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.
