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

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.

 

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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/

No Hill For a Climber, Breast Reconstruction Consult

Wouldn’t it just be a wonderful gesture if when the world is crashing down all around us, we could just stop it from spinning long enough for us to hop off for a moment to regroup our thoughts and emotions? It would be quite a generous gift from society too, if all of our bills and debts payments could be forgiven for the duration of a loved ones illness. This might happen if we lived in a perfect world, but a perfect world only exists in the imagination of children and those who are out of touch with reality.

The world is not going to stop for us.

It never has, it never will…

No matter how critically ill you or your loved one might be, the bills keep coming in regardless of your ability to pay them along with your rising medical and prescription medicine expenses. Your utility providers do not give a damn about your family struggles with critically ill health. The bank who has financed your home and automobiles could not give a shit either. These institutions will only let you miss a couple payments before they begin mailing you foreclosure warnings while your pleas for continued leniency falls on deaf ears. Miss a few payments and they will come take your transportation and the roof over your head.

Therefore, no matter that we have a loved who might need us at home, we still must report to work and do the best we can to keep our bills paid during a critical illness. We must do this while also still being able to be lovingly attentive and properly care for our loved ones.

And you had better not take too much time off from work in order to care for your loved ones as your employer too will only show you just as much compassion as policy might dictate.

Fortunately, Loraine’s diagnosis is pretty recent, therefore we have not yet encountered any financial difficulties from her breast cancer. However, we have taken in her brother Howard almost a year ago who is suffering from cancer as a result of also suffering from Hepatitis C. Compounding his problems to another level is he has also developed cirrhosis of the liver. This good man has worked hard all of his life, yet because of his illness, he is now fully disabled. We have a full plate and are doing the best we can to care for him, and now, I find myself with two loved ones in my home suffering from cancer.

If we can’t get the world to stop momentarily, could we at least get it to slow down momentarily while I catch my breath?

Wednesday night, it did not matter that I wanted to, actually needed to remain home. Because of a demanding work schedule I had to go on the road for the night in my semi to deliver construction and industrial supplies for my employer. As I tucked Loraine into bed, told her that I love her, and then kissed her goodnight, I reassured her I would be home in time for her appointment. I slipped downstairs grabbed my road gear and said a prayer that nothing would cause me any delays in getting back to our hub in the morning. I desperately needed to be back in time to be able to clean up and catch a quick power nap before getting Loraine to her 1:00 pm appointment with the plastic surgeon who will be doing her breast reconstruction.

Reconstruction procedures will be started immediately after her breasts have been removed on January 6th.

When you have been married to your soul mate as long as I have been, you find that you are totally in tune to your loved one, even from great distances. While out on the road, about 4:00 am, I got a vibe that Loraine was up and needing me. Say what you want about cell phones being a distraction from relationships, they also keep us connected when apart. I picked up my smart phone and through the magic of technology I was able to see that Loraine was online.  I called her and we chatted for a while before she was able to get back to sleep. We talked about how nervous we both were about the doctors visit later in the day and we also just made a little small talk to distract our minds from the unknown outcome of our consultation with her plastic surgeon.

I left my hub with 535 miles to run and 29,000 pounds of freight to unload myself. No big deal when all goes right, but you never know when your truck might have a flat tire or a mechanical breakdown. You never know when a state Depart of Transportation might pull you over for a random inspection either. My prayers were answered, I returned to my hub with no unnecessary delays Thursday morning.

Loraine and I left our house in Leavenworth at noon, and drove the twenty five miles or so to St Luke’s on the Plaza for her appointment. Not knowing for sure where I was going, I rushed to get there in order to not be late. The Plaza area of Kansas City, Missouri has had a tremendous amount of growth and construction since the last time I had ventured down there and traffic can be off the hook crazy, especially now with all the Christmas shoppers hurrying about their business. Thankfully, we did get there on time, and I must have looked like a total rube when I pulled up for valet parking outside of the valet lane. I backed up to pull in where I should have and managed to run over their valet parking sign in the process. You might not have ever guessed that I am a professional driver…

We did arrive in time for Loraine’s appointment, yet we still had to nervously wait a while before she was called back by the nurse. Once we were back in the examination room, the nurse instructed Loraine to remove her blouse and bra and to don an examination smock, opening in the front, and then she left the room. Loraine and I made a little small talk, coming up with questions to ask the doctor. As much as I thought we were prepared with good questions to ask him,  my mind began drawing blanks. I’m pretty sure Loraine’s did too. There was so much vital information to absorb, too much for a mind that was already fully saturated with fear, hope, dread, and a numbness that comes from overthinking possible outcomes.

Thankfully Dr. Martin is experienced enough to anticipate all of our fears and concerns. We asked a couple questions first, and then he essentially shut us down from asking more. I at first thought this was pretty damn rude, but kept my peace. And I am so glad I did as he gave us a very detailed plan of action for a choice of three possible reconstruction procedures once he had examined Loraine’s breasts by taking measurements from top to bottom, under and across. He informed us that because the tumor had retracted her left nipple in too far, that saving her nipples and areola were not possible. Here are the procedural choices we are looking at:

The plastic surgeon will step in once all of Loraine’s breast tissue has been removed. At this time, he will insert tissue expander’s either directly under her flesh, or under her pectoral muscles of the chest. Placement is going to all be dependent on how thick or thin her remaining breast skin might be, and the blood supply to this tissue. He will not be able to decide the placement until he has seen exactly what he has to work with.

Note: it only makes sense that this is the best time to do this procedure as she will already be opened up for it.

Once he has put the tissue expander’s in place, he will close her back up, and we will be through with any further procedures until Loraine has healed enough, or, not until after six months have passed after the completion of radiation and or chemo treatments should they be necessary.

At the point in time where saline solution can be injected into the tissue expander’s in order to create a pocket for an implant, Loraine has the choice of just having them removed. She can forego reconstruction altogether should she not like the feel of a foreign object in her body. Some women find them to be uncomfortable.

The good thing about having to wait, is it will giver her time to honestly evaluate the pro’s and con’s of breast reconstruction. This will also give us time to do further research regarding reconstruction procedures. Should she decide to forego reconstruction, the tissue expander’s can be removed at the surgeons office under a local anesthesia. Or, he can begin the expansion process over the course of a few office visits before actually placing permanent implants.

Once her new new breast tissue has been expanded sufficiently to accept implants, Loraine will have three choices of procedures:

  • Saline Implants. The pro of saline is that if an implant were to leak, the sterile saline inside would be simply absorbed by her body. If a saline implant leaks, the breast will go flat. The con is, saline implants typically do not look or feel as real as silicone implants.
  • Silicone Implants. Pro’s, silicone implants look and feel more realistic. Yet, are known to cause health issues in women should the silicone ever leak out. Leakage is only detectable by MRI according to Dr. Martin.
  • DIEP.  A DIEP flap is a type of breast reconstruction in which blood vessels called  deep inferior epigastric perforators as well as the skin and fat connected to them, are removed from the lower abdomen  and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles. In a nutshell, the surgeon will remove a sizable piece of football shaped flesh and fat from Loraine’s stomach, cut this in half, and then stitch the left and right sides to Loraine’s chest. Once this procedure has healed, she would then return for liposuction of more fat from the sides of her abdomen which would then be injected into her new breasts in order to shape and contour them. The pro’s to this procedure is her own flesh would be utilized and there would be no foreign objects in her body which could possibly leak their contents. The cons is the procedure will be more painful, and will require a three day stay in an intensive care unit (ICU) for three days of around the clock care of the incisions each and every hour. And then there will be the liposuction and fat injection  procedures to follow. Should Loraine have to undergo radiation and chemo treatments, this is a tremendous step to take. I honestly do not want her to suffer this much in addition to the pain and indignities she will already be suffering.

Regardless of the procedure Loraine goes with, the creation of nipples and areola will be the final step, and this might take up to two years to get to.

No matter what my dear wife, my soul mate, my best friend in life decides, I will stand by her in loving support. Should she decide to not undergo reconstruction at all, I will stand by her. Almost thirty four years of love and compassion is far deeper than a pair of breasts could ever be. My main and only concern for this wonderful woman, my bride whom I committed my life to, is that she gets through this with a full cure and that we have many more healthy years together. We will do this together.

No Hill For a Climber, Being Supportive

Almost 34 years ago, I was out riding my 1964 Harley Davidson Sportser when I ran into my old buddy Howard and his sister. The same sister who a few days previously would not give me the time of day when I had tried to speak with her while she was tanning out in front of her mothers home with a friend when I had stopped by. I guess she thought I was some kind of wild man or something. But anyhow, on this day, once Loraine knew that Howard and I were friends she asked Howard if she could have a ride on my Harley. I said to her, “It is my bike, you should be asking me”.

She then asked me if she could have a ride, and me being me, how could I possibly deny this hot chick. I told her to climb on and we have been an item ever since. We used to have so much fun on that old Harley, we loved hitting twisty roads and every so often I would hear her piping up from behind me imploring me to “ride a wheelie”. We were young and carefree, living life to the fullest. About seven months later, I made this beautiful woman my wife and became Dad to her two small children Michael and Jennifer.

Loraine and I have had a good life together, although not always an easy one. We were married September 20th 1986, our baby girl Molly was born April 20, 1987, and I returned to the Navy in May of 1987.

We had a little Datsun B210 that we packed as full as we could with clothing and other personal items and set off for San Diego to my new duty station at Naval Air Station Miramar. That cross country trip was quite the adventure. The kids were crammed in the back, while our baby Molly rode in Loraine’s lap. That little Datsun was a dependable vehicle, but as soon as we arrived in San Diego, Loraine insisted we were going to get her a bigger car, she was never going to be that cramped in a car ever again. We went out and bought her a 1984 Oldsmobile Cutlass that day.

Being a military wife is a very tough job, they say it is the toughest job in the armed forces. After four years in Miramar, we were transferred to Naval Air Station Norfolk, Virginia where we would spend the next five years before being transferred once again to Dallas, Texas where we were for the next two years before I left the Navy.

Navy life was tough on Loraine and the kids. Not only did she have to deal with our being transferred a few times. She had to cope with the problems that would arise with the kids having to leave their friends behind. Of course, most of their friends were also military brats, so they were constantly moving away too. And then there was all my time spent away from home when she would have to take on the role of Mom and Dad while I was gone. My duties were quite demanding to say the least. Even when I was not gone on a detachment, I would work eighty to one hundred hour work weeks. At Helicopter Combat Support Special Squadron 4 (HCS-) in Virginia, I was on a seventy two hour contingency to deploy anywhere in the world in support of Navy Special Warfare operations. I was in a Navy helicopter special operations command with a mission of Combat Search and Rescue along with Special Warfare support of SEAL teams out of Dam Neck, Virginia. This was an exciting tour of duty, but it was terribly rough on our families who never knew when or if we would be called away. We seemed to always be away…

Military life was pretty hard on my family. May of 1997, I left the Navy involuntarily. I’m not getting into all the details about that, but will say I had issues that were coming from what has now been diagnosed  as severe Post Traumatic Stress Disorder. I had a bad time readjusting to civilian life for several years, and in 2008, I returned to military service in the Kansas Army Reserve National Guard as a Staff Sergeant. I re-enlisted one day without talking to my family about it. I went home and asked Loraine what she would think if I told her I could get back into the military. She looked at me and said, “You already re-enlisted didn’t you”. She knew how important it was to me to finish my career and gave me her full support despite there was full likelihood I would either deploy to Iraq or Afghanistan for combat operations at the age of 46 years old. In fact, I was about to deploy with my unit to Afghanistan when I blew out my spine at L5 S1 in an accident at my civilian job. This injury resulted in me being off of full time work for a year, required epidural injections into my spine, spinal surgery followed by two months of physical therapy. It took me a year to learn to walk normal again after this injury, along with kicking an opiate addiction that came from my prolonged use of prescription oxycodone. I retired for medical reasons October 2010.

This article is not supposed to be about me though. I hope to have set the stage where you can see how tough life has been on my dear wife while being so very supportive of me in all of my endeavors. She has stepped up to the plate and been the best wife a man could ever ask for. She has supported me through my military career no matter how hectic life could be for her and the kids at home. She has supported me through the craziness of my PTSD. She carried the torch when I blew out my spine and kept us afloat when others might have left me when I could not support my family as a result of this painful injury. She has supported me through her two other bouts of cancer, one when the needs of the Navy often came before the needs of my family. Now, with her third go round with cancer, this time breast cancer, I will do everything in my power to be every bit of the support she needs out of me.

No matter what she decides about her treatments with this breast cancer, I will stand by her decisions. Right now, Loraine has decided to go through with a full mastectomy of both breasts and then undergo reconstruction during the same surgical procedure. She has my support.

If she changes her mind about reconstruction and just goes with a full mastectomy, she still has my undying support.

Should she change her mind and decide to go with just a lumpectomy procedure which will for sure require radiation and possibly chemo, she has my support.

No matter what she decides with this breast cancer, I will stand strong at her side and support her in her decisions. It is her body that is being affected. She has to live with this, I will support her. It is her mind that has to get wrapped around a full mastectomy, I will be there for her.

If you have a loved one going through any type of cancer, it is a true act of selfless love to be there for their emotional support. This battle is likely to get hard, but we will prevail. Of this, I have faith. God bless and thank you for reading.