Update: June 30th

Beth woke up this morning in so much pain. When Beth asks for pain meds, you know she is struggling. Bone cancer is one of the most painful types of cancer. Technically speaking Beth does not have bone cancer.  She has breast cancer which has spread to her bones.  Nevertheless, it is still one of the most painful types of cancer.  She said every bone in her body hurt this morning. She likened it to what she imagined it would be like if someone beat her up with a baseball bat.

Beth has been in moderate to severe pain for most of the last 3 years.  It started with intense nerve pain in her arm, hand and fingers.  She described it as the 'worst pain she has ever felt' and it wasn't even close. There would be times she would be at a "10" (on a pain scale of 1-10) and would be that way for days. There was a stretch of time 3 years ago where she didn't sleep for 3 days because the pain was so bad.  

Beth is amazing.  Through all her long nights rocking back in forth trying to make the pain lessen, all the times she got discouraging news, she has never given up Hope.  

One of my favorite conference talks is by Dieter F. Uchtdorf, The Infinite Power of Hope. 

If you want to read or listen to the entire talk you can here:
https://www.lds.org/church/leader/dieter-f-uchtdorf?lang=

We love you all. 

#BattleTogether 

Update: June 29th

Nothing really important to share today.  Beth's ribs are a lot better.  At this point we are thinking it's not a broken rib but more of a bruised rib or a pulled muscle.  She sneezed today and didn't scream in pain, so that's good.

We are really just waiting.  Waiting until we go back to Chicago next week for them to check Beth's tumor markers.  We need her tumor markers to be less than what they were last month.  Lowered tumor markers means that this new chemo is doing it's job.  Elevated tumor markers means bad news.

A couple of positive things about this new Chemo.  

1. It's oral.  No more sitting in a depressing wing of the hospital every 3 weeks with dozen of other people receiving treatment. It's really a sad and bleak place.

2. Her hair will start growing back.  Actually, she already has some peach fuzz starting to come in.

3. Mosquitoes don’t bite her.  Pretty sure this is because of the Chemo. They get a whiff of her poisoned blood and move along.

Lastly, as if our lives didn’t need more chaos, we now get to be tortured by having to be in the car while this guy learns to drive.  

Let's lighten it up a bit. Update: June 28th

Beth felt a little better today. Her ribs don’t hurt as much as they did yesterday.  Relatively speaking today was a good day.  Not much more to report.

Since we have some time... let’s lighten this blog up a bit.  

• Beth on heavy narcotics is must see SnapChat.  Last night in the middle of the night she yells out, “Hey, Alan.  Have you ever considered being a trucker?”.  I wish I had video of all of the crazy things she comes up with while high on Dilaudid.

• Beth doesn’t eat very much at all (side effect of the cancer).  When she does consume any food or drinks she wants to make sure whatever it is it’s good for her body.  She has been on a pressed juice kick the last few days.  There is a new uppity juice place in downtown Hudson called Restore.  A 16 oz juice from Restore costs $10 (before the tip!!!).  Ouch!  #RestoreMyBankAccount
  

• One of the many things that sucks about Beth having cancer is that I can NEVER come home from playing pickup hoops or a softball game and complain how sore I am.  When I try to, she just stares at me with a “WHY ARE YOU TALKING?” look.
  

• Speaking of death stares, this is the look Beth just gave me after I asked her for the 4th time, “Beth tell me something funny that has happened the last few days. I am trying to update the Blog!”.  So on that note, I will call it a night.
  
  
  

We love you all.

#BattleTogether

Fractured Ribs? Update - June 27th

Today has not been a very good day.  Beth may have fractured a rib this morning. The cancer in her lungs causes her to cough quite a bit and this morning she was coughing so hard we think she fractured something.  She has been in a lot of pain today and it especially hurts for her to breath in and of course it hurts anytime she coughs.  Her doctor want her to go into the ER and get an X-Ray just to confirm.  Beth was not having it.  In her words, "You mean go to the same ER where we spent 7 hours for them to do a CT scan of my chest 2 weeks ago? The same ER that told us the CT scan looked clear, when in fact I had cancer in my lungs? That same ER?  NO THANK YOU!"

In addition, she started vomiting again today.  We hope it is from the pain meds she took this last night, but whatever the cause, it is not good.

I can't describe how helpless I feel when she is laying there in pain, trying to focus on her breathing so it doesn't cause her more pain, all while not trying to vomit.  There is nothing I can do for her.  She just lays there trying to get through the next minute of her life.

Note to our local friends - Beth is not well enough to have visitors at least for the next day or so. Please call or text me if you are wanting to come visit and I can let you know when she is feeling up for it.  My cell is 330-316-3478.

Lastly - check out Beth's "portable" oxygen tank.  You can barely tell you are carrying it.

We love you all!

#BattleTogether

Update: Sunday, June 26th

Not much to update today.  Only real thing to report is that Beth has had abdomen pains all day.  The pain is most likely caused by the disease in her liver which the doctors explained is enlarged. When you touch the right side of her adodmen you can tell it is much harder than the left side.

Beth's doctor explained to me that the cancer in her liver is very wide spread. A scan of a normal/healthy liver would show up as all white. If there was a tumor it would show up as a gray or black spot(s) on the white liver. In Beth's case the scan shows her liver as dark gray and just a few spots of white (healthy parts of the liver).  The Chemo she started on last week can be effective in treating the cancer in her liver.  #PrayersUp

Also, Beth has been very hot the last few days.  We have the AC cranked up so high that my poor little Filipino mom who is visiting us has been wearing a heavy winter coat all day, yet still Beth has been complaining how hot she is.  Not sure what that is all about.  

 

Update: Saturday, June 25th

It took over 9 hours to get home last night when normally it takes a little over 6 hours. We have Friday night Chicago traffic (2 hours to go 35 miles) and I-80 being closed to thank for that.

As I mentioned before, the Cancer in her lungs will require her to use oxygen via a portable machine or oxygen tank. The hospital sent us home with 2 tanks that would get us 9 hours of oxygen for our trip home.  She used up one tank and when we went to hook up the 2nd tank there was an issue and we were unable to use it.  Beth can breath without the oxygen tank but it is hard for her to get a good deep breath - it feels like she can't catch her breath.  So not having a 2nd tank was a good enough excuse to speed the rest of the way home.  Even with me speeding it still took over 9 hours.  When we got home, Beth was able to hook into an oxygen machine that they delivered.  I’ll write more about this equipment in a later post but let me just say it is extremely obnoxious. It is large and loud.  All night, even though it was in the other room, I kept waking up thinking someone was cutting the grass outside and I kept thinking, “Who is doing yard work in the middle of the night”.  So loud.

While Beth is still very nauseous, she has not physically vomited since Wednesday.  She has been able to keep her oral chemo pills down.  We will find out in a few weeks if it's working.

Beth's doctor, Dr Tlemcani (Dr. T) called me on Thursday and left me a voicemail asking to speak to me privately.  When I listened to the voicemail, I thought to myself, "that doesn't sound very good".   When I talked to her she mentioned how it is very hard for her to talk to Beth right now.  I was confused; is it because Beth is being difficult?  Is it because she was drugged up and not making sense?  I was ready to help her through either scenario as I have had many years of dealing with both of these circumstances.  What she said though was very surprising.   She said it was hard for her to talk to Beth because she (Dr T) is very emotional right now because of Beth’s current state.  She has grown very close to Beth and has been trying with everything she has to treat Beth and bide her time.  She knows new cancer treatments are being discovered everyday and all she needed to do was keep trying to outsmart the cancer and buy Beth time.  She was shocked at how quickly things got out of control over the last 3-4 weeks.  She felt like she has failed in someway.  By no means is she giving up.  She has new demeanor to her.  She has a sense of urgency and determination that I haven't seen before.  She even used a phrase our family has adopted over the last couple of months, "Battle Together".   We are so blessed that she is our doctor.  She is human.  She is not used to losing, especially when her patient is young (and good looking, funny, talented, kind, I could keep going....).

Beth slept most of the day today.  She has not been eating very much at all.  Her entire food intake consisted of 10 oz of a protein shake and a few berries.  She is very tired.

Shout out to Heidi Snyder for having a package waiting for Beth when we got home.  Beth LOVES getting mail (and she goes insane for packages).  She loved getting some stylish new water bottles from S’well.  Heidi is our go to person for all things current and cool and she was “back at it again (damn Daniel voice) with these cool water bottles.   Thank you Heidi.

Hello??? Did you get my text? June 24th

I am committed to updating this Blog daily from here on out.  But before I get into the update, Beth wanted me to send a note about something she is really struggling with.  As much as she loves receiving all the texts and phone calls she is having a hard time responding to everyone in a timely manner.  She doesn't have a lot of energy and she sleeps most of the day.  She reads your texts and starts to reply and then falls asleep. So please don't be offended if you don't get a reply back. She is trying as best as she is able to. I promise to update this blog often as we get new info or anything changes.  We love you all and love hearing from you but it is impossible to keep everyone updated individually thus the reason for this blog.

Beth is still in Chicago. We are hoping to get discharged today.  The main reason she's been here so long is they needed to get her nausea under control. She takes an oral chemotherapy treatment and if she's throwing up she cannot keep the chemotherapy down and it is ineffective.  They believe they have her nausea under control now and she can resume taking her chemotherapy.  

In addition we found out that she has cancer in her lungs and it is causing her shortness of breath and to have a bad cough. Her pulse ox numbers have been very low and so they are going to keep her on oxygen for the time being.  She will carry around a portable oxygen tank that will help her receive the proper amount oxygen.  

Her leg has healed very nicely and she's able to put almost 100% weight on her leg. She's now able to walk without the use of a walker or a wheelchair, however her energy levels are so low that anytime she's out of bed she needs to be in a wheelchair.  

She's excited to get home today. 

Lastly I'm sure many of you have questions that maybe I'm not addressing. I would ask that you ask the questions in the comments section below for everyone to see and I will do my best to reply to them. I'm sure other people have the same questions.  

Conspiracy Theory

Beth met with a Gastroenterologist this morning.  He is trying to determine if her vomitting is because of the liver metastasis or from something else (meds or chemo).  They want her to stay another day so they can do an endoscopy (tube down her throat into her stomach) tomorrow morning.  We are hoping to be home Thursday.  Beth is missing her dog.

Conspiracy Theory: The GI doctor noticed that Ben and I were wearing Cavs shirts and that we were from Cleveland.  He started to make small talk about the Cavs and It was very obvious that he was not a Lebron or a Cavs fan.  I am convinced that he made Beth stay another night just so Ben and I would miss the parade tomorrow.  Well, jokes on him!  Ben and I are driving the 400 miles back to Cleveland tonight so we can attend the Championship parade.  We then are turning right around and driving back to Chicago to hopefully pick up Beth and head BACK home.  Actually, after seeing that travel itinerary in writing maybe the joke's on US.  Oh well… Ben and I are #ALLin and we wouldn’t miss this parade!

Update - June 20th

Beth's surgery went well.  We haven't met with the doctors yet; we will do that tomorrow morning. So that means we'll be spending another night here.  They want to monitor her and make sure they have her nausea under control (which I think they do). 

Quick plug for CTCA once again. Last night we took Beth to the ER. As expected our ER experience at CTCA was top notch.  Reminds me - I need to write a blog post about Cancer Treatment Centers of America. Aside from the World Class service (compassion, professionalism, attention to detail, etc) I am 100% convinced Beth would be in a much different place (health wise) if we weren't here (and that is a scary thought).  

So needless to say if you know anyone who is unhappy with their current doctor or overall level of care tell them to check out CTCA on the GOOGLE. 

Also, if I can get 4 more patients to join CTCA I get elevated to Diamond Status and I get a free cruise! ---- I'M TOTALLY KIDDING!!! 

Love you all.  

#BattleTogether 

Quick Beth Update - June 20th

Beth was admitted into the ER last night.  She could not stop vomiting and she had not been able to eat or drink anything for 2 days.  The cancer in her liver is causing her to feel sick and she making her vomit.  She has not been able to take any pain meds (or her Chemo pills) because anytime she drinks anything she throws up.

They got her pain and nausea somewhat under control now that she is in the ER.  

Another problem is Beth has had a very bad cough. Later today they are going to perform a bronchoscopy.  Bronchoscopy is a procedure that allows doctors to look at the airway through a thin viewing instrument called a bronchoscope.  The are looking for the tumors in her Bronchial tubes and they will attempt to freeze them off. That will hopefully alleviate her cough.

We are hoping to be able to come home tonight.  

Not So Good News...

I will keep this relatively brief.  I will go into a little more detail once emotions have died down and we can wrap our heads around this.  

On Thursday, the entire family drove out to Chicago for Beth's scheduled PET scan and a regular chemo treatment.

Beth has had a very hard 3-4 weeks.  She has not been doing well at all.  At first, we chalked it up to her surgery and it being a harder than expected recovery.  She has been getting progressively more and more fatigued, experiencing shortness of breath, having weird pains, a nagging cough, very nauseous and overall very very weak and frail.   

On Friday morning we met with her oncologist and she gave us some pretty difficult news.  She said her PET scan showed that the cancer has spread to other parts of her body and it has spread rather aggressively.  The cancer is now in her liver, her bronchial tubes and in several new spots in her bones.

The fatigue, nausea and vomitting is because of the cancer in the liver.  The coughing and overall crappy feeling is from the cancer in her bronchial tubes and her overall pain is from the cancer in her bones.  

Her doctor is switching up her IV Chemo to an oral Chemo that she will take everyday for 2 weeks and then 1 week off.  They are hoping this Chemo will attack the cancer in her liver.  The doctors said the cancer in her liver is not just in one or two spots but rather widespread throughout.

She has a follow up visit in 3 weeks and they will be able to tell how well this new Chemo is working.  I asked the stupid question of, "What happens in 3 weeks if the Chemo is not working".  The doctor gave us a nervous smile and simply said, "We just really need this Chemo to work".

These next three weeks are very important.  We appreciate your continued prayers on our behalf.  Our ward congregation is having a special Fast for her this week.  Although this has been hard news we are thankful for your love and support from all of you.  

More info to come.

#BattleTogether