Support Kevin Battling His Stage 4 Gastroesophageal Cancer

[taken from the previous GoFundMe page, created by an Alvernia coworker, which appears to have been accidentally deleted -- edited]

Hi, this is a fundraiser on behalf of Kevin Kauffman, former Public Safety Officer at Alvernia University. Kevin has been employed and serving Alvernia wonderfully as our 3rd shift Supervisor for 9 years since 2015! In addition to his great work with Alvernia, Kevin is also not only a founder of “Atrial Fibrillation Information Exchange” (a FB group) since 2012; which now has 17 thousand members and counting, he also practices as a Board Certified Patient Advocate and is the author of “A Life on Hold: Crossing Paths with Atrial Fibrillation”.

Unfortunately, however, Kevin has been stricken with Stage 4 Gastroesophageal Cancer, and his treatment has restricted him from working. So, for the first time in those 9 years Kevin has not been able to provide services for the campus and students he loves.

The problems began back in 2006 as this was before Kevin had health insurance. At the time he was having heart problems which required many ER visits, trials of many different medications, and two major surgeries. During this period he was also suffered from a minor stroke. This then forced his hand in liquidating his 401k and all other savings and investments to cover medical bills.

Sadly, after getting back on his feet financially, Kevin now has this new health issue and accompanying financial burdens. Currently with all his doctor visits, treatments, and side effects, he is barely able to work a fraction of his regular full-time hours and consequently has no income to pay any of his regular monthly expenses. Sadly, the gastroesophageal cancer was worse than originally thought, having spread to other organs and throughout much of his body, and the only chance Kevin had was the most aggressive treatment possible, thus worsening his chances of working. Currently for Kevin, his home is his biggest financial concern. On top of this, Kevin also has another very large concern -- his 91-year-old mother. Kevin unfortunately, is no longer able to help his brother take care of their mother as much as he used to. It is sadly just the both of them and there are times when he or his brother is busy or needs help, and Kevin just cannot help like he would like to at the moment.

To not make this message much longer, a message from Kevin: “I know it is going to knock me out of the game for a while, possibly turning me into a 'zombie' who needs help just getting out of a chair. I sure am NOT looking forward to that, but I am keeping my eyes on the prize past that. If that's what it takes to get there, so be it. I appreciate everyone who is with me on that decision and understands that I might just disappear from time to time while. i try to recuperate”

Again, on Kevin’s behalf we would like to thank all who offer a helping hand, and we simply ask everyone to keep Kevin in their thoughts and prayers. Thank you.

UPDATES

March 16th, 2024

Hello all! I'd just like to thank everyone for their overwhelming support! I am truly shocked and without words and certainly don't feel deserving. But it is much appreciated and needed right now, and although I am used to being the one who helps, I do need help and am learning to accept it. It really blows me away though that in just four days we've raised almost enough to cover two months of my fixed living expenses. Wow, that will be a huge help moving forward. Thank you all!

As for me, the last of my 15 radiation treatments was on Tuesday. My swallowing has improved significantly, but my stomach is very irritated. So I still can barely eat or drink. I am about 60 pounds under my "normal" weight right now... almost holding steady, maybe dropping ever so slowly. The goal is for my stomach to heal before the chemo side effects kick in so I can put on a little more weight in prep for the chemo. My chemo has been on hold for a few weeks due to low white blood cell count. Hopefully we can start that back up this coming week. Once we do, the side effects are expected to ramp up over about 6 weeks. That's when the real battle will begin, and I will need all the strength that everyone sends my way. So your continued support and encouragement will be welcomed and greatly appreciated! I will send more updates here as things progress. Thanks again to all of you for everything!

March 30th, 2024

Slow but steady stomach improvement has enabled me to start eating more normally just a couple of days ago. Still limited to small quantities, but I can get a wide range of foods down now as long as I remember to chew, chew, chew. Good timing, because we just restarted chemo... next treatment in four days. We'll also be doing a second tumor marker (CEA) test at that time -- looking for it to be lower than the baseline test I had at the beginning of treatment. That will mean that tumor growth has slowed, which obviously is the goal. As for your generous donations... they have gotten me through March, and the remainder should cover most of April's expenses. I hope to get a few more hours of work in this month, too, before the serious chemo side effects kick in. My treatment schedule is open-ended, though -- it will be ongoing until there is nothing left to treat, so please keep sharing with your friends. If only for prayers, thoughts, vibes, etc... any and all support is greatly appreciated!

April 13th, 2024

A couple months into treatment and my eating has improved significantly. Weight's come up some and been stable but still about 50 pounds below my "normal" weight. Second tumor marker blood test was 5.7 compared to 14.3 baseline taken before the beginning of treatment. AST and ALT liver enzymes are now normal for the first time, also. All good news. A CT in a few weeks will show how much spreading there has been since the beginning of treatment, which will establish a baseline for rate of spread. Future CTs will keep an eye on that. On a negative note, I have developed a DVT due to the coagulating effect that chemo can have on the blood. Hopefully a 30-day oral med treatment takes care of that. Thanks again to everyone for your more than generous donations! Unfortunately the interest in this fundraiser has stalled, but the funds raised have gotten me through last month and this month. And I could not appreciate that more! You all know that I am not one to beg or even ask for help, but this is no time for pride to take over -- if you have time to share my story and this link with your friends, please do. Every little bit will help! I have taken a leave of absence from work for the time being, so I am also pursuing state and federal aid. I will keep you posted on how that goes. Thanks again!

May 6th, 2024

I posted this update a few days ago on FB, but for those not on FB I thought I should repost it here.

I just got a sneak peek at the radiologist's report from my CT this afternoon.

One bad thing... I have a small volume PE in the lower right lobe. That's probably from the DVT in my leg. I'm already on Xarelto, so we just wait for that to dissolve.

Distal esophageal wall thickening, but no more tumor. ZERO evidence of pulmonary metastatic disease... no cancer in the lungs! I had three tumors in my lungs on the first CT.

Mildly improved hepatic metastatic disease... that's less cancer in the liver. Mild is better than none at all. This is going to be the toughest one to fight. And the most important. Decreased size of lymph nodes around the liver and stomach. No new findings of metastases in the abdomen or pelvis. So the cancer is not spreading.

Overall very good news!

P.S. I did have a doc appt the next day, and she came in smiling for the first time and agreed it was all good news, everything moving in the right direction. She did show me my CT, though, and said that the four ping pong ball sized tumors (and many much smaller tumors) were still a major concern, and if I had come in with only that they would be just as concerned as they were with my actual diagnosis. She showed me evidence that the chemo is working, although I could barely discern it myself. It's going to be a very slow and drawn out process to eradicate them altogether. Many months. I will try to keep everyone updated.

Thanks to everyone for your continued support!

May 28th, 2024

It's been nearly three weeks since my last update, so I guess it is time. Things are pretty much the same. The four golf ball size tumors in my liver are pretty much all that is left and are the primary concern from here on out. It's a good sign that my liver enzymes have returned to normal, I don't nor did I ever have any pain in these areas, there are no appreciable lumps, and I am not jaundiced. Still, these are very tough and very slow to respond to chemo. My doc says to expect "many more months of treatment". Chemo has been going OK for me, but I definitely see the side effects getting marginally worse and taking slightly longer to resolve each time. Right now I get chemo Wed through Fri every other week, and feel lousy until Monday or Tuesday. But that leaves me with a whole 8 or 9 days of feeling decent before my next infusion. I can live with that if it is going to get me the desired result. My next CT isn't until the end of July, so I won't know until then how much further progress has been made. Honestly, my biggest concern right now is financial... and I ain't to proud to beg! Please pass this GoFundMe page on to anyone who may not have seen it. I have been declared temporarily disabled and have been approved for both SSI and SSDI. SSI starts right away and lasts for 6 months but is a pittance. SSDI is more, but still over $1,000 short of covering my fixed monthly expenses. And worse yet, it doesn't kick in until the end of September. So between now and then, bills are not getting paid without more support from generous donors like yourselves, to whom I will forever be indebted if I actually do survive this. So again, if you could share via social media, email, word of mouth... however, I would GREATLY appreciate it to the degree that my words cannot express. The money raised so far got me through March, April, and part of May. It's been a huge help, and I couldn't be more thankful during this extremely difficult period in my life.

June 21st, 2024

Just a quick financial update because after all, that's what this page is about. After many phone calls and form and document submissions over the last two months, I have been found to be "permanently disabled" by the SSA. That is because the type of cancer that I have or the way that it was spread is deemed to be "incurable", which classifies my treatment as "ongoing", or in other words continuing for the rest of my life. That's not to say it cannot be beaten, and my chemo doctor said if anyone can beat it, it would be someone like me.

So what this all means is that I qualified for the maximum SSDI benefit after the obligatory 5 month waiting period after date of filing. Plus one month delayed payment period. Not retroactive. So that will start coming in the end of September. This is great, and I am very thankful for it, but it is still thousands less than I was bringing in before and quite short of being able to cover all my fixed monthly expenses. SSI fills in for that 5 month delay, but it is like one third of SSDI. It is retroactive, though... at the end of its term. So for two months I will be receiving both.

After this declaration by the SSA, the state coughed up $22.10 per month in aid. They might as well keep it. But they also got me great zero deductible, zero copay and zero co-insurance coverage from UPMC for free... a lot better than the almost $1,300 I'd have to pay without assistance. And then like the domino effect, the state's action trickled down to the hospital, and their Patient Financial Assistance program upped my coverage from 90% to 100%, so that wiped out a couple thousand dollars in outstanding co-pays and co-insurance.

Thanks to all of you, I have managed to pay on my home loans and my bankruptcy from my last health crisis up until May. I've been working with Wells Fargo on the loans, and they do offer a 3-month forbearance in times of hardship -- of course it is lots of paperwork and jumping through hoops. And it's only three months. Who knows how long that will take, but for the time being, those loans are not being paid. Surprisingly the bankruptcy was easy... my attorney said just stop paying and when somebody notices they will contact me and adjust the plan. Ultimately, though, i am pretty sure I will have to sell my house. Even in its relatively run down condition, that will pay off ALL my debts and leave me with over $100k in my pocket -- definitely enough to finally get my patient advocacy practice off the ground.

But anyway... I've always known that aid was available but I never knew how good it was or how relatively easy it would be to get. Had I known 17 years ago when I was struggling through my first health crisis, I wouldn't have already been in dire straits coming in to this one. But I just want to say how very thankful I am to everyone who has donated or who will donate to this fundraiser. It helped me get through the first two and a half moths when I had no clue where to turn for aid and was swept up in a whirlwind of doctor appointments and testing. I will never be able to make it up to any of you, but believe me I will try my best once this is over.

Healthwise, I don't have much of an update. Platelets went low so I had to skip another week. One of my chemo drugs dosages was lowered slightly which helped with that and reduced some of the nasty side effects. I will have a CT in less than 4 weeks, and I will know a lot more then about the liver tumors. I'll give another update at that time. Thanks again, everyone!

July 24th, 2024

Wow, it's been a month... time for an update! And what better time than right after my latest CT scan??? Had the CT very late Monday and received the written results yesterday, but I wanted to get a look at the scans myself and discuss them with my doctor first before posting anything.

So, first, the good news. Continued improvement to the esophagus and liver tumors. Yay! If you remember, the esophageal tumor was eradicated by my initial radiation therapy, but some thickening of the wall remained. CTs are not great for identifying what you are seeing on the image, so that could have been inflammation or scarring. It is decreasing, whatever it is, so probably still residual inflammation.

The liver tumors... really the only thing any of us cares about anymore, and the main reason I continue my chemo treatments. I have mentioned several times that there are four (4) large tumors in my liver, about golf ball size. Actually there were four large and one small tumor, which I only found out today. Well, the small one is no longer visible on the CT, so it may be gone! The other four are now, surprisingly (even to my doctor), visibly smaller! Maybe like ping pong ball size. But overlaying the initial scan from February with this week's, there is significant shrinkage. Woohoo! We are all very happy about that, as it is happening much more quickly than either of us expected, and it is a good reason to keep going with treatment as is regardless of some slightly worsening side effects.

That's the good news, and it FAR outweighs the bad. But there were some new negative discoveries on the CT. Lungs... there are two TINY nodules, less than half a cm, that weren't there before. These got little more than a shoulder shrug from my doctor, saying it was impossible to say what they were, but they are not in the areas of the tumors that I had in my lungs, so unlikely the return of any cancer. Possibly scarring from the immunotherapy I am on. It could disappear by next CT.

Also in the lungs, airspace disease in the left lung. That's a precursor to pneumonia, but not a huge concern... just something to keep an eye on. Also maybe related to immunotherapy or could be a silent infection. Watch, wait, and see.

Possible start of gallstones -- not related to the cancer or chemo at all. Just a birthday present, I guess! Ha ha! I have never had gallbladder issues so it seems weird it would pop up out of nowhere. But it could just be inflammation that goes away by next CT. Time will tell.

Last thing, colitis. Probably acute and probably an immunotherapy side effect. No related symptoms so we just keep it in mind and react if anything changes. It also might go away by next CT.

Oh, one more good thing -- the pulmonary embolism in my right lung appears to have resolved. Great! Now if only the DVT in my right leg would do the same. It's coming up on 4 months I think... any day now. HAHA! Actually could be a few more months. Just hoping to avoid surgery for that.

So I think that is everything. Doctor is very happy, and so am I. We're going to stay on track with the original treatment plan for as long as possible since it seems to be working so well. I can continue to put up with 4-5 really bad days as long as it gets me 9-10 good days every two weeks and is showing visible, measurable improvements from month to month. Onward and upward!

Financially, same boat as last update. Not much money coming in until the end of September. So I could still use your help reposting and sharing this GoFundMe page if you have a minute to do so. Every little bit helps right now. I can't say thanks enough to all of you! THANK YOU!

July 31st, 2024

A minor update for those who may be interested: Today marked the end of my sixth cycle of chemo -- a cycle being two two-week infusion periods. Normally that would be 24 weeks, but I had three weeks where I had to hold treatment due to abnormal blood work results. So that makes it 27 weeks for me. Hard to believe! But anyway, since it's been so long, my doctor felt it was OK to hold off on one of my chemo drugs this infusion period -- mainly due to the lung issues it is now causing: new nodules and the air space disease. We will see if discontinuing this drug will improve these conditions as well as possibly reverse my low and steadily decreasing red blood cell count and hemoglobin level. If these last two don't come up, I will need a blood transfusion at my next scheduled visit in two weeks, so... fingers crossed.

Besides all that, the "normal" side effects that I have been experiencing after my infusions -- headache, dizziness, nausea, vomiting, high fever, severe shivering, cold sensitivity, and increased peripheral neuropathy -- have NOT presented yet today, and it's now several hours past where they normally would have, like clockwork. So I think all these side effects may have been caused by this same drug that was held today. And I believe this was a secondary reason that my doctor decided to take this step. She's on board with aggressive treatment but also very focused on quality of life.

Now don't get me wrong. It would be great NOT to have 4-5 really bad days every two weeks. But the treatments have been working so well that I am willing to make that sacrifice and just deal with it if necessary. I definitely do not want to compromise the effectiveness of my therapy simply for personal comfort. So I will need to have a talk with my doctor. If it also leads to improvement of my lungs and/or blood count without reducing the effectiveness of my treatments too much, then it might be a worthwhile trade-off, as those two things are the main driving factors behind the severe fatigue and exhaustion that I have been experiencing. As with all things, time will tell what's best. Still, these decisions are never easy to make.

More in the next update!

August 15th, 2024

Six-month (minor) update. Yes, it's been six months since this all started... hard to believe! There have been ups and downs, but overall generally positive. My latest treatment, though, had to be put on hold due to the effects the one chemo drug has had on my lungs, thyroid, and blood counts. This is the same drug that was lowered in dosage just a few weeks ago. But now it is on hold indefinitely. The upside of this, besides allowing time to heal from the damage it has caused, is that this drug was almost solely responsible for the uncomfortable side effects I was experiencing after each treatment. The downside is that it may compromise the effectiveness of my treatments moving forward. I am willing to put up with discomfort now to achieve the ultimate positive outcome down the road, but maintaining the most aggressive treatment possible doesn't make sense if the treatment is going to kill me first! Besides, we've held treatment for a total of three nonconsecutive weeks before the last CT, and things still progressed in a positive direction, so I am OK with the path we are taking for now. I guess I have to be... I have no choice! :) We may bring this discontinued drug back into the mix later on down the road and slowly ramp it back up to see how I tolerate it. So for now I will enjoy the freedom from debilitating side effects and have faith that the remaining chemo drugs that I am on continue to be equally as effective. Next update in a few weeks after my next CT -- I can't wait!

September 18, 2024

Two months since my last CT, so it's time for a major update. I'm going to call this one "Two Steps Forward, One Step Back". I was prepared from the start for this to be a rollercoaster, but this is the first time in seven months that it's going a bit downhill.

So let's start with the negatives: There is slight increased thickening of the lower part of the esophagus, which could mean regrowth of the main tumor that had previously been eradicated by radiation. Slight progression of the tumors in my liver. Small pleural effusions (pockets of fluid around the lungs) that were not present on the last scan.

Neutral results: Some fluid in both lungs but no worse than last scan. Start of gall stones, which was also shown on last scan. No mention of the airspace disease in the lungs as identified by the last scan, but I assume it is still present and is what is causing the pleural effusions.

On the positive side: Improvement in the lung nodules first seen on the last scan. They are tiny, we don't really know what they are, but at least they are going away. Also, the thickening of the colonic wall discovered on the last scan is improving.

So, overall... slightly negative. Kind of expected -- I attribute it to some major changes in my regimen over the last two months. That being having to drop one of the chemo drugs due to dangerous side effects (lung, thyroid, blood, etc.), and then also missing five straight weeks of treatment due to low white cell and platelet counts. Taking breaks like that every now and then is good for the body but bad for the cancer... cancer doesn't take a break. I'm hopeful that things will start improving again if I can keep hitting it hard with aggressive treatments as scheduled over the next two months.

I will see my oncologist in one week and will post another update if she has anything to add to this. Honestly, I am more worried about the continuing "financial toxicity" (a term I just heard in a cancer survivor webinar yesterday) of my condition than I am about the condition itself. So if you haven't done so yet, please consider sharing the link to this fundraiser with anyone we know who may wish to contribute. Thanks again to everyone for all your support!