Category: No Hill For a Climber, Loraine’s Breast Cancer Journey

No Hill For a Climber, The Infection

Hurry up and wait!

It appears we will be in this holding pattern for maybe the next couple of months until Loraine has healed from her mastectomy enough to begin her radiation treatments. She has had a set back with a deep infection to her incision that was discovered by the wound care specialist that Dr. Butler had referred her to a few weeks back. For all intents and purposes, Loraine’s healing appeared to be coming along fine, there was some dead skin at the incision site, but that was not unexpected and did not look abnormal to either the surgical or medical oncologists that had been seeing her. Dr. Butler, the surgical oncologist thought it would be a good idea to have some of the dead flesh removed by the wound care specialist, Dr. Matson, solely as a precautionary measure to facilitate a speedier healing process. There were no indications of a deep infection from the outside when Loraine went to see Dr. Matson, therefore it was quite the surprise to find out there was actually a very significant infection brewing under the surface within the deep tissues. Visually, there was no indication of redness, swelling, pus or any type of foul smelling discharges from her incisions. We had thought radiation treatments would be able to be started within the next couple of weeks. It is just another thing learned when dealing with breast cancer I guess..

It has been about 4 weeks ago that Dr. Butler prescribed Loraine Silvadene which is a cream that is supposed to help prevent and treat wound infections. She prescribed this solely as a preventive measure as there were no indications of infections in Loraine’s incisions. We applied this cream daily after Loraine’s showers before applying new bandages over the incisions. It turns out that Silvadene is not a medicated cream that Dr. Matson thinks should be used on these types of wounds as according to him, it inhibits the healing process instead of helping it along. When Dr. Matson cut away the dead skin from Loraine’s incision, there was a very foul smell and a bunch of pus lying underneath. He told Loraine to quit using the Silvadene and to now use SilvaSorb on the site instead. He told Loraine that he wished doctors would not prescribe the use of Silvadene on these types of wounds as it slows healing. I only bring this up, not because I think Dr. Butler was wrong in prescribing the Silvadene in the first place, but to give you information to bear in mind should you ever be presented the same situation. You might want to inquire whether the doctor means one or the other, since the names are so similar and the the two medications are both silver based and do similar jobs. Breast cancer, or any type cancer for that matter, is a great learning experience as you will be faced with so many unknowns. While we always knew infection was a possibility, we did not expect the extent of this one Loraine has been hit with. Dealing with this type of thing is not for the timid or those with a weak stomach. Whether you are prepared or not, these types of things just have to be dealt with in the home.

I have to admit, the first dressing change after the dead skin from Loraine’s incision was cut away revealing the infection was tough. There is a hole that you could fit a quarter into that is at least one fourth of an inch deep. The underlying muscle tissue is exposed along with fatty tissue and pus which must be cleaned out with sterile saline solution before applying SilvaSorb ointment and new bandages. I do not have difficulties in seeing sights like this on others, yet seeing it on the love of my life was quite hard. Changing these dressings and nursing the wounds is not a job for the squeamish at all. Once I clean out the pus, I find myself scared to death of causing Loraine any type of pain as I spread the SilvaSorb into that deep pit. Loraine has dealt with serious infections and bedsores in her work as a home health care attendant, but this was too much for her to bear looking at. Therefore, nightly dressing changes has been my job before leaving to work in the evenings. I can’t blame her one bit.

Today’s visit with the wound care doctor.

I took Loraine to see Dr. Matson this morning to have the wound looked at. The doctor took measurements and pictures which were entered into her records and compared with last weeks. Fortunately, the wound is a little smaller yet still has a long way to go before being fully healed enough for her to begin radiation treatments. After  the measurements and pictures were taken, he then cut away dead fatty tissue and debrided the wound. Thankfully, they used a good numbing gel and Loraine does not have full feeling there yet, It looked painful. And then, smart guy me, I just had to stand where I could watch and did not notice that I was standing on the seat controls that raise, lower and leans the seat. I felt like a real goober when the doctor looked at me and told me I was standing on the control. I was so enthralled with watching the procedure that I did not notice the seat was rising as he was trying to work on her. He was friendly enough, but I know it probably had to chap his ass this happened. I know it would mine. Lesson learned is to keep my ass back. Once he was through with debriding the wound, the nurse packed it with a new medicine that he wants her to use instead of the SilvaSorb. This looks kind of like a bandage except it dissolves when in the wound. It is a collagen and silver based medicine. I hope we see more healing next week, the week after and after…

Most women do not get infections after mastectomy.

From BreastCancer.org

  • More than 1 in 20 women (a little higher than 5%) developed an infection at the site of the incision after breast surgery.
  • The risk of infection was different depending on the type of surgery that was being done:
    • 4% for mastectomy with no reconstruction
    • 12% for surgery with implant reconstruction
    • 7% for reconstruction surgery using skin and/or muscle from the belly area
    • 1% for breast reduction surgery

When you are preparing yourself for a surgical procedure, odds are you are only thinking of getting fixed, or getting your diseased parts removed from your body. There is an overwhelming amount of emotions that will flood your mind when dealing with breast cancer, it is almost impossible to think of everything you might need to ask the doctors involved in your care team. If surgery is a part of your treatment for breast cancer and you’re concerned about the possibility of infection, talk to your doctor about:

  • How often infections occur after the type of surgery you’re having in the hospital you’ll be using.
  • How that infection rate compares to the infection rate at other area hospitals.
  • The possibility of your surgery being done as an outpatient procedure or with a short hospital stay after surgery. Many infections after surgery happen because of germs in the hospital environment.
  • The steps that will be taken before, during, and after surgery to reduce the risk of infection. For example, some doctors recommend that people scheduled for surgery use a special washing procedure before coming to the hospital. Other doctors may prescribe antibiotics before or during surgery to lower the risk of infection.

It’s important to remember that most women having breast surgery will NOT develop an infection. If an infection does develop, it usually can be treated successfully with antibiotics. Together, you and your doctor can develop a plan that is the best for YOU.

No Hill For a Climber, Radiologist Visit

Stand down from the Alert 5!

Most of my military career was spent in Naval Aviation, nine of those years in helicopter squadrons with Search and Rescue missions which meant that we were always at a heightened state of readiness – Alert 5, Alert 15, and Alert 30. These alerts are the time we would have from receiving word to launch our alert aircraft until they had to actually be airborne. Alert 5 being the highest state of readiness meant we would have 5 minutes from getting the order to launch and getting an aircrew in the air for a rescue mission or to respond to hostile situations. Alert 30 was a more relaxed readiness posture, but you still had to be prepared for the worse case scenarios to arise. Cancer is like being on an alert status, it keeps you on edge because this evil disease can ramp up and down with a swiftness…

Loraine and I got up this morning still under an Alert 5 status in our heads. Her radiology appointment was this morning, so while we were excited to be getting an idea of what her treatments would be, there was still the trepidation of venturing into the unknown. I have said that cancer can take you on an emotional roller coaster ride, but in between those rides there is little down time in our house as we also having been caring for Loraine’s brother Howard for the last year. Howard has Hepatitis C, advanced cirrhosis of the liver along with liver cancer to boot. With two in the house with cancer, we have our hands full. Just when that emotional roller coaster we are on creeps back into the loading station, it launches again before ever coming to a complete stop.

To help ease the stress this morning I made us a special breakfast of steel cut oats cooked with Saigon cinnamon, nutmeg, and  ginger. I added butter and Swerve brown sugar substitute to the oats and then drizzled a little sugar free maple syrup over the top. This would have been even better if I would have had some chopped pecans to add to it.

Once Loraine and I had eaten, we ventured off to Kansas City to meet Dr. Boersma, the radiology doctor who will be doing Loraine’s radiation treatments.  Once there, we were taken back to an exam room almost  immediately by a wonderful nurse who spoke very glowingly about the doctor. This kind woman really helped to settle our nerves by filling us in on as much information as she could. We are so thankful for all the thoughtful doctors and nurses we have encountered thus far.

The treatment plan.

Dr. Melisa Boersma gave me a good vibe as soon as she entered the examination room. My thoughts that she was truly down to earth was solidified when I noticed that she was wearing cowboy boots. Having lived in many different places, I know the idea of a woman wearing cowboy boots might sound strange, but here in the fly over country of the American mid-west, this is a  sign that you are dealing with a straight shooter who has a very kind soul.

After an examination of Loraine’s incisions, Dr. Boersma began discussing the treatment plan on her part. It could not be said exactly when radiation treatments can begin because as of that moment, we still had not received word on the OncoType test results. Additionally, chemotherapy, if required would have to be completed before radiation can begin. But at least we now know how this part of her treatment will be done.

Loraine will be undergoing External Beam Radiation treatments. It is amazing how far medical science has come with computer technology. For all the times, I have thought technology is advancing too fast, I am also very thankful we have brilliant people who have been able to figure these things out. On her first treatment visit, there will not be any radiation involved. The first visit will be a dry run where the doctor and her technicians essentially get Loraine and the equipment all calibrated to each other in order for the radiation beam to be focused exactly where it needs to be with each and every visit that will be five days per week for six weeks in duration once they begin.

As custom motorcycle builders will create a jig in order to build frames that have true alignment, Doctor Boersma is essentially creating a jig for Loraine.  To do this, Loraine will get three small tattooed dots in specific locations in order to get her body properly aligned for treatment. These tattoo’s will be nothing more than permanent marker points where steel beads will be stuck as guidance points for placement with a CT scan. Once the beads are in place, she will be placed into a CT Scan machine where the team can position her body. Her body will be in the exact same position with each treatment, there will be zero deviations of positioning, all the reference points will be stored in a computer for each use that is specific to Loraine.

Following what I will call the initial set up visit, Loraine will receive the treatments that are essentially like a powerful x-ray. Getting her positioned and the equipment set up will take longer than the procedure itself.  The total time for each treatment visit is scheduled for only fifteen to twenty minutes maximum. Once her treatment is done for the day, she will be able to return to work. I’m sure her gracious employer will be happy about that! Prestige Home Health Care is owned by a wonderful couple, I cannot speak highly enough for them.

With external beam radiation there are very few side effects to be expected. There may be a decline in appetite, and a general feeling of fatigue, but this is not a sure thing. What is to be expected is once the course of treatments are coming to an end, there will be some skin irritation much like a sunburn. The doctor told us, this is actually a good sign that the radiation treatment is going as planned and the beam is hitting it’s target every time. There are a couple creams available to help with this, one being aloe vera based. Essentially, she might need a glorified sunburn ointment.

Dr. Boersma was very thorough and answered all of our questions. We left feeling good about the treatments, but still had the question hanging over our heads about whether or not chemo or hormonal treatments would be the order of the day. After the visit we were able to relax our posture to an Alert 15 status. We were able to rest a little easier but the doctor visits were not over for the day, we still had to do a follow up visit with Dr. Butler so she could examine the incisions once again.

Alert 30 Assumed!

After a brief nap, Loraine and I began our drive over to see Dr Butler. On our way there, we got a call from the medical oncologist, Dr. Satelli, who gave Loraine the good word we have been waiting for.

Praise God above, our prayers were answered!

The OncoType test results are back and Loraine will be able to undergo hormonal therapy treatments rather than having to do chemo-therapy! Of course we are not out of the woods yet, but this is great news for us. Chemo is such an ugly treatment with all the sickness involved. Being real about it, chemo is akin to poisoning the body to kill off cancer cells. Chemo kills cancer and healthy cells alike. The difference being that cancer cells cannot repair themselves as healthy cells are able to. We are very thankful that Loraine will not have to go through such an ugly treatment protocol. The next part of this good news is the hormonal treatments can be given at the same time as radiation treatments. She does not have to wait much longer now for treatments to begin! All that is required now is Loraine needs to be fully healed from the surgery, and she is getting there.

Once at Dr. Butler’s office, she examined Loraine and as a precautionary measure recommended she see a wound care specialist for her incision. The incisions are healing fine, but with some of the dead skin that comes from a flap type wound, she wants a wound care specialist to trim back some of the dead skin and to give her specialized ointments to help with further healing. The last bit of good news for the day is Dr. Butler released Loraine to return to work once she has seen the wound care specialist. With radiation and hormonal treatments, my dear wife can be able to get her life back to as normal as possible under the circumstances. She will be able to work during these treatments, where should she have had to undergo chemo-therapy, there is no way she could have worked. My sweet wife has been a hard worker her entire life, and she is not one to ever sit still. I cannot help but to believe that with the grace of God, and life returning back to normal, she is going to kick this third cancer in the butt good and hard. Loraine is a fighter, she is a damn tough woman. She will prevail in this fight!

We are so thankful and blessed.

We are so thankful and proud of how our daughter Jennifer and our three beautiful granddaughters have come through during this time of need. They have brought meals to us that we can heat in the crock pot to ease our stress. And, to keep Grandma’s spirits high, they have been making arts and crafts together. I love seeing my girls enjoying each other the way they have been. I only wish our daughter Molly and  granddaughter Nishi were here too. As it is, Loraine gets calls daily from Germany, we know that if they were closer, they would be here too.

In life, we can be knocked down. Then to add insult to injury, we can be kicked before we get back up. Sometimes cancer can feel like a steel toed boot smashing into the ribs when you are down. But, the pain of cancer is greatly mitigated by a faith in God, and the loving support of family and friends. To all who have checked in on us, and kept us in your thoughts and prayers, we love each and every one of you. God bless, and thank you for reading.

David

No Hill For a Climber, First Oncologist Visit

“Hurry up and wait!”

“Hurry up and wait” has been a military mantra that has existed since the beginning of time. I had hoped when I retired from the military that I had left that mindset permanently behind me, Hell no, it appears that “hurry up and wait” also applies to the medical community when it comes to dealing with cancer.

A lump, or abnormality is found during a routine doctor visit – hurry up and wait to get in for a mammography.

Mammography confirms the presence of a lump – hurry up and wait to get a biopsy done.

The biopsy has been completed and the pathology reports are returned – hurry up and wait for a mastectomy which is performed by a breast oncology surgeon.

The mastectomy was expertly performed, which is followed by three weeks of more waiting in order to hurry up and see another oncologist on the treatment team for a treatment plan.

We saw the oncologist today to learn we will be waiting for more pathology testing to be done and treatment will have to wait until Loraine has fully healed from her mastectomy. And now, we also have to wait a short time to see the radiologist who will be doing the radiation treatments that are necessary before either chemo or hormone treatments.

There is a lot of “hurry up and wait” when it comes to cancer. While the diagnosis is scary as hell and you want the cancer removed and or treated “right now”, it does not work this way. All this being said, Loraine’s cancer treatment team of doctors and nurses are phenomenal. I am only relating this information to you in order that you can know before hand, should God forbid you ever receive a cancer diagnosis, that there is a process that has to be followed. Treatment is not done right away, surgeries have to be completely healed, pathology’s have to be completed. Successful treatment requires that all the proverbial ducks are in a row, and none are straying. We want answers and treatments right now, there is a fear that comes with not knowing what the future holds. The “not knowing” can make time stand still when you have to “hurry up and wait” between visits with the treatment team. As afraid as we might be, we have to place our trust in the wisdom of the physicians involved. Our sense of urgency is obviously going to be high, but the professionals on the treatment team see these kinds of things every day when they report to work. I am quite thankful to say, Loraine and I are completely comfortable with her treatment team, and they have our full trust that they are going to take excellent care of her.

After a biopsy has been performed, a pathologist examines the tissue microscopically to check for cancer. The pathologist will make a report that provides information that helps to describe the breast cancer and helps you and your oncologist to make decisions regarding your treatment options.  The pathologist helps to determine the stage of the cancer by a system called TNM: the T describes the type and size of the tumor; N is for the number of lymph nodes that have cancer present, and the letter M signifies that cancer has spread outside of the breast and regional lymph nodes. The pathologist also determines several characteristics of the breast cancer that help the oncologist to formulate treatment options and make predictions about the risk of spread. These include hormone receptor status, tumor grade, growth rate, margin status and HER-2 expression (normal versus over-expression).

Loraine’s breast cancer is a ductal carcinoma  which means it originated in a milk duct. Her cancer involves Non-invasive (In situ) and Invasive cells. The tumor was 3.8 cm, or about the size of a golf ball. For a better understanding of the two types of cells:

Non-invasive (In situ) cancer cells stay inside the milk ducts or milk lobules in the breast. These cells did not spread into or invade normal breast tissues.

Invasive which most cancers are, break through the small area where they start and then venture into normal breast tissue or other areas around the breast. Sometimes, these cells spread to other parts of the body through the blood or lymphatic system.

Because the margins were negative, it appears no more surgery will be required. Good lord I hope not. As Loraine likes to joke – never take a nap at Saint Luke’s North, they steal body parts from you…

Tumor Grade

Tumor grade compares cancer cells to normal breast cells, Based on the comparisons, a “grade” is given to the cancer. Note: The “grade” is not the “stage”.

Grade 1 (low grade or well diferentiated) These cancer cells still look like normal cells. These cancers tend to be slow growing.

Grade 2 (Intermediate/moderate grade or moderately differentiated) These cancer cells do not look like normal cells. They appear to be faster growing and they tend to stick together.

Grade 3 (High grade or poorly differentiated) These cancer cells have irregular shapes and and stick together. They tend to be fast growing.

Loraine’s cancer is “Grade” 2

Lymph Node Status

Loraine’s cancer has spread to one lymph node and these cells have extra-capsular extension which means the cells were coming outside the lymph node.

Whether or not you have cancer cells in the lymph nodes which drain from the breast is one of the most important pieces of information about the risk of cancer spreading. In general, negative lymph node status is better than positive, and a low number of positive nodes is better than a higher number.

Hormone Receptor Status

Loraine is positive for both Estrogen and Progesterone.

Normal breast tissue has receptors for estrogen and progesterone. A breast cancer that is hormone receptor positive for either Estrogen or Progesterone means you may benefit from hormonal therapy. Most hormonal therapy is in the form of oral drugs. A breast cancer that is negative for Estrogen and Progesterone will not benefit from hormonal therapy.

HER-2 (neu) Expression Status

HER-2 is a promoter gene that helps control how cells grow, divide and repair themselves. Twenty five percent of breast cancers over-express HER-2 and these tumors tend to grow faster and have a greater likelihood to metastasize. Loraine’s IHC, or ImmunoHistoChemistry test came out negative. This is a good thing!

Where we are right now.

Surgery has been completed with the removal of both breasts in their entirety. Loraine is in high spirits and is healing nicely, my dear wife is a tough one! Being as the cancer has spread to a lymph node, radiation is a given for the next step in this journey. However, no treatments can begin until she has fully healed from the mastectomy.

Tissue has been sent to a lab in California for further analysis, or testing called OncotypeDX. Once this testing has been completed, we will know for sure whether she can receive hormonal treatment or if she will have to endure chemotherapy. Hopefully she will only have to do the hormone treatments. If you have never heard of hormone treatment here is how it works in layman’s terms: Cancerous cells that have formed because of Estrogen are unlike normal tissue cells. Think of a normal tissue cell like you would a room in your home with maybe one or two doors leading into it, you have better control over who or what enters that room. Cancer cells that are a result of hormones, are akin to that same room in your home except that it now has several open doors allowing bad players to invade your space as they please. The hormonal treatment cuts off the hormone production which then slams all those damn open doors closed to the bad guys. The bad guys will find themselves evicted with hormone treatment.

Physical Therapy

Tomorrow morning we will head to the physical therapist office for Loraine’s first therapy session and also to pick up her compression sleeves. Unfortunately, she will likely need to wear compression sleeves the rest of her life in order to prevent lymphedema from occurring in her arms and hands. This is a risk anytime lymph nodes have been removed. The other component to combating lymphedema is a healthy diet and weight loss, and then weight management along with light exercise.

We still have many days of “hurry up and wait” ahead of us, but the future should be less stressful as we are now armed with more information that we had been. The not knowing, second guessing, predicting outcomes and everything else that comes from a lack  of full knowledge is maddening to say the least. Hopefully now our stress levels will continue to drop as we lean forward and drive on.

To all our family, friends and others who have expressed their love and support, we are eternally grateful to each and every one of you. God bless, and thank you for reading.

 

No Hill For a Climber, Fight Back Damn It!

Cancers of all types are an evil bitch that will destroy your quality of life and rob you of every bit of your dignity if you allow it. Cancer is an equal opportunity offender and does not give a damn about your race, gender, sexuality, religion  or socio-economical back ground. Cancer does not give a shit who or what you are, it takes out the rich among us as rapidly as it takes out the poor. It will kill those who have lived the healthiest of lives and spare those who did not. Often, there is no rhyme nor reason to who it affects and why. There is nothing right nor fair about cancer, you might have never touched a cigarette in your life, yet find yourself dying with lung cancer. You may have never touched a drop of alcohol in your life, to only perish from liver cancer. Sometimes we might get a form of cancer simply because of an unlucky draw of the short stick. As  powerless as we might feel against the ravages of cancer, there are still steps we can take in order to improve our quality of life should we or a loved one become afflicted.

You are not entirely a helpless victim!

As if cancer is not enough of an insult to the human body, many of the treatments are akin to rubbing salt into a wound. Many treatments can be debilitating by making you even sicker than the disease the medicines are designed to help slow down or cure. If you have been diagnosed with any type of cancer, it is imperative on your part to maintain your immune system the best you possibly can.  The tricky part is cancer cells develop from our own cells, therefore our immune system doesn’t always know that it should attack them. Sometimes the immune system knows that cancer cells shouldn’t be there, but more often our immune system doesn’t notice cancer cells. Cancer cells can even turn off the immune response so that the immune cells don’t attack them.

You can fight back!

Common sense would dictate that if cancer can trick our immune systems when they are healthy, then it could really run roughshod over your body if your immune system is weak. Our immune system gets weakened when the cancer itself or treatments like chemotherapy or radiation therapy, affects the bone marrow. Blood cells are made in the bone marrow and when it’s affected by cancer or its treatment, the number of blood cells that are made are lower than normal. When blood cell counts are low, the body can’t fight off an infection very well.

Your first line of defense is to choose a healthy lifestyle.

Following general good-health guidelines is the single best step you can take toward naturally keeping your immune system strong and healthy. Like any fighting force, the immune system army marches on its stomach. Healthy immune system warriors need good, regular nourishment. People who are malnourished are more vulnerable to disease. Every part of your body, including your immune system, functions better when protected from environmental assaults and bolstered by healthy-living strategies such as these:

Don’t smoke

Eat a diet high in fruits and vegetables.

Exercise regularly.

Maintain a healthy weight.

If you drink alcohol, drink only in moderation.

Get adequate sleep.

Take steps to avoid infection, such as washing your hands frequently and cooking meats thoroughly.

Try to minimize stress.

Regular exercise is also one of the pillars of healthy living. It improves cardiovascular health, lowers blood pressure, helps control body weight, and protects against a variety of diseases. Just like a healthy diet, exercise contributes to general good health and therefore to a healthy immune system. It may contribute even more directly by promoting good circulation, which allows the cells and substances of the immune system to move through the body freely and do their job efficiently.

A cancer diagnosis may leave us feeling helpless. There is little we can do by ourselves to stop the progression, therefore we must place our faith and trust in doctors and other medical professionals to heal us from the ravishes of cancer.  If you do not want to feel quite so helpless, then make it a point to be proactive in the treatment of your disease. The doctors and their staffs will do all they can medically for you, therefore if you want to be cured, you must stand up and do your part of the fighting too.

You have choices to make.

You can choose to live as healthy as you can by eating a nutritionally sound diet. You can choose to follow your doctor or nutritionists orders by eating or not eating foods as they have directed.

You can choose to try to keep your body as physically fit as possible under the circumstances. Getting to and staying at a healthy weight is important to reduce the risk of cancer and other chronic diseases, such as heart disease and diabetes. Being overweight or obese increases the risk of several cancers, including those of the breast (in women past menopause), colon and rectum, endometrium (the lining of the uterus), esophagus, pancreas, and kidney, among others. Being overweight can increase cancer risk in many ways. One of the main ways is that excess weight causes the body to produce and circulate more estrogen and insulin, hormones that can stimulate cancer growth.

You can choose to maintain a healthy mindset and a fighting spirit.

You can take actions to protect yourself from getting cancer in the first place.

The evidence for this is strong. The World Cancer Research Fund estimates that about 20% of all cancers diagnosed in the US are related to body fatness, physical inactivity, excess alcohol consumption, and/or poor nutrition, and thus could be prevented.

No Hill For a Climber, Understanding the Pathology Reports

With a cancer diagnosis it often seems as if for every question that gets answered, a half dozen more will pop up. At times, I’m not too sure if my over active and inquisitive mind is a blessing or a curse. By my very nature, I am compelled to fix problems, and to do so, it requires that no stone is ever left unturned. By obtaining answers to my multitude of questions, it helps me in thinking through further questions that must be asked, even if the answers to them are going to be difficult to hear. I am an optimist by nature, but I am also a realist. I would much rather know uncomfortable truths than to be comforted by gentle sugar coated platitudes designed to make me feel better. Sugar coating fixes nothing, ever.

Loraine and I have been caring for her brother Howard for the last year who also has cancer. He has liver cancer that is now at a pretty advanced stage. There is only one treatment protocol even being considered for him now, and it it damn scary to say the least. On top of this, I have a very demanding  trucking along with my continuous toils on my website. I must be careful in not conflating problems that arise with his illness over problems that have arisen with Loraine’s when I am fatigued. So far, this has not been too much of an issue, but I am often mentally and physically exhausted. I do not have a regular sleep pattern because of my job, plus my PTSD has made me a chronic insomniac for several years now. Actually, I have not had good sleep for a few decades now. It is what it is I guess. We are more prepared for personal battles than we sometimes give ourselves credit for.

Pathology Report

Sentinel lymph node, left, biopsy:

    • Metastatic carcinoma involving one of one lymph node.
    • Carcinoma is 4 mm in greatest dimension
    • Extranodal extension is present.

A few lymph nodes were removed from Loraine’s arm pit area on both sides during her bilateral mastectomy. This was done to confirm if the cancer has spread outside of the original tumor. One small breast cancer mass measuring 4 mm was found to exist in one of her left side lymph nodes. While this was not something we wanted to hear, we are thankful no other cancer was found in any of the other lymph nodes. We already knew from the first visit with Dr. Butler that if cancer was found in the lymph nodes, then radiation treatments were definitely going to happen, with a possibility of chemotherapy too. We will know further treatments once we have seen the oncologist and radiologist on the treatment team here soon.

Extranodal extension simply means the cancer has metastasized.

Left breast, mastectomy:

    • Invasive ductal carcinoma and ductal carcinoma in situ, completely excised
    • Lymph-vascular invasion is identified.
    • Fibroadenomas

My younger sister passed away from adenocarcinoma of the cervix, therefore seeing “adenoma” used in any term associated with breast cancer was terrifying to me. Thankfully,  fibroadenoma’s are  noncancerous tumors in the breast, that could still require some form of treatment for some women. These lumps are actually fairly common, yet they should still be taken seriously.

Invasive ductal carcinoma (IDC), also known as infiltrating ductal carcinoma, is cancer that began growing in a milk duct and has invaded the fibrous or fatty tissue of the breast outside of the duct. IDC is the most common form of breast cancer, representing 80 percent of all breast cancer diagnoses.

Ductal carcinoma in situ (DCIS) is the presence of abnormal cells inside a milk duct in the breast. DCIS is considered the earliest form of breast cancer. DCIS is noninvasive, meaning it hasn’t spread out of the milk duct and has a low risk of becoming invasive. DCIS is usually found during a mammogram done as part of breast cancer screening or to investigate a breast lump.

While there is no good cancer, it is a relief to know that what was found in Loraine’s pathology report is that hers is both an early form (DCIS) and the most common (IDC) and treatable forms. Ladies, never ever forget, early detection saves lives. If you find a lump during self examination, get yourself to a doctor and have it evaluated. Your life depends on it.

Axillary contents, dissection:

    • One lymph node negative for malignancy

Right breast, mastectomy:

    • Fibroadenoma, measuring up to 9 mm in greatest dimension.
    • One lymph node negative for malignancy.

The pathology findings was followed by four or five more pages of medical jumbo mumbo that only a doctor can make sense of. Kind of like legal documents where five hundred multi-syllable words are utilized when only 50 common words would suffice. By explaining in common layman’s language to you what the reports mean, it also helps to bring myself to a more clear understanding of what we are facing.

Loraine and I have humongous challenges in the future ahead of us. We know that by the very nature of cancer there will be a mixed bag of good days and bad. With cancer,  you might find humor in topics that others will not know not know how to respond to. We might laugh when others might cringe. We have even cracked jokes about her getting a variety of prosthetic bra sizes to keep people guessing Loraine’s cup size. I have seen the comeback of a fierce fighting spirit in my dear wife that reminds me of why I fell in love with her in the first place. This same ferocity is how she survived the difficult years of my military career. As tough as my assignments might have been, I can still appreciate the hardest job in the armed forces belongs to the spouse of a service member.

This coming Tuesday, the drains should be all removed and Loraine will be able to begin returning to some of her normal activities. Her faith in God above has kept her spirits high, and it has been a chore to keep her from over doing it during the last two weeks of recovery. Nothing will keep my sweet heart down, we will beat this.

No Hill For a Climber, Pathology Findings

First and foremost, I want to thank God for giving Loraine and I the strength to face the uncertainties of life that we are now facing. Our faith will carry us through this journey.

Loraine and I also want to convey our gratitude to Dr. Elizabeth Butler and her entire staff for their compassionate care through this process. Dr. Butler and her nurses are beautiful souls who I firmly believe are in their profession because of a deep love for helping others to live their best lives under the most difficult of circumstances.

We are beyond blessed with our loving daughters and son in laws along with four beautiful granddaughters who have been a constant source of selfless loving support to Loraine and I both. Nothing has been too much to ask of my lovingly devoted girls.

To all family and friends who have called and checked on us each day, we love you dearly.

Pathology Findings

Tuesday morning Loraine and I drove to the Breast Cancer Clinic at Saint Luke’s for a post surgery follow up visit with her surgeon and to learn what was revealed about her breast cancer in the pathology reports. It was an anxious drive where we were both quite nervous about what would be revealed to us, yet relieved that we would now have answers to our many questions. I will say that our thoughts were that even if we were to hear bad news, it would be much more comfortable than the antagonistic not knowing that we had been living under. At least with the pathology reports in, we could begin planning the next steps in this difficult journey.

The week between Loraine’s mastectomy and the first follow up visit have been tough, yet my sweet wife has pulled through like a real trooper. Her spirits have been high as a result of her faith in God above, and her inner fighting spirit has really come to light. She has shown a true display of intestinal fortitude with this breast cancer, and has not let it get her down.

Loraine has experienced her fair share of pain following the mastectomy, but it has not been as bad as we had anticipated it would be.  Dr. Butler informed us that a mastectomy usually involves a lesser degree of pain than a lumpectomy because all or most of the nerves have been removed, therefore there are fewer receptors if any to transmit pain signals to the brain. Instead of pain, one of Loraine’s biggest issues has been adjusting to having four drains with suction bulbs hanging from just under her arm pits. But these should come out next Tuesday since she is healing really well.

Most of Loraine’s bruising has gone away, but some of the skin around the incisions is turning black and leathery. This looks kind of scary, but it is a result of the skin essentially being  a large flap wound. Because there is not a sufficient supply of blood to a few areas, the skin will simply die and slough off over the next week or so. She was given a prescription for Silvadene to stop the growth of any bacteria that may infect the incision.

After a thorough examination, Dr. Butler went over the pathology reports with us. It turns out the cancer was worse than anticipated, it was larger and has spread beyond the tumor. The tumor itself had grown to 3.8 centimeters which is pretty sizable and the cancer had spread beyond the tumor and into one lymph node. The tumor itself is a invasive ductal carcinoma that had metastasized to surrounding breast tissues and a lymph node. This diagnosis now means that radiation treatments are definitely in the works, and chemotherapy is now a possibility too. None of these treatments can begin until she has is fully healed from the mastectomy. We will now soon be meeting with two additional doctors on the treatment team. One physician is an oncologist, the other is a radiologist. We had hoped and prayed that the only course of action would be hormonal therapy, but I guess that was not in God’s plans. But, at least we are no longer bearing the heavy weight of uncertainty. The burden of not knowing is much worse than knowing. Again, at least now we can plan ahead for the future.

On a lighter note, Loraine was given a prescription for prosthetic bras to wear once she is fully healed. We have kind of laughed that she should get a variety of different cup sizes to keep people guessing if she is actually a B or a Double D

God bless each and every one of you who are following Loraine’s breast cancer journey and who keep us in your thoughts and prayers.

With cancer, there are fears and uncertainties which must be overcome. As with the uneasiness that comes from facing down a bully, the same mindset has to be incorporated when staring down cancer. You cannot allow fear to overwhelm your thinking. The lopsided fight is not one of your choosing, but you have to be prepared to throw back hard punches of your own in order  to defeat this cruel disease.

We are a family of fighters. Together, we will triumph!

No Hill For a Climber, Caretaker Thoughts

It was a week ago yesterday my beautiful wife Loraine underwent her double mastectomy. It has been a week of sleepless nights for a number of reasons such as pain, stress and worry. Later today we will be meeting with Dr. Butler to receive the full pathology reports where we will learn the full extent of the cancer, and it will be determined when she can begin undergoing radiation treatments and possibly chemotherapy too. An appointment will also be made with a different oncologist on the Saint Luke’s team who will be putting together the actual treatment plan. My job takes me out on the road tonight, so I will be writing about the pro’s and con’s of available treatment plans later this week.

I am going to give my best attempt to not get too rambling with this article, but I honestly have not slept more than a couple hours at a time ever since Loraine’s diagnosis, so please bear with me if I do take you through an entire forest of my thoughts just to show you a tree.

Family and friend support.

Loraine and I have received a considerable outpouring of love and support from family and friends since her diagnosis and surgery. There have been daily calls to Loraine from many people, others have delivered food to the house after her surgery in order help us from needing to cook. Our wonderful daughter Jennifer, along with our beautiful granddaughters, have come to the house several times now to help with cooking and cleaning. I have had several people reach out to me as well. There have been people I never would have expected that now contact me regular, letting me know they are there if I need someone to talk to. We love each and every one of these thoughtful individuals.

However, the flip side to all of this love and support is the unexpected silence from the phone when it comes to others.  The silence from some can be quite deafening! Loraine and I do both have a good support network, and I understand that people are busy with life and problems of their own.  I am not looking for long drawn out conversations nor sympathy. But know that sometimes a simple heartfelt message can mean the world to one who is suffering.

I damn sure do not want empty words of promises to be there if we ever need help, only to find the one making promises is conveniently too busy when you need it.

Adjusting to wound care.

Even though a mastectomy is a surgical procedure, the aftercare is still wound care. Loraine has two sets of stitches that are both at least nine inches long with two drain tubes emanating from each incision. Monitoring the incisions is a must in order to identify infection or other problems should there be any. And along with this comes keeping the drains emptied and the contents documented on a log provided by the surgeon.

Loraine’s pain level following the mastectomy has been better than I anticipated it would be. Not saying it does not hurt, but I honestly thought it would be much worse for her. One of the biggest issues for her has been adjusting to sleep with the drain tubes with suction bulbs hanging from her sides. One wrong move in your sleep can have your body painfully tugging at the drains. Should you ever experience this, you need to keep your drains secured to where they cannot be pulled as you roll onto your side during sleep.

Caretakers, stick to your normal routines!

As a caretaker of a loved one it is paramount that you still take care of yourself. You cannot help your loved one if you too become sick in the process.

Now is not the time to let healthy nutritional habits become derailed. Stress eating of unhealthy foods might make you feel good in the moment, but they only serve to damage your health in the long run. If you think it is fine to make an exception because you are tired, hungry and stressed, then those exceptions will become the norm. You could easily find yourself sick and morbidly obese. This helps no one, and especially does not help you.

If you have an established exercise regimen, keep it. If you do not, you might consider beginning one, even if it is only walking.  Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. If you’re not an athlete or even if you’re out of shape, you can still make a little exercise go a long way toward stress management.  Regular exercise will help  shed your daily tensions through movement and physical activity, you may find that this focus on a single task, and the resulting energy and optimism, can help you remain calm and clear in everything you do.

If you have activities of any type that you normally do, then stick to them as much as humanly possible. It is perfectly fine for you. While it might be selfless to give up all that you enjoy to care for your loved one, it is also selfless to maintain your own life in the process. You have to take a mental break from time to time in order to not burn yourself out. You need the interaction with others, you need to share a good time and laugh with friends.

Stay on top of your medical bills.

I know this is a tough one for those on a tight budget. Hell, the financial burden is a tough one for all. There has been a quarter million dollars billed already with Loraine’s office visits, procedures and surgery. And we are just in the infancy of this battle.

Make payment plans early with your providers that you can live with. It will do no one any good if you are not able to buy groceries or to pay your utility bills if you are only able to pay doctors and hospitals. Doctors and hospitals will work with you, but you have to stick to your agreements too.

If money is extremely tight, then consult with your doctor and hospital about financial assistance that may be available to you. There is a lot of help out there for you, but you have to do the leg work to get it. There are benevolent organizations that donate millions of dollars each and every year to needy people, but you have to reach out for it, they do not seek you out. That would be a monumental task for any organization, you have to have personal initiative and accountability to find help. This is just a simple fact of life.

In caring for your loved one, do not quit loving yourself too.

No Hill For a Climber, What To Expect After Mastectomy

You might be the one actually facing the process of a mastectomy, or maybe you are a caregiver to a loved one. Either way, from my point of view as a loving husband and caregiver to my beautiful wife of 33 years, I’m not sure anything can fully prepare you for the impact of a mastectomy. You know the breasts are going to be removed, and maybe you have been told there will be drain tubes inserted for the healing process. You might have seen a picture such as the one above and thought “oh, that does not look too bad”. Those pictures give you an idea of what you will be facing, but they do not actually prepare you for the reality of seeing this up close and personal. The difference in the picture and real life is as stark as the difference between a very slight exposure to pepper spray available to  the civilian population and that of 4% OC pepper spray we utilized in the prison when I was a Correctional Officer.

On Sunday afternoon, the day before Loraine’s mastectomy, after I had come off the road from my trucking job I met Loraine at Target to buy her some new pajamas. We knew from her visit with her physical therapist that she would not be able to raise her arms above her head, and pajamas that button down the front would be the easiest for her to put on and remove by herself. We found a couple nice sets of soft button down pajamas and made our purchase. We got the same size as Loraine normally wears and did not foresee any problems with the fit being as her D-cup breasts were going to be removed. These pajamas should be a perfect fit, yet we found out yesterday after she was getting out of her hospital gown the size should have been a bit larger than normal.

Yesterday morning before Loraine’s discharge, her nurse navigator Melissa came by with instructions for going home. Part of these instructions consisted of how to care for the incision drains and suction bulbs. This instruction involved emptying them before the bulbs get over half full, and how to strip the lines should they become blocked by clotting blood. Before proceeding with these instructions, Melissa asked if I was squeamish at all. I’m not, but I can see where this needs to be asked. These drains are long tubes which the surgeon inserts into the breast area or armpit to collect excess fluid that can accumulate in the space where the tumor was. The tubes have plastic bulbs on the ends to create suction, which helps the fluid  and some blood to exit your body.

No problem! This is a pretty simple concept.

No hill for a climber!

And then it was time for her to check out of the hospital…

We packed all our belongings that we had brought with us for the overnight stay back into our bags, and left Loraine’s pretty new pajamas out for her to wear home. We wanted her to be comfortable for the ride. Yet, when I was trying to button her pajamas, we discovered that the drain bulbs which are kept in bags that were fastened to the lower sides of the ace bandage covering her chest were not allowing for full closure at her midsection.

Lesson learned ladies. If you are going to go through with a mastectomy, do yourself a favor and buy yourself pajamas that not only button down the front, but also pajamas that might be a size or two larger than you believe you might need in order to accommodate swelling, and the four drain tubes and their carry bags that will be necessary. You cannot leave the bulbs dangling by their tubes. Dangling drain bulbs would cause you problems you can be assured you will not want to experience anytime soon.

Melissa instructed us to monitor the amount of output from the four drains. She gave us a couple  of small measuring cups and syringes for doing this task along with a log sheet where we are to fill in the date, time and quantity of fluid from each drain. This record will be brought to follow-up office appointments to help determine when the drains can be removed. Drain removal could be as soon as one week, or as long as three weeks from the surgery.

We have discovered so far, that the drains can be emptied and logged at about 5 hour intervals when Loraine is due for her pain medication. Although your experience could be different, and Loraine’s could change. In order for the drains to work properly, the suction bulbs must be emptied before they become half way full as the fuller they become, the less suction they will provide. This would cause the fluids to not empty from the incision sites as they should. This can also lead to the drains becoming clogged with clotted blood.

Shortly after we got home from the hospital, we decided to try our hand, rather my hand, at draining the bulbs. This went easy enough for the first go round. I removed the bulbs individually from their carry bags, removed the stopper, squeezed the contents into a cup, measured it, and then made my log entry.

Too easy!

I then squeezed the bulbs to create a suction when I reinserted the stopper and put the bulb back in their bags. No problems. Then with the next cycle five hours later, I went about the same procedure, but noticed a little bit of clotted blood in each line. No problem, I have been shown how to strip the lines. This is too easy. Until I discovered to Loraine’s detriment, attention to being gentle is of upmost importance. I grasped the tube as instructed in one hand, squeezed it between my thumb and finger of the other and began pulling down. When you do this, you must take extra care to not allow tension on the drain tube to pass beyond the hand that you are grasping it with. Loraine cried out in pain as the tension from me stripping the line was creating a painful pulling sensation up inside her body. I discovered the best thing to do is to hold the line against the body in a non-painful site in order to keep from putting tension on the tube. By not holding my grip against her body, when I began stripping the line of blood clots, my grip hand had also moved down as the tube stretched downward.

You might feel overwhelmed by the amount of information you have to absorb as the patient or caretaker. However, it is critical that you still pay close attention to all of your instructions. Take notes, ask questions. The only dumb question is the question not asked.

We got through the night alright. At midnight we got up so Loraine could take her pain medication and for me to empty the drain bulbs, then we repeated this again at 5:00 a.m.  About 10:00 a.m., it was shower time. You have to steel yourself for the first shower. I thought I was better prepared since I had been doing the drain tubes with no issues other than when I accidentally put internal tension on one when stripping it. When you have had a mastectomy, you will be limited on being able to put your arms and hands above your head, yet this will be somewhat necessary in order to remove the inner compression top that is almost just like a 1970’s era tube top that was popular with all the girls back in the day.

I first unpinned the drain bulb bags from the outer ace bandage that is wrapped around her chest. Then after unwrapping the ace bandage, it was time to get the tube top bandage off. It caused Loraine some pain and discomfort during removal, but we managed without it getting too bad. This is not something you just pull off the body. Once it was removed, we both were able to see exactly what her chest now looks like. My dear wife will always be beautiful in my eyes, even without her breasts. She is the love of my life and the removal of her breasts is not an issue. But, what I found shocking, the sight that made me want to cry for her was how bruised her upper torso was. Where her breasts had been, the tissue is greatly discolored and bruised. It looks as if someone had used her chest for a professional boxers punching bag. It was all I could do to maintain my emotions for my sweet woman while assisting her with her shower. I know the bruising and discoloration is temporary, but feel it is necessary for people to know what they will see the first time you or your loved ones removes the bandages. Seeing my wife of almost 34 years like this was breaking my heart for her. It is things like this that makes me not too sympathetic to people who whine over the smallest of problems in their lives, especially when their petty issues are entirely self inflicted. My dear wife never asked for this to happen, but sometimes bad shit happens to the best of people.

 If you are undergoing a mastectomy, here are a few tips to help you during your healing and recovery at home:

  • Rest. When you get home from the hospital, you will probably be fatigued from the experience. Allow yourself to get extra rest in the first few weeks after surgery. Read more about managing  fatigue.
  • Take pain medication as needed. You will probably feel a mixture of numbness and pain around the breast incision and the chest wall (and the armpit incision, if you had axillary dissection). If you feel the need, take pain medication according to your doctor’s instructions. Learn more about managing  chest pain, armpit discomfort , and general pain. 
  • Take sponge baths until your doctor has removed your drains and/or sutures. You can take your first shower when your drains and any staples or sutures have been removed. A sponge bath can refresh you until showers or baths are approved by your doctor.
  • Continue doing arm exercises each day. It’s important to continue doing arm exercises on a regular basis to prevent stiffness and to keep your arm flexible.
  • Have friends and family pitch in around the house. Recovery from mastectomy can take time. Ask friends and family to help with meals, laundry, shopping, and childcare. As your body heals, don’t feel you should take on more than you can handle. (1)

If there is any positive that can come out of breast cancer, it has been the tremendous outpouring of love and support from family and friends. We are eternally grateful to all who have showed us how much they care. I am most humbly grateful to Loraine’s employers, Geri and Larry Martin of Prestige Home Care in Leavenworth, Kansas. This husband and wife team are committed to providing top quality  and compassionate home care to all their clients, and now they have stepped up to help Loraine and I during her recovery. Today, their Operations Supervisor Carolyn Clayton delivered a hearty beef and vegetable stew along with two trays of lasagna which Geri had prepared for us at home in order that we would not have to worry about cooking meals for the next few days of Loraine’s recovery. These are very kind and caring people, if you ever need care for a loved one in or around Leavenworth, Kansas, this is the only home care business I would recommend for the care of your loved one.

Carolyn, we love and cherish your friendship.

God bless and much love to all,

David

(1) https://breastcancer.org

 

No Hill For a Climber, Mastectomy Day

First and foremost, I want to thank God above for Dr. Butler and her surgical team who carried out Loraine’s mastectomy yesterday without any complications. I want to thank God also for giving my dear wife such a brave spirit while facing such a difficult diagnosis as breast cancer. Loraine is quite the trooper, but what else would you expect from a career military spouse. We all know that is the toughest job in the armed forces.

Next, I want to express our sincere gratitude to all the love and support both of us have received. There was plenty of family and friends who came to the hospital for her procedure yesterday, and too many prayers and well wishes by phone calls and social media to adequately address. We love you all!

It would be a humongous understatement if I were to say the last few days have been quite taxing on the nerves. Hell, the last couple months since Loraine’s breast cancer diagnosis have been full of soul eating stress, worrying about the known and unknown factors that come with cancer of any type.  This is her third time and third type of cancer that we have faced down. The stresses that come with a cancer diagnosis when you do not yet have a game plan of exactly how it will be treated is like being on a runaway roller coaster, where the fears can make it difficult to remain focused on what is coming around the next bend, or over the next hill that might very well plunge you head on into the ground below.

Thursday of last week, as a result of a miscommunication or some other factor, we had the fear Loraine’s life saving surgery might have to be postponed for an undetermined period of time. Loraine’s initial breast reconstruction procedure was going to begin as a part of her mastectomy. The plastic surgeon was going to place tissue expander’s under her skin after the removal of her breasts as this normally would be the time to do so, while she was already opened up.

During Loraine’s consultation, neither of us can recall much of a concern being expressed by the doctor about the effect  the tissue expander placements would have on her COPD. Maybe we just missed it, I do not know. Any how, when one has COPD there is a concern that the pressure of tissue expander’s can complicate your breathing, especially once they begin inflating them with saline solution.

The plastic surgeon had sent paperwork to our family doctor to be filled out to clear her for the procedure. Again, as a result of a miscommunication, we were lead to believe her personal physician just needed to sign off on the procedure. Thursday, Loraine found out there was a complication with getting this done. She was told by a staff member that they could not fax the paperwork back to the plastic surgeon’s office. I drove down to find out what the problem was to be informed that Dr. Christiano would need to see her in order to sign off on the procedure. I was told, that all that was needed was a simple blood draw for lab work and an EKG.

Simple enough, right?

I called Loraine and told her to come straight down to Dr. Christiano’s office. The receptionist had her paperwork and said all she had to do was to come in as a walk in and they could do her blood draw and a EKG, the results would be in on time for Loraine’s surgery on Monday morning. We were led to believe that they just needed to do these basic procedures, and she would be on her merry way.

Wrong answer!

Loraine and I arrived at the doctors office and I filled her in on what needed to be done. I sat with her until just before she was called back. I had to go  on the road that night, so I went home to get some much needed sleep. No worries, she would get these last minute requirements done and all would be good. But, that is not what happened at all.

A nurse called Loraine back and from the very beginning of the visit became quite rude with her. With a nastiness to her tone of voice, she informed Loraine that what was ordered on the form was that she needed to see a cardiologist and a pulmonologist to satisfy the plastic surgeons concerns over her COPD. Loraine said that she had no idea and was only doing what the receptionist had told her was required.

How would Loraine know if she had never seen the form and the doctor had not told her? This nurse called in another nurse who was also not the least bit compassionate with her. Loraine told her that she was only doing what the receptionist had told her needed done, and the nurse replied “listening to her was your first mistake”.

At this point Loraine was distraught as there would be no way of seeing these specialists before Monday and it seemed maybe the mastectomy would have to be postponed. She looked at the second nurse feeling dejected and said “I guess my surgery has to be canceled then”. This bitch of a nurse had the audacity to thrust her forms into her face and told her “I guess you will just have to then” and then she sent her on her way home with no blood draws, no EKG nor examination by a doctor. She was sent out the door feeling as if her life had no meaning to these two miserable human beings who disguise themselves as nurse’s. There is more to this story, but I will leave it at these two were mentally abusive to my sweet wife and I am filing a formal complaint to the Kansas Board of Nurses about their abusive behavior.

Friday morning Loraine and both made calls to her nurse navigator Melissa in regards to what had occurred the day before in Dr. Christiano’s office. Loraine and I had talked it over and decided that we wanted the surgery to proceed on Monday as scheduled and she would forego the reconstruction process until a later date. Melissa did her part as liaison between Dr Butler’s office and Dr. Martin. By the afternoon, the dust had settled and surgery was still on for Monday morning at 7:00 A.M. as scheduled.

After a night of restless sleep, we got out of bed at 4:00 A.M. and prepared to head out to the hospital by 5:00 A.M. in order to be on time to check in at 6:00 A.M. We drove to the hospital mostly in silence, but did engage in a little chit chat about life in general. Once we got there, we got her checked in through the admissions desk, and at a little before 7:00 A.M. she was taken back for surgery prep. Shortly thereafter my Dad, our daughter Jennifer and son in-law Terry with our 3 grand daughters arrived as did her brother Howard and her best friend Nicole. I was taken back into the prep room  where we had a private moment together before she was wheeled into surgery. Just before she went back, Jennifer got to come back for a brief visit before surgery.

At 7:30 A.M. Loraine was wheeled into surgery, Jennifer and I returned to the waiting area where our family had occupied one corner to ourselves. We did the usual thing everyone does while waiting on a loved on who is in surgery for something potentially bad. We made small talk, laughed some and essentially avoided the elephant in the room which was the worry each and everyone of us were feeling for our sweet Loraine. Then, at 11:30 A.M. Dr. Butler called my phone from the operating room to inform me the surgery was complete, Loraine had come through it well, but it turns out that postponing the beginning of reconstruction was a good thing after all. There were no surprises in the removal of the right breast which only had a couple of benign lumps. But the cancerous breast was a different story. As Dr. Butler was removing the breast tissue, it was actually falling apart, her breast tissue was disintegrating in the surgeons hands as she was removing it. And then upon examination of the lymph nodes, one was hardened which can only mean the cancer has spread into her lymph system. Hearing this was more than my mind could absorb in the moment. It took my breath away.

How do you comprehend your loving wife’s breast was falling apart during removal?

Hearing the cancer is in her lymph nodes was also one of the things we feared the most.

As Dr. Butler was telling me all of what she had found, I had to get up and leave where the family was sitting. I had to be alone for a moment, I had to regroup, refocus, get my shit together before going back to  tell the family. Once I had told them, the flood gates of my emotions opened and I had a good cry for a moment. I had to get that out of my system before I went back to see Loraine in the recovery room. Thankfully, I did have it out of my system as when I did go back to see her, she kept apologizing  for what she was doing to me. All I could do was reassure her that I still loved her. That because she is the only girl for me, that makes her perfect in my eyes. When you have spent over half your life with a loved one, it takes more than the loss of breasts to make you not still love them. My wife is a strong woman, a resilient woman, she is a trooper at heart As she was climbing further out of the effects of anesthesia, she was starting to cut up and joke as is her nature. Because her recovery stay was going to be in the hospital maternity ward, and children under 13 are not allowed there, the nurses bent the rules a little and we had our 7 year old grand daughter Brianna brought back to the recovery room so Loraine could see her.  This was the only time Brianna was able to see her during her hospital stay.

I had prepared myself for Loraine being in a mental funk after her mastectomy. It is a huge thing for a woman to lose her breasts, a part of of her identity as a woman. But as I have said, she is a very tough woman. They say, the job of being a military spouse is the toughest job in the armed forces. I believe I was fortunate, graced by God above to to be blessed with this strong woman who weathered my military career. This same strength of character was on full display for all to see yesterday as she was recovering overnight in the hospital. She interacted with her visitors all afternoon, while also taking numerous phone calls and answering text messages of well wishes from loved one, family and friends. Her high spirits made it hard to believe she had just underwent this major surgical procedure. Even with the discomfort of having her breasts removed, she still had an appetite and had been craving spaghetti all day. I ordered spaghetti with marinara with olives and mushrooms along with a side order of fried mozzarella cheese sticks from Minski’s Pizza. Minski’s is one of the best pizzeria’s in the Kansas City area. She loved this dinner and ate almost the entire meal with the exception of a few of the cheese sticks.

Last night was a rather sleepless night for both of us, but for different reasons. I slept on a uncomfortable couch in the room beside a window where you cold feel the winter cold emanating in from without. I just had a difficult time with comfort. Loraine on the other hand kept having to get up to urinate. She had been on a IV saline drip all day and was told that if she drank enough water and urinated enough, they could remove the IV. I’m pretty sure she did not need to double down on this challenge. The night nurse removed her IV and after that, it seemed she was getting up about every 30 to 45 minutes. And then, at about 2:30 A.M., she was on a video call with our youngest daughter Molly in Munich Germany. I just rolled back over and attempted to get back to sleep.

Loraine was discharged from the hospital today at about 1:00 P.M. Dr. Butler came in to visit us this morning, and to see how Loraine was doing. While there, she examined the incisions and drain tubes she had inserted and then proceeded to tell us both what she had found. There was nothing said, that she had not told me already, but she did have the time to answer our questions. The first was to affirm that now radiation and or chemotherapy treatments are on the table. We will know the course of action for sure once the pathology reports are complete next week. My other big question was in regards to the breast tissue falling apart. We will not know for sure if this is a result of the cancer, or simply because of her age and the fact she had been a smoker for several years up until 5 years ago. Never the less, we now have a better idea of what we are facing. There is something tangible that we can now begin planning our lives around now.  While none of this is good, it is now easier and less stressful than the last month or so has been where everything was still an unknown entity in the severity of the cancer. Now at least we have a better idea.

The nurse navigator came in a little afterwards and not only went over her discharge instructions, but she taught us both how to drain her four drainage tubes and went over what to do if they get clogged due to clotting blood. It is a pretty simple procedure, you have a squeeze tube where the blood and fluid collects which has to be periodically emptied and the contents must be measured and annotated on a log sheet with the date and time of the draining. It might be a good thing I am not squeamish.

Neither Loraine or myself had ever heard of having a nurse navigator for anything. Nurse Melissa is assigned to Loraine for the duration of her journey with breast cancer. Maybe this is something only provided by the St. Luke’s medical community, I do not know. It would be a beautiful thing if every woman who has had this diagnosis had a navigator to walk her through the long process to wellness. Melissa is an angel, she has been so helpful already, and today she not only  arrived with discharge instructions, she came with a small pillow and pretty bags for Loraine to carry her drainage reservoirs in along with a pretty hand knitted lap afghan her mother had made. Melissa told us that her mother is a breast cancer survivor and that she knits these little lap afghans for every patient that Melissa has under her care. This personal touch leaves us almost speechless. It is more than obvious Melissa is a nurse for all the right reasons. The compassion from this woman is far above and beyond her job requirements and we are most fortunate to have her in this difficult journey. She has answered all of our calls in a timely manner, and has kept to everything she has told us. This kind woman is a true godsend.

We have had a great deal of stress since Loraine’s diagnosis. We have had questions that cannot be answered yet, and we are keenly aware that there are going to be more trying times that we may have little to no control over. My good friend Robert had a talk with me the other night which helped me to regain my focus on what is important and that also made me refer back to a prayer that has carried me through most of my adult life. That prayer is the Serenity Prayer, you may have seen me refer to it on other articles I have authored. This prayer is as follows:

Lord, grant me the Serenity to accept that which I cannot change.

Give me the Courage to change that which I can.

Bless me with the Wisdom to know the difference.

No Hill For a Climber, Lymphedema Prevention

Today is the beginning of a new year and decade. There will be many triumphs and defeats we will encounter while traversing the twisted and crooked path of life. Some of our battles are entirely within our control, and some are not. It is how we deal with these struggles and hard won fights that define our character, not that they occurred in the first place. Every time we get knocked down by life, it is imperative that we jump back up onto our feet in order to continue our fight.

This has been an interesting week, and an emotionally trying week on many levels for my dear Loraine and I both.

Over the weekend, I connected with a cousin I have never known, despite the fact we both have a great grandmother in common. All of my life, it was common knowledge in the family that my great grandmother Mattie May Turner was part Native American of Cherokee descent. My grandmother believed her mother was part Cherokee all of her life too. Yet, my mother had a DNA test completed a couple years ago which showed zero Native American blood, but did show a percentage of African blood. We have surmised that Great Grandma Turner was actually part black despite her fair skin. Two of her little girls were pretty dark, as are many of her grand children and great grand children. We figure that having come from the south to Missouri, which had been a slave state, life was easier to claim being “Indian” over having even a trace of “black” blood in her. It made me sad to think this dear sweet great grandmother of mine, who passed when I was seventeen years old, had to hide who and what she was in order to fit in with her small community. I can guarantee, if it had ever come out that Mattie Turner was part black in her small town, she would have never even been made to feel welcome in her own church. I was happy to solve the mystery of her ethnicity, yet saddened to think of what life had to be like in order for her to be accepted into her community.

This year as in years past, I made no New Years resolutions. What I have done is to just affirm that I will continue to try to treat others with kindness and to continue with my own self care during this trying time in our lives with Loraine’s breast cancer and her brother Howard’s liver cancer. (Howard has been living with us for almost a year now since he became disabled from his cancer.)

Monday as I was preparing to head out to the Veterans Administration (VA) for my Post Traumatic Stress Therapy, I read an article that got me actually quite upset. I am a retired military man of Navy and Army service to my country. At the young age of nineteen, I was given the drug Mefloquine for the prevention of malaria. This course of drugs ran for eight weeks prior to our arrival in Mombasa Kenya, and then we had another eight week course of Mefloquine after we had left. After receiving this anti-malarial drug, we were not able to donate blood for ten years afterwards, that should say something about how bad it is. But here is what I learned about Mefloquine on Monday morning:

Military authors have noted that that “the significant overlap in symptoms associated with mefloquine toxicity and post traumatic stress disorder (PTSD) obscures the distinction between these diagnoses,” and that mefloquine use may “confound the diagnosis and management” of PTSD. Consistent with such confounding, a recent study finds that non-combat-deployed personnel with mefloquine exposure had a significant and nearly doubled risk of subsequent PTSD diagnosis, as compared to those who lacked such exposure.

As mefloquine exposure is correlated with deployment, and as mefloquine exposure provides a separate causal pathway for many outcome variables associated with sleep disorders, unmeasured mefloquine exposure may serve as a potentially critical confounder in studies of sleep disorders among deployed military personnel and veterans. Unmeasured mefloquine exposure has been previously identified as a significant concern in the interpretation of recent military studies of PTSD and emergence delirium. Owing to the potential for confounding, researchers conducting studies of sleep disorders among veterans should measure prior symptomatic exposure and control for its effects in future analysis. (1)

From Military Times:

Case reports of mefloquine side effects have been published before, but the authors of  “Prolonged Neuropsychiatric Symptoms in a Military Service Member Exposed to Mefloquine” say their example is unusual because it shows that symptoms can last years after a person stops taking the drug.

And since the symptoms are so similar to PTSD, the researchers add, they serve to “confound the diagnosis” of either condition.

“It demonstrates the difficulty in distinguishing from possible mefloquine-induced toxicity versus PTSD and raises some questions regarding possible linkages between the two diagnoses,” wrote Army Maj. Jeffrey Livezey, chief of clinical pharmacology at the Walter Reed Army Institute of Research, Silver Spring, Maryland. 

Once the U.S. military’s malaria prophylactic of choice, favored for its once-a-week dosage regimen, mefloquine was designated the drug of last resort in 2013 by the Defense Department after the Food and Drug Administration slapped a boxed warning on its label, noting it can cause permanent psychiatric and neurological side effects. (2)

The good news is this explains a lot for me. It gives a solid foundation to my PTSD, insomnia, anxiety and depression which can be overwhelming at times. After thirty plus years of suffering mostly in silence, I sought help in this. I am particularly disturbed that part of my suffering could very well be a direct result of brain damage caused by Mefloquine. I may never get completely over my issues, yet I have pledged to continue my lifestyle of healthy nutrition and physical fitness, as well, I will continue my Cognitive Therapy for PTSD as long as it takes to maybe rewire how my brain operates.

The important take away is that if I am to be able to care for my sweet wife and Howard during their struggles with cancer, I must continue with my own self care. As a care taker, it is imperative that one still takes care of themselves, or you will soon burnout and possibly become sick too.

Lymphedema Prevention

Now that I have lead you down a twisted path through a forest to show you a tree, I will get on with Loraine’s visit with her physical therapist on Thursday. I felt it necessary first to set the stage for what life is in my home.

Loraine had an appointment with her physical therapist for 7:00 am Thursday morning. Being as we both thought the sole purpose of this visit was to have her fitted for special sleeves to prevent lymphedema after her double mastectomy this coming Monday morning, the visit did not appear to be important enough for me to take the night off from the road in my semi to be there.

We were both wrong, I should have been there as she received a lot of information that I needed to hear too.

Did I ever say in any of these articles that the abundance of information regarding breast cancer treatment will make your head want to pop like a grape?

Many  family and friends with the best of intentions keep talking like this breast cancer and mastectomy are not that a big of deal since treatments have become so successful over the years in regards to breast cancer.

I get it. They are trying to be helpful and encouraging. I appreciate this.

However, this is a monumental ordeal for us in the moment. This upcoming mastectomy is a very intrusive and disfiguring surgery. This is not a simple matter of just removing two breast and then following up with a few treatments.

Try as we may to remain optimistic about what the future holds, right not we have the stress of not knowing just how bad this cancer might be. We will not know until after her surgery on Monday. This unknown factor leads to a huge stress. And then, as if the removal of two breasts and a few lymph nodes is not enough, there will be the lingering possibility of lymphedema occurring in one or both of Loraine’s arms for the rest of her life. And this is not even taking into consideration breast reconstruction procedures to follow.

Loraine was fitted for her compression sleeves yesterday, and then they went over exercises and other things she will need to do in order to prevent lymphedema from occurring. For any of you who are not familiar with lymphedema and the prevention of it here is the information the therapist sent home with Loraine:

What is Lymphedema, and how can I prevent it?

Lymphedema is a type of swelling that occurs because lymph vessels and lymph nodes are unable to drain fluid successfully. This causes a back up of fluid, old proteins, and old cell particles that can build up over time and make the skin and tissues below it harden and become unhealthy, The swelling can range from a mild case which is not noticeable to being severe, affecting how clothes fit or how a person moves and functions. There is no cure, but steps can be taken to reduce the risk of getting lymphedema or allowing it to get worse.

Lymphedema in the left arm

Although there is no strong scientific proof that these tips prevent swelling, an understanding of how the body is structured and its systems work can help people understand the risks, signs and  symptoms so they can get help sooner and have a better chance of controlling or even reversing lymphedema.

Besides noticing that a body part such as an arm or leg looks or feels bigger, or jewelry or clothing does not fit, early signs can be a feeling that the arm or leg is:

Heavy, Achy

Tired,Tingly

If you feel any of these symptoms:

Stop what you are doing and rest.  Lay down and/or prop up the arm or leg on a pillow. Drink water to help move the fluid.

If these symptoms do not go away or happen often, contact your doctor and ask to see a lymphedema therapist.

Steps you can take to avoid lymphedema or keep it from getting worse include:

  1. Good skin care-Avoid injury and situations that might cause an infection.
    • Keep skin clean and dry and check every day for any cuts, scrapes, or other injuries.
    • Wash injured skin with soap and water and apply antibiotic cream like Polysporin.
    • Watch for signs of infection:
      1. Skin that is red and blotchy.
      2. Skin that is hot to the touch.
      3. Fever, chills, nausea, vomiting or flu like symptoms.
      4. Pain
    • Keep nails trimmed but do not cut cuticles, bite nails, or allow hangnails.
    • Wear gloves, long sleeves, or long pants while doing activities that could break the skin like gardening, using chemicals, washing dishes, or working with tools.
    • Avoid needle sticks, IVs and shots in the arm or leg that is at risk.
    • Use sunscreen and insect repellent to prevent sunburn and bites.
    • Avoid animal scratches and bites.
    • Use soap or shaving gel when using a razor and do not cut the skin.
    • Avoid blunt trauma or bruising.
  2. Keep an active lifestyle without overdoing it.
    • Slowly build the level and length of any activity or exercise.
    • Keep in mind that regular everyday activities (such as raking, moving boxes, carrying heavy laundry) can be as stressful to the body as heavy exercise.
    • Take rest breaks often.
    • Wear your bandage or compression garment when exercising.
    • Pay attention to any changes in the shape, texture, heaviness, firmness, soreness, or size of the arm or leg.
    • Keep a healthy weight. Obesity is a major risk factor for lymphedema.
  3. Avoid temperatures that are too hot or cold.
    • Avoid extreme cold.
    • Stay out of the heat (limit to 15 minutes); do not use saunas or hot tubs.
    • Be careful with hot packs and heating pads which are hot enough to turn the skin red over the arm of leg which is at risk for lymphedema.
  4. Avoid anything that squeezes or causes pressure.
    • If possible, have your blood pressure taken from the arm that is not at risk.
    • Avoid wearing tight bra straps, watches, rings or waist bands.
    • Avoid carrying a heavy bag or purse over the at risk or swollen arm or shoulder.
  5. Compression garments.
    • It is important to have compression garments that fit properly and give the right amount of pressure. If the garment is not right for you, it can hurt more than it helps.
    • Your therapist may recommend wearing a compression garment on an at risk arm or leg to give support during certain situations such as:
      1. Demanding activities like weight lifting, yard work, certain household jobs, standing for long periods and running.
      2. Traveling in an airplane. 

This, to me, is a lot on top of everything else. Like pouring salt into a bloody wound. Hopefully the edema will never become an issue. Maybe at some point we might be able to also minimize some of the issues which come with breast cancer too. But for now, it makes our heads swim with emotion, anxiety and fears of the known and unknown factors that could come into play with this awful disease.

 

(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040794/

(2) https://www.militarytimes.com/news/your-military/2016/08/11/malaria-drug-causes-brain-damage-that-mimics-ptsd-case-study/