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!
Continued thanks for all who pray for us!
Just a little update as we wait for my upcoming appointments and tests.
I was supposed to have my Nerve Conduction Velocity Test last week but they called me the morning of and said I was only scheduled for a consult. The doctor had read my file and said there wasn't a need for me to come that day and instead he went ahead and just scheduled the test. It is scheduled for October 17th but I am listed on the cancelation list if something opens up sooner. Fingers crossed because I am supposed to meet with Dr Patt (orthopedist) on October 10th to go over all my results and formulate our game plan.
Overall, I am doing pretty well. Energy levels are increasing and I seem to be getting more stamina. I get easily tired and have more left leg pain as the day goes on. The sharp sciatic pain comes and goes throughout the day. I have noticed that as we drop down in Prednisone dose my leg pain increases also. Not sure what Dr Brown will do with this information but I see her on Tuesday for a followup.
The Prednisone continues to keep me up at night. I'm averaging 6 - 7 hours of sleep but I really like to get 9 - 10. I am getting a lot of books read so that is nice. I hadn't read much over the past few years and I am reminded how much I enjoy it.
Update on Devin. His tendon appears to be healing as he doesn't need to wear the boot anymore. He either tapes it or wears a support stocking. So praise God for this blessing!
Prayers:
- That I might get in earlier than Oct. 17th for my Nerve Conduction Velocity Test
- That Dr Brown won't increase my Prednisone prescription again on Tuesday. I want to start sleeping better and losing the water weight I have gained.
- That Devin's tendon will continue to heal
Pic: One of the many areas we laser each and every day! These treatments have helped me so much.
Thank you for your continued prayers. We really do appreciate it!
So here are all the updates I have.
Devin had his MRI on Saturday. He has a partially torn Soleus tendon (it's one of the calf muscles). They are referring him to physical therapy and it should be healed in 3-4 months.
I had 4 appointments on Tuesday. . Endocrinologist (Dr Sudhakar) - she looked over my labs and my thyroid looks good as long as I continue taking Levothyroxine. She set me up for a followup in 6 months.
Then I saw my orthopedist (Dr Patt) - He took a few sets of pelvic and lumbar x-rays. He watched me walk and we talked about the tingling/numbness I have in my left leg. We also talked about the foot drop I am experiencing. The prednisone I was put on for it by my oncologist (Dr Brown) has helped some but not fully. He is referring me for a lumbar and pelvic MRI. It is scheduled for early October. He is also referring me to get a nerve conductivity test of both my legs so they can make a comparison. That is scheduled for next week. I will follow up with him after both tests are done.
Next up was routine labs. All my labs looked good!
Lastly, we saw my oncologist (Dr Brown). We discussed my prior appointments that day. We talked about how the prednisone was working some but not fully. As it turns out I did better with the left leg nerve pain when I was on higher doses of the prednisone. The symptoms started to come back as we weaned down the dose. So, she put me back on 40mg per day of prednisone. I will take that for the next week and then halve it the next week. Because there is a chance that this is a side effect of Keytruda my immunotherapy drug we decided to cancel my infusions at this time until all testing is done. Apparently Keytruda can cause neuritis. I will see her in 2 weeks for a follow up. She also referred me for a neurology workup but that isnt scheduled until right before Thanksgiving.
I had to return to the lab after I saw Dr Brown because she ordered a special test that gets sent out called Signatera. It checks my blood to see if any cancer cells are still floating around in it. I am not sure when I will get the results of this back. She said she would feel better about holding the Keytruda infusions if my blood was clear. I feel the same way!
Yesterday ( Wednesday) I saw my palliative care team. It is usually Dr Kadakia but last time and yesterday I saw his 2nd in command Anna Catherine Morris, PA. She is really nice and in my opinion just as knowledgeable as Dr Kadakia. We discussed all my appointments from the day before and we talked at length about my left leg. She decided to double my prescription for gabapentin. I will now be taking it morning and night. We will see if this helps with the nerve pain until we get this all figured out.
Prayers:
- That between the prednisone and gabapentin I can continue to get relief from the nerve pain and be able to do things around the house. I've been doing some purging and organizing.
- That Devin's tendon would heal fully.
- That my tests would reveal what is going on in my body so we can treat it and get back to fighting the cancer. Remember that Dr. Brown initially said this would be a two year fight with infusions.
