So, the day after I wrote my last post I ended up getting c-diff again. I contacted my care team right away and they got me on another antibiotic that day. I was fortunate enough that within two days the antibiotic was already working.
My oncology care team decided to go ahead with my fifth infusion that Thursday October 10th with the exception of withholding Avastin. I still received my other two chemotherapy's and my immunotherapy. The infusion went well but left me exhausted for about a week and a half. I slept a lot.
On Thursday I had routine bloodwork drawn for my rheumatologist appointment the next week. The next day I woke up to 3 phone calls and 5 text messages from her nurse that my white blood cell count was dangerously low and that I needed to go to the ER immediately. I contacted my oncology care team to have them look at it. I received a call back and they said, "you are nine days out from your treatment and that is when the white blood cells are at their lowest. We will recheck them next week before your infusion." I was super thankful I didn't need to go to the hospital.
On Tuesday October 22nd I dropped my computer on my left foot/ big toe. I still have lots of swelling and really dark bruising. It has made walking very difficult.
Yesterday, I had my 6th infusion. All blood work looked really good, even my white blood cell count was back up. We. did all three chemotherapies and immunotherapy.
So far I am doing good. Keeping on top of my anti nausea meds has helped.
Prayers:
- For healing of my foot
- For no side effects from my current infusion
Pic:One of my infusion bags from yesterday
So, my last infusion was on September 4th and went really well. I had enough energy that I was able to help with some yard work that weekend. However, I woke up on Tuesday morning feeling so tired. I slept off and on that whole day. In the middle of the night I woke up with diarrhea. This continued for the next three days, with trips to the bathroom and then to bed to sleep.
On Friday Devin had an RN come to the house to give me an IV with vitamins. On Saturday afternoon I finally had some energy and was awake for a few hours.
Sunday Devin decided that we needed to find out what was going on with me as I was still having diarrhea. So off to the hospital we went. My blood work was all good and they gave my an IV because I was dehydrated. They also sent out a stool sample and sent me home. I was so glad they didn't admit me.
On Monday morning I got a call from the lab that I had C-Diff. So they ordered me 10 days of antibiotics. Finally on day nine I started to feel better. Devin did have the RN come back on Friday to give me another IV with vitamins. For three weeks all I did was sleep, watch a little tv and then sleep some more.
I am grateful that I was well enough to go with Kylie and Devin to UNC Charlotte for their open house on September 28th. It is one of five schools Kylie is looking into for college. I can't believe we are already thinking about college!!!
I am scheduled for my next infusion on Thursday this week. My last one was canceled because of the C-Diff.
Praise:
- That I was able to get over C-Diff with only 1 round of antibiotics
Prayers:
- That my infusion will go well with minimum side effects
- That I can start to regain the strength that I lost while being in bed for 3 weeks
Pic: Devin, Kylie & I at UNC Charlotte
Short and sweet update. As always, thank you for the well wishes and prayers! They are greatly appreciated!!!
Yesterday was a long eleven hour day. I had blood drawn at the lab, saw my oncologist (Dr. Brown), and had all three of my chemotherapies and my immunotherapy during my infusion. I am happy to report that all went very well.
My abdominal infection is almost healed completely.
I have felt pretty good today. Good energy and so far only one side effect. I am starting to get some stomach queasiness even with my nausea medications. I will be starting to double up on those to see if it helps along with eating smaller potions of food more often.
Prayers:
- For the queasiness to go away completely
- To have good energy levels
Pic: My new favorite quote and it happens to be from OOLA!!!
Short but sweet update! Since my last (third) infusion I've been dealing with nausea the first week and then fatigue after that. I have been going to physical therapy every week for my hip. Last week I graduated and now just get to do exercises at home.
Last Wednesday I had a CT with and without contrast to see how well my infusions are working. The report came back that all of my abdominal lymph nodes have shrunk at least 50%. My left adrenal gland is stable. Praise God that the treatments are working.
Today was suppose to be my forth infusion but Dr. Brown decided to hold off on it because my CT also showed that I have an abdominal staph infection. So instead I was sent home with two different antibiotics to take for the next two weeks. I will resume my infusions in three weeks.
Prayers:
- That the staph infection clears on its own in the next two weeks.
- Kylie starts her Freshman year at our local community college tomorrow. She is still a Junior in High School as we are not graduating her early so we can take advantage of NC Career and College Promise Program. This gets us her first two years of college paid for by the state!
Praise:
- For GREAT CT results!
Pic: Just me messing around with my camera!
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!
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!
