my-kidney-cancer-blog

Happy New Year Fellow Cancer Warriors

Thu, 30 Dec 2010 01:51:18 +0100

Oh well, 2010 is almost over. For some reason I’ve been thinking about my kidney cancer a lot lately. It has nothing to do with fear or anything like that. I guess one of the things that still confuses me is as to why I was diagnosed with renal cell carcinoma, what was it caused by. As I said before, there is no way to conclusively determine the cause of kidney cancer. However, when I met with my oncologist at New York Presbyterian we both agreed that a potential cause could have been my exposure to asbestos about 20 years ago.

Let me back up a little here to explain the context. As you know, I’m a native German who relocated to the United States back in 2005. So when I was in my late teens I was working on this construction project which required me to cut and trim asbestos sheet rock all day long. That stuff was very popular around that time and used for all kinds of insulation purposes. I didn’t wear any protection gear and therefore ingested and inhaled little pieces of asbestos over a prolonged time period.

Kidney cancer, mesothelioma and some lung cancers have one thing in common. They all grow very slowly with latencies up to five decades. Now let’s fast forward 20 years. The first symptoms of kidney cancer I encountered were this weird kind of dull pain in both sides of my lower back alongside some general discomfort. I wouldn’t call it nausea, but I was inadequately tired all the time. Nonetheless, I didn’t think too much of it. Because in addition to that, I was also working on fixing our patio, which required me to do some heavy lifting – certainly not something I’m used to as I’m usually sitting on my butt all day long in my office.

But the blood in the urine plus those little pieces of bloody tissue that I discharged suddenly eventually prompted me to see an urologist. Well, you know the story, a cystoscopy and Cat-Scan later I received my kidney cancer diagnosis. The left kidney was then removed via a laparoscopic radical nephrectomy in late November of 2010.

My latest scan came back clear, so I guess I can start into the new year cancer-free. My wife is scheduled for another round of ultrasound imaging at Dr. Bard in NYC in early January. If that comes back clear we have reason to celebrate. Because that would bring us to the magical 2 year mark. After 2 years, the risk of recurrence drops significantly. So that would be a major milestone. I’m still very scared thinking about my wife’s breast cancer. She is in great shape, as you know she had radically changed her life-style, living and eating very healthy alongside all the supplements that she’s taking rigorously. I am not as strict as she is, however, I stick to my principles: no alcohol, no meat, cutting out all crappy foods to the extent possible, trying to eat a lot of raw organic food.

A lot of people ask me why I believe in alternative cancer treatments. I actually don’t like to talk about it because most of the time I get weird reactions. A lot of people don’t agree with me that cancer is not something that just randomly happens. I don’t think that things just happen for no reason. And further to that, I do believe that the stuff we put inside our bodies and the way we treat them has a major impact on our health. Hence, cancer can be treated by eating right, boosting the immune system and supplementing it with natural substances that are proven cancer fighters.

Am I against conventional cancer treatment options? No, of course not. I opted to have my kidney removed. And after all, surgery is a conventional cancer treatment option. Would I have undergone chemotherapy and/or radiation? It depends. Those can be highly effective, but it depends on the patient’s situation.

Anyway, I digress. I wish you all a Happy New Year, even though it’s a little early at this point. I hope you’re all doing okay and in good spirits. Keep up the fight against cancer!

Breast Cancer, Kindey Cancer...all is good for now.

Wed, 24 Nov 2010 19:17:49 +0100

Wow, I can’t believe that it has been that long since I posted here. This is when kidney cancer becomes part of your life, but it is not the dominating part anymore. And in my case, it actually never was, because my wife’s breast cancer always concerns me much more that my own health situation.

Anyway, it’s time for an update. Okay, back in early September I told you about the report that we received from Hackensack University and how scared we were after the MRI. A couple of days later we got a call from our regular Oncologist. Ann was at work so I picked up the phone and I was so scared. He told me he wanted to speak to Ann and I thought “Oh, please God, no”. I told him she was at work and then I asked him what he made of the report. He was surprised that we had actually received the MRI report prior to him. But then he said:” I don’t believe this is anything.” This confirmed our assumption but it was good to hear it from an Oncologist.

All the “suspicious masses” that were found all of a sudden on that new MRI, had been detected before by the countless MRIs and Ultrasounds Ann had done since she got diagnosed with her cancer. Sloan Kettering had actually biopsied some of them and they all came back okay.

A little later we also got confirmation from another doctor who usually does Ann’s MRI and she also confirmed that everything is okay.

I am not in the position to criticize. But some Cancer-Institutions – and this is just my personal opinion – try to scare the hell out of you. When they learned that Ann opted out of chemo because it would have given only 2% chance of an anticipated benefit considering the characteristic of her breast cancer, they immediately rang the alarm bell.

Mastectomy, chemotherapy, etc. all that was suggested aggressively and in my mind, it was just to make money off of us. Don’t get me wrong, chemotherapy – as much as I dislike it in general – can be a very valid option and sometimes it’s the only option you have. The same is true for radiation and/or drastic surgeries such as a mastectomy. However, I believe that some doctors are a little too eager in pursuing these methods while other valid options are only the table.
Anyway, a few weeks later Ann and I went to the city to see Dr. Bard in NYC.

He is one of the leaders in radiologic imaging and the Doppler Ultrasound technique/method. It was very very expensive, but in my opinion absolutely worth every penny. The Doppler Ultrasound is a 3-D deep imaging tool. I will not even try attempting to explain how it works, because I don’t know enough about this technology. However, with this tool any area in the body can be scanned for active cancers by searching for blood circulation activity. In other words, the tool DOES NOT pick up on any DCIS masses (ductal carcinoma in situ, in unsophisticated terms: pre-cancer), but will detected anything else that is active. Dr. Bard did a very thorough examination. I was in the room and I was sweating bullets. If you see anything “red” on the screen, then you know something is going. After about 20 minutes, Dr. Bard dismissed us with a short: “Excellent – everything is okay”.

So, now let’s talk about my kidney cancer. And what can I tell you – I had a CAT Scan done last month and everything is clear. That’s it. There is nothing else to say. So for now I‘m good. I guess I will have another round of scans done in 12 months.
I am always scared about Ann’s cancer coming back. Our Oncologist keeps telling us not to worry and everything is fine. And we moved on with our lives, but there is always this black shadow, sometimes bigger and sometimes smaller, but it never goes away. But all we can do is continue what we’ve been doing: living a healthy lifestyle because we do believe that this plays a paramount role in cancer prevention.

Alright, I hope you guys are well. I feel bad that I haven’t followed-up with you for a long time. I’ve been busy working on an Internet project and I hope it will see the fruit of my labour in a few months. After all, kidney cancer and breast cancer left us with a huge bill and I need to find ways to get rid of that.
Have a wonderful Thanksgiving.

Tony

Another Scare

Mon, 06 Sep 2010 14:22:53 +0100

My wife's follow-up test all came back okay every since she had her second re-excision done in order to remove her breast cancer tumor. She recently had an MRI done at a different hospital and they called her two days later, asking whether she's aware of a second clip in her breast. During the first surgery, the doctors put a clip in her breast. And we vaguely remember that they put in a second one during one of the re-excision. Because on the new MRI, there is a second one showing up. We asked whether they are sure if this is indeed a clip and not something else they see. They ensured us that it looks like a clip, but they cannot find any mention of it in any of the surgical reports.
On Thursday we picked up the report. Is says that they found suspicious things and then they clarified their findings. One of which is a NEW 1.2cm mass closely located to the initial tumor site. And a few other NEW smaller masses.
The first time I read the report, my heart stood still. After reading it a few more times, we felt a little bit better. First of all, that new mass is exactly in a spot where another benign lump was found when my wife had her biopsy done. It's in the exact same location with the same size. All the other smaller masses have been seen on previous reports, so we have no idea why they refer to them as NEW.
The “new” 1.2 mass – so it says in the report – could be that second ominous clip.
It would be very surprising if between her latest test, which was a couple of month ago, and now, a brand NEW 1.2cm would have developed all of a sudden.
Anyway, because of the long weekend we weren't able to speak to anybody. Hopefully tomorrow we will find out more.

Kidney Cancer Blues

Fri, 26 Nov 2010 00:19:30 +0100

I just went back to New York Presbyterian a couple of weeks ago for my 6 months kidney cancer follow up. They drew some blood and a urine sample. And I was sent for a chest X-Ray. All that is already over 3 weeks ago and since I haven't heard anything back from anybody, I assume that nothing suspicious was found in either test, otherwise somebody would have called me - I guess.....

My wife's latest Ultrasound and Mammogram came back okay, too. Today is actually her "first year cancer-free" anniversary. A year ago her doctor told us that there was no more evidence of her breast cancer.

Other than that, life is back to normal with all the hassle and stress. On the other hand, nothing is "really normal" anymore. Our cancer is always present in way way or the other. We continue to maintain our healthy lifestyle. I can't believe that I used to stay up late every day. Now I NEED to got to bed by 9:45pm at the latest. But I also get up early and I like this new schedule.

I hope this message finds all of you in good health.

Take care.....

Tony

Kidney Cancer Void

Thu, 29 Apr 2010 01:36:54 +0100

Hi everybody:

I hope everybody has been doing fine. I completely forgot about my cancer. Well, not really. The truth of the matter is, there’s not a day going by where I don’t think about either my renal cell carcinoma or my wife’s breast cancer. And that sucks big time. I don’t know if it’s the fear of recurrence, or just that lingering notion of “hey, that could have been the end.” And there are the constant reminders that make sure that there is no possible way to put the whole thing behind you for a while – I’m talking about the freakin’ bills that still keep pouring in for some reason. You’d think that someone with a reasonable health insurance shouldn’t get hammered with too many of those, but I can assure you that this is not case. If you chose to make cancer your hobby, you’d better open your wallet all the way…J

I am scheduled on June 10th for a follow up exam, including the whole program (Cat Scan, X-Ray, etc.) My wife just had an Ultrasound and MRI done, both of which came back okay.

Other than that, we are still going back and forth with our bank. I did a ballsy thing in contacting the CEO of our mortgage company, explaining the ridiculousness of what was going on and it actually worked – the next day we were assigned with a designated person from their executive office, which since made our interactions with them much more reasonable and efficient.

Other than that, I’m feeling okay. Sometimes I get kind of weird pains. Actually, you can hardly call it pains, much more flashes of temporary discomfort. Little pinches on both sides underneath my chest.

I am still on my new schedule and I do like it. Going to bed early and get up early in the morning. I’m also trying to maintain a reasonably healthy lifestyle and get my workouts in on a regular basis.

Lastly, I am really happy that Kristy decided to get into the blogging saddle again. Welcome back, Kristy. And make sure that you visit her new blogging platform at

Fat, Sassy and Metastatic.

Okay, I hope you’re all doing well and I will talk to your later….

Tony

Five months after my RCC diagnosis

Mon, 22 Mar 2010 15:12:40 +0100

I can’t believe it has been five months already since I received my RCC diagnosis. Recently, I got a few emails from readers of my blog and I am grateful and appreciative of their kind comments. They told me that it helped them in their own cancer journeys and that was, after all, my primary goal in writing and sharing about my own experience as a kidney cancer patient.

Health-wise, things are going fine. It’s remarkable how the body is capable of adjusting to a new situation in such short amount of time. Everything is back to normal.

Other than that, cancer left us with a huge bill and as a matter of fact, we still keep getting invoices from all over the place, for pathology, anesthesia, doctors. And that’s with a relatively good insurance! Well, things are getting very tight now and we are fighting for a home loan modification. I try to deal with the situation but emotionally, it kills me. The thought of an impending foreclosure is not good for a person who is known to be a worrier to begin with. But we shall see, the fight is not over yet.

The rest of the family is doing fine. Ann will have another full check up in a couple of months. We are all desperate for some sunshine after the recent snow and floods. Fortunately, we had no damages done to our property, unlike so many other families in our area.

I hope everybody is well out there. Yes, I feel guilty. I should blog more often and I should check your blogs more frequently, too. Darn.

Did I say that I feel guilty….;-)

Stay healthy.

Back to 'Normal'

Wed, 10 Feb 2010 11:53:03 +0100

Life has me back. What a strange year it was, 2009. But I am back at work since January 1st and busier than ever. Health-wise I'm doing okay, nothing to complain about. I fully gained my normal strength back and my fitness level seems to go up slowly but continuously. Sometimes it feels a little strange inside my abdomen, right where my left kidney was taken out and also on the other side, were the remaining kidney now has to work twice as hard.

But I'm trying to eat and drink healthy. No more crap that could be detrimental to my health. I drink tons of green Mocha Tea every day and plenty of water.

Ann had an MRI done last week. It was quite nerve wracking, because they had to do re-do the procedure over again. She was in there for quite a while. After that, both her and I were very nervous about the results. It has been eleven months now since she was diagnosed with breast cancer.

Two days later she called in to ask for the results. They won't tell her anything over the phone for confidentiality reasons, which I understand. But then they told her, that they were not even allowed to mail her the report directly, but only via her doctors. How stupid is that? Anyway, she asked if she could stop by in person to pick up a copy and that was okay. She drove down to Carlstadt, NJ......and then she called as she was sitting in the car reading the report. She was in tears.

Everything is okay. Absolutely everything. What a relief. It would be foolish to declare victory prematurely, however, this was another huge milestone that was achieved.

I hope you are all doing well and had a great start in 2010.

Talk to you soon.

Tony.

Sorry

Mon, 25 Jan 2010 14:43:01 +0100

Hi everybody:

I apologize for not having put up any posts here over the past few weeks. The fact of the matter is, my work-life got me back again. And once you’re back into the daily routine there is not much time left for other things. In addition to that, I’ve been working on another Internet project and I might talk a little bit about that later.

My cancer recovery is going very well. Absolutely no pain even during or after heavy workouts. There’s little bit of a pinch every now an then, but that’s it. I do get very tired at times, though, I mean tired beyond that typical afternoon-food coma we all know. But that’s nothing of real concern. I also noticed that my schedule has shifted. I typically go to bed around 9:30pm now and get up at 5:30am the next morning. And I like that a lot.

Other than that: there’s not much to tell you. I get very concerned about my wife’s health condition, even though there is absolutely no indication of new cancer recurrences. It’s in my mind, I get carried away at times and I end up at very dark places. But I guess that’s perfectly normal and as long as I can pull myself out of there, everything is under control.

Alright, that’s it. I do hope all of you are doing okay and had a good start into 2010. Again, I’m sorry for not having posted anything here for a while.

I wish you good health!

Tony

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Happy New Year

Sat, 02 Jan 2010 12:09:39 +0100

I wish everybody a Happy and Healthy New Year 2010.

I guess I’m not much of a party person. I went to bed before 9:00pm last night and had a good night sleep. Fortunately, there wasn’t too much firework activity going on, on our block.

The recovery process is still going well. Last Monday though, I had to get back to New York Presbyterian because one of my incisions started to discharge a yellowish substances and it started to burn. There is a relatively deep wound now and it looks kind of creepy. The whole head of a Q-Tipp fits in there. It doesn’t really hurt, it is just uncomfortable and I know that something like that could potentially turn into something more serious. So as I said, the doctors checked it out and concluded that I need some antibiotics and just to keep a close eye on the situation. I need to clean it once or twice a day and then cover it up with a piece of gauze. By the way, it’s not advisable to see a doctor between Christmas and New Year. We had to wait for 2.5 hours. And I don’t blame anybody, that’s just the way it is.

But other than that I’m okay. I still stay away from any strenuous activities and I avoid lifting items that are too heavy. My physical fitness is a catastrophe, I get tired from just walking around a little bit. But that’s okay, next week I will go back to work and after another couple of weeks I will probably start working out again (Witek, get the table and the paddles ready!).

I would like to take this opportunity to thank everybody here from the bottom of my heart for their support and advice. This blog doesn’t have many readers, but those who read it, have given me a great deal of support and help over the past few months and I am truly greatful for that. Yesterday, I received an email from someone who just found out about a 5 cm tumor in one of his kidneys. He told me that my blog helped him to understand what he has to expect during his upcoming cancer journey. I mean, what else can you ask for? This is exactly why I started writing about my wife’s and my cancers. I had the hope that someone in my situation would benefit from my experience. Apparently, it worked.

Some called me “brave” to share publicly my ups and downs. Others were worried over the fact that I had put some photos up on this blog. First of all, I’m the exact opposite of a brave person. What I am, though, is straight forward honest. That can be very tricky or even foolish at times. I might have deprived myself of many good opportunities, I don’t know. But anyway, this is the way I decided to handle my situation. Some people may like it, others may despise it. And that’s okay. In a few months or years down the road, I might look back and retrospectively conclude that it was a mistake. But even then, I will - as always - have Jack Nicholson’s line from in “One flew over the Cuckoo's nest” in the back of my mind, when he said, after failing to lift a bathroom sink and throwing it through the window, in an attempt to escape a mental institution:

“Well at least I tried, didn’t I? At least I tried.”

Take care!

Comments

Life after surgery

Mon, 14 Dec 2009 12:24:10 +0100

I am happy to report that the recovery process is going remarkably well. There are obviously a few things I can’t do, like stretching, jogging, lifting heavy things, but I can walk and move around normally. What amazes me the most, though; there aren’t any dietary restriction and the fact that I don’t feel any difference living with one kidney only. I thought that there would have been a short period of adjustment until the remaining kidney fully takes over for the missing one. But no, there is absolutely no noticeable difference. Except for avoiding eating foods in excess that are high in potassium, such as bananas and things that cause high levels of uric acids (red meats), I was told that I can eat whatever I want. Well, I personally have a slightly different take on that. First of all, I don’t eat meat at all. I was never a big meat eater to begin with and started completely staying away from any kind of meat shortly after my wife was diagnosed with breast cancer. I also don’t eat any sweets, I never had a sweet tooth, so that’s no real sacrifice for me. And as for the alcohol, I stopped drinking completely as of February of this year. The uric acid levels in my body where alarmingly high. Not only that, but I had gout attacks. Anybody who ever had to experience a gout attack knows what I’m talking about. The pain is excruciating and so far only the stent that was inserted into my body after the Cystoscopy, has topped that pain-wise. So I had the choice – staying off of anything that produces high levels of uric acid or to continue suffering from gout attacks. Apparently, this was a no brainer. Instead I joined my wife in living as healthy as possible. Very little processed food only, a lot of green and leafy stuff, green vegetable smoothies with some fruit, veggie juices made of locally grown organic produce, grains like millet, amaranth, brown rice pasta, etc. I still do eat ridiculous big amounts of food and I probably will for the rest of my life. Nonetheless, since we only eat good quality stuff with a low glycemic index, I lost a good amount of weight and I am now in the ‘ideal range’ again. Well, I guess the point is: I feel good and the only thing I miss at this point is to work out again. That, though, is not possible, yet, because it would be certainly detrimental to my recovery process.
But other than that, I’m doing great.

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