I haven't posted since 2012 and I've been thinking about posting for a long time. Not sure why, maybe I was just lazy..anyways I just finished an inspiring documentary called "Crazy Sexy Cancer" by Kris Carr. She also has a rare cancer called "epithelioid hemangioendothelioma"(and I thought mine was hard to read) with tumors in her liver and lungs. She not only tracks her own life but the life of 3 other cancer survivors. My friend Llana lent me this DVD 2 years ago but I finally watched it tonight..yea it takes me a while to get to stuff sometimes. This reminded me that I should post updates once in a while, especially if it could help a future cancer patient/survivor...and yea for those who have seen it "FUCK CANCER"!
First up, the Crizotinib \ Xalkori seems to be working or I hope it's working. We have no evidence other than how I am feeling, which is the important part right? I have a scan coming up (unless insurance fucking denies it again) within the month then I will know for sure. My doc gave me 3 months to live at the beginning of July mainly because the scans looked so bad, lots of tumors along my upper chest wall and that's all we can see since I only had a chest CT and not a full body. I was in severe pain (couldn't bend forward or twist my neck without extreme pain) and I partially blame Cigna for this since Connie and I were trying to get a long overdue full body PET/CT scan and the Crizotinib for months which they denied even tho I have had the PET/CT many times. Maybe I wouldn't of been in so much damn pain if I started the drug earlier and we had an earlier scan to show how bad it was getting. I was also recommended to get off the Pazopanib by this point since my docs said it's most likely not working anymore. These TKI or "nib" class drugs are typically tested for 6 months through clinical trials and they stop working after about a year for many patients. This is uncharted territory for medical science and earlier in the year my doc even told me "anything goes" at this point in my Pazopanib treatment. I was like "greeaaaaat"...At least he's honest with me.
When I arrived at UCLA in early July writhing in pain, my doc prescribed me some of the most powerful pain meds like Dilaudid (another opioid) and Fentanyl patches (100mcg in strength). The patches aren't prescribed to anyone unless they have leveled up to the final opioid (yes I've tried just about all of em by this point). Not only that, it is 80-100x stronger than Morphine! Dat some powerful ass shit man. It's a patch that slowly released opioids into my system over the course of 72 hours but if I try to ingest it all at once it will just kill me (even extremely hot baths can kill me since they are heat activated). So I have read on the forums that I need to "respect the patch"...so now I takes baths in between patches. The patch and Dilaudid were working and I felt less pain but I was experiencing memory loss and I just didn't feel good at all. The 50mcg Fentanyl patch wasn't enough so I had to go up in dose from to 100mcg just so life was somewhat bearable. Connie organized visits by my friends including many Blizzard folk and my boss Chris. They can attest to how bad I looked and sounded. I didn't even remember some of the visits since I was so hopped up on drugs and I was literally dying on a rented hospital bed at home. There wasn't much the hospital could do for me even if I was admitted.
Here's where timing gods were really on my side. Around the time Connie ordered me a hospital bed and Kimba lent me her wheelchair I get an email from my HR manager Julie that using the powers of Activision Blizzard Benefits (ABLIFE) they were able to overturn my denial for the Crizotinib. I was excited to hear that since by that point I had nowhere to go and the doctors were about to give me full chemo just as a last ditch effort. So before the end of the week I get a call from CVS Caremark(CVS's specialty drug delivery service) saying they had my delivery ready for the 14k a month drug roughly 250 bucks a fucking pill, seriously...they also have to tell me the cost since it's delivered to my door. This is the drug that my Foundation One tumor testing (from March 2014) showed as a potential winner to hopefully stop or slow my tumors down (for those interested I needed an ALK inhibitor). Luckily they do next day delivery so I was like " fuck ya!". Anyways I started taking it right away and felt noticeably better within 3-4 days. On a side note, foundation one took care of the appeal cost and the 7k that Cigna didn't want to pay for was covered..yay.
Week by week I was feeling better and there was some side effects in the beginning (like vomiting from driving or eating) but those went away as soon as I was on a consistent regiment of Zolfran (a safe anti-nausea med) and fruits! It was also only the first week where I had noticeable side effects (I do see light trailing in the dark but that ain't so bad). No more white hair since that was a Pazopanib thing and all the other side effects are coming from my insane 100mcg Fentanyl patch. I am trying to taper back down to 50mcg since it is highly physically addictive and adds to my breathing problems which I already have issues with...yes.. I haz lungs filled with innumerable amount of tumors along with childhood asthma which has come back.
In early July when things started to get bad my wife Connie (Constance Griffith) took leave from her designer job at Carbine Studios to be my caretaker. Since my arms are still weak and its hard to pick up heavy stuff she basically takes care of most everything around the house (including some upgrades which she couldn't do while crunching and wanted to do for years). I love her now more than ever and she has fully taken responsibility for my health (I mean read the last 2 blog posts). She has been super awesome and my best supporter during these brushes with death, I know it takes a large toll on her and I wish that I was recovering faster so I can physically go back to work and help out more around the house. My dad Del has also been pitching in along with Connie's brother Rob and my..mother Yoshiko. I still get tired easily and it's embarrassing sometimes since I am so used to being able to do everything alone. I really have to pace myself otherwise I can't catch my breath and start to hypo-ventilate. I have been feeling less physical pain week by week so we will see. On a final note, I have been more emotional now that ever in my life which is a bit weird for me being half Japanese and all (ex. crying while talking to people, thinking to myself or sobbing during dramatic movies? I never used to do that). Anyways I will update the blog again once I get another scan and/or a UCLA update. KKG out.
PS. Connie will definitely, give me shit, for my, bad grammar and usage of comma's :)
Friday, September 5, 2014
Saturday, July 12, 2014
UPDATE: Successful Resolution with Cigna
I am overjoyed to write that we finally received Kevin's crizotinib (brand name Xalkori) yesterday at no co-pay, fully covered. Cigna also covered 100% of the cost (no co-pay, no deductible) for an adjustable hospital bed, so Kevin can now sit and lie down much more comfortably.
We had been working with the Cigna representative for Activision Blizzard, and despite my anger at Cigna because of all the delays and denials of services (delays and denials that have materially affected his health and mental well-being), I am grateful for Julie's efforts on our behalf. Cigna will make an exception on some agreement with Activision Blizzard, she told me what it was but honestly I wasn't really hearing anything except "we are authorizing the medication" so I'm not sure what it was. I don't wish to sound ungrateful, but I only wish this had happened sooner, before his health was allowed to deteriorate to this point. Because we managed to get chest CTs instead of the PET scan that kept getting denied (the whole point was to differentiate between radiation fibrosis and actual met growth), we've dropped the PET scan as the mets in his lungs have advanced to the point where there's really no point in putting any further energy into trying to get a full scan.
We have an appeal in process to get his gene sequencing claim paid for. Foundation Medicine (the company that performed the gene-sequencing) is assisting us with the appeal for the $7200 bill. They said they'll help us up to three levels of appeals, so I guess we'll see.
Otherwise than that, my goal is to just keep Kevin in relative comfort, keep him moving so he can stay independent, and hope the crizotinib will help slow down the progress of the disease, wishlist hope is that we see stability, maybe even reversal. It's a lot to hope for, but I'm glad that I'm at least supported by my work, friends, and family so I can be at home with Kevin.
We had been working with the Cigna representative for Activision Blizzard, and despite my anger at Cigna because of all the delays and denials of services (delays and denials that have materially affected his health and mental well-being), I am grateful for Julie's efforts on our behalf. Cigna will make an exception on some agreement with Activision Blizzard, she told me what it was but honestly I wasn't really hearing anything except "we are authorizing the medication" so I'm not sure what it was. I don't wish to sound ungrateful, but I only wish this had happened sooner, before his health was allowed to deteriorate to this point. Because we managed to get chest CTs instead of the PET scan that kept getting denied (the whole point was to differentiate between radiation fibrosis and actual met growth), we've dropped the PET scan as the mets in his lungs have advanced to the point where there's really no point in putting any further energy into trying to get a full scan.
We have an appeal in process to get his gene sequencing claim paid for. Foundation Medicine (the company that performed the gene-sequencing) is assisting us with the appeal for the $7200 bill. They said they'll help us up to three levels of appeals, so I guess we'll see.
Otherwise than that, my goal is to just keep Kevin in relative comfort, keep him moving so he can stay independent, and hope the crizotinib will help slow down the progress of the disease, wishlist hope is that we see stability, maybe even reversal. It's a lot to hope for, but I'm glad that I'm at least supported by my work, friends, and family so I can be at home with Kevin.
Monday, July 7, 2014
Our Troubles with Cigna Health Insurance
It's been a while since we posted. To be honest, during periods of low cancer activity we've been trying to focus on having "normal" lives. Hah. The cancer was relatively stable for about a year and things were calm enough so I could actually ship my game. It sounds selfish, but making WildStar was really important to me and I wanted to be there to see it out the door. It was a relief for a few golden months to be stressed over nothing more than making deadlines and dealing with annoying coworkers.
Then Kevin's health took a nosedive in 2013, and now we're in 2014 with brain mets, lung mets, sternum mets, and the sacrum met (which appears to be mostly inert from radiosurgery performed in 2013).
This post is so people can follow a timeline of our tussles with Cigna:
July 2012 - Surgery in Germany for laser resection of lung tumors, left lung
Nov 2012 - 2nd Surgery in Germany for laser resection of lung tumors, right lung
Cigna Response: Denied, based on policy with Kevin's employer that no surgeries allowed in foreign countries, unless emergency in nature
We chose not to appeal this, after all it was clearly laid out in the handbook, so we paid roughly $70k out of our own pockets. Amazing friends promptly set up a fundraiser and replenished our thoroughly depleted coffers.
May 2013 - Discovery of 5cm sacrum tumor, choking the spinal nerve causing pain and gradual loss of ability to walk/lower body functions
Cigna Response: Refused to approve SBRT (radiosurgery) to zap the tumor, conventional surgery was out since the tumor was actually growing in the bone tissue itself and would have required pelvic reconstruction surgery, lifelong pain, all without a possibility of "getting it all out". We said no thanks, explored radiosurgery instead. I should note they apparently wanted us to go through traditional chemo and therapy despite being told endlessly by our doctors that ASPS (Alveolar Soft Part Sarcoma) is resistant to both and can actually even be aggravated by these.
Kevin also starts pazopanib, a targeted therapy drug approved for sarcoma use, we see some shrinking as evidenced by increased mobility and lessened nerve pain...BUT THERE'S STILL A 5CM TUMOR SITTING IN HIS SPINE. HEY CIGNA, WE CAN HAZ SURGERY NAO???
Cigna Response: Continues to deny SBRT treatment
July 2013 - Kevin hospitalized when pain becomes absolutely unbearable, doctors at the hospital order SBRT on the tumor after reviewing his case
Cigna Response: Denies SBRT, denies the entirety of the hospital treatment claiming SBRT could have been done as an outpatient surgery (WHICH WE TRIED TO GET BUT THEY DENIED EARLIER) Gives us an 80k bill saying that we're not responsible for services performed that were not medically necessary (I guess being admitted into a hospital for torturous pain as a result of a spinal tumor that we can't operate on because insurance is being a bunch of dickheads translates into "not medically necessary")... though I guess since he was hospitalized the onus to pay was on UCLA. Either way, dicks.
Kevin responds well to radiosurgery on sacrum, we see significant shrinkage and Kevin is able to walk with only minor discomfort now. He is on a full regimen of systemic treatments with shitty side effects, but it looks like it's keeping his lung tumors at bay. Before I have to find a lawyer, health insurance through my work (Yay Carbine, go WildStar!) kicks in and Blue Cross covers ALL of the 80k hospital stay + radiosurgery bill. Carbine health insurance > Blizzard health insurance.
Six month period of deceptive stability continues until...
March 2014 - Kevin gets a brain MRI and it's discovered he has brain tumors now. WBRT is actually approved by insurance and he's treated with it for three weeks. Loses hair, extreme fatigue, generally feels like shit. Added a second systemic treatment at this point called Afinitor (everolimus) but Kevin is unable to tolerate it. It creates angry ulcers everywhere, on his back and in his mouth. Kevin cannot even swallow water without being in pain. He drops something like 20-30 pounds before we decide the side effects are just too toxic.
June 2014 - Since the pazopanib seems to be having limited efficacy, with new brain mets having appeared, we search for other treatments. On the advice of a parent who has been battling on behalf of her daughter, who was diagnosed at age 7? 9? with this terrible disease, we had Kevin's tumor gene-sequenced. I'm hazy when exactly we did this, probably back in March, I think? Based on the results, we are strongly recommended to pursue crizotinib (Xalkor) and cabozantinib (Cometriq). But guess what, since neither are FDA approved for use in Kevin's disease, which is a super rare cancer (accounts for .01% of all cancers diagnosed in the US, comes out to maybe 200 or less patients total), insurance denies us. We ask them to make an exception. We want another PET scan to assess how effective pazopanib has been throughout the body.
Cigna Response: Cigna denies our pre-cert authorization request for the PET scan and also the drugs. Says it's medically unnecessary. We try and figure out ways to schedule alternate scans, using MRI imaging, and the loops the doctor's office has to jump through to get a single fucking scan should qualify those nurses for the Olympics. To their credit, they stayed on top of it all, communicated frequently with us, and did everything in their power (including spending hours on the phone with insurance, and with the employee rep from Activision Blizzard).
Now we are squarely in the must seek clinical trials/experimental drugs since our insurance refuses to pay for anything, but his brain mets disqualify him from a lot of things. I will be honest. I don't know if crizotinib or cabozatinib is the answer. In fact, Cigna is correct in that there is no large body of evidence that supports the efficacy in these drugs for ASPS. That being said, there are less than two hundred fucking cases of ASPS diagnosed in a year, most of which are incorrectly diagnosed as something else. Show me the researcher that goes HOT DIGGITY DAMN I can't wait to do research that will apply to .01% of cancer patients! (actually there are some, including our oncologist, but you get what I mean). A rare disease, with very little research work done specifically targeting it, by its very nature is not going to have a ton of peer-reviewed literature published about it. If they had already established an effective treatment for ASPS, wouldn't that be called a cure? This cancer has no cure, we're trying to find one, but apparently unless we're willing to fork out 14.4K for a month's supply of drugs, we have to wait for either a clinical trial or the appeals process to work itself out.
Oh, did I also mention they denied the 8k bill for gene sequencing? It's an experimental/investigational procedure. Foundation One is helping me appeal that.
So right now I have an utter loathing of Cigna, the healthcare system, and the fact that even though it's this cancer that's killing him, and not the insurance company, so many things could have been done sooner, faster, and with less stress and agony on both our parts. I am willing to bet that palliative care measures that I'd like to get for Kevin (a wheelchair, a hospital bed, oxygen tank) will be another terrific fight. It shouldn't have to be like this. A stage four cancer patient should not have to fight health insurance every step of the way to get treatment that will improve his quality of life and extend his life expectancy.
Do me a favor. Share this story. One day, this could be your story.
Devil's Advocate Section
Things Cigna has covered:
-doctor's visits, all of them, and we see a lot of different doctors frequently. Last time I counted he has five doctors he checks in with regularly
-UCLA is one of the top healthcare institutions and it's within our network. I am grateful Cigna covers them
-Many of his scans, and he needs to get them ever 3-4 months (I have no idea why some are okay and some are not)
-most of Kevin's non-targeted therapy drugs like synthetic thyroid hormone (low thyroid levels due to crazy cancer drugs), though they did cover the approved pazopanib which is a pricey drug, all his painkillers (also expensive), and other stuff
-labs
I appreciate that Cigna has covered some of the costs of Kevin's healthcare. What I fault them for is not willing to cover things that could potentially extend his life, especially as the cancer began to advance. I feel like right now they are just waiting for him to DIE.
Then Kevin's health took a nosedive in 2013, and now we're in 2014 with brain mets, lung mets, sternum mets, and the sacrum met (which appears to be mostly inert from radiosurgery performed in 2013).
This post is so people can follow a timeline of our tussles with Cigna:
July 2012 - Surgery in Germany for laser resection of lung tumors, left lung
Nov 2012 - 2nd Surgery in Germany for laser resection of lung tumors, right lung
Cigna Response: Denied, based on policy with Kevin's employer that no surgeries allowed in foreign countries, unless emergency in nature
We chose not to appeal this, after all it was clearly laid out in the handbook, so we paid roughly $70k out of our own pockets. Amazing friends promptly set up a fundraiser and replenished our thoroughly depleted coffers.
May 2013 - Discovery of 5cm sacrum tumor, choking the spinal nerve causing pain and gradual loss of ability to walk/lower body functions
Cigna Response: Refused to approve SBRT (radiosurgery) to zap the tumor, conventional surgery was out since the tumor was actually growing in the bone tissue itself and would have required pelvic reconstruction surgery, lifelong pain, all without a possibility of "getting it all out". We said no thanks, explored radiosurgery instead. I should note they apparently wanted us to go through traditional chemo and therapy despite being told endlessly by our doctors that ASPS (Alveolar Soft Part Sarcoma) is resistant to both and can actually even be aggravated by these.
Kevin also starts pazopanib, a targeted therapy drug approved for sarcoma use, we see some shrinking as evidenced by increased mobility and lessened nerve pain...BUT THERE'S STILL A 5CM TUMOR SITTING IN HIS SPINE. HEY CIGNA, WE CAN HAZ SURGERY NAO???
Cigna Response: Continues to deny SBRT treatment
July 2013 - Kevin hospitalized when pain becomes absolutely unbearable, doctors at the hospital order SBRT on the tumor after reviewing his case
Cigna Response: Denies SBRT, denies the entirety of the hospital treatment claiming SBRT could have been done as an outpatient surgery (WHICH WE TRIED TO GET BUT THEY DENIED EARLIER) Gives us an 80k bill saying that we're not responsible for services performed that were not medically necessary (I guess being admitted into a hospital for torturous pain as a result of a spinal tumor that we can't operate on because insurance is being a bunch of dickheads translates into "not medically necessary")... though I guess since he was hospitalized the onus to pay was on UCLA. Either way, dicks.
Kevin responds well to radiosurgery on sacrum, we see significant shrinkage and Kevin is able to walk with only minor discomfort now. He is on a full regimen of systemic treatments with shitty side effects, but it looks like it's keeping his lung tumors at bay. Before I have to find a lawyer, health insurance through my work (Yay Carbine, go WildStar!) kicks in and Blue Cross covers ALL of the 80k hospital stay + radiosurgery bill. Carbine health insurance > Blizzard health insurance.
Six month period of deceptive stability continues until...
March 2014 - Kevin gets a brain MRI and it's discovered he has brain tumors now. WBRT is actually approved by insurance and he's treated with it for three weeks. Loses hair, extreme fatigue, generally feels like shit. Added a second systemic treatment at this point called Afinitor (everolimus) but Kevin is unable to tolerate it. It creates angry ulcers everywhere, on his back and in his mouth. Kevin cannot even swallow water without being in pain. He drops something like 20-30 pounds before we decide the side effects are just too toxic.
June 2014 - Since the pazopanib seems to be having limited efficacy, with new brain mets having appeared, we search for other treatments. On the advice of a parent who has been battling on behalf of her daughter, who was diagnosed at age 7? 9? with this terrible disease, we had Kevin's tumor gene-sequenced. I'm hazy when exactly we did this, probably back in March, I think? Based on the results, we are strongly recommended to pursue crizotinib (Xalkor) and cabozantinib (Cometriq). But guess what, since neither are FDA approved for use in Kevin's disease, which is a super rare cancer (accounts for .01% of all cancers diagnosed in the US, comes out to maybe 200 or less patients total), insurance denies us. We ask them to make an exception. We want another PET scan to assess how effective pazopanib has been throughout the body.
Cigna Response: Cigna denies our pre-cert authorization request for the PET scan and also the drugs. Says it's medically unnecessary. We try and figure out ways to schedule alternate scans, using MRI imaging, and the loops the doctor's office has to jump through to get a single fucking scan should qualify those nurses for the Olympics. To their credit, they stayed on top of it all, communicated frequently with us, and did everything in their power (including spending hours on the phone with insurance, and with the employee rep from Activision Blizzard).
Now we are squarely in the must seek clinical trials/experimental drugs since our insurance refuses to pay for anything, but his brain mets disqualify him from a lot of things. I will be honest. I don't know if crizotinib or cabozatinib is the answer. In fact, Cigna is correct in that there is no large body of evidence that supports the efficacy in these drugs for ASPS. That being said, there are less than two hundred fucking cases of ASPS diagnosed in a year, most of which are incorrectly diagnosed as something else. Show me the researcher that goes HOT DIGGITY DAMN I can't wait to do research that will apply to .01% of cancer patients! (actually there are some, including our oncologist, but you get what I mean). A rare disease, with very little research work done specifically targeting it, by its very nature is not going to have a ton of peer-reviewed literature published about it. If they had already established an effective treatment for ASPS, wouldn't that be called a cure? This cancer has no cure, we're trying to find one, but apparently unless we're willing to fork out 14.4K for a month's supply of drugs, we have to wait for either a clinical trial or the appeals process to work itself out.
Oh, did I also mention they denied the 8k bill for gene sequencing? It's an experimental/investigational procedure. Foundation One is helping me appeal that.
So right now I have an utter loathing of Cigna, the healthcare system, and the fact that even though it's this cancer that's killing him, and not the insurance company, so many things could have been done sooner, faster, and with less stress and agony on both our parts. I am willing to bet that palliative care measures that I'd like to get for Kevin (a wheelchair, a hospital bed, oxygen tank) will be another terrific fight. It shouldn't have to be like this. A stage four cancer patient should not have to fight health insurance every step of the way to get treatment that will improve his quality of life and extend his life expectancy.
Do me a favor. Share this story. One day, this could be your story.
Devil's Advocate Section
Things Cigna has covered:
-doctor's visits, all of them, and we see a lot of different doctors frequently. Last time I counted he has five doctors he checks in with regularly
-UCLA is one of the top healthcare institutions and it's within our network. I am grateful Cigna covers them
-Many of his scans, and he needs to get them ever 3-4 months (I have no idea why some are okay and some are not)
-most of Kevin's non-targeted therapy drugs like synthetic thyroid hormone (low thyroid levels due to crazy cancer drugs), though they did cover the approved pazopanib which is a pricey drug, all his painkillers (also expensive), and other stuff
-labs
I appreciate that Cigna has covered some of the costs of Kevin's healthcare. What I fault them for is not willing to cover things that could potentially extend his life, especially as the cancer began to advance. I feel like right now they are just waiting for him to DIE.
Tuesday, January 15, 2013
2nd Germany Trip: Post-Update
Hey all,
This is a re-post of an update I made for the ASPS community to keep them informed of Kevin's situation. I thought I'd cross-post it here, in case anyone's still following Kevin's progress through this blog. If anyone has info on SBRT or claims lawyer, please ping me at cswgriffith@gmail.com. Thanks, everyone!
-Connie
Just saw our oncologist this past Monday for our first post-Germany follow-up, thought I'd update everyone.
To recap, in July 2012 Prof. Rolle removed 120+ tumors from Kevin's right lung. We flew back home in August, follow CT scans showed sign of met growth in the operated lung, most likely mets that had been missed, though neither Prof. Rolle nor our oncologist ruled out regrowth. Because no regressive effect was seen, in fact the opposite, a marked increase in met growth (both number and size) in Kevin's unoperated left lung, we returned to Germany in Nov 2012 (3 months after we got back from the last trip) to do the other lung. This time 140+ tumors were removed and Prof. Rolle concluded in his post-surgery diagnosis that unfortunately these surgeries were not having a regressive effect like we'd hoped and even suggested we pursue adjuvant chemotherapy as he could only promise to lighten the tumor load, not accomplish full resection of lung mets. Not that we realistically expected that, after seeing how many mets were removed in Kevin's first surgery. Kevin's right lung still hadn't even healed properly when they did the left lung, so Kevin definitely needs to give his body some time to heal and recover, rehabilitate his lungs, etc before we pursue any more surgeries.
On Monday, our oncologist told us they are definitely seeing regrowth in the right lung. The largest one, as far as they can tell, is roughly 16 mm. Most likely, it's in an area that's difficult for Prof. Rolle to get to and was missed, which is to be expected. Luckily, none of the mets seem to be in dangerous locations, but our oncologist is urging us to seriously consider going on TKIs, either Pazopanib or Sutent. He said there's more data on Sutent, but in terms of effects (and side effects) the two are similar, and Pazopanib is more likely to be covered by insurance as it's been approved for advanced stage soft tissue sarcoma. The idea is to see Kevin's response and tolerance to the drugs and hopefully keep the mets that have regrown or continue to grow under check, and then most likely pursue more surgery.
As for the current mets, especially the largish 16 mm one, our oncologist has recommended SBRT radiosurgery. He mentioned RFA but he said he's actually more inclined to recommend SBRT as it has a very high success rate in terms of preventing local recurrence. I haven't done the full research on SBRT radiation therapy yet, but I thought I'd throw it out there, see if anyone on these boards has any experience.
It's a little disheartening to hear from our doctors that the laser-aided thoracotomies have not slowed down the disease, but the way I'm trying to think about it is that Kevin has 260+ less tumors in his lungs. It's just a little scary, because Kevin really can't tolerate more open lung surgeries, at least not for a little while, but this disease just keeps on chugging.
So that's that. Kevin's taking a week to think about the TKIs. We both need to do some massive research on SBRT. In terms of his recovery, it's a bit slower since both lungs are jacked up now, but he's following Ivan's sagely advice and doing stationary bike at the gym, yoga for breathing and stretching. He's gone back to work, still gets pretty tired. Slowly but surely we're going back to our normal routine.
On another note, has anyone consulted a claims insurance lawyer and can recommend one? We're in California, but we probably don't need a local lawyer to get advice. Cigna rejected our claim for the 1st surgery and we're going to appeal, but I'm wondering if I should talk to a lawyer and suss out the situation. Did I mention how much I loathe and despite Cigna? I seriously don't know how those motherfu**ers sleep at night. They had the nerve to call Kevin an insurance whale. Oh, I'm sorry assholes that Kevin's stage four cancer is putting a crimp in your bottom line. Funny you should mention that, we're finding cancer is murder on our finances too. Imagine that.
I'm convinced there must be a special level of hell reserved for health insurance claims departments.
This is a re-post of an update I made for the ASPS community to keep them informed of Kevin's situation. I thought I'd cross-post it here, in case anyone's still following Kevin's progress through this blog. If anyone has info on SBRT or claims lawyer, please ping me at cswgriffith@gmail.com. Thanks, everyone!
-Connie
Just saw our oncologist this past Monday for our first post-Germany follow-up, thought I'd update everyone.
To recap, in July 2012 Prof. Rolle removed 120+ tumors from Kevin's right lung. We flew back home in August, follow CT scans showed sign of met growth in the operated lung, most likely mets that had been missed, though neither Prof. Rolle nor our oncologist ruled out regrowth. Because no regressive effect was seen, in fact the opposite, a marked increase in met growth (both number and size) in Kevin's unoperated left lung, we returned to Germany in Nov 2012 (3 months after we got back from the last trip) to do the other lung. This time 140+ tumors were removed and Prof. Rolle concluded in his post-surgery diagnosis that unfortunately these surgeries were not having a regressive effect like we'd hoped and even suggested we pursue adjuvant chemotherapy as he could only promise to lighten the tumor load, not accomplish full resection of lung mets. Not that we realistically expected that, after seeing how many mets were removed in Kevin's first surgery. Kevin's right lung still hadn't even healed properly when they did the left lung, so Kevin definitely needs to give his body some time to heal and recover, rehabilitate his lungs, etc before we pursue any more surgeries.
On Monday, our oncologist told us they are definitely seeing regrowth in the right lung. The largest one, as far as they can tell, is roughly 16 mm. Most likely, it's in an area that's difficult for Prof. Rolle to get to and was missed, which is to be expected. Luckily, none of the mets seem to be in dangerous locations, but our oncologist is urging us to seriously consider going on TKIs, either Pazopanib or Sutent. He said there's more data on Sutent, but in terms of effects (and side effects) the two are similar, and Pazopanib is more likely to be covered by insurance as it's been approved for advanced stage soft tissue sarcoma. The idea is to see Kevin's response and tolerance to the drugs and hopefully keep the mets that have regrown or continue to grow under check, and then most likely pursue more surgery.
As for the current mets, especially the largish 16 mm one, our oncologist has recommended SBRT radiosurgery. He mentioned RFA but he said he's actually more inclined to recommend SBRT as it has a very high success rate in terms of preventing local recurrence. I haven't done the full research on SBRT radiation therapy yet, but I thought I'd throw it out there, see if anyone on these boards has any experience.
It's a little disheartening to hear from our doctors that the laser-aided thoracotomies have not slowed down the disease, but the way I'm trying to think about it is that Kevin has 260+ less tumors in his lungs. It's just a little scary, because Kevin really can't tolerate more open lung surgeries, at least not for a little while, but this disease just keeps on chugging.
So that's that. Kevin's taking a week to think about the TKIs. We both need to do some massive research on SBRT. In terms of his recovery, it's a bit slower since both lungs are jacked up now, but he's following Ivan's sagely advice and doing stationary bike at the gym, yoga for breathing and stretching. He's gone back to work, still gets pretty tired. Slowly but surely we're going back to our normal routine.
On another note, has anyone consulted a claims insurance lawyer and can recommend one? We're in California, but we probably don't need a local lawyer to get advice. Cigna rejected our claim for the 1st surgery and we're going to appeal, but I'm wondering if I should talk to a lawyer and suss out the situation. Did I mention how much I loathe and despite Cigna? I seriously don't know how those motherfu**ers sleep at night. They had the nerve to call Kevin an insurance whale. Oh, I'm sorry assholes that Kevin's stage four cancer is putting a crimp in your bottom line. Funny you should mention that, we're finding cancer is murder on our finances too. Imagine that.
I'm convinced there must be a special level of hell reserved for health insurance claims departments.
Tuesday, November 27, 2012
Last Day at the Hospital...
Heya folks,
First off I have to say that this trip has been wonderful compared to the last. What makes it so great? It's the cold weather, more/better pain drugs and the ton of movies, games and TV shows to keep me occupied as well as having great conversations with some of the cooler hospital staff (the days went by fast, hence the lack of blog updates!). The nurses were much friendlier this time and I learned that it's because they had an internal audit a couple months back which affected many of the nurses and their attitude towards patients that pay out-of-pocket (which has been a problem in the C ward before I was even a patient there).
We also made friends with a physical therapist, an ICU nurse, a newer C ward nurse(the gamer) and one of the newer doctors who operated on me who offered to hang out with us sometime during our last 2 weeks here. They are awesome people (who speak English) and we look forward to hanging out with them in Dresden and get a less touristy view of Germany (since they know all the cool local spots) and as a bonus I get to learn more about the hospital and what goes on during my surgery. Since I might have to come back here next year it's worth it for me to treat this like a second home.
Visiting the sacred operating rooms
I've been asking Professor Rolle to show us his laser/operating room since I'm morbidly curious about what happens during the 5-6 hours where I am knocked out and since this is my second operation here I felt inclined to at least ask. He offered to let us see the operating area this morning so we accompanied the awesome doctor I mentioned earlier into the surgery area. Connie and I were split up since the male and female changing rooms are separated so I hung around waiting for someone to let me into the male area until a random nurse finally opened the door for me. I waited in the changing room until one of the doctors got really upset at me for being there and kept saying " no patients in this area, only staff, please leave." I was like "buuut Professor Rolle said its okay." The doctor kept telling me to leave and to tell the Professor when he arrives (he was on his way there). I ended up leaving the room and was quickly greeted by Rolle who let me back into the room and showed me how to put on the surgical scrubs which are needed to get into the sanitized area.
Connie and the other doctor were already on the other side and she gave us a tour of what was happening in both rooms. I was expecting to see an empty operating room but we got to see 2 procedures in-progress!(one person was getting prepped and the other was undergoing surgery) There are a total of 2 main operating rooms in the hospital and they are similar to what you would expect from watching hospital dramas and movies expect for the automatic giant metal sliding doors which are foot activated and portable laser machines (yea it's pretty high-tech and awesome). There are also a bunch of people in the operating rooms working on different tasks (a mixture of doctors and nurses) just like in the movies. We were able to tell that our presence upset the staff but since Professor Rolle was there nobody said anything. The doctor that yelled at me earlier even apologized saying he didn't know that we were "allowed" and that he was only being cautious. I was thinking "Yea, that's right we're cool with the professor so step aside". It was also comforting as a patient to know that the staff here take their work so seriously. I mean would you want random untrained people showing up while you are naked and passed out being cut into..who knows maybe?
Our visit to the operating rooms was short but it was an awesome experience nonetheless, a great finale to our hospital stay. Goodbye Fachkrankenhaus Coswig! We leave early tomorrow morning and are heading to a farmhouse/hotel near Dresden that John Nee booked for us (Thanks again John!). It's 3 bedrooms so if anyone is in the area and wants to visit we have plenty of extra beds for you.
Professor Rolle gave us this print of his involvement in laser development. He's been making surgical lasers since the 80's, that's pretty fucking legit to me.
Here's me with another smiley face on my side.
I only need a scar going across my mid section then I'll look like I've been cut in half.
First off I have to say that this trip has been wonderful compared to the last. What makes it so great? It's the cold weather, more/better pain drugs and the ton of movies, games and TV shows to keep me occupied as well as having great conversations with some of the cooler hospital staff (the days went by fast, hence the lack of blog updates!). The nurses were much friendlier this time and I learned that it's because they had an internal audit a couple months back which affected many of the nurses and their attitude towards patients that pay out-of-pocket (which has been a problem in the C ward before I was even a patient there).
We also made friends with a physical therapist, an ICU nurse, a newer C ward nurse(the gamer) and one of the newer doctors who operated on me who offered to hang out with us sometime during our last 2 weeks here. They are awesome people (who speak English) and we look forward to hanging out with them in Dresden and get a less touristy view of Germany (since they know all the cool local spots) and as a bonus I get to learn more about the hospital and what goes on during my surgery. Since I might have to come back here next year it's worth it for me to treat this like a second home.
Visiting the sacred operating rooms
I've been asking Professor Rolle to show us his laser/operating room since I'm morbidly curious about what happens during the 5-6 hours where I am knocked out and since this is my second operation here I felt inclined to at least ask. He offered to let us see the operating area this morning so we accompanied the awesome doctor I mentioned earlier into the surgery area. Connie and I were split up since the male and female changing rooms are separated so I hung around waiting for someone to let me into the male area until a random nurse finally opened the door for me. I waited in the changing room until one of the doctors got really upset at me for being there and kept saying " no patients in this area, only staff, please leave." I was like "buuut Professor Rolle said its okay." The doctor kept telling me to leave and to tell the Professor when he arrives (he was on his way there). I ended up leaving the room and was quickly greeted by Rolle who let me back into the room and showed me how to put on the surgical scrubs which are needed to get into the sanitized area.
Connie and the other doctor were already on the other side and she gave us a tour of what was happening in both rooms. I was expecting to see an empty operating room but we got to see 2 procedures in-progress!(one person was getting prepped and the other was undergoing surgery) There are a total of 2 main operating rooms in the hospital and they are similar to what you would expect from watching hospital dramas and movies expect for the automatic giant metal sliding doors which are foot activated and portable laser machines (yea it's pretty high-tech and awesome). There are also a bunch of people in the operating rooms working on different tasks (a mixture of doctors and nurses) just like in the movies. We were able to tell that our presence upset the staff but since Professor Rolle was there nobody said anything. The doctor that yelled at me earlier even apologized saying he didn't know that we were "allowed" and that he was only being cautious. I was thinking "Yea, that's right we're cool with the professor so step aside". It was also comforting as a patient to know that the staff here take their work so seriously. I mean would you want random untrained people showing up while you are naked and passed out being cut into..who knows maybe?
Our visit to the operating rooms was short but it was an awesome experience nonetheless, a great finale to our hospital stay. Goodbye Fachkrankenhaus Coswig! We leave early tomorrow morning and are heading to a farmhouse/hotel near Dresden that John Nee booked for us (Thanks again John!). It's 3 bedrooms so if anyone is in the area and wants to visit we have plenty of extra beds for you.
Professor Rolle gave us this print of his involvement in laser development. He's been making surgical lasers since the 80's, that's pretty fucking legit to me.
Here's me with another smiley face on my side.
Tuesday, November 20, 2012
I'm still ALIIIIIIIVE!
Hey All,
Fuuuuuuck, It's been 6 days and I've made it through another one of those damn surgeries! I am feeling good enough to post and since Connie did a great job blogging about the events that transpired I've decided to keep this one short and positive. To quickly summarize, my recovery is faster than before but it was more painful right after the operation. Not only was my epidural line only in for 3 days (down from roughly 8 days the last time) I was out of the ICU a day earlier and I am able to walk up a flight of stairs (barely) almost a week early since I'm not attached to a large & annoying epidural charging station. I still have 1 chest tube which is going to be removed today so that should also significantly reduce my overall pain levels. I have also resumed my lung rehab regiment which includes the salt/mineral inhalation and pressurized breathing multiple times a day. My staples were also removed as I was typing this paragraph by a new nurse who is a big gamer and Diablo 3 player. He said he knew about my fundraiser before I even got to the hospital! GG viral interwebs.
Oh yea they ended up removing over 120 tumors from my left lung.. So within the last 4 months I've had over 250 tumors removed from both lungs! Holy shit that's a lot apparently...
If it wasn't for Rolle's laser I would only have the option of using the TKI chemo drugs or finding other alternative treatments. I am still searching for other long term solutions so if you guys come across something please send it my way...snake oil, basilisk salts? Sure I'll try it.
Entertainment: Final Fantasy Tactics (IPAD), Boardwalk Empire (TV), Endymion by Dan Simmons (audiobook)
Therapy: Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn (audiobook), Full catastrophe living by Jon Kabat-Zinn (audiobook), Bhang Bars & Cannabis Jolly Ranchers (cannabis candies, great for sleep and relaxation)
Temperature: Cold as Ice and I love it. All I have to do is open up a window for a bit and it soothes my soul.
Some Pics for your enjoyment:
Mustache and my neck line (see the stitches about to pop out? yea this is in my fucking neck and hooked up to a major artery)
Both Chest tubes! Yea this shit is going into my lung (upper and lower lobes, hopefully by tomorrow I will have none)
Thanks for reading,
KKG
Fuuuuuuck, It's been 6 days and I've made it through another one of those damn surgeries! I am feeling good enough to post and since Connie did a great job blogging about the events that transpired I've decided to keep this one short and positive. To quickly summarize, my recovery is faster than before but it was more painful right after the operation. Not only was my epidural line only in for 3 days (down from roughly 8 days the last time) I was out of the ICU a day earlier and I am able to walk up a flight of stairs (barely) almost a week early since I'm not attached to a large & annoying epidural charging station. I still have 1 chest tube which is going to be removed today so that should also significantly reduce my overall pain levels. I have also resumed my lung rehab regiment which includes the salt/mineral inhalation and pressurized breathing multiple times a day. My staples were also removed as I was typing this paragraph by a new nurse who is a big gamer and Diablo 3 player. He said he knew about my fundraiser before I even got to the hospital! GG viral interwebs.
Oh yea they ended up removing over 120 tumors from my left lung.. So within the last 4 months I've had over 250 tumors removed from both lungs! Holy shit that's a lot apparently...
If it wasn't for Rolle's laser I would only have the option of using the TKI chemo drugs or finding other alternative treatments. I am still searching for other long term solutions so if you guys come across something please send it my way...snake oil, basilisk salts? Sure I'll try it.
Entertainment: Final Fantasy Tactics (IPAD), Boardwalk Empire (TV), Endymion by Dan Simmons (audiobook)
Therapy: Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn (audiobook), Full catastrophe living by Jon Kabat-Zinn (audiobook), Bhang Bars & Cannabis Jolly Ranchers (cannabis candies, great for sleep and relaxation)
Temperature: Cold as Ice and I love it. All I have to do is open up a window for a bit and it soothes my soul.
Some Pics for your enjoyment:
Mustache and my neck line (see the stitches about to pop out? yea this is in my fucking neck and hooked up to a major artery)
Both Chest tubes! Yea this shit is going into my lung (upper and lower lobes, hopefully by tomorrow I will have none)
Thanks for reading,
KKG
Saturday, November 17, 2012
Out of ICU!
Hi all!
My first blog post for the trip! I also want to thank everyone for their wonderful generosity with regards to our fundraiser. Seriously, you guys are awesome. We both have been saying that at any time we are feeling down, we just have to look at our fundraiser page and read the messages of love and support posted there, to remind us that we are not doing this alone, our friends and family love us, and that we can totally do this. We will get through this, one day at a time, and no matter what happens, you guys are here with us. So thank you all, for giving us the strength to deal with this cancer.
So great news, Kevin was moved out of ICU today, which means we are back in gen pop with our own room and can set up our internetz and laptops. It was harder to do that this time in ICU, as Kevin had roommates, first two older men and then a woman. But I'm getting ahead of myself. The main thing you need to know is--Kevin is out of ICU and doing well!
We got in on Monday night and went straight to the hospital. Normally, flying leaves me feeling grumpy and exhausted, but for whatever reason, I felt great when we arrived. Germany is beautiful this time of year! Well ok, Germany is just a beautiful country, end of story, but we both like the weather so much better this time of year. The air is crisp and cold, and the wind smells of comforting things--cozy fires, fallen leaves, and savory stews!
Tuesday, Kevin had his tests. He feels like an old hand at this now, and we know many of the nurses and doctors now. It's funny, we've both remarked on the very noticeable attitude change from the hospital staff, especially from the gen pop nurses, who can be bossy. I think they thought--when we came here last time--that we were two punk American kids mucking up their orderly hospital floor, but since then I think one of the doctors on our case must have mentioned something about Kevin's condition to the nurses, because they've been much more kind and gentle with us this time around. After all, this surgery is no fucking joke and to have a second one on the heels of the last one must say volumes.
Wednesday, Kevin went into surgery. No freak outs for me this time. I just went back to my dorm room and passed the fuck out. It's been so crazy getting everything together for the trip, plus dealing with the move, that it was a relief to just sleep. Honestly, the weeks leading up to this second Germany trip were far more exhausting, stressful, and anxiety-inducing than dealing with this surgery a second time. I want to let Kevin talk about the big decision he made, but at one point Kevin was considering not getting this surgery at all to pursue a different course of treatment. The stress of making such a big decision, plus the fact we had just moved, and on top of that other family medical emergencies...
I don't mean to complain, especially now that it's all over with, but at one point I felt like some divine being was having a big laugh torturing us. Everything is ok now, but right around Halloween I thought I was going to completely lose it. A big thank you to all my awesome friends who walked me off the metaphorical ledge and got me to this point, with my sanity more or less intact. I've realized so much of this experience has been learning to give up foolish pride and admit that I'm not doing ok. Or realizing that sometimes I can't do it all, and that's ok. No matter who judges me or even if anyone is judging me at all, it shouldn't matter. All I can do, is do my best and be ok with it when people don't understand. It's been very hard but hey, that's why we keep this blog. Keep it honest, yo.
But enough of that. Knowing the drill made it easier to find Kevin after the surgery. I marched straight to the secretary's office and asked her to help me find Kevin. They didn't let me see him at first, because of the other patients in the room, but after a while they let me come in. I could tell the surgery was worse than before, because he was twitching and moaning, instead of the drugged stupor of last time. Prof. Rolle and his entourage of doctors stopped by, and he said the best thing was to let Kevin sleep. I rubbed Kevin's legs for a bit, which seemed to help distract him from the pain, plus I've been told that it helps with recovery. The room was very busy, with three patients and nurses coming and going, but I sat with Kevin while he slept for a few hours, until his nurse very gently kicked me out.
On Thursday, I felt that Kevin had improved noticeably from the day before. He was sitting up and was much more lucid, though he was still very nauseous. He always has problems with morphine, which is what he was primarily being given in ICU, so he was having a hard time keeping anything down. The pain was worse than the pain of his first surgery, and we repeatedly let his doctors and nurses know, but they didn't seem to think there was anything to be done. He improved as the day went on and by evening, they had switched him off the morphine to something else. I read several chapters of Divergent to him, which feels like a different flavor of Hunger Games (though not in a bad way at all). I plan to introduce poor, unsuspecting Kevin to all the lurid YA out there. He must partake of the cotton candy of the literary world, especially since I doubt I'll ever get him to read British murder mysteries, my other comfort reading food.
Friday is the day I locked myself out of my dorm room. I had visited Kevin earlier, his two roommates had been replaced by a lone female patient who stayed asleep the whole time I visited. As usual, Kevin was having problems sleeping at night, a fact that is exacerbated by jet lag and post-operation pain. Even I'm still going strong at 3:00 am in my dorm because of the jet lag. Kdramas and DS games, FTW! I ducked out after lunch to cook some of the groceries I had bought, and in the process, left my dorm keys in my room. The wind blew my door shut, and I discovered it was one of those lock-on-closure doors. Damn. Wearing pajama pants and slippers, I raced across the courtyard to the hospital reception area (it was still only 5:00pm or so) to see if they had spare keys, or anything. No such luck. The receptionist spoke a tiny bit of English and I spoke my tiny bit of German, and we managed to work it out. The power of sign and body language!
While I was waiting for the hospital handyman, I decided to duck upstairs to ICU and check on Kevin. The ICU nurse Mathias made fun of my slippers. Kevin was sitting up eating, but he complained of a weird scratching sensation on his back. Mathias and I took a look and his epidural line had fallen out completely!! I wonder if that was the reason he was in so much pain...
While we were examining his epidural line, Kevin was freaking out, for which I don't blame him. The suicide-inducing pain from last time was because his epidural line had broken. It was past 5:00 pm and apparently Chief Krassler was already gone and I didn't possess enough German to understand why Kevin's epidural couldn't be fixed. While we were fussing over the epidural line, Mathias suddenly noticed Kevin's wrist vein tap had also come loose and was spouting blood all over Kevin's gown, his sexy surgical stockings, and the blankets. Egads, what an evening it was turning out to be. One of the nurses joked that maybe the vein plug in Kevin's neck should come loose next. It does hang at a very precarious angle...
Finally, Kevin and I decided we would try calling Chief Krassler ourselves, rather than run the risk of Kevin enduring the excruciating pain of last time. However, as fate would have it, just as I was dashing out of the hospital to get my cell phone (which was the one thing that wasn't locked behind in my dorm room) I passed by Chief Krassler, who was on his way back in. I'm not sure if he was called back for another patient or whether our nurses called him, but mein Gott, it was good to see him. Long story short, no more epidural for Kevin. But they removed one of his chest tubes, which apparently is one of the main sources of pain, since every time Kevin breathes the wounded lung rubs up against it. I stayed with Kevin until closing time, to make sure the alternate painkillers he was being given were sufficient, but it looked like they worked. He and I texted back and forth till late that night...I pretty much polished off Heartstrings (AKA You've Fallen for Me). I cried a lot in the last two episodes, but not as much as when I watched Boys Over Flowers.
And now we arrive at today, Saturday, with Kevin being moved to gen pop! The nurse Karla remembers us from last time and has been extra kind to both of us, though unfortunately the pain management regimen is much less efficient than it was in ICU. Other than the pain, Kevin is able to get up and walk around on his own, he's been eating regularly and hasn't thrown up, and has already begun lung rehabilitation. We will probably be here for another week and a half, before we move to an awesome country farmhouse we found on Airbnb, less than a kilometer from Dresden proper. Did I mention how much I love Airbnb? So much cheaper than any hotel we could hope to find this time of year (most of the hotels are booked and/or are very expensive this time of year in Dresden.)
Welp, that's it for updates, thanks for reading everybody. I will continue to keep you guys posted. Definitely a better trip than last time, on many levels, as long as we can keep Kevin's pain levels manageable. Who knows, I might even get some writing work done *gasp*
As they say in Germany, tchuss!
My first blog post for the trip! I also want to thank everyone for their wonderful generosity with regards to our fundraiser. Seriously, you guys are awesome. We both have been saying that at any time we are feeling down, we just have to look at our fundraiser page and read the messages of love and support posted there, to remind us that we are not doing this alone, our friends and family love us, and that we can totally do this. We will get through this, one day at a time, and no matter what happens, you guys are here with us. So thank you all, for giving us the strength to deal with this cancer.
So great news, Kevin was moved out of ICU today, which means we are back in gen pop with our own room and can set up our internetz and laptops. It was harder to do that this time in ICU, as Kevin had roommates, first two older men and then a woman. But I'm getting ahead of myself. The main thing you need to know is--Kevin is out of ICU and doing well!
We got in on Monday night and went straight to the hospital. Normally, flying leaves me feeling grumpy and exhausted, but for whatever reason, I felt great when we arrived. Germany is beautiful this time of year! Well ok, Germany is just a beautiful country, end of story, but we both like the weather so much better this time of year. The air is crisp and cold, and the wind smells of comforting things--cozy fires, fallen leaves, and savory stews!
Tuesday, Kevin had his tests. He feels like an old hand at this now, and we know many of the nurses and doctors now. It's funny, we've both remarked on the very noticeable attitude change from the hospital staff, especially from the gen pop nurses, who can be bossy. I think they thought--when we came here last time--that we were two punk American kids mucking up their orderly hospital floor, but since then I think one of the doctors on our case must have mentioned something about Kevin's condition to the nurses, because they've been much more kind and gentle with us this time around. After all, this surgery is no fucking joke and to have a second one on the heels of the last one must say volumes.
Wednesday, Kevin went into surgery. No freak outs for me this time. I just went back to my dorm room and passed the fuck out. It's been so crazy getting everything together for the trip, plus dealing with the move, that it was a relief to just sleep. Honestly, the weeks leading up to this second Germany trip were far more exhausting, stressful, and anxiety-inducing than dealing with this surgery a second time. I want to let Kevin talk about the big decision he made, but at one point Kevin was considering not getting this surgery at all to pursue a different course of treatment. The stress of making such a big decision, plus the fact we had just moved, and on top of that other family medical emergencies...
I don't mean to complain, especially now that it's all over with, but at one point I felt like some divine being was having a big laugh torturing us. Everything is ok now, but right around Halloween I thought I was going to completely lose it. A big thank you to all my awesome friends who walked me off the metaphorical ledge and got me to this point, with my sanity more or less intact. I've realized so much of this experience has been learning to give up foolish pride and admit that I'm not doing ok. Or realizing that sometimes I can't do it all, and that's ok. No matter who judges me or even if anyone is judging me at all, it shouldn't matter. All I can do, is do my best and be ok with it when people don't understand. It's been very hard but hey, that's why we keep this blog. Keep it honest, yo.
But enough of that. Knowing the drill made it easier to find Kevin after the surgery. I marched straight to the secretary's office and asked her to help me find Kevin. They didn't let me see him at first, because of the other patients in the room, but after a while they let me come in. I could tell the surgery was worse than before, because he was twitching and moaning, instead of the drugged stupor of last time. Prof. Rolle and his entourage of doctors stopped by, and he said the best thing was to let Kevin sleep. I rubbed Kevin's legs for a bit, which seemed to help distract him from the pain, plus I've been told that it helps with recovery. The room was very busy, with three patients and nurses coming and going, but I sat with Kevin while he slept for a few hours, until his nurse very gently kicked me out.
On Thursday, I felt that Kevin had improved noticeably from the day before. He was sitting up and was much more lucid, though he was still very nauseous. He always has problems with morphine, which is what he was primarily being given in ICU, so he was having a hard time keeping anything down. The pain was worse than the pain of his first surgery, and we repeatedly let his doctors and nurses know, but they didn't seem to think there was anything to be done. He improved as the day went on and by evening, they had switched him off the morphine to something else. I read several chapters of Divergent to him, which feels like a different flavor of Hunger Games (though not in a bad way at all). I plan to introduce poor, unsuspecting Kevin to all the lurid YA out there. He must partake of the cotton candy of the literary world, especially since I doubt I'll ever get him to read British murder mysteries, my other comfort reading food.
Friday is the day I locked myself out of my dorm room. I had visited Kevin earlier, his two roommates had been replaced by a lone female patient who stayed asleep the whole time I visited. As usual, Kevin was having problems sleeping at night, a fact that is exacerbated by jet lag and post-operation pain. Even I'm still going strong at 3:00 am in my dorm because of the jet lag. Kdramas and DS games, FTW! I ducked out after lunch to cook some of the groceries I had bought, and in the process, left my dorm keys in my room. The wind blew my door shut, and I discovered it was one of those lock-on-closure doors. Damn. Wearing pajama pants and slippers, I raced across the courtyard to the hospital reception area (it was still only 5:00pm or so) to see if they had spare keys, or anything. No such luck. The receptionist spoke a tiny bit of English and I spoke my tiny bit of German, and we managed to work it out. The power of sign and body language!
While I was waiting for the hospital handyman, I decided to duck upstairs to ICU and check on Kevin. The ICU nurse Mathias made fun of my slippers. Kevin was sitting up eating, but he complained of a weird scratching sensation on his back. Mathias and I took a look and his epidural line had fallen out completely!! I wonder if that was the reason he was in so much pain...
While we were examining his epidural line, Kevin was freaking out, for which I don't blame him. The suicide-inducing pain from last time was because his epidural line had broken. It was past 5:00 pm and apparently Chief Krassler was already gone and I didn't possess enough German to understand why Kevin's epidural couldn't be fixed. While we were fussing over the epidural line, Mathias suddenly noticed Kevin's wrist vein tap had also come loose and was spouting blood all over Kevin's gown, his sexy surgical stockings, and the blankets. Egads, what an evening it was turning out to be. One of the nurses joked that maybe the vein plug in Kevin's neck should come loose next. It does hang at a very precarious angle...
Finally, Kevin and I decided we would try calling Chief Krassler ourselves, rather than run the risk of Kevin enduring the excruciating pain of last time. However, as fate would have it, just as I was dashing out of the hospital to get my cell phone (which was the one thing that wasn't locked behind in my dorm room) I passed by Chief Krassler, who was on his way back in. I'm not sure if he was called back for another patient or whether our nurses called him, but mein Gott, it was good to see him. Long story short, no more epidural for Kevin. But they removed one of his chest tubes, which apparently is one of the main sources of pain, since every time Kevin breathes the wounded lung rubs up against it. I stayed with Kevin until closing time, to make sure the alternate painkillers he was being given were sufficient, but it looked like they worked. He and I texted back and forth till late that night...I pretty much polished off Heartstrings (AKA You've Fallen for Me). I cried a lot in the last two episodes, but not as much as when I watched Boys Over Flowers.
And now we arrive at today, Saturday, with Kevin being moved to gen pop! The nurse Karla remembers us from last time and has been extra kind to both of us, though unfortunately the pain management regimen is much less efficient than it was in ICU. Other than the pain, Kevin is able to get up and walk around on his own, he's been eating regularly and hasn't thrown up, and has already begun lung rehabilitation. We will probably be here for another week and a half, before we move to an awesome country farmhouse we found on Airbnb, less than a kilometer from Dresden proper. Did I mention how much I love Airbnb? So much cheaper than any hotel we could hope to find this time of year (most of the hotels are booked and/or are very expensive this time of year in Dresden.)
Welp, that's it for updates, thanks for reading everybody. I will continue to keep you guys posted. Definitely a better trip than last time, on many levels, as long as we can keep Kevin's pain levels manageable. Who knows, I might even get some writing work done *gasp*
As they say in Germany, tchuss!
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