Everything… In a Nutshell

img_1685.jpgIt’s been almost a year since my last blog entry. Our life and Joey’s journey has kept us very busy and very tired. I wanted to give a formal update on our lives and experiences in the last 9 or so months on the blog tonight. Especially since I know sometimes the only updates we give are through social media.
Last time you heard from me, I was dealing with some major, major PPD. Like, MAJOR. I’d like to think I have come a long way with my PPD since then. I haven’t had any of the flashbacks I used to have and I no longer feel like an incapable wife and mother. Our little Jax-man turned 1 last month and he is not the needy, fussy baby he used to be. And I no longer feel like his behavior is a reflection of my depression anymore. Joey doesn’t feel miserable every single day any more. And Ian is still perfect, mostly. So I’d say that we, as a family, are making some progress.
Last November Joey had a Stem Cell Transplant done at the City of Hope hospital. He was hospitalized the day before Thanksgiving and was inpatient for a little over 3 weeks. Prior to his hospitalization, he had what’s called a “Hickman Catheter” inserted into his heart. The Hickman allowed them to collect almost 2 million stem cells from Joeys blood about 12 days pre-admission. They cleaned those babies right up and froze them until it was “Day Zero” also known as transplant Day or his “re-birthday”. Thanksgiving Day (Day Minus 7) he started a countdown to the transplant by receiving a series of different chemo infusions, seizure meds and cocktails of pills to help him handle the side effects every single day. After having his entire white and red blood cell count wiped out by chemo, he was ready for the transplant on December 1st. It literally took about 15-20 minutes for them to re-insert those stem cells right back into his body through the Hickman. I remember barely making it on time that day. If I would have missed the transplant, I probably would have hated myself forever. Fast forward 13 days of hell… Joey was discharged on December 13th and home just in time to prepare for Christmas.
At City of Hope and even at Kaiser Sunset, they stressed the milestone of Day 100. As I mentioned earlier Day Zero was the day they transferred his cells back and every day after that had a number that led us to Day 100. Day 100 just happened to be our oldest son Ian’s third birthday. During those one hundred days, Joey was not allowed to receive any type of cancer treatment while we let his body heal and recover from the transplant. Joey was feeling great, he looked fantastic and we were just so confident that the transplant was worth all of the blood, sweat, tears and killed every last bit of the cancer. Pet scan number one, post-transplant, sure made a fool out of us. Not only was his cancer NOT gone, it had spread to other areas of the body. If anyone remembers his initial diagnoses, he was placed at a stage 2a because his tumors were not bulky and because they were in two different parts of his lymphatic system ABOVE the abdomen. Well now he is in the “refractory or relapsed” stage of Hodgkin’s now because it spread to multiple areas above and below the abdomen.
​Now, this is where everything goes sour for us. For Joey, of course, because he’s still sick. For me, because where in the hell am I going to gather the strength for my family of 4 to add this huge boulder on to my shoulders. I was working 12 hour days, 4-5 days a week. Mostly because I was trying to get us back onto our feet financially. But also, because I didn’t know how else to handle things besides working my little butt off. I was struggling mentally and emotionally with this new road that life took us on. I’m not going to sugar coat it here, there was a moment where I almost crashed the truck into a wall on the freeway. Not because I wanted to leave this life, my children or my family and friends. But because those demons in my head were taking me to some pretty shitty places. I literally imagined how mad Joey would be at me for crashing his truck and that was my saving grace. Thank God I was not in my own car that day.
Moving on from that what could have been tragedy… I decided to place my rage into finding a way to cure my husband. I spent many sleepless nights searching government websites for clinical trials that Joey might qualify for. I joined groups and forums with other relapsed and refractory Hodgkin’s patients. I researched the shit out of every immunotherapy on the market these days. I spoke to people from all over the US who were treated at top notch cancer centers and asked what worked for them. What sequence of drugs were used post-transplant, for how long and did that eventually lead them to remission? I was not ready to become a widow and I was for damn sure not going to let my kids lose their father. I am not the kind of girl that can NOT know what’s coming next. I needed to know what to expect, what was actually happening in his body and I needed to know what his options were since A, B and C were not working. I needed to know anything and everything so I can set him on the path of recovery.
That’s when I discovered the drug, Nivolumab. It is an immunotherapy and not a chemotherapy. It does not kill his bad cells like his other chemo’s did. This class of treatment helps his immune system teach the good cells to target and kill the bad cells. Nivo was recently approved by the FDA in 2016 as a treatment for Classical Hodgkin’s Lymphoma patients who relapse after a stem cell transplant. Our first appointment with the oncologist since we found out he relapsed… I asked for this drug. Enter clap emoji’s after every word. Dr. Fong said it wasn’t approved yet and that we would start with the immunotherapy, Brentuximab. Luckily, I already knew everything under the sun about this drug and I read great things about it as well. So, we agreed to the next plan of Brent infusions every 3 weeks for 3 cycles. We went home and after a few days I still felt uneasy about Brent because I really wanted Joey to start on Nivo. So, I personally contacted his bone marrow specialist, Dr. Zhou and asked him to change the chemo plan and/or refer Joey to the clinical trial that had just begun enrolling for a combination of Brentuximab and Nivolumab for patients exactly like Joey. What do you know, I was shut down AGAIN! BMT doc did not want to throw Joey into a trial that had an unpredictable outcome. Ok, I get it. He wants my husband to live and not risk him dying. But he still turned down my request for Nivo. At that point, I came to peace with the fact that both are highly qualified specialists who know what they are doing and I am just a desperate wife taking advice from strangers. Brentuximab it is…Right? Wrong!
Fast forward once again to 12 weeks later. 3 cycles of Brentuximab down. Joey still has his hair; his beard is growing in pretty hot now and the hair on his head is curly and actually black. He continued to lose weight, but not from the fact that he was sick every day. But more-so because he was sleeping so much he was hardly eating at all. A week or so prior to the Pet scan, Joey feels a new lump in his neck. Our spirits are low at this point, but still expecting a favorable response. Pet day comes and we receive the results of that particular scan. All I can say is they were devastating. Brent not only did not shrink any of the tumors, it metastasized even more. He now had mets down his spine, his liver, his lungs, the axilla, neck and probably more that we didn’t even know about. I failed to mention this earlier, but prior to this, the ultimate goal was to get Joey ready for another stem cell transplant. His brothers were both tested and it was determined one of them was a 100% match to him. So, the only thing holding us back from this transplant was the response to treatment. If these treatment plans did not work, his only chance at a cure was through the transplant. So, you can imagine how devastating the news of “further progression” meant to us. Days later, we are back in Dr. Fong’s office awaiting the next treatment plan that he and BMT Dr. Zhou had agreed upon. I will give you ONE guess… That’s right, he was finally allowed to start Nivolumab! Don’t even get me started on the range of emotions I had when I heard the news.​
The plan from this point was a one hour infusion, every other week for 2 months and then we would re scan after that. Now remember folks, if his cancer was still resisting the chemo then the transplant would be off the table. His first infusion of Nivo went terribly. Anything that could go wrong that day, went wrong. The chemo suite was jam packed, the poor nurses were over loaded with patients and that meant we had to sit in our little private room and wait forever. In no way am I putting down the oncology staff because they are amazing angels that bend over backwards for their patients. That day they were definitely over booked and/or under staffed. Hours later he finally gets the infusion and is it is near the end, he starts to have symptoms of an allergic reaction. His nurses did everything they could to take away the pain and slow the reaction down. It was a very scary experience to witness, especially since Ian was there the whole time and saw it all happen. Joey is allergic to almost everything when it comes to treatment so we all assumed it was an allergic reaction. We finally get to go home with the instructions on how to handle it at home in the even that his symptoms return. It had only been a few months, but I had forgotten how scary it is when the pain and sickness takes over. It got to a point where I could no longer help him from home and I had to call an ambulance and 1 in the morning. And my sweet little Ian and I watched the paramedics take Joey away. All I could do was blame myself for his pain. I fought so damn hard and wanted this magic therapy and all it did was cause him pain and land him in the hospital. What if this reaction meant that he could no longer receive this anymore and what did that mean for his future? Turns out it had nothing to do with the chemo and everything to do with the mets in his spine. It was nothing that strong pain meds and a very legit back brace couldn’t fix.
Now this is the last time that I’m going to make you guys flash through time with me. Every other infusion that Joey has had since that has gone perfectly. No reactions, no ER visits, no dehydration or anything major. This has indeed been as tolerable as I had been advised it was. There are other things I want to say about this round of treatment. But I will save that for my next post. Because Joey had his most recent Pet scan last week. And all I’m going to say right now is, its good y’all. We see the doctor Thursday where we will get ALL of the details and will have a new plan set in motion. And this where I’m leaving you all. I took you on a very short, but still kind of long, version of the last 9 months. I cant wait to update everyone on the specifics and a bit more on the ups and downs we have had the last couple months. Until then, let’s all continue to pray for Joey and continue to fight this fight with him. Thank you to everyone for their support during these last 18 months, this whole year post-transplant and for all the love, prayers and help you all continue to give our family!

Cancer, A Baby and PPD

 

When I found out I was pregnant for the second time, I was ecstatic. I was in shock because I was ready to just give up trying. Then the happiness and excitement started to dim because I felt sick all of the time. And then the pain came and I started to question why we tried to get pregnant so soon. It’s like my body forgot about all the shitty parts about pregnancy until I was reliving them again. Only being pregnant and a mom was so much harder. My pregnancy with Ian was a dream compared to how my pregnancy was with Jax. Once the morning, aka all day, sickness subsided, I was left to suffer with the horrible pain in my joints. I refused to take any pain meds and I just complained as my only form of relief.

When I found out Joey had cancer I knew that I could no longer complain about the aches and pains that carrying a life brought me. I had to focus on my husband, my son and keeping myself healthy enough to bring a healthy baby in to this world. My worries went from what is this baby doing to me, to what am I doing to my baby? I told my OB that I was no longer concerned about my pain but about making sure everything was planned around chemotherapy and recovery times. Did I begin to suffer from antepartum anxiety and depression? You betcha! I started to feel this tremendous guilt for bringing an innocent little baby into a life full of fear and sadness. I was offered so much help from family and friends but denied a lot of it because I just wanted to withdraw myself from human interaction. If they helped me, that meant I would have to see them or talk to them. And if I had to talk to them that meant I’d have to lie about how I’m doing and or pretend to be happier than I really was.

I didn’t want to tell people or have them figure out how scared I really was. Not scared for Joeys life or that he wouldn’t survive this. But scared as to how we were going to manage it. Scared that I wouldn’t know how to take care of him the way he needed me to. Scared that I couldn’t be the mother Ian needed me to be. Scared that my fears would jeopardize the health of my baby. Scared that this would be the trial that finally broke me. Scared that I wouldn’t live up to everyone’s expectations of “strong.”

Looking back now to Joey’s first chemo, to his first experience with anaphylaxis, to his first ER visit for pneumonia, it is literally a blur. I know the reason Joey survived those hard times because he had his family, my family, his friends and even strangers rooting and praying for him. But looking back to all of that, I don’t know how I survived it. I don’t know how I woke up every morning and fell asleep every night. It’s not Joeys fault he has cancer and it’s not his fault that I am so familiar with it. And it’s not his fault that my mind and emotions have taken me to a place that I’m struggling to come back from.

I’m going to talk about something I’ve only told to a few people. We all know how open I am about my lifestyle, my decisions and my past. But this, this is huge. I have never feared judgement more than I do about this. So if you are going to be a Judge Judy, just keep those comments to yourself. I watched my Grandpa die, I spent the last 48 hours with my Nino in his tiny hospital room, I watched my Aunt Becky die and waited for hours until the funeral home came to get her, I didn’t see my Nana die but I was there with her body for hours as we waited for the funeral home to come for her too. I’ve seen death, I knew how close it was from the smell and each time it happened, it killed a piece of me. When I was pregnant it happened the most. I suppose because I was the most vulnerable. Sometimes I couldn’t tell the difference between real life and my past experiences. I would find myself doing things that I’ve done before for other people, but I was doing them for Joey. I used to wake up in the middle of the night checking to see if my Aunt Becky was still breathing because I didn’t want her to die on my watch. But then I would realize it was joeys nose that was breathing and that Becky was already gone. I would hear monitors going off and thought it was my Nino’s morphine drip and got scared to see him get aggravated again but it was just my alarm to give Joey his medication. I would re-live these moments and believe they were really happening and then all of a sudden I was back in real life. I would dream of those experiences vividly but sometimes my subconscious would make it worse. Sounds a bit like PTSD right? At least that’s what my group therapist thought. I just dont understand why it took so long to surface.

Let’s fast forward a bit to Jax’s birth. Joey was 6 days post chemo and it was his 8th infusion. So his body was taking longer and longer to recover, his fatigue was more intense, his weakness was at an all time high. Plus, the day that Jax was born, Joey had to prep for a PET scan the next day. My OR nurses, doctors and anesthesiologist were all aware of Joeys condition and they were watching him as well. He made a huge turn around when Jax was born but then he started to fade fast in the early evening. I had a c section and still had a catheter so I couldn’t get up on my own yet, I was very sore and had no abdominal strength to get through the night alone. But thanks to my nurse for the diaper changes and the snacks, I managed to get thru the entire night without having to wake Joey up to help me. The next day he was gone.. All day. Pet scans require you to stay away from pregnant women and small children for at least 8 hours. So that plus recovery time from the day before, Joey didn’t get back to me until the evening and I survived another night without having to wake him up. Let’s say the 7 days I had Joey to help me with Ian was like living in paradise. And then he went back to chemo and that’s when shit just started hitting the fan for me.

I couldn’t be the caretaker Joey needed me to be. But in a way it forced him to fight harder through the pain and suffering because he couldn’t depend on me like he used to. Jax was a little newborn life sucking vampire. He ate every hour to two hours, he cried all the time, he never slept, he was gassy, he spit up often, he was everything he needed to be to challenge my inner strength and push me to my limits. Ian, although a very sweet and affectionate big brother, craved my attention and pushed me past my limits. Joey would be asleep and Jax would be asleep and Ian would cry which would wake Jax up and Joey would stay asleep which would bring me to my knees to ask god WHY?? It was just too much for me. But somehow I survived that newborn phase just don’t ask me how.

When I was alone, I would cry and cry thinking I was not the person people thought I was and that I could not handle this. I then questioned myself again, why did we want another kid. Which then reassured me that we would not be having any other kids after this. I don’t think I have it in me. I felt guilty for not being the mother that Jax needed me to be. I felt angry that cancer was doing this to my husband and my kids. I felt scared that my weakened mental state would cause life long emotional damage to my boys. After all, I believed and still do in a way, that Jax’s cry baby, grumpy attitude is my fault because that’s how I was when I was pregnant. He will not be the happy child that Ian was because I couldn’t keep my cool while pregnant with him.

But then, we got Jax’s tongue tie revised, I took him for chiropractic adjustments to help his gassiness, I started baby wearing to calm him down and slowly things started getting better with him. Joey finished chemo and he started to feel decent again. We were getting out of the house again and starting to see people again. We were starting to put the sickness behind us and we were starting to live again. And then the phone call came. The cancer is NOT gone and now we must prepare for a transplant. Which means I was going back to a life of fear, sadness, precaution and hospitals. And then that’s when the anger hit. Was it aimed at God this time? Perhaps. Did it put me back at square one? Without a doubt. Did it bring back the memories and re experiencing certain moments? Mildly.

Now, I’m in a new playing field. One that is built from fear and anger. That grows with anxiety and panic and succeeds thanks to luck and good timing. I know people are worried about me. I see it in some people’s eyes when they look at me. I hear it in their voice when I listen to their voicemails. I read it in their texts or social media comments. But I want everyone to know that yes, my emotions and my mentality might be a little fucked up but my life is not in any danger. I am too much of a chicken to try to hurt myself and I love everyone too much to leave them with my blood on my own hands. It is very obvious that I’m dealing with ppd and anxiety but I am NOT suicidal.

With that being said I’m asking my family and friends to be patient with me. You don’t even have to be understanding, just be patient. When I don’t answer your call, its because I don’t want you to hear the sadness in my voice. If I don’t respond to your text it’s because (either my baby is sleeping and my phone is on silent or..) I read it and it reminded me that I needed to get up and do something to take my mind off what you’re asking me and then I forget to respond once I sit back down. If you offer to help me with my kids and I don’t take advantage of the opportunity, it’s not because I don’t trust you with them or want you to spend time with them or let them get out of our little apartment. It’s because I need them, my heart needs them, my soul needs them. Even though they stress me out and they push me, they also keep me sane and alive. Jax is happier now, laughs more and smiles when I walk into the room. And my sweet Ian is such a nurturer and he keeps my heart full with his constant need for hugs, kisses and I love you’s. If you wonder why I’m not back to work yet, it’s because I will LITERALLY lose my mind if I add in the stress that my job creates. You may see the life I want you to see through snapchat, Facebook or Instagram and think, she’s not depressed. She’s smiling with her kids and she’s going out of state and doing these things that depressed people don’t do. Well, I will be the first to admit that I try to showcase the good so you can’t see how bad my bad really is. I try to go to my happy places or see new places with hopes that it will lead me back to myself.

I’m not as okay as I say I am. But I finally recognize it now and I’m ready to do something about it. October will begin a long journey for my mental health and I’m eager to embrace it. This was my first step at doing so. And all I want from this blog is for people to understand that I’m finally doing something about it and that I’ll be okay.

Round Two: Just Keep Swimming

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As you all know, Joey was diagnosed with Stage 2A Hodgkin’s Lymphoma in January of this year. He completed 12 infusions of ABVD chemotherapy on July 22nd. I hate to say that he did not have what they call a “complete response” to chemotherapy. Meaning, the chemo did not kill ALL of the cancer.

On June 3rd, Joey had his mid-way PET scan and it showed a “partial response”. All of the cancer that was in his chest was clear but his neck was being stubborn and still showed disease. We were hopeful that the remaining chemo infusions would kill what remained. About a week after Joey completed his last chemo, he had a CT scan of the neck and chest. We knew going into that test that it would not give the best results because of joeys severe allergy to iodine and its absence in this test. While we were at Disneyland, enjoying our first family trip since all of the madness, the oncologist called to say the CT didn’t look good “but it was hard to tell” and that we’d have to wait for the PET results and he was ordering a new biopsy as well. Way to put a damper on our day, Doc. I had to go the rest of the day pretending as if I wasn’t scared as hell and utterly heartbroken trying to imagine how Joey felt. Joey didn’t want me to tell anyone until we knew more. Not being able to talk about it was tough but I had to respect my husband’s wishes.

August 15th was Joey’s PET scan and that is the only test that I can not accompany him to. He can not be around pregnant women or small children for 8 hours after the test because of the nuclear injection they administer. So the boys and I made plans to be out of the house. The oncologist called within a few hours of the test and confirmed that the CT was correct that his neck still showed the disease and that he would be referring Joey to a Bone Marrow Transplant doctor at Kaiser Sunset. Luckily, we were scheduled to see Dr. Fong that Friday and the biopsy was set up for the following Monday so things were once again happening very fast. The only negative, he called within the time frame that I couldn’t come home. So Joey was alone when he got the call and I still had a couple hours before I could go home and be with him after hearing the news. One again, way to go Doc.

Come Friday, at the time of our office visit, Joey was already set up for the consultation in LA. So Dr. Fong went over in greater detail what he discussed with Joey over the phone. He explained that at the mid way scan the tumor shrunk and showed a diameter of 1cm and now it had grown to a diameter of 1.6 cm. It wasn’t a considerate growth, but the fact that it had increased in size is what warranted the referral for a BMT. Dr. Fong had already reviewed Joeys case with other doctors, including the Radiation Oncologist, Dr. Ang, that we met months ago. They all agreed that Joeys options were either Radiation therapy or the Autologous Bone Marrow Transplant and that they would agree and proceed with whatever the BMT Doctor recommends.

Fast forward to today, August 23rd when we took the drive to Kaiser Sunset (LAMC) to meet with Dr. Zhaou. He wants to save radiation therapy for later on in the event that the chemo does not kill all the cancer or in case he relapse’s in the future. Radiation has a lot of negative long term side affects and if we can avoid them, we should. It was an easy decision for the doctor to go forward with the transplant. Basically, after meeting with the doctor, a transplant coordinator and a social worker we were given the plan for the next 2-4 months, expectations, resources and lots of reading material. It was very overwhelming and A LOT of information was thrown at us in a short amount of time.

So here is a simplified summary of what Joey will experience in the upcoming months:

He will start what’s called Savage Chemotherapy in an inpatient setting every 21 days. He will be hospitalized for 3-4 days and receive a treatment called ICE. There are only 3 drugs involved this time compared to the 4 drugs he received in his first round. One of them will run through his IV drip for 24 hours straight. This chemo will be much more intense than the last treatment, hence the term “savage”. The fatigue, hair loss, nausea etc. will be way worse. After 2 rounds of this chemo he will do another PET scan. If that test shows the cancer is gone, he will then begin the preparation for the transplant. If it is not, he will do another 2 rounds and then another PET scan after that.
Once the cancer is gone he will do the work up for the transplant, lung test, heart tests and another round of “conditioning chemo”. I will have to administer a daily shot to him again but for two weeks straight this time. Someone pray for me, I hate giving him shots.

Then we will drive back out to LAMC where he will go through a minor procedure to have a “Hickman Line” inserted. It’s basically a long term intravenous catheter that will be inserted in a vein in his chest to help with the collection and transplant of the stem cells. And if anyone has seen Joey get an IV or a blood test, you will sigh from relief knowing he won’t have to be poked over and over again.

A couple days after the Hickman is inserted we will go to City of Hope to begin the collection of stem cells. This could take a couple days of going back and forth until they collect enough stem cells from his blood. Once they collect all that they need, Joey will be hospitalized about 2 weeks later. He will be admitted between 2-4 weeks while they transplant his stem cells right back and observe and treat him while they wait for the cells to grow back.

Sounds intense right? This is super serious and we were advised to be super careful once he begins. His immune system will be extremely low and he will be extremely vulnerable. He can’t be around animals, we have to limit where we go, be aware of who he’s around, Jax even poses a threat to him because of his age and his immunity. This will take him about 6 months to a year to fully recover, so who knows when he will be able to return to work. So now, more than ever, Joey will need support from his family and friends. This is going to be tough on him and I know that the love everyone shows him, truly lifts him up.

I knew this would be too long for a Facebook post but I know a lot of people care about Joey and would like to know where he stands. This post is meant for that reason only. To let everyone know the plan of what comes next. What he will medically go through in the next 4-6 months. How do we feel about it? That we will do whatever we have to do to get Joey healthy again. THERE IS NO OTHER ALTERNATIVE! How are we doing with all of this? Well that’s a different story for a different time. What happens next if this doesn’t work? There are other options but I pray we won’t need to go there.

Please keep Joey in your prayers because he’s the one that truly needs them!

When “cancer” Enters a Marriage

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Joey and I were married about 7 and a half months when we got the news. During that time, we experienced some minor and some major life changes. Joey got a newer, better job that really changed our lives. He was home more, made more money, spent a lot more time with Ian, it was perfect. We finally moved out completely on our own. We had spent our entire relationship living with my brother/sister in law and nephew, so the move on our own was a big change. I finally got pregnant with our second child after months of off/on trying on our own and then after only 2 months of infertility treatment. After working for my company for 10 years and in my particular department for 5 years, I was finally able to snag a full time position. Then in January we made another small move, downstairs to a bigger apartment for our growing family. Everything was going so well for us. We were growing together as a family and we were growing personally in our own careers.

When I think about the dynamic of our relationship before cancer, I feel like it takes me to a past life. When our worries were what’s for dinner or who’s going to do the laundry while the other cleans up Ian’s mess. Joey and I have always had this natural sense of communication and compromise. Yes, we would disagree and get frustrated with each other but ultimately we would get through everything by communicating. Our relationship was tested and stood its ground. We weren’t one of those couples who broke up and got back together time and time again, I don’t believe in that. Neither of us have ever stepped out of our relationship. Trust and loyalty was never a weakness of ours. But we survived other obstacles like death, depression, jumping from one stage of our relationship to the next maybe too quickly, surviving becoming parents out of wedlock, family problems, you name it. We survived it all because we respect each other and we were willing to do whatever it took for our relationship to survive.

Now, we are battling the biggest obstacle of our lives. Joey is battling stage 2 Hodgkin’s Lymphoma and I am just a passenger on this ride with him. For the past 3-4 months our lives have revolved around doctor appointments, diagnostic exams, chemotherapy, OB appointments, blood tests, medication schedules, injections, allergic reactions, ER visits and weekends away from our biggest lifeline; our son. There’s no more social lives for us, no nights out at the bar, no more Disneyland trips with our boy, there’s no fun vacations or breaks away. Life is serious, it is scary, our life is full of sickness. We spend a lot of time in silence. When Joey doesn’t feel good, he doesn’t really talk. That’s when I know I need to give him space. That’s when I have to to guess what he needs based on how he’s acting. There’s little intimacy. I have to stay away from his bodily fluids for 72 hours post chemotherapy. I can’t kiss my husband goodnight when he’s the most vulnerable. I can’t even clean up after him if he were to get sick. I can’t be the wife that I need to be for 72 hours. I don’t think you’d understand how that feels unless you were in these shoes. Cancer has gotten in the way of some the best parts of our marriage. It has changed so much.

In spite of all the negativity surrounding this situation, there have been some really amazing moments to balance out the bad. There was no scarier moment than watching nurses and doctors run Joey down to ER because he couldn’t breathe and my pregnant self running after them, pushing Ian in the stroller, following them as far as I could. But seeing his face for the first time after that was a blessing. Watching Joey fight the aftermath of chemo and then watching him come back to life the second Ian walks in the door is magical. After back to back trips to Kaiser, being treated for pneumonia, multiple sleepless nights and piggy backing of very scary medications, the moment Joeys fever finally broke for good was the third best moment of my life (behind Ian’s birth and our wedding day). Joey and I have never spent so much time together than we do now. I have never felt so in tune to him and his needs. I know him and I know his treatment and his well being like the back of my hand. I know what each facial expression or what his body language means. I have never felt so accomplished with what I can do for him. I used to get so frustrated when he would go out with the guys when I needed him home to help me, now I take it as a personal victory that he feels well enough to get out of the house.

They say that everything happens for a reason. I will never understand why certain things have had to happen in my life. God hasn’t shown me why yet. I’m hoping to understand why he chose this for Joey. To test Joey and all of his loved ones? So that Joey can see just how amazing and strong he is? Because all of us around him already know. Maybe to teach us that we need to start enjoying life together as a family more and that anything else doesn’t matter? Or to make us stand the test of faith in our marriage that we will make it through anything as long as we have each other? I don’t know why but I can not wait to know what it feels like when this is all over. I can not wait for cancer to walk away from my marriage.

I must say that this post was influenced by social media. Every day I see women complaining about their husbands/boyfriends, their families and their pregnancies. I WISH I could complain about something as simple as I see on Facebook. I wish I was having a completely normal pregnancy that I could complain about aches and pains and constant bathroom trips. I wish that Joey was pissing me off by leaving me alone with Ian because he had the health and energy to be somewhere else. I wish I could allow my family or friends to irritate me but they are the reason we are getting through this. That’s when I realized that getting frustrated over other people’s lives made me look for all the positive things that my life gives me. I don’t like to complain as it is, but this has definitely taught me to to appreciate so much more in life. I know life gets hard for everyone and we all have our own stress threshold levels. But it’s true, someone has it worse than you. And as much as I wish I could complain about how hard my life is compared to what I read online.. There are many other people whose lives cancer has affected worse than ours. Joey will survive. My boys will have their dad here to watch them grow up. I will grow old with my best friend. Not all wives and children have that final outcome with cancer. There are women who would die to be pregnant and experience all the hard that comes along with it. Although my pregnancy took an unfavorable turn and I have to start being monitored for the safety of our son, he is still in utero and not in NICU. Our life is hard but it can be worse. Someone else, somewhere else has it worse. And for that, I am blessed and motivated to not let this cancer take anything else away from my marriage but allow it continue to teach and test us. In the end, our marriage will still be alive and stronger than ever… And the cancer will die!

 

Successfully Living with Depression

I am pregnant and my husband has cancer. Never in a million years did I ever think that this would be my life. Regardless if I was pregnant or not, my husband has cancer. He’s 27 years old, we’ve been married less than a year, we have a two year old boy. Why is this happening to him? Our first year of marriage is supposed to be a fairytale and something of a honeymoon. Why did it turn into a nightmare and a major test of our vows “in sickness and in health”? Why Joey? Why now? Why does this baby have to be born into a world of stress and sickness? Why does Ian get to spend his last days as our only child with cabin fever because we can’t ever go anywhere? It’s not fair to any of us. These questions and these thoughts go through my mind every single day almost all day. It literally eats me alive.

Those that know me or have been my friend on social media know this is not my first run in with cancer. For the past 4 years or so, cancer has played a very big part in my life. Each experience different than the other, along with the hurt and struggle hitting different parts of my heart. My Nino was the first to be diagnosed with cancer. Stage 4 stomach cancer with a unfavorable life expectancy. My Grandma Carmen (aka Momo) was next, plasmacytoma which has since turned into multiple myleoma, with a high chance of survival. Then followed my Aunt Becky being diagnosed with a terminal cancer called Neuroendocrine cancer of the liver. I went through different phases with the 3 of them. I handled each diagnosis differently but it ultimately put me into a depression I don’t think I ever fully escaped from. With my Nino, I was scared and angry and made unwise lifestyle choices. I met him at chemo, I assisted with scheduling diagnostic exams in my department and I’d go visit him and watch movies when I could. I spent too much time away from him because I could not handle what cancer was doing to him. I know I hurt him with my absence but I didn’t know how else to deal. He lost his battle after 13 months. With my grandma, I went to every consult, I took her to treatment and I listened to her when she needed to talk. Something I didn’t do with my Nino that I should have. Thank God she’s still here with us. When my Aunt Becky was near the end and at her worst, I was pregnant with Ian. I took her to chemo, radiation, thoracentisis procedures, doctor appointments and I took it a step further and would spend the night with her at least twice a week. And when she died, I did not allow myself to feel or mourn her because I was trying to protect my little fetus. Once he was born I was hit hard with post partum depression and finally mourned my Aunt’s passing. Helping out and being there helped me deal and that was my new therapy while healing from these experiences. But there was one common thread with all of these.. I would go to my own home every night and sleep in my own room. I had more breaks away from them than I had “turns” in caring for them. Cancer was never a part of my every day all day life like it is now even though I often thought about them, called to check on them and imagined ways I would help them.

Now that I see every single thing that this cancer has done to my husband.. Now that cancer lives in my house and I get no break from it.. It breaks my heart thinking about how little I actually did for my Nino, for my Grandma and for my Aunt. What I did was so minimal in comparison to the love, support and care that they actually needed. Not only am I struggling with my own pain and pregnancy hormones, carrying as much of Joey’s weight as possible, trying to be the best mother I can to our son and keeping this baby inside as safe as possible, I am constantly battling myself with the idea that maybe this is what I deserve for not doing enough when I had the chance. I feel like it’s my fault that Joey is sick and he is suffering as some sort of sick karma that has come back around to me.

Joey is such a wonderful man and it is so obvious that everyone knows it. It goes without question that he means everything to his family, his siblings and all of his in laws. The impact he has had on his friends lives is amazing. He has so many people on his side rooting for him and praying for him and I know that’s what’s getting him through it. Granted the sickness is not in my body, I feel like I have a great support system. My family and my friends have shown Joey so much love and compassion since we got that dreadful call. I know that everyone handles things differently and shows their love and support in different ways. Some people do things for Joeys spirit that others can’t do. And I know from experience that it helps the other party as well. We love when Joey’s family comes over to eat with us. The company and conversations are nice because we don’t have the chance to interact with others much anymore and it’s always sad to see people leave. Joey goes bowling with his brothers and plays softball with his friends when he feels up to it or needs to get out and breathe some fresh air. He has different outlets with the different people in his life and I’m glad he’s not letting cancer take away his competitive and athletic side.

This is where I feel I may start to sound selfish. But if you truly know me, you know that I am more selfless than selfish and I hope you don’t take this wrong. Even before Joey was diagnosed, I was experiencing a tough pregnancy. As one can imagine the stress that this situation has put on me has made my pregnancy even more difficult. I am constantly in pain which means I don’t sleep well and my patience runs out a lot quicker with Ian. I have naturally taken over ALL duties of running this household and our life in general. Not only am I cooking and cleaning and doing typical wife/mom shit, I do the grocery shopping and bring in the groceries most of the time because sometimes Joey doesn’t have the energy to do it. I go put gas in our cars because it’s rare that Joey’s out of the house to do it himself. I handle the drop off or pick up of Ian when he can’t be picked up or dropped back off at home. I started administering Joey’s injections when I used to be terrified of things like that. I have hung every shelf, nailed every picture, built every piece of furniture in preparation for our baby. I watch Joey’s daily struggles and how he overcomes them. I sleep with one eye open at night because I need to make sure he makes it back from the restroom. I make sure that his medications are always in stock so he never has to go without. I hear him wince in pain at night. I’ve felt the bed shake from his body ridding itself from the chemo drugs and luckily other times I hear him finally sleeping like a baby. The cancer may not be in my body but it is very much a part of my life. I may not know exactly how it feels but it hurts me every second that I see him suffer. I usually walk away from him with tears in my eyes or sleep with my back to him and blame my runny nose on allergies. But what do I do to get some “me time” or take a breather? Not much. It’s rare that I make time or that something doesn’t interfere in order to have dinner with the handful of girls that have supported me the most. But I get scared anytime I leave Joey. Scared that something might happen when he’s home alone or with Ian. I’ve gone with Joey to sporting events even though the prolonged sitting and the seats kill my back. Do I truly enjoy myself? Not completely like I should. I’m spending most of the time just pretending I’m okay but I don’t allow myself to feel joy. In all honesty, I feel myself reliving moments I had with my other family members and I feel that sadness on top of everything I’m dealing with now.

I have the same few people who ask me what they can do to help. Of course when they are available, I had a good day and was able to accomplish cleaning, cooking and laundry in one day. So the conversation usually ends with “let me know when you need help.” Maybe it’s my pride, maybe it’s my fear of communication or maybe it’s my mind telling me that if I ask for help it means I can’t handle this. I don’t want to ask for help until I feel absolutely desperate. I haven’t gotten to that point yet, I’m guessing it will come once Jax is born. I feel like I am going to do my job as a wife and mother as long as I can while my body is able. Sometimes when I’m almost desperate, I just wish people would magically show up to help us. But I know that people can’t read my mind and I know that people have their own busy lives and I do not expect anyone to bend over backwards for us. I say this because I know from experience.

Family members call me and depending on the moment, I don’t answer. Sometimes I just don’t want to hear the sympathy in their voices. Other times it’s taking everything in me to prevent an emotional break down and just hearing “how are you” might be the very end of me. Friends text me and tell me that they are praying for us and to stay strong. Sometimes I don’t even have the words to respond because I just needed to hear that so badly that I can’t even compose a response without breaking down. Sometimes I feel like people get upset with me because I’m not communicating or participating in their lives the way they need me too. Maybe it’s all the guilt in my heart that makes me feel that way. But what they might not understand is that I’m just trying to survive the best way I can.

I started this blog as a way to help myself. Writing has always been the best outlet for me as I’m not so good with expressing how I feel any other way. I have written other pieces as time has gone on that I’m just not ready to share yet. I need to let out the way that I feel since I don’t really have time to go see a therapist. So, yes I am writing about my pain that I’m experiencing as I Fight With Joey. But, No I am not trying to take anything away from him. He is the strong one here. He’s the one that keeps me together when I feel like I’m falling apart. His strength and courage during this ordeal is what makes me want to be better. Just because I smile and laugh on the outside doesn’t mean that I’m not battling depression on the inside. And for the sake of these 3 people who depend on me, I need to be stronger for them. I know this is pretty long. If you made it to the end, I thank you for listening!

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