Wednesday June 29.. D-day plus 12.. And just like that..

And then just like that, not a few hours after my last post yesterday, this came in with the mail...

 

It was from a dear sister in our congregation. And the timing couldn't have been more perfect. ....Jehovah always knows.... 

 

Proverbs 17:17 - "A true friend shows love at all times, and is a brother (or sister!) who is born for times of distress."

 

Proverbs 25:11 - "Like apples of gold in silver carvings is a word spoken at the right time."

 

2 Corinthians 1:3,4 - "Praised be the God and Father of our Lord Jesus Christ, the Father of tender mercies and the God of all comfort, who comforts us in all our trials..."

 

Tuesday June 28.. D-day plus 11.. Pull it together, Elizabeth, pull it together.

...I don't even know how I feel right now.. I'm so mentally drained.. Realistically things are good-- Antonio's appointment went well & things look good for him, my prognosis is good, we have what we need, & sure things are financially tight but we have been in much worse financial straits before, our family is happy.. What more could I ask for?.. So why can't I pull it together.. I'm tired.. I can't keep track of anything.. Even more so than usual I can't remember anything.. The little bit of organization that there was in my already-chaotic brain is completely shot.. I can't keep track of anything....... (See, that quickly I forgot that I just wrote that same sentence already)...... (No, that was not a joke, I'm just reading over what I wrote & discovered I'd written it twice...*sigh*)

...This cancer thing is always on my mind.. It looms over every single little thing.. It keeps me up at night.. It completely & overwhelmingly dominates my thoughts.. It's a monster inside that I want to claw out right this moment.. The surgery feels too far away,.. & yet it feels like I have such a limited period of time to organize everything that needs to be organized-- the garden (how long til I can weed it or plant in it after??, when will I have time to plant what's ready to go in now? what about my future planting schedule? what about harvest times?), the bills, the house, my pioneering (what avenues can I use in order to continue in the full-time ministry during my recovery? is it reasonable that I can do it?).. What about laundry? Grocery shopping? Work (oh how I should be working more right now as it is)? And oh so much more, it just won't let up..

...And of course I think about the surgery itself.. and all the unspoken what-ifs that come with that.. I still have those 2 quarreling sides of myself that have emerged since the diagnosis.. One is saying that everything is going to be fine.. I'm pretty sure that's the dominant one.. The other one feels the need to think of every Plan A-Z that could possibly happen in order to mentally prepare.. I've spent a lot of time talking to Jehovah about it all.. And yet sometimes my mind is so distracted over the last few days that I forget that I'm praying in the middle of it.. I always feel better after a deep prayer to Him, but I'm having a hard time pulling my thoughts together for a really good deep one the last few days.. I do try.. I'm grateful that the Bible promises He knows anyway, & His spirit can plead for us in our behalf.. What a wonderful God He is.. I yearn to talk to Him.. It's nice to know that even when you can't explain something well, He already knows, He knows you better than you know yourself, & appreciates that you're trying anyway..

...Our friends that came to visit on Friday & Sunday, & Antonio's friend that stayed through the full weekend, provided a nice distraction.. I find that good friends help keep things in perspective like being immersed in nature does,.. in a similar yet different way.. Without even trying, their presence & conversation, their own spoken worries & problems, the laughter & jokes, all reminds of the bigger picture.. The one where everything is chaotic & crazy for everyone in this world we live in, the one where everything in the end is promised to be ok.. This visit has been planned for months.. But I feel that Jehovah, knowing everything that was coming up, arranged for it to be on this exact weekend for that very reason..

...It helped my mental state tremendously that I had already told them before they came.. The elephant in the room was already unveiled.. It's such a huge elephant.. Unveiling it has been a bigger battle than I expected..

...And yet after they're gone, my mind takes over again.. Life kicks back in again.. My mind is chaotic & crazy again.. My mind exhausts me again.. Pull it together, Elizabeth, pull it together..

...Although we had a wonderful ministry morning Saturday, & a wonderful congregation meeting on Sunday, it was so hard for me to see & talk to congregation friends.. I don't know who does & doesn't know right now.. When they ask me 'How are you?', I don't know if they are asking in general or if it's more.. I find myself immediately saying, 'Good', & quickly skipping to asking & talking about them to keep the subject off of me.. If they know, I find myself not wanting them to think that 'me' is all I'll want to talk about.. And if they don't know, I don't know how to find a way to tell them.. "Hey, so guess what..", "So, we found out that I have cancer and..", there is no 'good' way, no way that isn't incredibly awkward.. Just the mere thought of trying to causes so much anxiety in me, an almost irrational amount of anxiety.. It's a huge elephant.. My mind exhausts me.. Pull it together, Elizabeth, pull it together..

Monday June 27.. Antonio's UVA Children's Hospital appointments..

...Another thing that has been on my mind almost all the time.. These appointments that we've been waiting for, for Antonio.. 3 appts at the UVA Children's Hospital that his cardiologist referred him to.. Specialists that are among the best in the country for heart rhythm issues & connective tissue disorders affecting the heart.. All I wanted was to hear good news.. We could use some good news right about now.. I would rather be the only one sick right now than my sweet darling Antonio too..

...It's been 3 months since he was sent from Urgent Care to the Emergency Room,.. 3 months since they told us to bypass the closest 2 hospitals & go to the next state to one with more state of the art equipment & pediatric specialists,.. since each EKG he received had questionable things on it,.. since the consulted cardiologist wanted to see him in his office,.. since the additional cardiological tests also showed questionable things,.. since the question arose of possible QT syndrome and/or Marfan's syndrome.. It's been 2 months & 2 weeks since the cardiologist called personally with his recommendation to refer Antonio to 2 specialists at the UVA Children's Hospital.. The specialists were kind enough to coordinate to arrange to see Antonio the same day, since we were coming from so far.. Because of that, the appointment took over 2 months to come.. And here it was..

...Similar to my thoughts & prayers in going to my own appointment just 1 week ago (has it really been that short amount of time?), I kept thinking & praying about all of the 'what ifs?'... of course the big ones,.. but also the small ones that were more about helping my sanity today than anything really important... We've felt optimistic about it, these appointments were precautionary, there was no definite diagnosis, & everything was just on even the border of a gray area, it may be nothing.. But still there was that chance.. And lately every time I'm optimistic about something, some sort of 'uncommon occurrence' slaps me in the face..

..Antonio had been saying he wasn't really nervous about it.. He kind of looked forward to the scientific & physical aspects of the tests.. So sweet & strong, my darling boy.. I pray he wasn't holding anything back with his feelings from me.. But as a teenager, I'm sure it's inevitable that he does...

...I was overwhelmed,.. & impressed.. The medical facilities around the UVA campus are extensive, with young medical students & doctors dressed in their scrubs walking around everywhere.. I don't know how we would've ever found the building, much less the office inside that building, or even parking, without the detailed instructions they'd sent to us.. GPS was moot once inside the area..

...The 6th floor office had a wall of windows overlooking the mountains.. I thought, 'if you have to be in or work in a hospital, what a beautiful peaceful view to look at'.. I've often felt the size of my anxieties or problems seem to be brought into a smaller perspective by throwing myself into & being absorbed by nature.. And looking at these mountains did the same.. We are all tiny, in amongst a much bigger picture, one where everything in the end is promised by Jehovah, 'who cannot lie', to be ok,.. to be better than ok,.. to be perfect.. And I'm reminded that everything truly will be fine..

...I was impressed by the timeliness of the office.. 1:00 appt, 2:00 appt, 2:30 appt.. All of our Antonio's appointments were handled right on time, almost to the very minute.. He handled the 1:00 tests like a pro (where did this phenomenally strong young man come from?).. The 2:30 specialist even swapped & came in at 2:00 when the 2:00 specialist was running late w/ another patient.. He was young, cool & personable.. He sat on the patient table with Antonio & swung his legs a little.. He wore black & white polka dot socks.. He explained impossibly scientific things to us in ways that we actually understood.. And when he asked genetics questions, he had a tablet that he quickly made swipes on while barely even looking at it as if his hand was moving on its own accord without him even having to think about it,.. all in order to create a family tree, even as complicated as the one I was trying to explain (why do we have to have such an odd family tree situation..).. He had 2 interns with him.. I kept forgetting they were there.. They observed so quietly, & every now & then nodded.. They left with him as quietly & shyly as they came in.. While we waited on the other specialist, the  cool polka-dotted-socks one kept checking on us & asking if we were thirsty.. How nice is that..

...The second specialist was.. different.. He strolled in with his short & plump body, a little cocky, pulled up a chair, leaned back in it, & stuck his feet straight out in front of him, with his hands folded on his very swollen belly, like he was in an easy chair at home.. (Matt later said- 'how can a doctor who works with heart health be so out of shape..')(Antonio liked him a lot- he thought he was amusing..) The cool polka-dotted-socks doctor sat on the sink counter.. The 2 interns were back too.. 4 people in there all for Antonio.. Again, a little overwhelmed,.. & impressed.. Despite his demeanor, short-&-plump doctor explained things in terms easily understood too.. And both doctors seemed to respect each other.. We were impressed with how much they had educated themselves on Antonio's file.. So had the nurse who had administered Antonio's previous test.. We definitely felt comfortable we were in the right place..

...The good news is that they are pretty certain that QT syndrome can be ruled out.. at least for the time being.. It's a little tough with a tad of an incomplete family history on one side.. Marfan's syndrome cannot be completely diagnosed or ruled out at this point.. Genetic testing is an option.. But sometimes that raises more questions than provides answers.. They do recommend seeing an ophthalmologist (not an optometrist) to check his retinas for some of the other signs of Marfan's syndrome.. And Antonio will need to continue to see his cardiologist annually for heart ultrasounds to monitor & check for changes in his heart as he grows.. But at this point his heart is looking good.. And that is unlikely to change within just the next year before his next appointment with the cardiologist....

...Relief!.. Yet it still seems that complete relief likes to remain elusive.. Because there are always possibilities still hanging.. My mind exhausts me.. Still the 2 1/2 hr ride home felt lighter.. And I couldn't help but think that many of the parents there today likely have much less positive news.. I dozed off & on, on the way home.. I feel so overwhelmingly exhausted..

...Thankful to Jehovah.. Grateful for my reasonably healthy darling son.. Grateful for my husband reaching over to hold my hand while he drives.. One day at a time.. One moment at a time..

Friday June 24.. D-day plus 7.. Educate yourself.... please...

...My patience is already wearing thin.. Comparing a 20 minute office procedure for a few pre-cancerous cells, with full-blown cancer & surgery?.. Comparing a hysterectomy for female troubles, with being diagnosed with aggressive invasive cancer & & the sheer size of the amount of my insides they are removing?.. To make a statement on my type of cancer like, "Oh that's not bad at all, they can just scrape that out, right?".........

...I don't mind people sharing their stories.. And I don't underestimate the trauma of the procedures of having pre-cancerous cells removed, or having any kind of surgery, or any part of your insides removed.. I certainly wouldn't wish to have any of those things done, & would find it traumatic myself as well.. But to present it in a way that it is actually comparable... It's like comparing a knee scrape or stitches to actual knee replacement surgery.. You know, it's not the same thing just because it's the knee.... Educate yourself, please...

...I try to be objective.. And I try to keep it all in perspective.. Not many people know yet, & of the ones that do, it was a small minority that said anything like that. It's not like everyone has treated it that way.. And it's only out of ignorance that anything insensitive is generally said in the first place, not out of ill intent.. And besides, these kinds of things are said for the same reason that we asked the doctor some of the questions that we did-- if the usual progession of this type of cancer usually involves finding abnormal cells that just mayyyybe one day years down the road might turn into pre-cancerous cells, which are then taken care of with simple procedures before they can ever become cancer, then why is mine suddenly full-blown cancer with my first ever abnormal pap? I got paps regularly as I should. Always normal... This doesn't fit with the general understanding of cervical cancer.. So why then?......------->>> Because endocervical adenocarcinoma is more uncommon than the type that works the other way, the more 'commonly understood' way... Only 10% women who have cervical cancer have my type.. It starts deeper in the tissue, so paps simply cannot find it at its abnormal & pre-cancerous stages.. By the time it spreads to the surface cells that a pap can reach, it is already full-blown invasive cancer & far too late for any of those other things.... Yes, I am that uncommon 10% with this type of cancer.. I am additionally that uncommon 1% who had a cervical polyp that was malignant.. I am that uncommon statistic.. Someone has to be.. Yes I got regular paps.. No we are not overreacting.. Please, I beg you, educate yourself..

...Yes, I try to be objective.. But part of me wants to scream, another part of me wants to curl under the blankets & cry, another part of me wants no more people to find out at all.. because even though it is such a small amount of people who have said those kinds of things in comparison to the amount that know,.. I can't bear even 1 more person saying something like that.. I just can't bear it..

Thursday June 23.. Reactions, jokes, & time-warps...

...It's only been a few days, & already I'm exhausted of telling people.. And I've hardly had to tell anyone.. Antonio, my mom, a cousin who would inform the rest of my cousins & my aunt, a few friends that are like family & who I wouldn't want to find out another way.. But Matt has handled the bulk of informing.. But yet I'm more exhausted today than I feel like I've been the whole time (has it really been only 6 days since we found out? It feels like a lifetime).. The stress of anticipating a person's reaction kills me.. I mean, how do you bring something like that up?.. I hope the few people that have been told take the initiative to tell others for us.. That's less people that I have to tell personally.. My mind exhausts me..

...Yesterday, Matt & I were able to joke about it for the first time.. He had found a piece of nail polish I had peeled off in the shower.. He thought it was a whole toenail & set it aside & saved it.. When he cautiously asked me about it, I laughed so hard.. I grabbed my phone, mocking that I was looking something up & said, "You were probably like, (mock typing) 'Does cervical cancer cause toenails to fall off?'" And we both laughed & laughed.. It felt good.. It felt like a landmark event.. Even though it was only 5 days after the diagnosis, it had felt like an eternity.. It felt like an important stand-out moment to remember.. We had reached a point we could joke about it....... Now just 1 day later, that moment itself feels like a lifetime passed.. And I'm exhausted, & confused about my vast change in mindset.. What is it about cancer that warps time & thoughts so incredibly much?.... My mind exhausts me...

Tuesday June 21...The oncologist appointment..

...My oncologist has this framed poster in his office.. It's an ad for the hospital we went to see him in.. We think it's pretty awesome..

...Stage 1B.. A later Stage 1, but not yet Stage 2.. Radical hysterectomy (3x more taken out than even with a complete hysterectomy), along with a large extra margin of tissue & lymph node removal.. The lymph nodes will be sent away for testing.. When the doctor drew the border around what would be removed, it looked like they were taking a chunk the size of a big box out of me.. But yet all I can feel is pure relief.. Is that weird?..

...Inside I was a basketcase all day & the previous night.. What if something happens to the car on the way to the appointment & we miss it?.. What if there is terrible traffic & we miss it?.. What if there is a terribly long wait? I don't think I can handle that.. What if we don't find out anything at all, what if he just needs to run more tests & then we have to wait for those?.. I don't think I can handle that either.. We are supposed to tell Antonio today, what if we don't have anything further to tell him because we have to wait for additional tests?.. What if the doctor had a bad day & is rushed & misses something important?.. What if surgery is required & he is unwilling to honor my wishes regarding no blood transfusions?.. What if, what if, what if, what if.....  While waiting, a left the Bible tract about the future on a table.. I'm sure every single person that comes in here is wondering every moment about their future...

...Everything went more smoothly than I even could have imagined.. Every prayer was answered, even for the small things that were more about my mental sanity than of any real importance.. My prayers for the car making it there safely, for us not to run late, for traffic to be easy, for there not to be a long wait, for any tests that needed to be done to be able to be done the same day & for them to be as least intrusive & painful as possible.. my prayers for us to be given a Stage for it today & a plan, for the doctor to be nice, for him to be patient & unhurried.. my prayers for every necessary question to be thought of, & nothing missed.. my prayers for his reaction to the blood transfusion issue.. and that he would be able to 'read' him & know that his reaction on that issue, if a positive one, was indeed real & could be relied on.. and, even if he said he was overall fine with it, for my courage to specify, 'I need to hear that, even if something unexpected & drastic happens, you will stick to that & not under any circumstances give me blood'..

...The air was lighter on the way home.. I'm holding booklets & instructions on my surgery.. We talked about how we would tell Antonio, & then who we would tell next.. We talked about what we would do for dinner that night.. and then Antonio texted that he was making a delicious dinner of bacon, eggs, & toast.. My darling sweet Antonio, how did I get such a great kid, what would I ever do without him..

...I tried to present the news to him straightforwardly, yet positively.. He was frying bacon.. I tried to just make it brief.. I feel like lingering on a subject creates more worry.. Please, I just don't want my darling Antonio to worry.. He has had more stress & anxiety in his life than any person should ever have at his age.. He took it well.. As I'd suspected, he already had an inkling.. He's a smart & insightful 15-year-old, not much gets past him..

...Matt called his family, while I called my mom.. I tried to tell her the same way I told Antonio.. I needed to have a drink first.. I kept putting myself in her place, imagining how I would feel if Antonio told me something like that.. No matter how lightly & positively he tried to put it, inside I would be dying.. My mom has had more worry & stress than any person should ever have, too.. And in my past, I added tremendously to it.. Please let me not add more.. I just needed a drink first... As expected, she took it well.. She has always been good at being the stoic type whatever the news.. Like many things, I don't think I'll ever really know what she was thinking..

...Dinner was delicious.. We watched funny shows on Netflix.. We joked & laughed.. Things felt light.. It was a good night..

...Relief.. I'm having a huge chunk of myself removed in a few weeks, & all I can feel is relief.. I guess it's not weird- Matt said that he was so relieved to hear that news, & the news that then the prognosis was so good that tears almost fell several times.. My sweet man, what would I do without him by my side..

Monday June 20.. D-day plus 3.. Can we fast-forward..

...I want everything to fast-forward a little.. I want this appointment to be over with.. I want the answers it will bring.. Likely not all the answers, but at least more answers.. Can we please fast-forward to tonight?.. when the appointment is over.. when Antonio has been told already.. We've already agreed we are telling him today.. But how are we going to tell him?.. And what are we going to tell him?..

...Despite taking something to help me sleep last night, I couldn't fall asleep for hours.. What if there are additional painful invasive tests? (Please let the further tests be painless imaging tests only).. What if something happens with traffic or to the car on the way there & we miss the appointment & have to wait even longer?.. What if the oncologist hasn't looked at my information when we get there? What if he is having a bad day & is distracted & misses something? What if we forget to ask him an important question?.. If surgery is the answer, I'm fine with that, in fact I prefer it to long procedures & treatments that prolong everything.. If so, what if he isn't willing to operate without blood? Who do we turn to next?.. Matt & I each did our own separate additional research last night & compared notes, & are feeling pretty optimistic that it is early & curable..... What if we're wrong?.. I know that Jehovah will take care of all of that as it comes, but I just need to prepare myself.. I would rather prepare myself with all possibilities than to be caught off guard & surprised.. I hate being surprised.. As I poured my heart out to Jehovah in a long prayer, I felt immediate peace & calm.. Sometimes one needs to pray several times for that peace & calm to edge it's way in.. But not last night.. I felt it immediately, & felt that it was Jehovah's reminder that He was indeed there & wasn't going make me or us work these things out on our own.. I felt His extra reassurance.. I thanked him for the timing of everything,.. that I got a checkup when I did,.. that they did additional tests when they did just because I was a new patient, when I wasn't due for them yet.. that called me in for additional tests when they did, even though things were not generally 'off' enough to warrant additional tests just yet.. that when they called me in for more tests the week before the convention & I prayed to him about whether or not to accept an appointment before or after the convention, that He led me to choose an appointment after it,.. If I had accepted an appointment before, we would have been receiving the urgent call to come back for the results during the convention itself.. I thanked him that they called so quickly after receiving the results & that they scheduled me so quickly with a specialized oncologist (they had said the next available appointment after that one wasn't for several weeks later).. I feel Jehovah's hand in every aspect of it & I thanked him for that.. And for the unexplainable calm & peace I felt at that moment.. for the peace 'that surpasses all understanding' (Phillipians 4:7) that only He can provide..

...Matt encouraged me to try to sleep in this morning.. I needed it.. It turned out that his work scheduled for today didn't work out, so he was outside working on the car when I got up.. I went out in my robe to water my plants & to give him a good morning hug.. He gives the best hugs.. I was going to go back in to shower & start the day, but he was hoping we could talk.. He told me he wanted to make sure I wasn't holding anything back, but that he knew that I was.. I told him that I knew he was too.. We sat on the bumper of his trunk, in the cool morning air, facing the green of the trees and the honeysuckle & blackberry bushes, & had another talk like Saturday morning's.. We talked about our feelings with the appointment in a few hours, & about telling Antonio.. about the possibility of surgery or other different treatments.. We both still feel pretty optimistic I felt Jehovah's presence even in our conversation, & quietly thanked Him for that.. When we had talked for a while, & I was leaving to come back in to take a shower, as I was walking away, he said, "Thank you for talking."..... I hadn't realized that it meant that much to him that I talk about it.. I turned around & came back to put my arms around him.. Oh how I thank Jehovah for this man.. What would I do without Jehovah in my life?.. What would I do if I'd never met Matt & was going through this on my own with Antonio?.. What if I was married to someone who didn't know Jehovah, who was not a spiritual man?.. Thank you, Jehovah, so much.. I don't deserve all of Your amazing generous gifts..