Well my friends, much has changed since I last spoke with you. The disease in my lungs is now rapidly advancing, especially the left lung. The change between my December scan and my April scan was unbelievable. I have spoken with my Pulmonologist, my Oncologist (who in turn has spoken with her 5 colleagues), and put a call into Dr. Dresscher (my second opinion guy in Seattle) whom I'm waiting to hear back from just to see if he has anything else to offer. The bottom line is that treatment isn't working, and hasn't been working for some time. My Oncologist has given me three options. Option One is to try one last line of chemo called Topotecan. My Onocologist isn't hopeful that it will be any more successful than the past drugs as the cancer becomes more and more resistant and I become weaker and weaker. Although my white blood cell count looks pretty good right now. Dr. McC's objective has always been "quality of life" for me and if I have six months or less, I don't want to be sick the entire time. Both my Pulmonologist and Oncologist believe I have six months or less. Option two would possibly be a clinical trial, but a trial is a trial and you never know what you are going to get. I could end up really sick and I don't want that. Option three is to do nothing, and trigger hospice. So, let me say...I AM NOT ready for Hospice, and I'm not done fighting. I am currently fighting an infection, I have pleurisy, and I'm on morphine pills and liquid to help with my cough and pain.
My friend John is here from Australia visiting and caring for me. It is all to abruptly clear that I am no longer able to be on my own...especially since I started the morphine a week ago.
I also had BRCA testing done yesterday (my previous insurance would not cover it). That determines if my cancer is hereditary. If I test positive, there is one other treatment that I would be eligible for.
That's all for now my friends...much love to everyone!
Tuesday, April 28, 2015
Sunday, January 25, 2015
Sunday, January 24, 2015 - Update
It's been about three months since I've updated my blog and a lot has happened since then. Here is the condensed version. I did three monthly treatments of Doxil, but my body did not respond and the cancer continues to spread and grow throughout my lungs. My shortness of breath continued to escalate which took me back to my Pulmonologist. He took me through a series of testing to try and determine the cause. We did an ultra sound on my legs and a CT scan of my chest to rule out blood clots. Both tests came back clean. Next he did a bronchoscopy so he could look into my lungs and see exactly what's going on in there. What he confirmed was that I have two air passages that are completely blocked, and one that is partially blocked by tumors. They aren't main air passages, but his analogy was normally you breathe through something the size of a drinking straw...in the places where I'm blocked, it's like trying to breathe through a coffee stirrer. Next step...radiation. Not as a treatment, but as treating a symptom (the tumors squeezing my air passages closed). So...as of this past Wednesday I completed ten daily treatments of radiation. Now we are just waiting for my body to respond. Once my cells split, and the radiation does its thing I should see an improvement in my breathing. For right now I am fatigued beyond belief...imagine shampooing your hair and having to take a break before you can finish. Some days I'm light headed (due to low blood pressure, dehydration or maybe all of the shit that has been pumped into my body in the past 3.5 years). I'm still coughing and gaging...which sometimes makes me vomit. Since the radiation no matter what I eat or drink I feel like I am swallowing a piece of un-chewed burnt toast. Both Friday and Saturday when I got sick I threw up blood. That's how raw my throat is. They say things should improve in about a week. I'm scheduled to start Avastin on Monday, but I'm going to discuss pushing it out a week as the Avastin can slow the healing process. I'd like to give my throat, esophagus, tummy etc. adequate time to heal.
My family and friends continue to care for me. I am currently not driving, cooking or cleaning...because I am not able to...so they do it all for me. I thank God everyday for the love and support of my posse.
That's it my friends...I keep waiting for better to come, but she keeps hiding just ahead.
Monday, October 13, 2014
Monday, October 13, 2014 - PET Scan Results
Well, chemo vacations aren't always what they are cracked up to be. Although my time off allowed my body and mind to rest, it also allowed those bastard tumors to grown and multiply. The only good news from the scan, which I am VERY grateful for is that the cancer is still contained to my lungs...there is no cancer elsewhere in my body.
I'm down, but far from out...pissed at the cancer...want to scream fu@k from a mountain top...cry...and then kick something.
It's currently 11:45am and I'm sitting in the cocktail lounge, also known as the infusion suite getting magnesium, saline, steroids, anti-nausea and Doxil. Come on baby, momma needs a new pair of shoes!
I'm down, but far from out...pissed at the cancer...want to scream fu@k from a mountain top...cry...and then kick something.
It's currently 11:45am and I'm sitting in the cocktail lounge, also known as the infusion suite getting magnesium, saline, steroids, anti-nausea and Doxil. Come on baby, momma needs a new pair of shoes!
Saturday, October 11, 2014
Wednesday, October 8, 2014 - PET Scan
I arrived at Providence sporting my PET scan attire...heavy cotton pull over (it's colder that a witches boob in a cast iron bra in those scanning rooms), undies, sweatpants and runners. No zippers, pulls, hooks, snaps, jewelry, etc...this makes it so much easier than having to dress down and remove your jewels. These are the words of a veteran scanner.
I introduce myself to the young lady at the counter and let her know that I am here for a PET scan. She tells me she needs to confirm that I have Regence Power Port Insurance and asks if I have my insurance card with me. I was dumbfounded...I'm certain I looked as though I was having an out of body experience. I wanted to laugh out loud...but controlled it to a grin as I explained that I used to have Regence Blue Cross Insurance, but now have Providence (as they know and had confirmed just days earlier on the phone)..and that yes, I have a Smart Port, although that has nothing to do with insurance. Now she is looking at me as though she is having an out of body experience. Next she hands me the canister of hell (the foul tasting crap you need to drink before a scan) and a cup. I ask her how long I have to drink it (time restrictions vary)..she replies, you don't have to chug it. I reply...I know, but how long...15 minutes, 30, 45? Again, she is looking through me. At this point I just turn to walk away and reply, OK, so basically you don't know.
Shortly after enjoying a few sips of my cocktail from hell, the technician calls my name and off we go. Once in the back I confirm I'm me...she starts pulling stuff out of her cart and I start rolling down my top so they can access my port. She looks at me and says...oh, you have a port. Argh! Of course I have a port...It was installed here, access here for other scans, when I spent the night with you lovely people on Fathers Day you accessed it, and again on July 24th when I had my most recent CAT scan done...here! And...I also told the woman who scheduled the ultrasound for my thyroid ultrasound that
I have a port. Bajeezus! So now, the technician has to locate an IV nurse as she isn't allowed to access my port. It just goes to show you Jane, it's always something.
I introduce myself to the young lady at the counter and let her know that I am here for a PET scan. She tells me she needs to confirm that I have Regence Power Port Insurance and asks if I have my insurance card with me. I was dumbfounded...I'm certain I looked as though I was having an out of body experience. I wanted to laugh out loud...but controlled it to a grin as I explained that I used to have Regence Blue Cross Insurance, but now have Providence (as they know and had confirmed just days earlier on the phone)..and that yes, I have a Smart Port, although that has nothing to do with insurance. Now she is looking at me as though she is having an out of body experience. Next she hands me the canister of hell (the foul tasting crap you need to drink before a scan) and a cup. I ask her how long I have to drink it (time restrictions vary)..she replies, you don't have to chug it. I reply...I know, but how long...15 minutes, 30, 45? Again, she is looking through me. At this point I just turn to walk away and reply, OK, so basically you don't know.
Shortly after enjoying a few sips of my cocktail from hell, the technician calls my name and off we go. Once in the back I confirm I'm me...she starts pulling stuff out of her cart and I start rolling down my top so they can access my port. She looks at me and says...oh, you have a port. Argh! Of course I have a port...It was installed here, access here for other scans, when I spent the night with you lovely people on Fathers Day you accessed it, and again on July 24th when I had my most recent CAT scan done...here! And...I also told the woman who scheduled the ultrasound for my thyroid ultrasound that
I have a port. Bajeezus! So now, the technician has to locate an IV nurse as she isn't allowed to access my port. It just goes to show you Jane, it's always something.
Friday, October 3, 2014 - Road Trip!
Sharon and I took a road trip and headed up to Seattle, where I got a second opinion regarding treatment moving forward. Dr. D. was great. He feels that my treatment to date has been resonable, and that I have many, many treatment options moving forward. His top three choices for me at this stage are:
1. Doxil - once a month IV treatment, it is well tolerated, and you can be on it long term (Dr. McC. has patients who have been on it four to five years). Hopefully it will stop the tumors from growing, and there is a 30% - 35% chance of tumor reduction. I'll take that!
2. Avastin - also well tolerated. Not a chemo...this drug restricts the blood vessels surrounding the tumors which keeps them from growing. This drug has the potential for serious side effects (high BP, stroke, intestinal perforation...yes, I said intestinal perforation) but they are low. Even lower for me because I have no disease in my abdomen.
3. Topotican - good response, but can have bone marrow issues.
He discussed BRCA testing (gene carrier) which determines if your cancer is hereditary. It can also help in choosing treatment if you are platin (Cisplatin and Carboplatin) sensitive. It's unlikely that I carry the gene as only 10% to 15% of the population do but...it can provide additional information that can assist in therapy. When I was first diagnosed Dr. McC. spoke with me about the BRCA testing...my recollection was that it was only to determine if my female family members were at an increased risk of cancer. I love my girls dearly, but declined...solely from a cost perspective as it was not covered by insurance and the cost was approximately $2,500 - $3,000.
Dr. D. recommended that not now, but at some point in the future I have tumor sequencing (DNA) to learn about my actual tumor...this way they can specifically target treatment. Imagine a customized cocktail. Martini, one onion, four olives...grin.
Lastly, I asked him about my lousy magnesium. He confirmed that it is caused by the platin brothers (Cisplatin and Carboplatin). Seems the platin drugs drain the magnesium from your system and it is a long term, not short term recovery. I asked define long term...he said a year. I wanted to say shit.
He closed by telling me that I need to have a PET scan (already scheduled) and to get back in treatment (also already scheduled). He also said if I thought of anything more, on the drive home, or a few days later, that I should feel free to contact him and that if I had any difficulty getting DNA testing done in Portland, he could take care of that for me.
I really liked Dr. Drescher...too bad Seattle is three hours north. Lucky me, Seattle is only three hours north. Grin. I like knowing I've got an all-star on my bench.
1. Doxil - once a month IV treatment, it is well tolerated, and you can be on it long term (Dr. McC. has patients who have been on it four to five years). Hopefully it will stop the tumors from growing, and there is a 30% - 35% chance of tumor reduction. I'll take that!
2. Avastin - also well tolerated. Not a chemo...this drug restricts the blood vessels surrounding the tumors which keeps them from growing. This drug has the potential for serious side effects (high BP, stroke, intestinal perforation...yes, I said intestinal perforation) but they are low. Even lower for me because I have no disease in my abdomen.
3. Topotican - good response, but can have bone marrow issues.
He discussed BRCA testing (gene carrier) which determines if your cancer is hereditary. It can also help in choosing treatment if you are platin (Cisplatin and Carboplatin) sensitive. It's unlikely that I carry the gene as only 10% to 15% of the population do but...it can provide additional information that can assist in therapy. When I was first diagnosed Dr. McC. spoke with me about the BRCA testing...my recollection was that it was only to determine if my female family members were at an increased risk of cancer. I love my girls dearly, but declined...solely from a cost perspective as it was not covered by insurance and the cost was approximately $2,500 - $3,000.
Dr. D. recommended that not now, but at some point in the future I have tumor sequencing (DNA) to learn about my actual tumor...this way they can specifically target treatment. Imagine a customized cocktail. Martini, one onion, four olives...grin.
Lastly, I asked him about my lousy magnesium. He confirmed that it is caused by the platin brothers (Cisplatin and Carboplatin). Seems the platin drugs drain the magnesium from your system and it is a long term, not short term recovery. I asked define long term...he said a year. I wanted to say shit.
He closed by telling me that I need to have a PET scan (already scheduled) and to get back in treatment (also already scheduled). He also said if I thought of anything more, on the drive home, or a few days later, that I should feel free to contact him and that if I had any difficulty getting DNA testing done in Portland, he could take care of that for me.
I really liked Dr. Drescher...too bad Seattle is three hours north. Lucky me, Seattle is only three hours north. Grin. I like knowing I've got an all-star on my bench.
Friday, October 10, 2014
September 28, 2014 - End of Summer
Sad to say with the end of summer, also comes the end of my chemo vacation. It's been just under three months since I have had chemo. It has been a lovely holiday, even if I did spend three mornings a week at Compass getting magnesium infusions. I am still coughing a fair amount...but I knew I would. I feel like I have regained some of my stamina. And I know that my blood work has improved. Today I have labs, vitals, see Dr. McC. and of course...a magnesium infusion.
It was good to check in with Dr. McC. as I have not seen her in weeks. She is only at the Rose Quarter office on Mondays, and for my past two appointments she has been out of the office. Dr. McC. and I talked about treatment moving forward. Her first choice of treatment is Doxil, which is also my first choice based on what we talked about previously. I also talked with her about me choosing to get a second opinion (which happens this Friday, Oct. 3rd)...she was understanding and supportive. She is scheduling me for a PET scan next week, and a follow up appointment with her on October 13th.
So about that PET scan...a very nice man phones from Providence to confirm my doctors request for the PET scan and to provide me with some instructions for the morning of. He tells me when he is done he will transfer me to the scheduler. This is where the fun begins....and let me just start by saying...holy Mary, Mother of God. Drive your own health care people...otherwise there is going to be a multiple car pile up! She begins by saying hi, my name is --- and I am going to schedule the ultrasound for your thyroid. WTF? I explained that she had to be looking at another patients file as I was being scheduled for a PET scan. She asked to put me on hold, came back, then she asked to put me on hold again as she was having trouble with the calendar...finally I said...why don't you call me back when you are ready. She agreed and we disconnected. When she phoned back she confirmed that I have Providence Insurance...and wanted to know if I had a history of cancer. Gee...let me think
on that. I told her I have a port (remember this...it will be discussed later...lol)...that seemed to complete the conversation. My PET scan schedule for Wednesday, October 8th...just hope I'm not scheduled for an ultra sound of my thyroid.
It was good to check in with Dr. McC. as I have not seen her in weeks. She is only at the Rose Quarter office on Mondays, and for my past two appointments she has been out of the office. Dr. McC. and I talked about treatment moving forward. Her first choice of treatment is Doxil, which is also my first choice based on what we talked about previously. I also talked with her about me choosing to get a second opinion (which happens this Friday, Oct. 3rd)...she was understanding and supportive. She is scheduling me for a PET scan next week, and a follow up appointment with her on October 13th.
So about that PET scan...a very nice man phones from Providence to confirm my doctors request for the PET scan and to provide me with some instructions for the morning of. He tells me when he is done he will transfer me to the scheduler. This is where the fun begins....and let me just start by saying...holy Mary, Mother of God. Drive your own health care people...otherwise there is going to be a multiple car pile up! She begins by saying hi, my name is --- and I am going to schedule the ultrasound for your thyroid. WTF? I explained that she had to be looking at another patients file as I was being scheduled for a PET scan. She asked to put me on hold, came back, then she asked to put me on hold again as she was having trouble with the calendar...finally I said...why don't you call me back when you are ready. She agreed and we disconnected. When she phoned back she confirmed that I have Providence Insurance...and wanted to know if I had a history of cancer. Gee...let me think
on that. I told her I have a port (remember this...it will be discussed later...lol)...that seemed to complete the conversation. My PET scan schedule for Wednesday, October 8th...just hope I'm not scheduled for an ultra sound of my thyroid.
Wednesday, August 13, 2014
Monday - July 28, 2014 - CAT Scan Results
Well shit. I received the results of my CAT scan today and the tumors have all grown. Not a lot, but slightly. The good news is there is no sign of cancer anywhere else in my body...meaning the cancer hasn't metastasized elsewhere and I still have only the original dirty half dozen in my lungs.
Dr. McC. has discussed four treatment options for future use...but for now, as I mentioned in my previous post, I am going to take a chemo vacation. I will still be receiving magnesium three times weekly...but no treatment.
Quiet times...visitor from Oz...beach...mountains...rinse, lather, repeat.
Dr. McC. has discussed four treatment options for future use...but for now, as I mentioned in my previous post, I am going to take a chemo vacation. I will still be receiving magnesium three times weekly...but no treatment.
Quiet times...visitor from Oz...beach...mountains...rinse, lather, repeat.
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