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!
Sorry it has been so long since my last update. Thank you for your continued prayers.
Things have been going fairly well. Still doing lots of at home therapies. The neuropathy in my feet continues to improve a little bit each week. My low back also seems to be improving as well. I still get the shooting pains down my legs from time to time as I walk, but it is getting less frequent. I will be getting my next infusion tomorrow.
Prayers:
- That my feet will continue to heal from the neuropathy.
- That the nerves in my low back will continue to heal.
- For prayers for my family - God knows!
PIc: We hosted Thanksgiving for 11 adults and 5 dogs!
This last Tuesday I met with my oncologist (Dr Brown). After looking over my Nerve Conduction Velocity and MRI results she decided that there was no reason why I shouldn't start back up on my Keytruda infusions every three weeks. The tingling down my legs is caused by the bulging disc in my lower back not as a side effect from the Keytruda. So, I started back on Keytruda that afternoon.
Dr Brown also got the results of my Signatera blood test back. I do still have some cancer DNA in my blood. She said it was only a little bit, the score was <20. They will retest me in 6 months.
Ever since my infusion I have been very tired. So I have been trying to rest more which is hard with all the therapies I do every day.
Prayers:
- That I can continue to receive Keytruda with minimal side effects.
- That in 6 months my blood test will show no cancer DNA
- Devin is still doing PT and seems to be healing very well.
Pic: Of me getting my Keytruda infusion. It only takes about 30 minutes once they get it from the pharmacy but it takes about an hour while we wait for it to arrive from the pharmacy.
Phew...it has been awhile since my last update. The old saying goes, "No news is good news."
I had two weeks were I didn't have any appointments so I just stayed home mostly and focused on all the home therapies I am doing. There's a lot and some of them are an hour long and I need to do them twice a day. So, it is very time consuming. Devin and I keep researching about neuropathy and finding new things to try. We figure why not give it a try. The worst that can happen is it won't work.
Devin reached out to a colleague of ours when we heard he was getting great results with patients who have neuropathy. Devin talked to him several times and we decided to give it a try. The program is called Blueprint to Neuropathy. It is a 90 day program that can mostly be done from home. It consists of nutritional shakes, clean eating and two therapies. The Anodyne which stimulates blood flow and the ReBuilder which stimulates nerve regrowth.
I've been doing this for 10 days now and I have to say that along with the other things I have been doing I have started to get feeling back in my heels and the middle part of my feet. This is huge because it means I can walk better and I am using less energy to walk. So I'm not as tired by the end of the day. I might still be wobbly at times while walking but I feel confident that we will reverse the damage done by the chemotherapy.
I know several of you have asked what all I am doing for therapies and nutrition. I will be putting together a list of everything in a different blog post, so stay tuned. Let's just say there are so many that I have to set reminders on my phone to remember to do or take things at certain times of the day. Lol! My brain isn't as good at remembering as it used to be. I'm working on that too!
Thank you to those of you who were praying for me on Monday, October 9th. I felt your prayers and because of that and a little help from some Valium I made it through my two MRI's. They scanned my lower back and pelvis.
On Tuesday, October 10th we met with Dr Patt (orthopedist) to discuss my results and my options moving forward. He went over the results of the Nerve Conduction Velocity Test and the two MRI's. The NCVT showed decreased nerve activity in both legs but more so on the left. The MRI's showed a large disc herniation at L4/L5 and a smaller one at L5/S1. He discussed how the radiation I had at the beginning weakened the bones and the metastasis that was in the bones and now healed have left some major holes in my bones which is allowing the discs to move into areas they aren't suppose to be in. Which is causing me significant pain when I am walking/standing.
For treatments we talked about doing a series of injections called a spinal block at L4. This will make it so hopefully I won't be able to feel pain in my legs when walking. He also discussed doing surgery to fuse L4/L5/S1 to hopefully stabilize the area. He gave me a 50-50 chance of feeling better and healing properly. It seems that my body has really taken a hit from all the radiation and 4 types of chemotherapy. He did talk to us about how 1/2 of all disc herniations might heal themselves within a years time. With this information we all felt that at this time my best option is to try the nerve block. It is scheduled for after Thanksgiving. That was the earliest time they had available. I am on a waitlist for an earlier opening. In the meantime I will continue to build my body back up both nutritionally and with therapies.
I have been off of Prednisone now for the last 5 days and my sleep schedule is slowly returning back to normal. However, this is also causing me to have more pain in my legs and low back. I am managing it with some over the counter creams as best I can and resting when it gets too bad.
I go this coming Tuesday, October 17th to get my blood drawn. meet with Dr Brown (oncologist) and get started with my Keytruda infusions again. At least I am anticipating the infusion since the MRI ruled out that this was caused by a neuritis from Keytruda.
Prayers:
- Continued healing for Devin's torn tendon. He seems to be healing well and has started PT.
- For me as I get started on Keytruda again. That my body will be able to use it to keep the cancer away and that I won't get any of the side effects from it.
Pic of me doing one of my therapies. Notice my hair is coming back in slowly!
