Archive | July, 2009

Grateful for . . .

16 Jul

Lisa&Garrett_07-06-09I know I have already posted this picture, but I just love it and so I am posting it again. If you are new to my blog, there is a video on here of me and this little guy – my nephew Garrett. Today I got to see my other nephew Matthew. I only got to see him for dinner, but it was great to see him. He is a delight. He spent the day with my parents – went to the zoo and saw a movie – and I am told, that he asked my Dad to explain one of the laws of physics (my Dad is quite knowledgeable in math, physics and of course, music). Here is Matthew  having fun with my Mom, and another picture of him below. He is such a handsome boy. I didn’t get to see him for long, it was short, but so great to be able to see him. I also got to see my brother Steve for a little while when he came to pick up his boy. A very nice end to the work day.

IMG_2958 I wish I could have tagged along with them at the zoo or the movie, but, I had to finish up a lot of tasks before today’s chemo round – MY LAST ONE!!! Woo-hoo!  I can’t say it will be a ton of fun, but it won’t be bad. I have company. I have two dear friends taking shifts (the babysitting I require). One will pick me up at 7:30 and take me to chemo and stay with me until 1:30 when my other friend arrives. She will stay with me until I am done and take me home (which is sometime between 5 and 6, although lately pretty close to 5, which is much better). I am so grateful for their help. I know it can’t be the most pleasant experience to hang out with me while I am attached to an IV all day and having to watch for reactions that I might have and flag down my nurse stat. But, somehow there is fun involved. Thanks to both, I spend far more time laughing than I would have ever imagined. Thank you so much!

And I am so grateful for my friends and family who stay with me during the days after chemo (I don’t know how I would have made it through the past chemo weekends without you, or this one coming up). And I am so grateful for my friends who have taken me to and from doctors appointments, fixed my cell phone, helped me find a wig before my hair all fell out! (this was sooo key for me :)), grocery shopped, understood when I have lost my cool, brought food, sent cards and emails, stayed with me when I just needed company and called for no reason, and I am grateful for the friend who dropped out of the sky and landed in my lap recently – you know who you are. You have all made each day so much easier for me. There is no way that I could have come this far or have done this well with out your help. I am getting well because of your help.  I feel truly, truly blessed and loved. Thank you from the bottom of my heart.

My last chemo is in a few hours. True to form, it is now 5:21 am and I have not slept yet. I am doubtful that I will sleep much before my friend shows up to take me to chemo in just a few hours 🙂  But, it is okay. It is from the steroids I take the day prior to chemo. A normal side affect and all part of getting well. I will probably doze off some tomorrow during the treatment. And, I will certainly get some sleep over the weekend.

Please keep me in your thoughts and prayers today.

My nephew Matthew and his puppy Freddy.

My nephew Matthew and his puppy Freddy.

LAST CHEMO IS TODAY!

16 Jul

Today is my last chemo. I can’t wait to be done. I am definitely weaker now and that is frustrating. But, considering everything, I am doing really great. I am having a great response to the chemo. My cancer has shrunk significantly.  So, all is good. And, even though I am pretty tired, I have worked full time (except for the actual days of chemo and the weekend following chemo). With each round so far, I have gone back to work the next day (on Friday) and met with clients and put in a full day. And, with most chemo rounds, I was working from home – laptop in bed – on Monday. I would work a little bit, rest a little bit, work a little bit and rest a little bit.  Fortunately, my work doesn’t require much physically. I am writing mostly. But, this last chemo round was not so easy.  I did get anemic and wow, I could really feel that.  I still feel it, although it feels as though I have improved in that regard (I will know when I see my blood work tomorrow morning).

What a crazy ride this has been. From incompetent doctors and a near death experience to the most amazing people showing up in my life in ways I could not have imagined they would, helping me in ways that I would not have expected. I don’t know what to say, except that I am so incredibly grateful for the latter part of course, not the incompetent doctors or the near death experience) 🙂 I am grateful for the incredible support of my family, friends, and new friends and I am so grateful for having only one more chemo left. (If you have read prior posts, you will see that Dr. Gloom had told me that I might need more chemo after surgery. But, I have since met with a specialist who specializes in my specific type of breast cancer and she has made it very clear that I will not receive more chemo).  My current oncologist is a general oncologist (not a breast cancer oncologist).  He deals with all types of cancer and just doesn’t really understand the treatment protocol for my type of breast cancer. Thankfully he follows whatever UCLA says he should do. But, in the interim he comes up with some wacky comments and doesn’t really seem to know how to filter what he is saying (as in he ought to really know what he is talking about before he talks . . . this is the same guy who argued with me about how may chemo rounds I had received . . . aaargh).

Anyway, this one is my last. So grateful for that.

I am bracing myself for the possibility that the sixth round may be as difficult as the fifth and, or, I suppose, could be worse. But, it could also be a lot easier (which is what I am really hoping and even expecting – why not? My third and fourth chemos were by far easier than my first two).  In either case, I am prepared and will recover and do well.

Okay, this post seems a little whinier than most. I am still going to post it.  But, I will do a follow up that is less whiny 🙂

Thank you so much for your continued prayers and support. I so greatly appreciate it!

Done in by the weekend :)

13 Jul

The Orange County Fair gig was a success. I had a great time. But, I am really paying for it today. Pretty weak today.

Now it is all about gearing up for my next chemo round – this Thursday. I have to arrange for my caretakers (I am working on that now), get all of the medications picked up and lined up, shop for my chemo food (I have a different diet that I follow for the week after chemo), keep track of my water intake – down to the ounce (I was told to drink 2 – 4 liters of water per day several days before chemo and for the week after chemo. So, I make sure that I drink 4 liters of water each day now).

My last chemo hit earlier and lasted longer. So I am planning for a longer coverage this time, just to be safe. Normally I have someone here 24/7 from Friday evening through Monday am. But, this time I am planning on having someone here  from Thursday through Tuesday. There are shifts that my friends and family take. It is both weird and wonderful. Weird to have to rely on so many people so much and wonderful to have so many people that I can rely on. 

Still, hopefully this round will be no worse than last. Actually, I am hoping, that maybe it won’t be as bad as the last round. Okay, I am planning on it not being as bad as the last one. But, just in case, I will have people here to take care of me.

I can’t believe this Thursday is my last chemo. Wow, time flies when you’re feeling under the weather 🙂 It did fly by though. Really.

The heat was not much help last time. I don’t know what it is about the heat, but when it is warm I can get pretty upside down pretty fast. That was definitely an issue with my last chemo. So I will be laying next to my air conditioner this weekend.

Well, I am pretty beat. Moving very slowly today. I have a kind of vertigo going on. It is from the lower red blood cell count I guess. And, it is keeping me horizontal for the rest of the day. So, I am forced into getting some rest 🙂 I guess that is a good thing.

"Huge Blues" . . . the band, not my state of mind :)

11 Jul

Huge Blues BaldThis is a picture of our blues band, “Huge Blues”. From left to right: Tim lewis – vocals and guitar, Brett Caplinger – harmonica, Paul Hughes – guitar, center, me – stand up bass and vocals.  The whole band is bald now 🙂  Paul shaved his head so we would all be bald 🙂 Thank you for doing that Paul, very sweet. My brother Steve also shaved his head. He did it on the same day that I did. He lives in San Diego and sent me a picture from his cell phone as soon as he had done it. I will post a picture of the two of us up here soon.

Huge Blues is playing at the Orange County Fair tomorrow at 3:15 on the main stage. It should be fun. Hopefully it will not be too hot. The heat is not my friend these days. But, it is a short gig, so it should be fine.

Back when I had hair . . .

11 Jul

DSCN2253This photo was taken about a week and a half after my first chemo. It was Easter. My brother and sister-in-law made dinner for my family. It was a very special day. Marcella, my sister-in-law, made organic food that was just great. And, I of course loved every minute of playing with my nephew Garrett. He was quite taken with my dog Molly.

A couple of weeks after this photo was taken my hair started going. It was pretty unpleasant. I had no idea the relief I would feel when I finally just shaved it off. It was so much better than watching it fall out all over the place. (Btw, not long after my hair went, so did my boyfriend 🙂 – hey, better to find out what someone is made of early on, right? When times get tough, the tough get going? Well, in his case, when times got tough, the weak took to running 🙂 Like I said, better off knowing what a person is made of, capable of, not capable of, etc. (The thing is, I think I look pretty good bald) 🙂

So, it is another sleepless night tonight. It is so strange, I am so tired, but I just can’t sleep. Weird. I know I need rest to get well. But, I can’t seem to get to sleep and when I do get to sleep I don’t stay asleep for very long.

Oh well. It will get better. Today (Saturday) I may go to the beach for a little bit. There is a dog surfing event at dog beach in Huntington Beach. I think it would be fun to see dogs surf. We’ll see. If I can get some sleep, then maybe I will be up for going.

Sunday I am playing at the Orange County Fair with my blues group. We will be playing at 3:15 on the main stage (that white round stage). Maybe I will see some of you there.

Thank you to everyone for your support and prayers. I am so grateful for your help, positive thoughts, encouragement, companionship and prayers.

Great News!!!

8 Jul

Lisa and gman

This is me and my nephew Garrett. I liked the photo from my previous post so much that I thought another was in order 🙂

Wow, what a difference an oncologist makes. Today I saw a breast cancer surgical oncologist up at UCLA. I had previously consulted with this doctor as a second opinion before deciding on a course of treatment. I went back to her today because I just haven’t felt right about what my current oncologist has been telling me and I really wanted her to review my case. It went exceptionally well. I could not have asked for better news. She told me I was having a great response to the chemo and that I would not need additional chemo after surgery.

As you may know I have not had much confidence in my oncologists to date. I fired the first one after he told me NOT to take the required pre-medications the day before chemo (this little blunder nearly killed me, caused me to go into anaphylactic shock, stopped breathing, very scary). The second oncologist, while at least could not be accused of trying to kill me, could not be more inattentive. Each meeting I have had with him he has made it painfully clear that he has not bothered to read my file at all. For example, in our very first meeting he said: “So you’re going to have a lumpectomy?” (If he had read my file he would know that I am having a bilateral mastectomy, that I do not have the option of a lumpectomy).  And, on our second meeting, he argued with  me about the number of chemos I had completed (he said two, it had actually been four) . . . as if I would not know how many. But, he stood there and ever so arrogantly told me over and over that I was wrong, that I had only had two chemos.

So, the final straw for me with oncologist number two was when he recently told me that I would probably have to have additional chemo after surgery. Naturally I was pretty disappointed in hearing this. But, mostly it just did not comport with what I had read in my own research. With the kind of cancer I have there is a pretty specific course of treatment. And, the chemo they use is pretty strong – one drug in particular called Taxotere. It is considered sort of the last line of defense in chemo – if nothing else works, then this one will. Well, because my cancer is of the aggressive type they start you out with this drug.

The course of treatment for my kind of cancer is to have six rounds of chemo and weekly Herceptin treatments (Herceptin is the monoclonal anti-body that is sort of the seek and destroy drug for my cancer – it is truly amazing. Herceptin was developed by Dr. Slamon at UCLA. The specialist that I saw today works side by side with Dr. Slamon). Once the six rounds of chemo are completed, then I will continue the Herceptin for a year. This protocal is pretty well defined and I had never heard of additional chemo being added to the equation. Yet my oncologist has been telling me that I will probably have to have more chemo after surgery. He has told me other horror stories (not sure why) but not worth retelling here.

Anyway, the point is, many things were not right. So, I saw the doctor up at UCLA today and she said that my oncologist was on glue. She said I should never have more chemo. She said “Ask him to point to one clinical study that says you should have more than six rounds of chemo. There isn’t one.”  She had quite a few more choice words for him. She also told me to get out of there, that oncologist number one nearly killed me and oncologist number two clearly does not understand my treatment or how Herceptin works.

Well, it feels great to know that I do not have to have more chemo after round six. And, it feels great to know that my instincts were right. So this next round really is my last round. Wow. I am so happy and so exhausted (the past several  weeks, okay months, with doctors gloom and doom have taken their toll and now with such a weight having been lifted, I think I can finally get some sleep).

So, I will be switching to UCLA at some point to have Dr. Hurvitz be my oncologist. I don’t know exactly when I will switch, perhaps after my surgery. I am not sure yet about the timing of it. The doctor I saw today said I could either go forward with the surgery at Hoag or at UCLA. But, either way, I will have my last chemo on July 16th!

So, things are looking up.

I am grateful for . . .

6 Jul

Lisa&Garrett_07-06-09This is me with my nephew Garrett. He is such a delight. We had a lot of fun yesterday. He loves to play peek-a-boo. I am so grateful for him and for his parents.

I am grateful for for my parents, family and friends, mint tea, the love that surrounds me, the neighbor children who walk my dog each morning Monday through Friday, the ocean, that I am physically strong,  new friends and old friends, air conditioning, the support that comes from unexpected places and for not caring that I am bald (I know so many women who are terribly distraught over the loss of their hair during chemo and can not go anywhere without a wig – I am SO grateful for not feeling that way – I feel very lucky that it doesn’t bother me to go out in public without hair – I hate wearing a wig. I know it isn’t a choice either, it either bothers you to be seen bald or it does not. I am so glad that it doesn’t bother me. Cancer can be so isolating and I am just so grateful that I don’t have that limitation of not being able to go out without a wig. It would be awful). Besides, it’s kind of cute that my 11 month old nephew has a lot more hair than me 🙂

Me and my nephew

6 Jul

Never thought he’d have more hair than me 🙂 Sorry this is sideways, I can’t seem to get it right side up.

Sunday – Past Saturday's Blues

5 Jul

Yesterday was rough. I barely left my house. Not good. If it weren’t for my dog I guess I would not have gone outside at all. 🙂 But, today I will change all of that. No more moping around. I woke up yesterday at 5:00 am – which is pretty normal for me these days.  I decided (big mistake) to do some research on lymphedema. I had a meeting with my surgeon this past Thursday. She was very rushed and basically dumped a bunch of information and left. I had come in with questions about my upcoming surgery but was not able ask her any of my questions.  And, then the new information generated new questions. But, there was no time. She was hours behind schedule when I arrived for my appointment.  And, she had surgery scheduled for that afternoon. She looked stressed. I definitely do not want to be the patient that she operates on after a hurried, stressful day of seeing patients. No thanks.

Anyway, one of the little bombshells she dropped was that I would need to wear a compression sleeve for a couple of months to help prevent lymphedema. This is the first I had ever heard of this. And there were just so many other things that were relayed, my head was spinning.

So, it just was not a good meeting and it left me with more uncertainty than ever.

It is really odd how they impart information.  Everything that she told me on Thursday could have been relayed months ago.  And, had I received this information months ago, I would have had more time to research my options. Yet, I am only getting this information now, just a month or so before my surgery. I can’t go forward with surgery until I have my questions resolved. And now, there are so many.  So it is a mad rush to get a second opinion and to possibly even have the surgery somewhere else.  I was just very dissappointed in our meeting and it really left me feeling as though I was just one of the cattle being run through the line.

I really do not get why I did not have this information months ago. Now I feel so pressured for time. I think I am a difficult patient. They see me walk in with my notebook full of questions and well, they don’t really want to deal with that I guess. But, this is my body,  and I am stuck with it whether it is trying to kill me or not. And, I need to know what they are going to do to me and what the longterm implications are of everything. So, yeah, I am a pain in the ass.

So, I was told that because of the surgery and the radiation treatment that I will be at a high risk of lymphedema. Lymphedema is a chronic swelling that can occur in your arms after having lymph nodes removed. It results from your lymphatic system being unable to drain fluids properly. As a result, fluids can build up and swelling results.  Also, you can get infections, your skin can become hard permanently and well, it is just not a good thing. And, there is no cure for it once you develop it. So the key is to not get it.

The risk of this condition is further increased if you have radiation. It is (second to the fear of having a recurrence of cancer) the biggest fear that I have.  I would not be able to play the bass if I were to get this condition. And, now I am told that playing the bass could actually increase the likelihood of getting this condition. So I found myself asking my doctor if I would be able to play the bass again and she would not directlly answer that . . . which I guess is my answer. She would only say that I would not want to do anything to increase my risk of getting lymphedema.

So that is the news that I have been mourning. It feels like a death to me. I know it is not, but it feels that way somehow. I can’t get my head around that one. And, now for the first time, I am just really angry about having cancer. Angry that I didn’t discover it sooner.

I just am not willing to give up on playing and I am not willing to accept my doctor’s statistics on my likelihood of developing lymphedema. I am not her average patient. Most of her breast cancer patients are overweight. She told me when we first met that most patients gain 20 pounds during their treatment. She said that one of the drugs in chemo causes you to crave carbs. I don’t quite understand that. But, I did not gain weight during the chemo., not yet anyway. I know that lymphedema appears to be more likely to occur in patients who are overweight. So, keeping my weight down will probably be help. I am not overweight. But, I am going to drop some weight all the same before surgery. I have been too laxed in getting exercise. This last chemo was so much more difficult. Between that and the heat outside, i just didn’t get much exercise in.  But, no excuses now.

Well, a trip to UCLA is in order. And, I am really thinking that I may want to switch to UCLA for treatment. I don’t even know if that is possible at this point. But, I am going to see what I can find out on Monday. I at least need to get  back up there to be seen by the specialist that I consulted with in April. She was amazing. I wish she could be my doctor. We’ll see.

Whatever happens, I just have to get my questions answered and I need to feel confident in my doctors. Which at this point I am not.

Thinking of going public . . .

4 Jul

So I have been giving some thought to making my diagnosis public.  I haven’t because of my business and the fear of how knowledge of my having cancer might affect my ability to draw clients. But, I am thinking that once I am done with chemo that I might go ahead and let it out. It has been quite burdensome to have to keep it a secret. I prefer to go bald, but can’t do that when meeting with a client. So I wear a wig. The wig looks amazing, you would never know it is a wig. But, I hate wearing it. It is hot, uncomfortable and it just isn’t me.

I will be off from work for a couple of months after I have surgery. This all happens to fall within our non-busy season, so that is good. So perhaps I will wait until I get done with the surgery. I don’t know. At that point I will be done with chemo and surgery and only have radiation left. The radiation will last 6 weeks, will be daily, but will only be about ten minutes each day (so I am told). The radiation affects everyone differently. So, I am not entirely sure what to expect with that. But, hopefully I will tolerate it well.

Oh, and when I say “go public”, I really just mean (assuming that I decide to do this) that I will not hide it. I think it will be less of an issue for my business once I am out of the chemo.

I guess I will just wait and see how it goes.