SolandMonica.com

The past few days have been a whirlwind.  Sometimes I wonder if I’m dreaming.

I can’t post too much detail because I want to make it back to the hospital as soon as I can.  I didn’t have the strength to stay with Monica last night, so I stayed at my cousin’s house for a decent rest.  Monica gets up about every 45 minutes to go to the restroom or take pain meds or talk to a docotor, etc. and after several nights of that, I felt like I wouldn’t be her best support person; I was afraid she might need something and upon calling me I would just sleep through it.  A changing of the guards was in her best interest even though it hurts me to not have been there for her.  Her mom stayed instead, so I know she was in good hands.  Even though I was tired, I had a hard time falling alseep and I still feel like I got hit by a truck this morning.

The doctor’s switched her pain meds yesterday from morphine to dilaudid, and she seems to be doing better with the dilaudid.  she is a little more coherent, and her pain seems to be managed better.  She also has a fentanyl patch which started at 25 mcg and has been raised to 100 mcg in small increments because they were having a hard time managing the pain for a while.  The doctor at the hospital told me that he thinks she has been in a lot more pain than she was telling us, because the kind of pain that comes from her condition is intense.  He thinks she was trying to be brave for our sake.

Monica has definitively decided to keep on fighting, so please keep praying for healing and strength.  She doesn’t want to give up, so we are not going to give up on her either.

I saw how many people signed up to follow her on Twitter recently, so I’ll try to post as many updates as I can.  Once I leave my cousin’s house for the hospital, I still won’t have internet access though.

One more thing… thank you to everyone who has come to visit.  I’m sorry I haven’t been able to answer everyone’s questions or speak to everyone.  Like I said, it’s been a whirlwind.  But we really do appreciate the support.  Monica and I talked last night about how amazing our support network has been.  You guys all really do make a difference.  Some of you deserve medals for everything you’ve done.  If I tried to list everyone, I would be here for another hour or more.

Please keep up the prayers and the hope.

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I’m home for a quick shower and update.  The doctor’s goal for Monica was to find the right dose of pain meds that would manage the pain and still allow her to be functional.  Last night, however, her pain escalated significantly in her lower back where there are new tumors in her spine.  The pain that brought her into the ER at the site of the liver was still significant as well, so after a long, painful and sleepness night (I thanked the nurse for her patience) they gave her Dilaudid which is a lot stronger than what she was getting.  Unfortunately, this makes her even more groggy.  The sleepness night doesn’t help either.

I’m not sure what the plan will be at this point.  We have to wait and see what the doctor wants to do next. 

Visitors are fine for a short stay.  Longer stays tend to accumulate more people and it gets loud and crowded quickly.  Monica may not be all that responsive though, so if you coordinate to come together with a couple people it might be better than waking her up multiple times.  I think she appreciates seeing people though.

Thanks again to everyone for their continued support and prayers.  We love you more than you know, and you’ve all given Monica more strength than she could have without you.

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This is Sol.  I ran home quickly to get a few things so I’ll make this post short.  Monica has been in the hospital with a lot of pain for the past two nights.  We’ll be there tonight too.  The tumor in her liver has grown to 22 cm (almost 9in).  I don’t have internet access in the hospital, but I’ll be posting updates through Twitter which you can read on the front page of the site here to the right.

If you are a praying person, please pray now.  The doctors said we need to prepare for the worst.  Monica’s family is coming in from Northern California and Washingon DC.

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I just received a phone call saying that I will be having a blood transfusion.  I guess that means my count is still low and that it maybe even went down a bit from last week.  They wanted me to do it right after chemo today, but that’s just too much!  So tomorrow morning around 8:30 I will report to the Short Stay floor at my “favorite” hospital for my second transfusion – two more units.  Please pray that the experience will be much better than last time.  I am scared to have them access my port at all, so I am going to see if I can stop by my chemo office and have them stick me instead.  Thank you for your prayers.  If I feel up to it and am not knocked out tonight, I’ll let you know how Navelbine #4 went.

 Thank you to all of you who donate blood – you are saving lives and helping people like me get and feel better.

Much Love,

Monica

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Ok so the transfusion itself wasn’t 9 hours, but we were there for 9 hours.  We arrived at 8:30, and they took my vitals…whoa…I must have been really nervous!  My beats per minute were 121, and my blood pressure was 130 over 80.  I’m usually 80 beats a minute and 95 over 60.  Crazy!  

Anyway, they wanted to access the port, so the nurse came in and stuck the needle in the port.  No blood return.  She pushed harder and wiggled it around – OUCH – trying to get blood.  She took the needle out and tried again, pushing harder this time.  The pressure in my chest was very painful.  Still no blood return.  They decided that maybe it was the needle, so a nurse goes to get another needle.  Meanwhile I am crying because it’s hurting so badly – this is supposed to be the easy part!  The nurse came back saying they didn’t have anymore of the special needles for my port.  I was about to flip out!  This hospital is not getting great reviews from me!  It’s been a bad experience most times I’ve been there.  Well they found the supply of needles and poked me again, this time it worked!  We had blood!  Finally!  They hooked up the bag of blood and we were off and running.  I was told by my doctor that it would take about 2-3 hours per bag…the first bag was 3 1/2 hours as was the second!  It was ridiculous!  I guess since it was my first time, they wanted to be careful.  It took so long.  Martha and I watched 2 movies and looked through a home magazine dreaming of what we would do to a house. 

When we were done, the nurse took the needle out of the port. She pushed on it as if it were a regular IV, and she needed to stop the bleeding.  Ports really don’t bleed much and don’t need the pressure.  That was the most painful thing all day.  After all the prodding and poking earlier, my chest was really sore and that pressure put me over the edge.  I was all tears and told her not to touch me!  I couldn’t believe how much it hurt.  The nurses really don’t have much experience with PowerPorts because they are still so new and not too many people have them.  They just don’t have the experience with them to know everything.

When I finally left the hospital, Martha said that I had more color.  I’ve been pretty pale – yes, paler than usual – the past two months.  Sol said this was the most color he’d seen in my face in months.

So that was the experience…It would have been pretty easy if the port thing didn’t happen, but we’re past that now!  I’ll be starting chemo on Monday at 2:15.  I was told it will only take about 30 minutes.  That’s a lot better than the 4 to 6 hours it took with the other ones.

Some fun news, we are going to have family pictures taken tomorrow.  A lady in the church takes portraits for a living and wants to take family photos for us at no cost!  I am excited!  

Well on that note, I should get some beauty sleep on my beautyrest mattress for tomorrow! 

Thank you for your prayers and your encouragement.  Who knew so many of you have had transfusions?  You helped me, and so I thank you.  Thank you to those of you who donate blood as well.  You are helping people like me. 

Happy Weekend!

Monica

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I’m going to try to keep this brief because it’s almost 2 am.  As you know, Monica has begun feeling pain in her right torso area from the back to the front.  She’s been a trooper all week (you know how she has a high tolerance for pain), but it got really bad tonight.  I called her oncologist because I had never seen her like that before.  He wanted to make sure it wasn’t a rare side effect from the Avastin, so he recommended I take her to the ER just in case.

Long story short, they didn’t find anything like the bowel perforation side effect that her oncologist was worried about, so in a sense that’s good news.  The ER doc thinks that it is a multifaceted issue where the tumors are growing in the liver making it tender and constipation is putting pressure on it.  The bad news is that they sent us home while she continues to have intense pain.  They prescribed her pain meds, an enema, and stool softeners.   I’m going to take the day off from work tomorrow to take care of her, because the pain limits her mobility.  Good night.  Thanks for all your prayers (especially for HMO approval; we’re still waiting and according to the CT scan she got tonight, the tumors are growing).

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Today at chemo I guess there was good news. My doctor went and looked at the scan at the hospital and after comparing the largest tumor, found no change. That was what he was hoping to find (that or shrinkage). He says that it is not out of the ordinary to see a scan that shows good shrinkage and then a stable one. He thinks that the growth shown on the smaller tumors could be human or imaging error and not to worry about it. It was good to hear, but I’m still unsure. The one that showed up on the spine was not imaged in the July scan or the September scan. They didn’t go that low. It is new since March, but so is everything else.

I think that Sol and I might make an appointment with another oncologist just for a second opinion. Sol’s boss says that this other oncologist is known for being “creative” in pursuing treatments. Another thing we will do is send my scans to two facilities for further review and 2nd opinions. None of this could be bad to do.

As for our eating change. It’s going well for me, but last night was quite eventful. After playing video games at a friend’s house, Sol came home presenting symptoms of diabetic shock. He was shaking, cold to the touch, about to faint, vomiting, and much more. His temperature was only 92 degrees. Sol woke me up (it was about 11:30 pm), and I called a nurse’s hotline. She said to call 911. I gave Sol some pedialite and M & Ms. When the paramedics got here, he looked and felt like a different man. He was doing much better. They tested his sugars and said they were fine, and they did an EKG and said he was ok. Since he wasn’t presenting those symptoms anymore, they said if it came on again that I should just drive him to the hospital. So about 10 minutes later, he started feeling bad again. So we called a friend, Sunshine, to come stay with the sleeping Kai and went to the hospital. They ran a bunch of tests and started a saline iv. It turns out that it was a very bad case of dehydration. After two liters of saline, Sol was feeling much better. All the blood tests and x-rays came back normal, so we came home about 4 am. We’ll take turns sleeping today. Since Sol was in the hospital, he goes first!

I am tired, but know that I’ll have my turn sleeping soon!

Love to you all,

Monica

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Well, I’m finally home! It took a while for me to meet all the discharge requirements, and then when I did, it took a while for them to get all the paperwork and wheelchair ready. Yesterday at about 6:30 pm, I walked through my apartment door. It was nice to be home and see my little guy! I slept in my own bed and wasn’t woken up every two hours for blood pressure readings.

Today I had a home health nurse and physical therapist come by to make sure things were going well. They’ll be back a few times to get me going with exercises and to make sure that I have healed correctly. I am thankful to have them coming by my house and available to answer any questions I might have. Also, today I received a mastectomy garment. I didn’t even know those things existed. It has special pouches for the drains (right now they are taped to my body and pinned to my shirt). Hopefully it’ll be the best thing since high-speed, wi-fi, 10 gig downloads. 🙂

Well, the next step is an appointment with the surgeon on Thursday (at 1:30), where the drains might be removed. I’ll be glad to have those gone. Emptying them is pretty disgusting! (Thanks, Mom!) When those are gone, then I’ll feel like it’s finally time to really recover. The radiation oncologist will be calling this week to set up a consultation appointment. I can’t believe how fast everything is going to go. In about six weeks, I’ll be starting radiation, and then six weeks later it’ll all be over. Then it’s time to PARTY!

Thanks for all the visits, emails, encouragements, gifts, card, yummy treats, dinners and prayers that you all have been sending our way. We are truly blessed and feeling very loved! 🙂

By the way, the encouragement board glitch fixed itself. Hopefully there will be no more spam.

Love to you all,

Monica

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It’s already the day after surgery, but I still feel like we should record the events of the day yesterday so I will continue where I left off last night.

Part 2:
I hadn’t gotten up as early as 5:00am for a while, so that must be why the coffee at Marie Calendar’s seemed to taste especially good that morning.  I’m really thankful that my grandma and aunt were there to distract me; I didn’t need the time to go any slower than it already was going.  Secretly I was hoping that we would be there eating breakfast long enough that upon heading back to the hospital, Monica would be out of surgery and ready to be seen.  Apparently that wasn’t the plan.  She was supposed to start surgery at about 7:30am, and my excitement about her getting in a half hour early turned into concern when it turned 10:30am and we still hadn’t heard from the doctor.  They told us the procedure would take about an hour or and hour and a half.  10:30am made it about 3 hours!  Fortunately a friend from our Sunday school class who is a nurse at the hospital decided to visit us in the waiting room that morning and found out how long we were waiting.  She made a few phone calls and got word that Monica had just entered the operating room!  At least we were able to relax knowing that nothing was wrong.  Thank you so much, Rachelle, for coming to visit that morning.  By the time we got a call to see Monica it was after 1pm.  That would have been a really long time to wait without any word of her condition.

In the meantime Monica’s parents joined us in the waiting room after dropping Kai off at day care.  We were visiting with some other friends who came to visit and were getting hungry.  All of a sudden I got a text message saying, “Do you want Italian, Mexican, Chinese, or American for lunch?”  My friend’s wife from my men’s bible study wanted to bring us lunch.  It was God’s timing.  Monica’s parents decisively craved Chinese food, so it was broccoli beef and shrimp with snow peas for lunch.  Just as Catt got there with the food we got a call to see Monica.  Catt waited for us in the cafeteria. 

My stomach turned when we walked into the room and saw her.  She was sleeping, but she had a look of pain on her face.  I wasn’t sure whether to gently wake her to give her some support and encouragement, or to just let her sleep.  The nurses decided for us as they walked in and told us she would be moving to her own single room.  It turned out that our nurse friend made a few more phone calls and made sure that Monica got the next single room that opened up.  Since Monica was still groggy, we got a chance to go down to the cafeteria and eat.  By the time we came back up, she was more awake and ready to receive all our love.

The rest of the night was filled with people showering her with love and support.  She’s received some of the most beautiful flowers we’ve ever seen.  Some friends brought by chick flicks and cookies.  Some other friends even brought me shampoo, a tooth brush, and some pajamas.  Monica had a craving for frozen yogurt and someone brought that by too.  We have been blessed by you all so much and are forever grateful.  We can’t express how it has really made a difference to have people in our lives who care so much and who are willing to help.

Later in the evening Monica’s folks brought Kai in to see her.  He seemed a bit confused at first, but was excited to see us.  One of the first things he did was to walk up to the side of the bed and raise his hands up to Monica asking her to pick him up.  It was a little bit sad, but cute at the same time.  I quickly tried to distract him with a little bag of graham cracker cookies that someone brought, knowing that Kai would love some cookies.  He took the first cookie that I gave him and walked over to Monica to give it to her.  I gave him another cookie and he did it again.  What a sweet kid!  Normally he would have horded those cookies and not shared them with anyone.  As it is, he didn’t offer any of those cookies to anyone else in the room except for Mama.  When that little bag of cookies was done, he had offered the majority of them to Monica and only kept a few for himself.  He might be a little bit confused about what is going on, but he definitely knows that Mama needs a little extra love right now.

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It’s been a long day, but all in all it’s been a good day.  We can now look forward to healing and getting back to our lives without the big, dark cancer cloud hanging overhead.  Thanks to everyone who’s been so supportive throughout this whole ordeal.  We love you sooo much.

It’s about 10 min to 9:00pm and I just figured out that there is an extra cat5 high speed internet port in our room, so I thought I’d get on my laptop and give a more complete update about the days events.  Twitter is nice, but it doesn’t reach as many people and there’s no room for detail.   – Quick sidenote about the Encouragement Page before I move on.  Of all the days for it to happen, the Anti-spam picture functionality failed yesterday on our web site.  This prevented many of you from posting yesterday and I apologize for that.  I was able to replace it with a simple math question as the anti-spam measure, but it seems like those nasty spam bots are sly enough to get past it once in a while and get a spam posting up there.  I’ll try to get rid of them as quickly as I can, but I had to decide to either take it down totally to prevent spam or keep it up and deal with the spam for now.  I opted for keeping it up there.  I know Monica loves to see new posts and it really makes a difference in keeping her spirits up.  Hopefully I’ll get a chance in the near future to fix the “weird letter” anti spam measure and put things back to normal.

Well, my eyes are feeling droopy and it’s only 9:00pm now.  Monica is half awake but enjoying the movie “Sweet Home Alabama” that a friend brought for her to watch.  Chick flicks and chocolate are two of Monica’s favorite home spun remedies. 🙂 

Anyways, for those that are interested in the days detailed events, here’s my attempt and recalling them.  Part 1:
The day started early.  We got to the hospital at 5:30am and saw the nurse right away.  They took us to a double room that we shared with an older lady who was sleeping.  We heard that this new building at the hospital had a lot of single new rooms so we were a bit disappointed that she would be sharing one, but at least it was a nice room and it had a little bench/bed (not to be mistaken with a sofa bed… definitely more like a bench…) By 6:30am my grandma and aunt joined us to keep us some company and it served to be a good distraction for both Monica and I as we anxiously waited for pre-op.  We didn’t expect for the doctor to see Monica until 7:30am, but they called her in early at 7:00am.  “Great,” I thought.  We were ahead of schedule and I couldn’t wait to see Monica out of the OR with the surgery behind her.  It turns out that thought was premature….

As the nurse aids wheeled her away my grandma, aunt, and I decided to go across the street to Marie Calendar’s for breakfast.  On our way out I saw one of the doctors I know from my medical billing company job rushing toward the hospital building in a fast paced, focused stride.  I said hello to him and he gave me a big hug and said he was on his way to see Monica to pray for her before she went in to surgery.  He’s never even met Monica!  The day’s blessings had begun.  We let him go so he could get to her before she was sedated, and we headed for breakfast.

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