Category: 2-A Little More Info

i have had quite a few people ask me what the SE are this time around/are they as bad as previous rounds. My usual answer has been, “If i had these SE the first time around, i probably would have blogged about them, but after all i have been through, they seem kind of mild!”

Be wary of mild SE. They can come back to bite you! One of the SE this time around has involved platelets. i am more susceptible to bleeding or bruising.  Another one is mouth sores & ulcers – makes it hard to eat anything. That and the ongoing nausea makes it hard to keep up my strength.

So a couple of nights ago, i had nosebleed that lasted about 10 minutes. When i finally got the bleeding to stop, i was afraid to blow my nose for fear of starting it again. Twenty-four hours later, it was a full blown sinus infection. Add to that a few other infections that quickly started. Things can move that fast.

You can’t rely on how you feel. You have to go by the numbers. In my case, the numbers were a fever of 102. The fever then went to 101.7, which i thought meant it was getting better…until the fever went back up to 102 today. i spent the rest of the day at doctors offices. First my Primary Care Doctor, and then the oncologist. Getting antibiotics and fluids. And being reminded that there is a reason why they tell you to call in when your fever is over 100.4. Point well taken.

God’s still got this!!!!

Now i know why they call this a journey. i was never very good at marathons, and i am ready to be at the end of this one.

And the length of this post is so long, because i’m trying to catch up with all the appointments, test results, options, etc. It seems things change each day.

After i was cleared from the surgeon, i had my followup with my oncologist today. To me, right now, my biggest concern is controlling my nausea. The team is doing all they can to help me, but they are just as concerned about the cancer. i didn’t really understand why, because my surgery results were clear.

Last time i did this, i finished the chemo-the tumor was gone because of the chemo. That is called a “complete response”.  The term for a person who stops treatment early, and there are still cancer cells in the body, it is called an “incomplete response”. That is me this time. (Just to be clear, even knowing what that means going forward now, i would still do everything the same.)

My current status is that the tumor that started this whole thing is gone. Before surgery, there was still some cancer in my body. It was super small, but it was still there. After, the surgeon said my margins were great. The node biopsies they took (4) were all clear. So YAY! i was prepared for some radiation, which will probably start in a few weeks (i meet with that doctor is 2 weeks). What i had not thought of, and it makes sense now, is why i still needed chemo. However how, what kind, and how much is still up in the air. My oncologist explained that i may still have cancer cells in my body. The chemo is really the only way to get rid of those cells.

As i was explaining everything to dad, it suddenly occurred to me. If there were still cancer cells in my body that we knew about, there is the chance that i have them somewhere else. ahhhh. makes sense. Not excited about it, but it makes sense. Another patient told me that the type of cancer we have has a more than usual tendency to metastasis. That is why they are so aggressive with getting rid of it.

But the one thing that is driving this train right now is nausea. You have all heard this many times, but i have basically been nauseous to some degree since around May 2017. (first sets of chemo, first diagnosis). But now it is out of control. i constantly feel like i’m going to…, you know…, and then all of a sudden, my body is hungry for a short time. Then i get sick again. i am on a 2 week food nutrition thing, basically a glorified BRAT* diet. if that helps my stomach, then we can move forward from there. In my mind, that will also determine which type of chemo i will do.

So if you see me around, and i don’t look like i’m over the moon about the tumor being gone, it doesn’t mean i’m not thrilled.  It’s because i’m already on the next leg of the journey.

*BRAT diet – it is a bland food diet. Bananas, Rice, Apples or applesauce, and Toast.

Well, as promised, i have some great news! i met with my oncologist yesterday, and asked if we could stop chemo, and go to surgery. The last couple of exams the tumor has been reducing, even though i haven’t had a treatment since December 10 (All praise to Jesus!!). And as you know, my body has not exactly handled this round of chemo well. She said that it was absolutely a possibility. We discussed the different scenarios that could happen, and decided to wait until after the surgery to see what’s next!

This morning i went to my surgeon, and we talked about the surgery. She also noted that the tumor was really small, and wants me to have the surgery as soon as we can. Unfortunately she is booked through the 23, so i’ll probably be scheduled later on this month…unless someone has to cancel, and then i might get bumped up earlier! (prayers!!)

Overall, my body stills feels pretty rough, but all my numbers are good, or at least close to good. Mentally, i feel like a weight has been lifted off me.

The one thing that seems to be holding on, is the nausea. After talking to a few other cancer survivors, i found out it is quite common to feel this way for a while. Well, if i’m going to have it, i hope it helps me lose a few more pounds. (looking for the silver lining, right?!?)

As soon as i have a date for surgery, or any other information i will post it! i will keep to the schedule of posting regularly on Mondays, but we are now in a time where things happen at any time, so there may be other posts in between.

Thank you all for your prayers and encouragement! Dad and i could not have made it this far without you!!

All praise and glory to God, the Great Physician!

What would a holiday season be without at least one trip to the hospital, am i right? Yep! You guessed it. i was able to spend some quality time at one of our local area hospitals this weekend.

About a week and a half ago, dad came down with a respiratory infection, and i took care of him. He actually bounced back pretty quick and i was feeling a little overconfident that i wouldn’t catch it. Famous last words.

It started with coughing, and then i got the fever. It would spike, i would take meds and it would come down. But eventually, it shot up to 101.4 and after 2 days i was unable to bring it down. In fact it got as high as 102.4 before i went to the ER. Long story short – i have rsv. And the doctors said i was still contagious. So i am spending Christmas Eve and Christmas at home wearing a mask, and washing or purell-ing my hands every 10 minutes it seems!

This has also moved my chemo back one week. Yay! Blessing.

So here is where we are: My ribs are sore from coughing, and i am on self imposed voice rest. Every time i talk, i start coughing. Texting and emails are my mode of conversation. We also don’t want anyone to be infected by me, so we’re not letting anyone in the house. i have not done any cooking or baking in over a week. That’s right, no cookies. At least not for now. Dad is taking care of anything that has to do with food or talking to people.

My youngest niece Sara took a picture of us that we were going to include in the Christmas cards this year. That isn’t happening now. So we posted the picture on our facebook pages.

So if you haven’t heard from me lately, now you know why. Praying that you are all having a great Christmas! And remember that Jesus is the reason for the season.

Thanx be to God for His indescribable gift!

Today my platelets were a little low, but not too low, so i was able to get my infusions! That is good news, because it keeps me on the every other week rotation. As much as i can keep my body on the same schedule, the easier it is for all! Since the platelets were already low, i asked what i needed to look for or to do. i was told my job was “to make sure i did not fall!” No pressure there! ha ha

This week the tumor was “harder to find” than before! Yay! We are still taking things one week at a time, but hopefully this means we will be done with the chemo sooner than later. My oncologist would like to see me go through at least a full 6 cycles. (each cycle includes 2 infusions). If that is the course, i will be at the halfway point with my next infusion. Again, things can change in a day, so i’m just following my body, and my doctors, and taking it one step at a time!

Getting my infusion today also means my next scheduled chemo treatment is very early on Christmas Eve morning. The past few times, i have felt my best on the two days after the infusion. That means i will be able to eat, and enjoy what i’m eating on Christmas Day! There is my gift right there!

My celebration of good news is tempered with the realization that there are others who are not all getting good news. i am blessed with getting to know many others who are fighting various forms of the big C, and we are all in different places of our journey. Tonight though, i am particularly sensitive to the family of a brave young man, the nephew of a good friend of mine, who just met Jesus face to face this past Saturday. He is in the best place he can ever be. But his family and many friends are grieving a huge loss. Please keep them all in your prayers. God has truly shown Himself mighty and merciful by keeping them in His loving and protective hands. And He will continue to be glorified in Clay’s life. A life that we as humans, in our limited sight, see as being over here on earth. But God, who is not limited, sees an ongoing love story on this earth and in heaven. A story that He wrote at the beginning. And that we are now able to read.

Praying God’s Bubble Wrap for his loved ones.

Whew! This is an off week for any chemo, thankfully! This past week was very much like two weeks ago – Monday – Wednesday i felt “ok.” i was only a little nauseous so i could eat some regular meals. Thursday morning started the same, a few SE started in the morning, getting a little worse around 11-12’sh. They really kicked in Thursday night through Friday night. i was not able to stray far from my bed. i wanted so to sleep Thursday night, but couldn’t which made Friday worse.

Unfortunately one of my babies had some stomach troubles of his own, and we had quite a mess in my room. i did as much as i could, but nausea and weakness limited what i could do. Thankfully we have a great friend, (Thank you Vickie!!) who was already coming over on Friday. She was able to help with what i couldn’t, and the three of us (me, cuddles and casper) were able to sleep most of Friday away. What a blessing. You never realize how precious some things are, until you don’t have them. Even a simple thing, like sleeping in your own warm, comfy bed!

Saturday and Sunday were the two days when i would get out of breath just walking across the family room, so i was still on track! Usually my biggest issue on Mondays is the weakness, but i am usually able to eat and move about easier. For some reason i woke up this morning with a few SE that really messed me up. i also feel weaker than yesterday! Hmm. i hope this is not going to be a trend. We are having rehearsals and setup for “Celebrate Christmas Together” this week. i hope this doesn’t continue for the rest of the week.

Today is day 7. Days are counted from the date of infusion, and certain things usually happen on certain days. Day 7 through about Day 10 is supposed to be the time frame when your WBC are at their lowest. Those are the days when i avoid large crowds, being enclosed in a room with someone who is sick, etc. It is also a time when i get very tired very easy. i am determined to do what i can, until i can’t. There are a lot of people who do a lot more, when they feel a lot worse, so i can “suck it up buttercup!”  So if you see me for the next few days and i am off to the side more than usual, don’t take it personally.

And as a personal note, Southeast’s “Celebrate Christmas Together” starts this coming Friday evening! We have service on Saturday evening, and then it runs from Sunday through Friday next week! (December 7, 9-14). It is a great family time, with things for kids of all ages!! i hope to see you there, or at least see lots of pictures on facebook. ha ha.

And remember, Jesus is the Reason for the Season!