surgery breeds surgery

Yesterday in the holding room before Diego’s surgery I was chatting with the nurse who would assist in the procedure, lamenting that this would be Diego’s third surgery in three months and the nurse replied, “Surgery breeds surgery.”

**Note to all medical staff: this is not information that you should tell a mother before her child goes into surgery, or at any point before or after a child’s surgery. In fact, this is something you should maybe only bring up at a cocktail party while making conversation or perhaps before an elective procedure. This is not something to say to a mother of a three year old cancer patient, who has enough to worry about.**

So, that started off the evening. From my experience here at Kaiser, the pediatric surgeons have no bedside manner. This may be true of surgeons in general, but neither surgeon who has operated on Diego here has instilled me with a high level of confidence that he is the best person for the job. I have found some solace that the pediatric surgeons are all “on loan” from Oakland’s Children’s Hospital, but compared to our experience with the surgeons at UCSF they have come up short. Before surgery I had only spoken to the surgeon by phone. He was heavily accented so I felt the best place to talk would be in person. Prior to the procedure I asked him about risks, and he spoke about the risk of finding dead tissue requiring removal and resection the bowel as being most high risk. Not necessarily the resection but the 50% odds that the bowel would not repair after resection.

So, post surgery when he told me that he did not have to resect the bowel, I was relieved. But, when he told me that he found “a lot” of abdominal adhesions which put him at a 30% risk of another bowel obstruction, I was not pleased. I had not been warned about this. The adhesions were apparently caused by radiation and surgery. And when I started to ask the surgeon questions about Diego’s long term prognosis, would he have gastrointestinal issue for life, etc and he told me not to worry. Okay, this made me laugh out loud, I told him “You’re telling a mother not to worry…this is impossible.”

Since then I have been researching therapy for abdominal adhesions. While Western medicine does not seem to address it, some information is available about massage/physical therapy, so I may look into that. I’m not sure if my level of concern is appropriate to the increased risk, but I am really unsettled by this. I need to keep remembering that the odds are that he will be okay.

One day post-op, he is doing well. When I came into see him last night in PICU he was sleeping peacefully. He looked great- good color, calm, and at rest. His surgery had been pushed up a few hours so it was only about 10pm. I opened up the cot and went right to sleep. Sometime later I awoke from a deep sleep with Diego’s crying, and I jumped out of the cot. “It’s the wrong bed!” he wailed. (They had put him in a crib, and he was incensed! He is, of course, a big boy after all!)

He was transferred this afternoon to the floor and slept much of the day. His pain controlled with morphine once again, albeit in smaller amounts. Right now he is lying in bed watching a Curious George video, narrating it for me and asking me questions. It’s wonderful to have him so alert so soon. So far, the recovery is so much faster than the last couple of times. So, perhaps things will really be okay.

all clear

Diego just made it out of surgery without too many complications. I’m going to go to the PICU shortly to give that fuzzy little head a little kiss. Details to come….

more surgery

CT results are back, and Diego needs surgery. His intestines are kinked, which his doctor attributes to complications with radiation. Sigh… This does not appear to be a surgery which is as high risk as his last one, but of course, all surgery carries risk. As I understand it, in surgery they will untangle his intestines and place them back, and if necessary remove damaged tissue and resect. Diego’s oncologist does not feel that it is likely that the surgeon will need to remove tissue as this was caught relatively early. I only spoke with the surgeon very briefly, so I don’t have much information, but I am told by staff he will go into surgery between midnight and 2am and will last a couple of hours. Recovery in the hospital for about a week, perhaps more.

Amazing how quickly things change… Diego was doing so well over the past week, and me thinking we were going to just coast to the finish line.

déja vu all over again

It’s 1:30 AM and here we are, waiting in the emergency room once again, in the exact same room where Diego was lying when his tumor was discovered.

Tonight he had severe pain in his abdomen on his right side and his doctor advised us to come into the ER about 3 hours ago. The nurse has told me that Diego will be admitted upstairs, and we still don’t know why. X-rays were taken, blood was drawn and I was told about an hour ago that the doctors would come in to let me know what is going on. The doctors said that his pain is in the area of his appendix, but I am worried. Very worried…
……………………………………………………………………..

Afternoon Update: In case it wasn’t clear, I was worried about his remaining kidney on the right side. This morning’s ultrasound revealed that his right kidney is okay, but he has some inflammation and fluid in his intestinal area. If he continues to have abdominal pain and vomiting they will do another CT scan. For now, we’re inpatient at Kaiser Oakland until he is able to hold food down. I feel a small bit of relief that the cancer has apparently not spread to the other kidney, but i feel it’s too soon for me to let my guard down.

3 down, 4 to go

Friday was a landmark for us, 3 months since this all began. All things considered, that seems like a very short period of time- one month of hospital hell and two months back home. With radiation over and chemo going to every third week it feels like the home stretch, but with 4 more months of treatment we are not even half over. At least, we can safely say (or hope) that the worst of it is behind us now.

Since this began, I’ve tried to not let it take over my life. Even at the hospital I tried to put myself together and put on makeup and to not let this thing eat me alive, to be strong. Of course, often times it has been impossible to not get pulled into the abyss of worry and fear. I keep pushing it back, I don’t feel it is productive to go there. Losing my father to cancer when I was eight taught me that no matter what, life does go on. To a certain extent, we have the power to shape our view of the world. I often hope that I am doing the right thing for Diego by going back to work and keeping things moving instead of dedicating myself to learning more about the disease or engaging with the cancer support community. I’ll be honest, there are a lot of really heartbreaking stories out there and my heart can’t take reading them over and over again. At least, not right now. Perhaps it’s a form of cocooning, or sheltering myself from the harsh realities of what could happen. Perhaps it’s my own way of telling cancer to “suck it”- you took my dad from me, you will not take my son or define my life. I guess I’m just doing what I need to do to stay strong for my son.

clinic

The Pediatric Hemotology-Oncology Clinic takes up the entire 14th floor in Pediatrics Building and that is where we have been going for weekly chemotherapy. On our most recent visit I realized that I actually looked forward to Diego’s visits there. The clinic is spacious and quiet, and they know everyone’s name. Once we walk through the double doors I feel like I can relax. The families there are all dealing with similar issues, and there is something really calming about being with people with shared experiences. The nursing staff there is great and will help with every need for the family while we are there. Really, it’s what you would want under the circumstances. Our experiences with Kaiser in the past have been somewhat mediocre, so I am incredibly thankful that Diego is receiving such good care during treatment.

Tuesday was Diego’s last weekly chemo visit…hooray! From here on out he will have chemo every third week. With a break from chemo he should start getting getting more of his appetite back and maybe we can finally take out the dreaded NG tube. He had not lost weight over the past week, so I consider that a victory.

I’ll need to do twice weekly blood draws from the Broviac for a while. He is at risk of becoming neutropenic, or severely immuno-compromized right now. His last blood draw revealed that he is anemic, and may need another blood transfusion. Again, this is a common side effect. I don’t know whether that means he’ll have to be admitted to the hospital. I sure hope not, he is terrified of that place.

Once again, we have pulled out of our plans to move. We had been gung ho about an REO Eichler home which had motivated us to sell once again, but with the real estate market in the area taking a nose dive in the past month, we don’t want to sell in this period of uncertainty. We’re refinancing, which should help with monthly expenses but we’re still holding out that we may be in the position to make an offer on our dream home. But in all likelyhood, we’ll be here for a while.

little moments

I’ve been thinking a lot lately about how this experience has changed my perspective and our lives and, at times, how it has not. There are times that I want to forget what we are going through and pretend that life is back to normal. Some days it feels back to normal– We work, cook, clean and make plans for the future. Sometimes when I get caught up in my own world I feel somewhat guilty for momentarily forgetting what Diego is going through. Then I step back and think, “Well isn’t this what we are supposed to do– to go on living?” 

Then there are the times when it feels like little moments carry so much more importance. 

Today we met some friends at the Temescal Farmer’s Market and I brought my camera. While I used to be self-conscious about taking photos, now I am not. I went through 4 years of college with only about 10 photos of little moments and friends because somehow it always felt tacky to break out the point-and-shoot. With Diego’s illness, these little moments carry so much weight. When I see Diego smiling and laughing it is so reassuring that he is still here, and still himself. I want to hold onto these happy times, feel them and imprint them. 

Somewhere not too far in the back of my mind I am always reminded that this time we have together is precious. His prognosis is “very good” but he is not yet done with treatment, and will be at increased risk for cancer and other health issues for the rest of his life. We will never really be completely “done” with this. The risk is “low”, but it’s unclear to me what that means. Once we finally finish treatment he will be monitored quite closely, possibly for the rest of his life.

When we are out and about, I always have him wear a hat. It protects his little head from sunburn, but it’s a layer of protection in more ways than one. Even with the feeding tube, with the hat he mostly seems like a normal healthy little boy and doesn’t attract too much attention. When he takes off his hat in public my impulse is always to cover him up, and protect him somehow, but I never ask him to put on his hat back on. I don’t want to make him feel ashamed or embarrassed, and so far he is not. But today at the market I watched a small crowd of children come up to him and start staring. I rushed to Diego’s side with a big smile on my face as one of the boys asked “What’s that on your face?” Diego smiled and started to summarize “Andrew’s Story” , the book we have about the little boy with Wilms Tumor who beat cancer. Phrases came out of Diego’s smiling face in a rather jumbled mess, “Diego had a lump that was taken out. It was cancer and I have chemo and a central line.” or something like that. I elaborated, “The tube is for medicine. Diego was very sick and he is getting better. Are you feeling better Diego?” Yes, he said and added, “Diego gets milkshakes in the NG tube.” The inquisitive boy shrugged it off with an “Oh, okay.”  and walked off.

watch and weight

Radiation ended abruptly and three days early last week. We showed up on Thursday and were told it was Diego’s last day, no explanation beyond “the prescription was only written for 7 days”. We asked to get a call from the radiologist who designed the treatment, and still haven’t heard back from her. We can only surmise that, for some reason, they decided to modify the course. I do hope we get a call back eventually.

Today was Diego’s weekly chemo appointment, with weigh-in. While radiation ended last Thursday, the side effects have not. We are not able to give him as much through his feeding tube or it will just come back up. We have been subject to nearly daily projectile vomiting and, of course, no appetite whatsoever. So, I was surprised to find out he had only lost a few ounces. I’m guessing that he would have shown more of a loss if it weren’t for his full bladder. I asked the nurses how long the nausea would last, and they told me it could be a while after the treatment. I asked if they could be more specific and they told me it varied by patient. Great… Also, Diego has a radiation tan on his abdomen. This is apparently also normal. Beyond that I haven’t noticed any other side effects. I didn’t ask how long his tan would last, I figured that was the least of our worries.

We are getting cold feet on our move. It seems sales prices have dropped dramatically since we were planning our move in May. We need to recalculate whether it is the right choice for us now. I’ll admit, I do feel a high level of frustration that we weren’t able to move as planned. Is it selfish to think of missed opportunities at a time like now? I guess it feels a bit so. Who knows how long it will take for the economy to recover. And, in case you were wondering, I haven’t really worked since Diego got sick. That’s close to three months, if you are counting and I’m not sure how we are going to get back on track. I suppose it’s pretty normal once your loved one is out of immediate danger that you have to start doing damage control.

As one would expect, I’ve been doing a lot of soul searching over the past few months. An optimist, I try to find the silver lining in things. I’ll admit, I’m coming up a bit short on this one. Above all, we are learning to live in the present more, and cherishing the moments that we have with our loved ones. And that has really elevated my perspective. I do feel really much more present for my children now. And I tell myself things could be worse, a lot worse. But really, that is cold comfort isn’t it? Doesn’t everyone want it all? Certainly in this culture we do. It seems we have a sense of entitlement that we “deserve” to have it all. I tell myself there must certainly be a message here, and we will find it, learn from it move on and become stronger. At least that is the hope…but a certain part of me feels that sometimes things that just happen are bum luck.

down

We’re into week two of radiation, today at the half way point. At Tuesday’s appointment Diego had lost almost a kilo. I had hoped that he would maintain his weight, but it seems that between the vomiting, loss of appetite and inability to tolerate much of the NG feed we lost the battle this week. 

Tuesday was tough, another long day with radiation at chemo. He vomited in the car on the way to radiation, in the car after radiation a couple of times, in line at the doctor’s office before chemo, while waiting for the doctor, and then  a couple of times back at home. I lost count. He didn’t even have any food in his stomach. Apparently the effects of radiation can be cumulative and may continue a few weeks after, so this is going to last for a while. He is tired, whiney, and cranky– and he is not the only one. Hopefully we can get a little better control of things with the anti-nasea medicine. Today I am trying a low dose of NG feeds all day in order to try to get him the calories he needs. Here’s hoping…

I knew this was going to be a tough few weeks. And I know it often happens, but as time goes on support tends to wane even when you may be most in need. Once we get through this rough patch it should start to get easier again. Over the weekend I discovered that my weight had fallen below 100 pounds for the first time since high school. I don’t know how this is possible, but apparently having a kid with cancer is a great way to trim down. I find myself wishing we were connected to the community more. When crises like this happen, I would imagine it would be great to have a large support network. But we’re really thankful to the people who have been so supportive of us and have really taken a lead. It is difficult to ask repeatedly for support, and it’s really not our style…we can make due. 

I may be regretting the decision to go forward with our move a bit today, but in the end I know it will be the right decision. We’ll be out by August 1st and in a temporary apartment in the suburb of Walnut Creek. With luck our house will sell soon and for a good price and we’ll be able to make an offer on a bank owned mid-century modern home that we fell in love with. Diego will be finished with radiation  before then and down to chemo every 3rd week  so life should be a little more back to “normal” then.

radiation

So we have wrapped up the first in 2 and a half weeks of fairly intense treatment. Chemo on Tuesdays, followed by radiation Tuesdays-Fridays and then Monday-Tuesday, 10 treatments in all. Diego is getting chemotherapy at the Pediatric Hemotology-Oncology clinic at Kaiser Oakland, and radiation at UCSF hospital.

Diego has been a great mood this week, at clinic we found he had gained another pound! I really think that getting his weight back has been the biggest contributing factor to his sunny disposition. Tuesday was a long day however, first the hour or so for chemo in Oakland, and then across the bridge to San Francisco for radiation. He felt excited about the journey to the City, pointing out the sights and sounds as we drove on the freeway and over surface streets.

The Zap Button
But, once in the room with the machines he got very scared. I’ll admit, while it was an understandable reaction, I was rather perplexed. Just the week before we had been to UCSF for a CT scan for the planning of his radiation treatment, and he did great. He has probably had about 4 CT scans at this point and knows what to expect. I was able to leave his side this time and he was able to lay totally still for them to do the scan. Granted, I was behind glass in the control room but he actually had smile on his face. We have talked a lot at home about the “giant donut” and the “wah, wah, wah” noise that it made. So, the doctors were confident that Diego would be able to get though radiation without sedation.

The week before radiation we had gone to the room, he had laid down on the bed and we talked about the sounds the machine would make and generally did our best to make him comfortable with the process. We talked about it i lot n the week leading up to the session and I even explained how radiation would “zap the cancer right out of him” for assurance.

All in all, it probably took over an hour of coaxing to get him on the table. Kudos to the staff at UCSF for their patience. I was close to giving up when I realized that my “zapping” comment had scared him. So I turned to the technician and said, “Let’s make sure the zap button is turned off, okay? Diego doesn’t want it.” It took the tech a minute, but then he understood and we proceeded to make sure everyone knew that Diego wanted the “zap” button turned off. I went in the control room with the team and they closed the door and I counted slowly to ten while Diego was still on the table. Ha, it finally worked!
On our way out he got a toy from the prize box and was happy. He fell asleep in the car on the way home and slept for several hours. When he woke up he generally felt good, but ended up vomiting when he had too much juice. (Among some other things, one side effect of radiation is nausea and vomiting.) The NG feed overnight was a little tricky, I was terrified that he would end up vomiting in the middle of the night with the formula going into the NG. I got up at 3:30 am to give him his next dose of anti-nasea medicine and he seemed okay. I did cut back a bit on the feeding though.

LIke Night and Day
The next day at radiation, Diego was excited and got right down to business on the table. The therapy itself takes seconds so we were in and out in no time. One of the technicians asked “Is that the same kid?” It was amazing. All it took was reassuring him that the zap button was turned off! He got a toy and we got back in the car to drive home. On our way home, I realized that he was due for more anti-nausea medication, and that I didn’t bring a full set of clean clothes. And, as fate would have it, he threw up violently in the car just as we reached Market Street to get on the freeway. I managed to stop the car and do my best to clean up the mess. After some crying, he fell asleep in the car and slept at home for a few more hours. At home, he wet the bed during his nap. We have gone through so much laundry this week I can’t believe it!
As we got ready for Thursday’s radiation session Diego suddenly said “I love radiation” Amazing, this kid! Give him some toys and he is totally your best friend. I guess the fact that they let him use the remote to raise and lower the table has something to to with it to, but really “loving radiation”? He obviously has not made the connection between the barfing and the treatment, so I’m not going to tell him about it.

Today, Friday, was the first day that he has not barfed. I’ve tried to give him food (or NG formula) as far away as possible from the treatment, and make sure that he doesn’t have anything in his stomach. Having no appetite really works for him here. And when I say no appetite, I’m really serious. He eats bites of food a day, at the most. If it weren’t for the NG feeds he would be wasting away.

I’m sleeping in the same bed with him, to make sure everything goes okay with the NG feed. With a break from radiation over the long weekend, maybe I can skip giving the meds in the wee hours. On the plus side, we are almost halfway through radiation therapy. Perhaps Diego will be sad to see it come to an end, but I certainly won’t be!