My First Wedding Anniversary without My Husband

As you may know, my husband passed away last May after a prolonged battle with cancer. Our wedding anniversary was on January 17, and I wrote this on Facebook to mark the occasion.

Today would have been our 8th wedding anniversary and 14 years of being together, since we were seniors in high school in 2003. It’s the first one I’m spending without you and I have to admit, it’s hit me harder than any of the other “firsts.” On this day 8 years ago, we thought we had the rest of our lives together. We thought we’d grow old and die far, far in the future. It wasn’t as far away as we’d hoped.

Today I planned on cooking a good meal that you would have liked and thinking back on our wedding day (what an awesome wedding it was!) to honor you and your memory. But, life happened. Grief has been clouding my mind, making it hard for me to sleep and keep up with life so I spent most of the day watching Henry play from the couch, and napping while he napped. Now Henry is down for the night and I have to do some chores that can’t be put off any longer. I know going on living my life is honoring you, too, because that’s what you wanted Henry and me, and everyone who loved you, to do.

This first picture is of you seeing me at our wedding for the first time. I’ll never forget how amazed you looked and how loved you made me feel. After this we went for a walk on the beach and took some pictures, then went back to the hotel and started the ceremony. I was so happy and excited to marry you that I couldn’t stop laughing throughout our vows. I’ll always remember our wedding day as one of the best days of my life. Thank you Michael for loving me so well and letting me love you, too. I miss you every day.

Henry’s First Birthday

Henry and I on his birthday. We had a Halloween costume party.

Henry and I on his birthday. We had a Halloween costume party.

Our son Henry’s first birthday was a couple of weeks ago. My late husband Michael has a huge family so we ended up having a pretty large party. I usually enjoy party planning but I have to admit, I didn’t put as much effort and joy into planning this one. It’s understandable and I’m not beating myself up about it.

I was really dreading both days, his actual birthday and his party, from a grief perspective, but both ended up being a good days. I was afraid that I would be overwhelmed by grief and feelings of loneliness and sadness, and those feelings were there, but they were manageable.

Another milestone behind us. From here on out it’s a milestone a month until May. Thanksgiving, Christmas, our anniversary, Valentines, my birthday, Easter, and then the one year anniversary of Mike’s death. Although it sounds difficult and I’m sure it will be, in some ways it won’t be much different. Every month I realize that another 30 days has gone by without my husband, I grieve for time passing. Every day takes me further and further away from a time when my husband was alive and we were happy. A time when I felt whole and hopeful.

When Michael died, I lost that hope that the future will be better. Now the future just is. I don’t know if I can be happy as a widow, without my husband by my side. But I have to try, for my son’s sake. Even though I have every reason and justification in the world to let myself live in sadness and grief, I don’t want my son to grow up with a perpetually depressed mother. Sometimes I will be sad and that’s unavoidable, maybe I will even be sad more often than other mothers, but I have to try to be happy, too. I want him to have a happy childhood despite not having a father. And the only way to do that is to be happy myself, too. So I’ll try, one day at a time.

Almost Four Months Out

Just a warning: there will be expletives ahead. I’m not apologizing because I’m an adult and I can use expletives if I want. Just fair warning if that sort of language bothers you. On with the show.

I’m almost four months out from my husband Mike’s death and it still gets me every once in a while: this feeling of utter disbelief that he’s dead and gone. I’ll be doing something mundane and it will just hit me, I can’t believe he’s fucking gone! I can’t fucking believe this is my life now! I’m never going to see his smile again, hear him say my name, hold his hand. That part of my life, the part I shared with my soulmate, is over and done.

Today my son was playing with some toys while I dozed nearby (give me a break, he woke up at 4:30am for the second day in a row). All of a sudden, I’m not sure if it was a combination sounds made by the TV, a toy and/or him, but I could have sworn I heard my husband calling my name. I jolted awake, sat bolt upright and looked around. My heart was pounding and my throat constricted. It sounded so like him but I soon realized it wasn’t, it was a combination of my drowsiness and environmental sounds that came together and tricked me; it wasn’t real.

That moment of realization, of remembering your life is missing a core element, can be very painful, especially in the beginning. In first days of my bereavement it could absolutely gut me and sometimes it still does. I wished for death more than once, not because I wanted to die, I just wanted to be wherever he was. As an agnostic this part is even more difficult. I don’t want to think that my husband just ceased to be, it’s incredibly painful to think there’s no part of him still existing somehow, somewhere. So I waver between letting myself believe his consciousness is in some kind of afterlife and facing what I believe to be the truth, that he really is just gone. Some days it’s too painful to be truthful with myself, so I believe the lie for a little while. But it never lasts.

I know this is all normal, as my therapist and multiple bereavement books tell me. But sometimes I get tired of being sad and crying; it feels like I’ve cried everyday since November 7, 2013 when the doctors told Michael and I he had cancer again after 11 years of remission. I want to move on, but at the same time I am not ready yet. I always feel this push and pull. I’m learning to be patient but it’s always a challenge.

This time last year I was heavily pregnant, just about six weeks away from delivering our first child, our son. Michael was recovering from his last surgery and we were hopeful it would be the end of cancer treatment. What a difference a year makes.

Our New Life

I’m trying to start this post but all I can think of are cliches.

When Michael had his surgery in August 2015, we were so optimistic that it would end his cancer struggle. We were so looking forward to putting cancer behind us and moving forward with our lives.

Well, we did. Just not with our Daddy with us.

But I’m jumping ahead. After his surgery, Mike was trying really hard to get back in shape and get strong enough to go back to work. But no matter what he tried, he just couldn’t get his energy level up, couldn’t get his appetite to improve. About two months after Henry was born in October, Mike went in for a check up at the hospital. They did scans and found that the cancer had come back, his fourth diagnosis. We were crushed. Doctors started him on chemotherapy and radiation but by February 2016 they took away what little hope we had left. They said there was nothing more they could do for Michael and they gave him about 4 months left. By that time the cancer has spread into his liver, spine, pelvis, spleen cavity, lungs, ribs… There was just too much and his body couldn’t take any more, and the treatments weren’t working.

2016-03-16 09.10.05Unfortunately, by that time Michael was so weak, doing any exciting trips or vacations were really out of the realm of possibility. We spent quiet days at home with our new baby, took a couple short trips to nearby Palm Springs (Mike loved sitting in the heat by the pool) and just spent quality time with family and friends.

Less than three months after getting that news, my husband Michael passed away. He died at home on May 5th, 2016 at about 3 in the afternoon on a Thursday. I cried and cried over his body, not even caring who was around or who heard me, I clutched his hands, his arms, his legs, not wanting to believe he was cold and gone. After that outburst I went curiously numb and stayed that way for days.

We held his funeral a few days later on a Monday. I didn’t cry, I just felt numb. I think part of me didn’t want to accept that it was all over, that my life with him was all over. I had been with this person for the past 13 years of my life, since I was 17 years old. I’ve never been an adult without him. I really, really thought he would survive all this cancer and we would go on with our life. It would be a hard life and he would be disabled, but we would still be together.

Our former catering company donated the food for the event and a wedding event venue we used to work with graciously allowed us to use their facility for no fee, as well as a DJ. A lot of our friends and family were there, overall it was a very nice day.

It’s been over a month since he passed away and I’ve already hit a couple of milestones: his first birthday after his passing, the first father’s day. It’s been incredibly hard. Every day I have to convince myself to keep going, to take care of our son who’s just 8 months old. I miss Mike every day and I think about him and the life we had together all the time. I have a new life now, a life I never thought I would have, a life I never wanted.

2016-02-11 14.50.02When I pictured myself having children, I never expected to be doing it alone. I don’t think most single mothers do, but I was confident Michael and I would never split up. I know that Michael didn’t want to leave us and he desperately wanted to be a father. He would have given anything to be here to help me raise our son together. He was so looking forward to all the things he would teach our son one day. But now it will be up to me, and sometimes I’m overwhelmed by the prospect.

This is our new life, for better or for worse. Henry and Mama take on the world.

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Baby Shower #2

Since Mike’s family is so large and we had quite a few friends RSVP to my mom’s shower, my mother-in-law decided to throw a shower for her side of the family. They decided to make this shower a co-ed shower, which was great since Mike hadn’t seen some of his family in a few months due to chemotherapy treatment.

Mike wore his first Daddy T-shirt some friends gave him for Father’s Day. Here’s some pictures of him being silly before cutting the cake.

One of Mike’s aunties made this fruit baby as part of the lunch display:

Michael had a good time trying on the baby’s onesies:

Thanks to Mike’s parents for hosting such a lovely shower!

Cancer Update: The Conclusion?

When we last left Mike’s cancer story, he had just started back up on chemotherapy treatment after taking a break to have surgery needed to correct the infection on his back. Michael continued his chemotherapy treatment (once a week with a break on week 3) for the next 4 months. On June 25, doctors requested scans to check on the progress of the tumors in his spleen and liver. The results were not what we were hoping for.

Basically this chemo was not really making the tumors better. It kept them from growing bigger, and allowed the spleen to return to its normal size (which reduced Mike’s pain and allowed him to eat normally) but it didn’t really make the tumors smaller at all. After all the time, pain and trouble Mike had been through doing chemotherapy, this news was really discouraging. Mike’s doctor discussed his case in conference with her colleagues to decide on the best course of action: different chemotherapy? Radiation? Surgery?

We decided that the best course of action to take moving forward would be a resection surgery to remove the cancerous tumors from Michael’s body. He would need to take the next 3-4 weeks off of chemotherapy to let his body recover and his white blood cell counts to come up before they could do a surgery. He received his last chemotherapy treatment on July 9. The surgery was scheduled for August 13 and Dr. Singh would be performing it. I was not excited at the thought of Mike undergoing a 4th surgery in under 2 years, but the hope is that once all of the lesions are removed from his body, this will complete his third cancer treatment.

On one of his many walks through the hospital during his stay.

On one of his many walks through the hospital during his stay.

On Aug 13 we arrived at the hospital for surgery. It ended up taking 6 hours and went very well. The doctor was able to remove his spleen laparoscopically, which cuts down on healing time because the incisions are much smaller. When he got to the liver, he found that instead of 4 lesions there were actually 8-9. So he made the decision to resect two entire segments of the liver (6 & 7) to eliminate all of those. Those areas would regenerate in 8-10 days. He also decided to remove the gallbladder, since it was close to the cancerous part of the liver and he wanted to ensure good margins (and we don’t need gallbladders anyway). Mike has one 8-9 in incision on the right side of his abdomen, and some small cuts where drains and scopes were inserted. Dr. Singh was confident that he removed all cancer from Mike’s body but we will wait to see the results from pathology before determining if any further treatment is needed (chemotherapy/radiation). He was put directly into ICU and, thankfully, had no bad reactions to anesthesia or pain medication this time.

On his way out after being discharged.

On his way out after being discharged.

Mike had a relatively good hospital stay this time around and was able to be discharged after only 7 days. We are now back home, resting and waiting to hear from doctors if any further treatment is necessary. If not, Mike will continue resting at home and start doing physical therapy to get his strength back. After over 6 months of chemotherapy and 2 surgeries, his body is not exactly in fighting form. He needs help working on building up his stamina so he can walk and stand for more than a couple minutes at a time without losing his breath. He also is still having trouble holding his head up on his own.

As of this writing, I am 33 weeks pregnant and we are staring down the barrel into imminent parenthood. Mike is completely excited and cannot wait to be a father. He is very motivated to get his strength back so he can help me take care of the little one. I have to admit, I wouldn’t mind that either! Thanks for reading!

22 weeks

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It’s a little bit difficult to take bump pictures of one’s self, but I tried! Here I am at 22 weeks along. We found out that we are having a baby boy and he’s already started kicking around in my belly! I’ve started planning his nursery, it’s going to be a rustic woodland theme. I got the idea after seeing Bonnie Christine’s Hello Bear collection, I am absolutely in love with it!

Hello, Bear!

Hello, Bear!

I’ve ordered fabric to make crib sheets, diaper pad covers and a quilt. I think I need some more fabric but I need to decide what quilt pattern I’m going to do with it before I decide to buy more!

It’s such an exciting time for us, but we are still having to make weekly trips to the hospital for Michael’s cancer treatment. I had hoped we would be farther along in treatment by now, but infections have prevented Michael from making regular progress; he has had to take chemo breaks to let his body fight infections. We’re trying to stay positive though. For more information on Mike’s cancer, read the cancer tag.

Since I’m blocked on the baby’s quilt, I started on another project in the meantime. Here is a work in progress shot:

It is a LOT of applique, but I am looking forward to the challenge!

Big News…

First ultrasoundWell, in the midst of all this big news with Michael’s health (could anything be bigger?) Mike and I received some great news. We’re expecting a baby!

Our journey to get to this point in our marriage has been a long one. When Michael and I first began dating 13 years ago (when we were 17 and 18) we both wanted to have a family and have children. As I matured, went to college and had new experiences, I began feeling like children were something I didn’t want. I wanted to be able to travel, focus on myself and my interests and not have to put someone else’s needs first. I wanted to be selfish and I felt like I was doing the right thing by recognizing that and not bringing a child into the world. Mike continued to want children and hoped I would change my mind one day.

After Mike’s first cancer treatment in 2001-2002, he began participating in survivorship clinics at City of Hope and did so until his second cancer diagnosis in 2013. They were great because it was essentially free healthcare for participating in studies analyzing his remission and recovery. One of these studies measured his sperm count; for a cancer survivor it was great, but for a regular person they weren’t good. We figured if we did ever decide to get pregnant, it would probably be difficult but not impossible.

Fast forward to January 2015. When we were told that Mike would not be having a simple laprascopic surgery but would have to undergo chemotherapy treatment again, we knew that if we ever wanted to have children this may make things even more difficult, maybe even impossible if Mike did not survive treatment. Here is an article that discusses male fertility and cancer treatment.

I had a difficult decision to make with no time to make it in. I was sitting in the doctor’s office after doctors told us Mike had to undergo chemotherapy again and I asked myself: was I OK with the possibility of never having Mike’s children?

To my surprise, the answer immediately came: No. If there was anything I could do to avoid that fate, anything I could do to make Mike’s life happier for however much longer he has on this earth, I was going to do it. I realized that the biggest regrets in my life were the things I was too scared to do. I’m not one of those people that says I never regret things I’ve done (St. Patty’s day 2006 comes to mind), but the ones that stick out the most are the things I was too afraid to try because I thought I might fail. I didn’t want to look back in ten years and realize I never started this journey because I was too scared to try.

We had approximately ten days between the day we received the news and the day he would need to start chemotherapy to try. I have never been good about keeping track of my cycle as it has always been regular, so I had no idea if I was ovulating or if this was the right time or what. It didn’t occur to me to buy one of those ovulation kits. We just tried. We figured if it works, then great. If not, at least we’ll know we tried.

Positive result!Two weeks later on Feb 6th I took an early predictor pregnancy test. Since I didn’t keep track of my cycle, I figured I was either a week late for my period or it should be arriving any day. To my surprise, the test was positive! Mike was ecstatic. I started researching local OBGYNs (I wasn’t in love with my current doctor and figured now was as good a time as any to switch).

As of today I am 13 weeks along and just starting the second trimester. Doctor says I will be able to find out the sex in 5-6 weeks! I had some pretty bad fatigue and nausea (morning sickness–but all the time!!) the first trimester, but I’m starting to feel more like my old self these days… except a little thicker in the waist! 🙂

I know for many this would be considered the worst time to embark on this adventure. Sometimes I have wondered what I’ve gotten myself into! But Mike and I have come to terms with the fact that cancer may be a permanent part of our lives now. We can’t keep postponing our lives until Mike feels better or until the cancer is over… that may never happen. We have to do as much as we can now, everyday. At the end at least I can look back and say that I did everything I could, and if I can do that then I think I won’t have any regrets, no matter the outcome of Mike’s treatment. This pregnancy keeps us staying positive and gives us something happy to think about and look forward to. Mike is so excited about being a dad he can hardly stand it.

Watching and feeling my body go through these pregnancy changes has been amazing and overwhelming. I’m constantly amazed at my body’s ability not only to grow this little person from nothing, with me not needing to do much other than try not to poison it (goodbye, alcohol and sushi!). It’s such a stark contrast to my husband, whose body has to fight every second of every day just to keep his one life going. It’s been a humbling experience and I can only imagine it will be more profound as the pregnancy progresses. But we are looking forward to Oct 14th (my current due date) when we can meet our lil’ peanut!

Cancer: Again

Been a long time since I’ve updated and I’m sure no one reads this but me, but even so it’s good for me to write it all down. When we last left Mike’s cancer story, he was recovering from surgery and radiation therapy administered after doctors found another tumor on his back. This was his second cancer diagnosis. Doctors determined the cancer was a radiation-induced sarcoma; basically, his cancer was caused by the radiation treatment he had received for his synovial sarcoma diagnosis back in 2001-2002. It’s extremely rare, although becoming more common as cancer survivors live longer lives after surviving cancer. Here is a great article about it.

In September 2014 we went to City of Hope for a checkup with Michael’s doctors. At that time they did MRI scans and saw something in his spleen but decided to monitor it for the time being. Otherwise they were very happy with his progress. Michael and I were doing very well. In July 2014 we sold our catering company and Mike continued on as the executive chef. The new parent company took over all administrative duties, thereby dissolving my position and my involvement in the company (which I am very happy for).

On December 2, 2014 we returned to City of Hope for his 3 month checkup. Scans revealed the “something” in his spleen had grown significantly in size. Biopsy was ordered for December 15, 2014 and we received results in early Jan 2015: it was cancerous. Unfortunately, the biopsy results were inconclusive as to the type of cancer it was. It could be a re occurrence of the synovial sarcoma he had in 2001, unlikely as it is extremely rare for a re occurrence of that cancer to appear in an organ. It could be a metastatic cancer spread from his diagnosis in 2013. Or it could be a third, completely new type of cancer.

As the spleen is not an organ vital to living, the decision was made for Mike to undergo laparoscopic surgery to have his spleen removed and then from there to decide whether further treatment would be required. Unfortunately, during his pre-surgery scans four additional lesions were discovered in his liver. Surgery was postponed and Michael began chemotherapy treatment to hopefully eliminate the lesions in his liver (as well as any other tumors not detected by scans) and reduce the size of the tumor in his spleen. Without treatment, Mike was given 3-4 months to live and treatment was given a 30-40% success rate.

Michael began chemotherapy on January 26, 2015. It is a once a week outpatient treatment with a 3 week cycle. On day 1, he receives gemcitabine. On day 8, he returns to hospital and receives a dose of gemcitabine followed by a dose of taxotere. On day 9 he receives a Neulasta shot to help support his immune system and help his body produce white blood cells. On day 14 he has a checkup with doctors (no chemo) and then the process starts again the next week.

The first treatment Mike received caused him to have an allergic reaction and he broke out in hives. We administered steroids, which caused steroid acne, and he recovered. After his second treatment he almost lost the entire use of his legs. He could not walk without assistance for 3-4 days. He also began experiencing tingling in his hands. By the third treatment he was losing a lot of hair, we ended up shaving his whole head (beard and hair).

When we arrived at the hospital for his fourth treatment on February 23, doctors noticed his back was very swollen and some open sores had yellow pus. Turns out Mike had developed an infection around the hardware on his back from his surgery in 2013. He was immediately admitted into the hospital and chemotherapy was put on hold. That Thursday Mike underwent surgery on his back (yet again) so doctors could correct the infection and chemotherapy could continue. It was determined that after receiving radiation treatment in the Spring of 2014, the muscle and skin the plastic surgeons had placed over the hardware had deteriorated so much that the bolts in Mike’s spine were puncturing the skin.

2015-02-26 08.26.13-1 Michael was very excited about this surgery, he had been complaining to his doctors for months that the bolts on his back were very uncomfortable and he was looking forward to the problem being corrected and being more comfortable in the future. Doctors cleaned out the infection, drilled his bolts a further 12-15mm into his spine to prevent further protrusion, and a new muscle flap was placed over the hardware. Doctors expected to need to do another skin flap or skin graft over the site as irradiated skin does not typically heal up again, but Mike’s skin reacted well enough that neither of these procedures were necessary. Surgery was just 8 hours long and Mike was in the hospital for 10 days, longer than anticipated but he had problems with pain management and fevers.

Once Mike returned home we had to continue administering antibiotics intravenously every 8 hours for 30 days (these were cefepime and cubicin). Luckily, since Mike had a portacath installed for chemotherapy, nurses could install an access needle with a short line. All we had to do was push the antibiotics in with a syringe.

Recovery was not all smooth sailing, unfortunately. When we went home his back was leaking a lot of fluid from a portion of his incision that had come open. Doctors installed a catheter with a bulb drain and stitched up the incision. Eventually Mike was draining over 400ML a day and doctors determined it was likely spinal fluid leaking, which caused Michael terrible headaches and nausea. Since so much work had just been done around his spine, it was likely a small tear formed in his spinal membrane which was leaking spinal fluid. The drain was (blessedly) removed and Michael began to feel much better. Our bodies produce more spinal fluid everyday so once it stopped draining, Mike’s body could catch up. Doctors were concerned a seroma would form, which could run the risk of becoming infected again but there is not much that can be done to prevent it.

Finally, on March 26th Michael was given the OK to start chemotherapy again! He has completed one cycle so far. We expect to continue for at least 3-4 months or until scans show no lesions in Mike’s liver. The tumor on his spleen was quite large so I am expecting he will undergo a splenectomy once doctors finish chemotherapy treatment. Mike is ready to get this chapter behind him as we have something big to get ready for… (to be continued)

The Recovery Post.

This is a continuation of Mike’s cancer story. Read parts 1 and 2 here and here.

Mike and our dog, Jetty, relaxing on his hospital bed.

Mike and our dog, Jetty, relaxing on his hospital bed.

On January 14, after 27 days in the hospital, Michael was finally released to go home. We had a hospital bed set up in our living room at home for him to watch TV. Once his back started healing, he was able to lay on it as well as his left side, to give the right side of his body some relief. He had been laying on his right side exclusively since the surgery a month before. We were both extremely happy to be home!

Michael starting seeing a physical therapist to start building up his strength again. His left arm and neck were affected by all of the muscle removed in surgery, but the rest of his body was weak, too from all of the time spent in bed in the hospital. He progressed quickly though and was ready to get back to normal. We had lots of friends and family come by to visit and cheer us up.

2014-03-19 13.56.16-2Unfortunately, the doctors were not able to remove as wide a margin around the cancer as they would have liked. It was decided that although radiation treatment was what caused this cancer, Mike would have to undergo radiation treatment again. If he did not, the likelihood of it returning would be greater and the treatment options would be limited.

Michael and his brother, Greg

Michael and his brother, Greg at the fundraiser.

On Mar 6, we went to the hospital for Michael’s first radiation treatment. It was the first day of daily treatments that would continue for the next six weeks. Unfortunately, the machine broke down and he was unable to receive treatment that day. He did receive treatment the next day and we went home for the weekend. That weekend, a local winery we work with hosted a fundraiser party for Mike’s treatment. So many people have helped us get through this time, and we are so grateful!

The next six weeks found us following a strange routine: Mondays we would pack up and drive to City of Hope and check in to our room at Hope Village, where we would stay for the week while Mike received his daily radiation treatments. I would stay with Mike Monday through Wednesday, then I would drive home to go to work Thurs-Sun. One of Mike’s parents or one of his aunts usually came to stay with him Thursday and Friday.

Unfortunately, the radiation treatment was really tough on Mike. His esophagus and throat became raw and sore, making eating a painful process. His stomach was upset and nauseous a good portion of the time. As a result he lost a lot of weight during treatment. The treatment itself takes 500 calories each time, so in order to just maintain his weight, he would need to ingest 2500 calories a day. Some days we were lucky if we could get him to keep 1500 calories down. He drank a lot of protein shakes during his treatment, since protein was also essential for continued healing.

Here are some picures I took during our stay at City of Hope:

They gave Mike a medal for completing radiation treatment. My hero!

They gave Mike a medal for completing radiation treatment. My hero!

April 17th was Mike’s last day of radiation treatment and we were able to go home to stay, finally! Unfortunately during treatment, Mike’s skin graft on his back opened up a lot so the healing he did prior to radiation was reversed somewhat. Now it’s been about 4 weeks since Mike completed treatment and the healing on his back is almost completely done. There is just a small area that is still open, but otherwise looks great.

We are on the tail end of this thing and we couldn’t be happier. I am so grateful to all the doctors, nurses, PCAs and other staff that helped us during Mike’s treatment. It was so incredibly difficult, but we tried to take it just one day at a time and we got through it. Mike has started driving again and we’re both looking forward to getting back to the things we love doing!