A lot has happened in the last 36 hours. I have a short period of time to write so I'll do my best to catch up on the latest.
I had an appointment yesterday, Wednesday, March 6, with my first oncologist. I have to say, I was very relaxed, calm and very "present." I have my expandable folder with me now at all my appointments. For those of you who don't know, it's imperative you bring your medical records with you to each and every single appointment you attend. I don't care how casual it might be, you must bring your stuff with you because there is simply no way to remember all that has happened and all the doc appointments, x-rays, MRI's, biopsies, blood draws, etc that have occurred since the beginning of this process. Then when the question is asked about your a copy of your pathology or do you have previous blood orders, etc, you can have it there and you won't have to try to remember to follow-up with getting that info back to the previous doctor you had just seen -- that is, if you can REMEMBER who you saw............Catch my drift? Confusing. You bet! And it happens way too quickly. So my point is, it's a NO BRAINER to have this with you. So thank goodness I had my stuff with me cuz I needed to provide my doc with other insurance information that would have taken me a bit to find had I not had it with me already. TAH-DAH... Done.
Anyway, the long and the short of it was getting my "plan of attack" with regard to Chemo. Well, to my horror, the plan I thought I was going to have had been changed. Now, my oncologist wanted me to begin Chemo by having it once every 2 weeks! And doing this for 8 treatments! Wow! Wow! Wow! Needless, to say, I went into what I now lovingly call: Dear in Headlight Zone. I was simply not on that same page. I asked if my tumors shrink in a very positive manner by responding very well to this "dense dose", would I have the opportunity to have maybe 6 treatments rather than 8. And he simply said, "NO."
Now, understand, my doc was not being rude, unempathetic, unsupportive, etc. He wants to get the most results with a very aggressive approach for the type of cancer I have. I have to say, it took the wind out of my sails. I was hoping that there could be some flexibility.
But more importantly, I was extremely worried how my body would be able to recover after each treatment. How would I stay "afloat" so-to-speak. How could I possibly hold my head up and breath in an upright position after the 2nd, 3rd, 4th, etc treatments? I thought this is going to chew me up and spit me out even though I am willing to go for it. Crazy, eh? Well, YEAH! Due to the size of my tumors, I'm considered higher risk. Nice. Still hard for me to hear that, but it's the truth. No kidding about this cancer guys. No kidding at all. But my logic kept on coming back around asking me those same questions? There must be a compromise somehow. This is too scary and intense. Of course I want to erradicate this cancer, but there is like I stated above, a grey area that must be there for me to be able to switch up the treatment if I'm responding well.... I know I'm not the expert, I'm going off my of INTUITION; my GUT. Something is not setting well with this. Ok. So we move on to setting up the appointment to begin and then to meet up with the nurse who will administer the chemo. Very nice and professional nursing staff. Top notch. But I left there, like I said with the wind out of my sails. So for those of you who heard from me via texting, I was rather robotic about it trying to put a positive light to it; but I also knew that today, Thursday, April 7, I would be meeting a 2nd oncologist for his opinion on my case. Also, to back up a bit, my 1st oncologist knew I would be meeting with this 2nd oncologist for my own "piece of mind." It was so nice to hear from my 1st oncologist that he supports whatever I decide -- that this treatment is purely about what is the best thing for me. I truly respect this doctor. He and his staff are amazing; but he's correct -- we, as patients, MUST do what is BEST for us and no one else. I think my problems in the past with docs was I never wanted to rock the boat. Well, that's gone out the window now. I must make a well-informed and well-educated decision that will affect me the rest of my life. Literally.
So today rolls around and Jim and I drove down to Scripps to meet Dr. Joel Bernstein. He on the 4th floor; my surgeon on the 6th floor. I had a follow-up appointment with Hyde for my post-op regarding my placement of the port in my chest.
In walks Dr. B and right away there is chemistry. What a gentle but strong spirit. Wow, what a presence. Right away he makes me feel so welcomed and relaxed. Funny thing, my BP was so low, I couldn't believe it. I wasn't all stressed out like I have been recently. That white coat syndrome has been alive and well with me lately! In the office I was at, he had some statues and stuffed animal head of BLACK LABS.........Well, well, well..... the man is a black lab lover like I am, so right there that was an ice-breaker big time. We had banter back and forth about the love for our guys, etc. Then we dove right into the matter at hand. He had his way of delivery for dealing with my overall medical history up to this point -- how did I come to be here -- with this cancer, with my life, with my family, etc. Once again, the whole mind, body, spirit -- loving this.
He found out I was already well-informed about what is going on with my cancer and that I have some specific goals I'm going to reach -- bilateral masectomy for one -- which he was rather surprised by, but not in a bad "oh, you can't possibly think that just yet" scenario. When he looks at me, he is looking into my soul. He is present and paying attention to my words and then making his notes. His empathetic side was very much like Dr. Hyde's. He's listening but what a sense of respect for what I feel I want and need. It made my heart just fill.
Continuing on with the exam, he had to examine my breasts and left axillary (armpit area). I'm so used to stripping off from the waist up now, it's simply no big deal for me. It's what I also lovingly refer to : slam and dunk time. I know, I have a beautiful way with words. LOL. Sorry I crack myself up sometimes. Sad to admit. Anyway.................. The good news was these aren't the largest tumors he's felt. He told me I wouldn't win any blue ribbons for their sizes. I had to laugh out loud on that one. Really did make me feel so much better! Crazy times, but it's the truth. But he is paying attention to their size. After the exam, back to the notepad and he made out his grid -- or plan of attack. Ok. for those of you who worked with me -- NO it wasn't any Matrix! You know what I'm talking about! Oh, the memories of the Matrix.... Yes, inside joke.
That's another story for another time if I need "material" for fill in.
His plan of attack is similar in that we hit this with chemo, we do the surgery, we possibly hit it with radiation and then we hit it with an estrogen blocker for at least 5 years. A lot of over simplification, but that's the root of it.
Now, he did say he did not agree with one of the chemo drugs that may have been used on me by my 1st oncologist. This particular drug is not the type of drug typically used for my type of cancer, so he wasn't sure what the reasoning behind it was -- he thinks it may be a mistake, but this 2nd doc knows all the up-to-date cutting edge drugs there are. He was not bad mouthing this other doc at all. He simply disagreed. He also wants 6 treatments and not 8 treatments; plus have treatments every 3 weeks rather than every 2.
He believes there is plenty of room for flexibility especially if you see major transformation/improvement in the tumor sizes or NON-improvement in the tumor sizes. He believes that we should be prepared to change up as we (meaning me too) see fit. I'm very much included in the decision process, which is what I need.
I'm not saying that I poo-poo each and every idea, because I'm NOT a doc, but I still have compelling questions that I want and need addressed. First and foremost, since I have been so healthy and active my entire life, I haven't taken barely any kind of med at all my entire life. I'm very drug sensitive. I have allergies to many drugs with the most recent one NOW being Lidocaine. During my biopsy, I had stated in an early blog my heart became very erradic and it became an "oh shit" moment for the doc doing the biopsy, but he kept his cool and wits about himself. Nothing occurred. It was superficial in nature and it passed, but I have to be very, very proactive in maintaining open communication with my docs and reminding them of my sensitivities. I'm very vocal about this. I don't want to be poisoned accidentally because I ommitted to let them know. And people are busy and have more than me as a patient, so I have to give gentle reminders of my issues. (ITH-YOUSSSSS). Inside joke for a few that know me.
So we laid our cards on the table and I was able to, without hesitation I might add, select this 2nd doctor, Dr. Joel Bernstein to be my oncologist. I am so satisfied and relieved with this decision. I have great relief with my decision to continue my care with this doc down at Scripps Medical Center. Yes, I have to drive 1 hour but had I lived up in Humboldt County still I would be driving at least 5.5 hours to SF for treatments. So it's worth it to me and to my family. After I let him know it was a GO for me, we had to get moving with different types of preventative measures so I could begin my chemo. Oh, yes, I'm beginning tomorrow morning at 9 am. Yes, it's fast, but not really. It's been almost a month ago that I found out I had cancer. So I must get moving now. Let's get this show on the road and let's make some progress in reducing these tumors. Let's be proactive. I have some prescriptions that I wlll have on hand for the just-in-case such as antibiotics, if I should become ill. When you're on Chemo, you can pick up viruses very easily; very susceptible to many things. I just have to be selective where I go and what I touch, and where I breathe. I will be mindful not to hug little children. Now, that is going to kill me. I'm a big hugger! That's my signature. I'm a hugger. I love people -- for the most part! LOL. It's in my blood to hug and love children. I love the little pea-buttons big time. So I hope all understand why I'm a bit distant. I can come up with the "shadow" hugging I've been seeing that schools have incorporated into their daily lives. In my case it will work and we can make it funny, lovable and happy; but inside I know I will ache for that part that is me as a greeting or as a good-bye. I thnk that's why I got along with so many in Italy, France and Russia -- they all air kiss cheeks while holding your hand. This too shall pass, right?
So once again, I'm asking for prayers, good energy and positive thoughts. I have been feeling the amazing love. I'm not just saying this. I actually FEEL the LOVE coming to me. It's a very special gift that is being given to me and I am so very open to this. I think that is why I'm so strong right now. I'm not a warrior. As you have read, I'm a human being with the ups and downs of this crazy path. Yes, I'm nervous. I'm wondering a lot of things about how its going to feel as it pulses through my veins; is it going to burn at all? Will I feel as it attacks?
Life has changed and it's changing everyday. The difference is I HAVE NO CONTROL. NONE. NO CONTROL. But I do actually -- I do get to make good choices. I get to do a lot of things still. But life is different. At least now I'm at the point where I am open to the change against my will factors. I still will ask those difficult questions. I am getting more educated daily. And I still am ME.
Please don't forget that. I AM ME. I still laugh loud and long; I still care about others and their daily lives, because life does move on. And thank GOD it does move forward. Life is a blessing. Not just the words. It is my blessing. I am very lucky and once again, I thank all of you for your constant support; I thank the love of my life, Jim. I thank my amazingly brilliant daughters, Ashley and Amy and I thank my extended family -- you all know who you are. WE may not be blood, but it doesn't matter. You are family to me always!
Yup, my cup's half full! Ciao, Ciao
