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 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.

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!

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.

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)

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

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.

Unfortunately, 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.

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:

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!

This is a continuation of Mike’s cancer story. Read the first part here.

On December 18th, 2013 Mike went in for surgery to remove the cancer on his back. Since we were expecting to be in the hospital for Christmas, we celebrated with our friends and family early. The night before surgery we went and had a really nice dinner at The Bazaar in Beverly Hills (I’ll make a separate post about that later).

His surgery took 21 hours, although it went long, it went smoothly and there were no complications. He didn’t even require a blood transfusion during the surgery. By the time I was allowed to see him it was 5AM and I had been awake for over 24 hours. Unfortunately, there was a breakdown in communication between the surgery team and the ICU staff, who had laid him on his back when he was not supposed to be. This caused his flap to become congested (the blood not to flow out) and the plastic surgeons started a leech therapy regimen on him to prevent necrosis of the flap (this is a great article explaining the process).

Seeing Mike come out of surgery was a scary and sobering experience. He had goggles on his eyes to keep them protected during surgery, a breathing tube down his throat and a forced air warming “blanket” (like this) on him to bring up his body temperature. I couldn’t talk with him, touch him, I had no idea how to help him. All I could do was be his advocate in an impersonal hospital system, and that was a full-time job.

Mike was in ICU for the next 20 days. On December 24, 2013 Christmas Eve, they took him off sedation and removed the breathing tube. He was very sore and in a lot of pain, which they treated with Dilaudid. Unfortunately, that pain medication gave him hallucinations and nightmares so we changed to OxyContin.

Unfortunately, Mike’s flap took much longer to heal than the doctors anticipated. They kept him on leech therapy until Jan 9th, 2014. Fortunately he was able to move out of ICU on Jan 7th. On Jan 14th we got the OK to go home after 27 days in the hospital.

I’m truly, truly grateful to City of Hope and all of our doctors and nurses there for saving Michael’s life and helping him to recover. I don’t know that any other hospital or any other team could have done it. But that doesn’t mean it was all smooth sailing. When Michael’s hallucinations were so severe, he told me he’d rather be in pain than continue taking Dilaudid to manage it, I was the one who had to fight his doctors to make his wishes known. When nurses didn’t monitor the leeches properly and they ended up crawling all over his body while he was sedated, I was the one that had to reprimand them and demand new nursing staff. When, after almost 3 weeks in the hospital, the plastic surgery team told my husband that they wouldn’t be changing his treatment regimen over the weekend because they “had the weekend off,” it was me that had to complain to hospital administration about the callous way they treated us.

For the most part hospital staff tries hard to help the patients and make them comfortable, and help them get out of the hospital as soon as possible. For the most part they are very compassionate people and do their best to listen to your concerns. But sometimes you have to be forceful to get your concerns heard and that was very, very hard for me to do.

By day 14 in the hospital, I was emotionally and physically drained. We missed spending Christmas with our friends and family. The cafeteria closed early that day, even though it was advertised that it would be open until 1:30PM, so my Christmas dinner ended up being a sandwich from the bistro. We missed celebrating New Year’s Eve. Our 5 year wedding anniversary was just 6 days after we were released from the hospital, but there was no special dinner out or even exchange of presents. Every cent we have is spent on gas traveling to and from the hospital (which is over 70mi from our home), paying hospital and doctor co-pays, paying for motel rooms for me and food (hospital food isn’t so great), etc etc.

It’s been hard, by far the hardest thing I’ve ever had to do. Not only was I having to take care of my husband, I had to keep our catering company afloat. Luckily January and February is a slow time of year for us and we have a great management team to help pick up the slack. I’ve been so thankful to them for all of their help as well as our family and friends, who have been there for us every step of the way. We couldn’t have come this far without them.

And now we start the slow process of recovery. (To be continued)

I didn’t know how to start this post. I sat down, Googled inspirational quotes that felt hollow. I guess the only place to start is at the beginning.

On September 9, 2001, when my husband was just 17 years old, he was diagnosed with a rare form of cancer called Synovial Sarcoma. It’s a cancer that attacks soft tissues, usually in joints. Mike’s was in his left shoulder. He missed his entire Junior year of high school completing treatment, which included two resections (surgeries to remove cancerous mass), chemotherapy and radiation at City of Hope in Duarte, CA. He completed treatment in the spring of 2002 and was able to return to school that fall, which is when we met.

He was cancer free for over ten years. Then, this past fall, his cancer site would occasionally sting and his seroma (which had been on his back since his surgery in 2001) began to change shape. On Oct 22nd, 2013 Mike went in to City of Hope for a check up. His doctors did an MRI scan and saw a suspicious mass. They scheduled a biopsy for Nov 4 and during our post-op appointment on Nov 7, they confirmed what we hoped it wouldn’t be: Michael had cancer again.

Michael was scheduled for extensive surgery on December 18th to remove the cancer from his back. This surgery involved shaving off a small portion of his spine where the tail of the tumor is, inserting two rods and twelve screws into his spine to stabilize it, removing half his scapula, removing three of his ribs and replacing with a fabric mesh. They also removed some of the muscle on the left side of his neck where the cancer had spread. Once all of that was removed, they moved his Latissimus Dorsi Muscle up and across his back to cover the bone and new hardware. They also took a flap of skin from his lower back and transplanted it to cover his spine. The rest of the skin was made using a skin graft from the back of his left thigh. Here is an illustration I did of his back for friends and family that helps you get a visual.

Four surgeons from four different departments worked on him. A neurosurgeon worked on his spine, a plastic surgeon took care of the muscle moving, flap and skin graft; a thoracic surgeon to work on removing the ribs and the orthopedic surgeon resected the tumor itself. During our pre-surgery appointments we were told that Mike would be in the hospital 10-14 days. If only that was the case…

This post is already pretty long so I will finish up another time. I will say though that surgery went well and Mike is making a full recovery.