Yesterday was a great day...minus all of the cigarette cravings I had. I kept myself busy from the moment I woke until I went to sleep. I cleaned house, taught the kids, and even had enough energy to cook dinner. The children are learning about ecosystems and habitats in Science, Iroquois Indians in history, Spanish interrogatives, and they are learning how to write a proper paper. They will be doing a narrative this six weeks. I am ecstatic to be the one who shows them how to write. This is honestly what I was born to do.
When I was a little girl, I would play school with my dolls and when I was home sick from school, I would play school with my grandma (she was such a trooper). My teachers would all give me school work they were not going to use for the year and old textbooks. My grandma had a school sized chalk board and I had a legitimate grade book (which I bought with my allowance). I made playing school as close to the real thing as I could. My grandma told me that I would make a great teacher one day. And now, I get to play school every day with my kids...the only difference is, it's real. No, I may not have a traditional teaching job in an actual school, but I get to create my own curriculum and not be mandated by state rules. Having the freedom to teach my children is one of the greatest joys in my life.
Today, I see my primary oncologist, Dr. Roque. I had my scans last week and tomorrow I will find out the results. Please keep praying for good news. I am nervous about this appointment...not because I think the cancer is doing much of anything right now, but because of all of the scarring on my lungs. Having lung cancer is terrifying but having pulmonary fibrosis takes the cake. Interstitial lung disease is irreversible. If the cancer does not spread and take my life...this will. And I am scared to death. I just want life to go back to normal, but since that will never happen, I have to accept this new normal as my life. I just don't want to.
The stress of being sick, our financial situation, and the effect it is all having on my family is enough to drive a person insane. To be honest, I don't know how we are still surviving. Because of my illness, I lost my car and now I am being threatened with losing my home. I have been praying for answers. I feel useless because I cannot go to work and help my husband with this burden. I just wish that my Social Security would hurry. Now, my attorney said I won't be getting my payments until March. I do not know how we are going to be able to afford my care, on top of bills, on top of groceries, and every day things that we need. I know that God will give me an answer in His time. I just have to be patient and pray that everyone else is patient as well. The new house won't be ready until February...and I hope he holds it until I can get his rent and deposit together. A brand new home without all of the toxins that this house holds would be exactly what we need.
The old Shanna (BC...before cancer) would have already panicked and ran away from this. The new Shanna is so much more patient and tolerant because I cannot change things that I have no control over. Losing control had always been my biggest fear until I got diagnosed. It was like the old, panicky Shanna simply vanished the day I found out I had lung cancer. And some goofy, smiling all the time, happy person took her place. I can even tolerate little messes now, which is not something I was able to do before. I like this new version of me. I hope she stays for a while.
The one symptom I hate the most is the clinical fatigue that I experience on an almost daily basis. Clinical fatigue is more of a bone-deep exhaustion that lasts for weeks, months, or years. I need about 12 hours of sleep a day just to function at a bare minimum...and since I rarely even get five hours of sleep a day, you can imagine how exhausted I am by the end of the day. When I have had a good nights sleep, upon awakening, I feel as though I haven't slept for weeks. It's a complete lack of energy that no amount of caffeine will cure.
It's a feeling that I don't think you can really understand unless you've been there yourself. And, I sincerely hope that my friends and family don't have to find out firsthand (my mom goes through chronic fatigue because of her immense back pain).
I'm grateful that I have found others, mostly online, who have been there/done that because it helps me feel a little less isolated, a little less alone on this illness frontier.
I still find myself at a loss for words when I try to explain to normal, healthy people what I'm going through and why it's not just a matter of bucking up and powering through as many people have implied or out-and-out suggested. It's not that I am lazy or simply that I am out of shape from inactivity due to the length of my illness.
It's a symptom of the cancer and the lung disease...that of course I hope is only temporary and that something will happen and I'll find myself feeling better.
I'm not sure if that means I'm in denial or if I'm just trying to hold on to the power of positive thinking.
Lung Cancer and Lung Disease Facts
Instead of just giving you facts about lung cancer, I am going to also include facts of the lung disease I suffer from. 1. Lung cancer is the second most common cancer in the United States.
2. It starts as a symptom-free disease. According to the American Cancer Society, lung cancer most likely begins when precancerous changes occur inside structures of the lungs, including the bronchi, bronchioles, and alveoli. Genetic changes inside lung cells can then cause the cells to grow faster.
3. Lung cancer can spread before it is detected.
4. Some lung cancers are treatable.
5. Screening can not prevent most lung-cancer related deaths.
Interstitial Lung Disease/RBI-LD/Pulmonary Fibrosis Facts:
1. In pulmonary fibrosis, tissue deep in the lungs becomes thick, stiff, and scarred. The scarring is called fibrosis. As the lung tissue becomes scarred, it interferes with a person's ability to breathe.
2. Pulmonary fibrosis can develop slowly or quickly. In some people, the disease stays the same for years. Usually, a person's breathing symptoms become worse over time. A person with pulmonary fibrosis eventually may be short of breath even at rest.
3. There is no cure for RBI-LD and Pulmonary Fibrosis. Current treatments are aimed at preventing more scarring, relieving symptoms and helping the patient stay healthy and active. Treatment cannot fix lung scarring that has already occurred.
4. Idiopathic pulmonary fibrosis is a progressive, life-threatening, interstitial lung disease of unknown etiology.
5. The median survival rate of patients with IPF and RBI-LD is two to three years.
I feel like a record with a scratch that keeps repeating the same ten seconds or so.
And yet, there's clearly a lesson I keep banging my head against but don't seem to fully absorb.
I make poor decisions and/or choices when I'm tired. It's like the closer I get to running empty, the more I try to force myself to do, even if I'm shaking with exhaustion (like today).
I have tried several times to nap today to no avail. I have no idea how my body is even still sitting in the upright position. I have been up since 2 A.M. with no signs of sleep anywhere. Tonight, my husband returns to work after his vacation...hopefully, this won't be another reason I cannot sleep.
I can only expect that the reason I have not been able to sleep much over the last fourteen days is that my doctor put me back on Prednisone. Today was my last day. Good riddance once again! I will have to be on steroids off and on for the rest of my life...but let's celebrate the in between times, shall we?
This afternoon was such a blur (thanks to my exhaustion and brain fog). I have been forgetting things more often and I have also been experiencing extremely painful headaches. I am losing some of my hearing in the right ear (it feels like it's full of water, then it releases the pressure, then fills back up). And, my right eye hurts even when I blink. I am pretty sure these are all things I need to bring up to my oncologist the next time I go. I canceled today's appointment because I simply wasn't feeling good enough to sit in a doctor's office for hours on end. I will go see Dr. Roque on Tuesday. Believe me, I have so much to tell her.
The lesson I seem to be having trouble learning is to pay attention to my body and stop, or at least slow down, when it's clear that I've overextended myself energy wise or if I am headed in that direction. Instead, it's almost like I decide subconsciously that, "Ooh! I'm clearly headed for being bed-and/or couch bound again, so I better try and get as many things crossed off my list as possible before that happens! Hurry up! Do more, because you don't know when you'll be able to do XYZ again!"
Oh, and the other thing I do when my brain starts misfiring because I need to go to sleep for a day or three? Yeah, I ramble. Kind of like this blog post.
I can be a bit of a pessimistic curmudgeon on my best days, and it's way too easy to slip into a pity party for myself about the impact my debilitating lung disease/cancer has had on my life over the past year.
I don't believe in always being cheerful (remember, I'm a realist) when I feel like life sucks, so I try to give myself the space to express my feelings (and thanks to everyone who reads my blog, since this is the second most place I express those!) for a day or two, and then work on cheering myself up again, or if that's too big a stretch, to find a way to feel hopeful again.
I'm sure I'm not alone since depression often goes hand-in-hand with illness and disability.
So, what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and give you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?
For me, sometimes it requires getting a reality check to remind myself that however lousy my diseases are, there are people out there who are coping (better) with much more than I do. Sometimes it's as easy as getting to snuggle with my kiddos or my husband. Often, very often, it's reading books and/or blogs by people who have dealt with these kinds of life-altering changes illness forces. And chocolate chip cookies always helps (at least until it hits my hips).
Meanwhile I will post a list of life's lessons that I have learned that always helps to cheer me up:
1. The shirt I'm wearing stains easily; I have fed a baby (or three).
2. The quickest way to learn if planes are taking off right on time is to arrive at the gate three minutes late.
3. Not getting what I want is sometimes the best thing that can happen to me.
4. Actions don't always speak louder than words. Ever watched a mime perform?
5. The most becoming thing I can wear is a smile.
6. If it weren't for the last minute, I'd never get anything done.
7. When everything's coming my way, I'm probably in the wrong lane.
8. The words I used yesterday weren't very sweet: Today, I had to eat them.
9. The quickest way to find out if a misplaced cell phone is gone for good is to buy a new one.
10. Being kind is more important than being right.
11. It's okay to make mistakes, because only mediocre people are at their best all of the time.
Remember, God doesn't always choose to flatten the mountain...but He has promised to help you climb it.
Don't forget to participate in my blogs! I am asking 11 people to write a note and send it to my email address with the following:
- How did finding out the news that I have lung cancer affect you?
- Have I inspired you in any way?
- How do we know each other?
- What is your fondest memory of me?
- What do you enjoy the most about our friendship?
Love you all...mean it,
Shanna xoxoxo
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