Thank you to all my faithful prayer warriors! I am so blessed to be covered by so many prayers.
Wow, I can't believe its been 20 days since my last update. Sorry about that but there wasn't much to report until this week. I've just been busy trying to enjoy the last of summer. School starts Monday for us.
So, about a week ago I started to notice some additional pain and neurologic symptoms in my left leg. It has made it very difficult to walk and I had to start using a cane. Some of the symptoms were sciatic pain, inability to even lift my leg out of my shoe with out assistance, tingling/numbness on the outer portion of the lower leg, inability to lift my toes off the floor and some slight swelling. This made it very difficult to walk as sometimes I would catch my toes on the floor. I decided that it didn't warrant an ER visit since I was going to see my oncologist 5 days later.
Tuesday, August 22, 2023
We saw Dr Brown(oncologist) after my routine blood draw in the lab. She reviewed my bloodwork and everything looked real good. I explained my symptoms that were going on with my leg. She asked me a lot of questions and I showed her my limitations I was having. She explained that Keytruda (immunotherapy drug) can have a side effect of neuritis. Which is inflammation putting pressure on nerves to decrease their function. She said they can come and go and can attack anywhere in the body. I was supposed to have my next infusion the next day (Wednesday). She made the decision to cancel the infusion and start me on high dose steroids for the next 6 weeks. She said that we should know by Monday if the steroids will help with what is going on in my leg. I am happy to say that I have gotten some reprieve in the last three days. The pain is less, swelling is coming down and I can move my toes a bit better.
Friday, August 25, 2023
My PET/CT showed NO EVIDENCE OF DISEASE for a second time! I am PRAISING GOD for this!!!!! I will be honest with you. I was a bit worried that maybe the cancer had come back in my sacrum or pelvis and was causing the leg issues. So that was a huge relief for me to read the report. I know I had a lot of people praying for this and I can't thank you enough.
I'm not sure what this means moving forward for my treatment plan. I do see in my portal that I am set up for my next Keytruda infusion on September 13th. I will be touching base with Dr Brown on Monday to tell her about how I am doing with my leg and discuss the plans moving forward.
Prayers:
- That the steroids continue to work and resolve all my leg issues 100%.
- For sleep. The steroids have been messing with my sleep the last two nights. A common side effect I am told.
- For my doctors to be able to make a good game plan as far as my treatment plan moving forward. We want to keep the cancer gone and keep my symptoms at a minimum.
- Devin - yes he needs prayers again. About five weeks ago he woke up and his left ankle hurt so much he hobbled around for a few days. It helped when he used sports tape to tape it up. He finally got in to see an orthopedist yesterday. They did an x-ray and exam. They will be setting him up for an MRI. Meanwhile he is in a walking boot until then.
Pic: A YUMMY rootbeer float to celebrate my PET scan results!
Last Tuesday 8/2 we had a meeting with Dr Brown (oncologist) after some routine bloodwork. My bloodwork was all good. We talked about how to keep my white blood cells up while continuing my infusions. The plan was to get an injection 24 hours after my chemo infusion to help stimulate white blood cell production. This would hopefully keep me out of the hospital with Febrile Neutropenia. We then talked about how in the last 3 weeks the neuropathy in my feet has gotten even worse. The complete bottoms of my feet are now numb/tingly. It is making it extremely difficult to walk as I can't feel my feet. With this new information we decided to discontinue the last two chemotherapy drugs that I was on. This also means that I don't need the injection for the white blood cells.
So, what does this mean? Moving forward for the time being I will only be receiving Keytruda the immunotherapy drug every three weeks. A new PET/CT scan is scheduled for the end of the month. If you remember the last PET/CT showed no evidence of disease. We are praying this remains the same.
On Wednesday 8/3 I saw Dr Kadakia (palliative care). We discussed how every time I am hospitalized I lose strength in my legs. Which makes it even harder to walk. I will be trying to regain some leg strength at home and we will discuss starting physical therapy in 6 weeks when I see him again. He stated that once people are off chemo some will reverse the neuropathy in 2 months - 2 years. This gives me some hope, as others have told me it will most likely be irreversible. Time will tell. Fingers crossed!
Prayers:
- For some good healing sleep so I can start to rehab my legs. My legs just feel like jelly most of the time.
- For the neuropathy in my feet to reverse.
- For a no evidence of disease PET/CT at the end of the month.
Pic: Just a great reminder to myself that my struggle is a sign that God is up to something great in my life!
Thank you to everyone who has kept us in your prayers. We really do appreciate it.
So after my last update, Devin and Kylie both ended up on more medications. Kylie was tested for everything, even mono. Everything came back negative. As it turns out they both just ended up with a very bad summer virus. I am happy to report that they have both turned a corner and it seems like we can finally put this cold behind us.
The day after I wrote my last update I started to run intermittent fevers. Just like last month. I contacted my team of doctors and they sent me for bloodwork to see where my white blood cell count was at. Since it was late on Friday afternoon when they did the blood draw, we were informed that we should have the results back on Saturday. They called me at 11:30pm to tell me that my count was 0.57 and I needed to get myself to the hospital. Needless to say I was already sound asleep and didn't get the message until the morning. So Devin dropped me off at the hospital and made sure I was all good and then I sent him home, since he didn't feel well. Devin and Kylie rested at home for the weekend while I was in the hospital. They gave me the same shot as last time to help bring my white blood cell counts up. I was given this shot both Saturday and Sunday nights. On Monday morning my white blood cell counts were high enough that they discharged me and sent me home. I was glad because they didn't let me get much sleep.
On Thursday night I got the biggest surprise. My sister and niece came to visit me for a week. We have been having a blast catching up. It has been good for my soul! Today we ventured into Charlotte and went to the Museum of Illusion. If you have kids or teens this is a must to check out. We had a lot of laughs.
Prayers:
- That we can figure out what needs to be done with my chemo treatments to keep me out of the hospital. We meet with Dr Brown on Tuesday.
Last Wednesday, July 12th I had my 8th chemotherapy infusion. Dr Brown and I decided to do only 3 of my chemo drugs and not do Avastin this time. We wanted to allow my body a little more healing time of my anal fissure. All went well with the infusion but I woke up the next day feeling very fatigued. This fatigue has continued to plague me everyday since. I am feeling a little bit better today. So, hopefully on the mend from this.
Besides the fatigue my legs have felt very shaky and I have been having some low back pain. On the upside though my leg pain has not existed since my infusion. It seems Dr Kadakia was right. The steroids I get during my infusion help the leg pain.
Today I went to see my colorectal doctor (Dr Hill) for a follow up. I am happy to report that the anal fissure is healing nicely and I will not need to see him again unless something changes.
On the home front, Kylie is still suffering with congestion and cough from her trip. She has finished medications that she was prescribed and she is still not 100% yet. She has also shared her sickness with Devin. The two of them went for some IV Therapy today so fingers crossed within 24 hours they will be much better.
Prayers:
- That I don't catch whatever it is they have. I am now in my low white blood cell days following my chemo.
- That they would get over the sickness and feel better.
- That my fatigue will subside so I can get some things done around the house.
Pic: My dogs keeping me company all week. They love to take naps on me!
It's been awhile since I updated you'll. Not a whole lot has happened since my last update. I've just been taking lots of time to rest and relax.
Here is a little recap of what happened. My last chemo infusion(May 31) left me drained both physically and emotionally. It dropped my white blood cell count so low that I ended up in the hospital. Then after the 4 day stay in the hospital I saw my oncologist(Dr Brown) and learned that the hemorrhoids I thought I had were actually a fistula, or so we thought. She cancelled my next chemo infusion. I was referred to a colorectal doctor(Dr Hill) and he said he thought it was a fissure. Great news as these are easier to heal and usually don't require surgery. Chemo makes it so that I heal very slowly.
So I have been resting as much as I can to promote healing. I am glad to report that the fissure is still healing but I believe we are on the better side of that now. My left leg pain is another story. It only hurts while walking but the further I have gotten since my last chemo infusion the more painful it is getting. I can usually walk my dogs in the morning with minimal pain but as the day goes on the more painful it becomes. If I am going to be up and about a lot in the afternoon or evening then I usually need to take some pain medicine to help get through the day. My pain doctor(Dr Kadakia) explained that I get a lot of steroids with my infusions which help to reduce swelling which in turn helps my leg from hurting.
I am looking forward to my next infusion this Wednesday for that reason. I am hoping that my leg will feel better after that. I am not sure which chemo drugs I will be given yet as two of them have caused the side effects that I experienced. The fissure and low white blood cell count. I go to lab at 7:30AM Wednesday and meet with Dr Brown to discuss my options before I head to my chemo infusion at 9:30AM.
Kylie returned home last night from her epic 23 day adventure with Teens Westward Bound. They visited 22 states in 23 days! There were 80 high schoolers plus counselors and a director that went on the trip. They had the bus in the pic along with two 15 passenger vans both towing trailers behind for all their stuff. They visited a lot of National Parks, colleges, Vegas and even Disney Land along the way. She has been sharing many stories with us and has made many new friends.
Prayers:
- That Dr Brown and I can come up with a good plan for my chemo infusions moving forward to keep my side effects to a minimum and keep me out of the hospital.
- That Kylie can catch up on some much needed sleep and for her to get over her cold she returned with.
Pic: Devin and I on our date night to The Melting Pot! My hair is starting to return slowly.
I really appreciate all of your words of encouragement and prayers. Thank you!
On Tuesday I had my referral appointment to the colorectal doctor (Dr Hill). He was only able to do about 1/2 of the exam do to me having so much pain. He did say that it looked like I have a fissure and not a fistula. I guess this is a good thing as fissures are easier to heal than a fistula. And since all the chemo and radiation I have received my body takes longer to heal. Our plan for now is to let my body heal it with the help of a prescription cream. The first prescription was going to cost over $600 and was flagged at the pharmacy. When I contacted Dr Hill his PA told me he would have Dr Hill put in a different prescription that costs a lot less. I still haven't heard from my pharmacy about that prescription. So I will probably have to message them on Monday again. I do have an appointment in a month for Dr Hill to recheck me and make sure everything is healing well.
On Wednesday I had an appointment with Dr Kadakia (palliative care - pain management). We went over all my prescriptions and we talked about my hospital stay, stomach pain and the anal fissure. We also discussed why my left leg/butt pain gets worse the farther out from chemo I get. He said that I get a lot of steroids during my chemo infusions and this helps with the pain in my leg. I try not to take the hydrocodone he has prescribed for me but will to be able to walk my dogs and do some household chores. He agreed that my body is in need of a break from chemo for awhile and that it was a good thing that Dr Brown (oncologist) cancelled my chemo for this last week. He always reminds me of how much I am going through and the toll it takes on my body. I will see him in six weeks.
On Thursday my parents returned home to Wisconsin and I had an acupuncture treatment. I always find them so relaxing. I have noticed a decrease in my hot flashes and night sweats over the last few treatments.
I've looked ahead in my calendar and I don't have any appointments for the next two weeks. Yay!!! So I will spend this time relaxing and healing.
Prayers:
- For my left leg/butt pain to subside
- For healing of my anal fissure
- For the cancer to not come back while I am on a break from the chemo infusions
- Prayers for Kylie. She is on a 23 day Teens Westward Bound trip. She has been gone for a week now and it sounds like she is having a blast. Link to their blog for the trip. Blog
PS. Here is a recent pic of me. My hair & eyebrows are starting to grow back!
