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Click to the left on the Lightthenight.org link to donate online and to the right on my college graduation pic to send me a direct email.
With Love and Recovery,
Life is a Gift,
Let's Roll,
Jessica
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My Personal Hodgkin's Lymphoma Story
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My life before, during, and after cancer diagnosis
1/05/01
Well, Doc called me back today because I called this morning with a huge concern. I woke up and couldn't really maintain my balance. Even after all day gone by with slight improvement, I am functional, but very off balance. Feeling like poop. Great yesterday - poop today. Mel gave me a field sobriety test that I failed. I have eaten all day for whatever reason. I thought maybe nutrients and then it just escaladed. Anyway, Doc says all the tests came back okay. Even the screening for Down Syndrom and whatever else. My CBC (Complete Blood Count) came back low. Slightly anemic, but nothing to fret about so long as I am not bleeding. At least not now. See, I knew that by the darkness around my eyes. We discussed the fact that the medicine I am on has almost completely taken away the symptoms of cramping and the few contractions are even more limited now. Thank goodness. Even the pain in my back has subsided, but the medication may be a contributing factor to the diziness. I will keep you updated.
Jacynta is supposed to be napping and she is opening and closing the door to my office as we speak. So.... gotta still be a mommy.
Love,
Jessica
1/9/01
I went to 9-1-1 today and did my sit along for two hours. It was slow. Certain calls which are not 9-1-1 require a lot of other calls made and details to be followed up on and stuff like that. One call she got while there was a Hispanic - (needed the Spanish translator on the line) who had an abandoned motorcycle in front of his house. The operator needed to determine if it could be picked up by City or by sanitation or by the people who pick up thrown out refrigerators and such. Then to call and to transfer and yada, yada, yada. 15 minute call. Another one was a school police officer had a female with child who had 9 warrants - traffic - who wanted her picked up. What a crazy job... to look up the person, check the warrants, call somewhere to have the warrants verified, call a lieutennant to see if they would release an officer, after having figured out which sector the school was in, to call marshall's office to see if they would go get her, to end up sending nobody. Wasn't important enough. 1/2 hour call. Soooo soooo soooo many people accidentally dial 9-1-1 from their cellulars and don't even know it. An amazing amount. Lots of 9-1-1 disconnects too. At the end of my two hours, there was one robbery in progress call with another operator. Wooo hooo.
The amount of #'s typed is a lot. DOB, SS#, Addresses, Height, Weight, Codes. I need to work on that a whole lot. My 100-question test of multiple choice and true/false is on the 30th. If I get this $30K/year job, I will spend $12K in daycare. Wow. I will keep you updated.
Let's see, Jacynta takes her parents for a walk at least once a day. If I or we are sitting down and the mood strikes her, she will come grab my hand (matter-of-factly) and pull me up only to get Daddy's hand and lead us on a casual walk around the house and especially a couple of times around the dining room table. It is hysterical.
When she hugs us now she pats us on the back. That is the big highlight lately. What warmth! She doesn't like the high chair much since our trip to Grandma's where she had her own little table. Thank you very much. She sits in her booster chair now though. I wish I could super glue her little tush in it though.
Her words are flowing. She is like a sponge now. With a need for more. (Careful Mommy!) ((Daddy's and angel))
She still loves to bathe. That is a good thing.
Her hair is getting much thicker. Won't be long now before she has lots and lots of it.
My health is good. I go to the doctor (specialist) tomorrow to confirm that, however he will be taking me off the medication I am on now which has almost completely gotten rid of the cramps and has totally gotten rid of the contractions. Update later. Everything else is going smoothe. Especially the surface of my belly. I just look very pregnant now. Nothing else to say about it. It is there. And the belly button is almost not. Oh well. Sleep is only a little challenging. Up several times a night and can not really get too comfortable. I am sure I will adjust. Or not. I don't really plan on ever sleeping again anyway.
Mel awaits the results of his last sergeant's test only to be given the date for the oral board. The results should be in on the - - - Thursday!!!! Ugh! I am sure he did well, but I will stay out of his way anyhow.
Well, I think that is about all I can say for right now. I wanted to nap while Jacynta was napping. Mel and I stayed up late (against our better judgement) and watched that tear-jerker, "The Patriot".
On that note,,,, Ciao
Jessica
2/03/01
Well, with all the activity around here, it is a wonder we still have any communication at all.
Jacynta is keeping us busier than ever and with smiles always. She is growing in leaps and bounds. It almost seems that if we take time out for much else we might miss something. She is gaining about two words a day and they are not up to us which ones they will be. The more recent ones are me, more, butt, hey you!, (where) are you?, and my favorite "I love you". Her activities are different all the time too. She is on her knees at the table on a regular chair, trying on all kinds of shoes, chasing bubbles, talking on the phone, making a run for it when out shopping, taking care of her "baby" doll, reading books, sorting shapes, kisses, hugs, getting "ow"s, dancing, closing doors, walking down stairs foward, meltdown fits, cleaning out drawers and cabinets, swiping personal belongings, imitating the Budweiser commercial (Daddy's funny), calling Daddy- Mel, taking off her socks, and so on. She still hardly eats, but manages to fill diapers. Your guess is as good as mine.
My computer is fixing to have a makeover. I am getting ready to save the few things I deem necessary and dumping everything, reformatting, and starting over. I am tired of of all the error messages and not being able to access my web site and various of other things. So, if I disappear for a while, you will know why. I, hopefully , will send out a letter first.
The good news is that with a bit of studying, I received a 92 on my written test for 9-1-1. In the same week I took the practical test, which I totally botched up 1/3 of. I know that entire test made up only 10% of the overall score. So, figure 4 points off the overall score. And the infamous oral board. I would have said that I did good, but recently someone else thought they did good and failed. I did not get my results and will receive them in the mail. Civil Service approves the list on Feb. 27th. Mel, however, got his results immediately and did not pass the oral board which makes him fail the sergeant's test overall. It has been very sad and quite honestly, I have never seen him actually act out in depression like this. Don't get me wrong, he is okay, but his ego took a beating and he still has to go back to work on Tuesday and face his squad and sergeant. I can see the blessings immediately and he can too, but it is still difficult for him. Now, when Rachel comes, he will be able to take 8 weeks off rather than two. He will still work 40 hours a week rather than the 60 or so a sergeant would be responsible for. He will not experience a paycut. He will stay locally on this side of town. He will not go to graveyard. He will maintain to have weekends off. He will not have the added stress of a new position. However, seeing all this, the house is still in the process of becoming anally spotless. We all handle that stuff differently.
I was planning a gathering here at our house today whether Mel passed or not. One reason would have been a congratulations and the other would have been pure support. Besides, he has put his life on hold for almost a year for studying. It is time for friends and family now. In the process of planning this, which was a surprise to Mel, I found out it was his mom's birthday. So now it is a surprise birthday for Mom and Mel knows about it. LOL. The house is decorated and food has been bought. We expect 12 people and a friend of Jacynta's over. Strange how things work out. I am looking foward to seeing people.
The best news for me is that my high risk (specialist) doctor has released me from his care until it is time to take the cerclage out at 36 weeks. I am 22 weeks now and feeling good. Rachel is moving around more and more each day. (I absolutely love that feeling) She has gone through another extensive ultrasound and is looking good at one pound. What a miracle again! I will continue to be monitored by my regular ob/gyn every other week because of the cerclage, but that is still way better than every darn week!
I am including a link to Jacynta's album.... ZingAlbum: Jacynta Christmas 2000 and on I have been updating it regularly. Speaking of Jacynta, she is insisting on typing now, so I must be going. I hope you all are in good health. There she goes.
With Jacynta alternating yells of Mel and Daddy from the top of the stairs, I should go and be a mommy now.
Love to you all,
Jessica
2/21/01
Hey mama,
I have been really, really sick or I would have written to you by now. I am eager to hear how mommyhood is treating you and daddyhood - Dad. I know you are busy, but when you get a chance, do fill us in. Oh, and more pictures of that beautiful dark haired baby Maggie if you can would be lovely. When is Gram going to visit you? I wish I could be there to see her face light up again.
Wow, the miracle of mommyhood,
Jessica
3/1/01
I ranked 18th on the civil service list for the 9-1-1 position academy. 88 on the practical and 92 on the oral and 92 on the written.
I have been a bit off in the distance because some stuff has been going on around here. The best was to explain would be to include a copy of an email. Please excuse it for not being written on a very personal level. And for the delay in information since we have only just started telling people other than family.
Okay here it is:
I had gotten very sick. Only I didn't know how sick until recently.
I have some not-so-good news. It is very disturbing. It is
not something I am willing or ready to discuss. I had complained about a
discomfort in my breathing in deep or getting short of breath to my doctor
very nonchalantly. Anyway, I had gone to my doctor complaining and
requesting to get a chest X-ray recently. Especially since 6 years ago I had
one done and they said they saw black spots, no big deal, and to get another
X-ray done in a year. Well, I went to get the X-ray done and the technician
was pregnant and talked me out of having it done. Coincidentally that week I
got this massive chest cold that I couldn't beat. Sudafed, Robitussin,
nothing would help. Then you know the doctor put me on Zithromax and
Hydrocodone cough syrup. I told him about the Xray deal and he sent me
somewhere else to get one done. The results were reported that night that
they found a large black mass in my chest. Large. Not knowing enough, they sent me for a CT scan immediately and the results are pretty much inconclusive except
that there is a large solid mass in my chest cavity the size of a large loaf
of bread. 13.?cm X 8.?cm. Not good. We don't know too much more. I went to a
pulmonary specialist to check my breathing and lungs. No results. On
Tuesday we, Mel and I, went to the specialist and have her give us her best
diagnosis and the referral to a cardio-thorasic surgeon (?), which is at 4PM today. It will need to come out no matter what, but we are in limbo about doing the biopsy - how and when. Pregnant or not. We HOPE to get some of these answers today.
So, wanna know where I stand? Me too. This is just a thrill going from doctor to doctor and having them all talk on the phone like I am some lab rat and make decisions about my life. The positive of all this is that my one and only trusted doctor who found this lovely mass (which I am thinking of naming Jaba) has taken the initiative to choose all of the doctors and make all of the referrals. And since I am pregnant and he is my ob/gyn they all check back in with him. I have always hated the whole medical industry along with insurance (who I still am disappointed in) but for some reason, this happened and everyone is helpful, willing to take time to talk, make my appointments for me, call me at home, return calls, and rush things whereas usually it is all about waiting. So, anyway, the current status of my large mass is that they keep saying how large it is. Lovely. It is one of 4 things, two they don't think it is, the others are lymphoma, we are praying it is not, and thymoma which is an overgrown useless gland. It lies in between my lungs, slightly touching my heart, slightly attached to my right lung, and totally against my windpipe. So, the horrible cough I have - not a chest cold. The shortness of breath, not due to my pregnancy and the fact that any recline let alone laying down causes a practical cessation of my breathing. Not to mention the discomfort and strain in my chest. Anywho, I am going to yet another doctor today (which has been challenging finding babysitters regularly). I am going to see a cardio-thorasic surgeon for yet another evaluation of the CT scans. Which by the way each doctor has a slightly variated conclusion of. What I do know is that if I wasn't pregnant, they would have already had me in the hospital, but because I am, they are hesitant about even doing the biopsy. That is what today will determine. I do believe they want me to go for a CT scan guided biopsy with a big needle first. They prefer me to stay pregnant as long as possible. Now I am 26 weeks and Rachel is due at 40 weeks, June 8th. Assuming this is a thymoma, they will have to remove it after the baby is born. Depending on how well things go between now and the due date would determine when the baby is born. For some obvious reasons and some not so obvious, they don't want me to risk a C-section. I don't know about recovery time or treatment after, but everything I have read gives survival year statistics. The doctors won't even discuss it until we know that is definitely what it is. If it is lymphoma (which one doctor said that he doesn't think it is from the CT scans), then radiation treatment is the only option. G-d I hope it is not that. Anyway, that is the somewhat detailed version of what my life is like morning, noon, and night these days. It is everything I do, think, say, and not sleep. I spend much time researching on the internet and am slowly telling those around me. My spiritual growth has been temporarily stunted and was even slightly bruised, but I am making a comeback with love and support all around me. Way more than I had suspected even existed. I try to keep it not all about me all the time, but it is difficult. For the most part I am still totally functional, just uncomfortable, exhausted, and getting a bigger belly (even though I have lost weight - ugh). The baby (Rachel) is totally healthy and is none the wiser and will continue to get all that she needs. My hope is returning (still with fear).
Pre-op / Prep today. We are leaving momentarily to do that.
Biopsy tomorrow 6:30AM prep. 7:30AM biopsy (1 hour) Recovery of 4 hours. Then I am not too sure how they came up with a time to leave around 2:30PM or 3:00PM, but that is what I know.
I asked about the pain factor and whatnot and was told that they make me comfortable. . . whatever that might mean. Valium, they say. Geez - that means more IVs. Hell, you get one for the CT scan iodine anyway.
Maybe I will hear more from the nurse today, but that is the update. Then the 9AM on Monday with the surgeon to evaluate. Hopefully with results from the biopsy.
We don't plan on telling Gram.
3/2/01
Safe and sound. Jacynta was kept awake so that she would sleep now and it is working like a charm. We just got in.
It is over. Damn good thing. It was strange. The procedure itself was hoped to be accomplished with one needle, but it wasn't enough of a sample. Within 10 minutes they returned to do another with a device that took tissue sample rather than just cell sample. But still had to go back in with it 3 times. What is left is one puncture wound about the size of a well cooked piece of spaghetti, center left clavical area, and it is becoming a more and more sore of an area as the local wears off. My shoulder is a bit sore since aparently there are lots of nerves there and one shot to my shoulder. I'd like to say post-op recovery was a breeze, but as a nasty wave of nausea came over me so did the sweats with my blood pressure dropping to 75 over 30. It was like passing out or fainting, but fortunately passed in not too much time. When it was gone, it was gone. Nonetheless, it is done. Results will be known tomorrow at the lab, but I will not have any access through my doctors until Monday, at which time I have a 9AM appointment.
3/5/01
Dr. Shapiro, the pulmonary and special medicine referring doctor wants to see me tomorrow at 1:15 now that I have had the biopsies and meeting with the cardio-thorasic surgeon. Hopefully she will have the results at that time and can clarify the different guessed diagnoses between herself and the surgeon.
Well, back from the cardivascular thorasic surgeon. Nice man. However, the needle biopsy showed inconclusive. Nada. The tissue biopsies are not back and won't be until this afternoon, tomorrow afternoon at the latest. So, again, nada. Although this doctor had the most positive attitude, I feel worse than before. The overall story is that no matter what it is, the best thing to do is going to be to wait as long as possible for Rachel and then further the tests if this tissue sample is inconclusive as well. Treatment or surgery can be done as soon as one week after delivery.
Now, here is my confusion.. what we thought had only 4 possible outcomes has now changed. The four things that I mentioned that it could be would require surgery (resect). He is telling me that best case scenario would be a Hodgkins lymphoma treatable by chemo as opposed to something that would need to be removed. Chemo hopefully without radiation. (Which, inevitably, would be another set of doctors)
I will so much hate if everything done for the CT scan biopsy on Friday was for nothing.
So, with the coughing, constant exhaustion, discomfort, nausea, pain from coughing, and whatnot, he has told me the best thing I could do is try to focus on something else and wait it out. Now I have to tell you that sounds like a novel idea for the next 7,8, or 9 weeks (I won't wait longer than that), but at the moment it doesn't feel possible. Everyone keeps telling me how this couldn't have happened at more of an inopportune time. Or, just how big this damn thing is. Again, a doctor I have not met, knew of my CT scans and how impressive they were before talking to me. I, of course, will do whatever it takes to have a healthy daughter, but hell, I am totally flustered. "Life on life's terms".
I don't know what I have left out if anything. We still basically know nothing and have no plan. I will listen to the tape later, which I recorded in the Dr.'s office, and if I have missed anything, I will update you.
Love,
Impatient, frustrated, scared, annoyed (at the moment)
Jessica
Hodgkin's Disease Here is a link to more information...
Lymphoma Information Network - Hodgkin's Disease
Tomorrow I have to call the oncologist at noon to schedule an appointment which they expect my call and will get me in this week.
Til then,
Love,
Jessica
3/08/01
Thanks to everyone for the kind thoughts, wishes, calls, and prayers. I truly appreciate all of it. Yeah, this is tough, but at least we know now and there is a lot of relief in just knowing. I have been told that this is the best cancer to have and that it is treatable and even curable. Hodgkin's Disease. There is a lot more to be found out in reference to classification, stage and treatment as well as Rachel and her arrival. I will share the information as soon as I know. All I know at this point is that on Friday I have an appointment with the oncologist at 1:15. Wow. Mel has been golden. I could have never asked for a better partner, supporter, and father to my children. Not to mention his parents. They love me and are also wonderful. His boss has been an angel as well.
To add spice to our lives, shortly after a brief visit from a friend in uniform, a couple of guys who had just robbed a bank around the corner dropped a car and switched to another in front of our neighbors house. Wrong neighborhood. The fireman told the other cop's wife on the block and then told the cop over here and it was reported immediately.
Love,
Jessica
3/10/01
What a trip in the cancer specialist and treatment building. A room of chairs and IVs and people with no hair and people with the same head hugging turbins in different colors. Mel and I have already discussed the various hair cuts and styles before a flat top and finally a buzz cut before I lose my hair. But don't worry, I am not in a hurry.
Now on a slightly more serious note, we didn't find out much today. The oncologist was not totally satisfied with the diagnosis being final coming from cell samples only and from this particular pathologist lab. The diagnosis, however, remains as lymphoma. But there are so many different types. 40 or so. On Tuesday I will go see a general surgeon for, yet, another consultation. But this one is to set up an outpatient surgery to remove an actual lymph node and get the total true biopsy diagnosis with not a question left. From that, they will be able to tell if this is an aggressive cancer or not. If it is, treatment is more urgent. If it is not, then treatment can wait for a healthy baby which will be in 7 weeks - 6 weeks early. So, until then, that is all we know. Bottom line - I have it. It needs chemo.
Jacynta is whining to take a shower. Gotta go.
With love,
Jessica
3/13/01
Surgeon will have me in on Friday morning 8AM to remove a lymph node from the right side of my neck and send it off for a concrete diagnosis to be back in 3-5 days. I am sure Sat. and Sun. are not included, so I expect a result by Friday. This surgeon mentioned that he has seen masses in the chest like this respond very well to chemo when dealing with lymphoma.
Baby specialist tomorrow morning at 9:30.
Doing alright. Totally beat today.
Love,
Jessica
3/13/01
Back from the ob/gyn. The good news is that I haven't lost any more weight, but am still at 118. Ugh! I need to pick up some "ensure" or "boost" shake things for the calories. He reassured me that increasing calories will not increase tumor size. I may be able to get them down easier than food anyhow. My cervix is still closed and my cerclage is still in place, however, Rachel is placing a lot of pressure on my cervix and coughing doesn't help. But still, good thing we have that cerclage in there. My belly measures small so, all things combined, I am going to see the specialist this Wednesday morning at 9:30. They are mentioning getting as much rest as possible and even mention of bedrest. We are not making any moves in that direction, but I am thinking of options now. I just assume find someone to come in and help. Like on a schedule. I am almost a willing participant for bedrest at this fatigued point. There you have it.
Dr. Lovett, a surgeon, today to set up a lymph node removal.
Lovely.
Love,
Jessica
3/16/01
Just walked in the door.
Apart from the excruciating neck pain (removed from left side of neck) the nasty nausea from the wonderful, yet hated "lortab" and the emotional bliss, I am okay. We expect results differentiating which cell type of Hodgkins on Tuesday. Which means I expect a call on Wednesday. The lymph node was bigger and deeper than expected and I don't want to discuss the length of the cut. (3 inches or so). They promise it will heal well.
Off to bed I go - not having a clue how to get comfy.
Until I feel friendlier, Love,
Jessica
3/20/01
Well, spirits are not so good today - just because. I think I finally broke. 'Tis alright, I will bounce back. Just not feeling well physically or emotionally, although I am extremely grateful that the cough magically subsided after the surgery, but now I constantly feel like I am in a choke hold. Spent 3 hours at the hospital for contractions last night. They pumped me full of liquid through yet another IV and gave me medication along with a script to keep them from coming back. So that is okay. Neck is still pretty sore, but doing alright. Got the results today although I will meet with the oncologist formally on Thursday morning. What I have specifically is Nodular Sclerosis Hodgkins Lymphoma. It is the most common in women and is often found by these masses in the chest. Doc said it probably started in the neck. Hmmmm. It is the 2nd least aggressive of the Lymphomas and often doesn't go below the diaphram. He said I am a "Stage II (2)" and will begin chemo within one week of a normal delivery of Rachel or two weeks if a C-section becomes necessary. He also said chemo will be 1X every other week for 6 months to start and that he thinks that will do it. Then radiation to, quote - unquote, tidy things up a bit. Let's hope the amount of time is right. That is what I know. The next six weeks seem to me to appear to be the most difficult, but I haven't had the pleasure to experience chemo yet. One friggin day at a time!
I will write again soon, but Jacynta has finally rested her weary head (it's about time today) and I NEED to lay down.
With love,
Jessica
Hello to all my supportive friends and family. Today is the first day of the rest of your life. Damn, today was long. Made it though. Went to the oncologist today who basically told us what we were already told. Hell - I can't believe it! I have cancer. Amazing. He is totally optimistic about the treatment and believes I will have tangible results quickly and that the chemo coctail will be extremely effective. All that is wonderful and I am ready, I just have a difficult time coping day to day, minute to minute sometimes. Not even about the fact that I have this C-word, but how I physically feel. Exhaustion cannot even be explained. I can barely walk up a few stairs before my whole body wants to give out. I swear, no exaggerating there. So, you can imagine my battle as a productive parent and wife. Emotionally and physically. I seem to be running a regular fever in the evenings around 100 - 100.5. Not so bad for a pregnant lady. Not to fret unless it goes to 101.5. And it doesn't. Nausea is constant and gagging is getting more and more frequent as this mass presses against my windpipe. Laying down and breathing don't go hand in hand. As if finding a comfortable position while pregnant does. Food doesn't go down to well when I force myself to eat and all vitamins get stuck. The back pain I thought was from constant coughing (which is returning) and stress is not relieved at all by the numerous trips to the chiropractor because it is the mass pressing on nerves. Who knew! The gagging and back pain are the worst out of it all. I cannot bitch about much else. I am extremely happy although increasingly uncomfortable with a growing belly name Rachel. I am 7 months pregnant and weigh the same I did the day Mel and I got married. 118. And I was worried about being big after the second baby. Watch what you ask for. Rachel is still gaining and growing well. She is unaffected. We could have actually started chemotherapy not affecting Rachel, but my platelets or white blood count (whichever) will drop down so low that I would be so susceptible to infection and that is dangerous for the baby. So waiting is the goal. The longer, the better for Rachel, however, I just don't know how long I can stand the symptoms. Seriously. I am insane. We'll see. Everything is a catch 22. Mel is hanging in there just as good as he can, but I know all this is wearing on him too. It has got to be so difficult for him. I just don't know what I can do to make it easier for him. Jacynta is intuitive. She is reacting and almost two. Not to mention she is coming down with a cold I think. Let's hope not. It is time for two-year molars too. Oh gosh. Hopefully when my good friends get the fundraiser going strong we can get a regular nanny or mommy's helper in here to assist 40-50 hours a week. I will explain more about that later. So, I have done my fair share of bitching, don't you think? I think I just painted a realistic picture of where I am at rather than just the mere details of physician visits. I hope I have not offended anyone by complaining. About doctor visits... after my little rendez vous to the hospital for the contractions, I was supposed to make appointments with the ob and the specialist and didn't. Also didn't follow up on the glucose testing. REBEL. If my blood sugar is off they will tell me what foods to eat more of and what ones to restrict. Yeah, I need that like I need a whole in the head. LOL. And the specialist, at worst, could put me on bedrest. LOL. Trying desperately to do that anyway. And I go see the OB on Monday for my regular visit. Besides co-pays and labs are yucky. I'll let you know if he yells at me or laughs at me. I have been an excellent patient all along. Well, with that, please forgive me for not writing individual letters. I am zonked from this. Besides this is almost as personal for me to write; it is all about me. So, to keep my head a bit busy, I would love to hear from everyone and all about you. Please.
With lots of love and desperation,
XOXOXOXO
Jessica
3/27/01
Nothing about my physical state has changed for the better, but being given a tentative delivery date of April 20th thrills me. I will be 33 weeks along and Rachel will probably have to spend a few days in good care at the hospital in the NIC (Neonatal Intensive Care) unit. I know she is safe there. I will recover as long as possible in the hospital, usually two days, pending no complications. And within that week I will be able to begin the wonderfully awaited chemotherapy treatment on the other end of town. Each darn day is still such a challenge physically, but knowing it is 3 1/2 weeks away is easier for me to swallow than 5 weeks. Not that I can swallow much of anything but liquid. (Tee Hee) And I swear even that gets caught in my throat. The other thing is that the script for this "great" pain medication did nothing, nada, zero for me so I am stuck taking the Lortabs which actually help. They really do help. Of course they make me nauseaus and some other stuff, which is why I never liked pain medication. No chance for abuse there. And the baby is safe, Rachel that is, from addiction. My poor child has had more medication than any child should. Oh well. She is thriving according to any normal pregnancy. I however, have lost another pound. It doesn't matter how much I take in. I suppose I will be the skinny gal I have always wanted to be. I will just have dark circles under my eyes and may have no hair. LOL.
I was going to insist on getting another CT scan because of the obvious growth of the mass and lymph node infections in my neck and throat to satisfy me that this is not growing into my organs, but along with the doctors reccommendations, I will wait. Wait. Wait. Wait.
So, I still have a fantastic family. All inclusive. My husband really deserves a medal. My parents have been so supportive. My sister just loves me. My in-laws exceed what I thought in-laws would do. My friends continue to support me in many ways. And strangers too. People I haven't spoken to in years too. Wow. Who knew! As a matter of fact, an old friend, who happens to be a relative of a closer friend owns a successful cleaning business and has sent over a cleaning crew who is cleaning my home. How wonderful. Mel is great at doing EVERYTHING, but this is such a great help. He was even very open to the idea... and for those of you who know him, know that we must have needed it then.
My friends are moving right along on the fund-raiser project. I am sure you will all hear more about that soon.
I have gone to a leukemia/lymphoma support group that was just started and didn't quite fit in totally, but the stories may be different - the feelings are the same. What most cancer patients have in common is their ability to unintentionally elude the doctors of the actual disease and be treated for symptoms for a long time. That is frustrating, but common.
By the way, did anybody, in any way, by chance, morbid or not, keep all of the emails I have sent out from the beginning when I thought I had pneumonia? I have not, and journal wise, wish I had. Let me know. Thanks.
Well, dripping sweat and gagging, I am done writing. I hope to hear back from you all.
With Love and spirit,
Jessica
3/29/01
Okay so we have a name for sure. . .
Rachel (Spelling good???????) Rachael?
And a middle name ...
Rene? Renee? Renae? (yuck)
What do you think?
3/30/01
Hi
This is Tim Hall I am now on the phone with Jessica. Who is curently at Valley Hospital (388-4000) . L&D room #6. Her water broke last night at 10:45 p.m. . She has been admited and will be there until Rachel is brought in to this world. Having been taken off of the anti contraction medication and cerclage has been removed. Rachels arrival could be anywhere between now and 3 weeks. We expect no longer than a week. Rachel will proably be in nic for a while as she is very early. So please keep both of them in your thoghts and prayers they need all the help they can get. I will update again when I recieve further infomation.
Jessica has no computer with her so she will reply at the earliest possible moment. But please keep writing she loves her E- Mail.
Love to all
Tim Hall
4/18/01
Hello all. Sorry it has been a while since I have written. I was doing my best to sleep and ended up typing an update letter in my half sleep and figured I as might as well get up and try to do the real thing. At least that way it won't be in vain. I am eating pretzels and fritos so I have somewhat of an appetite. That is good. LOL
Well, I will try my best to recollect the events of the last week or so. Most of you know I got out of the hospital on Thursday the 5th so that I could begin chemo on the 6th. I have to tell you that having had a laparatomy (technical name for the major abdominal surgery I had) I was not prepared for the outside world. But anything to begin the chemo was my deal. I was in so much damn pain though. I am happy to report that the worst of that pain is over. As well as the worst of the pain from the tumor in my chest and back and the choking in my throat. Can you believe it? One chemo treatment and already physical results. The doctor said that would happen. Well, the minute Rachel came out I had immediate relief in my chest and with my breathing too. So anyway my first chemo treatment went well considering what it is. Chemo is harsh chemical treatment. Period. I was given anti-nausea in the IV before beginning the chemo and then administered two huge syringes of "stuff" then two bags of "stuff" completing 4 different chemicals in my every other week chemo treatment. I sat in a big lazy-boy type chair and the actual treatment took about two hours. I was told in a very up front way, face to face, by the nurse that in 7-10, 14 days at the most, I will definitely lose my hair. You would be amazed just how many of my friends will argue the fact that I may not lose my hair. Let me explain quickly why that is... some people do not lose their hair with chemo simply because each of the many different chemo treatments have different side effects. All four of mine, the first major side effect is loss of all hair amongst many other side effects. So far, I have had a nasty taste in my mouth which was immediate. Nausea which has come and gone. Total loss of appetite for the first week. Mouth sores. Fatigue which is predominant for all chemo treatments. Although the nurse said that sets in later after a few treatments, everyone in the chat room has said 22 out of 24 hours a day would suffice to be slept away. I can totally relate especially with the labor, delivery of Rachel, and surgery.
Speaking of my little, little Rachel. She is doing wonderfully. I cannot believe she is two weeks old. This whole ordeal is totally messing up my internal clock. Anyway, she is off of all breathing help. All of it. Yesterday she was taken off of the oxygen and we hope this time it stays permanent, but understand ahead of time it may not be, which is okay. She has beaten many challenges so far. She is on her own at this point. Even without an IV in her hand, which means that if she stays that way we can hold her up to the window for Jacynta to meet her through the glass. Confusing, I know, but better than nothing. I have only been able to hold her myself for a little less than a week and I must tell you, emotionally confusing. I only want to bring her home at this point. It is painful to leave her there now. I finally feel incomplete without her now. I think that feeling was delayed because of all everything else I was dealing with and the pain killers - well, dulled the pain. Which is a whole other story, but let me tell you about Jacynta first.
Jacynta, my oldest daughter, has been my little hero. Thank G-d for her. She has kept me going when I didn't want to keep on. She is chattering up a storm and shows true emotion. I mean, when the world is falling apart, my little charmer can give a hug without being prompted that would melt away any negative emotion possible. She, being my first miracle has repeatedly shown me the light at the end of the tunnel without even knowing it. Or does she?
The baby shower turned out to be as wonderful as I could have hoped it would be. How refreshing! And I sat there in one spot the whole time and just enjoyed it. The friends were abundant as were the gifts. The whole general buzz in the house was of joy and fun and laughter. Like I said, How Refreshing!
So, after two weeks of being out of the hospital, I decided that I had been on pain meds long enough. I just want to know who has given me the right to start thinking for myself. LOL. I have been on hard core pain meds for two months non-stop now. I figured that was enough. Hell, I could quit. Whoa! I think that may have been the biggest mistake in my life. I totally underestimated the power of the drugs I was ingesting for two months. The first thing that happened was I slammed, and I mean slammed with emotions. Any feeling would do. But I tell ya, crying was the response of choice. Uncontrollable sobbing is more like it. And I was still clueless that I was beginning to lose control. Eventually I gave the lack of drugs credit to my discomfort but still thought I would be able to handle it for a while. Well, I have to tell you that by evening sweating became obvious and by night time I was drenched with the chills. I though oh well, I will sleep it off. Duh! We have all seen the movies of hard core junkies kicking and they do not sleep. I didn't realize how bad it was. I was right out of the movies. Very very sick. Sweats, fever, chills, twitches, muscle spasms, sick, restless, ugh! We / my poor husband Mel called the doctor who, for him, promptly returned the call around noon. I must say he was not happy with my decision to quit cold turkey and was under the impression I knew I would withdraw. I must interject here - if I knew it would be like that, I would not have consciously made the decision to do that to myself. He told Mel to put the pain patch on me ASAP and to create a regimen with my oncologist to eventually come off of it. The DT's could cause other serious illnesses which I am not capable of handling right now. Oh well. I am off of the morphine though which was my main goal. Within 1-2 hours I fell asleep for about 3 hours and awoke to my daughter who also awoke from a nap. I was able to sit up and get out of the bed. Thank G-d. I have never been so uncomfortable and scared. So, that is one challenge down and out of the way for this whole recovery thing in the way of "Cancer". What a fine start. Whew!
My parents are flying in late tonight. I am so looking foward to it. I am afraid of the emotional meltdown that I have anticipated. I mean, I have yet to look my parents in the eye knowing I have a life threatening illness. I have yet to get that Mommy or Daddy hug that you cannot really get anywhere else as long as they are still around. I have had offers from parent like figures to give me that fulfilling hug and have denied myself the opportunity to let go. So, with the lack of the better narcotics, I am on the verge of an emotional meltdown anyway. It is a good thing. Don't get me wrong. I look foward to it. Alright, that is enough real transparent honesty from me. So, they will be here one full week. Within that time, they will go to my oncologist appointment on Friday to get the readings of my CT scan from this week which covered my whole body as well as the PET scan. A PET scan tells you where there are ANY live cancer cells throughout the body. Cancer cells can be alive and not in a tumor and you can have a tumor that is not cancerous. This test tells all. I will get both results on Friday as well as my second chemo treatment. What an experience for parents. Also, I will probably lose all of my hair while they are here so I have a hair appointment with a friend scheduled. She has offered to do the ritual like cutting of my hair to a flat-top so that when it comes out on its own, it will not be as dramatic or a big mess. And if it comes out clumpy, then I will buzz it all off anyway. So what do you all think? Mel wants to shave his head now. Should I let him or even worse,,, encourage it? He wants to do it bad. LOL
Well, I, in the healing process has many scars and is ready to go onward. Thank everyone for your support and loving calls, cards, and emails. Especially while I was in the hospital, although much of it is a blurr. Heck, much of the last couple of months is a blurr. I am fairly confident that counseling will be of much help in the future. LOL.
Well, I might ought to try to get some more sleep. Although, it was much easier to fall asleep given a dose first. Oh well, I couldn't stay asleep on it anyway. I am sure that just as soon as I learn how to sleep again, Rachel will come home. LOL.
With love,
Jessica
PS - If anyone has saved all of my emails, for whatever reason, I would still like a copy for my memory records. They would date as far back as mid Feb.
4/25/01
The good news is that Rachel is growing in leaps and bounds. She weighs 3 lbs. 12 oz. and is gaining regularly. She eats two oz. every 3 to 4 hours out of a bottle now rather than a tube through her nose. She is maintaining her body temperature and is doing so without any assistance. She has all the characteristics of a baby almost ready to come home and is only 3 weeks old which puts her at 33 weeks gestation. We expect her to come home with us in about a week. Jacynta is learning that Rachel exists in a room at the hospital and even met her through the window today. It was interesting to see the natural instinct of jealousy in her nervous chewing on her dolly as she studied her sister. One day at a time when Rachel comes home, right?!
The update with my tests is that I am a "Stage 3" cancer patient which doesn't mean much other than changing the survival rate to 85 - 90% after 5 years rather than 90%-95%. It was something that we kind of expected and accepted as not that big of a deal. I am reacting well to the chemo already after two treatments. My chest and back pain are virtually gone as well as the choking too. I have been blessed with side effects rather than symptoms. The most obvious are the severe fatigue and as of today the severe nausea and vomiting. Yum! No more PF Changs (Chinese). Believe it or not, I am still grateful.
My visit to the ob/gyn was good. I am healing from the surgery as well as delivery just fine.
Parent visit has been wonderful and I will be sorry to see them go. I hope to have them back in July for Jacynta's birthday.
Well, that is about it for me. I am going to get to bed.
With love,
Jessica
5/09/01
I know. Been a while. And if it weren't for the few inquiries, I would have thought you were all tired of the updates. LOL. As if I needed to be a genious to figure it out, I finally know why I haven't been writing updates. Now instead of writing them while half asleep at 3AM, I am feeding Rachel. My spare time is being utilized differently. I am trying to get to more of my meetings to level my head out a little bit. I am totally tired. The initial fatigue is still there, but a newborn can totally increase it. I didn't think it could be increased, but it has. I still manage to push through it a lot of the time though. It may be catching up with me though. Lately, I am very weak and kind of faint. I feel a sore throat coming on along with an earache. I am sure the chemo is beginning to effect my immune system, although up until this point, my blood counts have been good. I must admit that that surprises me. I think I have mentioned that the first chemotherapy session reduced my tumor by approximately 20%. That is amazing. If only each one did the same thing I would only need five sessions. Wishful thinking. It doesn't work that way. I am grateful for the first one. I have not forgotten the pain or discomfort I was in before. Now that it is over, I can share that I had gotten a slight case of shingles. I didn't know that was what the 6 marks up my rib cage were until they were already over. They were also what had caused the pain in my back. Who knew! Aparently it is very common for chemotherapy patients to get them. Like really common. Oh well. Glad that trip is over. What next? Earache? My nausea is increasing, but I still have only vomited once. Come close two times since, but only once. The sun seems to be no so good for me. I have already slightly burned my neck too. I suppose I will be more careful when I am bald. I want a really good tan though. If I have to be sick and bald, can't I have a good tan line? Hell, I am at the lowest weight I have ever been since high school. A whopping 102 lbs. I have tried for years to lose weight. Watch what you ask for. For reference.... I was 118 lbs on my wedding day. I like the fact that I am 102, but not how I got here. The worst part of it is that I have seriously been eating too. So, I don't know the why or the how of it. When people compliment me on being so skinny I just don't know what to say. I usually simply say "thank you". The car wash fund raiser this past weekend not only kicked ass financially, but emotionally too. Yes, it was totally emotional for me when I got there, to see all that was being done, but even moreso was the morale. I could not believe just how much fun everyone was having and how positive the energy in that parking lot was. People pulled together to make it all happen and the result was good spirits shared and $2200 towards a nanny to help us out. That covers two months exactly. I am so grateful. I have already called them and am getting ready to mail out the first check for the finder's fee to start interviewing nannies. I must tell you all that I am terrified of the entire process of interviewing women and letting yet another person into my life fully. I am very excited to do it though. The freedom to sleep when I need to is what I look foward to the most I think. I do believe that another fundraiser is being planned tentatively for Sat., June 16th. Put it on your calendars. It hopefully will be in Angel Park (Durango and Westcliff) and all day with food, entertainment, games, and a HUGE raffle. Speaking of... if you have donations for the raffle, let Lori know at 230-2326 or me 695-0135. I am looking foward to a day of fun. Heck, going to the carwash for 1-2 hours was my biggest outing in a long long time except my baby shower. It doesn't take much to entertain me these days so the event on the 16th is really looked foward to. It is also the day before Father's Day. How exciting. I am healing from the surgery as well as can be expected especially with the chemo. My scar is looking good and my pain has graduated to soreness as if I have done a lot of crunches. I am grateful to be healing. The other scars from the biopsy (neck) and the chemo port placed under the skin in my upper arm look like hell though. Dark and ugly. I sure hope the one on my neck gets better. I am still on the pain patch only because I have to gradually come off of it. I have not written an update since I was so traumatized from my sudden removal from the other pain medicine. I did it to myself unknowingly. Believing I didn't need any of the pain medicine, including the liquid morphine and the patch, I didn't take any more. I should have known something was up when I became severely emotional. I didn't catch a clue so later when I was with the cold sweats I figured I would just go through it. Tough itout so to speak. I thought I would sleep it off. Well, like a really bad junkie out of a movie, I kicked and hurt and sweat and shook for a whole night. Finally we put a call into the doctor - no, my dear husband did, I couldn't move or speak - and they called back at noon. Needless to say, he was not happy with me and wanted to know what we were thinking. LOL. He insisted that to avoid serious complications like seizures, to put a patch back on. We did and about an hour later I fell asleep and quit soaking the sheets with sweat for about 3 hours. I awoke to my daughter who awoke from her nap making noise under my bed. Thank G-d. I was so happy to see her. So, now I am bi-weekly reducing my dose of the opiod based patch to totally come off of it. I have 3 weeks left. Unfortunately I cannot drive while wearing them either, so the sooner the better for me. So, enough about me, my illness, and whatnot. I must tell you all about the family here. Challenging. Mel has almost no hair. He says he did it for me, but I know he has wanted to do it for a long time. I too have almost no hair. Very very thin and probably have to shave it tonight. I will save that info for the next update letter. Mel looks as cute and sexy as ever though. I must say that when he is being a nurturing daddy is when he is the cutest and sexiest to me though. Corny, but true. He speaks to the ever maturing Jacynta sometimes like she is a full grown adult and I think it is the neatest thing. Especially when she answers him back like a full grown adult. Jacynta is really neat. I love to just watch her. Somehow I cannot watch close enough because she woke up about three days ago and I swear she changed. Her face just changed over night. And since we have a little little baby Jacynta is HUGE! I know it is all relative, but her diapers are just too big and her legs are just too long and her vocabulary is just too large. My little girl is growing up and it is so aparent with Rachel being so teeny. Heck, Jacynta was the same size once. At least we know that eventually they will both sleep through the night. That is hopeful. LOL. Rachel is growing. Thriving. She is definitely over 5 lbs now. She is much longer. It has to hurt to grow a few inches in a month. Thank goodness though. She isn't as frail anymore. She is almost like the average baby. Just miniature. She has gained plenty of meat on her bones now too. Her baby sounds are regular and she has even broken into a full blown cry a few times. (Premies don't cry, just make sounds). She | |||||||||||