Aaaaaaaaaannnndddddd, we're back!

Hello everyone. 

It has been a hell of a ride for the past few weeks, so much so, that we just did not have the time or mental capacity to keep the blog updated with everything that has happened.  This is a long one, so sit back, and enjoy the ride.

 

Trying to think back to October 19 to our last blog post, there was a major revelation to one of the causes of Lauren vomiting multiple times in a day, sometimes up to 6 times, but at least 2 daily.  As last mentioned, Dr. Vandermolen requested an endoscopy to be performed.  What was revealed was that Lauren’s stomach and esophagus was covered in ulcers from the chemo medicine, but also possibly stress induced.  Immediately, Lauren’s diet changed to mashed potatoes, yogurt, and miso soup.  Even so, we knew it was only a matter of time before it would come back up.  Everything that went down, just would not stay down and it was causing a huge concern with all the nurses and the doctors, and even family.  We all could see the agony and the pain Lauren was going through not keeping any substance down, and the daily loss in weight.  There was nothing none of us could do to make things better or more comfortable for her.  Although the diagnosis of ulcers gave Lauren some sense of relief, there was still something triggering her gag reflex.  

 

A week after the endoscopy, the situation with Lauren’s vomiting continued to worsen to the point where I felt the need for her to visit the emergency room at Los Alamitos Medical Center.  We sat in the waiting room for about three hours before a room became available.  The ER nurse requested multiple tests including, a chest MRI with and without contrast, an EKG, an ultrasound of the stomach, and probably the largest blood panel I have ever seen requested. What frustrated me, and Lauren, was that everything came back normal apart from her being slightly dehydrated.  What the hell is going on with her then?  After the dust settled, we left the hospital after being there for almost 8 hours.

 

We thought we were in good hands with the first gastroenterologist, she was very receptive, very caring, then nothing.  It was like she fell off the face of the planet.  No follow up calls, appointments, etc.  We were in dire need of a new GI doctor, but no one would have been able to see us for at least a month or two.  We needed help as Lauren’s surgery date was closing in fast.  During one of the visits with Dr. Vandermolen, Lauren could sense his frustration with the inactivity and the lack of urgency from the GI doctor.  Dr. Vandermolen stepped up to the plate and reached out to his colleagues to get Lauren an appointment with a different GI doctor.  The following day, Lauren had a phone consultation with Dr. Quist who carefully explained the next steps moving forward.  Dr. Quist put in an order for Lauren to have a feeding tube installed at Hoag Hospital in Newport.  This was on our anniversary, Thursday, November 3.  We tend to celebrate our anniversary in the strangest ways sometimes. LOL

 

The procedure to to have her feeding tube surgically installed took no longer than 15 minutes, however the time for her to come out of anesthesia was about 45 minutes give or take.  While I was waiting with Lauren in her room, Dr. Quist mentioned to me that Lauren’s stomach and esophagus was covered in ulcers, and it was much worse than he had expected.  Dr. Quist also performed a biopsy of an ulcer, not to check for cancer, but to see if there were any other issues that someone may have missed.  The anesthesiologist and Dr. Quist felt that it was necessary for Lauren to stay overnight at the hospital so she can be monitored with the hopes of being discharged the following day, Friday, November 4.  Keeping in mind, that November 7 is Lauren’s scheduled surgery day, and things quickly began to feel as if the surgery was going to be pushed out.

 

Friday, November 4 comes around, and the internal medicine doctor at Hoag, along with Dr. Quist ultimately decided that Lauren should just stay at the hospital to ensure she has enough strength and the meds to get her through surgery.  The next few days at the hospital was tiring, and stressful.  In the evening of Sunday, November 6, the doctors, the surgeons, the nurses all made the call to proceed with surgery.  Talk about waiting to to the last minute. Lauren’s surgery was scheduled for 7:30 AM, so that morning I wake up early and haul ass (within the legal speed limit of course) to Hoag to be at Lauren’s bedside by 5:00 AM.  We are waiting for the next steps when at 6:30, Dr. Vandermolen comes into Lauren’s room to check in on her.  He has been an absolute saint and seeing him that morning gave us both a sense of calm and comfort knowing that things are going to be just fine.  Eventually, the nurses come get Lauren at around 7:00 AM to take her to get prepped for surgery, and off she goes.

 

I am in the waiting room with Lauren’s mom, and bear with me, I’m trying to remember the timing, but I believe it was around 9:00 AM when Dr. Guerra, the breast surgeon, gave us an update on Lauren.  Dr. Guerra said her portion of the surgery went extremely well, no issues, and that two lymph nodes were removed to be tested for cancer cells.  By now, the reconstructive surgeon, Dr. Ng is doing her part to install expanders for the reconstructive portion of the surgery.  Give or take, it was about two hours later when Dr. Ng came into the waiting area to let me know that Lauren is in recovery and that everything went as planned with absolutely no issues.

 

I proceed back to Lauren’s room on the 8^th floor at Hoag when they finally wheel her back in at about 1 PM.  Lauren looks great, but I just can’t tell if she’s in any pain, hell, she doesn’t even know herself.  At this point I mentioned to her that while she was in surgery, I went out and bought my dream car, a Porsche 911 GT3 RS.  All I got was an “okay!”.  I couldn’t remember who asked Lauren if she was in pain, maybe it was a nurse, or maybe it was her mom, but Lauren said she was not.  I quickly responded that even though she might not be in pain, our checking account is.  I guess I was the only one that thought my joke was funny.  I really didn’t get my Porsche, but I am happy that my wife is back in the room.

 

Throughout the day, nurses and doctors visit Lauren to make sure she’s doing well and that she’s keeping up with her feeding through the tube, and to administer any medication to help with the pain.  While in the room, Lauren mentions to the nurse that she is in some pain and the nurses give a small dose of morphine.  Twice she was given morphine the day of surgery, but after that, the doctors, and nurses said Tylenol would be the first line of defense, and if that did not work, then it’s the oxycodone.  

 

By now it’s Tuesday the 8^th and Lauren gets a visit from Dr. Vandermolen super early in the morning, we are talking about 5:30 AM to check in on Lauren.  What an incredible guy and doctor for really caring for his patients.  Soon after, Dr. Ng, the plastic surgeon also checks in on Lauren to make sure she’s doing well and to ultimately give Hoag the green light for Lauren to be discharged.  At noon, Lauren finally gets to go home.

 

This is a whole new thing for us.  We now must navigate feeding Lauren through her feeding tube five times a day with a nutrient filled “shake” that is the size of a small protein shake using a large syringe.  We also must drain the fluid that accumulates from her mastectomy twice a day, sponge bath Lauren, clean the house, continue doing Laundry, feed our cat, play musical chairs with the cars to keep them running, drink wine, drink more wine, have more sips of said wine, and then find something that resembles breakfast, lunch, or dinner.  Most importantly, I am doing whatever I can to keep Lauren comfortable.  Initially we thought the idea of a care giver would be awesome, but they just seemed to get in the way, and they weren’t even allowed to feed Lauren.  After one day, we cancelled the service and things have been just fine.  Lauren is to the point now where she can feed herself without any issues.

 

There was one concern we ran into two days after surgery.  Lauren noticed that her left nipple became very dark in color compared to the right nipple.  I call Dr. Ng’s office at around 5:30 PM, thinking I was going to get the on-call doctor but was surprised when it was Dr. Ng who answered the phone.  We describe what is going on, she seems concerned, and she wants us to send her pictures.  Minutes after sending her pictures of both nipples, Dr. Ng calls us back and states that she is going to call Hoag’s hyperbaric treatment center for oxygen treatment.  The following morning, Hoag calls Lauren and states that she has an appoint later in the afternoon.  We have no idea what the process is like, but I have heard that it does some amazing things for recovery.  Hoag prescribed 4 weeks of treatment, 5 days a week and each session is two hours long.  It’s remarkable that even on the first day of treatment, we started seeing positive results.

 

Sit back, relax, and enjoy the oxygen.

We are adjusting to our new routines, but I can truly say that even though we have many things we must do throughout the day for Lauren post-surgery, what really helped get the load off our shoulder was when Dr. Guerra texted Lauren indicating that there were no residual cancer cells within the removed breast tissue.  As I had mentioned in our last Instagram post, Lauren is officially cancer free.  

November 14, Lauren has a follow up visit with Dr. Vandermolen to go over any post-surgery notes from the GI doctor who installed Lauren’s feeding tube as well as any biopsy post-surgical notes from the surgeons.  Being that the chemotherapy was extremely successful, as was the surgery and the positive biopsy results from the surgeon, Dr. Vandermolen indicated that Lauren will be in the cohort of cancer survivors whose likelihood of cancer coming back is extremely extremely low.

 

We are of course super pleased with the results of everything thus far.  Every test and each surgery have resulted in positive outcomes/answers, exactly what we needed to help ease our minds and move forward.  As of today, Lauren is doing good, she’s not in any pain, hasn’t thrown up in 10 days, remains positive and happy with the outcomes of everything.  She’s been taking it easy, trying to navigate introducing food back into her diet and getting used to her new, but temporary, body.  Thank you to everyone for the outpouring of support, we are looking forward to a new year so we can put this behind us.  

 

Love,

Chris

 

Look at all that hair.  Can you tell she likes cats? 

P.S. One thing we forgot to mention, we had a very successful Breast Cancer walk on October 23.  Close to 50 people showed up to support Team Lolo and we are so grateful to everyone who came out and missed those that couldn’t make it.  Thank you for supporting, Lauren didn’t stop smiling the whole walk!

October 19 Update - MRI All clear & other things.

October 19

It’s been a tumultuous few weeks, so much so that we didn’t get a chance to update the blog.

 

For those who may have missed the instagram post, Dr. Vandermolen wanted 3 tests conducted after my chemotherapy had completed to make sure there was no signs of cancer.  As discussed in one of the previous blog posts, my mammogram and ultrasound came back negative for cancer.  But the most important test was the MRI, which also came back clear!  Dr. Vandermolen was extremely happy with the results of the MRI and some of the nurses came over to congratulate me and were pleasantly surprised at how clear the results were, saying a lot of times they don’t see that in post treatment MRI’s.  

Even though Lauren has been off chemo since 9/26, the vomiting has been persistent and it occurs anywhere from 2-5 times a day.  It’s not always food that comes up or the fact that she’s not necessarily nauseous, its just a lot of mucus and bile, it’s happening so much that its taking away all of my energy.  Quite frankly, Lauren is nervous of eating too.  Dr. Vandermolen is concerned something else is going on, so he has ordered 2 additional tests on top of the H. Pylori test ordered by the GI Doctor.  Dr. Vandermolen wants an endoscopy of her upper abdomen down to the stomach to see if there are any lesions or ulcers or polyps.  The other test is an MRI of her brain to see if there are any neurological nuances causing the gag reflex in her stomach to trigger all the time.  The H. Pylori test was this past Monday at the GI Doctor’s office and the test was simple.  Lauren blew into 2 bags, 1 prior to drinking this super tart lemonade drink and the 2nd time 15 minutes past drinking the juice.  From there they’ll test both bags to see if H. Pylori bacteria is present and put her on an antibiotic.  As you would have guessed the very tart lemonade came up minutes after leaving the doctors office, of course.  The MRI of the brain is scheduled for Thursday, September 20th and the endoscopy is scheduled for Monday, September 24th, we’ll be sure to keep everyone posted.  The vomiting has been extremely hard, on both of us.  It’s exhausting, makes me anxious and there are lots of tears out of frustration and wanting it to stop.  Tastebuds have been tricky to manage during this and then the fear of ruining foods because of it are becoming harder to manage.  

Surgery is scheduled for November 7.  Of course if the vomiting hasn’t stopped, surgery will get postponed so we are anxious for next steps with the GI doctor to happen so we can get Lauren better and stronger for surgery.  It should be a fairly easy recovery from surgery from what the doctors say, just taking it easy and trying not to exert herself or move her arms much.  During this surgery, the double mastectomy will occur and the reconstructive surgeon will begin to do her part to get Lauren started on some new boobies!

Chris is heading back to work tomorrow and he is quite anxious.  Chris worries about not being around to easily help me out as much.  During the 9 weeks he’s been off, he has become accustomed to carrying for someone 24/7, taking care of the house and chores - it’s going to be an adjustment for us both.  

Lauren’s hair has been growing back quite nicely.  Some areas faster than others, but it is really soft and fluffy.  Eyelashes and eyebrows are coming back slowly, along with nose hairs - which is causing Lauren to itch and sneeze quite a bit.  Lauren was finally able to use a real razor again to shave her legs - her platelets have rebounded nicely which is why an electric razor was needed previously - but a real razor was quite a nice surprise.  

Lauren has had a lot of hydration treatments, about 3 times a week, which requires a visit to Keck.  As we look back the scheduled treatments were easy to manage but now going to Keck 3 times a week, sometimes 4, plus doctors visits, scans, ER visits, it’s become quite exhausting and time consuming to go around to all of these places.  We anxiously await the days where things are easier and less chaotic.  

Apologies for jumping around between 1st and 3rd person, Chris and I are both trying to write this together and we are both scatter brains at the moment.

Thanks to all for the love and support you continue to show us.  For those that are coming on Sunday, we look forward to seeing you there.  Lauren will be in a wheelchair as she has no strength for that long of a walk (apologies in advance if there is vomiting!), but we will miss those that can not make it.  

Love,

Chris & Lauren

Breast Cancer Walk info/update

Hi All,

 

We are 2 weeks away from the Making Strides Against Breast Cancer Walk!  No pressure to participate, let alone donate, but I wanted to share some helpful information my sister found if you are interested in joining the walk.  Chris and I are hoping to be at the walk (won't be walking), but it depends on how I am doing and where my strength is as we get closer.  I do have shirts if you are joining the walk, my sister will have them, so please make sure you get one from her!

 

Making Strides Against Breast Cancer Walk

Date: October 23rd 

Time: 8 am registration, 9 am walk time 

Location: Costa Mesa, CA

 

You can sign up using this link.  Follow these steps for signing up: 

 

1. Click "Join This Team" - my team is called "LOLO"

2. Fill out the email form with - it will prompt you to start an account

3. Once you've opened your account, it will ask "what drives you", feel free to click any/all that apply...

4. From there scroll down and you'll see "Whats your fundraising goal?" - this can be set as low as $1 or as high as you'd like.  This is NOT a separate fundraising goal, the funds that are raised as an individual are automatically applied to team "LOLO"

5. Continue to scroll down and fill in your contact information

6. Lastly - click Sign Up

 

Using the provided link above it will automatically prompt you to sign up under team LOLO.  Please feel free to reach out if you have any questions, and if you want to bring anyone with you, please do so!

 

Finally. Something positive. Something spectacular.

10/6/2022 Update

Last week we met with the plastic surgeon who would be performing my reconstructive surgery.  Dr. Ng was great, she was super informative and very thoughtful in how she explained things to us.  I have 2 surgeons, 1 to perform my bi-lateral mastectomy (Dr. Guerra) and the other to do the reconstructive surgery (Dr. Ng).  They work together during my mastectomy to prepare me for the reconstructive surgery that I will have 4 months later.  Once the breast tissue is removed in my first surgery, Dr. Ng comes in and places temporary ‘deflated bags’ into my chest to allow scar tissue to grow where future implants will be.  During the course of the 4 months post my mastectomy, Dr. Ng will ‘inflate’ the bags every few weeks to allow my skin to heal around what will be my new boobies.  Once everything is in place, she will go back in and place the implants in, removing the bags that were there for temporary support.  

 

NOW FOR THIS WEEK….FINALLY SOME AMAZING NEWS!

 

Monday we went to Dr. Vandermolen and I was very very anxious.  I was starting to feel depressed with how things were moving so slowly, I’ve never felt like that before – weighed down like you couldn’t get up, it was becoming extremely hard to see the end of the journey.  After writing down questions for Monday’s appointment, Dr. Vandermolen comes in, he asks how things are going; I thought I was going to be strong enough to ask him my questions, but all I could do was hand him the paper and let him read it himself while I cried.  After reading my first question of if there was any chance at this point to be done with treatment considering how my body has been responding and also considering how I’ve been feeling, he says ‘I think that is definitely an option.’  He says about 25% of patients do not complete treatment for various reasons and considering how I’ve been doing and how close we are to being done and the treatments have done what they needed that we could be DONE with chemotherapy!!!!  I broke down crying, smiling, and just could feel my body relax for the first time in months.  

 

So now that treatment is over, I can start to work on recovery, slowly.  I know it’s going to take time.  It’s been 11 days post a treatment and I still feel exhausted and am still vomiting 4-5 times a day.  Its going to take time, but I’m ok with this time because this is the time to get back to being me instead of never feeling myself and never knowing when treatments would be over.  I still have to go in for hydration and blood work and doctors visits and tests which is almost daily at this point, but it’s all for good reasons like checking my progress, keeping my body hydrated from all the vomiting, and to get me feeling better. 

 

Now yesterday, was also great news.  I had a mammogram and ultrasound scheduled per Dr. Vandermolen.  I went in, slightly nervous, but not so much because I knew in the back of my head after 5 months of chemotherapy it had worked and taken care of the tumor based on all of the feedback the doctors had given me.  I went back, did both tests and the doctor gave me the results immediately – he says, we do not detect any cancer!!  I cried again, just hearing the confirmation based on the actual imaging vs touch and assumptions was so relieving.  I walked out of the testing, my mom had taken me, I told her the good news and we both started to cry, called Chris and you could hear in his voice how happy he was, it was so heartwarming to know that after all of these months of going through this we had finally come to a great place, that the chemo did its job and that we could start to move forward.  

 

I met with the GI doctor today, she is wanting to do a H. Pylori test on me in the coming weeks to make sure I have no infection in my gut.  But, we have to wait a week or two because of a medication I have now stopped that could create a false positive.  I’ve also scheduled myself to meet with a hypnotherapist to see if he can help with the vomiting.  Trying anything I can to get this to vomiting to stop, it’s been a little over 6 weeks and it’s taking a toll on my weight, my health and my appetite.  

 

So all in all, a really really great week with lots of progress made.  I had hydration today, with an added dose of potassium (my potassium numbers had dipped for the first time – all due to the vomiting) and have it again tomorrow.  Today I felt pretty decent and know that each day, little by little, I’ll start to feel like myself again.  

9-28-2022 Update - Oye

This blog post will be a twofer being that there wasn’t an update last week. For the past three weeks, it has been a hell of a nasty rollercoaster for Lauren, both emotionally and physically. 

 

Going into Keck medicine last week to meet with Dr. Vandermolen, it’s the typical doctors visit we have had with him. Dr. Vandermolen proceeds to check Lauren’s vitals, checks her lungs, her legs & arms, and her current and past blood work reports to see if there are any trends he is concerned about.  Sure enough, Dr. Vandermolen was not pleased with Lauren’s blood results to proceed with her chemo treatment.  This will be the third week that Lauren has not had treatment.  Keep in mind, days or weeks that Lauren may not have treatment does not mean she has a free week of being able to do whatever she wants to do, or eat whatever she wants to eat.  Instead of having a chemo treatment on Tuesday, Dr. Vandermolen called for yet another blood transfusion to help bump up Lauren’s red blood cells count and her hemoglobin numbers.  

 

Tuesday would have been like any other chemo infusion day except it was Lauren’s scheduled blood transfusion at Hoag where there are no guests allows outside of the waiting room.  Even then, Hoag discourages guests from sticking around as the waiting room is set up to hold no more than six people.  I dropped Lauren off at around 8:45 in the morning, then went back home to do some chores such as cleaning up the house and doing laundry. The ominous laundry pile that never seems to get smaller in size.  By 3:00 PM, I head to Hoag to pick up Lauren from their infusion center and take her back home. 

 

The fatigue, nausea, and vomiting has been with Lauren for the past 3 weeks with no end in sight.  We had hoped that the pause in treatment would have addressed the sickness Lauren has been feeling, but it has not, not even in the slightest.  Two to three days a day for the past three weeks, Lauren has been vomiting.  Sometimes the vomit is food, sometimes it’s just bile and mucous, and sometimes it’s all the above.  Trying to keep food down for Lauren has been a challenge, trying to keep her energy levels up to be the slightest bit ambulatory has been a huge struggle.  The nurses at Keck suggest that Lauren find a Gastroenterologist (GI) to see if there is anything they can shed some light on with Lauren’s constant upset stomach.

 

Thursday we meet with the GI doctor remotely as it was the only way we were able to get an appointment at the last minute, or else we would have had to wait until late October or November. Without seeing Lauren in person, the GI doctor Indicated that Lauren may have some form of gastritis from the chemo medication, particularly Keytruda.  More medication was prescribed to help with stomach issues, it just didn’t seem to work all that well.

 

Come Saturday the 24^th, Lauren wakes up not feeling well and the vomit begins, but this time, stomach cramps ensue.  I can sense Lauren in pain and we both agree that we should take a trip to the ER to ensure she doesn’t have an intestinal blockage. We wait for Lauren to be admitted and randomly, a medical technician comes out from the restricted access door calling Lauren’s name.  Probably one of the strangest things I have seen medically in a while, there technician proceeds to draw Lauren’s blood in the waiting room.  We eventually get escorted to a room where they start giving Lauren fluids via IV, anti-nausea medication, and a small dose of morphine for the pain.  The ER doctor comes into our room and tells us they want to do an ultrasound to check to see if there is an intestinal blockage.  Great!  Not to long after, the ultrasound technician comes into our room and does a scan of Lauren’s abdomen. We patiently wait for the results.  

 

About an hour after the test, the ER doctor comes into our room to give us the results of the ultrasound.  Good news is that Lauren did not have a blockage, and the only thing they found was that Lauren’s spleen is slightly enlarged which is a side effect of the chemo medicine.

 

Sunday, September 25.

 

Not much going on other than making sure Lauren is kept comfortable despite the continued vomiting and feeling of fatigue.

 

Monday, September 26.

 

We did not meet with the doctor today, but we did proceed to the infusion floor at Keck Medicine.  Protocol at Keck is to draw blood before every infusion session to make sure her numbers are within range to proceed.  I know Lauren hates this entire process, I hate this, everyone who is near and dear to Lauren hates this, and we all see the pain inflicted onto her.   As Lauren and I are taken back to her treatment pod, the nurses always ask the typical questions like “how are you feeling?” Etc. Etc., but this time I think Lauren’s nurse knew that Lauren was not doing well with all the vomiting and fatigue.  The nurses know there is something that is triggering the vomiting, especially week three after the last treatment, but they just don’t know.  The nurses did request an EKG test at Hoag to monitor he heart since there is a correlation in women between heart issues and vomiting when chemotherapy is treating cancer.

 

Another suggestion from the nurses is the H. Pylori (Helicobacter Pylori) test.  The test looks at the bacteria in the digestive system to see if the H. Pylori bacteria is present since it can promote digestive disorders such as gastritis, ulcers, and other issues.  Reading up on the test, most people will never experience symptoms with the H. Pylori bacteria present in their digestive tract, however with Lauren’s weakened immune system, the slightest issue is magnified.

 

Tuesday, September 27

 

Back to Keck today for a hydration infusions and some anti-nausea meds through Lauren’s port.  Still pending the results of Lauren’s EKG test and the H. Pylori test.

 

Wednesday, September 28

 

I will try to get another blog posting up before the end of this week.  Lauren has another hydration infusion today, tomorrow and Friday we meet with the reconstructive surgeon and more.

 

Chris

9-17-2022 Update - Paused again

 9/17/2022 

This past week has been a bit of a whirlwind.  8 of the past 10 days were spent at the doctors office if you include last weeks visits.  These last few rounds of chemo seem to be coming very slowly and from what we are told this is very normal that things are just in a waiting pattern each week depending on how my body is responding.  

 

·      Monday: We went to Dr. Vandermolen for a check up on my blood and he wanted to get a pulse of how I was feeling after the 3 days of IV fluids I had received the days prior.  The blood results came back and Dr. Vandermolen was not happy with my hemoglobin again, along with my white blood count and my platelets, so he put a hold on my infusion for the week.  To help my white blood count, I was given a short acting white blood booster injection to help reduce any chance of infection/sickness.

·      Tuesday: Since my hemoglobin was low from Monday’s visit (7.4 and ideal is 8 in order to resume treatment) I had a 2^nd blood transfusion at Hoag.  Luckily this time it was about a 5 hour process vs the previous 8 hour process.  After the blood transfusion, I was feeling better, had more energy and my heart rate had started to normalize a bit more.  It was nice to have the same nurse I had the last time, Sherry, who was the one who is also triple negative and had just finished treatments in April.  She took great care of me and made sure that everything moved at a much faster pace than the previous appointment. 

·      Wednesday: The day started at 8am with a virtual call with a therapist.  I’ve been getting very anxious (for obvious reasons) and wanted to talk to someone that wasn’t connected to ‘cancer’ since I just want to learn how to manage my emotions and get through these last few rounds.  It was a productive call, we concluded that I’ll start meeting with her for the next 6 months every week, to help me manage all of these feelings I have about treatment and my diagnosis.  You don’t realize you need someone to help you through these things that is outside of your circle until they point out the things you don’t want to accept, like the fact that I don’t know how to personally deal with hardship, which is where I’m at in this journey – I don’t know how to mentally get through the fears and anxiety of what’s to come each week with treatment.  Next up was an appointment with Dr. Guerra, my breast surgeon, who we haven’t seen since April.  The appointment with Dr. Guerra was insightful but overwhelming.

o   She confirmed that I will have a double mastectomy, which we already assumed was going to happen based on my diagnosis, but she solidified that this is the best route to reduce the reoccurrence of cancer forming. 

o   The surgery, assuming my treatments resume in the next week, will take place sometime between November 1 – November 15.  

o   It’s a 4 hour surgery assuming everything goes smoothly and she is hoping since I have chosen to have reconstructive surgery that we can get a plastic surgeon to come in and do their portion at the same time, but that is still TBD.

o   Recovery has gotten a lot better over time and the hardest part will be not lifting my arms and not using my arms to get out of bed, off the couch, etc. 

o   Upon examination of me, she felt no tumor – which is GREAT news and what we knew was happening but nice to hear it again.

·      Thursday: Back to Dr. Vandermolen we went for another check of my blood.  My hemoglobin was much better, close to 10.5, and of course my white blood count had improved since the shot given on Monday, but my platelets still were low.  So treatment was and still is on hold until our next visit on Monday, where hopefully they will have boosted enough on their own to get my treatments back on schedule, but only time will tell.

 

We have a 3 day break from any doctors appointment, which is NICE to say the least.  My side effects this past week have just been some exhaustion where I’ve taken naps throughout the day and gone to bed early, followed by a bit of nausea and vomiting, but not nearly as much as the prior week.  I’ve started to decorate the house for Halloween to keep my find focused on something else and its fun to see cute décor in our home now that we’ve remodeled – I’m excited for the holidays more than ever this year, for various reasons.  All in all, those are the updates for the week – it’s been a lot and exhausting to go to the doctors so many days in a row, Chris and I both can’t wait until there is a possible normal week again of say maybe just 1 doctors visit….none is probably not going to be for a while, we assume.  

 

Hope everyone enjoys the weekend.  We are going to take it easy this weekend and spend time at my parents house tomorrow for dinner.

 

Monday I have my Keytruda (immunotherapy) infusion and another visit with Dr. Vandermolen to see how my platelets are, so we’ll be sure to keep everyone posted soon and, so please keep your fingers crossed my numbers are good for chemo to resume.

 

All my love,

Lauren

9-11-2022 Update

The crummy feeling Lauren has been going through for the past few weeks is still here, even with the previous week Dr. Vandermolen insisted Lauren skipping.  From this point on, the fatigue and the daily vomiting, we think, will be the norm for the next three sessions.  Dr. Vandermolen hinted that the vomiting and the increased fatigue Lauren is experiencing has finally caught up with her.  Damnit.

 

Basically, the meds are compounding after all this time and Lauren’s body is just over it.  It was described as ‘here, hold this one plate, oh but wait, now hold these other 15 plates’, and then see how you manage.  That’s basically what is happening, the meds are just stacking up inside Lauren’s body.  The fatigue comes in waves, Lauren naps throughout the day and her energy to be able to do her reduced workouts has even been harder.  On a good day she’ll be up for putting laundry away, emptying the dishwasher and making our bed.   It’s been lots of Netflix, reading and coloring these days with small walks around our block to get some fresh air.

 

After leaving Keck Medicine last week, Lauren and I were ecstatic to have a week off from treatment thinking we could hopefully have a week with a slight sense of normalcy, eating what we wanted, drinking what we wanted, and getting out and doing a few things a normal human being would be able to do.  Boy were we in for an unpleasant surprise.  All the nasty symptoms Lauren has been experiencing did not subside from her week off chemo.  Her bowels continued to not cooperate despite the lack of chemo medicine that can inhibit the movement of “things”, which is one of Lauren’s biggest gripes since starting treatment.  I can’t say I’ve experienced constipation but seeing Lauren struggle physically and emotionally with it is painful to observe.

 

Lauren’s last post mentioned that vomiting has been a new thing that she just can’t seem to shake.  It’s not that she’s feeling nauseas when she vomits, it’s just her stomach isn’t agreeing with something, we just don’t know.  We have adjusted Lauren’s diet umpteenth times trying to figure out what works, and what doesn’t.  At first, we assumed it was foods that were considered acidic, but even with the basics, chicken broth and white rice, there was no rhyme or reason for the vomiting.  For the entire week, it was a constant worry as to when things were going to come up.

 

The Friday evening before last, the fatigue and the inability to keep food down led me to call the on-call doctor at around 10 PM in the evening.  I spoke to the doctor explaining the symptoms Lauren was experiencing and what the hell can we do to make Lauren more comfortable.  The doctor gave me three choices, 1) He would call in a prescription for nausea, 2) Wait until Monday for a hydration infusion, 3) Head to the nearest ER as the doctor was concerned with a blockage in her bowels.  The following morning, Lauren’s mom took Lauren to the emergency room at Los Alamitos Medical Center.  The ER doctors felt rather confident that there wasn’t a blockage but went ahead and gave Lauren some meds and hydration via IV.

 

Now, to this past week.  Infusion has resumed.  We met with Dr. Vandermolen on Tuesday prior to the infusion treatment.  We explained to him all the issues Lauren had dealt with the week before, and unfortunately, it is all too common for people to have the same symptoms who are on the final few sessions of chemotherapy.  Dr. Vandermolen assured us that this is normal, the additional trips to Keck and/or Hoag for hydration, the additional doctors’ visits – it’s becoming almost a daily part of our schedule.

 

Lauren was able to complete treatment #13 on Tuesday, which leaves us with 3 treatments to go.  As much as it is a relief, it also can’t come fast enough.  Tuesday went like normal but because the tough weeks Lauren has had, Dr. Vandermolen wanted her back Thursday and Friday for hydration and anti-nausea meds via IV.  On top of that after hearing that Lauren was still vomiting, they signed her up for hydration on Sunday as well.  So, 4 trips to the doctors this past week.  The doctor gave Lauren a new medicine to try and help with the nausea, it’s something they give for patients who are bi-polar.  Well, Lauren won’t be taking that again.  She took it Friday night, woke up around 1am to go to the restroom and was pretty sure each leg weighed about 75lbs and was worried she might fall down our stairs.  When she woke up on Saturday morning, she was basically a zombie all day – needless to say, this drug works for people who may be bi-polar and helped with the nausea, but it’s not something Lauren will be taking again, she’d rather vomit than go through those side effects again.

 

On top of that this coming week is probably going to be somewhat the same, but who knows.  Tomorrow, we meet with Dr. Vandermolen for a checkup, Tuesday is infusion #14 and then on Wednesday we meet with Dr. Guerra (the Breast Surgeon) to get Lauren’s surgery set up.  It’s nice to have this appointment finally here as it’s one step closer to being done with chemotherapy.  Who knows if any other visits will be needed this week, but we stay on our toes depending on what Lauren’s blood work shows and what the nurses and doctor want to do about her nausea and vomiting. 

 

We’ll update again soon, but for now, just trying to work through all the side effects.  I am so grateful I took this time off from work because I just can’t imagine being at the office and Lauren calling me because she isn’t feeling well or has just thrown up and no one is there to rub her back or give her fluids after and get her to calm down.  Thanks for all the check-ins, we are getting close but it’s not over yet.

Love,

Chris

 

 

8-31-2022 Update - Holy hell!

Hello All,

 

This past week has been one of the worst since I began chemotherapy.  After our last update, everything turned to shit!  Wednesday day I was feeling pretty blah, just couldn’t get my nausea or stomach to feel any sort of comfort.  Wednesday evening I started to throw up making me weak on Thursday (with still the same blah feelings and stomach discomfort issues).  On top of this, I was having trouble sleeping, which wasn’t helping my overall mood.  I spoke to the nurse Thursday morning, she gave me some new meds to help with the acid in my stomach as well as an even stronger anti-nausea med that also helps with sleep.  Thursday night rolled around and again, I threw up.  On top of that my head was so fuzzy, I just didn’t feel right.  Chris called the after hours doctor at Keck and he gave us 3 options: go to the ER to get fluids, get another prescription for a heavier dose of anti-nausea med or wait until the morning and go into Keck for fluids.  We opted for the last option.  The good news with all of this was that the new meds to help with sleep, actually have worked and I’ve been able to get a good 7-8 hours of solid sleep vs my 3-5 hours of broken sleep with the Ambien.  

 

Friday morning I had 2 hours worth of fluids and anti-nausea meds.  While sitting at the appointment, I threw up again.  After the fluids I started to feel better, but was put on a ‘bland diet’ as chemo has really taken a toll on my stomach, esophagus and GI tract.  I constantly feel a pit in my stomach, have to eat small meals every 2 hours and never feel like my stomach is settled.  Saturday and Sunday resulted in the same routine – but at Hoag and both mornings at 7am.  So this past weekend we were on our way to Hoag at 6:30am for my 2 hour appointments to get fluids and anti-nausea meds.  After each round of fluids and anti-nausea meds, I felt better, but my diet has remained bland to try to not agitate my stomach even further – nothing flavorful, nothing spicy, basically toast, rice with broth, bland chicken, crackers, and Pedialyte has been the easiest.  

 

Monday rolled around and off I went for a follow up appointment with Dr. Vandermolen’s nurse.  She answered a lot of my questions and told me that basically what I am going through is very normal for the end of treatments.  My body is just consuming so much poison that it’s all catching up with me.  I need to get my eating slowly back on track by expanding my bland diet to include more fiber, as you can imagine without any fiber what happens to your poopin’ patterns (which also contributes to nausea), and to continue to take the new meds to help ease the acid in my stomach.  On top of this, my white blood cells had drastically declined so a short acting white cell booster shot was given to me on Monday to help fight off any infection.  It was a good appointment, but I was still feeling deflated and just anxious for the next treatment.  

 

Tuesday rolls around, I get everything ready for my 13thtreatment.  I have a really hard time sleeping the night before each treatment, I’m anxious and fear that they won’t be able to complete treatment due to my blood work plus just nervous for how I’ll feel post treatment as it’s getting harder and harder the further along I go.  So we head into see Dr. Vandermolen first, he asks how I am doing and I reply with ‘hanging in there.’  Typically I reply with good, but after these past few days I really feel like I am hanging in there.  He does his normal check of my lymph nodes, heart and legs and starts to ask me questions about how I’ve been feeling and what’s been going on.  I immediately start crying and telling him how this week has been hard with all the side effects, he listens and says, ‘I think we need to give you the week off to feel better.’  This is EXACTLY what I was hoping for.  Just a few days to try to get my stomach back on track, get my head back into a stronger space so I can finish out these last 4 treatments and just a small blip of feeling normal.  Dr. Vandermolen thought I was going to fight him on this and he was pleasantly surprised I did not – this is what I had wanted before I walked into the office, I had even written it in my journal a few nights before, that I would welcome a little break.  So he told me to focus on getting my food back on track as much as possible, get some rest, get some walks in, enjoy the outside and enjoy the long weekend.  So, with that I gladly walked out of that office without completing treatment #13.  I was so grateful he looked at me as a whole person vs just as a patient – he could see that it was beyond just how I felt physically, but mentally I am/was drained.  He reassured me that this week delay doesn’t impact how productive the treatments are overall.  

 

So overall, I am thankful I get a week off, but of course still anxious and in my head about these last 4 treatments.  I so badly want this to be over (as I know my husband and family do), but I fear that these next 4 weeks of treatment will be like this last week and that terrifies me.  I know the outcome of treatment will be positive and exactly what needs to happen, but getting there is still a long road ahead.  Chris taking time off from work could not have come at a better time.  Having him close by is such a relief because this past week has truly been tough and I’ve needed him more than ever before.  I’m physically exhausted, mentally drained and emotionally a wreck – lets hope these next 4 weeks go by as smooth as possible.

Love,

Lauren

8-24-2022 Update - Four more to go!

August 24, 2022

Lauren is down to four more treatments and then she can kiss chemotherapy goodbye. 

 

It has been a few weeks since we have seen Dr. Vandermolen face to face, but we have seen his nursing staff to address any side effects from the chemo medicine. This past Tuesday, we went directly to the infusion center for a longer than normal session due to the addition of Keytruda. The infusion appointment began at 8:30 AM with the usual blood draw to make sure Lauren’s numbers are within range.  When the nurse came back to us with the results, it showed that Lauren’s counts have decreased again, in particular her hemoglobin and white blood count.  It was within range to start treatment, but again the nurse was concerned that another blood transfusion might be necessary before the end of all treatments.  We will probably know more going into next weeks treatment whether Lauren will need a blood transfusion or not, but considering her hemoglobin went from 11.4 to 9.4 in a week and the limit before a blood transfusion is below an 8 is it’s a sign that the chemo is taking a toll.

 

In my opinion, Lauren has been taking a beating from these weekly treatments compared to the beginning when they were every other week. It just seems like her body doesn’t have a chance to recover between infusion sessions.  The side effects have remained the same, which include:

·       Constant fatigue

·       Loss of appetite / inconsistent food likes

·       Nausea

·       Heartburn

·       Irregular sleep patterns

·       Menopause symptoms

·       Emotional rollercoaster, respectfully and expected

·       Inability to have a glass of wine (booooooooo)

Who would want to have chemotherapy after seeing those side effects?  I sure as hell wouldn’t, and I can only judge what I see on the outside, but I can see her fighting everyday to try to live a “normal” life, whatever “normal” is at this point, both our lives have changed.

 

One thing that came back to mind from Lauren’s call with the nutritionist last week was something that she said about people going through chemotherapy and are in the home stretch for completion. The nutritionist stated that many people tend to give up and stop treatment because of all the shitty things that happen to your body.  With me taking some time off, it has given me the opportunity to be that annoying voice in Lauren’s ear to remind her to stay strong and that it’s almost over.  I need her and she needs me. 

 

More to come after we meet with Dr. Vandermolen next week and have an update on Lauren’s blood count and if treatment #4 can presume next Tuesday.  But 75% done and its an uphill/downhill battle the next few weeks.

Chris

Chris here. Just a brief update before we get into Lauren’s awesome post about genetic testing and what we have learned going through this process. Lauren is down to five remaining chemo sessions. No new updates from Dr. Vandermolen at this point.  Lauren has been having a hard time with food trying to figure out what tastes good, or what agrees with her stomach.  We had a call with the nutritionist to see if she had any recommendations on caloric intake, protein, and what to eat more of, or avoid, when it comes to fruits and vegetables.  The nutritionist suggested Lauren try Kefir for additional protein, but that did not fare well. For the first time since starting chemo, Lauren’s stomach did not agree with it and we will just leave it at that. 

I have decided to take some time off from work to focus my attention on Lauren during the last few chemo sessions because there is no consistency with everything; that includes food intake, being nauseated, fatigue, etc.  I had to step away from the stressors of work temporarily to make sure my stress doesn’t fall onto Lauren because that more stress is the last thing she needs.  Overall, plugging away. Tuesday will be treatment 12 and we’ll share an update again soon.

411: Genetics – From Lauren

I thought it would be important to share what I’ve learned about genetics and genetic testing.  This is what I’ve gathered from discussions with a few different doctors and genetic counselors.  Keep in mind I do not Google anything unless I don’t understand a word, but nothing in regards to my Cancer, treatments or outcomes has been Googled and all of this information is what has been shared with me.

First, my mom, maternal grandmother and sister have all tested. First person tested was my mom, who we confirmed is the carrier of the BRCA gene. Once we confirmed that my mom has BRCA, the next people to test were my grandma (since my grandpa passed, we can’t test him!) and my sister. Having my grandma tested helps to guide which side of the family needs to be made aware of the results, either her nieces/nephews or my grandpa’s nieces/nephews.  My grandma and my sister’s results came back and concluded that they are both negative for the BRCA gene.  This basically means that my maternal grandpa was the BRCA carrier in our family.  Thanks grandpa, you really left your mark 

So, based on these results my mom will begin high screening for breast cancer more regularly than in the past and has already undergone a hysterectomy this week for preventative measures.  My grandma and sister will not do anything different in terms of screening since they are not carriers of the gene. 

Here is what I know/understand about the BRCA gene.

• You have a 50/50 chance of receiving this gene from your mother or father, if they are a carrier.
• If received, your chance of breast cancer goes from 12% (reminder that 1 in 8 women will get breast cancer over the course of their life) to 65-80%…holy shit! 
• If received, after a mastectomy your chances of breast cancer reoccurrence is about 1-4%.  I've heard of countless women who have had recurrences (different forms of their original breast cancer diagnosis), seems like stats change with research here pretty regularly and I did not ask those Women if they had mastectomies or not (I kind of don't want to know).  
• If received, your chance of ovarian cancer goes from 1-2% to 25%, again holy shit. However, if you’ve taken birth control for 5+ years your chances decrease about 50%…silver lining, but still high.
• If received and you have children, they won’t test your children until they are 18 because 1) let your kids be kids, but 2) kids do not develop these types of cancers, so better to wait until they are older and can make the best choice for themselves.
• If you do not receive this gene, you cannot carry it to your children, even if it runs in your family.
• There are 2 forms of the BRCA gene, 1 and 2. Each carry’s a higher risk for certain cancers.  I am BRCA-2, again making me more susceptible to breast cancer, ovarian cancer, melanoma, prostate cancer (not something I need to worry about!), and pancreatic cancer. You can only get 1 or 2, not both mutations…phew!  
• Even if you aren’t a Ashkenazi Jew you can still carry the BRCA gene, it just happens to be more prevalent in Eastern decent Jews for some reason. 1 in 400 people carry the BRCA gene and then 1 in 40 Ashkenazi Jews carry the BRCA gene. 

So all in all after everything I have learned about genetics and the BRCA gene, I have some very serious questions.

• Why in the hell does no one ask you about your family history when you are younger, say 18 when they should start testing, specific to genealogy?  Those forms you fill out at the doctor’s office talking about your family history are pretty lame when you think about it and think about the fact that no doctor (at least in my experience) really gets into the details - I wonder if they even read it once you fill out all of that paperwork!
• Why does no doctor educate you or explain these things to you when you start to go in during your young adulthood to explain these percentages and start to talk about genetic testing, let alone genetics, let alone the high rates of breast cancer in women?
• Why does it take me getting Breast Cancer to then spark a conversation with doctors to then have my family checked?  I mean, your welcome family for paving the way, but come on medical people….why put someone through all of this if you can prevent any aspect and lower their risks? I found this lump in December and no one thought to start genetic testing on me back then. It took 5 months and a positive breast cancer diagnosis for my surgeon to start these tests, I’m so grateful she did but how come my own gynecologist didn’t start these back in December? Oh, because I said no family of breast cancer?! We’ll, that doesn’t have to be the case, there are countless women who are the first in their families!
• They can remove or identify certain genes or medical conditions during pregnancy, why can’t they identify this one? Why can’t they remove it? 
• Life insurance policies won't cover you if you come to them after a diagnosis (they consider it a pre-existing condition), they consider these genetic results pre-existing conditions - how does that make sense?  I didn't choose these genes, so why punish me?!
• They say women are supposed to wait until they are 40 for a mammogram, but seriously?! Cancer obviously doesn’t know your age, case in point I was diagnosed 3 days before my 38th birthday and have talked to countless women who were diagnosed younger than me.  Granted my genetics have played a part in this and I am sure if I didn’t have these genes I would be on the path of annual mammograms starting at 40, but still. Which by the way, women if you have no history of Breast Cancer in your family and are not a BRCA carrier, get your mammogram at 40 and do it annually!
• Chris and I are in the process of looking for a new general practitioner and when I brought up my diagnosis to the doctor we were interviewing she asked me if I had any family history of breast cancer, when I told her no and how I was surprised no one did genetic testing sooner, she told me…’we don’t really have a reason to test if there is no history.’ Ok, fine, but again how come no one did more questioning to determine that based on my family history I would need to be tested and also lady, when this impacts 1 in 8 women in the US AND 1 in 7 women in Orange County you’d think something would be done? Needless to say, she isn’t going to be our doctor!

With all of that, these are all things I think about, ask about and want to continue to make others educated about because no one told me any of this until my diagnosis.  Just like I want to educate you on the realities of living with cancer and going through chemo, my hope is that what I’ve learned about genetic testing only gives you more ammo to either fight for yourself or fight for me!