I want to thank all my prayer warriors. I am eternally grateful for everyone of you!
My first two infusions have kicked my tail. I've had some nausea for the first 7 days. Then dizziness, shakiness and the fatigue sets in. I have spent a lot of time just lying on the couch watching HGTV. I have also been having one physical therapy session a week to rehab my new hip. Then I also do exercises at home the other six days. It hasn't been too bad. Just a little muscle soreness. I am currently off all my pain meds which is nice.
I received my results from my rheumatologist (Dr. Gn), she said that the ultrasound showed some nodules in my hands that would indicate rheumatoid arthritis except my blood work for that came back negative. She thinks that my immunotherapy drug caused my body to go haywire and attacked my hands and arms and made them swell up. Since the swelling has left my body currently she has started my on a three month round of Hydroxychloroquine. Apparently it takes that long to get into the body and start working. I have a follow up appointment with her next month to see how I am doing. I definitely don't want the swelling to come back. That was extremely painful.
My parents came to visit and we managed to get a week long beach trip in over the 4th of July. We went to Oak Island, NC. It was nice to get away even though I didn't feel so well. My aunt and cousin drove down for a day visit and it was really nice catching up with them too.
I had my third infusion yesterday and so far today I feel pretty good. I've managed to do some laundry and write this blog so I will take that as a big win!
Prayers:
- That I stay feeling well - no nausea, dizziness or fatigue
- That my white blood cell count stays up - I don't want to end up in the hospital like last year
Pic: Dinner with my parents, aunt and cousin in Oak Island - yes my hair started falling out after my second infusion so I shaved what was left before we went to the beach.
Here is a crazy update for those that didn't see my husbands posts on Facebook over the weekend. On Thursday morning I had an appointment for an ultrasound of my hands. I am still waiting on the results of that test from my rheumatologist. After that I went downstairs to get a left hip X-ray to see why I have so much pain. By the time I got home I had two doctors calling me to tell me to pack a bag for a hospital stay. It seems that I fractured my left femoral head back on April 26th. So I had been walking on a broken hip for a month! No wonder the pain was increasing every week that went by.
I didn't have a trauma that caused the fracture, so this is our and the orthopedist's best guess on how it happened. I got off the PET scan table on April 26th and when I turned right to head back to the entrance I got a catch in my left hip. I hobbled a bit and it seemed to work itself out. But as the days went on it kept getting worse. I did have a few micro fractures in that hip left from the radiation treatment for the bone cancer metastasis I had initially. The radiation had left my bones brittle and it just snapped. They originally told me I would have surgery Thursday evening but when they took new X-rays they determined the fracture wasn't acute (since it was a month old) and they set me up with a total hip replacement surgery on Friday.
Surgery went well and I was released from the hospital on Saturday afternoon, which was our 22nd anniversary. It has been nice being home to recover. I will start PT tomorrow. My pain has been fairly easy to manage so far. It is much less than before surgery. Haha!!! I also seem to be getting around really well already just doing the at home PT sheet they sent home with me.
I am still set to start back up with chemotherapy and immunotherapy on June 5th.
Prayers:
- That PT won't beat me up too badly
- Continued great rest and healing of my hip
Pic: Me after I got home on Saturday
Just a quick update. I finally got the date of my first infusion set. It's June 5th. I will be there most of the day receiving three chemotherapy drugs and one immunotherapy drug. I will receive these same drugs every three weeks.
I saw my rheumatologist (Dr Gn) and all the blood work she did came back negative. She is sending me for an ultrasound of both hands next week. Still trying to figure out what caused all the swelling and pain in my arms and hands.
Prayers:
- For my left hip pain to subside. Not sure what is causing it.
- For the next few weeks to be relaxing and restful as I gear up for chemotherapy again.
Pic: Kylie and I at the musical Hades Town a couple weeks ago.
Praise: since my last update I have lost 22 pounds of fluid and the swelling is almost gone. The pain comes and goes but is a lot better.
I had my PET Scan last Friday and met with Dr Brown (oncologist) today. I'm sad to report that I have several lymph nodes in my abdomen that showed metastasis. My left adrenal gland also showed abnormal. Dr Brown is treating the adrenal gland like it's cancer even though she has decided not to biopsy it. My Signatera blood test went up to 18 from 1.48 in September. This means a lot more cancer DNA in my blood. With that being said I will be starting the same 3 chemotherapies and immunotherapy (Keytruda) that I had last year. We are praying that my body tolerates them better this go round. The plan is to start within the next two weeks. I am awaiting a call from my chemotherapy coordinator with the date.
My rheumatologist appointment got moved up and I have a consult with her tomorrow. Hopefully we will learn what caused all the swelling.
Prayers:
- That I will be able to tolerate the chemo better this time and have no side effects and will kick cancer once and for all!
- That we find out what was causing the swelling to try to keep that from happening again.
PIC: Last night celebrating my Mom's Birthday!
Wow...I can't believe it has been three months since my last update. I apologize to those of you who have been checking back for new updates. The last three months have been some of the hardest months of my journey to date. Dr Brown (oncologist) stopped my immunotherapy (Keytruda) as of January 10th. She said that we needed to make sure that the Keytruda wasn't causing all the swelling in my body.
My last post left off with me scheduled for another Nerve Conduction Velocity Test in my arms and hands. I wish I could say that we found out what was causing all the pain I was having but we didn't. The test did show that I have what appears to be bilateral carpal tunnel caused by swelling. It also showed a decrease in nerve function. By the time of the test I started to have some pretty severe swelling in my arms, hands and fingers. The swelling has gotten so bad that I can't close my hands into fists.
As we headed into February and March things are kind of a blur for me. I will give you an overall update on what I remember. I had lots of doctors appointments as I was referred to every kind of doctor out there trying to get to the bottom of what is going on with me. I've had so many blood and urine tests checking me for everything under the sun but all have come back in normal ranges. I also had an EKG which showed I have a strong heart. So what I do know as of now, my heart, liver and kidneys are all functioning well. My endocrinologist has also cleared my pituitary, adrenals and thyroid. So where does that leave me. Tired. Very, very tired. I started sleeping about 18 hours a day. My legs, ankles and feet were always swollen even with wearing compression socks. The bottoms of my feet still have neuropathy in them. My arms, hands and fingers seemed to swell a little bit more each day. Most nights I would wake up with what felt like someone was drilling hot pokers into my hands and fingers. This would last anywhere from 20 minutes to an hour. I would get a couple hours of sleep and it would start all over again. As the weeks went on this phenomenon started happening during the day as well. Sometimes the bones from my elbow to my wrist hurt. All of my fingers except for my little fingers have turned tingly and numb. I've started dropping things more and more since I can't feel my fingers. Using silverware started to hurt. It made my hands feel like someone was freezing them. I had to start using plastic silverware. This same thing happens while typing on the computer. This is why I haven't been updating my blog. It just hurts too much. Somewhere during all this I started to get depressed. My palliative doctor is trying to help me through all this. We have changed up my pain medications a few times and I am now on an antidepressant. I will see her again next week.
So where am I now? Dr Brown has ordered another Signatera blood test. I am awaiting the results of that test. This will show us how much cancer DNA I still have in my blood. I have a PET scan scheduled at the end of this month and an appointment with rheumatology at the end of May. My next appointment with Dr Brown is May 1st. I will see at that appointment if I will be going back on Keytruda. This will depend on the results of the Signatera and PET scan. As of today the swelling in my feet and ankles has gone down and stayed down for three days. I feel like maybe a little of the arm, hands and finger swelling has come down a bit too. I have no idea what is causing this change but I will take it. I am sleeping better with a new pain med so that is also helping to improve my mood. I am still tired a lot, though I am taking less naps during the day. I have developed a cough over the last couple weeks. Not sure if one of my new meds is causing it or not.
Prayer Requests:
- For a favorable outcome with the Signatera test and PET scan
- For an earlier appointment to see the rheumatologist
Pic: Noel and I after a nap!
First off and foremost I am so sorry that I haven't updated my blog since early December. I thank you for your continued prayers.
Here is a 3 minute video I made with pics of my treatments during 2023. It was posted on my FaceBook but incase you didn't see it, here it is. *I do not own the rights to this song. Faithfully - TobyMac
This has been the most challenging post I have made to date, for a couple of reasons. I will be transparent for a moment. I have been discouraged and overwhelmed for the last 5 weeks or so. At times I feel defeated but through all this I still try to remain positive. So here is my update...
I will start off with a win. My left leg pain has healed so much that for the most part I don't have pain in it anymore. I do still have some tingling/numbness on my lower left leg but the sciatic pain down the back of my leg is gone. My low back pain has also healed. I am guessing this is due to the healing of the disc bulge I had at the L4 - L5 area of my back. Yay!!! Because of this my orthopedic doctor (Dr Patt) and I decided to cancel the spinal injection I was scheduled to receive. I do still have neuropathy in the bottoms of both of my feet. I am still doing at home therapies for this and am seeing tiny bits of improvement.
Now for the rest of the story. Some of you might remember that my oncologist (Dr Brown) had set me up for a neurologic consult for my leg pain/numbness/tingling I was having but he couldn't get me in till mid January. Shortly after my last post I started to have right arm and hand pain but only at night while I was sleeping. It felt like I hit my funny bone but times 10. The pain would last about 20 minutes or so and then subside. I would then get a few hours of sleep and then it would happen all over again. This started out slow but as the weeks went on it continually got worse. I told this to Dr Brown at my appointment on January 10. We decided to hold off on my Keytruda injection that day. A side effect sometimes with Keytruda is neuritises (inflammation in nerves). Dr Brown decided that we needed more information from my neurologist (Dr Sergey) to determine if I can continue with the Keytruda injections. Dr Brown did send me for a CT Scan of my chest, abdomen and pelvis to check for returned cancer. I am happy to say nothing showed up! Praise God!!!
I saw Dr Sergey on Monday and he reevaluated my case, since I no longer needed the attention of my left leg and he focused more on the right arm pain/tingling in my fingers. He ordered more blood work and another Nerve Conduction Velocity Test which I will be having on Tuesday this next week. He will retest my left leg and test my right arm and hand. Hopefully after that we will be able to make a new game plan moving forward.
I will say that I have gotten the blood test results back and a couple of the tests are high and not in good ranges. Obviously I have spent some time with Google and there is definitely something going on but I will let Dr Sergey figure out exactly what that is. I will let you know that my whole body is inflammed and I now have constant tingling/numbness in my right hand day and night. It affects every finger except my pinkey. I do get a few episodes at night where it feels like someone is driving a hot poker through the middle of my hand. It usually only lasts about 10-20 minutes and then subsides for a few hours. Because of this I have been having to take some pain meds (hydrocodone) to help me sleep. Dr Sergey did suggest that I try wearing a wrist brace at night to help. I ordered one and have worn it the last three nights and it has helped some, except now I have developed a rash on my wrist under where the brace is. If it isn't one thing it's another.
As for my left hand I do occasionally get some tingling/numbness in my fingers from time to time at night but it doesn't last long and so far goes away. I feel like doing anything these days takes a great deal of effort on my part and I tire really easily. I am walking more upright but my muscles in my legs again tire really quickly. It is hard to do anything with my fingers being numb. I have started to drop things lately because I can't feel if it is there or not. I'm really hoping for some answers this next week after my test on Tuesday.
Prayers:
- For complete healing from all of this!!!!!
- For hope during some of the long hard days.
- That the tingling/numbness doesn't affect my left hand and that the right hand gets better.
- For a quick fix to all of these unexplained symptoms so I can get back on Keytruda. Dr Brown still wants me on this as a precaution for the foreseeable future.
Pic: Noel and I picking Kylie up from musical practice
