July 2019

My apologies for not keeping up. i have had a few good signs of healing, and a couple of really rough days (some physically, some personally). i am going to cover July in this post, and start with August the next post.

The first of July was eventful. The neighborhood i live in really likes fireworks. So much so that they although the 4th was like being in the middle of Thunder over Louisville…but they also decided to test some out the few days before, and of course finish up their stock for the week or so after. Cuddles is not a fan of fireworks, so she was pretty shook up. Casper could care less about them, but he was pretty jealous that Cuddles spent so much time in my lap.

We had a day long conference at the church, which i was blessed to work with. It was my first long day, and although i thought was i was pretty on top of things, by the end of the evening, i started feeling pretty bad. i of course started blaming it on damage to my body from the cancer treatments, but found out later on that week i probably just had the stomach bug going around.

The bigger part of those days was the part that hurts more. i miss daddy. For the past couple of years, when i was sick, he took care of everything, even keeping others updated if needed. But it was just me and kiddos. Every time i got out of bed to let them out, or feed them, or answer the texts/return a call, i thought of him. Glad C&C were there to snuggle and comfort me.

The second half of July was more an emotional and physical rollercoaster. There was the celebration of finishing the radiation treatments! But i was still having trouble sleeping for more than a couple of hours at a time. Food was also really starting to lose it’s appeal. i am not doing well with solid food. Instead of starting to want to eat more, it seems i am going the opposite direction. And although i was very vocal to those around me that i knew my body was not going to bounce back to 100% in three days, in my own head i really believed i should have felt better. My hair was not growing, and my energy level was in the negative numbers.

It wasn’t until after i had been beating myself up, and pushing myself too hard, that i found out the radiation in my body would still be doing it’s magic for a while after the treatments were over. i am looking forward to the day when i turn the corner, and have more energy, and can eat solid foods. Right now i am living on french toast and organic potato chips. The smell of some of my favorite foods makes me nauseous. sigh. Not gaining any weight, but not losing any more either – holding my own i guess. The heat in the 90’s was not helping either.

i have been told that it is usually a year after treatment before some patients start to feel like their old self. Since this is my second go ’round in less than two years, it may even take longer. Only 11’sh months left to go! 🙂

 

June 24-June 30

What a week! My body is not sure which way it is supposed to go. Sometimes i go to bed early, sometimes late, but either way, i usually awake a couple of hours later, from a deep sleep, starving. i keep peanuts in a container by my bed, since a small handful is usually enough to stop the hunger pains, and then my stomach is good until morning. My feet, legs and arms are another matter. Usually sometime around 4am’sh, until i finally give in and get up, i start getting muscle cramps. The only way to stop the ones in my feet and legs is to get out of bed and walk around. The babies are getting used to this by now, but at first they couldn’t figure out if it was time to go outside and potty, or eat, or what. Now they just look up at me when i get out of bed, and then go back to sleep.

Theyd did a cbc blood test run a couple of weeks ago, along with a couple of other tests. My potassium, and magnesium were both in the normal range. i was also not dehydrated, so i am not sure what is causing this. i can’t blame the radiation, since the cramping actually started about a month ago. It just keeps getting more and more.

During the day, the muscle cramping seems to limit itself to my hands, and sometimes about midway down my back on either side. i have charts of pressure points (thank you Shelly!!) so i am starting to try to do acupressure on those areas. i am also trying a few other things that doctors have told me about in the past to help with muscle cramps. Oh, and i thought the ones in my feet were triggered by something at night, but the other day, i took a 2.5 hour nap during the day, and only woke up because they cramped up…evidently it has something to do with me lying down for a set period of time…hmmmm. thoughts? 🙂

You probably noticed i said i took a longer nap one day. Yep. i am getting more tired, but i am also trying to rest enough so that i don’t fall asleep during normal activities…like talking on the phone, watching tv, etc Counting down to July 18th!

Otherwise, the only other thing that has been interesting to deal with, has nothing to do with the radiation. But since i had my little stint in the hospital, my diet has gotten even weirder than before. That’s saying something. My body does not seem to enjoy healthy foods, ones that i actually like! When i eat salad, cereal, greek yogurt, egg salad, carrots, vegetables of any kind, and most solid foods, it tastes weird, and by the time it gets to my stomach, i don’t usually feel too good. i had most of a baked potato for dinner saturday night. i couldn’t finish it.

But pizza, caprese salad, bits of fried chicken, (not whole pieces), hot dogs, ice cream, ruffles, peanuts, etc. they all seem to be ok. i can’t eat a lot of them, but i don’t get as sick. i just ordered a case of the Ensure Therapeutic Nutrition they gave me at the hospital, and i drink at least one a day. Sometimes twice a day if i can’t get food down. i am keeping my weight even, so i know i’m doing ok in the calorie intake department. Although i do wish i could get a couple of more pounds off, i want to do it the right way. Eating right and moving around more.

i do get frustrated that i can’t do the things i want to do easily anymore…and i know that when the radiation is over and i start rebuilding my strength, it will come back. But i have my moments. i have to share one with you!
i was having a “woke up in time to make it to an appointment” day, and those are so frustrating, i was telling God i wanted Him to hurry up and come back. i was tired of this, frustrated by my limitations, and even more anxious to go home where i will get a new body, see people i have lost over the years, etc.

i got in my car, and the radio was set to a Christian station, and a song was on i hadn’t heard before. Here’s what i heard.

He’s got a plan, this is part of it
He’s gonna finish what He started
He’s got a plan, this is part of it
He’s gonna finish what He started
He’s not done
God’s not done writing your story
No, He’s not done
God’s not done with you
God’s not done with you

Hmmm…think i was supposed to take away something from that? Not surprisingly the name of the song is “God’s Not Done with You” and Tauren Wells sings it. The rest of the lyrics are equally as poignant.
(here’s a link to Tauren Wells page, and the song is near the top: 
https://www.taurenwells.com/music)

So, God’s not done with me. sigh. And i’m sure He’s not done with you yet either. Maranatha!

June 14-23

i had my first radiation treatment on Wednesday, June 19. Since i was doing that, i wanted to get a printout of my bloodwork before i started. i, and the oncology staff, were very pleased to know that my wbc was on the upper section of “normal”!! Most of my numbers were. Some were still a bit low or high, platelets, etc., but all were much better than two weeks prior.

That was a great praise! i am still really weak. i can only walk so far before i need to sit and rest. The last time i had radiation in 2017, the only side effect i remember was the tiredness and fatigue. Since i am already there, it is not that big of a stretch to deal with. The more time i put between my last chemo and now, the more energy and strength i gain. Granted, not as much as i want, or as fast as i want, but do-able. The first full week (which will really be the 24-28) will probably be a wash. i won’t get stronger, but hopefully i won’t get too much weaker. The last radiation treatment is scheduled for July 17, so hopefully from the 18 on it will be gaining strength all the way.

With the radiation treatments happening around 7-7:30 am each day, it gives me time to go home and rest, or take a nap for a bit before i head into work. Hopefully that will help. i’ll keep you all updated.

In the meantime, and as i ended the last post, continue to pray for me and my family as we navigate this time. i have received a lot of emails, texts, and even phone calls from so many of you in the past few days, reminding me that you all are praying for us. Some have even said i have been on their heart, or mind, or they feel they need to pray for me. i so appreciate that, but the last time this happened at this magnitude, was august of last year, and very soon after that i was diagnosed with cancer for the second time. Makes me wonder.

But as i have said to so many, even in the past couple of months, God is in control. He knows what is coming, and what He wants from it. Scary, but comforted. i don’t understand Him most of the time, but i do trust Him. He is the only one that has complete control, and no limitations. To God be the Glory! Amen!!

June 3-13

Catching up!! As per the previous post, on Monday, May 13 i got my chemo infusion (4 of  6). This time, i was not feeling good from the first day. That had not happened so far with this round of chemo. As discussed, this was supposed to be an easier type of chemo for my body to handle, and to a certain degree it was, however i was still getting fluids and such for the first three, and it was getting a little worse each time. i chalked up the issues this time to what i had been going through the previous two weeks, mourning dad, and physically worn out. Turns out i was not quite on point.

By Tuesday i knew something was a little off, and had some sensitivity in my mouth. i started taking some of the meds i take with mouth issues, hoping to take care of it early, but quickly i started realizing i had a bigger issue. i was starting to get blisters, some bleeding, most burning all the time, in my mouth and throat. i was unable to eat solid food, and started eating milk shakes for most of, if not all my meals. (again, 5 days of dairy queen milk shakes for my meals and i lost 9 more pounds! Sound familiar? 🙂  )

On Sunday i started having a fever, but tylenol was able to break the fever, and i was back to normal 98.5 through early morning on Monday.

On Monday the 20th, i had an oncology followup appointment late in the day. i woke up with a low fever, which quickly moved to 101 by 8:30’sh, and they told me to come right in. Upon arriving, i looked bad enough that they started me on pain meds and antibiotics right away. They then told me that i was going to be admitted to the hospital as soon as they could find a bed, and when this was cleared we would be talking about stopping further chemo. i was in a room in the cancer floor of Norton Women’s and Children hospital by late afternoon. i spent 8 days in the hospital, and had no white blood cells to speak of. My marrow was also not creating any new ones either. After multiple doctors, antibiotics, treatments and tests, i was released from the hospital, with a VERY low WBC. i stayed home that week resting, and when i went back to the docs on May 28th, i had enough WBC to return to work part time, with obvious precautions.

We also discussed upcoming treatment. They determined that my body really reacts differently to chemo, so we are going to stop chemo now, and start radiation. After the radiation is done, i will go into “followup” mode for about a year, and pray this is done. Done. All Done.

The past couple of weeks i have been working part time as my body would allow, and cleaning up around the house as much as possible. i hope to go in friday (June 14) to get a blood test done to find out what my totals are, and if i am still low in any areas.

i am still very tired. My sleep patterns are non-existent, and i m just now eating solid foods for at least 2 meals a day. i met with my radiation doctor and his team over the past two weeks, and start that on Wednesday, the 19th. It should be over around July 17th. Last time i took radiation, the only side effect i had was the weakness/tired response. Since i am slowly building that back now, the first week or so it may be barely noticable, and then we’ll see after that. We are already talking about ways to work around that, or at least minimize how much it will affect me physically.

The kids (Cuddles and Casper) and i are still figuring out what home life is like going forward. It seems really quiet around the house, especially in the evening. And sometimes i expect dad to be sitting in his chair, or wake me up in the morning. It is still new. i know it sounds weird, but keeping busy with the cancer and radiation helps. My memory (“chemo brain”) is still a challenge at times, and i know i will have some sort of that for the rest of my life, but i am ready to clear up as much of that as possible.

Thank you all for your cards, prayers, thoughts, calls, and support through the past couple of months. If you don’t hear from me, or want to catch up, please feel free to call, email or text. If i am in the middle of something, napping or just can’t get to the phone, i won’t pick up, but will call back if you leave a message.

There are three take-aways at this time:
1) Until i start getting my body evened out, my sleep and eating scheduled is very fluid. Dinner is not always at 6 (or even in the evening) and if i wake up at 4 am, and can’t get back to sleep, you may wake up to a text, email, etc. from me! Sorry ahead of time.
2) Resting doesn’t always mean sleeping. But if i am resting, unless it is urgent, i will probably not answer my phone or emails right away.
3) i have said this to several people, almost in a joking manner, but it is really pretty true – i know that God has a plan for all that i have been through recently. He won’t waste what He has been teaching me since March 2017, (and earlier of course.) And i trust Him totally. But i am also very scared of what He has planned for me, if this is the training for it. Please continue to keep our whole family in your prayers.

May 13-14

It’s been an interesting, emotional, surreal, busy, quiet, exhausting, no-sleeping, falling asleep in the middle of someone visiting, tears, laughter, [add your own description] 2 and 1/2 weeks.

On Friday, April 26, dad fell and hit his head. This caused bleeding into his brain, which was not viewable on his head anywhere, so finding it was a God thing in the ER. He had emergency surgery that night, and although the surgery was successful, he had multiple strokes over the next few days, something we found out on Monday, April 29. He went home to meet Jesus at 6:15 am on Tuesday, April 30.

i apologize to those who did not find it out until after his visitation, or are just now finding out. Dad was greatly loved, a great storyteller, and affected more lives than we may ever know.

i reminded him several times over his days in the icu, that he promised me two things:
1-he was going to be here until he was 100. (short by 8 1/2 years!)
2-God kept him around to take care of me through my cancer treatments. (i still have 3 more infusions, and a round of radiation!)

But he has told everyone that he was ready to go whenever Jesus wanted him to come home. He has led a full life, done what he wanted to do, and knew where he was going. i know where he is, and still believe that God’s got this as far as my journey goes, so although sometimes a bubble pops (see “God’s Bubble Wrap” post if you don’t understand that!) and i have a mini-meltdown, I know he is in a much better place. i wouldn’t ask him to come back.

Thank you to all of you that have stepped up to help me, my brother and his family, and of course my two babies. We appreciate it more than we can convey to you.

i had to delay my infusions from the original schedule, since dad was in the hospital when my 4th one was scheduled. So, i ended up having infusion #4 yesterday on the 13th. My numbers were great, and it was a problem free, so we were home by lunch. I was obviously more tired than i thought i was – i ended up sleeping until around 5:30 last night. When i woke up, i saw an invitation to one of my nephew’s house. He had everyone over to make sure they had some time together before my oldest nephew and his family were heading back home to North Carolina.

Anyway, i am still going on with chemo, then radiation, and i have a few times when i will be a bit out of reach for each treatment, but still going on with the journey I signed up for.

Thank you! God’s still got this. And i got a late Christmas present that was really timed perfectly. It is a glass box with the words “If God brings you to it, He’ll bring you through it.”

April 22-23

Wow. The last few days have been like a whirlwind, but not like you would think. Going through what i have been through over the past couple of years, i still am surprised, by some things.

Thursday was an amazing day! i worked the Classic Worship service in the morning, and The Easter Encounter Service during Encounter. i told everyone i was planning on taking multiple naps on Friday, until dad and i met my brother and sister in law for the Friday evening service. (Which was wonderful, and made even more so by having Steven and Betty there!)

Sleeping all day on Friday, i barely noticed that my temperature was rising. About an hour before we going to leave for church, it was at 99.8. Close to the go number, but not there yet. Right before we left, i started getting really hot and sweating. My temp came in at 101. But i was starting to sweat, so it felt like my temp was breaking. i decided to give it until after church and see what my temp was. It was perfectly normal, 99.1. All good.

Unfortunately, Saturday and Sunday became a roller coaster of temperatures. It went from 99.8 to 102.1, breaking, both days. i did not call the doctors office, because within an hour of hitting a higher number, it would drop down under 100.

However, Sunday afternoon, my temp went to 101, and stayed there for over an hour. So i did what i was told, and called it in. They said i had to to go to the ER as expected. By the time i was able to find a ride, my fever had finally broke, and was down to 99.8. i told them if it went up overnight, i would go to the ER, but otherwise go to my doc on monday.

i was able to sleep through the night. And when i woke up around 5 am, i had a fever of 103. i was about 3 hours from my doctors office opening, so i was going to wait until then. i contacted a friend (Shout out to Misty!!) who came over and took me to the oncologists office. My temperature was 101.7, my heart rate was 140, my wbc was .97 (down from 1.3, normal starts at 4.5) and my anc was .08 (down from .76, normal starts at 2.0). no bueno. i was having trouble getting a deep breath, and sometimes when i tried to, one of my lungs felt “cold”.

They gave me fluids and meds in my iv over a few hours, and i started feeling much better. i still want to sleep all the time, but i’m not feeling sick like i did. Since i had expressed trouble catching my breath, they decided to do a CT scan just to be sure something else wasn’t going on. The results came back close to normal, and for the part that wasn’t, it was determined it possibly was an issue resulting from my heart rate and dehydration. Since being hydrated, i don’t feel the cold, but i am still breathing more shallow than normal. But i’m still breathing, so that is good.

Anyway, on the way home i was getting hungry, so i got a little something to eat, and not long after arriving home, i slept. i felt like i had been through a marathon, and i couldn’t stay awake. i had an hour+ nap, woke up, and went to bed. Starting to become the norm! ha ha.

i rested all day Tuesday as well, and am going into work here soon. i’m feeling much better. Still not my usual bouncy self, but able to do a few things. Yay!

Since my insurance has approved Neulasta for me again, they will probably use it with my next infusion this coming monday. Hopefully i won’t get so low on wbc, and it won’t wear my body out as much over the two weeks. That would go a long way!

A side note – whenever i go there and get treatment they have a list of about a thousand questions that they ask. One is if i am depressed or anxious. i don’t feel depressed or anxious, but am concerned if i will ever have any energy to do anything again. i have friends who watch their grandkids, one that is doing some home remodeling herself, some that go to or lead exercise classes…my activity routine is limited to crossing the room. or getting dressed. i am glad i am able to continue work through this, as i think it is actually helping build myself up while i am getting treatments.  But right now a trip to the grocery, even in a cart, is out of the question. i pray that my energy will return, but that’s something i’m still looking for on the horizon. Thankfully i can eat more now. (Even if some people don’t think so)

On behalf of me and my family, thank you for reaching out, praying, or just treating me like i’m still normal.

He is Risen! And He is powerful. This is His fight, and i am just along for the ride. All praise to Jesus!!

April 15

Well, good news and ok news… i am hopefully over the most serious of nausea  and usual SE. (please!)

The oncology team keeps telling me that i know when i’m dehydrated. Evidently i do not. i haven’t been eating much, but i still thought the weakness, lightheadness and fatigue may have had something to do with being dehydrated. Nope! That test came back negative. So no, i am not an expert on my dehydration. 🙂 One of more positive effects of not eating, is i have lost a few more pounds. i’ll admit, not the best way, but i’ll take it! There was a part of me that hoped i was not dehydrated. When they give you fluids, you gain a couple of pounds back. So yay!

Today they ran my labs, and my numbers were around the level they usually are on day 14. (To put that in perspective, today is day 7.) Not sure if that means that my numbers are at their lowest now, or if they will still get lower as i get closer to day 14.  For those who are interested in actual numbers, i have included a section on the bottom over the past few weeks, so you can see what i’m talking about. Tomorrow i am going to move a copy of the numbers to the Facts section.   If you just want it in english, here it is:
My history for this chemo is: Monday i get infusion. That is usually when my numbers are the highest. The second week, my numbers have dropped about 1/3’sh of the totals. The third week i usually have my lowest numbers. That is when we pull out the masks and avoid crowds. Then my numbers start climbing, and we start it all over again. With my numbers so low today, we are starting the mask thing early – which will make Easter week very interesting for me.

So overall report: If i am sitting down, i can talk for hours (i know, nothing new.) But getting up and walking takes a bit more. i start off ok, but wear out quickly! Really quickly. i sit for a few minutes, then off again. For food, i eat a few bites, then stop for a while. So, if you see me do any of these things over the next couple of weeks, i’m ok. If i am laying on the ground with my eyes closed, i made need help! (just kidding!!)

All things considered, it was a good report! Just being careful, avoid stress, and not pushing myself too hard. (There seems to be a lot of repeating in todays post!)

The Great Physician has got this. He had it way before i was even born. This is Easter week, and it is also a time when we realize that the same power that raised Jesus from dead, is still working today. All Praise to God the Father, Jesus the Son, and the Holy Spirit! He is risen! He is risen indeed!!!

Section of numbers for those interested:
WBC Normal Range 4.5-11
ANC Normal Range 2.0-8.8
March 11 (  WBC 1.47, ANC .05)
*March 18 (WBC 3.42, ANC 2.18)
March 25 (  WBC  1.07, ANC .5)
April 1 (       WBC .87,    ANC .05)
*April 8 (      WBC 3.79,  ANC 2.45)
April 15 (      WBC 1.3,    ANC  .76)

April 1

This morning i had my yearly physical with my primary care physician. i did really well, my general numbers are in the range they are supposed to be in. So except for the fact that i have cancer, i’m quite healthy!!

Well, except for a couple of things – When they took my temperature, it was 100.4. (This is the number that i am supposed to contact my oncologist office.) i asked if we could check it a couple more times. Last time i had a temperature, by the time i got to the oncology office, it was back down to 98.6. i didn’t want to waste anyone’s time. After taking my temp 3 more times, it was 100.3, 100.1, the back up to 100.4. So my pcp called my oncologist directly, and i went right out to Dr. A’s office.

Also during the physical with my pcp, there was also something funky going on with my eyes. i hadn’t noticed anything out of the ordinary, but then again my ordinary is pretty different than most. 🙂 My pcp also talked to my oncologist about that, since that it could just be a side effect of one of the chemos.

The blood test that they did right off the bat at the oncologist office showed my levels were lower than they were last week. Which means i’m continuing to lose white blood cells. This may be starting a pattern, as the first infusion had the same issue- the numbers kept going down through the second week, then they turned around to have decent numbers on the third monday. Hoping this is the same. i also have a couple of tests they want to do this week. Just checking out a couple of things.

My anc is .05, which is realllllly low. That means i need to stay away from others again, at least for the next couple of days. Wheee!!

Other than that, nothing new around here! ha ha. Let me know if you have any questions.

March 25

Quick Recap:
The first chemo/21 day cycle treatment expected to feel SE near the end of the the first week. Nope! Near the end of the second week they started. (fever of 102, antibiotics, etc.)
The second chemo/21 day treatment expected the same kind of schedule starting on the second week. ha ha! right! Felt good until day 3/Thursday morning. After checking in with my bosses, it was decided that i would get more work done from home. But this time i also started having burning pain in my mouth, tongue, and throat. The meds needed to help with that is on back order. Hoping to find out if there is another med i can use tomorrow.

Now for the good news! i went in today for my day 7 labs, and all my numbers were about where we thought they would be. i do not have a fever, my platelets and ANC* numbers are low, but not nearly as low as last week! i will need to wear a mask this week, and watch out for any miscellaneous bleeding. Since this round the issues started early, and i am already working ahead on meds, i pray this means that for the next two weeks my body will be building up for the next round of chemo.

One interesting wrinkle, last week my scalp started feeling very sensitive. i could barely touch my head. For the next day or so, i was finding hair everywhere. on the pillow, on the chair, and perhaps the most unsettling, on the dinner table. Thinning and/or losing my hair is a known side effect from one of the chemos, but with the amount of hair i have, it was hard to tell which way it was going, or how long it was going to take! i decided, to be respective to those around me, my hair should just go away. (picture pigpen from the Snoopy cartoons, only it was hair and not dirt following me around.)  🙂 i still have my long wig, and most of my scarves and hats, so i am still covered. My co-workers never said anything, but i’m pretty sure they will feel a little better sharing a lunch table with me for the next few weeks.

And just in case you thought i was getting off easy this time through, so far i have pulled a muscle in my right shoulder and my left knee. There are days when i can’t tell if my body is responding to age, or to chemo. (i’m choosing to believe it’s chemo – at least for a while longer.)

All Praise to Him who created everything! He knows the end from the beginning.

*ANC=Absolute Neutrophil Count. A type of white blood cells that fight infection.

March 18

#2 of 6 chemo treatments, and so far so good!

Each chemo has its own personality. When i was first diagnosed, i did a lot of research into my cancer and the treatment. i based quite a bit of my expectations on the information i found from other patients and papers posted by well known medical sites and cancer fighting facilities. It has taken a third type of chemo to treat the same type of cancer, to realize that everyone, every drug, every time is different. Bodies react differently. i don’t know why i’m surprised!

In 2017, the first set of meds were strong acting, short time turn around (one set of infusions every week). The second set of 2017 was stronger acting, and the recovery time between each dose was longer (one set of infusions every other week). The first dose of 2018/2019 was strong acting, with a short turn around time (one infusion every other week) – unfortunately my body was not able to handle it well. It took 3 months just to get 5 infusions.

This fourth time, 2019, the dose is still strong, but more old school. It also has the longest turn around time one infusion every 21 days. i got the first one three weeks ago. The first week the side effects were very easy. The second week, usually the time my body would be rebuilding, it actually went the other way, and more SE were kicking in. By the second weekend, i had gained a possible set of infections, and a fever hovering around 101/102. Last Monday, as previously posted, i was getting high doses of antibiotic via my port, with a followup antibiotic pill taken each day.

This day was a good day! My numbers were up! The infusion went well, with the only side effect being really tired. So i came home, and took about a 3 hour nap, and feel really good tonight. Like last time, labs are run on day 7 to see if my body reacts like it did for the first set. Hopefully these series will run the same course, and if so, i will be able to plan ahead, and be prepared.

Dad and i are very thankful for your prayers. We can see God moving so much! We are trying to keep up a “normal” life throughout this whole situation, so we are also thankful for everyone’s patience and support.

To God be the Glory!