Hair

Natalie

 

Before I go into my fun with chemo, can we talk hair?

Everything I have heard and read takes the stance that chemo induced hair loss is basically a vanity issue. Though the articles are less blunt and say things like "women consider their hair their crowning glory". Then go on to talk about how much time and money women spend on hair dressers, hair products, etc. How devastating it is because women "identify" with their hair.

Yes, the looks aspect of hair loss is traumatic. (I look like my Dad!)  And, yes I have spent plenty of time and money on my hair. But that was not my greatest concern. I am a very private person. My dread of losing my hair was of being transformed into someone who must reveal to the world, through my baldness, that I have cancer. 

I didn't especially want my grocery store cashier or librarian, much less perfect strangers, to know that about me. I don't want people giving me that look.

I didn't do the head shaving party or take before, during, and after photos. Too sick to party. Too upset to want my picture taken.

I ordered a cheap wig named Natalie from the American Cancer Society catalog. It cost $48. They have some cute hats too (as well as plenty of ugly ones). Another place I ordered a few cute hats was Head Covers.

Stay tuned for much, much more about hair loss and regrowth.

I am going to an Oncologist (c-a-n-c-e-r d-o-c-t-o-r)

Asheville Hematology & Oncology

 

The first day we met Dr. V, he got right down to business. I truly don't remember too much about what we talked about that day. My husband probably remembers more than I do and he probably took notes; he has been very meticulous about that. And I felt like hell--still running fever, still short of breath, getting weaker by the day.

One of the things I do remember is the Bone Marrow Biopsy. Oh yeah. The very first day we met! I didn't think he had even gotten to first base and here is was going all the way for the home run. Yep, we marched to another room where I got onto a table on my side with one leg pulled up. My husband was there, Dr. V's assistant, and someone from the lab who was dressed in full protective gear, face mask and all. I couldn't tell  what was going on in the room once I was in the position.

What I remember is feeling a lot of pressure. Then a lot of pain. A lot of pain. And I started crying. They let my husband come and hold my hand.

On my way to get the bone marrow biopsy, I went by the lab where 11 vials of blood were drawn.

Afterwards, I walked to the other side of the building to meet another doctor, an oncology surgeon, who would be placing a port-a-cath into my chest and excising a lymph node from my armpit for biopsy. I had an ultrasound of said armpit in order to mark which node would be excised.  That doctor seemed very nice that day, but my husband and I both would develop very bad feelings about him over time.

I also got orders, that day, to go to the heart tower at the hospital for an echo cardiogram, and also to get a PET scan.

What a day! I barely remember crawling to the car to drive home and nothing of that evening.

I don't know if Dr. V used the blue handled or green handled awl (or both) to drive into my hip bone. My husband said he was straining, shaking, sweating, and working hard to get into the bone.

CT Guided Core Needle Biopsy

My Back the Next Day After Dressing was Removed

That Tuesday, in Dr. N's office, she told us she was going to order a biopsy of an abdominal lymph node. Friday, my husband and I went to the hospital for our introduction to Interventional Radiology, of which we would become quite familiar. I liked the doctor I had that day and I loved the nurse. Her name was Angie. She was good with needles, which always helps, and she started an IV with no problems. While I was being prepped, the doctor came in and explained the procedure--he would be going through my back with a long needle to take a sample of an abdominal lymph node. Yikes!

Angie told me I would receive sedation consisting of Versed and Fentanyl. She said I would most likely be awake but just not care. She rolled me into the procedure room where she and a tech positioned me on the very narrow table, face down, feet towards the tube, arms stretched out over my head,  and strapped me down. Angie admonished me not to move and if my nose started itching (??) let her know and she would scratch it for me. They backed me in and out of the scanner a few times to align me for the doctor.

When the doctor came in, he proceeded to stick the needle in. I could hear it crunch and said so. He was surprised because he thought I was asleep. He told the nurse to sedate me and I was immediately asleep. When I awoke, I was on my back, on a gurney, with Angie wiping sweat from my face.

She rolled me back to the recovery room where 2 bottles of that delicious contrast liquid were waiting for me. After I drank it I was rolled away for an abdominal CT scan.

Both procedures turned out to be rather pointless and our insurance company originally balked at paying. The biopsy confirmed lymphoma but no other needed information was gleaned, such as the type and stage of the lymphoma. My first CT scan had already shown the abdominal lymph nodes.

It was only after I asked, demanded really, that I was referred to Dr. V, my Hematologist/Oncologist. My husband and I both have really appreciated our relationship with him. Much, much more about Dr. V and his wonderful nurses and staff will follow. 

The Beginning

Last August 10th, several family members got together for a few days visit to our twin grandsons. We all stayed in the same hotel and we all left sick with upper respiratory symptoms. We didn't speak of it at the time but we all thought there was something funky about the ventilation in the rooms. 

Monday, my husband and I woke with scratchy throats. Tuesday, I developed a scorching sore throat. Wednesday, at work, it became more and more difficult to breathe and I stopped on the way home for Mucinex.  Everyone else's sickness got better, but not mine.

I kept getting sicker and sicker. I started running fevers that lasted for weeks. I was struggling to breathe. I started having drenching night sweats. I felt so bad, but never, ever, not one single time did it ever occur to me that I had cancer.

I went to the family doctor 3 times, took antibiotics twice and steroids once. Nothing. Finally Dr. N gave me a breathing test which I flunked. She then gave me a breathing treatment and re-tested me. Still flunked it. She ordered an x-ray, which was abnormal, and followed by a CT scan--my 1st of many to come.

My husband and I met in Dr. N's office and she informed us that I most likely had Lymphoma. I had no idea what that meant, so she had to spell it out: c-a-n-c-e-r.

Twin A and Twin B

 

Before and After

When I first became sick with Non-Hodgkin Lymphoma, it was suggested that I keep a diary of my experiences as I traveled on this journey.  There are plenty of reasons I did not.  First one being that I was so sick and felt I would never want to remember it. Secondly, I was in shock and couldn't fathom how gravely ill I really was. Writing it down may make it a reality I couldn't deny. Furthermore, there are periods of time I am unable to remember. My husband has filled me in little by little as I have continued to regain my health.

My Remission was confirmed in February and it is May now. I finally want to talk about what I have been through. I want my voice heard and it is my hope that someone who is where I once was will find my little corner of the Internet and be comforted and cheered. Things really and truly will be better. I promise. 

This photo was taken 6 weeks before my diagnosis and 8 weeks before my first chemo. I had no symptoms and no clue! I had never been sick and had just been given a clean bill of health a couple of months before this. My mammogram, pap smear, and all my blood work were perfectly normal. I took no medications of any kind and had never had any surgeries. I have always loved to cook and I believe in eating healthful foods. I went to the gym and was physically fit. I was healthy! Never had colds or flu. Never missed work due to illness. No complaints of aches or pains. No headaches. I can't have cancer; that is preposterous.

I miss my hair! I miss my color and the healthy glow of my complexion. I miss my scar-free chest.

~ ~ ~

Nine months later, it looks like 20 years have gone by. I lost a lot of weight very quickly and it sure shows in my face. Since I no longer have that nice layer of fat under my skin, it just hangs there. Because I have had a lot of trouble with chemo induced anemia, I have been as pale as snow. At least I am getting some color back. Here, I am wearing lipstick and eyebrows but no other makeup. And they say I look good. It makes me feel so sad thinking of how I must have looked when I was really sick.

Quick, put on a wig and scarf!