Treatment Details

I hadn't intended for so much time to pass between posts, but just like anything on this new journey, I'm learning there really isn't a hard timeline for things other than doctor appointments. So, let me catch you up.  (If this is more information than you were wanting, feel free to skim or skip this post.)

The month of December has been a whirlwind just like November was.  I had another biopsy on December 6 to determine my exact kind of  B cell lymphoma.  Chemo was scheduled for the following Friday, the 13th!  I'm not superstitious in any way, but I had to smile a bit at the irony when I realized the date.

Here is a quick, truncated, layman's version of Lymphoma.  Lymphoma is a blood cancer involving one's white blood cells.  The DNA of certain white blood cells (for me, lymphocytes) becomes damaged--most often randomly and due to environmental factors (rarely is it due to genetics)--and rather than the body correcting the abnormality, the damaged cells start rapidly dividing and accumulating or "piling up" in the lymph glands.  These are the cancer tumors that develop in the lymph glands.

I have been asked numerous times what, if any, symptoms I had been having. I didn't have any of the typical or classic symptoms of lymphoma:  weight loss, night sweats or fatigue. With me it all started with a dry cough in September that developed into fluid around my lung, which led to a Thorocentesis (removing the fluid), CT scans, more tests, biopsies, and here we are today. The fluid around my lung was collecting as a result of tumors in my lymph glands located behind my heart/lungs/liver.  I have an even larger mass throughout my abdomen, behind my stomach and intestines. In retrospect, for the last 6 months or more, I had been having bloating and stomach issues which I chalked up to food sensitivities, not being able to tolerate spicy things as I'm aging and so forth. All the pieces of the puzzle have come together.

That day I was to start chemo began with an early morning PET scan (7 AM) to get a good picture of all the enlarged lymph glands in my body.  As a side note, I am so appreciative of the science and technology we have access to.  How amazing is it that we have machines that can create 3 dimensional computer images of the inside of one's body that show cancer cells in technicolor!

Following the PET scan, my husband and I went over to my oncologist's office. There more lab work was done, and then a consult with my doctor.  She showed us the scan from earlier that morning, and we were left a bit speechless.  It wasn't  new news, and we had seen previous CT scans in black, white and gray, but to see cancer cells "glowing" throughout my body, some in very large masses (tumors), was sobering.  It was at that time that the doctor informed me/us that she wanted to admit me to the hospital for the first round of chemo so that I could be monitored. This was a surprise to us, but evidently, this is not unusual for the kind of chemotherapy I am receiving.  The first session can take a long time, and it is not unusual to have some kind of reaction.  The other concern was that because this chemotherapy is so effective, and I have such large/multiple tumors/masses, the tumors would collapse too quickly releasing high levels of toxins into my body, which can create other issues.  So, while I adjusted to a 3 day hospital stay, I was thankful I would be in a safe, protected environment where I would be monitored and taken care of  'round the clock.

After going from the doctor's office over to the oncology wing of the hospital and getting settled in,  therapy began. As things turned out, I did have an allergic reaction to the first drug (which is expected) so it took HOURS to get just this first element into me, and LOTS of Benedryl and Tylenol! This is a biological drug that prepares and breaks down the outer layer of the cancer cells so they'll be receptive to the other chemo drugs. Supposedly subsequent rounds should go more smoothly as my body will now recognize this drug and not fight it as much.   The other 3 chemo drugs, that target and kill rapidly dividing cells, were administered the following day, one at a time.  After more blood work, it was determined I was in good shape and was able to go home Sunday around noon.

The rest of each chemo regimen is followed up within 72 hours by an injection of medicine to encourage my bone marrow to produce more white blood cells,  (which produces muscle and bone pains) as well as a 5 day course of a steroid!  Add to that anti-nausea meds as needed, as well as Tylenol for headaches and aches and pains, and, well...it is a lot!

The first week following chemo is a blur to be honest.  Okay, make that the first 2 weeks! I was loopy from the drugs, Benedryl and anti-nausea meds. I  was pretty non-communicative during those 2 weeks as talking on the phone, doing Facebook or any other types of communication were fatiguing and thinking itself took so much effort. (My apologies if you sent me a message, email or text and I didn't respond...I was pretty out of it for awhile.)

I would have to say I didn't experience horrible nausea, but lots of intestinal pain and stomach pain which made eating difficult and greatly decreased my appetite. Some of the pains may have been from dying cancer cells which helped me mentally tolerate the discomfort, but the majority of discomfort and pain was from the 15 pounds of water that had accumulated around my body following the first round of chemo. My clothes literally would not fit!  Evidently, during my allergic reaction in the hospital, not only did I receive lots of Benedryl, but the nurses had administered a lot of saline as well as my blood pressure was dropping, along with my oxygen level. There isn't a lot I remember during that time, but my husband does!  It was a bit hairy and stressful. So, the water retention was due to all the fluids they pumped into me. Over the next week  I lost the water weight and then additional pounds as the tumors shrank and I lost additional fluids.  All that to say, my body weight has had a fluctuation of 25 pounds in a 2 week time!  That will reek havoc on anyone! (And I do not recommend this to anyone!)

 Another side affect I have encountered is fatigue.  My energy level comes and goes and truly is a day to day thing; every day is different. Evidently the fatigue will most likely become worse as treatment continues. (!)

The amazing thing about this therapy, is that I already can see a difference in how I feel.  The doctor had said I would probably notice a difference quickly, and I do!  Nothing short of miraculous.  My breathing is easier, and the pressure that I have had in my chest for months has subsided greatly to the point that I can lay flat on my back and actually sleep.  I have not been able to do this for months.  In addition, the uncomfortable bloating feeling has lessened. I still have compromised breathing in my right lung, and still notice some pressure there, but I'm so thankful for this ray of hope that I truly am going to feel better!

This third week after treatment has been the most "normal" so far.  My appetite returned Christmas day and I have been able to eat ever since.  I am no longer having bouts of  nausea and have been concentrating on eating healthy foods, rich in nutrients and calories, to build my body up prior to this next round of chemo that happens on Friday.

One not so "normal" part of this third week is the reality of losing my hair. The doctor told me this over 2 weeks ago. I cried at first, feeling afraid of the unknown and mourning the loss of what has been a part of  me all these years. I like my hair and have enjoyed its thick texture, slight wave and that I still don't have too many gray hairs at this age. It will be sad to see it go as it is almost given that my new hair (after chemo is completed) will be a different texture and color.

Today, this process has started in earnest as large clumps of hair now effortlessly fall out. I'll be candid and let you know I shed a few tears today.  It is all an adjustment at each and every little bend.   I'm getting there, and  will get there...I just need to work through each step.  The next big decision is whether I am a scarf, hat or wig gal.  I'll have to "try" them all on and see what suits me.

That should catch you up on things.  I'll be back with more ponderings of the heart, but wanted to catch you up on the details first.