For Real

I sometimes struggle writing this blog. Cancer is a ride that takes me through many twists and turns, ups and downs, highs and lows. Part of me wants to always be positive, look at the good and downplay the bad. At the same time, it wouldn’t be honest to do that. It would feel like a betrayal to myself and all other cancer patients to hide the real cancer experience. So, I’m not going to do that. But, I am going to start with the positive.

In April, I went to South Africa. It was a trip of a lifetime. There are simply no words to describe what it’s like to see animals in the wild. To be so close and observe their magnificence in their natural habitat is simply awe inspiring. I will never be able to enjoy a trip to the zoo ever again. I was never a zoo fan to begin with, but this sealed the deal. Not only did we do the safaris, but we spent time in Capetown and went to Victoria Falls on the Zambia/Zimbabwe border. I had only dreamed of visiting such exotic locations and to actually do it…….sometimes I feel like it must have been a dream.

After I returned from Africa, it was time to face the music and figure out what was happening with the cancer. I was scanned on April 30th and the news was not good. Definite progression this time. Three new vertebrae and a spot on my left arm. At least there was no question that it was time to move on. But, moving on was a real slap of reality. IV chemo once a week, every week, indefinitely. I had another trip coming, so they wanted to get things started and get a few treatments under my belt before I left. In a matter of three weeks, I had three IV chemo treatments, lost my hair, had a port surgically placed, and prepared for another major trip.

Chemo 1, some pretty major fatigue, followed by some major back pain. Pain as in can’t sleep, taking the narcotics, lying in the fetal position waiting for it to kick in kind of pain. I was x-rayed and no source of the pain was discovered. It did slowly improve….thank goodness.

Chemo 2, muscle aches. I felt flu like and again, pretty lethargic.

Chemo 3, nausea and stomach upset, along with hair loss. I was also quite upset when after having my port placed, they decided it couldn’t be accessed because of possible infection. I was so looking forward to NOT being stuck and having the IV, only to be told it was “on hold” until I complete a course of anti-biotics.

And then it was time for my trip to the Baltics. I know I said chemo would be once a week, every week, indefinitely, and it will be…..except when I travel. My doctor knows I have some pretty lofty travel goals and that those will always come first, as long as I’m well enough to fulfill them. She is in complete agreement. So now I know a sure way out of chemo is to plan a trip!

My trip was incredible! I absolutely loved the Baltics. St. Petersburg, Russia is by far, the most beautiful city I have ever seen in my entire life. It was unreal. Everywhere I looked there was unbelievable architecture, picturesque scenery, and unrivaled history and culture. I was in awe. We also visited Tallinn, Estonia, Stockholm, Helsinki, and Copenhagen. Not to mention our days in Amsterdam and Belgium prior to the cruise. The weather was wonderful and I saw and experienced so much! I consider myself so lucky!

I returned on June 13th and it was back to chemo just a few days later. As I write this, chemo was three days ago. Today has not been a great day. I’m tired and for whatever reason, my leg hurts. That’s the fun thing about cancer in your bones, pain seems to randomly come and go in weird places. The good news is they were able to access my port this time. On Monday I go in for blood work and Tuesday I get another treatment.

My doctor asked me how I was doing and I told her that I feel like this cancer stuff is “for real.” It’s harder to ignore or bask in denial when I’m being treated every week, dealing with chronic pain, and managing a new slew of side effects. It’s also hard to look when I pass a mirror and see Uncle Fester staring back at me. I’m not a vain person, and I know I should feel lucky to be here…..with or without hair, but sometimes I just look at myself and want to cry. I had to have a new passport photo taken today and it just kind of broke my heart to compare it to my picture from 10 years ago. I’m pretty much unrecognizable, and truth be told….it hurts. Who knows if I will ever have hair again.

My next scan will be around September. Hopefully we will see some improvement, or at least stability. Hopefully my body will adjust to the new chemo and side effects. Hopefully I will get to continue traveling and spending time with my family and friends. While I feel it getting harder, I don’t think it’s time to throw in the towel just yet. I’ve got a lot more to see and do. I try to set small goals and big goals. When I was first diagnosed terminal, I just wanted to live to see my son graduate high school. Now, with a little luck, I may actually see him graduate college! It’s not too far away. And in a few weeks, guess what……..another trip. Just a short one this time, to New York City. But, I’ve never been and I’m very excited to see it. I think my travel plans really help to keep me going through the treatments.

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Realistic Optimism

My January Pet/Ct scan came back as a “mixed bag.” Overall, the cancer is stable, except for 2 spots in the lower pelvic region that progressed. One progressed in both size and activity. The other progressed in activity only. These are perhaps the most difficult scans to deal with. The options: 1) Do nothing. Stay the course and see what happens. I’m not usually a “do nothing” fan. I’m more of a proactive kind of person that likes to address issues before they become bigger. 2) Call it progression, ditch my current chemo and move on to the next drug. The problem with this option is that I am at the threshold of IV chemos. IV chemo meaning, have a port placed in a major artery, go in once a week, get an infusion, lose my hair, etc. Certainly not fun, but something I always knew was coming. 3) Radiate the two problem areas, stay on the current oral chemo, and re-scan in a few months. This way, if there is truly progression, we will see it in other areas. With my oncologist on maternity leave, I consulted with the radiation oncologist and chose option 3.

Back to radiation I went. Radiation does not hurt while you’re receiving the treatment. It is pretty easy. You lay there, very still, while a huge machine rotates around you. They first take x-rays to insure you’re lined up correctly and the dose will be delivered to the right spots. I always know when the dose is being delivered because there is a very distinct buzzing sound. The techs come in, help you get off the table and off you go. Rinse, repeat for however many days/doses you’re getting. This time it was five. They tend to do 1, 5, or 10 in cases of cancer that has spread. Early stagers (which it’s been 18 years since I qualified for that category) get 35-40 daily treatments. But in early stage, the goal is still to cure the cancer. In my case, they’re not looking to cure anything. The idea is to control symptoms, and prolong life. I thought I had escaped my latest round of radiation side-effect free. But, unfortunately, about 10 days after finishing, I developed a very painful sunburn in the pelvic region. I won’t get graphic, but this is skin that doesn’t see the light of day much anyway. It was so painful! It blistered. It peeled. I had to go commando for a couple of weeks. I was quite happy when it was resolved.

My oncologist returned from maternity leave in February. She agreed with my decision and we scheduled another Pet/Ct for the end of April. So, I bought myself at least 3 additional months of oral chemo. I hope for more than that, but if there is clear progression in April, it will be time to switch. I leave for South Africa at the end of March for two weeks. I’m so excited as this trip has been on the calendar for a little over a year. I don’t suspect I’ll ever be able to afford another South Africa trip, so this really is a once in a lifetime event. I’m lucky that my doctor supports my traveling and is willing to work my visits and treatments around my trips, but that will become more difficult if I have to go in once a week.

I am trying to be “realistically optimistic” about the situation. Realism is necessary in accepting this bullshit diagnosis, for lack of a better term. You have to accept that there is no cure, treatments suck, side-effects are numerous, and you’re never going to be done with treatment……at least until you die. The optimistic side is the fact that I am now over the 7 year mark of survival. At diagnosis, I was told 3-5 years is the average. I’ve managed to avoid the IV chemos for these 7 years, which is rather remarkable. And, I am maintaining a decent quality of life. I won’t say it’s always easy, but I’m still able to work part time, travel, socialize, and keep checking off all of those items on my bucket list. Realistically, I know it will end at some point, but optimistically, that point is still years away!

I’ll post an update after my trip and my next scan! Fingers crossed!

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Random Thoughts

Today is my 46th birthday.  Birthdays have a different feel since being diagnosed as terminal. You can’t help but wonder if it’s your last one. Some people feel sad as they get older, but I can only describe each birthday as a sense of relief. Relief as in “I made it!” I think about the people I’ve lost and how old they were when they died. While many of them died young, I still hope to live as long as they did.

This past year has been one heck of a ride. So many ups and so many downs. I gave up a career I loved, but traveled to so many incredible places. My mother’s health has not been good, yet she is living with me so  I can be with her. I started chemo with many side effects, yet the cancer has remained stable. I lost another friend to cancer in November, yet was so fortunate to have spent time with her despite the fact we lived 9,000 miles away. I think life is probably like this for just about everyone, cancer or not. We treasure the good, get through the bad, and try to catch our breath in between.

This year I found myself in England, Spain, France, Italy, Vatican City, Greece, Monaco, Malta, Panama, Colombia, Guatemala, Costa Rica, and Mexico. I loved the different languages, cultures, customs, scenery, and adventures. I learned more during my travels than I could ever learn from a book or a website. However, despite all I learned and all the differences, what struck me most is how similar people really are. I can’t explain why but I can say that I feel a much stronger connection to humanity as a whole. The human experience is universal in my opinion. And this is what drives me to continue to travel and experience new places and new people.

People say that transitioning to retirement is hard. The lack of routine, purpose, activity can be hard for some. I, however, can’t say that I ever find myself bored. In fact, I’m not sure how I ever held a job. There are so many things I had hoped to accomplish…..organizing the basement, catching up my scrapbooks, cleaning the house, volunteering, etc. Some of the projects have been started, but time just gets away from you.

Tomorrow is my 6 month PET/CT scan. Sometimes I have a good feeling about them, sometimes I have a bad feeling about them. This time, I have no feeling whatsoever. I really don’t know what to expect. I feel good, other than the typical side effects from the chemo. The results will be what they will be. Of course I hope for stability or improvement, but if it’s progression, I will deal with it.

I have a lot of hope for 2019. I hope to complete my planned trips. In April we are scheduled to go to South Africa. In June, the Baltics. I’m so looking forward to these trips. Areas of the world that I thought I would only dream of visiting. I’m also looking forward to seeing my brother in a couple of weeks. I’m hoping for more time substitute teaching. I miss the kids so much. I hope to accomplish some of these projects that I started. I hope for more time with friends and family. Most of all, I hope my health remains stable.

I also hope to update my blog more often. Again, one of those intentions in retirement that goes by the wayside.

I hope everyone has a very happy 2019!

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I Used to be…….

I used to be a teacher. I used to be a teacher. No matter how many times I say it, I can’t seem to get used to it. These last few days of my teaching career have been pretty emotional. I am so sad to be giving it up. I love teaching and I love the kids. Physically, I’ve been ready for awhile. Mentally and emotionally I’m not even close to ready. I feel like it’s the right decision, but that doesn’t make it an easy decision.

Here is what I WON’T miss………………

Getting up at 5:30 am.  Not being able to go to the bathroom when I need to go. Grading huge stacks of papers. Staff development that does not do much to develop my teaching ability. Spending hundreds of dollars of my own money on classroom supplies. Fighting politicians who refuse to listen to teachers and do what’s best for kids. Scarfing down my lunch in 30 minutes or less. Working when I’m sick because writing sub plans is too much trouble. Planning possible escape routes out of my room in case of an active shooting situation. A confusing and arbitrary teacher evaluation system. Standardized tests. Worrying about my students’ mental and emotional health, home situations, etc. Not being able to sleep as I think about how much grading I have, how many lessons I have to prepare, how many meetings I have to attend……………….

Here is what I WILL miss………………..

The excited chatter of a room full of teenagers. Waves, high fives, hugs, greetings from my kids. Notes of thanks and tokens of appreciation. Seeing the kids achieve academically, athletically, socially. Watching a shy, awkward freshmen grow and develop into a strong, confident senior. Visits from past students. Intellectual conversations with colleagues. Fun, outrageous and not-so-intellectual conversations with colleagues. Friday afternoon socializing. Being a part of a team. Having a “work” family. Putting together lessons that are engaging and effective. Homecomings, sporting events, spirit days, proms. Snow days. Planning periods. Collaboration. Starting a new school year each August. Reflecting on the past school year every May. The eternal optimism, energy, and enthusiasm of youth.  The laughter. The celebrations. Teaching a content that I’m passionate about. Feeling like a contributing member of society. Having a routine. Knowing that my work is important and really matters. Shaping and having an impact on the future.

When last I wrote I had just started my new chemo regimen. It’s tolerable, but side effects are a battle. I’ve dealt with fatigue, hand/foot syndrome, a few mouth sores. I take the pills for two weeks and then take a week off. In February, a scan seemed to indicate that the medication was working. Most spots were stable or had shrunk. One rogue spot had grown slightly. We will scan again toward the end of July.

My hair has still not grown back from the radiation in September. My radiation oncologist said it may never come back. Other patients say it will but it takes a year or longer. I was hoping to have some hair for the summer, but it’s not going to happen.

I leave one month from today for a dream trip to Europe! Finally, I get to see some of the amazing places, ruins, and artifacts that have been a part of my curriculum for so many years. I will visit London, Barcelona, Monaco, Florence, Rome, Athens, Mykonos, Santorini, Malta, and Paris. I can’t begin to express how excited I am.

And so begins my life of early retirement. I’m so lucky that I’m able to do it. However, I would gladly trade my early retirement for my health plus another decade of teaching. My career is not ending when and how I wanted it to end, but I plan on making the absolute best of the situation. I will have to get used to saying, “I used to be a teacher.”

 

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From Thriving to Surviving

I’m not going to lie. The last 4 months of 2017 were rough. Radiation to the head is no joke. The fatigue was rather debilitating and losing 3/4 of my hair was an emotionally tough blow. It’s one thing to know you have cancer. It’s another thing for everyone else to know. It’s not as if I am particularly private about my diagnosis, I mean I am sitting here blogging about it! But walking around and having the whole world know, whether I want them to or not, is hard. I know I could wear hats, scarves, or wigs, but they’re all very itchy and uncomfortable. If there is one thing I don’t need is to voluntarily add to my physical discomfort. So, since the beginning of October, I’ve faced the days bald. The up side is I’m saving a ton of money on haircuts, coloring, and shampoo and styling products.

As soon as radiation ended, I began a new cancer drug combo Aromasin/Afinitor. I was warned about Afinitor. Apparently, it can cause some pretty mean mouth sores. So I prepared. I took everyone’s advice. I bought the expensive mouth wash and put the pills into gel caps to keep them from contact with the inside of my mouth and throat. The result? NO MOUTH SORES! I celebrated my successful avoidance of the nasty side effect! Other than that, some fatigue but otherwise not too bad. The best news came on November 6th when a PET/CT scan revealed the drugs were working. My tumors were smaller and less active than the scan at the end of July. Things were looking up!

On November 17th, we closed on our new house. Life became pretty busy. I was juggling work, moving, cancer, a new pet (our rescue kitty-Hazel), and I was tired! At a routine oncologist appointment I decided to be a good patient and get a flu shot. My reward for being good was a nasty infection at the injection site which required a nice week long course of antibiotics for Thanksgiving.

Things really went downhill health wise in December. I developed large, red, painful bumps on my scalp. I went to see my oncologist and she diagnosed it as foliculitis. Another fun side effect of my drugs. A topical antibiotic was prescribed. Turns out that mouth sores and foliculitis  are not the only side effects from my new drug combo. Blood work revealed sky high blood sugar levels and liver enzymes that were more than 4 times higher than normal. My oncologist had me stop taking the Afinitor immediately until my blood work normalized. It took a couple of weeks, but things normalized and now we had to make a big decision. She said we could try the Afinitor again at a lower dose or move on to the next option which is a drug called Xeloda-an oral chemotherapy. After some painful deliberation, we decided to move on. The deliberation was painful because it’s hard to give up a drug that you know is working. However, the toxicity and risk to my internal organs was just not worth it. So moving on to Xeloda.

One more fun little side note for December…..I came down with the ear infection from HELL! Seriously, I felt horrible. I had vertigo, stabbing pain in my ear, my eye was swollen, and of course it spread! The first antibiotic didn’t help. I then received a shot of a strong antibiotic and a new oral one as well. When even that wasn’t helping, I ended up in the ER and threatened with hospitalization if the infection had spread into my eye or my mastoid bone. Luckily a CT scan showed that it remained “pre-septic cellulitis” and I was not hospitalized. I literally crawled into school those last few days. I wasn’t sure I was gonna make it! But I did. I had never been more thankful for a break to arrive!

So on December 28th I started the Xeloda. Possible side effects…..too many to list! But it doubled the number of pills I am taking per day! I’ve been tired, had some mild nausea, and stomach upset. This drug is two weeks on, one week off. I’ve been warned about the major side effect, hand/foot syndrome. Apparently, the palms of my hands and soles of my feet could become very red and burn, maybe even blister. The skin could peel off and it could be quite painful. It sounds like very few patients escape this, but it does take a couple of cycles for it to kick in. Something to look forward to for sure.

Prior to this tumor on my head, I would tell people that I am not just surviving, but thriving with my cancer diagnosis. I fear it’s changing. I’m still surviving, but I no longer believe I can use the word thriving. Each day is a bit of a struggle, some days are worse than others. I’m going to try to make it through the semester, but I will have to call it quits at that point. I just don’t have the physical stamina to teach for 8 hours a day. It’s really hard for me to give up teaching. I still love it. I think I’m still good at it. I’ll miss the kids, I’ll miss my colleagues, I’ll miss feeling like a contributing member of society. I suppose I should feel lucky that I’ve managed to continue for 6 years post diagnosis, but it’s still a huge blow. I know it’s the right decision, as I may actually survive a little longer with less stress and more time to focus on my health, but it will be the hardest thing I’ve ever done. I hope I can get through the semester and cherish these last days of my career.

Happy New Year to everyone. I wish you all a year of health and happiness!

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The Other Shoe

When Nick was a pre-schooler, I remember reading a specific book with him that viewed many English colloquialisms through the literal mind of a child. The main character was a little boy who was very concerned when his father expressed that purchasing an item had “cost him an arm and a leg.” The boy imagined his father with only one arm and one leg. He was very confused when his mother told him a secret and then said “don’t spill the beans.” Of course the boy imagined tipping over a jar filled with beans. It was a wonderful book and I doubt Nick, at the age of three or four could truly appreciate it’s humor. However, I found it very entertaining………at least the first 40 or so times I read it to him.

I remember a specific colloquialism that always confused me when I was growing up. I didn’t understand the meaning of “waiting for the other shoe to drop.” Of course I quickly learned that it meant the anticipation of a bad situation getting worse. Today, I feel like I understand it on a completely different level. I’m afraid when it comes to my health, the other shoe has dropped.

It started on the evening of August 31st. I came home with a bad headache. I didn’t think much of it until it woke me up in the middle of the night. For me, the “middle of the night” means about 11 pm. The pain was intense. I tried switching positions, getting a drink and taking some Tylenol. Nothing worked. I couldn’t sleep and the pain was bad. I began to feel nauseous. I reached for my stronger pain meds and eventually fell asleep. I woke up again around 3 am with the same pain. I decided not to take more pain meds as the alarm was only 2 hours away.

Standing up and moving around made the pain slightly more bearable on Friday morning. I went to work but knew I needed to call the doctor as soon as possible. I taught a class and then called on my break. I described my symptoms…….debilitating headache, slightly flu like feeling, and a sore bump on the top of my head. The bump has actually been present since Spring, however, the soreness seemed to come and go and the bump was hardly even noticeable to anyone but me. Remember my main focus for the past 8 months has been the pain in my legs. My oncologist was not in that day, so the nurse had me see Dr. S. He is the one I had seen this time last year while Dr. L. was on maternity leave.

Mark and I spent about 15 minutes with Dr. S. kicking around the possibilities of what could be causing my pain. The obvious first choice when you’re sitting in an oncologist’s office is cancer. But, Dr. S. examined the area of concern and really thought it was unremarkable. He said skull metastases usually were more pronounced and skin metastases usually meant some discoloration. An infection seemed unlikely but a possible reappearance of shingles wasn’t ruled out. Bottom line, we needed to see what was going on inside my head so he sent me downstairs for a CT Scan. I was very lucky they were able to squeeze me in on a Friday before a three day weekend.

The scan was a horrible experience despite having taken pain meds right before it. It took four attempts to get into a vein since the first three veins blew up. I now look like a drug addict, but the scan did happen. We were sent back upstairs to oncology and told that Dr. S. would meet with us when he got the results. We ate lunch and headed back to oncology. I think we waited about an hour when Dr. S. appeared and we followed him back to a vacant room.

The CT scan revealed a 7.5 centimeter tumor on my skull and dura. The dura is the protective layer between the skull and brain. In the world of cancer, 7.5 centimeters is pretty big! Tumors of that size do not just appear overnight. I asked why the tumor would not have shown up on the PET/CT scan I had on July 31st. Turns out that the scan on the 31st only went to about my chin. Yeah, I was shocked by that. I really thought my head was part of the scan.

Dr. S. said that I needed to be seen fairly quickly in radiation oncology as the tumor is close to some important blood vessels and of course the size is of concern as well. It’s hard to describe the shock. After dealing with this crappy diagnosis for over 5 years, I really felt like I was prepared for anything. Each and every scan I prepare to hear that the cancer has spread to my liver or lungs. The brain is always a concern as well, but it’s less common than other organs. Dr. S. made it clear that they do not believe this is in my brain. It’s on/under my skull. While that is a relief, I still feel like I was caught off guard!

So it’s back to radiation. The new meds I’ve started will hopefully begin to fight the cancer systemically, but they usually take about six weeks to really build up in your system and begin doing their job. Dr. S. said that we really can’t wait that long.

I’m not a radiation newbie, but, radiation to the head can be a little more difficult than radiation to other areas. We met with a radiation oncologist, also a Dr. S. on Thursday September 7th. He laid out the options, even though I knew what I wanted to do. I just can’t risk being in that kind of pain again if it can be avoided. So, I made arrangements to go in the next day for a simulation and to have a mask made. The mask is necessary to hold your head immobile while they deliver the radiation.

Dr. S. is supposed to call on Tuesday and give me a start date and time for the actual radiation. It is likely to be 10 treatments. Side effects are mainly scalp irritation, fatigue, and hair loss. He seemed nervous to mention the hair loss, but in the large scheme of things, that’s the least of my worries. I just want to get this done and kill the tumor on my head. I was also sent for a brain MRI, just to confirm that the cancer was indeed on the skull and not in the brain. The MRI confirmed this.

Perhaps I have dodged yet another bullet, but after 5 1/2 years of dealing with this diagnosis, I do feel like the other shoe has dropped. I think it’s obvious that the cancer can be aggressive when it wants to be and grow fairly quickly if left unchecked. I’m still in a bit of shock over this. One minute you think it’s all under control and you start new meds with the hope of even further control, the next you’re being rushed into radiation to try and beat it back before it enters your brain! I can only describe it as absolutely shocking and surreal.

I’m going to try and work through radiation. I will probably do better and time will go faster. But I think I do have to think long and hard about continuing to teach after this year. I hate to give it up. It’s so much a part of my identity and I’m not sure what I will do otherwise. But, my cancer patient status in and of itself is slowly becoming a full time job. I also think that perhaps with less stress, maybe my time on earth can be extended a bit. No decisions have been made and I’m determined to at least finish out this school year.

I will keep everyone up to date on how radiation goes and I’ll be sure to post a picture of myself rocking the bald look!

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Plan E? F? G?

I’m not exactly sure what plan I’m going onto exactly, but I wanted to update everyone on the plan of action.

Clinical trials are on the back burner for now. There is only one promising one that is near me that I may or may not qualify for. They would have to send off a tumor sample to test it for a specific protein. This process could take a month, and then I may end up not qualifying anyway. So, I decided to stick with the tried and true for now.

Thursday, August 24th, I will begin a combination of drugs called Afinitor/Aromasin. It is still endocrine therapy, but the side effects can be very “chemo-like.” Just like any medication, however, it doesn’t mean I will get each and every side effect. The most common are mouth sores, lung damage, kidney damage, fatigue. I swear, it’s not the cancer that will kill me, it’s the treatment.

I saw a radiation oncologist on Tuesday last week. He recommended one treatment of high dose radiation to two separate spots on my pelvis. This will hopefully address some of the pain I’ve been having in my legs for about 8 months now. When you’re stage IV, radiation is palliative, not curative. I was very relieved that we could do it in one day. With school starting, daily trips to get radiation would have been quite inconvenient. He also said that if the pain does not subside, I could always come back and we can address some of the other spots at well. I liked Dr. S. a lot. It was hard not to go back to my beloved radiation oncologist at St. Joseph’s, Dr. J. He is, by far, one of the best doctors I’ve dealt with during this whole process. But, driving downtown everyday just wasn’t practical. So I was very happy that Dr. S. and I hit it off because the location is so much closer.

I will continue to get my infusions every 3 months. I see the doctor on September 21st and I will ask how long we wait until my next scan. If these drugs do not work, it’s time to move onto chemo. The first chemo I would start with would be Xeloda. It’s an oral chemo and a little kinder than the infusion chemos. So, fingers crossed, that these drugs work for a long time!

As always, thanks to everyone for your kind words and offers of support.

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