So What's Chemo Like?

Chemo is a strange beast and different for each type of cancer – different regimens, different side effects. For my non-Hodgkin’s lymphoma, I am taking a cocktail called R-CHOP for short.

Rituximab
Cyclophosphamide (Cytoxan)
Hydoxydaunorubicin (doxorubicin or Adriamycin)
Oncovin (vincristine)
Prednisolone

When I had chemo for breast cancer, I also had to take Cytoxan along with another drug called Taxol. Notably, several documents I have seen on Cytoxan mention that there is a risk, although rare, of later developing blood cancers, like leukemia or lymphoma. Although my doctors are hesitant to say there is a link between my previous treatment and my current cancer, I do believe it is a distinct possibility. When I told my oncology nurse that I had been treated for breast cancer three years ago, she said, “Oh, secondary cancer.”

My first round of chemo took about 5 ½ hours, primarily because the Rituximab can cause an allergic reaction and has to be infused over 3 hours or so. To combat the possible allergic response, I have several additional drugs to take. For the first round only, I had to take dexamethosone, a steroid, the night before and the morning of chemo. Then, at chemo I started off with Benadryl before the Rituximab was infused. As it turned out, in the middle of my infusion, my mouth started to itch. As mentioned in my previous post, Benadryl by infusion makes you completely loopy, and I ended up getting a double dose. Wow!

The rest of the drugs don’t take that long. The Cytoxan is also infused but the other two, the vincristine and the Adriamycin, are injected straight from a large syringe (into my PICC line also, so no poke with that). The Adriamycin is bright red and turns your urine a lovely pink shade for the rest of the day.

My friend Renee was with me as she was when I had breast cancer. She’s a real trooper, especially since I know she doesn’t really like medical stuff. Then, I stayed with my friend Marci and family for five days while I was recovering. Thank goodness for caring friends.

Recovery from chemo is also different for everyone even given the same type of chemo, mostly because there are some rare side effects that some people get that others don’t. My weird side effect is that a couple days after chemo my jaw started to hurt every time I took my first few bites of a meal. Since it is always just when I begin to eat, I believe it is really my salivary glands that are the issue. Strangely, it stops after about three bites, but the first few bites are in the pain category of 8 on a scale of 1-10. Luckily, there’s the internet, so I was able to research my chemo drugs and found out that the culprit was the vincristine. Painkillers are the only thing that the doctors can prescribe, although cold packs helped a little when my jaw felt swollen for a couple of days. I also got “Magic Mouthwash” from the doctor. I don’t know exactly what’s in it, but that helps a bit. I have gotten some good advice from friends on complementary medicine and I’m going to look into that, too.

Luckily, for the most part, I do not have any nausea, which most people consider the hallmark of chemo. They have great anti-emetic drugs these days. I get Zofran (ondansetron) in pill form right before my treatment and then I take Reglan (metoclopramide). I only felt a little nausea when it turned out that the three days suggested to take the anti-emetics wasn’t long enough. I have to take it through the following Tuesday (about 7 days). Every day I bless all those people who participated in clinical trials to help develop anti-emetic drugs.

One of the unpleasant things I deal with is giving myself a shot of Neupogen, which helps keep up my white cell count, every day for seven days following chemo. It’s not the worst thing, but the first time it took a while to work up the nerve. I guess I can count it as a new skill in my repertoire.

Strangest of all for me is just having to deal with the medical process as a whole when I have otherwise been so healthy. In the past 20 years, other than for general check-ups, I have only gone to the doctor three times – once for a severe sore throat about 12 years ago and the two times that ultimately led to a cancer diagnosis. I am definitely not a hypochondriac. I have felt unnerved by all the tests, hospitalizations, medications, and regimens. Sometimes I just feel fed up and think – I want to be my old self! But you can’t really be your old self ever again when you go through something like this. Hopefully, you just use what you learn about yourself constructively and appreciate all the care and kindness you receive from others.

Gearing Up for Chemo

The first part of chemo involves gearing up – mainly getting all the other pharmaceuticals that they prescribe you in addition to the chemo drugs and preparing yourself for the big day.

In addition to my chemo drugs, I was prescribed twelve (!) other drugs to take – three of which have to be started prior to chemo and one of which I have to inject. I knew about the injections, but I hadn’t been told about all the drugs I would be taking. I only realized at the pharmacy what I would be dealing with when the pharm tech said, “You want ALL of these,” and I saw the pill bottles pile up.

There are various drugs to deal with the side effects of the chemo or to help you from having an allergic reaction to the chemo drugs when they are administered. It’s such a large number of pills, each with different regimens, I had to sit down a couple days before chemo and carefully fill out my little pill box (another thing I had hoped would gather dust on my shelf). I still had to speak to a nurse by phone just to confirm everything. As someone who works in public health, I can’t help but think about the elderly or those with low literacy or language issues trying to deal with this. It doesn’t help that the doctor’s office and the pharmacy often interchange their use of the commercial and generic names for drugs.

The other part of gearing up is being prepared for the day. This is my list of things to bring:

· Snacks
My chemo treatments were scheduled for Wednesdays at 9:00 A.M. and they told me the first one would last until about 2:00 or so. Unfortunately, my infusion center is not one of the swanky ones that actually provide sandwiches and such. Juice, if you’re lucky. So, if you are ever preparing to have chemo or accompanying someone going through chemo, be sure to pack some snacks. In case you are wondering, unlike on TV, most people getting chemo don’t immediately start vomiting. You should get drugs for that.

· iPod
You may have TV to watch, but you may also want to just close your eyes and relax…I’ve made my own Chemo Mix

· Books or puzzles
However, these may go unused if you have any drugs that end up making you loopy…Benadryl by IV, given with some chemo drugs that may cause allergic reaction, is like three martinis! If you are accompanying someone, consider bringing something to entertain yourself in case your friend or family member ends up being a little incoherent.

· Pen and paper
For writing down instructions you are given for follow up care. Especially helpful if you are given these instructions under the influence of the Benadryl martini.

· Camera, if you want to commemorate the event

Poked and Prodded - Part Deux

One thing that has been so difficult this second time around is that my poor right arm is getting maxed out on jabs and pokes. When I had breast cancer surgery three years ago, I also had a sentinel node biopsy, which involved removing a couple of my lymph nodes under my left arm. A person who has had this procedure is at risk of developing lymphadema in the arm on the side where the procedure was done. It causes swelling that usually can’t be reversed and can be somewhat painful from what I’ve heard. Because of this I am not supposed to have any injections or blood drawn, or my blood pressure taken, from my left arm. So, my poor right arm has taken a beating with all the blood draws, IV’s, etc. And, one of my chemo medications may cause some damage to my veins, so I need a better solution.

There are options to getting a semi-permanent access to your veins while you go through chemo – either a port, which is installed under your skin near your clavicle and requires a brief surgery for placement. It does require some stitches that will leave a minor scar. Then you just have to be poked slightly to get it going and all blood draws, infusions, etc., can be done from that one site without multiple jabs. The other is a PICC line. This was not the favored choice by my oncologist, but it won’t leave a scar. I feel I have accumulated enough scars already and I would prefer to deal with the PICC line just to avoid the scar, even though it’s a bit more work to maintain it than a port. I guess I feel like it is one little thing I have control over when I don’t have much control over anything else.

Monday, I was supposed to have the PICC line installed at a general surgery site of my health insurance company. However, it didn’t take. They got the procedure started, but a clot developed in the vein they were using and they couldn’t go further. The little wire they use actually got bent slightly…yikes!

So I had an appointment at a local hospital to get the PICC line installed on Tuesday. The procedure took about 45 minutes and, I have to say, was not so fun. They start by numbing your upper arm in the spot where they will insert the wire to thread through your vein to the right atrium of your heart. I did not find the threading procedure too comfortable…I could feel it all the way up to my armpit but not after that. Once that was completed, I guess they must have threaded in the catheter. However, I wasn’t looking.

I recommend bringing an iPod for all such procedures. Much more soothing and you get to hear what you want instead of silence, or the technicians discussing what they’re going to do to you, or their not so spectacular choice of music.

So now that it’s in, it is actually a bit of a pain in the butt to take care of. I have to flush it each day with saline solution and heparin and I’m not doing such a spectacular job of keeping it dry. But I'll persevere.

I had my first chemo Wednesday and so far so good…more on that in my next post.

51 Days to a Diagnosis...or On Being a Pincushion

One of the things that is so difficult about any major illness, including cancer, is the length of time it can take to get a final diagnosis, the many procedures you may go through, and what seems like random guessing from medical professionals until all your test results come back. In my case, it was 51 days from the time I was told that I had a mass in my abdomen until I was given a final diagnosis of Stage IV Diffuse Large B-Cell Non-Hodgkin's Lymphoma.

1. April 1st - After X-ray at my doctor's office showed what may have been a blockage in my intestines, I was sent for CT scan at another location (icky crap to drink, zinger in my arm when they put the contrast in). Outcome: I was told there was a mass in my abdomen, that they suspected metastatic breast cancer, and that they may have to perform emergency surgery. It's hard to explain how it feels to be told you have metastatic cancer...


2. April 3 - While at the grocery, I got a call from the oncologist who treated me during my bout with breast cancer and learned how large the mass was (11 cm x 8 cm), discussed my BM's in the middle of the Natural Foods section (quietly, so as not to frighten the other shoppers), determined I didn't need surgery immediately but would meet with surgeon the following Monday. He thought it highly unusual to have breast cancer metastasis show up in my abdomen.


3. April 6 - Met with the surgeon who showed me my CT scan (interesting to see your innards). He thought it was not metastasis but most likely a Gastrointestinal Stromal Tumor or possibly lymphoma. He let me know that I was, in fact, "full of crap" at the time the CT scan was done because the mass appeared to be involved with my small intestines but was also pressing on my other organs, especially colon.


4. April 16 - CT-scan guided core needle biopsy - yes, it took 10 days to even get an appointment, good grief. I had to be awake in order to follow directions (holding my breath, etc.), so I was given both pain medication and a sedative. That didn't help much when they really got down to taking little nips of the mass - chu-chunk (this is the sound the seemingly spring-loaded needle makes when it goes in for a nip, of which they took three or so). Outcome - results didn't come back for several days and were inconclusive although they suggested a lymphatic process; oncologist wanted laparoscopic surgery to get larger sample.


5. April 27 - Had a meeting with the surgeon and he advised that instead he wanted to remove the whole mass with open surgery because the mass was involved with the small intestine, of which they would need to remove about 2 feet. Many cases of lymphoma don't require surgery but mine did because, if I had chemo first to reduce the size or eliminate the mass, it was likely that I would end up with a perforation of the intestinal wall...not good. He also let me know I would have a lovely vertical scar right up the middle of my abdomen. Sigh...no more bikinis. Surgery was scheduled for Thursday, April 30. More bloodwork for pre-admission.


6. April 28 - Ended up in the emergency room a little after midnight (technically, the 29th). I had held out for a long time with a mass that was already causing me pain, and I started having severe pains in my abdomen that wouldn't go away. Was in most of the night but they didn't admit me because they still didn't think that it was an obstruction.


7. April 30 - Surgery! Was in surgery by 7:30 AM and was finally in my room by about noon (I think). Generally speaking, I did well except the first night at about 1:00 AM when they decided my blood pressure was low and took me off the epidural pain medication I was receiving. They told me that I just had to use the pump, which I was supposed to push every 10 minutes. I thought, seriously, you don't really expect me stay up all night pumping my own pain meds after major abdominal surgery! Then the pump wasn't working and I had pain like a charley horse in all my abdominal muscles. I am no whiner, but it was awful. Thank goodness my friend Renee spent the night at the hospital with me and made sure I got the attention I needed. I don't know what I would have done without her. My mom stayed the next night and I was fine on my own after that. My brother had also come back with his girlfriend and so they helped out on the home front.
   
   I ended up being in the hospital for 8 days...so tiring. They continued to not let me sleep...ever! As they say, hospitals are no place for sick people. On an amusing note, the sign that the doctors were waiting for to indicate my small intestine was healing was that, ahem, I passed gas. They kept inquiring about it and one of the nurses asked me if "the condor had landed."
   
   The Surgeon came in the second day and told me he thought that, in fact, it was metastatic disease because he had never seen anything like it. A few days later, after some of the lab work had been done, he re-advised that they thought that it was lymphoma, although they were working on confirming the specific sub-type.
   
   So, over the course of 51 days, I went through thinking I had...metastatic breast cancer...gastrointestinal stromal tumor...lymphoma...metastatic breast cancer....lymphoma...
   
   While in the hospital, I did get some lovely gifts and visits from friends, in addition to my family being there for me...that really helped.
   


8. May 12 - I had an appointment with the oncologist for a bone marrow biopsy and lumbar puncture (spinal tap). Confirmed it was Diffuse Large B-Cell variety but, since I didn't have any other symptoms, he felt that it was likely Stage 1, which was good news. Bone marrow biopsy - ouch! No fun to have someone core into the bone in your pelvis and suck out some marrow (that hurts the most but, luckily, only for a few seconds). Having the spinal tap was comparatively a breeze, but I ended up having an excruciating multi-day "positional" headache (fine when I was lying down but excruciating when I sat up) and ended up in the emergency room again on May 15. I felt really bad for my mom who was up late again with me and then had to fly back to Phoenix on an early flight the next day. Also told that I would definitely need chemo, but possibly less than 6 rounds since it was Stage 1 and would have a dose-dense regimen every two weeks, so I would be finished by July. Leaving me a little hope that I could still start my Ph.D. program.


9. May 19 - Had a PET (positron emission tomography) scan that can detect other areas where there may be cancer. You have to be injected with a radioactive tracer and then put into a machine similar to a CT scan. Never a good thing to see someone inject you with something that they bring in a heavy metal container and when all but the business end of the shot is also encased in metal to protect the technician...hmmm...


10. May 20 - Had a MuGA (Multi-Gated Acquisition) scan on my heart. This checks if your heart is pumping well since one of the chemo drugs I will have has a small chance of causing heart damage (nice!). This involves having your blood drawn, a radioactive marker introduced into your blood (I'm glowing at this point!), and then the blood is reinjected. Then you put under a small machine to image your heart pumping (gamma camera...I got that from Wikipedia.


11. May 21 - Had visit with new oncologist to discuss results. Unfortunately, the PET scan showed that there were other lymph nodes, albeit fairly small, that were still affected. I asked about the staging and the oncologist advised it was Stage IV and that I would need 6 rounds of chemo at a minimum and possibly as many as 8. And the treatments would be 3 weeks apart rather than the dose-dense every two weeks...I'll have chemo until at least mid-September and maybe into October. So, I'll have to defer the Ph.D. program...I know my health is most important but it still sucks to have your life plans turned upside down.

So, there is my long tale on just getting a final diagnosis. For anyone who is supporting someone with cancer (or for health professionals), it's really helpful to be cognizant of how much someone has gone through just to get diagnosed. Sometimes it's quick...but often not.

Coming up...PICC line installation...

Well, the last time...

I have been given the (unique, unfair, life altering, etc.) opportunity to experience not one, but two cancers in three years.

In May of 2006, at the age of 39, I was diagnosed with Stage IIa breast cancer. It was a shock, as it is for most. There weren't any immediate family member with it, but that's true of about 90% of breast cancers, even in ones diagnosed in younger women. I had a lumpectomy and sentinel biopsy, four rounds of chemo with Taxol and Cytoxan, and 7 weeks (5 days a week) of radiation. In the words of late newspaper columnist Molly Ivins: "Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that."

I got through it all, with the help of friends and family, my hair grew back and, after a really stressful year at work in 2008, I was happy to start off 2009 with a change in positions and getting into a Ph.D. program in Anthropology at the University of Georgia.

But I had begun having some digestive problems in January...mostly just (ick) constipation. I was convinced I was developing some kind of lactose intolerance or some other simple thing, but at the same time had a nagging thought that something seemed a bit "alien" in my abdomen. I had a couple of severe bouts of stomach pain on a short work trip to Uganda in late March and, with some encouragement of a co-worker, went to a doctor when I returned. Truth be told, by that point I had felt something in my abdomen but assumed it was something that had to do with my colon, as in (apologies) hoping I was just full of crap. The doctor took an X-ray and could tell something was amiss as well as feel what could have been a mass. I was sent the same day (April Fool's!) to get a CT scan. It was about 4:30PM when I finished. The CT tech and doctor didn't say anything to me, just that they would give my results to my doctor. But I had a sinking feeling when I saw the look on the tech's face as she handed me the CD-Rom with my scan on it.

I decided that I would just go out to dinner and relax. Before my meal arrived I got a call from my doctor. I told her to go ahead even though I wasn't at home...bad news...they found a mass and believed it was metastatic. For a few moments after the call I was numb and even took a few bites of dinner while I waited for my check.

...Cutting to the chase, and more discussion of the joys of waiting around to be diagnosed for another post, it wasn't metastatic. Instead, I have been diagnosed with Stage IV non-Hodgkin's lymphoma. A not too common event for such a recent survivor of another cancer. I'm now in the unenviable position of recovery from surgery and moving on to chemo treatments...and, unlike many, keep finding myself saying, "Well, the last time..."

Just to note: I want to say thanks to my family and friends who have been helping me through this. I've started this blog to keep family, co-workers, and acquaintances updated. You all help me so much just by being there.