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!

 

8/10/2022 Update – Blood Transfusion & Treatment #10

WOW, yesterday (8/9/2022) was a day, a really long one at that.  My transfusion appointment was scheduled for 8am at Hoag in Newport, so of course we arrived right on time.  We went in with no expectations other than for me to have more energy post transfusion. They took me back, Chris could not come, at around 8:15.  Re-drew my blood to determine what my blood type was to match me with a donor.  The nurse told us this process takes about 15 minutes on a normal day, but of course, they were having issues at the lab and it took 1.5 hours to get my results back.  So here we are, it’s now 10am and we are told that the entire transfusion process will take 2 hours per bag, and I need 2 bags, so expect to be done around 2:30pm.  2:30pm rolls around and I am itching to go, but of course my last bag isn’t complete.  The nurses then realize that the saline bag had somehow switched over and the blood transfusion had stopped, soooo back we go to the blood bag, leaving me there an additional hour to complete. An additional 2 hours of sitting around waiting yesterday made me exhausted and agitated.  Post transfusion I was feeling better, but waking up this morning I felt A LOT better.  No head fuzzies, no shortness of breath just going up and down our stairs, the transfusion gave me the energy I needed.

The facility at Hoag was noisy, crowded and hard to get some rest even with the Benadryl they had given me, I had a really hard time relaxing as the energy there wasn’t the peaceful Keck I am used to.  Plus, they checked my vitals after the first 15 minutes of each new bag and then again, every hour.  It definitely wasn’t Keck and I missed the nurses that I’ve become so comfortable with.  However, the nurse I got must have been fate.  Her name was Sherry and she was so sweet.  We got to talking and she told me she was diagnosed in November 2021 with Triple Negative Breast Cancer, just like me, and had finished her treatments in April with her surgery in May and had only been back to work for about 6 weeks.  It was really nice to talk to someone who has recently gone through this, we swapped stories of food issues, emotions, how we countdown every little thing, etc, etc.  I was grateful I could have a nurse that could actually relate to how I was feeling.  She told me she had a blood transfusion around week 10 of her treatments and then didn’t have to have one again, so hopefully that is the one and only time I’ll need one during the remainder of my 6 treatments, but I am glad I did it because it helped me feel a lot better and all I want is to feel as normal as possible.

 

Fast forward to today, treatment #10 is COMPLETE, 6 more to go!  Getting there and making steps forward, that’s all I can ask for.  Finally, I’ve made it to the double digits.  I walked in to treatment today with color in my face and energy I haven’t felt in weeks.  The nurses were so happy to see that I was doing better that when they drew my blood before the infusion, they were shocked that my hemoglobin count went from 7.6 to 11!  Apparently, it’s normal to jump 1-2 points, but to nearly double that goal was exactly what they wanted to see.  My mom took me to treatment today, was an excellent nurse and got me snacks and made sure I was ok, and of course told me she loved me along the way.  It was a bit longer of a treatment today, there were delays in the pharmacy in getting my meds so they didn’t actually start my infusion until about 2:45pm.  I’ll be curious how this coming week treats me now that I’ve had the transfusion and will be documenting all the things.  

 

This week has been draining, physically and mentally tough, but I am reminded of my creed and embracing it’s every word.  I’ve been reading a quote each morning and the other day was about moving forward and that’s exactly what I am doing, moving forward – checking the days off, checking the treatments off – making progress and trying not to look back.

 

All my love,

Lauren

8-8-2022 Update - Just a minor speed bump

Hi everyone,

 

Hope everyone had a good weekend.

 

Being that we didn’t provide an update last week, this blog entry will be a combination of last week’s visit with Dr. Vandermolen and an update from today.  Lauren did have a little setback today which prevented her from receiving her infusion, but I will cover that later in this post.

 

8-1-2022

The morning started off like any other trip to Keck Medicine for her infusion session.  This morning, we were scheduled to meet with Dr. Vandermolen for a routine checkup.  No real significant updates from the doctor other than telling Lauren she is doing great.  No concerns were brought up by Dr. Vandermolen and again, he didn’t screen for the tumor.  Just the basic stethoscope to the back to check on breathing, and a glance at her legs for swelling and a check on some lymph nodes, I’m assuming.  The doctor’s visit ended with Lauren addressing her sleeping concerns and Dr. Vandermolen reaffirming her usage of Ambien, and that he wants to see her in two weeks.  So far so good.

 

I left Keck Medicine to finish up some work at home and this time it was Lauren’s mom to stick around to be with her during treatment.  Treatment time from start to finish was a little longer than the previous week as Keytruda (immunotherapy) was administered.  As the week went by, Lauren had her ups and downs when doing basic things around the house or even during our evening walks.  She would get winded easily or would feel slightly lightheaded even with light levels of activity.  We both just chalked it up to the medicine affecting her body’s ability to extract oxygen from breathing.  

 

We are almost to today.

 

The weekly infusions have been a bear on Lauren compared to when they were occurring bi-weekly.  With the bi-weekly infusions, they wreaked havoc on Lauren physically and mentally, but at least there was time for her to recover until the next session.  During the off weeks of her bi-weekly infusions, I would say she was almost 100% in being able to do the things she wanted to do, eat what she wanted to eat, and even have an occasional sip of wine at dinner.  These weekly infusions, despite the medicine not being as “harsh”, just don’t seem to allow Lauren the time to recover between appointments.  Her energy levels have been extremely low because we know that she will feel lightheaded or nauseous and it’s hard to see her in this position even from just a walk around the block.  

 

And here we are to today, 8-8-2022.

 

As we have mentioned before, Keck Medicine performs a blood panel before every infusion to ensure her numbers are in an acceptable range for her body to accept the chemo medicine.  Today, Lauren’s hemoglobin numbers were low, low enough that the nurses were not comfortable in moving forward with treatment today.  The next course of action will be tomorrow, where Lauren will undergo a blood transfusion at Hoag Hospital to help bump up her numbers.  Is this the news we wanted to hear today, absolutely not, but we both knew that this might happen, especially since her numbers just don’t seem to be rebounding as fast as we had hoped for.  So, as it currently stands, the blood transfusion will be tomorrow, and Lauren’s new infusion days will be on Wednesday.  The silver lining to this is that Lauren should be feeling great tomorrow with added nutrients and additional red blood cells in her system, additionally the nurse said that if she hasn’t needed a blood transfusion until this point in time, she’s doing pretty good and hopefully this will be the only one she needs, but only time will tell.  

 

I will try to get two additional updates this week covering her blood transfusion tomorrow and the blood results going into Wednesday’s infusion treatment.

 

Thanks for everyone’s patience and the continued support.

 

Love,

 

Chris