Mathew didn’t go in for his next inpatient chemo today.
His platelets are still too low. They were at 34 on Thursday so the hospital called and asked us to take him in yesterday for more blood work. Then the hospital called today to say his counts are high enough to go in. Since his hemoglobin, white blood cells and leukocytes were ok for chemo then it means the platelets are to blame. Mathew is getting his usual Monday work up tomorrow so perhaps Tuesday will be his lucky day. As much as I hate the inpatient chemo it will be a relief when it is finished.
Last Monday Mathew had a platelet transfusion and on Tuesday he received two units of blood. By Thursday he’d rebounded and was feeling much better. In fact we made it to the movies yesterday, to see “Captain America”. He was ecstatic to go to the theatre and watch a superhero movie on the big screen. John and I enjoyed the excursion but it was such a beautiful, warm and sunny day it was hard to leave it behind for a dark theatre. I mentioned it to Mathew and he replied that it isn’t often he is well enough to go so the weather didn’t matter too much. For the rest of the day however he opted to open his bedroom curtains to let the sun shine in. He prefers his curtains closed so even the sun cheered him up.
Spring is so close now and a wicked rain storm got rid of a lot of snow last week. With the beautiful day so many people spilled outdoors just to catch the season’s first wonderful day. A few more days like that and all of our spirits will be lifted. The long winter has certainly crushed my spirits and I want nothing more than to see the first crocuses, tulips and daffodils peeking up through the soil, getting ready to bring a little colour to our landscape.
This is now the second or third time Mathew’s platelet count affected his chemo schedule. It looks like the regime takes his body longer to recover now. I worry about the next – and final – 3 chemo cycles…how hard they will be on him.
Mathew’s treatment is now seven months and counting. That isn’t including the first two months after his tumour was diagnosed and biopsied, etc, until chemo cycle 1 started in September. This new world of ours almost feels routine now but it continues to wear us down and out. There is still the matter of surgery once chemo is finished and he has a recovery period. Between now and then is the worry known as “scanxiety”. This term is used when the patient has scans that will shed light on how the cancer fight is going. The time between the tests and the results are known to cause acute anxiety and worry. It is a back-and-forth affair where one moment you try to push it out of your mind and the next minute it creeps back in. With the end of treatment in sight… all we have left is whether or not this all-out-war on Mathew’s cancer worked. This is the best treatment they gave him.
The best. It is almost over. Now the real worry is about to begin.
Did it work?
Was it enough?
There is nothing you can say to make it better or to make us feel better. Our feelings are belittled when someone waves his or her hand and tells us not to worry and everything will be fine. Really?
REALLY? If that was the case why didn’t we choose you to be Mathew’s Oncologist? Or Radiologist Oncologist? Or how about the Radiologist who reads all the scans and writes the final report? Why aren’t you Mathew’s family doctor? Make no mistake ~ these professionals are taking the matter very seriously and haven’t fluffed or downplayed the seriousness of the situation. If they haven’t made light of it all or tried to ease our worry – and we have been in constant contact with them over the last 9 months ~ then don’t you presume to know better. It angers me.
Unless you were there for every heartbreaking moment, cleaned up after every accident, tube fed every liquid meal, took him to all the appointments and stayed with him 24 hours a day since this rotten journey started, you don’t have any business telling me not to worry.
I needed to get that off my chest.
It is hard to write when I’m feeling down or anxious or mean. But I’ve had enough of people making light of the situation who have no right or reason to. We are talking about my son’s life.
It bloody well matters.