Saturday, July 14, 2018

I have been pretty negligent about updating this blog lately so I will try to update everyone now on what has been going on. Here is a somewhat condensed version of the last 8 months or so. I will fill in more details as needed.

I was doing chemo treatments of carboplatin every 3 weeks with neulasta shots the day after to help boost my white blood cell production. Still even with the neulasta, I had a couple of instances where my white blood cell count was too low and we had to put off treatment for a week. My oldest daughter got married a few days after Christmas and we had a lot of company in town for that. My counts were too low for the treatment that I was supposed to have right before Christmas so we decided to put off the treatment until after the new year. My CA-125 counts went down initially with these Carboplatin infusions, but then they started to creep up again shortly after the new year. I had a CT scan at the end of April and it showed some new spots in the lungs and in my lower right abdomen that were concerning to the doctors and indicated that the Carboplatin was not working as well as we want it to.

So starting in May they switched me to a new chemo drug called Doxil, combined with a drug I was on when it was in the experimental phase, called Avastin or Bevacizumab. Before I was able to start on the Doxil, they had to do an Echocardiogram on my heart to make sure that it is strong and working as it should. I will be given the Doxil every 4 weeks and the Avastin every 2 weeks. The biggest side effect with the Doxil is sores in the mouth and on the palms of the hands and soles of the feet. I am not supposed to lose my hair - YAY!

I had my first Doxil infusion on May 21st. They do not give me the Benadryl as a premed for the infusion so I won't be knocked out like I was for the Carboplatin! YAY! The fun part of the infusion though is that they put ice packs on my wrists and my ankles and give me ice chips to suck on the whole time during the infusion to try and prevent the sores on the hands and feet and in the mouth. The idea behind the ice is that it will restrict the blood vessels to help prevent the Doxil from getting to those areas. Other than that the infusions aren't too bad and so far I haven't really had any side effects except the bottoms of my feet are more sensitive and I made the mistake of walking outside barefooted for longer than I should have and ended up getting a really big sore/blister on the bottom of my right foot near the heel. It was pretty painful for a few days and I had to walk around with my tennis shoes on for added cushioning. I still have kind of a skin flap where the sore was but I don't want to peel it off and create any more sores!

I then had an Avastin infusion 2 weeks later and then we left town for a week and a half to visit some family in Washington and northern Idaho. I was fitted for a thigh-high compression stocking just before we left town because I was having some swelling in my left leg - we are not sure if it is caused by the tumor that they weren't able to remove last August or if it some nerve damage or scar tissue caused by the tumor. I wore the compression stocking when we were in the car for a long time and a couple of other times, but it was rubbing the inside of my thigh pretty good and causing some sores there from the silicone that holds the stocking in place. Since our trip my leg hasn't really been swelling up so hopefully that means that the Doxil is working...

My next Doxil infusion was supposed to be on June 18th but my white blood cell counts were way too low so we had to put it off a week. By the next week my counts were much better but when I went in for my infusion my blood pressure was too high... (This is sometimes a side effect of the Avastin.) After taking it several times over the next hour, it still didn't come down where they needed it to but they got permission to go ahead with the infusion provided I would start taking my high blood pressure medication again. So I started taking it that night and the next day when I went back in for my Neulasta shot, my blood pressure was just fine... So either the blood pressure medication works really quickly or there was something weird going on the day before.

This past Monday, July 9, I had my Avastin infusion. My blood pressure was not an issue again which was a relief!

I will say my biggest side effect at this point in this round of my treatments is tiredness and the bottoms of my feet are feeling tender. Some days I have to wear my tennis shoes or slippers around the house so it doesn't hurt to walk. I have a hard time getting up in the mornings - I am not sure if it is because I am not sleeping great at night or if it is a side effect of the chemo treatments. Either way, I have a hard time getting up the energy to get things done some days and it is annoying! One of the side effects of the Avastin is that I wake up every morning with my nose super dried out - to the point where it hurts! Once I blow my nose a few times though it is much better. I have had a few canker sores in my mouth but I have started using a mouthwash that I made with some essential oils and the canker sores that I did have quickly went away and I haven't developed any since! So I am crossing my fingers on that one.

At this stage we will keep monitoring my CA-125 number and I will have my next CT scan probably in another month or 2 to see if the Doxil is working or not. As of right now, other than the tiredness and my sore feet, I feel pretty good and my left leg is feeling better than it has in over a year - although there is still some pain there when I press on my inner thigh.

Friday, November 10, 2017

I had a little bit of nausea last night and just felt a little unsettled in the stomach after dinner. I didn’t throw up though and tried taking one of my anti-nausea pills.

My stomach has been feeling fine today though.

I noticed my hips were a little sore this morning and as the day has gone on, my arms, neck and back have been getting more and more sore! Hopefully it all passes quickly and that I am able to sleep alright tonight!

Tuesday, November 7, 2017

I felt pretty tired last night but couldn’t sleep for some reason. I went to bed at a decent hour but was up an hour or two later and spent most of the rest of the night on the couch not really sleeping - not sure what was going on with that.

This afternoon I went to the clinic to get my Neulasta shot. It was super quick and other than a little bit of discomfort from the injection itself, I didn’t mind it at all. I think overall it was better than having the patch on my arm that I kept forgetting about!

Monday, November 6, 2017

Had my 3rd round of chemo today. It was another afternoon appointment which I don’t care for but I haven’t had much choice about it. Thankfully I just got a regular chair today instead of the bed and didn’t have anything extraordinary happen. I mentioned to the doctor the sore muscles and she suggested I try taking some Claritin for about a week to see if that helps with the soreness. I opted to not do the Neulasta patch this time and want to try going in the next day to the clinic near my house to see which I prefer.

Sunday, October 29, 2017

My sore arms/muscles lasted a few days and then I was talking to my neighbor after church today who is fighting ovarian cancer as well and we were comparing some notes and she says that it is the Neulasta that probably caused my muscle soreness - which makes sense since I didn’t have that side effect before. She said that she had a few days where she could hardly walk because her hips and joints were so sore.

Saturday, October 21, 2017

Have been feeling pretty good overall after my infusion. My biggest side effect has just been headaches and some constipation. Today I have been sore all over though. Whenever I touch my arms especially, they just feel sore to the touch - like I did a big workout but they don’t really feel sore to move.

Tuesday, October 17, 2017

My infusion appointment was late in the afternoon yesterday so I spent the morning doing some things around the house and running some errands. We left a little after 2:00 for my appointment. When they took me back to the infusion room, I ended up being put in a private room with a bed a - which I wasn’t too excited about. It was the type of bed that I had in during my hospital stay and they are really not very comfortable... It took DH and I several minutes to finally get the bed into a position that was somewhat comfortable for me. I was apparently put into the room because the only nurse available to take another patient was one of the nurses back in the private room section. One of the nurses said that people either love the rooms or hate them...

First I had to have labs drawn and my white blood cell count which was too low last time, came one number lower than the acceptable number for treatment. So they had to contact the doctor and she had to give approval to treat anyways. My infusion didn’t get started until after 4:00 and they had to start with the premeds first which took a little while since they had to wait for one of them from the pharmacy. When the nurse came in to start the Benadryl premed she commented that they give me a pretty hefty dose of it so she wasn’t surprised that it knocked me out. She actually set the Benadryl to dispense over 5 minutes so it wouldn’t hit me so hard all at once. I think it helped because it took a little longer for me to feel drowsy and it wasn’t quite as bad. I did still have a hard time concentrating for a little while and I had a little bit of difficulty forming some words while I was speaking.

They finally started the carboplatin infusion around 5:15 and it took an hour for the infusion. A little bit after 6:00 I got concerned that the pharmacy had already closed and I needed some medication refills that I had sent in earlier in the day. I sent DH down to get them and luckily they were open until 7:00.

During the carboplatin infusion, the nurse came in to put something called a Neulasta on-body injector on my arm. It is supposed to administer a drug called Neulasta into my body 27 hours after it was put on. The Neulasta is supposed to help boost my immune system so that hopefully my white blood cell counts won’t get so low this time around. The problem with the drug is that it is not supposed to be administered until at least 24 hours after the chemo treatment or it will counteract the chemo drug itself. So normally people would have to go back to the office the day after the chemo treatment to get the drug administered. With this on-body injector, it eliminates the need to return to the office the next day. I had to watch a little promo video on the injector that explained how it worked and the do’s and don’ts while using it. I had the option of having it put on my abdomen or the back of my arm - I chose the back of my left arm. It is bigger than I thought it would be and is totally visible when I am wearing short sleeves. The nurse applied it to the back of my arm and then after 3 minutes it beeped and then you hear a sound like a rubber band snapping and then a probe/needle pokes into my arm. It didn’t hurt too bad. The nurse said that there is a small plastic tube that will stay embedded in my arm until after the injection is complete the next day. At 27 hours, the injector is supposed to beep and then the needle/probe will go back into my arm through the plastic tube and the drug will be administered over a 45 minute period. After that the plastic tube and needle will detract from my arm and then the injector light will blink red and I can remove it from my arm. Until the injector is activated, there is a green light that blinks on it every 5-10 seconds to let you know that it is functioning correctly.

So a funny thing happened last night when I woke up around 3:30 a.m. I went to use the bathroom and take a pain pill and when I went in there I noticed a green light flash out of the corner of my eye. I didn’t think much of it, but when I came out of the bathroom, I saw it again. And then again and again. I kept turning around trying to figure out what was flashing, but it seemed to come from different locations. Finally I thought I narrowed it down to my closet so I went in there and shut the door and I kept seeing it. So I turned on the light and was looking around trying to figure out what was causing the flashing, when it finally dawned on me that it was the injector on the back of my arm! I it threw me off because I was not expecting the light to be such a bright flash! DH got a good laugh out of it when I told him that story this morning!

Tuesday, October 10, 2017

So I was supposed to have an infusion yesterday but when I went in to see the doctor after having lab work drawn, it turns out that my white blood cell counts were too low and so we have had to delay it until next Monday. So that has simplified this week a little bit for me because there were a few things that I wasn't sure if I would be able to do or not depending on how I was feeling after the infusion. The doctor was pleased to hear that my pain has gone down a lot though and my blood pressure was back to normal - it has been too high lately.

This morning I got a note from my doctor saying she was super happy that my ca-125 number dropped so much. So I went out and looked at the lab results and my ca-125 has dropped from 2002 (3 1/2 weeks ago) to 284. That is a really good sign that the carboplatin is doing its job!

Saturday, September 23, 2017

Went to the girls' soccer games this morning/afternoon and then made some dinner - including homemade french fries! I love homemade french fries! They are totally worth the effort! (Although unfortunately I had to run to the grocery store last minute for a few things.)  Kay made a comment when I was making the dinner that it was good to have me cooking again.

As soon as we were finished with dinner Kitty, Kay and I ran to the church to watch the General Women's Broadcast. There were some good talks - although it is a little hard for me to sit in the church chairs for that long. The weather has been crazy that last few days with rain and cold temperatures! It is almost like we have skipped fall and got straight to winter!

Friday, September 22, 2017

Not too much to report from the last couple of days. I definitely feel really tired in the afternoons! Today my kids had piano lessons that I had to drive them around to for a chunk of the afternoon and I was completely exhausted by the time we were through!

Tuesday, September 19, 2017

Apparently I wasn't running 100% mentally today. I went to the grocery store in the afternoon to pick up a few things and when I got to the store, I pulled the keys out of the ignition and set them down so that I could write one more thing on my list and thought when I set them down that that was a dangerous thing to do. Then I promptly got out of the car and locked the doors using the switch inside the door and closed the door with the keys inside! I realized immediately what I had done. Luckily DH was working from home and I was able to call him to bring me the spare car key...

I haven't really had any issues with swelling today. I have had some stomach cramping, but other than that and being a little tired, I have been fine.

Monday, September 18, 2017

I decided to just take it easy today and try and get the swelling down in my leg. It did look better after last night's rest but was still a little swollen this morning. I did put on a compression sock after church yesterday and wore it until this morning when I showered. I am not sure if it helps or not.

I did several loads of laundry and just sat around chilling. After we had dinner we went for a walk around Oquirrh Lake which was a nice diversion. Overall I still feel pretty good and haven't been nauseous.

Sunday, September 17, 2017

I went to the younger girls' soccer games yesterday and tried to just carry on as normal. Overall I felt pretty good yesterday  - probably just a little more tired than normal. I haven't really felt nauseous since my treatment which is a good thing.

I decided to go to church today but I'm not sure if that was a good call or not. My left leg started swelling up pretty bad while I was there and it was pretty swollen by the time I got home from the 3 hour church block. Then our home teachers came over and then we went to my parents' house for dinner. Overall I think I overdid it for my leg a little. I think some of it is the fluid that they gave me for the infusion that has pooled up in my leg again. It makes things pretty uncomfortable and doesn't look too pretty!

Friday, September 15, 2017

Had my first infusion this morning. I was given a bunch of premed through my port before the chemo drug was given. One of them that they give me is Benadryl and it knocks me how within just a minute or two of giving it to me. I told the nurse this before she gave it to me and then after she came and brought by some paper work to go over and I was having a hard time paying attention/staying awake. She asked me at one point if I was alright and I said that I was just getting really drowsy - I think she was completely surprised with how quickly it knocked me out. She came back later and said that I am a pretty light-weight if it takes me out that quickly! I pretty much just went in and out of sleep during the whole infusion while DH did some work on his laptop across from me. Other than that I was just tired the rest of the day and didn't do too much. We had a family in the ward bring us a meal that evening which helped as well.

Thursday, September 14, 2017

I've been slowly getting back to normal activities but unfortunately my back/hip pain is pretty intense at times. It is making it hard to sleep at night. I finally broke down a couple of nights ago and took the stronger pain medication that they gave me after I left the hospital. It worked great and I was able to get a few hours of uninterrupted sleep!

Yesterday I met with my oncologist and we came up with a plan of treatment for me. I will be receiving chemotherapy treatments every 3 weeks with just one drug initially. We will see how the cancer responds to the drug and if we feel it is necessary, will add a 2nd drug and then move the infusions to 4 weeks apart. The thinking is that since my body responded so well to this drug the first time around, they are confident/hopeful that I will have the same outcome this time around.

DH came with me to the appointment and we were there for quite a while going over everything and also discussing managing my pain. They gave me some more of the strong medication as well as some anti-nausea ones for when I have my infusions. Right now I will be on the infusions indefinitely - as long as my body is responding well and it is keeping the cancer in check. They were unsure if there would be a need for another surgery because where the tumor is located makes it inoperable at this point. We asked why it didn't show up on the scans and they said that unfortunately that is common - the cancer in that location appeared to be somewhat flat and wrapped around a blood vessel which made it hard/impossible to see in the scan...

My first chemo session is scheduled for tomorrow morning at 8 a.m. I was initially thinking that they could do the infusions at the clinic near my house but they will want to see me before each infusion so it makes sense to just do the infusions downtown at the main building. Plus, they said that the main clinic is more setup to handle any adverse reactions or complications - which apparently with the drug that I will be on - tends to happen on the 8th exposure to the drug - which will be my 2nd infusion this time around.

They will monitor how my body is responding by monitoring my CA-125 levels as well as period scans - probably after the 3rd or 4th cycle.

So, wish me luck for tomorrow!!

Saturday, September 9, 2017

Well, things are slowly improving and it is getting easier to do things. I still get pretty winded walking places but managed to go to both of my younger girls' soccer games this morning and then was able to sit through our adult session of stake conference this evening (2 hrs long). My biggest issue with going places is that I don't have a lot of clothes that are comfortable to wear for me right now. I still have quite a bit of weight/fluid/post-surgery stuff around my mid-section (I look pregnant...) so my clothes need to be really loose around the waist. I think with my last surgery I still had maternity clothes that I think I wore afterwards. Unfortunately I have been trying to lose some weight recently and have been getting rid of clothes that were too big.

Unfortunately my old back/hip/leg pain came back last night so I wasn't able to get a lot of sleep because I just couldn't get comfortable. I may have to start taking some of the stronger pain medications - which I have been able to avoid up to this point. The heating pad helps some with the pain. I finished both of my antibiotics today so hopefully whatever bacterias I had are gone now. My left leg - especially around the ankle area is still swelling up some and it is kind of annoying.

Wednesday, September 6, 2017

The last two nights haven't been too bad other than the fact that I have to get up every hour or two to use the bathroom! I think it is all the fluid that they filled me with at the hospital and that just happens after a surgery that just seems to want to drain itself at night while I am trying to sleep.

I wore a compression sock on my left leg most of the day yesterday and last night and my leg is finally going down in the swelling which I am grateful for. My leg and foot have been about double the size of my right and it has been quite uncomfortable. My left thigh feels bruised all over though.

Today I was able to get more done and am able to move around a little easier. DH went into work today for the first time since my surgery so I was on my own for the day. I had an appointment at the clinic not far from our house this morning to have some labs drawn. So I drove for the first time and didn't have any problems getting to and from the clinic. I am able to manage my pain pretty well and can tell when things are wearing off or if I have overdone things a little.

Monday, September 4, 2017

Happy Labor Day! I slept alright last night. I get up several times a night to use the bathroom or to take some acetaminophen. It is still hard to move around in bed and I feel bad if I move too much because I don't want to disturb DH's sleep.

My parents invited us over to dinner at their house tonight but I really didn't feel up to going so I sent the family and stayed at home. Other than that, not much to report.

Sunday, September 3, 2017

Wow my bed felt nice last night. And it was so dark and quiet! I definitely missed that while at the hospital. My first night at home went alright. It is so hard to do anything - even roll from one side to the other while in bed. It is amazing how much you use. Your abdomen muscles without even realizing it.

DH gets to give me Lovonox shots (a blood thinner) every night like with my last surgery. They sent me home with 2 different pain medications, 2 antibiotics, an anti-nausea drug and a stool softener - although I had told the doctor that I didn't need that one since I already have some that I bought over-the-counter. So far I am hoping to only have to take the ibuprofen that they prescribed and then some over-the-counter acetaminophen for pain. When I left the hospital I was down to just taking the acetaminophen and occasionally some ibuprofen - especially at night.

I got up somewhat early today to get the kids up and ready for church. I will stay home today. I am holding off for a bit to allow my ab muscles to recover some more and my leg is still so swollen - I want to keep it elevated as much as possible.

I spent most of the day today just relaxing. Overall I fell alright - all things considered.

Saturday, September 2, 2017

Saturday morning one of the doctors came in to see me and we talked about me going home later that day. She said that the CT scan looked good. I was switched to oral antibiotics and they want to monitor me on them for a bit before they feel okay releasing me. Also, apparently my white blood cell count was slightly elevated that morning so they wanted to draw another set of labs that evening and then let me know if i can go home after that. She said that they wanted to monitor me on the antibiotics for 24 hours but she could maybe be persuaded to only do 12. I asked her if they would remove my stitches before I left and she said that they could - usually they wait about 10 days and take them out at a nurses' flow-up visit, but since I have been here 11 days they could do it before I go home.

I was incredibly bored all day on Saturday... First of all there was absolutely nothing on T.V. worth watching so I read a lot and just sat around hoping that my counts would be good later that day. I took some time to start packing my things in hopes that I would be released.

So they came and drew labs at 5 p.m. and then I ordered some dinner and waited. The doctor apparently tried to call my room but I never heard the phone ring, so she called the nurse who brought me the phone. The doctor said that as long as I was feeling well, I could go home!! Yea!! I quickly let DH know and then the nurse started to make preparations for my check-out. She came and removed my staples - which hurt a little bit - and then she said they were preparing the check-out information that they needed to send home with me. Unfortunately we were now at the nurse change-over time so I would have to wait a while until the new nurse could come and go over the info with me and deaccess my port. And they also had to do a last round of vitals - blood pressure, heart rate, temperature and oxygen level.

DH and a couple of the kids showed up to take me home but we ended up waiting probably over an hour before I was finally able to be released. They had to send my prescriptions down to the university hospital because the pharmacy at Huntsman was already closed - and the one at the university was open until 9 p.m. I ended up sending DH down to get the prescriptions because we were waiting so long for the nurses. And he ended up making it back up almost to my room before I was finally ready to go.

It felt nice (and weird) actually putting on real clothes. I have worn a hospital gown for way too long now. DH had to help me with my socks and shoes - it is hard to reach my feet right now. Plus, my left leg and foot is incredibly swollen - we had to loosen my tennis shoe a ton just to get it on.

It was definitely nice getting outside for the first time in 11 days. The ride home was uneventful and as soon as we got there I had to say goodbye to my oldest who was on her way down to BYU for her sophomore year.

Thanks to everyone who helped out my family while I was in the hospital. I know we all greatly appreciated all of the love and kindness that we felt.