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/

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