I’m feeling quite accomplished today! I just went grocery shopping by myself for the first time in FOREVER! While the pic above doesn’t look like much (those bags were heavy) it was a lot for me. I had to stop to rest a lot, especially with bringing them inside the house, but I got it done! I handled it! Thanks to the warmer weather, I’m able to do more!
My husband made me cry Sunday afternoon by teaching me about drawing using perspectives, horizon lines and focal points. When the lesson was finished and I looked at what I did I started to cry. It felt good to learn something new and see progress, after months of not working and feeling like I’ve lost myself. On Sunday I felt a glimmer of something I didn’t even know was there. Who am I really? I was a social worker, went to school and obtained a master’s degree in the field. I worked and loved my job until having to leave. However,the last six months of being so sick, I haven’t felt like I’ve really done anything. Nor have I wanted to do anything. Now it’s time for me to learn all the things I’ve wanted to but never had “time”? Am I an artist? Maybe there is a Frida Kahlo hidden somewhere deep inside of me dying to get out? I am going to continue to learn and get my paints out again!
The iron infusions I have definitely helped me have more energy! I am less tired than before and no longer feel like need to nap every day. I do wear out easily still, so I need to remember pace myself. I have been very busy the past few weeks. I spent some time in Seattle for my son’s spring break. We had so much fun together! We hung out with family and went to the zoo. I was able to have some quality time with him just mom and son! We went to the aquarium, explored Pikes Place Market, and he ate all the sushi he could find. He is the kindest, smartest 13 y.o. I know! He takes such great care of me too. He didn’t complain once that I walk too slow or need to stop to rest. He reminds me to take my medications, offers to carry everything we have and will take my arm to help pull me up a hill. I am a very lucky mom to have a son like him! The best part of all of this is being able to spend this time with him!
When we returned, I FINALLY had my sleep study! I slept better than I thought I would with all the wires/electrodes attached to me! I won’t have the results for a bit but the sleep tech did tell me that I didn’t have any major “breathing events” and she did not think they would need to put me on a CPAP or BiPAP which would be amazing! Keeping my fingers crossed because I really do not want more machines in our room! I have an appo at UW again in May and hopefully, will have an idea where to go from here. Until then, I will just keep truckin’ along. Thanks for reading and for all the comments and support! They really help me get through!
I’ve been a childhood cancer “survivor” for 32 yrs. but did I survive it? I’m still dealing with the effects of the treatment, and it gave me PH and now heart failure. So what exactly did I survive? My illness just morphed into something else…a chronic illness. I’m not complaining even though it does sound like it. If I didn’t make it, I would have died at a very young age. I actually did die once. It was during a surgery, I became very hypokalemic and the surgeons told the staff to inform my family to call the priest to give me my last rights. I am not sure how old I was but I think I was four. I can remember “dying”. I was in the operating table. My eyes opened and I could see the surgeons, nurses, etc all looking at me. They were all gowned and gloved. I can still picture the room with all the sterilized shiny equipment. I began floating above my body but didn’t look at myself in the bed. I didn’t see any light but I just felt a signal that it wasn’t my time. I have no other memories of that day.
My grandma always talked to me about that day though. She said they called the priest to come. But she also called a Native American medicine man that she had been having me see as well. She wanted him there but he was out of town that day. She said that during the call he reassured her that I was going to be ok, that it wasn’t time. She was very upset but believed him. Next thing she knew, someone came out of the operating/recovery room and said I was doing well and asking for my grandpa (I was quite the grandpa’s girl)! Whenever my Grandma told me this story she would say how much of a miracle I am. A miracle…hmm I’m not sure about that. But I’m not sure I’m a “survivor” either. I’m just simply someone who has no other choice but to keep going. Putting one foot in front of the other, with a slower gait now, but I just keep going. I refuse to give up or give in to my struggles. I am not a quitter.
I’m getting so used to the oxygen cannula on my face, I barely notice it anymore. It’s part of me now. Still annoying most times but it helps. I had a friend who hasn’t seen me in a while ask if now I look like one of those “little old people carrying their oxygen around”? I can honestly say, no! I don’t look old, little, well that’s another issue! But I definitely don’t think I look old with my O’s. Guess that’s why it’s so shocking for people to see me. Strangers stare cause you don’t expect it. When I have it off I don’t look sick at all. Makes ya wonder how many others suffer some kind of chronic invisible illness they just don’t tell anyone about.
The past week is been rough, I just haven’t felt good since Sunday. I’ve had more shortness of breath, I haven’t been sleeping well and even though it sounds weird, I just feel like my heart is too big for my body. It’s hard to explain but it just beats too hard. Guess it’s disappointing that I’ve been feeling better the past month and now feel like shit again. I went to see my pulmonary htn doc. He sent me for an echo. Just heard that the echo was fine but there may be some fluid in my lungs. So had to go get a chest X-ray today. I tell ya, it’s a good thing I am not working cause having a chronic illness is a full time job in its self! Well, the X-ray checked out fine too. Which is all good, don’t get me wrong! I’m happy I just wish I knew what is causing the changes. Maybe it’s just the disease. It’s a tease when I feel good. Like I think that maybe I’ll feel good always. Kinda like you don’t really notice your teeth until you have a toothache.
In other news, I’ve decided this is the year of the concerts for me! So I’m looking for some shows for April to fill up that month hopefully in Portland! Let me know if you hear of anything!
Oh one last thing to throw a wrench in my emotions. When I saw my pulmonary doc he said he wanted to send my records to one more place regarding transplant. Remember my last post talked about getting turned down by three places and I made peace with it? Well, Dr. J went to a conference in San Diego recently and wants some of the cardiothoracic surgeons he met to take a look. It can’t hurt right? I honestly do not think the answer will be different but whatever. I also admire and love that he doesn’t want to give up. So yeah, of coarse I gave him the go ahead. Who knows, even if they say no about transplant, maybe they will have other options on treatment for me.
With all that I’ve been through in my life I’ve learned that no matter what, life is too short. So I’m doing my best to live in the moment. I try not to think ahead too much. I try not to look back, but put my attention on the here and now. So eat your dessert first, drink all the wine and go to every concert you desire!
Inhale breaths feel unsatisfying
Exhale just to inhale again
Continue on each day breathing
Beats pounding with blue hues
These are not the blues I find solace, those are your eyes
Well, it’s official. I have fully run out of options for a lung transplant. University of Utah finally got back to me last week. Fact is, I am just NOT a candidate. I have too much damage from radiation and was told that removing my lungs would be nearly impossible due to the scar tissue. Was I upset about this? Hell yes I was upset! I cried big ‘ole tears by myself. I wasn’t crying because I could not have a transplant though. Truth is, I wasn’t sure I would even want that. It’s a HUGE surgery, not to mention life long commitment, a lot of medications and risky thing to undergo in it’s self. I cried because I no longer have the option. My lungs will just continue to decline in function from here on out.
If you are wondering if I am depressed stop. I am not. I haven’t lost hope either. On the contrary, I have never been happier. I feel lucky to even be sitting here breathing. Overcoming childhood cancer and all of it’s struggles has taught me that there is no time like the present. After all, it could always be worse. I should have died many times before, in fact I did but I’ll save that story for another time.
This past three months have been interesting and a roller coaster of emotions but I am finally at peace. I am finally able to just relax and enjoy the moment and that in turn has made me feel great! Not having to struggle everyday to get to work has made a huge difference in my health. I can now take my time getting up, ensuring I am taking my medications regularly and eating right. I have the energy to do things I want to do and spend time with my friends and family. I have even felt good enough to take the dogs on short walks to the dog park with my oxygen in tow. I can rest all day and go see concerts in the evening and get into shenanigans again! 🙂 I am heading to Seattle this month to see Smashing Pumpkins, will see The Reverend Horton Heat next week and bought tickets to The Violent Femmes! So while I may struggle some days and my lungs are assholes, I still breathe!