We self-published our journey of having cancer 4 times in 7 years. It's titled "My Rhonda: Emails from the Hospital ". Even though it's available at online retailers, we prefer to send it free to cancer patients.
If anyone would like a copy, contact me on Facebook at My Rhonda Emails from the Hospital and leave your postal address in a private message. It is in paperback form. For a download, it would need to go through a retailer. To date, we've given away over 650 absolutely free worldwide.
That's how I view the purpose of this roller coaster of cancer: shedding the rough edges. All cancers are non-discriminatory. Just sitting in a room waiting for chemo treatment, one sees people from all walks of life, all income levels, all races, etc... With cancer, the playing field of life is leveled. We're all the same. There's no room for pride, status, preferential treatment; we're all equal, just doing what we can to survive. Suddenly I had to learn to let others help me (no room for pride) and do my best to still reach out to others. "I can do it myself" suddenly became impossible.
In February 2009, during my yearly checkup, I mentioned to the doc that I was having much less energy than usual. I really thought my thyroid meds needed to be tweaked and that I would be okay. My husband and I had been running three miles a day, but lately this got increasingly taxing and left me worthless for accomplishing anything else. When I asked to have my thyroid levels scrutinized beyond the yearly test, this is the reply that echoes in my mind just about every day: "I just had this same conversation with a patient down the hall. We're not going there. It's just your age." Wow! Was I put in my place! I was trying to relate that I needed help and was told I'm like all patients and just getting old... at the age of 45.
During the week before Memorial Day weekend 2009, I started having abdominal pain which made it impossible to recline at night. I could not find a comfortable position, so I tried sleeping in a chair for three nights in a row. The whole time I thought it wasn't anything serious and would take care of itself. On Friday of that week, the thought of going through a holiday weekend with no relief was more than I wanted to endure so I called the clinic, (the one that told me I was just getting old). I knew that being a new patient anywhere else would keep me from being seen that day. What a miracle: I found that my doctor was out for the day, so I'd have to see her associate.
Her associate was so thorough and took me seriously! He asked a myriad of trouble-shooting questions followed by asking for a urine sample. When he saw the test results of that, he knew something was way out of kilter. He immediately called to the hospital and arranged for a sonogram, still not sure what was causing the pain.
My husband left work early that day and accompanied me to the sonogram. By the time we got home from the sonogram, the doctor called again and said to pack and head to the hospital. He said the gall bladder needed to be removed, and he also said that he thought there might be more to it but they didn't have enough info at that time. Finding a receiving doctor at a hospital on a holiday weekend is difficult, but he managed to find one.
Unfortunately for us, the docs at this small-city hospital were not able to help us much. The first order of business was to put in two stents to relieve the pain I was in. The pain was truly a 10 on a scale of 0-10. They didn't seem concerned about the gall bladder at all. They were running a myriad of tests. We kept asking when the gall bladder would be coming out, and they kept telling us they needed to understand the whole problem before discussing this. The doctor at this hospital was unsuccessful at placing the stents. By this time we'd already been there for several days, but the pain meds were amazing!
They transferred us to their parent hospital at the big city near us. Within twenty minutes of arrival, a doctor had inserted the two stents and finally we could move on to other questions. Three weeks after the clinic doctor's office visit and sonogram, we were finally allowed to leave the hospital. They had sent tissues to the lab three times during our hospital visit. Each time it returned with the news of pancreatic cancer. They still had not removed the gall bladder, but at least now we had a plan: attack the pancreatic cancer with six weeks of 24/7 chemo, simultaneous with six weeks of radiation, followed by surgery to remove the gall bladder and perform a Whipple surgery where they remove part of the pancreas, part of the stomach and possibly part of the intestines and get "rewired"/resectioned.
We didn't waste any time at all. I had never been a smoker or drinker and was quite confused that I could be experiencing this. I even had yearly checkups! The shock lasted a few weeks, but again, the pain meds kept me feeling pretty good. We sought treatment immediately with the doctors who agreed to take our case.
The chemo was in a pouch I wore connected to my port that had just recently been installed. I wore the pouch 24/7, even during a shower. It just had to be covered in plastic wrap first. The chemo caused menopause to set in and the chemo also caused MUCH nausea and took away any sign of an appetite. Things either tasted like wax or sawdust. The ONLY things I could tolerate were cold and/or fruity things, such as ice cream or fruit smoothies/lemonade, etc. Strength and weight went downhill rapidly and I basically felt like a vegetable and wanted to give up.
When the treatment was over, we waited til late September for the surgery. Mom had come out during the initial hospital visit and came out again to help run the household (and love on my kids!!) during the surgery. We witnessed quite a miracle on the day of the surgery. When the surgeon was finished, he talked with the family and told them that the tumor in the pancreas had gone from the size of an egg to the size of a pea... and it was completely deadl. They removed the gall bladder and the dead pea-sized tumor, and part of the pancreas. They did not have to remove any part of the stomach. The doctor considered it a miracle. He'd never seen results like this. We stayed in the hospital for three weeks for a very difficult recovery period.
The results were so good that the doctors went back to the drawing board. When we went for a follow-up appointment in November we were dumbfounded with the news we received. They were rejoicing; we were not. It turned out that the pancreatic cancer was a misdiagnosis. Because of the rare way the tumor reacted, they were now convinced that it was lymphoma in the pancreas (and a few other areas). We thought we were done with treatment. We did NOT want to start again.
The doctors assured us that this was great news because lymphoma was curable whereas pancreatic cancer usually recurred eventually. They said my prognosis was much better with lymphoma. We started a different chemo, lost all my hair, donned many hats and made the most of it. This chemo seemed to be much more nauseating and we brought mom out again. My mom came to take care of the two kids still left at home and to also use her training as a former nurse to help with my care. She put protein powder in ice cream and would make me eat a few bites every hour on the hour. We were to receive an infusion of chemo every three weeks for a total of six treatments. This would take us to mid-February 2010.
A week before the last treatment, I felt too weak for a shower but was too stubborn to wait. During the shower, I could feel what little strength I had leave completely. I called for my husband and he came right away. Thankfully he was just in the next room sitting on our bed. I didn't know how to relate to him what I needed. I couldn't think or communicate effectively... and he had no idea why I had screamed for his help. At that moment I passed out and landed on the shower floor. We have a very small shower, and even with the shower door open, there was not room for the fall.
During the fall, I broke my right foot in seven places but didn't need surgery. What a praise for no more surgery!! I was immobile for four months and wore a "boot" waiting for the bones to heal. The chemo had left me very weak and prohibited quick healing in the foot. Permanent nerve damage is in both feet and it is still difficult to get to a standing position and walking still is awkward, but I'm walking again, up to three miles at a time... but not very often.
The last chemo treatment was on February 15, 2010. Ten days later, during our follow up visit, the doc put us in the hospital because I had a fever and the white cell count was non-existent. What a blessing that was! Little did we know how weak I was. That same day (or the next day... I can't remember), we were rushed to ICU where we stayed for five days or so. During that time, they attached something to my neck for rapid blood transfusions. They said the port wouldn't allow the transfusions quick enough. We had maybe 6 or more blood transfusions and finally turned the corner. In early March we finally got to go home, knowing that all treatments were behind us and we could finally concentrate on getting better.
I can't describe how weak I was. The wheelchair was a mainstay for several months, and I rarely made it out of bed for more than a few moments. At the end of May, one of my daughters graduated college. It was about two hours away and we managed to make it to the ceremony. Such tears of victory were unstoppable! I was so glad to be there and so proud of her that she finished in spite of all our family had been enduring.
Little, by VERY little, strength started to return. I had gone from 145 pounds down to 100. Rebuilding strength was a battle every single day. In June, the bone doctor finally released me from my "boot" so that I could resume walking. There are no words to describe the weakness. With the weakness came emotional struggles. What a journey each day had become. My faith in God, along with my amazing husband, made it possible to overcome and make it through each day. It had been one year since the journey had started and we were thrilled to finally be without chemo.
We kept up our checkups every four months. These checkups included labwork and scans. We were enjoying the good news at each checkup, along with the joy of getting my hair back and limited energy. One day in December, I actually woke up feeling strong and decided to try and get a small grocery run done. On my way out the door, the phone rang and it was the oncology nurse stating that my appointment we had a week earlier was without all the info available. We'd had two scans done, but only one was available during our appointment.
She said we needed to come in that day. Needless to say my husband came home work immediately and we went for another appointment. The cancer had returned and he was referring us to another doc. The uncharacteristic demeanor of our usually very-cheerful-nurse told me that this was not good.
After two more biopsies and a consult with the new doc, it was confirmed that I have follicular non-Hodgkins lymphoma. At this time it is not curable, BUT is highly treatable. In December 2010, when we found out it had returned, it was very small growth in several areas and was listed as a stage 3 just because of the multiple locations. We are in a "watch-and-wait" mode. No treatment is needed at this time. The most recent scan shows very little growth since December. If/when treatment begins, it will not be chemo or radiation... praise the Lord, literally... but will be a hormone infusion. He said we could be watching and waiting for many years without treatment.
My take on the last two years is that we did start out with pancreatic cancer. I believe that God turned it into a more manageable disease of lymphoma. The original labwork came back three times as pancreatic so I do NOT believe that it was a misdiagnosis.
At this time, I am up to 120 pounds and gaining strength every day. My emotional state was on a roller coaster for a long time but is now much stronger. My feet still have nerve damage and I need help often becoming stable on my feet or getting to my feet in the first place. However, with much care on my part, I'm able to walk long distances. I still tire very easily, but have made great strides! I can now cook Sunday dinner again. (I cook it on Saturdays and reheat it on Sundays when we get home from church. I wouldn't have the strength to cook after church.) My youngest child just started his senior year of high school and I hope to live long enough to see several more generations.
I married for the second time in 2005, just four years before getting sick. We plan on having at least another 50 years together. If one doesn't plan for life, nothing happens! However, we know sometimes God has a different plan than we do. One place or another (here or in heaven), He will provide the healing that I need. Each day is truly a gift!! How I trust that this site will allow me to reach out to others and support them emotionally through this roller coaster. I can fight it and so can you!!
