My Wife's Health Story- Heather Kohler
Donation protected
July 28, 2019
The Journey of Heather Kohler- 46-year-old soldier for 19 years, mother of 3, new wife
Heather’s health saga began about 2 years ago when something sinister started growing inside of her without us knowing. She gained weight and her food choices started changing but we chalked that up to a slowing metabolism and the hormonal changes that typically occur in your 40s. Then in 2018 we began a workout program at home monitored by a trainer. Heather noticed a hard knot in her stomach while doing Superman exercises. We assumed it was a fibroid growing on her uterus and finally got checked out in early 2019. Her family physician took one look at her stomach outwardly and said “Yeah, your stomach isn’t supposed to look like that”. After x-rays, MRI testing, and an OB/GYN visit, it was determined that she did indeed have an extremely large fibroid on the front and side of her uterus. The OB told her she looked like someone who was 3 months pregnant. A biopsy was performed, and this indicated that the fibroid was benign. Surgery was scheduled and due to the large size, the OB confirmed that a hysterectomy would need to be conducted but only a partial as she did not see any need to remove ovaries and throw Heather into early menopause at her age. Finally, in February, Heather went into surgery for this procedure. It turned out that when the OB opened her up, she knew at once that she was NOT seeing a benign fibroid, but rather a cancerous tumor. And the tumor was NOT on her uterus but was coming from her left ovary and had merely gotten so big it had grown across her uterus. The hysterectomy went ahead as scheduled and her left ovary was removed, and the tumor was sent out to confirm the cancer.
Heather received the confirming call in early March that this was indeed cancer. But there was a complicating factor- the pathology marked the tumor as a primary GI cancer, not an ovarian cancer; meaning that this tumor had metastasized from her GI area somewhere, which also meant she was already in an advanced stage. Thus, more testing began over the next few weeks in March and she faced many more doctors’ appointments. Heather had every GI test imaginable and was referred to a local cancer specialist, who referred her to Penn. The GI tests turned up nothing. Penn had already done the second opinion pathology testing of the tumor that had confirmed the primary GI pathology. The Penn OB Cancer specialist doctor believed he was looking at a secondary ovarian case and that this was primarily a GI issue. He also recommended that she should see a GI Cancer specialist. But as a confirmation, he agreed to put her case up against the upcoming tumor review board at Penn and get back to us. Indeed, this case review board confirmed his opinion that this was a GI case.
We circled back to our local cancer doc, and we all agreed to a third opinion from Fox Chase. We also would send the tumor to Fox Chase for yet a third opinion on the pathology as well. The specialist appointment at Fox Chase was in April. She was of the opinion that regardless of the pathology, it was time to treat Heather and get her body “mopped up” of any leftover cancer cells that may have been left roaming around from her surgery. This doctor determined that Heather could be dealing with a rare subset of another rare subset of ovarian cancer that sometimes has pathology markers that mimic GI cancer. The actual chemo treatment is the same for this rare ovarian cancer as is used for GI cases. It is called the Folfox regimen. After all of this, we agreed to circle back to our local cancer specialist with this new info and begin treatment. A few weeks later, we got the pathology report back from Fox Chase confirming for a third time, that this was a primary GI case.
Our local cancer specialist agreed with the Fox Chase doctor that this could most likely be the rare ovarian subset cancer and scheduled her to begin treatment. She admitted we may never know for sure which type of cancer Heather truly had or has unless she indeed begins to grow something in her GI tract. If her diagnosis is the rare ovarian cancer, then Heather is a stage 1. If this is the primary GI, then she is a stage 4.
So, May 6, 2019 Heather had her first chemo treatment at our local cancer office. She was scheduled to undergo 12 total treatments, one treatment every 2 weeks, which would carry us from May through October. She would have a chemo treatment on the Monday of each chemo week and leave that afternoon with a pump that would continue to pump more into her over the next 2 days. She would go back each Wednesday of that chemo week to get the pump removed and also get a Neulasta injection to help protect her platelet counts. Unfortunately, Heather is VERY sensitive to the chemo side effects and has had a horrible time with these treatments.
Our plan was for her to continue working through treatments.
Heather works for the PA Air National Guard, where she has proudly served as a technician in the logistics unit for 19 years and was recently promoted to Master Sergeant. She was set to deploy this fall with her unit. With her newly promoted position, she had several technicians who look up to her as a mentor that were excited about deploying together under her guidance. We recently married in June of this year, DESPITE her diagnosis and scheduled treatments. Heather has a 14-year-old son, and I have a 10-year-old special needs daughter and a 14-year-old son as well. That means we are a blended family with active kids that require a lot of running around, activities, and sports. We had a honeymoon booked to Mexico the week after the wedding.
A few of our plans had to change once we saw how sensitive she is to the treatments and how very sick they make her. She has the typical nausea along with some vomiting, has neuropathy (tingling and sensitivity) of her fingertips and toes, neuropathy in her jaw when she bites into anything or takes a drink, the feeling of swallowing a pebble when she drinks anything, muscle tension and “curling” of her forearm muscles and calves which makes it difficult to walk, light sensitivity, migraine headaches, and practically dead taste buds. And of course, EXTREME fatigue. Thus, Heather hasn’t been able to work easily since the treatments began. She did not have enough leave time to be able to miss days at work with pay, so she essentially has not received pay from work since May. We luckily bought trip insurance for our honeymoon and cancelled the trip. We took a “mini moon” to Rehoboth Beach a few days after the wedding. We plan to attempt the Mexico trip later in the winter after treatments have ceased.
This brings us to the point of reaching out now to all of you for help. It has taken a long time to get to this point where we have to admit that we need help, as our pride and egos have not allowed us to reach out this way until we virtually hit our knees with the realization that we don’t know how long we can make it on 1 paycheck. We have been scraping by for the better part of almost 3 months, but with many more treatments to go and medical bills adding up, it is time to give in.
The honest fact is that it is not simply that Heather is missing a biweekly paycheck from her full-time job. But more so, that she is missing a deployment that was planned for a significant amount of income. She could make in that 6-month deployment what she normally makes in an entire year. We have taken steps already to reduce any excess expenses possible- we sold her Tacoma truck that was just bought a year ago. We are trying to cut out unnecessary items that we don’t need and trying to shrink the excessive grocery trips and such that we typically indulge in. We have the complicating factor of the wedding that occurred during all of this as well which puts us behind now too.
We have been very fortunate to have wonderful friends who have helped “heather sit” on her sick days so she is not alone while I can work. And still others who have taken her to appointments while I work. I have a very understanding work family that has allowed me the freedom to accompany Heather on many of her appointments or stay with her every now and then when she isn’t feeling well and just needs me. We have been fortunate enough to also receive some small grants from this wonderful organization “The Breathing Room” to help with a few of our medical bills and household bills. But at this point, there are more needs and expenses that we are barely scraping by and that is very hard to admit.
So, it is with all of this information and knowing that Heather is only halfway through her journey, that we have decided to share her saga and ask for help. We also appreciate prayers and emotional support as she continues her journey. We urge all of you to seek medical treatment anytime you feel that something isn’t right. You never know when that can save your life! We were told that most ovarian cancer patients aren’t diagnosed until it is too late as the symptoms are “silent” and mimic many normal bodily functions. We were lucky we sought help when we did, and that Heather’s symptoms were speaking loud enough that we were finally forced to listen!
We wish you all much love, happiness, and peace!
Stacie Kohler
Hatfield, PA
The Journey of Heather Kohler- 46-year-old soldier for 19 years, mother of 3, new wife
Heather’s health saga began about 2 years ago when something sinister started growing inside of her without us knowing. She gained weight and her food choices started changing but we chalked that up to a slowing metabolism and the hormonal changes that typically occur in your 40s. Then in 2018 we began a workout program at home monitored by a trainer. Heather noticed a hard knot in her stomach while doing Superman exercises. We assumed it was a fibroid growing on her uterus and finally got checked out in early 2019. Her family physician took one look at her stomach outwardly and said “Yeah, your stomach isn’t supposed to look like that”. After x-rays, MRI testing, and an OB/GYN visit, it was determined that she did indeed have an extremely large fibroid on the front and side of her uterus. The OB told her she looked like someone who was 3 months pregnant. A biopsy was performed, and this indicated that the fibroid was benign. Surgery was scheduled and due to the large size, the OB confirmed that a hysterectomy would need to be conducted but only a partial as she did not see any need to remove ovaries and throw Heather into early menopause at her age. Finally, in February, Heather went into surgery for this procedure. It turned out that when the OB opened her up, she knew at once that she was NOT seeing a benign fibroid, but rather a cancerous tumor. And the tumor was NOT on her uterus but was coming from her left ovary and had merely gotten so big it had grown across her uterus. The hysterectomy went ahead as scheduled and her left ovary was removed, and the tumor was sent out to confirm the cancer.
Heather received the confirming call in early March that this was indeed cancer. But there was a complicating factor- the pathology marked the tumor as a primary GI cancer, not an ovarian cancer; meaning that this tumor had metastasized from her GI area somewhere, which also meant she was already in an advanced stage. Thus, more testing began over the next few weeks in March and she faced many more doctors’ appointments. Heather had every GI test imaginable and was referred to a local cancer specialist, who referred her to Penn. The GI tests turned up nothing. Penn had already done the second opinion pathology testing of the tumor that had confirmed the primary GI pathology. The Penn OB Cancer specialist doctor believed he was looking at a secondary ovarian case and that this was primarily a GI issue. He also recommended that she should see a GI Cancer specialist. But as a confirmation, he agreed to put her case up against the upcoming tumor review board at Penn and get back to us. Indeed, this case review board confirmed his opinion that this was a GI case.
We circled back to our local cancer doc, and we all agreed to a third opinion from Fox Chase. We also would send the tumor to Fox Chase for yet a third opinion on the pathology as well. The specialist appointment at Fox Chase was in April. She was of the opinion that regardless of the pathology, it was time to treat Heather and get her body “mopped up” of any leftover cancer cells that may have been left roaming around from her surgery. This doctor determined that Heather could be dealing with a rare subset of another rare subset of ovarian cancer that sometimes has pathology markers that mimic GI cancer. The actual chemo treatment is the same for this rare ovarian cancer as is used for GI cases. It is called the Folfox regimen. After all of this, we agreed to circle back to our local cancer specialist with this new info and begin treatment. A few weeks later, we got the pathology report back from Fox Chase confirming for a third time, that this was a primary GI case.
Our local cancer specialist agreed with the Fox Chase doctor that this could most likely be the rare ovarian subset cancer and scheduled her to begin treatment. She admitted we may never know for sure which type of cancer Heather truly had or has unless she indeed begins to grow something in her GI tract. If her diagnosis is the rare ovarian cancer, then Heather is a stage 1. If this is the primary GI, then she is a stage 4.
So, May 6, 2019 Heather had her first chemo treatment at our local cancer office. She was scheduled to undergo 12 total treatments, one treatment every 2 weeks, which would carry us from May through October. She would have a chemo treatment on the Monday of each chemo week and leave that afternoon with a pump that would continue to pump more into her over the next 2 days. She would go back each Wednesday of that chemo week to get the pump removed and also get a Neulasta injection to help protect her platelet counts. Unfortunately, Heather is VERY sensitive to the chemo side effects and has had a horrible time with these treatments.
Our plan was for her to continue working through treatments.
Heather works for the PA Air National Guard, where she has proudly served as a technician in the logistics unit for 19 years and was recently promoted to Master Sergeant. She was set to deploy this fall with her unit. With her newly promoted position, she had several technicians who look up to her as a mentor that were excited about deploying together under her guidance. We recently married in June of this year, DESPITE her diagnosis and scheduled treatments. Heather has a 14-year-old son, and I have a 10-year-old special needs daughter and a 14-year-old son as well. That means we are a blended family with active kids that require a lot of running around, activities, and sports. We had a honeymoon booked to Mexico the week after the wedding.
A few of our plans had to change once we saw how sensitive she is to the treatments and how very sick they make her. She has the typical nausea along with some vomiting, has neuropathy (tingling and sensitivity) of her fingertips and toes, neuropathy in her jaw when she bites into anything or takes a drink, the feeling of swallowing a pebble when she drinks anything, muscle tension and “curling” of her forearm muscles and calves which makes it difficult to walk, light sensitivity, migraine headaches, and practically dead taste buds. And of course, EXTREME fatigue. Thus, Heather hasn’t been able to work easily since the treatments began. She did not have enough leave time to be able to miss days at work with pay, so she essentially has not received pay from work since May. We luckily bought trip insurance for our honeymoon and cancelled the trip. We took a “mini moon” to Rehoboth Beach a few days after the wedding. We plan to attempt the Mexico trip later in the winter after treatments have ceased.
This brings us to the point of reaching out now to all of you for help. It has taken a long time to get to this point where we have to admit that we need help, as our pride and egos have not allowed us to reach out this way until we virtually hit our knees with the realization that we don’t know how long we can make it on 1 paycheck. We have been scraping by for the better part of almost 3 months, but with many more treatments to go and medical bills adding up, it is time to give in.
The honest fact is that it is not simply that Heather is missing a biweekly paycheck from her full-time job. But more so, that she is missing a deployment that was planned for a significant amount of income. She could make in that 6-month deployment what she normally makes in an entire year. We have taken steps already to reduce any excess expenses possible- we sold her Tacoma truck that was just bought a year ago. We are trying to cut out unnecessary items that we don’t need and trying to shrink the excessive grocery trips and such that we typically indulge in. We have the complicating factor of the wedding that occurred during all of this as well which puts us behind now too.
We have been very fortunate to have wonderful friends who have helped “heather sit” on her sick days so she is not alone while I can work. And still others who have taken her to appointments while I work. I have a very understanding work family that has allowed me the freedom to accompany Heather on many of her appointments or stay with her every now and then when she isn’t feeling well and just needs me. We have been fortunate enough to also receive some small grants from this wonderful organization “The Breathing Room” to help with a few of our medical bills and household bills. But at this point, there are more needs and expenses that we are barely scraping by and that is very hard to admit.
So, it is with all of this information and knowing that Heather is only halfway through her journey, that we have decided to share her saga and ask for help. We also appreciate prayers and emotional support as she continues her journey. We urge all of you to seek medical treatment anytime you feel that something isn’t right. You never know when that can save your life! We were told that most ovarian cancer patients aren’t diagnosed until it is too late as the symptoms are “silent” and mimic many normal bodily functions. We were lucky we sought help when we did, and that Heather’s symptoms were speaking loud enough that we were finally forced to listen!
We wish you all much love, happiness, and peace!
Stacie Kohler
Hatfield, PA
Organizer
Heather Kohler
Organizer
Hatfield, PA