Questioning the Status Quo

As you can imagine, I've been through the ringer when it comes to medical testing (as have most of you). Some were simple blood draws…though up to 8 vials at a time. While other tests were much more painful. Think bone marrow biopsy and electrified probing needles. Most were just at varying levels of discomfort. A topic came up on a CVID group about knowing when to speak up for yourself when it came to testing. Most agreed that they often suffered tests in silence because they didn't want to come across as the problem patient or cause a scene. I have been guilty of this in the past. Not so much now. You can politely complain or question something that is about to be done. I recently had an experience that made me look at things from the tech's perspective as well.

Sometimes when it comes to my medical issues
I feel like grass being blown about by the wind,
but I take control where I can to calm the breeze
and regain a place of strength.

"Wildness By The Water"   7.25" x 11"
Acrylic on Masonite   $375 

I'll start with the polite questioning scenario. A week ago I had a dermatology appointment to have a new rapidly growing mole examined. It would periodically itch intensely and was changing color. Being fair-skinned, blue-eyed with a healthy dose of red in my hair and having a basal-cell mole removed in my early 20s, I was worried. The dermatologist had a young doctor following him around that day. I explained my concerns and stated that because of the immune deficiency I was more susceptible to cancers. He looked at the spot and said he believed it was a benign growth, but that if it bothered me, he could freeze it off. I paused a moment and said, "How positive are you that it isn't cancerous?" He responded with, "There are some cancers that may not look like cancer." "Hmmm, I would feel much better if we went ahead and biopsied this." He said that was fine and we did the procedure. The young doctor observed all this and started asking me questions about the immune deficiency and if my family had related issues as well. He also generously took my jacket as the dermatologist looked at additional moles on my arms and back and set it with my purse. I was thinking, I hope you retain that bedside manner as the years pass and that you understood my concerns and reason for asking for the procedure. 

At that point the nurse was handing a needle to the doctor and I said, "that's just lidocaine, right?" She said, "Oh, yes." Immediately the dermatologist said, "No, it has a little bit of epi in it. Do you have problems with that?" Not exactly. I explained I am also prone to heart racing and that it was possible the epinephrine might trigger it. So he asked the nurse to get a syringe without epi. I was glad I had spoken up. I had a phone message yesterday that the growth was indeed benign, but I don't regret having it confirmed one bit.

I also recently had my left breast examined again to check for tumors. I had a mastectomy of the right side in September. My doctor just requested a sonogram, but the imaging center insisted on a screening mammogram and then after looking at it called me back for a diagnostic mammogram before we ever got to the sonogram. The mammography tech was very nice and the policy certainly wasn't her fault, though I did question why we were doing this since it wasn't on the order. She got noticeably flustered and I felt bad. When it was all over she said to me, "I know you have been through this all before, but you were really patient." I replied that I was just thinking that this didn't hurt nearly as bad as the last time I had it done. At that point she absolutely beamed. She started telling me how she was really conscious of the psi that she was using and had done tests that showed, past a certain point, additional compression didn't improve the detail in the digital files. She really tried to make the patient as comfortable as possible. I was having a difficult time not smiling really big at her enthusiasm. I had just completely made her day with my offhand remark. I thanked her for her attention to detail and as I left the room thought about how many women must complain during the procedure. It's not pleasant. Someone is moving private parts of your body around and placing you in awkward positions. As an artist and graphic designer, I'm used to positioning models, product or a set up for a still life painting and the direction she was giving verbally or her physical positioning of me; I never once thought it odd or unusual. I do the same thing in a different setting, but I can see how just about everyone else would find it strange and feel vulnerable. I am going to make a big effort from now on to thank techs that do a good job. They deserve it.

Real or Imagined

I told Ed last night that I had rejoined a Facebook group for CVID…my immune deficiency…and that I kinda wish I hadn't. Since this one is a closed group, people are much more open about their problems and I was just about in tears reading posts. People having to choose between paying their mortgage and paying insurance and thinking their families would just be better off without them. Losing insurance means losing the antibody infusions. No one can afford them without insurance and for many it's still a struggle with insurance. Right now a major insurance company is forcing patients with a CVID diagnosis to cease treatment for 4 MONTHS in order to PROVE they still have the illness. One week past my normal infusion schedule and I'm in pain and sick. 4 months could kill a person. They are also just refusing to cover the treatments for many altogether. Insurance companies deciding treatment, not doctors. 

Then there are so many who have family, friends and spouses that think it's not real or that they are somehow causing the problem by not eating right or not taking the right supplements. They accuse them of just being lazy or stupid. People whose family members have not spoken to them for YEARS just because they are sick; because they don't understand the genetic nature of the illness or the variableness of the symptoms. The online community is all they have in the way of emotional support. Many are too sick to work regular jobs. A lot of us have secondary autoimmune conditions which are worse than the primary immune deficiency and/or have cancers. They are barely surviving. One bad illness can wipe you out financially. Imagine one that is lifelong and expensive to treat.

I want to thank my husband, my family, my friends, my coworkers and my doctors for believing. For not making me feel this isn't real and for the understanding and support. Coworkers stay away from me when they are sick and are understanding of doctor appointments. Friends insist on accompanying me to appointments to provide moral support or have lunch with me during an infusion. My husband has learned to devise meals that I can eat and are delicious. He does the vast majority of the cooking. He is also there for me when I occasionally indulge in a bout of self-pity. I appreciate this so much. It means everything. I am a strong person, but it would be so much harder without your support.

I am thankful I can still work full-time and function in the world, though I have to watch my day-to-day energy expendature. I have a great job, a creative, challenging job, that I enjoy with good benefits. I can sell my paintings for additional income. Again, something that is already a passion for me. I have a house that is paid for because my late husband, Tom, was adamant about having enough insurance to cover it if something happened to either of us. I make enough money, so that my husband, Ed, has been able to go back to college and pursue his passion and he is happier because of it. I have people that love me. I am in a much better place than so so many of my fellow zebras. I also know I could lose it all in a blink. That I am walking on a wire and doing everything I can to not fall.


The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community.

"When you hear hoofbeats think horses...not zebras."

Wounded Animals

My husband, Ed, tells me I have a huge heart, but he's definitely biased. For much of my life, people who didn't know me well would describe me as aloof. They would assume I thought I was better than them and would go out of their way to not talk to or include me. I don't entirely blame them for the misjudgment. In person, I'm not easy to get to know. Introversion and shyness are not interchangeable, but I am a person that defines both these terms. Painfully so for most of my life. I avoided eye contact, didn't speak first or call out a hello, generally looked at the ground while walking. That last one had a benefit, though, I found a lot of loose change over the years and a winning lottery scratch off ticket. I hated small talk and am still not that good at it, so I avoided getting into situations that might require it. I can be overly blunt which some people find hurtful or just plain unfriendly. In a way, I ostracized myself, but never because I thought I was better. Quite the opposite.

As a child, this made me a target for "Mean Girls." I looked like them. I could have been one of them, but instead always had my nose in a book, was focused on my grades and my art. I liked science and animals such as snakes and bats. I was weird. I didn't NEED to be one of them and I think that is what really set them off. I did want friends and always had a close-knit group of like minded people around me. I didn't want to be popular. I didn't want the drama, but they brought it on me anyway just because I was different.

I gravitated to animals from an early age. I had an innate understanding of them. I could read their body language. They were more predictable and less judgmental than humans. Not just dogs and cats. I could get closer to wilder animals than anyone else I knew. Maybe because we shared an understanding of fear. I never did anything to cause them to distrust me. Building trust is the key to everything. I didn't trust people because of the way I was treated. I trusted animals. This led me to adopt many abused and abandoned creatures throughout my life…from a large lizard that was lost in the storeroom of a pet shop, to a parrot who had his wing torn up by a previous owner, to many dogs and cats.

The most recent is "Pretty Boy Floyd," an Australian Shepherd. We've had him for just a couple weeks. I have a special affinity for this dog breed. He was described as 'shy' but it is much deeper than that. He is terrified. He clung to the nearest person, but was scared to be restrained in any manner. He refused to leave the concrete when we tried to take him into an outside run at the animal shelter. On the way home, it was an hour and a half drive, he had diarrhea twice and threw up once from fear and stress. At home, he thankfully got along with the other dogs and cats. Floyd's had to learn that he has a bowl all his own and he doesn't have to steal mouthfuls of food and run away to eat it. We've had to be careful when we praise him for learning something. The excited, happy sounds scare him. Talking too loudly scares him. He seems bewildered when we hand him toys and nylabones to chew. His look says, "Really? This is for me? It's mine?" as he takes it gingerly. Any sort of correction to behavior results in him believing he's been banned from the activity altogether. In spite of this, Floyd is learning rapidly and is trusting more. When we took him to the vet to be checked out and get shots, I think he feared being abandoned again. He struggled out of the harness, then chewed through the leash while still in the car. Going home was a completely different story. His demeanor changed entirely. He was alert and happily looking out the windows. We gained bonus points with him that day. We didn't leave him as he feared. He just needed an opportunity to be happy and learn that life can be good.

I think the majority of us are wounded animals, no different from Floyd. The Mean Girls were mean because something inside of them was broken by another that caused them to lash out. Their victims often silently accepting it and many even blaming themselves. Life is filled with loss, difficulties and disappointments that can overwhelm us. It's no wonder that compassion seems lost. I pushed away most others because of the fear of being hurt. When I first got sick, I kept it to myself, didn't ask for help or understanding, didn't show the pain or fear. I didn't think others would want to visit me in the hospital, so I didn't ask, though I was lonely and scared. I relied too heavily on my husband, Tom. He was shouldering a huge burden caring for me, the house, the pets, dealing with medical insurance and bills and trying to work a full-time job. He too only shared his pain with very few others. 

When he died, something in me broke. I had just lost the one person I trusted fully and my entire emotional support system. The wall I built around myself for protection crashed down. I was completely exposed. For the longest time I had believed that people couldn't change and that we were never victims of circumstances beyond our control. I felt that if something bad befell a person, it was their job to fix it. Bad things happen for no reason every day and sitting in a heap on the floor lamenting it, but doing nothing solves nothing. What I failed to see was that sometimes it's not a lack of wanting to make things better, but truly not knowing where to begin. Though I would do nearly anything for an animal, I saw people differently. I had little compassion for my fellow humans. Due to my own pain, choosing to see only how we hurt each other and hurt the creatures around us. Then I did something that not only surprised my few close friends, but me as well. Instead of walling myself back in, I shared my pain. Maybe my struggles will help others dealing with the same issues. I didn't expect any direct feedback. I wrote for myself with the thought that maybe others were reading. What I received was an outpouring of compassion. Compassion that I didn't expect and in some cases from people that had been the cruelest to me. I felt connected to the human race for the first time in a long time.

People are kind. People will help if you ask. Given the opportunity, people will rise to the occasion. It was enlightening. Conversely, others who are struggling, who are down so deep that they can't see the sky, who are bitter and hopeless aren't always a loss. Compassion, attempting to understand, looking outside of our own personal pain, we can use these things to help those burdened with hurt and anger. People can change. People can learn to trust again. Something as simple as a smile or a compliment on a job well done can make a person feel like they mattered. That THEY made a difference. We get caught up in our own problems and struggles, but sometimes in helping others we actually end up helping ourselves heal our own wounded animal.

Maybe I do have a big heart, but only because I learned that I was wrong about people. Only because I was shown compassion in response to my pain and loss and that gave me the ability to show it to others. Being able to share my struggles and receive feedback has lifted a smothering weight off me. I'm lighter and happier and that gave me the ability to open my heart to another and be happy.

My Thankfuls

I got in the car this morning and thought about Tom. Tears started to well up. The emotional pain I went through when Tom died is resurfacing as I think about what lies ahead for a Facebook friend who lost her husband recently. We share the same birthday and his death will forever be linked to it and to Thanksgiving for her. Once again I am reminded how quickly life can change. Change being the only constant in life.

My husband has been posting daily "what I am thankful fors" on Facebook for the entire month. He is not thinking of them ahead of time. He is waiting to be inspired by something that has occurred that day. Many of them have centered around me. For that I am thankful. He doesn't live in my body and can't truly experience my illnesses, but they certainly impact him and I worry from time to time that it will drive him away. That I bring him happiness is still a concept that amazes me. That I found love again also amazes me. That I am able to be happy at all amazes me. Learn from change. Adapt to the changes. 

I've lost physical abilities and I've lost people that I can never get back, but I have gained so much more in wisdom, gained the ability to appreciate what I have left and what I can still do. Living is very much worth the price I have paid and continue to pay to remain here. I make a difference by being here. We all do. We impact family members, friends even strangers. Hopefully for the betterment of us all. There is power in this. Use it wisely. 

I dropped my hearing aid, for the good ear of course, on the stone floor one cold morning last week and parts of it shattered. I managed to get an appointment at the ENT doctor's office yesterday and asked to get my hearing checked at the same time. They were completely swamped and I spent the better part of the day there. Though I had other things I planned to get done, it wasn't worth getting angry over. By the profuseness of the apologies and being told that no one had even taken a lunch break, I think other patients weren't so patient. Initially, they thought they would be able to fix the hearing aid while I waited, so after the hearing test I was put in an exam room rather than the waiting room. The door was open and the Physician's Assistant came in and sat down and introduced himself. Thinking he had some information to share, I waited expectantly. He finally said, "I just needed to take a break." I laughed and replied, "Just needed to get out of the main flow, huh?" "Yeah…so where are you from?" At that moment a favorite quote from the television show "House" popped into my head, "It's what life is. It's a series of rooms and who we get stuck in those rooms with adds up to what our lives are." I decided to take it literally. What ensued was an amusing conversation about the difference between living in Dallas versus Ft. Worth, other states he had lived in and later that his daughter was an artist living in Oklahoma City. I also learned that the power was out at their other office due to the sleet and they were funneling people here. That's why it was so crazy. They were trying to accommodate everyone they could. I hope our conversation was the break he needed. Before I left, I was talking with the audiologist and the P.A. came in, pointed at me and said, "she's really nice." Well, at the very least, I didn't make anything worse for them and I saved myself the energy it would take to get angry at the long wait. Let go of what you can't control.

I'm not sure where I had intended to go with this blog entry. It turned into a stream of consciousness kinda thing. Ultimately I guess it's about what I'm thankful for (it is Thanksgiving after all)…my husband who I appreciate dearly, my painting and writing abilities that allow me to share pieces of myself with the rest of the world, that I am still able to work and to have a job that makes use of my creative talents, my pets that bring laughter into my life, the friends and family that have been so supportive, medical technological advances that caught my breast cancer early enough to consider me cured and of course all the plasma donors who I truly couldn't live without. I am warm, safe and happy and that is so much more than many people have. It's not worth lamenting what is gone. No regrets. 

Happy Thanksgiving!

At a Loss for Words

"Sunlit Lake Fog" • 6"x6" • Acrylic on Masonite

"Sparrow, get off of those clean pillows!"

I was in the laundry room which has shelving for clean linens, bulk item storage and a place to hang clothes temporarily as they come out of the drier–except it's become more of a second closet for me. My clothes just don't seem to make it to the bedroom.

Ed walked in and heard me chastising our cat. "Uh sweetheart, what pillows? I don't see any pillows." He's teasing me. They were in fact several stacks of towels. In my head I said towels, but that's not what came out of my mouth. I wonder if I'm losing my mind. I had already forgotten my hearing aids twice. I never forget them. I have to reread anything I write 3 or 4 times to catch mistakes. Such as typing 'booth' instead of 'books.' On multiple occasions, instead of speaking the word that I have in my head, I say one that sounds very similar, but likely does not have the same meaning. Better yet, I can't find the word I want at all until 5 minutes later when it suddenly pops into my head at which point I speak it aloud completely out of context.

So when I saw the Physician's Assistant for my oncologist on Tuesday before my infusion and he asked how I was, the first words out of my mouth were, "I'm okay, but Tamoxifen is making me stupid…(long pause)…and forgetful." He laughed and asked why I thought that. So I added "As an example, I forgot my hearing aids, so I may have trouble understanding you today." 

I had done a little research already of course and ran across a few forums where other breast cancer patients were discussing a similar experience with Tamoxifen. I never gave birth to children, so I don't have any personal experience with the "Mommy Brain" that is blamed on hormone fluctuations post birth, but I figured if this drug's job is to block hormones, then I'm likely finding myself in a similar predicament. I also keep calling our new cat she instead of he. Frankly, I doubt he cares and is just happy to be off the mean streets of Granbury and in a loving home with regular meals, but my mistake seems to bother Ed a bit, since he corrects me every time. Then I think of the TV show "The Closer." If you were a fan, you'll know why.

Josh, the P.A., is nodding his head and has a slight bemused smile on his face as he's listening to me detail my answer to the "why I think that" question. I'm trying to decide if I should be annoyed that he's finding this amusing, but determine that it actually is, a little. Until he calls me, M'aam, which does annoy me because in my head I'm still in my mid-20s. Then he confirms it. "Yeah, it's likely the Tamoxifen." The Tamoxifen that I'm supposed to take for the next 5 years! It's only been a month and I already feel like I'm going insane. FIVE YEARS…or until I go into menopause naturally. "But my job is to be creative on demand. That's a little hard to do when one's brain is in apparent hormone withdrawal," I implored. "And my obsessively detail oriented nature is one of my strongest assets." There are other drugs, but they are usually given to post menopausal women he tells me and suggests I speak with the oncologist at my next appointment with her. He actually stated another oncologist's name and I said that's not right and my brain decided for dramatic effect to completely lose the name of my actual oncologist. 

So until this gets sorted out please avoid going grammar nazi on me. Forgive me if I put my glasses in the refrigerator or if I stop in mid-sentence at a complete loss for words. If I call towels pillows and pillows towels, or if I forget something I'm supposed to do for you, a gentle reminder would be appreciated. Now I'm going to go reacquaint myself with writing lists and the wonder of post-it-notes.

Patience…how to teach your dog to shake in 10 minutes.

The mastectomy didn't just remove tissue, it has my energy level pegged firmly on empty. The lack of energy is making me reevaluate the importance of things that need to be done. The frequency of vacuuming the house or mopping the floors has definitely declined. Dogs need to be brushed and bathed and it hasn't happened. Fortunately, Ed handles all the grocery shopping and cooking. I'd likely be starving otherwise. Some things I have no choice in confronting. Going back to the day job full-time. Painting to bring in extra money to pay unexpected medical bills. My continuing antibody infusions, autoimmune issues and ongoing breast reconstruction demand time and attention as well. Sometimes I want to just curl up and sleep for 24 hours straight. I'm still working to find an acceptable balance; figuring out what I can and can't get done. It's a little frustrating. I was already living at a lower energy level than the average person and this additional hit has knocked me to the ground.

"Two of a Kind"
4"x4" Acrylic on Masonite • Unframed • $50

The pets don't understand why I haven't been paying much attention to them lately. I sit down and I'm completely covered with cats and at least one dog within seconds wanting love. I make an effort to talk to and pet any of them I see throughout the day, but I don't have the energy to play much and my patience wears thin at times and of course I feel guilty about all of it and I don't have the option of explaining it to them.

What helps the most with chores is keeping up with them before they become overwhelming. Instead of letting dishes pile up, rinse them and put in the washer as you use them. Sweep one room a day instead of all at once. Recently, I applied this same logic to teaching Archie dog to shake. Just do a little bit at a time. He is smart and wants to please me and has quite a vocabulary that he understands already, but not in the way of 'tricks.' He learned sit and lay, but these were more for our benefit in getting him under control. He was a bit wild having been a stray and didn't understand that there were rules to be followed with us and with the other animals. He has learned a great deal, but I decided I wanted him to learn shake. The rest of the dogs already knew how.

I don't like to teach my guys using food reward unless they just refuse to respond to praise alone. In Archie's case, he gets entirely too excited by food to concentrate on anything else anyway. I had to use Cheerios initially to teach him to sit, just to get him focused on me, but moved to praise quickly so that he would follow commands without expecting to get a food reward every time. This method may take longer with some animals but I believe having a dog that trusts and wants to please me is better than a dog who just wants the food.

If you have furry pets, you know it's impossible to go to the bathroom by yourself. I decided to use these little snippets of time to teach Archie. The first few lessons went like this…I would pick up his paw and say 'shake.' His response would be to immediately fall to the ground on his back in a submissive position. End of lesson. I wanted him to figure out what I wanted for himself. To think it through, so I never said 'no' or forced him to get up and try again. These lessons lasted less than 5 seconds total. 

We went through this for a couple weeks whenever he followed me into the bathroom. He eventually stopped falling down and would instead try to gnaw on my hand as I held his paw and said shake. I'd let go each time. End of lesson. Another couple weeks of this. Again, he suddenly stopped putting my hand in his mouth and instead just stood there calmly as I lifted his paw and said the command. I let this continue for about a week. 

Finally, I stuck my hand out without touching his paw and said 'shake.' He looked at my hand and then at my face intently for just a moment. I knew at that point he got it; before he even lifted his paw, you could see it in his eyes. They were smiling. He confidently and enthusiastically slapped his paw right into my hand. I praised him and we both went a little berserk with happiness. I had no idea if this would work. I had been much more conventional in training the other dogs. It was an experiment. I've continued to reinforce the shake to make sure he has it down. Yes, it took over a month for him to learn the behavior, but when you add up the actual time I spent teaching him, it couldn't have been more than 10 minutes total. You can accomplish a lot with a little bit of patience. Occasionally I forget and just need a reminder.

...and so it begins

'Twas the night before Christmas…not even remotely. Though, I will be up before dawn in nervous anticipation like a small child and I do get a couple presents tomorrow. The first is to have the waiting over and the second is to get the cancer out of my body. I suppose that's close enough.

I'm trying to decide how I feel. I've bounced up and down between calm acceptance and fear over the past few days. Sometimes multiple times a day. My fear is centered not around the actual mastectomy, but the general anesthesia, we don't always get along. I'll be having a long discussion with the anesthesiologist prior to surgery and hoping they can mitigate the negative effects it has on me. Lack of control, I'm sure, is playing a huge part in my emotional swings. It's not easy for me to let go and hope for the best without my hands on the reins. Right now I'm back to calm acceptance. I'm just ready for it to be over.

Earlier today I went to the hospital for the lymphoscintigraphy which consisted of shots of a radioactive tracer that felt like wasp stings then imaging to track the tracer to the first lymph node. This is what they will remove and test to confirm that the cancer has not spread. I had a special 'navigator' with me, a breast cancer survivor herself, to hold my hand during the procedure and and who will also see me before the actual surgery. 

"Autumn Glow" -Waving grasses and colors that calm me-

This is going to sound wrong, but when I checked my messages on Friday and had a call from one of the other support navigators asking me to call back, I actually got angry. Let me try to explain. I am not that worried about the whole breast cancer diagnosis (though the thought of surgery itself does scare me). At least with cancer you have a firm diagnosis and course of action, and most importantly, a possibility of a cure. Especially if caught early. There are distinct steps to take. There is an end to treatment. I have received informational books (more like novels in some cases), offers of local support groups and now a special support navigator. 

All I could think was where was all this support when I was searching for what was wrong with me years ago, when I was lying in the hospital often alone, dying. Even after. I had to seek out others like me. Scavenge for information. No one handed me books on how to deal with my diagnosis or or even a clue where to search for answers. Thank you internet. I joked with my infusion center 'navigator' when she handed me the first 'book' I was to receive that I've been going there for treatment for years and apparently it took getting cancer before I mattered. I WAS joking at the time, but with each offer of help, it's rubbed it in a bit more. I am truly thankful that breast cancer gets the support from the medical community that it does, but I still identify with the Zebra herd–the misunderstood, the chronic, the incurable. People relate to breast cancer. They know someone who is a survivor. People don't relate to hypogammaglobulemia or the fact that it doesn't get better. We are also survivors. Every single day for the rest of our lives.

So tomorrow morning will come. I will be at the hospital before day break and this new medical journey will begin in conjunction with the conditions that already exist and I will continue to survive. That seems to be my superpower. Survival. Can't wait to see what battle the Fates have lined up next.