I was really forward to today – the weather report is amazing… high 50s and sunshine.  This is almost the weekend when we expect to make an extra effort to keep Mark isolated due to a low WBC – but I was confident that Thursday would be just the ideal day for me to get those last bushes moved while they are possibly still dormant.  I also love being back on our own property and getting work done – it is great therapy.

Well, rather than fresh air we are in the “masks are mandatory” section of Huntsman for the day.  Yesterday’s labs came back with low hemoglobin… so we packed a little lunch and headed to the hospital.  It is a good explanation for why Mark has scarcely been able to get out of bed for a few days.  His nurse just told him that she reminds him of the old grandfather on the original Charlie and the Chocolate Factory – the one who lays in bed for years and then jumps right up ready for an adventure.  She expects that Mark will be jumping right up after receiving two units of blood.  I have been pushing him in a wheelchair all day because walking is too strenuous.  

Back to his bloodwork – when our oncologist told us that he would be stopping chemotherapy after the next round we were kind of surprised.  We knew that he would be done with doxorubicin because there is a lifetime limit of six doses, but we were also told that the ifosfamide could be given for much longer so we figured that would be our lot… but our oncologist assured us that his bone marrow would be shot and his body needs a nice break to recover.  These two units of blood are coming a week earlier than we anticipated so she must know of what she speaks.  They told us that this was going to be very intense, aggressive chemo in order to deal with the intense, aggressive tumors.

It may be helpful for someone anticipating chemotherapy, so I thought I would write about some of the side effects of Mark’s chemotherapy- just last night as he went to sleep Mark said something like, “Well, we see what happens next – something different every day.”

Everyone expects chemotherapy to bring about nausea and the loss of hair.  Yep – those are part of our life.  

We knew that Mark would be more susceptible to infection but the white blood count dropped down to zero – a bit lower than I would have anticipated.  He has had multiple blood cultures as a result because the low count came along with fevers and chills.  These turned out to be the result of the tumors themselves (just as they were during radiation), but it was too dangerous for them to accept that without double checking blood cultures.

We also hadn’t considered that he would lose his nose hair and ear hair, thus making him that more susceptible to infection.  

Mouth sores – these are also normal and to be expected.  Mark has been great about doing the saline mouth rinse they gave him.  Initially he had to give up any sort of hard candy, sucker, cough drop, etc. because they would tear up his mouth.  That seems to be resolved.

Night sweats – I think that this has been the absolute worst thing for Mark.  Waking up 2-3 times a night and finding yourself and your bed completely soaked is terrible – especially when you like to sleep in a cold room with the window open.  We have a great little space heater we now keep on the bathroom counter so that he can make it that far and have a warm spot while he changes.  He moves to different beds and has learned that he can sleep between beach towels and return to the same bed – only changing the towels.  Our room has piles of blankets and towels just in case… but this is our non-night-sweat week so happy day!  Is this from the chemo or the cancer??  (One night the wetness made it my side of the bed – it was a bit like sleeping with a bedwetting child… but not so warm.)

Thermoregulation in general has been all out of whack.  Prior to this cancer I think Mark has been cold maybe twice since I have known him.  

Itching – For a week or so Mark’s back was soo itchy, mostly at night.  Sometimes I would wake up at night and he reminded me of Baloo the Bear from Jungle Book – you know when he scratches his back against a tree?  Mark would be trying to use the flannel sheets to scratch because it was so all encompassing.   I could make sleepy attempts to scratch enough to get him back to sleep.  This lasted about a week.

Arm sores – One day Mark showed me a few raised sores on his arms.  The next day they were like little open sores.  Soon he was covered with a sort of rash or blotchiness.  It covered his arms, chest and back.  On his ankles it was more of a pinprick red rash.  At this point his skin became super sensitive.  He couldn’t stand to be touched and even the shower was painful.  Again, this lasted for about a week.

Our first unit of blood is almost complete.  The nurse said she can already tell a difference because he is no longer the color of the hospital blanket…

Let’s see – how about the appetite?  It doesn’t exist – but he is a trooper about having a little bit of food when I can find something that isn’t completely nauseating.  Most of the time he has complained about a metallic taste which ruins the taste of food. Initially this meant that he didn’t want to ruin his favorite foods, but now he just doesn’t like much of anything.  

One day I cut up some left over potatoes and fried them up like hash browns with ham and cheese – like a baked potato.  It was really good, but the next day he announced that he did not like cheese and could not eat cheese would not eat cheese.  Mark loves cheese, but not for the present… cheese is OUT.

Several weeks ago he was craving hot dogs.  I bought some yummy looking buns and cooked them the only way I can stand to eat them (other than over a fire) – I cut them in half and fried them in butter.  The next day, “Did you cook that hot dog in butter yesterday?  I don’t like butter.”  And just like that – butter is OUT. 

Milk was also OUT for awhile – until the craving for Fruity Pebbles set in.  We have had purchased more Fruity Pebbles in the past month than in the past 34 years!  During the week prior to our last chemo he was feeling well enough to accompany me into the grocery store.  We came out with a basket full of cold cereal – mostly of the type we don’t buy.  They are sitting in our pantry, along with PopTarts (gross) and SnackPack pudding.  We don’t buy this stuff – and it turns out he can’t really eat this stuff… but he craves it. (He does eat the Fruity Pebbles – usually mixed with something like Honey Bunches of Oats.)

HAHA – We are in an infusion center, not the regular one… much less fancy.  We are separated by curtains.  The nurse asked the patient next to us (an elderly man) if anyone had talked to him about therapeutic phlebotomy.  “What?!” He asked in surprise.  “Therapeutic phlebotomy, we really do bleed people.”  At this point he was literally on his feet.  “A LOBOTOMY!!??”  The entire nurses station burst into giggles, along with me.  

After that little humor break I can’t think of any other particular side effects.  Certainly GI trouble.  Weight loss. Skin issues, mostly dryness.  Lack of conversation…

While speaking of unexpected chemo effects – when one of my kids had chemo the doctors told them to expect hot/cold sensitivity.  Wow – they were not kidding.  Before chemo started we would ask for refrigerated juice so that it could be enjoyed cold.  As the infusion progressed it was out of the question.  Even breathing air was too cold.  Touching a jar of mayonnaise on the store shelf (room temperature) was too cold.  They would suffer through the day and then roommates would tuck into bed with a warm, insulated water bottle because the sensitivity was inside as well as outside.

Before the last hospitalization I talked to Mark about please trying to have a better attitude again.  No more Mr. Gwumphead. He made a great effort and it made all the difference for both of us.  As we drove there I told him I would try to change my attitude about the chemotherapy drugs – whenever they are being hung I get a sick feeling thinking about that poison being pumped into family members. I usually turn away or conveniently choose to be out of the room, but this time I smiled to myself.  I was able to look at those IV bags and consider how grateful I am that chemotherapy exists. It is a modern miracle! Right now it is actually one of our best friends. 

Later – we made it home about 6:15, both of us completely wiped out. Mark’s color is much better but he is not feeling much better, he still needed a wheelchair to get out the door. A friend brought us a delicious homemade Italian dinner. I ate the cheesy parts (yum) and Mark managed to try a bit of everything. I love to see him eat. I am thinking chemo doesn’t actually rank as one of our best friends – it certainly doesn’t deliver yummy food. But I am still grateful that it is a part of our life right now!