Monthly Archives: July 2011

Birthday Extravaganza!

Birthday Extravaganza!

Written Jul 31, 2011 12:40am

When I was in the hospital on my birthday, Branden was planning a “birthday extravaganza” for me (as he called it!).  I have been home over a week now, and am feeling better each day, so we decided to do something fun this weekend for my birthday.

This week I think my body has been in recovery mode.  I feel hungry all the time and still tired a lot too.  So basically, I eat and sleep a lot!!  I have had a few days when I wondered if I was getting sick again.  I was tired or dizzy a lot.  But then the next day I would feel great.  Overall, I am feeling better each day, and am so happy and excited to be feeling well and to be home and enjoying my family and friends.
So yesterday after Branden got off work we left for Park City to begin my “birthday extravaganza”.  We went out to eat, and drove around Park City a bit.  I was feeling very dizzy and tired, and I was frustrated about that because I wanted to feel good for our fun weekend.  So we stayed at a hotel, ate some dessert and watched a movie.  It was so fun.
Then we decided that we both had not been getting enough sleep lately, so we each took a sleeping pill.  (We don’t normally do this, but felt that we really needed a good night’s sleep.)  I guess it really worked, because we slept in until about 10AM!!  We got a late start on our day, but then we went to a delicious little restaurant on Main Street in Park City and ate some amazing french toast with carmelized bananas and strawberries on it.
I am telling you, I have become a pig since I left the hospital!!  It feels so good to be able to eat, and I feel better when I eat a lot each day.  I have probably gained about a pound back each day since I left the hospital!  I am still about 5 pounds under my normal weight, but I probably better slow down the pigging out a little!
After our fun brunch, we went to the outlet malls and shopped for hours.  We found some great bargains and basically we each got new ward robes!!  It was fun, and great weather to be walking around outside.  I felt so good today.  I was surprised that I was able to walk around for so long and feel good all day.  I guess shopping gives me power!!!  (Maybe the super long sleep and all those calories from the french toast had something to do with it too.)
We decided to finally come home this evening.  My niece was watching our kids, and it was fun to see them after being away overnight.
I should be able to go to church tomorrow for the first time in several weeks.  That will be nice, and great to see people.  I have loved seeing some friends this week.  It is great to see people after living in the hospital so much lately.
I received a beautiful blanket from some church friends in San Diego.  It was a quilt that they had made that had some encouraging words on it as well as signatures of many of my friends.  I was also sent some nice cards.  I almost started to cry when I read the words on the quilt.
I am continually amazed at how many people are willing to serve my family and help us in so many ways during this time.  I am just so grateful for all of you.  I have received so many cards, little gifts, meals, visits, childcare, and other services since I have begun chemo.  Many times I have turned down help that has been offered to me just because we have already had so many other people who were lined up to help us.  It is all from friends and family members who just decide to care about me and my family, even though they have plenty of stuff going on in their own lives to keep them busy, I am sure!!
I am thankful that I am feeling so well now.  I have a list a mile long of stuff I need to get done after being so sick these last few weeks.  I am trying to get stuff done, but I can’t catch up all at once.  I am just glad to be home!!!

Home and feeling well!!

Home and feeling well!!

Written Jul 26, 2011 11:24pm

I spent one week in the hospital, and got home last Friday.  My mouth sores are almost all the way gone, and I can finally eat again.  This has helped a lot in my recovery!  And, I missed eating!!  I think that having the nutritional supplement in the hospital was what finally helped me turn a corner and start getting better.  I wish we would have done that the first time I was in the hospital.

The last few days I was in the hospital, I felt so emotional.  I missed my family so much, and just wanted to be well and home with them.  When Branden came to pick me up with the kids, I felt like I hadn’t seen them for so long.  The kids were so happy to see me, and Macy just kept looking at me and laughing the whole way home.  It was so cute!!  When we got home she climbed up in my lap and we played baby games for about an hour straight.  (That is a long time for peek-a-boo and other similar games!!)
Lily and Max were quickly taken by Fenja, my niece who has been staying with us and taking care of the kids.  She took them to St. George (4 hours away) for the weekend.  She went to her parents house, and my sister watched them while she was able to get a little break and work on some of her summer classes.  They just got back today, and it was so great to see them again.  Although, I must say that our house is much calmer without them here!!
Over the weekend I sometimes felt tired or dizzy, and was often scared that I was getting sick again.  Fortunately I was not getting sick.  I have felt better each day, and felt really good all day today.  I think I am finally done with the hospital for a while.
I had a doctor’s appointment today and found out that my white blood cell count is continuing to go up, and all my other numbers were looking really good, so I am really finally getting better.
We have a new plan for chemo.  My doctor seemed to feel like it was very serious that my white blood cell count was so low for so long, and that I got so sick.  She kept telling me that she was so glad to see me looking so much better and feeling so much better.  She gave me the option of either quitting chemo to avoid these serious side effects, or continuing chemo with a different regimine.
Rather than 4 more rounds of chemo 2 weeks apart, I am now going to do 12 more rounds of chemo every week at a lower dosage.  This will make the chemo take a little longer, but should be just as effective as the other treatment, with less side effects.  I am anxious to get done with this stuff, but I also don’t want to be scared that I am going to go back into the hospital, or get super sick or something.  It would probably be very likely that I could end up hospitalized again if I do the original plan.  I feel like I have tried so hard to be mentally tough through all of this, but my body sort of wimped out on me!!
I want to do what is best to treat my cancer, and I don’t want to just opt out of the rest of chemo to make life a little easier on me now.  It is kind of funny that I had the option to be done with chemo and I chose to go forward with it, but it is the smartest option long term, and that is what I care about.  As much as I want to be done with treatment, I want, and need, to do it right.
I will start chemo next Tuesday.  My doctor felt that I would not be quite ready this Friday, so I will start on Tuesday.  That will give me the weekend to feel good too.  Maybe Branden and I can finally celebrate my birthday!
I am just so happy to be home, and happy that I really do feel better this time.  Thank you so much for the prayers and encouraging messages I have received from so many of you while I have been in the hospital.  I am so grateful for wonderful friends and family!!!

Birthday at the hospital!

Birthday at the hospital!

Written Jul 19, 2011 11:51am

Well .. . . . staying at home didn’t work out as long as I had hoped it would.  I was really never better.  I wanted to be home, but I still couldn’t eat because my mouth sores were just as bad as ever, and I was slowly losing weight, and losing energy each day.  I tried to get up out of bed in the morning, and it would take me several tries because I was so light-headed.   I had to sleep frequently throughout the day, and I just wasn’t getting better as I had hoped.
I assumed (and the doctors told me) that my mouth sores would get better each day, but they weren’t, so it was impossible each day to get the nutrition I needed in my body to feel good and to just function.  I loved being with my kids, but I couldn’t really take care of them at all.
Finally, that Friday, I had a doctor’s appointment to see how I was doing.  After taking my blood work, I waited for my doctor.  When she came in she was reviewing the results of my bloodwork.  I assumed that the white blood cells were going up as they had been when I left the hospital.  Instead they had plummeted!  I knew that I didn’t feel great, but I didn’t know the bloodwork would confirm it.
The Dr. said, “We are going to need to incarcerate you.”  I said, “Like right now?!”  She said, “Yes.”
My niece was with me, so she was able to drive the van home and be with the kids while I stayed here and get into a new room.  I kept thinking about how it was my birthday the next day for some reason.  I had imagined that I was going to feel good by this weekend, and that I would have a fun birthday weekend with my family and still have about a week before I had to start chemo again. Now, I am still trying to get recovered from this darn chemo that seems to have blown my brains out or something!!  I can’t believe how hard it is for me to recover from it.
I am now on a nutritional supplement that is being fed right into my body.  It has all the nutrition and calories I need in a day.  That makes me feel good because I have felt so much pressure for about 5 weeks to eat and drink enough, and I haven’t been able to do it with these mouth sores, so I have just been losing weight and getting weaker.  Now I can just sit back and let that bag feed me for a while!!  (Although I would love for my mouth to just heal up so I could eat!!!)
Yesterday I had to have a bone marrow biopsy to make sure that there is not a problem in my bone marrow such as leukemia or something.  It was not a fun procedure, but I got lots of pain meds for it.  I am hoping that everything is fine with my bone marrow, but that it is just tired and that’s why it’s taking a while to grow.
In the meantime I am just sitting in this hospital room bored and wishing I could go home.  I have had a few visitors.  Last night Branden brought a video and came up by himself and we had a little movie night in here.  That was really fun!!
I have the best family and can’t wait to get home to them!!

Home

Home

Written Jul 11, 2011 11:11pm

I am finally at home now.  I came home Saturday evening.  I don’t know if I really should be home, because I still am having fevers like I did at the hospital, and I still have mouth sores and can’t hardly eat.  I don’t know why it is taking so long for me to recover, but I am glad to be home.  I missed my family so much!!

PET scan results

PET scan results

Written Jul 8, 2011 11:02pm

Yesterday was the day I had my PET scan.  Branden took off work and came for moral support.  I am still in the hospital, so when it was time for the scan I just had to go down the hall.  It was funny that they told me to “fast” for 12 hours before the PET scan because I have basically been fasting for a whole week now!  But this time I was supposed to not eat.  Before the test I had to drink a nasty sweet drink that basically attracts the cancer cells to it.  Cancer likes sugar, and so the PET scan shows the areas in my body that are metabolizing the sugary substance I drank, and it glows on the scan.

I have been anticipating this PET scan ever since I started chemo, because it is the halfway progress report on how the chemo is working.  It really varies for everyone who is in chemo, and it all just depends on how well your body reacts to that specific type of chemo.  I have felt like the chemo is working, but I still felt very nervous, because the last time I had a PET scan I had terrible results which showed that my cancer had metastasized to two spots on my spine and one on my pelvis.  That was when I was categorized as having Stage 4 breast cancer.
For the scan I was strapped inside a big round white tube that moved my body back and forth while I had to lay perfectly still inside.  Occasionally a voice would tell me to hold my breath and then to begin breathing again.  This lasted for about 25 minutes, and then I was done and went back to my room.  We were not sure if we would get the results that day or not, and I bugged the doctors and nurses a few times to find out if my results were back in yet.
Branden had to leave before the results came in, but when the doctor came in to go over the pictures and report of my scan with me I called Branden and had him on speaker phone so he could listen.
The results are very positive.  We looked at the pictures of my old PET scan on one side of the computer and looked at the pictures of the new scan on the other side so that we could have a good comparison.  They were basically looking at four main areas:  The original site of my cancer and lymph nodes that was removed during surgery, the two places on my spine, and the spot on my pelvis (which had been the biggest spot before).
The site of my original lump and lymph nodes showed no cancer at all.  I hadn’t really been worried about that area, but it is possible to have a recurrence there, so that was good that it was clean.
Next we looked at my spine.  I looked at the old scan and saw the two spots that lit up showing the cancer on my vertebrae.  On the new scan the whole spine looked just the same.  There was no sign of any vertebrae glowing any brighter than any of the others.  We found the exact spots where the cancer had been, and there was no evidence of cancer there at all.  Another part of the scan showed healing tissue in those spots, which is further proof that the cancer is gone from my spine.  I was so happy I didn’t even know what to say, but I was still feeling very serious as we looked at the spot on my pelvis.
To me it looked like there was a very faint glow in the spot that had been very bright on the previous scan.  The doctor said that the amount of glow could actually just be from tissue that is healing, and they did not count it as cancer, although they cannot say for sure that there is not still a little bit of cancer in that spot on my pelvis.
The results of this PET scan are everything we could hope for.  The report stated that there was no evidence of the disease at this time, however the doctor reminded me several times that this did not mean that I am cured.  It also does not mean that there is not still some cancer out there, because the PET scan can’t pick up everything, but the results do show that the chemo that has been annihilating me has also been annihilating the cancer!!  That’s what I wanted to know.
I went back to my hospital room talking to Branden on the phone, and both of us were finally able to let go of the tense feeling we had had all day awaiting these results.  I cried of course, because I am just so grateful that this is working.
The doctor came in this morning and reminded me again that I was not cured, and that I need to continue treatment, of course.  He also reminded me that Stage 4 breast cancer is not ever considered curable, and that we were just trying to make sure that I was able to live as long as possible.  I’m not sure at all why he felt the need to put a damper on the very positive results that we got from the scan, but for some reason he did.  (This is not my normal doctor that I go to, just the one who is taking care of me while I am in the hospital.)
But later my doctor came in for a visit.  I told her of the pessimistic spin that this doctor put on my awesome PET scan results, and she made me feel a lot better and told me that we have every reason to celebrate and to be optimistic.
I am so so happy that the 4 rounds of chemo I have done so far have been effective, and I am certain that the next 4 rounds will get rid of any remaining cancer that is lurking in my body anywhere.  And I don’t care what that doctor says, I am planning on being cured!!!
For now, I am feeling a little better each day.  I still can’t believe the beating my body took from this chemo, and that I have had to be in this hospital for over a week now.  I miss my family so much, and I am hoping I can go home tomorrow.
Next week my doctor does not want me to do chemo again.  This is fine with me.  She wants me to get feeling completely better before we get going on the final four rounds.  She said that she does not think the next type of chemo will be as hard on me as this has been.  I should have the hardest part done with.  I am looking forward to getting home soon and having a couple weeks of feeling good!

In the hospital

In the hospital

Written Jul 7, 2011 12:51am

Since my last entry I was not getting any better.  I came to the hospital twice that week because I was feeling so weak, dizzy, unable to eat, and just sick in general.  Once they hooked me up to an IV for a few hours, but then I wondered how that was supposed to help me once I got home and still was unable to eat and drink enough on my own?

I really tried hard to do what I needed to to get better. I got anything that I thought I could possibly manage to eat or drink, but even swallowing water just KILLED my throat!  In a normal day I would take about 3 hours to choke down a glass of Ensure or chocolate milk to try to drink in some calories, I would drink a glass or two of water, and I would maybe eat half a piece of bread for the rest of the day.  That just wasn’t doing it, and I was feeling worse each day.
Finally my nurse decided to check in on me last Thursday before her shift ended.  I told her the things that were bothering me (mostly my mouth and throat sores), and that I had vomited that morning, and that I had no energy.  She assured me that those were all normal chemo symptoms.
Then at some point I mentioned that I had taken my temperature and that it was 102.2.  That’s when she really started listening and told me that I should have called her right away.  She said that when you are in chemo and your white blood cell counts are as low as mine were, you just can’t get a fever or you have to come into the hospital.  She called another doctor and he confirmed and said that they felt strongly that I needed to come and be admitted right away that evening.
I knew I should be in the hospital, so I was glad that she had followed up with me and that hopefully they could do something for me.  Last Thursday night I was admitted to the Huntsman Cancer Hospital, and I have been here ever since!  I have not had my computer until today.
Since being up here I can see how much I needed to be here.  I had all sorts of infections in my body that I just couldn’t fight off due to basically no white blood cells.
On Saturday they gave me a blood transfusion and I received 2 units of blood.  That was a very positive thing, and I can tell it has helped my energy already.  White blood cells just have to be made by me in my own body though.  While I am getting a bunch of IV antibiotics, my body slowly started making some white blood cells on its own.
The last three mornings my white blood cell count has improved.  This is very good.  My mouth and throat sores are still here, but getting better for sure.  The whole time I have been here I have not had anything to eat until today when I had 4 bites of a waffle, but it just hurt my mouth too much.  I have had a smoothie and a milk shake over the last two days too though, so that is improvement.  I bet by tomorrow I will be able to eat and drink much better because it seems like my mouth and throat are really starting to heal now.  HALLELUJAH!!! Before I can go home, I need to stop getting fevers every day, and I need to be able to eat and drink a little better.  I think those things will happen really soon.
I miss my family a lot.  They came to see me tonight and I wanted to hold each kid, but they aren’t allowed to touch me right now.
Tomorrow is a long-anticipated day for us.  I will be getting my PET scan to see how the chemo has effected my cancer so far.  I am so hopeful that we will get good news about this.  I know that there is still more and different types of treatments to come, but I would really love to know that all we’ve been through so far has been worth it!!  I’m optimistic, but still scared.  I am trying really hard to be braver.  I think we will find out the results from it on Friday.
I am going to sleep now in my comfy hospital bed with a bunch of crazy wires coming out of me, while nurses come in to do stuff to me throughout the night!