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!
Tuesday, November 13, 2012
Surgery Tomorrow and Thanks for the moneyz!
Thank you all for
the moneyz and lovez.
First off I have to say “OMG WTF holy shit” to reaching our
fundraiser goal within 1.5 days of the giveForward site going live…The original
idea was to reach the target by December 15th and to coincide with
our Germany trip/operation but I guess that was a gross underestimation of the
power of crowd sourcing. Thank you to everyone who either donated money or spread
the link around. I would have never reached the goal so quickly if it wasn’t
for you all. I was pleasantly surprised to see that it made it on reddit and some
of the comments totally made me laugh (the health care debate and the cancer troll/anti-troll
battles were incredible). The thoughtful comments/hugs you left me are really
something special. I have a hard time keeping my tears at bay when I read the messages
some of you posted.
Back at the
Fachkrankenhaus hospital in Coswig
It’s kind of weird coming back to a hospital routine only
3 months after originally leaving. It feels like my time back at home was a
dream and my reality is to be in this hospital recovering from some operation.
I did accomplish a lot in 3 months (we moved, a lot happened at work and I
resumed my gym routine of running and yoga) but it is a bit disheartening
knowing that I have to re-level my damaged body backup yet AGAIN. One big
improvement is the temperature. It is roughly around 40 degrees F. which is
amazing. This not only makes sleeping easier but it makes hanging out in the
hospital room a much more pleasant experience.
My operation is tomorrow morning so I am fairly nervous,
less so than before but I guess it’s normal since it’s a pretty major procedure
(5-6 hr long thoracotomy, fun fun). It’s also strange being very familiar with
the hospital staff and the strict time tables for all the tests (go German
efficiency). This time the nurses are treating me much better (I know many of
them by name now) and I bet that it’s also strange for them since I have
returned so quickly.
My pre-surgery
Tests and Results
Earlier I finished doing all the lung function tests and
my pre-surgery CT scan, same as before (lung capacity tests while sitting in a
small glass box, breathing through a tube while riding a bike and having blood
samples removed from my left ear). The results were apparently great! That’s good
news since after the tests the last time they thought that there was an issue
with my heart, which ended up not being the case.
Chief Krassler & Professor Rolle told me that my lung
function results were better than what it was before my last surgery…which is AWESOME
since I was afraid I would lose some noticeable lung capacity after a major
procedure like that (the power of the pewpews). I would be willing to bet that a combination
of my new diet/juicing routine along with my new meditation/yoga habit has
something to do with it.
When I mentioned the pain issues I had before Krassler brought
up a few solutions:
My epidural was not working
properly the last time so he is going to try a new spinal position. He is also going to give me stronger pain meds
and keep me in the ICU a day longer than before! (Yay for extra care, the ICU
is awesome compared to the normal ward AKA gen pop).
All this plus the colder temperature should make my
recovery much easier than the last (trying to stay optimistic here).
Surgery TOMORROW
I will probably not be posting until a few days after the
operation since I will be UNWELL but I figure you guys want to get your money’s
worth so I might be posting some extra gruesome
post-op pictures to compensate. Goodbye everyone and see you all on the
other side (of my anesthetic nap).
Friday, November 2, 2012
Preparing for round #2 and my first fundraiser
Hey all,
It’s been about 3 months since
my last post and now that I’m fully recovered it’s about that time for me
to go back for my left lung resection. I know what to expect this round so my
anxiety levels are not as high as before but the idea of going through
that very rough...and painful recovery again still sucks (but I hear its much easier the second time, we will see). I leave for Germany on November 11th
and will be back in the US mid-December…I won’t be starting work again until late December or most likely the New Year.
The last 3 months has been quite
the roller-coaster ride since I had to make the tough decision to continue with
surgeries rather than “trying” out these chemo drugs called TKI’s
(tyrosine-kinase inhibitors). There has been limited success with these drugs
and the potential for lots of really bad side effects including death. Even if
the drugs are successful my body could develop a tolerance and a “rebound”
effect could occur which causes the tumors to grow and metastasize at a faster
rate…which would put me in a much WORSE position. My friends on the
cureASPS.org forum have helped me make this decision since many of them have
had long term success going the surgery route. That's not it, I've also been worrying about
my dad who has been physically and mentally ill due to a number of factors and
I am trying to be there for him so he can quickly recover and BE THERE FOR ME DAMMIT.
Fundraiser time!
My friends/family have been asking me
for a way to help out and I’ve been telling them that I am going to throw some
kind of a big fundraiser…but that is a lot of work since it’s a big event that
needs to be planned and organized (which I am not opposed to doing, it just requires more
time and energy than I have right now). So my boss Chris D. sent me some great links to a few kickstarter-like fundraiser websites that I could easily put together and share
through facebook & email (making it as easy as possible for people to donate).
I picked Giveforward due to its simplicity and intuitive UI plus it’s mainly
focused around medical conditions. Connie wrote up a great bio for me and we
are launching the site alongside this blog post.
So here I am, shamelessly asking anyone who has some extra cash to
help me out since this cancer is eating up our funds rather quickly and this is my first step towards getting over my reluctance to ask people for assistance. If you are currently struggling with money please do not feel obligated to donate since we have financial back-up measures in place in case our situation gets insanely bad.
Here's the link:
Where is this money going?
-operation costs (since
insurance is not a sure thing)
-travel costs for treatment
(flights, hotels and food)
-co-pays (frequent UCLA visits)
-non-FDA approved chemo drugs
(Tyrosine-kinase inhibitors, if and when I start)
-ingredients for
juicing/blending (organic vegetables, fruits etc.)
-supplements (vitamin C,D, fish
oil, calcium, mushroom pills etc.)
-any extra money will be saved an go towards future treatments and diet (since eating healthy is expensive)
-any extra money will be saved an go towards future treatments and diet (since eating healthy is expensive)
So what else am I doing for my
health?
I have been religiously juicing since I got back from
Germany (2-3 times roughly 80-90 ounces a day)
My current juice
diet (greens and carrot heavy) roughly 90 ounces a day (3 times daily)
-beet with leaf
-kale, collard greens or rainbow
chard (or all 3!)
-spinach
-broccoli
-celery
-carrots
-lemon or orange
-1-2 small apples
-ginger (small chunk)
-organic omega-3 fish oil
(barleans or carlsons)
This recipe changes every week since I am trying to remove
sugars from the juice (ex. I used to put in many apples, oranges and pears, but
now I am down to only a couple fruits). My next step is to lessen the carrot content
since they have sugars as well….so yes NEED MORE GREENS.
I also rarely eat meat and sugars now and I try to stick to things like salads and vegetarian Asian foods. For snacks I
eat kiwis, bananas and apples and I make my own trail mix comprised of raw
organic cashews, almonds, walnuts and dried cranberries.
For exercise I have been doing Yoga twice a week and an
outdoor 4-5k jog once a week and I’ve developed a habit for mindfulness
meditation every morning ( I can do 15 minutes now, up from 10).
Last but not least, I have been seeing a great psychologist
who really got me into mindfulness and is helping me deal with this cancer
better and fight against depression.
Thanks for reading, my next post will most likely be from Germany.
-Kevin
Tuesday, August 7, 2012
Going Home
It's been three days since we got out of the hospital in Coswig, so I thought I'd write our last post before we come back home.
Home. That word sounds so good. I miss all of you, I miss my dog, I miss my house. I miss the routine of work, of being productive. I've done some scattered writing work here and there, but for the most part, it's been eat, sleep, read, spend time with Kevin, eat, sleep, read.
Since leaving the hospital, we've been staying at the charming Hotel Steigenberger in Dresden, overlooking the Frauenkirche Square. We ate here before we went into the hospital, and enjoyed the food and the view so much that we resolved to stay here, should we get out of the hospital early. So here we are!
The last few days has been uneventful. Mainly, we've been taking it easy and resting in the hotel room. It feels so good to be out of the hospital, plus Kevin needs to take it easy because of the pain. They deal with pain management differently here; the doctors were somewhat reluctant to give Kevin any painkillers but they issued him a box of Novamine before we left. A good thing, too, because it's been hard on poor Kevin.
I've said it before, but I'll say it again. Thoracotomies are painful surgeries. It's been hard for Kevin and hard for me to deal with it. I can't pretend to understand the pain Kevin is going through, and I think the pain might be especially bad because of the extent of surgery on Kevin's lung. Despite knowing this, it's hard not to be impatient with Kevin, to try not to say "Look! I know it hurts but you just have to deal with it and move on!" That's very easy to say for someone who is not in pain.
At the same time, I don't want to baby Kevin. Plus, I am not known for my patience or my tact. Not just that, but pain, like many other things, only grows worse if you become fixated on it. It's been a personal challenge to be patient and compassionate, yet not allow him to obsess about the pain. The more he thinks about it, the worse he gets, and he's even adopted pain-driven habits like lilting to one side or holding his arms affectedly to keep from jogging the painful side. I'm torn between wanting to let him deal with the pain in his own way while also wanting to push him to focus on things that will help him recover, like walk around or not talk/think about it.
Our first day back in Dresden, when I woke up I found him curled up dejectedly in an armchair, next to an open window. The A/C wasn't quite working in our room, but instead of dealing with it, he just moped in his chair. When I asked him how he was, it was about the heat and the pain. I got angry with him, then. I was tired of hearing about the heat and the pain. If the goddamn A/C wasn't working, then call the goddamn concierge. If it was too painful, then he could have asked me to do it for him. If the pain was too much for him to handle, then we needed to go back to the hospital. It started in anger, but at the core of it I was scared at seeing Kevin like this. We ended up having a good conversation that day. I wasn't and still am not very good at expressing myself in a non-confrontational, non-aggressive way when I'm upset, but in the end, I just care about Kevin and don't want him to let this disease or the pain get the better of him.
Kevin always reminded me when I came home bitching about work or someone I had personal conflicts with that life was just a series of problems. A designer won't agree with you? Well, then think of it as a challenge. How can you avoid conflict and achieve a solution that will satisfy both you and the other party? Want to throw a massive Bill and Ted-themed party for hundreds of people? Then draw up all the "features" you want, and figure out all the different problems you need to solve. Figure out how much help you'll need, the cost of items, who can supply ice, who is willing to DJ. Yeah, sure, life isn't that simple sometimes and I like to throw pity parties for myself as much as the next person, but in the end, I always have to ask myself, do I want to rage over someone who makes me upset, or freak out about a big task I've taken on, or be miserable about a situation I'm in? Hell fucking no. I'm going to put my problem solving hat on and do or die.
Pain is just another problem we have to solve. Luckily for us, time will eventually make it better as Kevin heals up, but that's not to say it won't come back. After all, there are more surgeries in Kevin's future. I am so glad we had our honest conversation about this.
We've continued to take it easy, been watching lots of movies in our hotel room and walking around beautiful Dresden, but goddamn, I am looking forward to coming home. It's strange to think we've been in Germany for a month, now. I like reading FB feeds when we can spare the bandwidth, and seeing how all of you are doing, but I'd much, much rather see you all in person, and hear from you directly what you've been up to. I feel like for a month we've been shut up in a cancer capsule and launched into German space. It will be so good to be finally, finally, home.
T-minus 2 days. See you all soon.
Home. That word sounds so good. I miss all of you, I miss my dog, I miss my house. I miss the routine of work, of being productive. I've done some scattered writing work here and there, but for the most part, it's been eat, sleep, read, spend time with Kevin, eat, sleep, read.
Since leaving the hospital, we've been staying at the charming Hotel Steigenberger in Dresden, overlooking the Frauenkirche Square. We ate here before we went into the hospital, and enjoyed the food and the view so much that we resolved to stay here, should we get out of the hospital early. So here we are!
The last few days has been uneventful. Mainly, we've been taking it easy and resting in the hotel room. It feels so good to be out of the hospital, plus Kevin needs to take it easy because of the pain. They deal with pain management differently here; the doctors were somewhat reluctant to give Kevin any painkillers but they issued him a box of Novamine before we left. A good thing, too, because it's been hard on poor Kevin.
I've said it before, but I'll say it again. Thoracotomies are painful surgeries. It's been hard for Kevin and hard for me to deal with it. I can't pretend to understand the pain Kevin is going through, and I think the pain might be especially bad because of the extent of surgery on Kevin's lung. Despite knowing this, it's hard not to be impatient with Kevin, to try not to say "Look! I know it hurts but you just have to deal with it and move on!" That's very easy to say for someone who is not in pain.
At the same time, I don't want to baby Kevin. Plus, I am not known for my patience or my tact. Not just that, but pain, like many other things, only grows worse if you become fixated on it. It's been a personal challenge to be patient and compassionate, yet not allow him to obsess about the pain. The more he thinks about it, the worse he gets, and he's even adopted pain-driven habits like lilting to one side or holding his arms affectedly to keep from jogging the painful side. I'm torn between wanting to let him deal with the pain in his own way while also wanting to push him to focus on things that will help him recover, like walk around or not talk/think about it.
Our first day back in Dresden, when I woke up I found him curled up dejectedly in an armchair, next to an open window. The A/C wasn't quite working in our room, but instead of dealing with it, he just moped in his chair. When I asked him how he was, it was about the heat and the pain. I got angry with him, then. I was tired of hearing about the heat and the pain. If the goddamn A/C wasn't working, then call the goddamn concierge. If it was too painful, then he could have asked me to do it for him. If the pain was too much for him to handle, then we needed to go back to the hospital. It started in anger, but at the core of it I was scared at seeing Kevin like this. We ended up having a good conversation that day. I wasn't and still am not very good at expressing myself in a non-confrontational, non-aggressive way when I'm upset, but in the end, I just care about Kevin and don't want him to let this disease or the pain get the better of him.
Kevin always reminded me when I came home bitching about work or someone I had personal conflicts with that life was just a series of problems. A designer won't agree with you? Well, then think of it as a challenge. How can you avoid conflict and achieve a solution that will satisfy both you and the other party? Want to throw a massive Bill and Ted-themed party for hundreds of people? Then draw up all the "features" you want, and figure out all the different problems you need to solve. Figure out how much help you'll need, the cost of items, who can supply ice, who is willing to DJ. Yeah, sure, life isn't that simple sometimes and I like to throw pity parties for myself as much as the next person, but in the end, I always have to ask myself, do I want to rage over someone who makes me upset, or freak out about a big task I've taken on, or be miserable about a situation I'm in? Hell fucking no. I'm going to put my problem solving hat on and do or die.
Pain is just another problem we have to solve. Luckily for us, time will eventually make it better as Kevin heals up, but that's not to say it won't come back. After all, there are more surgeries in Kevin's future. I am so glad we had our honest conversation about this.
We've continued to take it easy, been watching lots of movies in our hotel room and walking around beautiful Dresden, but goddamn, I am looking forward to coming home. It's strange to think we've been in Germany for a month, now. I like reading FB feeds when we can spare the bandwidth, and seeing how all of you are doing, but I'd much, much rather see you all in person, and hear from you directly what you've been up to. I feel like for a month we've been shut up in a cancer capsule and launched into German space. It will be so good to be finally, finally, home.
T-minus 2 days. See you all soon.
Wednesday, August 1, 2012
My Final Week in the Hospital!
Hey All,
This week was great since I am now wireless again! Yea, no more having to wheel around my spinal epidural painkiller. I am still trying to break my mental conditioning of looking for wires whenever I have to get up and feeling tethered to something. I am finally only on oral painkillers and have been feeling much better about moving out and about (stairs still make me tired like an old man).
Monday was the day my epidural was removed so I walked with Connie to the nearby "kaufland" market which was a great workout for me and the short lived rainstorm at the nearby food stand (German speaking Asian guy making Asian foods) was a great bonus. This was also my first non-hospital meal since my surgery (mmm grilled veggies with sauce and white rice). My pain levels were very low and only spiked occasionally (mainly when I stretch/move too much). Jussi also flew back to Finland this morning and has to fly to Vancouver, Canada in 2 weeks for cryoablation removal of more tumors. I might also have to do this in the future, we will see how far a consistent aggressive anticancer diet will take me before the cancer makes the next move
.
Here's a pic of my delicious scar after they removed my bandages:
Tuesday (July 31st, 2012) was the first day since surgery where I left the hospital area and forgot about my giant cut.
Here is a pic which sums it up ( Yes, beer is a great painkiller!) Bier von Fass!:
Our ICU nurse friend Markus took us to see Moritzburg Castle which was about a 15 minute drive from the hospital. http://en.wikipedia.org/wiki/Moritzburg_Castle
This castle was the real house Baratheon (if you get the Game of Thrones reference). It was completely themed out with stag heads (with different metal designs wrapping around the heads) and it was an epic hunting lodge for Augustus the Strong. http://en.wikipedia.org/wiki/Augustus_II_the_Strong
Here are a few pics of the day, I can't post many since bandwidth is freaking expensive:
The doc told me today that he is discharging me this Friday! Which is great since we can enjoy a bit more of Germany and I can finish my recovery outside of the hospital. Painkillers to-go please...aaand after one of the head nurses adjusted my wound with her finger and patched it up, she told me that I can take a real SHOWER!!!!!! Which I am excited to do after this post.
Thanks again to everyone who has posted comments and useful information. I am also honored to have Ivan (ASPS patient #1) and Olga posting on this blog. They have experienced this procedure/hospital experience multiple times and their posts on the cureasps.org forum have given me much hope when I was feeling down about the scary Thoracotomy.
This week was great since I am now wireless again! Yea, no more having to wheel around my spinal epidural painkiller. I am still trying to break my mental conditioning of looking for wires whenever I have to get up and feeling tethered to something. I am finally only on oral painkillers and have been feeling much better about moving out and about (stairs still make me tired like an old man).
Monday was the day my epidural was removed so I walked with Connie to the nearby "kaufland" market which was a great workout for me and the short lived rainstorm at the nearby food stand (German speaking Asian guy making Asian foods) was a great bonus. This was also my first non-hospital meal since my surgery (mmm grilled veggies with sauce and white rice). My pain levels were very low and only spiked occasionally (mainly when I stretch/move too much). Jussi also flew back to Finland this morning and has to fly to Vancouver, Canada in 2 weeks for cryoablation removal of more tumors. I might also have to do this in the future, we will see how far a consistent aggressive anticancer diet will take me before the cancer makes the next move
.
Here's a pic of my delicious scar after they removed my bandages:
Tuesday (July 31st, 2012) was the first day since surgery where I left the hospital area and forgot about my giant cut.
Here is a pic which sums it up ( Yes, beer is a great painkiller!) Bier von Fass!:
Our ICU nurse friend Markus took us to see Moritzburg Castle which was about a 15 minute drive from the hospital. http://en.wikipedia.org/wiki/Moritzburg_Castle
This castle was the real house Baratheon (if you get the Game of Thrones reference). It was completely themed out with stag heads (with different metal designs wrapping around the heads) and it was an epic hunting lodge for Augustus the Strong. http://en.wikipedia.org/wiki/Augustus_II_the_Strong
Here are a few pics of the day, I can't post many since bandwidth is freaking expensive:
It's comforting hanging out with an ICU nurse, he can resuscitate me if I fall or something.
Connie found a doggy.
Epic street shot from the Castle.
Connie running through the epic garden before the hunting grounds.
iiiiiiii'ts Connie!
The castle is surrounded by a large moat.
The castle is also surrounded by great pubs.
A description for tourists. (Wikipedia is better)
Connie and I sitting, Markus took the pic.
9PM Sunset view from my hospital room.
The doc told me today that he is discharging me this Friday! Which is great since we can enjoy a bit more of Germany and I can finish my recovery outside of the hospital. Painkillers to-go please...aaand after one of the head nurses adjusted my wound with her finger and patched it up, she told me that I can take a real SHOWER!!!!!! Which I am excited to do after this post.
Thanks again to everyone who has posted comments and useful information. I am also honored to have Ivan (ASPS patient #1) and Olga posting on this blog. They have experienced this procedure/hospital experience multiple times and their posts on the cureasps.org forum have given me much hope when I was feeling down about the scary Thoracotomy.
Sunday, July 29, 2012
Getting Lost in Coswig
Thanks for all the support, guys. I appreciate it, we both do. I think being able to write stuff down in this blog also helps a bunch, though I was feeling pretty embarrassed and sheepish about it afterwards. But Kevin was like, "WTF, we've been through cancer and you're feeling shy about a blog! C'mon! No shame!" and I was like, "You're right! No shame!" But thanks all for the kind words.
Since Kevin was feeling a lot better, I decided to take a ramble about town. Since we've been mainly posting grisly things about cancer and surgeries and being mentally bummed about cancer, I thought I'd write a normal, boring post about what it's like here and insert some photos so you guys can have a glimpse of what it's like here. (Ps: I uploaded the photos as an album on my FB, so apologies if these are dupes of what you've already seen)
I don't know jack about Coswig except that it's close to Dresden and has a hospital that is the leading center for thoracic surgeries. Also, the cafeteria (kantine) food is pretty decent as hospital food goes, but it's closed on weekends. I've already decided that I am going to eat a butt load of sushi when I get home. Kevin (the human, not the cat) concurs.
The heat finally let up, which not only improves the environs, but also moods. I woke up early, did 45 minutes of yoga in my dorm room, did another round of laundry for Kevin in my shower, and made myself yet another bread, pate, and salami sandwich in my room. I even went so far as to add some cucumber slices. I am going to miss super cheap, delicious pate when I go home. Also, I am getting better at doing laundry by hand. Being a pampered suburban brat, I have never done laundry without the aid of a machine. Also, Kevin is extra stinky. I don't call him my stinky tomcat for nothing. The first load (whites and grays) turned out okay but now that I am less pissy about doing laundry ("What? I have two degrees, speak three languages, am a games industry professional, and you want me to do... laundry!? You'll pay for bandwidth but not laundry service???" I keed, I keed. I was joking. Mostly.) I was determined to do better with the next load. The trick is to pre-scrub the stinky areas with bars of soap, rinse, then stir and soak with detergent, and then drain and rinse/soak a third time in clean water. It also takes FUCKING FOREVER. In my book, washing machines are now up there with air conditioning, the internet, and iPhones.
Then I started off for the hospital to see Kevin, a very short gravel/cobblestone walk through a bit of forest. Kevin's down to 4.0 on his epidural painkiller, which is really great progress. They also stopped one of his oral painkillers, the crazy effective-for-24-hours-and-not-approved-by-the-FDA-in-the-US one. He's feeling it a little bit, but not anything like what we experienced earlier this week. Thank the stars aligned for that.
I think being at the hospital has made both of us pretty antsy, but unfortunately Kevin is stilled tethered to his epidural. However, with the weather having cooled down, Kevin was feeling up to a nap so I thought this was a good opportunity for me to get outside and work out some of the anxiety I've had from being cooped up for the last week or so. I'm hoping Kevin can join me later this week!
I grabbed my Trader Joe reusable shopping bag (something I'm going to recommend on the guide I'm working on for English speakers who come to this hospital for similar procedures) and set off for a mild adventure. There were some ominous clouds looming ahead, but after about 2 weeks of being here, I realized the weather is very similar to Japan. Liable to change at any minute, but with the way the winds were blowing, no rain shower was going to last longer than 10 minutes.
Once I got out of the main road leading up the hospital I just turned down a side street and started walking. My vague goal was to get lost in the suburban area near the hospital, using the church spire we could see from our hospital room as a directional guide.
I took this shot with my iPhone after I'd been wandering towards it for a while. I found the railroad tracks and followed the path next to it. I suppressed to urge to play with several dogs on the way. I think several of the people around here think of me as the crazy foreigner who speaks no Deutsche but lavishes affection on their dogs.
The area is really lush with greenery, especially this time of year. It rained nonstop when we got here and was actually a bit cold (SF cold) before it turned muggy and hot. Most of the homes in the area seem to have gorgeous gardens. Here's a sassy, splendid example:
After picking my way through several apartment buildings, I ran into a freakin' sweet playground. It had all sorts of cool structures to climb up on, including a well with a chain ladder that you could climb down into, a bridge made of logs that was actually pretty sturdy, and some wigwam-looking structures.
After threading my way through more apartment buildings I stumbled onto what seemed to be the main street. But it was Sunday, so almost everything was closed. Except for a schwarma place. With the cafeteria closed, I bought me some foodz for lunch/dinner and continued onward. I also bought a very interesting salty yogurt drink. Hm.
Meanwhile, I kept trying to make it towards the church spire.
Got sidetracked by a boarded up old building that looked interesting purely because its windows were broken and boarded up. I wonder if anyone lives in there or if it's still being used for something. I can see cloth peeking through the top windows, but the doors are all boarded up... SOME KIND OF GRISLY HORROR/GHOST STORY, PERHAPS?
Since Kevin was feeling a lot better, I decided to take a ramble about town. Since we've been mainly posting grisly things about cancer and surgeries and being mentally bummed about cancer, I thought I'd write a normal, boring post about what it's like here and insert some photos so you guys can have a glimpse of what it's like here. (Ps: I uploaded the photos as an album on my FB, so apologies if these are dupes of what you've already seen)
I don't know jack about Coswig except that it's close to Dresden and has a hospital that is the leading center for thoracic surgeries. Also, the cafeteria (kantine) food is pretty decent as hospital food goes, but it's closed on weekends. I've already decided that I am going to eat a butt load of sushi when I get home. Kevin (the human, not the cat) concurs.
The heat finally let up, which not only improves the environs, but also moods. I woke up early, did 45 minutes of yoga in my dorm room, did another round of laundry for Kevin in my shower, and made myself yet another bread, pate, and salami sandwich in my room. I even went so far as to add some cucumber slices. I am going to miss super cheap, delicious pate when I go home. Also, I am getting better at doing laundry by hand. Being a pampered suburban brat, I have never done laundry without the aid of a machine. Also, Kevin is extra stinky. I don't call him my stinky tomcat for nothing. The first load (whites and grays) turned out okay but now that I am less pissy about doing laundry ("What? I have two degrees, speak three languages, am a games industry professional, and you want me to do... laundry!? You'll pay for bandwidth but not laundry service???" I keed, I keed. I was joking. Mostly.) I was determined to do better with the next load. The trick is to pre-scrub the stinky areas with bars of soap, rinse, then stir and soak with detergent, and then drain and rinse/soak a third time in clean water. It also takes FUCKING FOREVER. In my book, washing machines are now up there with air conditioning, the internet, and iPhones.
Then I started off for the hospital to see Kevin, a very short gravel/cobblestone walk through a bit of forest. Kevin's down to 4.0 on his epidural painkiller, which is really great progress. They also stopped one of his oral painkillers, the crazy effective-for-24-hours-and-not-approved-by-the-FDA-in-the-US one. He's feeling it a little bit, but not anything like what we experienced earlier this week. Thank the stars aligned for that.
I think being at the hospital has made both of us pretty antsy, but unfortunately Kevin is stilled tethered to his epidural. However, with the weather having cooled down, Kevin was feeling up to a nap so I thought this was a good opportunity for me to get outside and work out some of the anxiety I've had from being cooped up for the last week or so. I'm hoping Kevin can join me later this week!
I grabbed my Trader Joe reusable shopping bag (something I'm going to recommend on the guide I'm working on for English speakers who come to this hospital for similar procedures) and set off for a mild adventure. There were some ominous clouds looming ahead, but after about 2 weeks of being here, I realized the weather is very similar to Japan. Liable to change at any minute, but with the way the winds were blowing, no rain shower was going to last longer than 10 minutes.
Once I got out of the main road leading up the hospital I just turned down a side street and started walking. My vague goal was to get lost in the suburban area near the hospital, using the church spire we could see from our hospital room as a directional guide.
I took this shot with my iPhone after I'd been wandering towards it for a while. I found the railroad tracks and followed the path next to it. I suppressed to urge to play with several dogs on the way. I think several of the people around here think of me as the crazy foreigner who speaks no Deutsche but lavishes affection on their dogs.
The area is really lush with greenery, especially this time of year. It rained nonstop when we got here and was actually a bit cold (SF cold) before it turned muggy and hot. Most of the homes in the area seem to have gorgeous gardens. Here's a sassy, splendid example:
After picking my way through several apartment buildings, I ran into a freakin' sweet playground. It had all sorts of cool structures to climb up on, including a well with a chain ladder that you could climb down into, a bridge made of logs that was actually pretty sturdy, and some wigwam-looking structures.
 |
| I feel sorry for Irvine kids with their plastic, child-safe playgrounds, in boring sand. |
Meanwhile, I kept trying to make it towards the church spire.
Got sidetracked by a boarded up old building that looked interesting purely because its windows were broken and boarded up. I wonder if anyone lives in there or if it's still being used for something. I can see cloth peeking through the top windows, but the doors are all boarded up... SOME KIND OF GRISLY HORROR/GHOST STORY, PERHAPS?
Then I rounded the corner and made it to the church. Hooray!
What is this symbol? Does anyone know?
At this point, some dark clouds moved directly over me and gusts of wind were starting to blow. Armed with only schwarma and a reinforced plastic grocery bag, I try the church doors. So much for sanctuary. Despite it being Sunday (or perhaps because), this church is closed. But luckily, it's not coming down too hard and I escape the worst of it huddled under some trees, using my grocery bag as cover.
In about 15 minutes it looks like this:
Welp, since I've reached my destination I decide it's time to head back, using the most circular, roundabout way back I can think of. The sky is getting steadily darker and while I don't mind getting wet, I do mind replacing my iPhone. I've seen it come down hard when the clouds get this bleak-looking. Plus, I am wearing suede flats. Call it feminine vanity, if you will.
On the roundabout way back I run into a farm of some sorts, with horse and some geese. The horse flirts with me, extending its head out past the railing and flitting from side to side. Honestly, it probably thought I had apples or sugar, or whatever it is horses crave, in my bag. It started munching on the grass in front of my feet. I debate whether it will bite me if I pet its nose and also whether it will get sick if I feed it shit from my schwarma wrap. There are also some fucking angry geese honking at me nonstop.
"Oh yeah!? Whadda ya think you're lookin' at, punk?"
"I'm a horse. Dupe dupe dupe dupe."
I get so distracted by the animals, I fail to notice the sky has darkened considerably. Enter rainstorm #2. Except now I'm on a suburb street lined with dinky trees, and it's really coming down hard. I duck under the least wussy-looking one, and hope bugs don't fall on me. There's some gnarly looking fruit/nuts on this tree, spiky and fuzzy all at once. I really, really hope bugs don't fall on me. As the rain comes down harder, I give up. Luckily one of the houses next to the tree I'm standing under has a car port and the gate is open. I dash for cover and hope the people aren't home.
The last leg of this mini-adventure is pretty uneventful. The rain eventually stops after coming down hard, but it only lasts ten minutes, tops. I decide I better stop circling around and should head back towards the hospital in earnest, but I have no idea where I am. That was kinda the point when I started. So I pick the direction that I think I need to head back towards and cross apartment building courtyards and random little side roads, just so that I'm in a direct line back (I think).
Then I start to get worried, because I kinda have a terrible sense of direction, but fortuitously a pug walks by and distracts me. Add one more Coswig resident who thinks I'm weird. But it was SOOOOO CUTE and I love pugs! I decide if the next corner doesn't work out, I'm going to try and ask someone directions.
But round the bend I go and lo and behold, it's Kaufland! The supermarket where I pick up delicious cheap pate, salami, and bread. I know how to get back from here.
I make it back to the hospital, and who's waiting for me?
KEVIN, that's who!
I'd been trying to find him again for a while now. I wanted to get a good shot of him, he was such a pretty and friendly kitty. But every time I dropped low to take a picture, he'd come up and try and rub up against me. Since the other Kevin is deathly allergic to cats and is recovering from lung surgery, I thought it would be better not to uh, induce any asthma attacks.
But then, I guess I should have known better. Cats always win.While I was trying to get a decent shot, Kevin did this:
It's like he just knew I was trying to avoid coming into contact with him. He was also a bit wet. Did that stop him from curling up in my lap and nuzzling his darling little head into my arm, and kneading his cute little white paws into my leg?
Of course not.
"I'm a cute bastard and I know it. Kinda like the other Kevin"
I ended up spending the next 10-15 minutes assiduously picking cat hair off the front of my shirt and jeans, before deciding I better just go back and change.
What is this symbol? Does anyone know?
At this point, some dark clouds moved directly over me and gusts of wind were starting to blow. Armed with only schwarma and a reinforced plastic grocery bag, I try the church doors. So much for sanctuary. Despite it being Sunday (or perhaps because), this church is closed. But luckily, it's not coming down too hard and I escape the worst of it huddled under some trees, using my grocery bag as cover.
In about 15 minutes it looks like this:
Welp, since I've reached my destination I decide it's time to head back, using the most circular, roundabout way back I can think of. The sky is getting steadily darker and while I don't mind getting wet, I do mind replacing my iPhone. I've seen it come down hard when the clouds get this bleak-looking. Plus, I am wearing suede flats. Call it feminine vanity, if you will.
On the roundabout way back I run into a farm of some sorts, with horse and some geese. The horse flirts with me, extending its head out past the railing and flitting from side to side. Honestly, it probably thought I had apples or sugar, or whatever it is horses crave, in my bag. It started munching on the grass in front of my feet. I debate whether it will bite me if I pet its nose and also whether it will get sick if I feed it shit from my schwarma wrap. There are also some fucking angry geese honking at me nonstop.
"Oh yeah!? Whadda ya think you're lookin' at, punk?"
"I'm a horse. Dupe dupe dupe dupe."
I get so distracted by the animals, I fail to notice the sky has darkened considerably. Enter rainstorm #2. Except now I'm on a suburb street lined with dinky trees, and it's really coming down hard. I duck under the least wussy-looking one, and hope bugs don't fall on me. There's some gnarly looking fruit/nuts on this tree, spiky and fuzzy all at once. I really, really hope bugs don't fall on me. As the rain comes down harder, I give up. Luckily one of the houses next to the tree I'm standing under has a car port and the gate is open. I dash for cover and hope the people aren't home.
The last leg of this mini-adventure is pretty uneventful. The rain eventually stops after coming down hard, but it only lasts ten minutes, tops. I decide I better stop circling around and should head back towards the hospital in earnest, but I have no idea where I am. That was kinda the point when I started. So I pick the direction that I think I need to head back towards and cross apartment building courtyards and random little side roads, just so that I'm in a direct line back (I think).
Then I start to get worried, because I kinda have a terrible sense of direction, but fortuitously a pug walks by and distracts me. Add one more Coswig resident who thinks I'm weird. But it was SOOOOO CUTE and I love pugs! I decide if the next corner doesn't work out, I'm going to try and ask someone directions.
But round the bend I go and lo and behold, it's Kaufland! The supermarket where I pick up delicious cheap pate, salami, and bread. I know how to get back from here.
I make it back to the hospital, and who's waiting for me?
KEVIN, that's who!
I'd been trying to find him again for a while now. I wanted to get a good shot of him, he was such a pretty and friendly kitty. But every time I dropped low to take a picture, he'd come up and try and rub up against me. Since the other Kevin is deathly allergic to cats and is recovering from lung surgery, I thought it would be better not to uh, induce any asthma attacks.
But then, I guess I should have known better. Cats always win.While I was trying to get a decent shot, Kevin did this:
It's like he just knew I was trying to avoid coming into contact with him. He was also a bit wet. Did that stop him from curling up in my lap and nuzzling his darling little head into my arm, and kneading his cute little white paws into my leg?
Of course not.
"I'm a cute bastard and I know it. Kinda like the other Kevin"
I ended up spending the next 10-15 minutes assiduously picking cat hair off the front of my shirt and jeans, before deciding I better just go back and change.
Human Kevin is still lying peacefully on his bed, trying to get some shut eye. There are two puppies barking right outside his window (of course). All is right with the world, a perfect end for a very pleasant day.
Saturday, July 28, 2012
Honest Confessions
Man, what a week.
Kevin's surgery was last Thursday and it's now the following Saturday (I thought today was Thursday, which should tell you something about the time distortion you experience when you're in a hospital). Professor Rolle is very pleased with Kevin's progress and his lung is expanding at normal capacity again (mayhaps a wee bit too normally; the doctors think that might have contributed to Kevin's pain as the damaged lungs kept expanding against the tubes in his chest and against his broken ribs). We budgeted for 15-18 days between surgery and our departure date, but it looks like Kevin may be discharged at the two week mark (next Thursday), which is great news! If we can leave the hospital earlier, we'll probably head to Dresden and enjoy a few more days there before finally coming home. When I get home, I'm going to hug every puppy I run into and snuggle my geriatric pooch until even his needy little self is satiated.
It's been a tough week, much tougher for Kevin than it was for me, but let's just say there have been a lot of mental ups and downs for the both of us. It is so hard seeing someone you've always known to be full of life and energy experiencing the worst pain of their lives. It's even worse knowing you can't really do anything about it. Not to mention the mind-numbing monotony of hospital routine: wake up, drag self to hospital, shuffle up something to eat, sit in hospital room, leave for cafeteria when it opens, come back, sit in hospital room some more, go back to the dorm and sleep when visiting hours are over, rinse and repeat.
The first few days Kevin was either so drugged up he couldn't do anything, couldn't focus on a screen, couldn't draw, didn't want to be read to--nothing, except maybe some light conversation. And it's so hard to rustle up light conversation when you're sitting in a hospital room and have been sitting there, worrying and waiting. The hospital chairs here are also very uncomfortable, which adds insult to injury. I don't see many people attending their loved ones here, small wonder why!
It was really hard for me, especially the first few days after surgery. Kevin has always been my best and most favorite companion. We almost always find something to talk about and his positive energy and fucked up humor always makes me smile and gives me the energy to move forward in life. But this was a very major surgery, more than most people experience in their entire lives, and Kevin quite possibly now holds the world record for number of tumors removed from a lung in a single surgery. It's crazy to think we'll probably have to do this a few more times. Man, Kevin really is fucking incredible.
It was so hard to see him going through what he had to go through, especially once he was removed from ICU and put back into general populace and the painful process of healing began in earnest. It took the light out of him. The pain made him fretful. I'd never see Kevin like this. Sure, sometimes he'd come home from work and be down about something that happened, but Kevin is an even-keeled fellow who is a world-class problem solver. I just had to listen and he'd fix things himself.
During those first few days, I didn't know what to do at times. I didn't know how to deal with my companion who up till now had always been healthy, vigorous, and full of mental strength. Other times, I didn't want to be there. It wasn't that I had anywhere else I'd rather be, I just wanted to not be there. I just wanted to be somewhere else, alone, away from it all. Then I would feel horribly guilty for nursing these thoughts, I felt disloyal towards Kevin. He was in pain, suffering, alone in a hospital where nobody really spoke English. All he had was me, and sometimes I wanted to not be there.
It's really hard to write these things, but you know, I think it's really important to. Kevin and I have always tried to be honest, about our feelings and our thoughts. I still harbor guilt over certain things from these last few days, but looking back I don't want to be ashamed, I want to be stronger for the next time we are here. I want to be stronger, period. I wish I could say I had been super strong and had stayed by Kevin's side 24/7, radiating cheerful energy the whole time. I wish I could have been that strong, but in the end, I could only do the best I could. I still came and saw Kevin every day, sat by his side for the majority of every day. But inside I would be upset. All sorts of thoughts went through my head. I can't do this. I'm tired of this hospital room. I don't want to wait on Kevin, he's got nurses for this shit. I want to go for a walk, I want to talk to other people. It's too much of a burden to have to be here for Kevin, all the time. It's not fair. Is this what my life is going to be? Is this what my marriage is going to be? I thought I could deal with this, but I can't.
When it got too much, I would say goodbye to Kevin and go back to my dorm and stare at the ceiling. Sometimes I'd try to read. Mostly, I'd sleep, because at least when I was asleep I'd have a break from these thoughts and I'd be able to get up with renewed energy and could once again look forward to seeing Kevin.
Even though we had a courthouse wedding and everything was really rushed, I thought a lot about those words, "...in sickness and in health." I'd only ever known Kevin in health, and I loved that Kevin. I wanted to be around laughter and happiness, not sickness and depression. I didn't want to be dragged down. But in the end, I knew Kevin needed me. Oh sure, he'd survive if I didn't show up at the hospital. He could even tell, sometimes from my face, when I needed to get away, and would tell me it was fine, to take some time for myself. That made the guilt worse, but it didn't make how I felt better. Maybe I deserved to suffer, for having those thoughts.
But now that Kevin is much better, I'm trying to sort through everything I thought and felt these last few days and come to terms with it. I don't want to make excuses, but I also don't want to feel guilty. In the end, the most important thing is Kevin. I want him to be healthy and happy. I want him to be able to rely on me. Even when I was feeling my worst, I wanted those things for Kevin. I've said it before, there will be good times and bad times, but I think I was just saying that before. I don't think I really understood what that meant until after this week. I guess you could say I learned a lot about myself. You just don't know. I don't want to ignore all the bad things and only talk about good things, because that wouldn't be real. Kevin and I have so many good times, it's only natural there are bad times too.
Ok, all of this was pretty hard to admit openly on a public blog, but I wanted to do this for myself. Cancer is fucking hard to deal with. But I think next time will be better. I think I can be a stronger person, for myself and for Kevin.
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