Tag: breast cancer awareness

No Hill For a Climber, We See a Rainbow!

What a glorious sight it is when you behold the beauty of a colorful rainbow following a  severe storm. For at least a moment, we can forget the disaster that has come our way when we spot these gifts from God. We know there will be more storms to face in our path through life, but in the moment we can glory in the knowledge that even out of life’s worst circumstances, an object of beauty can still shine through to brighten our day.

Living in the state of Kansas, the heartland of America  which is also known as Tornado Alley, we know that with each destructive storm that passes our way, there are better days to follow, We also know and understand quite well that there will also be more storms to follow. Some will be minor, some will wipe out entire  towns out on the prairie. It is a way of life for us, that we somehow become accustomed to. And with all this being said, after her last visit to the radiation oncologist, we find ourselves in the peaceful calm after the storm with Loraine’s battle against breast cancer.

We are between storms and we have spotted a rainbow.

For at least the moment, life is beautiful.

Finally, the wounds from her double mastectomy have healed. The infections have gone away for good now, and the ugliness of the radiation burns and radio-necrosis are no longer visible to the eye. We have weathered a multi-front storm that actually began with Loraine’s brother , my best friend Howard’s liver cancer when he became terminal and we took him to care for him several months prior to Loraine’s own diagnosis.

Losing Howard was the end of a long, drawn out and tragic end to the life a good man. We knew his days were numbered when he could no longer climb onto his motorcycle which he had loved to ride. Howard was known for randomly climbing onto his bike and taking off on rides that might take him 1000 miles one way just for a steak dinner somewhere he had seen on the television or on the internet.

It was a sad day when he could no longer ride his bike, he had a bad knee that was complicated by his being morbidly obese. His morbid obesity was complicated by long term Hepatitis C and cirrhosis of the liver. These conditions were eventually worsened by the development of liver cancer and hepatic encephalopathy   which generally occurs in people with chronic liver disease, such as cirrhosis or hepatitis. Hepatic encephalopathy brings on different levels of dementia, which obviously complicated his care in our home even more.

We took Howard into our home in early March of last year. We had a few months where he was feeling better, but once Loraine was diagnosed with breast cancer in the fall, we began seeing more of decline in Howard’s health each day. He was losing his mind to hepatic encephalopathy and his mobility to get around was getting worse. His mobility was a great concern being as he was morbidly obese at almost 600 pounds at one point. He had fallen down in his home shortly before we took him in and I drove down to help him back up, this task took me 45 minutes to do. I swore that day that if he ever fell again, I was going to call the fire department instead of trying to help him myself. I had a fear that he would fall trying to navigate his way from our front door to our driveway, so I had a contractor come in to level my front yard, and to put in a new sidewalk and driveway to accommodate his needs.

I’m not seeking sympathy, nor a pat on the back. We do what we need to do for our loved ones. But, I do feel a need to vent a little in regards to a few family members. At about the time Loraine received her diagnosis, Howard was in his decline. I often had to help him bandage his legs which were weeping fluid from lymphedema, as well I would also have to occasionally help him in getting dressed, putting on his shoes, along with his personal hygiene needs of showering and cleaning up after the toilet.

We do what we have to do sometimes.

We took off work to get Howard to his doctor appointments, as well as doing all his laundry, cooking and cleaning for him. Howard was no longer able to take care of his basic living needs for himself, and from the phone there was a deafening silence from their only  remaining brother and sister.  Neither of them ever called us to check on Howard, or to even see if there was anything we needed to help in his care. But guess who was there wanting to direct things and who had their hands out when he passed. And we were dealing with this after Loraine’s diagnosis of having cancer too. It is a truth that people will show their true colors when times are tough…

January 6th of this year, Loraine underwent her double mastectomy. The operation went very well, and she was sent home from the hospital the next afternoon with drain tubes placed at four locations in her chest.

After a few weeks, the drainage had come to a stop and the drains were removed by her surgical oncologist during an office visit. Loraine was healing pretty well and was in good spirits until a staph infection settled in her left incision sight sometime in February. The infection caused a large, nasty looking hole to appear that had to be cleaned and dressed day and night for a couple months until it finally went away. During the middle of fighting her infection, I took Howard to his final doctors appointment on February 21, where he was informed he needed to consider going into hospice for palliative care as his time was drawing to a close. I got him checked into KU Medical Center that afternoon, Sunday afternoon, I watched him draw his last breath as he passed away. But for the fact we had already been grieving for Howard’s eventual demise for some time, we never had time for truly grieving as we were still battling Loraine’s infection. She could not begin her radiation treatments until she was fully healed. That being said, there came a point when the radiation oncologist made the call that Loraine was not fully healed, but she was healed enough to begin her treatments which could not be put on hold for any longer.

Finally, my dear and sweet wife of 33 years began her radiation treatments in May and finished them in June after six weeks of daily treatments. Radiation is supposed to be easy, yet she suffered from second degree burns and radio-necrosis which brought on another infection afterwards.

Tuesday morning of this week, we took Loraine to a followup visit with her radiation oncologist. Thankfully, I could go with her on this visit as I have not been able to accompany her over the last few months because the Covid 19 virus. Loraine has finally healed  from everything, and the incision sights are no longer angry looking as they have been over the course of the last 6 months. Most of her pain has subsided, yet there is still a little lingering pain that hopefully will go away soon. She still has a small amount of a burning sensation where her radiation treatments were focused, and will be asking about this tomorrow when she goes for a sonogram of her chest and breast area. There is a small knot from a keloid, but other than that all appears to be normal now.

The storm we have been enduring is over now, we have seen the colorful rainbow which brings us joy. Yet, the fight is not over as we never know when the next storm is going to crest the horizon. There will be follow up doctor visits each of the next three months, and then every three months for the next two years. Loraine is a very tough and resilient woman, she was a military spouse who has endured two previous cancers. As she stood at my side during my military career, I will stand at her side for this tough battle of hers.

Will ever hear the words “Cured of cancer”?

I’m not so sure anyone ever truly hears they are fully cured.

What I do know is we will live with the threat of a return of active cancer for years to come.

Even when one has been declared free of cancer, there is always a continued threat.

But for the moment at least, we can finally take a breather and do our best to continue life in as normal a manner as possible. Life is tough and not always fair to any of us, but life still offers us choices to make. We can choose to succumb to bad occurrences, or we can choose to shake it all off and lean forward into the fight of our lives.

We are fighters to the end!

No Hill For a Climber, Radio-Necrosis

Loraine completed her final radiation treatment on June 15th. That should have been the end of the doctor visits until later this month, but that is not how things turned out. The radiation treatments burned her pretty good, second degree burns to be exact. We were not expecting this, nor were we prepared for what came next which was radio-necrosis combined with a bacterial skin infection. Radio-necrosis can occur when eradiating the cancer.  Radiation therapy can cause significant harm to healthy surrounding tissue. As we have learned the hard way, this skin injury can cause considerable pain and suffering to patients who are already stressed by the diagnosis.

How long does radiation burn last?
For it to heal, the skin needs time to regenerate, a process that may take two to four weeks for mild reactions, or several months or more for serious injuries.

Before Loraine’s radiation treatments were completed, her skin began showing signs of being burned by the procedures. About a week or so before her final treatment, one of her physicians instructed her to begin using Silvadene cream on the burns to help ward off any infections. This medication is often used with other treatments to help prevent and treat wound infections in patients with serious burns. It is supposed to work by stopping the growth of bacteria that may infect an open wound. This helps to decrease the risk of the bacteria spreading to surrounding skin, or to the blood where it can cause a serious blood infection. However, while Silvadene can be used as an anti-microbial, the downside as we have since learned, is it can also delay wound healing.

Having never been through any of this, there is no way we could know the effects radiation therapy could have on an individual. We know what we were told, but as with everything else about breast cancer, there is a lot we have had to learn after the fact, and on the run. The learning curve with cancer is huge to say the least.

Loraine’s skin was burned, therefore it was warm to the touch as any burn will be. Then it began to blister which also was not unexpected given the severity of the burns. Still we were not worried until her skin began tearing and essentially ulcerating in the burned areas. This has been quite painful for Loraine and I often awaken to her moaning in pain at night when I am not on the road. The radiation treatments we believed were going to be fairly mild for side effects, but obviously this has not been the case. Sunday, while I was out on the road, Loraine called me because she was in pretty bad pain and she was draining pus and fluids from the burned area where her left breast had been. She said she was going to go to the emergency room which really scared me. In 34 years of marriage, this tough woman has never, not a single time, ever visited an emergency room for herself. Turns out, she now had a bacterial infection working on her. The emergency room doctor prescribed her an antibiotic and pain reliever and then instructed her to get in to her wound care doctor as soon as possible. Today was Wednesday, we got her in to be seen this morning. That is when we learned that the infection was a result of the radio-necrosis, and, it was aggravated by the daily application of Silvadene which she had been directed to use.

Loraine has endured enough pain with these side effects, that she has begged me to not ask her to ever go through radiation again.

I will respect her wishes when it comes to her treatments.

 

No HIll For a Climber, Radiation Burns and Side Effects

I sat down to write this morning with a plethora of things to say and now, I found that the stress of our situation with Loraine’s breast cancer has caused me to suffer a little bit of writer’s block. I hope I do not get to be too rambling with this piece…

I do not want to say there was any malicious thought by anyone by downplaying some of the side effects of radiation treatments for Loraine, her care team have been wonderful. But, the side effects have been worse than we anticipated. Maybe it was just a misunderstanding on our part. I concede this is highly possible, maybe even probable, especially given the state of mind we had been in with her diagnosis while we were still providing care for her brother Howard  in our home for his end stage liver cancer. It seems so overwhelming at times. And then to add insult to injury, there was the deep staph infection that settled in to the mastectomy incision followed by the Covid-19 Corona virus situation. Because of Loraine’s staph infection and the Corona virus, her radiation treatments were put on hold as long, actually longer, than her medical and radiation oncologists felt was safe. However, as we have learned, before radiation can begin, one must be fully healed from their surgery.

The picture at the top is at the base of Loraine’s neck. That radiation burn is not even where the beam is being directed when she undergoes her daily treatments by external beam radiation. This is the most common type of radiation therapy for women with breast cancer. A machine outside the body focuses the radiation on the area affected by the cancer. Before treatment begins, the radiation team will have carefully figured out the correct angles for aiming the radiation beams and the proper dose of radiation. They will make some ink marks or small tattoos on the skin to focus the radiation on the right area. They do this in order to concentrate the beam specifically where the cancer has been found. But, obviously a larger area can be affected by the radiation. We were told that external radiation therapy is much like getting an x-ray, only the radiation is stronger. The procedure itself is painless. Each treatment lasts only a few minutes. The setup time, getting her into place for treatment, would take longer than the treatment itself. We were told that Loraine could experience some skin changes in the treated area similar to a sunburn (redness, skin peeling, darkening of the skin) along with fatigue. After almost a full six weeks of therapy, here is what her skin looks like:

The skin up under her arm is now quite fragile and tearing. This is quite painful to say the least.

In the center of the picture, along her incision, the redness and swelling is where the staph infection had settled in. This area was not fully healed as well as it should have been prior to treatments, but treatments could no longer be delayed.

The markings and little circles you see are where the radiation beam is directed during treatments. The radiation oncologist and her team have to be accurate in directing the beam direction, or other problems can arise. Hell, other problems could arise anyhow from radiation treatments such as:

  • Some women may find that radiation therapy causes the breast to become smaller and firmer.
  • Radiation may affect your options for breast reconstruction later on. It can also raise the risk of problems with appearance and healing if it’s given after reconstruction, especially tissue flap procedures.
  • Women who have had breast radiation may have problems breastfeeding.
  • Radiation to the breast can sometimes damage some of the nerves to the arm. This is called brachial plexopathy and can lead to numbness, pain, and weakness in the shoulder, arm, and hand.
  • Radiation to the underarm lymph nodes might cause lymphedema, a type of pain and swelling in the arm or chest.
  • In rare cases, radiation therapy may weaken the ribs, which could lead to a fracture.
  • In the past, parts of the lungs and heart were more likely to get some radiation, which could lead to long-term damage of these organs in some women. Modern radiation therapy equipment better focuses the radiation beams, so these problems are rare today.
  • A very rare complication of radiation to the breast is the development of another cancer called an angiosarcoma.

I just doctored up Loraine’s burns and she is now off for her third to last radiation treatment this morning.

We have found this product on Amazon to be a great help for some of the burning that is not raw or tearing.

Monday will be the final treatment, but that will not be the final day she will suffer ill effects from radiation. She will glow in the dark for years to come!

Sorry my dear, but you are the one who has the best sense of humor about this…

But seriously, she will have to avoid exposing the treated skin to the sun because it could make the skin changes worse. They tell us that most skin changes get better within a few months. However, changes to the breast tissue could take 6 to 12 months or longer to go away.

Financial Strains and burdens!

I am blessed to have a very good paying job with great insurance benefits. Our financial impact could be far worse than it is on us. As it is though, I have been paying out $1000.00 per month to stay on top of the 20% of our medical bills that come out of my pocket besides the $750 a month I pay out in insurance. But even so, the stress meter gets pegged in the red when you see this on a bill:

I am paying medical bills to Saint Lukes and to KU Medical Center for all of this. We have had bills for the surgery and all of whom involved. Then there are the additional physical therapy bills, the wound care bills from her staph infection, the medical oncologist visits, the radiation treatment bills, and now a new doctor has been thrown into the mix for skin care since Loraine has had the extensive troubles she now has with skin tears. I just paid out $1000.00 last week and we just received this:

I did set up a payment plan for our bills, but one cannot help but to wonder just how high this will pile up over time. I spoke with a wonderful woman of God this morning on the phone to make our payment arrangements at a level that should be still affordable should we ever experience a financial hardship. I think the good Lord directed my call to the perfect person as I felt a sense of peace come over me before our conversation had ended. It seemed she just instinctively knew the right words to say to me, nothing canned or prepared, just a good woman speaking from the heart. God bless and thank you all for reading and following. I am doing this with the hope that we can help others in their battle with breast cancer.

This website is a labor of love solely to help others. Subscriptions are free and easy, I have not, nor will I ever charge a single penny for anyone to access our health and fitness articles.

Please, follow along, and share this with your family and friends.

No Hill For a Climber, Barrage of The Mind

With cancer of any type, one must steel themselves against the constant barrage to your mental state. If you are one who is weak, you had better learn to stiffen your upper lip, as there will be a constant assault on your sanity after a cancer diagnosis. If you are not tough, you had better get tough, life is not always fair, and cancer is a heartless bitch.

Loraine and I have been through a living hell over the last year because of cancer. FIrst we took in her brother Howard who was terminally ill with liver cancer which was brought on by end term Hepatitis C, and then she received her own diagnosis of breast cancer last fall. As we were taking care of all of Howards needs as he was slipping in and out of different stages of dementia, we still had Loraines battle to face. Life has been a bitch in our home, and we have to keep faith it will get better. We have to, and will keep fighting as hard as we can against this ruthless disease. Otherwise, it is going to kick our asses each and every day if we allow it to bog us down. Cancer shows no mercy to anyone, ever.

I sure wish there was a cure for cancer!

How often do we think this, or hear others  say they wish there was a cure. Pretty damn often for some of us for sure. But, there is not going to be a “cure” just anytime soon despite some people beating it.

If all the positive cancer breakthrough headlines are to be believed, then the cure for cancer is right around the corner. But that is a far cry from reality, says Dr. Jørgen Olsen, head of research at The Danish Cancer Society.

“I think it’s an illusion to imagine that after millions of years of this disease we’ll suddenly find a solution. I don’t think that we’ll ever beat it, but I think that we’ll get it under control so that it becomes chronic but not deadly,” says Olsen. (1)

But why can’t we find the secret weapon to beat cancer once and for all?

One reason is that cancer is not just one disease–even individual tumors can vary substantially from one patient to the next and the same type of tumor in different parts of the body can respond differently to medication. Just like any other organism, cancer cells are trying to survive, and they are very good at it. They quickly spread to multiple parts of the body, and they mutate constantly, rendering existing medicines ineffective. Cancer cells are very adaptive, especially when the cancer is at an advanced stage.

There are some similarities between cancer and the principle of evolution. Evolution is driven by natural selection, which means that organisms or cells that survive long-term are those that can adapt when their existence is challenged. As with the use of antibiotics to kill infections, the cells which survive cancer treatments, such as chemotherapy, will often restore the disease after treatment, but now in a more aggressive form that is now resistant to treatment. Then you need a new treatment and the story repeats itself until nothing more can be done. I will never forget the sick feeling in my gut as Howard’s oncologist informed him that nothing more could be done for him and he was recommending end of life palliative care. This was on a Friday, Howard passed away on Sunday, 48 days after my dear Loraine had underwent her double mastectomy for breast cancer. Her radiation treatments are going to be over next week. Cancer is an evil bitch to everyone involved to say the least.

Loraine’s radiation treatments are coming to a close. What’s next?

My sweetheart wrapped up her fifth of six weeks of radiation treatments on Friday. Afterwards, she had a visit with her medical oncologist who informed her there were three new lumps which were not present a month ago. She was in tears when she called me while I was out on the road, and it was all I could do to not pull my semi over to the side of the highway and have a good cry myself.

Life is not fair and cancer is a bitch!

Because of the Covid-19 virus, Loraine has had to go to all of her treatments and doctor visits without me over the last couple of months. She has needed me to be there for her, but the medical facilities will not, nor can they, make exceptions for anyone. The only people allowed inside has been the patients themselves. This is cruel as one who has cancer truly needs their emotional support when consulting with their doctors. We both understand this necessity, but we both need to hear from the doctor exactly what is happening and what the protocols will be going forward. Cancer assaults your emotions and with the overwhelming amount of information there is to absorb, it is best for a patient’s loved one to be present during their doctor visits. The best we can do for Loraine’s next visit is that I will take her and then wait in the parking lot to be there when she comes out. We will use video conferencing on our phones in order that I can be as present as humanly possibly.

Next week, the medical oncologist wants to discuss how we are going to move forward with treatments. She has suggested that Loraine participate in a clinical trial, that Loraine is the perfect candidate for it. She also wants Loraine to get a Dexa Scan and a sonogram as soon as possible before the next visit. Friday, she was even trying to get Loraine in for these on the same day if possible. Since she did not get in, hopefully we will get this done on Monday. This is a bit unsettling to say the least, but we have to keep faith that all will turn out well. Without faith, there is no hope. Without hope, there is no fight. We are fighters!

Cancer Prevention

It’s important to remember that prevention and early diagnosis are key players when it comes to putting the brakes on cancer.  Part of the fight against cancer is to try to prevent it developing in the first place, or at least to develop early detection techniques to spot cases in time to stop the disease before it mutates and spreads. Quite often, people develop cancer because of avoidable habits or lifestyle factors such as smoking, sunbathing without protection, unhealthy diet, exposure to HPV infections, or carcinogenic substances, and radioactivity.

We may not always be able to prevent ourselves from getting cancer, afterall, bad stuff happens to good people every day. However, we can live our lives in a way that we can proactively try to mitigate our chances of developing any type of cancer. If you do not realize this, you should understand that once you’ve been baptized in the fire of cancer your life as you knew it will be irrevocably changed. The apparent randomness of a cancer diagnosis can, and will shake your sense of identity to its very core. Cancer is a sadistic enemy that assaults not only your body but every other area of your life, including your relationships, family life, friendships, finances, career, and even your sense of self. You may be surprised to find the people you thought you could count on disappear from your life. The silence from some family and friends after Howard’s diagnosis was deafening to say the least. However, with Loraine’s diagnosis we have been blessed by plenty of loving support from friends, family and her most excellent care team. We are most humbly grateful for all the love we have received…

 

(1) sciencenordic.com

No Hill For a Climber, Wrapping Up Week 3 of Radiation

Loraine is now close to wrapping up her third week of radiation treatments for her breast cancer, and there are three more weeks to go. Sometimes it feels as if we will never get out of the hurry up and wait mode of thinking.

Getting her into her treatment protocol seemed to take forever because of her struggle in healing after the staph infection had set in. She is almost halfway through the treatments, and now we find ourselves somewhere between hurry up and wait. We would like for the treatments to be done and over with, but the waiting mode of finding out how successful radiation will be is akin to watching a slow moving hand on the clock.

It feels as if we have been through hell over the last year. Last March, we took in and cared for Loraine’s brother Howard who was morbidly obese, had Hepatitis C, cirrhosis of the liver and advanced liver cancer. We were thankful to be able to care for him despite the complexities that came with caring for a terminally ill loved one who was also slipping into different stages of dementia depending on if he was taking his medications as prescribed. Then, Loraine was diagnosed with her breast cancer last fall which significantly increased our level of stress. January 6th, Loraine had her double mastectomy, February 23rd, we lost Howard to his illness; Also in February, Loraine’s staph infection where her left breast had been reared its ugly head. But through it all, even with the great stress we have been under, we still feel blessed with our lives. Through our battles so far, we have been shown great love and compassion from family, friends, co-workers, and even complete strangers who have come into our lives. Loraine’s care team have been beyond phenomenal in their compassionate care and treatments. And, despite the Corona Virus shutting down our economy, we have both been able to keep working full time and have not become too overwhelmed with our medical bills we have received. If anyone has a right to lay down and lick their wounds, it might be us, but we refuse to do so. We are fighters, and we will conquer all that life has to throw our way. We may feel stressed, but thankfully, our sense of being blessed far outweighs that emotion.

Almost halfway through!

Treatment 14 of 30 today.

Before Loraine ever began her radiation treatments we were told the side effects would be pretty mild, and possibly there would be none at all. Well, the side effects are certainly nothing compared to that which can come from chemotherapy to say the least. But, the the side effects are certainly there for her. And with each treatment she undergoes being more intense than the last, we can anticipate them getting worse over the next three weeks of treatments. Thankfully, chemotherapy is not being planned for now.

Loraine has been working full time through her treatments, but now has reduced her workload to part time as of this week because of the fatigue that is associated with her radiation treatments. Fatigue can make it hard for one to keep a normal routine. However, it is best for her to still get in some type of activity each and every day. Activity keeps the body more fit and the mind less stressed than what would come from laying around and licking wounds. My sweet wife is a true fighter, you will never find her feeling sorry for herself.

Loraine has always been fair skinned and sunburns easily. With her radiation treatments, he skin is now becoming pink, like it has sunburn. Because of this, they place a special blanket over her during the treatment to act as a second layer of skin to mitigate the burning of her skin. To help with this at home, she has to apply aloe vera cream multiple times per day to ease the irritation she is now experiencing. I wish for her sake the irritation would end with her treatments, but, the skin reaction from radiation therapy is usually the worst 1 or 2 weeks after radiation therapy ends, and begins to heal after that point. The healing often takes 3 to 4 weeks. I wish she could have been through with all of this before summer time arrives here in a few weeks.

Besides fatigue and burning of the skin, Loraine is developing fibrosis where her left breast had been. This also comes with the territory of radiation treatments.  In addition to treating cancer, radiation therapy alters tissue composition, making tissues thinner, harder and more brittle. Radiation following surgery creates changes to the surgical scar to make it harder and denser, as well as creating fibrotic tissue around the scar. In radiation-induced fibrosis, a key issue is prevention, with the primary approach being use of proper doses of radiation therapy and techniques that minimize the radiation exposure for normal tissue. We feel truly comfortable that Loraine’s care team are doing all they can to minimize any and all side effects which come from her treatments. Everyone on her team are more than compassionate and caring. We feel blessed that she is in the best of hands and will get through this with minimal issues compared to what can be experienced by some.

With cancer of any type, every day is a learning day. I sometimes wish I did not have to know all that I have had to learn, but feel blessed to be able to share our experience with others in order to help them. It helps us to focus on our blessings rather than on our stress. We feel fortunate to be in the position we are in and fully realize how bad life can be for others in the same boat. Therefore, we know to never take life for granted as it can be radically changed for the worst in the blink of an eye.

Live life to the fullest and work towards being the best and healthiest you that you can be.

God bless and thank you for the prayers, and for following along with Loraine’s journey.