As I write this, I have been dealing with unusual health issues for the past 5 weeks. It began when I woke up on a Monday morning, January 18, with pain in my hands and wrists and my feet and ankles. It hurt to move and the bottoms of my feet felt like I was walking on rocks. I took some Tylenol thinking that I must have overdone myself over the weekend or unknowingly harmed myself in some way. I also bought some Advil later that day thinking if I had inflammation, ibuprofen would help that. After two or three days of the same scenario and only being able to function normally (i.e. walk) with painkillers, I could tell it was not easing up.
Thursday is our homeschool co-op day and, fortunately, my daughter's piano lesson had been cancelled so we did not have to stay as long as we usually do. I could tell at the end of our regular activities that I was done-for and after letting Gracie play outside for a little while with her friends, we went home, and I went straight to bed. I took a nap and woke up experiencing greater pain so that it was very difficult to get comfortable to get to sleep. That night, I was kept awake and began getting getting "elevated heart rate" alerts on my Apple Watch. The next morning, when I got up, after taking Tylenol and waiting for it to take effect, I put my hand on my ironing board to get by and noticed that my left hand was swollen. I knew then that something definitely wasn't right. I also noticed that my feet were swelling. I texted my doc and my husband. My doc asked if I could come to see her in the next 30-40 minutes and my husband said he was on his way home. An EKG checked out fine. She prescribed Lasix for me which, after several days of getting the right dosage figured out, began to help. I wound up losing 10+ pounds (which is not a bad thing for me).
Over the weekend, I stayed home chained to the couch or the bed which is where I've spent much of my time unless I've gone to church services and one or two homeschool co-op days. On Monday, my bloodwork results came back in showing that I was fighting some kind of (viral) infection and my doc asked me and my daughter to get tested for Covid. Thankfully, it was not the nightmare I'd heard about and it was quick. We both tested negative. I felt pretty well on Monday but began to feel tired that evening and was again chained to the couch or the bed all day Tuesday and the first part of Wednesday.
Wednesday, January 27th, was my daughter's birthday and I was determined to make it a good day for her. Thankfully, the Tylenol (or Advil) kicked in and I felt well enough to take her out to lunch and to go shopping at her favorite store Five Below. While getting ready, I noticed that my feet were not only swollen but were an odd shade of purple! My doctor was home because one or more of her family members had caught the stomach bug, so she couldn't see me. No one else at her clinic could see me, either. Gracie and I went through one of our favorite BBQ drive-throughs (Baby Jacks in Bartlett) and had a delicious lunch. My husband texted and said that I needed to see somebody that day. I called the internal medicine doc he wanted me to call and they don't do same-day new patients. My only recourse was to go to a doc in a box (i.e. Baptist Minor Med). The receptionist didn't give me any paperwork to fill out, but sent a triage nurse out to see me who said, "You need to go to the ER." She went back to consult with a doc and came out saying, "You need to go to the ER." My husband was on his way home, so I decided to stop by home so that I could pack a "just in case they admit me" bag and so that Gracie could pack a "going to stay with Noni" bag. Noni is my pastor's wife and Gracie's adopted grandma. I am so blessed to have a pastor's wife who I don't have to say, "Would it be possible for you to keep Gracie while I'm in the ER?" but rather, "Gracie is packing a suitcase to stay with you."
The ER which is less than 5 minutes from our home, did not let minors come in at all (unless they're the ones being seen), so I told Robert to go take Gracie to Five Below to do her shopping (my baby WILL do something fun for her birthday!!). He took her there and then took her to my pastor's house. She wound up staying overnight and doing a fun project for homeschool co-op that was due the next day (which turned out beautifully). I was at the ER for 7-½ hours which was long but not unexpected. I had already been with my mother to the ER half a dozen times so I knew not to expect fast food results. There was a lot of waiting and tests and more waiting; a short consult with the ER doc (who hypothesized that I had Reynaud's Syndrome - which made NO SENSE whatsoever); then an ultrasound and a CT scan to rule out blood clots; more waiting followed by being put into an ER waiting room (rather than waiting in the main waiting room); a second CT scan and then the doctor came in. He said that I did not have any blood clots; however, they found a mass on my liver, lesions in my lungs, and enlarged lymph nodes ----> potentially and probably cancer.
In order to get a referral, I had to see my PCP again. I already knew which oncologist I wanted to see because she had been my hematologist for the last 11-½ years, ever since my iron levels dipped down during my pregnancy. I already had an established relationship with Dr. Spiers and trusted her. After what we went through when my mom was sick with cancer, I knew what kind of doctor I did not want to be dealing with. I sent Dr. Spiers a message on the Patient Portal to give her a heads up. I had a referral to see her just two days later, but my appointment was not for another week.
In the meantime I have been about the same: pain and some swelling (feeling like the tin man when I wake up - stiff and hard to move); extreme fatigue with some days of a little bit of energy. My friends from church have been wonderful about helping me out and cheering me on. Friends and family from out of town have been wonderful as well. I forgot to say that the Sunday before the onset of my pain, I also began having a slight cough. I still have the cough. Sometimes it keeps me awake and sometimes it's more manageable. Surprisingly, the thing that helps calm it is running the diffuser with Essential Oils.
As much as possible, I want my husband to continue to work at his job as that keeps his life normal. I also want as much normalcy as possible for my daughter. She has missed some homeschool PE classes (because of my need to sleep in or because I don't feel like I can drive her in), but she's not missed any church services, American Heritage Girls meetings, or homeschool co-op days. We won't talk about homeschooling except to say this is a season of life where it needs to slow down. We have been able to make our violin lessons with the help of Zoom meetings. My progress is slower than ever, but that's ok.
I asked my pastor's wife to go with me to my first oncology appointment. I wanted her to meet Dr. Spiers and I wanted her there with me for emotional support and to be my second brain. She was well impressed with Dr. Spiers as I knew she would be and she helped fill in the things I forgot to say in my narrative to Dr. Spiers.
Next step: to have a PET scan done as well as a specialized MRI of the liver. Hindrance: Memphis got snowed in which created havoc for many people.
I finally was able to get the tests scheduled for March 3rd and a follow-up with Dr. Spiers for March 9th. I'm not totally happy with the long wait time for both of those, but it's the best they could do. Dr. Spiers told me that she would get her nurse to talk to radiology about getting an earlier appointment; the nurse wrote me and said that that was the soonest they had, but they would let us know if I can be worked in sooner.
You might be wondering how am I handling this potential diagnosis? I have my moments of wondering what all is going to happen, but overall, I am trusting God to either heal me (and as my friend Mrs. Johnnie May says, "God don't do anything halfway! He can heal you completely!!") or to be with me every step of the way. My husband was pretty gobsmacked by the news but he has turned Warrior to fight cancer with supplements and good nutrition. I'm not really able to cook because I can't stand long. Sometimes I'll make myself a peanut butter sandwich or grab a snack, but other than that, I depend on my husband and my daughter to feed me. My daughter can make eggs exactly the way I like them (better than I can). My husband has been making nutritionally-dense smoothies which is my breakfast on those days. Most of the time they taste good or tolerable; other times I have to choke it down. Same with the nutritionally-dense foods he's been concocting. I like some veggies, but most of them I do not like. I have not complained and I try to eat as much of his stuff as I can; but I do not have a poker face when it comes to food. He hates to watch me eat and make faces (I promise it's not on purpose), but sometimes it's all I can do to think, "Is this going to make me throw up?" He gets very offended, but there's nothing I can do about that.
And speaking of throwing up, the Tuesday before my first oncology appointment, Robert gave me a bowl of cut-up kiwi to eat because he knew that kiwi was really good for something although he couldn't remember exactly what. I had had kiwi before. I wasn't crazy about it, but I didn't hate it, either. Given the choice, I'd rather not eat it, but I wouldn't turn it down, either. I ate it and within a few minutes, I noticed that my mouth started feeling funny like it was almost tingling and a weird coating was covering the inside of my mouth. A quick Google search taught me that kiwi allergy is a thing. Within 30 minutes maybe an hour, I could tell my stomach was affected. Robert had already gone to bed (even knowing about the reaction - although I think he tried to blow it off). I ran to my bathroom to use it, and when I got up realized I was going to puke. I puked several times somewhat violently and then went back to the couch. After another little while, I began to feel a little light-headed. I went to the closest bathroom that time to try to go (my whole digestive system was awakened) and could tell I felt like I was going to pass out. I told Gracie to go get Daddy, and I laid out in the floor of the hallway. She did and asked me why was I lying in the floor. I told her so that if I passed out, I wouldn't fall off the toilet. My husband didn't know what to do. I told him to call 911 and tell them thus and so. After a couple of minutes, I knew I hadn't heard him call and I heard him banging around in the kitchen. I said, "WHAT are you doing??" (If you hear me say that, it means I think you're doing something stupid.) He came to the hallway with a bowl of my friend Brooke's delicious chicken noodle soup that he had doctored up with an illegal amount of garlic and who knows what else. The smell was overpowering and unwanted. He said, "I thought....Do you think you can eat some of this?" "NO! . . . . If you don't want to call 911, then call Poison Control!" (I was about to get ugly mad which is hard to do when you're laid out in the hallway feeling both lightheaded and nauseous and weak as a newborn kitten.) I guess he decided I was serious because he called poison control who really didn't have much to say (I kinda don't remember). My stomach felt tight as a drum. He asked me what I did feel like eating or drinking and I said, "Sprite." I had not had ANY soda or ANY sugar since my daughter's birthday when I had a Coke at the ER. Cancer loves sugar, so we are starving cancer of sugar. He ran to the "corner grocery" which is Yankee-speak for the gas station and made Gracie stay right beside me. I had Gracie text my pastor's wife to let her know what was going on. He came back with the Sprite and that helped me tremendously. I burped for over 30 minutes and finally began to feel halfway normal, i.e. out of danger. By the time I got to bed after two hours of MISERY, I was feeling ok. So now we know that I'm allergic to kiwi.
Gracie has been handling things well, probably because I'm pretty calm about things (except for the kiwi thing). I find that if you, as the parent, are calm and matter-of-fact, it goes a long way to help your child not get scared and worried. She has heard the prayers of people at church -- I was anointed with oil one Wednesday night, a very private and emotional experience for me -- and she's seen the loving care that our friends have shown us. She did ask me today, "Do you have cancer?" It took her that long to ask or say anything about my health. I told her, "Maybe. We don't know for sure. That's why I have to have the tests done to find out for sure." She took it well. I know she remembers some of our time with my mom (her Mia) when she was sick with cancer five years ago. I don't know how much she remembers since she was only 5-6 years old. I am very thankful, however, that no matter what happens in the future, that we have loving support to help up through this.
Over the last week or so, I've had a couple of days of good energy, and some days of decreasing energy. I have made it to every church service which has been a big boost for me despite me having to sit a lot and walk slowly. It's good to see my friends and it's wonderful to hear the preaching and the music. Both speak to my heart. Some days I'm able to get a few desk things done (church projects and family stuff); other days, I do little more than sit on the couch until it's time to go to bed. I have not needed as much Lasix as I did at the beginning which is great. I also don't have the "tin man" feeling in the morning as often. My feet still turn funny colors sometimes. I have had days in a row when I didn't feel strong enough to take a shower or wash my hair. I won't say how many days. When I do take a shower, I've had to use my mom's shower stool to rest for most of it. It's a very strange feeling to feel so old and weak at my age.
If you're of the praying kind, please pray:
1) that my tests can be moved up to a sooner date,
2) that I continue to be strong enough to do what I need to do - I can't delegate everything,
3) that the radiologist will have great wisdom when reading the scans,
4) that my doctor will continue to have wisdom in making an accurate diagnosis (or two - I may have more than one thing going on) and in knowing what the next steps are. and
5) that my husband and daughter will be able to adapt well.
Thank you for reading this long discourse.
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Thanks for sharing your thoughts!