How do I express the chaos? I wake up, feed the boys, make a smoothie, dress myself, dress the boys, drop them at school, drive to chino, work, leave, pick up boys, go to scheduled sports/or not, home, home work, dinner, shower, bed. What is missing from that rant? fun, exercise, meditation, yoga, reading, blogging, cleaning, dating, BIKING. Then of course there is that new category that must be addressed....the CANCER time...it supersedes other parts of the list because it is IMPORTANT. Then of course there is the other unexpected life stuff that is not on the list it kind of comes out of the blue.........something like Corbin breaking his arm at the skatepark.
That is correct Corbin in an attempt to master a "nose manual" on his scooter, managed to fall in such a way that he broke his radius and ulna. Now this is not my first child with broken bones as Mason fractured his wrist in August last year. Mason's break was a little more severe, but I was not "blogging" much then so the pseudo real time details are not available. So Sunday 2/12 I get a call from Steve saying I think Corbin broke his arm we are heading to the ER. Really??? I had spent all Friday afternoon at our lovely YRMC. Is it really necessary for me to spend a Sunday there on the same week? I show up and Corbin is in a wheel chair and he has worked himself up into a frenzy. Corbin loves Dr.'s and medical stuff just like I do. He has a pretty big knot on his arm and in quite a bit of pain. Mind you he broke it and Steve probably had him at the ER 20 minutes later...it might have been less. So poor Corbin is crying with Mason chiming in occasionally "I broke my are worse then that", apparently brothers don't let up when the injuries don't seem to be too severe. Corbin is so upset he won't let the nurse take his temperature orally. He can be a bit dramatic, so she puts it under his arm......totally breaking the rules, but it's not like he has the flu. Then he gets wheeled into the back and we wait. A tech comes from radiology and takes him back for an x-ray. He can barely move his arm for the x-ray, he whimpers through the entire thing. We are back in the room and we wait for the Dr. to read the results. It is broken, but it does not need to be "re-set". This means all they do is splint it up and refer you to an orthopedic specialist for a hard cast later in the week. Super fun way to spend a Sunday.
Great! at the time I get this news I figure what else do I need to do this week? Oh yeah schedule my first chemo, get a cast on Corbin, and the regular crap I do every day. The question is how much can you pile on a plate? How far do you bend the branch? How many needles break the camels back (that one may not make sense)? The answer is "IT WILL TAKE MORE THEN THIS".
I found out on Monday that Corbin's appointment would be Thursday. I was hoping (sort of) to start chemo on Thursday. Then I spoke with my oncologist and I asked her if it would be okay to start on Monday 2/20. I don't want to hurt my chemo odds by waiting to long, but really what is 4 more days at this point? I think it is 4 more smoothies and supplements to support my body and maybe I will be able to squeeze in a bike ride before the chemo show begins. I also need to have Corbin in a hard cast. So I breathe and let it all fall into place. Dr. Lindquist recommends a chemo that might need some extra approval Monday is going to be a good start. Kate is on board to take me for day 1 and Jen is on board for day 2 and slowly it is all coming into focus.
I will start chemo on Monday 2/20. My regiment will be a combination of etoposide and sysplatin given on day 1 and 2 of a 21 day cycle. In English that means I will be tapped in for approx 5 hours on Monday and Tuesday of the 1st week, with week 2 and 3 off. Then we will repeat the cycle 4 times. We will monitor how my cancer responds at that point and go from there. This regiment seems pretty manageable. I may need a neulasta shot on Wednesday's following treatment to boost my immune system but I will be able to have that administered in P.V.
So that IS IT after searching far and wide for the right Doc's and the drugs that I think are best for me this is where I have arrived. I don't know what the side effects will be. Probably much like my last treatment. Although all the natural herb and supplements will better support my body through this journey. I am sure I will know by next week.
Today is kind of a bitter sweet day, I received the confirmation for my Whiskey Off Road Race entry. I was able to squeeze in a quick hike at the Butte today but am not able to ride until my port heals up. I don't know if my body will be able to ride the race at the end of April..........I guess there is so much that is undetermined, and I can't get over how quickly things can change. Tomorrow I go for some kind of heart test to ensure that it has not been damaged by the prior chemotherapy. I guess that is important before I start treatment again.
I need to keep moving forward, loving, grateful, and blessed with so much goodness surrounding me and my family.
Drink water and breathe................
Wednesday, February 15, 2012
Monday, February 13, 2012
Sedona success!!!
Life is always a whirlwind in my world. Cancer just throws more stuff into the mix, some really unpleasant and some really great. For all of us life continues to go on, until it doesn't. So I am a motivated metastatic cancer patient.
The good news is that I have decided on a doctor, Dr. Lindquist was the fit I was looking for she is caring, hopeful, and super smart. She understands the specific nature of MY disease. I met with her on Tuesday 2/7 for approximately half an hour. We talked of clinical trials, she wanted to contact her colleagues to present my case to see what they would suggest prior to a final recommendation. This makes sense to me. Gather as much information as possible, then make a choice. While waiting to here from all the who's who in the breast cancer world it is time to prepare for treatment. Dr. Lindquist orders a port, some heart test, and a TON of blood work.
So Gina, my oh so amazing driver for the day gets to watch me fill like 8 tubes of blood. I start of like a champ thinking this is going be just a few tubes. I talk and talk, and then I watch her keep reaching for tubes and I see how many she has left to go. Then my ears start to ring, my vision gets blurry I am cold and clammy. Brenda the plebotomist calls over a nurse, just in case I faint. The new onc office is kind of crowded, there are 2 women waiting to have their blood drawn watching my drama unfold. It feels like there are people everywhere nothing like making a GREAT first impression. I fill all the tubes, staying conscious the entire time, it takes FOREVER. When I finally return to a normal state, I make my way to Richard the scheduler and I am booked to have a port placed at the YRMC Cath lab in Prescott Friday 2/10. Gina and I leave the appointment much closer to a plan and I feel good about the progress.
Thankfully Jerome is strategically located between here and Sedona. We stop at this little restaurant called Quince for dinner. I had the best Ahi tacos, loaded with pomegranate, mango and jalapenos. Spending the day with Gina was just what the Dr. ordered, it takes a special person to walk by your side on a day like this and G well I just love you. Thanks for being there for me.
For two days I return to work, like a normal person.
Friday is procedure day. I wake up take the boys to school, come home, shower, do some laundry and again drink my saliva until noon. Jen is my chariot driver for phase one, she is also my go to for the boys. The hospital was kind enough to warn me ahead of time that they are often behind schedule. This confuses me, why not just schedule me later? This new cath/lab port placement fills me with a little anxiety. What is light sedation, is it like light beer? I go back for pre-op and wouldn't you know I have a super attractive male nurse. Great that will make me relax. Michael does all the pre-op questions, he thinks I am a nurse because I have got this dance down. Then I let him in on the fact that I don't like needles. A gal comes in and draws my blood for some routine tests. He wisely notices my distress and punts my IV placement to Anita the Needle Ninja. Anita strolls in and she is no nonsense. She has arrived on the scene to place an IV and she does it with absolute calm and authority in her voice. The authoritative tone is what froze me to the bed. Her physique reminded me of Olive Oyl from Popeye and she had this beret on and here lips were stained deep maroon. Anita was not a force to be reckoned with so I laid there prone no whimpering or whining. First a little local, then tube placement in vein, followed by tons of tape to keep tube in place....then the icy saline drip, IV accomplished. Why can't I get used to that? We are on our way. Now for the next part, what the hell are the drugs going to do to me? They decide it is in my best interest if I take a couple of Valiums prior to the procedure. Okay if you insist. Jen gets to visit with me after the IV until they wheel me back.
The joy about having a procedure in your home town is that you run into tons of people you know. Jamie wheels me back and we are all chatting about all kinds of stuff. I remember getting names of the other nurses Regan, Kimberly, Cheryl and of course Dr. McNaughty (McNotten), I named him naughty just so I could remember. So I am totally chatting it up with the nurses, and then there is this gap. Regan tells me I nodded off for about 5 minutes, I wake up to feel Dr. suturing my skin. I could feel the tugging, and I didn't care. I just laid there not to concerned . I think I may have gotten off the operating table and got back into the hospital bed on my own. Then they wheeled me back to post-op. Typing about it today it feels a little faint in my memory, but at the time I felt amazing clear headed. Quite possibly one of the craziest things I have ever experienced medically. My friend Anessa comes to pick me up, we stop and get me a burrito as I was starving. Again I feel totally FINE, and I can't get over it. I am able to walk, I am not really sore. This was way better then my 1st port placement, that was so awful I felt like I was hit by a baseball bat. My theory is that surgeons may be more gentle when you are not under general anesthesia.
I am so much closer to treatment.
There is soooo much more, alas it is way late.
Drink water and breathe
The good news is that I have decided on a doctor, Dr. Lindquist was the fit I was looking for she is caring, hopeful, and super smart. She understands the specific nature of MY disease. I met with her on Tuesday 2/7 for approximately half an hour. We talked of clinical trials, she wanted to contact her colleagues to present my case to see what they would suggest prior to a final recommendation. This makes sense to me. Gather as much information as possible, then make a choice. While waiting to here from all the who's who in the breast cancer world it is time to prepare for treatment. Dr. Lindquist orders a port, some heart test, and a TON of blood work.
So Gina, my oh so amazing driver for the day gets to watch me fill like 8 tubes of blood. I start of like a champ thinking this is going be just a few tubes. I talk and talk, and then I watch her keep reaching for tubes and I see how many she has left to go. Then my ears start to ring, my vision gets blurry I am cold and clammy. Brenda the plebotomist calls over a nurse, just in case I faint. The new onc office is kind of crowded, there are 2 women waiting to have their blood drawn watching my drama unfold. It feels like there are people everywhere nothing like making a GREAT first impression. I fill all the tubes, staying conscious the entire time, it takes FOREVER. When I finally return to a normal state, I make my way to Richard the scheduler and I am booked to have a port placed at the YRMC Cath lab in Prescott Friday 2/10. Gina and I leave the appointment much closer to a plan and I feel good about the progress.
Thankfully Jerome is strategically located between here and Sedona. We stop at this little restaurant called Quince for dinner. I had the best Ahi tacos, loaded with pomegranate, mango and jalapenos. Spending the day with Gina was just what the Dr. ordered, it takes a special person to walk by your side on a day like this and G well I just love you. Thanks for being there for me.
For two days I return to work, like a normal person.
Friday is procedure day. I wake up take the boys to school, come home, shower, do some laundry and again drink my saliva until noon. Jen is my chariot driver for phase one, she is also my go to for the boys. The hospital was kind enough to warn me ahead of time that they are often behind schedule. This confuses me, why not just schedule me later? This new cath/lab port placement fills me with a little anxiety. What is light sedation, is it like light beer? I go back for pre-op and wouldn't you know I have a super attractive male nurse. Great that will make me relax. Michael does all the pre-op questions, he thinks I am a nurse because I have got this dance down. Then I let him in on the fact that I don't like needles. A gal comes in and draws my blood for some routine tests. He wisely notices my distress and punts my IV placement to Anita the Needle Ninja. Anita strolls in and she is no nonsense. She has arrived on the scene to place an IV and she does it with absolute calm and authority in her voice. The authoritative tone is what froze me to the bed. Her physique reminded me of Olive Oyl from Popeye and she had this beret on and here lips were stained deep maroon. Anita was not a force to be reckoned with so I laid there prone no whimpering or whining. First a little local, then tube placement in vein, followed by tons of tape to keep tube in place....then the icy saline drip, IV accomplished. Why can't I get used to that? We are on our way. Now for the next part, what the hell are the drugs going to do to me? They decide it is in my best interest if I take a couple of Valiums prior to the procedure. Okay if you insist. Jen gets to visit with me after the IV until they wheel me back.
The joy about having a procedure in your home town is that you run into tons of people you know. Jamie wheels me back and we are all chatting about all kinds of stuff. I remember getting names of the other nurses Regan, Kimberly, Cheryl and of course Dr. McNaughty (McNotten), I named him naughty just so I could remember. So I am totally chatting it up with the nurses, and then there is this gap. Regan tells me I nodded off for about 5 minutes, I wake up to feel Dr. suturing my skin. I could feel the tugging, and I didn't care. I just laid there not to concerned . I think I may have gotten off the operating table and got back into the hospital bed on my own. Then they wheeled me back to post-op. Typing about it today it feels a little faint in my memory, but at the time I felt amazing clear headed. Quite possibly one of the craziest things I have ever experienced medically. My friend Anessa comes to pick me up, we stop and get me a burrito as I was starving. Again I feel totally FINE, and I can't get over it. I am able to walk, I am not really sore. This was way better then my 1st port placement, that was so awful I felt like I was hit by a baseball bat. My theory is that surgeons may be more gentle when you are not under general anesthesia.
I am so much closer to treatment.
There is soooo much more, alas it is way late.
Drink water and breathe
Monday, February 6, 2012
How many long days?????
Due to the unpleasant and painfully honest nature of my posts I would like to share two extraordinary positive facts about my cancer experience today. I had a very knowledgeable doctor congratulate me on effectively eradicating ovarian cancer from my life. Apparently I am one lucky lady to have "caught" that cancer in time so as not to worry about a relapse. Thank you breast cancer I would never had found that mass on my ovaries if it wasn't for you! The next dose of positive new came in the form of a voice mail when I got home Dr. Boresh's office called and...my brain MRI was all clear.......no grey matter jokes here please as cancer is a very serious business. I am relieved why? In my ordinary mind it feels like less is better. I have all this pain in my neck the last thing I need is a tumor in my brain messing with my cognitive ability. So that is the good news portion of this blog please enjoy and read no further if you don't want to here some of the less then pleasant details.
It was yet ANOTHER day of TEARS. How is my body able to support all this damn crying? We left p-town around 7:30 ish. I needed to be in Tucson at 12:30. The 1st set of tears started rolling around 7:40 and have yet to really stop. That was AM and now it is LATE PM this is getting old. I am exhausted but don't know if I can sleep.
Triple Negative Breast Cancer is the bad one in the bunch and those are the cards that I was dealt. Dr. Livingston seemed to knowledgable about this disease, he also was very compassionate and thorough. He spent a little over an hour examining me and talking to me. There were some harder parts like progression of disease into other parts of my body that would cause more then a stiff neck. The benefits of no organ involvement at this time. We touched base on the chronic part of my condition and the reality of a lot of treatment in my future...I am personally unable to say forever as I need to BELIEVE THAT THIS DISEASE WILL GO INTO REMISSION. If my insurance approves I am a candidate for a clinical trial for a combination drug therapy. It would be Team Bavituximab/Taxol. I am familiar with Taxol as we had 6 dose dense cycles my first go around. The difference is this time it would be a smaller dose and weekly. They say this reduces side effects and cancer cells respond differently. I am not sure how I feel about using a drug that I have already been treated with. I asked the Dr. about this and his answer was that in theory when Bad Boy Bavituximab gets added to the play book it is suppose to cut off any new vessels that might feed the cancer cells it singles them off by a protein given off by these new bad vessels? Sounds crazy to me. It is also a trial these are all theories that they hope will make a difference in cancer care. If insurance approves I could be enrolled in the trial within a week 2 at the latest.
The largest difference I heard today from this Dr. and the two prior oncologists was that he recommended I do combination chemo therapy vs. single agent chemo. The AZ Oncology form I was given said essentially that there was no difference in life expectancies from either of these 2 treatment options. Single agent has less side effects then double, sounds like a winning proposition to me. Dr. Livingston said that information is correct if you lumped (no pun intended) all breast cancers together. However my illustrious triple negative status needs to have a more aggressive battle plan.
It comes down to what kind of care is going to work for my life and allow me to enjoy the things that matter most. The U of A definitely had organization and flow. I was handed a vibrating pager upon check-in. That's right folks just like the Olive Garden, that little bit of corporate charm is a reminder this is business. Lucky for these folks business is booming. There was a group of ladies beading as we walked in. I was shuttled from check-in, to registration, to the American Cancer Society, then walked to the pavilion where we would wait for my buzzer to go off then they would take me in to see the Dr. Very streamlined, very smooth, nice gardens, lots of information. I spent an hour or so with the Dr., another hour with the research nurse, and then about a half hour with a social worker that wanted to let me know she was there for anything I might need. Kate and I chatted with her about the importance of support from my community. I absolutely have to put my health above everything else this is hard for me. I am trying to plan how best to do this.
The downside about the U of A is that it is in Tucson. Trying to plan a weekly drive south for treatment seems rather daunting, I don't have an extra day to spare. It is however totally possible I have some great friends in Tucson along with family.
Tomorrow I made a change-up, I cancelled my Phoenix appointments for an opportunity to see Dr. Lindquist in Sedona this all happened on the drive down. She comes highly recommended so I look forward to hearing what treatment options she has in mind.
So I came home to find a gift from a dear friend hanging from my door. It is a seaheart the legend says "with a seaheart in hand the right path is always chosen" and in case that did not cover my needs it was infused with essential oils "surrender" and "believe". The universe never ceases to amaze me.
I am grateful for my many blessings and the joy of dear friends in my life.
I feel closer to peace then I have in weeks and I am ready to sleep.
Drink water and breathe
It was yet ANOTHER day of TEARS. How is my body able to support all this damn crying? We left p-town around 7:30 ish. I needed to be in Tucson at 12:30. The 1st set of tears started rolling around 7:40 and have yet to really stop. That was AM and now it is LATE PM this is getting old. I am exhausted but don't know if I can sleep.
Triple Negative Breast Cancer is the bad one in the bunch and those are the cards that I was dealt. Dr. Livingston seemed to knowledgable about this disease, he also was very compassionate and thorough. He spent a little over an hour examining me and talking to me. There were some harder parts like progression of disease into other parts of my body that would cause more then a stiff neck. The benefits of no organ involvement at this time. We touched base on the chronic part of my condition and the reality of a lot of treatment in my future...I am personally unable to say forever as I need to BELIEVE THAT THIS DISEASE WILL GO INTO REMISSION. If my insurance approves I am a candidate for a clinical trial for a combination drug therapy. It would be Team Bavituximab/Taxol. I am familiar with Taxol as we had 6 dose dense cycles my first go around. The difference is this time it would be a smaller dose and weekly. They say this reduces side effects and cancer cells respond differently. I am not sure how I feel about using a drug that I have already been treated with. I asked the Dr. about this and his answer was that in theory when Bad Boy Bavituximab gets added to the play book it is suppose to cut off any new vessels that might feed the cancer cells it singles them off by a protein given off by these new bad vessels? Sounds crazy to me. It is also a trial these are all theories that they hope will make a difference in cancer care. If insurance approves I could be enrolled in the trial within a week 2 at the latest.
The largest difference I heard today from this Dr. and the two prior oncologists was that he recommended I do combination chemo therapy vs. single agent chemo. The AZ Oncology form I was given said essentially that there was no difference in life expectancies from either of these 2 treatment options. Single agent has less side effects then double, sounds like a winning proposition to me. Dr. Livingston said that information is correct if you lumped (no pun intended) all breast cancers together. However my illustrious triple negative status needs to have a more aggressive battle plan.
It comes down to what kind of care is going to work for my life and allow me to enjoy the things that matter most. The U of A definitely had organization and flow. I was handed a vibrating pager upon check-in. That's right folks just like the Olive Garden, that little bit of corporate charm is a reminder this is business. Lucky for these folks business is booming. There was a group of ladies beading as we walked in. I was shuttled from check-in, to registration, to the American Cancer Society, then walked to the pavilion where we would wait for my buzzer to go off then they would take me in to see the Dr. Very streamlined, very smooth, nice gardens, lots of information. I spent an hour or so with the Dr., another hour with the research nurse, and then about a half hour with a social worker that wanted to let me know she was there for anything I might need. Kate and I chatted with her about the importance of support from my community. I absolutely have to put my health above everything else this is hard for me. I am trying to plan how best to do this.
The downside about the U of A is that it is in Tucson. Trying to plan a weekly drive south for treatment seems rather daunting, I don't have an extra day to spare. It is however totally possible I have some great friends in Tucson along with family.
Tomorrow I made a change-up, I cancelled my Phoenix appointments for an opportunity to see Dr. Lindquist in Sedona this all happened on the drive down. She comes highly recommended so I look forward to hearing what treatment options she has in mind.
So I came home to find a gift from a dear friend hanging from my door. It is a seaheart the legend says "with a seaheart in hand the right path is always chosen" and in case that did not cover my needs it was infused with essential oils "surrender" and "believe". The universe never ceases to amaze me.
I am grateful for my many blessings and the joy of dear friends in my life.
I feel closer to peace then I have in weeks and I am ready to sleep.
Drink water and breathe
Sunday, February 5, 2012
The long and short of it.....
The crying spells have become intermittent. A few nights here, a car ride there, all day yesterday......with a few pauses for basketball and a bike ride with the boys, oh that would be a lie I even cried at basketball.....If there was a camera on me while doing laundry someone would assume that I was a depressed housewife sobbing over the endless pile. If I saw me I would call someone for help, I don't know who to call and I need to work through this and get my head on the other side. I need to let go of things that are serving me no purpose and well these tears have almost ran their course. The pity party can only be useful for so long.
I met with Dr. Zieve from the Pine Tree Clinic he specializes in comprehensive cancer care. He is an MD that practices natural medicine. Based on my reports and my financial limitations, traditional chemotherapy is the best choice with a comprehensive herbal support package to support my body while going through this process. I really like him and he seemed to understand my condition and recognized the failures of western medicine. He also recognizes the seriousness of my condition and the need to treat me. I have to find an oncologist that recognizes the need for me to have both camps represented in my next round of care.
My neck is still stiff and I am still searching for the right doctor. Dr. Vu my old oncologist was without answers and a plan. He also REFUSED to work with Dr. Zieve in anyway, "it is not proven", kind of failed logic when the "proven" plan has me walking the cancer road again. Thank you Kate for going with me I could do a whole post on this crazy visit.
I met with a Dr. Boresh in Scottsdale, a little more bedside then Dr. V but I am still not sure same drugs, same side effects, not a lot of hope. He did have the ability to communicate to me that care changes from adjuvant (original disease) to chronic care(metastatic disease). He kept talking about how long people are able to tolerate this chemo or that chemo. He mentioned Zolota as the best transition chemo (this totally sounds like the gateway drug to me). It is oral chemotherapy and the side effects are mild...mouth sores, and painful inflammation of your hands and feet. Sounds like a nice transition to me, no needles and IV's those come later, once your "in the program". Patients can tolerate this chemo for a year or more???? This is the part that confuses me, what no end date? Apparently I am naive in the cancer world, metastatic disease means = chronic disease and the care well it is chemo for life!!!!!!!!!! with a few breaks for holidays and vacations. How gracious of this disease to give me time off..........no wonder I can't stop crying this just sucks! So I sit in this plush rocker and I rock back and forth in this super nice Scottsdale office and I listen and I rock. There is no physical exam apparently my condition has become an oral history....just a story backed up by exams and reports......surreal does not do this justice. Thanks heavens for my friend Lara sitting with me asking questions as I rocked and processed. Dr. B says I need a bone scan and a brain MRI apparently a pet scan does not show brain tumors (fabulous) or bone mets (super). These additional test will give him the "COMPLETE" picture. We always like to know what we are dealing with. So don't get me wrong Dr. B is nice, seems to be good at what he does, has a nice office he offers the same menu choices as Dr. V, only his office is a couple of hours drive away. I want more in a Dr. maybe that is not realistic, but I want to "feel" like someone "believes" in fighting this disease with me.
There is so much more.....but mom duty calls.
Tomorrow I head to the U of A to meet with Dr. Livingston (not to be confused with the seagull variety:), he comes highly recommended with all the papers. Tuesday I head to Scottsdale to meet with Dr. B and Dr. Kato (perhaps he is the side kick to a superhero I could sure use one of those). I am confidant I will find the right Dr.
The timeline is roughly 4 weeks from surgery, with sooner being better then later... I better get moving.
Drink water and breathe.....oh yeah and my herbal smoothie too...
I met with Dr. Zieve from the Pine Tree Clinic he specializes in comprehensive cancer care. He is an MD that practices natural medicine. Based on my reports and my financial limitations, traditional chemotherapy is the best choice with a comprehensive herbal support package to support my body while going through this process. I really like him and he seemed to understand my condition and recognized the failures of western medicine. He also recognizes the seriousness of my condition and the need to treat me. I have to find an oncologist that recognizes the need for me to have both camps represented in my next round of care.
My neck is still stiff and I am still searching for the right doctor. Dr. Vu my old oncologist was without answers and a plan. He also REFUSED to work with Dr. Zieve in anyway, "it is not proven", kind of failed logic when the "proven" plan has me walking the cancer road again. Thank you Kate for going with me I could do a whole post on this crazy visit.
I met with a Dr. Boresh in Scottsdale, a little more bedside then Dr. V but I am still not sure same drugs, same side effects, not a lot of hope. He did have the ability to communicate to me that care changes from adjuvant (original disease) to chronic care(metastatic disease). He kept talking about how long people are able to tolerate this chemo or that chemo. He mentioned Zolota as the best transition chemo (this totally sounds like the gateway drug to me). It is oral chemotherapy and the side effects are mild...mouth sores, and painful inflammation of your hands and feet. Sounds like a nice transition to me, no needles and IV's those come later, once your "in the program". Patients can tolerate this chemo for a year or more???? This is the part that confuses me, what no end date? Apparently I am naive in the cancer world, metastatic disease means = chronic disease and the care well it is chemo for life!!!!!!!!!! with a few breaks for holidays and vacations. How gracious of this disease to give me time off..........no wonder I can't stop crying this just sucks! So I sit in this plush rocker and I rock back and forth in this super nice Scottsdale office and I listen and I rock. There is no physical exam apparently my condition has become an oral history....just a story backed up by exams and reports......surreal does not do this justice. Thanks heavens for my friend Lara sitting with me asking questions as I rocked and processed. Dr. B says I need a bone scan and a brain MRI apparently a pet scan does not show brain tumors (fabulous) or bone mets (super). These additional test will give him the "COMPLETE" picture. We always like to know what we are dealing with. So don't get me wrong Dr. B is nice, seems to be good at what he does, has a nice office he offers the same menu choices as Dr. V, only his office is a couple of hours drive away. I want more in a Dr. maybe that is not realistic, but I want to "feel" like someone "believes" in fighting this disease with me.
There is so much more.....but mom duty calls.
Tomorrow I head to the U of A to meet with Dr. Livingston (not to be confused with the seagull variety:), he comes highly recommended with all the papers. Tuesday I head to Scottsdale to meet with Dr. B and Dr. Kato (perhaps he is the side kick to a superhero I could sure use one of those). I am confidant I will find the right Dr.
The timeline is roughly 4 weeks from surgery, with sooner being better then later... I better get moving.
Drink water and breathe.....oh yeah and my herbal smoothie too...
Tuesday, January 24, 2012
Giant Tears
I now have insomnia. My neck is stiff or I have a stiff neck. It feels sort of hot and angry kind of like me at this moment. This present attitude reflects my complete and total lack of presence but only for a short piece of time maybe longer if need be. I spoke with my surgeon and the biopsy results conclude that I have METASTATIC BREAST CANCER..... there are no words to describe the tears that are streaming down my face at this precise moment. They flow full of hot uncertainty, and they just flow. These are not little tears they feel like giant tears full of pain, hurt, sadness. They are also filled with so much love for my ordinary simple life. A life once again threatened by this awful disease. A long time ago someone told me that tears wash your soul. I always thought this meant pain and old hurts. I am 37 years old and I have cried my fair share of tears. Tonight they just feel different. The tears just well up in my eyes and then they roll hot and slow down the front of my face and the tears feel so big and so large it is as if a single tear reaches all the way from my eye to where it splashes on my chest. Then it seems like I could not possibly have enough liquid left in my ducts and in that exact second another burning hot tear rolls out ever so gently down my entire face to my chest. It is going to take quite a bit of these tears to wash away the sadness of my heavy heart. So here is hoping these tears stop, if only to allow me to get some more sleep tonight. I am pretty sure tears are not a treatment option if they were I would have this wrapped up in spades.
Tomorrow I put on my game face and meet with a couple of doc's and the cancer journey begins anew. I can't imagine it will be the same as the last time, things never stay the same. I am sure however they have not re-invented the needle since my last stint which means that it is still going to suck.
after a cry like today I need the hydration
drink water and breathe
Tomorrow I put on my game face and meet with a couple of doc's and the cancer journey begins anew. I can't imagine it will be the same as the last time, things never stay the same. I am sure however they have not re-invented the needle since my last stint which means that it is still going to suck.
after a cry like today I need the hydration
drink water and breathe
Thursday, January 19, 2012
2012 can we start over????
The New Year has been off to a somewhat crazy start.
I registered for my first mountain biking race. The Whiskey Off Road is twenty five miles (+/-) of grueling road and trail through our lovely Prescott National Forest. Kind of a big step for me as I only got back on my bike around April of last year. I am so thankful for the awesome ladies that I am fortunate enough to ride with. You all are an inspiration and just so much fun!! So here is to training for the race in our playground. We are so blessed to live and ride here.
WARNING THE REST OF THIS POST SUCKS!!!!!!!!!!!
The year has started off with a cancer scare as well. I found a couple of lymph nodes on my neck swollen. I had a CT scan a few weeks ago, it is so amazing the test confirmed that I had swollen lymph nodes in my neck. I visited my surgeon, Dr. Alan Bornstein and he felt my neck and aggreed that I have swollen lymph nodes. I have swollen lymph nodes and we need to figure out why. Dr. Bornstein is kind of a no nonsense surgeon. He says there is a very small possibility that it could be nothing. Nice to know he always leaves that gap for a small miracle. I believe and pray for miracles, but with 2 cancers under my belt I am kind of a realist. He is not sure what is going on but says, "You will probably JUST need some more chemo." To which I respond with an eye roll, "JUST some more chemo?" Dr. Bornstein profusely apologizes for his wording. For those who have been down the chemo road you may find humor in this little exchange. I have a sense of humor so am not really offended. Dr. B does not lack sensitivity he is just real. He sees medicine scientifically as a tool. He looks at disease by type, progression, and tools to treat it. He does this with minimal fluff, he is on schedule, warm and full of pertinent facts (according to him). He also leads me to feel like he gets me, as if that were relevant, I like to think my care is personalized :).
The only way to tell what I have going on is to have a biopsy. This means my return to the Spa at Thompson Peak for a little out-patient procedure. The procedure is going to be surgery light, a little general anesthesia to make sure I don't move, only 15 minutes or so in the OR. Before surgery it would be nice if I could sqeeze in a PET scan, just to make sure we have the COMPLETE picture. So in addition to working, chasing kids, biking, 2 unplanned Dr.'s appointments, and surgery I now have to work a PET scan into my already full dance card. Being over booked is not fun. There is also quite a bit of pressure associated with a PET scan. YOU WANT TO DO WELL ON THIS TEST. So I follow all the directions, no carbs the day before, no strenuous excercise (I packed in all my yoga and biking the day before). You also have to be super hydrated and you fast. Now mind you I prepared for this test on the Friday after I met with my doctor, they of course could not get the insurance approval in a day so it was tenatively scheduled for the following Monday. So this is my second prep for this test. Monday morning rolls around and I am fasting at least I can have water. The goal behind the radioactive isotopes that are suspended in glucose is that they go to your "hotspots" not your dehydrated organs. You also have to lay very still for an hour while the injection finds your "hotspots", they suggest limited muscle use during this time I guess they don't want your muscles using up this special glucose. So it is pretty much nap time in a dark cozy room, followed by a scan in a BRIGHT tube with your arms over your head for about a half hour. REMEMBER STAY CALM YOU WANT GOOD RESULTS, ANXIETY IS NOT YOUR FRIEND HERE. Needless to say I have not matured much in "the meshes well with medicine" part of my personality. So I was super proud of myself when I passed this test with only having suspicious growth in my lymph nodes. No "hotspots" detected in other parts of my body. What ever I have going on is contained to my lymph nodes, in my neck and clavical. FUCKING FABULOUS........just about sums it up.
So on Wednesday, January 18th, 2012 I had an excisional biopsy at the Spa at Thompson Peak. My surgery was scheduled for 4:00 PM. I was allowed a light breakfast before 8:00 AM followed by an entire day of drinking my own saliva for sustinence, I did this once in a yoga class but that is another story. Doesn't that sound like fun? No water or food until after the procedure. We get to the hospital at 2:00 they check me in. I get taken to the OR around 3:00. Now the fun part starts... pre-op is quiet only a couple of patients...happy hour must not be big here. I of course take this to mean either I will get great care because there is not much going on OR everyone is rushing to get out of here and this is going to really suck. Why I am unable to look at a medical event without personally dramatizing the situation is completely beyond me....I assure you the only thing that may benefit from this is my writing.........living the reality just sucks. I of course make up in my mind that they are RUSHING to get out of here. Enter John the RN with the IV... I gently ask questions like have you done this before? I tell him I hate needles. I have a really hard time with IV's. I try to channel all the calm I can muster. He tells me, "I will feel a poke, don't move, cuss if I need too." So I visualize full plump veins and breathe. Okay the poke...no problem....don't move....got that....MOTHER FUCKER........THE PAIN. Followed by John asking Heather (the other RN) for a little help....my vein collapsed...... words like get the needle a little pressure did I say pain.......I could not even look. My ears are ringing sweat is pouring down my back I could really use a glass of water and the only way to a drink is getting a damn needle in my arm....just great. In order for the show to start I HAVE to get an IV. This is the worst part. Lucky for me we are going into surgery light.....we can use the little tiny IV for the next try......Why didn't we use it in the 1st place? I will never know...it is almost like I am being sent some cosmic message from the hospital universe....this will always be crazy for you....message received it is. So Heather gives it a go and manages with the baby IV. I meet the anesthesiologist, how do you do, I will take great care of you. Dr. Bornstein arrives makes a pen mark on my neck gives me the low down. Saw my pet scan yah, dah, yah, dah, yah, dah...follow up with your oncologist yah, dah, yah, dah, yah, dah. I will call you with the PATHOLOGY Friday or Monday. I wake up an hour later with a stiffer neck and some instructions for after care about when to shower and not, how to take pain pills, ect. ect. ect.
There are no easy ways to swallow the fact that I am headed down yet another road of medical uncertainty. I am frustrated and angry. I have no answers yet.
When I do
I will share them with you
Drink Water and Breathe
I registered for my first mountain biking race. The Whiskey Off Road is twenty five miles (+/-) of grueling road and trail through our lovely Prescott National Forest. Kind of a big step for me as I only got back on my bike around April of last year. I am so thankful for the awesome ladies that I am fortunate enough to ride with. You all are an inspiration and just so much fun!! So here is to training for the race in our playground. We are so blessed to live and ride here.
WARNING THE REST OF THIS POST SUCKS!!!!!!!!!!!
The year has started off with a cancer scare as well. I found a couple of lymph nodes on my neck swollen. I had a CT scan a few weeks ago, it is so amazing the test confirmed that I had swollen lymph nodes in my neck. I visited my surgeon, Dr. Alan Bornstein and he felt my neck and aggreed that I have swollen lymph nodes. I have swollen lymph nodes and we need to figure out why. Dr. Bornstein is kind of a no nonsense surgeon. He says there is a very small possibility that it could be nothing. Nice to know he always leaves that gap for a small miracle. I believe and pray for miracles, but with 2 cancers under my belt I am kind of a realist. He is not sure what is going on but says, "You will probably JUST need some more chemo." To which I respond with an eye roll, "JUST some more chemo?" Dr. Bornstein profusely apologizes for his wording. For those who have been down the chemo road you may find humor in this little exchange. I have a sense of humor so am not really offended. Dr. B does not lack sensitivity he is just real. He sees medicine scientifically as a tool. He looks at disease by type, progression, and tools to treat it. He does this with minimal fluff, he is on schedule, warm and full of pertinent facts (according to him). He also leads me to feel like he gets me, as if that were relevant, I like to think my care is personalized :).
The only way to tell what I have going on is to have a biopsy. This means my return to the Spa at Thompson Peak for a little out-patient procedure. The procedure is going to be surgery light, a little general anesthesia to make sure I don't move, only 15 minutes or so in the OR. Before surgery it would be nice if I could sqeeze in a PET scan, just to make sure we have the COMPLETE picture. So in addition to working, chasing kids, biking, 2 unplanned Dr.'s appointments, and surgery I now have to work a PET scan into my already full dance card. Being over booked is not fun. There is also quite a bit of pressure associated with a PET scan. YOU WANT TO DO WELL ON THIS TEST. So I follow all the directions, no carbs the day before, no strenuous excercise (I packed in all my yoga and biking the day before). You also have to be super hydrated and you fast. Now mind you I prepared for this test on the Friday after I met with my doctor, they of course could not get the insurance approval in a day so it was tenatively scheduled for the following Monday. So this is my second prep for this test. Monday morning rolls around and I am fasting at least I can have water. The goal behind the radioactive isotopes that are suspended in glucose is that they go to your "hotspots" not your dehydrated organs. You also have to lay very still for an hour while the injection finds your "hotspots", they suggest limited muscle use during this time I guess they don't want your muscles using up this special glucose. So it is pretty much nap time in a dark cozy room, followed by a scan in a BRIGHT tube with your arms over your head for about a half hour. REMEMBER STAY CALM YOU WANT GOOD RESULTS, ANXIETY IS NOT YOUR FRIEND HERE. Needless to say I have not matured much in "the meshes well with medicine" part of my personality. So I was super proud of myself when I passed this test with only having suspicious growth in my lymph nodes. No "hotspots" detected in other parts of my body. What ever I have going on is contained to my lymph nodes, in my neck and clavical. FUCKING FABULOUS........just about sums it up.
So on Wednesday, January 18th, 2012 I had an excisional biopsy at the Spa at Thompson Peak. My surgery was scheduled for 4:00 PM. I was allowed a light breakfast before 8:00 AM followed by an entire day of drinking my own saliva for sustinence, I did this once in a yoga class but that is another story. Doesn't that sound like fun? No water or food until after the procedure. We get to the hospital at 2:00 they check me in. I get taken to the OR around 3:00. Now the fun part starts... pre-op is quiet only a couple of patients...happy hour must not be big here. I of course take this to mean either I will get great care because there is not much going on OR everyone is rushing to get out of here and this is going to really suck. Why I am unable to look at a medical event without personally dramatizing the situation is completely beyond me....I assure you the only thing that may benefit from this is my writing.........living the reality just sucks. I of course make up in my mind that they are RUSHING to get out of here. Enter John the RN with the IV... I gently ask questions like have you done this before? I tell him I hate needles. I have a really hard time with IV's. I try to channel all the calm I can muster. He tells me, "I will feel a poke, don't move, cuss if I need too." So I visualize full plump veins and breathe. Okay the poke...no problem....don't move....got that....MOTHER FUCKER........THE PAIN. Followed by John asking Heather (the other RN) for a little help....my vein collapsed...... words like get the needle a little pressure did I say pain.......I could not even look. My ears are ringing sweat is pouring down my back I could really use a glass of water and the only way to a drink is getting a damn needle in my arm....just great. In order for the show to start I HAVE to get an IV. This is the worst part. Lucky for me we are going into surgery light.....we can use the little tiny IV for the next try......Why didn't we use it in the 1st place? I will never know...it is almost like I am being sent some cosmic message from the hospital universe....this will always be crazy for you....message received it is. So Heather gives it a go and manages with the baby IV. I meet the anesthesiologist, how do you do, I will take great care of you. Dr. Bornstein arrives makes a pen mark on my neck gives me the low down. Saw my pet scan yah, dah, yah, dah, yah, dah...follow up with your oncologist yah, dah, yah, dah, yah, dah. I will call you with the PATHOLOGY Friday or Monday. I wake up an hour later with a stiffer neck and some instructions for after care about when to shower and not, how to take pain pills, ect. ect. ect.
There are no easy ways to swallow the fact that I am headed down yet another road of medical uncertainty. I am frustrated and angry. I have no answers yet.
When I do
I will share them with you
Drink Water and Breathe
Tuesday, January 3, 2012
"Love Tears"
I kind of needed to share a story about my son Mason. Tonight I was putting my sweet son to bed and we were just talking. Somehow the conversation got on to how he did not want to become a grown up. I re-assured him that he would grow into a fine man one day that was loving, strong, caring and kind. He would be surrounded by friends and family, maybe meet the girl of his dreams and get married. He said, "Mom will you be at my wedding?". I said, "Of course son I would not miss it for the world." Then my sweet son's eyes started to tear up. I asked him why he was crying and he said, " Mom they are just watering." I told Mason they were "love tears" not the kind you cry when you are horribly sad, angry or hurt but the kind of tears that flow when you think of perfect love. My sweet young son and I had an amazing moment where we just shared "love tears". I am so blessed to be a mother to my amazing boys and am grateful for each day that I spend with them.
So on a maintenance note. I had my one year check up with Dr. Vu in December. According to blood work and physical exams I am NED (no evidence of disease). This is fantastic news. It does not however negate the fact that CANCER is a GIANT MONKEY ON MY BACK. I think the worry ebbs and flows. This will be something I have to deal with forever. Before cancer the story of "love tears" would mean something different for me. I would have taken for granted my presence at my son's wedding. The thought of my own mortality now plays into my processing of future events. I realize that I need to live in the NOW. Not one of us has a guarantee for tomorrow. I try to face each day with gratitude.
Cancer is a wicked club. I don't know if I shared that my half-sister was diagnosed with ovarian cancer last year. Her journey began shortly after I finished treatment. I believe I was still having reconstruction surgery when she was having her surgery to remove her cancer in April. We went under the knife within days of each other, in separate states. After my surgery I began to heal for the 1st time since my surgery in April 2010. No more chemo, no more operations for me. While my sister Arlene began her 1st cycle of chemotherapy. She was amazing through treatment and finished in October of last year. Arlene's doctor released her from care and allowed for her to return to Japan where her husband was stationed with the Navy. Last month my sister was having stomach pain and they think that her cancer has returned. She was flown back to the states today to meet with her oncologist. My heart breaks at the thought of her going through chemo again, I pray for her children, her husband, and our family. Cancer does not have any rhyme or reason. Arlene is not BRACA positive. I don't know if I am. I was never tested. I don't know if our cancer is genetically linked. In the end it doesn't even matter (I don't know how Linkin Park got in here). Cancer just sucks. Pray for my sister.
Take some time, count your blessings, shed some love tears,
drink water and breathe
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