July 17, 2018 Tuesday
Today is a pleasant day again here in Tijuana. Most days it’s not bright sunny; instead, it’s overcast and hazy. That definitely keeps the temperature lower. In the evening, the breeze can get quite cool, especially down by the ocean.
I look like a well-roasted tomato. We spent about 6 hours on the beach on Sunday. It was overcast most of the morning, so we didn’t think about the need for sunscreen until the damage had already been done. I definitely got well-toasted on my face, arms, and lower legs. It was bad enough that my skin stung and burned for the next 24 hours. It worried me a little, as a bad sunburn can trigger skin GVHD. So far, it appears that no lasting harm occurred. I will probably be very “a-peeling” in a week or so!
The ocean is lovely. Of course it is. It always is, isn’t it? Lovely and awesome and marvelous. I could sit on its shores and listen for hours to its roar and drink in its beauty. The ocean is barely two blocks away, but it is downhill, plus there are 4 flights of steps down to ocean level. Going down wasn’t hard for me. It’s the coming back up that was the killer, but it was worth it! Last night I went down to the ocean again, but not down on the beach. I just sat at the top of the steps with the panorama of the beach and ocean spread out below. That was lovely too! I keep hoping for a sunset, but so far, it’s been too overcast.
Yesterday, they needed to do a full panorama x-ray before extracting my one rotten tooth on the upper right. They do not have an x-ray machine here at the clinic, so a driver dropped us off at Premium Dental to get the x-ray. The 20-minute ride was interesting. The traffic makes Mom gasp, which amuses me. It’s the typical traffic of a third-world country. Everything but vehicles has the right of way; traffic laws are more like suggestions; extra lanes form on a whim; motorcycles zip between vehicles; street vendors try to sell wigs (I’m serious!) during stopped traffic at red lights; and double parking is normal. Actually, it wasn’t really even all that bad. Could have been a lot worse! After a while, you just learn to ignore it and trust the driver.
Yesterday was market day on the street outside the clinic compound. Many vendors set up booths and tents, selling anything from clothing to toys to tools to fruit to appliances! Pretty much looks like a giant flea market Mexico-style. Mom and I walked the street for an hour or so. Well, she walked; I rode the wheelchair. We didn’t buy anything, but it was fun to look.
This morning, I had my back upper right molar extracted. The dentist numbed me very well with anesthesia, but the root was deep, and he simply couldn’t numb me far enough that I couldn’t feel anything. Thankfully, it wasn’t bad and was soon over. He stitched me up with a few stitches that will dissolve on their own. I kept gauze in my mouth most of the afternoon, as it bled for a while afterwards. He gave me prescriptions for pain and an antibiotic. So far, I don’t have much pain. It just kind of aches and my cheek is swollen like a chipmunk’s. Right now, I’m eating soft foods, so I don’t stress my jaw too much.
That was the last of my dental work! I am so glad! Overall, it went well, but I’m glad it’s over! I do need to pick up the night guard they made for me out of a mold of my teeth. Apparently, I clench my jaws at night, and the pressure results in receding gums. We have one more day here. We fly out Thursday around noon.
July 24, 2018 Tuesday
We arrived home safe and sound around 2 am Friday morning. Our last day in Mexico was last Wednesday. I spent most of the day recuperating from the tooth extraction the day before. I slept in the afternoon and then we packed up. Well, Mom did. I sat on my recliner and gave her instructions. Afterwards, we went to the beach one last time. This time, there was actually a sunset over the water! I probably snapped more photos than I’ll know what to do with.
Our day of travel on Thursday went well. We left the clinic at 8 am and arrived at the airport at around 11. Crossing the border took maybe 60-90 minutes. Could have been a lot worse! The street vendors made the most of it as we sat and crawled in fits and starts. The flight from San Diego to Denver, CO, was delayed a bit, so we were late getting to our connecting flight to Baltimore. Instead of using a wheelchair to transport me, they loaded us up in one of those extended, golf-cart-type buggies you see in airports and drove us quickly to our gate. We had little time to spare, but we made it. That meant that we had to buy snacks on the flight since we did not have time to grab supper in the terminal. The homeward flight was uneventful, and our car was secure in the long-term parking lot when we arrived at our parking space. Thank God for safety in our travels.
Since then, I’ve been catching up on sleep and a few odds and ends. Some of us Martin cousins are getting together to sing and record a CD August 11 and 12. We spent many hours singing together during our growing up years, so our age group (the 11 of us at the tail end of the cousins) is getting together to make more memories and record those memories. No, it’s not going to be especially professional, and we aren’t planning on marketing them. It will simply be for our enjoyment and our families’ enjoyment. I’m kind of the one behind getting it together, so I’ve been making phone calls to get the final plans made.
My mouth still hurts from the tooth extraction. Not badly. It’s more an annoyance. I’m still a little careful how and what I chew until it heals. The stitches haven’t dissolved yet.
Mom left for Ohio today. She was a bit unsure about leaving me by myself due to how bad my coughing is again. Lately, the littlest bit of activity, something as simple as walking the 15 feet to my bathroom, can send me into violent coughing paroxysms, accompanied by retching and gagging. Not fun. I’m not moving from my chair more than I have to these days. As long as I sit fairly still and take my cough medicine every 4 hours on the dot, I don’t cough much. I’ve been drinking my cough syrup like it’s chocolate. That’s stretched, but not by much.
No, this is not new. The week before we left for Mexico I realized that my coughing was worse, but hoped it was only my imagination. I didn’t say anything because I didn’t want to worry anyone needlessly. It didn’t get better in Mexico; it got worse. I realized then that most likely, the reprieve I was hoping I’d have was just that: a hope.
Which brings me to the biggest news in this update. The lymphoma is growing again. Last night, my coughing woke me up at about 3:30 am, the first that’s happened since the croup and pneumonia I had after my transplant. That’s when I realized I’m not waiting any longer to call Dr. Rybka and tell him that my cough is worse. He had told me that if there are any changes I’m supposed to let him know. So, I called his office at 3:30 am and left a message that it’s worse and that I need a CT scan. Radiology called me around noon today and told me my CT scan was scheduled for 5:30 pm.
I wasn’t scheduled for the doctor today, just the scan. As late in the day as the scan was, I wasn’t expecting the radiology report to be completed until tomorrow morning. However, after I arrived home, I checked the status via my online Hershey account and was surprised when the report was already completed and uploaded to my account.
So yes, the CT scan shows about a 45% increase in the size of the mass since the last scan on June 7. The cough is violent right now because the mass is pressing directly on the right bronchi, the tubes that connect the trachea to the lungs. Basically, the mass is pinching the bronchi shut, like a kinked garden hose. The pressure triggers coughing because my body thinks there is something inside the bronchi that’s obstructing air flow. My body is trying to expel whatever is in the way by coughing. Because the obstruction is actually on the outside, the cough accomplishes little except making me miserable.
Incidentally, the CT scan found something else: a pulmonary embolism (blood clot) in my right lung! The danger from the embolism is past. The danger is when the blood clot first hits the lungs. If it enters the lungs without too much issue, the body will simply absorb the blood clot. It does explain, though, the sharp pain in my right chest yesterday and overnight. I assumed I had pulled a muscle from my violent coughing. Turns out it was a blood clot!
What’s next? Honestly? No clue. I do expect to talk to the doctor about it tomorrow, as a note at the bottom of the scan report said, “Discussed with Dr. Rybka at 6:30 pm.” I’ll keep you posted.
July 26, 2018 Thursday
This was supposed to have been finished and sent out before now. I’ve just been too exhausted and occupied with doctor appointments. I feel like I’m hardly making sense, but I’ll try.
Now, a summary since Tuesday. Wednesday, I went to Hershey for an ultrasound of my legs to make sure I didn’t have any more blood clots waiting to break loose. The test was clear, so the doctor thinks it’s more likely that the clots formed in the lung itself rather than in my legs. He prescribed me Lovanox injections (a blood thinner to reduce clotting). I had to do my first injection under a nurse’s supervision, so I went back to Hershey again today. I’ve given myself injections before, so it’s not a big deal. I’ll just have a black and blue stomach for weeks, even if I alternate sides every day! (Lovanox injections are given in the stomach. Swab the area with an alcohol wipe, pull off the needle cap, grab a roll of fat with my other hand, stick myself, and press the plunger! It hurts like crazy for about a minute, but that’s it.)
Today, I also discussed options with Dr. Rybka and signed papers to start a new treatment. We are going to try Revlimid in conjunction with Rituxan. I’ve not had Revlimid before, but I have had Rituxan. Neither are chemotherapy as any chemo is out of the question. Revlimid is not a new drug. It was first used in the 1950’s.
The generic name is lenalidomide, a form of thalidomide. Thalidomide is best known for causing a huge medical scandal in the 50’s, as it was prescribed to patients before thorough testing had been completed. It was often prescribed to pregnant women for morning sickness. That’s when it was discovered that a major side effect of the drug was birth defects. Babies were born very deformed, sometimes so severely they only lived a few minutes or hours after birth. It was after this that the rules regarding the testing of new drugs were developed and enforced to keep anything similar from happening in the future.
Revlimid is considered an immunotherapy. The medical field really doesn’t understand how it works though they do know what effects it has. It shuts down the growth of new blood vessels. Most tumors or masses create their own blood vessels to keep the cancer growing. If the cancer doesn’t have a blood supply, it stops growing. That’s why part of the mass in my chest is necrotic. It cut off its blood supply by its own fast growth
In addition, Revlimid stimulates the Natural Killer (NK) cells of the immune system to attack the cancerous cells. It also enhances the effectiveness of Rituxan which is why I will get both. Rituxan is an immunotherapy along the same lines as Mr. Brent, except it targets a different protein on the cancer cells. I’ve had Rituxan many times before.
The treatments will be a monthly cycle. The Revlimid is an oral medication, so I will take a pill every day for 3 weeks followed by one week off. Rituxan is an infusion or injection given every week for the first month and then once a month after that.
Rituxan has few side effects aside from a risk of an allergic reaction. I usually have a reaction the first time after I’ve not had it for a while. After that, it doesn’t seem to affect me much. Revlimid has side effects of fatigue, drowsiness, constipation, increased risk of blood clots (hence the continued need for the Lovanox), and neuropathy.
You might be wondering why we don’t just restart Mr. Brent. The reason is that Mr. Brent would probably not be effective enough. My last CT scan was June 7, which showed that the mass was stable. June 7 was also my last treatment of Mr. Brent. My next treatment would have been scheduled for June 28, but we decided not to do it. I first noticed my cough was worse barely 1 week later during the first week of July. For the mass to grow enough to cause me symptoms that soon means that Mr. Brent was most likely already failing. Stopping Mr. Brent is not what caused the lymphoma growth. Instead, it’s simply the nature of my beastie: he never stays controlled for long. We had stopped Mr. Brent mainly because of the neuropathy, and Revlimid has a risk of neuropathy too. Only time will tell if Revlimid worsens my neuropathy.
Will this new treatment hold the beastie at bay? Honestly, we don’t know. Using it for B-cell lymphoma is considered off-label usage, meaning it’s never been officially approved for B-cell lymphomas. However, Dr. Rybka said he’s used it in B-cell lymphoma patients and he’s seen some good results. Of course, the term “good” is relative. By “good,” we mean “keeping beastie controlled and me comfortable.” That’s all we can hope for at this point.
The doctor used the words “end stage disease” today. He’s right, of course. A friend had recently asked me if my cancer is terminal. I guess I had never spelled it out specifically in these updates. Yes, it is. The official definition of terminal cancer is “cancer that cannot be cured and leads to death.” Ever since September 2017, when I relapsed following my stem cell transplant, my cancer has been terminal. They have nothing to offer me aside from treatments that will, at best, hold the beastie at bay for a while longer. Without a treatment to hold it at bay, death is only ever about 3 months away. If Revlimid works, I’m hoping for longer than that. Only God knows. I never discount the possibility of miracles, but neither do I plan on them when God has given me no assurance that He will provide one.
July 28, 2018 Saturday
I need to finish this and send it before it gets too much longer. Which leads me to another important part of this post, something you all can help me with. I’m at the point where I’d like help every day. It’s getting harder and harder to function. There are 3 options I’ve thought of.
- Someone to move in with me. I will provide part of their room and board and they are welcome to have a full-time, part-time, or in-home job. I’d keep having meals brought in, but my roommate could help me with the myriad of other little things every day, as well as helping with bathing or other personal care. Perhaps a school teacher would like this arrangement if her workload isn’t too heavy? I’d help her grade homework for free! J(Goes without saying, I think, that I need a female roommate.)
- I move in with someone else. Preferably, I’d have separate or semi-separate quarters with someone popping in to check on me, run errands, help with self-care, and accomplish other little tasks. Once again, I’d still plan on having meals brought in. I’d pay them by paying for part of the rent and utilities.
- Someone simply to drop by and check on me twice a day and do any little things I need done: heat up meals, clean up the kitchen, get the mail, etc.
I do not need to know the person well beforehand. Hopefully, we’d “click” upon meeting, but even if we don’t, it’s okay. All we need to do is fit together reasonably well and communicate clearly when issues come up. I can work with nearly anyone who understands boundaries, communicates needs and preferences clearly and kindly, and is willing to work through conflict.
I am looking into other options as well. Paying a caregiver from a professional agency is out of the question. I can’t afford it. I’ve been researching some free cancer support programs, and the social worker at Hershey Medical Center gave me some good ideas. I do have some applications to fill out, so something might come of those. I am asking about hospice, but according to Dr. Rybka’s nurse I’d have to stop all treatment. That doesn’t make sense, as the research I’ve done on hospice indicates that cancer treatment is allowed while on hospice if it’s goal is to simply relieve symptoms and make the patient more comfortable. I’m going to need to have a discussion with the doctor on this.
How can you all help me? Keep your ear to the ground and contact me if you know of someone who might be willing/available for any of the 3 options above.
Does this email sound as unemotional as it feels? I’m too tired right now to really process any emotions. I’m just sort of numb, I guess, with just enough energy to focus on getting through the day.
I will leave you with some comfort from 1 Peter 1 that made me cry when I read it. I usually read the Bible in the KJV becomes it’s been the language of my spiritual journey. Something about its stately, somewhat musical language is comforting. However, I have other versions and paraphrases I use sometimes when I want more understanding. Occasionally, another version can make a verse I hardly noticed jump out at me because it increases my understanding. So, I am quoting this from The Living Bible.
“And God has reserved for his children the priceless gift of eternal life; it is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And God, in his mighty power, will make sure that you get there safely to receive it because you are trusting him. It will be yours in that coming last day for all to see. So be truly glad! There is wonderful joy ahead, even though the going is rough for a while down here.” (I Pet. 4:4-6)
- Enough strength to function.
- Comfort and peace.
- A caregiver/roommate to help me.
- That Revlimid would be effective in relieving my cancer symptoms.
I’m sheltered in the arms of God.