Medical Update, 2nd of 2020, part II

After I wrote such a long post on Monday, I realized that there were some rather humorous things that happened while I was in the hospital. Yes, even amongst the pain and misery and general yuckiness that happens when they wake you up every few hours to make sure your vitals are still in normal ranges, there were some spots that were quite funny. It is important to remember these bright spots!!

First up, from the emergency room. When I arrived at the emergency room in horrible pain, the ER doc was worried that I might have a compression fracture in my spine, so they sent me for xrays. I was pleasantly floating in a sea of morphine, so I honestly didn’t much care about anything, but I did eventually notice that people who came in to the waiting area for xrays after me were being taken in before me. I mustered the energy to ask for a status after a bit and was told that I hadn’t been taken back for my scans because they were waiting on the results of my pregnancy test.

In “normal” visits, this usually makes me a bit mad because my records are pretty clear. The influence of the morphine made me giggle a little, I told her that they’d not performed a pregnant test, and that pregnancy was literally impossible because I’d had a complete hysterectomy in 2017. The look on the woman’s face was beyond priceless and they took me right back, apologizing profusely.

I may have repeated the tired joke about assumptions, while giggling …. not my usually mo, but I’m also not usually on narcotics.

The second example is maybe more of a hmmmmm than a funny. There was a sign in my hospital room that couldn’t be missed, it was right on the outside of the bathroom door.

Elliot and I spent an inordinate amount of time pondering and discussing why it says “very good care” and not “excellent care.” Seems they are setting the bar a little low or something. I did get excellent care from almost every person I came into contact with, but we just couldn’t let this one go and besides, sitting around in a hospital room is not all that exciting so we had to find something to talk about!

The third and final hilarious incident happened the third and last night I was in the hospital. Elliot stayed with me that night and he brought some of my home medication, which included my medical marijuana. I’d been given clearance to take my home medication in the hospital since the hospital pharmacy just doesn’t stock the things that I normally take, like Piqray or medical marijuana. So, we’d settled in for the night, I took my normal night medication and the CNA came in to take my vitals. While my blood pressure was normal, my heart rate was rather high. I knew why. When she asked if I was in pain, I said, as innocently as possible, “I’m always in pain.” As soon as she left and probably noted that I needed a psych consult, I immediately turned to Elliot and giggled about being high. He, of course, laughed his head off. I know, I had permission and I have a prescription, there’s still just a little too much of the rule following midwesterner in me still.

Proof that circumstances, albeit often grim, are not all doom and gloom. There are always bright spots, sacred moments, hilarious moments and moments that remind us that we are human.

I am reminded of a poem that I read in the play IV where Anya Silver talked about smiling and wishing the nurses a Merry Christmas amidst the horror of bad news and how we must retain our humanity. It’s important, these glimpses, of a life without cancer, these glimpses that remind us we are more than this disease.

Medical update, 2nd of 2020, medical mysteries

I had not planned to post yet another medical update, nor do I really like having information to share that constitutes a medical update; however, such is the existence of those of us living with Metastatic Breast Cancer (MBC).

So, here I am.

Last week, as Elliot and I were preparing to head to Orlando on Sunday to assist his father in settling into a new nursing home, I didn’t feel well. It was a migraine, complete with nausea, light and sound sensitivities and generally yuckiness. I tried to go, I really did, but that just didn’t happen.

Sunday afternoon was when I started vomiting. It may be TMI, but that was the beginning of nearly four (4) days of intractable vomiting. That’s literally the medical term for can’t stop vomiting, throwing up everything, misery to the nth degree. Fancy, right?

The reality of it is, it sucks.

Following my doctor’s advice, on Monday we went to urgent care where I got fluids and medication. That worked for about 6 hours. We went back to urgent care the next day, following my doctor’s instructions, where I received fluids and medication, plus they did a urinalysis and bloodwork. Looked like I had a UTI, so this time I left with antibiotics, which I immediately threw up after taking them.

By this time, it was pretty late on Tuesday night. There was a certain amount of desperation that had been building. I had had some body aches, but now it felt as if my entire body was on fire. I couldn’t keep down any pain medication so that didn’t help. I fished out my vape pen from when I’d first been diagnosed that I only use for break through pain and I vaped, A LOT. Once I’d nearly emptied the cartridge (hard to do, but I was DESPERATE to sleep), I was able to sleep for a few hours. As an aside, I’ve never been that high before and it was a glorious feeling for a few hours — my body didn’t hurt and I could finally relax.

My sweet husband was up with me nearly the whole night. It hurt so much to vomit that I would wail and cry each time I did. It was one of those marital moments that you can look back on and say, this, this is how I know he loves me.

When morning came, we decided to head to the ER. We’d had enough.

Once we arrived, we were brought back quickly and I got morphine really fast. Pretty sure they could see how bad I felt. Those 4 mg of morphine changed my life, literally. I could finally get comfortable for more than just a few hours. I got more anti nausea medication too. I could finally relax.

I’ll spare you the various potential diagnosis they tried on for size. Some of them were pretty scary. The cause of all this misery is still unknown for sure, but what we do know is that I showed up to the ER with metabolic acidosis.

Metabolic acidosis is a condition in which there is too much acid in the body fluids. It can also occur when the kidneys are not removing enough acid from the body. There are several types of metabolic acidosis.

Diabetic acidosis develops when acidic substances, known as ketone bodies, build up in the body. This most often occurs with uncontrolled type 1 diabetes. It is also called diabetic ketoacidosis and DKA.

Hyperchloremic acidosis results from excessive loss of sodium bicarbonate from the body. This can occur with severe diarrhea.

Lactic acidosis results from a buildup of lactic acid. It can be caused by:

• Alcohol

• Cancer

• Exercising intensely

• Liver failure

• Medicines, such as salicylates

• Prolonged lack of oxygen from shock, heart failure, or severe anemia

• Seizures

Other causes of metabolic acidosis include:

• Kidney disease (distal renal tubular acidosis and proximal renal tubular acidosis)

• Poisoning by aspirin, ethylene glycol (found in antifreeze), or methanol

• Severe dehydration

Citation: https://medlineplus.gov/ency/article/000335.htm

That pain I had, was literally the acidic blood in my veins affecting my muscles. Crazy, right? I arrived at the emergency room with a white blood cell (wbc) count of 15.3. I was thinking sepsis, I was thinking, maybe this is the end. I was thinking, is my body just failing? I was thinking, I must have brain Mets. I was thinking …. NO, I STILL HAVE TOO MUCH TO ACCOMPLISH!

Throughout the time I was in the hospital, there were questions about whether Piqray, the medication I take to manage the sneaky cancer boogers in my body, was to blame. While I am not diabetic in the traditional sense, Piqray causes hyperglycemia, which means I take Jardiance, a medication diabetics often take to manage their sugar. Jardiance assists with removing the excess glucose before it becomes insulin and that happens through the urine (TMI, again?). So, some of the diabetic complications do apply to me even though I’m not diabetic. Explaining that distinction is sometimes difficult and lots of medical people have argued with me, insisting that I do have diabetes. However, after my doctor consulted with Novartis, the manufacturer of Piqray, and consulted with others, including my new nephrologist, the conclusion is that Piqray is not to blame and I can stay on it. Woo-hoo.

The life of a metastatic breast cancer patient is not easy, but there are some bright spots to focus on if you try to find them.

For instance, my sister spent the first night at the hospital with me and when there was a nurse in training learning how to access ports who began to try to access mine, she got in her face and made her stop. She wasn’t about to let someone learning to stick me after all I’d been through. She’s my younger sister by 18 months and I’m pretty sure that was the first time she went all mama-bear on my behalf. Again, a moment where you can look back and say, this, this is how I know my sister loves me. She also made sure I had my phone charger and plugged my phone in whenever we could–soooooo key!! Amy is also an amazing photographer. She photographs natural beauty products and she brought a bag of stuff for me to hand out to the nurses. Head on over to Instagram and follow her @beautystealsinward for a myriad of ideas and knowledge about companies who are doing right by their employees, their customers and the environment!

I’m so thankful for my family who stepped up in many ways to ensure that my boys got to school, did their homework, ate food, slept, etc. It’s a huge weight off my and Elliot’s shoulders to know they are cared for, loved, and we don’t have to worry, we can focus on my care. My mom, dad and sister went above and beyond for us and we’re forever grateful to them. I’m not always good about asking for help and when you visibly see the love in the actions in others, that’s when you really know you are loved.

I’m also thankful for all the friends who have checked in on me and have offered solutions and comfort and support. Reminders that we are not alone is huge when you are not feeling well. Nataly, in particular, spent much of the day with me one day and gave me these awesome socks with our picture on them!!! The nurses were very complimentary and I’ve given out the place she got them to a lot of people.

I’m thankful for my port and how that saves me from being stuck so often. One of the more experienced nurses gave me some sort of special needle in my port that allowed me to get the contrast for my Brain MRI in my port. Since I’ve lamented for the past two years that I didn’t know to ask for a power port back in 2017 when I got mine, that has made me so happy!! I now know it’s possible, so I’ll be asking for it. Fewer sticks the better!!

Before I end, I want to talk about one of the few panic attacks I’ve had during this whole cancer experience. On Friday, when I was originally supposed to go home, I woke up after a pretty rough night to yet another migraine and vomiting. I also had tingling in my feet and hands. Then, my hands stopped working. I literally couldn’t move my fingers and nearly dropped the bag of vomit all over myself. I think I was crying or maybe wailing, things are a bit blurry. The nurse got me medication quickly and I could relax and my fingers worked again. Since I’ve not been able to keep much of the Effexor I take down because of the vomiting, I’ve wondered if that played a role in how much anxiety I had. I also understand that the seizing up of my hands and the tingling was from a severe potassium deficiency.

Whatever the cause of my panic, I’m reminded of how powerful our minds are and how much control what we think has over our bodies. I’m not saying positive thinking is the cure all, just that what we are thinking or feeling does have an effect. That effect can be positive or negative. In that moment, when I couldn’t stop vomiting, I was in excruciating pain from my head, and my hands didn’t work, all I could say was … “something is wrong.” I kept repeating that over and over, almost like a mantra. The nurse tried to get me to calm down, by saying calm down (hint hint, not the best technique) but I just couldn’t. My rational mind was off line and all I could feel was panic.

Once the morphine hit my system, I was able calm down and my hands worked again. Once the physical symptoms dissipated, the feelings I had about those symptoms became manageable. Many of you who know me know that I’ve spent a lot of time and effort avoiding taking narcotics. I do want to make very very clear that I know there is a place for narcotics, there’s a time when they are appropriate. This was one of those times.

For everyone who stuck with me to the end of my saga, thanks! It was a long week for everyone and I’m so happy to be home.

Medical Update, first of 2020

It’s 2020 and I’m still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I’ve been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently and urgently. While I am grateful to the doctors on my team who listened and responded, I’m extremely disappointed that my experience with a new doctor who was supposed to offer options had to result in me filing a formal complaint against her and her physician assistant who dismissed my pain and acted as if I was making it up.

I do have certain expectations of the people who are paid to assist me with my medical treatment. My visits with these people are not voluntary, I have to go. Their job is clear … to treat my cancer, the symptoms of that cancer along with the symptoms of the medication the doctors prescribe for me, and to look at me as a human being while performing task one and two. To me, the third part becomes extremely important when pain is involved and when any part of this three legged stool is compromised, the entire thing collapses.

So, here’s the chronology and the remaining tasks …

I’ve seen my physical medicine doctor, who was a bit stymied by my symptoms. He attributed the pain to the Mets in my right leg/hip. Some of you may remember that I had a 5 cm tumor in the middle of my right femur when I was diagnosed back in 2017. That femur was about to shatter when an orthopedist inserted a titanium rod inside that femur (along with the one on my left side). My right leg has had a lot of trauma, but this was a new pain and it has increased over the last few months.

After the physical exam, my physical medicine doctor sent me for xrays and an MRI. The X-rays showed that the hardware (one rod and 4 screws in each femur) are still properly placed. Some of you may remember that I developed heterotrophic ossification (HO) in early 2018, which is when microscopic shards of bone are left in the muscles and then it starts to grow. Super painful! The really bad thing is that the protocol is simply to increase muscle mass to deal with it, while dealing with and/or medicating the symptoms. The HO is mostly absorbed on the left side but there’s some still showing up on the right side, which could be part of the reason I’m in so much pain.

I had the MRI on Christmas Eve and had to repeatedly call and follow up to get the results from the orthopedic oncologist who was so terrible. When she finally got on the phone with me (after I told her supervisor I wouldn’t get off the phone unless she told me), she told me that I likely have progression and I should talk to my medical oncologist. Her dismissive and snippy attitude set me off and I had a rather loud conversation with her about how she should talk to patients. Pretty proud of myself that I managed not to curse her out but hopefully made the point that you don’t say stuff like that which raises anxiety exponentially, don’t offer any solutions, and then just get off the phone. I’m also still pretty incensed that she made no effort to talk to the rest of my medical team and basically just wrote me off.

So I met with my medical oncologist, who is amazing and never makes me go for longer than a day without knowing what’s going on, and we discussed the results of the MRI. There is a met in the head of my right femur that is pretty big. I’m not in danger of my bone shattering any longer because of the hardware, but I still have cancer there. Between the two MRIs in May of 2018 and December of 2019, the met grew from 5 cm to 8 cm. However, I’ve had 5 PET scans in that interval as well and the measurement that indicates activity (aka likely growth) has gone down, especially since I’ve started my current treatment. My last PET was in November of 2019, which was after the pain started.

If your head is spinning, just think how I felt!?

Realistically, I could be in the midst of a progression, which means my second line of treatment may have failed me after 6 months or maybe not. That kind of uncertainty is infuriating. Absolutely infuriating. Almost as infuriating as the pain that gets so bad I’ve had to resort to taking the oxycodone that my pain management doctor insists on prescribing to me even though I resist taking it. I hate how narcotics make me feel but just the fact that I’m taking it nearly every day should give some insight into how bad it is.

The plan, for now, is to stay on my current treatment, get a physical therapy consult to see if further exercises would be helpful, and then a PET in February, which would be the usual three month schedule. I’ve not had to change my routine much because I’m literally the most stubborn person about cancer not taking things away. I don’t enjoy being in pain or the side effucks of the medication I have to take to function, but I’m functioning.

Actually, I’m more than functioning …

My kids have had an amazing Christmas break, the connections I’ve made during 2019 means that I’m stepping into 2020 with options and ideas and really cool opportunities, my husband and my boys are healthy, I love connecting people with lawyers to do pro bono work, I love writing this blog and for ABC, which is a division of HealthUnion, a company full of amazing people, I love serving on the PTA Board at my kiddo’s school and volunteering in the library and I cherish the friendships I’ve made over the past two years, inside and outside of the Mets community.

Sometimes all you need to focus on the silver linings is to write them down.

So that’s my update … I’m starting off 2020 with pain but with a full heart and so much gratitude that I’m still here, still functioning, still parenting, still contributing and that’s the way it will be until it changes. I’m looking forward to seeing how my word of 2020, SACRED, is weaved into the fabric of the year and our experiences as a family.

Reflecting on 3 Cycles of Piqray

We’re halfway through November, 2019, and I just picked up my fourth cycle of Piqray from the specialty pharmacy at my cancer center yesterday.  I also found out yesterday that my first PET scan since starting Piqray demonstrated that my cancer has had a partial response to the medication over the past three months. While I’m not satisfied with partial (because I want the whole enchilada), it’s definitely better than hearing progression again.

It’s a good place to be, three cycles in, to know that the medication appears to be working.  At this point, here’s an update of where I’m at with the experience of Piqray:

  1. Sticking to a low carb, keto-like diet has been helpful to support the efficacy of the medication and keep my sugar levels in the right range.  When I’ve cheated, my body has absolutely let me know.
  2. The nausea is here to stay, it’s low level, thank God, and manageable, but I do have to eat like a pregnant person.  Lots of little, protein rich, meals throughout the day and I keep my ginger ale handy.
  3. I spent a lot of time trying to figure out Metformin and how to tolerate Metformin and then, my medical oncologist ran across thisletter to the editor in the New England Journal of Medicine and now I’m on Jardance instead.  The side effects seem generally the same but I’m still adjusting to a new medication.  I’ve reached out to Novartis to see if theirrecommendations will change and haven’t heard anything yet.  
  4. The rash so many people struggle with has not shown up, but I do still have a lot of dry skin.  I pretty much have the skin on my face under control, but inside my nose is still super dry and easily irritated.  I’m still taking Claritin every day and will continue to do so–that’s also probably contributing to the dryness in my nose!
  5. Piqray is still a very weird name.

I’ve a meeting planned with Novartis next month at the San Antonio Breast Cancer Symposium, so let me know if you have any questions about Piqray and I’ll be sure to pass them along and then get them answered and disseminated.

Piqray, Metformim, Nausea and B12

I’m about halfway through my second cycle of Piqray. We added Metformin to help control the known side effect of hyperglycemia, or high sugar. Despite the fact that the hyperglycemia was under control, the nausea was not under control.

I remember experiencing a constant low level nausea while pregnant with both of my little guys. Whether it was the hormones, the fact that both of my boys had a full head of hair, or just the fact that I’m a woman who was carrying a male child, I was freaking nauseous throughout both pregnancies.

Having the nausea with no baby at the end of the pregnancy or literally any light at the end of the tunnel is not copacetic. Not at all.

I didn’t tolerate Zofran well during chemo, so I’ve been taking Kytril/Granisitron when necessary but I can only take it every 12 hours. I asked my doctors to look at other options, but my insurance wasn’t cooperative and every medication carries more side effects and contraindications with the other medication I’m already taking.

So, what to do?

I saw both my acupuncturist and my allopathic neurologist and between the two of them, we discovered that my B12 levels were basically nil. I already knew that I was struggling to keep B vitamins absorbed, but I didn’t know that Metformin blocks the absorption of B12.

What?!

After an injection of B12 and a new supplement that includes all of the B vitamins, my nausea is low enough that I don’t need to take Kytril or anything else. Odd moments, movements, or smells can still resurrect the nausea. Kinda like being pregnant, still.

But, so much more manageable. I’m so amazed that something so low tech and without side effects has helped. Before anyone says anything, yes, I’m being careful and my doctors are monitoring everything. I completely realize that vitamins can be harmful in too large doses.

For now, I’m just enjoying some food again, without the nausea.

Palliative Care

Palliative care is something I never knew anything about until my terminal diagnosis. Why would I? It’s not something that is common knowledge or commonly needed until it is. Before my diagnosis, I thought of palliative care as a subset of hospice. I’ve since learned that many people view palliative care in this category. As a result, there are many misconceptions since palliative care and hospice are very different.

Let me first share my own experience. I was initially diagnosed in Orlando, where I used to live and I completed my active treatment there. My period of active treatment consisted of four (4) surgeries, IV chemo (the red devil) and radiation. I discovered I was Stage IV after the first several surgeries and initial chemo infusion, so the remaining treatment changed substantially after that discovery. My “active treatment” extended from March, 2017 through and including October 2017.

As soon as I hit the plateau of the end of active treatment and the beginning of targeted therapy, we moved from Orlando to Miami. There are a lot of reasons we chose to move and one of the less pleasant aspects of the move was having to find a new medical team. My new medical oncologist referred me to one of the pain management doctor at my new cancer center and that pain management doctor happened to also be a palliative care doctor.

I love my palliative care doctor and her team.

I don’t say that about all of my doctors. Frankly, most of the medical treatment I receive is often painful, difficult, anxiety-producing, and time consuming. I hate to wait and I wait in waiting rooms an awful lot.

I never wait for my palliative care doctor. She runs on time and she, and her team, spend a lot of time with me. They ask me about all kinds of symptoms, about my quality of life and they LISTEN. While they have to document my visit with them similarly to my other doctors (they all have to bill the same insurance!), they look me in the eye, they tell me what they are doing. If I call my palliative care doctor’s office, I get right in. I don’t always talk to a person right away, but they always return phone calls. Quickly too.

Once or twice, I encountered issues with medication, with putting together the big picture of dealing with all of my doctors and advocating for my quality of life. My palliative care doctor stepped in and interfaced with my other doctors.

I don’t know what other people’s experiences with palliative care are and I suspect that part of my experiences are directly related to the people involved, not just the discipline, but I know that’s not the entire story. So much of our medical system has become about moving the patient through as quickly as possible. I get that doctors have to make money; however, as a patient, I need to know that my medical team cares about me and my concerns.

I know that my palliative care team cares about me, cares about my pain, cares about who I am as a person.

Everyone with a terminal or even a chronic diagnosis should pursue the possibility of palliative care. It’s not for one set of patients, it’s for anyone whose medical issues interfere with their quality of life. Seeking out and maintaining my visits with my palliative care team is part of my commitment to self-care.

After all, everyone deserves to have their quality of life be a priority to someone.

My Fourth Week on Piqray and Faslodex

This week has been a doozy. Lots of things going on involving cancer and not involving cancer, losses and victories, sadness and celebration. This is becoming normal for us, although I can’t get used to the amount of my friends who are dying.

Anyway, here’s my list for this week …

  1. I’ve added back in some carbs after reading some suggestions and I frankly feel much better. Sugar has stayed pretty stable thus far.
  2. The nausea has remained rather consistent, which hasn’t been fun. It feels like being pregnant and I think my go-to anti-emetic, Kytril, since I’m allergic to Zofran, isn’t working well for this type of nausea. Definitely something to talk to my medical oncologist about.
  3. No rash, but my face is so dry. My sister has been helping me to find good moisturizers to use and I’m constantly slathering myself in cream.
  4. And another note, my poor nose is so dry that I’m getting regular nosebleeds too.
  5. A side effect of the nausea and diarrhea I’ve been experiencing is that I’ve lost some weight. Not that I really needed to loose any, but my clothes fit a bit differently and that isn’t a bad thing.
  6. There was some weirdness this week with the pharmacy at my cancer center. There were two scripts in the system and despite my doctor’s nurse practitioner discontinuing the lower dose and renewing the original higher dose, there was lots of confusion.
  7. I’m not very patient with confusion. It feels completely wrong that the medical professionals get things so mixed up and I have to keep checking up on things.
  8. Final loading dose of Faslodex is today, along with some bloodwork. Tumor markers haven’t changed much but they weren’t super high to begin with since we caught the progression early.
  9. Some of the women I know on Piqray are really struggling with getting it covered by insurance.
  10. Thankful for the good friends I’ve made who have helped me with connections to people in the right places.

This weekend is going to be super fun and I’m looking forward to focusing on loving on my boys, seeing some dinosaurs, and some special time with my sweetie.