I can't believe I haven't updated my blog since my surgery. There were times when I thought about it, but for some reason I just didn't do it. Now here I am, six weeks out of surgery and almost ready to go back to work. This season of my life is officially over. And I have great hope for what is to come!
Going back to the Thursday of surgery, Mike and I got there nice and early in the morning -- 5:30 a.m. It's a good thing I got to go back to sleep because mornings and I do not get along! When the anesthesiologist came in he gave me the choice of having a thoracic epidural, along with my general anesthesia. I was already told by one of my colleagues that if I was offered this I should take it. It turned out to be a great decision as it eliminated the need for the morphine pump after surgery, and allowed me to be alert and not so groggy in the days following. The surgery went as expected and lasted about 4 hours. The only surprise for Dr. Larson was that my left ureter(where my kidney was removed 3 years ago) had scarred itself to the left ovarian artery. He took the time to dissect the two apart, but after doing so realized that my left ovary "didn't look so good". He made the decision to remove it. In the end I gave up my uterus, cervix, left ovary, appendix, pelvic ligaments, and 35 lymph nodes. Yep, 35!
My hospital stay was three nights, as expected. Unfortunately the hospital has not fully converted to private rooms and they were quite full the first night so I ended up with a roommate. Bernice was around 80 years old and had a hard time hearing. As a consequence of that she and her husband shouted at each other, the nurses talked extra loud to her, and we watched the Nightly News with Tom Brokaw at volume 40. Go ahead and put your tv on volume 40 if you want to get an idea of what it was like. At one point after we had both turned out the light the first night, Bernice started shouting that she was getting out of bed. Well, as I said, she was around 80 -- and on top of that she was in the hospital for a knee replacement! Needless to say, I yelled back to her to stay in bed and immediately called for the nurse. She seemed like a sweet lady and she sure kept me occupied that first day! The next morning Bernice went to the nursing home and I really dreaded getting another roommate. That afternoon the nurse came in and wrote the name "Pam" on the white board, and shortly after they brought in another bed with a gal much younger than Bernice! Pam had a friend named Renee with her. Over the next couple of hours we got to know Renee while Pam slept. She told us that Pam had a tumor(thankfully benign!!) removed. I just remember feeling so bad for her as she was on a morphine pump and really out of it. A short time later a private room opened up and the nurses came to get Pam to move her. This time I was sorry to see my roommate go! Although we saw Renee off and on the rest of my hospital stay, we didn't get to talk to Pam much. When we left the hospital I felt a little sad knowing that we might never see those girls again. Ranee lived out of town and I wasn't even sure I would recognize Pam again since she had been in bed most of the time I saw her. Little did I know how wrong I was...
On Sunday Mike was able to take me home. I was really tired, but otherwise I was feeling pretty good. I was so fortunate to have little pain. The gas pains I had after my kidney surgery never came this time. For that I was so thankful! My biggest battle was nausea. I dealt with that in the hospital when they tried to give my narcotics. I decided to stop the narcotics, but the nausea persisted. Luckily they gave me meds for it and within a couple of days it was gone.
On the Tuesday after surgery I was supposed to get my pathology results. All of my tissues had been sent to be examined to look for any cancer cells that might have spread past my cervix. If that was the case I would need to look at further treatment. I didn't get a phone call on Tuesday and went all day Wednesday without hearing anything. Finally at about 8:30 p.m. Wednesday night Dr. Larson called me. He said that pathology had been going over everything "with a fine tooth comb", but they could find absolutely no evidence that the cancer had spread. Praise the Lord!! My treatment was officially over.
The next couple of weeks were spent mostly resting and trying to recover my strength and appetite. I was feeling pretty good and starting to get out to my boys' games and a few other activities. But then just 2.5 weeks after surgery I started having very sharp pains in my right lower side/abdomen. They would shoot around to the back. It was a Sunday and as the day and evening wore on they got worse. I went to bed with heat and took Tylenol and just prayed it would go away. I was up off and on all night. On Monday I called my doctor's office. Unfortunately Dr. Larson wasn't in, but his colleague Dr. Johnson agreed to see me. After a few tests Dr. Johnson felt it was probably a strained abdominal muscle. I was already scheduled to see Dr. Larson for my check up the next day. When he saw me he was less convinced of a muscle issue and grew concerned about my sole kidney. He arranged to get an ultrasound done that Thursday. The good news was that my kidney looked great. The bad news was that I had a hemorrhagic ovarian cyst that had ruptured and spilled blood into my abdomen. That explained the pain. There is a chance I will have these again in the future, but Dr. Larson is hopeful they will not be as painful and will eventually go away.
Last week Mike and I were eating at El Mezcal when a familiar face walked in -- it was Renee!! And I was pretty sure the girl with her was Pam. I insisted we go over and talk to them -- it was a great reunion! Pam looked great, although she said her healing was going slowly. It's amazing how a simple hospital stay can create a bond between people!
Yesterday Mike and I went to Marshfield for my last post-op visit. Dr. Larson was very pleased with my healing. He plans to see me every six months for the next two years. I am fortunate that the chances of my cancer recurring anywhere else is very low. There is a 92% chance that I will be just fine. I like those odds! But the best part of the day -- we walked out into the waiting room and there was Pam! Now I count her as my friend :)
As I look back on this whole experience it's almost surreal that it even happened. Because I didn't have to go through the months of chemo/radiation that so many cancer patients do I sometimes feel like I didn't even have cancer. But the word is real -- and it's scary. I am just so thankful that it was caught early and could be dealt with swiftly. Let me get my public service announcement in for the ladies -- please be sure you have your Pap smears done! October was Breast Cancer Month and although mammograms are also extremely important, I hope the other cancer screenings won't be neglected.
I don't know that I can ever thank everyone enough for all of the cards, text messages, phone calls, visits, gifts, meals, and most of all prayers. It's so humbling to know that you all took the time to care!
As most of you know, my blog started 3.5 years ago as a kidney donor blog. I am a huge proponent of organ, tissue, and blood donation. Since my kidney donation I believe it is my mission in life to bring awareness to the incredible need for these donations. This was a little bumpin the road, but it's time to get back to the original plan. Last week I had lunch with Sara, her daughter Ashlyn, and Sara's cousin Kathy. We are already planning our next project! Stay tuned for what you can do to have fun while promoting organ donation!
Eye Jill
My journey to becoming a living kidney donor.
Thursday, November 6, 2014
Saturday, September 20, 2014
Almost Surgery Time
It's been just over six weeks now since that dreaded phone call from Dr. Ruta telling me that my Pap smear was abnormal. Sometimes it feels like a lifetime ago. Other times it feels like it happened yesterday. I've been caught in this strange waiting period. It's been a busy time with work and the boys' football games. When Ike is throwing the football, Josh is catching the football, or I am discussing an "eye" diagnosis with a patient, I can totally forget my health. But then out of the blue I will suddenly stop and remember I have cancer. And I don't really look like a cancer patient I guess. I suppose that means I have been feeling pretty good. Well most of the time I can say that is true. After all, I have been living life as normal and for that I am thankful. But some days I am so physically tired and other days I am just mentally tired. And mostly I am just ready to get going with the next step.
This past Monday I saw Dr. Larson. He was very happy to see that I healed up nicely from my biopsies. Then Dr. Larson, Mike, and I sat and discussed my surgery. It will take place this upcoming Thursday(September 25th) as planned. I won't know the time until the day before, but Dr. Larson thinks it will be in the morning. The surgery will take approximately four hours. We are planning on a three night hospital stay. As he told me before, along with the usual hysterectomy he will also take pelvic ligaments and lymph nodes to be tested in pathology. We also discussed whether or not to take my ovaries. I had some concerns about keeping them as my dear aunt Muriel died of ovarian cancer. And let's be honest, if my cervix tried to kill me why should I trust my ovaries not to do the same?? Dr. Larson did tell me, however, that there have been studies done that show women who have their ovaries removed prior to menopause are at a higher risk for stroke and heart disease. I did not know that! So, it sounds like the best course right now is to keep them and hope they behave! He did tell me though that he will actually be relocating them to a new area -- under my ribcage. He explained that on the chance that I would need pelvic radiation now or in the future, tucking my ovaries under my ribs will keep them out of harm's way. And then he told me that I am also going to be getting a bonus appendectomy. The right ovary's new home would be very close to the appendix. If I were to ever end up in the ER with pain in that area the docs would not know if it was coming from my ovary or my appendix. So goodbye appendix! Good thing I have so many spare parts I don't need! Kidney, appendix, uterus -- who needs them anyway?? My friend Jolene did tell me that I may need them to add extra stuffing though to fill in the empty spaces! Yesterday I saw Dr. Ruta for my pre-op physical and I am good to go. So here goes nothing...
I have to say one more thing about my diagnosis and it is going to sound weird to some of you. Many people equate cancer with chemotherapy and hair loss. Because I have the possibility that surgery will take care of my cancer, I have been sort of feeling like I don't really have "real" cancer. Not that I am in denial or anything, but just that I don't feel like a typical cancer patient. So the other day I had a patient in to see me who had colon cancer a few years ago. She just had to have surgery and that was all. I was telling her my feelings and she said, "Exactly! It's like you aren't in the club!!" And she was right! That was the perfect explanation. Now I am not saying that it is a club I want to be in, and I am not trying to say that anyone has treated me differently because I might have an "easier" cancer than a lot of people do. And I'm not looking for any sort of sympathy. It's just a feeling I have and I thought I would share it. Maybe some of you can relate?
And let me just say that people are awesome. The messages, cards, texts, phone calls, hugs, flowers, well-wishes, and most importantly -- PRAYERS -- are overwhelming to me. It is so humbling when you find out how many people care. I have often gone to a funeral and wondered if the person who died knew when they were alive how many people truly cared about them. Well, I am one of the lucky ones who sure does know it!
Just two days ago my friend Jill was waiting on results from her own medical tests. She messaged me Thursday afternoon and wrote the devastating words, "I have cancer Jill". She was diagnosed with thyroid cancer and will see a surgeon soon. It breaks my heart to see more people going through this. But as I told her -- "Look out cancer. Jills rock!!" And together we both plan to prove that!!
See you on the other side of surgery!
Wednesday, August 27, 2014
God's Plans and "That Word"
Up until this point I have written mainly on the topic of my kidney journey and organ donation. The next blog post I had hoped to write was going to be about my whirlwind speaking tour that I was already planning in my head. I had spoken to Tara Storch of the Taylor's Gift Foundation about doing an event here in my town to raise awareness for the need for organ donors(if you don't know the story behind Taylor's Gift please visit www.taylorsgift.org). I just knew that spreading the word of organ donation was my mission and I was cruising in that direction. But once again, God reminded me that my plans are not always His plans. He stopped me in my tracks with one simple phone call. And that one word that changes everything....
At the end of July I had a routine physical and a Pap smear. I have never had a single bad Pap result in all of my life, so I walked out of Dr. Ruta's office that day and didn't think about the test again. In fact, my biggest concern was only that my kidney function numbers would come back okay. Dr. Ruta told me that day that all of my blood work and the physical exam looked great. She went so far as to pronounce me the "perfect specimen". I was feeling pretty good about my 42 year old self. The next week I was waiting for my son to get done with football practice and talking with my friend Lisa when my phone rang. I saw that it was the clinic's number, but it was 7:15 p.m. Because I work in the same clinic as Dr. Ruta I thought maybe she was calling to talk to me about something work-related. Imagine my surprise when she told me she had my Pap smear results in front of her and they were "not good at all". I asked her to read me exactly what the pathology report said(because as a doctor I like to hear the medical jargon!) She read these words out loud to me, "Atypical glandular cells, favor neoplasia". I asked if that meant what I thought it did. She replied, "yes Jill, they strongly suspect cancer". Now I have had a lot of family members, friends, and family members of friends who have had cancer. I am no stranger at all to the word, even though I wish I was. But something about the doctor using that word in relation to my own health....well, there are no words to describe how it feels. Dr. Ruta promised me she would make me an appointment very soon with my gynecologist in Marshfield and said she was very sorry. I hung up in total disbelief. Thank God my friend Lisa was there because I needed to say the words to someone else to make them real. Lisa too was stunned. At that time my son Josh came out of the locker room and I realized that I was going to have to tell my kids...tell my husband. I felt sick to my stomach. I tried to keep up a brave face for Josh's sake so that he wouldn't suspect anything was wrong before I talked to my husband Mike. When we got home he went upstairs and I took Mike into our bedroom. I started crying before I could even get the words out. He was in shock. We simply sat there and hugged and cried. Then we took to the internet. We looked up the type of cells I had and were shocked to find out that these cells show up on less than 1% of all Pap smears. Unfortunately we also read that they are responsible for about 20% of all cervical cancers and they are more aggressive than the more common squamous cells.
Fortunately Dr. Ruta called back that same evening and told me she had gotten ahold of Dr. Sampson, my gynecologist. It just so happened that I was already scheduled for a mammogram in Marshfield the next day and Dr. Sampson agreed to add me on to the end of her day. Mike and I met with her and she did five biopsies of the cervix and endometrium. She told us before we left that her gut feeling told her they would find something when the biopsies were sent to pathology, but she was optimistic it wouldn't be much. That night we told our boys, along with my sisters and parents. I dreaded calling my mom as she has been through so much herself with her lymphoma, but we wanted them to know. It was the longest weekend of my life waiting for the results of the biopsies. Dr. Sampson was gone on Monday and Tuesday. so Dr. Ruta was watching the computer to see if the results came in. By Tuesday afternoon when I hadn't heard anything I decided to walk down to her office. Together we checked and saw that the results were in. She pulled up the report. As she scrolled down the screen all I saw was, "Biopsy #1: Endocervical carcinoma in situ. Biopsy #2: Endocervical carcinoma in situ. Biopsy #3:........same". Only one out of 5 biopsies came back WITHOUT cancer cells. My heart sank and Dr. Ruta gave me a hug and I fought back the tears. Within just a short time Dr. Ruta had made me an appointment two days later to see Dr. Dale Larson, a gynecologic oncologist in Marshfield.
I have to admit I was a little nervous to see Dr. Larson. I had heard rumors around the clinic that he can be pretty tough. I wasn't sure what to expect. But within 2 minutes of him walking in the room I knew right away that he was our guy. He was warm and friendly and put Mike and I at ease right away. He spent an incredible amount of time going over all of the details and possibilities with us. I was scheduled to have a cone biopsy that afternoon with him and he told us that the results of that biopsy would guide our next step. Either way I was going to have a hysterectomy -- the type would depend upon whether or not the cancer was invasive, and that is what the cone biopsy would tell us. He did assure us that he felt this was caught early and it was his gut feeling that the cancer was not invasive. But he also told us that because I had the more aggressive type of cells(glandular) that any invasion at all would mean that we would go the more aggressive route of treatment -- the radical hysterectomy. That afternoon I went into surgery and had the cone biopsy done. And then the "results waiting game" started again. This time however I was much calmer. I felt that whatever came was what was meant to be. And I knew that Dr. Larson was the doctor we were meant to have. And I also knew in my heart that the results would show invasion. I'm not sure how I knew, except that I knew looking back that I had a few symptoms that I didn't realize were symptoms. And the thing about cervical cancer is that there are no symptoms until it is invasive. So even though Dr. Larson didn't think it would be the case, I just knew that it was invasive.
The next Monday evening at about 5:30 p.m. Dr. Larson called and said he was sorry to tell me that the results did indeed show that the cancer had become invasive -- by about 3mm. It's crazy to think of 3mm. It sounds tiny, but when you are talking about invasive cancer it suddenly sounds huge! Dr. Larson told me that I will need to take at least four weeks for my body to heal from the biopsy before he can do the hysterectomy. It sounds scary to leave the cancer that long, but the risk of infection is just way too high for them to go in any sooner. And he assured me that there would be no further spread in that short of a time. So on September 15th I will see Dr. Larson for a check of the biopsy site. Assuming all is healed I will go into surgery on September 25th. He will remove all of the "usual" hysterectomy organs, plus lymph nodes and pelvic ligaments. All of the tissue will be sent to pathology. If there is no spread to the lymph nodes then my treatment will be complete. If by some chance(Dr. Larson promises the odds are small) the cancer has spread to the nodes then we will have to discuss chemo and/or radiation.
I have used the word "oncologist" no less than a thousand times in my life. Now I am getting used to using the words "my oncologist". The word "cancer" just takes your breath away. As we have told people what is going on I have had several people(including Sara) tell me that it just isn't fair that I gave a kidney and now have cancer. But I don't think God works that way. I don't think He gives us only bad stuff if we do bad things and gives us only good stuff if we do good things. Truthfully I usually don't know for sure HOW God works, but in the words of my husband, "I wouldn't want to serve a God who I could figure out". How true is that? If we knew what God was thinking how much less amazing would that make Him? And I certainly learned on my kidney journey that He does know the plans He has for me. What appears awful in the moment is a blessing in the long run. People have told me that I have a great attitude. I'll be honest. Some days I don't. Some days I am scared to death. And some days I get just a little mad at God that I have to deal with this right at the time when I thought I was ready to start a whole new chapter of donation promotion. But He obviously knows what He is doing. I have to keep remembering that. And I have to be happy that out of all of the awful cancers out there I did manage to get one with a really high survival rate! Hopefully cancer diagnoses are limited to "one per person" :) Stay tuned...God's got a plan!!
At the end of July I had a routine physical and a Pap smear. I have never had a single bad Pap result in all of my life, so I walked out of Dr. Ruta's office that day and didn't think about the test again. In fact, my biggest concern was only that my kidney function numbers would come back okay. Dr. Ruta told me that day that all of my blood work and the physical exam looked great. She went so far as to pronounce me the "perfect specimen". I was feeling pretty good about my 42 year old self. The next week I was waiting for my son to get done with football practice and talking with my friend Lisa when my phone rang. I saw that it was the clinic's number, but it was 7:15 p.m. Because I work in the same clinic as Dr. Ruta I thought maybe she was calling to talk to me about something work-related. Imagine my surprise when she told me she had my Pap smear results in front of her and they were "not good at all". I asked her to read me exactly what the pathology report said(because as a doctor I like to hear the medical jargon!) She read these words out loud to me, "Atypical glandular cells, favor neoplasia". I asked if that meant what I thought it did. She replied, "yes Jill, they strongly suspect cancer". Now I have had a lot of family members, friends, and family members of friends who have had cancer. I am no stranger at all to the word, even though I wish I was. But something about the doctor using that word in relation to my own health....well, there are no words to describe how it feels. Dr. Ruta promised me she would make me an appointment very soon with my gynecologist in Marshfield and said she was very sorry. I hung up in total disbelief. Thank God my friend Lisa was there because I needed to say the words to someone else to make them real. Lisa too was stunned. At that time my son Josh came out of the locker room and I realized that I was going to have to tell my kids...tell my husband. I felt sick to my stomach. I tried to keep up a brave face for Josh's sake so that he wouldn't suspect anything was wrong before I talked to my husband Mike. When we got home he went upstairs and I took Mike into our bedroom. I started crying before I could even get the words out. He was in shock. We simply sat there and hugged and cried. Then we took to the internet. We looked up the type of cells I had and were shocked to find out that these cells show up on less than 1% of all Pap smears. Unfortunately we also read that they are responsible for about 20% of all cervical cancers and they are more aggressive than the more common squamous cells.
Fortunately Dr. Ruta called back that same evening and told me she had gotten ahold of Dr. Sampson, my gynecologist. It just so happened that I was already scheduled for a mammogram in Marshfield the next day and Dr. Sampson agreed to add me on to the end of her day. Mike and I met with her and she did five biopsies of the cervix and endometrium. She told us before we left that her gut feeling told her they would find something when the biopsies were sent to pathology, but she was optimistic it wouldn't be much. That night we told our boys, along with my sisters and parents. I dreaded calling my mom as she has been through so much herself with her lymphoma, but we wanted them to know. It was the longest weekend of my life waiting for the results of the biopsies. Dr. Sampson was gone on Monday and Tuesday. so Dr. Ruta was watching the computer to see if the results came in. By Tuesday afternoon when I hadn't heard anything I decided to walk down to her office. Together we checked and saw that the results were in. She pulled up the report. As she scrolled down the screen all I saw was, "Biopsy #1: Endocervical carcinoma in situ. Biopsy #2: Endocervical carcinoma in situ. Biopsy #3:........same". Only one out of 5 biopsies came back WITHOUT cancer cells. My heart sank and Dr. Ruta gave me a hug and I fought back the tears. Within just a short time Dr. Ruta had made me an appointment two days later to see Dr. Dale Larson, a gynecologic oncologist in Marshfield.
I have to admit I was a little nervous to see Dr. Larson. I had heard rumors around the clinic that he can be pretty tough. I wasn't sure what to expect. But within 2 minutes of him walking in the room I knew right away that he was our guy. He was warm and friendly and put Mike and I at ease right away. He spent an incredible amount of time going over all of the details and possibilities with us. I was scheduled to have a cone biopsy that afternoon with him and he told us that the results of that biopsy would guide our next step. Either way I was going to have a hysterectomy -- the type would depend upon whether or not the cancer was invasive, and that is what the cone biopsy would tell us. He did assure us that he felt this was caught early and it was his gut feeling that the cancer was not invasive. But he also told us that because I had the more aggressive type of cells(glandular) that any invasion at all would mean that we would go the more aggressive route of treatment -- the radical hysterectomy. That afternoon I went into surgery and had the cone biopsy done. And then the "results waiting game" started again. This time however I was much calmer. I felt that whatever came was what was meant to be. And I knew that Dr. Larson was the doctor we were meant to have. And I also knew in my heart that the results would show invasion. I'm not sure how I knew, except that I knew looking back that I had a few symptoms that I didn't realize were symptoms. And the thing about cervical cancer is that there are no symptoms until it is invasive. So even though Dr. Larson didn't think it would be the case, I just knew that it was invasive.
The next Monday evening at about 5:30 p.m. Dr. Larson called and said he was sorry to tell me that the results did indeed show that the cancer had become invasive -- by about 3mm. It's crazy to think of 3mm. It sounds tiny, but when you are talking about invasive cancer it suddenly sounds huge! Dr. Larson told me that I will need to take at least four weeks for my body to heal from the biopsy before he can do the hysterectomy. It sounds scary to leave the cancer that long, but the risk of infection is just way too high for them to go in any sooner. And he assured me that there would be no further spread in that short of a time. So on September 15th I will see Dr. Larson for a check of the biopsy site. Assuming all is healed I will go into surgery on September 25th. He will remove all of the "usual" hysterectomy organs, plus lymph nodes and pelvic ligaments. All of the tissue will be sent to pathology. If there is no spread to the lymph nodes then my treatment will be complete. If by some chance(Dr. Larson promises the odds are small) the cancer has spread to the nodes then we will have to discuss chemo and/or radiation.
I have used the word "oncologist" no less than a thousand times in my life. Now I am getting used to using the words "my oncologist". The word "cancer" just takes your breath away. As we have told people what is going on I have had several people(including Sara) tell me that it just isn't fair that I gave a kidney and now have cancer. But I don't think God works that way. I don't think He gives us only bad stuff if we do bad things and gives us only good stuff if we do good things. Truthfully I usually don't know for sure HOW God works, but in the words of my husband, "I wouldn't want to serve a God who I could figure out". How true is that? If we knew what God was thinking how much less amazing would that make Him? And I certainly learned on my kidney journey that He does know the plans He has for me. What appears awful in the moment is a blessing in the long run. People have told me that I have a great attitude. I'll be honest. Some days I don't. Some days I am scared to death. And some days I get just a little mad at God that I have to deal with this right at the time when I thought I was ready to start a whole new chapter of donation promotion. But He obviously knows what He is doing. I have to keep remembering that. And I have to be happy that out of all of the awful cancers out there I did manage to get one with a really high survival rate! Hopefully cancer diagnoses are limited to "one per person" :) Stay tuned...God's got a plan!!
Subscribe to:
Posts (Atom)