...I feel like my life has been spent on the phone & in paperwork & hoop-jumping for the last week since moving my treatment to Johns Hopkins... It's a blessing to be there!.. but oh the phone calls, paperwork, & hoop-jumping...
...First, all the phone calls & paperwork faxing just for the appointment request for Johns Hopkins, period... Pre-op testing (updated bloodwork, EKG, & Xray) was fortunately done right before the evening we found out the information that made us choose to move hospitals.. Fortunately, this seemed to really help move things along w/ getting into Johns Hopkins-- we already had pathology reports & tests to send. And they've been able to use them.. But Dr Tanner also wanted to do a Pet scan to check for metastastasizing prior to the surgery- important in determining treatment after.. The hospital also required my actual pathology slides beforehand.. Since we are almost 2 hours away, they gave me paperwork & what seemed to be all a person could need to get these things accomplished, & first thing the next morning after my visit last week (has it only been 6 days ago??), I got right to work on the phone calls to get it done.... Um yeahhhhhhh, not so easy there, sister....
...After finding the closest location that performs Pet scans, I called with the information. The result? "A doctor's order is not enough, no matter how detailed. We have forms the doctor's office has to fill out. A patient can't request it themselves." Greeeeat. They also are only performed at that location on Tuesday's & Saturdays. So I called the doctor's assistant, who had said she was the person to call with ANY questions or problems, & left her a message w/ the problem & the contact information for who she needed to speak to.
...Ok, easy enough.. So after locating where the location & department is where pathology slides are tested & held for my primary care physician (it turns out to be a hospital 30 minutes away from my PCP office), I called with that information. The result? "A patient can't request pathology slides themselves, your doctor's office will have to call." Greeeeat. So I called yet again the doctor's assistant, & left a message about that. Ok. Well, we have time before the surgery right?...
...When I sat back & counted how many business days left until the surgery, I started to panic.. There were only 7.. And this has to be enough time to allow for mail time for the slides, & paperwork time for the Pet scan, & still enough time to then send the Pet results to the oncology office too,.. not to mention the time that it would take for the phone calls required in between, & who knew when the oncology office would be able to get to that?.... At Matt's suggestion, I called Dr. Tanner's assistant again, to see if there was anything I could do in the meantime.. I felt helpless.. And all the what-ifs started to creep in.... She hadn't called back by the end of the day..
...Did I mention that the former hospital started calling trying to pre-register me for my surgery?.. Oops! I still needed to actually cancel the other surgery & let that oncology office & Dr R know!... Well, at least that was something I could go ahead & do so I could feel like I was helping SOMEthing move along...
...So, the next day, Thursday July 14, the assistant called back & let me know that if they had my pathology reports, she could call the facility where the pathology slides were located & request them.. (Well then, why didn't they do that in the first place?.. But oh well now..).. As for the Pet scan issue, a nurse would have to handle that, so she would pass the information on... Ok, 6 business days until surgery now, to have whatever needs to be done for that done, the scan scheduled, & then read, & then sent to Dr Tanner... Ok, still possible right?..
...Later Thursday afternoon, a nurse called-- she had taken care of the paperwork for the scan! And I should be good to go to call the location back & make my appointment.. Fantastic! All of my worry for nothing!.. Right?.. Wrong.. I called the Pet scan location & was told that they had to call my insurance company to see if prior authorization was needed & they would get back to me.. (Sigh).. A few hours later & Dr Tanner's nurse called back & said that the Pet scan location had called her & said the insurance company did require a prior authorization before they would give me an appointment.. That takes about 2 business days.. That means, Monday at the earliest.. Again, they only do scans on Tuesdays & Saturdays.. The following Saturday would be too late for the scan to be read & the results to get back to Dr Tanner before the surgery... That leaves Tuesday as the one & only possible day for the scan.. What if it takes longer than 2 business days for the prior authorization?.. What if Tuesday is already booked solid?.. Prayers, prayers, & more prayers..
...In the meantime, Lindsay from Dr R's office called & left a message to confirm she got my message to cancel the surgery & to relay that Dr R hoped to talk to us personally-- he wanted to know if there was something they did wrong, something they could have done differently to keep me as a patient.. I was touched.. Then Dr R called personally & left a very touching message-- he wanted to know if we needed anything from them, if there was anything they could do to assist in my transition, & to wish us the best & God's blessing in our journey with this.. What surgeon calls & does that.. I was seriously so touched.. It was never a problem with their office at all.. It was a problem with the hospital's record & reputation on the blood issue.. I made sure to call back & relay that & thank them for their kindness..
...Finally this morning, another nurse called & everything had been completed & sent over to the Pet scan location.. Right on time!.. Pretty unusual in the medical field, what a relief!.. I called again & sure enough everything was good to go.. In the nick of time, I have an appointment for my Pet scan tomorrow afternoon-- my very last opportunity to have one in enough time for the results to be read & sent to Dr. Tanner... Once again, Jehovah, right on time... Why did I ever sweat?... Because my stupid mind exhausts me.. It likes to do that..
...I've had a MRI & a Cat scan before, never a Pet scan.... Well, obviously... Since they're for cancer... I can't eat past 7:30 tomorrow morning... and since my appointment is at 12:45 & will take 2-3 hours, I won't be able to eat again until early evening.. Well that should be fun.. H'angry anyone?.. I don't care, I'm just so grateful that it was able to be squeezed in!...
...So, I can rest easy tonight.. I'm sure I won't anyway, because of the nature of my exhausting mind... But at least one more thing checked off the list.. Why is the list still so long?... Ok, stop it Elizabeth, stop it.. One thing at a time, one moment at a time.. Remember Matthew 6:34- "Never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles."
...One day at a time, one moment at a time.. Just breathe.
Monday, July 18, 2016
Sheer adorableness...
Something I love about this time frame, as stressful & full of anxiety as it has been:
...I wrenched my back a bit trying to put someone's wheelchair into a car trunk... Matt says, "You shouldn't be doing things like that until this is taken care of & you are better. You don't want to make things worse."
...It was my grocery shopping day... Matt says, "I don't think you should go grocery shopping by yourself until this is taken care of & you are better. You don't want to make things worse."
...This has been the story of my life since the diagnosis... And I find it to be sheer adorableness.. I finally gently, but a tad sarcastically, smiled & asked, "So a pulled muscle can aggravate cancer?"... His reply? "Well, you never know!"...
...Yep sheer adorableness.. Some women might be offended at someone treating them in such a way. But I call it being a kind-hearted gentleman in every since of the word.. How can you not love it when someone loves you & wants to protect you that much..
...I wrenched my back a bit trying to put someone's wheelchair into a car trunk... Matt says, "You shouldn't be doing things like that until this is taken care of & you are better. You don't want to make things worse."
...It was my grocery shopping day... Matt says, "I don't think you should go grocery shopping by yourself until this is taken care of & you are better. You don't want to make things worse."
...This has been the story of my life since the diagnosis... And I find it to be sheer adorableness.. I finally gently, but a tad sarcastically, smiled & asked, "So a pulled muscle can aggravate cancer?"... His reply? "Well, you never know!"...
...Yep sheer adorableness.. Some women might be offended at someone treating them in such a way. But I call it being a kind-hearted gentleman in every since of the word.. How can you not love it when someone loves you & wants to protect you that much..
Friday, July 15, 2016
Wednesday July 13... And to even more miraculous destinations...
...Although we were so happy to be accepted into a place like Johns Hopkins, & so quickly, & have the bloodless team there on our side,.. questions still worried us- Will they still feel surgery is the answer? If not, what treatments are we going to have to deal with.. and if so, how far out must we wait for the surgery? Will there be more tests that require more wait time, & will they be painful, invasive?.. The unknown is always so scary.. Maybe that's also why I've always been afraid of the dark,.. and, despite that I lived near the ocean, & directly on creeks, rivers, & bays most of my life, afraid of swimming in large bodies water..
...We left much earlier than we needed to for the 1 hour 45 minute drive.. I prayed silently most of the way.. What if there was traffic? What if there was an accident? What if we couldn't find parking? What if something happened that caused us to miss this appointment? After all, it is downtown Baltimore.... And yep, traffic stunk. And yep, downtown Baltimore stunk. And yep, finding parking was stressful. And yep, you have to get in line at Johns Hopkins for a wrist band from security & maneuver that gigantic building & their high-tech (but cool!) check-in kiosks.. But we still got to where we needed to be with time to spare.. They even took us back early to my patient room.. Then I had a new set of worries-- Brother P. will be looking for us, they took us back before he & I were scheduled to meet.. Matt's forgot his snack & his blood sugar will be dropping.. And on & on.. And I of course had to look around & memorize every single pointless detail of the room.. My mind exhausts me.. When Matt & I weren't talking, I was praying.. Yes I even prayed for Matt's blood sugar..
...After the nurse took my vitals, a medical student came in to ask all the basic questions & enter my information into their computer system.. She was very familiar with the bloodless program.. That was reassuring.. And she was so sweet, so young & vibrant, cheery & full of life.. You might call her 'perky'.. It made Matt roll his eyes a little bit.. (probably just his blood sugar affecting his mood ;) ).. But I thought, what a breath of fresh air.. Everyone in the medical field should have that personality & exude that positivity..
...After some time, there was a knock at the door, & a nurse let in Brother P.. What a welcome sight to see a spiritual brother!.. No matter where you go, when you see one of your spiritual brothers or sisters, it is a comfort.. He was kind & lighthearted, he put us at ease.. Taking turns, the med student & Brother P. asked their needed questions.. Brother P appreciated that we had already done our homework, came in well-informed, & that I knew exactly what blood alternatives I would & would not accept,.. made his job easier & made things pretty quick.. I signed some paperwork & they both went on their way.. He'll continue to be part of the process through every appointment & the surgery..
...We waited for over an hour after that for the doctor.. Of course, true to my nature, I memorized every single detail of the room several times over, finding new things to subconsciously analyze each time.. We talked, held hands, rested our eyes, made jokes.. I said silent prayers several times over about my concerns.. We really couldn't complain about the wait- it was miraculous that they could fit us in next-day..
...The doctor & med student knocked (my heart jumped) & walked in.. We pretty much immediately liked him.. When we had received his name the day before, I had done some research on him- extremely impressive expertise,.. Yep, he's pretty much a total rawkstar... 'director of surgical innovations and the robotic surgery program'... 'a particular focus on developing innovative techniques for robotic surgery'... 'has co-authored more than 30 articles in peer-reviewed medical journals and has lectured nationally and internationally on sentinel lymph node techniques, uterine sarcoma and surgical innovations'...... Just a few tidbits of his insane levels of expertise- on his Johns Hopkins profile, you'll be scrolling forever through his qualifications, honors, publishings, etc. How in the world did they get us in to this guy next-day!... But impressive expertise doesn't mean you will automatically actually like the doctor's manner.. Well, we liked his manner too.. Young, fresh, detailed, knowledgeable, serious yet lighthearted in his manner of speaking, talks to you respectfully yet in a manner that you feel like you already know him, unrushed, attentive, thorough..
...New surgery date July 25... Same surgery, still removing just as much, but different technique, & additional ingenius precautionary measures that will ensure that nothing at all is missed & that will be better for my health if I should need radiation after, or even at anytime in the rest of my life.. Did I mention I'll get to say I've had robotic surgery?.. You see that surgery robot thingy in the picture there, where he's at the controls & the robot itself is at the table behind him where it would actually do the surgery? Yeah, that's mine... Dr Edward J Tanner. Look him up. Rawkstar.
...We walked out of their feeling so much more informed & prepared.. He's still performing a radical hysterectomy (removing my uterus, cervis, upper vagina, parametria, fallopian tubes (ovarian cancer starts in the fallopian tubes- remove the tubes, remove the possibility of ovarian cancer without removing the ovaries themselves for no reason, & therefore keep the hormonal & cardiovascular benefits of them- who knew!), & lymph nodes, & additionally performing an ovarian transposition (moving one of my ovaries up out of the pelvic region- in the case I should need radiation after, or ever throughout the rest of my life, that ovary will be clear of it & will remain saved), & additionally performing sentinel lymph node mapping (a new & cutting edge technique that only 3 hospitals currently have available (wow!) in which, before removing the lymph nodes, they can identify which ones were at risk of the cancer spreading to first in order for those to be more closely tested to make sure that absolutely no cancer is missed).. He also ordered a Pet scan to make sure in advance that the cancer has not metastasized anywhere else. Fortunately I had already had my pre-op testing done (ekg, bloodwork, xray) as ordered by my former oncologist Dr R, so they could already use everything I had.. How did we get this magnitude of a blessing of everything coming together this wonderfully!..
...He was respectful of our beliefs & my non-negotiable bloodless choice.. It is a make-or-break for me.. No exceptions.. I think changing doctors & hospitals proves that.. He believes that as long as a patient is informed of what their choice actually means, the risks & benefits, he whole-heartedly supports their choice.. Well, when a patient who has never been in the medical field walks in already knowing what things like hemodilution, cell savage, blood fraction types, etc, are, I'd say we could reassure him we are fully informed.. We are grateful to have been given a hospital that cares more about their patients' choices than their own..
...So, a sooner surgery, less invasive, more precise than even laproscopic, better recovery time, shorter hospital stay, a surgery type with practically no blood loss, the assistance of an entire bloodless surgery team, getting a next-day appointment into an impossible-to-get-into-in-less-than-several-weeks-minimum hospital that happens to be ranked the 3rd best in the entire nation, getting assigned to truly what seems to be the best possible & most qualified oncology surgeon EVER... In addition to the sheer impossible timing of finding & diagnosing the cancer.. We feel so amazingly taken care of by our amazing God Jehovah, there is NO other possible way that this could have all come together, & so quickly, & so perfectly.. So many 'impossibles' made possible.. And when we took our stand on an issue of faith,.. the outcomes have been simply even more miraculous.. Feeling so so so taken care of & watched over.. & grateful..
...Yes, I am sitting here with cancer & I'm grateful..
--Psalm 23:1, 4-- "Jehovah is my Shepherd. I shall lack nothing... Though I walk in the valley of deep shadow, I fear no harm, for you are with me..."
--Psalm 31:3-- "For you are my crag and my stronghold; For the sake of your name, you will lead me and guide me."
--Matthew 6:27, 32b,33-- "Who of you by being anxious can add one cubit to his life span?..Your heavenly Father knows that you need all these things. Keep on, then, seeking first the Kingdom and his righteousness, and all these other things will be added to you."
...We left much earlier than we needed to for the 1 hour 45 minute drive.. I prayed silently most of the way.. What if there was traffic? What if there was an accident? What if we couldn't find parking? What if something happened that caused us to miss this appointment? After all, it is downtown Baltimore.... And yep, traffic stunk. And yep, downtown Baltimore stunk. And yep, finding parking was stressful. And yep, you have to get in line at Johns Hopkins for a wrist band from security & maneuver that gigantic building & their high-tech (but cool!) check-in kiosks.. But we still got to where we needed to be with time to spare.. They even took us back early to my patient room.. Then I had a new set of worries-- Brother P. will be looking for us, they took us back before he & I were scheduled to meet.. Matt's forgot his snack & his blood sugar will be dropping.. And on & on.. And I of course had to look around & memorize every single pointless detail of the room.. My mind exhausts me.. When Matt & I weren't talking, I was praying.. Yes I even prayed for Matt's blood sugar..
...After the nurse took my vitals, a medical student came in to ask all the basic questions & enter my information into their computer system.. She was very familiar with the bloodless program.. That was reassuring.. And she was so sweet, so young & vibrant, cheery & full of life.. You might call her 'perky'.. It made Matt roll his eyes a little bit.. (probably just his blood sugar affecting his mood ;) ).. But I thought, what a breath of fresh air.. Everyone in the medical field should have that personality & exude that positivity..
...After some time, there was a knock at the door, & a nurse let in Brother P.. What a welcome sight to see a spiritual brother!.. No matter where you go, when you see one of your spiritual brothers or sisters, it is a comfort.. He was kind & lighthearted, he put us at ease.. Taking turns, the med student & Brother P. asked their needed questions.. Brother P appreciated that we had already done our homework, came in well-informed, & that I knew exactly what blood alternatives I would & would not accept,.. made his job easier & made things pretty quick.. I signed some paperwork & they both went on their way.. He'll continue to be part of the process through every appointment & the surgery..
...We waited for over an hour after that for the doctor.. Of course, true to my nature, I memorized every single detail of the room several times over, finding new things to subconsciously analyze each time.. We talked, held hands, rested our eyes, made jokes.. I said silent prayers several times over about my concerns.. We really couldn't complain about the wait- it was miraculous that they could fit us in next-day..
...The doctor & med student knocked (my heart jumped) & walked in.. We pretty much immediately liked him.. When we had received his name the day before, I had done some research on him- extremely impressive expertise,.. Yep, he's pretty much a total rawkstar... 'director of surgical innovations and the robotic surgery program'... 'a particular focus on developing innovative techniques for robotic surgery'... 'has co-authored more than 30 articles in peer-reviewed medical journals and has lectured nationally and internationally on sentinel lymph node techniques, uterine sarcoma and surgical innovations'...... Just a few tidbits of his insane levels of expertise- on his Johns Hopkins profile, you'll be scrolling forever through his qualifications, honors, publishings, etc. How in the world did they get us in to this guy next-day!... But impressive expertise doesn't mean you will automatically actually like the doctor's manner.. Well, we liked his manner too.. Young, fresh, detailed, knowledgeable, serious yet lighthearted in his manner of speaking, talks to you respectfully yet in a manner that you feel like you already know him, unrushed, attentive, thorough..
...New surgery date July 25... Same surgery, still removing just as much, but different technique, & additional ingenius precautionary measures that will ensure that nothing at all is missed & that will be better for my health if I should need radiation after, or even at anytime in the rest of my life.. Did I mention I'll get to say I've had robotic surgery?.. You see that surgery robot thingy in the picture there, where he's at the controls & the robot itself is at the table behind him where it would actually do the surgery? Yeah, that's mine... Dr Edward J Tanner. Look him up. Rawkstar.
...We walked out of their feeling so much more informed & prepared.. He's still performing a radical hysterectomy (removing my uterus, cervis, upper vagina, parametria, fallopian tubes (ovarian cancer starts in the fallopian tubes- remove the tubes, remove the possibility of ovarian cancer without removing the ovaries themselves for no reason, & therefore keep the hormonal & cardiovascular benefits of them- who knew!), & lymph nodes, & additionally performing an ovarian transposition (moving one of my ovaries up out of the pelvic region- in the case I should need radiation after, or ever throughout the rest of my life, that ovary will be clear of it & will remain saved), & additionally performing sentinel lymph node mapping (a new & cutting edge technique that only 3 hospitals currently have available (wow!) in which, before removing the lymph nodes, they can identify which ones were at risk of the cancer spreading to first in order for those to be more closely tested to make sure that absolutely no cancer is missed).. He also ordered a Pet scan to make sure in advance that the cancer has not metastasized anywhere else. Fortunately I had already had my pre-op testing done (ekg, bloodwork, xray) as ordered by my former oncologist Dr R, so they could already use everything I had.. How did we get this magnitude of a blessing of everything coming together this wonderfully!..
...He was respectful of our beliefs & my non-negotiable bloodless choice.. It is a make-or-break for me.. No exceptions.. I think changing doctors & hospitals proves that.. He believes that as long as a patient is informed of what their choice actually means, the risks & benefits, he whole-heartedly supports their choice.. Well, when a patient who has never been in the medical field walks in already knowing what things like hemodilution, cell savage, blood fraction types, etc, are, I'd say we could reassure him we are fully informed.. We are grateful to have been given a hospital that cares more about their patients' choices than their own..
...So, a sooner surgery, less invasive, more precise than even laproscopic, better recovery time, shorter hospital stay, a surgery type with practically no blood loss, the assistance of an entire bloodless surgery team, getting a next-day appointment into an impossible-to-get-into-in-less-than-several-weeks-minimum hospital that happens to be ranked the 3rd best in the entire nation, getting assigned to truly what seems to be the best possible & most qualified oncology surgeon EVER... In addition to the sheer impossible timing of finding & diagnosing the cancer.. We feel so amazingly taken care of by our amazing God Jehovah, there is NO other possible way that this could have all come together, & so quickly, & so perfectly.. So many 'impossibles' made possible.. And when we took our stand on an issue of faith,.. the outcomes have been simply even more miraculous.. Feeling so so so taken care of & watched over.. & grateful..
...Yes, I am sitting here with cancer & I'm grateful..
--Psalm 23:1, 4-- "Jehovah is my Shepherd. I shall lack nothing... Though I walk in the valley of deep shadow, I fear no harm, for you are with me..."
--Psalm 31:3-- "For you are my crag and my stronghold; For the sake of your name, you will lead me and guide me."
--Matthew 6:27, 32b,33-- "Who of you by being anxious can add one cubit to his life span?..Your heavenly Father knows that you need all these things. Keep on, then, seeking first the Kingdom and his righteousness, and all these other things will be added to you."
Wednesday, July 13, 2016
Monday July 11... Rough roads to miraculous destinations...
...Where to even start.. What a eventful past few days.. From panic, to defeat, to more panic,..... to miracle after miracle..
...Last Thursday evening we found out through the Hospital Liason Committee that the hospital my surgery was scheduled to be at did not have a good record with maintaining patient wishes for bloodless surgery (100% non-negotiable in my book!).. When Matt told me when we were laying in bed in the dark, my heart crumpled.. I felt so defeated, so lost.. And I cried.. I've wanted to so hard to put on a brave face for my family, but that was too much for me.. What would we do?.. Where would we go?.. How long would it take to get in somewhere else?.. How much later would my surgery be pushed?.. How can I go through this whole process, & potentially all the tests, all over again.. Matt so sweetly held me, caressed my face, rubbed my hair.. No one was telling us to leave that hospital, & therefore that oncologist as well.. But it was not worth the risk to me.. We would have to start over....
...We would be receiving a list of recommended hospitals with bloodless programs to try.. Top of the list was Johns Hopkins.. I couldn't sleep that night.. I poured my heart out in prayer.. The next morning, long before I needed to be up to get ready for the ministry, not being able to sleep anyway, I researched their oncology teams & how to get an appointment.. I anticipated a long wait.. I mean, it's Johns Hopkins, it's in the top 3 hospitals in the nation, people come over even internationally to be there.. Nevertheless, we started the appointment request process Friday afternoon..
...The first person I spoke with was kind enough to expedite the process over to a medical concierge immediately due to the circumstances, when normally it would have taken days to even get that far... And she suggested I started sending in my paperwork- medical records, pathology reports, insurance.. Even with the kindness of her expediting thus far, there is a process.. Once received by the medical concierge assigned to my case, the paperwork then has to be sent for physician review to determine what the next step should be.. I would hear back with an 'update' on Monday.. Would they even accept me?.. If so, how long would we have to wait for an appointment?.. How many hoops will be there be?.. We prayed specifically for a quick acceptance & quick appointment, specifically one for the following week..
...That night we received a phone number & name from the Liason Committee for the Director of the Bloodless Program at Johns Hopkins.. He also happens to be one of our spiritual brothers- what a wonderful & reassuring thing!.. So, first thing Saturday morning we called & left a message.. Nothing else to do but wait & pray..
...He called this morning.. Hilariously, he & his wife were just on vacation last week in none other than right here in our county.. What a great ice breaker.. and reminder of what a small world we live in.. He was so kind, so understanding.. He asked some questions, took down some information.. & gave me his cell phone # in order to stay in the loop & so that I could immediately text him an appointment day when I received it & he would arrange to meet in person at the time of my appointment.. "'WHEN' I received it" sounded promising!.. And although I felt immediately better after talking to him, my heart fell a little bit.. I had hoped that he could expedite the process.. When I asked him how long we could anticipate to wait for an appointment, the earliest would be about 2 weeks.. Not the worst in the world, but not ideal.. Any earlier was pretty much unheard of.. Matt & I continued to pray with our concerns..
...Within hours I received a phone call from the medical concierge on our case... She had an appointment for me....... TOMORROW...... How was this possible! A NEXT DAY appointment at Johns Hopkins??... I immediately called Matt.. He said it almost made him cry.. The impossible!.. Funny thing- I've never been so happy to hear I was going to the doctor in my whole life...
...I texted the bloodless program director, Brother P. ... I knew it would be last minute for him.. With his no-doubt busy schedule, how much would he have to rearrange in order to meet as planned? Especially when so unexpected?..
-Him: "Wow that was fast. I'll see you tomorrow about half hour before the appointment. I'll find you. Terrific heavenly direction!"
-Me: "So thankful & amazed... See you tomorrow! I know it's last minute for you, so thank you."
-Him: "Never an imposition for my sister."
...The events of these whole few days wrapped up into 2 scriptures...
-Matthew 19:26- "Looking at them intently, Jesus said to them: "With men this is impossible, but with God all things are possible."
-John 13:35- "By this all will know that you are my disciples- if you have love among yourselves."
...Last Thursday evening we found out through the Hospital Liason Committee that the hospital my surgery was scheduled to be at did not have a good record with maintaining patient wishes for bloodless surgery (100% non-negotiable in my book!).. When Matt told me when we were laying in bed in the dark, my heart crumpled.. I felt so defeated, so lost.. And I cried.. I've wanted to so hard to put on a brave face for my family, but that was too much for me.. What would we do?.. Where would we go?.. How long would it take to get in somewhere else?.. How much later would my surgery be pushed?.. How can I go through this whole process, & potentially all the tests, all over again.. Matt so sweetly held me, caressed my face, rubbed my hair.. No one was telling us to leave that hospital, & therefore that oncologist as well.. But it was not worth the risk to me.. We would have to start over....
...We would be receiving a list of recommended hospitals with bloodless programs to try.. Top of the list was Johns Hopkins.. I couldn't sleep that night.. I poured my heart out in prayer.. The next morning, long before I needed to be up to get ready for the ministry, not being able to sleep anyway, I researched their oncology teams & how to get an appointment.. I anticipated a long wait.. I mean, it's Johns Hopkins, it's in the top 3 hospitals in the nation, people come over even internationally to be there.. Nevertheless, we started the appointment request process Friday afternoon..
...The first person I spoke with was kind enough to expedite the process over to a medical concierge immediately due to the circumstances, when normally it would have taken days to even get that far... And she suggested I started sending in my paperwork- medical records, pathology reports, insurance.. Even with the kindness of her expediting thus far, there is a process.. Once received by the medical concierge assigned to my case, the paperwork then has to be sent for physician review to determine what the next step should be.. I would hear back with an 'update' on Monday.. Would they even accept me?.. If so, how long would we have to wait for an appointment?.. How many hoops will be there be?.. We prayed specifically for a quick acceptance & quick appointment, specifically one for the following week..
...That night we received a phone number & name from the Liason Committee for the Director of the Bloodless Program at Johns Hopkins.. He also happens to be one of our spiritual brothers- what a wonderful & reassuring thing!.. So, first thing Saturday morning we called & left a message.. Nothing else to do but wait & pray..
...He called this morning.. Hilariously, he & his wife were just on vacation last week in none other than right here in our county.. What a great ice breaker.. and reminder of what a small world we live in.. He was so kind, so understanding.. He asked some questions, took down some information.. & gave me his cell phone # in order to stay in the loop & so that I could immediately text him an appointment day when I received it & he would arrange to meet in person at the time of my appointment.. "'WHEN' I received it" sounded promising!.. And although I felt immediately better after talking to him, my heart fell a little bit.. I had hoped that he could expedite the process.. When I asked him how long we could anticipate to wait for an appointment, the earliest would be about 2 weeks.. Not the worst in the world, but not ideal.. Any earlier was pretty much unheard of.. Matt & I continued to pray with our concerns..
...Within hours I received a phone call from the medical concierge on our case... She had an appointment for me....... TOMORROW...... How was this possible! A NEXT DAY appointment at Johns Hopkins??... I immediately called Matt.. He said it almost made him cry.. The impossible!.. Funny thing- I've never been so happy to hear I was going to the doctor in my whole life...
...I texted the bloodless program director, Brother P. ... I knew it would be last minute for him.. With his no-doubt busy schedule, how much would he have to rearrange in order to meet as planned? Especially when so unexpected?..
-Him: "Wow that was fast. I'll see you tomorrow about half hour before the appointment. I'll find you. Terrific heavenly direction!"
-Me: "So thankful & amazed... See you tomorrow! I know it's last minute for you, so thank you."
-Him: "Never an imposition for my sister."
...The events of these whole few days wrapped up into 2 scriptures...
-Matthew 19:26- "Looking at them intently, Jesus said to them: "With men this is impossible, but with God all things are possible."
-John 13:35- "By this all will know that you are my disciples- if you have love among yourselves."
Wednesday, July 6, 2016
Wednesday July 6... D-day plus 2 weeks & 5 days... Surgery minus 3 weeks & 2 days
...Matt worries about the cancer spreading while waiting for the surgery.. I do too, but try not to think about it.. It's those 2 battling halves of myself again that initially emerged after receiving the news.. One half worries, analyzes, & replays every scenario that has happened & that possibly could happen,.. & the other half tries to reason & reassure.. I tell myself that my oncologist is the expert.. I tell myself that maybe this is how much time was needed in order to build up my blood count as he requested.. I tell myself that the timing of everything thus far has been nothing short of miraculous, so why shouldn't the surgery date be any different..
...I had a small list of things to ask when I called Lindsey at the oncologist's office today.. She had given me her personal line to call if I had any questions.. Almost 3 weeks in & this is only the 2nd time I've used it.. I think that's pretty good, all things considered.. 1)We want my blood counts from my most recent CBC 2 weeks ago for the Hospital Liason Committee.. 2)Matt wants to stay overnights in the hospital with me- is that allowed? Does the hospital room furniture allow? 3)What is the chance of the cancer spreading while waiting for surgery?.. Matt didn't want to hold off on that answer..
..."Everybody is different, Dr R will be able to tell when he gets in if it has spread, but that usually doesn't happen".. Safe answer.. They just don't know.. We can ask every day all day, but the truth is they really don't know.. Back to what Dr R said in his office at our initial visit.. All the 'ifs'.. He was optimistic, but the truth is that everything right now, even the staging, is purely assumptive.. They really have no idea until they operate & then also until the lymph nodes are tested after how far along this is..
...My lymphocytes are also off.. "Could indicate an infection, or that the immune system is not at top notch right now,.. or could be nothing, the numbers weren't that off to be concerned"... My lymphocytes were off at my initial checkup with my primary care doc 2 months ago, too... I want to take those words at face value & move on but, that's what I did with all the sequential tests that kept coming back that 'weren't that off' but that they fortunately kept 'just in case' following through with which miraculously found the cancer.. So I'm afraid to take anything at face value right now.. We've been so optimistic.. I'm almost afraid to be overly-so.. Where is the right balance?...
...Matt is able to stay overnights with me at the hospital after surgery.. And "there is a recliner in the room that is not the most comfortable, but is 'sleepable'".. The only definite answers that can be given on anything right now.. Fast-forwarding would sure be nice right now.. Waiting is hard.. Every night I fall asleep to imaginings of myself waking up in the recovery room to see Matt's face & what he will tell me.. Every night..
...Optimism is still at the forefront..But the truth is that no one knows.. The truth is everything is hopeful assumptions right now.. I of course hope they're right, but I also oddly feel at peace right now with whatever may happen.. Because nothing in this world's system is lasting.. And Jehovah always has & always will make sure that everything & everyone is ok aside of that.. But I just wish I could know what those 'happenings' will be..
...I had a small list of things to ask when I called Lindsey at the oncologist's office today.. She had given me her personal line to call if I had any questions.. Almost 3 weeks in & this is only the 2nd time I've used it.. I think that's pretty good, all things considered.. 1)We want my blood counts from my most recent CBC 2 weeks ago for the Hospital Liason Committee.. 2)Matt wants to stay overnights in the hospital with me- is that allowed? Does the hospital room furniture allow? 3)What is the chance of the cancer spreading while waiting for surgery?.. Matt didn't want to hold off on that answer..
..."Everybody is different, Dr R will be able to tell when he gets in if it has spread, but that usually doesn't happen".. Safe answer.. They just don't know.. We can ask every day all day, but the truth is they really don't know.. Back to what Dr R said in his office at our initial visit.. All the 'ifs'.. He was optimistic, but the truth is that everything right now, even the staging, is purely assumptive.. They really have no idea until they operate & then also until the lymph nodes are tested after how far along this is..
...My lymphocytes are also off.. "Could indicate an infection, or that the immune system is not at top notch right now,.. or could be nothing, the numbers weren't that off to be concerned"... My lymphocytes were off at my initial checkup with my primary care doc 2 months ago, too... I want to take those words at face value & move on but, that's what I did with all the sequential tests that kept coming back that 'weren't that off' but that they fortunately kept 'just in case' following through with which miraculously found the cancer.. So I'm afraid to take anything at face value right now.. We've been so optimistic.. I'm almost afraid to be overly-so.. Where is the right balance?...
...Matt is able to stay overnights with me at the hospital after surgery.. And "there is a recliner in the room that is not the most comfortable, but is 'sleepable'".. The only definite answers that can be given on anything right now.. Fast-forwarding would sure be nice right now.. Waiting is hard.. Every night I fall asleep to imaginings of myself waking up in the recovery room to see Matt's face & what he will tell me.. Every night..
...Optimism is still at the forefront..But the truth is that no one knows.. The truth is everything is hopeful assumptions right now.. I of course hope they're right, but I also oddly feel at peace right now with whatever may happen.. Because nothing in this world's system is lasting.. And Jehovah always has & always will make sure that everything & everyone is ok aside of that.. But I just wish I could know what those 'happenings' will be..
Monday, July 4, 2016
.. Rollercoaster rides..
.. I feel like I'm on an emotional nightmare ride.. Up, down, around, forwards, backwards, upside down.. I love roller coasters,.. but this is enough to make a person sick.. I can't remember the last time I was this ridiculously emotionally unstable.. What is wrong with my stupid broken emotions..
...Friday was a hard day, a negative day.. As quickly as I'd been brought up emotionally the day before, I was kicked in the gut again & again yesterday.. Drowning, barely keeping my head above water.. I felt so defeated.. My mind knew that everything will be ok, but my heart wouldn't listen.. Everything seemed impossible.. You know those days where nothing seems to go right?.. That was Friday.. x 1,000,000..
...2 elders had pre-arranged to come over Saturday for encouragement.. It couldn't have been better timing.. They had tried to arrange to come over last weekend, but Matt had forgotten to tell me, so it was moved to this weekend.. I'm so glad.. And I don't think it was by accident.. I need it so much more right now than I did last weekend.. Funny, how Jehovah can even use forgetfulness in order to give us what we emotionally need when we need it.. I love how much He knows us better than we know ourselves, so much so that He can see where our emotions will be in advance & is already maneuvering things to give you what you need before you even know that you will need it..
...Our wonderful spiritual brothers are always able to put things in perspective, share the right scriptures,.. and still make you laugh.. all at the same time.. They could have been with their families, or enjoying needed relaxation time, but they selflessly chose to come see us & encourage us.. They are coordinating with the Hospital Liason Committee in Md, since that is where my surgery will be & that committee handles that hospital.. It's amazing to me how much work these brothers are putting in for us to make sure that everything runs smoothly, they are incredibly organized.. both the brothers here & the ones in Md that have not yet even met us.. All for us.. It gives me even more appreciation for Jehovah's vast organization, for Jesus' loving & diligent care of his congregations, & for our united brotherhood.. I feel so loved, treasured, & protected..
Isaiah 40:11- "Like a shepherd he will care for his flock. With his arm he will gather together the lambs, and in his bosom he will carry them.."
...Friday was a hard day, a negative day.. As quickly as I'd been brought up emotionally the day before, I was kicked in the gut again & again yesterday.. Drowning, barely keeping my head above water.. I felt so defeated.. My mind knew that everything will be ok, but my heart wouldn't listen.. Everything seemed impossible.. You know those days where nothing seems to go right?.. That was Friday.. x 1,000,000..
...2 elders had pre-arranged to come over Saturday for encouragement.. It couldn't have been better timing.. They had tried to arrange to come over last weekend, but Matt had forgotten to tell me, so it was moved to this weekend.. I'm so glad.. And I don't think it was by accident.. I need it so much more right now than I did last weekend.. Funny, how Jehovah can even use forgetfulness in order to give us what we emotionally need when we need it.. I love how much He knows us better than we know ourselves, so much so that He can see where our emotions will be in advance & is already maneuvering things to give you what you need before you even know that you will need it..
...Our wonderful spiritual brothers are always able to put things in perspective, share the right scriptures,.. and still make you laugh.. all at the same time.. They could have been with their families, or enjoying needed relaxation time, but they selflessly chose to come see us & encourage us.. They are coordinating with the Hospital Liason Committee in Md, since that is where my surgery will be & that committee handles that hospital.. It's amazing to me how much work these brothers are putting in for us to make sure that everything runs smoothly, they are incredibly organized.. both the brothers here & the ones in Md that have not yet even met us.. All for us.. It gives me even more appreciation for Jehovah's vast organization, for Jesus' loving & diligent care of his congregations, & for our united brotherhood.. I feel so loved, treasured, & protected..
Isaiah 40:11- "Like a shepherd he will care for his flock. With his arm he will gather together the lambs, and in his bosom he will carry them.."
Thursday June 30... D-day plus 17... Anger..
...I'm so angry.. Just.. so angry.. I confided in Matt this morning about my intense frustration.. He was so sweet.. I'm not angry about the cancer.. I'm not angry at any person.. I'm angry because I need a common understanding from someone, anyone, just 1 person, from someone who has had this exact kind of surgery.. I'm tired of hearing "when I had this or that procedure done.." in a way that they really & truly think it's the same surgery.. They think they're being helpful, but they're making it worse.. Because there's nothing worse than someone saying they understand when you know they really don't....
...I don't say anything when someone does that because I don't want to minimize what they've had to go through.. And I don't want to minimize the efforts they are putting forth to try to be encouraging, I know their intentions are good & I appreciate that.. But I desperately yearn for someone that truly understands.. someone that knows that a 'radical hysterectomy' takes out 3x MORE than a complete hysterectomy, & is ONLY done for cancer.. Someone who knows that if a seemingly similar 'procedure' or 'surgery wasn't for a malignant tumor, an invasive cancer, then plain & simple it wasn't anywhere near the scope of this surgery done, & therefore just like I don't want to minimize what they went through, doesn't in turn minimize what I'm going through.. because they have REALLY & truly been there themselves..
...I cried & poured out my heart to Jehovah about what I need.. Please, I need just 1 person.. I don't need it to be someone close to home, I don't care if it's a complete stranger, I don't care if it's simply a blog I come across online with someone's written thoughts as they went through it who I never even meet face to face, I just need it to be a person.. Just 1 person.. Any person..
...I had a terrible time trying to keep it together getting ready for the congregation meeting tonight.. Honestly, I probably wouldn't have gone so that I could stay home & cry some more because it's what I felt that I really needed.. But I had agreed to do a substitute assignment on the program tonight, & I would not bring myself to cancel it last minute.. But I'm grateful for that assignment, because I did know that what I really & truly needed was to be there where Jehovah's holy spirit & encouragement would be, where the congregation was.. Hebrews 10:25.. And I knew that I wouldn't have been strong enough to go otherwise..
...I took a deep breath, plugged ahead, & smiled.. What else do you do..
.................The very first person that spoke to me when I walked into the hall... The very first person.. I didn't have to say a word.. She had heard the news & asked me a few questions & ... it was her.. the answer to my prayer.. The exact understanding I desperately needed.. Exact.. And more.. I never expected it so quickly, or so close to home.. Thank you, Jehovah.. Thank you.. Thank you..
...I don't say anything when someone does that because I don't want to minimize what they've had to go through.. And I don't want to minimize the efforts they are putting forth to try to be encouraging, I know their intentions are good & I appreciate that.. But I desperately yearn for someone that truly understands.. someone that knows that a 'radical hysterectomy' takes out 3x MORE than a complete hysterectomy, & is ONLY done for cancer.. Someone who knows that if a seemingly similar 'procedure' or 'surgery wasn't for a malignant tumor, an invasive cancer, then plain & simple it wasn't anywhere near the scope of this surgery done, & therefore just like I don't want to minimize what they went through, doesn't in turn minimize what I'm going through.. because they have REALLY & truly been there themselves..
...I cried & poured out my heart to Jehovah about what I need.. Please, I need just 1 person.. I don't need it to be someone close to home, I don't care if it's a complete stranger, I don't care if it's simply a blog I come across online with someone's written thoughts as they went through it who I never even meet face to face, I just need it to be a person.. Just 1 person.. Any person..
...I had a terrible time trying to keep it together getting ready for the congregation meeting tonight.. Honestly, I probably wouldn't have gone so that I could stay home & cry some more because it's what I felt that I really needed.. But I had agreed to do a substitute assignment on the program tonight, & I would not bring myself to cancel it last minute.. But I'm grateful for that assignment, because I did know that what I really & truly needed was to be there where Jehovah's holy spirit & encouragement would be, where the congregation was.. Hebrews 10:25.. And I knew that I wouldn't have been strong enough to go otherwise..
...I took a deep breath, plugged ahead, & smiled.. What else do you do..
.................The very first person that spoke to me when I walked into the hall... The very first person.. I didn't have to say a word.. She had heard the news & asked me a few questions & ... it was her.. the answer to my prayer.. The exact understanding I desperately needed.. Exact.. And more.. I never expected it so quickly, or so close to home.. Thank you, Jehovah.. Thank you.. Thank you..
Subscribe to:
Posts (Atom)