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!
Thank you for your prayers. I feel them daily. It's what helps me get through the days.
So I have been out of the hospital for a few days now and I'm getting caught up on my sleep. I forgot to mention what my diagnosis at the hospital was. Febrile Neutropenia. Basically, my white blood cell count was so low at 0.4 that it was causing my body to produce intermittent fevers to try to stimulate white blood cell production. This was caused by the cumulative effects of the chemo I was on. I received a few shots while in the hospital to help further the stimulation of white blood cells. By the time I was released my count was 11.24.
On Tuesday I went to see Dr Brown (oncologist) for a follow up and to have a new symptom looked at. She went over my PET/CT results and confirmed that the scan showed NO cancer!!! I will still be receiving chemo to keep the cancer gone and to kill any that might still remain in my blood.
So, the hemorrhoids that I wasn't getting any relief from, yep, not hemorrhoids but an Anal Cutaneous Fistula. This means I get a referral to a colorectal doctor and an immediate halt on any further chemo infusions until we find out if I need surgery to fix the fistula. I haven't received a call for an appointment yet so I just wait. Meanwhile my Dr did say that sometimes the body will fix the fistula on its own. Fingers crossed!
I also wanted to report that since starting the two drugs for my stomach possible ulcer I haven't been having any stomach pain and have been able to resume eating.
Prayers:
- Praise for the PET scan showing NO cancer!!!
- That my body will fix this fistula without surgery
- That I can get back on my chemo therapy infusions as quick as we can to keep this cancer gone!
Thank you for all of your prayers. I really appreciate it!
Well it's time to get you caught up. On Wednesday May 31 I had my 7th chemo treatment. The treatment itself went well. It's everything after that, that has been a lot to deal with. I am assuming that all of my symptoms are a result of the new chemo drug given since I haven't had these before. Right away the next day I started to have stomach pain anytime I put anything into my mouth. Even just drinking a few sips of water caused pain. This continued to last for a week before getting some relief. Over the weekend after dealing with constipation and then loose stools, I developed the worst case of hemorrhoids I have ever had. It hurt to walk and sit. None of the over the counter products seemed to help. This took a week to get some better. If any of you have suggestions for this please let me know.
On Tuesday June 6 I had an appointment with my endocrinologist for my thyroid. She took a look at my labs and my thyroid numbers looked good and said that we were going to leave my prescription the same and to schedule in 3 months for a recheck. I also had a followup with my orthopedic doctor regarding my bone remodeling. He took some X-rays and said the bones are remodeling fine from the micro fractures and my leg pain should continue to get better. I will see him in 3 months for a follow up.
Tuesday night while watching TV I started to get a fever. At 4 AM my fever was up to 102.8 but by 6 AM it had broke. I notified my oncologist and we made a plan to keep a watch out for more fevers. Anytime I have a fever over 100.4 I need to contact them.
On Wednesday June 7 I had a virtual appointment with my palliative care doctor. We talked mostly about my new symptoms, the stomach pain and hemorrhoids and he told me that I probably have developed an ulcer in my stomach from all the chemo drugs. He prescribed me two new prescriptions to try for the next two weeks to see if I can get some relief.
Wednesday night my parents arrived for a visit for the next two weeks.
Thursday morning I had my PET Scan. I haven't spoken with Dr Brown (oncologist) yet but it appears that my cancer is no longer visible!!! I will write more on this after I have spoken to Dr Brown.
Thursday evening left me feeling feverish again so I called in and talked to the on call staff. They told me that I needed to go have labs drawn to see what was going on. Instead of driving all the way into Charlotte we were instructed to go to the ER in Lincolnton. My labs revealed my WBC count was 0.4. This means that my body has no immune system to fight off anything. The ER doctor contacted the staff in Charlotte and they all agreed I needed to be admitted until my count comes back up. They told us this at about 11 PM. I spent the night in the ER and they took me to a room upstairs the next morning about 8:30 AM. Since then I have been getting IV antibiotics and fluids. The have been culturing my blood but so far nothing has grown. I still continue to get fevers throughout the day. Last night they gave me a shot to try to help stimulate my WBC. My count this morning was 1.39. They are giving me another shot tonight. So we will see if it will stimulate it enough that I might be able to go home. If I'm not released tomorrow I am hoping for Monday.
Prayers:
- That my WBC count raises enough to be released from the hospital.
- That I can find relief for my hemorrhoids.
