sunmaid's blog

Anger at the Ignorance of Others

2009-12-01T06:44:44Z

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The other night, a couple of dear friends who were doctors invited my husband and me over for dinner after which we hung out to catch up on the latest with each other. The wife started making small talk, asking about what’s been keeping us busy and I told her that we find ourselves living in limbo from one chemo session to the next. To this I could see her incredulous look. She continued to ask what my son's been doing and I said he’s at home if he's not in the hospital. She couldn’t imagine that he stayed pretty much at home day in and day out pounding keys on the laptop, going out only for blood tests or occasionally with friends until it was time to check into the hospital for chemo. Finally, when she couldn't contain herself, she made a remark about how it seems that our world has stopped and all our focus is on our son.

I felt the anger rising inside me as she minimized what we were going through and seemed to be flippant about it. She couldn’t fully grasp how cancer and its treatment affects daily living. Now, I can better understand the term living with cancer. It’s isn’t about living with the disease but in our case, with the demands of it’s treatment.

We don’t coast from one chemo session to the next, marking it on our calendar like a fieldtrip or outing to look forward to. In between sessions is this constant vigilance to see if blood counts are up or down at they should be and making sure my son has his daily medications including epo shots,stays hydrated, eats right, stays away from raw food, avoids the threat of infection, and in the midst of all these, to try to live a normal life and to find joy in each day with all its limitations.

While I was talking to her, I couldn't help but think that she would never understand what we're going through and I'm grateful for this site where members understand and know where I'm coming from.

The Home stretch

2009-11-23T01:16:12Z

On Nov. 15-17, 2009, my son had his 17th course of chemotherapy. After at least 20 hospital confinements since January this year, from as short as 2 nights to as long as 2 weeks at a time, this last in-patient session is a milestone for us. After ten months that ran the whole gamut of treatment from chemotherapy to surgery to radiotherapy with major hiccups along the way, it was a celebratory occasion as his doctors: urologist, nephrologist, thoracic-cardiovascular surgeon, and even the chaplain, dropped by to congratulate him. We still have two more out-patient sessions remaining and if all goes as planned, he will have the last chemo session on December 21, 2009.

PET-scan will be in January 2010 but I'll let tomorrow take care of itself.

Light at the end of this rough tunnel

2009-10-06T14:28:09Z

Nothing in this road is ever easy. I thought that when chemo shrank my son's kidney tumor and it was removed during surgery, that treatment would be simpler, easier afterwards. I find that I can hardly breathe a sigh of relief because if it isn't one thing it's another.

Technically, my son is in remission and his chemo now is sort of a mopping up of any malignant cells that may have been left behind. We find that this point in his treatment his bone marrow is having difficulty producing white blood cells and his neutrophil count has been low. Whereas before, he would need only 2-4 doses of granulocyte-colony stimulating factor(G-CSF) after chemo to bring his counts up, this time he needed 7 doses in all before it reached a safe enough level for him to undergo chemo.

He had course 15 of chemo yesterday and we were discharged from the hospital today. Thankfully, he didn't experience any vomiting this time and our stay was uneventful. The actinomycin-d, which caused his platelets to crash and his liver enzymes to reach the roof was no longer given and instead his dosage of doxorubicin was increased. His scheduled chemo treatment is until course 19 but I am hopeful that the last session will be dropped and we can celebrate a merry Christmas after course 18. Of course, it all depends on his oncologist. I just pray that he may finish his few remaining treatments without any hitches.

A sense of things winding down

2009-09-23T12:35:47Z

Today, my son had his last out-patient chemo. In his remaining treatment schedule, he needed to undergo 2 months of weekly out-patient chemo in July and August but this was interrupted when he suffered complications from side effects of chemo. Next week, he'll have in-patient chemo then it'll be every three weeks thereafter. As the countdown to Christmas has started in my country, so have we started the countdown to the end of chemo. We are hopeful that it will be indeed a merry Christmas.

At this stage in my son's treatment, there is a sense of things winding down.The pace isn't as frenzied or as hectic or as desperate unlike in the months that followed his diagnosis. I still remember everything about his illness we needed to digest then: when he started chemo and there seemed so much we needed to remember about his home medications, when he needed to be monitored regularly to see if the tumor was shrinking, when he had surgery to finally take out the tumor and his left kidney along with it, when he needed to undergo radiation withhin 10 days after surgery, when he had gone through 5 courses of chemo and still needed 14 more, when his platelet count became dangerously low and he went into liver failure...I was never fond of roller-coaster rides and I hated the unpredictability of this disease. It had a treacherous nature that robbed us all of our normal lives.

Now, I look forward to the last day of chemo- anticlimactic as it may be...

LIFE-SAVING CHEMO, LIFE-THREATENING SIDE EFFECTS

2009-08-10T23:41:32Z

The past 10 days have been a nightmare and never before have we faced chemotherapy side effects of such proportions. My son had to be confined for platelet transfusion and just in the nick of time as we found out that his platelet count had plunged to 17 (thousand) and even dipped to a low of 6 (thousand) putting him in grave danger of spontaneous bleeding. The days became a frantic, desperate race against time to transfuse the platelets and also to find the needed amount of the right blood type (A+) as the hospitals blood bank had run dry. If there is one thing I have learned since my son was diagnosed with cancer, it is that people care and are willing to help when given the opportunity. We sent out anxious pleas for blood donors through messages reaching thousands in real time at this computer age and received replies from people who knew people with the blood type we needed and were willing to donate. Strangers appeared at our hospital door ready to be screened by the blood bank. Relatives from the province who got wind of platelets available in their local blood bank traveled all the way to the city just to bring it to us. The tremendous response and effort of family and friends paid off as we were able to pool together the 28 units of platelets and 3 units of packed red blood cells needed to sustain Franz. After 4 days of transfusions his bone marrow, suppressed by the chemo drug actinomycin, began producing adequate blood components and his blood counts picked up. Immense relief and elation flooded my being at the wonderful news he was going to be all right. The cause for jubilation, however, was short-lived as the following day we faced another crisis. Franz’s liver was enlarged and its function impaired, the liver enzyme was highly elevated at 15 times the normal value and water had accumulated in his abdomen and lungs. He had hardly returned from death’s door and here he was again in mortal combat. As in the battle with his diminished blood counts, all the excellent doctors and medicine could do for him was support him with diuretics and vitamin K while his body faced the brunt of the healing work. It was alarming to see him so physically weak. It was all he could do, as I would hoist his once sturdy body each time he needed to sit up in bed or when I would lift his head for his lips to meet the glass when he’d drink his medicines. He would doze off in an instant as his days disappeared into a string of endless nights. This was a frightful sight for me as I had flashbacks of an aunt with breast cancer that metastasized to the liver. My last memories of her were of her bloated abdomen and how she just drifted off to sleep most of the time. She became weak and incoherent until one day she never woke up. It was all I could do to quell the rising panic within me and to rationally point out to myself the vast differences between my son’s situation and hers. That memory compounded an already terrifying time. Thank God my son’s spirit is strong and his body resilient! The peacefulness of his slumber belied the waging war within him. After only two days, his liver enzyme was still elevated but the figures were down to half, at only 8 times the normal value. His doctors couldn’t hide their surprise at the speed with which his condition was improving. All the other signs pointed towards his recovery: the size of his liver, as well as, his abdomen had decreased considerably and his lungs sounded clearer indicating reduced fluid. With his condition stable they finally sent us home. For now, his chemo is deferred indefinitely until his liver function returns to normal. He’ll have some follow-ups with the liver specialist and although I want him well as soon as possible, I also wish he’d have more time to recover before he resumes chemo. He has that undeniably sick look with sunken cheekbones, ashen pallor and eyes haunted by his brush with death. I want to nurture him with good food and love him back to health.

One Step Closer to Wellness

2009-06-19T23:33:34Z

After 4 months and 5 cycles of chemotherapy to shrink the tumor in my son's kidney he was finally operated on last week,June 9, 2009. The surgery went well and the urologist was able to remove his left kidney along with the tumor intact and there was no spillage outside the kidney. My son is healing well from the surgery and the long cut in the middle of his abdomen is closing already and will hardly be noticeable soon. We had to stay a little longer because he got an infection and needed antibiotics so all in all we were in the hospital for a week and seven days and we both just couldn't wait to get home. He has started radiation therapy the other day and still has 4 more sessions to go then back to the hospital for another round of chemo. Still have to find out from his oncologist how many more rounds to go. In the meantime, trying to enjoy being at home and doing the usual chores and trying not to think of going back to the hospital next week.

My fear and his anger

2009-05-15T05:15:45Z

My son and I had a spat today and it feels awful. He'll be watching "Angels and Demons" in the theatre tonight and I am worried because it's the first day and I know it's going to be full- who knows what germs are lurking. He'll be taking the necessary precautions but I wish he didn't expose himself- is it worth the risk? Why couldn't he watch in a less crowded theatre on an ordinary day??! We talked about my fear whenever he goes out and about his anger at all the restrictions but we didn't come to a meeting of the minds, much less the hearts. And I ache inside because we shouldn't be arguing or butting heads, not in the face of this life-threatening disease. How can I detach when I fear his loss? He wants me to treat him like a normal teen and not a cancer patient - How can I not worry?

He goes out, I worry

2009-03-21T01:49:55Z

Yesterday was a busy day for our family. My eldest son had been planning to watch a Neil Gaiman play in the state university and I had been on edge about it, half-wishing he'd change his mind. Since he started chemo February 2009, I've been so paranoid about germs and infections. There in lies the difficulty because teen-ager that he is, he likes his independence and wants to be with his friends every now and then. So far, I think I've been doing a pretty good job of pretending I'm not sitting on pins and needles every time he goes out. Who am I kidding? His blood works, which we monitor twice between chemo came back okay. That's such a relief because then I don't have to worry as much about him being too susceptible to infections. While he was out with friends, I grabbed the chance to go out with a friend and with my youngest. It's nice to just hang out and enjoy the company of others and leave behind the reality of my son's illness even for a while. Sometimes I still wonder of it's all true. Anyway, considering we were a couple of girls, I don't know how we ended up watching a violent, graphic action flick (my youngest got the better of us) instead of a chick flick. All in all though it was a nice relaxing time, just what I needed to soothe my frayed nerves.

Caring for my son

2009-03-18T22:38:47Z

Over the weekend, my son had his 2nd session. It wasn't as smooth as the 1st time because he vomited on the 2nd day in the hospital and once again the night we got home. I'm thankful that there were just two incidents. It is scary and sad to see him go through this but he is very courageous and takes it all in stride, no complaints. After the second time at home, I was offering to give him his anti-vomit medication but he preferred not to. I trust that he knows what he can and can't handle. He likes to exercise control over his body and the situation and I respect his decisions. The wonderful news is, he is responding very well to chemo. The ultrasound of his left kidney showed a considerable decrease in size from 20 x 18 cm to 13.9 x 6.6 x 7 cm. Even the radiologist couldn't believe his eyes and was wondering if this was possible. I believe in miracles. Today, a lovely couple who are family friends and both doctors are returning to the U.S. with the paraffin block of the renal mass and bone marrow biopsy. Upon our doctor's recommendation, we are having these sent out for a second opinion. Waiting for test results are always very difficult because in our case, while my son was being diagnosed, each test that came back seemed to bring worse news than the last. It's been a downward spiral, a nightmare, even up till now, I wonder if this is all real and not just some sick, perverted joke. However, it's a little easier now to know that he is being treated already- that something is being done about it. Strange thing though, when we first found out and even up to now, I never asked the question "why?" Some people would talk to me and tell me," I'm sure you're asking yourself why? Why him? When there are a lot of bad people out there who deserve to be sick." I'd tell them that on the contrary, those questions never entered my mind. Let me tell you where I'm coming from. A couple of years back, a very good friend of mine, a nun was headed to a province to bring relief goods to those hard hit by a super typhoon. She along with several other nuns in their congregation met an accident when their van was hit by a truck on the highway. They all had to be confined in the hospital because of bruises and concussions, my friend's vision was affected. Anyway, it was then I realized that bad things happen to good people or that things just happen and this doesn't mean that it's a punishment from God for not going to mass on Sundays or whatever. I come from the only predominantly Catholic country in Asia and people here can have very closed minds about religion and can be very judgmental, also I'm not a practicing Catholic, I believe in a personal relationship with the God of my understanding. So, that's why I never asked why.