. I love it. It says "Mood subject to change without notice." and it has a picture of Tinkerbelle on it. PERFECT!
Cheers,
Shell
Date: Wed, Apr 18, 2007 at 7:43 AM
The latest
Right now I just feel half alive. I am not getting over the pain from my surgery as quickly as I expected and now I get sick from the pain meds. I haven't even started chemo yet, which I hear isn't the piece of cake that they previously made it sound like at the other MDs office. ...I have
checked and checked and asked and asked and there just seems to be no easy
way to go around any of this, the repercussions that is. The only way to go is through it. I have no idea what to expect, so it is especially hard to plan anything, or know what kind of support would be of most help.
Date: Wed, Apr 25, 2007 at 7:28 PM
Subject: Avon Walk
Hi Y'all,
On the eve of starting chemo I thought I would send this out...I will be officially be settling into the big comfy (?) chair at 10:30am.
My entire endeavor thus far has been one big learning experience, and one of the most enlightening has been the disparity of care that patients receive. Because Adam has an excellent job with the choice of a PPO for insurance I have been allowed the luxury of choosing my doctors, places of treatment and the excellent follow-up, second opinion from UCSF. All of these opportunities have given me the confidence to proceed without fear in pursuing the answers I so desperately want and the treatment that is best for my needs. I can't imagine it being anything but what I have experienced thus far, but for so many that are uninsured or underinsured, they don't get the same choices I have been presented with.
This being the case, when I learned about the Avon Walk in SF I was inspired to participate because their entire mission is to provide care for those who don't have the choices I have. All the money raised goes to the men and women who have this awful disease but cannot afford the same access to care.
How do I expect to do this, being in treatment myself, you may be asking...well you aren't alone, but I have a plan! I am going to begin the walk, walk as far as I can and then stop. Sounds pretty simple, huh? When I found out they have all this support for those like me, that made it even better.
So, here is how you all come in...I have to raise 1,800 bucks to participate. So, although I abhor all those school fundraisers and pleas for money for various causes, I am succumbing to doing if myself for this cause. If any of you are interested in helping me, I would be oh so grateful that I would be able to help provide care like mine to those who are not so fortunate. Perhaps when I return to nursing I will be able to do this directly in some capacity, but for now, this is the best I can do...and I really want to do it for myself too. It keeps me positive and motivated.
Date: Thu, Apr 26, 2007 at 3:24 PM
Subject: I survived #1!
Hi everyone.
Let me just start out by saying you are all so AWESOME for sending me such votes of confidence and for your support for the AVON walk. I can't even thank you enough! Having this event to look forward to is such a great motivator for just making it from day to day. It comes pretty much at my 1/2 point through chemo, so I think it is great timing. I will be done with chemo in September when the modeling gig is, so that will get me to the finish line!
Chemo was weird. The nurses were great, nothing hurt and I was very comfortable in my big chair. It took about 2 hours for the whole thing. I saw all ages of adults in there at all stages of treatment. There were two other women that looked under 40, the rest were over 60. About 12 in all. Some looked really sick, others were talkative and upbeat. I saw my oncologist at one point and we got his picture (for you M.J.!) . In fact, Jacquie got a couple of pictures while we were there. I figure its the journalist in me that wants to document all of this, but it was MJ suggesting that she'd somehow put all of this together that spurred me on. One of the nurses thought we were crazy to want to take a picture, but then the patient next to me said she thought it was a great idea to document such a profound time in one's life and that she didn't want to forget this, she had that attitude, sort of like what is happening to me, that you can get so many positives out of this if you are open to it. It happens all the time. That being said, we did order the mini wtf? buttons for my hat because I never cease to have that reaction whenever I enter a new phase of this treatment process. More on that another time....
I wish I could say I am sailing through the treatment today, but I just took an ativan because I feel it starting to get to me. I was ok for a good 2 hours. Jacq and I even went to lunch...then something indescribable started to set in, so we headed home after a trip to the book store. It is so nice to have books on cd since it is really hard to read on all of these drugs and TV just sucks. I will have to beef up my library...at the library. Thanks Diane and Judith for your previous contributions! I have found a wealth of the things at our public library, so it is a great alternative for me.
Thanks everyone who has sent me funny downloads and suggestions for comedies on film. They are great!
I see others walking around town now, I can tell they are in treatment for cancer. It is in the cautions steps they take or the baseball cap sans ponytail or hair on the sides. We observe each other in passing, as if giving a silent acknowledgement that we are members of the same club. We are the ones whose lives have slowed down for the moment and we seem to be spiritually at just a little different pace than the rest of the world. However, I could be doing some serious projecting and am full of it. In any case, this sure is my experience.
Ativan kicking in...
Cheers,
R.
-----------------------------------
Date: Sun, Apr 29, 2007 at 10:05 AM
Subject: Day 4
Greetings from bed.
Well, I can't tell what my good day is going to be, yet. I was told there is every possibility in the range from some people are in bed for 10 days straight, to the superpeople who go right from chemo straight to work and never look back.(Any body out there know one of these rumored to be existing people? I'd like to talk with them!)
I struggle mightily in the mornings. 6-8am is the golden period. No sick feeling and wide awake. Then around 8am strange feeling sets in and I am back to taking a pill or two or 4 to combat the nausea. They send me to bed, as I have not managed to learn yet how to stay vertical on a combination of Zofran, Compazine and Ativan. Perhaps it will come with practice.
I wait as long as I can each morning before piling on the pills. I want to know if perhaps my bad period is over, like when I woke up this morning I felt so good that I got up and though, "OH, I must be over that bad spell and this is my rhythm." I made it to 8am with that attitude. I started with the Zofran and after an hour added a half an Ativan. So far I am holding at this level, however I am ever so grateful not to be in charge of any children or have any other responsibilities at this time.
Yesterday we had a scene here right out of Weeds. In fact, Jacq and I (having been encouraged to rent the show as a good diversion) were in the middle of watching the first season. Adam was out with the girls and we were zipping through each first season episode when, I will put it this way, a couple of friends showed up for a "Clinical Trial". Now, I have become somewhat of a beginning gardener since owning a home, but I would not have been able to tell you what it was that had arrived with said friends. Well, to make a long story short, they took care of me, all the while we were looking out the front windows and listening for the sound of the garage door opening lest Adam be returning from Pixieland at any moment. The funniest part was that when my friends were leaving, our neighbor, Brian and his dad were hauling some dirt from the street that had been delivered earlier that day, and taking it to their backyard, taking turns with the wheelbarrow. At the point where my friends were taking their leave and packing up the dogs and such, Brian's father came over to say hello. The funniest part was that he was wearing a navy blue baseball cap that had written on it in bright gold letters "ATF". I introduced him to my friend, who suddenly noticed that she had left her keys in our house and ran back through the front door. Ed and I said out goodbyes and then I noticed that said friend was nowhere in site and her dog was taking off down the street. In my Hello Kitty PJs, I hobbled down the street and around the corner before the dog would let me catch him. He, probably being a puppy and 60 or so pounds, pulled me all the way back home, making that six inch place on my abdominal wall really hurt like hell. By the time I returned, all was packed up and ready to set off. I had no idea that the man with the ATF hat had any relation to "misplacing my keys". The funniest part of the whole thing is that Ed probably got that hat at some liquor store on a hot day and he had put it on to protect him from the sun while hauling the dirt. He has absolutely nothing to do with the "ATF". It also made me wonder if this was simply a side affect of the usage of what was described to me as "local produce". It I ever do decided to write more fully about this, that is what I shall call the chapter, "Local Produce".
I did find out a lot about the usage of medical marijuana and all the access there is to it up here. To be honest though, it is not for me. However, I would like to check out the "edibles". Some butter for my toast in the morning, if it could take away this awful nausea and leave no side effects, sounds appealing to me. In order to get the butter though, I have to have a referral to get an I.D. card to get to enter one of these highly gourmet places approved under prop 215. Apparently they are like stores with an assortment of buds to combat just about any side effect of whatever treatment you are going through. Very specifically grown for each condition with names of all kinds. I think for purposes of my own curiosity, it might just be worth all the effort to get the card and have a look-see. It would sure fill out that chapter nicely, don't you think? I promise I will stick with the butter!
Cheers!
R.
---------------------------------
May 1
“Are you crazy?” People ask me as I solicit donations that will enable me to participate in my first breast cancer fund raising walk. Perhaps, since I will be in the middle of chemotherapy when the walk takes place, that I am crazy. I am just trying to live through this horror film that has become my life.
Having ever been critical of the shape of my body, what I haven’t accomplished, how many books I have yet to read, or any other perceived deficit in my life feels so frivolous now. Coming to this conclusion seems so cliché. It is like a formulaic novel…"cancer patient faces death only to survive and emerge with new world view, more tolerance, compassion and spiritually centered. Copies now on sale at your local book store.” This is true though. Life has become simplified, out of dire necessity, yet the result is still the same. There is more stillness now, if only fleeting, as I have yet to put to bed the exact path of my treatment. (The exalted second opinion from UCSF has thrown into question what I had thought was a solid plan.) I always felt that my busyness got in the way of my having a richer life. I think I am the kind of person that needed something to slam into
Date: May 2, 2007 2:42 PM
Subject: emerging...after first round of Adriamycin/Cytoxin
Hi all,
I have just emerged from 6 days of nausea. I now have been upgraded to feeling like I have a brick in my stomach, which is so much more preferable. Now that I am better they say that I will perhaps feel almost normal by Friday! My white count was 1.4 this morning. I am still pretty low energy, but now that I am not nauseous all day it is soooo much better.
So , perhaps this is my pattern. 5 or 6 bad days post-chemo and then a good week before the next round. This was such a relief to have today be different, because now I am not so afraid that I will feel awful for 16 weeks, which I wasn't so sure how I'd deal with that! (OK you guys, give me a break about my writing...my brain is such mush!)
Even the Nurse Practitioner that I saw this morning said we can do better with the post day three stuff. It is pretty much a given that for the first 72 hours I am generally checked out. But after that, she said we can try some other options and see if we can't get me more alert and less queasy. I told her it wasn't the fault of her plan or the drugs not working and that I was purposely not taking so many of them because I was trying to stay awake for the girls. She gave me a Rx for Marinol for the next round and said that this might work better for the nausea with out the sleepiness. We'll see...I think it is funny that you can get Marinol at Target but you have to go through all this other rigamarole to get an I.D. card to hit the clubs. (if you have no idea what I am talking about, refer to Sunday's email, or I'll fill you in on the phone!)
That's it for now...Everyone is coming home right now.
Date: May 12, 2007 5:19 AM
Subject: Second round, day 2
Hi All,
I can honestly say that this time, the experience with chemo is much different. I do not feel so at the mercy of my body. I don't know if it is because I had one round and I am somewhat conditioned now, or if it is all the wonderful advice from the nutritionist I saw last week. She gave me so may tips to combat nausea, like eating a dry, white, baked potato with salt at night. This is supposed to sit in your stomach for a while and help soak up all the acid that builds up at night. Needless to say I have been eating a baked potato every night! She also gave me a routine for eating that starts out immediately when I wake up with something solid, like crackers or toast. I am to wait 30 minutes until having anything liquid. Then, after an hour, I can begin eating, followed by liquids an hour later, and so on. The whole purpose is so that the food gets as much opportunity for digestion as possible without the watering down of the liquids. It works! She also had lots of advice about what types of liquids to drink, only 25% should be water, and recommended drinking only dark juices like pomegranate, cherry, purple grape, and such. Another 25% should be salted broths (to replenish the electrolytes that the chemo robs from your body), and the last 25% can be nectars and sherbets, etc. She also recommended lots of supplements to combat the other side effects of chemo like mouth sores and such. She is a genius in her field! I am going to have a consult with her as soon as all of this is over just to get a program for the rest of my life. She has so much knowledge about cellular development and foods/supplements and how the all interact and how to change tumor growth, prevent genetic changes as we age...etc... I highly recommend a visit by anyone!
I am getting pretty familiar with the staff at the Oncology office. I had the misfortune of getting a clot in my IV line, right next to my port. I could tell something was wrong because my arm started to swell uncomfortably and a big hint was the purplish color it started to turn. Being a nurse in the midst of being a cancer patient is a double edged sword. I recognize symptoms probably much earlier than the average patient, and I know how long it should reasonably take to get things done, i.e. get a stat order for an ultrasound processes. Much to my dismay, it took four and a half hours and two phone calls to get my order processed after speaking with my doctor. As I was waiting I was watching the purplish color travel further up my arm. I struggled with being patient and being assertive, and while I never felt I used an inappropriate tone under the circumstances, I bet if you talk to the medical assistant I spoke to in those four hours, she might give you a different answer. She actually said things like "I have a whole stack of papers here on my desk, I am sure your paperwork is in here somewhere", and " I am still working on all my morning patients, you'll have to wait". I then babbled something about blood clots, wanting to avoid going to the emergency room, having a stroke, pulmonary emboli, heart attack, whatever... Funny how after that she called back in 15 minutes and had an appointment for me at the hospital within 30 minutes. After all was taken care of, I searched out her desk and spoke with her, apologizing if I came off rude or impatient and thanking her for her prompt attention (%$#@*&^).
Now I am on Innohep, a daily injection blood thinner, and Coumadin, which is another blood thinner that I take orally.
This is why I am getting to know all the staff so well now. I see them everyday for my injections. I have labs every four days to make sure I am getting the right amount of blood thinners. They tell me that the clot is in my line and that when they take it out after chemo it will come out with the port. It is very unlikely it will break off and go somewhere else in my body.
I am getting the sense that I am an unusual type of cancer patient. When new developments are presented to me, I ask my questions like everyone else, but often the comment I get in return is "do you have any other questions? You are so calm" When I started getting my shots the nurse would remark, rather puzzled "You are still smiling." When my nurse on Thursday mentioned someone in the chair next to me referred to chemo as "the devil", I said that it was rather the opposite, since this is the medicine that is going to get me better. Perhaps is it is temporarily poisoning my body, but it is what is ultimately a major player in giving me my life back. No resentments here!
The girls are doing much better. Hani remains a champ in all of this. Mia's moods and difficulties flow with my own. As I get more functional and involved, she gets right back to her old self. I think having passed the first round and now knowing what to expect and prepare for was a major accomplishment and has proved extremely helpful in helping us understand how all this will go from here on out.
I am now completely bald. My hair started coming out Tuesday and by the end of the day it was everywhere. In the shower, my bed, the cupholders in the car. When it made its way down my shirt and started to itch, that was it! Off to get it buzzed. The most wonderful woman was introduced to me. Her name is Karen and she specializes in children. My neighbor, Renee, brought me to her. She cuts Renee's hair, and she had an appointment the day I mentioned that I thought it was time for the buzz cut. Karen squeezed me in and took care of me. Renee had told her the circumstances of my visit and she was so positive and upbeat, making us all laugh and smile the whole time. It was a great experience. Now that clear mole on my head is totally exposed (see, you all didn't even know I had one!) and the girls have discovered that if you push on it something happens on my face. My eyes will cross, or my tongue will stick out. Pretty funny.
One of the nurses remarked to me yesterday that she cried almost everyday after work for a year after starting her job. She was so sad for all the patients. Then she told me that her grandmother got cancer and she saw personally how she coped, and she learned that this was another part of life. She started to learn about how peoples attitudes are such an integral part of their recovery and it gave her a new perspective. She noticed what I was wearing, orange cropped pants, white t-shirt and a crazy orange meremeko style bandana. She said it was so helpful to the staff when someone like me walks in. I asked her what that meant and she said that fact that I was wearing bright colors, saying hello to the staff and smiling through all this was so helpful to them. It is especially helpful to ME!
Date: May 14, 2007 8:03 AM
Subject: Reality
Lest you all think I am some kind of super human being, let me just make it clear that every day is extremely different! The weekend was pretty much the same, drugs doing their stuff, me doing what I needed to do to get by. A/C is like being in a dark tunnel. I can see the tiniest speck of light at the other end, but it is so black and long and silent all the way through. It reduces me to staring at my ceiling fan, debating whether it is going clockwise or counter clockwise. I stare at the fan all day. It is my stimulation, the only amount I can tolerate. I am exteremely sensitive to noise, so no music, no movies. I can't focus enough to read. Don't even touch my bed, the movement exacerbates my discomfort.
Yesterday... total melt down. The reality of the daily shots, every two day lab tests, fatigue, nausea, chemo again next week...which doesn't seem so far off right now...it is all piling up on me. I almost feel like I can't catch my breath. I know that as soon as I am done with the daily Innohep shots that this will all seem more manageable, but right now it is too in my face. The last option for taking my blood in my right hand, where the veins are small and slow, only makes for a more painful experience. I now know how all those patients I used to see, who where so quiet and looked so delicate, actually feel. What a perspective I now have.
As for those left wondering where we are about the UCSF recommendations, here is the latest. It turns out that they do have some realistic reasons for wanting me to have more surgery. The Onc at UCSF said that there is a greater likelihood of the cancer returning in my lymph nodes than anywhere else in my body and that they want to know how extensive the "positivity" is in my nodes overall. They have a formula whereby they can predict quite accurately by sampling 10 nodes. This isn't just some random number. My oncologist also explained that it helps in determining exactly the course of radiation I should have that will be the most effective. The bottom line is, I have to see some radiation oncologists for consults to see what they recommend. Nothing has to happen immediately. In fact, nothing can happen until Chemo is over, so this will all come into focus around the end of August. The UCSF onc and my onc are going to discuss all this in the meantime. I will keep you posted. All this just makes this road seem so much longer.
Date: May 17, 2007 1:35 PM
Subject: Update...
Grandma passed away yesterday...will be flying to LA tomorrow for funeral,
will write more soon.
Date: May 20, 2007 6:49 PM
Subject: The Bald and The Beautiful
Look, Ma! No hair!
This, my friends, is the ultimate ponytail! Talk about low maintenance! And cool, oh my goodness, this is perfect for the summer. However, I have yet to actually walk around in public like this. I wear my do-rags and baseball caps. I have yet to go swimming, but then the cat will truly be out of the bag...can't hide it then.
This phase has become an experience all in itself!
Otherwise, feeling good. Blood counts are extremely high so I have lots of energy. I am taking calls! That is until Thursday...
Date: May 29, 2007 7:59 AM
Subject: Three down..
...and what feels like a hell of a lot to go.
I haven't been much for writing, although it doesn't mean I haven't had a lot to say. Perhaps when this round of chemo wears off, but for now, here is all there is....
I am struggling with what feels like an enormous road ahead of me. This chemo thing is really proving to test my strength and disposition. I found out last week that radiation will begin three weeks after chemo ends and will last for six weeks, with treatments every single day. I sometimes don't know what is going to get me through. My emotions are definitely more raw and I feel myself withdrawing a bit more into my small circle of family and friends. I at times don't recognize myself. My nails are turning black, I still stun myself when I see my complete baldness in the mirror. The family, Jacq, and a few neighbors are used to it, they look at me all the time, but I don't and am still struggling with it. On the hot days we have had and have gone to the pool with the girls I am tempted to go without the scarf because my head is hot. (All that hair I had also worked as an insulator against the heat I guess, because now my head gets hot so fast.) I should just lather on the sunscreen and give it a go, but I hesitate, afraid that I will draw too much attention, or repel people.
I am on the upswing as far as days out from chemo goes, so I am sure I will be feeling better soon. As it is, one phone call can leave me feeling wiped out.
As for medicinal therapy...I have found alternatives that have been helping me more than the Rx I have been trying. Acupuncture and the stim band I think are working really well. As is the occasional dip into the other herbal medicine that has been delivered by a special friend. I don't use it all that much, but it keeps the nausea at bay and I am still present, which is more than I can say for the prescriptions I have been given. In spite of all the pills I have been given and tried, I was still nauseas and quite out of it. I am starting to think they don't work on me.
I have tried to discuss all of this with my oncologist, but he doesn't return my calls. His nurse practitioner does, and her cure for anything I describe is to prescribe more pills that I get filled, try and still I am in the same place with the side effects. See why I get frustrated?
Enough from me...I can see where this is going, don't mean to drag you into this area. One day it will all come out in another form! One thing that I am continually grateful for is that I have training as a nurse, and aside from it helping me personally as I go through this, I am constantly more and more motivated to go into this field when I do go back to work because I think I can make a huge difference based on just what I have experienced thus far.
best,
shell
----------------------
Date: Jun 1, 2007 5:09 AM
Subject: Thoughts...
It is June 1st, and I am still stuck in February, when all this started. I feel like my real life stopped back then. I am coming out of the chemo funk and am back on the upswing. I am left very tired, more so than with the previous treatments, but that is what they said to expect. The good days are ever so slowly getting edged out by the bad days. I am now at an even 7 bad, 7 good. 5 more treatments to go. I figure at this rate I will have two good days between treatments by the time I am at the finish line. When I have those good days I feel a sense of urgency to live as fully as possible. On tap this week is planting the courtyard and placing some more river rocks and bark (with lots of help from Jacq), planning Erica's graduation cake, and going to the Art and Wine Festival. Also, since the summer fruits are in season again, it will be an especially good day at the farmer's market on Sunday. It has been such a relief to talk about things like the upcoming school board meeting on Tuesday( thanks Lynn!) , getting the details nailed down for making the cake, and what we need to prepare for the Avon Walk. This breaks up all the cancer related topics that have taken up so much space in my mind.
Being a cancer patient has turned out to be such a busy position. When I am not struggling with the after effects of treatment, I am busy researching, reading my parenting with cancer book, looking into complimentary therapies, and now dealing with billing and insurance issues. I just love the new voice activated systems that these big companies have. They work so well (not!) when you have small, exuberant children who play loud enough for their voices to be picked up by these automated operators, forcing the system to continually (automatedly) say, "I'm sorry I did not understand your request". When they have to say this three times, the next response is "Goodbye" and then the call is disconnected. When I did finally get through this week, and actually talked to a real live person, I was told that their computers were down and I had to call back in a couple of hours. If you heard an angst riddled cry of frustration on Wednesday around 2pm...that was me. In spite of all this, with the return of my health I begin to participate more as a mom. It is nice when I can finally take the girls to school and make lunches and play with them at home. This week Mia really hit it off with Dr. Seuss. It has been such a pleasure to be reading The Cat in the Hat and Green Eggs and Ham again. Hani and I have had some great games of fetch with Maizy these past two days. I feel so relieved that our dog finally plays with the girls. She has been an endless well of joy as far as cuddling and hiking goes, but she was lacking in the play department. Now she'll fetch for anyone. Also this week, Hani received an award at school for perseverance. This is her third one. The first two were for sense of humor and initiative. All of this is makes me so happy for her...and is also reassuring. I worry so much at times about the girls in the midst of all this. It is so wonderful that she is being recognized for these essential attributes. It give me some sense of relief.
I am in the process of looking at new oncologists to perhaps make a switch. The very first one that I met turned out to be a sexual predator, and the one that I have now doesn't return calls and has trouble scheduling me in for appointments. Hummm...not good. To be continued. This is the first time in a long time that I felt a desire to be in LA. There I had my own bottomless reservoir of resources in the medical community. Up here I have to make several calls to get one or two recommended names.
I so appreciate all the emails and voicemail messages I have received. Keep 'em coming. It helps so much to bust up the isolation and loneliness that comes with this situation.
Gotta go...time to make lunches!
June 6
I used to wonder what it would be like to shave my head. It was popular seveal years back and I remember being envious of those who had the courage to do it. I was too self-concious, too vain. Well, fate took care of my curiousity, and now I don't even want to be covered up. It is too hot, or too itchy to wear a scarf all the time. Don't even talk to me about a wig. I considered it at first, but quickly summised that it would feel to fake and I didn't want to feel like I was hiding anything. I don’t want to make others uncomfortable, however my discomfort makes me consider my needs first. If I walk around exactly as I am, I am being exactly who I am in this moment. Why should I have to deny this or sheild others from what I am going through? I am modeling self acceptance for my kids. I have this fantasy of walking down the isles at Safeway, completely bald. I imagine I will shock people …people will stare, turn their heads. But it feels like something I want to experience. I want to see what happens.
(fast forward…I did it, again and again. It almost seems funny to read this because I go bald everywhere all the time. I usually have something on my head, but if I get hot or uncomfortable, I just take off my hat or scarf and go naked. No big deal. I do get stares and double takes, but I do even if I have my scarf or do rag on, so what is the difference? It is not as if you don't know I have no hair just because my head is covered. And I could care less anyway. I am used to it now.)
Date: Jun 12, 2007 3:31 AM
Subject: Half way there!
I haven't been much for writing lately, thanks to all of you who write to me anyway.
On the celebratory side, I have finished my last Adriamycin/Cytoxin cycle of chemo. Just in time too...because this stuff feels like it could kill me. The lingering effects are being drawn out with each round...the fatigue is indeed overwhelming. I had a better go this time in the nausea department, getting an extra iv infusion of meds and fluids on Friday really seemed to help in that acute period, yet it is now Tuesday morning and I am still feeling pretty bad. Next round I start Taxol and will encounter some different effects from that. The consensus though is that Taxol will be somewhat easier to deal with.
I have now taken to walking around completely bald. The weather is warming up and it feels so much better to go uncovered (Don't worry, I wear lots of sunscreen!). It is also quite liberating to walk around completely as I am, regardless if I am the only one looking like I do. I wonder how many others I pass each day that are also bald. I was pretty uncomfortable at first, wondering what kind of looks I would get. But now I don't even think of it. Only occasionally do I get repeated glances from people. Mostly my experience has been that people just smile, or even open up to me about my current state. This weekend Hani, Jacquie and I got our nails done and the woman next to me asked about the black spots on my nails. I just came right out and told her it was from the chemotherapy. She asked what I was in treatment for and we ended up having a perfectly normal conversation. It is really nice to have these experiences, where everyone is not trying to pretend that anything is different, to acknowledge that there really is an elephant in the room. I even wonder how many people might think of their own vulnerability and get checked out due to the fact that they see me walking around in all of my "in the middle of treatment" glory. I have to think too that this experience may just translate into a lesson in self-acceptance for the girls some day. They certainly have no issues having a bald mama. I think that says a lot about this experience for them already. This period has been very difficult for them in many ways, and we are coping as best we can, but I have to believe that there are a lot of positives that will flush out from this in the end.
I see a new Oncologist today...so we will see how that goes. Not much else to report, so I will end here...
Date: Jun 16, 2007 2:24 PM
Subject: me again...
Well, it is Saturday, a total of 9 days post-chemo. I am supposed to feel better by now but I just don't. Perhaps it is the cumulative affect of all that lost sleep this week. Or maybe it is the persistent cough I have had for days and days now. I went to my wonderful internist on Thursday to check it out. I was having shortness of breath, sounded like froggy from The Little Rascals and my lungs felt like it was the '70's and I had just spent all day at the beach in the smog, my lungs burned. I had a mini-breakdown in my car that morning because I was thinking that I should go to the doctor, but it was the last day of school, parties were going on, there was a pool party at the swim club that afternoon that the girls and I and our friends were looking forward to it...I had a busy, normal day, and I didn't want to give it up for an afternoon at the doctor's office. I knew I would need to get a chest x-ray and that would take forever since it would be ordered stat and I wouldn't have an appointment time. Like hell I was going to throw away all that was going on that day for that. Yet, I also knew that should I have an infection, I would need treatment and that if I didn't address this issue soon, it would be much worse later. I was pissed. I was also extremely confused as to which doctor I should call. I didn't want to call the oncologist I was leaving...and I didn't want to call the oncologist I was transferring to. That is when I thought of my internists. She has been through this thing with me from the get go. She was the one I went to at the outset of this whole drama and who has kept up with me the whole time. Thanks MJ for encouraging me to call her. When I spoke to her office they gave me a choice of appointment times, 11:45am, 1:30pm or 4:30pm. I decided that whatever I had could wait until the 4:30 appointment, and just to reveal how insane I am, I figured that if anything were to happen to me before that, I would be in good company and there were plenty of friends around to call 911. We ended up having a lovely afternoon and I left directly from the pool to my appointment. Turns out that I have been experiencing some asthmatic symptoms...coupled with an increased abundance of mucous probably from the Adriamycin. I received a couple of inhalers. I also asked for some sleep aids. Both of these things have only had marginal success. I continue on...
I have completed all of the necessary steps to switch doctors. I am very hopeful that this will be better. The new doc goes by the name of Dr Sho. She is young, very nice, thorough and smart. Already she has requested all of my records and has had the chemo nurse, radiation oncologist and lab call me to schedule all of my appointments. When I called the previous oncology office to cancel what I had on the books I was first put on hold, then I had to leave a voicemail message for the nurses. Figures. It made it easy, as all this just confirmed that these people are just too busy! Funny thing was though, within 45 minutes I got calls from the nurse practitioner, the chemo nurse, AND the oncologist! Remember him? The one too busy to see me on schedule, or return my call within 7 days? They all left messages for me. Only the nurses asked me to call them back. They want to know why I am leaving. I am happy to tell them. Don't worry, I will be nice. But I will tell them the truth. On my message I thanked them all for their help and care and made sure to mention that this was not personal.
I am so relieved to be out of there.
On Monday I meet Alice, the new chemo nurse, for Taxol education. I will admit that I have been putting off looking up Taxol because I just don't want to deal with it. Getting through the AC was such an ordeal that I don't believe any of the talk about Taxol being a bit easier. When I finally did read about it today I cried for about 30 seconds. As I write this my right eye continues to tear. This happens on weird occasions...perhaps it is my crying leaking out. This isn't a particularly conscious thing.
I have an appointment for my consult with my radiation oncologist on June 26th. His name is Dr. C. Everyone has him around here and he has a good rep. I have to go to the basement of the hospital. This is where my treatments will be too. Convenient, as it is only about 10 minutes from home. The basement aspect is kinda Frankenstein to me. Of course, with radiation, it has to be isolated from the living. All of this treatment is so unbelievable to me. I am being poisoned by chemicals far worse that anything I have ever consciously let enter my body, now I am going to be zapped by radiation way harsher than the sun that I so fastidiously lather sunscreen on to avoid...all so that I can reclaim my life. A true head scratcher!
I had a wonderful treat on Thursday. I was scooping ice-cream at the pool party this week when above the crowd of kids there was this voice that called out to me "are you a survivor?" I looked up from my scooping duties and saw this red-headed woman with the most beautiful ringlets looking at me. I said back to her "I am working on it". Then she told me that she looked just like me two summers ago and that there was life at the end of the tunnel. I thanked her for coming up and telling me that. Then she disappeared. I later found her manning the pizza table and I introduced myself. She was energetic, positive, smart and funny. She told me that she used to have straight hair. It was a pleasure to talk with her, although Mia was giving me the evil eye because I wasn't getting her pizza to her very quickly. I had to go, but got her number. In that short span of time we managed to say a lot. We both had the same surgeon and figured that out because she is the only one who places peripheral ports. This new friend, Grace, appropriately called it "The Gorey Port", named for the surgeon. It is like we are a part of this club, branded by the port placement. I have to tell Dr. Gorey (isn't that the worst name for a surgeon?) that she's got this little band of disciples all over town. Everyone in this field knows who my surgeon is by looking at my right arm.
Speaking of being part of a club...having breast cancer is a lot like being in some messed up sort of sorority. ( I am guessing here, since I was never actually in a sorority in college). The hazing SUCKS, but the camaraderie is awesome. I mean, how many people can be diagnosed with some horrible disease and then go home and get on a whole bunch of websites and chat with others just like them, or find multiple websites devoted just to their disease, join thousands of women and men on walks all over the country, have specifically tailored support groups and on and on...and let's not forget that I am even going to be in a fashion show in September, just because I have breast cancer! Heck, my disease even has it's own color! We have a ribbon, we have t-shirts and buttons and bumper stickers! I can even go to the American Cancer Society and get free makeup tips and moisturizing advice, complete with samples! Never underestimate the power of women, or survivors.
Date: Jun 20, 2007 6:29 AM
Subject: T-minus 25 hours...
...and counting until Taxol. When I first started all of this I thought I was tough, that perhaps others find themselves weakened by all of this, but some how that would not be my predicament. I was strong, healthy, fit. That would be my protection. Wrong again! This magical thinking didn't help me avoid getting breast cancer either. Now all I have to do is think about settling into that chair tomorrow and I start to feel slightly apopletic.
I keep waking up at 4am, despite Lunesta and Ativan, and after being slayed by fatigue on Monday and needing to be rescued by Kylee taking over my duties for the day I have resorted to coffee. One cup and I feel half-way like myself. I know this is awful for my adrenal glands...but with Adam and Jacquie away, and two little girls counting on me, I need it as my back-up plan. Frieda is my backup this afternoon...thank God for such good friends.
I know I will move past all of this eventually, and that by next year this will all be merely a bunch of articles in need of editing...but right now I am constantly reminded of the inevitability of death. It happened the other day when I called our local hospice for a referral for kid's services. After learning that I was the one with the cancer they took the opportunity to ask if I was in need of services for myself. "NO!" I replied...Never has "no" been spoken in such an affirmative way! Then, in talking to Alice, the new chemo nurse, she discussed with me the importance of my Advanced Directive, having one that is. It never ceases to disturb me when nurses are discussing with me issues that I used to talk with patients about when I was a nurse. Being on this side of the fence is a constant adjustment.
So, back to Taxol. New drug, new side effects...we'll see what happens. The nausea supposedly takes a backseat to joint pain and neuropathy. I hope this is true. I have had a lot of experience with joint pain. That I can deal with! Alice was encouraging me to just surrender to the drugs, to let myself take them and help me with the side-effects. This isn't the first time I have heard this, but it is still hard for me to do. I am still trying to hang on the some form of myself in the midst of all this and the drugs just seem a way to completely check out. Alice makes a good point though, I could sleep thought the worst of it, or I could be awake through the worst of it...sleeping is sounding like the better option. She kept focusing on the "slight detour" of this experience in my life. That I only have to do this for a few more months, then it will be all over and I never have to take another pill again. (So take them now, that was her point.)
It has been so nice to be back driving the girls to camps and swim lessons and even the dentist. On Monday Mia and I arrived early for her camp and were playing hide and seek at the park. She went into some bushes and I tried to find her. I managed to meet up with an invisible drip system and a sloping hill, wearing my practically treadless Birkies...can you picture what came next? My feet went completely out from under me and I literally fell on my ass...black mud covered my shorts, most of my legs and one arm. We were cracking up! Then yesterday we got to the park and Maizy was with us. It was pretty deserted so I let her off leash. Being the dog she is her radar quickly locked on the 50 or so geese that were contemplating a morning swim in the pond. She made a dead run for the shore and herded them all into the water, jumping in after them. We were in near hysterics watching her swim after all those birds! She put on quite a show for the few people out walking at that time.
This week has been so NORMAL!
July….
Caution! This email has become like a journal entry...proceed at your own interest level.
I have now become, what my brother-in-law Ron would say, "completely aerodynamic". These last few mornings I have awakened to discover fewer and fewer eyebrows and eyelashes on my face, and more and more on my pillow case. The ones that remain are hardly visible. Yesterday morning was the most dramatic change. I scared myself looking in the mirror...my first thought was "I'm going to scare the girls!" They did react. Hani saw me first and looked at me with a mix of curiosity and confusion. "What happened?" she asked. Mia looked at me and with a wry smile said "You look like a boy...you look like an old man...you look like a boy, you look like an alien". I guess she was still processing this new face in front of her. After an entire day I still had trouble looking at myself in the mirror. I have never had an experience where I would see my reflection and not see me. When I put my contact in this morning I had to look again. I still don't see me looking back. Instead I keep seeing this teenage boy I had the privilege of taking care of way back in LA at Cedar Sinai. I was just out of Nursing School and he was my first terminal cancer patient. Before yesterday morning, I thought this is what he looked like. Now I know that this is what Caucasian people look like when they loose all contrasting color on their heads and faces. Right now, the two of us could be twins.
As I walk around among crowds, I experience different reactions to my appearance. The most obvious are the ones where people steel a glance at me and when I return their gaze, they immediately look away. I don't even have a chance to smile at them. Smiling is sort of a way to invite someone in, and they don't even want to get on that level. I am merely a curiosity, or perhaps it is that how I look is a bit shocking. Then there are those who see exactly what it is that I am and courageously confront me with their concern or support. Last week we ventured to San Francisco for the Gay Pride parade. It was a sort of coming out for me since becoming so "aerodynamic" as I hadn't been on BART or among so many people for since before my surgery. There were many glances on that subway ride. I asked Adam if I had now reached that point where it was totally obvious that I was a cancer patient, like the ones we saw in the hat catalogue in the Oncologist's office that very first time we met him. I remember having that initial reaction of shock at seeing all the women (no men in the hat catalogue!) with no brows and lashes. Now I had fully joined their ranks. No sooner than at our first stop, a man standing in line next to me looked right at me and said "you look beautiful". What a stunner! He warmed my heart. What a perfect thing to say to a total stranger who looks a bit like an alien. I took his hand and thanked him and he looked like wanted to hug me. He left me with a huge smile and a lot of faith.
Just before getting off the train, Adam noticed that the woman across from us had on an orange arm bandage. It looked just like the compression sleeves lymph edema patients have to wear, so I asked her if that is what it was. She said yes. I mentioned that I need to get one and she told me how she got hers. She revealed that she is a twenty year survivor. When she first got diagnosed she was told she had a year to live. She had a one-year-old and a four-year-old. She remarked about my appearance and asked if I was having chemo or was I finished. I told her I was in the middle of it. She empathized with my situation and then said "It's a way to stick around". We both laughed. Later, after walking a block among thousands of people, we miraculously ended up standing right behind her and her partner and her daughter to watch the parade. Her now grown up daughter was standing next to me. I had to ask about her experience and what she remembers. She said not much. She was the four-year-old.
At Hani's first Karate class last Monday, another Mom stuck around to watch the class. We said pleasantries to each other at first and introduced ourselves. Then half way through the class she asked if I was having chemotherapy. I said yes and she said she wished me all the best and hopes it passes quickly. I love it when people are so bold and comfortable that they can do that. Last night at dinner our waitress did the same thing. After paying our bill, she came over to me and knelt down by my chair. She came right out and asked me if I had cancer. Then she asked me what kind and if I was doing ok with the chemo. She told me her mom had cancer some time ago, that is why she knew what I was going through. She too wished me well and offered her support. I thanked her for coming over and she revealed the ambivalence that I am sure most people feel. She didn't want to bother me, she didn't want to upset me, she didn't know if it was ok to mention it. I am so glad she did and I told her so. In these instances where someone has felt courageous enough or curious enough to come up to me, I really appreciate their reaching out to me. I feel invisible enough when I go out. Either people completely ignore my current state and carry on as if nothing is up or they avoid contact all together because I am so obviously dealing with something serious right now. I realize that people are uncomfortable and most don't know what to say or do. I now know what I want in this situation. I really appreciate and feel encouraged by people who do make an effort to say something to me, or just make an effort to understand what I am going through. Of course everyone is different and some may feel completely the opposite of me. But that is my reaction to the advances from these well meaning people. The first time this happened was when I was in a retail store and the woman ringing me up looked directly at me and asked "how is the chemo going?". I was at first a bit stunned and then I just said "its ok, it's hard". "Well hang in there" she said, "sorry you have to go through this. Do you have many more treatments to go?" So I told her, and we talked for a minute. I left the store thinking that that exchange was so normal, grateful to have had that experience.
July 20th
I am down 7 chemotherapy treatments with only ONE TO GO! I feel that this is quite an accomplishment. Yesterday a man in the treatment room finished his last dose while I was there. M.J. and Judy were with me and M.J. wanted to take some shots for the scrapbook. We were wondering where all the nurses went and suddenly they came out from behind a wall, all carrying different colored pom-poms, singing some cheer and circling the man who just finished his last infusion. They presented him with a certificate and a hat with the initials of the oncology practice. It was all very cute. When I got there in the morning each patient dropped off a bag or plate or box of goodies at the nurses station. It was as if they were all students bring the teacher an apple. As the morning progressed, Alice, the head honcho of this group, started taking drink orders...water, juice, coffee, "margarita" anyone. After passing out the drinks she and another nurse went around with all the goodies asking all the patients and visitors if they wanted anything from the plate. I took a piece of Sees after my lunch. The whole scene was so funny. It was like being on an airplane with the flight attendants coming around with their carts, except all the passengers were hooked up to I.V.s and on a very different kind of trip!
As the infusions get started we are all given an assortment of pre-chemo cocktails. Depending on which drug we are getting, we are given various combinations to ward off side effects and allergic reactions. Various antiemetics, steroids, hydration and everyone get diphenhydramine, also know as Benadryl. Within an hour we are all asleep, turning us into a collective slumber party. I think it is Alice's attempt to keep us all very low maintenance. It is also nice to sleep away 2 hours of a 5 hour infusion. Yesterday the guy that had his last infusion kinda wrecked the serenity of it all when his snoring turned the place into a train ride. A couple of us couldn't help but crack up.
I think next time, which is my last time, I will make those guys one of my cakes. A triple tiered number...they deserve it. What a difference this place is than the last one!
On another front, I think I am getting some fuzz growing back on my head and my eyebrows are looking a little darker these days.
On to more technical matters...Dr. Shoba and I talked about when I get to have my port removed. She said I can get it taken out as soon as I am done with my chemo, although some people choose to leave it in for a few months. Why? I asked. She explained that if "it" comes back then the port is already in place so you are ready to go. The thought of having to have more chemo is too shocking to comprehend. Keeping it in seems more like living in the "what if" mode, which is definitely not my style. I asked her if I had to keep it and she said no. Dr. Gorey will take it out anytime I want. I met a woman last month who still had her port after a year. When I asked her why she said that she was afraid that if she took it out that the cancer would return. May I also mention that this woman is a nurse. Fear drives people to make some interesting choices. I say get the thing out! I don't want to carry this around with me. Once it is out the clot will go with it. I will have to take the Coumadin for an additional 6 weeks, then that is over too.
Radiation begins the end of August and right after that I will be having a minor surgery to have my ovaries removed. That's all I have to report on that matter.
I get hotflashes on my head. They only happen above my shoulders...strange! Luckily I have no hair and cool washcloths save the day...or night. Also, I have discovered the most awesome sleeping clothes from a company by the name of Wicking J. I discovered sleeping in my Patagonia capilene when I was nursing Hannah. The slight leaking after nursing at night was never a problem because I didn't feel moisture or cold. Now that I have these hot flashes and get sweaty at night I wear this wicking night shirt and pjs and they keep me so comfortable. Girls, file this away for another ten years...you'll thank me.
I have had some more pretty funny encounters with other "survivors" lately. A woman behind me in line at the Container Store struck up a conversation with me about Maizy, who was with me at the time, quietly lying down as I paid my bill. As I was about to go the woman leaned closer and said "I hope I am not being presumptuous, but I just wanted to mention, I am a 9 year survivor and I am doing great". I thanked her for telling me so. Then there was this kind of strange encounter at Costco. I was looking at their avocados and this woman came up to me and asked me "When did it happen?" I couldn't figure out what she was talking about. My first reaction was to look around and see if something just happened. I looked at her puzzled and said "what? what happened". She looked at me, cocked her head and gave me a rather pitiful smirk. "Do you mean when did I get diagnosed?" I said. "Yes, when did it happen" she replied. I told her in February. She then proceeded to tell me about her story. Then Adam called for me across the aisle. I had to go and I swear she wanted to follow me and continue talking. I thanked her for sharing but told her I had to get back to my family. I wished her well and went on my way. I have had a least half a dozen various encounters with people these past two weeks. Most positive, some dreadful. Adam said it reminds him of when I was pregnant and got all kinds of unsolicited advice and belly rubs. Sort of true.
I can tell the dex (the steroid I have to take for three days) is making me a little off...so I will end this now.
July 22
I have kept up with the emails, but the intimacy of my writing wanes. I struggle with not revealing everything or anything to extremely personal and having these updates be of some interest. Who am I writing them for? Does anyone care that today is a truly awful day? That I woke up with my head heavy with dull pain and my skin crawling? Amy called today, so perhaps I would mention it to her. But is it really of any point to send out an email announcing such a change in my physical and mental state? I am getting so depressed sitting home, barely able to do anything but sleep, stare at the ceiling fan or watch the Burch tree branches sway in the breeze. I desire more from myself, participation in the weekend’s events with my family say, or how about just reading a good book, but my current state of being doesn’t allow for it. I am itchy from the Taxol…nerves are tingling. I feel like I have little tiny electrodes on my body that go off with a charge every so often. I keep thinking about my vulnerability. I want to know what others dealing with cancer are thinking and feeling. I feel almost like I fit in now. I have been sufficiently hazed yet I am nowhere near done with this process. Radiation follows chemo (one more to go). Then I get my ovaries removed, then Arimadex. Then…what? How do you just go back to life after this? That is what I need to learn. That is why I want to go to the breast cancer group now. I think this is the only place I will be able to learn this…from the people who are doing it.
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