I have been quiet recently, but I have been that way with everyone, not just the wonderful people who follow my blog. I emailed my family updating them on how I was doing, and my cousin said he was just about to ask me. I wrote back, and I told both he and my other family members the following, and I think this explains it as best as I can.
“It is hard to explain, but when I am having the difficulties I was having, and still am, with trying to recover from the treatments, it is hard to write about it. Everything with cancer is physical and mental, and at times, the mental is the most challenging part to deal with. When I got to my last three radiation treatments, I was in tears and telling my husband that “I didn’t want to do this anymore.” I went through the same thing when I got to number 12 of 16 chemotherapy infusions. It is so hard to see what the meds, treatments, infusions, etc…are doing to your body, yet you have little to no way of controlling anything. Sure, you can fight the side effects, but that is generally done with more medication, and sometimes, that’s the last thing I want.”
So, I have been working on recovering from 10 potent radiation treatments, and it has not been easy. This coming Wednesday will be three weeks since I had my last treatment. My radiation oncologist said that the radiation would continue to work for three weeks after treatment ends, so I hope to start feeling better later this week.
About halfway through my treatments, I started dealing with very severe fatigue. Even the simplest tasks would tire me, so I had to rest as much as possible. I asked one of the techs one day if my radiation dose was more potent than what I had in 2019, and she confirmed that it was. Generally, when you have 10 treatments vs. 25, the amount is more concentrated so that there are fewer treatments, two weeks vs. five weeks.
Along with the fatigue, I had some painful side effects. My whole body started hurting all of the time, and sometimes Extra Strength Tylenol was strong enough to ease the pain, and sometimes it was not. When it wasn’t strong enough, I had to break into my hoard of oxycodone I had left over from my surgeries, which seemed to help. I was also getting headaches, I was dizzy at times, and worst of all, I had pain when I ate.
My treatment was done from the front to the back, meaning that even though my tumor is on the 8th rib in my back, I was lying on my back for treatment. My tumor is also about one inch from my spine, so that is a big reason why I didn’t have surgery. I didn’t think about the tumor’s location with other body parts because I just wanted the tumor to die.
My radiation oncologist told me that I might have pain when eating but that it would start towards the end of treatment and should stop pretty quickly once treatment was over. I asked her why, and she said my esophagus was close to the treatment area. I hadn’t thought about anything like that, so I was shocked. Sure enough, on the weekend before my last three treatments, I started having pain when eating. At first, it wasn’t too bad, but by the time I reached my last day of treatment, it was excruciating.
On the last Monday of my treatment, I had an appointment with my medical oncologist before my radiation treatment. He asked me many questions about how I was doing with the treatment and my side effects. He is an entirely different type of oncologist, so he is always curious to know how patients tolerate other types of treatment. When I explained my pain when I ate, he immediately asked me if I wanted to have him prescribe oxycodone. I have often read about patients needing pain medication and being denied because there is such a massive issue with addiction. I didn’t think for a second that my oncologist would tell me no because he knew that oxycodone scared me. So I now have more of that medication than I need because he always prescribes 90 pills, but it is helping me with the pain I have when I eat, and so far, just one a day has been enough.
On June 1st, I have a follow-up appointment with my radiation oncologist. She will chat with me to ensure I have no issues with my recovery. When I was discharged from my treatment, she told me it would take 3 to 6 weeks to recover from the radiation treatments. When I see her for my appointment, I will be at five weeks since my last treatment and hopefully feeling much better.
First, I want to let you know that I do not have any pain in the area where I have my radiation treatments. A lot of people assume that I have pain during and or after treatment and I do not. I do not have any burns or irritated skin either. According to my radiation oncologist I should not experience any of the above.
I received my schedule on Thursday when I went in for my first treatment and the final part of the SIMs appointment. My doctor had told me 10 to 14 treatments, so I was happy that she decided on 10. So my first treatment was a few days ago on Thursday, and my last treatment will be on April 26th. I go in every weekday, Monday through Friday, with weekends off.
Thursday was rough. It was a longer appointment because they had to x-ray me and finish plotting for the coordinates to set the machine for my treatments. I had to have both arms up over my head for that whole process which was almost an hour. By the time they were done, I was crying because the pain was so bad in my left arm. It felt like my arm was being ripped out of the socket. I tried so hard not to cry, but the pain was unbearable. I was so embarrassed, and I apologized to the techs; they were very kind and stayed with me and rubbed my back to try to get me to calm down. I don’t remember it hurting that much when I went through the same process in 2019, so I was shocked that the pain was that bad. Luckily the pain didn’t last long and went away about an hour after I got home.
On Friday, my arm hurt again because it went through so much on Thursday. It seems like they are taking longer to get everything set up once I am on the table. They are not only setting the machine for my coordinates, but they are also moving me around so the markers on my body line up as well. Luckily with all of the plotting out of the way, I only have my treatment when I go in now, nothing extra from here on out except a visit with my doctor each Monday.
I’m sure when I return on Monday for treatment #3, I won’t have any more issues with pain. I will try to keep my movement as limited as I can in my left arm over the weekend. The excessive pain I am experiencing is only in my left arm and that is because I had 18 lymph nodes removed from under my left arm during my cancer removal surgery in April 2019. I realize that it has been four years since that surgery but when there are that many lymph nodes removed there are multiple nerves that are cut and disconnected, so at least in my case, I have never regained full mobility and I am still numb in the upper part of my arm over to half of my breast. I have learned to live with the numbness over the years. I can feel pressure but that is all, so it took awhile for me to be able to find the right pressure to shave under my arm and not cut myself. In my opinion it is a small price to pay for my surgeon saving my life and me being alive today.
As always, thank you for being here and supporting me. 💕
When I saw my regular doctor last Wednesday, we had some time to sit and chat, which was nice. This doctor prescribes my diabetes meds and keeps track of my general health. Today he took some blood to check my A1c and to run a panel for cholesterol, liver, kidneys, etc., things that my oncologist doesn’t look at every month.
We discussed my fatigue and depression, and he suggested I get B12 shots. He told me to look it up online when I got home, and if it is something that I want to do, to call my oncologist and ask if I can have B12 shots while on iBrance and Faslodex. I have been suffering for months, so I am willing to try anything to feel better and not so disconnected from myself.
There is an overwhelming amount of information about B12 online. Some of the data is favorable, and some is not, depending on your general health and reason for taking B12. My doctor has had very positive results with his patients who are suffering from both fatigue and depression like I am. B12 shots will not interfere with iBrance or Faslodex, so I decided to go ahead and try them, hoping to improve my overall well-being. Today I had my first shot, and I will have four more over the next month.
A healthy intake of B-12, whether in a normal diet, through a supplement, or via injection, can help a cancer patient recover. It can also help reduce the risk of cancers in healthy people. In most cases, the body only absorbs the amount of B-12 it needs and naturally discards the rest.
I will keep you updated on my results over the next few weeks.
I had my second PET scan on Friday since starting iBrance and Faslodex. I wasn’t nervous about the scan; that part is relatively easy; it’s the uncertainty and having to wait to see my oncologist for the results that is the most difficult part. I also deal with pain during my scan because ever since my first surgery in April 2019, I have had pain when raising my arms over my head, which can become very uncomfortable when I have to stay still in that position for more than a few minutes.
Unfortunately, PET Scans are not as quick and easy as getting X-rays. From checking in to registering, going through the scan process to leaving, I was there for 3 hours. I go alone to the appointments because my husband can’t go back with me while I am being scanned, so it doesn’t make sense for him to be there. He goes with me to my oncologist appointment after my scan, so he will be with me when I get my results. I never know what to expect, so it is comforting to have him with me, no matter what the results turn out to be.
Until I faced breast cancer in 2019, I had never had surgery, a biopsy, a CT Scan, a Bone Scan – Nuclear Medicine, or a PET Scan. I have learned so much in the last three years and eight months about things I wish I had never had to experience. I share as much information as I can with my readers because I want you to not only understand what I have been through and what I am going through now as a stage 4 metastatic breast cancer patient but also to help those who are going through the same journey. It is terrifying when you don’t know what to expect, and you are overwhelmed with information. I try to make it a little easier for those interested in getting the information needed to help themselves through whatever they may be facing or helping a friend or loved one through a difficult time.
What is a PET Scan?
A positron emission tomography (PET) scan is an imaging test that can help reveal the metabolic or biochemical function of your tissues and organs. The PET scan uses a radioactive drug (tracer) to show both normal and abnormal metabolic activity. A PET scan can often detect the abnormal metabolism of the tracer in diseases before the disease shows up on other imaging tests, such as computerized tomography (CT) and magnetic resonance imaging (MRI).
The tracer is most often injected into a vein within your hand or arm. The tracer will then collect into areas of your body that have higher levels of metabolic or biochemical activity, which often pinpoints the location of the disease.
Why it’s done
A PET scan is an effective way to help identify a variety of conditions, including cancer, heart disease and brain disorders. Your doctor can use this information to help diagnose, monitor or treat your condition.
Cancer
Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells. PET scans may be useful in:
Detecting cancer
Revealing whether your cancer has spread
Checking whether a cancer treatment is working
Finding a cancer recurrence
PET scans must be interpreted carefully because noncancerous conditions can look like cancer, and some cancers do not appear on PET scans. Many types of solid tumors can be detected by PET-CT and PET-MRI scans, including:
Brain
Breast
Cervical
Colorectal
Esophageal
Head and neck
Lung
Lymphatic system
Pancreatic
Prostate
Skin
Thyroid
Heart disease
PET scans can reveal areas of decreased blood flow in the heart. This information can help you and your doctor decide, for example, whether you might benefit from a procedure to open clogged heart arteries (angioplasty) or coronary artery bypass surgery.
Brain disorders
PET scans can be used to evaluate certain brain disorders, such as tumors, Alzheimer’s disease and seizures.
Risks
For your PET scan, a radioactive drug (tracer) will be injected into a vein. Because the amount of radiation you’re exposed to in the tracer is small, the risk of negative effects from the radiation is low. But the tracer might:
Expose your unborn baby to radiation if you are pregnant
Expose your child to radiation if you are breastfeeding
Cause an allergic reaction, although this is rare
Talk with your doctor about the benefits and risks of a PET scan.
How you prepare
Tell your doctor:
If you’ve ever had a bad allergic reaction
If you’ve been sick recently or you have another medical condition, such as diabetes
If you’re taking any medications, vitamins or herbal supplements
If you’re pregnant or you think you might be pregnant
If you’re breastfeeding
If you’re afraid of enclosed spaces (claustrophobic)
Your doctor will give you detailed instructions on how to prepare for your scan. A general rule is to avoid strenuous exercise for a couple of days before the scan and to only drink water after midnight before the day of the scan.
What you can expect
The PET-CT or PET-MRI scanner is a large machine that looks a little like a giant doughnut standing upright, similar to CT or MRI scanners.
From start to finish, the procedure takes about two hours to complete and typically does not require an overnight hospital stay. When you arrive for your scan, you may be asked to:
Change into a hospital gown
Empty your bladder
A member of your health care team injects the radioactive drug (tracer) into a vein in your arm or hand. You may briefly feel a cold sensation moving up your arm. You rest and remain silent in a reclining chair for 30 to 60 minutes while the tracer is absorbed by your body.
During the procedure
When you are ready, you lie on a narrow, padded table that slides into the part of the scanner that looks like a doughnut hole. During the scan you must be very still so that the images aren’t blurred. It takes about 30 minutes to complete a PET-CT scan and 45 minutes for a PET-MRI scan. The machine makes buzzing and clicking sounds.
The test is painless. If you’re afraid of enclosed spaces, you may feel some anxiety while in the scanner. Be sure to tell the nurse or technologist about any anxiety causing you discomfort. He or she may give you a drug to help you relax.
After the procedure
After the test you can carry on with your day as usual, unless your doctor tells you otherwise. You’ll need to drink plenty of fluids to help flush the tracer from your body.
Results
A doctor specially trained to interpret scan images (radiologist) will report the findings to your doctor.
The radiologist may compare your PET images with images from other tests you’ve undergone recently, such as MRI or CT. Or the PET images may be combined to provide more detail about your condition.
I hope this explanation of PET scans helps you to understand what is involved and what cancer patients go through as a regular part of their care. Depending on the type of cancer and the treatment plan, most cancer patients are scanned every three to six months. I am scanned every four months because my cancer, in both 2019 and currently, has proven to be aggressive, so my oncologist feels that every three months is too often, but every six months is too long between scans, making both him and me nervous.
I will post again once I have my results, but in the meantime, if you have any questions, don’t hesitate to get in touch with me. Thank you for being here! 💕
Many people have asked me to explain what Metastatic Breast Cancer is and what it means for my future. There are a lot of misconceptions out there as to what a stage 4 MBC diagnosis means. The information below is an excellent explanation, that is clear and easy to understand. I previously posted an article specifically about the Myths and Misconceptions About Metastatic Breast Cancer which highlighted many of the questions that I have been asked since being diagnosed back in March.
Metastatic breast cancer {also called stage IV} is breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body. Although metastatic breast cancer has spread to another part of the body, it’s still breast cancer and treated as breast cancer.
The most common breast cancer metastasis sites are the bones, the lungs, the brain, and the liver. The symptoms of metastatic breast cancer can be very different depending on the location of the cancer cells.
Bone Metastasis: Symptoms and Diagnosis The most common symptom of breast cancer that has spread to the bone is a sudden, noticeable new pain. Breast cancer can spread to any bone, but most often spreads to the ribs, spine, pelvis, or the long bones in the arms and legs.
Lung Metastasis: Symptoms and Diagnosis When breast cancer moves into the lung, it often doesn’t cause symptoms. If a lung metastasis does cause symptoms, they may include pain or discomfort in the lung, shortness of breath, persistent cough, and others.
Brain Metastasis: Symptoms and Diagnosis Symptoms of breast cancer that has spread to the brain can include headache, changes in speech or vision, memory problems, and others.
Liver Metastasis: Symptoms and Diagnosis When breast cancer spreads to the liver, it often doesn’t cause symptoms. If a liver metastasis does cause symptoms, they can include pain or discomfort in the mid-section, fatigue, and weakness, weight loss or poor appetite, fever, and others.
Cancer cells can break away from the original tumor in the breast and travel to other parts of the body through the bloodstream or the lymphatic system, which is a large network of nodes and vessels that works to remove bacteria, viruses, and cellular waste products.
Breast cancer can come back in another part of the body months or years after the original diagnosis and treatment. Nearly 30% of women diagnosed with early-stage breast cancer will develop metastatic disease.
Some people have metastatic breast cancer when they are first diagnosed with breast cancer (called “de novo metastatic”). This means that the cancer in the breast wasn’t detected before it spread to another part of the body.
A metastatic tumor in a different part of the body is made up of cells from the breast cancer. So if breast cancer spreads to the bone, the metastatic tumor in the bone is made up of breast cancer cells, not bone cells.
Being diagnosed with metastatic breast cancer can be overwhelming. You may feel angry, scared, stressed, outraged, and depressed. Some people may question the treatments they had or may be mad at their doctors or themselves for not being able to beat the disease. Others may deal with the diagnosis of metastatic breast cancer in a matter-of-fact way. There is no right or wrong way to come to terms with the diagnosis. You need to do and feel what is best for you and your situation.
Keep in mind that metastatic disease is NOT hopeless. Many people continue to live long, productive lives with breast cancer in this stage. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.
While metastatic breast cancer may not go away completely, treatment may control it for a number of years. If one treatment stops working, there usually is another one you can try. Cancer can be active sometimes and then go into remission at other times. Many different treatments alone, in combination, or in sequence are often used. Taking breaks in treatment when the disease is under control and you are feeling good can make a big difference in your quality of life.
I like to share articles with you, my readers, that I can relate to and that have helpful information. No matter how I try to explain to someone what I am going through, I find that most people think of the best-case scenario or the worst, with nothing in between, which is where I feel I am presently.
The type of grief that comes with chronic illness is complex.
Grief is an experience that can completely consume you mentally, physically, and emotionally, and it doesn’t just happen with the traditional sense of loss.
In fact, going through the stages of grief can happen as a result of any major life change.
For many disabled and chronically ill people, grieving their health after a new medical diagnosis can be an unexpected challenge. The type of grief that comes with chronic illness is complex, and the cycle can often restart each time a new issue presents itself.
Here, we look at the standard five stages of grief according to Swiss-American psychiatrist Elizabeth Kubler-Ross, but through our relationships to our own bodies and what it means to mourn ourselves.
People who experience grief might be familiar with this first and well-known stage.
Denial, simply put, is the act of rejecting reality. Denial often comes first in the stages of grief because when a major life change occurs, the mind and body have to work to process the situation.
When you’re going through a medical complication, there are often signals that flash throughout your body to say, “Something isn’t right.” These could be flare-ups, worsening chronic pain, new symptoms, or a variety of other daily disruptions that you observe.
Even though you know logically that you’re entering a new relationship with your health when a new medical issue comes up or you get a new diagnosis, it’s common to need time to work through denial before beginning to process exactly what it is you’re feeling.
In the beginning of the grief cycle, you might deny the whole truth or just parts of reality.
Telling yourself that this isn’t really happening, that it’s “all in your head” or “not that bad,” is a way for your mind and body to protect itself from the emotional strain of grief.
You might also downplay the severity of the situation as a way to cope by:
rejecting pain
ignoring symptoms
hiding symptoms from loved ones
pushing through the health issues as though everything is okay
doubting yourself and the validity of your concerns
For those who don’t have chronic conditions, it might be hard to understand why denial is a common first step in processing medical trauma. Don’t we want to know what’s wrong? Don’t we want to fix it?
The answer to these questions is yes: We want to have an explanation for the symptoms and, in a dream world, a solution. But it’s not that simple.
A vast majority of chronic conditions are long-lasting and only offer symptomatic treatments rather than a cure or solution. Essentially, when you receive a new diagnosis (or if you’re still waiting on one with ongoing symptoms), the reality of time kicks in. The timeline changes.
Suddenly, you aren’t looking for a name to explain your pain, your symptoms, or your sleepless nights. Once you know what the underlying problem is, you know that the next step is to move on to treatment.
Yet, this next step can often feel impossible. And in the case of chronic illnesses, you know that this issue doesn’t necessarily have an end date.
So, to cope with this new reality — even if you’ve been waiting for a diagnosis or an explanation or someone simply to tell you that they believe you — you might enter the denial stage to try to convince yourself that it isn’t that bad. That it isn’t real.
If you’re currently in denial about your health, know that this is okay. If you’re able, allow yourself time to process the facts of the situation.
You might choose to write down a list of the facts (i.e., “I felt pain today,” “The doctor told me I had a tumor,” “I am waiting on blood work results”) until they start to feel real.
You might also decide to schedule a set time during the day to distract yourself from reality by reading a book or marathoning a show. Taking breaks is a great way to give yourself the space you need to process all the new changes in your life until they don’t feel so overwhelming.
Another strong emotion that you might experience is anger — at yourself, at doctors, at the world.
When anger is burning through you, it means you have most likely come to understand the reality of your situation. But this doesn’t necessarily mean that you’re ready to accept it.
Sometimes, it feels easier or more manageable to lash out at others when you’re grieving for yourself.
That doctor who didn’t listen to you sooner? The receptionist who scheduled your appointment right after a full day of work? The parking lot with no accessible spots? Their fault.
But you also might turn inward on yourself, especially if you experienced denial previously.
You might ask yourself why you waited so long to report symptom changes or why you didn’t get your medicine refilled. This can bring on a lot of self-hatred and seriously harm both your physical and mental health.
During these moments of anger, take a moment to recognize what you’re feeling, first and foremost. There’s a reason why anger is a key step in grieving — it allows you to start feeling again, as well as to examine your own feelings toward the situation.
When you feel that you’re ready to start letting go of the anger, there are different coping strategies that can help you process these strong emotions, such as art therapy, venting to friends, and practicing mindfulness.
But remember: When feelings of anger come back up as you go through the grief cycle, recognize the sensations and reflect on how they’re manifesting. Is your jaw clenched? Has your tone changed? Taking stock of your emotions can help you to reconnect with your body, especially when your body is the source of frustration.
In chronically ill people, depression and other mental health conditions can also often muddle or confuse symptoms. Depression can make chronic pain worse with head, body, and stomach aches.
How do you know when your symptoms are from depression or from a different medical issue?
First, let’s note that no matter where your symptoms stem from — whether it’s physical, emotional, mental, or behavioral health — they’re valid.
Too many chronically ill people have been labeled as “attention seekers.” This disbelief in our symptoms and our bodies only makes the grieving process harder.
Know that whatever you’re going through, there’s a community of people out there who understand what you’re feeling.
That being said, it can be hard to advocate for your needs when you’re in this stage of grief. You might feel that it’s pointless to keep searching for a diagnosis or treatment. You might find yourself wishing that all of these problems would just go away.
Depression is something that often requires additional services, such as counseling. For crisis intervention, please seek out these resources on how to keep yourself safe during this vulnerable process.
What if the doctor is wrong? What if I had done something differently (diet, exercise, medicine, therapy, surgery, etc.)? What if I got into the specialist sooner?
Though this isn’t the same as denial, in which you’re trying to shut out reality, this stage might feel similar because you’re thinking of all the ways that the situation could have gone differently.
Even though you can’t actually change the past (or predict the future), negotiating with your health can be a way to process this new reality.
In fact, even after we “complete” this stage of grief, many chronically ill people still work to negotiate with their abilities as they learn their new limits. In this sense, the bargaining stage of grief is one that often reoccurs as our health continues to evolve.
Acceptance of reality. Acceptance of the pain. Acceptance of how different your relationship to your body might be now.
Research suggests that coming to terms with chronic pain can actually reduce the severity of your physical and emotional pain.
By accepting it, you acknowledge that it’s there without judgement. Then, you’re able to move forward in using coping strategies and different treatments to address the pain.
It’s important to note, though, that acceptance doesn’t mean that you have to be happy or pleased with everything that’s happening to your body and health. Acceptance does not have to mean contentedness.
You might still feel angry and depressed and overwhelmed at your situation — but this is okay.
Our relationship to our bodies is intimate, complex, and always changing shapes.
Though a new medical diagnosis or concern can restart the grief cycle, this final stage of acceptance is one that we’re always working toward.
The truth is that we don’t have much control over our bodies, which is terrifying. We can’t wish away pain or illness like blowing on dandelion puffs — no matter how hard we try or how many stems we pluck.
But we can learn to trust the cycle of grief and know that these feelings of loss are temporary. Most of all, we can practice a little self-forgiveness and self-kindness.
We can allow ourselves to be messy and mad and human.
These feelings and experiences might leave us feeling vulnerable, but through this, we find strength. In the end, we always find a way to survive.
