April 4, 2018 Wednesday
Today is a good day! So, what makes today a good day? I woke up this morning at 8:30 feeling fully rested. That’s been rare lately. One of the side effects of Brentuximab and adrenal insufficiency is insomnia, so lately, to skip the tossing and turning for hours until I fall asleep, I’ve just been occupying myself until 12 or 1 am by reading or doing something on my computer. I then try to sleep late, until 9 or 10 am (or later depending on how tired I am) if my internal clock lets me.
I still try to get at least 8 hours a night, but that doesn’t mean I wake up rested. Studies show that sleep after midnight is not as deep or as sound as sleep before midnight. So, even if I get 8-10 hours of sleep by sleeping late, it’s not sound sleep. I wake up more often or dream in a half-wakeful sleep.
Last night, I feel asleep around 9:30 and slept solid until 8:30 this morning. I knew I had been exhausted lately. I just didn’t realize how bad it was. I must have been really tired to sleep that soundly and for that long. It felt really good to wake up and actually feel like getting out of bed! That’s pretty rare for me these days!
I also woke up and I didn’t feel sick. The 5 mg Prednisone dosage seems to be doing the trick. I woke up hungry and wanting to eat, not hungry and nauseous. I don’t realize how much constant nausea affects my daily quality of life until my stomach returns to normal.
So, if today is a good day, with better energy and little nausea, how do I plan my day? Well, since today is a good day, I will be getting a bath later on. I leave bathing and other extended personal care for days I feel relatively well and energetic. If I do that, it doesn’t take so much out of me. I’ve also been doing other little tasks: making sense of the food in my fridge, heating up soup, filling my pill organizer, etc. In between, I do sit down stuff like download the updates for my iPad or write next week’s blog post so I don’t get too tired. If today wasn’t so windy, it would be an even more perfect day! I’d go out for a walk! As it is, too much wind makes a walk too exhausting, so I’m staying indoors. Ah well, I shall take what blessings I have today!
I’ve finally joined most of the rest of the world on Facebook. I’ve thought about it off and on over the past number of years, but wasn’t sure I wanted another reason to be on my phone. However, I decided I can join Facebook but not download the phone apps for it and turn off most email notifications. If I do it that way, I’m not constantly feeling the need to check the app. I can just log in my account on my computer a few times per week to stay current. It’s been working well so far.
I like Facebook for two reasons: finding friends I lost connection with years ago and being a part of support groups, such as transplant or cancer support groups. While I do read some cancer forums on a semi-regular basis, many of those don’t have much activity. The Facebook groups have largely taken the place of cancer forums. The Facebook groups are quite active with stories, questions, and posts. I’ve been enjoying the interaction. Since writing is my most expressive way of communication anyway, the opportunities to post are fun.
I’ve been assuming my oxygen needs are permanent, but another transplant patient said that she was able to wean off oxygen 3 years after transplant. The stories tell me that many patients still experienced slow improvement up to 5 years or more past transplant. Hearing that makes me hopeful that with time and perseverance and exercise, I can increase my lung capacity and regain more of the energy and strength I’ve lost. Many also mention that checking the thyroid and hormone levels is crucial following transplant. I’ve had that in the back of my mind for a while, but the stories reminded me to ask my doctor about it. I’ve added it to my list to talk to my doctor about tomorrow at Hershey. That list is quite long by now!
April 14, 2018 Saturday
Today, my dad told me I look and act better than I did the last time he saw me, which would have been last November, I believe. That comment drew me up short, but he is right. I’d say I’d have more energy than I did then and cough less. Plus, I’m no longer puffy from the extra Prednisone. Of course, I have hair again too, which helps matters.
I don’t see my improvement unless I look back a few months or someone who hasn’t seen me for a while tells me of them. I do think that I did not know how much the lymphoma itself was contributing to my lack of energy and cough until I started Brentuximab and started feeling better.
Today it is warm, about 80 degrees! Yes, finally! I’m going on that walk today!
I saw my doctor last Thursday, plus had my 8thtreatment of Brent. When he asked me how much I’m coughing, I was surprised to be able to tell him that the coughing is better than it used to be! I’m down to taking my cough medication only 1-2 times a day rather than 2-3. I also use fewer cough drops. That’s definitely progress!
The itchiness is manageable with the lotions and creams I have now. He said we can stop the IVIg infusions, as my immunoglobulin levels look good. He approved the idea of doing a cancer recovery exercise program to improve lung function, as well as taking walks.
I told him my nausea and appetite issues I had had, and he said that it’s probably not GVHD of the gut. He said that if it was, I would have more severe issues, such as diarrhea and vomiting. It sounded to him like adrenal insufficiency, that the adrenal gland is not producing enough cortisol to replace the Prednisone I was taking. That’s why going back up to 5 mgs of Prednisone helped. He said we’d stay at 5 mgs Prednisone for now and address the adrenal issues later.
I asked him about a DLI (donor lymphocyte infusion), which would simply be an infusion of additional stem cells (still frozen from when they were collected) from my sister. The point of a DLI is basically to kickstart GVHD so it has a graft-versus-lymphoma effect. I think I’ve mentioned it before, but we actually want a little bit of GVHD. If my donor immune system is active enough to cause GVHD, then that means it is likely active enough to fight the cancer too. Dr. Rybka told me there isn’t much point to a DLI at this time. I already have mild GVHD as indicated by the itchiness, small rashes, and elevated liver levels. I already have the graft-versus-lymphoma (GVL) effect of mild GVHD. A DLI now could simply make the GVHD worse and provide no benefit. Obviously, if at some point the GVHD goes dormant, then we’d probably revisit the DLI option.
As far as CAR-T cell therapy goes, there are still a lot of unknowns. Both my doctor and I are hopeful, but only time will tell. Until then, we are simply grateful that Mr. Brent is doing his stuff and knocking out the cancer like so many bowling pins! Hmm. Now I have a mental image of Mr. Brent as a bowling ball, with a wicked grin on his face as he zings down the lane to knock out the pins! He knocks them all down and score!! He does a little victory dance, then zings down the lane again to knock out more pins!
April 20, 2018 Friday
Tomorrow is 14 months since transplant. Every day I’m alive is one more day I didn’t know if I’d have, one more day to live to the fullest, one more day to remember the goodness of God and the joy of life.
I have a chemo treatment on Monday, and then I leave on my trip on Tuesday!! It’s hard to believe it’s only 4 days away! My original plans were to leave on Sunday, but this coming Thursday was my normal week for another treatment of Mr. Brent. My option was either leave a bit later than planned or wait 6 weeks for my next treatment. I wasn’t comfortable with that long of a wait. If Mr. Brent is working so well, I don’t want to jinx him by waiting too long between treatments and giving the lymphoma a change to grow again.
So, Mom and I just rescheduled some of our stops, basically adding on one day at the end. We will still be in Denver, CO for the conference on April 28 & 29, and that’s what matters. The rest was fairly easy to plan and reschedule. My basic itinerary is as follows: April 24 to Ohio to stop overnight at my sister’s, April 25 to Illinois (my sister as my chauffeur), April 26 to drive to CO, April 27-30 in CO, May 1 in WY, May 2-4 in South Dakota, May 5-7 in Minnesota, May 8 return to Illinois. I will the spend about 2 days in Illinois, and then Mom will chauffeur me back to Ohio. My arrival back in Lancaster County will be around May 14.
Obviously, these are the plans, so they are subject to change, largely based on how well I feel and how much energy I have. If we need to slow down and add an extra day, we will. I know I will really need to pace myself, to not wear myself out so much I can’t keep going the next day. I know I won’t be able to do or see everything I’d like at our sightseeing stops, but that’s okay. I’m just grateful I can do it at all! When I feel like I’m missing out, I just remind myself that there is a day coming when no one will ever miss out ever again. Till then, I will accept when limitations interfere with dreams or plans and rejoice in what I can do, not simply chafe at what I can’t. Life is too short to live it moping!
This week has been busy with trip prep, though I’m also being careful to get enough sleep. The last thing I want to do is start on my vacation exhausted! So many little details: checking my car to ensure it’s ready for a trip, shopping for needed items, ordering prescriptions that will run out while I’m gone, make a packing list, readying my camera, testing my portable oxygen equipment to make sure I have enough batteries for it, and so on. When a person has medical issues like I have, the list of things to prepare and pack gets quite long!
This will be my last update for about a month unless something untoward happens.
- For Mr. Brent to keep knocking down the bowling pins!
- For safety in our travels.
- For an enjoyable time together for my mom and me.
- For strength and energy to enjoy the trip.
God is good.
Disturb us, Lord, when
We are too pleased with ourselves,
When our dreams have come true
Because we dreamed too little,
When we arrived safely
Because we sailed too close to the shore.
Disturb us, Lord, when
With the abundance of things we possess
We have lost our thirst
For the waters of life;
Having fallen in love with life,
We have ceased to dream of eternity
And in our efforts to build a new earth,
We have allowed our vision
Of the new Heaven to dim.
Disturb us, Lord, to dare more boldly,
To venture on wilder seas
Where storms will show Your mastery;
Where in losing sight of land,
We shall find the stars.
We ask you to push back
The horizons of our hopes;
And to push into the future
In strength, courage, hope, and love.