Since I obviously haven’t gotten here to write anything interesting, I decided today that I would try to use this as sort of a journal to capture my days, interesting or not. This will provide a record of what I’m doing (which may be a dull as dishwater) and also possibly help me to write some more interesting things. We’ll see how it goes. I still have to get here regularly.

Backtrack to Catch Up

Sometime in May, Iqbal started having trouble eating. We thought it was because he often eats too fast. But it continued. His son, a former family practice doctor, convinced him to have me take him into the ER. He had a subdural hemorrhage a few years ago and he thought it might indicate a new hemorrage.

It didn’t. They found a mass in his stomach with spots on his liver. The doctor also mentioned his previously diagnosed “Restrictive Lung Disease,” which was the first either of us had heard about that. When I asked, she said it was like COPD. Later I looked up RLD and it is NOT like COPD. And after that I asked another doctor, and Iqbal does not have COPD or RLD. He does have shortness of breath caused by not using his lungs as he should have (shallow breathing), so that now he’s limited in his ability for deep breathing, which is what we need to do when we exert. Apparently that’s not all that unusual for someone his age. He also doesn’t have asthma, which another doctor says he has. He does have allergies. I don’t know anyone in the Willamette Valley who doesn’t. There’s at least one for every season.

The ER doctor recommended Iqbal stay for further testing to determine if the mass was was indeed cancer. Iqbal refused.

Two days later, as I was leaving for an appointment, he wanted several blankets because he was cold. This concerned me because it was the hottest day of summer, so far (high 80s, I think). When I returned, he had fallen and was quite out of it. And though he still complained of being cold, he was burning up. (Our thermometer had been misplaced so I didn’t take his temp.) We went back to ER. His temperature was 103° and he felt cooler than he had at home. It turned out he had a serious blood infection. Fortunately, even before we knew this, he agreed to be admitted this time. They did a gazillion tests and determined it is indeed gastric cancer and has spread to the liver. They suspect the cancer is what caused the blood infection. Once the infection was fully cleared, he came home with an oncology appointment.

We got to meet the oncologist, but he couldn’t do anything until the lab tests came back. We have the best oncologist in the city. He’s also someone I already knew from when I worked for my brother-in-law (who was a gyn-onc). All I really remember about that first visit was that, although because of the stage of cancer and Iqbal’s age (officially 90, actually probably 95), he would get palliative care rather than aggressive treatment, the doctor already had patients in the same age range who are responding positively to the immunotherapy and the fact that Iqbal walked into his office made him feel positive for Iqbal. The other was to take him back to ER if he got a fever 100.5° or higher.

One would think that we would both be distraught, but that hasn’t been the case. I heard him say to one of his older sons “Everyone dies and I’m ready, but I’m not dying.” He has repeatedly told me the same thing in various ways. As for me, well, I feel as confident as he does. He promised me he’d live to be 100 and says he will live up to his promise. I believe that God is watching over us, know that He always has. Even if we’re wrong about 4¼ more years, we will be comforted and taken care of for the rest of each of our lives. Sometimes I get very angry, but at the situation (why Iqbal, who has tried to take good care of himself?), not at God or anyone. And sometimes I get a bit weepy because I know that even 5 years is going to fly by too fast. (I’m still trying to figure out where the last 20 went!) But I also think this is God’s way of reminding me time is passing, which is much nicer than Iqbal suddenly being gone. When I’m tired I might get crabby at Iqbal, but even then I’d much rather take care of him than not to have him around. So, the situation is stressful, but we got this, by the grace of God. The sense of peace is truly amazing!

I think he was home for 2 weeks when he got a fever. Sort of. I still hadn’t found my oral thermometer, so I used the ear thermometer. It registered 101°. I dragged him back to ER (Man! We hate that place!) There it was only 95° (I think–if I remember correctly, but definitely less than 98.6°.) So we waited forever (during which time all I could do was pray for Iqbal and a woman sitting near us who could not stop sobbing). The doctor finally saw him. He took his temperature in his mouth, his armpit and his ear. It was progressively higher in each place, but not 101° again. There was no sign of a blood infection, but that is a three (or more) day test, so they couldn’t be sure. What they did find was that his hematocrit had gone down since the last time. Those two things required another hospital stay. He was there 10 days (July 7-17) this time! He was also on the old people floor rather than oncology, this time. The nurses said he was a wonderful patient, but he should have been more proactive. Both he and they enjoyed them taking care of him. It wasn’t ’til 2nd or 3rd to last day that he got a male nurse who gently pushed him to get up and walk a little. I was relieved at that, because I can’t give the same kind of care. I need him to be able to move from room to room. But I also understood he was too wiped out to do much. He was restricted first to clear liquids, then full liquids and then to a very limited menu. Nothing much appealed and he didn’t eat enough. He also got several radiation treatments because they figured, since they couldn’t find anything else, that he had a slow bleed in the cancer mass and radiation might stop it. (It apparently did, as his hematocrit has gone up.)

First week home, the lab results were still not available. Last week, he started a mild oral chemo. They told us a ton of possible side effects, but he hasn’t had any! (PTL!!) The worst thing that bothered him was a bloated stomach. He couldn’t eat when he had that. One night, as I waited for him to decide it was time to eat, I got a hunger migraine and then couldn’t eat. That made me put 2 and 2 together and we figured out that he got the bloating because he waited too long to eat–same reason I get a migraine. This week I’m trying to have a small dinner for us no later than 7 (our old dinner time) and earlier if I can. He still needs an occasional GasX, but he’s not skipping meals and says he feels much better. Now I just need to figure out how to get him to eat 6, instead of 3, small meals every day. So far, all the extra I can get him to eat is an occasional cracker or two. As long as he’s not eating too much sugary sweets, I was told not to worry about his sugar levels being too high–only to keep them from being below 100. Complex carbs and proteins are what he needs.

They finally got the labs back and I’m hoping he’ll start the immunotherapy transfusions every two weeks starting with the next visit. One of the first things Dr Pierce told us last week was that he has a 97 yo patient, with exactly the same cancer as Iqbal, who is getting no chemo of any kind, just the immunotherapy, and the cancer in her liver has disappeared and the mass in her stomach has shrunk 50%!! We are definitely hopeful.

So . . .

With all this unwanted excitement most of my projects have not been getting done. (Nothing really new there, excitement or not.) While he was in the hospital, he wanted me there, so all I did was talk to him, fill family and friends in on what was happening, and read a little. Since he’s been home . . . well, God bless my Adderall! Where I used not to be able to start a multi hour job if I had only one or two hours to work on it, this summer I think I’ve already done more than usual. I think that knowing Iqbal can’t help me keeps me from waiting for him to help (which he always meant to do, but my projects have never really been his priority). I’m still pretty distractable, but I’m no longer fully stopped by overwhelm.

. . . to be continued

I will try to remember to write again daily, if for no other reason, to keep a record for myself. But I also hope to get back into the habit of daily writing–journal, blog or whatever.