Friday, June 30, 2006

Plop, Plop, Fizz, Fizz

I am so relieved to have spoken to my general practicioner this morning. I can’t tell you how wonderful it was to see a face that I recognize. I don’t know why it was so much easier to understand the words coming from his mouth, than a surgeon or an oncologist. I think it’s just the “comfort” thing. Our gp has been a part of our lives for years now and we just have that repoire with him that you need when you have a million questions to ask.

Last night was rough. I do most of my walking and moving in the day hours, so at about 1130 or so I was so sore from sitting in the chair and bed for a few hours too long. I was hurting. The nurse last night was the same one we had on Tue. and Wed. so she knew what kind of an emotional looney I was. She was able to get me some pain meds and in a few short minutes my knife in the side pain was gone and I just had that sudo mental illness to deal with for the rest of the night. I ended up watching Star Jones on Larry King for an hour before I finally passed out. I think I know why the network “fired” her….her voice alone made me nauseous.

My husband was up with me, too. We actually had a nice conversation together in the middle of the night. We spent some time reading the Psalms. Our fears are so hard to overcome. I wish that we knew some answers and then life wouldn’t be so scary. Anyway, he finally got some rest before I watched any t.v., you didn’t think he would watch that crap with me, did you?

I was hurting this am, too. My dh(dear husband) was restless and went to his department to talk around 5 or so. I got some more meds from the nurse and then just sat here in the dark letting the tears well up and fall down my cheeks into a puddle on my hospital gown. It was pointless and non-productive, but it felt GOOD. I imagined some of the pain falling away, too with the salty tears and that helped me overcome my chronic sadness, for the moment.

Okay, my gp actually answered some questions for me, I am almost in shock yet, but here are a few things I found out. He believes the pathology report is locked in at Hodgkins lymphoma, I am a little on the older side for this type of young person lymphoma, but he has seen it before. He believes that I have had it for some time now, at least 6 months. We talked a little about the breast reduction surgery and he wonders if it would have shown up a year ago had I taken an x-ray then. But we can’t live in the past, we have to go with what we know now. He said that my symptoms of weight loss (wish it was more) and night sweats will probably up my staging to a 2b or 3b. I am not positive on those, he was just making an educated guess, but I trust his knowledge and training that his best guess is pretty darn close to right. He assures me that I will be sick and tired of going to the doctor in the next 6 –12 months he thinks therapy will be outpatient mostly, pretty intensive and in the end with or without hair I will be doing some pill popping that will make me look like the pillsburry dough boy (girl, in my case, heck WOMAN). I guess I could have done with out that particular piece of information, but you can have everything…

Thursday, June 29, 2006

Pain control

Today was particularly painful. Early this morning I got my epidural catheter removed and then I had to manage my pain using pills and a few injections. It started out pretty rocky, I got a little light headed and had some ringing in my ears. I think my blood pressure had a little problem stabilizing. They caught me in a wheelchair and put me back to bed for awhile. I felt much better after resting. Later on I got the iv out and then I was wire free. I felt sort of "naked" going for a walk without a pole and a whole bunch of tubes trailing me.

Had lots of visitors again today. We feel very blessed to be a part of such a wonderful community of family and friends. Some very thoughtful friends even brought some books and a DVD player and some movies to keep us occupied tonight.

I have been very organized writing down all of my visitors and gifts on a notepad and tonight I was frantically looking for it. I think the cleaning staff may have accidentally tossed it, my heart is crushed, I just have no faith in my memory. I am praying for enough brain cells to recover all the names I had written....I know it was two pages long.

The doctor did not have any answers for us today. We were unable to meet with him and discuss the diagnosis or treatments so we are trying to be patient and wait for news tomorrow.

I have been pretty fatigued these past few days, but not too tired for my brain to shut down. I have been thinking a lot about life and how I want to experience everything I can with my children and my family. My mom's family is planning a reunion in Branson, MO next Sept. Ordinarily I would say, "I'm not sure if we could go". But I found my self telling my aunt, "SIGN ME UP, reserve us a spot, we are not going to miss this one". I know my daughter will be just starting kindergarten, but I can only remember meeting my aunts and their families a handful of times in my 30+ years and I want my children to know their cousins and keep in touch if they can.

I had a long day and I can't think of any thing more to say. I am yearning for my own bed, my computer chair and soft blanket. I think the plan is for us to go home on Saturday....I'll keep you posted.

I have not been able to live without....

I cannot believe that I forgot to mention in yesterday's post how important my mother and my husband have been in this whole ordeal. Yesterday, my mom combed my hair and put my makeup on, she brought me a life long link to the world wide web, her laptop. She put lotion on my feet and my arms and my back. She made me feel beautiful in a very ugly place. You don't realize how important these small pleasures are, until you cannot perform them yourself.
My loving and caring husband has become my nurse and my confidant. He has gotten me whatever I needed and constantly helped me sit up and lay down, he has helped me brush my hair and my teeth, he has gotten the box of Kleenex so often, it is now a permanent fixture on my bed. He cleans up the room, takes care of visitors, keeps the nurses and doctors updated and only sleeps a few hours. If you have room on your prayer list, please add him. He has been an angel, and I know he has sacrificed much for me. He has missed ballgames, work, the children and time with his family. He is an amazing man and I feel blessed that he is a part of my life.
Yesterday was a big day and I was exhausted. I had a lot of visitors and it was a joy to speak with all of them. I am so blessed. My husband took the kids home and had to check on the dog and the baby pheasants, I forgot to keep you updated....We had two fly the roost the day before surgery. We were keeping them in a cardboard box and when we checked on them Monday night, two were gone. No trace of them anywhere. They have been using their wings to jump up and perhaps they broke out and an animal carried them off, there was not even a feather left in the garage. Also, on Sunday, our 30+ year old freezer died. I was able to save most of the meat, except the deer. I completely forgot about it till just now, that is going to me one dirty job when we get to it, maybe we should call that guy from the Discovery Channel.

I had a couple of evening visitors last night, it was very nice to be able to chat. I was pretty tired and hope I kept composed. I sort of remember asking everyone if they wanted to see the insicion, I am not sure that that would have been in everyone's best interest, but hey, it's the meds talking, right?

I slept better than I have in days, almost seven hours last night. I woke up with a cough every now and then, but I have been doing that for several months, so I am used to it. My hubby was up too late again, I faintly remember him still on the internet at midnight or so. This computer is my therapy but it can be my enemy too, it drains us of our needed rest. I am addicted, and the first step is admitting the problem, "I am an internet junkie!"

We are anxious to talk to the doctors today. We are anticipating getting off of the epidural and going to a button pain reliever. I will have to be able to manage my pain before we can leave, along with a few other requirements...ahem.....bowel movements etc.

I have a garden of beautiful flowers to remind me of all your support, I appreciate your visits, calls, emails, candles, books, lotion, balloons, teddy bears, photos (thanks mom), gifts and boxes of chocolate. It has been one of my goals to make sure that you are all getting accurate information and passing it along. I hope that I can be successful in squelching rumors and fears about my condition this way. I have been very lucky thus far. The pathology report is rumored to be coming today, I will update as soon as I can.

I almost forgot, my wonderful and amazing mother was able to reach my half brother, whom I have not heard from in years, last night. We had a great phone conversation and we traded email addresses so I hope to continue our communication. We are so blessed with technology these days, we have no excuse not to keep in touch with our loved ones. One of the things this whole experience has done for me is put into perspective where my priorities should be. I understand how important my family is and how blessed I am to have children and brothers and sisters, and let's not forget friends........the superglue of my life.

Wednesday, June 28, 2006

Surgery Update

The only reason you are reading this now is that my brother-in-law the internet genius figured out how to get me online at the hospital (thanks a bunch TAG!). At this moment, I am very medicated so I am putting a disclaimer on this post (not responsible for misspelled words, grammatical errors or false information).

My husband and I arrived at the new surgical center around 9 am yesterday. The people at the orientation desk didn't even have my name on the list for surgery, I guess that's how last minute this whole thing was. We were put in a room to wait, of course. It's always hurry up and wait these days. The building was so new that the chairs were still hard and not broken in.
It wasn't too long before the iv was put in and we were well on our way to surgery. I remember talking with the anesethiologist and the nurses and then being moved into the surgery room. The next thing I knew I was waking up in recovery and my left shoulder was throbbing. I was a little short of breath and disoriented. But IT WAS OVER! I went in at about 12:30 and I came to about 3:20. The nurses were very good and helped me get over my pain and discomfort and in no time I got to see my husband and got into a large room, employee perks are so worth it. My husband told me that they took out a wedge of my lower left lobe and they took a big chunk out of the enlarged lymph node (tumor). Everything went really well and now we are on the road to recovery.

I was sitting up in a chair by 9:30 and got to slurp down some chicken broth. It tasted like a steak dinner. I was ravenous. The night was long, but my pain was minimal due to the epidural that I got immediately after surgery.

This morning I met with my surgeon and he took the chest drainage tube out before 12:00. I went for three walks today and have had tons of visitors (Thanks!).

The pathology report will (hopefully) be back tomorrow and we will find out for sure, but the surgeon is pretty positive that it is Hodgkins lymphoma. All the pieces that were removed looked similar, so that is good news, too (no fungus). It is one and the same, so we are dealing with only a single problem. It will more than likely be treated by radiation and chemotherapy in a few weeks.

The incision itself is almost 10 inches long and wraps around my side about 3 inches underneath my shoulder blade. There is a small hole about half way under the line that the chest tube was in.

My beautiful children are here now and it is quite hectic, so I think I will sign off and try to write again tomorrow. Things are moving along slowly but everything is going well and I am fine. Thanks again for all your prayers and support.

Tuesday, June 27, 2006

Power of Prayer

In a few hours I will be in surgery. I wanted to take this opportunity to thank everyone for their prayers and support again. It has completely blown me away. How can I not win this battle with all of you behind me? I slept for almost 5 hours, the longest in a few days. I am still scared, but I can rest assured that everything is going to happen according to God's plan. After talking to my husband, the one who actually listens to the Dr., it seems they are just going to lay me on my right side and make one large incision from under my left scapula (fifth intercostal space for you med. people) place a rib spreader in between my ribs and ATTACK! The incision will be long and sort of wind around my body. I am assuming that recovery will be long and painful. But I can take it. From that incision they will retrieve everything they need, the two cavitary nodules that are screaming fungal infections and the large chunk biopsy of the lymph node. After recovery from surgery, and confirmation of the lymphoma, we can start chemo. The Dr. did say that we cannot, as of yet, rule out sarcoidosis. So there are still a lot of unknowns. But the things that I know for sure, that I am a child of God and I have a super amazing group of family and friends who are praying for me will make this journey all the easier. I will talk to you all again very soon.

Monday, June 26, 2006


I went to the cardio-thoracic surgeon today. He reviewed my scans and told me he needed to meet with his team. An hour later he called us back to say we are going to have surgery tomorrow at 11 am. He apologized for it being so hasty but emphasized that it was necessary. So I am scheduled for a thorascopy , they will be going into my left lobe and trying to remove the infected area for examination. I will also be getting a biopsy of the lung through a different incision. Obviously this is major surgery and I will be hospitalized for 3-5 day with 4-6 week recovery period. I will try to update as soon as I can. Thank you for your prayers.

I can do all things through Christ who strengthens me. Philipians 4:13
So do not fear: for I am with you, do not be dismayed, for I am your God: I will strengthen you, and help you: I will uphold you with my righteous hand. Isaiah 41:10
God is our refuge and strength. A very present help in trouble. Psalm 46:1

Sunday, June 25, 2006

On the job second opinions

Well, one thing that is positive about my situation is that my husband works around pulmonologists all day at the hospital, and today he was able to get one to look at my CT scan. His opinion pretty much matched the one from the oncologist and my gp. So at least we are all on the same page. He did stress that this particular type of lymphoma is highly treatable with chemotherapy and that we should not let ourselves get down about things until we get the biopsy back. He also looked at the cavity in my lung and agreed that it may be fungal, which is encouraging because it may (cross your fingers) account for the inflammation of my lymph nodes, although it is hard to conceive that that largest one is not a tumor. We just have to wait and see (and pray a lot).

Saturday, June 24, 2006

Words of Encouragement

I am SO blessed to have friends and family......This is what you have been saying to me;

"You sure are brave. These are the times when we realize that life is not in our hands. I pray for peace and total restored health, in Jesus' name, over and over again. Hang in there, you are very loved, not only by friends and family but by God who is in control. I am praying for restored health, and peace in your heart.

You will handle this with grace and dignity and that wicked sense of humor that I love. You will fight and you will win, and you will be a better, stronger person for it. I am praying for you my friend, and your beautiful family.

I just don't know what to say, but wish I were there to hug you and tell you....I don't know! We love you and will keep praying for you every day and more. Thank you so much for letting us know so that we can at least be active in supporting you in this small way.You are a special child of God and a wonderful witness to the people around you.

I have spent all day praying and thinking about you and all the things we have done together. I hope you know if you need anything you just have to call. I figure with your positive attitude you can over come anything.

My prayers will be big and constant for you. Praying hard here, girl! I love you, friend!

I hope you see support and love everywhere you turn and I pray for a great outcome.

I am sure everyone is saying...If you need anything let me know. Well same goes for me. Oh, by the are so strong. I am proud to be your friend!"

For these words and so many more from those of you who have called or stopped by, THANK YOU, and GOD BLESS!


CT scan 6/19/2006

This is the CT scan. You are looking at a slice of my body right at armpit level. It is a mirror image. The left lobe is actually on the right side of the picture. My lymph node mass is that grayish area with the darker black spot inside it. It should be similar to the size of the lymph node on the left side of the esophagus, which is actually my right lung lobe. Confused yet?

On a lighter note, I think I may have to give Dr. Howard a call, that breast reduction looks sort of crooked doesn't it? Maybe I can get a refund.......

Day 3

The world has been turned upside down. My dreams are nightmares. My thoughts are scrambled. I feel completely fatigued yet full of curiosity. I am still in denial that anything has really happened. My computer is my safe zone, here I can learn more about what they say I may have (which is really quite scary), I can speak with friends; old and new. I can curse out, pray quietly, proofread and type slowly and no one will know. If I answer the phone or go outside I may have to actually converse with someone and say the words out loud.
I don't know anything yet for sure, and I keep this sliver of hope near my heart, praying that maybe a technician smudged the film with his fingers and that's how the spot showed up. It could happen.
I can't believe I didn't go to the doctor in March, or April, or May......Could it have been avoided, perhaps not?
It is nice to be here among familiar sounds, the washer, the dehumidifier, the kids; and smells, coffee and soggy diapers. I feel more comfortable than in the car driving to the waiting room to take a test or meet with a "specialist".
So I sip my coffee with cream and sugar and visit the sites that I have come to love in the past few months and try to free my thoughts from what is to come on Monday.
Last night, my husband snapped this photo and said, "We don't have a lot of shots with you and the kids...."

Friday, June 23, 2006

PET scan

I arrived at the North Center about 30 minutes early. Last time, on Monday, I was early and they got me in and out before my actual scheduled time. Today I saw one of my best friends parents, it was the first "they know I have it, what should I say?" meeting. It went well. She hugged me and they went on their way to MRI-ville and I went down the hallway marked CANCER. It was a long hallway and there were framed professional portraits along the wall of men, women, and children who had survived cancer. It was beautiful, I can't believe I had never seen this before. The waiting room was empty. It smelled of coffee and cookies and it was a good smell, perhaps because I had not eaten anything since the night before. In the corner was a bookshelf and I thought to myself, "self, yesterday you waited over two hours in the waiting room, maybe a book is a good idea..." So I got down on my knees and started fingering the bindings of a couple of Stephen King novels when the Nuclear Med Lab Dude called my name. As if there was anyone else in there? We walked down another long hallway and he tried to make chit chat..."Have you ever had at PET scan before?" "Nope" I said. "Okay, well I'll let you in on the procedure when we get to a room." and we kept walking the rest of the mile-long hallway in silence. He took me to a room that had a chair that kind of looked like one in a dentist's office, and he non-chalantly says, "make yourself comfortable in the recliner" I had to look around the room to make sure he was calling this Teflon covered dentist chair a recliner, but the only other chair looked like it belonged in the auditorium with it's thousands of brothers and sisters. So I climbed up into this commercial plastic "recliner" and tried to get comfortable.
He spent the next few minutes filling me in. I am to give him a finger prick of blood for a sugar test. Give him more blood for labs through my arm, drink some nasty tasting banana fluid, be pumped (through an iv) full of radioactive fluid that he brings to the room in a lead case (YIKES), sit completely still for 45 minutes and then be scanned in the machine. No big deal, right? I asked for a sedative. I am Mrs. fiddle pants, I am always tapping my toes or fingers. "What exactly is completely still?" He looks at me like I am nuts and goes and gets me the pill and some warm blankets.
The 45 minute nap went by too quickly, and when they woke me I had a full bladder. They excused me for a moment and then into the machine I went. 35 more minutes here and I was done. Other than feeling like I had a 2 martini lunch, I felt fine. Two more appointments on Monday and none of them involve needles.
Bring it on, cancer!

Cough = Cancer ?!?!?!?

I have had this cough for 8 or 10 months now and I have tried to treat it with antibiotics from the Dr. I just didn't have any luck with treating it and then it would get a little better and go away and come back and anyway, finally my Mom and my husband insisted I go in and ask for a chest x-ray, that was last week, I think, Wednesday. That came back with a big cloudy spot on my left lung lobe and so the Dr. Set up an appointment for a CT scan.
The scan was on Monday and on Wednesday I had my first appointment with the Rhuematoid Dr., which was also set up by my GP. Our meeting was brief and frankly cold. She finally asked me, "did you bring anyone with you?" "No", I replied. Then she sort of mumbled and fumbled for a pen and paper. She asked me if I had an appointment with my GP soon, "no" I answered. "This really isn't my place," she started. "I have a copy of your scan and it is disturbing....." So that is pretty much how I found out that I have a mass of lymph nodules under my left collar bone and several pulmonary lesions and some lymph node swelling, there were also some cavitary nodules that will need to be biopsied. It was absurd and hardly believable, especially since she wouldn't let me see the scans or anything. She phoned my GP and he explained everything, although the outcome was not any better. I phoned my husband and told him. He was shocked as well. He took off the next day of work to sit in the waiting room with me at the oncology center.
Well, after the longest waiting room visit in my life we found out that they are 99% sure it is cancer. It is malignant and probably Hodgkin's or some other kind of lymphoma. I scheduled a PET scan for Friday and a surgical biopsy consultation for Monday.

I got to see the pictures of my lungs and there is a 15 mm mass right under my left clavicle. It is HUGE. There is also a hole down further in my lung on the same side, they are not sure what that is, but promised me we would deal with it later on.

I guess the mass will be biopsy'd and then we will know a lot more.

The most important thing is the mass and I went in for a PET scan today (to see if there are any more masses in my pelvis or armpits, any where there is a lymph node) and I have a surgical consult for a biopsy on Monday and an appointment with the pulmonary people in my husband's department. We met with the head of the Oncology Dept. Dr. Keppen and he feels very strongly that it is lymphoma. All of my lymph nodes are inflamed. At this point the one in my lung is the only one we know of that may be cancerous. Of course there is no way to tell for sure without the biopsy. It may be Hodgkin's lymphoma. But, they need to get in there and take a pretty big chunk of it so they can take it to the lab. It is directly under my collar bone and pushes up against my windpipe and makes it difficult to breathe, and forces me to cough.
We are in shock and I haven't really talked to any one in person besides family, thank God for email. No one could understand my words in between sobs.

Friday, June 16, 2006

Feed the birds....tuppence a bag

Last night Grandma showed up with a small cardboard box that peeped. Upon further investigation my children discovered it was full of baby pheasants. Nine to be exact. What a thoughtful mother I have. It seems her co-worker found some eggs and tried them out in her incubator. Now we have an instant bird family. We got out the heat lamp and bought some chick starter and put them up high in the garage so the cats won't get to them. They are peeping up a storm, I put some stones in a shallow dish for water and they are guzzling it down. All 9 were still accounted for this morning. My 4 year old prayed for their health and safety last night. "What happened to their mommy?" she asked. I told her as gently that I could that their mommy was sick or lost or maybe in heaven. "And their daddy works all the time so he can't take care of them, right?" Ugh, an knife right into my heart. I was caught a tiny bit off guard and as I tried to think of words to say I heard a sniff behind me, my husband had heard it, too. I swiftly explained that in the bird world, it just wasn't the daddies job to take care of the babies. Later, as we were drifting off to sleep, my hubby says," maybe we should plan a family day this next week, I've been really busy lately". Thank goodness for Grandma, she really knows how to bring things full circle.

Thursday, June 08, 2006

Who's turn is it?

On Monday or Tuesday of this week our washer quit working. I had an immediate need to do laundry because my husband plays amateur baseball and needed a clean uniform. With a town full of relatives I was sure to find someone whose washer I could borrow. First call, no one home. Second call, YES! My husband's uncle was home and said I could come over. I hung the uniform out to dry not an hour later. One day later I found my self in the same predicament. We had planned to go and purchase a new washer, but my husband got called into work. So, back on the phone I go. First call, "Um, hi, I already bothered other relatives, now it's your turn?" I hope this cycle ends soon, I only have two more relatives to bug and one lives in an apartment building.......I would have to pay for my wash there....

Thursday, June 01, 2006

Let's play pretend

Yesterday afternoon was a busy one. My niece showed up at my door at about 4 and I had forgotten that my sister had scheduled a hair appt. here in town. So I made snacks and supper for them. Then Mom stopped by. I went to show mom the new power washer and it was GONE! I was here all day, except for the few moments I took the kids uptown to get the mail from our box. I called my husband and freaked, I called his brother, I called his uncle. My son was tugging on my leg while I was making these calls and finally I said, "What?" to him and he said, "mom, the wasir is in the twailer". He has been hauling things to the trailer all week, my husband said he had the whole thing full of wood pieces and tools. We laughed so hard we cried and I had to call everybody back and apologize for freaking out. It was so funny.

All night I listened to him playing and come to find out, he re-enacts the entire previous day each time he plays. Last night he played "ballgame" He got his bat and ball and helmet out and played, then he drug a cooler in the backyard and had a beer, "it's just 'tend mom," he said. My daughter played the part of me, she drug around two babies and told them "no candy and if you run on the road it's not safe and you'll have to sit in time out". My husband and I wished we had a video camera.