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
We all have anniversaries, but this is one that I wish I didn't have.
It has been a year since I found out that I have cancer. The weeks after that were a whirlwind as we learned the extent of the cancer and the metastases. The doctors put together a plan and we followed that plan as I quickly started treatment. For 365 days I have been fighting and winning this battle. My fight continues as my last 2 PET scans have shown no evidence of disease but my bloodwork still shows that some cancer DNA is there. My next bloodwork to check for cancer DNA will be sometime March or April. I will continue my Keytruda infusions every 3 weeks until it is gone. I am also continuing my at home homeopathic remedies and treatments to help reverse the side effects of radiation and chemotherapy that I have been left with.
I want to thank each and everyone of you for your continued prayers. My family and I are eternally grateful for your support through this.
I know this last year has been hard, but through the hard I have remained faithful and grateful in the little things. I remain hopeful that 2024 will be a year of complete healing and reset.
My family and I attended OolaPalooza last week. It's a goal setting and personal development workshop. We each set 21 goals for 2024. 3 goals in each of the 7 F's of Oola: Fitness, Finance, Faith, Field (work), Family, Friends and Fun. It helps us to live a life of balance in this unbalanced world. I've attended this event the last 3 years. It was Devin and Kylie's 2nd time attending. We attended this event last year and then 3 days later I found out I had cancer. In spite of everything going on I still proudly achieved 5 of my goals from last year and I'm still working on a couple more before the end of this year. Here is Kylie on stage during this years event declaring a commitment to herself. Proud of this kid!
Prayers:
- For continued healing from my lingering side effects. (low back pain, pain down my left leg, & neuropathy of my feet)
- For rest during what is typically a busy season
Pic: Me in front of our Christmas tree declaring to live my Oola life!
